I am new to this site, but like so many migrainers, I’m not new to pain. My frustration doesn’t just include migraines unfortunately (if one can even say that having migraines isn’t bad enough). About 5 years ago we found out that I have a tumor around my pituitary gland that was about an inch and a half in diameter. It pretty much messed up my life for years without me knowing what was happening. After about two solid months of headaches, my doctor recommended an MRI which is how we discovered the tumor. Anyway, I now take Cabergoline once a week to control my prolactin levels.
Now I managed to go for about two years without that many serious headaches and my tumor shrank, and I even lost 50 pounds! I used to tell people I was the luckiest person they would ever meet because I got to start my life over again. My personality changed after treatment. I became bolder and more confident. I had energy for the first time in years. It was amazing…..
Until the headaches started again. Now I have had headaches my entire life. Since I can remember it was just something I dealt with on a weekly/daily basis. Most of the time they were mild, I guess. Sometimes they sent me to bed. I thought they were sinus headaches. I didn’t get the vomit inducing fearsome pain of a migraine attack until college. I had a medium gauge headache (something I was used to) and I didn’t take a pain reliever for it fast enough. One margarita and an X-Men movie later and I was throwing up on the side of a road. Since then I have had many more attacks, most of which do not cause me to vomit, but I do get extremely nauseous. About a year ago I started getting daily headaches/migraines. My doctor sent me to a neurologist who instantly said I have chronic migraines. He prescribed Zonisamide.
My last, and possibly most annoying medical issue is something that like the migraines I have dealt with my whole life but didn’t know what it was. About a year ago my doctor diagnosed me with orthostatic hypotension. Basically I get dizzy, a lot. I remember this being a problem as a child. I used to black out in hot showers. I blacked out while standing in a warm church where there weren’t enough seats. I have trouble walking around malls or museums without being able to sit down every once in a while. And it turns out both of the medications I take make this worse. In the past year, both the migraines and hypotension have gotten significantly worse. I am 32, almost 33. I finally thought I got my life back. I completed my masters and thought I was headed towards a career. But now every once in a while my body shuts down. Stress is a player for sure. At my grandfather’s funeral this past weekend my boyfriend had to rush me home because the migraine I woke up with exploded while sitting in the ceremony. I couldn’t breathe, couldn’t see straight, and all I could do was cry.
I can’t seem to get any answers as to why I get migraines or what causes the hypotension. I know the two problems make each other worse. I know I have some triggers for the migraines, but I often just wake up with them. As for the tumor, we didn’t catch it in time and it is still too big for surgery. We don’t think it will shrink any more so I am stuck with the meds. I have a really high pain tolerance, as I suspect most of you do too, so honestly it’s not the pain that bothers me. It’s when all my other weaknesses attack me at the same time. I just wish I could find a solution to the problem. And I don’t consider medication a solution.
Sorry for such a long post.