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Burga

Coffee stopped my Epilepsy Seizures

Hi everybody,

I want to share with you all some wonderful news. I've been epileptic since i was 8 years old. Their effects produced traumatic experiences at school at the beginning, but after I started taking carbamazepine I succeeded at controlling them. At some points of my life, epilepsies disappeared, but they came back again very intensively when I was 27 years old.
This year, I started analyzing the non-epileptic periods in my life and I realized that in those periods I used to drink coffee everyday. I have to say I've been taking more than 3 pills of carbamazepine per day to be free of seizures in the last years (it makes me so tired). So, one month ago I started drinking 2 cups of coffee diary and reducing my carbamazepine doses every week.
Now I'm amazed that it worked, my epileptic tendencies at the morning have disappeared at all, even without taking pills. I would be glad if somebody tell me if they know about this kind of solutions or about similar cases related with coffee.

Thanks

Comments

Re: Coffee stopped my Epilepsy Seizures

Hi Burga,

The longer seizures that seemingly respond well with, or are also prevented by, coffee/caffeine, I call mine migraines, despite with, or without, headaches.

Coffee/caffeine doesn't seem to influence my epileptic seizures, distinguished from migraines, to any even long term statistically noticeable degree, in any good or bad way.

The rule of thumb is that coffee is bad for epilepsy: http://www.ncbi.nlm.nih.gov/pubmed/15121141
But, rules of thumb have many exceptions, and are sometimes near totally wrong: http://www.ncbi.nlm.nih.gov/pubmed/?term=caffeine+epilepsy

For me, caffeine withdrawal is worse than opium withdrawal, and the benefits of caffeine outweigh the drawbacks, though I seem to go through decades long cycles with caffeine.

Tadzio

Re: Coffee stopped my Epilepsy Seizures

i think it was the coffee i drank while hospitalized for veeg- that resulted in mere psycogenic seizures/ i didn't know it would do that b4 i went for veeg/i just didn't want the caffeine withdrawl migraine from hell plus the stay awake deal they put one thru/never thought it would help reduce the severity of seizures/enjoying starbucks thank you.

Re: Coffee stopped my Epilepsy Seizures

I have to drink Coca-Cola 2 cans every am or I will have partials or will be so foggy I just dont participate in life at all. I have tried to switch to coffee but it is not the same

Re: Coffee stopped my Epilepsy Seizures

I find caffeine (tea) is a trigger for seizures, esp. if I've experienced other triggers like mental or physical stress (and that is when I'm more likely to want tea lol. I used to just blame it on the stress factor so finally I started drinking tea a little more regularly to figure this out. Definitely it is a trigger. No more caffeinated tea for me!!

Re: Coffee stopped my Epilepsy Seizures

Actually my very first medication fighting epilepsy had caffeine in it made in France "doral" I believe ,  I had extremely low dose , when I came to the state my MD said you have such small dose you might as well use nothing and I stopped , some $3000 dollars later ambulance and ER he put me back on it ....I drank  very little alcohol; now none , at the time I was drinking 32 cups of coffee a day plus countless espresso , kept me going for these 16 hours shift and 3 months without days off , beautiful life of the restaurant industry.                                                      When my new neurologist find out about coffee he asked me to cut down I told him I will stop tomorrow  and I did overnight no effect , he could not believe I did not have any problems , I did not , no weigh gain , nothing .  

What was causing the seizure was a tumor and 27 later it decided to grow .....

 

Re: Coffee stopped my Epilepsy Seizures

Regarding coffee - FDA approved alertness aids containing caffeine, there is an educational book about Inattentive ADHD titled the How To Cure Hyperactivity book (1981) about Inattentive ADHD by C. Thomas Wild, introduction by Anita Uhl Brothers, M.D. which reports a dramatic, temporary improvement in sustained attention due to FDA approved caffeine meds (Tirend, NoDoz). The primary symptom of Inattentive ADHD is inattention. The book is about Inattentive ADHD, auditory processing, concentration, sustained attention, working memory, digit span, letter span, attention span, and alertness. There are a few cases where persons with epilepsy respond to coffee/caffeine compounds in positive ways; however, it appears that, in general, coffee/caffeine tends to lower the seizure threshold for some of those with epilepsy (not ADHD) so a person with epilepsy may wish to look at that possible consequence. That outcome may apply to some, not to others. Thank you for sharing your response to coffee which, for you, is positive. Apparently some persons with some kinds of epilepsy can drink coffee/caffeine products safely. Besides the book by Wild, there are many reports associated with 5-Hour Energy products regarding temporary improvements to concentration for some users. The thing with coffee/caffeine is that there is a wide variety of known responses: some find coffee useful, others drink coffee for the taste, and others find coffee unwanted and choose to avoid it. Coffee/caffeine is kind of an individual response. Coffee is used to treat apnea in some infants. Coffee/caffeine works for some, not for others. Are there a few persons with epilepsy who respond well to coffee without unwanted side-effects? Yes. Are there also some with epilepsy who find the seizure threshold lowered/epilepsy meds do not work as well with coffee? Yes. Best wishes.

Re: Coffee stopped my Epilepsy Seizures

Some people will stop drinking coffee or anything with cafine which is their choice. I have been drinking coffen since I was a early teen and I can say that if I don't have coffee I will generally have a glass of iced teaby me. I drink about a pot of coffee a day and my tea intake is close to a gallon in 3 days.

I am gladto read that your seizures have been reduced in number and I hope you become seixure free. Butunless you included yout neuro in your plan you might have had problems that could have been life threatening. I know. Been there done that. It wasn't a pretty picture. Status epilepticus in bad but after gettng me out I went back into it again.I came out of a coma 3 days later. So be careful and if you are changing your dosage do let your doctor know that way if anythng happens the people helping you can find out medications and amounts thet need.

Also have your PCP and Neuro giving information about you to each other. It wasn't easy but mine do talk back and forth from time to time. One works in 1 hospital the other in a different hospital. I wouldn't change either of them because they both have been good for my entire health.