Epilepsy in a Nutshell

Ontario steps toward a strategy for comprehensive epilepsy care

2011-11-11T13:02:00.001-08:00

Dear all,

A very important development has caused me to emerge from my cocoon of silence. The following message pertains specifically to Ontarians, but those living outside of Ontario should try to support this initiative as well as it will benefit you in time.

Below is a message from the Director of the University of Toronto Epilepsy Research Program.

"There is an important chance for better epilepsy care in Ontario, and I am writing to ask your help and support. We have been lobbying for improved epilepsy care for years. Now it seems that it may be within our grasp.

A high-powered clinical committee has been negotiating with the Ontario Health Technology Advisory Committee (OHTAC). OHTAC has prepared a recommendation to the Provincial Government for a comprehensive new program of Care for Drug-Resistant Epilepsy in Ontario.

The OHTAC document has been posted and OHTAC has asked for public comment, which can be submitted to their website: OHTACinfo@hqontario.ca. (Deadline, November 30). It is important that we provide that comment. The proposal may stand or fall on the basis of public input.

Below is an Executive Summary of the OHTAC Recommendation. The complete Recommendation can be accessed here.

EXECUTIVE SUMMARY
The new program would include: 1) regional epilepsy centres for clinical care; 2) the development of provincial guidelines for epilepsy care; 3) enhanced training of epilepsy clinicians, including neurologists, surgeons, dieticians, EEG technologists, neuropsychologists and social workers; 4) telemedicine for centres in the North; 5) “wait time” standards for access to care and tests; 6) a provincial data base; and 7) an expert advisory panel, which would include both clinicians and representatives of not-for-profit epilepsy advocacy groups.

Please take the time to input – even briefly – to OHTAC during the next three weeks. Following this first step, we hope you will provide input to your MPPs.

Thanks everyone!

Kirk.

Further Rationalization for Comprehensive Epilepsy Care

2009-10-03T08:05:00.000-07:00

Well, it has been a long time since my last post. Hopefully people haven't stopped checking in!
I apologize for the hiatus, but having a baby means no sleep, which means no mental energy for blog posts.
My son is peacefully napping now, so I'm stealing a moment to post on something that is important to me: comprehensive epilepsy care. Well, not comprehensive epilepsy care specifically -- but some rationale for why we need comprehensive epilepsy care.

Epilepsy is a complex, multifactorial disorder
Sure, there may be some open-and-shut cases where patients are seen by a family physician, given a first line anticonvulsant drug, become seizure free and go on to lead a relatively "normal" life.

For more than 40% of individuals with epilepsy, however, this is simply not the case. There is generally a long list of drugs that are tried over several years with limited success. Many of these individuals do not get to see an epileptologist - someone who specializes in the diagnosis and treatment of epilepsy.

To ensure that everyone, at the very least, has an option to see a specialist -we need a formalized system whereby patients are referred to see a specialist after they fail one or two anticonvulsant drugs. This would be a critical element of a comprehensive epilepsy care system -- a formalized primary care physician engagement strategy.

Uncontrolled epilepsy costs the healthcare system a lot of money
The comprehensive epilepsy care centres in some American cities (http://www.naecepilepsy.org/find.htm) are a great example of how we can improve the quality of care, improve the quality of lives of those living with epilepsy all while spending less on epilepsy care!

In 2001, the Canadian Institute of Health Information estimated that the total cost of epilepsy (in Canada alone) was nearly $800 million dollars. The direct costs were nearly $100 million dollars, with half of that for hospital care and the remainder for physician care and drugs. The major expenses, however, are not directly related to the cost of epilepsy care -- these are the indirect costs of epilepsy, such as lost productivity. These costs were nearly $700 million dollars! These are the costs that tend to be associated with individuals living with uncontrolled seizures.

I'm a lover of analogies - so here we go. If you have a problem with your car you take it to the mechanic. If the issue is complex, the mechanic may be able to narrow the problem down to your transmission, but he may not be able to pin-point/solve the problem. You can go visit a series of other mechanics who may or may not know more about your complex issue. The costs of these repeat visits add up. Or, maybe you decide to simply park the car and rent a car or quit work so you don't have to travel. All which compound your expenses and don't solve the original problem. Finally, you could take your car to a transmission specialist who, through training and experience, can likely pin-point the issue and what the best options are to remedy the problem.

Of course, in Canada we as patients don't have to worry about the cost of the specialist vs. the generalist -- but the government does in its attempt to best use the tax payer's dollar. So an argument that seeing the specialist is the most economical while ensuring the highest quality care is an essential component to proposing change in the way we currently conduct our health care services.

This is the argument that we are currently formulating. It is fairly complex, but there is little doubt in our minds that increasing access to specialized epilepsy care will cost less over time while improving the quality of care and, in the long run, improving the quality of life for those living with epilepsy.

So, stay tuned and get involved in your local epilepsy chapter. Our case for comprehensive epilepsy care is strong, and soon we will convince others that this is the only way to move forward.

Those are a few thoughts on a cloudy Saturday morning.
I hope you are all well.

Kirk.

Reference: The Burden of Neurological Diseases, Disorders and Injuries in Canada.
Found here: http://secure.cihi.ca/cihiweb/products/BND_e.pdf

Epilepsy Awareness Month

2009-03-23T09:36:00.000-07:00

Sorry for the long hiatus! In the past 5 months I've graduated with my PhD, started a job, moved into a house and had a baby.
So, as you can imagine, life has been a bit hectic.

Despite this business, however, I wanted to get a post out before March, Epilepsy Awareness Month in Canada, ended. That's right, March is Epilepsy Awareness Month. There are a few really exciting events taking place across Canada and here in Toronto.

First is PurpleDay (March 26th). Click the link to read all about it, but it's going to involve some really exciting events which will undoubtedly increase epilepsy awareness. For example, in Toronto, the CN Tower will be lit up purple. How fantastic is that? The (once) tallest freestanding building in the world lit up in purple to grab people's attention and let them know that epilepsy affects them and their community.

Another exciting note - SACEC has been asked to participate in an information session at Ontario's Provincial Parliament to help inform and educate Parliamentary Members on epilepsy! What an exciting opportunity to raise epilepsy awareness amongst those who hold the purse-strings for health care services. Here's is more information on that event -- please get involved if you can!

Help Raise Epilepsy Awareness at the Ontario Legislature!
On Tuesday, March 31st, 2009, epilepsy agencies across the province have been invited to participate at an information session for Ontario Members of Provincial Parliament (MPP). Medical professionals specializing in epilepsy care, leading epilepsy researchers, and epilepsy community organizations will be speaking with elected representatives about improving epilepsy care in Ontario.

Please help us with this initiative by ensuring that your MPP attends this event. Call or send an email to your local representative and strongly encourage him/her to attend the Purple Day Splash - Information Session on Epilepsy at Queens Park.

To help you find your MPPs contact information, click on: http://fyed.elections.on.ca/fyed/en/form_page_en.jsp and enter your postal code. Once you have your electoral district, search for the contact information of the MPP in your riding using the following link: http://www.ontla.on.ca/web/members/members_current.do?locale=en&ord=Riding&dir=ASC&list_type=all_mpps

As a representative of your riding, your MPP is responsible for meeting with constituents to help find services to assist them in different ways, and attend and support community events. An MPP may be able to help with and present a petition to the Legislature concerning a specific problem or issue in the riding, such as improving Epilepsy care. We hope that you will urge your MPP to attend.

Summary of "Purple Day Splash - Information Session on Epilepsy" Details:
Date: Tuesday, March 31st, 2009
Time: 9:00am - 6:30pm
Location: Queen's Park, Committee Room #2

Given all of the exciting events happening (these are just a few of the many) - it really feels like this year could be the turning point for epilepsy in Canada -- where it is no longer a disorder buried in the shadows. Please do what you can to get involved and make this year's epilepsy awareness events the biggest yet.

Kirk.

A Few Good E-Resources

2008-11-28T03:25:00.000-08:00

People are taking a more active role in their healthcare
More than ever before, people are starting to educate themselves on their health issues. When a diagnosis of epilepsy is made, many people begin researching immediately. "What is epilepsy?", "how did I get it?", "what is my 'new life' going to look like?", "is a cure available?", "what might my treatment look like?", "who is the best at treating epilepsy in my province/state/region?", etc. Of course, these are all things that you can find out from your physician, but many of us still want to find out for ourselves. Education is empowering, and it's nice to be able to go into the doctors office with some knowledge of your condition so you can ask more pointed questions.

The internet can be a good resource to learn about health issues, but watch out!
The internet has become an increasingly powerful resource for learning about health issues. Type "epilepsy" into google and you'll get over 11 million "hits". It's important to note that not all electronic resources (so called "e-resources" or "e-tools") are trust-worthy sources. Not many of us questioned the credibility of books. We pretty much assumed that if it was published, then the author was probably a credible source (which is a bit of a fallacy in retrospect, but I won't go down that rabbit hole today). On the internet, however, anyone can write about whatever they want, making it very difficult to find accurate, trustworthy information. I mean look, even I can write a blog!

Some tips on how to find trustworthy internet resources
Here are some tips to help you navigate through the e-quagmire. First, there are many epilepsy organizations that have very trustworthy sites (e.g., Epilepsy Toronto, Epilepsy.com, Epilepsy Foundation, etc.). The medical content of these sites is often written by an epileptologist.

Another reliable online resource for epilepsy information is the website of a hospital (e.g., SickKids). This week I received an email from the Cleveland Clinic about their new online resource centre for individuals living with epilepsy. The Cleveland Clinic is one of the largest research institutes in the United States. It is also considered one of the leading medical centres in the U.S.

Currently, the Cleveland Clinic is promoting their online epilepsy clinic. A few highlights of this site are:

Epilepsy Medical Guide
Pediatric Epilepsy Support Group
Webcast Series "Living with Epilepsy"

Blogs, as much as it pains me to say this, are often good for hearing peoples' opinions -- but they are not always trustworthy in terms of the accuracy of content. I try to keep this blog as factual as possible, but I also try to keep it highly informal.

Tidy summary
So there you have it. Keep learning as much as possible about epilepsy. Keep asking the tough questions until you get an answer. Just be careful which sites you let influence your opinion- the sites of epilepsy organizations and hospital epilepsy clinics tend to be best. Also, check out the Cleveland Clinic site -- it looks very good.

As always, if there is a topic you'd like me to post on-- then please let me know. Email me or post a comment below.

Onward and upward.

Kirk.

Classic Migraine Headaches

2008-10-27T13:45:00.000-07:00

I am a migraine sufferer. I was about 16 when I started to have these crazy visual field disturbances that were followed by a crippling headache, but I didn't know what was going on. I didn't really talk to anyone about it and just sort of hoped they would go away. Depending on the time of year and amount of stress in my life, they only happened every few months, so it didn't seem bad enough to go to the doctor (ah, the foolishness of youth). Then in my 2nd year of university I was reading "Fundamentals of Neuropsychology" (a great text by Kolb and Whishaw) and I saw a picture of the strange pattern I saw right before my headache started (shown below). This visual pattern appears small at first but it grows in size. It is very annoying. Then it disappears and the headache starts.
I read on and learned that I have "classic migraines", which are vascular headaches (unlike normal headaches, which tend to be caused by muscle tension in the head and neck areas). Classic migraines start (most often) with an "aura". The aura is the sensory disturbance that comes before the headache. There are different kinds of aura, but mine is a visual aura, called a "scintillating scotoma" (pictured here).

From: Nature Reviews Neuroscience 4, 386-398 (May 2003)

There are a few theories on what causes the scotoma. The first one I read about is the "vascular theory". This theory states that blood flow to the visual cortex of the brain is decreased, which causes the disruption in vision (i.e., the scotoma). After a short while (maybe 10 - 60 minutes) the blood flow is restored and vision normalizes. Not only is blood flow restored, however, but it is greatly increased. This increase in blood flow causes the stretching of blood vessels in the brain and this is what is thought to cause the headache pain. Remember, brain cells don't have pain receptors, but blood vessels do. When they stretch, they cause a lot of pain.

There is another theory on what causes the aura. It is called the "spreading depression" theory, and it seems to be the most well accepted theory now-a-days. Spreading depression is a seizure-like event that slowly spreads over the surface of the brain. It leaves neurons silent ("depressed") in its wake. This lack of activity in the neurons, when spreading depression affects the visual cortex, leads to the visual field disturbances. This spreading depression also causes the release of nitric oxide from neurons. Nitric oxide is one of the body's most potent vasodilators (something that causes blood vessels to dilate). [Aside: this is why patients with heart disease are often given a form of nitric oxide to take during an angina attack -- it opens the blood vessels and stops the angina]. The dilation of blood vessels causes the pounding headache associated with migraines.

Many of the treatments for migraine (e.g., the triptans - like sumatripan, aka Imitrex®) work by binding the serotonin receptors on the blood vessels, causing the blood vessels to constrict, therefore stopping the pain caused by vasodilation.

I have taken triptans a few times. I know that those who have frequent, extremely painful migraines like to have a stash of triptans around. However, I'm fairly lucky insofar as my migraines aren't terribly frequent (1/month, on average) and I've developed a fairly good system to live with these nasty headaches without having to buy the expensive drugs.

