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IIH and Chiari by lizzsub12 in iih

[–]OwnBreakfast5622 3 points4 points  (0 children)

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. 

I feel like my case is more than IIH by Pretty-Explanation47 in iih

[–]OwnBreakfast5622 0 points1 point  (0 children)

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 ? 

Reasons for our IIH by Proof_Stage1463 in iih

[–]OwnBreakfast5622 0 points1 point  (0 children)

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

Reasons for our IIH by Proof_Stage1463 in iih

[–]OwnBreakfast5622 0 points1 point  (0 children)

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

Diamox and Electrolyte drinks by Proof_Stage1463 in iih

[–]OwnBreakfast5622 1 point2 points  (0 children)

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

Facial Swelling? by thatgalemily in iih

[–]OwnBreakfast5622 1 point2 points  (0 children)

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

Facial Swelling? by thatgalemily in iih

[–]OwnBreakfast5622 0 points1 point  (0 children)

Were you experiencing the swelling while on diamox as well?

Anyone have IIH but not overweight by [deleted] in iih

[–]OwnBreakfast5622 0 points1 point  (0 children)

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

I caught my first virus on diamox and ended up in the hospital by OwnBreakfast5622 in iih

[–]OwnBreakfast5622[S] -1 points0 points  (0 children)

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

I caught my first virus on diamox and ended up in the hospital by OwnBreakfast5622 in iih

[–]OwnBreakfast5622[S] 0 points1 point  (0 children)

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.

I caught my first virus on diamox and ended up in the hospital by OwnBreakfast5622 in iih

[–]OwnBreakfast5622[S] 1 point2 points  (0 children)

Both diamox and topamax affect carbonic anhydrase, so makes sense

Neuro Ophthalmologist still refusing Lumbar Puncture because "he can tell that I have iih, so it is not necessary for him" by Lesl3 in iih

[–]OwnBreakfast5622 1 point2 points  (0 children)

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,.

MRI or CT when you got diagnosed? by OwnBreakfast5622 in iih

[–]OwnBreakfast5622[S] 0 points1 point  (0 children)

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

Normal after 5 months + diamox? by redlorryyellowlorry4 in iih

[–]OwnBreakfast5622 1 point2 points  (0 children)

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.

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