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

[George Earl]

Drinking, like so many of those other "Ok for some, but not for others" type things is always a topic of conversation among we folks dealing with epilepsy. I do not drink, largely because I knew of a grandfather on my mom's side who died quite young in a matter having todo with alcoholism. But then, too much caffeine can get me first banging away at the head, then dizzy, then down on the floor from a seizure. Over the years I've tried to give it up, and am doing well. But then, do I miss the taste of a well-brewed cup of fresh coffee, especially here in New York.

 

[valeriedl]

Thanks george, I always try to drink decaf everything. I do drink coffee, decaff at home, and when I was at my grandparents they try to force everthing on me, food, something to drink and the sorts. I'll usually have one cup of coffee with them which doesn't bother me at all. However I was with them that night longer than I usually am so I had 2. I don't know if she made a strong pot or what, but I know now to only have one.

 

[Endless]

I can't drink any more. Not even one tiny glass of wine or it will cause a seizure about 5-10 hours later.

I used to have an extensive wine cellar, with truly wonderful wines. Wine tasting and collecting was my hobby. Also had a fully stocked bar and loved inventing fabulous drinks for my friends that made them laugh with surprise. Yesterday I gave it all away to one of my friends, including my 120+ bottle temp controlled storage unit that held the best of my wines. I'm so sad. Not particularly because I watched my booze hauled away. More because it was symbolic of huge parts of my life that have been hauled away because of the darn E.

My friend gently reminded me of third world countries where they've never even seen a bottle of wine, or a car, or a swimming pool or the ocean, or an ATV, or a job outside of rice fields or herding goats, or any of the other things my life doesn't have any more. As she put it, "You have a high-class problem."

So I guess my job today is to make a list of all the things I'm grateful for. Like good medical care (here we don't die from a cut on the leg), good friends, at least a couple of good family members, the ability to care for a pet, the prospect of employment again someday, a roof over my head and food to eat, clean and safe water to drink, clean air to breathe.... All the things that we have as citizens of developed countries.

I think people don't miss what they've never had. Maybe being here is not such a big advantage? Except for the clean drinking water, food, and good health care, I guess. Smiling.... those are big ones.

 

[George Earl]

Congratulations on saying "Goodbye!" to that wine cellar of yours. You didn't really need it, did you? And it's no "old wives tale" that drinking can bring on seizures in a majority of us. Just as caffeine does in me. And unfortunately many neurologists do not tell us this. Unless, of course, you consider "Aw, it depends on the person" a sufficient answer. I've stayed off alcohol drinking (and collecting) all of my adult life. I'm still thin, though at middle age in the USA, don't spend as much unnecessarily, and have learned to make social contacts far away from bars. Be proud of yourself. It sounds like you recognize what's going to help you tremendously. We're with you!

 

[sandi]

mom

Moms would tell you it's not worth either the caffeine shakes or the alcohol problems.It really is no fun hugging the porcelain God or trying to remember what you did the night before.
Realistically you'll have to probably figure out your own limits, But I'd prefer you didn't

 

[Endless]

Were you talking to angelstars? She said she hadn't tried much alcohol at all. And I was never a big drinker - in moderation but high quality what I did drink. I don't think either of those things drives you to worship the great porcelain god or black out. But it can provoke a seizure or make you feel really tipsy because of the meds.

I think the question for people with epilepsy is mostly can they drink at ALL? Some say they can drink in moderation and not provoke a seizure, but when on these incredbly powerful meds it does other stuff as well. Is there such a thing as moderation when on AED's???

 

[Ruth]

I started having seizures when I was 6 years old. I am 67 years old now. When I was a teenager, I did not drink coffee or alcohol. A lot of supposed friends made fun of me. I did not care. I felt that if they were my friends they would respect my health and my decision. I also decided on my own not to drive when I turned 16. I thought what if I killed myself or someone else.

When I was dating, I refused to drink at college. Would friends respect my wishes? True friends would respect my wishes. I got married and my husband was drinking until my mother came and stayed with us a few days. She was an alcolocic. My husband had to go to the store and buy liquor for my mother constantly. Then my husband quit drinking.

