Hi, my names Jade, I'm 20 and I'm from the UK. I've had IIH for 15 weeks now.. I have an appointment with my neurologist again on the 18th June, making it around 5 months since I got the diagnosis of Idiopathic Intracranial Hypertension. 
I have problems with my vision too, where it goes blurry and I have to refocus, but it's mainly in my right eye that this happens. I also have tunnel vision in my right eye.. It's horrible! I haven't been able to drive, read, etc, do anything that I enjoy doing, and it's driving me mad :(
The main reason why I'm writing on here today is because I needed advice on whether I'll need a shunt, or any other kind of surgery on my IIH. I was hospitalised back in April, and when the neurologist came round to see me whilst she was doing her rounds, she said "if it's no better by your appointment in June, we will be looking at referring you to Oxford". I have been on Diamox for 13 weeks, and have been on the strength of 2000mg after my LP opening pressure was 31. Then I got started on Topiramate when I was on hospital in April, and have been on 100mg of that for 8 weeks, and my headache seems to be getting worse... Not better! I had a lumbar puncture a week after my first one, and after they took the pressure down to 17, it had gone back up to 23.2 after being on those tablets too, so it just proves that the tablets aren't agreeing with me. 
I was just wondering, through all of your experiences, is it likely I will need a shunt, or any other surgery? 
Thank you in advanced  x

Hi Jade. 

I'm just saying hello for now.  I am sure others will be along soon to share their experiences - this isn't something I can personally answer, although I know a lot of people have similar stories.  In the meantime, do look through the forum.  I'm sure you will find some useful information, e.g. about the questions to ask at your next appointment.


Take care, Ann

Hello Jade, and welcome tot the forum.
As you read around the many posts on this site you will notice just how difficult it is to predict much of anything about this illness.  Each of us have things just a bit differently.  In response to your question about needing a shunt, there are other meds you may be able to try, also other types of surgery, including optic nerve fenestration. The best thing to do is research.  Be proactive.  Learn as much as you can about IIH.  Keep a log on your symptoms, the meds that you are taking, how you are feeling.  It can pinpoint possible triggers.

Hi Jade,
sorry that you are here, but its good that you can get lots of support and information.
Just so you can get some comparison: I am in Northampton and i was diagnosed with an opening pressure of 38. I am on currently on 1500g diamox and 100g topirimate and am now fairly stable. mostly i am fine but i can still spark off a high pressure headache with exertion or poor diet.

back when i was on 1g diamox and 100g topirmate and still getting bad headaches we did a lumber puncture and my pressure was 24. because this was under 25 my nuerologist considered this acceptable and i had to fight to get my diamox raised to 1.5g to get my pain under control. I have never been allowed to get my pressure down to 17 - i wish i had!!!! they certainly would not consider surgery at any of these levels.

you need to be over 25 to be diagnosed with IIH but my Neurologist considers 25-30 as just abnormal high and considers in most cases it should just be monitored and not treated with meds. and it is well into high 30s, failing to react to all meds or sight is a risk before they consider surgery. 

You do not mention how bad your tunnel vision is? but i had blurry vision, extreme light sensitivity and reduced visual fields so these are not the effects i am talking about when i saw sight is at risk before they consider surgery. This sounds a bit strict but surgery is a big deal and should not be a first result, but also i found my neuro to be too strict and ended up getting a second opinion as 24 as a pressure was far too high for me and certainly was not acceptable!!!
so this is my experience - dont know if it will be the same for you - there really is no industry standard. but best of luck to you, and if diamox and topirimate dont work for you there are other drugs yo can try before surgery. xx