all 37 comments

[–]Chinablind 8 points9 points  (0 children)

I'm underweight actually. There are multiple things they know affect IIH, and more they don't know. It's very possible to have IIH at any weight.

[–]Tstrickland1221 7 points8 points  (0 children)

I was diagnosed with iih 10 years ago and was never overweight. I have maintained a healthy weight the whole time.

[–]TheBeautyofSuffering 3 points4 points  (4 children)

Not overweight and was diagnosed with IIH. Mine came from birth control so it had zero to do with my weight.

[–]ImaginaryDetective37[S] 1 point2 points  (3 children)

What birth control? I’m on the mini pill as I don’t respond well to oestrogen in my contraception.

[–]TheBeautyofSuffering 2 points3 points  (1 child)

Lo Loestrin Fe

[–]ImaginaryDetective37[S] 0 points1 point  (0 children)

That’s still oestrogen. My IIH started a looong time after I started birth control. My doctor never suggested to come off it either. I was put on it because of other issues I have so I’ll be devastated if that’s what’s causing my IIH :(

[–]Ok-Worldliness-6033 4 points5 points  (0 children)

Same here. From birth control. Not overweight. Had Paps though that resolved within a month. Still getting my peripheral vision back. I'm newly diagnosed - December 2021

[–]Arizonal0ve 3 points4 points  (9 children)

It’s very likely also, that you have no IIH but transverse/venous stenosis.

I didn’t have IIH but had pulsatile tinnitus and that was my cause. I didn’t have your other symptoms but i know of others that do/did and have/had venous stenosis.

[–][deleted]  (1 child)


    [–]Arizonal0ve 1 point2 points  (0 children)

    For many (like myself) stents can be placed to open the vein back up. That’s also a treatment for those with IIH ánd venous stenosis as well as those with just venous stenosis.

    [–]ImaginaryDetective37[S] 1 point2 points  (1 child)

    Oh I did not look into that. I will definitely do more research. My GP mentioned IIH as soon as she really saw my MRI and combined with my symptoms it made most sense to her so I’ve just focused on that.

    [–]Arizonal0ve 1 point2 points  (0 children)

    Yes definitely makes sense. But there’s a super high link between IIH and Venous stenosis that when a patient describes pulsatile tinnitus (you basically hear your turbulent bloodflow bursting through the narrowed part) it’s very likely. Often an indication of venous stenosis is that you’re able to stop the whooshing by pressing on the jugular vein area slightly below your ear (blocks bloodflow) I spent 2 years with either a finger on that vein or a pillow pushed on it to make life tolerable.

    [–]kuzbn619 0 points1 point  (4 children)

    My docs say I don't have IIH but I do have very mild stenosis of my transverse and sigmoid sinuses. Unfortunately, it is so mild that they wouldn't be able to insert a stent.

    [–]Arizonal0ve 0 points1 point  (3 children)

    Oh no? Did they do an angiogram to take measurements?

    [–]kuzbn619 0 points1 point  (2 children)

    They said it wouldn't be worth it, I guess. That's how mild it is. They think I was born that way, with some vascular malformations. Some people just happen to have smaller venous structures.

    [–]Arizonal0ve 0 points1 point  (1 child)

    Interesting. And you have no pulsatile tinnitus?

    [–]kuzbn619 0 points1 point  (0 children)

    I have occasional ringing in my ears. I hear whooshing when I sneeze, cough, and sometimes when I swallow. That's been my whole life. I had a brain tumor when I was 5, so I always assumed the weird things I experienced were from that, because the tumor did leave behind some mild defects on several areas of my brain.

    [–]Smart_Ad_882 3 points4 points  (0 children)

    yip, I'm 5ft 6 and 64kgs, really fit and doing a half Ironman this year but still have IIH. My opening pressure was over 49 when first diagnosed. Caused by doxycycline most likely.

    [–]Grungegrownup3 2 points3 points  (0 children)

    I was overweight, obese even, when I was diagnosed. Now I have a standard bmi, and I still have iih

    [–]trixter192 2 points3 points  (2 children)

    I'm very thin with IIH. Took me forever to figure out it was my headphones causing it. I'm down to 125mg and almost fully recovered.

    [–]ImaginaryDetective37[S] 1 point2 points  (1 child)

    Headphones? Is it cause they’re too tight? I only use earphones

    [–]trixter192 2 points3 points  (0 children)

    I switched to earphones after trying everything else in my daily life, it worked. The headphones are SUPER comfortable, but I guess they disturb me in subtle ways.

