After waiting over a year for an appointment with the physiotherapist i finally managed to get seen only to find out there isn't really much they are able to do for me. The damaged nerve in the neck and the back is just way to damaged to do anything with. I can't have an operation to repair it and i cant get treatment to make it better so i just have to put up with the pain and trouble i am getting on a regular basis. They can help me manage it a bit better than i have been by using very small and easy exercises that will help ease the tension in the muscles around the damaged nerve. They have given me 4 small exercises that should do the trick and i have to do them every day.
I started the program with no trouble gradually building up over the first couple of days but than after a week of doing it i ran into trouble. All of a sudden my attacks started to become regular again and i had to put up with 4 huge attacks one after another. This is because i aggravated the nerve in the neck and the muscles either side causing it to set off my cluster attacks. I really tried to get to grips with the program but it just seems to cause me more pain and trouble than its worth. I am scheduled to see them again in a weeks time so i am hoping there is some other way we can help my condition and help me to manage all the pain and problems, that are slowly getting worst, with my neck and my back.
Every day i experience sharp shooting pains up the left side of my back just left of the spine. This pain shoots into the base of my neck on the left side effecting my shoulder. I have also been waking up with a complete dean left arm. Its not from cutting off the circulation in your sleep like i have actually done a few times and within seconds get the feeling of blood rush back into the arm and tingling from the hands up the arm. This is different, it actually stays dead for several minuets and when it does come back to life i don't get any tingling sensation i just have a dead arm feeling in the upper muscle of the left arm as though someone has punched me in the arm really hard. Why my arm keeps going dead is anyone's guess but i am assuming it has something to do with the nerves on the left side of my body and the problems i have been having with my neck and my back.
My neck is as painful as it has ever been and keeps flaring up and causing me a lot of discomfort. When its at its worst i can hard;ly turn my neck left or right with out getting very bad pains. Even when the pain is minimal i still cant look over either shoulder and place my chin into my chest as it just causes too much pain and agony. I can look up with out any problems or pain which i find strange but i can feel a line down the back of my head into my neck and then down the left side of the body that i can only assume is the nerve that is causing all the problems. The other morning i woke up in the early hours with yet another visit from the beast. The attack started around 3 am and i can only assume it was the cold and drop in temperature that set it off. The strange thing about this attack is the entire left side of the back of my head went ice cold. A really strange sensation that i have only had a couple of times and is very scary when it happens.
Although i am still having major health issues and my hiatus hernia is causing so many problems i can hardly eat or drink properly i am still having the lowest amount of attacks i have ever had. he total amount of attacks i get on a daily basis has halved and i now find myself with more attacks free days the ever before but they still aren't pain free days as i have to contend with the back and the neck playing up and also the hernia causing problems. My luck regarding my health has been really bad the last 10+ years and i am hoping and praying to god for it to change soon. I have managed to get out fishing a couple of times over the last few months but have had to deal with attacks whilst on the bank. I am hoping to get a=out a bit more in the future as i feel i need to start getting out of the flat and in the fresh air a bit more before it starts to drive me completely insane. The doctors have started me on a testosterone replacement program as my levels suddenly dropped to a very low level at the start of the year and i have also reduced the amount of simvastatin i take for cholesterol which is a good sign as it means i am starting to get it under control.
I have only been on the testosterone replacement for a couple of days and already i am feeling a bit more positive in myself and am grateful that the medication and treatment has all started and slowly but surely i am learning to live with this condition. If someone was to tell me 10 years ago that i would be living with a rare condition that there is no cure for and very little treatment and that i would have to be in severe pain every day for the rest of my life i don't think i would have been able to continue and wouldn't have believed them. Now that i am under treatment and am learning how to deal with the constant attacks and pain its starting to become second nature. I really don't think i will ever get used to the level of pain the cluster attacks cause and i will always be scared of being out in the cold in case it sets off attacks but at least i am starting to learn how to live as normal a life as i can considering the amout of health issues i have. I just really hope it gets better and not worst again!
