I really feel for you folks who deal with nerve pain. Too often, there just isn't a whole lot that can be done. Have you ever consulted with a Pain Mangement Specialist? They have a few more tricks up their sleeves that other specialists do in this area. Have you tried any of the anti-depressant or anti-seizure meds like elavil or topamax? Some people really do have decent results with those classes of drugs where nerve pain is concerned.
Since you found your way here, have you done a google search on your condition? With a quick search, I pulled up several links about CPS, many sites of which have what appear to be good information on recognizing your pain triggers, avoiding them, and finally, different ways of dealing with the pain.
I had hypothalamic lacunar stroke on 01/09/09 with subsequent thalamic pain syndrome on my right side arm/hand & leg/foot/toes. Constant tingling/burning/tightness/numbness & cold my entire right side of body. After stroke, my doctor immediately put me on 75 mg Plavix same day. After putting up with syndrome for 4 weeks, I went to my neurologist Thursday, 02/05/09 & told him the pain was really getting to me. He prescribed Lyrica 75 mg twice a day. He told me it would relive the tingling/burning, but not the tightness/numbness. He was right on! I've been on it for 3 days now and the tingling/burning sensations are just about unnoticeable now.
Hope this helps someone.
I am glad you have found some relief:) I hope you will stay with us as part of our community, we can always use more knowledge and we all need support.
Please keep us updated.
I am 61 yr old lady, I had an AVM resection in February 2008, deep brain. The surgeon said the thalamus was "insulted" in the procedure. All together, I had four surgeries in 2008 related to the original AVM resection. Install a shunt in March, removal of shunt in August and craniplasty to replace the bone flap in September. In April 2008 I started experiencing debilitating headaches and nausea. The cranioplasty allowed my head to adjust to atmospheric pressure and the horrible headach went away! The nause and "sick feeling" has been with me all along and it is really difficult to live with. My doctors say that I suffer from Thalamic Pain Syndrome resulting from the original surgery. Medications help with the alodenia, phantom pains and restless leg syndrome. Nothing seems to help with the overall malise "sick sick feeling". Have other CPS patiens reported nausea as an issue? It is like I am always sea sick or like I have food poisioning. Extensive GI work shows that nothing is wrong with my GI system. The sensations all come from brain injury at the thalamus resulting from the surgery. Presently I take Lamictal, Lyrica, Gabapinten, Siboxone, and doxipin. Any ideas? Any recommendations of clinics or doctors who specialize in treating this? Thank you for any suggestions.