Quick Medical Update

[lydamorehouse]

 I actually have a few things that I want to talk about on reading Wednesday, but I feel I owe everyone a separate entry about how Shawn is doing this afternoon.

She is taking the day off work, which I think is a very good idea.  She is fine. All the results came back normal--at least in terms of "did she have a stroke?" No. "Did she have a heart attack?" No.

But--and I may rant about this--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."

I understand that migraines are weird and that they have baffled neurologists for a long time. And, frankly, Shawn is resigned to this fact. She nods along when people just shrug and tell her, "Well, I guess it's just a new symptom?" 

She keeps a migraine headache journal, which would be lovely, if EVERY SINGLE DAY DID NOT SHOW A MIGRAINE. Seriously, Shawn can count on her fingers the number of days a month she is headache free, usually on one hand.  I am prone to hyperbole, but this is not one of those moments. I'm not exaggerating in the least. Shawn has had entire weeks where she's having a migraine or a rebound migraine or a cluster headache that then precedes another round of migraines.

When she had her gallbladder out, it was extremely deteriorated to the point that they had to switch from a robot guided routine removal to getting a skilled surgeon involved. After the surgery that should have taken a couple of hours, but ended up as 5 hours, the doctor said to me, "I have NEVER in all my life as a surgeon who specializes in gallbladders ever seen one in worse shape. Most people are screaming from that kind of pain. Does your wife tolerate pain?" 

I just laughed and said, "She lives with migraine pain so much she probably never even felt it."

He was honestly horrified.

And I want more people to be, you know? I woke up this morning in very much of a "I am done with all the bulls*t in the world" feeling--like ALL of it--and one of the things I am done with is shrugging off these trips to the ER. I should say, that I still think Shawn is right to go? Her instincts are good. I am NOT mad that we went? I am mad that we aren't any closer to understanding Shawn's migraines and that the answer from medical professionals is a giant "I dunno? Try living with it?" 

I should also be clear that no doctor at the emergency room told Shawn this. But, okay, what I told Shawn at lunch just now was that I would like her to start considering this problem holistically.  Okay, so the neurologist is at her wit's end, that's probably fair.  I do think Shawn could also consider trying out a migraine expert at somewhere like the Mayo as well, but you know, that may take some time to finagle. In the meantime, maybe see a nutritionist? Because we have never tried to see if there are environmental or food triggers to her migraines. Personally, if it were me, I would be checking out acupuncture, too? But, Shawn is skeptical and hates needles and it's her decision, her body. As her wife, I just want her to start thinking about other additional avenues for solutions.  

At this point, with the kind of pain she just lives with, I feel like throwing things against the wall to see what sticks isn't a bad policy?? 

/rant

The bottom line is that Shawn is FINE. If you are okay with the room being on fire as "fine.'  Which, to be fair to her and the medical profession, does seem to be normal for Shawn.

NOTE: I'm not looking for advice, per se? But, 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.

Comments

[oracne]

Owwwwwwwwwww. That sounds really hard.

[lydamorehouse]

Ah, thanks for the sympathy. I don't think Shawn gets enough of that either, so I will definitely pass that on.

[kore]

Dude a migraine EVERY DAY? If that happened to me for like a WEEK I would be at the entrance of the headache clinic with a pickaxe in hand banging on the doors. "IF I HAVE TO FEEL THIS WAY SO DO YOU BASTARDS." That is hardcore.

[lydamorehouse]

Right? And I read this to Shawn because we could also use a laugh!

[pameladean]

I saw this entry before the earlier one and I'm so sorry you both had such a difficult day, made more difficult than it should be by the pandemic, but it wouldn't have been a picnic in any case. Blargh.

I think serious expertise is a good idea.

I get migraines. Not sure my experience is relevant. To begin with, I take a beta blocker for my blood pressure. When I first began taking it, the migraines went away entirely for a couple of years. They would creep back and then for unrelated reasons my beta blocker dose would get raised and they would go away again. However, I don't want it raised any more -- it makes me feel that somebody turned up the gravity and I refused to let my doctor increase the dose a couple of years ago. Anyway, even though I do get the migraines, I don't get major pain while on them; sometimes I don't get pain at all.

I get lack of mental focus, mild aphasia, a generally very unpleasant wonky feeling, sometimes a little vertigo.

My main triggers are abrupt changes in barometric pressure, dehydration, and aspartame. I've had three classic migraines with aura and all the horrible trimmings, two from aspartame and one from dehydration after I failed colonscopy prep.

At some point I read an article about things migraine sufferers should be doing but aren't. The main one I could address was "treating seasonal allergies promptly." So I take Allegra if I get drippy, and this has helped cut down on the number of migraines. Staying hydrated or drinking a bottle of Gatorade (yuck) is also helpful. But there is not much you can do about abrupt changes in barometric pressure. Rising pressure isn't usually an issue, it's falling pressure that causes trouble.

