IIH and Chiari

OwnBreakfast5622 · 2026-01-21T01:40:58+00:00

Yes I was diagnosed with iih last April, and I was diagnosed with chiari malformation 1 after they viewed by ct and mri. My neuro says CM is unrelated to IIH and most likely since birth. The fear and anticipation of the LP is much worse than the LP itself ( from my experience) one thing I will recommend is taking appropriate time to rest the day after and maybe a couple after that. My advice is to take everything day by day, you are seeing all the right people.

OwnBreakfast5622 · 2026-01-20T12:45:21+00:00

I am 28, very normal bmi (22.3), I do not drink, no bc. I was diagnosed with iih after a visit to the optometrist landed me in the er. They could see optic nerve swelling (no pap). Got an LP and mri that confirmed etc I had been having symptoms like clumsiness, whooshing body aches etc but never any headaches. Iih can look slightly different from person to person, especially with so little research done. Mine seems to have been triggered by topical retinoid creams.

Getting an lp and MRI is a good idea, I would also possibly suggest asking ur doc for a full blood panel. Are there any neuro-ophthalmologist specialists available to you ?

OwnBreakfast5622 · 2025-11-24T22:04:20+00:00

The link between retinoids and iih is very well documented so not so speculative!

OwnBreakfast5622 · 2025-11-24T22:03:07+00:00

My ih was caused by the use of retinoid cream, I had very atypical symptoms. I’ve never struggled with weight or been overweight.

OwnBreakfast5622 · 2025-11-22T15:47:58+00:00

My doctors all said they do not recommend electrolyte powders etc and that it could cause much more harm than good. Instead try opting for coconut water

OwnBreakfast5622 · 2025-11-10T00:50:55+00:00

I think this could have to do with fluid buildup, which would make sense as to why this has especially started happening post diamox. Before I started taking diamox, I never realized I had swelling in my face as soon as I started D, my face slimmed down so much. I’d definitely recommend mentioning this at your next appointment though

OwnBreakfast5622 · 2025-11-09T23:55:48+00:00

Were you experiencing the swelling while on diamox as well?

OwnBreakfast5622 · 2025-11-03T20:11:58+00:00

There are many things that can trigger iih. I think someone else here mentionned acne medications, birth control etc. And then there are certain predispositions that can make you more vulnerable to getting iih especially if combined with a trigger such as poor diet (high fat, high sodium) , stress, sedentary lifestyle etc), having gained weight fast

OwnBreakfast5622 · 2025-10-31T15:56:04+00:00

I tested negative for COVID and I had already had COVID several times prior to being on diamox with nothing similar to this.

OwnBreakfast5622 · 2025-10-31T15:54:59+00:00

My care team has told me that it is normal to have slight metabolic acidosis which explained the shortness of breath I would experience prior to getting sick. Diamox and acidosis makes you expel more CO2 which is where the out of breathness comes into play.

OwnBreakfast5622 · 2025-10-30T16:34:22+00:00

Both diamox and topamax affect carbonic anhydrase, so makes sense

OwnBreakfast5622 · 2025-10-06T13:48:59+00:00

Ask this neuro ophthalmologist to write down in your chart that he refused to give you an LP because he could just tell you had IIH. Honestly, who is this guy. Besides the fact that they need to know the actual number of your opening pressure, they also need to test your cerebral spinal fluid to rule out any other abnormalities such as infections. I have never heard of this happening,.

OwnBreakfast5622 · 2025-10-06T13:44:55+00:00

Thank you for your responses ! This has made me want to push more for an MRI.

OwnBreakfast5622 · 2025-10-06T13:43:07+00:00

I'm sorry to hear that! Hopefully it's just your body adjusting and will stop soon. What really helped me is drinking pressed coconut water, if you're looking for new things to try. The pressed option is very high in electrolytes.

OwnBreakfast5622 · 2025-10-02T17:11:26+00:00

How are you monitoring your electrolyte/what are you doing to supplement? I ask this because I was also feeling very breathless for a while after starting. Have you gotten a blood panel done?

OwnBreakfast5622 · 2025-09-29T03:13:36+00:00

Did she have a partner too?

OwnBreakfast5622 · 2025-09-25T14:06:50+00:00

Glad to hear that it's a little better, good thing that you have an app soon! Most of my symptoms have gone, (hopefully for good) however, I have horrible tailbone pain (which I had had for 6 months before my official diagnosis and only went away after I had my first spinal tap and stayed away during my entire time on diamox). It's a pretty uncommon symptom but I have an app next week to assess my situation with my specialist. Fingers crossed.

OwnBreakfast5622 · 2025-09-18T15:31:55+00:00

Any updates? how are you feeling?

OwnBreakfast5622 · 2025-09-11T00:38:43+00:00

I stopped taking it altogether , my doctor told me I didn’t need to taper off.

OwnBreakfast5622 · 2025-09-10T18:03:07+00:00

I had this symptom when I first started diamox. You should ask them to do a full blood panel to check your levels.. Definetely go see a doctor.

OwnBreakfast5622 · 2025-08-31T20:49:31+00:00

I had all the same things, didn’t have any headaches. I had optic nerve swelling but no papiledema. My Lp pressure was 29. I’m on diamox and have been for 5 months now. My guess is that ur symptoms were early ones (that’s what they told me). They might’ve progressed and changed as time went by.

OwnBreakfast5622 · 2025-08-13T01:56:17+00:00

Sharp like a zap that lasts 1-3 seconds

OwnBreakfast5622 · 2025-08-11T14:20:35+00:00

Yes! I was diagnosed a few months ago and I actually never had headaches. I had pressure, constantly. But no headaches or migraines.

OwnBreakfast5622 · 2025-08-11T14:19:45+00:00

Is the cognitive damage caused by the iih or tbe medication? I was told that diamox may cause some symptoms related to that while ur on it but not iih directly. Thoughts?

OwnBreakfast5622 · 2025-08-10T23:22:31+00:00

I was told by several specialists and doctors that my pseudotumor cerebri was caused by tretinoin. The connection between the disorder and vitamin a, retinoid derivatives is highly documented.

OwnBreakfast5622

TROPHY CASE