First off, I can lessen my chances of getting a migraine by controlling my stress levels, drinking less coffee, avoiding moving from really dark rooms to really brightly lit rooms and avoiding those annoying, flickering fluorescent bulbs. Other triggers are out of my control, however, such as big swings in the weather.

Another trick I've learned is to use the aura to my advantage. The aura, although incredibly annoying, warns me that I'm going to get a really bad headache. The gives me 15-45 minutes (usually the duration of my auras) to get some pain killers in me. I discovered the miracle of liquigel ibuprofen (very fast acting). As soon as I get my aura, I'll take a few of those puppies and I find the pain isn't nearly as bad. In general, the bigger my scotoma (i.e., the more messed up my vision gets) the worse my headache will be. If it's really bad, I'll take my liquigels and I'll go home and try to sleep it off in a dark room. This isn't always possible, but it is a sensible way of dealing with the pain. Generally, after a migraine I'll have a sore head for a day or two. Coughing, sneezing, fast turns, etc. will cause my head to pound, but it's manageable.

I know this post wasn't about epilepsy, but there is increasing evidence suggesting a link between migraine and epilepsy. Is migraine a form of seizure? Certainly, the "spreading depression" theory suggests that it is. Fortunately, however, migraines do not lead to a loss of consciousness and can be managed fairly well with drugs/lifestyle changes. Whether or not you need to take prescription drugs chronically largely depends on the frequency and severity of your migraines.

Also, there are many kinds of migraine. I've only discussed the "classic" form here. Perhaps I'll post about the others later.

Have a great day.

Kirk.

Parenting a Child with Epilepsy: A Journey Continued

2008-10-07T08:08:00.001-07:00

We have been fortunate to have a guest poster-- a mother of a young boy with epilepsy, who is now on a special diet to help treat his seizures. Here is the third installment of her thread called "Parenting a Child With Epilepsy: A Journey".

Part lll
"Our son has started school. For those people who are parenting a child with epilepsy, you know how significant a change that can be. All of a sudden someone else is responsible for my child for a number of hours a day. And that person, while caring and responsible, is also in charge of many others, each of whom have needs different from my child with epilepsy. Our story is a very positive one, however. Our school has stepped up, researched, and allowed us to literally bury them in information. They listen, absorb, ask good questions and implement the strategies and therapies we suggest. Our son’s teacher is fabulous, unflappable and very capable. She treats him like all of the other children, expecting him to extend himself, maybe not in the same way as his classmates, but in a way that will promote personal growth and work toward attaining the goals we have worked together to set for him. She works in close contact with us, so we don’t worry and so we know how he is handling this new routine.

Our son has suffered a lot of negative behavioural side effects from his anticonvulsant meds: he is on two different drug therapies. We have added a third therapy this fall in the form of a Low Glycemic Index diet, or a modified Atkins diet for seizures. What this entails is lining up a diet where his calories consist of 70% fat, 20% protein and 10% carbohydrate. This was recommended by a paediatric neurologist as our son does get seizure relief from his anticonvulsants and so the Ketogenic Diet is considered too rigorous. While we work with a dietician for ideas, and advice, the diet is driven at home by the parents. We work hard to balance, calculate and coordinate to create meals that are appetizing and maintain the level of extra fat in his system. This is a difficult task, and is taken on only in the best interests of our son, to reduce his anticonvulsant medication, particularly the one linked closely to behavioural problems and suicide. The school, has also taken up this challenge, and has placed an aide with our son while he eats, in order to encourage him to eat everything he is sent, and therefore retain the 70-20-10 balance he needs. They have someone assigned to him on recess supervision to ensure he doesn’t eat food from someone else’ lunch. They have made sure that classroom celebrations no longer include food, so they don’t exclude one class member. They have lists of food no-no’s for Sam posted in the classroom, so a substitute teacher knows not even one carrot stick is okay. Mostly they ask us when they are unsure, and work hard to make sure we feel comfortable sending him and that he is schooled while he is there. We could ask for nothing more. I have spoken with parents whose children are on a diet for seizures, and they had to involve politicians to rally the school board in order to get cooperation from the school for their child’s special needs. We are so fortunate, our experience has been the opposite of that.

Our local epilepsy educator came to the school last week to give information on epilepsy and seizures, and to help the teachers in our school understand our son’s needs and the needs of other students who may have a seizure disorder. This was an optional seminar, and yet every teacher in our school came, stayed and asked good questions. I was overwhelmed by their show of support. They wanted to know our plan for seizure response, they want to be prepared to help. The woman who came to give the seminar offered to come back as often as we feel is necessary and will be returning later in the fall to speak to both Kindergarten classrooms about seizures and epilepsy at the children’s level. Our teacher is specifically bringing both classes to school that day (they go every other day in rural Saskatchewan) for this specific purpose, which makes a lot of extra work for her.

So as we enter into this season of taking stock, and thankfulness (all celebrated with food of course) we are most grateful for where we live, and the people that make up our school system. We could be in no better place."

Expressions of Courage

2008-10-06T06:33:00.000-07:00

Art is a great medium for expression. Sometimes it allows us to express things in a way that we otherwise couldn't/wouldn't.
I just found out about a great site called Expressions of Courage, where individuals living with epilepsy can submit their artwork. Have a look!

I hope you are all doing well.

Kirk.

Are Drug Companies Evil?

2008-09-25T06:51:00.000-07:00

A bit of a loaded question, I realize. My short answer is: "no". For many reasons (some valid, others invalid), people love to hate drug companies. As in any business, a few companies have done bad things to taint the image of their sector. We are seeing this now in the USA with the financial sector (e.g., Fannie May, Freddie Mac, etc.). We have all heard the horror stories of the drug company that sold unsafe drugs to third world countries that wouldn't pass health regulations in Canada/USA. But, let's not throw the baby out with the bath water.

Do we need drugs?
Obviously, the answer is "yes", unless you hold some twisted, Darwinian "only the healthy should survive" attitude. Otherwise, we've all been sick, and we've all benefitted from pharmaceuticals. I think we can all agree that some drugs are essential. If you are going into cardiac arrest, you don't want someone to prepare you an herbal tea. You want to be taken to a hospital to receive a drug that will restore the function of your heart and allow you to live long enough to make wiser lifestyle choices. The same is true with epilepsy. If you are in status epilepticus then you want to receive a drug that will stop your seizure as soon as possible. So, drugs are important and we need them.

What are some of the problems with drug companies?
One of the major problems behind drug companies is that they are held accountable to their shareholders (i.e., they need to make a profit). The average drug costs almost $1 billion US dollars to develop. This means roughly $1,000,000,000 of expense from the time you have the idea of developing a drug until the time that drug is available at your local pharmacy. Much of this expense occurs during drug testing (i.e., determining the safety and effectiveness of that drug). That is a LOT of money.

To protect their investment/intellectual property, drug companies patent their drugs for about 20 years. This allows them to sell that drug exclusively to try and earn back their investment. This is why new drugs are so expensive. Once the patent has expired, then other companies can make "generic" versions of the drug and sell it for much cheaper as they won't have spent the hundreds of thousands on research and development. So, the company has 20 years to make back their billion bucks. Another complication is that many of the drugs that a company tries to develop end up failing at some point along the testing process. They may prove toxic in animal studies. They may prove toxic in clinical trials. They may lack effectiveness in clinical trials. They may even prove toxic after they have passed all trials and the drug "makes it to market" (i.e., it's available at your pharmacy). This recently happened to Merck's COX 2 inhibitor, Vioxx®, which generated heart problems in some patients. This means that a company can spend hundreds of thousands of dollars and then be forced to abandon the drug. Yikes!

This puts tremendous financial pressure on drug companies. As a result, many drug companies have stopped/slowed the development of new, novel drugs needed in the treatment of serious, life-threatening diseases. Instead, most drug companies tend to focus on modifying existing drugs to make them less toxic. Also, because they need to worry about the "bottom line", many drug companies have focused simply on developing drugs that are used very commonly for non-life-threatening health problems-- which in my opinion, are the drugs we need the least. These are drugs like the proton pump inhibitors used to treat acid reflux or drugs used to treat indigestion. These are huge money-makers as they are so commonly used. They are drugs we take after a meal without even thinking about it. Although these drugs may be important to those who suffer from acid reflux, they rank low in the overall hierarchy as compared to the new drugs that we need to treat aggressive forms of cancer, for example.

So, drug companies have the ability to develop new drugs that are required for serious, chronic diseases, but they tend to be focusing on drugs that will bring them the most profit. This is understandable from an economic perspective, but less understandable from the perspective of someone who has 10 seizures a day and can't find a drug that helps.

What are possible solutions?
One of my more radical ideas is that the Government should be in charge of all drug development (instead of corporations). This would mean that there are no shareholders, in the formal sense. Of course, the public would then have to fund the drug development process, but it would eliminate the need to make profit. The Government would simply seek to regain the cost of the drug development, not the extra bit to put profit into the pockets of shareholders and pay CEOs huge salaries. Obvious disadvantages to this would be that drug development would occur much more slowly and there would be less diversity in the drugs that would be developed. This is just a way to develop new, important drugs for chronic, serious diseases that lack adequate treatment, without financially strapping those that need them.

The current system uses Insurance Companies to help buffer the cost of drugs, so that a $100 prescription might only cost you $10-20, depending on your plan. Of course, if you can't afford a plan/have no plan, then you are faced with the horrible choice of financial health vs. physical health. Something that is unimaginable to me, but something that many face everyday in the USA. Here in Canada, we are fortunate to have a National Health Care Plan that ensures that you will get many drugs for free, providing the drug in question is covered under the Drug Registry. Unfortunately, not all drugs are covered, which means you could end up having to pay for it under your insurance plan, or even out-of-pocket.

What about nutriceutical companies? A slight tangent"
Why don't the nutriceutical companies face the same degree of public distaste as drug companies? They are in the same business of selling drugs- just prepared and marketed in their galenical form. Let's be honest-- if you are taking something (e.g., a tea, a pill, a plant, a vitamin, etc.) that works to improve your health, then you are taking a drug (unless it is a placebo). "Vitamin C" is ascorbic acid. The active ingredient in white willow bark is acetylsalicylic acid (the pure form is sold as Aspirin®). The active ingredient, which is thought to yield mild antidepressant effects, in St.John's Wort is the chemical hyperforin. All this to say, if it works and isn't a placebo, then it is a chemical. The rest is a matter of marketing and a case of the wolf in sheep's clothing. What's scary, is that nutriceutical companies aren't (yet) as tightly regulated as the drug companies--> so they are allowed to sell chemicals without all the rules/regulations that drug companies face. When you buy 200mg of ibuprofen (e.g., Advil®), then it is 200mg. When you buy white willow bark, it's unclear and unregulated as to how much of the active ingredient (i.e., acetylsalicylic acid) is present. This is a problem.

Concluding thoughts
Well, the system isn't perfect. Not all drug companies are perfect either. Unfortunately, the system is set up to prioritize profit over "let's make drugs for diseases where they are most needed to save lives". That's what spawned my crazy idea of having Government in charge of drug development, but that has obvious down-sides too.

In the end, we need drugs. They are important in our health, and for many, they are required on a daily basis to keep us alive (e.g., those living with cystic fibrosis, cancer, heart disease, etc.). So, it's good that we have drug companies making these drugs for us.

Nutriceutical companies are no different from drug companies. What's scarier than that, is that they aren't regulated the same way that drug companies are -- and they should be! They also prioritize the bottom line, profit. That's why you are paying $25 for your bottle of fish oil.

I hope this has been helpful. I know some people feel very strongly about herbs/nutriceuticals being healthier than drugs. That said, this isn't a religion or belief system. These products can be studied by the cold, objective eye of science, so we aught to have a more objective point of view on them. Any chemical you take that changes the way your body works, be it a drug, a "nutriceutical", should be treated the same (i.e., read up on it, study whether it will interact with any drugs you are currently taking, tell your doctor that you are taking it, etc.) as it also has the potential to help you as well as harm you. Even foods can do this. Garlic, for instance, is full of sulphides (diallyl sulphide, for example), which act to inhibit drug-metabolizing enzymes in our liver.

Food for thought.

Kirk.

The Mysterious "Seizure Threshold"

2008-09-21T10:34:00.000-07:00

In the basic science realm you often hear epilepsy researchers refer to the "seizure threshold". Experimentally, this refers to the minimum stimulation required to trigger a seizure, be it an electrical stimulation, a chemical compound that stimulates the brain, an external stimulus such as a strobe light or noise, etc.

Every brain has a seizure threshold. Everyone can have a seizure if their brain is over-stimulated. Students have been reported to have "exam seizures". These are seizures as a result of lack of sleep, too much caffeine (or other drugs), high stress, etc.

Individuals with epilepsy, however, are thought to have chronically low seizure thresholds (i.e., their brains are more susceptible to being stimulated above their seizure threshold). I've made this simple illustration to show the concept of seizure threshold.

