Just been diagnosed

Hi Laura, my name is Amelia. I was diagnosed when i was 17. I am now 28. I had terrible symptom and an opening pressure of 38 during the lumbar puncture. Over the course of a year I tried diamond, acetazolomide, had about 6 lumbar punctures and then they decided it would be best to do a limbo peritoneal shunt as my quality of life was s**t and my sight was deteriorating. That was 11 years ago and my shunt has been amazing.. no symptoms, no pain and able to work and travel and have recently had my first baby. Keeping my weight down has helped aswell. I started getting symptoms back a few months ago and after a week in hospital they have discovered my shunt is failing so it will need to be replaced. But despite this I would absolutely reccommend the shunt.. these symptoms are horrendous and quality of life is so poor when they aren't under control. I would get a really good Neuro surgeon and push for a shunt!

Hi Laura, I myself was also just told I have iih. After reading some posts on here I think we all have one thing in common, doctor's don't tell you much and they usually always say lose weight. For me that's been the hardest pill to swallow because prior to October of 2016 I was actually on my way to getting in shape when I tore my ACL. From there I've had complications which lead to depression and weight gain and now this. So i don't know about you but now I know I have no choice but to lose weight cause I refuse to do everything in my power to avoid any vision loss. I think that's the part that scares the crap out of me the most. Again docotors don't tell me anything other than they are here to help save my eye sight so I fear the worst case and pray for the best. Anyways I had went to the hospital had a spinal tap done csf pressure was 29 I believe they brought me down to 16. I got sick on the table so I think my blood mixed with my fluid and I ended up with the lumbar headache. Fyi worse headache than when I went into the hospital. I didn't realize this until I was finally able to get up and walk out of the hospital the following day so I was stuck in bed for a whole week before that thing went away. Guess I could have went back for a blood patch but who likes going back to a hospitals waiting room. I'm back to getting the pressure again so I have a feeling I see another spinal tap in my future. I'm reading alot about the shunt but that still sounds scary to me. I guess if I get to a point where my vision starts going I will do whatever it takes. I do work on a computer all day and I find my eyes start to get blurry or maybe that's why my kneck has been hurting more. I hate to say it but it's nice to see I'm not alone out here. My family and friends have no clue what I'm dealing with but reading these posts I see other people get it. I hope u can find some comfort in knowing there are other people out there just taking it one day at a time and maybe we can all just start putting out what's working or not working for us. Like if u go to a hospital for the spinal tap make sure they let u get up and walk around before they discharge u. This will tell u if u have the lumbar headache. I was stuck in bed rest until I signed the papers and I didn't start to get the symptoms until we were walking to the car. Lesson learned on my part. Hope all goes well for you and most importantly you have a great support system!

I have also been diagnosed with IIH. I was diagnosed at 17 and I am now 19. I recently had my third lumbar puncture with my CSF pressure hitting 50. I believe they’ve brought it down to 18 but I haven’t been able to keep food down with this awful migraine and I just feel awful. My neurologist is looking into getting a shunt put in but now I’m awaiting an MRI. I lost over a stone and a half and it didn’t help, so even though I am overweight it’s not always down to that. 

Hi Laura,

I was diagnosed with IIH in 2013...I was so afraid at first...but there is no need to be ...there is nothing to be afraid of...take your medication and make sure you go for your lumber punctures when your suppose to..I think it scares us at first because it's our brain! Of course it would...but really and truly there is no need....

Hi Laura I was diagnosed in November with IIH. I kept getting told it was just migraines I was having until the opthomologist (if that’s how you spell it) found my optic nerves where swollen as I lost vision in my right eye. I had a CT scan and they found a lot of fluid around the brain so I had my first lumbar puncture. That worked fine for a week and then I was back in hospital again with the same problem so I went back and got another one. I’ve had 3 lumbar punctures now and I now have a VP shunt fitted to save my sight in my eye as it was deteriorating rapidly. I’m 25 and never heard of this condition until I was diagnosed it all happened so fast! I hope you get treatment you need quickly as it’s not a nice condition to be waiting around with.

Hi Laura

I'm also 25 and diagnosed officially with this last week after 2 months of tests and waiting.

I understand completely HOW scary it is - it's your head.. and most importantly it's the worst case scenario of losing your vision - it's okay you are not alone in being scared.

Ever since the optom noticed my swollen optic nerve (pallipedema) in just a routine glasses appointment, this was the start of a very emotional journey for me. I did a lot of googling after that appt and basically diagnosed myself with IIH. I received the official diagnosis 2 months later.

I wasn't even aware of my symtoms before this glasses appt before he alerted me to the swelling... it was literally after that I realised wow okay yeah I do get headaches, I have had pulsating tinnitus in my ears for years, I get neck pain, I get lethargic.... I just always wrote it off as tiredness or anxiety never correlating them to this, and chugged along my merry way.

Within the last 2 months I've had MRI, ultrasound, lumbar puncture (drained me from 30 to 18) and was put on diamox a few days ago actually which I've been told to stay on for 1-2 years... :O

Strangely enough, I'm experiencing some peripheral vision problems. I'm getting flickering of light every now and again. Strangely - I never had vision problems BEFORE I was drained to a healthier level. Go figure. My post-lumbar headache seems to have subsided but I still just feel off. May be from the medication. I don't know.

Do you always just feel confused??? Like, not one story is the same. Everyone has different experiences. No one knows the "cause" it could come back, it could not.

I wouldn't even call myself overweight. I have put on weight from being on the pill for 5 years. I have also read some reports on the pill being a cause for IIH.

Are any of you ladies on the pill too?

I stopped that now incase it was - basically doing anything to prevent visual loss.

Basically, my advice, from someone who's just as scared as you... I've done ALOT of research... I'm keeping my doctor informed of any symptoms that alarm me... basically I'm trying to keep on top of it.. and trying to not let it consume my life.. which is hard because it has.

I wish you all the best.

You are not alone.

Hi Laura what are u diagnosed for and plz don't be scared read about it on the net if ur talking about iih then just prepare urself mentally I never new or heard about iih but are always finding ways trying new ways to make it easy and i believe we can once we accept nd find ways I myself are much better now after reading about it soo much trying to understand it.