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Jill77
new and a bit frustrated
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I am new here and my boyfriend has been having seizures for a bout 3 years. I have been with him every time he has had them. He started having them when he decided he was going to stop drinking, for years he had been quite the binge drinker, so when we went to the ER they said it was probably alcohol withdrawal and gave him dialntin, and he was sent on his way. later that mornign he had another one and we went back to ER. The nuerologist he went to did all the tests and everything looked ok. He got put on Lamictal, and was doing good. BUT everytime he drinks if it's a few beer's a coupl weeks later he will have seizuers, they are always in his sleep or semi awake, always grand mal's. He starts by doing this swallowing thing over and over, then he goes into a grand mal. He then opens his eyes and tries to get up and walk around, but he is still out of it. Then he will sit around for a minute, and start to come to, then he will sleep it off for a bit.
Two weekends ago hanging out with our friends he snuck 2 shots of jaeger and had about four beers. This last Sunday he had 4 seizures. Before if he drinks 4 or 5 beers he would have maybe one, but be ok after a day or 2. The thing that bothers me and I know there have been studies, but no one seems to believe me that I think alcohol has something to do with it, I am sure that stress at work and lack of sleep are a part too, but I think when he drinks alcohol it is a major part of his seizuers. They are always on the weekend too, luckily i have always been there. it's just a weird pattern to me. And whenever i tell a doctor about it they brush it off like "no, that doesn't have anything to do with it" well, you know what? I wish i had been documenting it all this time so i can prove it does. Seizures are a scary thing to watch and to see your loved one go through it is so hard.
Recent Comments on this Discussion
Thanks for the comment on the "sleep walking after a grand mal".
My husband stopped drinking before we ever met. He too had found himself in the ER ( a couple of times) after partying then having a seizure. He used to share my glass of wine or half a beer but even that lately has been too much and he will have a nocturnal grand mal. These guys seem to have has similar paths. My husband has a lot of stress so I do my best to not add to that stress.
I knew from the beginning that my husband had epilepsy and that it was going to be part of our lives. It is not a matter of "needing a different bf" Its a matter of letting your bf know how much you care for him. We love our men and have to stay strong for them.
My husband had to make the decision to stop drinking on his own and I am glad that he did. I hope your bf will understand how important you are and that drinking is hurting him.
Yeah, my boyfriend is the type of person that doesn't know what moderation is. But now I believe he realizes that drinking can not even be an option.
Thank you for your input, it is nice to know someone else understands exactly what I am going through.
Alcohol can lower an individual's seizure theshold and so can not
getting enough sleep. Seizure theshold the resistance to having a
seizure. Ask yourself chica do you really think this dude is good
enough for you? Everytime he drives he is endangering innocent
people and your life too.
What you need is a different
boy friend in my opinion or to ask yourself why you ended up with this
particular male in the first place. He knows he drinks too much,
he know he has seizures and he know he's making you miserable and
doesn't have the courage to go to rehab and do something about it.
Oh
I get it when you in love you don't think with your brain. There
is something you guys can do. I was in love before I know to some
extent how it makes you do foolish things before I decided falling in
love wasn't for me.
You could
get the media telling them what you told us and that other bit too
about how the neurologists and the doctors neglected your mate's
condition when he has something that might kill him if it isn't treated
giving the name of the doctor who never returns your calls, naming
names of the hospital the person who sent you to that doctor and that
you've had no luck getting him treated.
Emphasizing that
epilepsy is life a threatening condition in more ways than one.
Explaining someone could go into status epilepticus, suffocate, hit
their head while attempting to urinate or carry out daily chores.
Then you get to watch while the doctor tries to explain or the
ER staff gets in trouble for sending your boy friend to an incompetent
neurologist and watch as the hospital and the clinic scape goats the
people you are having problems with to avoid taking
responsibility.
This is how the western world
works. You'll never get the fat cats but you can get a few people
dishonored who are in your way. The remainder will either avoid
you since you present a threat or help you because you were willing to
stand up for your boy friend. Either way you folks win because if
medical decides to do nothing to remedy this then it has to deal with
public outrage.
They can ignore two people but not a
thousand or a million. It will be interesting to see how they try
to worm their way out of this one. The press is going to love
this one. Neglect, abuse of power, incompetence apathy all the
makings of a great story.
It will encourage more people to
question their treatment and maybe talk to the media if they feel they
have been treated badly and from there it will blow up in the
neurologist's face pretty much. I just love it when authority
figures who don't take their responsibility seriously get what
they deserve, don't you?
Actually he is good enough for me, he is my soulmate, and if I have to deal with this situation, then I will. I think he gets it this time, and he will stop. He doesn't drive, he does realize even though he has seizures in his sleep it could be possible to have one while he's awake. And he is not going to drive until he is cleared by doctor, if he can get into one.
Maybe that is what I need to do about this western neurolgy, it is sooo frustrating, how can they just turn their heads on someone who has a brain problem, it makes me sick.
