#chronic migraines suck

[ladyteldra]

I would get so much more done if I weren't debuffed by migraines what feels like all the time.

[lizzy-frizzle]

.

[b-blushes]

migraine has been bestowed upon me

[melodymorningdew]

I got my first SSI rejection letter yesterday 😌 ✌🏾 I feel official now.

[chronicallyuniconic]

im not sure if being aware of a seizure or unaware is "better" in terms of coping ability.

there's something terrifying feeling the seizure coming & hearing what your body is doing and trying to control it is impossible but you can't move so you have to lie and go through it.

there's something equally terrifying about being woken up to "you've had a seizure" but the last thing you remember is getting into bed and you can't explain why you're in the hallway.

its an impossible 'choice' and the gaslighting I'm doing to my mind to tell it to not be scared it will pass etc, but it builds like you're running from a rabid dog and you know it's gonna get you.

the last aware seizure, I remember saying to OH "I'm okay, I'm okay" to reassure them and they thought I was unaware of the whole thing but I was in and out and can remember 90% of it.

the last unaware seizure I was sat on the couch, just, chilling. Felt like I'd pass out and I'm so used to that feeling from the 18 months I was throwing up and fainting, so instinctively i lay on my left side in recovery position. Then it's just black. Nothing. Until I'm "woken" or come round, anything could have happened and I wouldn't have a clue.

now back in the waiting period of the inevitable next seizure

[the-habitat-ring]

I always want to post more about my yard on here, but I get frustrated and self-concious because my disabilities prevent me from doing everything I want to do and frequently derail my plans. I do want to post some of the cool stuff I’m doing, though! I just need to get over the mental hurdle where I feel frustrated about all the cool stuff I’m not doing or have failed at.

[br1ghtestlight]

apparently being hungover feels a lot like having a migraine which is very funny to me bcuz now i know if i ever drink and then get hungover im gonna feel 100% completely normal and be like wtf this is what you guys were complaining about?? U cant be serious. all this drama for nothing

[show-us-kaidenshenandoah]

me: constantly cracks jokes about how disabled/chronically-ill sickly i am

also me: surprised pikachu face when i get regular-illness-sick ontop of my usual-sick (as if im not suspected to be somewhere on the spectrum of immunocompromised) "this should be illegal"

[unicorns-sparkles-and-rage]

i’m so pissed rn. i found out one of the roommates (roommate a) i was close with is a compulsive liar and she’s super petty and bitchy when she doesn’t get her way. my other roommate (roommate b) has trouble with artificial fragrances to the point where it makes him nauseous and gives him migraines. roommate a thinks our suite smells like ass and has these fragrance plugins which are bothering roommate b. when roommate b tries to communicate this roommate a starts talking shit behind his back. she also went as far as to spray a ton of perfume at his door. needless to say, roommate b contacted an RA as did i cuz that’s just fucked up. i also contacted the RDs which is what the RA suggested.

roommate b also found out that when roommate a got moved into our suite she lied about the reason 💀 she made up a whole sob story when she was actually the problem in the other suite

i’m hoping that the RDs get back to me soon because i’m real upset for roommate b. he also noticed that roommate a talks to me like i’m a baby and it seems to just be because i am autistic :/

[milkweedman]

Some of the stuff ive been spinning on the handmade supported spindles. That bigger green skein was done on my largest handmade supported spindle, and i think i could have fit quite a bit more on there, so im really pleased with that. Obviously nowhere near what i can fit on a bobbin on my wheel, but theres trade offs with everything.

[pixlmonkeys]

my migraine tracking app feels like it’s mocking me sometimes. like. congrats 🥳🥳🥳 you’ve been attack-free for 1 whole day 🥳🥳🥳🥳 ggood job

[shapedforfighting]

Today, I've been casting my mind back to when I lived in my apartment, trying to figure out why I had my shit together then but not now.

Was it the smaller space to manage? The rigid schedule of a day job? A better adherence to routine? Only having one pet to care for? Actual deadlines from when I ran a weekly blog? A lack of money so that I couldn't go out anyway?

No. I realized it was none of these things.

I had my shit together back then because that time was *just* before I started having severe migraines and contracted an autoimmune disorder. I could do much more when my health was alright.

[queenlucythevaliant]

Six things I wish you knew about chronic migraine

(By a person who’s lived with the condition for the last eight + years)

While it’s true that migraine is more common than you think (something like one in five women, one in twenty men), it’s also true that there are lots of different kinds of migraine. Optical migraine (“aura”), vestibular migraine (vertigo), and abdominal migraine (lots of nausea and vomiting) can and do frequently coexist, but only a fraction of the people who get “migraine” experience all three all the time. Complex migraine has symptoms similar to both a seizure and a stroke, frequently in addition to some/all of the aforementioned. A person with chronic complex migraine (like me) and a more normal person who gets an acute migraine every month or so (like my mom) might as well have two entirely different conditions.

Corollary to the above: migraine advocacy needs to cover both breadth and depth of sufferers. Naturally, resources and up-to-date research ought to be available to anyone who experiences migraine symptoms, but there also needs to be acknowledgment that even some people for whom the condition is technically “chronic” (eight days a month) might have it relatively easy in the scheme of things. I often tell people that I have a seizure condition (closely related to migraine) in order to be taken seriously in lieu of a thirty minute lecture. 

Migraine is under-researched and poorly understood. I have one of the most expert migraine neurologists in the US and yet frequently, when I ask him questions that seem like they should have simple answers, his response is “good question.” Lots of meds/treatments are new and experimental and thus not covered by insurance. There is a LOT of migraine-related misinformation in the milieu. I cannot overstate this. Immense truckloads of misinformation. It’s incredible. Take anything a non-neurologist tells you about migraine critically.

You would be astonished by how many needles and hospital visits severe chronic migraine entails. There are periods where I’ve had to get painful injections 3x daily and had hospital visits every other week. IV steroid infusions are also a pretty common occurrence and they suuuuuuck.

Most people who get migraine take either OTC drugs or Imitrex/Sumatriptan pills, and if a person gets any kind of nausea/vomiting with migraine, this is pretty much insane. The body can process migraine like a physical trauma and as a result the stomach stops working (gastric stasis). As a result, if you take a pill after an episode has already begun, it won’t actually get digested until the migraine is basically over already. Injectables are much better if you can get them and it’s absolutely crazy to me that most doctors don’t prescribe them across the board. Doctors have known about the gastric stasis thing for decades now and it really ought to be common knowledge.

 Not specific to migraine, but the longer you suffer with chronic pain the more sensitive your body becomes (barring improvements in treatment). This is kind of counterintuitive- you’d expect to get used to the pain over long exposure, but actually your nerves get hyper-attuned to it. This goes double if you have any kind of allodynia. If you have long-term chronic pain—you’re not going crazy if you think something/everything hurts more now than it used to.

[chronicallyuniconic]

currently swimming in aura juice & it's like "have a seizure or don't" just pick one & go away

[vaya-mernda]

What do ya’ll like to do to pass the time during high pain days / migraine days / days where your pain literally stops you from enjoying all your usual types of leisure?

[cljordan-imperium]

After 3 days of increasing pain...3 injections later and my brain is no longer feeling like it's going to escape my skull...