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Posted By : vitaka - 4/5/2016 10:18 AM
Hi all,

I've been getting Botox shots for nearly two years. In the beginning, they really seemed to decrease the severity of daily headaches and probably the frequency of full-blown migraines. I still had head pain most days but it wasn't as bad overall. This seems to have changed over the last six months and the Botox doesn't seem to be effective anymore. I just got a round of shots last week and my neuro gave me significantly more shots than normal, focusing on my neck and shoulder areas much more than normal because I had mentioned neck pain. Since then, that area has been extremely tight and painful and no amount of stretching seems to help.

I was wondering what other people's experiences with Botox have been like and if people have experienced long-term success. I'm not sure what my next option would be for a preventative medication if I stop the Botox.
30s F. Crohn's ileocolitis dx 2/06. Proctitis dx 10/12. Arthritis dx9/09. GERD dx1/13. Asthma dx4/13. Raynaud's. Chronic headaches/migraines. Chronic constipation.
Lyme IgM+ bands 23, 37, 41, 93 (finished ABX regimen 10/15).
No current IBD treatment (past: Remicade)
Botox regimen for migraines.

Posted By : LadyAislin33 - 4/12/2016 8:38 PM
Hi there!

I’ve had a similar issue with Botox. However, I found that Botox provided me with clarity instead of major pain relief. Over time, the effect lessened. An interesting side effect is that botox can act like a good strong cup of coffee. For me, that was almost better than pain relief since my mind has become so muddled from the pain.

There is another however. However, have you’ve ever heard of nerve decompression surgery? I live in the DC area and a couple of years ago, Georgetown had a program that if you got pain relief from Botox after three sessions, you could apply for the nerve decompression surgery. Dr. Ducic since then has formed his own practice focusing primarily on nerve decompression surgery. I’ve done it once, and it was amazing. Two days after he worked on the back of my head, I was able to do the dishes, write a final paper for a master class and I could feel my depression from the pain lift. My only regret is that we didn’t go aggressively enough.

I am currently fighting my insurance company for the remaining surgeries, but they are claiming it’s experimental. But I desperately want it.

I would be glad to answer any questions on botox or the surgery.

Good luck to you!

Michelle

Posted By : pocahauntis - 5/3/2016 8:04 AM
Botox only relieves some symptoms but does not fix the root cause of the problem. My headache specialist incorrectly told me I had "dystonia," (a muscle disorder) but actually I just had to work really hard at physical therapy to loosen my cervical tightness (some caused by fusion and some caused by years of incorrect posture). I have been spending decades tightening my jaw and had terrible posture. I finally, after 6 years of occipital headaches and shoulder pain, found a good physical therapist. She works on my C2, my ribs connected to the cervical joints, and gives me strengthening exercises. I'm still not out of the woods yet but I've gone 9 days without a headache now, when I was getting them every day. It's all about strengthening the correct muscles when you have this condition, learning how to sleep in a correct position, posture--it all fits together. It IS possible to get better. I wanted to write because I've spent many a night up with a headache reading forums but no one ever comes back with a solution. This won't help everyone with migraines but those who have cervical problems, it's worth a try. Sometimes physical therapists go deeper and try harder than doctors, who just throw pain medication and procedures at you. Believe me, I did the gamut, from stem cell replacement to accupunture to shots to rhistotomy. Good luck out there.

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