Since my last blog post life has been a bit like Groundhog Day. My headache just keeps getting worse so on 17th April I went back into hospital for overnight pressure monitoring. The bandage holding the monitor on was too loose so it kept falling off throughout the night, so it wasn’t very successful. The results seemed to indicate that there were no extreme pressures so I went home for Easter weekend to enjoy the lovely weather while it lasted. I went back into hospital on Easter Monday for blood tests, an MRI and a neurology and an ophthalmology consultation. I also saw the Paediatric Psychologist. The MRI showed that my ventricles were very small. That can happen with a shunt. It can over drain the ventricles. Maybe this is why I have a headache – no one can say for sure. The main thing is that the shunt does seem to be working so there’s no emergency operations required.

We have had a “second opinion” from a neurosurgeon who has reviewed all the pressure readings that have been taken over the last 6 months but he hasn’t found anything obvious that would explain the headache problems so he doesn’t think that another operation is the answer at the moment. That is good news really. He said he has seen cases before where children with shunts and hydrocephalus have developed chronic headaches but its not clear why that happens.

I left the hospital with a plan to take some tablets called Topiramate and I was put on the waiting list to see a psychologist who will help me cope with my current situation. At least there was a plan!

Unfortunately after I left hospital I started to feel very down. My headache was so bad that I just wanted to stay in my room and not speak to anyone and I was crying all the time. I just couldn’t cope. My mum had to be with me all the time to try to help me. It was very, very difficult. We are very lucky to have a family member who is qualified in a number of alternative therapies and my mum asked her for help. That has opened up some other options for me and is helping me. It’s proving to be a very tough journey and I am having to face the feelings and emotions that have built up over the last 7 years and everything that has happened to me. It’s a journey I never expected to have at 15 years of age but life is just like that sometimes for some people I suppose.

I still have my headache 24/7- there is no relief.  My world has become even smaller and has really come to a stop. I don’t want to see people. I don’t want to go out beyond my garden gate (although I am making some progress going for short walks near my house).  Life is about as tough as it has ever been and even though some mornings I just feel like staying in bed I get up and try to push through.

My headache makes me feel very isolated and lonely. I hate feeling this way but I cant do anything about it because I struggle with visitors and noise, even just conversations. I can’t face getting into the car so I can’t go anywhere.

The paediatric psychologist came to visit me yesterday and chatting to her was very emotional but it will hopefully be helpful. I couldn’t make a neurology appointment at the Children’s Hospital yesterday because of the way I am feeling but my mum went for me and they made a new treatment plan. I am moving off my current tablets and going to try another and there are some other options if that doesn’t work.

I try to remain hopeful and positive although my headache makes that quite a challenge.

I hope my next post will have better news – keep your fingers crossed for me :