Those who actually follow my blog would have realised by now that i no longer do daily updates and leave it to do a main monthly one. the reason behind this was it was becoming boring and repetitive saying the same things over and over again. yes i suffer cluster attacks and yes its more pain than the body can actually handle and its a condition i wouldn't wish on my worst enemy but when all you have to say is pain , pain and more pain again and again it does get a bit boring. I suppose that is why i couldn't find many blogs about CH sufferers and what they have to go through.
Its not a nice subject to discuss really when all you can talk about is the pain levels and all the medication trials and errors you go through trying to manage the condition. It got to a point with myself where i have had so many bad reactions to medication whilst experimenting with the neurologist to fins something that would manage my condition i have had top put my foot down and say NO MORE! It made me so ill i felt as though i was dying from being poisoned all the time. Its bad enough having to suffer the condition with out extra problems added from medication.
My condition has become to a stage where there isn't really anything more can be done until they see how bad it will become. The damaged nerves in my neck and back will eventually cause me mobility issues where i will have to get aid and the hernia alone causes daily living problems as it is. The clusters have become manageable at the moment but could change at anytime especially as winter comes in so i have to choose a medication that i can live with the side effects. The rest will have to wait until i can get off all the crap medication the doctors have had me on as i have demanded a clean sheet and a fresh start instead of filling me full of pills and medications.
12 different medicines per day is crazy and asking for trouble. No more. We have already stopped many different medicines and i am feeling loads better already. this is the trouble with the new doctor appointment system, every time you ring you see different doctors and they all do different things prescribing medicines to counteract side effects from other medicines that you have been given. this isn't good at all. Finally they have listened and i am now in control and it seems to be helping so far.
Now i have my general medication under control i have an appointment with the neurologists to now re-start the medication to help with the attacks and i will no be able to tell if the medication will help me or make me worst instead of everything causing immediate side effects and making me ill because its conflicting with other medications the doctors have put me on for no. At one point it was become ridiculous i couldn't even take an aspirin with out feeling sick and it was all down to Mebeverine that i had been on for over 10 years that was given to me for stomach and bowel problems. Thank god its over now and i can start to feel normal it took long enough to fins out what was causing it all.
Thankfully my attacks are at an all time low and i have been able to get out and about a lot more lately. Other than a fungal infection this last week or so that has really knocked me for six i have actually been feeling much better than i have in years. i have been taking advantage of this and getting out fishing and also going for long walks to get fresh air in the evenings just so i am out and about and not locked indoors all the time. The back pain has been a problem whilst walking but as long as i don't go too far and rest every now and again when the back starts to hurt its manageable. I know its going to get worst over time as the nerve gets worst but ill take what i can for now and worry about it later.
