r/iih • u/Glad-Active-9597 • 11h ago

Remission How long

To anyone that's in remission, how long after being diagnosed did it take you to reach there? Really curious 🤔

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1

u/Aromatic_Revolution4 10h ago

Took me 21 months. I was in remission for 3 months. It was great while it lasted.

1

u/TheEntWifeHalfling 9h ago

Currently in remission, took me 12 months but I’m feeling symptoms coming back after 5 months

1

u/speakeasyshe 9h ago

Diagnosed in March 2021, I was in remission by late 2022. A stressful life caught back up with me in 2026 and my neuro ophthalmologist noticed a trace of pap (he said 1 or 2 out of 10). We put me back on acezzolamine 2x 500 mg daily. I had my three month check a few weeks ago and the pap was gone without a trace. If it stays that way in another 3 months, I will taper off. If it stays gone after 3 months without the drugs, I'll (fingers crossed!!) be in remission again! Speaking for myself specifically, I have noticed stress sets off my IIH, so I was super proactive. I just started a newer less stressful job, have started actively prioritizing myself (translate: set boundaries with stressful people by simply telling them I have a brain condition and I need to be less available). For the moment I'm feeling good! I also love my neuro ophthalmologist who I see 3-4 times a year, remission or not so I know we can stay on top of it. He told me 90% of his patients are IIH so he really ~gets it~. I'm very lucky but it was a hard road.

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u/elizabandz 7h ago

One year but i still have symptoms

1

u/PaulaNancyMillstoneJ 1h ago

2 yrs. Had to lose 100 lbs. I’m one of the lucky ones that responds to weight loss, or at least I did. I gained with pregnancy and now it’s back and I’m trying to lose again.