Hello. I am a long time follower and this website has helped me cope with chronic complex migraines.
I am hoping for advice or some perspective. I’ve had migraines since age 11 and I have been chronic for several years. I had an upsetting day yesterday when I went to a neurology center to finally receive botox after waiting 6 months. I went with a referral from my current neurologist. Instead, I had a consult and they said I hadn’t tried enough and/or doubted that I had taken the medications that I had tried over the last 16 years correctly. I’m supposed to go back in 5 weeks with a migraine diary and to let them know if the one NSAID I hadn’t tried worked (seriously?). They even admitted it might help the pain, but that it would do nothing for the complex symptoms that have wrecked my daily life.
I guess I have been lucky with doctors because this is the first time I have felt insulted and unsafe. I’m wondering if I should write a letter to my neurologist to let her know how badly I was treated and to see if she can recommend another center. Unfortunately, the next closest center is 5 hours away by train. As I sometimes can’t see clearly and I can get too dizzy to sit up straight, I don’t currently drive. I am also wondering if it would be worth paying out of pocket for a round of Botox just to see if it works. This center wants me to try some horrible meds again and I just can’t put myself through that.
My current neuro thinks that Botox is my safest and probably last option. Previous treatments either haven’t been effective or have caused a bad reaction. I won’t bore you with everything I have tried, but the following made me very nervous to be treated my them: The milder Triptans stopped working years ago (they weren’t really that effective, my symptoms were just less severe) and I’m too afraid to play around with other stronger ones after I had difficulty swallowing for several hours after a dose of Relpax. Despite knowing this, they were insisting that I had to try several more Triptans again before they would give me Botox. It is like they were surprised that Triptans didn’t work for everyone.
The office told me outdated information regarding my stroke risk and the doctor didn’t believe that perfume can make one worse or that weather could be my main trigger. They accused me of not exercising enough. I’m 130lb at 5 feet 6 inches and I do work out as much as I can with a chronic condition. Other than the migraines, I am quite healthy. “Do you break a sweat when you work out?” “Have you tried running every morning?” “Maybe you should try doing more yoga.” I felt victim blamed and that they were telling me it is my fault that I’m sick.
Maybe my neuro can talk to them, but I almost don’t want to go back. How have you dealt with difficult doctors?