Life is Pain
"You mock my pain!"
"Life is pain, highness! Anyone who says differently is selling something."
- The Princess Bride
My name is Carly and if you're reading this, I probably have a headache. I know this not because your reading this caused me to have a headache. Rather, the reverse is true: I get so many headaches that at any given time, it's more likely than not that I have a headache.
As far back as I can remember, I've had headaches.
I remember being down in Florida as a child and learning that I had to limit my sun exposure because if I didn't, I got a terrible headache. At the time, my parents thought that it was dehydration but I wonder if it was a migraine.
I remember having to hide Advil in my backpack because I developed headaches frequently enough that waiting for the school nurse to give me medication was an unattractive solution. I took so much Advil during this time that I developed a year or two long analgesic rebound loop.
I remember trying to focus on my homework during high school while my eye socket felt like someone was sticking a screw driver into it.
I remember spending one night every six months or so passed out on the bathroom floor because my pounding head and queasy stomach made it impossible for me to leave the bathroom.
I remember having to go home from a job shadow because I had terrible headache and was nauseous to the point of puking.
And I remember finally going in to the doctor and getting diagnosed with migraines. I spent much of 2005-2011 in a distressed and stressed state punctuated by migraine pain, fatigue, and aphasia (not good for a person going to college and grad school). I also developed depression and anxiety attacks which are typically comorbid conditions with migraines.
Diagnosis and Treatment
I self diagnosed myself first at the age of 24. I loved reading WebMD and related sites and decided on a whim to read the articles about headaches because they'd always been an issue for me. Much to my surprise, the description of the migraine symptoms perfectly described what had been happening to me. I told the doctor about my symptoms and he agreed that I likely had migraines. He gave me some Maxalt samples to try during my next headache and, much to my relief, it worked. I then started on Magnesium and Amitriptyline to try to get a handle on my headaches (at the time, I was in near debilitating pain 4 days out of the month and a painful aphasic haze (which I call “The Dumb”) 10 days out of the month.
With the Amitriptyline and Magnesium, my headache days were dropped by about a quarter. That meant that I was still taking way too much of the very expensive Maxalt (I don't have drug coverage on my insurance so it was costing me $600 for 12 pills per month). Since drugs weren't getting me all the way there, I took to the Internet and looked at other options. My periods had never been regular and I had really severe PMS so the first alternative technique that I tried was birth control. Having less pain while menstruating was nice but my cycle eventually degraded to the point where I had a pretty bad migraine that would not respond to medication for a week straight. Once that started to happen, I took to the Internet to find other options.
I like to say that my ability to function is dependent on a careful balancing of medication, diet, and scheduling. Currently, I am on 6 preventative medications and 2 migraine abortive medications.
- Amitriptyline 100 mg: daily at night for migraine prevention.
- Folic Acid 2 mg: daily in the morning for migraine prevention
- Ibuprofen and Acetaminophen: As needed to relieve headaches.
- Imitrex Nasal Spray: As needed to relieve headaches.
- Magnesium Oxide 500 mg: daily in the morning for migraine prevention
- Maxalt MLT 10 mg: As needed to relieve headaches.
- Naproxen 500 mg: As needed to relieve headaches.
- Propanolol 80mg: daily in the morning for migraine prevention. Very effective but has unfortunate side effect of making me extremely woozy when I sit or stand up.
- Relpax 40 mg: As needed to relieve headaches.
- Vitamin B2 (Riboflavin) 400 mg: daily in the morning for migraine prevention
- Vitamin B6 50 mg: daily in the morning for migraine prevention
- Vitamin B12 500 mcg: daily in the morning for migraine prevention
By using the scientific method (I have a science background), I was able to identify numerous triggers in the foods and drinks that I consumed. Of course finding these triggers was only half the battle as I then had to change my lifestyle to avoid them, if possible. To date, I have found the following triggers and made the following changes in my life:
- Bright Lights: Avoid places with bright fluorescent and halogen lights. I took a class once in a strange building and could not figure out why I got sick every day. Well, when I took another class there a couple months later, the overhead lights weren't all the way on and I had no problem. I try to avoid going into that building now and would probably wear sunglasses inside if I went there again. I make sure to always wear sunglasses and a baseball cap whenever I go outside and it's light out.
- Disturbed Sleep Patterns: Avoid interruptions to a regular sleep schedule. If I get less than 4 hours of sleep or vary my sleeping or waking times by more than 4 hours or so, I get a headache. This makes international travel a lot of fun.
