Another day of pain on and off like a light switch. Oh my god how am i going to cope with this all the time. Every Day for the last 2 weeks with no break ! Normally i get a couple of days rest in between bouts of attacks. I am soooo Tired.
Anyway, the more time i spend on-line reading about CH and other CH sufferers, the more i realise i am not alone in all this ( in one way this is a comforting thought) but also makes me realise that there is NO CURE for the condition. I have read so much about different treatments and medication people have been trying but one thing is common of all the different cases and that is EVERYONE who suffers is DIFFERENT. There are no 2 people with exactly the same types of attacks or attack patterns. There are slight differences in everyone.
The level of pain always seems to be the same, seems to increase with each attack until it maxes out during the evening and through the night. And the type of pain is always the same , on one side of the face and behind the eye. This must be the position of one of the main nerves i think, and as we get the attacks it must swell up or something like that anyway.
Since the attacks started i haven't seen much physical signs of damage apart from a slight droop in the left hand side of my face and a slight reddening of the skin tone on that side of the face. As time has gone on i can now see swelling along the scar on the top of my head so i think that this swelling may be causing pressure on the nerve and causing me more attacks than is normal. I am only guessing and have to wait till mu hospital appointment but it wouldn't surprise me to find out that is what has been going on for the last couple of months causing my attacks to increase.
I have had 3 massive attacks this morning already and they have been to the extent that they are now scaring me. When the pain comes even my chest is getting tight as the panic starts to kick in, and then my breathing gets slow. I do try to keep as calm as i can, and the oxygen treatment the doctors of starting helps. It does help to have an oxygen bottle at home, makes me feel a bit safer i suppose.
The pain is like someone has taken a hot poker and not just poked you in the eye, but are pushing it slowly through your head. That is the only way i know of describing the pain. Each attack lasts anything up to and hour or and hour and half. After each attack has happened it takes a couple of hours to recover before other pains like the back pain and the pain in your legs when you walk, start to disappear but by the time you are starting to get comfortable there is another attack on the way.
How people live like this i don’t know – its really getting to me, its really getting me down!
