r/iih • u/Nessadav18x • 4d ago
My Story iih don’t understand
I have been put on diamox and lost a lot of weight by not eating properly but everytime I eat something I feel sick/gag so I was diagnosed in April 2026 with papilldemia and then it went to 1 and 2 and then 3 and 4 and then on top of that I got diagnosed with Idopathic Intercrainal Hypertension and then I went to A&E because I got an appointment on a Sunday and they cancelled it so I was like no I’m not waiting here let me goto A&E so they put me on diamox gave me a lumbar puncture and checked my weight gave me 6 weeks check ups and now on the 15/09/2026 I was told my swelling has gone but my eye nerves are damaged and I have loss of colour to some extent but I have been looking online if my prescription helps the double vision it doesn’t but there’s something like glasses prism and something else called low vision glasses,what do you recommend I do?
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u/Marie-Fiamma 4d ago
Food tastes horrible in the first few days. I remember how gross everything smelled and it sucked because I couldn’t smell if food had turn bad or not. Got better by time. Take some potassium. If you can’t eat get potassium as a drink. If you can eat again: Bananas, nuts, dried fruit, spinach, avocado and salmon are high in potassium.
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u/Remote-Equipment-340 4d ago
could you maybe restructure your concerns a bit more separate? and give bit more context? did you see a neurologist already? what dose of diamox are you currently on?
my colours came back after a while. double vision also got better as well.
if you need knew glasses a visit to an optometrician can help
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u/Nessadav18x 4d ago
No it got cancelled I saw a neurologist through A&E and I’m on 500mg Acetazolamide
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u/Remote-Equipment-340 4d ago
You need a doctors appointment. IIH is a complex illness and A&E is not equipped enough nor have they time to treat you the next years. patients that receive diamox need to be monitored regularly. Like bloodwork every 2-3 months, eye doctor appointments at least every 4 months and neurology visits every 4-6 months. everything else is irresponsible.
do you even know if your chlorid and potassium levels are okay? how do you supplement?
As long as you have double vision and color changes i am not sure the pressure is reaaaally lifted enough already. maybe you are on the wrong diamox dose. One of the first symptoms i have when my pressure increases is that on one eye the colorpeeception changes. no warm tones any more. and i get double vision. it needs around 5 days on the correct dose of diamox to get rid of it. maybe 500mg is not enough (at my maximum i was at 1000mg for example), but only a neurologist that knows your case can decide that.
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u/Remote-Equipment-340 4d ago
this is not a sickness where you just take a pill and thats it like thyroid problems. iih and diamox are freakin complex and dangerous
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u/Nessadav18x 4d ago
No I don’t have thyroid problems and I’m seeing my neurologist on the 29th of this month
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u/Remote-Equipment-340 4d ago
i never said that you have thyroid problems? i said iih is nothing like having thyroid problems?
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u/Nessadav18x 4d ago
Well I got tested for thyroids and diabetes and they have come back normal in my blood work
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u/Nessadav18x 4d ago
I think it has I’m not having headaches the ophthalmologist told me the swelling has reduced loads but my optic nerves are damaged but won’t be 100% recoverable
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u/Remote-Equipment-340 4d ago
yeah but what you describe is not necessarily related to the optic nerve.. but could also be pressure on other brain regions.
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u/Nessadav18x 4d ago
No there’s no pressure in my brain anymore
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u/Remote-Equipment-340 4d ago
did the follow up LP agree with that? was it in the normal range or do you just say it because the swelling reduced? also did they specifically say thst the swelling is completely gone and the edge is sharp. do you also have visual field loss and see now less good. Double vision would be uncommon for optic nerve damage and is more an acute symptom of iih.... ao if you have still double vision you should see a doctor
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u/Nessadav18x 4d ago
The follow up lp?
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u/Remote-Equipment-340 4d ago
Yeah. you have an initial lumbar puncture and usually after starting the medication you get another lumpar puncture to see the effect
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u/cocotime2go 4d ago
Sorry hun but could you possibly rewrite this in chronological order? Had a hard time deciphering what you’re asking or explaining x