- Genetics: My maternal cousin and my paternal grandma, aunt, and uncle all had migraines so I was a sitting duck.
- Hormones: My migraines are very much influenced by my menstrual cycle. I tried going on birth control to try to cycle them out but that just resulted in longer, more severe migraines.
- Hunger: Avoid going more than 4 hours without eating. If I go over 4 hours, I start to get hungry and get a migraine from that.
- Loud Noises: Avoid places with prolonged loud noises and wear ear plugs when they can't be avoided.
- Malic Acid: Avoid artificial sweeteners and low calorie drink mixes like Mio.
- Maltodextrin: Avoid all artificially thickened or powdery foods like Crystal Light drink mix, Cream of Mushroom Soup, and Heinz Gravy. Also avoid most preprepared meals by companies like Zatarans or Stouffer's
- Monosodium Glutamate: Avoid primarily Asian foods like soy sauce, oyster sauce, and hoisin sauce. Chinese and Thai food are two of my favorite cuisines so this one especially sucks.
- Sodium Benzoate: Avoid preprepared drinks and shelf stable (don't need refrigeration) condiments. Most Lipton and Snapple teas have it in there and it's also in many ketchups, mustards, and other sauces. It's also in soda but caffeine is one of my headache inhibitors so it usually cancels itself out. I was getting headaches earlier this summer that I could not find the cause of. I looked at the freezies we had in the house and sure enough, they had sodium benzoate as the preservative.
- Strong Smells: Avoid places with lots of smoke or incense because prolonged exposure to certain smells causes a headache.
- Sulfates/Sulfites: Avoid things with sulfates and sulfites like beer and wine. I wouldn't drink a lot anyway but now I have a good reason not to.
- Sunlight: I have always been light sensitive but never made the connection that this was a problem until last year when I failed a Lasik screening because my pupils were too large. I was getting headaches after riding my bike and thought that it was from the exercise, which can be a trigger. However, when I put a 6 inch visor on my bike helmet and made sure to wear sunglasses, it didn't matter how far I went as I didn't get a headache.
- Tannins: Avoid foods with tannins in them like nuts and some berries. Nuts are especially problematic and I discovered this when I made muffins with walnuts in them. I regularly ate the other ingredients in the muffins without issue so when I got a migraine within a half hour of eating a muffin, I knew what the issue was.
- Weather: This is the most difficult of my triggers because there is nothing that I can do to avoid it. If there is a change in the weather, I will get a headache. I had long suspected that this was a trigger but didn't verify it until last month because I could’t think of how. Then I got the idea of comparing my headache diary with weather patterns from the same time period. Sure enough, every time that the weather changed, I had a migraine within 48 hours (either way) of the change.
Fortunately, I have also found several tricks of the trade that have helped me get rid of some headaches without taking a $50 pill.
- Benadryl: I'm still testing this one out but Benadryl and medications like it work by relieving the histamine reaction that is causing the inflammation, sneezing, itching, etc. It is also a vasoconstrictor. Since migraines bring with them throbbing blood vessels, this is a good thing for migraines. Many hospitals give it out with pain killers. It also helps nausea and causes drowsiness, which aren't bad things during a serious migraine attack.
- Caffeine: Caffeine causes constriction of blood vessels. Migraines cause widening of blood vessels. As long as I'm careful not to consume more than 60 oz or so of caffeinated beverages, I actually experience a lessening of headache pain.
- Chocolate: Chocolate, especially dark, is another substance that is beneficial in smaller quantities. I almost always crave it during my migraines and sometimes a bit of chocolate coupled with some Advil will knock out a headache before it gets too bad. Of course, having more than a cup of it at a time causes a headache but I try to stay under that for dietary purposes, anyway.
- Ice: Migraines cause widening of blood vessels. Ice causes blood vessels to constrict, which can relieve the headache. Also, I get feverish during my migraines so the cool of the ice helps.
- Icy Hot: Icy Hot works by essentially overloading the pain receptors on the place where it is applied. The dueling sensations of hot and cold drown out the sensation of the pain, causing the pain to appear to go away even though the source of the pain is still there. What this means for me is that for minor-moderate headaches that won't completely lift even with medication, applying Icy Hot to my forehead and the back of my head can quickly relieve the headache. It may not even come back (mine don't but my brother and sister's headaches do when they use Icy Hot).
