I’ve been diagnosed with Chiari as well as a syrinx. I’m still waiting for my consultation with the neurosurgeon and it seems my symptoms keep getting worse every week.
This past week I’ve had nearly constant fasciculations in my leg near my knee. It’s driving me crazy! It’s also impacting my sleep. I’ve had them in various places sporadically before only lasting at most a couple of hours but this has been almost non-stop for the past week. They’ve also increased in frequency elsewhere in my body.
I saw my GP today and he feels it’s all related to Chiari/syrinx and said I just have to bare it until my appointment with a neurosurgeon. He’s up my nerve pain meds to see if it helps. Does anyone else experience them or experienced it in the past and is there anything you find/found that helps/ed stop them?
Oh my goodness! I thought no one else - but me - had “fasciculation issues.” I’ve had them all my life. Some of them lasting for months. One behind my ear lasted for 3 years! I just assumed it all had to do with being athletic. Before Chiaris, I was a marathon champion - trained super hard, ate a pristine diet, etc. AND… lived with non-stop fasciculations all over.
But, even long before I was into athletics, I was being tormented with fasciculations - now that I think about!!! When I was about eight or nine - one of my calf muscles was twitching and wiggling non-stop for hours. I showed my mom and dad the involuntary movement. My dad said something like, “I think you have worms inside you.” Wow. I believed that silliness for years. It wasn’t actually until the dawn of the internet that I was able to do some research on fasciculations - and found out that the main causes were either: a reaction to a certain medication/chemical -or- some variety of permanent central nervous system damage. Back then, I was clueless about the nerve damage. So, I assumed fasciculations were caused by stuff I ate. Except - I could NEVER get them to stop - even with the most wholesome diet!
Guess what?!?! Good news! I have got them to stop!!! I mean, I have had the Chiari decompression surgery in 2012. But, even after the decompression surgery, I still had the fasciculations jusst as bad as ever. Hmmmm.
The fasciculations were FINALLY put to rest when I started taking a low dose of Amitriptyline post-surgery for continuing nerve pain. Yay! I can never take more than 3-8 mg of Amitrip on a regular basis because 1) I have permanent liver damage from contracting hepatitis when working overseas… and 2) the side-effect of amitriptyline is extreme hunger pains/cravings. If I keep my dose under 8 mg. I can avoid the side effects. Yet - that amount is enough to stop the wiggles and squiggles of fasciculations. YAAAYYYY! Every now and then, if I have too much coffee, sweets, Pepsi - the fasciculations can get triggered, though. If I am desperate, I can smother any fasciculation temporarily with a dose of Lorazapam. (I have an As-Needed-for excessive-nerve-pain prescription of Lorazapam) I am on the low-dose of Amitriptyline because the Chiaris has left me with non-stop nerve pain. Even after the surgery. But, the stuff works real well for me. Stops the pain AND the wiggles!