here's the thing that drives me crazy every single time we go through this kind of crisis: the answer to the question is "Does anyone know WHY this happened?" is also "No." Likewise, "does anyone have a clue what this even *is* or if there is something to be done about it," is also still, "No."
Western medical science! *JAZZ HANDS* That drives me SO BUGFUCK. "Well, you don't have X, Y, Z! Sadly we have no idea what you do have so we're going to insinuate it's all in your head and send you back home, come back later if you feel crappy again. Bye!"
A migraine EVERY DAY? JEEEEEEEESUS. I have had near-monthly migraines since I was a kid (when I was a kid I thought they were "bad headaches" that just weren't touched by painkiller, hah) and I would fucken burn down the Harkness Pavilion if I had them every day. Shawn must have the pain tolerance of a Union soldier who has had multiple surgeries.
if friends of mine out there have migraines (even if they don't seem as serious as the ones I'm describing that Shawn has) I would love to hear what people do to try to mitigate them? Like, do you have special eye masks? Do you know if you have food triggers (I've heard about chocolate and red wine, is that true for you/your friend/relative?) Do you do anything to help stress that might trigger migraines? Seriously, talk to me about your headaches and migraines, I'd like to start to compile a list of things for Shawn to TRY.
Okay, it does not sound like my migraines are ANYWHERE NEAR as bad or as frequent as Shawn's, but this is my input from about 40 years of living with them:
This might have happened already, but the very FIRST thing I would do is see if Shawn can get a head and neck MRI. It sounds like she's already seen a neurologist (I haven't read back to see if this has happened, apologies if this isn't a good suggestion). Just to make sure there isn't some physical wossname (endogenous?) cause. If Shawn hasn't had an MRI in the past 3-5 years or so, it might be worthwhile trying to get another one. And Shawn may have done this already, but a really good thing to do with all that data she's collected is try to graph it. (It's easier to do this if it's in an Excel doc to begin with or something similar.) Have the migraines increased and all or decreased over the past several years? Do they get set off at certain times of the year? Do they seem at all connected to menstrual periods or whatever? Are there any patterns whatsoever, because it sounds like that's what's really frustrating right now.
I have really specific triggers. (A lot of my migraneur friends do not.) I am very prone to headaches which can turn very easily into migraines and leave me down for the count for several days, so I'm really cautious about certain things, which probably looks OTT or even comic to someone else. My reliable triggers are getting too little sleep, going for too long without food, having glare in my eyes/being under fluorescent lights/in very bright spaces, eyestrain/too much time looking at screens, and high summer temperatures. There's other stuff that can cause headaches too, but those are mostly chemical: harsh fertilizer, perfume counters at dept stores, fresh paint, weedkiller, &c &c. I got allergy tested and was told there was Nothing! Wrong! (bah), but if Shawn hasn't had allergy tests already, it might be worth trying those. I also have had really bad chronic sinusitis over the years, and that can be connected to migraines. I don't have food triggers per se. If I can get out of the situation (escape into A/C, leave the office with fresh paint, eat something) and cut the migraine off before it gets to a certain point, I might be stuck with "just" a terrible headache or a weird-feeling migraine aura, but at least I won't be full-out writhing in pain. (Another thing Shawn might suss out from all that data is whether or not she can feel migraine auras -- it's really hard to describe them -- they can involve the flashing chessboard and neon blobs, which I get, or feeling really dizzy or disorientated, or very nauseated -- but if you can learn to kind of sense them, like animals feeling earthquake vibrations or something, you have a fighting chance of cutting off the migraine, or at least I do. But some people never get them at all, and some people get the auras without migraines. SCIENCE.)
