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spiegelmamaI almost missed the whole day because every time I tried to get out of bed, I hit full-on vertigo. It's been months since that has happened, and it freaked me out. I texted my husband to come in from the backhouse, and when he eventually saw my text, he came in, flopped down, and took a nap for three hours. When I was finally able to wake him up, though, he was really helpful. He stood in front of me to catch me if necessary, he encouraged me to try again and wait through it when I again got vertigo, and he watched over me until he could tell I was OK. This was at 7 p.m. I don't think I'm doing anything today. <a href="https://infosec.exchange/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a href="https://infosec.exchange/tags/vertigo" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#vertigo</a> <a href="https://infosec.exchange/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a>

Bob K Mertz :distressedUS:<a href="https://infosec.exchange/@spiegelmama" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@spiegelmama</a> 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<a href="https://techhub.social/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://techhub.social/tags/MG" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MG</a> <a href="https://techhub.social/tags/Zebra" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Zebra</a>

INTENTIONALLY blankThe oncologist doesn't want to deal with the IIH because it's not an onco thing, the neuro doesn't want to handle the IIH because it's an ophthalmologist thing, and the ophthalmologist doesn't want to deal with the IIH because it's a neurologist thing.Meanwhile the pressure in my head was about to squish my eyeballs and giving my brain a very very bad day. Can someone PLEASE tell me why people are so weird about prescriptions for my "pseudo tumor cerebri"???<a href="https://universeodon.com/tags/IntracranialHyptertension" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IntracranialHyptertension</a> <a href="https://universeodon.com/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://universeodon.com/tags/IYKYK" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IYKYK</a>

Tom KindlonFrequency of idiopathic intracranial hypertension with ultrasound in patients with fibromyalgia: Relation with function, central sensitization, and neuropathic pain<a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/1756-185X.15066" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://onlinelibrary.wiley.com/doi/abs/10.1111/1756-185X.15066</a><a href="https://disabled.social/tags/IdiopathicIntracranialHypertension" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IdiopathicIntracranialHypertension</a> <a href="https://disabled.social/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibromyalgia</a> <a href="https://disabled.social/tags/Fibro" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibro</a> <a href="https://disabled.social/tags/FMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FMS</a> <a href="https://disabled.social/tags/FM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FM</a> <a href="https://a.gup.pe/u/fibromyalgia" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@fibromyalgia</a>

Lanie CarmeloBrain <a href="https://tweesecake.social/tags/MRI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MRI</a> and <a href="https://tweesecake.social/tags/MRV" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MRV</a> today at 4:45 PM. It's almost 3 now so I'm getting ready. I feel like complete crap today so just moving is hard. Had a rough night last night. Lots of pain, couldn't get comfortable, just didn't feel good, didn't sleep at all. That's why I was on here posting several times. I managed to get a few hours of sleep earlier, but I still don't feel good. Hoping we can either take my manual wheelchair or this place isn't far to walk, because I don't think I can walk far or fast today. Don't really want to go, but don't want to reschedule because double MRI and MRV appointments like this that take an hour are hard to get, so who knows when my next one will be, I want to know why my headaches are so bad, and I have a neurosurgery appointment in a few days, which is pretty much useless without these scans. <a href="https://tweesecake.social/tags/chronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicIllness</a> <a href="https://tweesecake.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a> <a href="https://tweesecake.social/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://tweesecake.social/tags/IdiopathicIntracranialHypertension" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IdiopathicIntracranialHypertension</a> <a href="https://tweesecake.social/tags/chronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicPain</a>

