Lurker of this subreddit for a few weeks now and just wanted to share how my diagnostic process went. Long post incoming.
(Would have added the venting flair too but I think my story is more appropriate? I apologize if I'm wrong about that)
Opening pressure on the lumbar puncture I had last week was 36cm, I started Diamox two days ago.
TL;DR: got diagnosed in less than two months very thankful to my optometrist, lack of medical literature/inquiry into IIH, resident doctors in my area are you okay?? I understand if the answer is no but please calm down??, symptom presentation and advocating for yourself is hard so if you can and want to: get a patient advocate.
Long story with venting incoming:
Up until the end of February 2026 I tried to just deal with my unilateral pulsatile tinnitus that started in 2024 (I had two rejected ENT referrals and was told by my GP at the time that I needed counselling for my poor coping skills after complaining about it twice in late 2024) but was noticing that I was starting to mix up words when talking and was having a lot of trouble remembering things and staying organized.
At the end of February this year I was hit with a crazy headache and unilateral migraine aura. The headache never went away. A week later I got asked at work if I had pink eye, went to the bathroom to look in the mirror and saw I had a pretty substantial subconjunctival hemorrhage.
So I went to my optometrist and I don't know what magic she pulled but I owe her the world. I cannot stress enough how thankful I am to her.
I saw her on a Wednesday and she noted suspected papilledema (I had seen her about 9 months ago at this point and the change in optic nerve visualization was jarring), Thursday morning she got me into an urgent opthalmology clinic, and Friday afternoon I had an MRI that was ordered by the opthalmologist I saw who suspected IIH.
After this my symptoms got progressively worse; I couldn't go outside nor have the lights on inside without throwing up I was so light sensitive, couldn't focus at work, couldn't lay down, my tinnitus was the loudest it's ever been, and my vision got exponentially worse. I went to my ED one night when my peripheral vision went and the headache was excruciating, the doctor there looked at the MRI and told me there were markers for IIH.
Two weeks after the MRI I had an appointment with a neurologist (also at an urgent clinic) who ordered a lumbar puncture. That one took a little longer.
My neurologist when I met her told me that my symptoms were an atypical presentation of IIH (other than not being able to lay down) and more than likely migraines but she still ordered the LP. I asked her if it could be ICP instead of IIH due to my autoimmune disorder that has been diagnosed and her resident who was in the room asked me what symptoms I have from it and then said "oh you probably don't even have that, the symptoms you just said don't make sense for that"
I've seen so many people on here talk about having the same symptoms and I'm honestly unsure if it's a lack of available medical literature or research that led to me being told my symptoms were atypical?
My current ophthalmologist has two residents. This was the part of the process that was the most frustrating but I really want to be in good faith about them as I understand that residency is graduate education so they're still learning, and not levy too much frustration toward them.
The residents seemed to be convinced I did not have papilledema but rather optic nerve drusen and one ordered an eye ultrasound in March (side note: they don't and can't do anything for drusen anyway)
Also eye ultrasounds. Didn't know they were a thing. Do not want to do one ever again.
In the appointment with the resident they said in regard to the uninterpreted eye ultrasound images that it definitively showed drusen and that I had "nothing wrong". Turns out that "nothing wrong" and "mild" are interchangeable, found this out through asking why other doctors (neurologist, other opthalmologist, etc.;) said something was wrong. The resident said that I've probably been told it's mild, and I with all of the politeness in my soul asked them to clarify whether or not going forward I should interpret mild as nothing wrong for medical concerns and not worry about them, to which the resident said that they told me nothing was wrong because I didn't need to be admitted to the hospital and clarified that mild is not the same thing as nothing being wrong.
The attending came in and confirmed stage 1 papilledema.
I've had my lumbar puncture as I stated at the top, I'm officially diagnosed.
I am incredibly lucky that I was diagnosed so quickly and I do not want to come across as ungrateful in my venting but regardless of how fast my appointments were this has been frustrating having to essentially politely argue with every doctor I've seen while not even being able to form a coherent thought or trust that what's going to come out of my mouth will be the word I'm meaning to say. I'm also incredibly grateful that not once did a single doctor blame the IIH on my weight. It was jarring actually? For context I'm 5'10" and 180lb and my last GP blamed EVERYTHING on my weight. Every single doctor I had through this process was clear; regardless of your starting weight if it happens it helps to lose 10%.
I don't have any family where I live, so at face value I don't have any one to advocate for me at medical appointments, I didn't have anyone with me when I ended up with a CSF leak after my lumbar puncture. I'm currently at home cuddling my cat, my tinnitus is back as the CSF leak is healed and I'm incredibly early into Diamox, but it's quieter and I can go out in the sun and enjoy being outside again. Life is starting to feel okay again.
But about advocacy and at risk of stating something obvious (it wasn't to me! and then I promise I'll shut up):
All of my appointments have taken and going forward will take place at one of two hospitals, so if you're someone out there struggling and in a situation where advocacy is difficult whether it be due to family situations, memory, anxiety, frustration, etc.; and your hospital or health authority has patient advocates PLEASE ASK FOR ONE.
They help with everything from navigation, acting as a mediator between you and your doctor, emotional support and concerns/complaints.
I'll end it here! If you read to the end thank you I appreciate it! This community has been a huge help to me over the last few weeks in feeling less alone through this and I hope everyone can get the help that they need, and everybody who's going through the diagnostic process can get answers soon!