I hope there might be a useful nugget in there somewhere. But migraines can be awfully idiosyncratic.

I'm very glad Shawn is all right for certain values of all right.

P.

[lydamorehouse]

Everything is useful!!

We've noticed the barometric pressure effect, too, so that's definitely similar. Likewise, Shawn has been trying to stay hydrated, so that's also good to know that it helps you.

Shawn is also on a beta blocker, but this stuff is happening on top of that, which is insane to me. They keep piling on more meds, including things like Gabapentin, and, like you, I kind of would like that to stop increasing--especially since it doesn't seem be working (although it could possibly explain some of these side effects. Gods only know how much of her bloodstream is actually chemicals.)

[pameladean]

Oh my God, seriously? This is all happening on top of several medications? I mean, it doesn't seem like they are doing anything. Did they ever? Would it be even worse if she wasn't taking them? It's hard to imagine but I'm hardly an expert.

The only other thing I can think of, and she's probably been told to try it too, is that I had a Vitamin D deficiency, and migraine frequency did diminish once I'd taken gigantic doses once a week for a couple of months and then made sure to take daily maintenance doses. It took a while. It was not a cure. But reduced frequency is good. Especially if you aren't getting any respite at all. That sucks so much. I'm so sorry.

P.

[lydamorehouse]

Believe it or not, she was getting Vitamin D shots, too.

This is why I am feeling really frustrated. I feel like the doctors are loading her up on all the things and not really caring that nothing seems to be making a dent.

Also, today we are back in the ER because her blood pressure is spiking.

[kore]

Oh yeah, when I started taking Sudafed regularly (Claritin and Allegra didn't help and Zyrtec worked beautifully but also sent me to sleep), using Flonase and saline sprays regularly, my sinuses got a lot better and the headaches did too.

There was a theory that migraines were caused by expanding blood vessels (hence caffeine working as a vasoconstrictor), or no there was also a theory that migraines were caused by constricting blood vessels, so take beta blockers! Or maybe anticonvulsants! Good old aspirin! Hell, bring back the stone of folly!....they have NO CLUE. They really don't. (And my theory is if men got them at the same frequency -- I think it's something like 10% for them -- this would have been SOLVED decades ago.)

[lydamorehouse]

I really did not know that migraines were a gendered issue. Our son Mason gets them, as do all the men in Shawn's family, so I assumed it was a genetic issue.

[sabotabby]

I'm so sorry she's going through this.

This is also the experience of every woman/femme/AFAB person with chronic pain or illness I've ever heard of. If they can't instantly identify it it, the doctors are all like *shrug* keep living with it, I guess???

So I have chronic migraines that don't seem as severe but I am used to it so maybe they are as bad? Here is my big list of stuff I've learned since doctors refuse to do anything, with the noble exception of my BFF (who is a psychiatrist and has nothing to do with treating migraines, but she suffers from them so she knows stuff):

Triggers! Red wine and chocolate. Tannins appear to be the key ingredient; different types of wine can be totally fine or I can have a migraine halfway through the glass. Also stress and dehydration, which is why I've only had a few days since September where I haven't had a migraine. Weather. Any pressure change and my skull goes off.

What helps:

Daytime sinus meds with pseudophedrine. This is what my BFF taught me and nothing works as well as this. It has to be with pseudophedrine though. In Canada, this is over-the-counter and easy to come by; I had some serious difficulties obtaining it in the US because it's apparently used to make meth.

Pseudphedrine is a vasodilator, so it'll open up clenched veins, which is something that happens with a migraine. Coffee is also a good vasodilator, but it dehydrates you, which is generally a migraine trigger. So when I feel a migraine coming on, I'll usually take a sinus med, two big mugs of coffee, and lots of water.

The other thing I do is use a hot compress mask like these. Mine isn't listed here but basically it's like a beanbag mask that you heat up in the microwave and then put over your eyes for 10 minutes. I'm not sure if it's connected to the migraines or not, but the oil glands in my eyes have mostly dried up and this supposedly helps.

Anyway I hope some of this is useful to her! I am hoping to get better answers myself so if I get any, I'll let you know.

[lydamorehouse]

Pseudphedrine used to be a dear friend in this house (and yes, in the US we were tracked for our pseudophed usage, thanks to meth--they literally made me scan the bar code on my drivers' license), but, sadly, they are on the list of "can cause blood clots" meds that our doctor had Shawn stop taking regularly once she had her weird one.

Which is too bad, because your BFF is RIGHT. Psuedophedrine used to help knock out some of Shawn's related pain.

