Hi. My name is Stacey and I was finally diagnosed yesterday as having IIH. I was sent to hospital at the end of June after a routine eye appointment showed swelling behind my right eye. After some eye tests I was admitted that night and after 4 days in hospital, during which time I underwent a brain scan with ink injected into my veins and an LP (successful on the 20th attempt!!!!!!!!!!). I was discharged from hospital on 1st July an hour after the LP and sent home without being told any results at all!!! I have chased the hospital since for more information to be told that the doctors secretary was on holidays (for 5 weeks!!!!!). This week I booked an appointment with my own GP as I have still been having constant headaches. He told me that have IIH and that the hospital should have informed me of this! I am now on a waiting list (until Christmas) to see a neurologist. My GP does not want to prescribe any medication until he has spoken to the neurologist (who ...guess what...is on holidays!!!)
I am absolutely petrified as I have no idea what to expect and have only read horror stories on the internet!!
Sorry for the big long story but it's come as a bit of a shock as I had foolishly thought my earlier stay in hospital was a one off!!!

Hi Stacey and welcome, I can understand you being petrified, especially as you have been given a diagnosis and then been left hanging. I'm very surprised that after having a lumbar puncture, usually done by a neurologist, that you were sent home without medication or anything, nor were told that it was IIH.

What usually happens when a lumbar puncture has been done and a diagnosis made, is that you are then put on Diamox, and have eye tests and possibly an MRI scan. If you are having to wait to see a Neurologist I would say that is what he will do.

However, you've had your diagnosis and a scan, so therefore with this firm diagnosis you should have left hospital with information about what it was. It could be that they have decided to wait until you have this appointment before prescribing Diamox.

Is your doctor prescribing suitable pain medication for your headaches? He is able to do that at least, and he could always contact the Neurology department regarding any medication. Waiting till Christmas for an appointment is a long time if you are still having symptoms and aren't having them monitored.

What I suggest you do, is from now on keep a diary and record all your symptoms from the minute you get up till bedtime. The more information you have the better, for when you see the neurologist. You could also try contacting your hospitals PALS, they can mediate for you and speak to the necessary people, and may even be able to get your appointment brought forward, especially if you explain to them your worry of being diagnosed with IIH and that you have been told you won't see a neurologist till Christmas. They are very helpful and are there for cases such as this.

In the meantime, ask your GP if there is anyway he can get someone to see you at the hospital sooner, and also to make sure you are on adequate pain medication.

I know there are some horror stories on the net, but to be honest, there are a lot more success stories too, which unfortunately don't get posted. The best thing for you to do, is remember that for each person it can be a totally different experience, and that is why we focus on the positives of living with IIH, because we know it can be done. Message me any time you want, ask anything you like, and remember we are here for you and you wont be going through this alone.

Heidi

Hi Heidi,

Thank you for your reply. I am so relieved that there is somewhere to go to chat to other people going through the same thing. My family are very supportive but to be honest I have complained of headaches throughout my life that I am sure they think, 'Here we go again ...another headache!!) I'm sure they thought I was attention seeking!!

I have not been prescribed anything by my doctor but had blood tests yesterday so that he has a base blood result before I start on any medication.

Have to go now as I'm at work right now but thanks again for your support and I will be in touch with an update soon xxx

Stacey