I've only recently registered on here and thought I would share my experience and introduce myself to everyone.
I'm 28 and live in the UK with my husband and 3 year old daughter Scarlett.My Story
I had no idea there was anything wrong with me and went along to my local supermarket opticians for a free eye test as these were on offer at the time. I had not had an eye test since high school and even then it was just the type where you cover each eye in turn and read from a chart on the wall.
The optician checked my vision and did all the routine checks then asked me if I had experienced any issues with my vision recently. I replied no and then she said she needed to check something with another optician. She returned and asked me where the nearest A&E department was and if I could get there easily. At this point I began to really panic and when I asked her what was going on she said I needed to go straight to A&E (she advised me not to go for dinner with my daughter and sister as I had planned) and go straight away.
I left the examination room and burst into tears at the information I had been given. I went straight to A&E as instructed and after a short wait was seen by a neurologist. He checked my eyes and advised that I had something called papilladema or swollen optic discs and this was a symptom of a condition called IIH. He explained that I would need to have an MRI scan done to eliminate any other cause of the swelling (i.e a tumour) and then a LP to check the pressure in the fluid around my brain.
I left the hospital in a complete and utter daze not knowing what to think and all I could do was cry!
I then received an appointment through for the MRI scan which was on my birthday! The results of this were fine so next was the LP. The actual procedure was fine apart from the fact that my neuro had trouble locating the correct spot to draw fluid from so tried several times. The following week was the worst week of my life though! I had a post LP headache and could not get out of bed for days! My opening pressure was 27.5 which my neuro told me was not overally high ad certainly wouldn't be treated with medication. He then said he wold refer me to an eye specialist regarding the swollen discs and I received an appointment from the ophthalmology department shortly afterwards.
At this appointment, my eyes were checked thoroughly and I was told I needed to start taking medication to reduce the swelling immediately and I was given Diamox 500mg a day. I then saw the ophthalmologist every 2 weeks until I was referred back to neurology.
This time I saw a different neurologist who said the swelling in my eye did not appear to be angry (although to be fair he had nothing to compare this to as I had not seen him before). He indicated that the swelling could have occurred some time ago and it just had not been picked up as I had not had an eye test in so long. He advised me to continue with the Diamox and to lose weight and he would see me again in 6 months which will be Jan/Feb 2013 time.
I have so far managed to lose approx 17 lbs since this visit in Aug but have found it really hard going. I started off at approximately 14st, 5lbs so still have a long way to go yet.
Now 8 months on from the initial diagnosis, I am still dazed by all of this and some days are better than others. I have some issues with my vision like cloudy eyes (my term for cloudy or foggy vision) and occasional headaches. I also have tinnitus in my right ear that drives me mad but I did not really begin to notice this until I began to take the Diamox medication so am unsure if this could be causing this or worsening this. I also have vertigo which again am unsure if this is related to IIH or not. I just want to be able to lead a normal life again without the constant worry of IIH.
It would be great to hear from anyone else suffering this condition and this forum has certainly made me feel better as I now know I'm not alone and others are going through this experience too.
I hope my story has made sense and please feel free to add me as a friend on here!