Once again another year passes and another year wiser

Once again another year passes and another year wiser and closer to understanding my condition and how it works. Cluster Headaches is really the wrong name for this condition and it is definitely the MOST painful condition known to human kind. As to what it actually is and what causes it no one knows yet and they are still investigating and experimenting trying to find out as much as they can but as its a rare illness there is not much funding and not many professionals who actually know it exists. I was shocked and surprised to see it mentioned on the TV on "This Morning" where they discussed and explained all about this horrid condition and also the fact that not much is known and there is no treatment other than experimental. Now that i have lived with the condition since 1999 when the first attack happened and then 2002 when the attacks turned chronic I have grown to understand a little about it and what triggers the attacks. 18 years of non stop pain, suffering and agony at a level you can only imagine has also given me a new respect for life. Every person who suffers cluster headaches reacts differently to the illness. They will also find they have different triggers that set off the attacks.

No one quite knows the nature of the beast or why the condition starts in the first place. It Could be something that is in your make up, basically inherited through your family genes. It could also be a side effect of certain types of trauma as i had my head split open badly in Cyprus many years ago and feel that is the main factor that contributed to my condition and set off the cluster attacks. I also know that the damage to the nerves in the left of my neck aggravates my condition and because of all the neck pain i have had to suffer 3 times the amount of attacks i would normally get. This last year has been a real test as i have been in and out of hospital so many times whilst they were investigating my neck, my back and my heart. One good point is i found out i have a strong heart despite always being in pain. The nerves in my neck are shot and nothing can be done other than learning to live with the pain and side effects of the nerves or have them blocked risking loosing feeling and movement in my left side. For now i have managed to learn to live with it ad not only has it been helping me to deal with the back pains but has helped reduce the amount of cluster attacks i get. Learning to use heat treatment, stretching and very gentle massage on the effected areas i have found a way to ease the beast and not have so many attacks.

Now i have learnt to manage and ease the pain I notice when the clusters are about to start with little twinges in certain areas on the face and forehead i can now predict an attack roughly 30-40 seconds before it starts. I know that's not much notice but when you suffer this condition and the attacks come on so quickly that 30 seconds is enough time to grab your injection pen and try and beat the attack from starting. With my attacks reducing in number and i am finding myself more days attack free, shame they weren't also pain free, I a finding when attacks do happen they seem to come in bouts of several attacks at a time. So i can sometimes end up having 6 or 7 attacks one after another all in one day and then no attacks for a whole week. They have reduced in number over the years as i remember when i was getting up to 8 attacks in a day, every day. How i managed to survive i don't know but i am thankful for the people around me who has supported me as i don't think i could have done it and also thankful for my fishing as with out that to focus on i honestly don't think i would be here today. As winter approaches each year the attacks begin to increase and usually by this time each year i am in agony and in a bad way but thank god its been a lot better this year, Although i have been getting attacks the last couple of weeks they have not been anywhere as bad as they usually are this time of year the only thing i have had to deal with is the neck pain and the amount of pain in my back all the time down the left side.

The trouble with being in pain all the time is you don't feel like getting up and going out anywhere so this year i found myself house bound and bored stupid. I found that i couldn't even get out and go fishing as much as i wanted as most of the time i was in agonising pain or in hospital having treatment or tests. I am so happy this is now over and i finally have all the diagnosis's telling me what is going on and now i can just get on with things. Its also great that i am learning to manage the pain so that next year i can really get back into my fishing and carry on where i left off at the start of this year, Because of the pain and the attacks i have really missed out this year so now things have calmed down i intend on making up for lost time. My new years resolution will be to be out fishing most of the time so i am out in the fresh air getting plenty of exercise  which can only help to improve my health. So lets hope the beast stays away for a while, the weather improves soon and the fish are hungry next year.

I saw a glimmer of light at the end of the tunnel

Its always around this time of year when I look back at all my blog entries and realise just how much of a fight dealing with this condition it has been. When I was first told about the condition and what it actually was I thought to myself my life was going to be over. How on earth would I be able to live a normal life having to deal with extremely painful attacks constantly all day every day. I never once thought it would get any better or that i would eventually get them under control. I have to admit it wasn't until i was into the second year of treatment that i saw a glimmer of light at the end of the tunnel. 