Anticonvulsant treatments (drugs, ketogenic diet, etc.) are thought to elevate the seizure threshold. The GABA drugs [e.g., phenobarbital* (Luminal®), primidone (Mysoline®), topiramate (Topamax®), diazepam (Valium®), tiagabine (Gabitril®), vigabatrin (Sabril®), clonazepam (Rivatril®)] raise brain levels of the inhibitory chemical GABA. This makes the brain less excitable. The sodium channel drugs [phenytoin (Dilantin®), carbamazepine* (Tegretol®), felbamate (Felbatol®), lamotrigine (Lamictal®), levetiracetam (Keppra®), pregabalin (Lyrica®), topiramate (Topamax®) and zonisamide (Zonegran®)] make neurons fire more slowly, therefore making the brain less prone to seizures. The ketogenic diet also makes the brain less excitable, although the mechanisms (i.e., "how) are less clear.

The concept of seizure threshold helps us understand both "why" and "how" the brain enters a seizure. Better understanding of what causes the seizure threshold to change may help us understand why the brain enters into a seizure.

Have a good day,

Kirk.

Epilepsy in a Nutshell Wordle

2008-09-15T14:15:00.000-07:00

My friend Peter Jamieson writes a blog about Ultimate Frisbee (a sport I spend too much time playing) called The Cultimate Opinion. He introduced me to Wordle, a program that surveys a website or list of words and generates a word cloud. Above is the Wordle for this blog.

The History of Diet to Control Seizures

2008-09-15T13:57:00.000-07:00

Here is a copy of the presentation I gave at the 2008 SACEC/UTERP Advances in Epilepsy Care Conference. It outlines a brief history of the use of diet in the treatment of seizures. Other talks given by experts in the field can be found on the SACEC website.

Questions? Comments? Something you'd like me to post on? Don't hesitate to contact me.

Kirk.

Society for the Advancement of Comprehensive Epilepsy Care

2008-07-14T06:24:00.000-07:00

The Society for the Advancement of Comprehensive Epilepsy Care (SACEC) and the University of Toronto Epilepsy Research Program (UTERP) are hosting an Advances in Epilepsy conference this summer. The morning session will include advances in epilepsy care talks, while the afternoon session will include advances in epilepsy research talks. The conference will feature speakers for persons with epilepsy, their families, and epilepsy researchers.

Please join us and invite family/friends to attend as everyone is welcome!

Date: Saturday, August 16, 2008
Time: 9am to 5pm (Registration begins at 8:30am)
Location: Hart House Debates Room, University of Toronto
Admission: Free! Refreshments and a light lunch will be provided!

Please click on the program (left) for details.

Ketogenic Diet - Potential Mechanisms

2008-07-07T18:33:00.000-07:00

OK, so I've mentioned that I study the anticonvulsant effects of the ketogenic diet. I thought I'd review some of the more popular theories on "how the diet works". Although the exact mechanism isn't clear, we know that shifting the body's metabolism toward using fats (instead of carbohydrates) plays a critical role. This causes numerous adaptations in the body, which may contribute to the diet's anticonvulsant effects. I apologize if some of this gets "thick"- it would take a 30 page post to describe everything in non-scientific terms. Plough through and let me know if I can clarify anything, or if you have any general questions.

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KETOGENIC DIET: PROPOSED MECHANISM OF ACTION

The Brain Lipids Theory
Clinically, the ketogenic diet (KD) has been shown to increase blood cholesterol and triglyceride levels. It was hypothesized that this increase in lipid levels contributes to the anticonvulsant actions of the KD. One study, for instance, suggested that lipids are incorporated in the brain and subsequently alter the structure and function of neuronal membranes, causing changes to membrane fluidity, ion channel functioning and receptor-ligand affinities. They suggest these changes have anticonvulsant effects.

A major problem with this hypothesis is that not all KDs elevate lipid levels in a similar fashion. For example, the medium chain triglyceride KD does not elevate blood triglyceride levels, but it still has good anticonvulsant activity.

The pH Theory / Keto-acidosis Theory
"Acidosis" (acidification, or pH lowering in the brain) was first hypothesized as the anticonvulsant mechanism of action for the KD in 1931 by Bridge and Iob. When started on the KD, the patient’s metabolism switches from the using carbohydrate to using ketone bodies as an energy substrate. The ketone bodies acetoacetate and beta-hydroxybutyrate, which are mild acids, were hypothesized to lower blood pH in patients on the KD. This decrease in pH was hypothesized to confer the diet’s anticonvulsant effects. For example, low pH has been shown to inhibit pH-sensitive NMDA-type glutamate receptors (excitatory receptors in the brain) and pH sensitive gap junctions (these are electrical synapses, vs. chemical ones), causing a decrease in neural excitation.

The acidosis hypothesis has largely been abandoned, however, as clinical studies have failed to show long-term, KD-induced changes in pH. Animal studies have confirmed this finding by demonstrating that there is no change of brain pH in the animals fed a KD.

The GABA Shunt Theory
The GABA shunt theory suggests that the KD leads to higher levels of GABA (the brain's major inhibitory chemical) in the brain. It has been argued that the KD causes increased levels of α-ketoglutarate (this is a chemical precursor to GABA) in the brain. Excess α-ketoglutarate can be used to produce more GABA via the GABA shunt. Elevated GABA levels would then elevate seizure threshold in the brain, reducing the brain's susceptibility to seizures.

One of the strongest lines of reasoning opposing the GABA shunt theory is that the KD is often successful in patients that have already failed the anticonvulsant medications that elevate GABA levels in the brain -- e.g. phenobarbital (Luminal®), primidone (Mysoline®), topiramate (Topamax®), diazepam (Valium®) and tiagabine (Gabitril®). Therefore, if GABA agonists do not control the patient’s seizures and the KD does, it would not follow logically that the KD works by elevating GABA levels.
Another argument against the GABA shunt theory is that animal studies have shown that GABA levels are not increased in the brains of rats fed the KD.

The Energy Substrate Theory
Anaerobic metabolism—or metabolism in the absence of oxygen—occurs when glucose molecules are broken down into two pyruvate molecules outside of the mitochondria. This process, known as “glycolysis”, yields a small but immediately available source of energy for the cell (~8 moles of adenosine triphosphate per mole of glucose, ATP --- ATP is the cell's form of energy). Aerobic metabolism, however, requires oxygen and occurs in mitochondria via the Krebs cycle and the electron transport chain. Under normal conditions, most of the brain’s energy is derived from the aerobic oxidation of glucose, which provides higher levels of ATP (~30 moles). When dietary carbohydrates are scarce—such as in individuals on a KD—the brain begins to use ketone bodies for energy. Ketone bodies can be converted to acetyl CoA, which can subsequently be used in the Krebs cycle and the electron transport chain to make ATP. The conversion of ketone bodies to acetyl CoA, however, does not release ATP like glycolysis does.
Normally, glucose serves as the preferred energy substrate for the brain. In patients fed a KD, however, ketones can supply the brain with up to 60% of its energy needs. A study in 2003 hypothesized that glucose generates both “slow” energy (via Krebs cycle) and “fast” energy (via glycolysis). Ketones, however, yield only “slow” energy (via Krebs cycle). The energy substrate hypothesis suggests, therefore, that although ketones provide sufficient energy for regular brain activity, they do not provide enough “fast” energy to sustain seizure activity.

This theory is currently receiving widespread attention. I believe that this theory is getting very close to the heart of the matter. Unfortunately, this is also the most complex theory. I tried to give some detail without swamping those of you that aren't biologists. Essentially, there is something about burning fat for fuel (in the brain) that beats burning carbs when it comes to suppressing seizures.

The Ketonemia Theory & Acetone Hypothesis
Three ketone bodies, beta-hydroxybutyrate (βOHB), acetoacetate (ACAC) and acetone are significantly elevated in patients on the KD. The ketonemia theory postulates that ketone bodies themselves are anticonvulsant, and that the KD is effective because it elevates ketone bodies in the blood and brain. No specific mechanism of action, however, has been suggested (i.e. no “receptor” is known that ketones might bind, to confer their anticonvulsant activity. Some clinical studies and animal studies have reported significant correlations between levels of βOHB or ACAC and seizure protection. Other studies, however, have reported a lack of correlation between βOHB or ACAC and seizure protection. At present, the relationship between ketosis and seizure control remains unclear.
Opponents to the ketonemia theory have argued that βOHB or ACAC are elevated rapidly in patients on the KD, but seizure control can take some weeks to develop (although, it has been suggested, however, that it may take the brain a few weeks to adjust to the elevated ketone bodies before anticonvulsant effects are seen).

Historically, however, researchers have neglected the possible role of acetone in the anticonvulsant mechanism of the KD.
Acetone is a ketone elevated in patients on the KD (it's also the "active ingredient" in nail polish remover). The idea that acetone has anticonvulsant properties was first proposed by Helmholtz and Keith in 1930. The idea was then ignored for some years. Recently, however, it was reported that acetone was elevated in the brains of children on the KD. Also, a Toronto-based research group found that acetone had a wide spectrum of anticonvulsant effects in various seizure models. This led to the “acetone hypothesis”, which states that acetone plays a role in the anticonvulsant mechanism of the KD.

There are two lines of evidence for the acetone hypothesis. Firstly, acetone is elevated in fasted patients and patients fed the KD. It is known that both fasting and the KD have anticonvulsant properties. Secondly, acetone has been shown to have a broad spectrum of anticonvulsant action, similar to that of the KD, using experimental seizure models.

People are reluctant to accept this theory as we've come to know acetone as "glass cleaner" or "nail polish remover". However, our bodies continually make it (naturally) and it has a very apparent effect on brain activity when it accumulates in the blood. What isn't known, however, is whether elevations in blood acetone correlate with seizure suppression in kids on the KD.
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Is there anything that you'd like to know about epilepsy?
If so, please let me know and I'll do a post on it.

Have a great day,
Kirk.

Destiny Maker

2008-06-12T12:07:00.000-07:00

Interested in supporting a race to find the cure for epilepsy? Me too.

Glenn Fenster has begun another epic bike journey around the U.S. and Canada to raise money and awareness for epilepsy. Glenn's son Nyle has epilepsy.

To find out more, to support Glenn in his journey or to see whether he'll be coming through your neck of the woods, please visit: Destiny Makers.

I hope you are all well.
I successfully defended my PhD this week. It was the first of 2 steps in completing my degree. Pretty exciting.

Kirk.

Jack's Lemonade

2008-05-27T05:50:00.000-07:00

This past weekend (Saturday, May 24th) saw the wonderfully successful re-opening of Jack's Lemonade Stand. Jack has drug-resistant epilepsy, but has gained good seizure control on the ketogenic diet. Being a remarkably selfless 5-year-old, Jack decided that he wanted to help other kids who are sick, so he and his parents came up with the idea of opening a Lemonade Stand to raise funds for SickKids Hospital in Toronto, where Jack is being treated. This year marked the second annual Jack's Lemonade Stand, and the event was enormously successful, raising $40,000! So, please join me in congratulating Jodi and David (Jack's parents), Jack and Christopher (Jack's younger brother) on such a great job in raising both funds and awareness for epilepsy.

For more information on SickKids or Jacks Lemonade, please visit the links above.

A Few Things: CURE and the Ketogenic Diet

2008-05-09T20:21:00.000-07:00

It has been a month since my last post. I apologize. I have been hunkered down writing my PhD thesis, which I handed in today. It is soon time to go back into hiding to study for my thesis defense- which takes place in a month's time.

CURE
This is a quick post, but I just wanted to pass along some information on CURE (Citizens United for Research in Epilepsy). CURE is a not-for-profit organization that is dedicated to supporting those who are trying to cure epilepsy. They raise funds for research and work to increase awareness of the disorder.

I met the president of CURE at a conference in Arizona. They are really doing great work. Check out their website (link above) to learn more about epilepsy and what is being done to cure the disorder.

KETOGENIC DIET NEWS
Changing gears a bit -- a recent paper by Dr. Helen Cross's lab in the U.K. just came out in Lancet Neurology. It is the first paper to use a randomized control trial on the ketogenic diet. This is very exciting news for those of us who are firm believers in the clinical efficacy of the ketogenic diet, and having to listen to nay-sayers that there is no solid, clinical proof.

The results of the study show that about 1/2 of the patients had a greater than 50% reduction in their seizures on the diet. About 10% had a greater than 90% reduction in their seizure frequency. These numbers are very similar to those commonly cited in the literature. This may not seem "amazing" -- but keep in mind that these reductions in seizure frequency are happening in people that have already failed drug therapies.

Anyway, a bit of a mixed bag there.
I hope you are all doing well.
Thank you for continuing to read my blog. My posts will be sporadic over the next few months as I finish up my thesis --- but eventually I'll get around to posting more regularly.

Kirk.

Ketogenic Diet Conference

2008-04-09T07:43:00.000-07:00

Well, I just got back from the 1st International Symposium on the Dietary Treatment of Epilepsy and Other Neurological Disorders. The conference was held in Phoenix, AZ. I'll admit right off the top that this was the best conference that I've ever attended. The quality of science was stellar and, for a refreshing change, there was a tangible level of emotion that you don't normally get at science conferences.

