Migraines, doctors and work...
Last updated: February 2023
I have been luckier than most of this site. I didn't get migraines until I was 35. I had had one when I was around 12 but that was it. My mother and my sister struggled with them, and I thought they passed me up. Not so.
One day when I was 35 I got REALLY dizzy, so much so that I couldn't even stand up this went on for 2 weeks. On the 3 day I got a horrible migraine. I was still dizzy and vomited every time I sat up. Afer several days of this, I went to the doctor and they sent me to a Nuerologist who did numerous test on me. Nothing was found. They sent me home and set up an appt for another specialist. When I went to him, he found nothing either except that I was having a migraine headache. This headache lasted for 21 days!
After that episode I would have migraines more often than not. They would last anywhere between 5 to 11 days at a time with varying severity in a 24 hr period. I can't tell you how many doctors I went to. Some blew me off, some gave me pills that didn't work and when I came back they would tell me there was nothing they could do. At this point, I was having only a couple days off a month without a migraines.
I would listen to anyone that had a suggestion and then try that. I have no idea how much money I have spent on different remedies that didn't work. My personality changed and I was miserable most of the time.
For me, before I get my migraines, I start to yawn a lot. No doctor I dealt with believed me, nor would listen till I read something, while living in Arizona, about a Migraine center at the Mayo Clinic. No doctor had even told me about this place! So I went and they finally listened. They told me I had 2 different kinds of migraines and said I was a good canadiate for a study of Botox injections for migraine. I was set to go and then I moved.
I spent the next couple years trying to find someone again that would listen to me. I found one doctor that was convinced Topamax would work. Tried that for 3 months. After the first month, I told the doctor that the side effects were pretty bad. They told me to keep going and that they would wear off. They were helping my migraines, so I continued to use it but I lost 35 lbs in 3 months. This dropped me down to 102 lbs at 5'6". I went back to the doctor and told them I would no longer take it. Can you belive they didn't even say anything about the massive weightloss. Even my supervisor at work took me aside and was convinced I was anorexic!
I finally found a Doctor that told me I should go to a headache center in San Francisco at UCSF. It took a while to get the approvals and the appointment, but they came though and I went. By that time Botox had been approved. They started me on it and it seemed to work.
I finally found something that seemed to lessen my migraines and then when I do get them, they are more mild and can be relieve with Relpax. Now the unfortunate part is trying to get work to let me off to get the injections every 3 months. I'm a flight attendant and it can get complicated with trying to be in town for the appt and then have the next day off to recover from the migraine it triggers. If I'm not consistent with the injecitons, then the migraines come back with force. In fact, I missed my last appt because of work and as I type this I am on my 5th day of a migraine.
Today I was able to get up and move around more, so my migraine is at a 2. Unfortuately, my Relpax hasn't been working and I can't get my primary to give me anything because she doesn't want to screw up what the headache center is doing and I can't get the headache center to return my phone calls. It's maddening and isn't helping my migraines. I'm at a loss as what to do now. There are very few places that treat migraines with Botox in my area and in fact the next one is about 90 miles away at Stanford.
This is not an option as my insurance doesn't pay for it there. So for now I suffer until my next round of injections hopefully in July... if I can ever get my doctors office to call me back!
Are the family and friends you will be seeing this holiday season understanding about migraine?