Migraine and Pain Meds

I am at a sort of crossroads in my treatment. My story is somewhat common, episodic migraines starting in my 20s, gradually increased in frequency, severity and endurance. About 6-7yrs ago the pain became daily & non-stop, except when I took the Fioricet with codeine, prescribed by my primary care MD. Have tried many, many preventatives w/o any help. Since then, I have seen 1 migraine specialist, who was killed in an auto accident 3yrs ago, and a neurologist. The 2 MDs worked together on several patients. Basically after about 3years of trying everything they threw at me and the pain continued to get worse. I had to apply & was approved for disability.

Remember by the time I got to both MDs, my pain was constant & the Fioricet was no longer helping. Along with other meds, they were also giving me different pain meds. Then they mutually decided that they had tried all they knew to try & referred me to Pain Management. She was great and after trials of different things, the only thing that had improved my quality of life were the pain meds. So 3 monthes ago, the neurologist decided that I am addicted to my narcotics and all I need for my migraines were Topamax & Botox. Both of which I have tried on numerous occasions without sucess. Speaking with my pain MD, she is not sold completely on his plan. She says there is a difference from addiction to medical need not her exact words but basically the same meaning. With her, I have gone from counting my pills to see how many I can take until my next appt to a month Rx lasting me close to 2 monthes. At first I thought my panic was maybe I am an addict, then realizing the ONLY thing that has helped me was the pain med.

Since I have tried topamax, having to stop & start 6-8 times due to side effects, the last one & the scariest was hallucinations, visual & auditory. So no more topamax. I got one series of Botox injections about 6 wks ago, no change in pain, except now I have bodyaches, hot & cold, flu like symptoms. So now what???? My pain MD agreed to supervise gradually stopping the pain med, but says that I am not ready for that right now. Have a lot of personal & family issues to deal with. She told me after getting completely off them, my pain maybe gone or my pain could not change. When I asked then what? She said I will need to develop coping skills to deal with the pain. I am terrified!!!! I don’t want to be on the pain meds forever, but at least I had improved some quality of life VS high levels of pain that I have to learn to “just deal with it”! Anybody with advice, similiar situation, anything……..

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