I will absolutely try to get her a hot compress mask because, you know what? THAT SOUNDS NICE FOR EVERYONE. Seriously, I might use it just because it sounds like it would feel good.

The rest of your thoughts are going onto the big list. Even if they seem like they won't work, we are going to try them!

So, thank you!!

[sabotabby]

Ugh so it sounds a lot like she has the thing I have. Which sucks hard and she has my sympathies. Pseudophedrine is my miracle drug.

The hot compress mask is really nice! No idea if it works; I got it for my eye problems and not for migraines and I haven't been able to go back to the optometrist to see if it's working, but I do find that it helps for migraines as a nice side effect. Also back pain because my routine is lying flat on the ground while I have it over my eyes.

I hope some of this works.

[rekishi]

Hi, you don't know me, I stumbled here via my network page.

What you describe sounds a lot like my mom. We were sort of hoping it was hormone related, but menopause hasn't made it better. I also have migraines but they're very very infrequent.

And for her it's just as much as a puzzle as for Shawn, but there are some food triggers that have at least brought temporary relief so maybe try it? (Red wine, certain cheeses, bananas, kiwi, sometimes oranges)

What has been very apparent: If digestion is on the fritz, migraines are worse. This is less a food related issue and more a microbiome issue, so what may help is to try and change the gut fauna with stomach-acid stable bacteria. (I wouldn't suggest a poop transfer but....it's an option.)

Stress (I know, I know, hard to avoid).

Surprisingly: weather. does it happen with the same frequency if she is somewhere else for a few days/weeks?

What apparently does alleviate it some: special curry mixtures without chili but including amla (which is apparently an Indian fruit you can grind).

Medication wise: suppositories are apparently better than pills. Valproic acid, if she hasn't tried, might be indicated. Careful in case if pregnancy.

Secondarily: There's a new class of medication. I mean, I'm sure you know about it but just in case not, you want to look into CGRP antagonists. These need to be injected (because they're antibidoes), although there may be at least one oral formulation of a small molecule out there by now (here's a Nature article: https://www.nature.com/articles/d41586-020-02862-9)

I'm sorry, this is a really terrible disease to live with. :(

[lydamorehouse]

Hello! (and Welcome!)

It's good to know that Shawn's neurologist is up on the latest, because we have some of the inject-able medicine in the fridge waiting for the first of the month (Shawn wants to start it on a day she is sure to remember it, since it's monthly.) So, that's a yay!

I will pass on the rest of this because I really feel like WHY NOT!? We'll see what works for her.

[rekishi]

Hi :) One more thing:

I just saw the above advice about pseudephedrine, be careful with this in case of glaucoma where it's contraindicated as it is only a vasodilator in skeletal muscles but actually a vasocontrictor in skin and eyes. Caffeine is good though, especially very strong espresso. What works super well for my mom: espresso with lemon juice. It's disgusting but helps. Also: simple table salt, as it may be an ion pump issue.

ETA: don't expect miracles from the CGRP antagonists, they work but it will probably be more in more days without migraines not like, suddenly no migraines or very few.

[lydamorehouse]

See above comment to someone else--Shawn can't take pseudephedrine for other reasons, so no worries there.

And, yeah, I don't expect any miracles. Some mitigation would be lovely, that's all.

[kore]

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.

[kore]

Also, argh, I didn't mean to sound too advice-y there. Just trying to outline stuff that has worked for me, or that seem to be triggers for me.

[lydamorehouse]

Don't worry about it! I WANT ALL THE ADVICE. Even if it's stuff we've tried; I want it all right now. So, thank you.

[lydamorehouse]

Oh, but just so you don't worry, she's had the full contrast head and neck MRI, so that's a boxed checked!

[kore]

Oh good! And yeah, I remember having several of those, and they were ATROCIOUS. It was like being trapped in a metal garbage can while someone beat on it with a steel baseball bat.

I just remember docs (good docs) saying it's always a good idea to rule out physical problems first, altho when those are all ruled out....then diagnosis gets frustrating. A friend told me once all of Western medicine depends on correct diagnosis, and if you don't get that, you can be really fucked.

[lydamorehouse]

Your friend is really right.

[silverceri]

My sympathies to Shawn. I used to have headaches and/or migraines every day, as well. I actually quit eating gluten.

Celiacs disease runs in my family and whether or not I have it, who knows. However, I stopped eating gluten and my headaches quit. I accidentally eat gluten and I can guarantee a migraine will start within two hours.

And Celiacs disease can mimic a lot of other things as well. So maybe try cutting gluten for a month?

[lydamorehouse]

This is an interesting tidbit to add to the list. I am absolutely up for suggesting this and trying it.