The first morning of the conference we listened to a great intro talk on the History of the Ketogenic Diet (KD). This is a high fat, low carbohydrate diet used to treat drug-resistant seizures. The KD used to be one of the main treatments for epilepsy until the introduction of the anticonvulsant drugs in the late 1930s. In 1994 NBC Dateline ran a story on Charlie Abrahams, the son of the Hollywood movie producer Jim Abrahams, who became seizure free on the KD after many years of uncontrolled seizures. A few years later, Jim Abrahams directed a made-for-tv movie entitled "First Do No Harm", starring Meryl Streep. This, largely, led to the resurgence of interest in the KD.

At the conference both Charlie and Jim spoke about the impact that the KD had on their lives. Charlie is currently a straight-A student in school. At the end of the conference we heard a few very touching talks. One was given by a mother whose son developed seizures at a young age. They started with the anticonvulsant drugs, but the first few drugs didn't work. The mother told her neurologist that she had seen Jim Abrahams' NBC Dateline show on the KD and wondered whether they should try her son on the KD. Her neurologist gave a very common response, which was to state that the KD is very tough to adhere to/administer and that it was largely experimental etc. The neurologist suggested that they try more drugs. This conversation recurred a few times as they cycled through many anticonvulsant drugs. Eventually, the son had a catastrophic seizure which left him mentally handicapped. The mother finally convinced the neurologist to try the KD, and the son became seizure free within a few days and began showing some cognitive improvement. Naturally the mother was enraged that they were discouraged from trying a treatment that could have prevented the brain damage caused to her son. This story was a powerful reminder that parents really need to listen to their "guts" and aggressively pursue new treatments if the conventional ones aren't working.

Something to keep in mind is that the first drug has a 75% chance of completely controlling your seizures (on average, and depending on seizure type). The chance of the second drug working if the first one fails is significantly reduced. The chance of a third drug working when the first two didn't is almost 0%. At this point you are faced with a decision. You can continue trying more drugs, which are unlikely to work but simple to take - OR - you can try something that requires significantly more effort/energy but has a significant chance of reducing seizures. The KD's "specialty" is stopping seizures in patients that have failed the anticonvulsant drugs. Although the numbers vary from study to study, about 1/3 of patients will have a >90% reduction in their seizures on the KD, another 1/3 will have a >50% reduction of seizures on the KD and the final 1/3 will have a <50% reduction in seizures on the KD.

Although the KD does not work for everyone, this weekend's conference served as a sobering reminder that the diet is certainly worth trying if your seizures fail to respond to one or two anticonvulsant drugs. The potential benefits of the KD far outweigh the difficulties associated with the diet.

On the last day of the conference we were fed a ketogenic diet lunch (soy wrap with roast beef and lettuce, soy based dipping sauce with sesame oil, some mysterious white dipping sauce (mayo?) and a cabbage slaw). Nobody knew until we were told later in the day ...

Kirk.

Epilepsy and Driving

2008-03-24T20:51:00.000-07:00

It has been a long time since my last post. Apologies for my absence. Things are very busy right now as I am wrapping up my thesis.

I was in Manitoba this past weekend at a family gathering. We were talking about heart disease and how some individuals with heart disease can be a real risk on the roads (eg, they could faint from poor blood flow or even have a heart attack behind the wheel). This raised the issue of whether or not people with epilepsy should be allowed to operate a motor vehicle.

The laws vary from country to country, but in general if you are diagnosed with epilepsy you lose your permit to operate a motor vehicle until you have been seizure free for a set period of time (usually a year or two). My supervisor often mentions that individuals with epilepsy do show an increased risk of motor vehicle accidents. However, the number of accidents for this group is not nearly as high as the accident numbers for individuals with cardiovascular disease. To top it off, neither of these groups is anywhere close to the "most at risk" population for motor vehicle accidents, which is young male drivers.

I think of insurance companies as being very shrewd and number-oriented (ie, all of their rates/policies are determined by statistics). If this were really true then young males wouldn't be allowed to drive. Instead, insurance companies simply charge young male drivers much higher insurance rates. I wonder why they can't simply do the same with other "at risk" populations, such as those with heart disease or epilepsy. Either way, they should be consistent.

Food for thought.

Have a good one.

Kirk.

Diagnosing Epilepsy

2008-03-08T06:38:00.000-08:00

Some of this information has been presented in various posts below, but I wanted to add it here in the context of diagnosing epilepsy.

Epilepsy is diagnosed upon having more than one unprovoked seizure. Identifying the type of seizure is critical in deciding the appropriate treatment. It is a good idea to see an epileptologist to increase the likelihood of accurate diagnosis and treatment.

Types of Epilepsy

Symptomatic Epilepsy
Approximately 30-40% of patients with epilepsy have “symptomatic” seizures. These are seizures associated with a specific structural abnormality in the brain. Such abnormalities can include tumours, brain injury, infections, scars, and blood vessel malformations (Browne & Holmes, 2001). Symptomatic epilepsies are the hardest to treat and are often drug-resistant (Kwan & Brodie, 2000).

Idiopathic Epilepsy
Sixty to seventy percent of patients with epilepsy have “idiopathic” seizures. These are seizures that occur in an apparently normal brain. Idiopathic seizures are thought to be caused by a subtle biochemical or ionic imbalance, probably inherited. These seizures tend to respond favourably to anticonvulsant drugs.

Types of Seizure
Seizures are classified as “partial” (focal, local) or “generalized” (global).

Partial Seizures
Partial seizures, initially, involve only a portion of the brain. The three forms of partial seizures are simple partial, complex-partial and partial seizures that secondarily generalize.

Simple partial seizures are usually non-motor seizures that involve certain sensations (e.g. flashing lights, odd smells, strong anxiety). Those who experience a simple partial seizure remain conscious and alert throughout the seizure. These seizures typically last less than two minutes. Simple partial seizures may secondarily generalize (spread) to other brain structures.

Complex-partial seizures begin as a focal or “partial” seizures and spread to become partially generalized, which causes impairment of consciousness. The patient is not unconscious, but is unaware of the environment around him. Impairment of consciousness is what makes the seizure “complex”. Complex-partial seizures are often preceded by an “aura”, that warns the patient the seizure is going to occur. The aura is actually the simple partial seizure that triggers the complex-partial attack. During the seizure, “automatisms” may occur. These non-reflex movements can involve oral automatisms (e.g. chewing, lip smacking, and swallowing) or “ambulatory automatisms” (e.g. rubbing or picking hand movements, running or walking). Patients have no memory for the period of the seizure. Complex-partial seizures typically last between 30 seconds and 2 minutes but can leave the patient mentally hazy or confused for hours.

Generalized Seizures

Generalized seizures involve the entire brain. There are various types of generalized seizures, including absence seizures, myoclonic seizures and tonic-clonic seizures.

Absence seizures are characterized, behaviourally, by a sudden loss of consciousness accompanied by brief staring spells. Electrographically (ie, the pattern you see on the EEG), absence seizures are characterized by a three-per-second spike and wave discharge. Absence seizures tend to be very short (3-10 seconds) and they can occur many times in a day.

Myoclonic seizures involve a sudden jerking movement of the body. These seizures only tend to last a second or two but can recur frequently.

Tonic-clonic seizures are what many people think of when they hear the word “epilepsy”. They are seizures where the individual is unconsciousness and experiencing a convulsions (full body involuntary motor movements). The words “tonus” and “clonus” apply to the muscle actions involved in the convulsions. Clonus refers to a rapid succession of muscle contraction and relaxation, leading to jerking-like movements. Tonus refers to a constant state of contraction. This usually causes the limbs to stiffen and to flex or extend. Tonic-clonic seizures tend to last between one and two minutes, although they may last longer.

What Does This Mean for You?

It is important that you continually seek consults, tests, etc. until you can answer these three questions with confidence:

1) What type of epilepsy do I have? (partial seizures, absence seizures, etc.) If this is unclear, then the type of drug you need is unclear. This question can be answered through careful description of your seizures combined with EEG. Other tests may also be required.

2) What are the appropriate/best drugs for this seizure type? The first treatment option is almost always drug therapy. It is important to be prescribed the correct drug for your seizure type. Some drugs can make your seizures worse.

3) Are you a candidate for neurosurgery? This is the only potentially curative treatment. It is important to know if you may be a candidate. The test to determine this is admission to an EMU (epilepsy monitoring unit). You will be hospitalized and hooked up to an EEG and monitored daily until you have a seizure.

Things have been really busy, so I haven't been posting as much lately. Nonetheless, I'll continue to try and get something up every week or so.

Have a good one.
Kirk.

Kids Vaccine Linked to Fever and Seizures

2008-02-28T13:28:00.001-08:00

An recently published study shows a potential link between the ProQuad vaccine and seizures. In brief, the article suggests that kids who got the ProQuad vaccine were twice as likely to develop febrile seizures.

Here's a link to a good review of the article.

Have a great week,
Kirk.

Parenting a Child With Epilepsy: Part 2

2008-02-23T15:49:00.000-08:00

We are lucky to have a 2nd post by Kristi, who is the mother of a young boy with epilepsy. Here is "Part 2" of her post on parenting a child with epilepsy.
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We have entered a stage of holding with our son’s epilepsy, which we like to call behaviour management. He is mostly seizure- free, with only break through seizures that we have to worry about. They are predominantly myoclonic jerks, which means they are less dangerous than the drop seizures or tonic clonic seizures he has also experienced. That said, we are now in less of a crisis- management stage, and are trying to maximize his developmental potential during this pre- Kindergarten time.

We have self- referred to Occupational Therapist, Physical Therapist, Early Childhood Intervention play therapist, Speech and Language pathologist, etc. We had to self- refer because when we see our neurologist, he remarks that Sam is doing really well. And he is, compared to children having many seizures a day. However, the meds he is on are wreaking havoc with his personality, and with his ability to cope, to listen, to be still- all very important school skills. He is stiff and awkward, he has a hard time regulating his voice level, he struggles with eating neatly. He obsesses about different foods, different activities, and sometimes seems to get ‘stuck’ asking for the same thing many times in a few minutes, even if he has been told ‘no’ or ‘wait.’ This is exacerbated when he is hungry or tired. At home, we are able to cope with these things, though being a busy household, it is often a matter of juggling between my husband and I. Going out in public is another matter.

As with any child who has special needs, we need to really plan our life and activities around our sons’ ability to cope in those situations. His reaction depends on the time of day, and what kind of activity it is. He gets over- stimulated and overwhelmed easily. He melts down when he can’t get his own way. He yells, cries, runs. He is five, but behaves like he is two in his ability to cope, and so we manage, but amid stares of judgment. I often wish we could just stay home, or at least tattoo: “Our Son Has Special Needs” on our foreheads. We live in an increasingly understanding society, where children with special needs are almost integrated, yet in a small town, we stand out.

With all of this stigma and judgment comes hurt and anxiety, but mostly just a desire for our son to lead a normal, five year old life. To that end, we strive to enroll him in activities we otherwise include him in. It just takes more planning and preparation on our part as his parents to help him be successful. As an example, he loves music, so we signed him up for a Music for Young Children 10- week class. By week eight, he listened and participated for half of the class. So this is obviously a process. And while I felt like the other parents, and even some of the children were judging my son’s behaviour, he was oblivious. It was me who felt this hurt and exclusion.

As parents who have become almost experts at advocating for our child, we signed up for a very comprehensive assessment at a Kinsmen Children’s facility in Saskatoon. After waiting almost as year, and making phone calls, just to be sure we were still on the waiting list, we got in. And the whole time we were on the list, and then after we got our appointment card, in the time leading up to it, we worried. We worried because we know there are many children who need services just as badly, if not more than our son. We were concerned that our perception of his needs were just that of overwrought, exhausted parents who didn’t have a real clue where he should be at developmentally. We, as is common with parents of special needs kids, were worried that we were overreacting. As it turned out, he should be seeing his OT/PT twice as often as he is, doing a regular physical therapy routine daily at home and in a random sampling of five year olds, he would be in the bottom percentile for development, skill and ability. He was likened to a three- year old.

So we should not have doubted our ability to assess our own child. We should have ignored our neurologist’s five minute assessment and pushed harder to get our son’s needs assessed. We should have realized that there is a fine line between advocating and being pushy, and that generally, we are not pushy people. We should have known that we spend a disproportionate amount of our time meeting our son’s needs compared to our other children’s needs. We should have trusted our parental instincts and gut feelings. Parental a child with epilepsy can be full of “we should haves,” because there is no handbook. And with the amount of seizure disorder types, the lack of firm diagnosis in many cases, and the variety of anticonvulsants used there are even few resources that seem to apply.

Again, we need to look objectively at our son- how easy is that to do? As other parents of kids with epilepsy, you know it is difficult. He IS doing well compared to so many other ill children out there, with far more serious and life- threatening disorders and illness. And we want to raise the standard high, until he gives us reason to lower it. We want to reach for the stars with our son, just as we do with our daughters. And we do have hope. We have a great team who work with our son and with us, to maximize his potential. We have a support system of family and friends to rival no other, one that really does want to know how we are doing, what is current and how they can help. And my husband and I have each other. We seem to work better as a team when we are under stress. I often wonder if it would all fall apart if we had no ongoing stress, but with five kids, a farm and everything that goes with that, a lack of consistent stress anytime soon seems unlikely! The other thing we have, is our loving, boisterous, energetic son, who always has time for a hug and always wants to snuggle at bedtime. That is the best therapy of all.
-Kristi

Good Article

2008-02-19T11:07:00.000-08:00

Here's a link to a nice article that I thought you might enjoy. It's a good summary on epilepsy, current epilepsy research and what the future might hold.

