No Such Thing as a Pain-Free Day: Living with Chronic Migraine

No Such Thing as a Pain-Free Day: Living With Chronic Migraine

I'm woken up at 1:30 in the morning. It's a school night. I have class in a little over six hours. And yet, I know I won't be going. Because I'm not woken up by a sound, or light...instead I'm woken up by pain. I rummage through my nightstand and pull out the multiple pill bottles inside without turning on my bedside lamp, because the light will only make it worse. Hardly even opening my eyes, I fish out 800 milligrams of ibuprofen, 1000 milligrams of acetaminophen, and one of my three prescription medications. I have done this so many time, I know which pills are which just by the weight of the bottle and the feel of the drug. I toss back the ten pills with one gulp of water. Then I curl up in a tight ball under my blankets, put my second pillow over my head, and try to fall back asleep, the throbbing in my head growing with each heartbeat.

This has been my life since I was twelve. For the past nine years, I have been living every day in near-constant pain, and near-constant fear of it worsening.

I have chronic migraine.

Chronic migraine is defined as having "15 or more headache days per month over a three month period, 8 of which are migrainous" (WebMD). It is categorized as a disability, and there is no cure. Sure, there are medications on the market that reduce migraine symptoms, side effects, and can sometimes prevent further episodes, but they never go away. Not completely. 

I average about 25-30 headache days per month, 80% of which are migrainous (without medication). Which means I am above the medical definition. I have not had a pain free day in nine years. I can't remember what it was like to not be hurting in some way or another. As you can imagine, this hindered my everyday life quite a bit.

I wake up again at eight. Enough time has passed where I can take another 600 milligrams of ibuprofen without high risk of overdose. Also at this time, I cup my hands over my ears and shout for my mother. I have to cover my ears because even my own voice is too loud for my migraine-addled brain.

My mom appears in my doorway and she takes in the scene. My blinds are closed tightly, but I have my eyes squeezed shut and a pillow over my face. Despite being cocooned in blankets, I'm shivering. My face is pale and clammy. There is a wet mark on my pillow where bile had risen up in my throat during my sleep and pushed through my lips. The smell of it makes me want to lose my dinner from the night before.

She doesn't say anything, just slowly backs out of my room and pulls my door shut. She calls my school and informs them that I won't be coming to class that day. She's had to call in so much that the receptionist correctly guesses what is wrong with me before my mother can even tell her. 

Throughout my middle-school and high-school careers, I was in serious danger of being failed out of school due to my numerous absences. There was a lot of talk about summer school, slower-moving programs, even homeschooling. It has often been described as a miracle that I managed to graduate high school without having to repeat any classes. 

Most people don't understand just how debilitating migraines can be. Side effects are handicapping and can range all over the body, not just focusing in the head. Every person who suffers from migraine has different side effects, but these are mine:

• Nausea and vomiting
• Numbness in the hands and feet
• Lead tongue: this is when the muscles in the tongue constrict to the point where it doesn't move in the mouth and is extremely painful
• Sensitivity to light, sound, and smell
• Sharp, throbbing pain behind the eyes
• Involuntary jaw clenching (which in turns makes the migraine worse, which worsens side effects, and so on and so forth)
• Lower back pain
• Muscle spasms in the neck and shoulders
• Dizziness
• Extreme fatigue

If I'm lucky, I only have one or two of these side effects accompanied with the migraine pain. Usually I end up having between three and five. I've only experienced all of them at the same time twice in my life. Both times, I ended up lying in my bed for three days straight, crying for hours on end from the pain. I needed help to go to the bathroom and I wasn't allowed to shower or take a bath in case I passed out and hit my head or sunk beneath the water. I was put on an all-liquid diet and lost a dangerous amount of weight.

My most common side effects are the light/sound/smell sensitivity, nausea, and the back pain. I've been able to combat these with solutions of various degrees of success: wearing sunglasses at all times, using earplugs, breathing shallowly through my mouth. I suck down pain medications like ibuprofen and acetaminophen every 6-8 hours, and I drink a lot of water and gatorade to keep my electrolyte levels high. Over the next few days following the migraine episode, I eat a lot of foods high in sodium and iron to combat deficiency.