Fatigue has a lot to do with seizures. All anti seizures med's say you should NOT consume alcohol with them. Please tell your bf to find another dr. that he trusts. This is nothing to play around with. Combining meds and alcohol is dangerous! Our Neuro says that the time going asleep and waking up is the most active time for some epileptics. Yes, it IS scary to see your loved one go through seizures. Go to a neuro who specializes in epilepsy!
Oh we have been trying fo rthe past couple of years. The neurologist he was referred to the very first time, I swear was a part time doctor, her office was open from 10 am to 2 pm. it was impossible to get ahold of her and when you left messages she didn't return calls. He was going to a chiropracter that was more than willing to refer him to a good neuro. BUT those "great" neurologists would not take Ryan because in "western neurology doctors don't take other doctors patients" ??????? Ryan even tried calling the docotrs himself. Is that the most ridiculous thing you have ever heard. It's hard to believe that someone who is suffering from seizures, and needs help can be denied by a neurologist even if that patient doesn't like or trust the doctor they were referred to by the hospital ER. So after this last episode the ER referred him to a different doctor and when he called, they didn't take his insurance. SOOO he called his family doctor and they referred him to another doctor, which Ryan has been trying to get in contact with their office, and their phones and computers have been down so he gets to try tomorrow. Some luck he has been having. damn!
Hi,
I thought I'd help you out a bit, and while you may/may not like this tell you that it sounds like your bf might be a bit like me. First, I will tell you I used to drink a hell of a lot in university, but I stopped shortly after graduating when I was 23 & switching doctors -- finding a decent doctor might not be a bad idea when you can. Until then, here's a bit of input for you.
Basically, all through university I stayed up until between 2 & 4am most nights, usually drinking or studying. Some nights I'd remember my meds, some nights I wouldn't...it didn't matter. I'd wake up just in time for classes, go to them, have fun, etc...typical student life. Thing is, I did that for 4 years. In the summers I worked a midnight shift 11pm-7am. So life was either a party, or I was awake at night for work. The only time I ever had seizures was during exams. So all through university, maybe 5 seizures...5 in 4 years.
Then, after grad. my old neuro put me on Lamictal and told me it was "the wonder drug"...I had 7 seizures alone that summer. Basically looked at her & said ummm...why!! Give me some answers or I might as well go back to vodka & malibu. The woman looked at me clueless & sent me to my doctor in Toronto that I still see.
This is where answers came in - it's all about consistency - lead a consistent life. Wake up at the same time, go to bed at the same time, take meds at the same time, same amount of caffeine in a day (that triggers seizures)...he told me to knock off the drinking, but for your bf if a doctor lets him, make it consistent - maybe 1 beer as he gets home from work...you see what I'm getting at. Consistency in life & moderation. Get him to understand that some how.
Apparently, I didn't have many seizures in university because while the lifestyle sucked (party life, basically), it was always consistent. Then, after grad. my system when into shock - 9-5 job, living at home for awhile...totally new lifestyle & totally new meds. My doctor in TO was like umm no wonder why! Get back into consistency, just do it the right way. I still have seizures when I'm really stressed, it's just become about managing triggers, etc.
~Erin/GG
Yeah, I have noticed consistency is definitely what helps. He used to be a huge partier then gradually it got less, a year after we moved in together, he decided he wanted to chill out and not drink for a while. I think that was the trigger, but I know it would have happened sooner or later. He did his share of crazy drinking and drugs, but i think him working around paint for the past 9 years has been the cause of it all. I noticed this saturday morning he was doing what i call "seizure swallow" it's like he's swallowing or gulping over and over, usually it starts like that and he goes into a grand mal. it was about 630 am and he did his routine of getting up, looking out the window, then going to the bathroom, when i asked if he was ok he said yeah, and got in bed. Of coarse i made him take his pill. Then Saturday night i made him set his alarm so he could take his pill the same time he does during the week. When I asked him if he remembered getting up he said he didn't, so I know the seizure swallow is probably a partial seizure, i don't know. But he FINALLY got into a new neurologist and they did a new EEG hopefully they will have something, so we don't have to keep wondering. We will find out on Wednesday.
But you are so right, you have to be responsible about managing the triggers, being consistent.
I would love to have a beer now but I'm proof postive if I drink I'd be just like your BF instant sez automatic. Maybe it just something that sets them off I don't know. I was mostly a beer drinker for years but never a real hard drinker. Now I have gave up booze all the way. It;s just not worth it knowing what the outcome will be for me. He may just have to face facts that he may have to give up drinking. Good luck.........x
no alcohol.......he needs plenty of rest.......enough to eat......correct meds.......little or no stress......sounds pretty boring i know....but eventually you get tired of going to the er and having them pump dilantin into your veins...slow or fast going in, it burns like a mother $$$$$$.....good luck with everything and god bless