You can find the article here.

Have a great day.

Kirk.

The Gamma Knife

2008-02-18T06:10:00.000-08:00

Gamma Knife for the Treatment of Epilepsy.

I recently attended the 62nd Annual meeting of the Eastern Association of Electroencephalographers. One of the very interesting talks was given on the use of the gamma knife for the treatment of seizures. "Gamma knife", sounds futuristic, right? Well, this technology was actually developed by Lars Leksell (Sweden) in 1967. The technology is pretty expensive and not many centers have a unit. Canada currently has 3 gamma knives country-wide and the USA has about 90.

What is the Gamma Knife?
The gamma knife does not actually involve a knife. In fact, it is a non-invasive form of surgery insofar as there is no cutting or removal of skull. It is a form of “radiosurgery”. Radiosurgery is basically the use of radioactivity to kill tissue.

The gamma knife contains 201 radioactive cobalt sources. Cobalt gives off gamma rays, and these rays are focused toward a common, intersecting point. This point is called the “active zone”, where a very small lesion is created by the radiation (see picture).

How is the Gamma Knife Used in Epilepsy?
The gamma knife is normally used to treat vascular malformations in the brain, or to "blast" small tumors. The rationale for using it in epilepsy is to destroy a small group of cells that are thought to be causing the seizure activity. This means that the use of the gamma knife surgery is limited to focal seizures.

Advantages
- Discharged same/next day (no hospitalization required)
- Non invasive (no craniotomy – ie, opening of the skull)
- Can access the deep structures of the brain that are hard to reach surgically (each of the 201 ray beams is not damaging alone, but the aggregate of them in a single focus is. Therefore, you can pass rays through the skull, but it's only where they intersect that a lesion can be created - allowing deep structures to be lesioned without opening the skull)
- Effective against lesions in eloquent cortex

Disadvantages
- Often takes 2-30 months before the effects become apparent (the gamma rays don't immediate destroy the tissue. Rather, they seem to set-into-motion a series of events that lead to the tissue's death)
- Only effective at making small lesions
- Doesn’t give you a specimen (tissue sample) to study and analyze for pathology
- Can cause transient edema (swelling)

Possible Complications
Nausea 2-10%,
Seizures 2-8%
Edema (swelling) 2-8%
Development of tumors from radiation (this has happened, but very very rarely - about 3/200,000)

Conclusions
Irradiating the brain seems a bit scary, but the beams are very focused to the active zone and aren't thought to cause any harm to other brain/body areas. Of course, the alternative to gamma knife surgery is open brain surgery, which has its own risks and tends to make people very uncomfortable. That said, brain surgery remains the gold-standard for the removal of an "epileptic focus". This use of the gamma knife in the treatment of epilepsy is not well established and is only an option for patients with focal seizures that stand to be improved by destroying a small brain region.

It is "Family Day" here in Ontario - it's a new provincial holiday.
Happy Family Day everyone.

Kirk.

Photo credit: www.karmanos.org

Parenting a Child with Epilepsy: A Journey

2008-02-09T16:10:00.000-08:00

Today we are lucky to have another guest post. Kristi and her husband are farmers in rural Saskatchewan and proud parents of five wonderful kids. Among her many accomplishments, Kristi instructs a taekwondo club and spends her spare time training for her 5th degree black belt.

Three years ago Kristi and her husband learned that their son has epilepsy. It has been a life-changing experience for them and their family. Here is the story of her journey so far.

Part 1.
Parenting a Child with Epilepsy: A Journey

A parent’s job, by definition, is to love, nurture, protect, care and advocate for their children. As a parent of a child with epilepsy, some of those duties become complicated and out of focus. Of course, we love our son. But now, we also love him with lots of time and energy spent on handling his seizure disorder. We love him with trips to the city for appointments: specialists, therapies, regular check-ups, tests; two hours each way, and of course fries on the way home. We love him with unexplained tight hugs, tears and time ... lots of time; Sometimes time to the exclusion of time with his sisters. We love him when he is crying as they jab him again for more blood work- we love him and we hold him down. We love him when he is overwhelmed, tired and unable to process, when he is freaking out yet again in a public place. We love our son in ways we never expected to have to love a child.

As for the care and advocacy part- it can become a full time job. We research, inquire and hound our sources of information time and again as something new pops up and we question again, whether the behaviour is within the realm of ‘normal’. I think, as a parent of a child with a seizure disorder, we spend an inordinate amount of time asking questions, many which can not be answered. The hard part of all of this is that no matter how much we love our son, how much we try to protect him and get the best care, treatment and therapies for him, we cannot change the outcome of this. Our son has an atypical seizure disorder. He can have a variety of seizures within a small amount of time, and there is no predictable pattern. He has been tested for the usual culprits- Lennox Gastaut being one of them, and after sending bits of muscle and tissue, cerebral spinal fluid, blood and bone all over North America, we have no more information than we had when we started; Just a son with less bone, muscle, tissue and an innate fear of hospitals. Along with the seizure disorder, our son has a condition called Chiari Malformation type II. So he has had brain/spinal surgery along with the epilepsy stuff. He had a skilled surgeon and a wonderful follow up MRI, but there will always be lurking doubts and concerns, fear that he could one day start to lose mobility.

The most disconcerting and disheartening fact of all of this, is that there are no absolutes. Our daughter has a bladder condition, one she will likely grow out of; one that can be seen on tests and measured and handled without pharmaceuticals that have devastating side effects. In effect, she has a plumbing issue- and one that is easy to treat. Our son has a computer problem- a bug, a virus, a cookie enabled somewhere in his brain. And no matter how many ways they look at it, they can give us very little more information than our first terrifying visit to the paediatric neurologist where we first heard the term ‘epilepsy’ with regards to our son. He was two. And while millions of dollars every year is spent on epilepsy research in North America alone, so far, they have only been able to churn out drugs that may or may not have any effect on seizures. And with the drugs comes a cost no one is really willing to address, because they work, sometimes. While this may all seem very demanding- the mother in me wants to demand that we Find Better Drugs! Especially with recent reports that a number of anticonvulsant drugs are linked to higher rates of suicide.

Ultimately, this is all a journey. One my husband and I, not to mention our son, who is five now, were not prepared for. One we find that allows us to get complacent for only very short amounts of time before we must get up, research, act and question once a again. Please join me on this journey and we can discuss together this anomaly called epilepsy and its effects on the life of the person with epilepsy, their family and caregivers.

-Kristi

Anticonvulsants and Suicide

2008-02-03T09:36:00.000-08:00

Suicide can be a taboo subject, but the purpose of this blog is to provide important information to those living with epilepsy. This means that "taboo" goes out the window.

Anticonvulsants May Increase the Risk of Suicide and Suicidal Thought
On Jan 31st, 2008 the FDA (Food and Drug Administration) announced that those taking the anticonvulsant medications are twice as likely to have suicidal behavior or thoughts of suicide (0.43%) than those taking placebo (an inert substance; 0.22%). This increase in suicidal thought and behavior seemed to be a general finding that was not specific to a particular age group, race, or gender group.

The drugs that were studied are
* Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
* Felbamate (marketed as Felbatol)
* Gabapentin (marketed as Neurontin)
* Lamotrigine (marketed as Lamictal)
* Levetiracetam (marketed as Keppra) [Patient Information Sheet]
* Oxcarbazepine (marketed as Trileptal)
* Pregabalin (marketed as Lyrica)
* Tiagabine (marketed as Gabitril)
* Topiramate (marketed as Topamax)
* Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
* Zonisamide (marketed as Zonegran)

What Does This Mean for You?
The FDA states that: "those currently taking or starting on any antiepileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression".

My thoughts are that the anticonvulsant drugs are essential for many individuals with epilepsy (or those taking these drugs for the treatment of bipolar disorder or neuropathic pain, etc.). All drugs have risks associated with them, and those risks must always be weighed with the potential benefits of the drug (e.g., seizure control). Whenever taking medication, always be mindful of the potential risks and always looking for changes in behavior.

The FDA recommends
- Do not make changes to your drug regime without talking to your doctor first
- Pay close attention to any changes in mood and behavior. These changes can happen quickly.
- Be mindful of the suicide warning signs. Some of these signs are:
---> talking about suicide or hurting yourself
---> withdrawing from your social group (friends, family, etc.)
---> talk of death and dying
---> giving away valued possessions

If you notice these changes in mood and behavior, please contact your doctor.

The FDA is asking that doctors begin letting their patients know about this finding. Make sure your doctor is letting his/her patients know!

The FDA alert can be found on this page.

Kirk.

What are the Unmet Medical Needs for People with Epilepsy?

2008-01-31T09:27:00.000-08:00

I was recently handed this quarter's copy of "The Brain Wave". On page 5 it has quotes from some of North America's top epileptologists. Here are their thoughts in response to the question: "What are the most important unmet medical needs for people with epilepsy?".

"Decreasing stigma and creating environments that optimize learning and employment ..."

"... a drug, device or procedure that will stop seizures in patients with intractable epilepsy. We have many new drugs available, with many favorable properties, yet no real advance in the number of people who become seizure free. Improvement in seizures is good, but seizure freedom is always our goal."

"The hidden toll of epilepsy - identifying the side effects of medication."

"... comprehensive care and evaluation for the child with epilepsy and other neurological or school difficulties ... Taking care of the child with seizures who also has ADHD, or migraine, or learning difficulties, or mood disorder, or a sleep disorder requires appropriate assessment which can be challenging in the office setting with short time for patient visits. Individualizing the treatment for the epilepsy and these other diagnoses is critical for the success of treatment."

Let's get interactive! What do you think are the most important unmet medical needs for people with epilepsy? What about non-medical needs?

I think the neurologists cover the "medical needs" really well. In terms of non-medical needs - I would say that epilepsy education is an area that needs significant attention. At the very least, it has to be taught in-depth to teachers, and emergency personnel (e.g. police, EMTs, firefighters, first responders, etc.). They should all be able to recognize the main seizure types and they should all know seizure first aid. I would go a step further and introduce epilepsy education to the grade-school curriculum. It would ensure a solid base of knowledge and could go a long way towards decreasing the stigma associated with epilepsy.

I'd love to hear your thoughts. Please comment below.

Kirk.

Reference: "The Brain Wave", Volume 28, 1st Quarter, January 2008.

Take Your Omega-3 PUFAs

2008-01-25T07:01:00.000-08:00

What are PUFAs?
PUFAs, or polyunsaturated fatty acids, are long-chain fatty acids that have 2 or more "double-bonds". This is a bit of molecular mumbo-jumbo, but essentially it means that these fats are liquid at room temperature (as well as at body temperature). This is in contrast to saturated fatty acids (found in butter and lard, for example), which are more solid at room temperature.

Omega-3 PUFAs
These are essential fatty acids. This means that, like vitamins, our body doesn't make them on its own so we need to get them from our diet. Examples of Omega-3 PUFAs are alpha-linolenic acid (ALA), eicosapentaenoic acid (EPA), and docosahexaenoic acid (DHA).

We can get ALA from some grains, such as flax seed. EPA and DHA, however, are most abundant in cold water fish (eg, salmon, anchovies, mackerel, etc.). Those that don't get a lot of fish in their diet are likely not getting their daily required intake of Omega-3 PUFAs. This realization has led to a boom in the sales of PUFA supplements, which you can get at your local health food store or drug store (they are all fairly similar despite their advertising claims- just make sure they state that they have filtered out the heavy metals, such as mercury).

Why Take PUFAs?
Omega-3 PUFAs play a critical role in brain development and health. These fats are used to make our cell membranes. So, for normal, healthy function we need to be getting our PUFAs. Omega-3 PUFAs have been shown to have beneficial effects in many disease states/disorders. For example, they have been shown to reduce the risk of coronary heart disease.

Omega-3 and Epilepsy
There are several studies examining the effects of Omega-3 PUFAs in epilepsy. Basically, the results are highly mixed. It seems clear, however, that Omega-3s have neuro-protective effects. In epilepsy, a recent clinical study showed that when patients were blind to their treatment, PUFAs did not decrease their seizure frequency. When they knew they were taking PUFAs, however, 80% of patients showed a significant reduction in their seizures. So, the jury is still out whether PUFAs have anticonvulsant effects. What is clear is that they are important fats to have in our diet and supplementation should be done if you aren't eating a lot of seafood.

It is recommended that we take 500mg-1000mg per day of DHA and EPA. I tend to eat vegetarian, so I get lots of green veggies, grains and nuts. This takes care of my ALA intake. I don't eat any fish, however, so I take Omega-3 (EPA and DHA) supplements (1000mg/day). It's a good idea to supplement whether or not you have epilepsy. For individuals with epilepsy, it won't hurt you and there's a chance it could help -- so for $60/year (cost of pills) it's a worth-while investment.

Have a great weekend everyone.

Kirk.