- Movement: Once medication free method of treating cluster headaches is using an oxygen mask. Going off of this, I have found that sitting in front of a fan, walking into the wind, or having the car windows open can help relieve my headaches. Likewise, going for a walk or a bike ride also helps, probably due to a combination of increased oxygen usage and endorphin release.
- Salt: I've become a firm believer in the healing power of salt. If I have a headache that will not lift, sometimes having some pretzels or french fries will get rid of it.
Despite all of these treatments and tricks, I still have a headache severe enough to take the Imitrex around 4 days out of the month. I also have another 4 days or so where I feel a bit foggy or tired but not enough to merit medication. Since I started the B6, B12, Folic Acid, and Propanalol, my headaches have been milder and have been accompanied by fewer foggy days.
Fortunately, my symptoms are mostly inconvenient but they do still exist. Some of my greatest hits are:
- anger: General irritibility in the days before a migraine.
- aphasia: Difficulty finding words and using spoken language.
- depression: Extreme sadness and feelings of malaise.
- diarrhea: Irritable bowel punctuated with loose and frequent bowel movements. The constipation that propanalol causes canceled out the diarrhea.
- dizziness: I get auras and dizziness that makes it difficult to walk or drive.
- euphoria: Feelings of extreme happiness and finding many things amusing. I've found that when I'm in this state, I watch lots of cat videos and post many of them on Facebook.
- fatigue: I yawn a lot, sleep a lot, and lack endurance before, during, and after a migraine.
- fog: Difficulty thinking, reading driving, and doing pretty much anything. I call this state, "The Dumb."
- mania: Extreme productivity and difficulty sitting still. In one particularly manic state, I wrote a 5 page business plan and cleaned the garage.
- stabbing pain: Extremely severe pain that must be treated with migraine abortives.
- stomach upset: Getting nauseous gassy after eating, probably due to gastric stasis.
- throbbing pain: Milder pulsing pain that's not debilitating but makes functioning difficult.
- vomiting: Exteme nausea that usually leads to puking once or twice an hour for 8-12 hours.
The end result of my migraines is that I have to lead a very ordered and quiet life. I have to know exactly what is in my food and drink because if I don't, it could trigger an extremely severe migraine. I have to stick to the same schedule every day, which means no overly late nights or early mornings. For a couple weeks, I worked split shifts where I opened 3 days out of the week and closed 2 days. To be able to survive the early mornings, I had to go to bed early every day which made hitting closes difficult. I have to avoid foods which are likely to contain triggers, which means no Asian food, Cinnamon Toast Crunch, or packaged dinners (three of my favorite things). I have to wear sunglasses and a hat whenever I go outside and I have to have a visor on my bike helmet or I'll get sick. I can't go into certain buildings because the glare makes me sick.
Most importantly, I have learned to get used to being in pain. I've learned to go to work despite just wanting to lie down. I can usually function well enough to get by but my pain manifests itself in irritability, which is reflected in performance reviews.I've become used to attending family gatherings despite wanting to rip my head off because I don't want to ruin my family's fun.
I try to keep my migraines from influencing my life too much but they have probably colored every area of my life, including my choice of television shows. Two of my faovrite shows are/were Being Human (both U.S. and U.K.) and House. I'd like to think I like them because they're quality shows but my experience with migraines has probably influenced that as well.
For those that haven't seen them, both versions of Being Human are about three friends in their mid 20s sharing an apartment. They're just like every other group of friends dealing with money problems, dead end jobs, and startig their lives in the real world. However on top of all of that, they have to deal with the fact that one of them is a ghost, one of them is a vampire, and one of them is a werewolf. Their struggle to have a normal life while dealing with a condition that sets them about from others is definitely one that I can identify with. Although it's likely that migraines won't hurt anyone else, having them definitely puts me apart from people who don't have them, especially when those people don't understand how my migraines change my life.
My affection for the show House is a bit more obvious. House was a doctor who practices medicine despite being in severe, chronic pain. House has a reputation of being a jerk but, as someone who also deals with severe chroinic pain (my migraines), I can understand some of House's rudenss. Like him, I don't have many hours of the day where I'm functioning at 100% so I try to fit in as much activity in during the time when I'm not in pain as I can. Like him, my frustration with my pain bleeds over into my personal life because it's hard to be pleasant when I'm in so much pain that I want to die. And like him, I've come to accept a lower quality of life even though I wonder what I did to deserve it.
Life is pain! I wake up every morning I'm in pain. I go to work in pain. You know how many times I wanted to just give up? How many times I thought about ending it?
Have you taken our Migraine In America Survey yet?