It has been a full year since I first saw my neurologist, and I have been reflecting on my progress. It has definitely been slow and steady, and I haven't always been convinced that the treatment is working, or is even overall beneficial.
I still struggle with the fact that I am taking a medication to chase a {different} medication side effect. I thought that maybe with time and improvement that I would get over that, but I haven't found that to be the case. I still feel slightly uncomfortable with it. That's probably because I haven't seen massive improvement in my migraines, and I don't necessarily "have my life back," so it's still sitting as this weird question mark on whether or not I made the right decision.
I also have not loved how I have felt on this medication {migraines aside}. The neurologist had told me that I could experience side effects from it {lovely}, and while it wasn't too pronounced at first, I am starting to feel it more the longer that I am on it. It has been strange things like paresthesia {random numbness and tingling in my arms and legs}, but it has also included things like memory problems or feeling more emotional or agitated. Right now these side effects are manageable, but I have to work at them; meaning, I have to work harder at focusing and remembering what I am doing, or managing my emotions and my irritability, because I can physically feel it. And while I absolutely have control over those things, it's frustrating that I am now fighting a medication that heightens those things, does that make sense? Sigh. So it's just an added piece that makes things harder. And I have to weigh how beneficial it really is.
When I started taking the maintenance medication, I was experiencing 15-20 headache days a month. Almost immediately, that kicked down to 12-15 headache days, which was a big win, but I have still been getting fairly bad migraines at least once a week. While I will absolutely take that over what I was experiencing before {beggars can't be choosers, right?}, it has still been really tough knowing that I am taking medication to chase a medication side effect, that comes with its own side effects.
Now, having a rescue medication has made a huge difference because my treatment of Tylenol and an ice pack wasn't really cutting it before. But now I can take my rescue med when I feel a migraine coming on, and it usually knocks out the migraine, and I can be pain free! Also a huge win! The downside is that it has taken some time for me to figure out the right timing on the rescue med, since I can only take so many at a time and in a month. In addition, I have found that I will take my rescue med, the migraine will go away, but as soon as the medicine wears off, the migraine comes raging back. If I take a second pill, the migraine goes away again {which is great}, but if that then wears off, and the migraine comes raging back again, then I'm stuck. I can't take another pill. And that has happened fairly often in the last few months, which is a fairly frustrating process. So then I find myself weighing my schedule and what things are most important and what things I can miss and timing out the pills based on that, and it's kind of a balancing act and just a weird mess.
I have also learned a ton about all of my new fun migraine triggers. The weather is the main one, and I can't really do much about that. I have an app that gives me a heads up about pressure shifts, and it's pretty accurate and 9 times out of 10, I'll get a migraine at the same time I get a notification. So while I can't prevent the migraine, at least I have a heads up it's coming {or at least I have a confirmation of the pressure building up behind my eyeball haha}. Also, crying. For some reason, the act of crying triggers a migraine, and that's really frustrating, considering that the migraine maintenance medication has a side effect of making me more emotional...which causes me to cry more than I normally would. So I find myself feeling like I want to cry more than I normally would, but I also find myself trying to suppress that crying because I don't want to trigger a migraine. Make it make sense.
Another big one is certain strong smells- all candles, strong perfumes, food scents, and smoke are out. I catch a whiff and I have to immediately get to fresh air or it will trigger a migraine. Even the smell of smoke on Mike's clothes from a bonfire is enough. It's so sad, and he is so gracious to shower and put his clothes in the washer before he comes upstairs. Also, heat and squinting in the sun {??} is an automatic migraine. I have to be sure I have my sunglasses with me at all times, and I have to actively focus on not squinting or frowning while I'm outside haha. I feel so high maintenance about it now, but it's just not worth the migraine later.
As I type all this out, I realize it sounds ridiculous. Because it is. I know it is, but when you suffer from migraines, you will do anything and everything to avoid them. You will deal with the weird side effects to get some measure of relief...because they are THAT BAD. It's not just a headache. It is so much more than a headache.
So this has been my year. A long, slow journey {not unlike my Crohn's journey, so I guess it's just my overall health journey}. I had been averaging 1 migraine a week, some of them lasting 2-3 days. That seemed to be my new "normal."
BUT...
My huge migraine win? Is that I went 20 days without a migraine. 20 days! And then on top of that, I took my rescue med, the migraine went away, and it didn't immediately come back! This is a HUGE win!
Will this repeat? I have no idea. But I just have to pause and recognize this victory for what it is. Because I have not gone that long without a migraine in over 2 years. 2 years. Cue the tears...but not too many ;)
And that gives me hope, and a little bit of strength to keep fighting the weird and hard side effects. Because that's 20 days of NOT having to manage a migraine. Thank you, Jesus!
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