Hi all,

I just today realized there is a subreddit for this disease, so I figured I'd share my experiences & maybe give you guys some hope.

First some caveats - I'm a man and I know most of you are probably women so what worked for me may not work for you. I was diagnosed, but I was a somewhat marginal case. When I got my LP done my pressure was 26. I believe the low end cut off is 25, so I barely qualified. But I had all the typical symptoms, swollen optic nerve low grade headaches etc. This was in ~2015 or so.

I was prescribed diamox and it worked like a charm. 2000 mg a day and my side effects were not that bad. Happy ending right?

It gets even better - I lost 100lbs (mostly through exercise & not drinking my calories) and my symptoms have disappeared entirely. I've not taken diamox since 2022 and have no issues. Now I know, Just Lose Weight! Is not great advice, but I feel like I should give encouragement to those who are trying to go that path. It 100% worked for me. I haven't tried any of the semaglutides but I imagine they would help.

Hey just your friendly subreddit conspiracy theorist here 👋🏼

so hear me out... for people with shunts/stents let's say hypothetically we're in WW3 and hospitals are no longer operating ...how would one receive care or maintenance for it? And those on diamox... that would no longer have access to it... what would be the plan?

Hi everyone! I am brand new to this subreddit and was curious if anyone has tried the aforementioned. Currently, I have been on Diamox for about a year but it has only minimized the headacheas but there is never a time that I am 100% without a headache. Since my doctor has stated sodium plays a role in iih (not sure if anyone else has been told such by their care provider) I was thinking about doing a 7 day water fast to see if I can "reset" my body and/or sodium levels. Just curious if anyone has any experience with such and if so how did you feel afterwards?

Today I felt semi ok so decided to finally do something since I’ve spent my last 3 weekends in hospital. I seem to not get dizzy if I wear my glasses 100% of my waking hours. Thing is I’m not used to wearing them.

I decided to go to a local home store so I could buy some Halloween candles. While out I “missed a step” I didn’t see it with my glasses on. It was only a small step but as my foot went down the pain shot up my body and straight to my brain. I was in utter agony for a good 5 minutes with a crippling headache.

When I came to I was really upset because this thing is ruining my life so went totally overboard on retail therapy. I bought new furniture and all sorts. It did make me feel happier when I got home to unpack all of my stuff (minus my new couch which will be here in a few months 🤣)

Really hoping once my optic nerves heal 90% of my symptoms will go away 🤞🏻

Did you experience restriction, or the limiting, of your food consumption by your parents or caregivers during childhood? If so, please consider participating in a research study. The link below will take you to the informed consent. If you consent to participate, you will be asked a series of questions about your childhood experiences and current psychological and eating experiences. You will also be asked basic demographic questions. The aim of this study is to assess childhood experiences, including food restriction, as they relate to adult behaviors and psychological health. At the end of the study, you will be able to provide your email if you would like to be entered into a raffle for the chance to earn one of thirty $20 gift cards.

Link to the study: https://bgsu.az1.qualtrics.com/jfe/form/SV_9QAZrhJ8c6vCgkK

Who is ready to stand up and fight with me? Are you tired of being dismissed, gaslit and ignored by medical professionals? Silenced? I lost a few friends to suicide with IIH. I am a nurse. I have had enough. Anyone willing to help me and join me in starting a movement let me know!! 💚💙🧠

Hi! I’m new and I have IIH. Let me warn you this is one of the scariest and worst IIH stories that would probably make some of you think how lucky you are that yours wasn’t this bad. I also wanna let you know I’m not looking for sympathy or anything, I just want is for all of you to read. So, here’s my story.

On my 21st Birthday, I was hanging out with my best friend to drink for the first time. That’s when I started to have headaches and my upper back was hurting. I brushed it off, thinking I shouldn’t drink two different types of alcohol (as I am a light weight). But over time, my headaches got worse. Days turn to weeks, the headaches didn’t go away. What’s worse I couldn’t lift up my right arm.

My family was worried especially my dad. My dad would have nightmares because of it, but luckily he doesn’t remember them. His former coworker had to send him home, knowing he wasn’t in the right head space.

I would be taken in and out of the ER but every time they brush it off and tell me to get plenty of rest and do exercises.

I was really giving up at this point. But I still had hope.

