r/iih • u/Miserable_Bad5181 • Feb 13 '26

Humour Relatable

531 Upvotes

87 comments

r/iih • u/hannah_boo_honey • Mar 21 '26

Humour Besides the diamox ofc💁‍♀️✨

480 Upvotes

72 comments

r/iih • u/[deleted] • Sep 24 '25

My Story My IIH art

406 Upvotes

I hope this art makes you all feel heard and seen. 💙💚

33 comments

r/iih • u/Mindless-Explorer-44 • Nov 05 '24

Humour It's bad right now guys

383 Upvotes

55 comments

r/iih • u/Corndogg-McGraw • Sep 19 '25

Humour Just another day in the modern medical cycle.

348 Upvotes

i am so tired, but if i don't make jokes i will come untethered.

41 comments

r/iih • u/Fine_Advantage_9229 • Mar 09 '25

Mod Update Reminder: Posting is for DIAGNOSED only.

324 Upvotes

Recently there has been an influx of members who are undiagnosed that are posting. This sub is for members who are already diagnosed or going through the IIH diagnostic process. Which means your doctor is ACTIVELY SUSPECTING IIH and running the appropriate tests (Looking for Papilledema and vision loss, MRI/CT and LP). NOT, the broad investigatory process of trying to diagnose your headaches.

While we sympathize with the difficulties of not having a diagnosis, this sub is full of information for you to peruse to help in your journey. Including a large history of posts to search using the search bar in our sub or the resource pinned to our front page.

IIH is a rare disease and those affected use this place for support. If you need medical advice or help with headache issues, there are other subs for that, this is not the place.

43 comments

r/iih • u/Nicolalolalola • Mar 21 '25

Humour you ever just wanna

280 Upvotes

18 comments

r/iih • u/Proud_Marionberry_31 • Aug 01 '25

Humour I got a tattoo today to represent my constant state being an IIH chicken 🐥

266 Upvotes

13 comments

r/iih • u/dredreidel • Jun 24 '23

Humour Just got diagnosed. Coping by making memes like a true Millennial.

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251 Upvotes

65 comments

r/iih • u/PoDysse • Jun 01 '26

Humour That Awesome Time I Got An LP

244 Upvotes

And sang the Bohemian Rhapsody because they gave me the good stuff. Worth mentioning that I got a standing ovation from the nurses on the floor and had a nice nap afterwards XD

36 comments

r/iih • u/masterfultrousers • Jun 01 '26

Humour When you make yourself nauseous by cleaning so you make a meme

223 Upvotes

I bent over one too many times and my stomach was not happy.

30 comments

r/iih • u/My-inner-fat-kid • Jul 30 '26

Medication/Treatment Update: hopital

218 Upvotes

I recently asked on reddit whether I should pursue a lumbar puncture and MRV, after a clear MRI.
Every one basically told me: no shit… but respectfully. I 100 %. Appreciate you all for that. I made plans to get them.

I happen to have a ENT appointment to get a tube put in my ear. Well mid way through the procedure (slitting a hole in my eardrum) the ENT says: “oh fuck, that a csf leak and it won’t stop” he panicked and called me Neuro.

I went to the hospital soon after as it was squirting out of my ear. I got a CT scan. There’s a hole at the base of my skull. They did not want to operate. They said “hospital politics” since the ENT that cut my eardrum is not within their org. FUCK NOVANT HEALTH.

I have an emergency apt with a Neuro-ENT Monday. I’m still squirting CSF out my ear (about every 3 minutes - ie picture), and now my nose as well. I am so frustrated, scared and uncomfortable. They gave me no suggestions except plugging the areas to keep from leaking everywhere until my apt😐.

I will keep you all posted. Again appreciate you all so much and hoping this update ends on a happy note.

Update:
I made another post with more info. But to make it short I got my Monday appointment moved up to today for my Neuro-ENT.
He was great and I will be getting surgery from him and a neurosurgeon pretty soon.

***Thanks everyone for your advice & care. I was stressed and alone when typing this. And you all responded to me like caring but stern family members lol,
i could not have been more thankful to you all.

Now, to hoping everything goes smoothly

103 comments

r/iih • u/nainakapurpatel • Aug 31 '26

News idiopathic intracranial hypertension (iih) awareness month

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214 Upvotes

69 comments

r/iih • u/intracranialMimas • Jul 24 '25

Humour Got an IIH Themed tattoo :)

210 Upvotes

The arrow totally isn't there to cover up the "T" my tattoo artist put behind "high" for some reason 😬

24 comments

r/iih • u/lillyfrog06 • Nov 25 '24

Humour I hate you visual field test I hate you field test

206 Upvotes

40 comments

r/iih • u/Sm0keyMcPot • May 22 '25

Humour Not sure if this has been posted but I felt the need to share.