You will make many friends here. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

 

[droolmonster]

alcohol and coffee

I drink both alcohol and coffee. I've drunk coffee since I was five, that's just how I was raised, was with coffee. By the way, you drink coffee in the morning, not at midnight. Definitely not an americano, that's strong stuff.

As for the alcohol, I wouldn't get drunk. Puking isn't fun, and it's bad for your seizures. One beer, a glass of wine, that's fine. So, you can get tipsy, but you can't get drunk. No one really should get drunk, it is so bad for you. But that's culture for you.

I would recommend at least having a beer if people are drinking around you, because people get drunk together. Doing it alone is lonely and probably means you have a problem. Watching people get drunk is lonely because everyone is getting stupid and having fun, and you still have full capacity. Getting drunk with friends though, is really fun. Just face your fear. If you know your'e safe and with people who will take care of you, there's no problem with enjoying a beer or two. Three may be too much. You can't be a designated driver anyway, so pack 'em away.

I only drink socially. Sometimes I think that doctors tell us that we can't have any fun because we have seizures. No drinking, no flashing lights. I mean, what's life without inebriation and flashing lights? My seizures aren't triggered by flashing lights, so I don't worry about it. I love flashing lights.

 

[Ruth]

If you know your'e safe and with people who will take care of you, there's no problem with enjoying a beer or two. Three may be too much. You can't be a designated driver anyway, so pack 'em away.

Do you drive without a designated driver? What do you think about driving and seizures?

I decided at the age of 16 not to drive. The reason why: I do not want to kill myself or other people. I am 67 years old now and I have never regretted that deciscion. I take public transportation or I walk.

Not to long ago, on the news, a person with epilepsy had a seizure at the wheel. She killed 3 people and now she has to live with it. She woke up at the hospital, they stopped her seizures.

 

[Debbie53]

Caffeine and Alcohol

My neuro 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 neuro 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.

Hi valeried, I went to see a neurologist a couple of years ago and he told me not to drink coffee. He didn't explain why. I couldn't ask him why as I was in a bad way due to transitioning off keppra and going onto zonisamide. I was getting withdrawal side effects. He didn't ask me how I felt either.

Now I know why I should not drink caffeine. I am now taking lamotrigine 125mg twice daily and I am ok with coffee. I might be having to take lacosomide if my dizziness is too much to cope with and stops me from doing things ie. my dancing class.

Thanks for telling me that I have to be careful with caffeine.

I don't have a problem with alcohol but I was never a big drinker anyway. Some of my friends always used to ask me why I wasn't drinking alcohol and I got sick of telling them. I would usually say that I have health problems. I shouldn't have to say that. Why can't people just think that you don't want to drink alcohol. I think most people think you are only enjoying the night out if you are having drinking alcohol. I did once say that I wasn't very well and the lady left it at that. I could not go into details as she asked me when I was in a pub. Now, though, my friends know that I have epilepsy and understand.

Neurologists - don't get me started on those doctors. I hate the previous one I consulted. I have a new neurologist.

I hope everyone is ok.

Debbie

 

[Debbie53]

Anti Epileptic Drugs and Alcohol

Were you talking to angelstars? She said she hadn't tried much alcohol at all. And I was never a big drinker - in moderation but high quality what I did drink. I don't think either of those things drives you to worship the great porcelain god or black out. But it can provoke a seizure or make you feel really tipsy because of the meds.

I think the question for people with epilepsy is mostly can they drink at ALL? Some say they can drink in moderation and not provoke a seizure, but when on these incredbly powerful meds it does other stuff as well. Is there such a thing as moderation when on AED's???

Hi Endless,
I used to take sodium valproate. I took it from 1983 to 2015. I could drink as much as I liked. Sodium valproate is well known to be a sedative so I think that will be why. Well, as I was not a big drinker it was about 5 half pints of lager when I was in my early 20's. I am now in my early 50's. As I am getting older it is only 3 lagers. Now I am taking lamotrigine and don't know how much alcohol to take. I do have 2 alcohol drinks and take lemonade either side - so three lemonades.

I think I will be able to stick with that and no more which is no great hardship for me. I do enjoy one small port every other week. I hate Port and lemonade.

Debbie