Seizure free for 10 years - what about alcohol and coffee?

[angelstears]

I'm a 19 year old female, now a busy college student...

I experienced some seizures as an infant, was put on medication for several years, and lived seizure-free until the 3rd grade. My doctor had been planning to take me off the meds very soon so my parents were disappointed when they told us I'd have to stay on for a few more years. I think the last time I took my meds was back in the 6th or 7th grade, and my last seizure was the one back in 3rd grade. I ended up at the ER recently but xrays, CTs and blood tests all came back normal, and the ER resident told us it was simply fatigue.

My school's hospital is closeby, so getting rushed to the ER while at school is usually not a problem. I can't handle coffee though, and I haven't tried alcohol at all. Drinking coffee itself is not a problem, but I appear to be oversensitive to caffeine - a tall Americano at midnight drives me into chronic fatigue for 'at least' 2-3 days, usually longer. A latte during the day pumps up my heart rate somewhat noticeably. My friends and seniors ask me often why I don't drink, and I'm sick of telling them that I'm too weak.

Can a glass or two of beer or a light cocktail harm me?
I'm seriously afraid of not being able to handle alcoholic drinks.

[skillefer]

Your best bet is to just avoid the alcohol and caffeine. As for answering questions from friends as to why, just shrug your shoulders and say you prefer to watch everyone else be silly... Or you can say your avoiding the empty calories...or just be honest and say you don't want to. Believe it or not, most people will just shrug and say ok...when out with the buddies, order a virgin drink... Hope that helped!

[Nakamova]

Hi angelstears, welcome to CWE!

I don't have a problem with either caffeine, as long as I pace myself, and stay away from Starbucks coffee (which appears to be super-caffeinated). But I try to consume any caffeine with or just after meals to slow absorption, and I tend to drink tea rather than coffee -- tea enters and leaves your system more gently and gradually. If you really need caffeine, try a small cup of black or green tea, and see how you feel.

As for alcohol, I can do a few drinks of beer or wine, but no more than one cocktail. And not an an empty stomach.

Tolerances are different for everyone, but if you are at all worried play it safe, and avoid alcohol and avoid stimulants -- not only caffeine, but also Nutrasweet (aspartame) and MSG, which mimic excitatory neurotransmitters in the brain.

[PhylisFeinerJohnson]

Large amounts of alcohol are thought to raise the risk of seizures and may even cause them. When you drink alcohol, it may temporarily reduce seizures for a few hours, but then increases the chances of a seizure as the alcohol leaves your body. But you don't exactly sound like you'd be binge drinking!

As for caffeine, caffeine stimulates the nervous system. Adrenaline is released and the liver begins to emit stored blood sugar. Insulin is then released, and blood sugar drops below normal—a common seizure trigger. And caffeine can be a “stealth” drug, too. It can be found as an ingredient in medications, including some antihistamines and decongestants.

[Endless]

Hi, Angelstears. And welcome to CWE!

I think everyone has a different tolerance for alcohol or caffeine. I can't have even one drink of alcohol or I trigger a seizure. But I seem to be fine with caffeine. I don't have much when I do drink it. Just one latte. (espresso has less caffeine than a regular cup of coffee.)

It all boils down to what you are willing to risk for a drink. If you had a drink, would the fun of that outweigh having a seizure, and all that goes with that?

[Zoofemme]

Since you already know that caffeine is an issue for you and you drink it in moderation then I think you are wise to avoid alcohol as well. Don't let the pressure from your peers lead you to do something that you know you don't really want to do.

I've been a teetotaler a lot longer than I've been having complex-partial seizures...you would be more likely to find me drinking water or soda than alcohol. I got more respect for not drinking than I ever did when I drank. I think those that try to pressure people around them to drink have their own issues and at some level don't want to "look bad"...just my

[marion]

It sounds like you don't miss alcohol or coffee, so why not just go with that. And if anyone asks if you'd like a drink, a simple answer may be best... "no thanks."

[Blondie47]

Angelstears

As a mom, I say don't do what you don't want to do. Why risk it -- really, for what, your friends aren't the one who will suffer the consequences. But you will.

Just go with --I don't drink coffee or alcohol, period. There are so many other delicious drinks. Tell them what you do like to drink. If your hasseled, then make new friends.

But this is just a mom's opinion -- try talking about this with your parents!

Take Care

[BecE]

I'm 24 years old and I completely understand your problem. Coffee has similar effects on me. I still drink it quite alot however, never at home but as a student at uni or TAFE I have always drunk quite abit of the old energy drinks and coffee. I see it as a vicious cycle. I don't sleep well, I get tired because of my medication, so I drink coffee, get hyped and shaky, can't get to sleep etc. Not good, but I can't help myself when I'm studying. It's a bad habit.

