Finding out that CAFFEINE is a trigger

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jyearta

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I have drank coffee for all my adult life, NEVER thinking this was a trigger for me. After reading all the threads on this subject since I joined last year I change over to decaf. Then yesterday my husband made me a cup of coffee. I didn't have a seizure, but I felt like one was going to come on any min.

I would not have put the two together if I had not been in this forum.
 
I've found that not all caffeine is triggering for me. It helps if I don't consume it on an empty stomach, and it's best for me to avoid high-caffeinated coffee (like Starbucks).
 
Isn't this forum awesome for info? There is so much stuff I never would have thought of if I hadn't read it here!

I am like you, Nakamova. I think HIGH caffeine content is a trigger for me, but not just regular levels (like I can have a lot of coffee with no issues). Before this whole epilepsy thing happened, and I was young and stupid, I used to take Hydroxycut to stay awake and go out with my friends after working all day (after ephedrine was taken out, so basically a lot of caffeine) with no issues. Then one day I decided to take something similar because I wasn't sleeping enough, was in college, had to stay awake for a class lecture, etc. etc. Later that day, I had my very first seizure (at least my first tonic-clonic. I think there was a possibility I was having partials before this). Then something similar happened at another time. Of course I got totally chided for it by the doctors, and they assumed THAT'S the ONLY reason I had a seizure (which to me seemed totally FALSE because I didn't USED to have an issue taking that stuff), so they just ignored it until I had my second one - no stimulants involved!

Too much energy drinks also tend to cause me to have partials too... But it's hard to say if it's from them or lack of sleep, since I only drink them (drank, I should say - since I don't drink them anymore) when I'm really tired.
 
Yes, I used to be able to take all sorts of things without any problem, but now I have to be careful. In college I would take Vivarin (basically No-Doz), and I would be fine, if a little jittery. But I can't imagine taking it now, or drinking something like Red Bull either.
 
I feel the same, I now have one maybe one and a half cups of half cafe coffee every morning. Anything else I am having episodes all day.
 
Nak. I don't know if the caff. affected me so much when I was younger. But NOW --the age thing--I seem to react to many things.
I worked in accounting for 24 years. I drank alot of coffee then, I also had a lot of seizures then also.
It's when I looked at my seiz. diary that I'm noticing the way my system is reacting to things. I LOG EVERYTHING.
 
It's great that you able to be "scientific" about observing what things affect you for better or for worse. It takes discipline and alertness. I do think that as we age, those things can change -- our metabolisms slow down, hormones change, and we become more sensitive to stuff that might not have affected us before.
 
Nakamova said:
I've found that not all caffeine is triggering for me. It helps if I don't consume it on an empty stomach, and it's best for me to avoid high-caffeinated coffee (like Starbucks).
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I started having seizures BEFORE I started consuming coffee, so that really isn't an issue for me. I drink coffee just to stay awake and alert from the side effects of the AED's. And at most Starbucks, one can order de-caf coffee.
 
I was not a coffee drinker before having seizures either, and caffeine didn't particularly bother me. But I have found that I've become more sensitive since...
 
I can drink caffeine with no problem but I have to be careful about how much I drink at a time.

I can have one or two cups of coffee, even the speical ones from Starbucks and I'm alright. Even soda's - Coke, Pespi and those I'm good to go. I really don't drink energy drinks so I can't tell you too much about that.

I've noticed though that when I spend time with my grandparents at their house I'll drink cup after cup of coffee. She'll make a new pot if she knows I'm coming over and I usually end up draining the pot empty. I don't know how strong she makes it but I know it's regular coffee and not decaf.

Sometimes I'll have a seizure there at their house or a few hours after I get home. I didnt' put two and two together until less than a month ago.

I've been trying not to drink as much but when the coffee starts to get cold in the cup I just fill it back up with some hot stuff, I don't even realize I'm doing it. I've been trying to remember to only have a cup or two and put the cold stuff in the microwave and warm it up but it's just a normal thing to sit there and drink coffee with them all evening. I've been trying to remember to get a Sprite out of the fridge but grandma says "go get yourself a cup of coffee" so that's what I end up doing not even thinking about it.

I need to stick a post-it on the pot that says "NO REFILLS!!!", then maybe I'll remember. Grandma's memory isn't that great any more so just telling her to only let me have a cup won't do any good.
 
For 22 years here I was drinking 6 to 8 cups a day, having seizures at work (on one knew--setting in my office my back was toward the hallway--

I would come out of it, get the lipstick off my face, (I would smack my lips making a mess)

On each Neur. visit I would tell him about the No. of seizures, he never ask me anything about what I was eating (drinking)
 
decaf coffee still has some caffeine in it. In some cases it's as much as in a can of cola. So since you didn't have any seizures while drinking decaf, it's likely that you can tolerate some caffeine, but not the usual amount in regular coffee.

I'm sensitive to caffeine in a different way, though. The diuretic qualities of it are magnified, and it makes me pee A LOT. When I used to drink a lot of coke, I would seriously pee every 20 minutes for hours. I drink decaf everything since I figured that out!
 
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