Refractory Migraines Complicated by New Chronic Pain

My migraines were “formally” diagnosed in my mid-thirties, but I’ve had “headaches” since my early 20’s that we’re debilitating and likely migraines-undiagnosed. My migraines were controlled with preventative medication for the first 10 years or so whereas I rarely took “rescue” meds such as Maxalt. Then about 2yrs ago my migraines started to become “refractory”, almost DAILY and they would not respond to ANY medication at all! I tried almost every prescription RX available. Started Botox, and Ajovy. I was using so many Triptans (my “rescue” medication for my almost daily migraines that I ended up with “medication-over-use migraines!!) So not much improvement. My 2nd dose of Botox (which I receive every 3 months) I responded great! Literally no migraine for almost 3 months.

Increased pain

At this time, I started having increasing neck pain and left arm pain with weakness. So, to complicate things, I was also having to take narcotic pain medication for the neck and arm pain which also caused the medication over-use problem. Unfortunately, there was nothing else I could do. I had been going to the gym swimming and walking on the treadmill (at a 15% grade) for a few years, at least 3-4 days per week. I have always been healthy. I didn’t even have a need for a Primary Care Physician!

Struggling to stay on treatment

It has now been about 2 years, I am still receiving Botox, Emgality and I do not take any triptans except VERY rarely when I have already taken the Ubrelvy that I can take for migraine without getting rebound HA. I have now had a rotator cuff surgery and probably have Neurogenic Thoracic Outlet Syndrome that has taken all this time to get diagnosed but I have to wait to get “formal” testing and diagnosis out of state until I have recovered from rotator cuff surgery. My Neurologist/Headache Specialist will not give me any more Botox because I am on narcotic pain medication (that I have to take for the pain from surgery and numbness/pain of NTOS!!).

Frustrated with doctors

I am in so much pain and still having migraines almost daily. I am frustrated that my doctor does not understand I would LOVE to discontinue my pain medication if I could. I would LOVE to have my life back. I would like to be able to get back to the gym-it’s been months since I’ve been able to go! I am depressed and losing hope my life will ever be “normal” again. My loved ones are tired of listening and seeing me in pain and crying. I have a fairly strong faith in God but I’m losing sight of my God.