Lanie CarmeloFeeling very <a href="https://tweesecake.social/tags/overstimulated" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#overstimulated</a> right now. My mom and stepdad are both working this week, which means I'm at home with our animals by myself during the day. Our six <a href="https://tweesecake.social/tags/dogs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dogs</a> keep barking at every noise they hear, giving me major <a href="https://tweesecake.social/tags/SensoryOverload" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SensoryOverload</a>. I love my little guy, Squeaker, but he has the worst bark out of all of them, high-pitched, ear-piercing, and squeaky. Three other dogs have big, loud barks, one has a smaller bark but is deaf so a lot of times doesn't stop when the others do, and another is going senile and tends to randomly start barking for no reason that we can see. I could shut my bedroom door, but then I might not hear if someone needs to go potty. It's not just sensory overload. The constant barking makes my <a href="https://tweesecake.social/tags/headaches" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#headaches</a> worse, too. We have a dog door but can't keep it open because of other animals we have to keep locked out of the house. Other than that, today is going well, but sensory overload is not fun. Sorry, just need to vent. <a href="https://tweesecake.social/tags/autism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autism</a> <a href="https://tweesecake.social/tags/actuallyAutistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#actuallyAutistic</a> <a href="https://tweesecake.social/tags/dogsOfMastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dogsOfMastodon</a> <a href="https://tweesecake.social/tags/chronicHeadaches" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicHeadaches</a> <a href="https://tweesecake.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a href="https://tweesecake.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a> <a href="https://tweesecake.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a> <a href="https://tweesecake.social/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://tweesecake.social/tags/IdiopathicIntracranialHypertension" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IdiopathicIntracranialHypertension</a> <a href="https://tweesecake.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://tweesecake.social/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a>

INTENTIONALLY blankComing to the realization that the IIH is going to be a bigger issue than I thought. I was planning to go to Denver in February, Scotland in summer for a work thing. March I was hoping to be well enough to get the family up to do some snowshoeing in the mountains like we did in the BC years (before cancer).But I may not be able to fly or visit the mountains because the pressure changes could mess me up.How do people live with intracranial hypertension? How do I make this work?I was relieved it wasn't a tumor and more cancer but shit...this sucks.<a href="https://universeodon.com/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://universeodon.com/tags/UnderPressure" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UnderPressure</a> <a href="https://universeodon.com/tags/Travel" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Travel</a> <a href="https://universeodon.com/tags/Flying" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Flying</a> <a href="https://universeodon.com/tags/hypertension" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hypertension</a>

Darling Ultra<a href="https://swiss-talk.net/@dmz" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@dmz</a> Ich hab leider immer öfter das Gefühl,daran ist eher der Zustand des System Schuld, als der wirklich tiefe Wunsch tot zu sein. <a href="https://home.social/tags/Medizinbrennt" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Medizinbrennt</a> Ich versteh das Gefühl, ich hab es auch oft. Die Verzweiflung das einem nicht geholfen wird.. <a href="https://home.social/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://home.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a> <a href="https://home.social/tags/awarness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#awarness</a>

dystobot[Automatic repost <a href="https://twitter.com/dystobot/status/1648544548660862976" target="_blank" rel="nofollow noopener noreferrer" translate="no">https://twitter.com/dystobot/status/1648544548660862976</a>]RT @Aaleayha: My daily struggle: <a href="https://med-mastodon.com/tags/hEDS" class="mention hashtag" rel="tag">#hEDS</a>, <a href="https://med-mastodon.com/tags/CCI" class="mention hashtag" rel="tag">#CCI</a>, <a href="https://med-mastodon.com/tags/Chiari" class="mention hashtag" rel="tag">#Chiari</a>, <a href="https://med-mastodon.com/tags/seizures" class="mention hashtag" rel="tag">#seizures</a>, <a href="https://med-mastodon.com/tags/Dystonia" class="mention hashtag" rel="tag">#Dystonia</a>, <a href="https://med-mastodon.com/tags/Dysautonomia" class="mention hashtag" rel="tag">#Dysautonomia</a>, <a href="https://med-mastodon.com/tags/POTs" class="mention hashtag" rel="tag">#POTs</a>, <a href="https://med-mastodon.com/tags/IIH" class="mention hashtag" rel="tag">#IIH</a> <a href="https://med-mastodon.com/tags/migraine" class="mention hashtag" rel="tag">#migraine</a>, <a href="https://med-mastodon.com/tags/asthma" class="mention hashtag" rel="tag">#asthma</a>, C1-L5 herniated discs, spinal cord compression, <a href="https://med-mastodon.com/tags/neuropathy" class="mention hashtag" rel="tag">#neuropathy</a>, muscle spasms, <a href="https://med-mastodon.com/tags/chronicpain" class="mention hashtag" rel="tag">#chronicpain</a> <a href="https://med-mastodon.com/tags/sciatica" class="mention hashtag" rel="tag">#sciatica</a>, <a href="https://med-mastodon.com/tags/incontinence" class="mention hashtag" rel="tag">#incontinence</a>, <a href="https://med-mastodon.com/tags/RheumatoidArthritis" class="mention hashtag" rel="tag">#RheumatoidArthritis</a>, stiffness, <a href="https://med-mastodon.com/tags/IBS" class="mention hashtag" rel="tag">#IBS</a>, <a href="https://med-mastodon.com/tags/gastroparesis" class="mention hashtag" rel="tag">#gastroparesis</a>

