I have been diagnosed with complex migraine for over 25 years. No neuro has ever kept me under their care since no medication has ever worked. About 13 years ago my GP prescribed Cymbalta just to see if it worked. It worked pretty well and stopped the 4 migraines a week. Unfortunately, 12 years ago I moved. My new GP refused to prescribe the Cymbalta. Then the health system that I used refused to acknowledge or treat the migraines. They insisted I had an undetermined neuromuscular disorder. But they couldn't treat without a diagnosis. The metro hospital that I went to agreed, and totally missed the migraine portion even though they have a headache clinic.
Two years ago I began having stroke-like symptoms. After 8 specialists, including a neurologist who pronounced my situation "not neurologic in nature" and refused to read the original diagonising neuro's report because "it's not even your name" (it was in my maiden name, because I was a child at the time of original diagnosis). She told my GP I needed to see a psychiatrist. When I refused, the GP stopped helping.
My symptoms got so bad that they were having trouble fitting my glasses. So the optomotrist sent me to opthomology. Fortunately he had seen a case like mine in his residency and forwarded me to a larger city hospital. They said, "It's your migraines. We can't really help you. Get your GP to refer you to a neurologist." They would not see me in their neurology dept because "It's too far and there's nothing we can really do."
My new GP in my new health system referred me to their neurology dept. The neuro said "chronic migraine" and put me on meds. She sent me on my way without even a follow-up appointment. When my prescription, which clearly wasn't working, almost had run out I scheduled another appointment.
Turns out I was supposed to have blood work. Well no one told me. I was also supposed to have an infusion treatment LAST YEAR. No one scheduled it or told me.
At the appointment she doubled the dose of the med that wasn't working. I tried upping it, but began swaying on my feet and falling frequently ( 3 times in 2 days). I am now using the packet that was supposed to wean me up to wean down. NO, I didn't tell the doctor. I already told her it didn't work and she STILL didn't take me off it.
She told me that "I thought if you stopped drinking soda your migraines would go away. All of that aritificial sugar." I explained I don't drink diet and haven't been drinking soda for all 25+ years, but still have the headaches. She insists it's something that I am eating.
She also prescribed an infusion treatment; I received one day of the treatment and was not able to complete it. That's OK, it made me really sick and GAVE me a migraine. (Apparently, it contained steriods. Steriods always give me a headache.) She wants to give me Botox, but looks like that will be thousands out of pocket. No one believes me when I say this, but her office visit cost me over $200 after insurance and my one day of infusion was close to $400, so I believe that Botox will cost a bunch.
She insists that I am completely disabled. That I should not work. That I should not drive. That none of her patients do. And while I am home, don't look at a computer, a TV, or read a book. And I should not do any of the manual labor that I do on a regular basis becausethat can't be good, even though it's part of our life. She doesn't know how I've "managed" to live the life that I have with this disorder. But now that life has to stop, because I'm disabled. Even though I could do all of these things before I walked into her office that day.
Apparently I didn't get this message the first time she saw me. So this time she said it about 5 times. Now I have been physically injured so badly that the specialist looked at me and said, "My God, how are you not screaming in pain?" To which I responded, "It won't help will it? And right now, takes too much oxygen." (Migrainers get this statement I am sure!) Not only was I not screaming, I was walking, which is apparently not supposed to be possible at that point. My point being, I wasn't disabled even with a disabling leg injury, so how can I just accept her statement?
Is this seriously the standard of care for chronic migraine? [I realize some of you have daily headaches. As of today, that is not the case for me. I have 5-6 other migraine symptoms daily, and a slight headache by the end of the day about 4 days a week. This usually goes away if I just lay down.] According to her, you can't drive on any of the meds or on the Botox. I messaged a friend who gets the Botox; she is confused because she takes it so she can continue working! Or do I need a second opinion on my current treatment options?
Thanks for listening and for any feeback you can provide.
Woke later today, but I am scared stiff yet again, going to see a friend of mine for an hour. It is an hour exactly, its like an appointment, I like seeing her though, my head hurts again this morning. But not as bad as before I'd rather stay in bed, today than get up!
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