[mtbc]

Someone I know who suffers chronic migraines (though not nearly every day!) is to the point of considering botox, I didn't even know that was a treatment until I checked that out. Though I also hadn't heard about daith piercings until a sufferer reported that it had really helped them in recent years, I'm still puzzled on that and the official people seem heartily skeptical. I'm afraid that I don't really know anything other than trying different triptans to see if one actually helps but I'm sure you've been down that road.

[lydamorehouse]

Shawn's brother-in-law also gets migraines and SWEARS by botox, so we've heard of it, but also feel (or felt) similarly skeptical. Personally, if I were Shawn I would be like, "Yeah, okay, WHY NOT??"

note on discussing pain with medical folks: context helps

[bibliofile]

It can be helpful if, when Shawn discusses her pain, she mentions that the gallbladder thing. Describe the convo that you had with the surgeon (and maybe even name the surgeon, if they practice at the facility where you are at the time).

Medical personnel are so inured to people who are surprised by new pain that they underrate the importance of every new-to-them patient's mention of pain and how bad it is. I saw this with a friend after her back surgery: hello, it's been four hours, she needs her next shot please, and the nurses were like okay, yes, it means a minimum of four hours, we'll get to her soon.

After my mom had hip surgery, my brother was there to advocate for mom. Mom asked for pain meds. My brother explained to the nurses that mom had given birth three times without an epidural, so when she complains about the pain perhaps you could consider that context. The nurses understood the problem better, with that info. (It probably didn't hurt that my brother is a white guy, but that's a different problem.)

Re: note on discussing pain with medical folks: context helps

[lydamorehouse]

Yeah, I think you're right that women's pain gets vastly ignored or minimized. Shawn is normally pretty good at advocating for herself. However, your advice about reminding people that she normally tolerates a LOT is very solid.

Thank you.

[j00j]

This sounds *awful* and I'm sorry Shawn is going through this and I'm sorry the neuro isn't looking into other stuff. We've really appreciated how much housemate/metamour's most recent neuro keeps working on improvement. There are a bunch of new drugs on the market! She's tried Aimovig, and is now going to try an every 3 months infusion (not sure which med this is but can find out) and Nerivio, which is not a med but an exciting cyborg nerve stimulation device you wear on your arm!
So yeah, IMO new doc.
Home care stuff: She has one of those old school rubbery ice bags, and that's good. we also got an "ice roller" you can roll on your head and neck for soreness.
Weather is definitely a factor (pressure changes) in many of the current migraines, hard to do anything about the source so we gotta treat it more effectively.

I hope Shawn can find some better relief soon.

[j00j]

oh, PT was also a help-- reducing head/neck tension.

And addressing an autoimmune condition when finally diagnosed. So like, a really good and curious GP/internist and/or a rheumatologist if the more obvious headache avenues aren't fruitful?

Since you asked

[caffeine]

Migraines suck, my sympathies.

I while ago, I was admitted to the ER for suspected Stroke / TIA. A whole night of testing and they had two possible answers, TIA that cleared up before they could find it with CAT/MRI/EKG or a new and exciting Migraine symptom. After that I added another doctor to my count, a neurologist. I like my GP, I really do, but my neurologist changed my life. Then she retired.

She said it was 60+% likely migraine, so she was just going with that, since she could do something about that. Either way, my permanent record now includes a Temporary Neurological Deficiency, which admittedly, sounds really scary.

We reviewed all of the symptoms, all the potential causes, when migraines were more likely, etc. Then we reviewed all the remedies that I have tried/prescribed. Then she changed it all.
Likely to cause: Drastic pressure/humidity changes (you know, like flying somewhere and staying in a hotel, pretty much my job prior to Covid)
Very likely to cause: drunk
Force multiplier: Stress
She said, imagine an equalizer: If X on this slider + Y on this other slider will cause it, Stress will lower those thresholds

minimum 64oz of water per day (this I was already doing)
5000 units vitamin D daily
No more Excedrin Migraine - changed out for naproxen sodium (aleve) and explicit permission to take about 4x the recommended amounts on the packaging
Then the insurance fun of having to jump through their flaming hellscape of bullshit to arrive at the drug of choice - Zomig Nasal. Snort 1 at onset, 1 an hour later
Ondanestron (Zofran) for nausea (the under the tongue, melt in your mouth version)
Ketoralac (Toradol) intra-muscular injection if it goes into a second day
Meditation (I use the calm app and meditate 4-5 times a week)
and no excess booze (drinking ok, no inebriation allowed)

I think I have about <10% of migraine days since working with her. (I still hoard the F out of my migraine meds, since a really bad one can wipe out a good chunk of my stash and Insurance only seems fit to dole it out like it is gold-pressed-latinum)