As for alcohol, it is very hard for me not to drink when I'm out with friends so generally I drink anyway. This isn't a matter of peer pressure, for me, it's a matter of having a good time out and lasting the night with everyone else. I haven't had a really bad seizure in a long time so I have not considered testing the limits as a bad thing when it comes to my epilepsy and alcohol but it is different for everyone. I know not to go too far because it does have an effect on my epilepsy/medication, this may not happen on the night but one or two days later I'll be having small seizures repetitively for several hours. I do not binge drink if possible and I try to stick to the one every hour policy. What I am trying to say is that realistically at some point you will probably have that drink, and when you do take it easy, pace yourself and as soon as you start to feel the effects of the alcohol stop and drink loads of water. Just be sensible. I know how annoying it is when you see that look in someone's eyes saying "she's really straight laced, she doesn't drink much" and some people will outwardly ask you why you don't drink, or why you don't drink much. I either tell them the truth about my epilepsy if they are a friend, or I tell them that I just don't feel like it and would prefer whatever it is I'm drinking. If you're desperate... drink coke. Who's to say you're not drinking bourbon and coke? Hope this has helped.

PS. One place I have never gone and will never go no matter how few seizures I have is drugs, and if anyone questions that I immediately tell them I have epilepsy and take medication for it.

[RobinN]

Rebecca's first seizure was after a Starbucks Vanilla Frappachino. She later has realized that it isn't necessarily the caffine, but perhaps the chemicals or the milk products. She has a GI attack, and feels awful. Good thing, she now stays away. She and I both now have major reactions following a MSG intake. The ingredients in these drinks at Starbucks are very questionable. Maltodextrin is another name for MSG, and there are a few other hits on that list, so I view them as extremely neurotoxic. Unfortunately caffeine is the only one that has the bad "rap" in society.

[gigi]

you sound like you already have a good head on your shoulders! We all have to decipher what our brains can handle, or not. Better safe than sorry. Us seizure brains need to exercise good judgment when it comes to chemicals. The jury is no longer out on neurologist toxins. We have the luxury now of (hopefully) knowing ahead of time what can stimulate our brains to the point of a seizure through what we ingest.
My stress level is a good barometer on what I can handle. Coffee is alright most days, other days, it makes my head feel like it's in a vice. Since anxiety is an ever present villain for me, caffeine can trigger that response. Alcohol - one drink in a sitting is fine, but the depressive affect can be taxing on our brains. Focus your energy on your career goals, and not fitting in, after all, peer pressure never actually goes away, it is here to stay even when you get out into the "real world".

[gigi]

neurologist toxins?? Okay, spell check goofed with my reference to the brain toxins in food. Although, I suppose some neurologist could be toxic to some of us.

[Endless]

Hey, my first neurologists WERE toxic! So I think the auto-speller got it right! lol...

maltodextrin = a type of glucose (or sugar), that is sometimes made from wheat (mostly in europe), but doesn't contain gluten due to it's processing. In the U.S. it is mostly made from corn.

MSG = monosodium glutamate, a salt contained in the amino acid Glutamic Acid. Now it's rarely made from wheat gluten, most often made from bacterial fermentation of sugar beets.

Both nasty stuff, IMHO.

My general approach is if it is more than 4 steps away from pulling it right out of the ground, don't eat it. (harvest it, wash it, cut it, cook it)

[valeriedl]

My neurologist said to stay away from both caffeine and alchol in general.

I'll drink soft drinks when I go out but I'll usually get sprite. I'll have maybe a cup of coffee with caffeine once a week, but usually it's decaf. I did drink alot of caffeine but when the neurologist told me to cut back I did. I'm not sure if it decreased the ammount of seizures that I am having but I felt it's better to be safe than sorry.

As for alchol I was never a big drinker to begin with. Every so often I may have a glass of wine or a mixed drink, this is months apart though. Everyone laughs because I'm a funny goofy kind of person to begin with and they always say that alchol would bring me down from the "buzz".

The only thing that I hate is that since I can't drive there has to be another person there that isn't drinking too that may want to.

I'll even tell people that I have epilepsy and that's why I can't drink. I don't know if you feel comfortable telling that to people or not. When I tell them they seem to understand and don't bother me about it, they just bring me colas.

[George Earl]

I'm decades older than you, but have learned that caffeine and I just don't get along. Oh, I love the myriad of tastes and names of coffee nowadays, but it is sure to bring on throbbing headaches, short temper, trouble sleeping--and many times seizures. My "normal" amount of seizures is one per month, usually at full moon time and within two hours of having awakened. Why don't I give up coffee? Oh, maybe because I'm not that much in love with myself! And, of course, I always go on to explain that decaff coffee isn't that tasty. Or is it? No, if you find coffee encourages your type of seizures, give it up before it becomes a habit.

