LACK of caffeine trigger?

[Mellie]

So last night I had some very severe tonic-clonic seizures. Other than last night, I've had only one other cluster in the past like 6 months. I noticed something though.. Both times I haven't had any caffeine in my body. I know that sounds normal for most people, but I'm a serious Mountain Dew addict. I have it by my side at all times. In art, some of my Kindergarten students even helped make me a Mountain Dew holder to carry with me. Needless to say, Caffeine is always in my body. Like, always. Even before bed and first thing in the morning. Wake up in the night? Grab some MD and go back to bed.
..Except for those two times I had the seizure clusters. I had had no caffeine for hours and hours, and even then it was just a sip. Which begs the question, did caffeine (or the lack thereof in this case) have anything to do with my seizures? I've been looking up info on it, trying to find if there's a link between the two, but all I can find is stuff about caffeine possibly triggering seizures. There's nothing to be found about the LACK of caffeine triggering seizures.. Any ideas?

Oh, and hi. I'm MaryLynn. I just joined on here.

 

[SlimBlue]

Hi MaryLynn welcome to CWE

If you have a regular very high caffeine intake, sudden lack of it puts your body into withdrawal. Depending on how high your regular dose is, this can actually be quite severe.

Withdrawal is just the kind of thing that could trigger seizures. I guess this is why all the AEDs have big warnings on them not to stop taking them suddenly- as that can cause *more* seizures.

Controlling seizures is all about keeping a constant chemical balance in your body, sudden changes in that are bad for us as people with epilepsy.

 

[Cint]

Like SlimBlue said, it is more than likely the withdrawal effect from the Mountain Dew that is causing the the seizures, as caffeine is another 'foreign substance' to the body. More info from http://www.epilepsy.com/learn/triggers-seizures/drug-abuse

Nicotine and caffeine

There is no evidence that using these two popular legal drugs in usual or ‘normal’ amounts affects seizure control for most people with epilepsy. Occasionally there are stories of susceptible people who experience seizures, especially if they use large amounts.

For caffeine, it may be difficult to tell how much you are getting, since many different beverages, foods, and medications include it.
~Caffeine may affect a person’s seizures by interfering with sleep, rather than triggering seizures directly.

 

[valeriedl]

I very rarely drink caffeine. I'm ok with a little so often but if I drink a ton of it I can't sleep and will have seizures. I don't know if it's just the caffeine itself that's causing the seizures or a combo of that and not sleeping. In a way you could say if you don't drink chances are you won't get drunk off of one beer but if you drink 3 then you are going to get drunk.

If you drink a ton of caffeine every day and you are able to sleep just fine then your body is used to having it in it that it causes no problems. Again comparing it to alcohol it would be like if you normally drink 3 beers a day then it could take 6 to get you drunk.

I agree with the others. Since your body is so used to having caffeine in it then could be going through a sort of withdrawal or shock to your body because it's lacking something that it's so used to having in it and that's what could be causing the seizures.

 

[George__]

Caffeine and I seem to be fine but everyone is different

 

[rgillen]

I think that my condition is very similar to yours

I know that this thread is very old, but it applies to me too well for me to not post.

My condition is pretty mild, where when I have a seizure, I simply lose my short term memory for periods of about 15-minutes a few times throughout the day. But then I can go for 2-4 months without any signs of a seizure.

I first started experiencing these early in college. The college had a bottomless cup system going on for their Pepsi fountains. Thinking I could at least manage my weight a bit if I switched to Diet Mt Dew, I took full advantage of this bottomless program. I had a few of their refillable, liter sized plastic cups spread around where I always had access. It became an uncontrollable habit for me, but at such a low price and low impact to my health (it was Diet afterall and contained no calories!) I didn't think it could possible be a problem. Not for my weight, and certainly not for any Epilepsy which happened to start occurring not long after I got into the habit hardcore.

But there seemed to not really be a connection. I drink the stuff all the time, almost never drinking less than 2 liters in a day, and the seizures were so far apart that they couldn't be caused by the caffiene. But I started noticing that seizures always seemed to happen when I was in a situation outside the norm. Visiting my parents for an extended weekend, starting a new job, or going on a vacation. I started to think that stress may be a cause - although these things didn't really stress me out, they must have something in common.

Over a decade later, I started getting disgusted with my addiction and quit cold turkey. No issues since I still had a large supply of my medication which seemed to be doing a good job of eliminating the seizures. But my prescription was a year old and needed to be renewed if I was going to keep on it. So I just weened myself off of it keeping an emergency supply around just in case. I was doing well for about half a year.

I had some symptoms at work that felt like the onset of a seizure, but nothing came of it and a dose of the medication helped to make sure that was all that there was.

Then about 9-months after I quit my Diet Mountain Dew addiction, I was feeling pretty good about myself and rewarded myself with a drink, thinking I final had control of it. Within the next few weeks I was back on to drinking a large amount every day...I guess I was not in control as much as I thought. But I took a day off and SURPRISE, my first real seizure since the experiment started hit me at work. I went home and had a couple more before the end of the day. The trigger now seemed to be pretty clear.

I read up on it and found some sites suggesting the artificial sweetener in the drink is a likely cause, which convinced me to quit all over again. I was good for a couple more months, until I downed a 2-liter bottle of Iced Tea one day. The day after that - coming down off another caffeine high - and I had another bout of seizures.

Now it seems all too clear. Seizures always occurred after I had a lot of caffeine the day before, and nothing to give to my brain the day of. Visiting family where there was no supply for me. Starting a new job where I was unsure of how I was going to get my fix. Or maybe just running out, and seeing that the prices at the store were too high for me to refill my supply until I could find a good coupon in a couple days.

Now I am about 40 days from my last serious dose of caffeine or any seizure, and hoping that I have found my trigger. I feel more encouraged that I see other feel this is a trigger for them as well.