diagnosed with idiopathic intercranial hypertension

[annaly]

has anyone here suffered or is suffering from iih i am new to this group and have yet to find someone who has this condition to talk to

[ARamamurthy]

First check up B.P. after two or three days check up eye testing including eye ball pruser the eye spealist treet that. no use salts and other fast foods used normal food only .use butter milk suffecently and give rest to eyes.

[Gillian9]

Hi, I was diagnosed with Benign Intracranial Hypertension, which may be similar, quite a few years ago, this was along with my Lupus and other problems. I was referred to the National in Queens Sq. London and given lots of different painkillers, Gabapentin and paracetomol were the best combination for me. I was also given morphine for when the pain was really bad. I do know that they drain the fluid off for some patients but this wasn't an option for me due to other problems. Hope this helps.

Gill

[PickledGinger]

I'm sorry to hear about your diagnoses. I was diagnosed with benign intracranial hypertension along with lupus 10 years ago and it is quite frankly hell to live with. my condition is managed by a drug called acetazolomide (Diamox) which drains the fluid from the back of my eyes and it does help. However I still need regular lumbar punctures when it gets really bad (had 9 so far) and my neuro team are fantastic and they have me on an SOS system where I call them for help when I know I need an LP. They wanted to do a shunt but it wasn't recommend dies to lupus issues. Anyway there is no painkiller that comes remotely close to touching the pain so I have to find other things to focus on, I'm an artist and I use that as my pain control but do speak to your doctors to see if they can give you some medication and ask for a referral to a neuro unit if you haven't already. All the best.

[annaly]

thank you everyone i have nuro teama well as i see the eye specialist team as well before i got diagnosed i had suffered for a month of double vision and cronic headaches and thobbing in my ear which would come and go my gp was such a waste of time and she had no idea what she was doing so because the double vision got so bad i thought i had something wrong with my eyes so booked myself in to spec savers only to be rushed to dunedin hospital to the eye department their when i got their he knew straight away what i had wrong with my eyes i got right 6th nerve palsy as that eye was facing towards my nose he then referred me over to nurology which i had mri and body tests etc giving off tumour symtoms at the time so they out rule that and i was left with iih

im on the medication you ladys said you were on and im having my 3rd lp on the 26th jan this has been one hell of a emotional ride as im a solo mother as well.

were any of yous told to lose weight?

were any of yous told the gastric band is a number one priority in a case like this? as my consultant has told me this i first spinal pressure taken was 52

do yous all have a dietritians as well?

thank yous