My partner was diagnosed with IIH in January 22 and it seems the neurological department know very little, so the future feels uncertain.

[Marist]

Hi there,

My partner has Idiopathic Intercranial Hypertension ( I I H ) which is a pressure that builds up in the cerebral fluid and causes vision loss, hearing loss and mobility problems, memory function, just to name a few. The problem we have is that the specialist in the neuro department don’t seem to know very much about this disease, as it is rare and only seem concerned with the swelling behind the eyes (Papilledema - swelling of your optic nerve) which is not at all present in my partners case. She is still struggling with vision problems and daily debilitating headaches and my partner is suffering with hearing loss which is very distressing and was never mentioned as a consequence of IIH by the consultant. I just wonder if anybody has had these issues where they have IIHWOP (IIH With Out Papilledema) is which is NO swelling behind the eyes. My partner has the hearing loss, pulsating tinnitus, so are there any specialist in the area IIH that could give any advice on managing the condition, research trials, and any advice, that would be appreciated, thank you

Maria

[Blackknight1989]

Here is a link to help get you started no one will better advocate for you partner than themselves. My suggestion is get smart quick as most physicians don’t understand our disease or Eve know about the new treatments that have been approved Farxia in the US both Jardiance and Farxia in the UK. Both studies EMPA-Kidney and the Farxia studie show success in stopping or nearly stopping progression of CKD in non-T2D patients with eGFR down to 20. Plus decrease in CVD risk by 34%, decrease weight by average 14 lbs, with almost no side-effects. Here is the link:

kidneyfund.org/all-about-ki...

Quickly, I was diagnosed with CKD stage 4 1996 8 days later due to a mistake by an incompetent doctor I had AKI and multiple organ failure with 9 pages of ekg flatline. Woke up 5 days later spent 6 months in ICU 4 months on the vent. Took me another 6 months to recover and I’m still stage 4 currently. Since that time I remarried raised 2 children owned a small business for 25 plus years. Taken my family to St.Kits, Bahamas, Cancun etc. Thus it is a life altering diagnosis does not need to be a life changing diagnosis. I realize not the same condition but maybe will get you started with the importance of educating you and your spouse. It is a must take the time to do it. I wish you and your partner my best on this journey!

[Mad-about-animals]

Hi I was diagnosed with IIH 13 years ago and still no-one really knows much about this horrible illness, I have had 38 ops where my shunts have blocked, broke, just stopped working and brain infection. I'm in the UK and a very small charity called IIHUK has a lot if information about this illness on their website, have a look at it if you can x