A question of debilitating migraines

When I have a migraine, it feels like someone already IS drilling a hole in my head. Not sure I'd actually let them, though.

I wouldn't have survived in medieval times.

They're pretty sure I get a (mild but still horrid) form of cluster migraines. I've had one silent migraine (during puberty and I ended up losing all vision in the center, like opposite tunnel vision) and then only a few "classic" migraines, usually associated with different illnesses (Lyme and mono, both within the last few years). I'd take that kind over the cluster, though.* The only nice thing about the clusters is I know they'll happen in late September until early November, and they start between 5 and 6pm every time, and they only last 4-6 hours. While they last though, what exquisite pain. It's like all of the pain from the full day-long migraine mushed into a few hours and one side of my head. My right eye starts tearing up horribly and swells up until the headache diminishes. Medicine doesn't help. When I feel the tightness in my head along the right side that means one is coming on, I take max doses of ibuprofen and Tylenol before pain-induced nausea sets in. Once the pain proper starts, I take Benadryl until I fall asleep. The amount of time Benadryl knocks me out for is about the length of a standard cluster migraine. If I can't take Benadryl and sleep, for whatever reason, I'm usually reduced to a moaning puddle of human until it stops, crying from the eye all the while. I absolutely can't function in the depths of one of these, and if life-threatening situations loomed I might just let it happen. I know they'll end shortly, but each time they start I want to die just to end it. I also will rig an eye patch that puts pressure back on my eye and socket, which seems to help.

I didn't start getting these until a few years ago. Given the seasonal nature, we first thought they were just allergies. I thought the first year was bad, but the second year made the first look like a cakewalk. Luckily they haven't gotten worse since then, but it ticked enough boxes that, despite the fact that women usually don't get clusters, my doctor is pretty certain that's what's going on. I only get 3-4 a year, though, which is really getting off easy with these. I don't know if that's related to the fact that this type of migraine seems to hit men more and worse, or if I just got lucky. Given that, we don't treat them with the oxygen or anything else a more chronic sufferer would need. Also, since antihistamines knock me out very soundly with only a normal dose, I just take a normal to slightly high (but not dangerous) dose and it doesn't fix the pain but it does put me to sleep. I did realize last year that I spend all of fall in a state of mild dread waiting for that tell-tale tightness. It's very distinct, feels like my head is in a vice but with no pain, and very much only on the right side of my head. After 30-60 minutes of that, the headache strikes. The best description I've seen for a cluster headache was actually an image of a tiny demon trying to rip someone's eye out or tunnel behind the eye into the skull, and it's a perfect way to explain what I feel when I get these.

*I'm not saying clusters are worse than other forms of migraines in general. Just that, for me and the way they present, the pain in a cluster migraine is much more intense than the more usual variety. My mom's had chronic non-cluster migraines for years and I think I would keep my clusters over her migraines, if I had to pick.

For anyone interested, the Migraine World Summit is on this week.

There's a couple of interesting links in the articles (including to the Summit website).

Bleurgh. That zigzag crescent made me feel sick.

You've got plenty of info here already, but I'm just chiming in to say that the severity varies hugely, and you can set your character's migraine severity level pretty much wherever you want. In this thread you've mainly heard from people who get the really serious stuff, but there are milder forms. I'm lucky. I've had migraines since I was a teenager, but I get them maybe every two to three months. I get the crescent aura, and if I can, I instantly throw back a couple of ibuprofen and sleep for an hour or two. Then I'm slightly fragile and headachy and spacy for the rest of the day, but completely functional.

If sleep isn't an option, I can keep going through them. It's toughest for the first half-hour or so: I can't see anything because of the aura (mine spreads from a tiny patch till it fills up basically my whole field of vision, and then gradually shimmers away), my eyes are so light-sensitive that I just want to keep them closed, and I'm also tense and pretty unfocused - it's harder to have a sensible conversation. But in an emergency, I'm pretty sure the adrenaline shot would override all that to the point where I could function effectively. My decision-making skills wouldn't be as good as usual, but they'd be there. And I'd be a lot clumsier, since I wouldn't be able to see what I was doing properly.

After the aura goes, my head hurts - mainly right above one eyebrow - but the pain is manageable (this is with ibuprofen on board - I'd rather not find out what happens without it). I'm still light-sensitive and spacy, but less so. If I don't manage to get that sleep, this phase lasts the rest of the day.

I used to get the nausea and vomiting when I was a teenager, but it seems to have faded so that now all I get is mild nausea. Touch wood.

I've done a pretty large role in a show through a migraine, I've done a full dance class, I've wrangled a toddler, and I've found my way through a strange city to the airport and onto my flight. None of those were fun or easy, but they were all doable.

The biggest way they could sideline things is that, in that first half-hour, there's no way I'd be able to drive. No matter how urgent it was. I'm pretty close to blind.

