Another wake up call from the beast at 2am and 3am this morning followed by an hour of agonising pain and wishing it would just stop or finish me off. Some times the pain becomes so bad you pray for it to end and all you want to do is smash your head against the floor or wall to crack it open and release the beast so it stops attacking you. NO matter how many attacks i get i can never get used to them. The winter weather is here and every day it is grey , wet, damp and cold i get problems with the head and neck. NO matter what preparation i do i just can’t stop the beast from showing his face.
It’s crazy to think there is nothing they can do to stop this from happening and that someone should have to suffer so much in this day and age of technology and advancement in medicine. They have almost taken care of Aids and slowly finding cures for different cancers yet they can’t find a cure for CH and the cluster attacks people get. Every time the beast comes it makes me feel sick as a dog and the ringing in my ears just becomes so loud i can’t even hear the TV when watching it.
When i was first told it was an incurable illness and that i would have to take strong medication and oxygen for the rest of my life i thought they was exaggerating the issue and that it would ease over tie where in fact they were right and i have git slowly worst even though i don’t get as many attacks as i did before i am getting them so strong that i jus can’t cope. I managed to get down to one a week with the medication over this summer but then suddenly ended up having an allergic reaction to the pregabilin tablets and didn't know why it was happening. It took me ages to find out what was causing it all and now i have found it and changed back to sodium valproate i am starting to get attacks again.
I know the attacks coming back have nothing to do with the medication and is in fact a reaction to the change in weather that i normally have every year around winter as it gets colder. Especially on those frozen morning or if it snows then i am in for a rough time. I wear a hat and scarf to keep the cold away from my head and face but even that doesn’t stop all the attacks from happening so i am just grateful that i am currently only getting 2 or 3 attacks a day. Last year i was up to 8 or 10 a day and as you can imagine it is like living in hell. Lets hope it continues to improve and the beast doesn’t get control of me again. I think the medication is working and helping to suppress the attacks as i can feel something trying to stop the attack from building but sometimes its just so strong it over powers everything including the injections.
