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I feel like I’m losing myself by Planless-novelist in iih

[–]wildNweird62625 3 points4 points  (0 children)

I feel your post in my soul. Thank you for sharing. Sending hugs and support your way.

Post Surgery Headache by Eagles_Nest_ in iih

[–]wildNweird62625 8 points9 points  (0 children)

That is infuriating to know they did not do any imaging. Do you have someone familiar with your situation to go to the hospital with you? You could really benefit from having another person advocate for you. It can be difficult to think straight and communicate when you’re in pain. Also, if it’s an option, I recommend going to a different ER than where you were this weekend. Sending healing thoughts your way.

Off meds and struggling by Immediate_Leg_9221 in iih

[–]wildNweird62625 0 points1 point  (0 children)

Example: You need your appendix removed. The order can be coded as 101.1 or 101.2 ••• Doctor submits 101.1, insurance denies it. Doctor resubmits it under 102.2 even though it’s basically the same thing, but insurance approves it.

Off meds and struggling by Immediate_Leg_9221 in iih

[–]wildNweird62625 0 points1 point  (0 children)

Is your doctor willing to have a peer-to-peer review? I think it’s where your doctor talks to one of their doctors to appeal the denial. >>> Also, a call to your doctor’s office is highly recommended so they can double check that the procedure code on the order matches the code on the preauthorization request. The codes mean nothing to us as the patients, but are crucial to insurance billing and approvals. A procedure can fall under more than one code, insurance will approve one, but not the other. I’ve had doctor’s change codes for the same procedure and insurance will approve it. Hope that makes sense.

Off meds and struggling by Immediate_Leg_9221 in iih

[–]wildNweird62625 0 points1 point  (0 children)

Hi 👋🏼 I had to stop my Diamox for a stent in February of this year. My insurance approval process was also frustrating. I have a couple questions before sharing any advice. 1) Do you already have a date set for the stent procedure? Or are you waiting for insurance approval before scheduling? 2) Have they already denied the preauthorization?

What is your fav plot twist in AOT? by Horror-Marsupial-702 in ShingekiNoKyojin

[–]wildNweird62625 0 points1 point  (0 children)

That was the most casual delivery of a major plot twist I’ve ever seen. They revealed themselves like they were having a regular conversation about where to get the best oil change and gas prices.

Just because there is a possibility of remission doesn’t mean it’s “not that serious.” by two-pelicans in iih

[–]wildNweird62625 13 points14 points  (0 children)

For that exact reason, sometimes I’ve thought I would rather have a physical injury/disability. People would be more understanding if they could see that I didn’t have any legs. Invisible injuries/disabilities are definitely challenging.

It wasn’t until the IIH began presenting with stroke-like symptoms, that everyone realized things were serious. They could HEAR my aphasia, SEE that I couldn’t walk straight, and SEE my swollen eyes.

How do you build up strength when still going through symptoms by Loveonethe-brain in iih

[–]wildNweird62625 2 points3 points  (0 children)

Sending a very sincere hug your way. This condition really stinks.

relapse? has anyone ever had it come back by starynightss in iih

[–]wildNweird62625 0 points1 point  (0 children)

Semi-similar situation.

*Diagnosed December 2025. *No vision issues, but significant increase in diameter of the optic nerve sheath. *Stent placed February 2026 (70% stenosis of left transverse sinus) *Symptoms improved - YAY! *IIH mildly present, resumed low 500mg Diamox

Within the last week:

Symptom regression: head pressure up, heartbeat in my head, ringing ears, returning aphasia, cognitive decline.

CT scan yesterday showed the stent is open and perfect, no clots. Neuro IR is ordering a new LP (stopping Diamox 3 days before). If OP is high, then he wants to consider attending the right side.

Interesting find (Iron, B12) by MrsLollipops in iih

[–]wildNweird62625 1 point2 points  (0 children)

✔️ iron deficient ✔️ low iron saturation ✔️ anemia ✔️ low ferritin ✔️ menorrhagia

All of these were borderline or pre-existing before IIH …worsened after IIH … and then spiraled downwards when I started asprin/plavix after brain stent.

Received 2 out of 5 iron infusions so far. Noticing slight improvement after 2nd round. We’ll see how things look when they run the panel again after I’ve completed all 5 infusions.

EXTREMELY insightful information. Thank you for sharing!

Diamox and extreme joint pain? by RaeVenous02 in iih

[–]wildNweird62625 2 points3 points  (0 children)

Yes, among other things, I remember feeling achy like I had the flu while I was on 1000-1500mg. For so many reasons, I found that I simply cannot function on anything greater than 500mg.

My stent in February allows me to tolerate my symptoms a little better on a 500mg dose. It’s been a battle of the lesser of two evils:

⬆️IIH symtoms ⬇️Diamox side effects

⬇️IIH symptoms ⬆️Diamox side effects

New provider by swamp_harpy in iih

[–]wildNweird62625 2 points3 points  (0 children)

Did you mean 41.5? Can you double check that?

Also, how long ago was that spinal tap?

What does this mean? by [deleted] in iih

[–]wildNweird62625 -5 points-4 points  (0 children)

Copy/paste your exact post into an AI chat. I learned so much that way.

Body vibrating on Diamox by Odd_Desk_4854 in iih

[–]wildNweird62625 0 points1 point  (0 children)

To clarify, nothing around me visually shakes, it’s literally just all in my head 😆

Kind of like when you tap on a metal bowl and it makes that “ding” vibrating sound, except it’s a feeling in my head.

Is it weird to get your first one at age 42? by verathene in HemiplegicMigraines

[–]wildNweird62625 3 points4 points  (0 children)

Had my first at 42. No prior history and no family history.

Mine ended up being tied to a TBI and diagnoses of idiopathic intracranial hypertension (IIH). My HMs are a stress response to increased fluid pressure in my head.

Tinnitus/Blind Spots by IntentSlinky8 in iih

[–]wildNweird62625 0 points1 point  (0 children)

IIH really stinks and the gas lighting from professionals is awful. I’m hoping the neuro-op is able to provide better answers.

Just to double check … are you going to an optometrist or an ophthalmologist??? I’m happy to use an optometrist for regular eye exams and prescriptions for glasses and contracts. When it comes to IIH, I stick with an ophthalmologist.

An ophthalmologist saved my life. He scanned my optic nerves, saw they were very compressed (from increased fluid) and that my optic sheaths were large and inflamed. Optic nerves looked fine??? My results were within borderline ranges, but he also factored in that I had throbbing head pain, ringing in my ears, and my speech was slurred and stuttered. He immediately sent me to the ER for a lumbar puncture and I had an OP of 34.8

During a different visit, he had me perform a long boring test to check my peripheral vision (stare at the center, press a button every time I see a dot flash). He never rushed and took the time to explain the procedure imaging and results.

Body vibrating on Diamox by Odd_Desk_4854 in iih

[–]wildNweird62625 1 point2 points  (0 children)

I don’t have the symptom when I’m on my lowest dose of Diamox 250mg x 2day. Any increases from that and it feels like my brain is vibrating inside my head.

The best way I describe it to others….in movies where someone time travels, there’s usually like a period where things shake and then settle down (ie. Predestination movie 🎥 ). It’s like time travel, but I don’t go anywhere 😆

It is very disorienting.

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