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George R
Coffee a Comforter?
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Having dealt with my own epilepsy for almost 40 years, I've heard caffeine referred to as "the" thing that can bring on seizures--in not just we 55-million people worldwide who have it, but in so-called "normal" folks who've never had a single seizure. I keep careful record of my seizures, and they're usually one every three weeks, often introduced by a day or two of severe headaches. But am I bringing on both by having even my one cup of coffee in the morning? Or is even decaff responsible? I heard a myriad of opinions from other folks with epilepsy. My problem? I'll stay off it for a while, then say, "Oh, why not!" Back I go, and the seizures continue. I guess I should be something of a so-called "lab rat" and be just plain studied for six months. How does caffeine affect you? More seizures?
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WOW! I always assumed this was in my head but last weekend I got coffee while I waited for my flight to board. Only five minutes after my first sip, my hand started clinching (this happens before a grand-mal). I knew there had to be a relation! I wonder why my doctor never mentioned it? I've been going to doctors since I was 7-- at least 10 doctiors failed to mention this to me.
Well, now I know. Thanks for this thread!
A message for those not affected by caffiene: you are probably fine if you haven't noticed it yet. Alcohol, strobe lights, and most other triggers don't affect me. Strobes are just annoying :)
I have never heard that coffee brought on seizures and I've been drinking coffee for 20 years now! It's the only thing that keeps me going during the day--so I hope it's not true.:) It hasn't affected my seizure activity at all--only alcohol does that. Is there anywhere I can find out more info about this?
T.
Hey George!
Caffeine affects me big time. My neuro told me to go off of it about six months ago, and in the past couple of months my seizures have improved a bit. I still get them (just simple partials in my arm), but not as often, and I even have several days at a time where nothing happens and I feel - strangely enough - normal!
I still drink decaf coffee, though. My husband only makes decaf now in the morning, and my coworkers at work have even switched to decaf so we can all share the same coffee pot. (I can't tell you how much I love my coworkers!)
My neuros are suggesting that my problem is a cerebrovascular one. Coffee is a vasoconstrictor - it constricts the arteries in the brain. I've found that I have a terrible time with other vasoconstrictors, like nicotine and Sudafed. In fact, I had a head cold several weeks ago, went on Sudafed, and I had the strongest and longest arm seizures that I've ever had - I even had the first nighttime seizure in a year. (Tegretol usually has them under control.) I couldn't figure out what was going on, until I read that Sudafed was a vasoconstrictor.
Anyhoo -that's my experience with caffeine - I'm just glad that they make decaf coffee and decaf Diet Coke!
Stephany
HI GEORGE,
I SUPPOSE BEING IN "FRIENDS" COUNTRY THEN YOU ARE SUPPOSED TO LIKE COFFEE!
I CAN'T SAY THAT COFFEE AFFECTS MY SEIZURES.
I VOLUNTEER WITH EPILEPSY CONNECTIONS OVER HERE IN SCOTLAND (FORTH VALLEY PROJECT) AND HAVE NEVER HEARD ANYONE MENTION COFFEE BRINGING ON SEIZURES.
I WOULD ASK YOUR DOC WHAT HIS TAKE ON THIS WOULD BE.
TLBY&KY
ADZ