Chiari Online Support Group

Self advocate

what can anyone suggest to me for my PCP for the pain, light and noise sensitivity. My doc has already said I am my own best advocate because I am vocal with him and my wife helps me when I go so I do not forget anything. What should I ask my doc for currently, all I am taking for all symptoms is between 2000 to 5000 mg of ibuprofen a day. There are days when that doesn't even feel like enough. I know taking that much isn't good for me. I have tried exercise, mediation, doing nothing and all work in small ways for a short time but nothing really releases the pain. Should I try different exercises....or what...

Has PT helped anyone or a chiropractor?

Also the other major is insomnia, like now it is almost 230 am and I still can't sleep even though I have been in bed since 12. Its bad b/c I also have severe obstructive sleep apnea and usually (in the past) when I put my CPAP mask on I could fall asleep, not in and out if sleep comes at all.

Please somebody anybody tips suggestions advice

Sorry for what you are going through. I am not sure if this is what you are looking for but I will try, my doctor has put me on Topamax for my severe headaches and it has helped it also has a sleepy affect on me so I take it at night and it helps me get to sleep as well. For pain I heat up corn bags in the microwave to put on my neck, arm, leg ect. The corn bags are made with feed corn you can buy them on Etsy.com or at most craft fairs. I sew so I made my own the corn you can purchase at the feed store. Hope you feel better soon.

your doc is absolutely right you have to be your own advocate!! i too am on topamax for the headaches but you have to watch the one big down side is hand numbness which is something they dont want you to have...but even on that i been having headaches that just will not go away for the past 2 weeks they do tend to make you sleepy tho' esp in the beginning of getting use to taking them.As for pain have you trtied flexeril,methocarbonal? or how about a combination of muscle relaxer & pain killers he being the doctor should be able to set you up with two that would work well together.

as for your other questions if you go to a chiropractor i caution you this a dangerous thought.......as for PT well, i will just say they caused me more harm then good...either way you go use caution and keep EVERYONE away from your neck!

My PCP is also making adjustments to my medication, since I’m not getting enough relief from what I’m taking. So, I don’t have any suggestions for that yet. As far as PT goes, it didn’t help me at all. I do see a Chiropractor, but you have to be VERY careful with this. I go to an Atlas Orthogonal Chiropractor, which is the only kind someone with Chiari should go to. It is a much more gentle form of chiropractic care. They don’t “crack” or “pop” anything. It does give me some pain relief, but it is only temporary. I hope thos helps and you feel better soon:)

Crystal