[RobinN]

maltodextrin = a type of glucose (or sugar), that is sometimes made from wheat (mostly in europe), but doesn't contain gluten due to it's processing. In the U.S. it is mostly made from corn.

MSG = monosodium glutamate, a salt contained in the amino acid Glutamic Acid. Now it's rarely made from wheat gluten, most often made from bacterial fermentation of sugar beets.

Both nasty stuff, IMHO.

Only if there is no (zero) free glutamic acid in an end product can one legitimately claim that there is no MSG. The burden of proof for a claim about the absence of MSG must lie with those making the claim.

If you want to find out if there is processed free glutamic acid (MSG) in a product, you must ask the manufacturer for information about "free glutamic acid." Don't ask about "MSG." Manufacturers find it convenient, when speaking to consumers, to tell them that there is no "MSG" in their product, meaning that there is no ingredient called "monosodium glutamate." Even if a manufacturer tells you there is no MSG in a product, there may be autolyzed yeast, hydrolyzed pea protein, carrageenan, sodium caseinate, enzymes, and a whole slew of other ingredients that contain or create processed free glutamic acid (MSG) during manufacture.

http://www.truthinlabeling.org/nomsg.html
(maltodextrin is one of those "other ingredients"

[valeriedl]

Last night I had two cups of coffee with my grandparents, I've been visiting them alot and every time I do I will usually have a cup.

When I came home I noticed my hands were shaking a little and was feeling kind of edgy. I was trying to write but things that I was trying to put down on the paper just didn't want to go down right.

I know I wasn't having a seizure, but I do know I need to lay off the caffene. I'll have to start bringing some decaf with me on my next visit!

[JimNavy]

I can say at least in my part I have been drinking coffee for the last 8 years. It has tapered off quite a bit but I was drinking a pot by myself at one point. I have about 3 cups a day now. If it is strong coffee, just one.

As far as alcohol goes, none under 21 (there I said my responsable thing) I can tell you without a doubt that one of my seizures was caused by it. I was binge drinking at a party. So if you do drink, do so in moderation. My Dr. said that one or two here or there is ok.

But I need to avoid, stress, large amounts of alcohol and lack of sleep.

[George Earl]

Last night I had two cups of coffee with my grandparents, I've been visiting them alot and every time I do I will usually have a cup.

When I came home I noticed my hands were shaking a little and was feeling kind of edgy. I was trying to write but things that I was trying to put down on the paper just didn't want to go down right.

I know I wasn't having a seizure, but I do know I need to lay off the caffene. I'll have to start bringing some decaf with me on my next visit!

I used to put down the advice I'd been giving regarding the connection between caffeine and possible seizures. That is until I began drinking fewer cups of coffee each day. Maybe retiring had something to do with it. I didn't feel it necessary to have 10 cups or so in front of me at my desk during the course of one work day. After all, didn't coffee make this New York guy look "butch" (= masculine) or "right on track" (= able to do a superior job)? Well, no, with all considered. I am now having but one cup (or 2 if I've been a good boy) per day, and find that my seizures and headaches are far fewer, and much milder. Try it!

[henhouse]

Seems like avoiding alcohol is actually one benefit of anti-epileptic drugs. anti-epileptic drug's + alcohol + driving = an especially bad idea. Depending on blood levels, it could be a criminal act. I am now 54 y/o, with a hx of regular beer consumption as a twenty-something, tapering significantly over time. Without going into all the details, I believe my life experience qualifies me as an expert on alcoholism. This includes, but is not limited to, my first wife became an alcoholic during our marriage, about three years into a ten year marriage. I loved her; imagine my shock during year nine when our marriage counselor looked at me and said "why do you stay?". Does anyone else out there know the delight of getting out of a marriage to an alcoholic? (I remarried two years later and my current wife and I have two children). A best friend and former drinking buddy, now out of the area, has been a recovered alcoholic for about 20 years, but has a host of other physical and mental issues. Another friend of 25 years, who otherwise truly has the world at his feet, has chosen wine collecting as a hobby and has let me know on several occasions that he wishes he would cut back the intake. My epilepsy began at 43 y/o, slowly at first. I was drinking moderately, and never to excess, at that age, so there is no obvious connection. Now, I do have had a glass of wine, even if I'm driving, at the start of a special meal out, which I may do about twice a year. I drink a non-alcoholic beer about one time a week. I am remarried. My kids, ages 14 and 12; are aware daddy cannot mix alcohol and his medication. In closing, let me just say many a time I have seen alcohol as a good thing in moderation, but "there is many a slip between the cup and the lip." (No such thing as a sure thing?). Now, I'll get down off my soap-box.