fr0ggie

196d

i recently found out i had IIH in March after an optometrist redirected me to the ER because he thought i had a tumor. i got a spinal tap the next morning, they gave me medication, and during a followup visit they said that they had to monitor it for a year.
i personally never thought i had ANY symptoms, the only thing was that i got a headache at school every day at the same time, but i thought it was because of the lights. the whole thing was crazy, and i really still have no idea how concerned i should be. they told me i could have gone blind if it wasn't caught, but am i supposed to be looking for dangerous symptoms in case i need to tell somebody? has anyone else's experience been similar?

Chronic Nausea and Vomiting

Disturbance of skin sensation

Pseudotumor Cerebri

Headache

Symptoms Involving Nervous & Musculoskeletal Systems

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  • Cress

    194d

    If you’re on medication that should hopefully help! The hallmark symptom of IIH is very intense migraines that are not touched by medication, and are often worse when sitting/laying in different positions. I think usually people say laying down is worse, but it’s the opposite for me. If you start having those, it might be an indication that the medication isn’t helping enough. The vision thing you will notice. Following up with doctors to check the swelling of the optic nerve will mostly keep that under control, but if you have any significant vision changes (specifically papilledema, which I recommend looking up just to keep an eye out), let your doctors know immediately. In terms of medication, it depends on what you’re taking, but I’m on Diamox. That causes tingling/numbness in extremities or on the surface of the skin, sometimes nausea, and sometimes things start to taste bad or metallic (carbonated drinks especially). It’s super good they caught it early though! I started rapidly losing my vision which is why I ended up getting diagnosed, and while thankfully it’s mostly back to normal now, it was very scary!

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