Hi everyone, my name is colleen im 25 years old and only 2 months ago i was diagnosed with IIH and this is my story so far. i was a very fit and active person up until this year when i noticed my body was telling me something was wrong, in Febuary this year i was diagnosed with PCOS cysts on the ovaries and the doctor put me on the contraceptive pill dianette to help with all the symptoms. after 2 months i developed bad headaches every day and squiggly lines in my vision so i stopped taking the tablets. it was from this day things started to change and the visits to doctors and hospitals began. I went and had an MRI scan as my doctor was worried i may have a blood clot but the scan came back clear which was fantastic im ok. what wasnt ok was the fact my headaches had not eased and my vision has been getting worse every since. I went to the orthamologist and they saw my optic disks were swollen and this was causing the blurred vision. it was important to reduce the pressure. i had my 1st lumbar puncture in july it came back the pressure was very high and they confirmed IIH. i have been on Diamox since 250mg 3 times a day which is giving me side effects such as tingling in hands and feet, tieredness lack of appetite and ringing in my ears. the plus is that the headaches are not everyday but my vision is still not good and i am so sensitive to light. i got myself into such a state 2 weeks ago and felt i couldnt cope and that was when i had a second lumbar puncture which i am currently waiting for the results.
I am so glad to have found a site that i can share my experiance with others that will understand how i feel and i hope i can help other to. its been a tough time and i have been stuggling at work but want to carry on my life as normal as possible as it is so important that we stay positive. I would love to talk to anyone about there experiances and how to cope better with the symtoms. Thank you Colleen x

Hello Colleen and a very big to the group. Unfortunately you seem to have been down the same diagnosis route many of us have experienced, which is always very scary and frustrating. All your symptoms are the typical IIH ones, and in time you'll be able to recognise them and deal with them a lot easier.

I know the side effects from the Diamox are uncomfortable and bothersome, so if they get to the point where you can't tolerate them any more, have a word with your Neurologist. Hopefully your doctors will make sure that your symptoms become stable and will monitor your vision at regular intervals.

Light sensitivity(photo-phobia) is common with IIH, and here is a link that will explain it more to you Photophobia

At home you can control the sensitivity by having softer lightbulbs, and having a desk lamp that can be bent lower, over your computer, so it only lights up the area's you need to see, such as the keyboard, rather than it hitting your face. If you wear glasses, try getting them with UV filter on and possibly reaction lenses which go darker when the sun is bright. Also here is the link to our suggestion for solutions to coping with it IIH and Coping with photophobia

We are always here to support you and to answer any concerns that you may have, and to help you have a better life with IIH as much as we can.