I really, really need some help. I think the best way to explain my situation is to give you the whole story. And, truth be told, I think telling my story will help me feel a little better. This is a support group forum, so I think this is the right place to post this.
Migraines run in both sides of my family. My grandfather on my dad’s side got them and taught me some techniques to try to ease them up. My great-grandmother on my mom’s side would get such painful migraines that she resorted to pouring gasoline over her head because that was the only way she could get the pain to stop and was also what eventually gave her cancer. My great-uncle ended up teaching me a technique she used before the migraines got too bad (squeezing both sides of my head inward; I guess it’s counter-pressure?). My mother also gets migraines.
Well, I guess having migraines on both sides of the family meant I would get extreme migraines. I started getting them when I was 8 years old. The very first time I ever got a migraine, I was in school. The school day was just about to end and all the students were lining up in front of the classroom door to get ready to go out to the buses. I’d started getting a headache earlier in the day, but it didn’t get bad until about 30 minutes before school ended. When I stood up to get in line, I felt like I was going to faint and ended up throwing up in the trashcan. I spent that whole night laying in my mom’s dark and completely silent room, crying my eyes out as I went through what would become my migraine schedule: cry and thrash in pain for an hour, violently throw up, get enough relief to sleep for 15-30 minutes, and then start all over again.
I went to multiple different doctors, all of whom were extremely surprised and confused as to why I, an 8-year-old girl, was getting migraines on a regular basis. At first, they couldn’t do anything for me. They told my parents to give me children’s Tylenol when I got a migraine and that didn’t do anything. As time went on, I missed countless days of school due to my migraines. In fourth grade, I would go to school feeling normal and then 11 o’clock would come around and my head would feel like it was going to explode, so I’d have to get my mom to come get me. This happened almost every day for six months.
When I got to fifth grade, they stopped happening so frequently, but when I did get them, they were worse than before. One night, I was rolling in pain in my mom’s bed and she was trying to comfort me. I finally had enough and just started asking my mom over and over again to get a shotgun and blow my head off. That freaked my mom out so much that she demanded my doctor do something. They put me on some sort of green liquid that tasted like death and did nothing for my migraines.
I ended up going to so many specialists, I can’t even keep track of them. And at every single one of them, we got the same answer, “She’s perfectly healthy. There’s no reason (insert body part here) should be causing her migraines.” In the meantime, our family doctor had retired, so I started seeing a new doctor in our town. He told me that I could expect the migraines to get worse when I hit puberty.
But the good news? When I turned 13, he would be able to give me a low-grade pain killer to help me get through them. And when I turned 13, he did just that.
And then I was able to function normally. Yes, the pain killers did make me a little loopy at first, and I would still have to stay home when I got a migraine. But then I got used to how they made my body feel and I was able to be productive with a migraine. I was able to join extra-curricular activities without worrying about getting a migraine that would keep me from practices, games, etc. And, yeah, every now and then I would get a migraine that would still keep me down even on painkillers, but those happened about once a month.
(Oh and let me state here that pain killers were not the only treatment I had; I was to try tylenol and ibuprofen before the pain killers, I had to keep a migraine and food diary, and my doctor checked my blood every month to make sure I wasn’t abusing the painkillers.)
Over 5 years, we used my diaries to see if any outside stimuli were causing my migraines. The only one we could conclusively say did effect my migraines was the weather. Any change in pressure outside could cause me to get one, although we didn’t know why. We were exploring that when I turned 18.
I tried to refill my pain medicine at the pharmacy and they told me I had no refills. So I called my doctor and he told me I had to come in for a visit. I did and that was when he explained to me that he was a pediatrician and that he couldn’t treat me anymore since I’d turned 18.
Back to square one.
I’ve gone to so many different doctors, I can’t keep track anymore. Each one put me on this or that medication which was supposed to stop the migraines from even happening, but they never worked. When I asked for even just a few painkillers in case I get a migraine, I was told straight-up no every single time. I started to become uncomfortable going to doctors about my migraines because many of them would look at me like I was an addict trying to con them into giving me opiates.
Now, I’m hoping that no one will judge me in this forum. More than likely, we’ve all had our fair contact with migraines: either you – the person who is reading this – have suffered from migraines yourself or know someone who suffers from them, so we’ve all had experience with them, right? So you know that people will go far to try to ease the pain (remember my great-grandmother pouring gas over her head?).
While I was trying to get doctors to take me seriously, my mom started seeing a new doctor for her migraines. He found that she had a vertebrae out of place in her neck, which was causing the muscles in her shoulder to spasm and cause her pain that radiated up to her head. He put her on a different medicine that was developed for those addicted to opiates, but had also been found to help treat pain without the side-effects of opiates: Suboxone.
She said it really helped her, that it got rid of the pain without making her feel funny. And when I got a migraine one day, she decided to give me some to see if it would help. And it did. Tremendously. It doesn’t get you high like opiates, it just takes the pain away, and you can function like completely normal. So I asked her if I could see her doctor, too. Unfortunately, Suboxone hasn’t been approved for adults under the age of 25, so I couldn’t get any prescribed to me. So my mom decided to just share with me until then. Doctors weren’t listening to me, she was having to take care of me all the time when I did get a migraine, I couldn’t function properly enough to keep a job because I’d have to call in all the time.
And it was during this time that my boyfriend introduced me to marijuana. He said he used to smoke a little in high school and that it would probably help with my migraines. So I tried it and, yeah, it works…to a certain extent. First of all, I don’t smoke. My doctor (the one who actually helped me) told me a long time ago that I should never start smoking because I have a higher chance of having a stroke simply because I have migraines. If I add smoking on top of that, there is a high chance I could have a stroke. So I don’t like the whole smoking aspect of marijuana. Secondly, it really only helps to take the edge off, enough to help me sleep through the migraine. Thirdly, there’s absolutely no way I can function on that stuff. I mean, it gets you high, so I wouldn’t be able to work or go to school on it. But it did help a little with the pain, so between nothing and marijuana, I choose the marijuana.
So for about 3 years, my mom would give me a little Suboxone in case I get a migraine and if she wasn’t around or was out, I’d smoke a little pot to help with the pain. That’s how I handled my migraines. It wasn’t a perfect system, but it helped.
But now…well, now I don’t know what to do anymore.
I moved out of my parents’ house and into an apartment with my boyfriend an hour away from their house. I knew I wouldn’t be able to rely on my mom as much as I did when I lived with her, so I started doing research into doctors who might be able to help me. I tried to see a neurologist, but he wouldn’t see me without a referral from my family doctor and since my insurance doesn’t list a family doctor (because I can’t find one who will actually work with me), I don’t think I can get a referral.
But I’m also 22, in a brand new place, just starting out my life. I don’t have a lot of money. I’m living paycheck to paycheck, so I don’t really have the money for all sorts of different doctor’s visits. My mom stopped getting Suboxone from her doctor because she’s found another medicine that works better, so I can’t go to her anymore.
I’m tired of living in pain. I’m tired of going to a doctor for help and having him treat me like a drug addict. I’m tired of not being able to live a normal life. I’m tired of holding my spouse back from things he wants to do because I get migraines (he wants to move to a place that has rapidly changing air pressure, which I can’t do because I get migraines when the air pressure changes).
I need help and I don’t know where to find it. I don’t even know where to start to find it. So I came here to see if anyone who has had more experience with doctors and migraines could help lead me to the right place. Any suggestions would be greatly appreciated. Thank you.