New, scary journey - need your advice

Hi fellow IIH’ers

I was reluctant to join one of these groups but figured I’d done enough googling this last month (and hate myself for it after but espesh with this condition doctors can’t tell you s**t so you find yourself having no choice but to find your own info)  -so  I may as well get amongst this and share my experience and see if anyone has had anything similar just because I’ve found no two stories have been the same. Everyone has such different variations of symptoms and experiences. 

When my diagnosis came about I wasn’t even properly aware of any symptoms - it all started in Feb, I went to the optom to get my eyes tested for a pair of glasses just from light sensitivity from work computers and lights.. and it came as a little bit of a shock to me that he noticed the pallipedema (swelling of the optic nerve) and referred me to an ophthalmologist. 

From there the ophthalmologist had me do an MRI and an eye ultrasound. The results from those showed everything clear in the brain so tumours and clots etc were ruled out but the swelling and excess pressure was obvious and was pushing down onto my eyes. So the lumbar puncture was the next step.

By this point, I had done enough worrying and stress googling to diagnose myself with IIH already so I had a gut feeling that was going to be the official results after the puncture. And it was the lead up to the MRI until the puncture (about a few weeks apart) that I truly started to notice my symptoms. I was always so on the go before all this and never correlated my headaches to IIH. I thought it was either due to long work days. Or muscle pain. They weren’t even bad they were more so dull aches. Never even took pain killers for them before this journey even came about. Once I was aware they were soo uncomfortable and pressurised. Always felt wiped. Just so lethargic all the time. I thought I had chronic fatigue all these years but turns out it was just IIH (yay). I’ve had  pulsating tinnitus in my ears for YEARS - I even went to an ENT for it a few years ago and they didn’t seem worried so I just wrote it off as a “thing” that just happens. I’d get sore necks and upper back pain and thought my headaches were due to that, but it was probably the other way around from the IIH all along. Hindsight. It’s a beautiful thing. 

Anyway - did the damn lumbar puncture - honestly who came up with that name - puncture is so graphic and awful sounding  - for those who have done it, you know what it’s like so I won’t get into it because everyone’s experiences are different - (if you want any questions answered regarding the lumbar puncture I’ll be happy to answer if you just ask!) but don’t worry they aren’t AS scary as they sound and honestly it’s better to go in blind and not know what to expect. 

My fears were confirmed when I went back to the specialist a few days ago, a few days after having the LP done, and my specialist confirmed what I already knew I had. IIH. 

I’ve done SO much research on it. Its not even funny. Trying to work out what caused it. All I can think of in my case is being on the pill. My symptoms started after being on the pill the last 5/6 yrs. I’m not obese by any means. The opthal did my BMI and it was normal range. But I can easily admit I’ve put on weight from the pill and I know weight gain can cause IIH. But. Blimey. Makes me feel like my body is so vulnerable and weak if a girl can’t put on a couple of kgs and not have to have a brain pressure condition form. 

I would LOVE to know if anyone else has been on the pill and noticed the onset of this condition? I know it’s not a medically supported theory entirely but I have read quite a few medical articles which do suggest this. 

I’ve now stopped the pill and am on a 250mg diuretic (diamox) 4x a day until further notice for the next 1-2 years. How have others found this drug? I’ve been on it 4 days and I’ve found I’ve had weird flickering speccles in my peripherals on and off. Eyes have felt dizzy - if that makes sense. And I’m getting that pressure ache again (like I was experiencing pre lumbar puncture) but this time not so much in my head but above my brow bone/forehead area. Is this maybe common after LP - it’ll be a week tomorrow since I had it done?

I was wondering if anyone has had similar effects post lumbar puncture/on a diuretic too!?

Sorry for the essay. Just feels like I haven’t reached that relief part yet. Still feeling symptomatic just don’t know if it’s post lumbar puncture of if my symptoms have returned. I know I got drained to a level 18 from being a 30 so.... I dunno. 

Y’all are the only ones who would understand the struggle I’m just terrified of going blind - that’s my BIGGEST concern. 

This has taken over my life but I’m determined to have my little cry now... get my s**t together soon and then soldier the F on once I get some more answers. 

Omg thank you for reading if you’ve made it this far ?????? please reply and share your story with me - especially if it’s similar.

Ps - Does anyone know of any good neurologists inn Adelaide? 

Can’t wait to hear back from people ?? we’re all in this together! 

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