What it is like for me living with chronic migraine.
Where to start, well it sucks first off but that’s a little bit too general of a statement for any practical use. Let’s try this instead; I’ll start with describing my day without a migraine. First I wake up and do a quick self-assessment to make sure I can get out of bed without feeling like someone beat me with a stick half the night or make it to the foot of the bed without needing to support myself on the foot board or dresser. If that checks out okay I’ll slowly swing my feet over the side of the bed being careful not to move my head too fast lest I trigger a migraine. If that works out well I’ll stand up and proceed downstairs to use the bathroom, remembering not to turn on the lights because they are far too bright this early and could trigger a migraine. After that it’s off to the kitchen to turn on the LED light above the stove while facing away so as, yep you guessed it, not trigger a migraine. Once I have established that I can indeed tolerate light again it’s back to the bathroom to turn on the light, run a sink full of hot water and shave, brush my teeth, apply deodorant carefully chosen so that the smell doesn’t trigger a migraine. Then it’s back upstairs to dress for the drive to work. No problems there right? I wish! Now I have to worry that bending over and rising back up might trigger a migraine. Then load my pockets with the usual, wallet, keys, pen, phone and strap on my watch with the built in barometric pressure sensor so I can confirm when the barometric pressure changes. Note that I said confirm, not check , as I’ a pretty decent barometer myself. You see barometric pressure is one of two of my primary triggers for migraines. What about all those other triggers you ask? Well those might cause a migraine, sudden barometric pressure changes almost always do for me. The other trigger, we’ll get to that in a bit.
Now let’s head out the door right? Um, not yet, first I have to check that my migraine bag has all the stuff I might need today. You know the usual, some over the counter headache pills that might work if I catch a migraine early enough, two different types of abortive medications I’m prescribed, noise canceling headphones, extra pair of sunglasses, loads of ear plugs, a sleep mask customized to ensure complete darkness when worn, a tablet loaded with apps for tracking weather and one app for logging my migraines, my e-reader because it fits but is no use during a migraine and a charger which fits both and some water. This bag goes everywhere with me and I am never more than a few minutes’ walk away from it. I also carry a small amount of those abortive’s in my pocket just in case. This bag is set up so that I can find anything I need, even in the complete darkness I spend so much time in.
Okay so finally out the door and thank goodness its winter and the sun is still below the horizon otherwise I would have to put on my primary sunglasses which have a foam gasket around each lens. They weren’t designed for migraineurs such as me; they just worked out to be effective for me. Why the sunglasses you ask? Well you remember that other primary trigger, yeah daylight. It turns out that our star if you are unaware is quite bright. So bright in fact that even on an overcast day you won’t see me outside without my sunglasses. Now the downside to it still being dark is that I will need to put up with some of the painfully bright new headlight designs, but since they only last a few seconds I can tolerate them pretty well.
Well I’ve finally made it to work and my office, in which I have deactivated half the bulbs in the fluorescent light fixtures. Why you ask? Simple really, fluorescent lights can trigger a migraine for me. After getting settled in I will eventually have to go out and face the rest of the place I work. A place filled with loud noises, more fluorescent lights, barometric pressure changes and strong odors/scents. Yeah the last one, strong odors/scents can trigger a migraine for me. Ever run into some young guy who used too much body spray; or a woman who has no understanding of just how obnoxious bathing herself in perfume can be? Well if I run into one of those individuals it can be a disaster for me. Actually I don’t even have to come in contact with them; just stepping into an elevator they just vacated a floor away can be enough. There are offices filled with air fresheners, potpourri and a thousand other scents which can trigger a migraine.
If I have successfully made it through a full day of work without a migraine I count it as a small victory in a very large battle. Now that I’m home I am relatively safe from harm as most of my potential triggers have been eliminated, except of course for barometric pressure. If any of you have a way to avoid that which doesn’t require a wearing a 1.2 million dollar, 530 pound hard shell diving suit please let me know, I’m out of ideas at this point. Almost all the lights in our house are LED except for seldom used or low wattage incandescent lights. There are zero CFL’s as they are just as bad as their full grown counterparts. I have also taken the precaution of applying window tint to all the Southern and West facing windows to prevent the need to wear sunglasses indoors. I’m not sure if you have ever noticed this or not but the barometric pressure will usually drop a bit in the evening, just a touch. I noticed, in fact I notice this almost every evening. So when I feel that all too familiar feeling I will reach down to my migraine bag and take a couple of the OTC meds just in case. They might work, they might not, no way to tell.
