A living nightmare
Last updated: June 2023
I'm a 44 yr old woman and if you can believe it, I've had migraines as far back as when I was 5 years old. My paternal grandmother suffered severe migraines and living in a multigenerational family, it was often her who stayed up all night with me, crying because my head felt like it was going to explode. She held my hair back while I threw up on a very regular basis and respected the dark room, no noise, no smell, no movement environment I needed.
I was never migraine free. I had a migraine every day of my life, and it really wasn't much of a life. I did what I could though to make the best of the lousy hand I was dealt. There wasn't treatment at that time...no triptans...just aspirin (which tore up my stomach) or Tylenol. They were somewhat bearable until I got to my mid 20's. Minimum pain scale 5/10 every day...and that was a good day. I tried seeking medical assistance only to be put on antidepressants---I will admit it is pretty depressing to feel that bad all the time. I lost friends and relationships because of it. I never felt well enough to go do anything.
I kept a migraine diary, knew all my triggers, tried alternate therapies...to no avail. A neurologist tried me on Topamax which I could not tolerate. Then I was prescribed Verapamil. It was so-so. These migraines scared the living out of me because they became an extremely neurological process, meaning I would weaken on the left side of my whole body. I wouldn't be able to see out of my left eye, my speech was slurred, and I really couldn't walk because my left leg didn't understand I wanted it to move. I FINALLY, just within the last few years got so fed up, I demanded my doctor help me. I did not care what I had to do, the pain was so bad. ER visits weekly and living in a vicodin haze.
Being a Social Security Disability examiner, I actually qualified for disability benefits. I think that would have already sent my depressed state down the toilet. I was referred to another neurologist who had great success with Botox, but of course my insurance wouldn't pay for that. So a potential treatment was just out of my reach and I was frustrated. I was also sent for a lumbar puncture and was diagnosed with pseudotumor cerebri. I was begging to get LP's for the short lived pain relief. Try telling people who already think "it's all in your head" that you have a "fake brain tumor". I just got stupid stares. Then word from my neurologist came that the Botox would be covered. I got my hopes up way higher than I should have, but considering I have chronic intractable migraines, I needed that hope. Amazingly, they worked!! Now I'm not 100% migraine free, but 2-3 a month is a heck of a lot better than every day.
Treatment options are a personal decision, so I would never push Botox on anyone. My experience was favorable and I'm finally able to live a much happier life.
In the past year, has insurance made it difficult to get your migraine treatment?