Do any of you experience better or worse twitching or myoclonic jerking under certain conditions? In other words, is it worse when you are tired, cold, dehydrated, ???? Or is it worse when you are herxing?
I have some days when it is terrible and other days when I barely notice it. I can't tell if I am getting better.
Also, have any of you ever experience your jaw closing involuntarily during sleep? I will be relaxing and trying to drift off to sleep and my jaw will just automoatically shut by itself and I sometimes bite my tongue!
Am I the only one who has this weird issue? I have a feeling that is not due to Lyme?? Is it hyperreflexia and maybe a neuro issue? UGH!
Posted by Annie C (Member # 14) on :
Yes I too have myoclonic jerks and with a certin med it rarely happens.
Posted by luke339 (Member # 8580) on :
As far as i know its when i am tired it gets worse, or when i adjust my back, twitches will start up. My back for some reason cracks a lot more when i move it now.
Its for sure a neuro symptom which could or could not be caused by Lyme. What did your western blot look like?
Posted by Aniek (Member # 5374) on :
Yeah, it's worse for me when I'm stressed, tired, and after exercise.
I haven't done aerobic exercise in over a year because I had to leave a step class and then had my worst myoclonic attack ever. I often get small jerks or my fingers tap when I'm in the resting pose at the end of a yoga class.
I first got myoclonus when I took Effexor to control pain. I stopped taking it and it went away. Then it started during Lyme treatment, I think on Ketek, and stopped again. It restarted a few months ago and has increased since adding in Flagyl.
I don't get jaw, but I do get jerks when I try to fall asleep. Often that will be my leg moving.
It's also semi-controllable. I won't have any jerks while driving, but then they might start while I'm stopped at a red light. They stop as soon as my foot goes on the gas. I read a story years ago about a surgeon with Tourrette's, his tics would stop during surgery.
Posted by DolphinLady (Member # 6275) on :
The myoclonus I experienced happened only as I was falling asleep. Fortunately, it has resolved with treatment.
Perhaps keeping a journal might help you see some sort of pattern. Just a thought.
Posted by Jill E. (Member # 9121) on :
Mine started about two years into Lyme/coinfection treatment after I did a weird Chinese energy medicine treatment that has made me sick ever since. My myoclonic jerks and twitches are worse when I relax, as I'm falling asleep or they even wake me up during sleep.
Yes, I've had the jaw thing twice and it scared me to death, I thought I was going to bite off my tongue.
I've read Lyme symptom descriptions and the myoclonic jerks are often listed as symptoms. But my LLMD didn't think it was with me, maybe because I had never had it before.
I saw a neurologist who has no knowledge of Lyme and kept saying it must be a reaction to my medication, but I had never had those symptoms with this medication.
I do find that doing mental relaxation techniques will calm things down for a very short period of time.
Posted by tabbytamer (Member # 3159) on :
I've had the jaw thing.
Doc had me get just a regular mouth guard from the sporting goods store and follow directions on the package to shape it to my mouth ($6.00)
It really helped when going through that. If I felt it coming on, I could slip it in sometimes fast enough.
Then always wore it at night.
The problem popped up when I was attempting to take an intense college course and was inbetween abx. It was a new symptom for me but resolved with the next abx regimen so I'm pretty sure it was Lyme related for me.
Posted by [email protected] (Member # 8111) on :
At first my myoclonus was constant - jerking (mostly of legs but other parts of body too) every 4-6 seconds. After about 6 months of treatment it went to much less - mostly whole body jerks at suddne light intensity changes or sudden sounds.
I was also very sound sensitive. Couldn't stand to tv on or even the sound of my hubby brushing his teeth at the other end of the house. Certain sound would spark a round of myoclonus esp in my legs.
Now I only have jerking at sounds or light changes if I'm very tired. Sometimes I have to leave the room if the tv's on.