After all the usual bedtime routines I add one more. I take a dose of a prescribed anti-depressant. No I don’t suffer from depression but it is common among migraineurs like me. I take this in what is known as “off label”. A fancy way of saying it wasn’t created to treat migraine but someone noticed that if had the effect of reducing the frequency or severity of migraines. I also receive 24 injections of Botox every 12 weeks in my head and neck, mostly head as only two are in my neck, for the same reason. Now I try to fall asleep at or very near to the same time each night and have an alarm set for the same time each day, every day to include weekends. If there is one thing a migraine brain craves it is consistency, see barometric pressure above.
This, for all intents and purposes would be a migraine free day for me, no pressure right? Well no pressure except I have to constantly take all those potential triggers in to account all day, every day, every week, every month and every year. There is no vacation from chronic migraine; there is no day off from it. There is only living with the constant fear of one happening, even just after you’ve had one the first thing you think about is when will the next one happen. When will it again strike me down, take out of my life for an unknown amount of time? The only answer is, I don’ know. I am often asked by my manager if I will be at work for a certain event and the only honest answer I can give is that I plan to be but I cannot guarantee I will be as there are far too many confounding variables to account for. There is no way I can honestly say with any degree of certainty when I will have another migraine. This is an everyday occurrence for me, not just an unfortunate occasional interruption in my life that I can quickly move on from and forget about.
Now how about a day with a migraine.
Where to start here…. Well most of them start out just like the above description, unless I’m waking up from a migraine, but we’ll get to that. For now let’s say one started around late afternoon. In that case I would be at work and it was most likely triggered by sudden barometric pressure change. I will open my tablet and start the log and take some OTC meds or an abortive. Now I have to let my boss know I will be leaving for the day and will most likely be out the next as well. Why the next day? Well if you are unaware a migraine generally has four phases beginning with the Aura then moving to the Prodrome phase and progressing to the migraine or headache phase, followed by the Postdrome Phase. Don’t worry I’ll be describing these as we go along. I’ll start with Aura, I can’t speak for others but I seldom get much in the way of this one before a migraine, just some symptoms during the migraine phase. Some see flashing lights, I do during the migraine phase, others see squiggly lines, while others get tunnel vision or even lose sight altogether during a migraine attack. Sometimes I will start to lose focus of my distance vision in my right eye, most other times, nothing. During the Prodrome phase if I catch it, I feel pressure on the sides of my head which begins to creep towards the front. If I notice this I will take some OTC meds and hope they work, but sadly they usually don’t, which means I need an abortive and I need to log these in the app.
After leaving work I start driving home, I probably shouldn’t but the need to get somewhere quiet and dark overrides any safety concerns I would normally have. During the drive every noise is amplified by what seems 100 fold. Vibrations from the road or engine in my own vehicle create low base reverberations which feel like jackhammers on my skull. Those straight piped diesels some people love feel as if they will split my head wide open. Heaven forbid a large straight piped V-Twin motorcycle comes along, kill me now please. This is in addition to the throbbing pain inside my head already that is the normal part of a migraine. As soon as I arrive home and walk inside I start shedding clothes all the way to the bedroom. I place the custom cut cardboard plugs into the bedroom windows to seal out the light, any light no matter how minuscule. If I haven’t yet started the log on my tablet, I do so now and note the time I took the abortive medication because I will likely need another dose in a couple of hours. I lie down on the bed, find the softest pillow on the bed and try not to move because doing so only makes the pain worse. My wife wants to check on me, she touches me to reassure me and try and take away my pain but in doing so only makes it worse. How you might ask? Well it’s all due to one of many migraine comorbidities; Cutaneous Allodynia, which makes the simple act of being touched by someone only trying to comfort you, as painful as a belt sander with 36 grit paper on it abrading your skin. She means no harm by this and I try not to make her feel bad for it, I don’t succeed.
Now I settle in for the long haul. I’ve had migraines that only lasted a few hours and have endured one which lasted for 45 hours and was only terminated by a trip to the doctor and a Toradol shot. I find a little humor in the fact that when my brain hurts so bad I want a shot to end the pain, they give me one in my butt cheek. What happens next depends upon the level of pain I suffer. According to my migraine logging app my average level of pain over the last two years is 3.4 on your normal 1-10 scale. Not bad you might say, that is until you learn that that is over a total of 156 separate migraine attacks with 179 attack days. What’s my record high you ask, 10, yes 10 and no I’m not kidding. That one had me in an emergency room begging for a Toradol shot and by begging I mean the literal definition of the word and no I have no shame in admitting that. I walked into the ER flung my ID to the woman at the reception desk, fell to my knees and begged for the shot which would hopefully end my pain. A pain that felt as if someone was trying to inflate a basketball behind the bridge of my nose and were just about to succeed. Did you know that if you fall to the floor in an ER you get a room right away? Don’t try that for a sprained ankle they’ll just kick you back out to the waiting room, but back to the migraine in progress.
