Hello. Im Emily and I'm 16. I'm from Manchester England, I am about to start Eccles college.

I was diagnosed with IIH in 2010 although i had been suffering with headaches and blurry eye vision before. At first the doctors thought it was just migraines but i then saw a doctor at manchester childrens hospital who said it was IIH. I get migraines which are made worse when im near alot of background noise or bright lights. I often feel sick and dizzy too. As well as this I hear a druming or pulsing sound in my ears. I find that when I go to shops such as supermarkets with bright lights or the 3D cinema my head gets alot worse.

So far I have been the hospital 3 times for lumber punchers but overall Ive had 9 with 6 failed attempts. Im currently on acetazolamide 250g 4 times a day and fudosemide 40g twice a day. Also I've been on period of steriods after my last lumber puncher in April 2011. I do find it hard to spend alot of time in a row in busy loud areas, reading or on the computer as it sets off a migraine and makes me feel sick. Because of my IIH I have missed alot of my schooling the past year which has sadly effected my GCSEs. Personally, I find ice, cold drinks and even icelollies make me feel better when I have a headache. But sometimes its just easier to try and sleep off a migraine. Also just by simply sitting in a dark silent room I feel instantly better. The weather seems to effect how I'm feeling. For example, the hot weather or extremely dull weather makes my symptoms worse.

I didnt realise that this was such a longlasting illness and I'm worried for the future if it will still effect my school work and daily life. Also my nanie on my dads side suffered from migraines and we are unsure whether she had IIH also therefore I wonder if there is any chance this could be genetic.

I would also like to say how happy and relieved I am to descover this website as its so nice to know that I'm not on my own as a sufferer of IIH so I'd like to thank the founder of this website. Also if there is any other teen suffers could they contact me on either twitter millypeg95 or emilypitt95@hotmail.co.uk as it would be so nice to talk to someone my age going through IIH.

Anyone else can feel free to contact me with any questions.

Thanks Again. x

Hi Emily,
Wow! Have you been through the ringer. You poor thing to have to go through this at such a young age. I hope your docs are able to come up with something to help control your headaches and get your pressure right. Have they discussed shunts with you? I wonder if that may help?
I don't understand why they don't use a fluoscope machine in England (like a CT Scan) when you need an lp done. It allows the docs to see right where the needle is and so there are no failures. I sure am glad my Doc uses it!
Hope you get to meet others your age too!. I know how important that is.

They mentioned an operation or something but we are waiting till my next visit to discuss it. Aww I wished they used that machine so there was no failures. But I hope I wont have to have another lumber puncha even though I probably will. The good news is that my migraines aren't as bad as they used to be so I'm missing mess school and stuff.

Love emily x

Hi Emily and a very warm to the group. I am so sorry you're going through this, especially at a time when you are wanting to be out and about with your friends, and just having a normal teenage life. However, don't let it dishearten you and let it put you off fulfilling your dreams.

My daughter had glandular fever at 14 for 2 years, and she too missed a lot of school, so her exams weren't as good as she hoped. although she no longer has glandular fever, she still suffers because of it, but she did go to college after she left school, for 5 years, retaking her GCSE's and she also went on to get 2 A levels.

The reason I'm telling you this is to give you hope and encouragement that you can overcome this and go on to do the things you want to do. I know her illness isn't the same as IIH, but it was as debilitating, and she still has flare ups, but she never lost her determination that it would get in her way, and I know you can be just as determined. We will support you all the way, and always be here for you.

What we have to do now is to help you to adapt to living with IIH, and find ways to make your life easier and things more do-able. It's going to be trial and error to start with, but I'm confident that we can all help you to find a better way to cope and manage everything.

Hopefully we'll find people your age for you to talk to. In the meantime we're here for you. You can pm me or email me at ihaveiih@yahoo.co.uk for anything.

Heidi