It's another seven hours before I wake up again. This time, I'm a little more coherent. I look to my bedside table and see that there are two slices of toast on a napkin. No butter. I can't keep it down otherwise. The toast is cold, but the dryness of it feels good in my sticky mouth. I nibble through half a slice before I feel too sick to continue. I grope around for my sunglasses and then slide out of bed onto my carpeted floor. I'm too dizzy to walk, so instead I crawl to my door. I knock on my side, each rap of my knuckles pounding in my head like gunshots.

It takes a minute, but my mom cracks open my door and looks down at my hunched form. She bends down to check my temperature, and sprays some menthol water on the back of my neck. The minty fumes clear my sinuses, though the smell makes me gag. I ask for something to drink and she brings me back a mug of hot water, and then tucks me back into bed. I slept through sixteen text messages and four missed calls from my friends. School has been over for an hour.

There are dozens of articles out there with advice on how to combat migraine. And believe me, I've just about tried them all.

There are the more basic ones, like exercising, cutting out red meat, eating more red meat, drinking plenty of water, having a healthier sleep patter. I like to call these the "yuppie suggestions," as in, the advice I get from people who have never gone to medical school or never had to deal with migraine before. At these, I nod and smile and say "thanks for the advice" but on the inside I'm screaming. Just to make it clear: I've tried these. They don't work. Please stop giving me advice on something you've read one WebMD article about. It really doesn't help.

Then there are the "hippie medical" suggestions. Medical marijuana is the most common one I get. Also celery-root tea, incense meditation, and massage therapy. These are the suggestions where I'm hesitant to try them because however many articles there are about how these helped people with migraine, there are as many articles if not more about how these "solutions" made migraine even worse. I've tried the celery-root tea and the incense meditation, and I had some extremely negative reactions to both. Massage therapy is expensive to keep up with, and to be totally honest, I have no intention of ever trying marijuana, medical or otherwise.

The last category is the "medical expertise" category. Obviously, this is one I take the most seriously. These are all suggestions that I have been given by neurologists, OMTs, and people who also suffer from chronic migraine, including my own mother. Daily preventative medications, onset medications, acupuncture, Botox, etc. Currently, I have only daily preventative, and three onset medications. I haven't tried acupuncture or Botox because of the price, though both have been heavily discussed between me and my neurologist.

I've had MRIs, EEGs, CAT-scans, you name it. Anything to figure out why I have chronic migraine. The easiest explanation is that they're hereditary, which they definitely are to some degree. My mother, maternal grandmother, and both maternal aunts all suffer from migraine, though they're episodic and not chronic, like mine. Another possible explanation is a violent trigger. When I was twelve I hit my head on a rock and had a memory-lapse seizure (also called petit-mal seizures), where I lost about eight hours of my memory. The next day, I had my first three-day migraine. Over the next few years I would more petit-mal seizures, losing about 10-15 minutes each time, but thankfully they stopped or either became so few in number and time lost that I don't even notice them. But the migraines never stopped. I've had good and bad years, some where it seemed like I was only getting migraines during my menstrual cycle, and some where I would be going two weeks or more without a flux in the pain.

Once I'm able to straighten myself up to a sitting position, my mom comes in and sits on my bed with me, a notebook open in her lap. We discuss what I did the day before: the foods I ate, how long I spent in the sun, how late I stayed up, how many hours I spent on my phone. We write them all down for reference for the next time I see my neurologist, in case he can find a common denominator between all of my migraines. Find a trigger, find a solution.

Like the side effects, everyone has different triggers that can cause a migraine. Some are preventable, like a certain food, while others are unpredictable, like weather. Here are a few of my known triggers:

• Peanut butter (in large amounts)
• Garlic (in any amount. It sucks)
• Carbs (again in large amounts)
• Atmospheric pressure changes
• Humidity level spikes
• Flashing lights/strobes
• Dehydration
• Pollen deposits
• Dry winds
• Overexposure to sunlight
• Chemical and perfume smells

Some of these triggers are found in my family. For example, my aunt can't eat peanut butter at all lest she get a migraine. My mom is extremely sensitive to perfumes. And my grandmother always got a bad headache when a storm was about to hit (she refused to admit she got migraines). I can't help a lot of these triggers since they happen outside of my control, so it's really just a matter of catching the migraine before it happens.

