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.
Thursday, January 31, 2008
Friday, January 25, 2008
Take Your Omega-3 PUFAs
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)
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)
Monday, January 21, 2008
Febrile Seizures
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.
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.
Tuesday, January 15, 2008
Epilepsy and Alternative Medicine
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
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
Friday, January 11, 2008
Behavioural Autonomy and Seizures
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.
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.
Sunday, January 6, 2008
SUDEP
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.
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.
Wednesday, January 2, 2008
New Drugs
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.
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.
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