Again i have been woken in the early hours by agonising pain but not from the beast as usual, this time its from the lump in the back causing really strong sharp pain right up the left side of my back. It’s not coming from the spine or travelling up the spine it feels more like it is slightly to the side of the spine then swings out to go under my left shoulder blade and then continues into the neck. Not only does it cause my neck to hurt like hell but its also trying to set of my cluster attacks and aggravate my already painful condition.
I still haven’t heard from the doctor about when i am supposed to give blood for the tests or as to what they are going to do about the back. I have an appointment that is still 2 weeks away and that is the earliest i am able to get to see my doctor. It’s no good going to see one of the other doctors in the practice as they don’t really know of my case and what is going on with regards to the different drug experiments to try and tame the beast. All they can do it give pain killers and advise if it gets too much go to A & E, yet A & E won’t do anything either as i have been referred for a scan and they say its now an on going investigation and you have to wait your turn to be scanned.
I do understand that the NHS is very busy and they have waiting lists longer than anyone can really imagine but when your energy is draining away for no reason and they say your heart is fine you would think they would want to investigate as to find out why my energy disappears so quickly. The trouble is it is not a life and death situation so again you have to wait your turn before any investigation is started. Not only do you have to wait time to be seen you also have to wait for any treatment as if it isn’t an emergency they will put you on another list waiting for operations or procedures that will solve the problem. By the time they get around to looking for something it has become a lot worst and could end up causing a life or death situation.
I am just grateful as i am actually feeling a little better today although my energy is still disappearing at an alarming rate i seem to have a little more strength in my legs compared to the last few days. It became so bad at one point i actually thought i was going to die and kept waking up every hour with breathing problems and agonising pain up the back and in the chest. I know they have told me my heart function is fine so there is something else causing the chest pains and i think it is linked to the problem in the back. I actually believe i have to different things happening at the same time. The draining of my energy is down to an ulcer or tear in my gullet or tube that goes into the gullet as when i try and eat or drink i get instant indigestion and pain. After massaging the chest i feel a pop as the food or liquid finally passes through easing the horrible feeling.
The second thing is the pain in the back being caused by the lump. This is what i believe is causing the chest pains and because i have the draining of the energy from the other condition it can fool you thinking you have similar symptoms as an on coming heart attack as due to pain you also burst into a cold sweat and find breathing difficult, like a mild panic attack. I am praying i don’t become any worst over the next couple of weeks while i wait for the doctor as if i do i don’t think i would be able to make it to the surgery. It is possible that the new medication i had from the Neurologists may have set off the ulcer or tear and made it a lot worst as it seems to coincide with when i started the meds and it was because i became suddenly unwell that i had to stop yet another medication that was actually helping to calm the nerve and the beast.
Just being sat at the computer typing up my thoughts into my blog is causing me agonising pain up the back and soreness at the base of the spine. I thought having CH was painful enough, i can honestly say that any pain in the nerve or spine is just as strong as some of my attacks but the CH attack still beats the level of pain it can get to. I am hoping with some rest and relaxation over the weekend it may ease a little and stop causing me so much pain but i think its a bit of wishful thinking. I really just wish the doctors would pull their bloody fingers out and sort something out before it becomes unbearable and its close to that stage already.
