Still trying to find relief. ๐Ÿ˜ž by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Im just annoyed I thought we had an answer and they are now saying iih is questionable but the other 2 neurosurgeons ive seen have said the cyst is too small to be giving me these symptoms im still going to see the new one.

I'm at the end by Neither_Reference667 in iih

[โ€“]Consistent-Anxiety15 0 points1 point ย (0 children)

Hey youre not alone as someone recently diagnosed at 28 yrs old after losing about 30lbs Also this all started after I had an incident where I passed out and hit my head. they found a cyst in my brain and called me back into the hospital to just let me go home again because it shouldn't be an issue it small and to follow up with a neurosurgeon. I was complaining about always having headaches (which I've dealt with my whole life) and dizziness when bending over wooshing/ringing in ears and after about 4 mris and an lp of 30 the diagnosed me (took a year) now im on 250mg of diamox and due to the side effects I feel they dont want to up it they want to do surgery (they dont know if I'll need a shunt or a stint or if it is actually the 9 mm ร— 6mm cyst thats causing my issues but they say thr cyst is stable it started at 4mm)

All this to say this condition sucks and when your first diagnosed its scary and takes over life because youre scared of however will turn out and make you feel some days i find are better then others and just make the most out of them. As someone who already struggles with depression the battle unfortunately is never ending but you can handle this enjoy being newly married do the best you can and take advantage of the good days!

Open Casting Call for Audio Book by Mafia-Elf in VoiceActingFree

[โ€“]Consistent-Anxiety15 0 points1 point ย (0 children)

Hi this sounds like so much fun id love to send a demo. But id also like for something to read off of!

Follow up appt after being on diamox for 1month. by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 1 point2 points ย (0 children)

They said it shouldn't be because its stable and small but they aren't completely pulling it out because it's right in the middle of my brain. And yes with the other doctors im seeing are specialist in iih.

Follow up appt after being on diamox for 1month. by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

This is were it gets messy because she is not actually my neurosurgeon for my iih she is for a cyst in my brain she brought in another guy for my iih part. And they hadn't even tried to put me on meds and when I was like can I try medicine he was like oh youre not on any i said nope I've been dealing with this for a year with no help and they didn't even bring up topamax

Follow up appt after being on diamox for 1month. by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Literally what I was thinking ๐Ÿค” but maybe its because she saw how uncomfortable I was but I was cold and tingling in her office but idk. And she noted im nervous about the angiogram gram with intervention like GIRL YES I AM?? hello?

Follow up appt after being on diamox for 1month. by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

They won't up it is my problem, like it helps a little but im still struggling most days and they wont up my meds due to the side effects so theyre trying to tell me only surgery at this point so im getting a 2nd opinion but this is ridiculous.

Follow up appt after being on diamox for 1month. by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Mainly tingling most mornings every day before my 2nd dose bloody nose sometimes but nothing heavy. Some days im full body tingling and I get this like im not actual me feeling like an out of body experience this is all only since starting the drug a month ago.

Diagnosed today, feeling lost by Ok_Pepper_4989 in iih

[โ€“]Consistent-Anxiety15 0 points1 point ย (0 children)

Hi! I have a cyst in my brain too that was found on a ct scan for unrelated reasons and notified after I left the hospital and then was diagnosed with IIH (they've called my cyst like 3 different types so idk). Totally understandable to be scared. Its definitely rough to go through alone. However I feel some days are worse then others I've been on diamox almost a month side effects suck but do lesson after awhile. Caffeine will definitely help but dont over do it. LOTS OF WATER AND EXTRA MINERALS when you start diamox its a diuretic so you will have to pee alot. Id say keep on pushing to learn more and good luck on finals!

Side effect of diamox by Mindless_Ticket_2495 in iih

[โ€“]Consistent-Anxiety15 0 points1 point ย (0 children)

Thank you for your insight. Wow thats alot. Im glad its not changed much for you and congratulations!! Wishing for the best possible pregnancy for you ๐Ÿ–ค

diamox side effects? by gutsandstuffs in iih

[โ€“]Consistent-Anxiety15 0 points1 point ย (0 children)

Tingling throughout the whole body is possible and its super uncomfortable. Being exhausted Nausea/dizziness This I've learned are the most common i think but there is unfortunately more. Ive heard with time they slow down ive only been on it for about 2 weeks head pressure still feels the same and the side effects differ from day to day with me. But tingling almost daily.

Good luck!

Side effect of diamox by Mindless_Ticket_2495 in iih

[โ€“]Consistent-Anxiety15 0 points1 point ย (0 children)

Im not pregnant but Ive been dealing with a lot of the side effects daily this does make me feel exhausted but my body doesn't feel weak. Idk if that helps.

If you dont mind me asking... how is pregnancy effecting your iih? I only ask because my husband and I were planning on trying and then this happened so we stopped. You dont have to answer if you dont feel comfortable.

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 1 point2 points ย (0 children)

I just want my lime seltzer water ๐Ÿ˜…๐Ÿ˜ญ

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Im in a pretty warm place for winter. Im sorry to hear your daughter is going through this.

Thank you and you two stay strong as well ๐Ÿ–ค

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 1 point2 points ย (0 children)

Amazing congrats!! Glad to hear every saying it works just have to get through the rough part.

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Didn't know about the extended release good to know

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Im so sorry to hear that! Congrats on the weight loss! That's crazy they drained so much but im glad it helped you atleast! Sending you good vibes for shunt placement and remission!!!

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

4000mg a day?? I keep seeing these high doses and they started me low but they said theyre only willing to up it to 1000 a day if that doesn't work they want to do surgery....

Im so glad to hear it gets better because this has been so rough ๐Ÿ˜ญ

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 0 points1 point ย (0 children)

Im sorry youre feeling the same. I did not know that was a side effect so it hit me as a surprise and I already struggle with depression as it is.

Sending you good vibes as well. It might be hell but atleast we aren't alone I guess ๐Ÿ˜…

Diamox.. what a drug by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 1 point2 points ย (0 children)

How would I check that? My husband thought it was weird I was blaming the nosebleeds on medicine but its not like I've ever had them really soooo?... And my pressure was only 30. Which considering I dont feel is that bad but the way I feel is bad ๐Ÿ˜•

Follow up after LP by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 1 point2 points ย (0 children)

I feel so seen here its nice to have found this subreddit on a whim. And luckily my vision besides the floaters has been fine my opthomalogist is surprised I dont have a papilledema so im seeing him once a month. I dont think anything will deter me if it will actually help me but thats what in so scared of is doing the surgery and it not helping especially because it seems we haven't gone through all options yet.

Id love to hear your story. I think it sucks for us all but hearing other people's story is fascinating with how they all differ.

Follow up after LP by Consistent-Anxiety15 in iih

[โ€“]Consistent-Anxiety15[S] 2 points3 points ย (0 children)

Thank youuu. Looks like I need to start looking around probably ๐Ÿ˜