I am lucky in that unlike a lot of my friends I don't have to take really high-power painkillers (altho docs have suggested I probably should). If I get on top of the migraine IMMEDIATELY by taking four or five Advil (I know, I know), plus drip coffee (tea is also supposed to be good for caffeine but it doesn't work for me), or a latte, that helps immensely. Aromatherapy is also very helpful for me -- I use TKO by BPAL which is pretty much straight lavender/vanilla. Some of my friends swear by weighted lavender-scented eye masks which you can keep in the freezer, or those blue gel ones. Aromatherapy can work as a kind of reverse trigger because when I smell lavender, I associate it with relief, and then feel better. Cold showers really help me. (In one essay, Joan Didion describes emptying freezer trays of ice cubes onto her pillow.) This doesn't mean the pain goes away immediately, or even goes away fully, but it at least becomes manageable and I don't have that awful period of just lying in bed in the dark feeling immense pain where I'm just stuck helplessly riding it out. So I guess this is more about managing the condition, which it sounds like you wish you and Shawn could do right now, if you can't get answers from doctors about a treatment or a cause. A big thing I have heard from friends with terrible chronic pain is EARLY ACTION. Whatever works, if you can do it FAST, when the symptoms start happening, it's a lot easier to get on top of the pain.
The other big trigger for me is I get menstrual migraines, and those are a lot worse, a lot harder to stop, and a LOT more painful than even regular migraines. They also get worse with my hot flashes, yay. So sometimes hormones and other bodily systems can be triggers too, apparently. A lesser cause for me is I am a "clencher" -- I don't grind my teeth in my sleep but I constantly clench my jaw without thinking, all day long, and it causes TMJ and muscle pain and probably at least ups the chance of migraines. It might be worth thinking about a dentist that could check for misalignment or TMJ or other possible sources of facial tension, if Shawn hasn't seen one already. Sometimes if the pain is really bad I take a Benadryl because I can get into this bad feedback loop of tensing up which worsens the pain so I tense up more, round and round, and if I can get myself to relax, at least I feel better. I got a white noise machine recently and was really surprised how much better I felt after having it on as background for an hour -- I wasn't all hunched up with stress and I wasn't clenching my jaw.
Of course, there are also numerous times when I haven't been having my period and it's nice cool weather and I'm properly caffeinated and slept all night, and BOOM, the migraine shows up anyway, who knows why. Sometimes they're like a poltergeist inside your skull.
Anyway that's all kind of 101 and I hope at least some of it helps, and my deep sympathies to Shawn (and you). Migraines SUCK.
no subject
Western medical science! *JAZZ HANDS* That drives me SO BUGFUCK. "Well, you don't have X, Y, Z! Sadly we have no idea what you do have so we're going to insinuate it's all in your head and send you back home, come back later if you feel crappy again. Bye!"
A migraine EVERY DAY? JEEEEEEEESUS. I have had near-monthly migraines since I was a kid (when I was a kid I thought they were "bad headaches" that just weren't touched by painkiller, hah) and I would fucken burn down the Harkness Pavilion if I had them every day. Shawn must have the pain tolerance of a Union soldier who has had multiple surgeries.
if friends of mine out there have migraines (even if they don't seem as serious as the ones I'm describing that Shawn has) I would love to hear what people do to try to mitigate them? Like, do you have special eye masks? Do you know if you have food triggers (I've heard about chocolate and red wine, is that true for you/your friend/relative?) Do you do anything to help stress that might trigger migraines? Seriously, talk to me about your headaches and migraines, I'd like to start to compile a list of things for Shawn to TRY.
Okay, it does not sound like my migraines are ANYWHERE NEAR as bad or as frequent as Shawn's, but this is my input from about 40 years of living with them:
This might have happened already, but the very FIRST thing I would do is see if Shawn can get a head and neck MRI. It sounds like she's already seen a neurologist (I haven't read back to see if this has happened, apologies if this isn't a good suggestion). Just to make sure there isn't some physical wossname (endogenous?) cause. If Shawn hasn't had an MRI in the past 3-5 years or so, it might be worthwhile trying to get another one. And Shawn may have done this already, but a really good thing to do with all that data she's collected is try to graph it. (It's easier to do this if it's in an Excel doc to begin with or something similar.) Have the migraines increased and all or decreased over the past several years? Do they get set off at certain times of the year? Do they seem at all connected to menstrual periods or whatever? Are there any patterns whatsoever, because it sounds like that's what's really frustrating right now.