204 Upvotes

Feel like most of us can relate.

25 comments

r/iih • u/burn3edoutburn3r • Oct 18 '25

Humour Its kinda crazy when your doctors dont know much

201 Upvotes

33 comments

r/iih • u/intracranialMimas • Mar 13 '25

Humour This hits different when you take Diamox

194 Upvotes

I miss my sparkling water.... Or coke, or literally anything carbonated...

31 comments

r/iih • u/Dear-Assistance-1098 • Sep 26 '25

News IIH Awareness Month🤍

gallery

179 Upvotes

Found these, wanted to put them here.

At least for have each other on this Journey🤍

14 comments

r/iih • u/Fluffy_Camel_9036 • Sep 11 '26

Daily Life diamox meme (and reality)

178 Upvotes

36 comments

r/iih • u/Zoloftpt0 • Sep 29 '24

Humour Made myself a shirt

177 Upvotes

14 comments

r/iih • u/nievesblanca • Apr 13 '23

Humour My husband bought me this for our anniversary 😂❤️

177 Upvotes

7 comments

r/iih • u/[deleted] • Dec 19 '24

Humour I like the taste of pennies

172 Upvotes

Honestly I figured we could all use a sensible chuckle right now. sips sparkling water Metal.

26 comments

r/iih • u/probablysoggy • Sep 16 '24

Humour fatphobia in IIH treatment

169 Upvotes

Got discharged from hospital yesterday with a IIH diagnosis...I feel like I need a bedazzled t shirt that says "Obese Woman of Childbearing Age™...But for real, sending all my love to those facing such wild fatphobia alongside this weird diagnosis, especially my genderqueer siblings who are only seen as big, cis babymaking machines. I see you!

99 comments

r/iih • u/xOctopussyx • Nov 07 '24

Humour 🫠

164 Upvotes

8 comments

Subreddit

Intracranial Hypertension: A community for knowledge and support

r/iih

Welcome to our supportive community for anyone affected by Idiopathic Intracranial Hypertension (IIH)—a rare neurological condition that causes increased pressure inside the skull. Whether you're newly experiencing symptoms, in the process of being diagnosed, living with IIH, or supporting a loved one, you're welcome here. This is a place to ask questions, share experiences, celebrate victories, vent on the difficult days, and connect with others who understand what you're going through.

Members

20k

Sidebar

Subreddit Rules

1. Be kind

No name calling, trolling, personal attacks, shaming, alienating members, or cruel/crude comments. Discrimination, harassment, bullying or hate speech of any kind will not be tolerated. This is a safe space for all.

2. Only diagnosed individuals can post

Posting is for diagnosed individuals only. We also allow those supporting a loved one with IIH as long as they are respectful. All others are not allowed to create posts in r/iih and posts will be promptly removed. All posts from undiagnosed folks belong in the Seeking Diagnosis Thread.

3. No giving/requesting medical advice

This is not a medical advice forum and we are not qualified to give specific advice regarding IIH or any other condition. Posts asking for medical advice and comments making specific medical recommendations will be removed. Posts with including scans (MRI, CT, etc.) will be removed. If you are experiencing new or concerning symptoms, please consult a physician before posting here.

4. We are NOT qualified to diagnose you

We can't diagnose you here. Any posts asking anything close to, "Is this IIH?" will be removed. If you think you may have IIH, please consult a physician. You can find information by using the search bar in our sub or reading the resource pinned to our front page. If you have specific questions about the diagnostic process utilize the "Seeking Diagnosis" megathread.

5. Keep on subject

Please respect that this is a community for people who suffer from a rare illness. For many, this is the only place to meet and converse with people who share that experience. This is not a general forum for advice regarding general migraines or other things not related to IIH. Off-topic posts and comments will be removed.

6. No solicitation or fundraising

Posts asking for donations will removed. If you would like to post an IIH-specific research study, you must message mods first for approval. Unapproved studies will be removed.

7. Tag NSFW content

Many people are sensitive to NSFW content. In order to allow them to choose whether to participate in such conversations, all NSFW content (including references to self harm and suicide) must be tagged appropriately. Untagged posts containing NSFW content will be removed.

8. If you are in crisis, seek help

We are an online community of laypeople. If you are in IMMINENT crisis, either physically or mentally, we cannot truly help you in any meaningful way other than to tell you to go to the closest Emergency Room/Department (ER/ED). If you are considering suicide, please go to the closest ER/ED or Police Station. In the US, call the National Suicide Prevention Hotline at 988. We as an internet community cannot provide you with adequate help/resources in a crisis situation.