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.
Oh wow, I just found out a YouTube doctor mentioned my latest diagnosis, IIH, in a video. It's the first of five conditions in a YT short, but it is acknowledged. Neat. I have something to send my friends. #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
pepper 🐝
spiegelmama
Bob K Mertz 
Wisdom4theblind
Lotti Katzkowski