“Let me guess, you have a headache again?”

(This post contains mentions of over the counter and prescription drug use)

I mentioned in an earlier post that I get headaches, this is a bit of an understatement. I have been officially diagnosed with Migraine. However, I have a hard time calling my smaller episodes migraines, because to me a migraine is being totally incapacitated, unable to move, balance or lift your head with your sinuses closed off and your eyes unwilling to focus. There also may or may not be puke. My headaches are still pretty bad, but I can still talk and walk and drive to school. I can’t make them go away. They’re at least 12 hours long reguardless, but if you have something in front of your face that says it’s going to stop your pain, you’re going to try it anyway, especially, when you have a paper to write. Despite this I can usually keep a straight face throughout the day.

I have recently started thinking about my migraines a lot as a result of this class. When we talked about the medicalization of bodies and how you doctor might not necessarily be able to know how to fix you, even though their degrees say they can. I have been to a lot of doctors for my headaches.

When I first started going to doctors in high school I thought it was a sinus problem. I had chronic ear infections as a kid and I thought maybe there was lasting damage. I went to an ear nose and throat doctor that tested my hearing, told me it was perfect, and recommended I keep a headache journal. He then prescribed me several nasal sprays and told me to buy a humidifier, he never addressed my actual headaches. I never went back to him. I’ve had fillings sanded down to reduce pressure in my mouth. When I had a root canal my doctor mentioned offhandedly that after adjusting the permanent crown it might relieve headaches. It did not. I have had my contact prescription checked and rechecked, and checked again. My mother has dragged me to Patient First during the ones that last longer than three days. I have had my neck x-rayed. They found nothing. I was given muscle relaxers, told maybe I pulled something and to rest. The muscle relaxers did nothing for the pain but they did knock me out, however, the nausea beforehand wasn’t worth it.

I’ve tried Excedrin, Excedrin Sinus, Excedrin Tension, Tylenol, Tylenol Cold, Motrin, Advil, Advil Sinus, Advil Tension, Advil Migraine, and I’ll save you some money, those are all almost the same goddamn thing with pretty much the same active ingredients. Excedrin has caffeine in it which may cause temporary relief for some people and then cause rebound headaches. My gynecologist gave me glorified Motrin and told me it was menstrual related and told me to keep a headache chart so see how it coincided with my period. Now this is almost true. I get a headache on the day before or the day of my period come hell or high water. I have tried taking ibuprofen a week before. I have tried the strongest pills I have, I have made my peace with that headache. But that’s one, that’s not what I’m going to all these doctors for. I tried to explain this and she encouraged me to try exercise. I brought the chart in to try to show her all the little h’s covering the past year of my life and she never looked at it.  Most recently my primary doctor gave me 800’s, which are jacked up Advil and told me my neck seemed fine, perhaps exercising would strengthen it. “Well maybe rowing pulled something, try heat then ice.” And I nod and smile as if this is the first time I’ve heard this.

I have also tried those au-natural remedies that you find on Pinterest. I have pinched that space in between my thumb and my pointer finger. I have drank apple cider vinegar (for some reason), I have bought cheap creams from organic hair salons and rubbed them on my temples. I have discovered pulse points I didn’t know existed. I have owned both ice and heating apparatuses that do literally noting. I am amazed when friends tell me they have a headache and then take two pills and drink a bottle of water and thirty minutes later they are ready to go.

Now there is a slight silver lining. I did find a neurologist, he also specializes in migraines. He got to know me and he gave me a book called“Heal your Headache” Which talked a lot about how much doctor’s hate their headache patients. They don’t know how to fix a headache, we still don’t know exactly what causes migraines which only makes me more angry. We can perform surgery on an unborn fetus, we can print body parts, but we can’t figure out why blood vessels in the head go apeshit and how to make them stop it. Most doctors just give pills and it improves slightly, and then the patient experiences rebound headaches and the doctors doesn’t know what to do. This is how we get labelled as lazy, whiners, drug addicts and attention seekers. It happens a lot in literature, if they don’t like a character, or want to show that they have weak morals, they are always taking to bed with a headache, there is no sympathy for these characters. What’s the age old trope for not wanting to have sex? “Oh, I have a headache.” It’s a joke and one people don’t understand.