I feel lucky that I don't get the auras so many of you have described! I become sensitive to light and sound, to the point where I'll fold up a pillowcase and drape it over my eyes to keep the light out. But no auras. I am surprised that so many have reported their migraines recurring in the same place. Mine are always in different locations. Sometimes behind my eye, sometimes above an eyebrow, sometimes at the back of my head, or even deep inside. I tried explaining to a doctor once that my migraines were INSIDE my head, not on the periphery, just under my skull, but actually inside, where my brain is. He acted like he thought I was crazy!

Personal anecdote that I forgot to mention earlier: One time, when I was 17 or 18, I was out with friends and got a migraine so bad, I wasn't able to drive home. I had to have one of my friends drive my car (and me) to my house, and then one of my other friends picked her up. It was embarrassing, because I felt so useless. Not only did I ruin everyone's fun, but I inconvenienced my friends by needing a ride home.

I also have horrible migraines. Mine are almost daily. They range anywhere from just feeling like a headache is coming on (which I call "twinging" and is actually what I call not too bad) and go up to the point where I'm actually getting sick. I have three different medications for them depending on the level I'm at. I even have Imitrex injections to take when I am the top level as well as nausea pills.

Sadly, many do still believe it's just a "bad headache" and have problems saying so or think you're trying to gain attention when you say you have a migraine. I called off once because I was getting sick with a migraine and my boss called me to his office the next day and tried to make me feel bad for calling off. His tone when he said "migraine" was flat like he thought I was faking proved he had no sympathy. Sad thing is his family owns a nursing home. His mom is the facility doctor. I have gone to work with migraines to the point where I'm crying. I was sent home that day because the nurses knew I couldn't function as an aide. Your question about doing what must be done despite my migraine is what I do. Despite my migraines, I still have to work to pay my bills and put food on the table.

Sadly, migraines is the least funded neurological diseases. It's truly hard to express the true pain of a migraine. Those who don't have often mistakenly say, "I had a migraine." No. You had a bad headache. There is a clear difference between a bad headache and a migraine.

I used to get strange migranes, with no warning or identifying trigger. Starting with not wanting breakfast or even a cup of tea. I found out the hard way that the only thing to do was to get a bucket to vomit into and a large jug of water, lock the front and back doors, go back to bed and say goodbye to the world for three days (exact.)
Lying in the darkened room, the zigzag pattern soon went, the headache was not bad, but the stomach tubes really did seem to turn inside out! After the second day it lessened and on the third day I returned to normal life totally cleaned out, having thrown up most of the water.
And you are right - one is totally helpless and vulnerable, unable even to answer the phone or door and basically on a different planet completely. Apart from the house going on fire you just don't care about anything but the next heave. It must be like coming off drugs.
The coming back to life is wonderful though.

I haven't read other replies for fear of actually stressing myself into getting a migrain so I might be repeating stuff.

For me, it starts with the 'aura', sort of like when you look at camera flash or into the sun, and there's a void in your vision. But it pulses, so it's like a camera flash after image had a baby with a dopplar radar. The aura Usually starts in the upper left of my vision and travels down across my sight. I can't focus, see, or read.

I take two tylanol, drink lots of water, and go in a quiet dark room to relax and try and sleep.

Then the aura fades and the headache comes. Sometimes it's at the back of my head, sometimes the front. I get hot flashes, sweat, and nausia. Sometimes I vomit. Sometimes my hands or fingers go numb. I just try and wait it out. Usually a day after I'll have a faint headache or feel hung over and try to avoid screens.

I hope that helps.

stitchingirl said:

Sadly, many do still believe it's just a "bad headache" and have problems saying so or think you're trying to gain attention when you say you have a migraine. I called off once because I was getting sick with a migraine and my boss called me to his office the next day and tried to make me feel bad for calling off. His tone when he said "migraine" was flat like he thought I was faking proved he had no sympathy.

Sadly, migraines is the least funded neurological diseases. It's truly hard to express the true pain of a migraine. Those who don't have often mistakenly say, "I had a migraine." No. You had a bad headache. There is a clear difference between a bad headache and a migraine.

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The really sad thing is, most of the time when I read migraine/headache disorders depicted and mentioned in books, the vast percentage of the time, it is through the main character lying about having a headache to get out of doing XYZ. Very rarely is it responsibly depicted as a debilitating disorder. This irresponsible depiction, of course, floods media with the idea that any time someone has a headache, they're lying about it to get out of doing something. (I kid you not, this stupid line has been in at least 1/4 of the books I've read in the last few months.) And of course, then if you are actually someone with chronic migraine/a headache disorder, you suffer the consequences with your boss, your doctor, or whomever when you're telling the truth and can't get anyone to believe you.

I haven't had a migraine in a long while, but what used to bring them on for me was overly bright light, pulsing light, or the rotation of ceiling fans (not sure why that was a trigger, but if I looked at one for too long I'd start experiencing halos at the sides of my vision, visual disturbances and a humming sound in my head, followed by head pain, nausea and, sometimes, vomiting). A dark room and Ibuprofen usually worked to alleviate the pain, but it usually lasted a few hours...