References
Bromfield et al, 2008 Epilepsy and Behavior (Clinical trial)
http://en.wikipedia.org/wiki/Omega-3_fatty_acid (I don't normally site Wiki sources, but Wikipedia has a great write-up on PUFAs)

Febrile Seizures

2008-01-21T05:25:00.000-08:00

What are febrile seizures?
Febrile seizures are seizures that occur as result of a high fever. Fever causes a seizure in about 1/35 children, making it the most common cause of seizures in children. Febrile seizures are very scary, especially to the parents of young children. It is believed, however, that these seizures are not harmful. 30-40% of the time a febrile seizure will reoccur.

Who gets febrile seizures?
A fever, if serious, can cause a seizure in individuals of any age. Children between the ages of 3 months and 5 years, however, appear to be the most affected by febrile seizures.

Febrile seizure first aid
The golden rule for all seizures is: if it lasts longer than 5 minutes, go to the hospital. This applies to febrile seizures too.
You may want to try an "antipyretic drug" (ie, a drug that reduces fever), such as acetaminophen (Tylenol®).

What causes febrile seizures?
It isn't fully understood why a fever causes seizure activity. It probably has to do with the complex, developing brain being more susceptible to fever than the more "set" or "developed" adult brain.

Febrile status epilepticus
Febrile status epilepticus occurs when febrile seizures last longer than 5 minutes and do not respond well to treatment. There seizures are thought to be more serious as they may predispose someone to developing epilepsy later in life. An ongoing study in the USA suggests that a small population of individuals that have febrile status epilepticus will go on to develop some brain damage in an area called the hippocampus. These individuals are then likely to develop drug-resistant epilepsy.

More detailed information about febrile seizures can be found here.

Epilepsy and Alternative Medicine

2008-01-15T06:52:00.000-08:00

I have asked several friends/colleagues and mentors to help me with blog content this year. So, we'll be having some "guest posters". Today's guest blogger will provide a naturopathic perspective to the treatment of epilepsy.

Dr.Sara-Jane White is a Graduate of the Canadian College of Naturopathic Medicine. She has also received an Honors English Degree from Brescia College at the University of Western Ontario and she has completed her medical school prerequisites at the University of Toronto.

For more information on the naturopathic treatment of epilepsy, or if you have questions on Rett Syndrome please see Dr.White's webpage: http://www.natdoc.com

Epilepsy and Alternative Medicine

This list is not inclusive but provides information on the more commonly used herbs.

Approximately 2-5% of the population will suffer from epilepsy during their lifetime. As there is more patient awareness of complementary and alternative medicine, patients with epilepsy are increasingly turning to herbs and supplements to avoid the side-effects of anti-epileptic pharmaceuticals.

One can class alternative treatments into four categories: 1. those with excellent efficacy and tolerability i.e. Vitamin B6 used to treat a rare neonatal seizure and some infantile spasms; 2. those with excellent efficacy but poor tolerability i.e. ACTH (adrenocorticotropic hormone) used for infantile spasms and Lennox-Gastaut syndrome; 3. those with promise but without proof of efficacy; 4. those with unproven efficacy but also little evidence of side effects.

At this point in time, however, very little is known about epilepsy and herbal medicine. The most used herbs on the market are typically: ginkgo, St. John’s wort, ginseng, garlic, Echinacea/goldenseal, saw palmettos, kava, pycnogenol/grapeseed, cranberry, valerian root, evening primrose oil, bilberry and milk thistle.

Those herbs primarily considered for a possible treatment of seizures are: American hellebore, betony, blue cohosh, kava, mistletoe, mugwort, pipsissewa and skullcap.

Interactions
Reviews are mixed but ginkgo, evening primrose oil and mistletoe can be considered pro-convulsants in a number of seizure disorders. Anecdotal observations suggest that herbal stimulants containing ephedrine (ephedra or ma huang) and caffeine (cocoa, coffee, tea, mate, guarana, cola or kola) can exacerbate seizures in people with epilepsy especially when taken in combination.

Kava, valerian, chamomile, passionflower may increase the effects of antiepileptic medications by increasing their sedative and cognitive effects.

Theoretical interactions include those herbs that can affect the enzymes within the liver that are responsible for metabolizing seizure medications. Drugs commonly prescribed for the treatment of epilepsy that are metabolized via the cytochrome P450 enzyme system within the liver are: carbamazepine, clonazepam, ethosuximide, felbamate, lamotrigine, oxcarbazepine, phenobarbital, phenytoin, primidone, tiagabine, topiramate, valproic acid and zonisamide (gabapentin and levetiracetam are not).

Anecdotal evidence suggests St. John’s wort, garlic, Echinacea, pyconogenol, milk thistle, mugwort and pipsissewa all inhibit the liver metabolic enzyme system. Actual proof of an interaction is yet to be discovered so at this time the above herbs are not typically seen in herb/drug interaction lists and St. John’s wort is currently considered the most likely to cause a reaction.

Herbs can also affect a ‘pump’ that moves chemicals out of cells. Overrepresentation of a gene (MDR1) responsible for controlling this pump has been seen in tissue samples from patients with intractable epilepsy. Four herbs that potentially affect this pump system are St. John’s wort, garlic, pycnogenol and American hellebore, therefore, they too can be considered a possible interaction.
People with seizures may be advised to avoid ginseng, because the ginsenosides in ginseng may increase the levels of hormones such as ACTH and corticosteroids in the blood, and corticosteroids can raise the likelihood of seizures. As mentioned above, LGS has a low tolerance to ACTH and would want to avoid ginseng and those products containing ginseng, this would include the new Cold FX treatment for cold and flu prevention.

Some essential oils may contain plants containing compounds that increase epilepsy.

References:
http://www.epilepsy.com/epilepsy/alternative_ginseng.html
http://www.neurologyreviews.com/aug02/nr_aug02_epilepsyalt.html

Behavioural Autonomy and Seizures

2008-01-11T03:39:00.000-08:00

What is Autonomy?
Autonomy is one of those words that is hard to put your finger on. It comes from the Greek words "nomos" meaning "law" and "auto" meaning "self". So together they literally mean to "make your own laws". More generally, it is often used to mean "independent" or "self-governed".

Degrees of Autonomy
There are varying degrees of autonomy. On one extreme you have no autonomy. In my point-of-view, complete loss of autonomy equals death. On the other extreme you have absolute autonomy. This is a bit more theoretical and probably isn't possible. There are always mild disruptions of autonomy. This is both necessary and good. Basically, this keeps things from doing whatever they want to do, whenever you want to do it. Mild disruptions in autonomy usually come in the form of "rules" or "laws"- whether they be laws of physics, parental laws, club rules, etc. Of course, some regions/countries/groups have rules and laws that greatly affect one's autonomy, but this is for another post on another blog.

This is, however, a blog on epilepsy. So, I'll focus my discussion on how autonomy is affected by seizures (feel free to argue with me here).

Autonomy and Epilepsy
One of the great difficulties surrounding epilepsy is the effect of seizures on autonomy.

Primary Autonomy
During a seizure, individuals lose their ability to interact with the world around them in a meaningful way*. This is a violation of our most basic sense of autonomy: that we will be able to consciously control our own actions. (*except during a simple partial seizure)

To regain this loss of autonomy, we need better treatments for seizures. The goal that clinicians and researchers are continually striving towards is to achieve seizure freedom in 100% of patients.

Secondary Autonomy
Secondary autonomy is really one's freedom to go out. Individuals with epilepsy tend to go out less. Sometimes this is due to a fear of having a seizure in public. Often it is due to social stigmas against epilepsy which can make individuals with epilepsy feel very uncomfortable in certain situations. People tend to be afraid of epilepsy and this is mostly due to lack of understanding. There should be no more stigma attached to epilepsy than there is to a disorder like asthma.

To a large extent, I think that improving public education and awareness of epilepsy will significantly improve the secondary autonomy of those living with epilepsy. This is changing (slowly but surely) for the better.

Tertiary Autonomy
Tertiary autonomy is the autonomy of the family. Families living with epilepsy tend to spend most of their time/energy concerned with seizures and this really impacts how often they go out and do the things they would otherwise do. When they do go out, it tends to be related to epilepsy (medical appointments, etc.).

Once again, we need better treatment for seizures. As long as people are having seizures, their families will be concerned and the family dynamic will be changed.

The Conference
I am a member of the Society for Autonomous Neurodynamics which holds an annual meeting called "Principles of Autonomous Neurodynamics". The name can be a bit intimidating, but the conference is the exact opposite- it's a great group of biologists, physicists, computer programmers, individuals living with epilepsy, clinicians, etc. from around the world getting together to discuss the brain and "autonomy" at every level imaginable. Check out the link above if you are interested.

Have an autonomous day!

Kirk.

SUDEP

2008-01-06T11:14:00.000-08:00

What is SUDEP?
SUDEP, or Sudden, Unexplained Death in EPilepsy, occurs when a patient with epilepsy dies suddenly and with no apparent cause. SUDEP occurs in approximately 1/1000 patients with drug-resistant epilepsy.

General Risk Factors
- Severity of seizures
- Skipping drug doses (poor compliance)*
- Taking multiple anticonvulsant drugs*
- Breathing complications (eg, apnea)
- Having a structural brain lesion
- Cardiac abnormalities (eg, irregular heart beat)
- Being male (males are affected by SUDEP more commonly than females)

*These do not appear to be significant risk factors for SUDEP in children.

SUDEP Prevention
Aggressively Pursue Seizure Control
This may sound like one of those "duhhhh of course" statements, but many people stop short of exhausting their treatment options.
First and foremost, take your anticonvulsant medications as prescribed. If you are unclear about how you should be taking your medications then please talk to your pharmacist.
If you have uncontrolled seizures, make sure you see an epileptologist. Also, don’t be afraid to get a second opinion or a referral to a well established epilepsy treatment center-- it's your right. Read the "see an epileptologist" post below to find out where your nearest epilepsy treatment centre is.
Don’t be afraid to consult all forms of health care specialists (eg, naturopathic doctors).

**Make sure you consult your pharmacist before taking any other drugs and/or herbs. Some drugs and herbs can significantly impact how your body metabolizes/eliminates the drugs you are currently taking.

Sleep on Your Back
Breathing complications, especially during sleep, are thought to be a contributor to both SIDS (Sudden Infant Death Syndrome) and SUDEP. Studies have shown that SUDEP is significantly less common in individuals who sleep on their backs (ie, face up) than those who sleep on their stomach (ie, face down).

Check Your Heart
Abnormalities in heart function have been correlated with a higher risk of SUDEP. "Prolonged QT interval" (this basically means your heart beat is a bit abnormal) is a risk factor in SUDEP. Another cardiac phenomenon that is linked to SUDEP is "syncope", which is when one feints due to a lack of blood to the brain. It is well worth having your heart checked (quick and easy), especially if an individual has several of the general risk factors outlined above.

Check Your Stress
This "S-word" seems to be implicated in several disorders; epilepsy and SUDEP are no exception. Stress and anxiety can contribute to elevated adrenaline (also called: epinephrine) levels in the body. Adrenaline makes the heart pump faster, which can exacerbate any pre-existing heart abnormalities and contribute to increased risk of SUDEP. As a general health tip, try to avoid significant sources of stress in your life. When unavoidable, try to find ways to minimize the impact of these stressors. Soothing music, relaxed and deep breathing, massage, yoga, diverting your mind with fun (play games, sports) are different things one can to do to minimize stress.

Conclusions
Not all of the causes of SUDEP are understood but certain risk factors have been identified. We may not eliminate SUDEP, but we can take relatively small actions to minimize their risk of SUDEP.

References:
Donner EJ et al., 2001. Neurology. 57:430-434.
Nashef L et al., 2007. Epilepsia. 48: 859–871.
Lathers et al., 2008. Epilepsy and Behavior. 12: 3-24.

New Drugs

2008-01-02T06:53:00.001-08:00

Happy 2008. Let's start off the New Year on a hopeful note. I recently read an article on some new, emerging drugs being developed for the treatment of drug-resistant epilepsy.

Approximately 30% of individuals with epilepsy do not achieve adequate seizure control on the existing anticonvulsant drugs. These seizures are said to be "drug-resistant" (note: some might use the cumbersome terms "intractable" or "medically refractory"--but these all mean something similar, that the individual's seizures are not being significantly reduced by the medications currently available).

Therefore, there is a real need for new drugs that work in a new way (ie, drugs that have a novel mechanism of anticonvulsant action). The goal of developing such drugs is to one day have 0% drug resistant seizures.

A recent review published in European Journal of Neurology reviews drugs currently being tested for the treatment of drug-resistant seizures. Here is a list of some of these potentially exciting new compounds:

Brivaracetam
- Novel mechanism (binds vesicular proteins)
- Potential side effect of pain.

BIA2–93
- Similar mechanism to phenytoin, carbamazepine, felbamate, lamotrigine, oxcarbazepine, topiramate and zonisamide.
- Potentially more potent

DP16 (SPD 421)
- Similar actions as valproate
- Site-specific delivery with fewer side effects than valproate

Fluorofelbamate
- Works via several mechanisms
- Less GABA-mediated response than felbamate
- Fewer side effects than felbamate

Ganaxolone
- Novel mechanism (works on the neurosteroid system)
- Side effects of headache, nausea, malaise, gastrointestinal disturbances
- Works longer and has fewer drug interactions

Lacosamide
- Novel mechanism (works on glycine system)
- Side effects of ataxia, headache, dizziness

Retigabine
- Novel mechanism (works on potassium channels)
- Side effects of dizziness, tremor, somnolence

Rufinamide
- Several mechanisms
- Side effects of tremor, fatigue, dizziness
- May be useful in Lennox-Gastaut syndrome

Talampanel
- Novel mechanism (works on glutamate system)
- Side effects of ataxia, dizziness

These drugs are still in early stages of development and may not be available for a few years. However, it is hopeful to see that new drugs are being tested for the treatment of drug resistant seizures. Wouldn't it be great if all people with epilepsy could be guaranteed a significant decrease in their seizures?