When i started taking the injections to abort the attacks i thought finally i have something that would be able to control the attacks and i could get on with life as normal. Boy how wrong i was! The injections turned out to be another problem all together. When you start taking the injections on a regular basis they start to give you side effects and can actually work against you. Because you become reliant on them for aborting the attacks it seems like the amount of attacks increases over time and your body starts to get used to the injections. Then i found they were giving me severe colic and trapped wind that was causing all types of pain around the body. 

It wasn't long before i realised what was happening and started to reduce the amount of injection i would rely on and this eased the side effects for a while. It was when i was diagnosed with the damaged nerves in the left side of my neck i started to manage the pain a little better with the use of small exercises on the neck and heat treatment to the neck and face when an attack is building. As i began to cope with the pain down my left side of the body i realised i was getting less and less cluster attacks as time went on and now i find i am having a lot more cluster free days than ever before. Unfortunately i cant say they are pain free days due to all the other issues i now have on the left side of my body due to all the damage the attacks and nerves have caused.

At least i can say things have improved over the last 3 years compared to the previous years. I have less attacks and more time where i feel i can live a normal life. I am thankful that i was still able to go fishing when i wanted as that has been the one thing that has helped me cope with everything going on. Its the one constant in my life that i can focus on when times are hard knowing i will eventually pull through. I am looking forwards to 2018 as i intend to get my fishing back on track now all the hospital appointments and investigations are over and will be getting out a lot more and hopefully some travelling around the country next year will do me the world of good.

I would like to take the opportunity to wish all readers , friends and family a very Merry Christmas and a Happy New Year and i wish you all pain free days ahead.

With Cold comes Pain! At least things are looking up..

When the cold weather started I immediately assumed it would be the cluster attacks that would cause the most problems but I was wrong. The main issue at the moment is the damaged nerve on the left side of my neck which effects the entire left side of my body. Not only do I get sharp shooting pains constantly on and off all day but also strange nerve pains and symptoms that even the doctor doesn’t have a clue what’s going on.

The entire left side of my body suddenly feeling like its been frozen and turns icy cold to the touch. Sharp needle like pains over the entire surface area of my skin on the left side of my body like I am being stabbed by thousands of needles over and over again. The left side of my body becoming completely numb where I cant even feel the tips of my fingers or my toes yet I can still move them. Its a horrible feeling that can last several minuets before the feeling begins to return.

The constant sharp pain up the left side of my back into my neck from the nerve feels like someone has cut my back open with a sharp knife but had forgotten to use anaesthetic. All these pains have magnified now the cold weather has started and instead of only happening now and again, seems to be constant and I can feel the effected areas even after the pain has eased away. I knew the cold weather was going to be a challenge this year but I wasn’t expecting this.

Once again there isn’t really anything that can be done about it, it’s another issue that I have to adjust my life and learn to live with as the only alternative was a cervical nerve root block that may or may not cause me serious problems. That’s not a gamble I want to take at my age and I am still young enough to fight this. I promised myself years ago that I would never give in to the pain when I was diagnosed with the cluster attacks. It was one reason I decided to concentrate on my fishing rather than blogging about my illness and the effects it has on me. I would do anything to try and keep myself busy rather than feeling sorry for myself and try and remember there are people out there who are worst off than me.

My mother, who is the strongest person I know, has to deal with Dialysis every day or 2 days, My friend has his voice box removed due to throat cancer and he never smoked a cigarette in his life but can no longer talk or taste, A friend of mine passed not long ago due to cancer taking her very quickly and my friend passed from having Liver disease, failing kidneys, heart problems and a number of other illnesses. I think about these people and the fact they never once complained about being ill. They just seem to get on with things and inspire me to be strong.

Once again another year has almost passed and we are approaching Christmas and I can honestly say I am feeling better than I was a few years back despite having these extra issues. My clusters have reduced in numbers so I no longer have to hide away. I am now able to get back on with my fishing and pick up where I left off and can’t wait to get out on a fishing trip as soon as possible. Things are slowly starting to look up and I have a feeling will continue to improve as long as I stay positive and continue to get out in the fresh air and get on with life rather than hiding way behind closed doors. Lets hope things stay on track and continue to look promising. That’s all we can do!