I was wondering if anyone could tell me any non medical tx tht work like certain exercise, certain ways to have ur head, anything really tht helps relieve the pain. Also any types of meds tht seem to help you a lot. I am on Percocet n vicodin and some days it doesn’t touch the pain. Plus I’ve noticed I’m building a tolerance quickly to them which is odd bc before last year I didn’t take any meds, I started with OTC migraine and tht didn’t touch it after so long. Then when my dr found out I truly needed pain meds he gave me those. As my family Dr he’s admitted to not knowing much about Chiari at all so any suggestions to talk with the neurosurgeon this afternoon about would b greatly appreciated, thank you, you all r awesome! I was hesitant bout joining but I’m ssssoooo glad I did, feel better already knowing uall our out there!
You should definitely ask the neurosurgeon how to hold your head right, ask if any kind of traction might help. For some people this can be of great relief but for others (like me) it doesn't really help at all. I think in my case it has to do with the size of my tonsils and my odontoid is retroflexed. You may not have these issues but the only way to know is have the NS show you the MRI and explain to you what's going on. As far as meds, it's a tricky thing and different for everybody but I was surprised to find that Motrin helps. I also have to take Adderall for the fatigue and Xanax for sleeping and anxiety attacks.
Diane,
Are you on any anti- seizure Rx, such as LYRICA ( also works for neuropathy pain- feet & hands feel bad
Tingling as if their asleep or electrical) ? Also if your head is in pain due to the chiari causing ANY
spinal fluid blockage; are you on DIAMOX ?
But pain pills are still used with these .
And yes the jerking, twitching, sometime big & sometimes alittle, can all be contributed to Chiari.
Good luck today
Renee
Thank u for ur reply. No I’m not on any anti seizure meds. My twitching has just gotten real bad the last few months. Maybe when I go to nl he will put me on something for tht, I hope. The pain meds do help sometimes but if I overdue it, nothing helps. My ns said yesterday my flow was fine so no surgery is needed but he also told my twitching ect is not related to Chiari n it will not get worse than it is, the Chiari, n I have a hard time believing tht since mine has gotten worse n so has many of yours.
Diane, when I was diagnosed for the first time with chiari,it was by my ns in san francisco. But I also have
Elhers Danlos, which also causes the pain, burning & trembling in hands. In my case the trembling started & speech stuttering,etc. when my migraines & neck pains started even thou my spinal flow had not yet been restricted. I hope you get the answers you need from your doc.
I hope this is helpful
Renee