I am currently on a drug called Topamax which is used more to treat seizures. It has a lot of terrible side effects and honestly, it’s pretty intimidating to be on. I have lost over ten pounds since the last time they upped the dose 25mg and it happened in a matter of weeks. I can’t taste carbonation and worst of all I forget words. That tip-of-your tongue feeling? That’s literally a side effect. Sometimes it’s unnoticeable and sometimes I’m writing a paper and I literally sit there and stare at my paper for 40 minutes trying to remember what I was thinking. I probably shouldn’t say worst of all. Topamax can cause seizures in people who aren’t using it for seizures. And every night at 11pm I reach for those 3 pills without hesitation, because I’ll take all of this over what I used to have before I was on anything.  I am also having all kinds of new supplements and vitamins thrust in my face to try every time I go back to my doctor’s office. Like World of Warcraft shit, I’ve been sent on a quest for Butterbur and Feverfew. It’s a little bit like throwing things at the wall to see what sticks.

It’s frustrating because I’m not cured. I have a headache at the very least twice a week. This weather has been killing me lately and providing no help for finals week. But these are headaches. I haven’t had a full blown migraine in months. Some of these headaches still get pretty bad, but I can walk, I can go to school, I might not be able to move my head or speak coherent sentences, but there’s much less of a chance that I’ll puke on somebody or drive through a red light. In one of my first meetings with him my current doctor explained to me that he couldn’t just give me pills, but that I would need to alter my lifestyle, that I was like a supercomputer. I need to shut down every once in a while of I’ll overheat and malfunction. I’m pretty sure the word delicate was used in this conversation. I remember trying to keep the smile on my face during that conversation. Crying the second I got in the car and hating myself for it, my toes are clenching as I type this. I’m not a delicate person, I don’t want to “shut down,” I don’t depend on other people for things, I don’t ask for help, and I don’t accept weakness. I hate that it had to be headaches, I have a pretty high pain tolerance, I even enjoy when I get pain in other parts of my body because I can manage that. I can breathe through it, I can do things to stop it, and if I can’t stop it, I can at least make myself more comfortable, or distract myself from it by thinking about something else. That’s one of the worst parts about my headaches, I spend almost 90% of my life daydreaming and I can’t think when I have a migraine.

Learning to be a vulnerable body has been the most frustrating part of this whole process, that book was less about pills and more about lifestyle changes. How I basically understood it was that migraines are triggered by things and everyone has a threshold for how many triggers that can stack up before they get one. People who are prone to migraine have a much lower threshold that other people. So a “normal” person might only get a migraine after drinking wine, eating chocolate, listening to loud music, smelling strong perfume, and a change in the weather. Whereas for someone with migraine, you had them at the change in weather.

This has made me alter a lot of things I do in my life, which is both helpful because I know how to at least attempt to avoid hurting myself, but I also hate the feeling of constantly having to monitor what I do. I hate the looks I get when I tell people that I can’t do something, or “not today I have a headache.” I hate the fear of being told that I’m faking. That stigma always makes me wonder after I’ve had a good couple of days, “was it all in my head?” I’ll feel guilty for being on medication. And then reality will come along and blow a fuse in the base of my neck.

Our talk about eugenics got me thinking about this. Does this count as a disability? My migraines come from my mom’s side of the family. She got them from my grandmother and I got them from her. I worry about my kids not being able to hang out with their friends because they’re in bed, or worried from doing certain things because they’re afraid it’s going to trigger a migraine. If I follow my family I’ll grow out of it in my 40’s and it will settle down, because a lot of migraines are hormone related. But, until then, I worry about finding a full time job. Many migraine-ers are afraid to make their bosses aware of their conditions in fear of losing their jobs or not getting hired. I could never work at Chipotle or any other place that has a really strong smell, or anywhere that has a ton of fluorescent lighting. I couldn’t work outside in the heat even though I love outdoor work. For some unknown reason I usually leave the mall with a headache, and I wonder how people work there for years. Despite all these fears, I am constantly given a clean bill of health. It is a surreal experience to be in this much pain and be told that you’re perfectly fine.