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korenat

Seizure before, during or after sleep or suddenly being sleepy!

My problem with seizures starting occuring about 2003. I was on the phone when I got an overwhelming sensation in my head and then felt it through out my body and the next thing I know the paramedics were there. I dont remember anything in between. That was the first event I saw a neurologist who told me it was all in my head. Two years later I had another episode and no one was around. So I had no idea what had happend and left it alone. but, in 2005 my fiance and I were home and I suddenly got tired quicky and layed down on the couch  and my left arm went numb I sat straight up and got that overwhelming sensation again. I told him and this time I tried to stand up and the I got horrible pain and when I awoke there were paramedics and I was being taken to the er. I was put on Dilantin at that point.

Previously I had complained about sleeping issues that no one took seriously either!

I continued taking this medication and everything was fine but started having break through seizures. I was then sent to another neurologist who payed not attention to my concerns and ended up having to find another one. I was sent to another one in Seattle. Who never did any tests whats so ever. I saw him last month on the 13th and asked him why the seizures only happen before during after or make me suddenly sleepy and then they occur at no other time do they happen. He gave me no explanation and ran no tests. He said that i hadnt had seizures in 9 months see you in a year. the next morning i had a seizure and that night i started having one and basically i came to 3 days later in the hospital still disoriented went back to sleep. I dont remember getting home. and its not till now did i find out that i had had somwhere between 7-9 seizures that day. 

I switched neurologists who one the first visit ordered an MRI with and with out contrast and an EEG. I also found out that I have partial seizures that in the old MRI that the previous neuros saw. it shows the abnomality on the right side of my brain that none of them did anything about.

why are they seizures only happening this way? I have a CPAP machine now also which seems to help when a seizure wants to come on. It forces air in and the seizure makes me numb for about 10-20 seconds and then stops not pain or anything but it is still freaking me out. No one in my family has epilepsy and I have never had anything to cause this problem unless it was from the complaints of sleep that i made that no one did anything about. Someone please help me. 

I dont know how to feel emotionally anymore! and im sick of people saying get over it! If you can help please help. I will be greatful.

To everyone else who has seizures, Im there with you and I hope and pray that none of you have any episodes.  Thank you for sharing your information not only to get help but to help other.

Comments

Re: Seizure before, during or after sleep or suddenly...

Mine (tonic-clonic) started a few months after a head injury in 2001 (months after I turned 16 :( ). The first time I woke up in my parents' van on the way to the hospital, the second time a month later I woke up very confused early in the morning with my dad next to my bed. I had seven seizures that day, spent the next night and day in the hospital on IV anticonvulsants. For the first several years, mine were always associated with sleep cycle stuff. They've since gotten worse. Sleep-related seizures are not uncommon; there are a lot of things that change in your brain chemistry and electrical activity during sleep time. If you haven't been to a sleep clinic, that could provide some useful info too.

There are better (more effective and less side effects) meds out there
than Dilantin, and if you're still having seizures these should be
considered. Not every drug works well for everybody, but with so many
there's got to be something that can control your seizures. Seems like the worst case with your meds would be that you have to be on more than one. Changing meds is no picnic, but once you find a good one you can stick with it for years. Talk to your doc about that.

Make sure you see a doctor who listens to your concerns, and be more vocal than normal about them (you know what they say about the squeaky wheel...). It's your health, your life and docs sometimes forget that. Consider seeing a neurologist's PA if you can't find a neuro that you like. In my 8 years of dealing with this I've gotten the best attention from a PA. He/she will be working for the MD usually, so consults are regular and possible but a PA seems to generally pay attention better. Female doctors also seem to have a better bedside manner. Make sure you have all your past records with you if you switch, or as much as you can get.

No need to just have to get over it. You may have to face the fact that this could be your health concern for the rest of your life. You may have to slog through months of trying different medications and doctors. This has become a part of who you are, but just a part. Usually epilepsy comes out of nowhere, and I think a lot of people feel like they didn't do anything to deserve this kind of thing. Let your doctor know about how you're feeling. Keep calm as much as possible and remember that sometimes we are handed a set of circumstances that really bites. You may wish you'd never had this problem, and I think a lot of us do. But you learn that it still doesn't change the fact that you have an illness. Hopefully by now, 7 months later, you've found some peace with the issue. If not, be patient and realize that you will with time.