posted
Hubby tried many seizure meds over the years. He was allergic to dilantin (hives). Very few of the others he tried helped -- depakote, keppra, neurontin and I know there were a couple of others I can't remember right now.
For years I gave hubby IV Ativan thru a picc line and he has been on oral ativan the rest of the time. He had gotten the dose down to 1/2 mg per day from his usual dose of 4 mg per day a couple of years ago, but then he crashed and of course the first thing the ER wants to do to stop his shaking and dystonia is give him a couple of milligrams of ativan. Anyway he had gotten the dose back down to 2.5 mg daily recently with plans to decrease it further until he crashed again.
Hubby did try topamax at a low dose for about 6 months sometime in the last couple of years, but felt that he didn't need it any more.
IV glutathione was useful when hubby was at his worst and had untreated bartonella. He has never tried the newer oral forms. I think that would be worth a try. But it could get expensive.
We tried many of the herbs and supplements that are suggested for epilepsy and I honestly don't think that any of them really helped him that much.
He has been on taurine for years -- that also is good for the heart. That would be something cheap to try. Really don't know if it would help or not. Hubby takes 500 mg 3 times per day.
Hubby almost always had one of his seizure-like spells between 11 pm and 1 am. It would wake us both from sleep. We always felt like there was probably a liver toxicity issue involved, but just could not find anything that would stop that symptom.
The first time it stopped was when he got to the high doses of cryptolepis back in 2007 -- 1 tablespoon 3 times per day. Yes that is 3 teaspoons 3 times per day. That was the first time in years that hubby slept thru the night without waking up shaking with dry heaves. Only lasted for a couple of weeks that time because the supply of the herb ran out for about 6 months.
And then when hubby thought his bart treatment was done and went after lyme with IV rocephin after the first dose his nightly spells stopped and have not returned. It has been about 15 months.
The IV ropcephin he did in 2003 the first time actually caused seizure like spells -- I had to stop every dose 1 or 2 times to give IV ativan.
I think the 2nd time he did the rocephin it acted as an anti inflammatory drug because the bart had been knocked down enough to not be a problem.
Hope this info helps a little.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Good stuff Few questions
1) Did he not go after Lyme and Bart at same time? 2) What ended up working for bart? 3) Ever try flexerill?
I'm experiencing EXACTLY what your husband is/was going through. Bartonella in the brain and when you hit it... boom... scary seizure-like episodes with disorientation and confusion. Also tremors and major twitching.
At night (as I'm falling asleep) it's all amplified. My Doc explained this to me but I'm not sure how to translate it to paper. Nevertheless it seems to involve the frontal lobe and an "opening/ralaxing" taking place as one falls asleep.
I too take Ativan 1mg at night and it helps. I potentially may need another dose during the day or at night (seeing as to how my Bart herxes are bad at night).
I also know Borrelia is behind the scenes too because I haven't treated it in awhile and my old Lyme symptoms are back (emotional, joint pain, so forth)
What a mess I've gotten in. If I can stop the nerves from overfiring during die off... I can [probably proceed in killing bugs. Until then it's a juggling act that I'm losing.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thanks for posting this. I was having little seizures around this time of night for a while. Not sure if I've had them within the last year.
Posts: 2903 | From AZ | Registered: Feb 2006
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