We had a nice talk about migraines and my journey with them a couple of weeks ago. I must say that it was a topic I was hesitant to talk about, for lots of reasons. I want to thank those who commented here; your words and stories were all so kind and well thought out.
I mentioned that there was a time when I was really flailing about the diagnosis of having migraines. One of the real issues was that about eight months after being officially diagnosed, I hit a really bad patch where I was getting a ton of migraines. It was averaging three a week. Not good.
One of the things about migraines that's really difficult is that it can take awhile to figure out both what your triggers are, and what medicine might help. For triggers, it can be any number of things that might bring on a migraine. I mentioned last time that it could be weather, food, hormones, lights, smells, the barometer, smoke, temperature or other health things like sinus pressure. It's really a mixed bag, because while you may identify a single thing that you think might be a trigger, you're likely to discover that that thing doesn't always act as a trigger. And boy, this can be confusing and frustrating.
Now that I've been living with this for awhile, I have a thesis on migraine triggers, which is totally just my own gut feeling. I believe that I do have things that generally act as triggers for me. The top ones for me are High Fructose Corn Syrup, hormones (sometimes, but not always), the barometer, smoke, certain men's colognes, and cheap liquor. Any of these things could trigger a migraine, but they don't every time. I honestly think its when I have an accumulation of these triggers, stacking one on another, and usually stacking on top of things like lack of sleep or too much stress, that I'm more likely to get a migraine. It's like my body can deal with just so many things going on at the same time, but it does hit a certain point where the scales get tipped and then there's no fending off a migraine. I'm no medical doctor, and that's just my take on my own situation.
Back about a year ago, I had none of this knowledge. What I did have was this unrelenting fear that was seated in the fact that I felt I had NO idea what triggered the migraines, and I had no plan for reliable medication if I got a migraine. All I knew was that if I got a bad migraine, I was out of commission, and in miserable pain. And often times, since it is a neurological disease, I also felt like I was losing part of my mind because of the auras and other oddball stuff that went along with the disease. This scared me to death, because I very much felt that had lost control of my own body and mind. The fear was bad enough that I worried about what would happen if I could no longer work. It's not good to live in that kind of fear.
What became apparent was that I needed to figure out what caused the problem, and then come up with a reliable way to stop or get rid of migraines if I got them. If you're reading this now, and you're new to the world of migraines, please know that it will get better. I've had days when I would not have believed that. But it does get better. You just need to find a way to get back in control, and you can do this by figuring out triggers and medication.
With figuring out your triggers, you have to really start paying attention to when you get migraines. I'm going to admit, I was never good with keeping a food journal. But I did start taking a good hard look at my food intake, and what I'd injested in as many as three days leading up to when I got a migraine. This was a small epiphany for me - you can't just look at what you ate the day you got the migraine. You need to look back a couple of days to sometimes figure out what the trigger was.
High Fructose Corn Syrup was pretty easy for me to identify as a trigger. I got one of the worst migraines I had ever had after drinking a jumbo sized Coke at a SF Giant's game. By the time I got home, I was a mess. This was way before I knew I officially had migraines, but I had one of the worst headaches ever and I actually stopped drinking all dark sodas after I got home. That day. I stopped drinking them.
Later, when I'd been diagnosed, I remembered this episode and put two and two together. I then systematically went through my pantry and refridgerator and discovered that I had very very little food containing HFCS in my home. That was weird, since so many foods have it. Now that I know how sick HFCS can make me, I chalk this up to my naturally weeding out things that made me feel bad from my diet, without actually being aware of why I did it. Next time I ate a Klondike bar though, I got a migraine. What's Klondike got in it? HFCS. The pieces fit, and I've accidentally confirmed it many more times by going back and seeing what was in food after I got a headache. This isn't controlled science, but it worked for me.
Many people recommend an elimination diet, and I've tried eliminating specific things like caffeine and ALL sugar and fake sweeteners. This eventually helped me confirm what I already thought I knew. For some people it helps them figure out they're allergic or have sensitivities to certain foods.
The drug piece of this was just as hit or miss for me as figuring out the triggers. What I didn't realize when I started is that most people with migraines have at least two drugs that they have on hand. The first one is meant to stop the migraine from getting bad, and the other is a back up pain killer to take in case the first drug doesn't do what its supposed to.
There is a "designer" class of drugs, called Triptans, that were designed to just work on migraines. Triptans are considered abortive medication, meaning that you take one when you first feel a migraine coming on to stop it before it gets really bad. Currently, there are seven different Triptans and each of them work a little differently. In my case, I tried two that worked only so-so. The third one I tried worked the way it should, and I've been with it for nearly a year. The triptan I take almost always works. But when it doesn't, I have a pain killer to take that has always worked.
It took me a very long time to get comfortable with the idea of "needing" to have these medications on hand. There are other options, like taking daily medication, but I've actively selected (with a neurologist's approval) what makes me the most comfortable. Once I got over fighting the idea that I get migraines and that this means I should take medication for them, I realized it is only the responsible and healthy thing for me to do to make sure I have the medication around. Sure, its scary. Sure, I still wrestly with the idea that I didn't really sign up for this. However, I'd be a fool to ignore the positive impact that these drugs have on my quality of life. The loving, caring choice for me is to take care of myself.
I hope that this gives a little more insight into my journey. Feel free to ask questions or comment, I do feel like we are all in this together.