“I’m not avoiding you, I really do have a headache”
This is my life, which has been conquered by migraines.
I have always gotten migraines, for as long as I can remember. I know I had them as a child, but I can’t remember specific events (not surprising). I would often sit at the dinner table refusing to eat certain foods that I “didn’t like”, to the point of tears and bedtime. I was never sorry for not eating these things either. I found out as an adult that it was because I could tell they were going to give me a migraine.
I don’t know how to explain it, but it was sort of by smell. Cream corn does not smell good to me, and when its in front of my face and I breath it in, I get a weird feeling in that space between my mouth and my brain, but behind my sinuses if that makes any sense. It didn’t matter how much my mom yelled at me to eat (she was actually quite scared about my diet) or how long I had to sit there, I would absolutely not eat it. Same with pork and beans, and a few other foods.
As an adult I researched migraine triggers so that I could better avoid them, and that’s when I found out that a lot of canned food, especially overly processed, causes migraines. It has something to do with a chemical they contain. For example cream corn would be the death of me (so to speak), but I LOVE corn on the cob, frozen corn, etc. so long as it is not processed. The thing I find most amazing is that I didn’t know what that weird feeling was about, and objectively cream corn tastes okay, but somehow I knew not to eat it. For this reason, I tend to pay attention to my sense of smell when it comes to food.
The migraines I do remember are the ones I got in high school. Even so I don’t remember the pain or much more than flashes of ice packs. What stands out are the ones that left me passed out on the bathroom floor. In high school I had the most severe migraines of my life, with the most frequency. They would be so bad, that I couldn’t open my eyes, I could barely walk, and I would throw up. My mom would try to give me gravol, but it was always this ridiculous “cherry” flavored chewable one that made the migraine worse (because of the fake cherry scent/flavor, which I also didn’t figure out until I was an adult). Almost every single time my mother gave me this gravol, I would immediately throw up. This confused my mom, and I remember her frustratingly telling me that wasn’t how gravol was supposed to work. Hugging the toilet can be unpleasant enough, but I can not think of anything I’ve experienced that is worse than retching with a migraine and an empty stomach.
The muscles in your neck and face tense up when you’re sick, which I never noticed until it happened while those same areas where pounding with a stabbing, deep pain. Add to it a sensitivity to smell as well, and the entire experience is indescribable. The only light was that I knew once my stomach settled the worst was over. My mom would bring me water and new pain pills, and I would sleep on the cold tile against the bathtub, using her clothes from the previous night’s bath as a pillow. The cold felt good, and my mom’s scent was comforting, and I realize as I write this that she never once disturbed me so she could pee even though it was the only washroom in our apartment. Eventually I would get up, sometimes hours later and move to my bed.
These migraines were no doubt caused in part by hormones, because they were never so bad before puberty, and I have not thrown up from one since I began taking birth control (partially for the migraines). I am actually somewhat scared of these migraines returning if I ever go off my prescription. Its hard to convey just how bad they were, because I can tell you they were horribly painful, but you will never understand my interpretation of the pain.
I have had a fractured knee and other broken bones, pulled most of the muscles in my torso, and had a deadly infection in my hand, but none of them compared to the pain I felt during those migraines in high school. Since then, my migraines have lessened in severity, but increased in frequency. I’ve noted all my triggers, but you can not always avoid stress, especially when it comes emotionally. There is nothing I can do about the weather. I have eliminated all the foods that give me migraines, I don’t drink anymore, I manage my time and even include extra time/fail-safes in case I get a migraine. I have evened out my sleep schedule, and maintain as much of a routine as I can. I maintain a steady level of caffeine, as too much will give me a migraine, but too little will cause withdrawal and migraines anyway. Even so, they pop up all the time.
Generally I get level 1 to 3 migraines a couple times a week. These are migraines that I try to ignore and don’t require taking pain killers as I’ve grown to tolerate them. The less tylenol/advil/aspirin I take, the happier my organs will be. I’ve gotten so used to level 1 migraines, that sometimes I ignore it before I realize its there. Someone might ask me how my head is, and I will realize I’ve had one just sitting there beyond my notice. Level 3 pain causes me to debate taking something for it. I will generally get a level 4 to 6 migraine every 2 weeks, give or take and depending on the weather. These are migraines I will take something for, and that will be that.
