Caffeen

[valeriedl]

How bad is it to drink caffeine when you have epilepsy?

Normaly I drink stuff that doesn't have caffeine but sometimes I will have a coffee or soda that does.

My husband yells at me if I order a Coke or something like that when we go out to eat because he thinks I'm going to end up having a seizure. It doesn't seem to bother me at all but I wanted to know what you guys have to say about it?

 

[epileric]

I have a coffee with caffeine in it every morning.

I can agree that it's probably not good for seizures but I think everybody has their personal limits as to how much of each and which ingredient they can take before reacting badly.

 

[momof3boys]

Thats one of my very bad habits.... I love diet Coke! I have been trying to limit myself on the caffiene. I had two diet cokes today. I really only should have had 1, but I had another for dinner!

 

[Nakamova]

I usually drink tea in the mornings and a diet soda in the afternoon. Today I had two cups off coffee in the morning and felt fine (though briefly buzzed). I'm usually fine with caffeine in moderation. I try to avoid consuming it on an empty stomach, or after 4pm, and I never drink Starbucks coffee -- that seems to be super-caffeinated, and gives me nasty headaches.

So as Eric says above, everyone has different thresholds. If I were to try and go off meds, or were feeling unusually stressed I would avoid caffeine (and alcohol) altogether.

 

[Endless]

Everybody is different. I don't drink things high in caffeine because it is a seizure trigger for me. I may drink an unsweetened ice tea or a decaf coffee once in awhile, but that's it. If I do drink caffeine, the seizure doesn't come right away - it's hours later for some reason. Same with alcohol. I don't drink, either. But that's me.

Do you keep a seizure diary? That would help you figure out how coffee is affecting you, if at all. It will also help you identify any other triggers, and/or patterns in your seizures, as well as get a clear picture of how your meds are affecting your seizures and any side effects. Here are some resources:

http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[Aubrey]

I drink it in the morning before I leave the house. I drink it when I get where I am going. I drink it when I get there. I drink it in the afternoon. I drink it after dinner. I am drinking it right now. And it is 2:23 AM EDT. Mystic Monk Irish Cream to be precise. Point is, just because it is a trigger for some doesn't mean it is a trigger for everyone.

So, if it doesn't bother you, you should tell your hubby to let you enjoy your Coke. - I don't know how it tastes, but they do make a caffeine free Coke, unless it is the effect you are going for. So there is always a substitute, even though it might not be quite the same.

 

[valeriedl]

I do keep a journal and I've never noticed having a cup of coffee, even the strong Starbucks kind, or a Coke here and there has ever done anything to me.

He's just the kind of person who hears that since something may trigger a seizure for someone means it's going to do it to me too.

 

[Ann T.]

Hi, Valerie: Tell your husband to take a chill pill. Caffiene in moderation is fine, but it also depends on how sensitive you are to caffiene (just from reading your post, I already know how sensitive your husband is.), In all honesty, I'd steer clear of Monster & Red Bull. But this is just me. Take care.

 

[Rag]

I think that as previous posters have said, it depends highly on your individual sensitivity to caffeine and whether it's a trigger for your seizures or not. Just because caffeine can trigger seizures for some people doesn't mean it does for you, and I'd assume you to be the best judge of that unless the husband is noticing something that you're not. If the latter case applies he needs to calm right down and tell you, specifically and with reference to facts that you can both agree on rather than his feelings on the issue, how he thinks caffeine is causing a problem instead of getting all emotional with you. If he can't or won't do that, but still insists you shouldn't be drinking any, I recommend telling him that as the only evidence of a problem appears to be with his feelings rather than your health, he could do with going and seeing a therapist to sort them out a bit. WARNING - positive reaction not guaranteed!

Personally, I find a moderate amount of caffeine, spaced throughout the day, is mostly beneficial and may even help to keep symptoms under control. I wouldn't want to touch things like energy drinks, which contain far too much in a single hit, but I always try to make sure I have some coffee in. It can really help with daytime tiredness and aura-like symptoms at times, and I've noticed that most of the worst experiences I've had in recent times have been either when I have gone a day or several without caffeine at all, or early in the morning before getting up when any effects from the day before will have presumably expired. The only time it might actually have a negative effect on symptoms is if I have too much, or shortly before going to sleep (which is when I get actual seizure symptoms).