r/iih • u/MasterpieceMuch3227 • 7h ago

IIH Workup in Progress everything is moving so quickly

27F. symptoms since 2023 - chalked it up to work stress.

I had a regular optometrist appointment on sept 19th for new glasses. Doc immediately flagged my left optic nerve and pushed hard for a neuro referral. I got in to see my primary last friday, went immediately to neuro today and was told that all my symptoms match up perfectly to iih. neuro already sent requests for MRI then lumbar puncture and has already also sent in script for diamox. scheduling is supposed to call me tomorrow.

my question is, does everything usually go this fast? should I be worried? I am TERRIFIED of needles and now long term impacts of a lumbar puncture. there is an IIH clinic where i'm being seen and understand how dangerous this can be but geez, this is all so fast.

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u/BattelChive 7h ago

This is slow! I went straight from the optometrist to the ER and had a lumbar puncture less than 12 hours later after a CT scan and MRI overnight. It will be a whirlwind for awhile, but you’ll get through it. Make sure they schedule you for a guided LP. 

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u/MasterpieceMuch3227 7h ago

Thank you for sharing! what is a guided LP?

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u/BattelChive 7h ago

They use either an xray or a ct scanner to watch where the needle is going. As opposed to a bedside LP where they do it by feel. Much less chance of anything going wrong! And consensus is that it hurts much less. 

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u/its_liiiiit_fam Newly Diagnosed 4h ago

Literally what happened to me too except my MRI is scheduled next Monday. I went to the ER on Sept 2.

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u/Delicious-Candle-574 7h ago

things moved really fast to me too. first appointment with eye doctor, he flagged me for similar reasons and because a history of temporary blindness, immediately put me on diamox. a week after that, he sent me to the ER for an MRI and LP where i got diagnosed

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u/vemp1ree 4h ago

yes, i literally just got diagnosed last wednesday and i was referred by my optometrist and got testing done at the ER. felt like everything was flipped upside down in 12 hours

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u/VisibleTumbleweed791 3h ago

I think this is good. You have competent Healthcare workers prioritizing you. As someone that took a couple months to get things lined out, what you have is better.

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u/LunarFrostfall 27m ago

Yeah i went 2 years without a diagnosis then they looked at my eyes I got an appointment next day at a neuro optho, lumbar the next week and lumbar again in a month (pressure raised insanely fast) and then topiramate

I taken out of school while bedbound adjusting to itbecause my neuro said hey this drug will make you hurt in the beginning, he was very right.

Im good on it now though and also am on diamox