Epilepsy and Alcohol, Caffeine, etc.

[Bernard]

Is anyone aware of any definitive studies on the effects of stimulants and depressents such as alcohol, caffeine, etc. on seizure activity in epileptics? Dr. Manso has identified these as likely triggers for seizures in Stacy. In Stacy's case, she is borderline hypoglycemic and Dr. Manso says she should not eat simple sugars either (including simple carbohydrates like white rice, white bread, etc.).

It seems logical to me that epileptics would want to avoid consuming drugs that chemically alter brain function, but I see there are several posts in other forums indicating that epileptics are drinking these brain-chemistry altering drugs.

I'll see what I can dig up.

[Bernard]

Here is some good info related to epilepsy and alcohol, although no studies are referenced:

Alcohol can make seizures more likely to occur. It can make drug side effects worse and anti-epileptic drugs can exaggerate the effects of the alcohol. Excessive or heavy drinking is likely to increase the risks of seizures and lead to other health problems. Taken in moderation, however, many people with epilepsy will be able to enjoy an alcoholic drink. Other people will have decided that alcohol is not for them, perhaps because they don't want to take the risk, or experience has taught them that even moderate drinking can make their epilepsy worse.

...

Although caffeine in its pure form can affect the seizure threshold, there is no information to suggest that drinking coffee or tea as part of everyday life can trigger a seizure.

Epilepsy Action: Epilepsy, Alcohol and Recreational Drugs

The bit about caffeine is certainly not indicative of Stacy's experience. It has a very powerful effect on her - to the point that eating dark chocoloate (minimizing simple sugar) will usually trigger a seizure within 24 hours.

Research indicates that adults with epilepsy may have one or two alcoholic beverages a day without any worsening of their seizures or changes in the blood levels of their antiepileptic medications.

Alcohol : Epilepsy.com

It would have been nice if they had provided references to the studies they mention!

The authors of this paper have reviewed the safety of use of alcohol and marijuana by patients with epilepsy. Alcohol intake in small amounts (1–2 units per day) does not usually increase seizure frequency or significantly affect serum levels of antiepileptic drugs.

Alcohol and marijuana: effects on epilepsy and use by patients with epilepsy

This appears to be a synopsis of a paper that appeared in an Academic journal. Too bad the details were omitted as, IMO, they are always needed for context. It looks like the studies focused on anti-epileptic drug interactions and ignored the affect of alcohol on blood sugar, which in Stacy's case, is a huge factor in her seizure threshold.

It has been assumed that alcohol is bad for everyone with epilepsy. However, there is no clear evidence that infrequent use of small amounts of alcohol would be harmful to people with well-controlled epilepsy. However, in persons with uncontrolled epilepsy, even a small amount of alcohol may aggravate seizures and cause problems. Seizures can also be caused by missing medications when you drink, or by missing a lot of sleep.

Epilepsy and Alcohol

Yes, I'm guilty of making that assumption!

[Clarissa]

Hello - virgin visit from Clarissa!

I found a tremendous affect from caffine, which was even more noticable when I was off medication a few years ago. After a coffee I would experience an increase in myoclonic jerks, petit mal and, when I was off medication, grand mal seizures. These affects incouraged me to cut it out from my diet completely.
Cannabis does have a wonderful calming affect on my seizures. When I am experiencing petit mal seizures, cannabis helps my head to calm and relieve the feeling I get of pressure inside my skull. When this pressure has gone I then know that I will not have any more minor seizures that day. I dont find it helps my myoclonic jerks though, as I experience these all day every day!

I purchased a book a few years ago titled 'Epilepsy - Treating the natural way'. This was a good source of information and other chemical problems that can be found through diet. I will try and get the publishers name for your information.

I hope this is of some help to you Stacey and remember - you are not an 'epileptic' you are someone WITH epilepsy.

[Bernard]

Hi Clarissa, welcome to the forum!

Stacy does not drink alcohol or caffeine anymore. It's been around 9 years since the last time she drank a beer or soda. But she was always more sensitive to caffeine than alcohol (at least with regards to seizure activity).

I found Epilepsy ("The Natural Way" series) on Amazon. Is this the book you are referring to?

you are not an 'epileptic' you are someone WITH epilepsy

The definition of epileptic is "One who has epilepsy", but I get your point that it's better not to label. I'm not a vegetarian, I just don't eat meat. :wink:

[lindy]

I have no problem at all referring to myself as an epileptic because I am. It's just one of many things that I am and I have never understood why some people have a problem with that particular label. Labels are unavoidable - not just for epilepsy but for anything. For example, I am a woman, a daughter, a sister, a niece, a mother, a wife, an aunt, a mother in law to be, a horse owner, a dog owner, brown haired, right handed, and an epileptic. All are labels and all carry the same amount of weight.

[Bernard]

I'm not so sure about the term 'epileptic' because I've never encountered any negativity associated with it (ignorance is a separate subject), but with 'vegetarian' there is a wide breadth of connotations/stereotypes and, at least in my case, they really offer a misleading picture of me and my diet choice.

