"I started having migraines 20 years ago; they always started in the back of my neck and worked their way to my forehead. I couldn't even get out of bed and this was back before all the migraine meds—you just had to suffer through them.
"I started seeing another neurologist and he recommended Botox (I couldn't take beta blockers because of my low blood pressure). So I started on the Botox injections about three years ago. I don't know the dosage but he injected them all over my head, my neck and my back—about 30 or 35 injections for each treatment. I had treatments every three months. It would wear off after this time and this was the shortest time I could wait until the next treatment.
After a year I had an episode where I couldn't move my neck at all. It was gradual; it started out as a crick in my neck and got worse. I had a lot of pain and went back to the neurologist. He said it would wear itself out and assumed Botox was the cause. This happened several times so I told him not to inject in a certain area of my neck.
This past March I said never again. I had the injections and we went to Hawaii on vacation a few weeks later. It was the holiday in hell. The third day my neck hurt so bad I was in bed for two days with a hot compress on my neck—if I wanted to look at anyone I had to turn my whole body. We went to urgent care and all I could get was a muscle relaxer. The rest of the vacation was shot. I couldn't do a thing the entire time we were there. It was my first trip to Hawaii—we had planned on it as an anniversary gift.
To this day I still have problems with my neck. I cannot put my chin on my left shoulder and I don't know how long this will continue. I have been taking this for years, in the same spot, the same muscles, and I am scared. What I am most scared of is this: what we don't know about Botox.
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It was given to me off-label and I don't know if it did any good. He thought my migraines stemmed from something muscular in my neck but from what I have read, Botox is not a treatment for migraine. I had CT Scans and MRIs before and since treatment and it was not a structural problem in my neck at first. But now I am worse: I have to deal not only with the migraines, but a chronic neck problem.
If you are thinking of taking Botox, I do not recommend it. You'd better educate yourself on your specific problem before you consider Botox as a treatment. You live and learn. It really bothers me that I didn't know enough about this toxic drug beforehand."