Managing Migraines: A Life Project
Last updated: June 2023
The earliest migraines that I can remember started in my early 20s when I started taking birth control pills. I had to stop those because I was having significant headaches. After that there were days of staying in the bed, with your head under a pillow, in a dark room, sometimes for three days and migraine medication at that time was Cafergot which caused significant nausea.
At the age of 27, immediately following the birth of my daughter, I found out that I had Hodgkin’s lymphoma. I had 3 surgeries & radiation therapy. Luckily because I was pregnant the tumor grew but did not spread to other areas so I did not have to have chemotherapy. This was important because it meant that I could possibly have another child. Which I did 5 years later. I don’t remember a whole lot about that time. So I can’t tell about headaches.
This did become significant in my migraine history. Because of my cancer history when I developed uterine fibroids the doctor elected to remove the uterus and ovaries instead of just doing a partial hysterectomy. This way my hormones were not at work to create havoc with my headaches.
I had a little bit better time for a while but in 2002 I started having an episode of migraine and along with it I had some high blood pressure. I was seen at the clinic for this and was given an IV dose of Toradol and Reglan. One week later I was back at the clinic with stroke symptoms what had happened was that I had a migraine spasm the blood vessel shut and because of the cancer I had, I developed a blood clotting disorder which showed itself. When the migraine released, a. few small clots shot through my brain, and I have 2 areas of stroke in my brain.
Because the areas are relatively small I was able to recover relatively quickly. But I had lost my job and I was an ER nurse. Kind of funny that the medical field is one where people still don’t understand. Besides losing my job, I also lost my marriage, and because of losing my marriage I lost my home as I was moved into another house.
In 2005 my daughters convinced me to move down near them and it was the best thing that I’ve ever done. I got set up with a very good neurologist and he has been with me now the whole time. Things were going along smoothly until about four years ago when I started having chronic migraines at least some every single day. At that point I was working at a place where my insurance would not allow me to see my neurologist, and my internal med physician said he would just give me pain pills to get me through it. Looking back I can see I was having more trouble reading the small labels getting things correctly in the computer and taking more time. I lost my job at that point. I asked to go on a medical leave to get my migraines evaluated and I was denied and let go. The only good thing about this was that I was able to get back to my original neurologist and get the testing that I needed.
It turned out that what I have now is intractable migraine. I have found out through testing that what has happened is the migraine has now overcome my brain and is not allowing it to compensate for the stroke symptoms. So I am having more outward stroke symptoms that people are seeing. I have been accepted for disability. For a while I had many disturbing symptoms. I forgot a lot of things, even basic things of daily living. I even had to have my daughter hook my bra because I couldn’t remember how to do it. I got overwhelmed easily if I was asked too many questions or questions too quickly. Thank goodness that is usually behind me. Now I only get confused if I’m having a really bad migraine and that usually doesn’t happen because I’m pretty stable on my prevention medications. I cannot take triptan’s because of the stroke because anything that might narrow my blood vessels could further any injury area that the strokes have. I have many symptoms of my my migraines.
I actually have three types of migraines. I have one that is regularly comes from the eye and goes over to the back of my head and goes into one part of my neck. I have one that will start at the back of my head and goes into my neck. Then I have one that is like in the ring at the top of my head and that is the worst one. That one is the puker. I always have nausea but rarely vomiting. Usually photophobia. My biggest trigger is barometric pressure changes. Usually the end of my migraine is signaled by a visual migraine of lights.
In the past year, has insurance made it difficult to get your migraine treatment?