Neuro Pride IrelandToday marks Rare Disease Day 2023🧠 <a href="https://mastodon.ie/@queer_cir" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@queer_cir</a> ’s story with IIH can be found in the images<a href="https://mastodon.ie/tags/RDD2023" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RDD2023</a> <a href="https://mastodon.ie/tags/RDD23" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RDD23</a> <a href="https://mastodon.ie/tags/RareDiseaseDay2023" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseDay2023</a> <a href="https://mastodon.ie/tags/RareDiseaseDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseDay</a> <a href="https://mastodon.ie/tags/LightUpForRare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LightUpForRare</a> <a href="https://mastodon.ie/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://mastodon.ie/tags/IH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IH</a> <a href="https://mastodon.ie/tags/IIHAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIHAwareness</a>Image is from lifewithiih

DoozyDoesStuffIntro. 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. <a href="https://disabled.social/tags/CRPS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CRPS</a> <a href="https://disabled.social/tags/IIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IIH</a> <a href="https://disabled.social/tags/Gastroparesis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Gastroparesis</a> <a href="https://disabled.social/tags/Migraines" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Migraines</a> <a href="https://disabled.social/tags/Therapy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Therapy</a> <a href="https://disabled.social/tags/Disabled" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Disabled</a> <a href="https://disabled.social/tags/MaskUp" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MaskUp</a> <a href="https://disabled.social/tags/CovidIsAirborne" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CovidIsAirborne</a>

eel patrick harrisokay, <a href="https://queer.party/tags/introduction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#introduction</a>!hi, i’m an ex-librarian, current web/ux person.honestly usually kind of a lurker, so don’t expect much, but here are some interests that might come up/intersect with yours…   <a href="https://queer.party/tags/cats" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#cats</a> <a href="https://queer.party/tags/scifi" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#scifi</a> <a href="https://queer.party/tags/accessibility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#accessibility</a> <a href="https://queer.party/tags/critlib" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#critlib</a> <a href="https://queer.party/tags/ux" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ux</a> <a href="https://queer.party/tags/horror" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#horror</a> <a href="https://queer.party/tags/cooking" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#cooking</a> <a href="https://queer.party/tags/queertheory" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#queertheory</a> <a href="https://queer.party/tags/iih" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#iih</a> <a href="https://queer.party/tags/fatliberation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#fatliberation</a> <a href="https://queer.party/tags/museums" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#museums</a> <a href="https://queer.party/tags/dc" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dc</a> <a href="https://queer.party/tags/tucson" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#tucson</a>  <a href="https://queer.party/tags/nanowrimo" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#nanowrimo</a> <a href="https://queer.party/tags/art" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#art</a> <a href="https://queer.party/tags/hearthstone" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hearthstone</a> <a href="https://queer.party/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#longcovid</a> <a href="https://queer.party/tags/fantasy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#fantasy</a> <a href="https://queer.party/tags/dnd" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dnd</a> <a href="https://queer.party/tags/editing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#editing</a> <a href="https://queer.party/tags/creativenonfiction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#creativenonfiction</a> <a href="https://queer.party/tags/radicalmentalhealth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#radicalmentalhealth</a>  and really all kinds of weird experimental media (both consuming and creating)

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