Let’s say it’s a little over average, say a five. When it gets to this level I know no matter what I’m in this room for at least four more hours, my average but probably six. As I said I try not to move but it’s no use, once I find a position that is tolerable, my migraine decides I shouldn’t be comfortable and I now have to move. Moving again makes the pain worse but it has to be done. I just hope in doing so I don’t blow chunks due to the nausea. I’m lucky I guess as this is a very rare occurrence for me, for some migraineurs it’s not. Still I keep a small dustbin lined with a plastic bag next to my side of the bed just in case. If I’m lucky at some point I will fall asleep, unbelievable as it may sound I can sometimes sleep through the pain, sometimes it’s the only way I can deal with it. When I do I am often awakened when the migraine phase ends. I make note of the time on my app if I can, if not I try to remember for tomorrow as I’m usually so beat down and tired that it’s best not to try.
So now I have survived the migraine phase, now what? Well as Yogi Berra said “It ain’t over till it’s over.” While I can’t say for certain he was talking about migraines, it sure sounds like he was. We have now entered the Postdrome phase, the last one. Doesn’t sound too bad right, Postdrome, I wish. For me the Postdrome last about four hours for every one hour of the migraine phase. Yeah about that 45 hour migraine….. Anyway, this phase consist of me feeling like someone beat me with a stick during those previous four hours or so. I feel as though every muscle in my body has atrophied and it takes every ounce of strength I have just to get out of bed. The walk downstairs is like trying to swim up the Mississippi during a flood. I flop down on the couch and try to remain coherent, no easy feat as my migraine addled brain could barely follow the plot of Green Acres at this point. After a little while of sitting I think I can get up and do something normal, like maybe make a sandwich but as soon as I stand I realize that’s not the case. For an average four hour migraine I will continue to feel like my brain functions are running about a fast as a herd of turtles through peanut butter for the next 16 hours. I will lack the strength to simply walk to the mailbox and check it even though the round trip is much less than a quarter of a mile. The consistency my migraine brain craves is now thrown out the window. My sleep cycle is thrown off, my regimented life is no more for now, which will likely lead to more migraine attacks.
This is just an average migraine attack for me, others are better or worse but almost none are the same as the last one. And this is just my migraine; some people have it worse than this, others not as bad. See that’s the thing about migraines, nobody’s migraine is exactly the same as someone else. Nobody’s migraine treatment is the same as someone else. Sure there are similarities such as the phases of a migraine attack, but as you have learned about mine, they don’t even follow those. That’s what makes living with this chronic illness so difficult. The not knowing which way it will go or how bad it will be, let alone when or if an attack will end. Living with this illness creates stress which contrary to popular belief does not cause migraines but will exacerbate them and leave you on a knife edge. I mean how are you going to avoid barometric pressure or walking into a cloud of fumes you can’t sense until it’s too late? Forget about going to a loud concert or an amusement park as you can wind up seriously regretting that decision. It’s constantly weighing positives and negatives, pros and cons to see if the end result is worth the price of admission. It’s like playing the world’s worst lottery where then only prizes are either kind of good or horribly, terribly bad.
There is a popular theory by Christine Miserandino www.butyoudontlooksick.com called the spoon theory, visit her site, it’s an eye opener. A young lady with Lupus (and you thought this was bad) describing to her friend what it is like living with chronic illness. It does an excellent job of relating what it is like to live like this, a much better job than I can do. What most people don’t know is that according to the World Health Organization migraine is the sixth highest cause worldwide of years lost due to disability. They even go so far as to describe it as being as disabling as quadriplegia during a migraine attack. Think about that for a moment, I’m someone who has complete control of all my limbs yet the W.H.O. considers the illness I have to be just as bad as an injury or illness that leaves someone with no control over those same limbs.
All of this might make you wonder how I or someone like me does it, how can I live like this. I must have superhuman resolve or strength to survive like this. No I don’t, I’m no stronger than anyone else who lives with a chronic condition. I live through this only because I have no choice, honestly as I said before there is no walking away from this. There is no reset button in this game, no way out win lose or draw. The best I can hope for right now is to string a series of days together and enjoy them as best I can. I can also hope that one day soon someone will find a cure for this and that it will work for me. Until then I keep trying, keep living in the spaces in between, keep hoping for the future and living as much as I can, when I can because it’s the only life I have, the only choice I have.