Ok, this review may seem a little boring and dragged out but ive shortened it as much as possible.

After my mum was told for two and a half years that she could not have any children, I, Rachel, was born on July 10th in Huddersfield. I then lived with both parents in a two-bedroom house until July 1988 when my mum became pregnant again and we moved to a bigger house but still in the same area. My sister was born in February 1989.
I started school in 1990 and High school in 1997.

Turning thirteen, this is when I felt my life was coming to an end. I finished school in July 1999 for the six weeks holidays and from that day on I was constantly ill until the end of August. I started with severe headaches and then over time I began having dizzy spells, was extremely tired and had ringing noises in my ears. I went to the doctors a total of seven times in ten days and I was made to feel stupid. They told my mum she was a paranoid parent and that I was only suffering from migraines, which were normal at my age. I was given migraine tablets and as these didn't work I was then told I was suffering from stress and tension headaches. Again the treatment I was given for these didn't work.

After continuos nights of no sleep, dizziness, thumping headaches, ringing ears and vomiting I booked another doctors appointment. This time when I went, my left eye had squinted, this is when the doctor finally believed it was something more serious and referred me straight up to casualty. On arrival I was rushed straight for a MRI scan and a CT scan. I was told I either had a brain tumor or meningitis and they'd be able to tell me more once various tests had been done. Can you imagine how this felt? It was extremely worrying and alarming as we felt the doctors had not believed I had something wrong and now it could be too late to treat it.

After numerous scans, tests and x-rays I was told there was a build up of fluid in-between my brain and my skull. That afternoon, a Lumbar Puncture (LP) was performed on me. Local anaesthetic was given and then a nine-inch needle was placed down my spine and a pressure reading was taken. This was the most painful experience I have ever been through. The pressure reading was 470mm/H2O; the average reading should be between 60 - 110mm/H2O. 37 mls of fluid was drained from me. This was when I was diagnosed with Benign Intercranial Hypertension. Both doctors and nurses admitted to me that they knew nothing about the condition, as it is so rare, with only one in 100,000 people being diagnosed with it. I was told there no cause of this illness or any explanations to why it has happened or if I could ever get rid of it.

I stayed in hospital that night, to wake up the next morning with the exact same problems as I had previously had. My head was thumping; I was unable to lift my head off the pillow so I new moving around would be impossible. I was told these headaches were 'low pressure' headaches due to the amount of fluid been taken. After continually having the headaches again all day, I was told I would need another Lumbar puncture to check the pressure had not risen again. Later that afternoon I went through the whole procedure to be told the pressure had risen again to 320mm/H2O. My whole family was devastated, we was told it was normal for the procedure to be only done once and then 99% of people continue a normal life with no problems, but for me, it looked like this was going to be an ongoing problem.

After been discharged from hospital, I had to see my consultant every three weeks for a check up and as the symptoms got worse I'd be admitted for another lumbar puncture. Over the space of two years, I had seventeen lumbar punctures. The procedure was becoming more difficult every time I had it done as the scar tissue on my back was thickening so I had to be taken to theatre and have a general anaesthetic before they continued.

January 2004,my neurosurgeon told me I couldn't go on like this anymore as it was becoming dangerous to take me to theatre every few months for an LP. The options of having a shunt fitted were thrown at me. There are two types of shunts, an LP shunt and a VP shunt. The LP shunt is fitted near to your spine and then a small tube goes round to your bladder. This automatically drains the fluid from around the brain when it becomes to high and then its released into your bladder. A VP shunt is fitted next to the skull and down into the bladder where again the excess fluid can be released. This is the most common type of shunt as it has fewer risks but involves having half your hair shaved off so they can work around the skull.
I was totally baffled and felt like I had been thrown in at the deep end.

After a few days of deciding, I agreed I'd have the VP shunt fitted. More scans and x-rays took place for me to be told that the ventricles in my brain were too small for this type of shunt to be fitted so I need an LP shunt. This scared me more as I knew they were operating around my spine and there is a risk of you becoming paralysed but it was a risk I had to take.

January 2004 the surgery took place, at Leeds General Infirmary. It was a two-hour operation and I woke up feeling like a bus had hit me. I had 13 staples in my stomach and stitches all down my back. I was unable to get of bed or walk around for a few hours but the next day I was allowed home providing I rested and didn't move around too much and went to the doctors to have the padding around my staples changed every other day.

Everything was fine I began feeling myself again after a week, I then had the stitches removed and began back on with my normal daily life. Three days later, the headaches began again only a lot more severe. I rung Leeds hospital and was advised to go straight back in. more scans and x-rays were done and I was told my shunt was overdraining. (Releasing too much fluid therefore giving me severe low-pressure headaches.) Back to theatre I went to have a valve fitted, this meant the fluid would only be released through the valve when it became full. After another two nights in hospital, I was again discharged home with thirteen new staples in my stomach and told to have them removed after ten days.

Six days after leaving, my stomach became infected around the staples. I had to keep them in for another ten days in which time my skin had started to grow over the staples so having them removed was more pain! My neurosurgeon advised me to take a full year off work and not to do any studying (I.e. college), as I needed to recover properly as I was always to eager to get back on my feet and continue with normal life.

At this point I was in my second year at college, near my exams but obviously I had missed so much work I wouldn't be able to do them as well I could have. I finished off as much college work as possible (totally dropped out of psychology therefore had two less exams to do, but still did my Health and Social Care exams) and came out with 3 A - levels. (Two C's and an E) I would have liked to have achieved higher grades than that but I had to appreciate my health meant more to me than exams. I also had to quit my part time job as a sales assistant meaning I had less money until I could start claiming benefits for being on long term sick.

Just to give you more of an overview on BIH, the main symptoms are: -

Severe headaches, Visual problems, nausea, memory loss, extreme tiredness, depression, back pain, problems with balance. However a person suffering from BIH will almost always look like a normal person but it is a highly disabling illness. I currently receive DLA *Disability living allowance* for my illness however it was a long, hard process to receive this benefit as a lot of people can't see me as disabled as I look ok most of the time.

My mum and dad decided they were splitting up in August 2003, when I was 16. I lived with my dad and my sister with my mum. I still currently live with my dad but I am moving out in October with a friend, once I start Uni. Studying Youth and Community work. I am also currently learning to drive and hope to have my test in the next couple of months!

Sorry to ramble on n on but hopefully more of you will become aware of the illness I have as it is so rare!