Reference:
Stefan H, Steinhoff BJ. 2007. Emerging drugs for epilepsy and other treatment options. Eur J Neurol. 14, 1154-1161.

Merry Christmas and Happy 2008

2007-12-28T08:40:00.001-08:00

I'm away visiting
with family and friends
I'll post some more
when my holiday ends.

Until then
Happy New Year and
here's to a great
2008.

OK, so the rhyming scheme isn't consistent. In my defense, all my blood is being diverted away from my brain and towards my stomach.

I have some exciting posts planned for the New Year, so please stay tuned. And, as always, feel free to post your questions/comments below.

All the best,

Kirk.

See An Epileptologist

2007-12-21T07:34:00.000-08:00

I have heard this story too many times: someone has seizures- they go to a family physician- they are misdiagnosed or placed on the wrong drug- they have uncontrolled seizures for years- they don't realize they might be able to optimize their diagnosis and treatment.

The Mechanic Allegory
You get in your car one day to head to work. Upon shifting into reverse you hear a horrific *CLANK*. Being the clever person you are, you have figured out that your car's transmission has just died. So, you need to get your car fixed. You have 3 options: 1) Take your car to the general mechanic around the corner. He doesn't know much about transmissions, but he might get it fixed without too much trouble. 2) Take your car to the "drive-train" specialists down the street. She is a step-up from the general mechanic in terms of expertise, but the drive-train involves many different pieces and you're not sure how much she knows about the transmission itself. 3) Take your car to the transmission specialist across town. They know the most about transmissions and are likely to do the best job.

All other things being equal, who do you go see?

Correct- you go see an epileptologist! (my attempt at a joke)

What is an Epileptologist?
Generally speaking, an epileptologist is someone who specializes in the study of epilepsy. For the purposes of this post, we'll say that it's a neurologist that specializes in epilepsy diagnosis and treatment.

Where are all the Epileptologists?
Unfortunately, my knowledge is fairly limited to the US and Canada. If anyone has links to a list of epileptologists/epilepsy clinics in other countries, please post them below. Here are a few links to places you can find epileptologists.

Canada

United Kingdom

United States*

*The U.S.A. has comprehensive epilepsy care clinics. These are "1-stop" centers that have their own epileptologists, neurosurgeons, nurses, EEG technicians, brain imaging technicians, neuropsychologists/ psychiatrists, dietitians with all their corresponding equipment. Canada is currently exploring the idea of developing epilepsy centres. The closest thing Canada currently has to comprehensive epilepsy centres are The Hospital for Sick Children (Toronto, ON), Toronto Western Hospital (Toronto, ON) and London Health Sciences Centre (London, ON).

Take Home Message
If you, or someone you know, has uncontrolled epilepsy and have not seen an epileptologist- then try to see one.

Merry Christmas everyone!
Please feel free to comment, post questions or leave me some ideas for future posts.
Kirk.

National Walk for Epilepsy

2007-12-18T14:18:00.000-08:00

The 2008 National Walk for Epilepsy
Mark your calendars- on March 29th, 2008 the Epilepsy Foundation is hosting its 2nd Annual National Walk for Epilepsy. The Walk takes place in Washington, D.C. during a very beautiful time of year, cherry blossom season. Now is a great time to sign up and start raising funds, both to get there yourself and/or to raise money for the Foundation. This is the American Walk for Epilepsy -- I'll discuss below plans for Canada's First National Walk for Epilepsy.

Long Overdue- But Better Late Than Never
Finally, a National event to raise awareness and money for epilepsy. Epilepsy is probably one of the oldest known disorders. Pythagoras and Socrates were said to have suffered from seizures. Why is it that only now (2500 years later) we are seeing National Walks and other great fund-raising initiatives for epilepsy? Better late than never though, right? Right.

Speaking of "Better Late Than Never"
My wife and I attended the 1st Annual National Walk for Epilepsy last year and it was wonderful. This might be old news to some, but I thought I'd post on it for those of you who don't know about the Walk or are interested in some details. It took place on the National Mall, Washington D.C. on March 31, 2007. It consisted of walking 5kms (why would an American foundation advertise a 5 kilometer walk? I guess a "3.10685 mile Walk" doesn't roll of the tongue very well) down the National Mall and by all of the great museums and heritage buildings.

Before-hand, I presented my research at the National Institutes of Health's "Curing Epilepsy 2007" conference in Bethesda, Maryland. This conference consisted of talks by some of the world's most eminent epilepsy researchers. Naturally, the conference promoted the Walk and many of the conference attendees stuck around for an extra day to take part in the Walk.

I was excited about the Walk. My nephew had been recently diagnosed with epilepsy and my wife and I saw this as a great chance to support him. The Walk began Saturday morning, bright and early. It was a gorgeous Spring day. My wife and I did a few cartwheels outside the Canadian Embassy on our way to the National Mall. The energy was a mixture of sadness and hope. Many people had team shirts made up for the Walk. Some shirts told of how a loved one died of SUDEP (Sudden, Unexplained Death in Epilepsy). Others had shirts telling everyone what State they were representing.

Some people did the 5km Walk in a wheel chair. Some ran the 5km. Most simply walked the Walk (pardon the pun). It was very exciting being surrounded by 3000 other people with a common goal/desire: to raise money and awareness for epilepsy. In the end, the Walk was a success. There were representatives from every State (I suspect that we were the only "Canucks" present) and they raised a little over $1,000,000 for the Epilepsy Foundation. That money will go towards supporting those with epilepsy, promoting epilepsy awareness and funding some epilepsy research.

Why a Walk?
A National Walk is a great way to raise both money and awareness for an issue. Most of the 3000 walkers solicited support from several friends and family members. The word really gets out there, causing a ripple effect that brings the topic of epilepsy into the collective conscious of a Nation.

A Canadian Walk for Epilepsy
Canada is currently in the early stages of organizing a National Walk for Epilepsy. The goal is have the Walk in mid- to late-2008. I'll definitely keep everyone updated as the plans progress.

Onward and upward!

Kirk.

The Ketogenic Diet and Friends

2007-12-14T05:53:00.000-08:00

It's Friday and I want to have some fun- so I'm going to post about the ketogenic diet. I'll introduce the concept of dietary treatment of epilepsy now. I'll discuss how these diets might be working in a later post.

What is the Ketogenic Diet?
The ketogenic diet is a high fat, low carbohydrate and adequate-protein diet used to treat drug-resistant seizures. The most commonly used "classic" ketogenic diet has a 4:1 ratio. This means that there are 4 parts of fat to every 1 part of combined carbohydrate and protein (by weight). Translation: about 90% of your caloric intake is in the form of fat. Normally our body uses carbohydrate (sugars) as the main energy source. When dietary carbohydrates are severely limited (ie, almost no potatoes, rice, noodles, fruit, or candy) the body goes looking elsewhere for energy. Our bodies have a "backup system" that uses fat for energy. The KD provides a lot of fat for this back-up system to use.

Who Goes on the Ketogenic Diet?
Approximately 20-30% of people with epilepsy will not see a significant seizure reduction with the anticonvulsant drugs. These people are said to have "drug resistant", "medically refractory" or "intractable" seizures. One of the alternative treatment options for these individuals is the ketogenic diet. Aside from neurosurgery, the KD is one of the only alternative treatments that could "cure" epilepsy. I use quotes to qualify the word "cure". There's a small percentage of patients that will achieve seizure freedom on the KD and when taken off the diet (after a few years), their seizures never come back. It's hard to say whether the diet has cured their epilepsy or whether they simply out-grew their epilepsy while on the diet.

Is the Ketogenic Diet "Natural"?
The short answer is a definite, resounding NO! There is nothing natural about having fat represent 90% of your daily caloric intake. That said, there is nothing natural about the drugs either. My opinion is to eliminate "naturalness" as a factor when making a therapeutic decision for epilepsy treatment. Rather, weigh the pros-and-cons of "severity of treatment" and "severity of seizures" with the "possible benefit of the treatment".

Strengths of the Ketogenic Diet
---Anticonvulsant Effect---
The main strength of the ketogenic diet is that it is very good at suppressing seizures. Clinical data suggest that about 60% of patients will see a >50% reduction in seizures with 10-15% of this group seeing a >90% reduction in their seizures. About 40% will see a less than 50% reduction in their seizures. This is remarkable given that these are individuals that have already failed to see a significant improvement on two or more anticonvulsant drugs.

---Cognitive and Behavioral Effect---
There is a growing body of evidence (although most of it remains anecdotal) that the KD is associated with beneficial cognitive and behavioral effects. There are anecdotes of parents putting their kids on the KD and seeing no change in seizure frequency. However, they saw such good changes in mood and cognition that they kept their child on the diet anyway.

Problems of the Ketogenic Diet
The KD is not without problems. Below are some of the most common issues/questions regarding the diet.

---Will I Gain Weight on the Ketogenic Diet?---
Many people think you'll get fat on this diet, but the opposite is true- you'll actually lose some weight as the diet turbo-charges the fat burning machinery of the body. Carbohydrates and protein, nutrients limited by the KD, are both important in growth and maturation.

---Side Effects of the Ketogenic Diet---
Decreased bone density, stunted growth, vitamin and mineral deficiencies (most KD programs will require individuals to take vitamin and mineral supplements), cardio-vascular disease with prolonged use, kidney stones (1-2% risk).

Risk of these "adverse events" need to be weighed with the severity and the degree of drug-resistance of the seizures.

Adherence
Perhaps the largest issue facing the use of the KD is adherence. A large proportion of those that start the diet tend to quit due to the fact that it's too restrictive and rigorous. For example, you need to weigh all of your food to the 100th of a gram and know all of the food's nutritional content. The diet works in both kids and adults. Many neurologists say the diet works less well in adults, but this is simply because adults are more likely to say "forget this nonsense, I'm going to enjoy a chocolate bar" whereas children can have their diets imposed on them by their parents (it's an autonomy issue, really).

Autonomy on the Ketogenic Diet
The autonomy (or freedom) of an individual on the KD is significantly affected by the dietary limits imposed by the KD. Kids can't trade lunches or enjoy a fresh-baked chocolate chip cookie. This really cramps the style of a grade-schooler. Sometimes locks need to be put on the fridge/cupboards to prevent the sneaking of a sugary snack. This is a significant factor to consider when deciding whether or not to try the ketogenic diet.

Other Diet Options
The new, exciting news is that the Atkins diet (www.atkinsforseizures.com) and the low-glycemic index diet (LGID for short) also appear to work like the ketogenic diet. They are also much less restrictive in terms of what you can/cannot eat. The tough part is finding a hospital with a neurologist/dietician that work with these diets for the treatment of drug-resistant epilepsy. Certainly, these diets may be much better tolerated by adults as they require less "cramping" of your culinary lifestyle. They also appear to be associated with fewer side-effects- although more research is needed before these diets become as common-place as the KD.

So there's a brief introduction to the ketogenic diet and its friends.

As always, Please feel free to post any comments/questions you may have.

Kirk.

The Drugs: Wherefore and Whence?

2007-12-12T05:55:00.000-08:00

Anticonvulsant Drugs, Antiseizure Drugs or Antiepileptic Drugs?
I am seldom picky over words, but I really dislike the term "antiepileptic drug". It sounds like a pill you take if you don't like people with epilepsy. Some rogue, pill-popping gang wandering the streets with a score to settle against those who have epilepsy. Whoever coined this term obviously didn't eat their Wheaties.

Two more acceptable terms are "antiseizure drugs" and "anticonvulsant drugs". Strictly speaking, a seizure is an electrographic event. It is the disruption of brain activity that we can measure using an EEG (see "What is a Seizure" below). A seizure may or may not be associated with a convulsion. A convulsion is the movement/behavior caused by a seizure. For example, tonic-clonic* (formerly called grand mal) seizures cause tonic-clonic movements therefore it is a convulsive seizure. Other seizures, however, do not cause convulsions. For example, simple partial seizures that do not affect motor areas of the brain will not cause any movement- therefore they are non-convulsive seizures. I tend to use the terms "anticonvulsant drugs" and "antiseizure drugs" interchangeably.

*Tonus is continuous contraction of the muscles, causing the limbs to straighten and become stiff. Clonus is the repeated contraction and relaxation of the muscles which results in a jerking movement.

The Drugs.
Upon being diagnosed with epilepsy, the first course of treatment is generally the drugs.

Until the mid 1990s, the "traditional" anticonvulsants were the most commonly prescribed (drugs listed by generic name with trade name in parentheses). These include phenobarbital (Luminal®), primidone (Mysoline®), phenytoin (Dilantin®), carbamazepine (Tegretol®), ethosuximide (Zarontin®), clonazepam (Rivotril®) and valproate (Depakene®). These "first-line" anticonvulsant drugs are only effective in 60-70% of patients. They may also be associated with severe side effects.