Most of the people who suffer from migraine have what is called an aura. This is kind of like a warning bell that goes off, and allows them to take an onset medication before the pain sets in, so they can still go about their day without too much of a hindrance. Auras can be anything, from a color tinge on the outskirts of your vision, to a tingling in the hands, to a bad taste in the mouth. I, unfortunately, am part of the unlucky few that don't get auras, so there's nothing to warn me that I'm about to experience a migrainous episode.

Migraines are caused by a spike of serotonin in the brain. A lot of people think that because of this, your serotonin levels are extremely high, but it's actually the opposite. Which is a problem for me, especially, because I also have severe depression and anxiety.

Depression and migraine are like water and potassium. When they collide, they do so in an explosive way. Both are due to serotonin imbalances. Because of this, antidepressants and migraine preventatives are high in serotonin in order to try and rebalance the chemicals in the brain. However, if you aren't too careful, this can cause serotonin syndrome. Serotonin syndrome is normally very mild, but can be fatal is it is left untreated and you don't take measures to decrease your serotonin levels. Quoting my doctor, "If you have both depression and migraine, you're basically screwed either way." Symptoms of serotonin syndrome include:

• Agitation and restlessness
• Confusion
• Rapid heart rate
• High blood pressure
• Dilated pupils
• Loss of muscle coordination
• Heavy sweating
• Diarrhea

Every time I have a particular bad migraine and have to take more than one onset medication, I'm at risk for serotonin syndrome. If I do get it, I have to be hospitalized overnight and my medications need to be flushed from my system, which makes my migraine even worse because I don't have anything in my body counteracting it.

The next day, the migraine is still there but it has decreased enough where I can go to school if I keep my sunglasses on and earplugs in. I shuffle through the motions of going to class, feeling like I'm walking uphill through water. The bells signaling the end of a period sound like cannons are going off right next to my ears. I have to deal with teachers shouting at students and students shouting at friends. At lunch I duck into the bathroom to vomit. I go to the nurse, who keeps a box of my onset medication in her office at the request of my neurologist. She doesn't let me take it until I eat a granola bar in front of her, which I can barely force down.

Some friends are understanding. Most thing I'm faking. Most don't get it when I say how much pain I'm in. Nobody understands migraine unless they suffer from them too. When you've done all you can, all there is left is just to wait it out until the pain is manageable.

Migraine pain is the worst pain I have ever experiences. This includes; when I broke my wrist, when I got hit with a softball in my ribs, when a ligament tore in my ankle and foot leaving me on crutches and in physical therapy for three months, and when I was hit by a car while riding my bike. And the problem with migraine pain is that it isn't comparable, because everyone's pain tolerance is different. I've tried to explain what it feels like to my friends: it's like someone is swinging a sledgehammer into my temple; it's like my brain is going through a meat grinder; it's like someone is stepping on my head repeatedly with metal-spiked shoes. To my friends that have children, I've said it's like labor. Every time I try, they always tell me I'm being over-dramatic. It can't possibly hurt that bad, if it did I'd be crying, I'd be in the hospital, I'd be incoherent. 

But that's the thing.

I have cried. I have been hospitalized. I have been to the point of incoherence. I've gotten so used to the pain, and the flashes of intense agony, that my normal pain scale starts at about a 6, whereas everyone else's starts at a 0. 

I've had chronic migraine since I was twelve. I am now twenty-one. And I will likely be a sufferer of migraine for the rest of my life. Some days are good; some days are bad. Some days I feel like digging into my skull and pulling apart my brain. Some days I can go about my day and nobody would the wiser that I have a disability, an illness. Most days I'm in-between. I'm not in the most pain I've ever been in, but people around me can tell there's something wrong. 

Living with chronic pain isn't something I would wish on anyone. Dealing with your brain warring against your body every day of your life is burdening and agonizing, but that's really all you can do. 

Deal with it.

--------------------------------------------------------------------------------------------------------------------------

Copyright 2019 Allyson Myhre

Know someone who has chronic migraine? Check out americanmigrainefoundation.org to learn more and find out how to help.