Migraines… What Can I say…
Migraines… What can I say other than they suck! Although they may no longer be an everyday impact on my life, it still sucks when I have one… I suffer from chronic migraines.
Now… I consider myself very fortunate because I’ve not been experiencing them for very long. In fact, I can tell you the exact date and time of my first one.
It was the last Thursday in March of 2017. It had been a stressful few weeks at work, and that particular morning, I wasn’t feeling great, like I had a stomach bug or something, so I opted to stay home. However, around noon I began to feel a little better, so I decided I would attempt to go to the office. Unfortunately, the moment I stood up, I felt like I’d been beaten in the back of the head with a baseball bat, and at the same time, a board with nails in it was trying to push my eyes out. It was intense and came on so suddenly. I thought I was going to vomit from the pain. Needless to say, I didn’t end up making it to work that afternoon; or the next day. In fact, three nights later, I was in the hospital because the pain was not going away.
Over the next few months, I would be in and out of the hospital and walk-in clinic in an attempt to find some sort of relief. Fortunately, living in Canada, I can do this without the added worry and stress of the cost just to see the doctor. I would, indeed, see several doctors in an attempt to figure out what was happening. I had MRIs and CT scans, I tried multiple different medications, going to the chiropractor. I tried heat therapy, massage, and numerous other things. But, unfortunately, they couldn’t figure out what had caused the change. I was just suffering from chronic migraines.
Before that day, I had never had a migraine or a headache that could compare to the migraine pain. However, Eric had migraines through most of his youth, pretty much up until he was well into his 20s. Rachel, too, experienced them on occasion, beginning when she was a toddler. Yet, I knew when either one experienced a migraine, there was nothing I could do that would help. I couldn’t even begin to imagine the pain they were going through and felt so helpless for them. Well, I learned… it sucks!
My experience dealing with people over the last few years has been a little all over the place. Many are very understanding, supportive and empathetic. However, some who’ve never had a migraine don’t understand the severity of the pain. Often they think it is just “a terrible headache” and that you can just pop some Ibuprofen, and all will be fine. Then there are the few who’ve only had the odd migraine in their life. I’ve heard many comments that when they have a migraine, they can’t even get out of bed. So how am I even able to go to work?
Let me put it this way. Those who suffer from chronic migraines (more than 15 headache days in a month, with more than 8 of those having the attributes of a migraine) spend their days just trying to make it through the day. Often they have so many bad days, they can’t afford to not go to work. Especially once you factor in the cost of the medication.
Over the last few years, I’ve had a running joke with many of my doctors. They would ask what my pain was, and I’d say, “I dunno, normal,” and they’d ask what I meant. I’d say “around five, I guess,” and then they’d remind me that “normal” should be zero; my “normal” pain level was around five (out of ten). And the really bad days ran around an eight. I was lucky to have maybe six good days in a month. And by good, I mean my pain level under three.
Now, I am not telling you this, so you’ll feel sorry for me. I think there are far worse things going on in the world than that. I’m sharing this to help raise awareness for those who don’t understand. As well, to let those who may be suffering know they’re not alone. There are many support groups out there. Especially now, with access to social media, the knowledge and guidance are right at our fingertips. I have been very fortunate to have a great support system at home, and my bosses are very understanding. I try really hard to hide when I’m having a bad day. However, I’ve been told that my eyes give me away; the pain is quite evident in them.
I’ve spent a lot of my time attempting to find patterns, triggers; something to help me understand why this was happening. I did discover that a few fragrances set me off, but that wasn’t always the situation. I thought maybe it was my diet or sugar levels getting too high for a while. One night, my sugar levels were almost at 17, and I ended up in the hospital from the migraine pain. The doctors figured it was just a coincidence and had nothing to do with the high sugar levels, but it did get me to smarten up for a while and watch what I ate. I had actually cut out most sugar and carbs to see if that helped at all. I did lose 25 pounds, but it didn’t relieve the migraine pain. So consequently, I fell off the wagon and gained it all back.
These migraines have taken a lot of time away from me, which I’ll never get back. Like this past Christmas and the one before, I spent on the couch and in bed. Eric and the girls were responsible for getting everything ready and set up. I felt utterly useless and sad that I couldn’t enjoy my time with the family. Now, granted, 2020 was COVID, and we couldn’t have the big family get-together at our house like we had in the past; we still had our girls at home with us. New Year’s Eve, I should’ve been in the hospital from the pain I was in, but I didn’t want to be anywhere near that place with what was going on. So I suffered at home, in a completely blacked-out room for three days. Like blankets over the already dark blinds, alarm clocks covered, and the faintest night light in my bathroom for when I had to go.
This had taken a toll on me. So in January, my doctor agreed to put me on sick leave for a few months, and he finally referred me to a neurologist. The neurologist was very thorough. He read the note from my doctor in front of me and asked questions along the way. Most importantly, he was more interested in what I had to say over what the referral stated. He had a few suggestions; increasing the medication I’m on, re-trying some of the others at a higher dosage, and botox. He then had a different idea. He wanted me to try this medication that was still pretty new. It had been through all of the testing phases and was approved for use in the US and Canada. It would be a once-per-month injection, but it was pretty costly, and many insurance companies didn’t cover it. He had a sample injection that he could give me there, and he gave me a prescription for more.
I was advised that it could take four to six months to get the full effect. So when I saw almost immediate results, I was blown away. The first month, I had ten good days. The second month, I ended up only having five bad days. I was still quite skeptical as I’ve had a few good months here and there in the past, and just when I think they are gone, BOOM, I’m back down on the ground.
Month three, I had ten bad days. However, I also got my first COVID vaccine and knew many migraine sufferers had similar reactions. Month four, I was scheduled to go back to work; I had five bad days, only two of which had to miss work.
I’m just beginning month ten of being on Aimovig, and I feel as though I’ve been given my life back. Of course, I am still experiencing five to ten bad days each month, but my “normal” is now “normal.” And the bad days typically run at only six or seven.
Aimovig doesn’t work for everyone, but it has been heaven-sent for me. The price tag is not pretty, and of course, my current insurance company won’t cover it, but we are at the point where we just don’t care. I have my life back. Sasha & Rachel have their mom back, and Eric has his wife back. I am ready to start living again.
I am Millixi, and this is me.
