canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi,
As I've been having seizure-like episodes (partial seizures?), which are frequent and debilitating, I'm wondering whether we could describe our episodes, and what we believe the triggers are, if any, and what we're doing that's successfully minimizing the number we have and their severity?
I just had another one, so I'm wiped! and I'll post again later with a description, etc. of mine.
With best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I feel for you. I know just what a seizure feels like.
I use to get the absolute worse seizures. When I went on the 'msg-free diet' & reduced my glutamate levels they came to a complete stop...for 1 & 1/2 years anyways.
Then something happened. When I found out I had LD I went to my first LLMD I told her about some of my symptoms & the seizures that I had. I told her I can't take any meds because all meds have 'free glutamate'. She didn't know what I was talking about. She talked me into taking cholestyramine & amoxicillin. I only took small dosages for a couple of days & I noticed my seizures coming back. That's been since oct 23rd last year & I'm still getting them today. I had 2 today. Their not nearly as severve as they use to be but they are still seizures. Their also in a different location in my head. My bad ones that I use to get were in the center of my head. Now their on my forehead around my 3rd eye.
What now triggers my seizures? Well...lets take today for example. The keets were very active today. My right lymp node under my chin was hurting & swollen. My neck hurt. My tail bone hurt where I was bitten. My palm was burning & stinging on my left hand. On my right hand it was all my knuckles were hurting. Both my calves were killing me & my heels. Fatigue...this alone would set me up for a seizure. Most times when I have a seizure it's not just one but at least a few. So what I'm saying is when the keets are active I'm in trouble.
Oh...I have my good days. Usually 2 good days then a few bad ones. I should have posted in that roller coaster thread but I didn't.
I already follow a somewhat low glutamate diet, but it's not helping this time, because the problem this time are the keets.
There is one thing that stops my seizures though. That is as long as I see the aura(warning). I put my zapper on my vagus nerve & it stops me from having a seizure. Every once in awhile I'll feel some internal tingling in my torso & if I don't pay attention to it by not using my zapper I will have a seizure. But I'm learning. My zapper saved me today as a matter of fact.
I would now like to direct your attention that when your feeling bad there is a very special song that I think you will like. It has helped countless people who were even suicidal. It's called 'My Safe Harbor". It was written & sung by Peter Love. Peter is a singer, song writter, composer, producer from Chicago.
Peter came to me about his seizures. He told me he had seizures for over 10 yrs, seen countless doctors & spent thousands of dollars & took all kinds of meds & only got worse. I'm proud to say Peter came to me & I stopped his seizures in about a weeks time. In his appreciation he has dedicated 'My Safe Harbor'to me. Here's the link...enjoy.
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