My Doctor is saying it's okay

My doctors have said it’s okay to drink as long as its not too much. They tell me it’s okay to drink coffee and to work out.
What does everyone think about this???
At first I did go out and party with friends and drink, but found myself blacking out after two in a half drinks and then the next day having a mild seizure. Now since I have been having so many seizures I have quit everything…drinking, coffee, and working out. I have just been going to work and then coming home and going to bed. I find if I do anything that gets heart going I feel as if I’m going to have a seizure and probably would if I didn’t have adavan.
Their saying it’s okay to pretty much do anything except smoking.

Hi Rosie
My doctor said it was ok to drink and it might bring my blood pressure down, but me being me i do overdo it sometimes but hey ho
I had stopped smoking but have started again cause i am so bored sitting at home as not been back to work since bleed in Oct. really pisses me off that i’ve strated again, not good for filling in forms but i shall try to give up - again!

I think much of it depends on your particular AVM (size, complexity, etc). As always ask your neurologist. Mine said that for me, drinking is okay, coffee is okay, jogging is okay, but no strenuous exercise (working out).

Years ago, all exercise used to be prohibited, until patients started gaining weight and suffering from higher blood pressure. So light exercise became generally acceptable.

As always, ask your neurologist.

hi rosie, I was an alcoholic, among other things, for about 5 years and I did not have problems with my avm. my second bout with the avm happened 2 week before college graduation. Dr suspect to much mental and physical strain. It is my believe that that coffee, alcohol etc… did not effect my avm


When i have a drink it effects my headaches otherwise I would have a drink sometimes. As far as the coffee I gave it up when my seizures got worse. I do drink coke which has caffine in it but coffee has a higher amount in one cup (145mg) than a can of soda (45mg). I felt a difference with my seizures. Even now with my seizures being controlled w/meds if I have coffee I feel funny. It is probably because I am getting so much caffine at one time. My doctors also told me drinking coffee was OK.

I can’t drink with my blood pressure meds- it would knock me out. Otherwise I think it’d be ok.

so, lee ann when you say it makes you feel funny…what do you mean by that? I’m pretty sure I know what you mean, but can you put it into your own words?

There’s difference in us all- I myself mix Red Bull, 180, or Monster…taking 4g of Keppra and 120mg of Phenobarbital- I HAVE TO WAKE UP to go to work!! I feel ‘funny’ sometimes, but I just pay no mind to it- it’s just going to get you worked up.

There was one time I didn’t ‘wake up’, my reaction time was so SLOOOOW, I hit a tree (Mom’s car =O ). Thank God it was NOT a person. I took a two hour nap, when I woke up I thought I was ABLE to drive. I will scan pictures if anybody wants to see the damage…


yeah scan the pics Regis

Give me time as it has been busy over here…

Hey Rosie,
I’ve only just been allowed to drink since March this year - about 4 months after the AVM. But then I was only allowed 1 light beer or a glass of wine every now and again. Since I’ve been back to the doctor she’s upped it to 2 light beers or glasses of wine every now and again. I know it’s because I’m still on the Dylantin and she doesn’t want to risk me having a seizure (bye bye drivers liscence for a long time).
My doctor also said no V (an energy drink that I love) and no stimulants of any kind - including coffee.
I’m also not allowed to play AFL or touch ever again (believe me, that devastates me), or run for now. I am allowed to do light exercise to get myself back into shape. I think everyone’s doctor tells them different things but if you’re really worried you should talk to your neurologist - they’ll tell you for sure.


Don’t worry about the liscence for now. I too was on Dylantin, make sure you take care of your GUMS, as Dylantin makes them swell (Cousin is a DMD, she specializes in the gums).

It’s a price I had to pay too… I came a long way- 2 years after my hemorrhage, I was going to clubs, DRINKING (while still underage). It’s a setback, but we all most give up something, I guess that’s the way it goes… Now, 11 years later, I party like a rockstar- Grey Goose W/Red Bull, almost a BOTTLE of wine, between 48 and 100 OUNCES of beer (beer tasting) at concerts… I don’t drink everyday, only when I’m out…

There’s light at the end of the tunnel, trust me…


Regis, I already have my liscence back - my doc just doesn’t want me to drink in case I have a seizure - then it will be bye bye liscence.

I’m taking really good care of my gums, flossing almost every day but the only side effect I’ve had from the dylantin is the extra hair growth! And believe me, that’s enough. Although that’s gone away now too.

I’m not really that bothered by the whole no drinking thing - a few years back I too partied like a rock star but before the AVM I didn’t drink that much anyway… and it’s good to wake up without hangovers

i took them to mean “go a head… there going to see me with an avm again.” so i light my cigarette and get some one to open my Guinesse and smile.
youve got to do what makes you feel better.
if that is “be good” have at it.