After 25 years… A cure?
I think I was about 12 years old when I got my first migraine. I was at my first sleepover party which I was SO excited about and it seems that my excitement, as usual, through my head into a tailspin. I think I spent the night of the sleepover with a bag of ice on my head, although I barely remember it. My mom told me that she used to get them as well. I spent about the next 10 years literally burning a hole in my gut with NSAIDs. After an upper GI-scope confirmed that I was raising my chances of esophageal cancer if I didn’t stop taking them I headed off to a neurologist for better options. EEGs and MRIs ensured there were no tumors and it was just good old-fashioned migraines. I spent about the next 12 years experimenting with migraine logs, beta blockers, anti-depressants, pain killers, anti-seizure meds, supplements, vitamins, herbs, antihistamines, muscle relaxers, botox, until one day I had a different kind of migraine. One that left me paralyzed on the right side of my body and in the ER with what appeared to be a stroke. I told the doctors in the ER that I had a very bad migraine and now I couldn’t move my right arm, the right sight of my face was drooping and I was having trouble talking. The EMT and nurse trainee gave me an IV and a couple of meds and left, tending to patients they thought were more important. About 15 minutes later they came and asked how I was feeling. Turns out they had given me benedryl for the headache. I explained to them (again) that I wasn’t there for a migraine. The issue was I had paralysis… and like they ALWAYS ASK in the ER “Is this migraine different then your typical migraine???” YES!!! YES IT IS!!! They told me to go home, get some rest and come back tomorrow if I still had problems. I was livid! The next day I woke up and, sure enough, I still had paralysis. But today, things were different. Different nurse and when I explained to her what happened the previous day I could see the color drain from her voice. The immediately did a stroke test and an emergency MRI. The good news was I actually hadn’t had a stroke and I regained mobility after a couple of weeks. The bad news was that my migraines were gaining in complexity. I had something called “hemiplegic migraine” which did, in fact increase my chances of getting a stroke. I also learned that there aren’t a whole lot of doctors who know anything about hemiplegic migraines. I did a ton of research on my own. A very important detail… I could not take triptans, the “go to” for migraines these days. My neurologist went through potential options but the bottom line was I didn’t have many and she felt that a low-dose long-acting narcotic pain management program was my only possibility. She recommended a pain management specialist and I made an appointment for a consultation. When I went to see this doctor I immediate got a bad feeling. While I am more than aware of the amount of abuse of prescription drugs in the US, he seemed to be especially suspicious (full disclosure, I am young, female and have tattoos… but I also lead an extremely “non-party” lifestyle, have degrees in math and engineering and am a foster parent with my husband… can’t always judge a book by it’s cover). So rather than working discussing a plan on where we go from here, the doctor said he wants me to have surgery. The surgery he recommended was some kind of severing of the nerves in my neck and cauterizing them… it was something my neurologist and I talked about but she recommended against because my migraines start behind my eyes. She felt it would not provide me with much relief and would be a huge procedure to go through for little, if any, return. In fact, she felt I could end up being in more long term pay. When I asked him about the neurologist’s recommendation, he made it clear he would be deciding from here and I would have to through drug testing first. No issue I said. I get regular drug tests as a condition of my employment. Going back to my neurologist she was very disappointment in what happened with the pain specialist and was starting her quest to look for a new doctor to work with. In the meantime, my primary care provider was kept informed of the situation and volunteered to work with the neurologist to put together a program to start out with. We start with long release Oxycontin. It helped some but the program I was following was really killing me with rebound headaches. After a bit of back and forth, my PCP decided to try a pain medication called “BuTrans”. It doesn’t seem to be hugely popular but this was one of those “time to pull a rabbit out of a hat” moments.
The medication has literally been a godsend. No headaches, no rebounds. no “loopy” feelings so I work, drive, etc. It keeps everything exactly as it should. Although this medication is an opiate, it doesn’t give you “cravings” or withdrawal type feelings. It feels no different than taking tylenol. I’m not sure why no one ever recommended to before but this is just a whole new world!