I have had a persistent migraine aura for nine months. My vision is constantly flickering, I get flashes and sparks of light, shadows in my vision, after images, and visual snow. Bright light, sun light, computer screens, and fluorescent lights make it worse, as does stress and tiredness. Not only that but I’m barely managing to cope psychologically with my symptoms, and I’m only getting by now because I happen to be given Nortriptyline for migraine prevention, though it hasn’t actually done anything for my symptoms. At this point I feel like medications are just making me worse.
My issue is my neurologist. I go as far as I can to communicate my concerns and priorities for treatment. Every time though I am ignored by my doctor. All she cares about is if the medication works, and if it doesn’t, then here is the next one to try with no input from me.
One example: I was given Topiramate by my referring doctor which worked initially, but as I increased the dosage it made me to exhausted and drowsy to function. After my second medication didn’t work (propranolol which gave me headaches and made things worse), I asked about trying a time release version of Topiramate that supposedly has less side effects, so that I could try increasing the dosage of the medication that I know does work partially. I had also asked about getting assessed for a sleep study. I have had a history of chronic dark circles under my eyes, fatigue in the mornings after plenty of sleep, and insomnia in the past, as well as new episode of sleep paralyses recently. I was told the time release of Topiramate wasn’t worth it because it cost too much, and wasn’t as effective so she wasn’t going to consider it, and completely ignored my request to look into a sleep study.
This is just one example of my struggle to communicate with my neurologist. Now I know that there are medications that have been proven to be helpful for persistent auras. I have had only two moderate to severe headaches in the last year. Pain is not my issue. I need something that will address the aura. At this point I am fed up with my neurologist. I called my primary doctor’s office and asked for a referral to a neurology department in a different hospital network, one that has a headache specialist I am interested in seeing. Instead they called me and told me to go see my neurologist in network, and refused to give me a referral.
Is there a way to see a specialist without a referral from a primary care doctor? Or a way to make my neurologist follow the treatments that are recommended for persistent migraine auras?