Ok...I've got a bone to pick about this topic. Most epilepsy web sites report that sleep deprivation can cause seizures, and hence, it is important to track in your seizure diary. But that's not always the case. For example, sleep deprivation never causes my seizures. Too much sleep, or waking up, and then falling asleep again, seems to have a greater effect on my seizure activity.
I'm not saying that sleep deprivation doesn't cause seizures. All I'm saying is that sleep, in all of its forms, is something to track in your seizure diary.
So why is sleep a problem? It seems the experts don't know for sure. But what they do know is that the sleep-wake cycle affects brain activity. Epilepsy.com has an interesting article on this very topic, although they (in my humble opinion) improperly entitle it "Sleep Deprivation".
Tracking sleep in a seizure diary is not that difficult. I track when I go to bed, when I wake up, how well I slept (if I can remember), and whether anything affected my sleep (such as jet lag or cold medicine). By doing this, I can look for the sleep patterns that seem to work (e.g. sleeping 7 good hours works, anything beyond seems to cause problems).
Which brings up another point: don't just consider too much sleep or too little sleep. Look for the combinations that affect sleep patterns. In my case, I track exercise and sleep, alcohol and sleep, and medicines (such as cold medicine or sleeping pills) and sleep. All of these affect how well I sleep.
Good luck and happy tracking.
Thursday, December 13, 2007
Friday, December 7, 2007
What to track: caffeine
Coffee. As a caffeine addict from a very early age, I can tell you how much I love it. As someone with epilepsy who takes 1800 mgs. of Tegretol XR a day, I can tell you how much I need it.
The problem is, caffeine can be detrimental to some individuals with epilepsy. According to Stephen Cherniske in his book, Caffeine Blues, "when you consume caffeine, the drug begins its effects by initiating uncontrolled neuron firing in your brain. This excess neuron activity triggers your pituitary gland to secrete a hormone that tells your adrenal glands to produce adrenalin." The adrenalin picks you up for a while, but also leaves you tired when it wears off.
According to epilepsy.com, "it does act as a stimulant and a few people report having seizures after they consume it." I fall into that category. But not everyone does. For that reason, it is important to track. If you can rule it out as a seizure trigger, then you can enjoy it without fear.
In my case, when I realized it was a trigger, I started to cut back, drinking less of it and drinking half-decaf. I tracked this new combination for awhile, and this seems to have done the trick. However, I also know that my body has become more sensitive over time. So, I continue to track my intake in case the less potent coffee starts to become a problem.
How do I track it? I use EpiTrax to record the approximate time I drink it, and then record what I drink, e.g. "large 1/2 decaf latte" or "small 1/2 decaf coffee". Over time, I can see the trend of my caffeine intake or look for trends between seizures and coffee.
For more information on coffee and seizures, check out this search on google.
The problem is, caffeine can be detrimental to some individuals with epilepsy. According to Stephen Cherniske in his book, Caffeine Blues, "when you consume caffeine, the drug begins its effects by initiating uncontrolled neuron firing in your brain. This excess neuron activity triggers your pituitary gland to secrete a hormone that tells your adrenal glands to produce adrenalin." The adrenalin picks you up for a while, but also leaves you tired when it wears off.
According to epilepsy.com, "it does act as a stimulant and a few people report having seizures after they consume it." I fall into that category. But not everyone does. For that reason, it is important to track. If you can rule it out as a seizure trigger, then you can enjoy it without fear.
In my case, when I realized it was a trigger, I started to cut back, drinking less of it and drinking half-decaf. I tracked this new combination for awhile, and this seems to have done the trick. However, I also know that my body has become more sensitive over time. So, I continue to track my intake in case the less potent coffee starts to become a problem.
How do I track it? I use EpiTrax to record the approximate time I drink it, and then record what I drink, e.g. "large 1/2 decaf latte" or "small 1/2 decaf coffee". Over time, I can see the trend of my caffeine intake or look for trends between seizures and coffee.
For more information on coffee and seizures, check out this search on google.
Monday, December 3, 2007
NeoMed Goes to Phili
Hey all:
Just got back from the AES (American Epilepsy Society) Show in Philadelphia. I have to say, I was debating whether or not to go. But now that I'm back, I'm glad I went.
The show floor was full of interesting companies, from epilepsy programs and clinics, to all the big pharma companies, to software companies and book publishers. Most of the software focused on EEG reading software that physicians could use. There were also hundreds of research projects on display that were there for the browsing. Not being a doctor or researcher, I didn't understand half of them! Still, it was nice to see all of the action and research surrounding epilepsy. Personally, looking from the outside in, I've had a tendency to be jaded, thinking that very little was being done for those with epilepsy. But I'm here to tell you that lots of people are working on our behalf. AES definitely proved that.
My seizure diary software, EpiTrax, was well-received by doctors, epilepsy foundation affiliates and researchers alike. All understood the importance of seizure diaries and everyone seemed impressed that we had taken our diary as far as we had. If anything, I came away with a sense that we're headed down the right path.
Philadelphia also turned out to be a great surprise. The downtown was clean and impressive, with lots of historic buildings, restaurants, bar, shops and more. I could easily have spent more time there. My only complaint was the cold. 30-40 degrees. For a California boy, that is cold. Brrrr.
Here are some pics I took with the not-so-fancy camera in my phone:
The show filled up a quarter of the Phili Convention Center.
Beautiful town hall was a block away from my hotel. And yes, I visited the Liberty Bell too.
If any of you live in Seattle, or close, you should try to attend the AES Shownext year. I know it's not a consumer show, but it may give you some insight into what's happening in the world of epilepsy.
Until next time...
-Eric
Just got back from the AES (American Epilepsy Society) Show in Philadelphia. I have to say, I was debating whether or not to go. But now that I'm back, I'm glad I went.
The show floor was full of interesting companies, from epilepsy programs and clinics, to all the big pharma companies, to software companies and book publishers. Most of the software focused on EEG reading software that physicians could use. There were also hundreds of research projects on display that were there for the browsing. Not being a doctor or researcher, I didn't understand half of them! Still, it was nice to see all of the action and research surrounding epilepsy. Personally, looking from the outside in, I've had a tendency to be jaded, thinking that very little was being done for those with epilepsy. But I'm here to tell you that lots of people are working on our behalf. AES definitely proved that.
My seizure diary software, EpiTrax, was well-received by doctors, epilepsy foundation affiliates and researchers alike. All understood the importance of seizure diaries and everyone seemed impressed that we had taken our diary as far as we had. If anything, I came away with a sense that we're headed down the right path.
Philadelphia also turned out to be a great surprise. The downtown was clean and impressive, with lots of historic buildings, restaurants, bar, shops and more. I could easily have spent more time there. My only complaint was the cold. 30-40 degrees. For a California boy, that is cold. Brrrr.
Here are some pics I took with the not-so-fancy camera in my phone:
The show filled up a quarter of the Phili Convention Center.
Beautiful town hall was a block away from my hotel. And yes, I visited the Liberty Bell too.
If any of you live in Seattle, or close, you should try to attend the AES Shownext year. I know it's not a consumer show, but it may give you some insight into what's happening in the world of epilepsy.
Until next time...
-Eric
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