#iih — Public Fediverse posts

With apologies to Tracy Chapman:

Body's too old to be workin'
Body's too young to be workin' like this

#ChronicIllness #IIH #disability

I don‘t think anyone will be able to grasp how fucking HUGE it is for me to have watched 2 long episodes of the OPLA show in 2 days. That‘s 2 episodes more than I could endure on my TV from 2023 to right now w/o having to turn it off due to an emerging migraine or eye pain! I cheated a bit and heavily lowered the screen brightness but STILL. That‘s some quality of life gained back right there, even if it won‘t work every day.
#IIH #chronicmigraines

Actual conversation with my very patient 18yo son last night.

Me: I'm sorry, kiddo, I'm all out of that short term, uh ...

Him: Memory.

Me: Yeah, memory. Short-term memory.

#BrainSquish #BrainBroke #BrainInsult #IIH #ChronicIllness #BrainFog

@spiegelmama
I'm always happy to see validation of this. Some health sites are finally starting to cover it too (https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/symptoms-causes/syc-20354031) but I'm still frustrated that Ehlers Danlos still is "too rare" for physicians to link it to at least some of the cases. Chiari Malformation is even "more rare"

I really hope the visibility of all these "rare" conditions increase and the wider medical community starts connecting the dots so that all of us can stop having to fight and actually get the research and treatment we need.

#IIH #IdiopathicIntracranialHypertension #ChronicIllness

@spiegelmama
All of this probably sounds really weird but I've always felt like I couldn't hear really well despite hearing tests always showing I can hear fine so I assume there is something in my (our?) brains that process audio in a weird way

#ComplexAuditoryHallucinations #AuditoryCharlesBonnet #IntracranialHypertension #IIH #IdiopathicIntracranialHypertension #ChronicIllness #Disability

@spiegelmama
Auditory is a weird one for me.... There were times that I could have swore I was hearing music that wasn't there but over time I've come to realize a few things. First is I've found that sometimes I'm far more prone to hear background tracks in TV shows and movies. For me I never had realized how much atmospheric sounds are added to movies and TV shows because I never heard it before. Honestly I never realized this until one time I was high watching a TV show I watched over and over again and noticed it.... It matched some of what I thought I was hearing before. The second thing I noticed is that my brain has a habit of "filling in the blanks" where I hear something at a super low volume... Even as much as a slight air sound (like a draft or something) but my brain tries to interpret it and I process it as music.

#ComplexAuditoryHallucinations #AuditoryCharlesBonnet #IntracranialHypertension #IIH #IdiopathicIntracranialHypertension #ChronicIllness #Disability

@spiegelmama
To be fair though if you only properly evaluate 2 in 100,000 then that's actually 100%

There is a really good chance that a high percentage of people with "run of the mill" migraines are actually linked to this but are never evaluated because.... "It's so rare"

The thing that you need to be extremely thankful for, and where you *are* a rare case (whether or not the condition is rare or not) is that you were diagnosed and have doctors that are looking in the right place. Most people don't have that luxury.

I'm kind of glad I got behind on mastodon and read your post today because I need to remember that there are a few things I can be thankful for on Thanksgiving and if being a diagnosed zebra is it then I should hold on to that.

Happy Thanksgiving

#IIH #MG #Zebra

Frequency of idiopathic intracranial hypertension with ultrasound in patients with fibromyalgia: Relation with function, central sensitization, and neuropathic pain

https://onlinelibrary.wiley.com/doi/abs/10.1111/1756-185X.15066

#IdiopathicIntracranialHypertension #IIH #Fibromyalgia #Fibro #FMS #FM @fibromyalgia

Lol, this is funny yet frustrating! To other #blind people, have you ever mistaken hand sanitizer for lotion? Just wore myself out rubbing what I thought was lotion all over me to try to get rid of itching from dry skin, only to go ask my stepdad to help rub some on my arms where I couldn't reach and have him tell me it was hand sanitizer. Even exerted myself to the point of making my #IIH symptoms worse. Hoping it doesn't make my skin issues flare now. Too tired to go wash it off.
@mastoblind

2/2
That's looking more and more likely since I still haven't seen a primary care doctor and probably won't until sometime in October, and these #headaches won't get better until I see a neurologist and have surgery to get a shunt put in to keep the pressure in my skull from getting high. Getting a neurology appointment could take weeks or months! Next semester starts in January, so I doubt I'll be ready then. The orientation emails just remind me of all this.
#IIH #chronicIllness #NEISvoid

2/2
Now realizing I probably can't handle school with these headaches but it's still upsetting. Also just got stung by a red wasp on my left middle finger, which really hurt. My finger is all swollen and my hand is swelling too. Luckily we got the stinger out quickly.
#ChronicIllness #IIH #NEISvoid

3/5
hoping they can help. I've been getting bad #headaches and whooshing sounds in my left ear, both symptoms of my #IIH, and they seem to be worsening. I don't have a neurologist, and the primary care doctor Medicaid chose for me can't see me until October. Might be other doctors available but they're hard to find. So we're thinking of making a trip to the hospital. They could do a spinal tap to lower the pressure in my skull, since it's probably high judging by the symptoms, and might help

I love our new house in Pipe Creek, which is not too far from San Antonio, but ugh! smoke detectors with dying batteries are *not* #autism and #ChronicHeadache friendly! Had to stumble around with my hands over my ears until I found my stepdad's room and wake him up to take the battery out of the thing. He's hard of hearing and on the other side of the house so didn't hear a thing. #IIH #ChronicIllness #NEISvoid

Wide awake tonight because I slept until 3:00 PM yesterday and spent a lot of the rest of the day in bed. Just doing stuff on my computer. Had a rough day with #headaches, sound sensitivity, and whooshing in ears from #IIH (high pressure in skull), neck pain, and #fatigue. Lol actually wanted to go back to sleep but headache meds didn't knock me out like they usually do. Anyone else awake? #NEISvoid #ChronicIllness #ChronicPain

A few updates, so I'll post a few times instead of trying to cram them into 500 characters. Had to stop wearing the soft neck collar. It was somehow making the high pressure in my skull from #IIH worse, so my #headaches and the whooshing I hear in my ears sometimes got worse. I was in a lot of pain for a couple of days until my mom figured out what was wrong and told me to take the collar off. Luckily, I have my first #physicaltherapy appointment on Monday. #NEISvoid #ChronicIllness #ChronicPain

Lol trying to get some work done on a #usability testing study I'm in while I'm feeling relatively good, but apparently my focus is crap today. I keep finding myself doing other completely unrelated things on my computer. #ChronicIllness brain fog really makes things difficult sometimes, doesn't it? Going to try to force myself to focus since my #IIH, #GERD, or #fibromyalgia could start giving me problems at any time. And usually, when I go down, I go down hard and there's no stopping it.

Intro. Hi all. Spoonie with sizable herd of zebras. I'm hoping for this to be a place to get important info on COVID and other crises, connect with other disabled people, and grow my advocacy skills. My current focus is to make actionable changes toward the therapy field being less ableist and creating more chronic illness competent therapists. Imma get comfy before posting much but grateful for follow suggestions.
#CRPS #IIH #Gastroparesis #Migraines #Therapy #Disabled #MaskUp #CovidIsAirborne

I have a condition called IIH (idiopathic intracranial hypertension). It is VERY painful. But that's not stopping me! I want to bring art and originality back to film, and though it's excruciating, pain is not the master of my body.

I AM.

#pain #disability #film #auteur #movies #disabled #iih #youcandoit