Monday, September 26, 2011

Migraines and Me: Part One by Alex Snider

These are the things I know about migraines:

I've been getting them since I was 12. So... 16 years. Yep.

Usually I get at least three a month, sometimes more and they last 2-3 days. That works out to more than 1,152 days of migrainey fun. Note: It's not fun.

Number of times I've wound up in the ER because the pain was too much: Around 15 times.

What happens: On a scale of 1-10 (10 being the worst), the pain is about an 8. It is an unrelenting dull throbbing that will not stop, directly behind one of my eyes. There is a tightness further back in my scull and a miserable ache in my neck. I feel like if I could just drill a little hole into my scull to relieve the pressure, I would feel just a bit better. I throw up. A lot. Up to 15 times in one day, often until there's blood. I can't eat anything and any time I drink anything I immediately throw up again. It's a pretty vicious cycle of dehydration. When it's over I need a day to recuperate because my body is just so depleted, not to mention how sluggish my mind is. How I could be exhausted after sleeping for 16 hours a day for 2-3 days...

What helps: Icing my face constantly. Heating pad on my neck. Mostly it numbs the pain enough so I can sleep/not weep. For a day or two after I have trouble seeing out of whichever eye was the side the pain was on because of the incessant icing, and it keeps watering. Probably doing some damage in the long run... Pain killers and anti-inflammatories don't work. Light doesn't bother me too much and luckily I have zero problem with sound so I can listen to TV/movies to pass the time (can't really watch what with the icy-eye). Small victories!

Things I know that cause them: Alcohol. Too much sleep. Too little sleep. Not enough food. Not enough water. The beginning of my period. The end of my period. Stress. Crying. Exercise. Strong odors. Fluorescent lights. Stiffness in my neck/back. Lake water up my nose (usually caused by water-skiing). Apparently progesterone medication but that's a whole other ball o-- THEY GAVE ME A STROKE MIGRAINE (more later)! Eye strain. Atmospheric changes. Atmospheric pressure. Oh, and nothing. Thing is though, there has to be a perfect storm for any of these to trigger. One night I could drink six beers and be fine but a week later one will leave me with a migraine for days.

The help I've received: This is really the crux of this post. The help I've received for this chronic, life-hindering problem is shockingly negligible. When I was about 16 I saw an ear, nose and throat doctor who performed a sinus operation in the hopes of solving the problem. And then... That's was it for about 10 years until I went to see a naturopath (who was amazing and incredible and oh man, so amazing!). I never stopped asking my GPs for help, begging for help. But their responses were always to just thrust more sample drugs at me (drugs which cost upwards of $15/pill). 

Never was there any attempt to try and figure out why I was getting migraines in the first place. My pain and my experience was ignored and marginalized. The fact that I was missing at least 6 days of work every month because of 'headaches' was not worth investigating. I asked for MRIs and CAT Scans (which I had had as a teenager so I didn't press terribly hard given there had been nothing to worry about then), I asked for allergy tests and my hormone levels to be checked. 

Finally I got a doctor who did all this but he didn't follow up. The fact that I also suffered from depression and have had a number of issues with my menstrual cycle (not to mention the time of the migraines) indicated to me that I have some kind of hormonal thing going on, but again my doctor trotted out his trusty mantra of "it's just the way your body works". It wasn't until I didn't get a period for a year that he relented and referred me to a gynecologist that I started to think maybe, just maybe I could get to the bottom of my wacky lady-system (still assuming, I'm no doctor, that the migraines were tied up in all that). 

The doctor I was referred to put me on a progesterone booster to try and jolt my body into a period (he made some really fucked up comments to me, too, and didn't listen to anything I had to tell him about my history or about the tests that I'd already had done but, hey, no big deal having an internal ultrasound done twice within a couple months for no reason, right? Just a plastic stick stuck in your vagina by a stranger while you watch on a screen. Nothing uncomfortable there). He also gave me a few months supply of the birth control pill (along with advising to start taking it on a Sunday so that way I'll "never get my period on the weekend" -- woohoo, party!) as a way of regulating my cycle.