I have really specific triggers. (A lot of my migraneur friends do not.) I am very prone to headaches which can turn very easily into migraines and leave me down for the count for several days, so I'm really cautious about certain things, which probably looks OTT or even comic to someone else. My reliable triggers are getting too little sleep, going for too long without food, having glare in my eyes/being under fluorescent lights/in very bright spaces, eyestrain/too much time looking at screens, and high summer temperatures. There's other stuff that can cause headaches too, but those are mostly chemical: harsh fertilizer, perfume counters at dept stores, fresh paint, weedkiller, &c &c. I got allergy tested and was told there was Nothing! Wrong! (bah), but if Shawn hasn't had allergy tests already, it might be worth trying those. I also have had really bad chronic sinusitis over the years, and that can be connected to migraines. I don't have food triggers per se. If I can get out of the situation (escape into A/C, leave the office with fresh paint, eat something) and cut the migraine off before it gets to a certain point, I might be stuck with "just" a terrible headache or a weird-feeling migraine aura, but at least I won't be full-out writhing in pain. (Another thing Shawn might suss out from all that data is whether or not she can feel migraine auras -- it's really hard to describe them -- they can involve the flashing chessboard and neon blobs, which I get, or feeling really dizzy or disorientated, or very nauseated -- but if you can learn to kind of sense them, like animals feeling earthquake vibrations or something, you have a fighting chance of cutting off the migraine, or at least I do. But some people never get them at all, and some people get the auras without migraines. SCIENCE.)
I am lucky in that unlike a lot of my friends I don't have to take really high-power painkillers (altho docs have suggested I probably should). If I get on top of the migraine IMMEDIATELY by taking four or five Advil (I know, I know), plus drip coffee (tea is also supposed to be good for caffeine but it doesn't work for me), or a latte, that helps immensely. Aromatherapy is also very helpful for me -- I use TKO by BPAL which is pretty much straight lavender/vanilla. Some of my friends swear by weighted lavender-scented eye masks which you can keep in the freezer, or those blue gel ones. Aromatherapy can work as a kind of reverse trigger because when I smell lavender, I associate it with relief, and then feel better. Cold showers really help me. (In one essay, Joan Didion describes emptying freezer trays of ice cubes onto her pillow.) This doesn't mean the pain goes away immediately, or even goes away fully, but it at least becomes manageable and I don't have that awful period of just lying in bed in the dark feeling immense pain where I'm just stuck helplessly riding it out. So I guess this is more about managing the condition, which it sounds like you wish you and Shawn could do right now, if you can't get answers from doctors about a treatment or a cause. A big thing I have heard from friends with terrible chronic pain is EARLY ACTION. Whatever works, if you can do it FAST, when the symptoms start happening, it's a lot easier to get on top of the pain.
The other big trigger for me is I get menstrual migraines, and those are a lot worse, a lot harder to stop, and a LOT more painful than even regular migraines. They also get worse with my hot flashes, yay. So sometimes hormones and other bodily systems can be triggers too, apparently. A lesser cause for me is I am a "clencher" -- I don't grind my teeth in my sleep but I constantly clench my jaw without thinking, all day long, and it causes TMJ and muscle pain and probably at least ups the chance of migraines. It might be worth thinking about a dentist that could check for misalignment or TMJ or other possible sources of facial tension, if Shawn hasn't seen one already. Sometimes if the pain is really bad I take a Benadryl because I can get into this bad feedback loop of tensing up which worsens the pain so I tense up more, round and round, and if I can get myself to relax, at least I feel better. I got a white noise machine recently and was really surprised how much better I felt after having it on as background for an hour -- I wasn't all hunched up with stress and I wasn't clenching my jaw.
Of course, there are also numerous times when I haven't been having my period and it's nice cool weather and I'm properly caffeinated and slept all night, and BOOM, the migraine shows up anyway, who knows why. Sometimes they're like a poltergeist inside your skull.
Anyway that's all kind of 101 and I hope at least some of it helps, and my deep sympathies to Shawn (and you). Migraines SUCK.