About me - the health bit

I was planning to get this post written sooner but after having Ollie put down, I did not feel much like writing. I've picked up a bit now so here goes ..

I'd been pretty healthy growing up apart from a problem with the tendons in my wrists which required surgery. At 18, I went to Great Ormond Street in London to train as a student nurse. I loved it but I did burn the candle at both ends! About a year into my training, I was tired all the time and was very achy and stiff. I had lots of different tests and these were all inconclusive. It got to the stage where I could not complete the required placements so I had to leave. I had a few months rest and felt better so went and got a job working in a care home in the Lake District. After about six months there, the same symptoms occurred and I ended up going back home. This time things did not get better and it got to the stage where I had to spend a lot of time resting and used a wheelchair when out. After a lot of tests I was diagnosed with Myalgic Encephalomyelitis and fibromyalgia.

I got bored being at home so decided to go up to Alsager to Uni. I lived in an adapted flat with three others with disabilities. I still had to use my wheelchair but I had a great time and managed to cope with student life quite well. Just before I was due to take my finals, I had an excruciating headache and that is where the problems really started.

I started to have severe headaches most days and they did not seem to go away. I thought it was just due to exams but even after I came home they continued. I began to have to spend more and more time in bed and on very strong painkillers. I moved into my own flat at about this time and needed quite a lot of help. I saw a neurologist who said it was migraine so over the next 5 years I tried various medications and was admitted to hospital numerous times but got worse and eventually became bed bound.

After a great deal of persuasion, the neurologist referred me to the National Hospital for Neurology and Neurosurgery in Queen Square, London. (Ironically this hospital is next to Great Ormond Street Hospital!) It was decided that I would need to be admitted to be weaned off all the morphine and other painkillers I was on and then they would try to find out what was wrong. In June 2006 I spent a month in the hospital. I'd had some really negative hospital experiences but this hospital was totally different and everyone was so lovely. I was diagnosed with chronic migraine and a rare form of headache called hemicrania continua. This link explains it better than I can but put simply it means you have a headache continuously on just one side of your head. http://en.wikipedia.org/wiki/Hemicrania_continua

Over the years since 2006, I've managed to improve from the ME side of things but the head side of things has not been too great. I've tried lots of medication but very few have worked and most have given me serious side affects. Since then I've also been diagnosed with another rare form of headache called SUNA which means that I get lots of short stabs of pain during the day. At the moment, I have an injection of steroid every 10 weeks into the back of my scalp to help the hemicrania called a GONB. It's not as bad as it sounds and it does help the pain. Every 12 weeks I go into hospital for 5 days to have an iv drug called DHE. It's not pleasant as it gives you bad cramps and you feel really sick but it does help my migraine. The DHE and the GONB do wear off a few weeks before they can be given again so for those few weeks I can't do a lot and spend a lot of time in bed. I do have high flow oxygen which helps a bit as well as injections.

I had hoping to have an occipital nerve stimulator. This is where electrodes are placed on the occipital nerve and tunnelled down to a battery in your stomach. You then have a control which can stimulate the nerves and block the pain signals. The neurosurgeon says I will be suitable, the only trouble will be getting the funding from my PCT so fingers crossed!

That's it for the health part - I hope my blog entries will be able to illustrate what it is like living with something like this because as my blog title says its not just a headache!