Quick Medical Update
Dec. 16th, 2020 01:10 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
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.
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.
no subject
Date: 2020-12-16 09:48 pm (UTC)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.
no subject
Date: 2020-12-16 10:01 pm (UTC)And, yeah, I don't expect any miracles. Some mitigation would be lovely, that's all.