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.
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7 comments:
I do think that caffeine may either increase or cause seizure depending on the amount that you take and the sentivity of your body.i have experienced a seizure after i took a large amount of coffe from macdonald "iced coffe". I know that my body is very sensitive. i always stay away from anything that has caffeine. that one day i decicided to test my body by drinking some iced coffee. after i drink the iced coffee, i could feel that something is not right. I knew that there would be an effect on my body, but i did not know the result would be a seizure because i never have seizure before. anyone out there that experience something related to caffeince, please share it with me
A small amount of caffeine seems to prevent seizures for me. I have epilepsy- simple partial seizures. Trying to find triggers.
Caffeine AND Sport drinks with electrolites have the same effect for those with a low seizure threshold. They both interfere with sleep! I love a good Starbucks from timetotime but half-calf or Decaf is best. Hard to believe but something as simple as caffeine can be fatal for an epileptic! I found out the hard way.
Caffeine is one of my triggers, for sure. I drink half-caf and even that can set me over the edge on occasion. I veer away from all caffeinated sports drinks as well.
I have found caffeine to be a trigger. I have only had 2 Grand mals in my life and have been on Dilantin for 7 years, but if I drink several cups of coffee I start to feel weird. I get a feeling over me and have to close my eyes for a few seconds. Petit mal? Not sure. This may happen a few times over the course of a few hours until the caffeine wears off. If I drink 1 or 2 cups I am usually fine, but it happens when I get to 3 or 4. I have cut way down and drink a lot of half-caf or decaf.
My seizures increased in intensity since increasing my caffeine intake. I used to be able to abort them before they became Grand mal by holding my left arm tightly while in the aura and shaking phase. This control was lost two years ago and on reflection my retirement and more drinks at coffee shops ties in with the change in my epilepsy.
I changed to a caffeine free diet last May and have noticed a big difference.the intensity is back to the old days and the last seizure was aborted as I used to be able to.
Interesting. For what it's worth, I have developed an Android application to track the level of caffeine in your system. May be useful.
http://www.seanschendel.com/caffeinetracker/
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