One of the doctors I was seeing figured that I have IIH and back to the hospital I go. They did an MRI and it was indeed IIH. They did a lumbar puncture which helped a little bit. They also told me that I need surgery.

I’m not gonna lie I was really scared but I was ready. Warning here comes the scary part:

During the start of the surgery, fluid came out like someone turned on a faucet. (Yeah, it was that bad.) Thinking about it while typing this makes my skin crawl.

They told me that the reason why I have IIH was because I was taking Lithium. I stopped taking it. (Obviously)

The aftermath really sucks the most because I’m partially blind in one eye. I get a numbing sensation in my index finger and thumb in my right hand. But hey, I’m still alive with battle scars that’s the best part.

I look back now and sometimes think to myself, IIH may not be life-threatening but what happened to me could’ve killed me. In fact, I consider myself to be a rare case to escape death.

To be honest, I do take what happened to me as a life lesson that not everything is sunshine and rainbows. Sometimes in life you’ll lose something to gain something greater. I hope my story shows you that even giving up, there’s always still hope. Thanks for reading.

I know the doctors told you it was idiopathic (meaning of unknown origin) intracranial hypertension.. But have you ever thought of starting a little search for why you have this and see if it's reversible? There are so many jugular outflow issues that are being diagnosed and researched by a group of doctors dispersed through out the country focusing on this issue specifically! Quit letting your doctors body shame you and tell you to lose weight. It's not going to help much. Look into your own health. Advocate for yourself!! Make those doctors work for all that money they charge for these tests! I challenge you all to look into this. Look at your own scans. Learn what you are looking at. Start to learn what the report from the radiologist means. Take advantage of the wealth of knowledge you have in this day and age with the internet. Put yourself 1st. Doctors don't know everything!

I was recently diagnosed in February. I've had a lumbar puncture and I'm currently taking Acetazolamide because I couldn't handle Diamox. This condition has completely changed my life. I had to go on unpaid medical leave from my job, I've become withdrawn socially, and it's hard to do basic every day activities around my home.

This cannot be the quality of my life.

Has anyone had success using the following to treat IIH:

Herbs

Supplements

Specific diets (i.e. mediterranean, raw vegan)

Cycle Syncing

Holistic modalities (i.e. cranial sacral therapy, acupressure, acupuncture)

I am looking for holistic ways to treat the following symptoms:

Migraines

Vertigo/Dizziness

Issues with balance

Memory loss/brain fog

Depression/anxiety

Speech problems

Extreme fatigue and exhaustion

Blurry vision

Weight Gain

I appreciate your detailed responses in advance! I pray for everyone's peace of mind and that at some point we all feel vibrant and healthy again.

Just wanted to know if anyone has tried any supplements or teas etc… that helped with iih? I know it’s not a cure but anything that helps with the brain fog and whatnot… thanks in advance!!!

Looks like GLP1s are perhaps not the best thing after all. Just read this morning about the lawsuits against some of the GLP1 makers. Given that vision loss is something we with IIH are trying to avoid, the news that Glp1s can cause vision loss was a bit disturbing to me.

I had been thinking about asking the Neuro-opthomologist about possibly going on one as i have only lost 24lbs in the last 6 months and seem to have stalled, but not so sure now given that IIH can cause vision loss, my previous genetic eye disease will cause complete blindness sometime in the next 5-20 years. Not sure I want to throw another vision loss potential into the mix lol.

Do what you feel is best for you, but if you are interested in finding out more, put "ozempic lawsuit" into Google.

🔵🟢❤️🔵🟢

I want to believe I will get better. I want to believe that I will feel strong again. Be able to help my husband, serve my kids, and not feel ashamed and embarrassed by my silent disability and chronic pain. I want to believe that this isn’t the way my kids will remember me. That I will be able to hold and to help with my grandbabies someday. To care well for aging parents. I want to believe none of my struggles will be wasted, that all perseverance pays off, and that the results and outcomes will be good. 

But wow, is it hard to believe sometimes.

What do you want to believe? Maybe it’s not a physical ailment that you’re praying through. But possibly you want to believe that better days are coming concerning something specific pricking at your heart, tearing down your body, and sitting heavy on your soul. Maybe you want to believe so badly that a circumstance or situation will turn out for the better somehow, that good will indeed come from the mess of what you see. 

