Mid-30’s female, started getting migraines for the first time about 5 years ago. At first they were once a month, menstrual cycle related. Maxalt was prescribed by regular doctor and that worked fine for years.
About a year ago, migraines became more frequent, every 2-3 weeks. Started seeing neurologist 3 months ago when they were happening every 2 weeks. Neurologist put me on Nortriptylene (started at 10 mg, now up to 30 mg), advised about MOH (I had daily headaches and took advil or tylenol probably 4-5 days a week for maybe a year–never knew it was bad–but haven’t done that in 3 months). For a few weeks migraines were worse (1 a week) and then for maybe 6 weeks they were better (1 every three weeks.) Then for a few weeks I got 1 a week.
Then for the last few weeks it has been hell. I have had a migraine almost every day, or if not a full-blown migraine, nausea and the sensation of a vise squeezing my head all day–basically everything except blinding pain–just miserable discomfort. It has been debilitating to the point all I do is lie around in the dark with a cold rag on my head hoping it doesn’t get worse. Going to work is torture. I have missed work for the worst ones and others, I just sit like a zombie with the lights down and can barely get anything done because my head is in a fog. Or I walk around all day with a bag of ice and a cold rag on my head.
My neurologist has tried lots of things (I last saw her 10 days ago) but nothing seems to be helping. When I went in the last time, she put me on a week-long course of prednisone because I had a continuous migraine for over a week that wasn’t resolving except for a few hours at a time. That made everything so much better for the first few days (it was shocking not to have my head hurt at all) but by the 3rd day as it tapered off, I started getting aura and having mild migraines start up. She put me on magnesium and riboflavin. We talked about not taking anything for the pain (Tylenol, Advil, Triptans) more than 2-3 times per week, which is why I’ve tried so hard not to take anything unless I’m in unbearable pain.
Now it’s been 4 days of migraines of some degree after coming off the prednisone and it’s not resolving. I took Maxalt for a severe one 2 days ago, used ice/rest the day before and the day after, and had to take Maxalt/Zofran this morning for another severe one, then again 6 hours later at the doctor’s advise when it wouldn’t resolve. If it’s not better in the next 30 minutes, she wants us to go in to the ER.
I feel like my life is being destroyed. I can’t function. I have a migraine or headache or severe tension every day. I never go outside anymore because sunlight is so awful for me. We can’t go out to eat because of the car ride. I leave for work before the sun comes up so I can be safely inside in time, but then I still have to drive home with the sun out. All I do is hide in the dark with a cold rag on my head.
I am afraid of taking pain meds or triptans because I don’t want to get MOH (or maybe I already have it) but then steroids aren’t safe to take for a long time, and apparently it’s dangerous to have a migraine for days on end too. I don’t know what else to do. I will go see the doctor again on Monday, and I like her, but I am discouraged nothing is helping. I had been afraid to try the Topomax drug because of the side effects of depression and other not great ones, but then this is unbearable too.
I don’t know what to do.