Once again the beast returns with vengeance

Once again the beast returns with vengeance. Each attacks draining the body to the point of collapse and made 100 times worst because of the pain in the left neck and back. The attacks always seem to start in the same place just behind the left eye and above the left jaw. The pain then spreads very quickly over the top of the left side of my head into my neck. My body then bursts into cold sweats and the hissing or ringing in my ears becomes so loud i can't hear the TV properly let alone see it as my eye starts to stream and tears run down my left cheek.  You would think after having so many attacks i would be used to then by now. They always seem to be stronger than the last attack if that is at all possible. The length of the attack can depend on how strong it starts and if i am able to use my medication quick enough. 

On average each attack is around 10 to 30 minuets long stretching to just over an hour if i am unable to take more medication or have left it too late for it to work properly. I now have a bad habit of massaging my head vigorously when having an attack as the friction seems to help me manage the level of pain when it comes. The pain level is so high i just don't understand how the body can endure so much pain for so long and i always wonder if one day i will have one attack too many. Even though i know the attack will eventually stop i always feel that its never going to end and just want to be put out of my misery and for all the pain to stop. When the attack finally stops i thank god and have to spend at least an hour relaxing and taking things easy as all my strength disappears during the attack. 

Since the turn of the new year i have seen a big reduction i the total amount of attacks i have during the day and am now getting more pain free days than i was before so i am now starting to live a semi normal life making sure i don't do anything to aggravate the cluster attacks and watch i don't hurt my neck or set off the pain which also causes the cluster attacks to start. Its hard sometimes as i feel i cannot do the normal things we all take for granted like taking a stroll into town to do window shopping. The last time i went into town shopping was over 6 to 8 years ago. I tend to stay clear of crowded places as i don't want to have an attack in the middle of a crowd. The same thing applies when wanting to go out anywhere, to be honest, as i just don't like having attacks in front of people. 

It seems to scare them and they then keep trying to help you even though you tell them there is nothing they can do and just to let you manage the pain yourself they always seem like they need to help. I know its nice of people actually wanting to try and help you but even though you explain things they still seem to not quite understand you. I think this is because not much is known about the condition but it is slowly changing as they are now finding more and more people who actually have the condition after being miss diagnosed for many years. I am hoping as more and more is found out about the condition they will one day come up with a solution to these attacks and people will be able to get the treatment the desperately need. Until then all i can do is continue fighting on and not give in to the beast no matter how bad my health gets.

Sadness and Stress can effect the amount of attacks you get

Once again the best has returned with vengeance, I have been having some horrific cluster attacks that are so painful not only do i loose my balance and the left side of my face becomes numb but just lately i have been loosing the sound. Yes i know this sounds strange but when the attack starts to reach its peak when it comes to the pain level all of a sudden my hearing becomes muffled and i can hear a very loud hissing sound like static from an off tuned TV set.  With the problems i have been having with the nerves in the neck has also been aggravating my cluster attacks and causing me to deal with 3 or 4 attacks during the day more than usual. Its very hard having to ride these attacks out especially when you can't take any more injections as you have used up the 2 you are allowed early in the day.

I have found a new trigger just lately and that seems to be when you are very upset or you mood drops very low. I am not sure if its the stress side of it causing the attacks to start or whether its just the low mood in general but it does seem to effect me. The other day i had some news that shocked the life out of me and caused my whole world to turn upside down. other than my mother, brother and step father the one person that has always supported me through everything i have been going through was my neighbour and best friend Royston Llewellyn. No matter what time of day it is or how bad things got he was always there to comfort me and advise me and give me the strength i needed to fight this condition and the problems i have been going through.

Unfortunately  Roy was unwell himself and required a serious operation to make him comfortable but things didn't go to plan and whilst in hospital the worst thing that could happen , did! He passed away whilst undergoing dialysis and as you can imagine it has shocked his entire family and all his close friends. This man was one in a million, he would always think of others before himself and would never complain even when he was laying in bed in agony from gout he still managed to smile and joke around. If anyone had a problem or needed financial help he was always the first person to offer and help them out. He would never see anyone go with out and was always there to offer advice and support. He dd so much for so many people and never once asked anything in return other than you showed him respect. He is the one in a million that will always be in my thoughts. It was him who showed me that we do have the strength to fight these illnesses and conditions and to keep on fighting. Sadly it has now also shown me that the body can only take so much punishment and eventually the time will come where you can take no more.

Its been hard the last few days thinking of him all the time and wondering what he would be saying to me now. With each attack i have i think of him saying to me , "Don;t give in to it Martyn" , "You can fight it and beat it!" . These words echo through my mind everyday and no matter how sad i feel at the moment i know in my heart that he will be at ease and out of pain now. So the least i can do is show strength and keep on going for as long as i can. Keep on fighting the illness , trying to find the right treatment and never give in the the depression. I know deep down he will be watching over all his family and friends and we will never forget him. I am just grateful and honoured that he was my friend!

"Roy we will miss you my friend ", "God bless you and thanks for just being you"

The Beast came back with vengeance ....

All i can say is WOW! What an absolutely horrific group of attack i have had since last night and early hours this morning. I thought i knew how painful a cluster attack was as i have had enough of them but for some reason last night the attacks that came were something i have never experienced in all the years i have been suffering with the condition. The attacks started the usual way at the front of the head and behind the eye and once again is spread over the top of the left side of the head and into my neck. This time , because of the problem i am having with the nerves in my neck, it spread from the neck and down the entire left side of my body, my arm my leg and my back all lit up. I have never experienced this level of pain before.  It was o bad i lost my hearing and all i could here was like a static hissing sound like a TV was out of tune. the entire left side of my face felt like it was electrified and on edge with really sharp burning and freezing pain at the same time. 

The pain level just continued to get stronger and stronger and had gone past the point of praying to god to kill me and put me out of my misery. It had hit a point where i was feeling so sick fro the pain i couldn't stop retching. The sweat pouring off me had soaked all my clothes making me feel freezing cold as the body was burning hot. I couldn't see out of my left eye at all and my right eye vision was doubled. I couldn't talk properly , everything felt like it was slurring when i tried to say something  and my body wouldn't stop shaking as the nerves were in that much pain. I managed to stop the first attack with an injection after 20 minuets it eased off but withing another 30 minuets i was into attack 2 and it was twice as bad and twice as long as i couldn't take another injection so soon so had no choice but to ride out the attack.

This continued with another 2 attacks all in quick succession lasting from 9 pm last night until 4 am this morning. I honestly thought that this was it for me, i was about to have my final attacks that will finish me off and i would then have one to many, that the body couldn't cope with, and that would be the end of me. This is how bad these attacks were! They have really knocked me for six and my poor body is in agony. The entire left side of my body is now tender after the attacks and i am afraid there are more to come yet. What has set them off so badly i can only guess but i believe its the problem with the nerves in the left side of my neck. I really don't know what to do after being told there is nothing they can do to help me i just don't know how on earth i can cope with this happening all the time. Its bad enough suffering from the cluster attacks in the first place but to have the attacks amplified due to nerve problems is just one thing i really don't know how to cope with.

As if it wasn't bad enough being in pain but i also lost feeling in my left arm and could only just about manage to stand up on my legs they felt so weak all of a sudden. Its really strange the effects that the nerves have on your body when things go wrong and some of them can be very scary as well as extremely painful. I am hoping this is just a bad flare up and things will settle over the next couple of days as long as i take things easy. With fishing about to start getting busy i really don't need more problems with my health at the moment so hopefully a couple of days rest and i should be ready to get out at the weekend. Fingers crossed eh!