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seizures anyone with SS?

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Old 01-31-2010, 05:12 PM   #1
Join Date: Apr 2009
Location: BC, Canada
Posts: 71
surreygal HB User
seizures anyone with SS?

Hi there:
For almost this past year now I've been experiencing seizures. I have brain lesions that were originally misdiagnosed as Multiple Sclerosis as I off and on experience all the symptoms. The brain lesions haven't changed all that much, but this year I've begun having seizures. I don't lose consciousness during them, and my neurologist describes them as temporal lobe seizures. Last week I seemed to have perhaps had a grand mal seizure in my sleep. I awoke for work last Monday morning feeling awful, called in sick thinking perhaps I was sick with a virus, then rolled over and went back to sleep. Except for occassional trips to urinate, (and I awoke in a puddle, as it seems my bladder let go at one point while I was sleeping, too), I kept returning to sleep for the next 24 hours. I wasn't interested in food at all, and didn't eat anything.
I've never had anything like that happen to me before. Even with a stomach virus, I usually eat something over a 24 hour period, but not this time.
I awoke Tuesday morning and didn't feel great either, so I missed work that day too. I saw my GP and she noticed that my tongue was all ripped up, like I'd been chewing on it in my sleep. She told me not to work for the rest of the week, and told me I should call my neurologist. I did that when I returned home, and my neuro said I'd described what sounded like a grand mal seizure, and that this meant there was no longer any doubt, I had to surrender my driver's license now. Canadian law states drivers must be at least 6 months seizure free in order to legally drive. My neuro started me on an anti-seizure medication called Lamictal, and so far I'm only taking 1/2 pill at bedtime. I increase that to 1/2 pill morning and night as of next Wednesday, so I hope I don't feel snowed during the day at work when I start that. I plan to return to work tomorrow.
I am feeling so frustrated by all this. My neurologist has no idea why I'm having seizures. She isn't convinced the cause is the Sjogren's Syndrome, but then she admits to not being an expert about SS. Frankly, I'm having a hard time finding a doctor who is. Even my rheumatologist doesn't know much about SS. I've read that about 2 percent of the SS population experience seizures. I'm seeking kindred spirits to hopefully relate to me what their symptoms and experiences are. Are you able to drive? Are you on medication? Do you suffer side effects, if so? Does the neurologist caring for you know why you are having seizures? Does any type of trauma cause seizures in you? The reason I ask this last question is that I wonder if my recent dental trauma set this ball rolling. I spat out a crown a little over a week ago, and last Saturday (8 days ago) my dentist told me that unfortunately the tooth would need to be extracted, as so little of it remained, that it couldn't be saved. He had to cut away a bit of my jaw bone too, and then sutured up the hole and sent me on my way. I took it easy for the balance of the day, and dosed with Ibuprofen to reduce swelling. The next morning I felt really good; no pain or swelling. I was careful when eating but otherwise thought the worst of it was behind me. I headed out in the sunshine for a bike ride, something always guaranteed to elevate my spirits. So, I was surprised when about 1 hour into my ride I had the first seizure I'd had in about 4 months. I was disappointed by this event, as I had hoped the seizures had resolved themselves and were now in my past. I didn't feel very well for the rest of the day, and then it was sometime during that night that I must have started for feel really lousy because I awoke feeling horrible.
Has anyone out there had any type of similar experience? I am hoping to learn what I can expect. I'm only 47, and this is very frustrating.
Anyhow, I welcome hearing from you. Take care.

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