I get level 7 to 10 migraines maybe once a month. These migraines won’t go away without a max dose of two compatible pain killers which I have discussed with my doctor, such as advil and tylenol, or tylenol and aspirin (Never advil and aspirin, its unsafe), and secluding myself with an ice pack in the dark. These suck, because that means no computer, phone, books, puzzles, or anything that you can’t do in the dark. I haven’t found anything to do except sleep so far. Even so, these migraines will not go away half the time. I’m currently heading into day 4 of this migraine, which has required and ice pack for the first 2 days, and is still sitting in my temple and messing with my eyes.
Aside from the pain, I get sensitivity to light, sound, smell, and even touch, dizziness, sometimes trouble speaking depending on which side of my head the migraine is situated, nausea, sinus pain, and my jaw and neck tense up. Sometimes, I can’t even handle the tiny red lights on electronics when they’re off. Its not unusual to find cardboard taped to cover them, or any place where there is a light source. Sometimes I need it to be so dark that I can’t see my hand in front of my face. I need to be bundled in a blanket for warmth, but the coldest possible ice pack on my head, no cloth in between. Sometimes fresh air helps, but sometimes it makes it worse and is a hit or miss solution.
I kept a migraine diary for a year and took it to a doctor to discuss. To my utter and endless frustration, the discussion was basically “Yes, I see you get migraines, know your triggers, and there is nothing more I can do except suggest unproven homeopathy remedies”. The doctor noted the frequent sinus pain, and gave me an nasal antihistamine to help keep my sinuses clear, because maybe it would help. She gave me a one month trial free, it did nothing (except relieve my allergies). Another different doctor told me to take 400 milligrams of b2 (riboflavin) to see if it would help. It tasted like dandelions, and I didn’t notice any difference. At least it made sense though, as riboflavin is related to the blood stream and flow, which is believed to be related to the cause of migraines (increased flow, or size of the blood cells, they actually still don’t know). So while I don’t bother with the pills anymore, I do look for ways to include it in my diet (protein drinks and some breakfast replacements have tons). I was also told to take fever few, because someone did a study and thinks it might help. I haven’t bothered though, to be honest.
The doctor I took my diary to also noticed I carry a lot of tension in my shoulders, and suggested massage therapy. I didn’t do this either, but not because I didn’t think it would help. For one, it isn’t covered by OHIP, and who knows how often I would have to go for it to be effective. If I’m having weekly migraines, would I need to get a massage every week? That’s beyond my price range. The most significant reason however, is that I don’t liked to be touched. I’m fine with doctors poking me, and with family and close friends (and people I’m attracted to) being in my space. I’m not going to flip out on a crowded bus, but I don’t like it. The thought of someone I don’t know putting their hands on me stresses me out enough to give me a migraine. Coincidentally, my shoulders are an area where I’m not even very comfortable with those close to me touching. I don’t know if I tense up because of contact, or if I don’t like contact because I’m tense. I figure its like a wounded animal: it hurts, so like hell they’re going to let you poke it. I keep intending to buy an at home massage thing (appliance? what?), but it’s never on my mind when I’m out, or I can’t justify the expense. But I know my shoulders are an issue simply by the popping sounds they make as they loosen up on the rare occasion that everything is lovely.
I’ve chosen to blog about my migraines because lately I feel like they are wearing on my sanity. Mental health has been a big topic lately in the news and on social media, and it got me assessing my own. Do I need to speak to someone, or am I mentally healthy and dealing with my migraines in the best way possible? The hardest part is that I am in pain on a regular basis, in my head of all places, and there is nothing anyone can do. This is so utterly unfair, and my migraines have taken over my life in ways that I never expected. I don’t go out with friends much, because if the plans are too complicated, or the weather is bad, I will get a migraine. After cancelling plans so many times with the excuse of “I have a migraine”, people stop believing you, assume you just don’t want to make the effort, and stop inviting you. I am now in the position where I have a lot of friends, but no best friend, and no one to make any plans with (in part because after university everyone lives far away). Generally I have always made up for this by making my roommates my best friends, but now I live back home with family and it doesn’t work the same.
I’m not sure if I’ll be able to keep on dealing with my migraines forever. I suspect right now part of the problem may be my life situation, as I’ve just finished university, but haven’t been able to start my life yet (no related job, and I can’t even afford to live on my own) and am lacking in good exercise (winter is just ending). However, if it keeps on as it is, I think it will start to wear me down into a miserable, angry person, and I don’t like to think of what might come after. Its particularly bad right now, having had a migraine for 3 straight days, and my mood is in the hopeless gutter. It actually blows my mind how unfair it is that there are people out there who don’t get migraines at all, or rarely, and here I am living day to day, making plans based on if my head hurts today or not. It strikes me that this is not okay. This is not a healthy state. But the doctors can’t fix it, so what more can I do.