Cluster Headache

Hello my name is Andrew, I suffer with chronic cluster headaches which is a rare neurological condition. It is the most painful medical condition known to mankind, which can also affect children as well as adults. I can't even explain how much pain I go through on a daily basis. (please see a link to my Youtube page which shows me going through a cluster headache attack). I have to use high flow oxygen to help abort them, I also use a epie type pen injection of sumertriptan in emergencies. I've had this condition for nearly 20 years now. I have tried to raise awareness via radio and television I also took part in a medical trial (where my cluster attacks were being triggered then going into a MRI scanner - which was horrific) to hopefully find new evidence as to what courses this debilitating condition. I have also tried different trial treatments which have included hospital stays for several days at a time. I can't take part in any further trials currently, as I simply cannot afford to travel to hospital. I was in receipt of DLA for 7 years then when I was to change to PIP the lady who did the assessment who was also a nurse was very nasty. She would roll her eyes every time she said and when you get a 'headache' she was basically putting down my condition as if it was just a normal headache. The other name for cluster headache is suicide headache . Unsurprisingly she scored me zero on every section, we reported her to the nursing and midwifery council and they are now investigating her fitness to practice. However I have to wait around a year before I get an appeal court date.

We have been plunged into poverty, our debts are sky high and we dread picking up the phone and receiving the post. I wen't into hospital for several days last week and had to ask family and friends to lend me money so I could afford to travel to the hospital. So I've been resorted to begging... please if you could spare anything it would be a massive help to our family. Thank you for taking the time to read this and as we say in the cluster headaches groups - pain free wishes

Kind regards 

Andrew