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Kira Aug 14
Replying to @kirafae
Then came the due to...everything we did I had too much CSF fluid in my skull putting pressure on my brain and risking my eyesight. Sadly the treatment is the exact opposite I needed to control my heart issues. So we put a VP in my brain.
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Sali Sutherland Aug 18
Really feeling for people who are years into the struggle with - I got diagnosed less than 6 months ago & I’m already so done. The condition is shit, the medication is super shit, I feel like a huge pile of hot trash. Does it end?!
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Melanie Lou Aug 18
No matter how much experience I have in the field, not getting my master's degree is kicking my tail. Like I need one more hurdle
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EmJo Mar 21
Another day stuck in bed. I swear to God y’all, I wouldn’t wish this shit on anyone.
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Rivaka Marie Feb 9
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beckie boo (bex) Jan 28
This headache needs to go 😭 I’ve been home a week and it’s back, I’ve struggled all day even lifting my head and with vision problems. Roll on when I get a review
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Chronically Fabulous 🎀♿🐈 Mar 29
Ive been absent for months.. is nooo joke.
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Poetiqué's H.🏳️‍🌈🖌♿✏ Jun 14
Me: Genetic/Family History of Autoimmune Disorders Person on the Interwebs: You really need to try this diet/oil/ psychotherapy/ magic spell. It totally cured my friend's aunt's boss' daughter-in-law. Me:
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gabby Jan 27
My head has a heartbeat
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Maartje Aug 8
Todays appointment went well, its worth the nerve pain im having now..
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Chronically Fabulous 🎀♿🐈 Dec 15
I am so confused lately. Is this ever going to improve? 🙁
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Sali Sutherland Aug 6
For this evening’s entertainment: instead of the cutesie tingly sensation in my hands & face, the whole lower half of my legs is buzzing & I can’t feel my toes. Yay.
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Rachel Lee Cherry Feb 28
Oh hey, it’s . PSA: See your eye doctor regularly. Swollen optic nerves are a symptom of IIH, which can cause headaches among other problems. You can lose your vision if untreated.
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beckie boo (bex) Jan 20
So happy to be home and actually have a proper name for these headaches
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mahan chehrenama Mar 2
⁩ ⁦reporting on as severe as disease & &most correlated with .⁦⁩ ⁦⁩ should we add a disability scale for eye symptoms in
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Vonne Apr 10
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Melanie Lou Jul 27
Ran errands for about 45 minutes this morning & came home to take a 2 hour nap. You'd think after 6 years of being chronically ill, I'd be used to this by now... I'm not 😣
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somethingcleverandnastylikeiusedtobe Feb 15
Any in the or area doing sliding scale or work as it relates to ? Im sure there are more deserving people in worse circumstances but Im scared & I want to keep my vision.
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ⓥeryGemini Jan 14
When some told me they get headaches "when they're stressed too" 🤦‍♀️🤦‍♀️🤦‍♀️ okay
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Kristi Kahlden Dec 21
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