I've been having full-body seizures that have become longer and more painful over the weeks.
From my research, it looks a lot like grand mal seizure, but I thought grand mal seizures were linked to epilepsy. Reticular Reflex Myoclonus looks a lot like it to.
This is what happens: I'm walking or standing when suddenly, my right foot twists inwards, my full right leg bends inwards, my spine bends to the right and my full body is literally bent right, convulsing as if attracted by a giant magnet. Meanwhile, my right arm and my head are jerking in rapid spasms.
I stay stuck in the position for a while then everything is back to normal except for muscle pain and sometimes headaches.
I've done a search and some people complained about the same thing when taking Levaquin and Biaxin, precisely what I've been on for a few weeks (for Lyme + Bartonella).
Any update from those people would be helpful.
Thank you.
[ 06. March 2006, 04:46 PM: Message edited by: christelleny ]
Posted by hiker53 (Member # 6046) on :
I believe it is a form of myoclonus. I have similar type jerks, although not exactly as described. I took take seziure meds to help control them. Hiker
Posted by christelleny (Member # 6719) on :
Up. Some help, please.
Posted by christelleny (Member # 6719) on :
Thank you Hiker.
I'm wondering if it's degenerative in some way or is linked to brain damage. My brain was fine a year ago, but things like that really make you wonder...
I'm more concerned about underlaying causes and long-term consequences than control. As long as it's not dangerous, I don't want to get myself on yet another drug (of course, it could happen while driving, I didn't really think about that).
It always happens at the end of the day, when I'm more tired.
I think that I'm going down this wondering road again: what if it EVERYTHING wasn't Lyme and there's something else terribly wrong with me!?
Haven't we all done that, at some point?
Posted by lou (Member # 81) on :
Something terribly wrong? That describes late stage lyme very well.
Posted by kgg (Member # 5867) on :
Does your doc know this is happening? If not, you need to let them know. Yes, driving is a great concern. And you are right, seizures will occur more when we are tired or stressed.
Please let your doc know.
Karen
Posted by bettex99 (Member # 8109) on :
I know these very well. I have had them off and on for 18 years. Sometimes I have bent backwards so hard I have torn thigh muscles and had black eyes from the pressure. They started 5 months after my rash. First in my hands at night and my face would pull down in a grimace on one or both sides. I know when they are coming or building up when my abdomenal muscles will be rock hard and tight and my skin will burn. Hard to take a deep breath. They come out at night when I am trying to sleep or relax. I call then carp flopping. I flop about like a beached carp. when I first started on bicillin it was an exorcism for about 8 weeks. I felt like I was being turned inside out.They could last for hours. The next day I would be sore like I had been beaten with a bat. Not so much now, but I can bring them on with too much exercise or stress. If I am lymie, loud noises can start them. I have seen them called tetany spasms or seizures.
Bet
Posted by pattilynn (Member # 8065) on :
Most people who have true grand mal seizures are not conscious and aware of what is going on. They usually wake up afterwards and don't know what happened. Then there is a period afterwards where they are very sleepy (post-ictal).
If you are awake and aware then it's probably not a grand mal, but it's definitely something. I would get it checked out for sure.
Posted by Boomerang (Member # 7979) on :
Yes, Patti..that is correct. I've seen one grand mal seizure occur. It was a frightening, horrible thing to see. The person it happened to did not have a clue what had gone on. She was basically what I would all unconscious during the seizure.
A horrible horrible thing to see....
Posted by DolphinLady (Member # 6275) on :
I recently posted a reply on another thread regarding seizures.
I wrote that I felt these were happening to me in my sleep (nocturnal seizures?). Today, 3 years into abx treatment, I feel them coming on when I've over done it and "I'm more tired" (sound familiar?).
But it could very well have been myoclonus and not seizures. I never had this checked out by a doctor. And I did have one other myoclonus symptom before treatment that would always happen as I was falling asleep. I would jerk forward from my belly, my upper body stiff. It felt very jarring and unsettling. Needless to say, it would also wake me up completely.
It would only be one hard jerk at a time, but it could happen 3 times in one night. Once I started treatment this resolved, thankfully.
I'm also thankful that this hasn't happened as part of herxing. It may be what is happening in your case. Just a thought.
Posted by christelleny (Member # 6719) on :
Well, whatever it's called, my LLMD wants me to see a neurologist.
I'm soooo wary of neurologists. But my LLMD tells me she's a LL neurologist
Thank you all for your answers.
Posted by Marnie (Member # 773) on :
Block the sodium channel/increase GABA...usual treatment ie., Depakote.
But be aware of the potential downside. Know the side effects ahead of time.
Research "VPA alters fatty-acid metabolism, impairs beta-oxidation"
Or...go here to begin to understand why this is happening:
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