In the past decade, a number of new drugs have been introduced to the market. These include felbamate (Felbatol®), fosphenytoin sodium (Cerebyx®), oxcarbazepine (Trileptal®), gabapentin (Neurontin®), lamotrigine (Lamictal®), zonisamide (Zonegran®), levetiracetam (Keppra®), tiagabine (Gabitril®), pregabalin (Lyrica®) and topiramate (Topamax®). Although these newer drugs have fewer side effects, they do not appear to be more effective at stopping seizures than the traditional drugs- meaning 20-30% of patients will not gain adequate seizure control on these meds.

How the Drugs Work.
The new anticonvulsant drugs may not be more effective than the old anticonvulsant drugs because they tend to work in very similar ways. Anticonvulsant drugs generally work to decrease excitation or increase inhibition in the brain. This is usually accomplished by one of three mechanisms: enhancing GABA activity, decreasing sodium channel activity, or decreasing T-type calcium channel activity.

GABA Drugs.
GABA (also know by the less cuddly name: gamma-aminobutyric acid) is the major inhibitory chemical in the brain. It works by slamming on the proverbial brakes (see car analogy under "What is a Seizure" below). The GABA drugs elevate levels of GABA in the brain. Slamming on the brakes will make the brain less excitable and less prone to seizures. It will also make it harder to remember things and stay alert/energetic. This is because these drugs raise GABA levels all over the brain, and not just in the area(s) that cause the seizure.

A number of the anticonvulsants enhance the activity of GABA, often indirectly. Examples of such drugs are: phenobarbital (Luminal®), primidone (Mysoline®), topiramate (Topamax®), diazepam (Valium®) and tiagabine (Gabitril®).

Sodium Channel Blockers.
Sodium channels (specifically, voltage-gated sodium channels) are responsible for the firing of neurons in the brain. Think of a neuron as a water hose. The hose is full of little gates, however, that prevent the water from flowing through it. When the gates "sense" that water is coming, they open and allow the water to flow through. This is a rough analogy of how the voltage gated sodium channels work- only instead of water they allow the passage of positively charged ions (like sodium) into the cell which allows the signal to carry on.

Drugs that work on sodium channels in the brain tend to delay these channels, causing neurons to fire a tiny bit slower than normal. Examples of voltage-gated sodium channel drugs are phenytoin (Dilantin®), carbamazepine (Tegretol®), felbamate (Felbatol®), lamotrigine (Lamictal®), oxcarbazepine (Trileptal®), pregabalin (Lyrica®), topiramate (Topamax®) and zonisamide (Zonegran®).

Calcium Channel Blockers.
T-type calcium channels are thought to cause rhythmic neuronal firing associated with absence seizures. Similar to sodium channels, calcium channels open and allow positively charged ions to enter the cell -- only this time it's calcium and not sodium. Calcium channel blockers tend to be most effective in treating absence seizures. Examples of drugs acting on calcium channels are ethosuximide (Zarontin®), felbamate (Felbatol®), lamotrigine (Lamictal®), topiramate (Topamax®) and zonisamide (Zonegran®).

Drugs for the Treatment of Status Epilepticus.
Status epilepticus is a seizure that does not end on its own. Generally, someone is said to be in status if their seizure lasts longer than 5 minutes. This is when it's important to get to a hospital/call 911 as special drugs will be required to stop these seizures (see "Seizure First Aid" below). These include diazepam (Valium®), lorazepam (Ativan®) and sometimes general anesthetics such as propofol (Diprivan®).

Other Treatments for Epilepsy
This post is long enough. Later, I will cover non-drug treatments such as the ketogenic diet, vagal nerve stimulator and neurosurgery.

Onwards and upwards!
Kirk.

References:
Browne TR & Holmes GL. 2001. Epilepsy – Primary Care. New England Journal of Medicine. 344, 1145-1151.
Burnham WM. 1998. Antiseizure drugs. In: Principles of Medical Pharmacology. New York: 250-277.
Catterall WA. 1987. Common modes of drug action on Na+ channels: local anesthetics, antiarrhythmics and anticonvulsants. Trends in Pharmacological Science. 8, 57-65.
LaRoche SM & Helmers SL. 2004. The new antiepileptic drugs. Journal of the American Medical Association. 291, 605-614.

Seizure First Aid

2007-12-09T17:55:00.000-08:00

Don't We Already Know What To Do?
There is probably very little point in even writing this- cause we all know that when you witness a seizure, you try and open the person's mouth so that they don't swallow their tongue. Then you call them an ambulance. Right?

WRONG!

If you were reading the above paragraph to yourself thinking "yup, yup, right, exactly!" ... then please read below in great detail. Then re-read it.

Witnessing a Seizure.
Witnessing a seizure for the first time is difficult. It is important to know that the person having a generalized seizure is not in pain and is not conscious. Many people feel scared when they witness a seizure. This is OK. Take a deep breath and know that you can be a significant help to the person having the seizure by following a few simple steps.

What To Do.
- Stay calm.
- Ensure your own safety. If you can't safely approach the individual, then simply stand back.
- If possible, make sure the individual having the seizure is not in harm's way (eg, street, subway, etc.).
- Place something soft under their head so they don’t hit it.
- Pay attention to the length of the seizure (only call an ambulance if the seizure lasts more than 5 minutes).
- Maintain a free space around the individual, don’t allow crowding.
- Once the individual stops moving, try and place them on their side. There is a chance they could vomit. Being on their side ensures their safety from choking.
- The individual may be disoriented after a seizure so be careful not to frighten them. They could react violently if you try to grab them (imagine what you'd do if you woke up disoriented to a stranger grabbing you).
- Try and stay (or find someone to stay) with the individual until they recover fully (5 to 20 minutes). Sadly, there have been reports of people being robbed during a seizure. Even if you can't do any of the above, try to stick around and watch over the person. When they regain consciousness, gently let them know that they have had a seizure and that everything is OK.

What To Avoid Doing.
- Do not try and open the individual’s mouth or place anything in their mouth. Their jaw is locked shut during a tonic-clonic seizure and trying to open their mouth could damage their jaw. There is no risk of them swallowing their tongue.
- Do not try and pin the individual down.
- Do not call an ambulance/911 unless the seizure lasts longer than 5 minutes. Although scary, a seizure is not a medical emergency. The individual who had the seizure is the one who ends up having to pay for the ambulance ride.

What is Epilepsy? What is a Seizure?

2007-12-09T09:14:00.000-08:00

Some simplified terms.

Neuron: Also called brain cells. These are the basic building blocks of our brain. They signal (both chemically and electrically) to one another, resulting in our behaviors.

Behavior: What we do.

What is epilepsy?
Epilepsy is a disorder characterized by a wide spectrum of seizures. I will describe the seizure types later, but they range from very brief staring spells to the much stereotyped jerking and flexing of the arms and legs. A diagnosis of epilepsy is made after more than one unprovoked seizure. About 1% of the population has epilepsy.

What is a seizure?
The definition of "seizure" is not completely agreed upon. What we do know is that a seizure consists of a change in brain activity that results in a disruption of our normal behavior. If you give any more detail than that, then people start to argue. Generally speaking, however, people agree that a seizure has elements of "synchrony" and "hyper-excitation".

Normally, brain activity is "chaotic". When you hook someone up to an electroencephalogram (EEG, a machine that measures brain waves) you see very random looking, unpredictable activity (does anyone else find it ironic that chaotic activity is required to generate "normal" behavior**). Synchrony occurs when groups of neurons (called "networks") begin to fire together. "Why" and "how" our neurons become synchronous is not known. It is one of the many mysteries of a very complex system that is being studied by epilepsy researchers.

Seizures are also said to involve hyper-excitation. Brain activity consists of excitatory and inhibitory signals. The analogy often used is that of a car. A car has both an accelerator (excitatory) and brakes (inhibitory). For normal driving, a combination of accelerating and braking is necessary. During a seizure, however, this balance is lost and the brain becomes hyper-excitable. This is where the analogy falls apart because someone having a seizure isn't the same as someone driving off the road and crashing. Rather, they show the behavior of whatever brain region is over-excitable. If the seizure is in a motor area of the brain, then they have a seizure involving motor actions- such as arm and leg movements. If the seizure is in the visual area of the brain, then they may see flashing lights or odd visual patterns.

Types of Seizures.
Seizures types are divided into one of two categories: "generalized seizures" or "partial seizures". A generalized seizure is thought to involve all brain regions at once. One example of a generalized seizure is a "tonic-clonic" seizure (formerly called grand mal seizures). Tonic-clonic seizures are what many people imagine when they hear the word "epilepsy". They involve falling to the ground and shaking of the arms and legs. This movement is the result of the contraction and relaxation of several muscle groups. I know I said that seizures occur in the brain, but these brain cells activate nerve cells in our spinal cord that cause our muscles to contract or relax. Another type of generalized seizure is an absence seizure (formerly called petit mal seizures). Absence seizures involve staring spells, and sometimes rapid blinking of the eyes. Children with absence seizures are often accused of being inattentive or day-dreamers before they are diagnosed with this type of seizure. People are unconscious during all generalized seizures.

A partial seizure, on the other hand, is confined to a specific brain region and is often described as being "focal". An example of a partial seizure is a "simple partial" seizure. Individuals are conscious during simple partial seizures. They may sense flashing lights, feelings of anxiety, hear strange noises or smell a bad smell - depending on the area of the brain involved in the seizure. A partial seizure, however, may spread to other regions of the brain and become generalized. An example of this type of seizure is a "complex partial" seizure. If the simple partial seizure causes a sensation before the seizure generalizes, that individual is said to have an "aura". Auras can be helpful in alerting the individual that they are about to have a generalized seizure. During a complex partial seizure the individual is said to be in an altered state of consciousness. They may appear conscious and responsive, but they will have no recollection of seizure or the events that occurred during the seizure. There are several reports of people doing elaborate activities during a complex partial seizure. One of my favorite stories is of a woman who, during a complex partial seizure, prepared place-settings with her china and cutlery -- on the kitchen floor.

What Causes a Seizure?
Seizures are classified either as "cryptogenic" or "symptomatic". About 60-70% of seizures are cryptogenic- meaning they have no apparent cause. In reality, this means that we don't have the imaging technology to see where the problem is yet. Some of the cryptogenic seizures are genetic, meaning a genetic abnormality changes the way the brain works, making it more susceptible to seizures. This would not show up on an imaging test - and we need to develop better functional tests to screen for these seizure types.

About 30-40% of seizures are symptomatic. This means they have a known underlying problem (eg, brain injury, tumor, known chemical imbalance, etc.). These problems are thought to lower the "seizure threshold" in the brain. The seizure threshold can be defined as the minimal stimulus required to elicit a seizure. Don’t think of "stimulus" in the sense of an electrical shock. Rather, think of it in the sense of whether a cup of coffee, a stressful drive, or poor night's sleep will cause you to have a seizure. People with epilepsy are thought to have a chronically low seizure threshold. This is to say, there is something about the wiring or chemical milieu of their brains that predisposes them to seizure activity.

OK, that's a head-full for now. More to come ...

Kirk.

**I say "normal" behavior because my wise Mother always reminds me that "normal" is just a cycle on your washing machine.

Reference:
Much of the above information was distilled from Dr.W.M.Burnham's excellent article entitled "Epilepsy" from the Encyclopedia of Cognitive Science. (2006) John Wiley & Sons, Ltd.

Why Start a Blog on Epilepsy?

2007-12-09T07:35:00.000-08:00

Welcome to the "Epilepsy in a Nutshell" blog!

Why start a blog on Epilepsy? The answer is fairly simple. We are entering a new age in health care where patients (and family/friends of patients) want to empower themselves with information. The flow of knowledge from clinical and basic science realms- especially as it pertains to epilepsy- is not readily accessible. Therefore, the purpose of this blog is to distill and relay important information to those of you living with epilepsy.

The title "Epilepsy in a Nutshell" harkens back to my grade 9 science class where my teacher used to tell us "it's all up there in a nutshell grade 9". This was his way of empowering us to use our brains and sort through the problems. The title isn't meant to suggest that epilepsy is a simple subject. On the contrary- there is nothing more challenging than trying to understand how the brain works, or why it isn't working the way we want it to. As you probably already know, there are no easy answers in this field. Fundamental questions like "what is a seizure", "who gets epilepsy" and "what is the best treatment for my seizures" are still being debated. Regardless, I will address all of these questions here and together we can try and make sense of it all.

I will make a few blog posts today, just to populate the blog. My goal is to make one or two posts each week. Inevitably, I will post information on "what is epilepsy", etc. But, there are many sites out there already dealing with that (see links). My vision for this site is to address issues facing those living with epilepsy.

Well, I hope you find the information posted here useful. Please feel free to comment below or email me if you want me to review a specific topic. I will do my best to cover many of the relevant topics facing those living with epilepsy. To keep things exciting, I will also call on colleagues and mentors from time-to-time to post the "latest and greatest" in their subfield of epilepsy research.

So here we go ...