[Axa]

I don't notice any difference in my seizure pattern if I drink coffee or not. Sometimes I don't drink it for a long periods of time, usually while traveling. No difference. The same goes for alcohol; I drink just wine - just occasionally. Even my raging "Neurontin insomnia" seems not to do me any harm. I just can't find any trigger - and I am very meticulous about writing my E-diary. Even stress, chocolate & sodas & lights in clubs seems not to have influence on my seizure activity ...

It woud be great to know what your triggers are ... so that you know what you should avoid.

I simply live normal life, that's all, since that makes me feel good. I think of the E exclusively during the seizures (if I can think at all ) and a short time after them. I think that's the best for me.

But I like E-forums - it is always nice to chat with people who really KNOW what it is like. It's great that my husband is extremely understanding, but still, he can't know what I feel from time to time. That's why I love to meet all you guys & girls!

Love

Axa

[howdydave]

Howdy!

Everybody is different!

(I say that so often on these forums that, in time, you may get sick of hearing me say it!)

It all depends on your system and what drugs you are taking.

Some people are strict abstainers and won't touch anything (alcohol, nicotine, caffene, you name it) that might have an effect. Then there are others (like me) who feel that there are some quality of life issues here.

My first neurologist was a strict disciplinarian (then again, maybe he just didn't want me to try any booze since I was only 13!)

My second neurologist told me that everybody is different and that, if precautions were taken, one could experiment a bit and find out what effected them. At the time I was on a very heavy regime of barbiturates and drank a lot of coffee just to stay awake during the day. I am now off of barbiturates but I still love my coffee (regular, not decaf) -- about 2 pots a day! I have been known to have a sip (or two) of alcohol in my day.

[Bernard]

Brian: You're all individuals.
Crowd: Yes, we're all individuals!
Brian: You're all different.
Crowd: Yes, we're all different.
Man in crowd: I'm not.

[Bernard]

I found a nifty blog dealing with alcoholism and addiction issues. Just in case anyone is looking for inspiration.

[Elaine Howell]

I have no problem at all referring to myself as an epileptic because I am. It's just one of many things that I am and I have never understood why some people have a problem with that particular label. Labels are unavoidable - not just for epilepsy but for anything. For example, I am a woman, a daughter, a sister, a niece, a mother, a wife, an aunt, a mother in law to be, a horse owner, a dog owner, brown haired, right handed, and an epileptic. All are labels and all carry the same amount of weight.

Hi There

I think you'll find that people have a problem with being labelled as Epileptic simply because of the old asscociations of epilepsy and madness, withcraft, insanity, I've been researching for a book that I'm writing on my experiences (mainly bad ones) of epilepsy, and you could be locked up years ago and considered completely bonkers, possessed by evil spirits and generally crazy. The words Heretic, Lunatic, Epileptic all seemed to be used in relation to each other, and I would never refer to someone as Epileptic, merely someone who has the condition, I always say that I'm a Taurus and not Epileptic! The more we put this across to the great unwashed, and the idiots I've had to deal with in the past, the more we can help to reduce the horrific stigma that is attached to this common and oh so misunderstood condition. I'll keep trying to do my bit anyway.

Cheers
Elaine

[Elaine Howell]

Hi Again

I meant to say also, that having Epilepsy was grounds for divorce in certain countries, up until as recently as the 1950's!! Believe it or not, but it is totally true!

Cheers
Elaine

[brain]

Hi Again

I meant to say also, that having Epilepsy was grounds for divorce in certain countries, up until as recently as the 1950's!! Believe it or not, but it is totally true!

Cheers
Elaine

In the United States, it was a Stigma for a long
time, for in many States, a person with Epilepsy
couldn't even MARRY, and many of them were
sterilized so they couldn't even bear children!
Shocking isn't it?

The Dark Ages needs to be kicked in the butt!
Myths, Folklores, Voodoo Dolls, Old Wives Fables,
et cetera - all needs to go down the garbage
disposal .. and the LIGHT & TRUTH needs to
be shined forth; BUT for some odd reason, the
PUBLIC themselves are somewhat 'divided' in
being receptive (even in this current age) in
regards to Epilepsies!

Strangely, this even APPLIES to the very ones
who are TREATING those with Epilepsy / Seizure
Disorders! There are Epileptologist and Neurologists
who are STILL in the dark -OR- set in their ways
and ARE NOT UP-TO-DATE at ALL with the latest
trends/findings/and thereon in regarding treatments,
which even includes alternatives - even neurologist-
feedback; and are quite NEGATIVE towards it.
They are a divided group of Neuroscientists /
Neurology Medical Healthcare Group. Some are
Advanced and some are not.

I find this very sad, when they ALL should be
well in advanced together; just like many other
Specialties out there - which are very much in
tune with the latest technology, news, et cetera.

So there's a Stigma within in the Medical Doctors
in Epileptologist & Neurologists as well - a big
clash, and that SPLIT or GAP - needs to be
closed so there will be a unison.

In doing so will even help bring Epilepsy even more
"OUT OF THE SHADOWS"