So back in April, I took the progesterone for 2 days. On the third day, while I was at work, a section of my field of vision disappeared and I had trouble reading. This quickly lead to not being able to speak words, at all -- like complete gibberish (that video of the reporter at the Grammy's? Yeah...) and that quickly lead to Rebekah packing me into a cab and getting me to the hospital. They thought I was having a stroke, I thought I was dying from whatever happened to Nate in Six Feet Under... It was fucking scary and horrible and it turned out to be a goddamn migraine brought on by the progesterone. Terrible. That doctor should have known better, he should have known not to give that to someone who gets migraines. Same with the BCP, which increases the chances of stroke for women who suffer from migraines. 

The good thing that came from thinking that I was dying and from seeing that terrible doctor was that the neurologist at the hospital talked to my GP and arranged for me to be referred to another neurologist so that my migraines could be monitered and dealt with. I started crying when the hospital neurologist told me that; when she took me seriously and said that I shouldn't have to live under the shadow of the next migraine. 

I had gotten so used to people, not just doctors, rolling their eyes at my 'headaches'. Used to employers clucking their tongues and insinuating that I was faking it or that it wasn't so bad, used to the frustration of friends when I have to duck out on another special event. I had become so apologetic and ashamed of my problem that even now I shy away from calling it an illness, that would imply severity. 

Having validation for my suffering was a huge step forward for me and for how I view the migraines. It has kind of renewed the fight in me, while at the same time given me a certain peace. 

My new neurologist has me on a medication that I have to take everyday. It's used to treat bi-polar disorder but for whatever magical pharmaceutical reason it's working for me, too. I only get migraines now at the end of my period. It's incredible, my life is changed. 


  1. My heart goes out to you -- I've been getting migraines since I was a wee thing, about 7 or 8 years old, and I'm now 47. (Almost 48 - I keep forgetting I have a birthday in a couple of weeks.) Mine aren't usually as severe as yours, although they were like that when I was an adolescent. In my 20s and 30s they were less frequent but more severe. As I approach menopause, they've begun to get worse again.

    Anyway, I didn't want to write about me, just to encourage you to keep trying, keep working with your health care providers and pushing them to try different treatments. As I'm sure you already know, there's no cure, but different treatments work differently for different people. Botox injections have been miraculous for some, but didn't work for me. Topamax worked great for me for a couple of years, then petered out. I was off it for a year, and now on it again, and it's working great after a break.

    Like most migraineurs, I've read a lot about migraine over the years, as I'm sure you have as well. One of the most helpful texts ever is Carolyn Bernstein's book, The Migraine Brain. If you haven't already got it, I highly recommend it.

    Best wishes.

    (Found you via Feministe's Shameless Self-Promotion Sunday, by the way)

  2. I'm happy that your migraines aren't as frequent/bad as they were before - but you still don't really now what exactly causes them, right? That must be pretty frustrating :(
    I find it fascinating (and kind of frightening) that there are so many illnesses science just doesn't understand, especially (chronic) pain 'attacks'.

  3. Hi Anonymous! Thanks for the words of encouragement and for the recommendation of Bernstein's book, I will definitely check it out. I'm really sorry to hear that you also suffer from migraines, and since you just a small child! That must have been so terrible and painful.

    I'm on Topamax now, and it's working pretty well, just not so great around my period but I can handle that. I've also found that my body adjusts to treatments pretty quickly which frustrates me to no end.

    I'll talk about it further in other posts but it's taken me such a long time to even accept that the migraines aren't my fault and that they're actually a serious problem so I feel like I'm barely getting started in terms of truly taking control of my treatment. I'm looking forward to looking at The Migraine Brain.

    I hope you have a happy, migraine-free birthday!

  4. Hi Cluisanna! I really appreciate your kind words and encouragement! I usually have a pretty good idea of why I have one when I do, like this week I had one because I was between refills of my meds, it was the end of my period and the weather was all over the place (sunny/rain/sunny/cloudy/rain UGH!) . It's more frustrating that there is nothing I can do once I've got one.

    There is so much that we don't know about the human body, about what causes pain and ailments, and all that lay people can really do is just have compassion for those that suffer from things that medicine doesn't have a ready answer for. Really, I think I'm lucky because enough people have had migraines or even just really bad headaches that not many people doubt that they're painful.