Iv developed a jerky head tremor. Iv entered a phase of trying to disregard every symptom. So many things are scary the 1st time they happen, but now I'm in sort of numb depressed state. Over 13 years Iv added to the original headache SO many more problems that no Dr is interested in or think important. Anyway now the latest is when I'm falling asleep I feel as if I am about to have a fit, some change in my head position seems to start it and stop it but can't work out what because so drowsy. I am only taking gabapentin.
I also started getting these before my decompression surgery. Only thing that seemed to help was Xanax. It scared me a lot but has seemed to get better since surgery.
Oh wow did you Heather? did you ever get an explanation about why? I am waiting for my second opinion appointment at another hospital. Current one's opinion is that my Tonsillar Ectopia is not Chiari. This has been based on one scan pic. And without ever meeting me. Iv seen 3 of his team, 1st said migraine, 2nd said medication overuse headache and anxiety.3rd said he didn't know, didn't have my notes or scan and advised me to see the consultant with my questions. I have an appointment back there n 4th May, letter stll says 1 of his team. So Iv asked for a referral to Liverpool a specialist center.
I went to Stanford ca and I was told it was due to spinal fluid blockage, and after my surgery it stopped so I think they were right. I had my surgery on jan 28,15. I have follow up mri and post op in may but so far haven’t had a tremor sense, I explained it as I felt my brain shaking in bottom of my head and any moment felt like I could start convulsing. It was scary and odd feeling so glad it seems to be behind me.