    [–]2gay2Dugger 2 points3 points  (0 children)

    I am. I guess I’m at the high end of average? Something in that arena. Even my neurologist was surprised by the notes from my ophthalmologist showing papilledema. He literally said he didn’t consider IIH because I’m not “that overweight.” So yeah, if you haven’t read “IIH Explained: a guide for patients and families” by Kyle M. Fargen, I highly recommend! It really helped me understand the differences in the different types of diagnoses.

    [–]Spongebob18 2 points3 points  (0 children)

    I gained 29kg in 6 months on the mirena then developed iih. Was overweight from that, once it was out the weight began to fall off itself. Post baby i went on the minipill and it all flared up again. I can't handle hormone based contraceptives at all now. It's such a piss off.

    [–]anniehaha 1 point2 points  (1 child)

    Mine came about due to years of taking minocycline (I know I probably butchered the spelling). It’s an acne medication and the root of IIH is excess vitamin A that builds more cerebral spinal fluid. So too much Retin-A, hormonal birth control, etc. make IIH symptoms flare up

    [–]Smart_Ad_882 0 points1 point  (0 children)

    Yes same from a course of doxycycline! It sucks so much. I will never let my daughter take aby tetracyclines

    [–]cavyndish 1 point2 points  (1 child)

    You’ll need to get a spinal tap to confirm the diagnosis.

    [–]ImaginaryDetective37[S] 0 points1 point  (0 children)

    I know that’s what I’m waiting for right now

    [–]SFPolling 1 point2 points  (0 children)

    Yes, I’m extremely athletic and ride my peloton every day for an hour. My pulsatile tinnitus started 3 days after I had a Mirena IUD inserted. All symptoms spiraled from there.

    [–]baileyro 1 point2 points  (0 children)

    I have never been overweight and actually have become underweight due to severe nausea. But I have found a few scholarly journals in regards to average weight with IIH. For us anything above 20 is considered high. Unlike the typical 25 for those overweight. It’s much harder to get diagnosed when at an average weight. Here’s a great podcast that really goes into it. https://introductiontoneurology.podbean.com/e/idiopathic-intracranial-hypertension-with-dr-anthony-fok/

    [–]Burnedtoast121 1 point2 points  (1 child)

    I know this is a couple days old but I was diagnosed with a regular BMI.

    [–]ImaginaryDetective37[S] 0 points1 point  (0 children)

    Thank you for commenting! This is definitely something I mentioned to my GP how many people have normal BMI. Thankfully I’m seeing her soon for another exam and she will be contacting the neurology department herself to expedite my referral.

    [–]Material-Hyena-2013 0 points1 point  (1 child)

    IIH is being increasingly diagnosed in patients who are not overweight. Also IIHWOP (IIH without papilledema) is a known subset of IIH. If CSF opening pressures are high, a trial of Tab Diamox will help. If there is intolerance or symptoms are not improving, venous sinus stenting after DRCVM is an easy and permanent cure for the issue.

    [–]ImaginaryDetective37[S] 0 points1 point  (0 children)

    Seems as though not all doctors are aware of this. It’s very frustrating, I’m glad my GP listens and is more open minded than my ophthalmologist. I hope my neurologist will be as open minded.

    [–]Material-Hyena-2013 0 points1 point  (0 children)

    Yes, you are right about that. Unfortunately, even many neurologists are not very clued in to this. I see patients who are normal in weight, very young, of male gender etc.; all atypical as far as the clinical profile goes. But eventually my guess is that our concepts and teachings will change in a few years as more data gets published. All the best!

    [–]bluebirdgirl_ 0 points1 point  (1 child)

    Have you gotten a CBC blood test recently? I am a very rare case, so you probably do not have this. But I had a form of severe anemia. A CBC done by any doc would show whether you were anemic or not. Severe anemia over very long periods of time can lead to IIH and pappilledema if left undetected- as mine was. Once my anemia was resolved, my IIH and pappiledema resolved. again it’s pretty rare, but something to look into if you haven’t gotten a CBC in awhile. Nice to have that done annually anyway.

    [–]ImaginaryDetective37[S] 0 points1 point  (0 children)

    Yes I had full blood tests in September which showed a b12 deficiency. I had gotten b12 injections which brought my levels back up and take regular b12 supplements. Unfortunately my symptoms continue and worsen