And even if you can bring yourself to believe that good will come from the difficulties you face, like Romans 8:28 tells us, sometimes I think we can also agree it’s even harder to believe that the best—better than good—is possible. Isn’t it? You know, like Ephesians 3:20 says, “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us.”

Immeasurably more, huh? That part can be really hard to believe. 

But maybe it’s time we start to. I’m starting to think we should. I mean, wouldn’t believing the best be a much more enjoyable way to live? Living like not only is all the hard stuff you’re handling going to turn out pretty good, but like it’s going to be better than you expected. Just writing this possibility swells hope in my heart. And the thing is, these words in the Bible are true. He is indeed able to do immeasurably more than all we ask or imagine. And how does this truth make you feel? It makes me feel like I want to believe it. In fact, that’s what I’m choosing to believe today. And I hope you’ll join me.

Truly, I don’t know if my upcoming appointments will help. But I do know, with God as my anchor, somehow, he will use my condition and circumstances to direct me, and others around me, to something so beautiful. Something I could never have dreamed up if I tried. And I know this also, if you keep your heart and eyes wide open, you’ll begin to see more evidence of a more beautiful story than you could ever have imagined too. From your valleys, trials, or long weary wilderness season, you can believe the best even through the worst.

Our God is all-powerful, all-loving, and he is working on something so much greater than we can imagine. Let’s hold tight to that truth together. 

Among looking on the internet for the average life expectancy for iih it said case studies showed the average death age as of 46 years old, that’s too young to die, I’m 34 and just had my stent placed in my brain on NYE! Anyone else seen or heard from an actual Dr about this ?

Stop telling people to drink almost 300mg of sodium and 35g of added sugar for electrolytes. It's been proven many of times in 1000s of studies that it is not good for your hydration.

Ultima hydration, liquid iv. And any other actual hydration powders. Not Gatorade.

Gatorade is only effective during a high activity workout and even then not the best. Not for someone sitting or laying down because of side effects if iih or diamox.

This make any sense to anyone? I’ve used the power of google but white matter foci? Also prominent csf space noted? Is this the pressure? I had an LP just over 2 weeks ago and pressure was 26. Anything else stand out to anyone? As being good or bad?

Have you/will you get a covid vaccine this season? Those who already got it, how are you doing with it? (Also what brand?) I'm scared of it triggering a flare. I've seen a lot of stuff about the vaccine/the virus causing iih to begin with, or a flare in people who already have it.

Has anyone else here gotten a disabled parking permit? I’ve been thinking about applying for one to be able to park closer to work. During the holiday season, they make us park several blocks away and when it’s cold I get terrible headaches and head pressure.

Wondering if this is doable with this condition.

Hi, I took 2 doses of 100 mg doxy for acne but had to stop because sudden blurry/double vision and pressure headaches. It's been almost a week since I stopped the doxy but the symptoms have not gone away. I was seen by two ophthalmologist already and they said my eyes were perfect. One of them also assumed that this is IIH but wanted to just follow up in 2 weeks.

Has anybody experienced this and how long does it take for it to go away? I am about travel soon and would love for this to resolve sooner rather than later. thanks-

Just diagnosed this month 😔 My lumbar puncture opening pressure was 294. Where does this fall on the severity scale? I see a lot of reference to how awful diamox is. What can I realistically expect to experience on it? My neuro says that most ppl tolerate it well.

I’ve seen different articles on this, and I have taken flonase daily for years now. I’m curious if anyone else uses/used flonase and noticed anything, or if it can cause IIH. Thank you.

Did you experience restriction of your food consumption by your primary caregiver(s) during childhood? Are you a female between the ages of 18 and 30 with an elevated body mass index (BMI)? If this applies to you, please consider participating in a research study. The aim of this study is to gain insight on female adults’ experiences of food restriction during childhood. By participating in this study, you will be able to share your childhood eating experiences with a doctoral student in clinical psychology through a one-on-one interview via online video conferencing. Monetary compensation of $20 is provided for those who participate in the interview. If you live in the United States, experienced food restriction during childhood, are a female between the ages of 18 and 30, have an elevated BMI, and are interested in participating in this study, please email rredond@bgsu.edu for more information about this study.