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Old 01-20-2003, 05:14 AM   #1
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Relaxeed HB User
Unhappy Really confused. Anyone had anything similar?

I've had 4 grande mal seizures in the past. The first when I was 19, the last 3 years ago when I was 25. I've never had any warning of them. I've been for 2 eeg and mri brain scan's during that time. On both occasions, the results came back as negative. They said there was a slight unusual activity but nothing much. Therefore the seizures were put down to stress, lack of sleep, too much partying etc. 3 out of the 4 were after a night of drinking. I was told that drinking can trigger certain impulses in the brain that could cause a fit.

Even though I wasn't diagnosed, I take 400mg phenotyin daily for the past 3 years. I asked for this as it seemed that taking it could only help me.

Anyway, that is my background.

Now my confusion.

At the moment I feel like I felt after I'd had my previous seizures. I can hardly keep my eyes open. I ache everywhere. Feel waves of something flowing through my bosy. No energy. Feel 'out of it'. Totally spaced out. I've felt like this for about 3 weeks now. It goes for a couple of days and then comes back again. I had this once before about 2 years ago. It lasted about 5-6 weeks then. I've had all blood tests etc so know it is not viral or anything. According to my blood, I am fighting fit. Which I am not.

I can't help but think it is connected somewhat to maybe my brain or something. The doctor is stuck and cannot really help me anymore.

I'm planning to go back to a specialist again. Has anyone had anything similar or heard of any thing like this? I don't know what to do and it is really getting me down.

Would taking phenotyin affect me in any way?

Any help or ideas from anyone would be most appreciated.


 
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Old 01-20-2003, 07:21 AM   #2
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MntnHeathr HB User
Talking

I have been diagnosed with Epilepsy and on Dilantin for ten years. I have had the experiences you are talking about, and they are frightening, I know!
The first time I had it I thought I was going to die. I was actually alone in my room thinking about my child and my husband, crying asking God not to let me die. This is a scary thing, but I am still here. I have continued periodically to experience these episodes, but nothing ever happens. I too went for testing, and the doctor could not understand what I was talking about let alone try to figure it out what was causing it.
Do you know what I thought it was? An inner ear infection. I had severe vertigo, and every time I raised my head above a parallel position the dizziness got worse. My docotor said that dizziness, side to side was normal, but vertigo, falling backward was not.
Don't be frightened, but do seek your docotor's opinion. He may have some insight where mine did not.

 
Old 01-20-2003, 08:26 AM   #3
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lazoo HB User
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Welcome to the E board both of you. MntnHeathr - my husband has the same vertigo problem that you describe. He does not have seizures. But, is having a very hard time finding out what the problem is. What have they said is causing your dizziness? This has been going on sometime. He had an orthopedic tell him it was from a compressed disk in his neck that is pinching an artery. Today they are sending him to a neurologist. Any help would be greatly appreciated. lazoo

 
Old 01-20-2003, 08:37 AM   #4
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Relaxeed - What you describe sounds similar to what my daughter was going through before she was diagnosed and right after. She is 8, has partial seizures that make her feel like she is going to throw up. Those are her seizures. However, before and after diagnosis, she also had chronic stomach pain, low energy and was just not with it. After she had her status seizure, this was even more pronounced. I started feeding her a little bit every hour. Meat, low carb veggies, nuts and seeds, water to drink only. It took several months but she gradually started getting better and better and then to the point she was practically back to normal except for the partial seizures that clustered once a month. She is now on Keppra and doing fine as far as the stomach pain and seizures. Don't know if this could help you, but maybe it's worth a try. Good luck! lazoo

 
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