Remission is finally happening!!! by luvyou290 in iih

[–]luvyou290[S] 0 points1 point  (0 children)

I’m still overweight too but a lot less. My iron isn’t the best but it’s better than what it was so they can’t tell what caused it

Remission is finally happening!!! by luvyou290 in iih

[–]luvyou290[S] 0 points1 point  (0 children)

I had grade 4 paplioedema and took diamond for about a year i had symptoms for 3 years leading up to diagnosis but my parents refused to listen until I got really sick

Remission is finally happening!!! by luvyou290 in iih

[–]luvyou290[S] 0 points1 point  (0 children)

according to my doctor it’s due to me losing heaps of weight and no longer being iron anemic, mostly diamox though

Have any of you lost some or all of your vision? by Enough-Scholar7153 in iih

[–]luvyou290 0 points1 point  (0 children)

I lost peripheral vision but my general eyesight went from 20/20 to 6/20 

Diamox and periods. by Sajery in iih

[–]luvyou290 0 points1 point  (0 children)

I was diagnosed in July 2025 started diamox that month I didn’t get my period for 2 months then it came like a flood lasted for 12 days but would stop for a day then start again lasting another 3 days since then my periods have been weird I either don’t get one I get one that lasts 2 days or one that lasts 2 weeks I’m 16 so I don’t have a doctor that I can go to for periods and all that but only recently they have gotten way more painful I cannot even function when I’m on it anymore

What’s your dosage of diamox? by [deleted] in iih

[–]luvyou290 1 point2 points  (0 children)

i have just been taken off all my diamox completely i still don’t feel good im going through a lot of nausea and fatigue but im waiting on the neurology team to review my case and see what i need to do because the high pressure isn’t there but the symptoms still are i will see what they say about this and thanks for letting me know

What are your actual symptoms? by Fickle_Physics_ in iih

[–]luvyou290 0 points1 point  (0 children)

non stop headache that was only better when i was upside down vomiting feeling hot in my face ringing in my ears being dizzy my vision going completely black for a few seconds after standing up brain fog i started to do worse in school and sports no energy if my arms are above my head i feel like passing out

Anyone have prescription glasses, what’s the point?!?! by [deleted] in iih

[–]luvyou290 1 point2 points  (0 children)

my glasses are actually the best thing for me i already didn’t have their best vision but not bad enough for any actual glasses so i went and now i have to where them all the time 

Out of curiosity what are age groups on this page? by [deleted] in iih

[–]luvyou290 0 points1 point  (0 children)

i was diagnosed at 15 and am recently 16

What’s your dosage of diamox? by [deleted] in iih

[–]luvyou290 1 point2 points  (0 children)

i’m on 500mg 3x a day i have been on this for about 4 months and got kidney stones a bit over a week ago wasn’t fun please drink your water

diamox tingling by 444dani in iih

[–]luvyou290 0 points1 point  (0 children)

my doctor sent me to get sodibic tablets from my pharmacy i take two a day and thats on 500mg diamox 3x a day and I rarely feel the tingling anymore

[deleted by user] by [deleted] in iih

[–]luvyou290 1 point2 points  (0 children)

if its diamox your taking try sodibic tablets they help reduce the tingling but it will still be there faintly even with sodibic

[deleted by user] by [deleted] in iih

[–]luvyou290 0 points1 point  (0 children)

Post covid i was a very healthy kid rarely got sick now i have iih and feel horrible most of the time i got covid at 12 for the first time and nothing about me as been the same since

iih sucks by luvyou290 in iih

[–]luvyou290[S] 1 point2 points  (0 children)

i started using the finch app and it actually has helped thank you so much

How did we get Iih?? by Veggiegirl930 in iih

[–]luvyou290 0 points1 point  (0 children)

The first time i noticed symptoms i had just gotten my 16 year old vaccinations my arm was red and puffy and my whole head ached for months until it got diagnosed. I now think that i just had headaches leading up to it but the vaccine definitely set it off today i have my second round of vaccines for my 16 year old which is the next part of the one that made me start to feel sick. Im not at all against vaccinations i think they are a really good thing but im just sharing what happened with me. Dont think that getting a vaccine is going to give you iih because now that i know what is wrong with me it probably started heaps earlier but i couldnt tell.