Question about epilepsy remission.

[TorekO]

Hello, I dont know if its even right for me to be here, I had epilepsy when I was 10 years old and had seizures until I was 11 and switched meds then they stoped, I stoped taking meds when I was 17 and had been seizure free and med free, I am 25 years old now.

I came to this forum to ask about if I should avoid alcohol and all the triggering that can cause seizure. My doctor said I should avoid smoking,drinking,lack of sleep and avoid being exposed to sun too much, I followed that rule strictly when I was taking meds and 5 years after I been in remission, but then I started to take few alcohol sips here and there, until it came to the point I wasted myself twice in 2 weddings which one was at my sister and my friends brother wedding. I would like to know if its okey to drink in moderation or should I just avoid it fully.

Hope I am not barging into the wrong forum for such questions if I do I am sorry.

 

[sassi]

I would caution with moderation as moderation can turn into more than moderation. I also don't know how you are with stopping once you start. To be honest, I would stay away from it altogether but I would be scared they could come back and if you haven't had them in a while you could go status or tonic. I guess its all on if it makes you feel like it could bring one on? For me, it never really did but now I question it. I would be concerned just in case. If you can, also talk with your doctor to get his/her feel on it as well.

 

[masterjen]

From what I understand about childhood epilepsy, some can be outgrown. Other times it seems to have been "outgrown" but the propensity toward seizures is still there; ie. the seizure threshold is much lower than what it is for the average person. That's most likely why you have been recommended to avoid the general triggers that you mention. You are fortunate enough to have been seizure free for 8 years; why take the risk and drink???

 

[TorekO]

masterjen I totally agreee its why I came here, I know I been extremely lucky, I almost died from my first neurologist puting me on tegretol and yet I let myself go in the last 2 years, which I was still strict on drinking just these 2 weddings, which I regret deeply since it wasn't fun and I took the risk.

Sassi I am not in love with alcohol but is it alright to drink lets say a bottle of beer per month or a toast of wine for birthday? that's the kind of moderation I was speaking of or is that a risk aswell if it is I don't mind not taking it at all.
I dont want to visit my neurologist that I didn't saw for 8 years and ask her that, kind of embarrassing

Thanks for replying btw

 

[sassi]

I'm not sure I would risk it at all. I'm coming from when I went out and had a couple of beers (read, three or so) and I came home and had a seizure and what happened after that is one of the scariest things in my life. It's one of the things I'll never forget or forgive myself for. I could've avoided it by abstaining but I decided I wanted to and decided that I could and I did it and I ended up in the ER. I contacted that friend afterward and she confirmed I had had three beers but it reacted really badly with me and my meds and the seizures.

I also had less sleep that week but at the same time would it have been different if I had gotten the right amount of sleep? I don't know and I can't take it back and try it again just for that sake. I'm scared to do it again. I would hate to put my family through that again (I probably scared a few years off my dad's life) or myself.

In the end, it's really up to you but just really think. How much is it worth to you? Is it worth risking another seizure? Maybe to have them again after not having them for 8 years? I'm guessing you're driving right now? Is that worth a risk as well? There's so much freedom in not having seizures that I would hate for you to have that one or two and then end up having one and be right back where you started.

Really, really, really think hard about this because you could end up back in square one again. What are the pros and what are the cons? Easiest solution to this: write up a list of the pros and the cons and choose the decision that has the least amount of cons because I can guarantee you it'll make you happier in the long run. Short-term pleasures will never account for your long-term happiness.

 

[TorekO]

Sassi that's really scary, I thank you from the bottom of my heart though, I am gonna avoid alcohol all together now, I don't even need the list to write since I don't think alcohol is worth risking for. Specially my mother would have a big trouble coping with it coming back, I know I would hate myself it if did come back because of it and I been an idiot to even do what I did but I got too carefree and comforted with the healthy life that I thought doing it wouldn't harm me now, don't know what I been thinking.

btw I came to seek the answer now because the place I work at had epileptic kid have a seizure and one of the stuff told me how you cant have alcohol at all, which made me remember how alcohol can cause it, I am way too optimistic and too easy going that I never took it that serious I guess or I just forgot about it after so many years being free from it, that I started to tell to myself this wont harm me but it could in reality.

 

[sassi]

You're welcome and it's ha hard decision, to be completely honest. I had a hard time looking my dad in the eyes after that one because it was brought on by alcohol and lack of sleep and me generally not being careful. I don't want that for anyone.

It's easy to forget! Blissful, really. I'm so glad you've been eight years free, it's such an accomplishment! You're one of those success stories that I hope to be sometime and I'm glad for you. I think it's really awesome. You sound like you're doing great! Keep doing great and keep being seizure free! It's a gift, don't ever forget that and cherish it with everything you've got! I'm rooting for you!