Seizures

[saadbell]

I was dx for at least over 10 years, sorry for not having all the details, but I will explain. When I first was dx, it was fast, there was no question, from my first symptoms till my dx was maybe three months. This is when beta was just coming out on the market and was put on the lottery and was picked and did this for almost two years. I moved at this time and got a new doctor and he didn’t really care about it so I thought quit this beta and of course being a pretend doctor for myself I stopped the beta.

Than about 5 years ago I started to have spells, just a strange sensation, and of course these little spells escalated, during this spell I would just stare into space, still aware of my surroundings which I later found out is called a petit mal seizure, than this progressed till I was having partial (focal) seizures the complex kind which means I had no memory of it. I knew I was in trouble when my mother and I were doing our daily walk and I had one and she was calling my name and I didn't respond, but was smacking my lips. This is when I stopped going to my doctor who I have had for over 10 years and went and got a new doctor.

I had told my old doctor about these spells but he said they were nothing and dismissed the whole thing. My new doctor sent me straight to the nuero and that is when I found out I was having seizures. Sometimes I would have up to 10 a day, and my depression changed also, it went on a whole new frightening level. They did the MRI with contrast and the nuero stated I had a large lesion on the brain and several small ones, but he is concerned over this large one. I thought he would check my spin, but it seems that as soon as he seen this large lesion that is all he thinks about.

So I am now on gabapentin twice a day three times a day, at first I only had one seizure, but last night I had a seizure, and today I had a few more, also I wet myself last night in bed, this whole thing is so upsetting. My question is has anybody else had seizures, I know you can have seizures with MS but I read that it was really a rare symptom. The whole thing makes me very depressed, I am back on beta, but this time I am having a strange rash, oh the good times keep rolling.

So that is my story, and I hope I don't have to go on more seizure medication. Oh yea I am not suppose to drive, shower or bath alone, please are you kidding me, it feels like I woke up in hell. Sorry for the vent, but looking for some feedback.

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[onlyairfare]

I have MS and an abnormal EEG, found because I had seizures following brain surgery, which is not uncommon with brain surgery.

I was put on Anti-Epileptic Drugs (AED's) to prevent future siezures, and they have been successful - no more seizures since that post-op period. I have even decreased my medications from 3 AED's at fairly high doses post op, to one medication in a low dose now. I'm on Keppra and it doesn't cause me much trouble, so I stay on it even though it has been years since I had that brain surgery and a seizure. Mainly because if I have another seizure then I have to go back to 6 months with no driving.

During that time I was in the hospital, and on a couple post-op visits, I saw a neurologist who specialized in seizures, and a neurologist who specialized in brain tumors, as well as my neurosurgeon. They told me that seizures are more common than we realize in the general population (2 - 3%, maybe higher), and that they are twice as frequent in MS patients, like 5 - 6%.

Most states have driving laws that require you not to drive for some period after a seizure - 6 - 12 months is common. If you remain seizure free, you can return to driving. In my state, it was 6 months, so I did not drive for 6 months. For the first 3 months, I was so sick from the brain surgery that I couldn't drive anyway. After that, my son was 15 - 16 and had just gotten his learner's permit and then drivers license, so he drove me everywhere and was happy to do it.

They tell you the stuff about showering and swimming alone because theoretically if you had a seizure and were unconscious, you could drown.

All those neurologist I saw said most of the time seizures can be controlled, but sometimes it takes adjusting the dosage and using different meds or combinations of medications.

I hope your doctors can help you find the right medications so that you do not have so much trouble with seizures. It is a hard thing to deal with, especially on top of the MS. One of those new MS drugs is one I can't take because they say it might increase seizures. Oh well, there are others around now, and there are new ones coming along too.

Good luck!

[saadbell]

Thank you

Thank you so much for responding. I am just really upset about the seizures, I had three yesterday, and I had to call the neruo, who again stated I should not drive, so my daughter drove me there for more meds. He just upped the gap to 900 mg twice, three times a day. I have so many pills and things I have to inject, insulin, and none of it makes me feel happy. I think if you have to inject something like beta throw in something that makes you happy, so you want to run and take your meds. Just a thought, lol.

I have noticed that this time my depression has changed to a new kind of raw level, never never have I ever felt this bad, and it scares me. I have had two MRI's in less than two months, as soon as I had the first one; the neruo wanted another one, wonderful. Oh yea my veins are shot so finding veins on me is hard so I usually get stuck in the wrist, which feels like heaven. NOT. I have to say that I used to be fat but now I have lost 75 pounds and now I look thin and sickkkk. lol

I never thought people get two or more incurable illness, stupid me thought if you have one than you won't get anymore like that, well I was proven wrong. Seriously if I wanted I could sell used needles to make some extra money, of course I won't, but when I get mad and depressed I think you know you could go into business. lol I have to makes jokes or I will just cry all the time.

I was reading about brain tumors and all my symptoms are right there, so is the lesion like a brain tumor or is it different? I will go see my neuro soon, he called me yesterday and talked to me and of course the driving came up, I am not the best patient. Sorry for going on but it is nice to vent to someone who understands this madness.

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