start of a new year the beast returns with vengeance

Well January never seems to disappoint when it comes to cluster attacks. Same time every year, when the first morning frosts begin so does the attacks. It doesn’t matter that the amount of attacks in general has reduced and the last year has been the best so far when it comes to the clusters as every January and start of a new year the beast returns with vengeance. It doesn’t matter how many attacks you have you always feel that once the freezing morning appear so does the highest level of pain. The attacks seem so strong at this time of year. I am sure its got something to do with the body feeling pain more in cold weather. Even though I know they cannot get any stronger than they already are they always seem to be the worst attacks I get all year.

The worst thing about it is the extra pain I am getting this year from the damaged nerves in the left of my neck and down the left side of my back. Every morning when I wake up I have to go through agony just to get out of bed and dressed. By the time you manage to get into the living room and sat down you are covered in sweat from the pain. This is made worst when I starts to aggravate the neck and head and eventually sets off another cluster attack. All you can do is take a few pain killers and hope it doesn’t get any worst. I knew winter was going to be a challenge this year but I didn’t realise how bad the pain would be and at what level the pain would be constantly. When I told the doctors I would learn to live with and manage the pain rather than risk mobility by opting for the cervical nerve root block I didn’t realise it was going to go this bad so quickly. I thought I would have had at least a couple of years before the pain got so bad I could no longer move. Again I think its only become this painful due to the cold weather as I have noticed when I keep my flat hot all day with the heating the pain is a lot less.

I have been using heat treatment a lot during the winter months on the neck and the left side of the back. I have also found that by placing a hot cushion around the back of the neck whilst having a cluster attack helps to ease the level of pain. I don’t actually believe it does anything to the pain , it just helps you to focus on something other than the attack and that in turn helps to manage the pain level. When i first starting having cluster attacks, before I knew what they were, I used to hold my face close to an electric halogen lamp heater. I used to place my face close enough to heat the face up so the heat matched the level of the pain and then slowly moved my face further away so the heat slowly reduced and found that the pain would slowly reduce with it. I know this sounds crazy and I could easily have burnt my face but at the time I didn’t care due to the amount of pain and was shocked when it actually worked to ease the attack. Its not something I do now that I know what the attacks are and how to deal with them but makes a good point on how hot and cold can effect your attacks and how being cold can make your attack seem 100 times worst.

I am grateful that this winter has been a mild one despite the cold weather as I haven’t had anywhere near the amount of attacks I usually get. This is a good sign as it means this year should be a good one and I should hopefully find myself out of the flat a lot more. I have my fishing to get back into and have lots planned for this summer so I am praying my clusters will behave themselves and continue to reduce in number. I am also hoping that the nerve sin my back and neck will begin to ease when the warner weather comes as its really uncomfortable and annoying at the same time. Even sat doing nothing the back is constantly aching. Fingers crossed things will improve soon.

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!

Winter has arrived , God Help us!

Yes its happened! Waking up to the first frosts of the year with frozen windscreens on the cars and a lovely white shimmer to the grass and the feel of it crunching under foot when you walk. This is the sign of the cold weather approaching and a reminder that I have to be careful when going out in the cold. Making sure I wrap up warm and keep my head covered so not to trigger the cluster attacks is usually the first action I take this time of year but for some reason the clusters are staying low.  Don’t get me wrong I am very grateful not to be dealing with severe pain first thing when I wake up but it worries me that I could be due for a large attack.

Its really strange how the cold weather has been my main trigger for the clusters for years and every time cold wind blows into my left eye or I feel a freezing cold feeling on the top of my head it would trigger a cluster attack and I would then spend the day having to deal with the pain and the constant after attacks you get when they start. Having anything up to 8 attacks per day each lasting an hour used to take it out of me. Now days they have really decreased and I am seeing 1 or 2 attacks every 3 or 4 days which is great. It would be even better if they would stop all together but I cant see that happening any time soon unless a miracle happens.

Another strange fact about the clusters is when I am out fishing. For some reason when I go fishing, and this does include cold weather, the clusters don’t seem to develop. Whether it is something to do with being able to relax or something to do with the amount of concentration I go into when I am fishing I am just grateful I don’t seem to get as many attacks when on the bank. At first I thought it has something to do with me not thinking about my illness all the time and actually concentrating on fishing and this was why they don’t develop but I have tried doing this with other activities and I don’t get the same results. I thought by keeping myself busy and not actually thinking about the clusters was the key and the reason why they don’t develop when fishing but this is not correct. As to why fishing is one of the only activities I can do with out being in pain all the time is beyond my understanding, I am just grateful I can continue some kind of sport and especially a hobby that I love so much.

This year I am dealing with a new problem now I have been fully diagnosed and after spending the entire 2017 in and out of hospital all the time. As well as the cluster attacks I also have a damaged nerve in the left side of my neck which I have mentioned before in my blog, explaining the amount of pains I get down my back on the left side and in the neck. I first thought tis was referred pain from the cluster attacks and for years I just put up with it. Now they have found out what is wrong and explained that there isn’t anything that can be done apart from a cervical nerve root block that could make me loose the feeling and movement in the left side of my body, so at the end of the day its not an option I want to take and would rather put up with the pain knowing I can continue doing things and still remain mobile. OK I know its another issue I am going to have to learn to live with and I know its a lot of pain to deal with but I do get good days as well as bad and would rather deal with the pain than loose my mobility and independence.

Even though winter is now arriving on our doorstep and the pains continue I am happy to report that my health is beginning to improve. Understanding what is wrong with me and knowing the things I can do to help myself manage the condition is half the battle. For years I didn’t know what was going on but now I see some light at the end of the tunnel. I am just praying the body continues to improve and I am able to get out a lot more than usual. it’s not healthy being stuck indoors for days on end and one reason I love to go out fishing. I find being in the open air, fresh air helps with your health and your moods. Things are starting to look good for the future and I have a few projects that I would like to get started and I am hoping that this is the start of things to come, good times ahead!

They are back... and so the beast returns.

Well its official the clusters are back. The cold weather has moved in and I am starting to feel it on the top of my head in the early hours. Then wake up at 3 am with a feeling of pressure and as soon as I open my eyes the cluster attack begins. Pressure and sharp pain shoots from behind the left upper jaw, u through my left eye causing it to close and water like someone has just turned a tap on. The pain then shoots over the left side of my head along the scar I have from where my head was split open all those years ago. It then continues into the back of the head and down the neck.  This is a full cluster attack and the pain level is so high it makes you feel sick. A sharp stinging constant pain, no matter how hard you rub the area of the pain it doesn't ease. You kneel in agony praying to god for the pain to stop, hoping it will ease with every minuet that passes.

Its horrible when a condition is so bad you actually pray for death to come and put you out of your misery. This is what clusters do to you. It makes it worst now I have damaged nerves down the left side of my body,. Instead of the cluster pain stopping in your neck, mine actually spreads right down the left side of my back The Cluster seem to aggravate the nerves in the back as badly as the nerves aggravate the clusters. Once it starts there isn’t anything you can do about it as one thing becomes painful its starts of the other. All you can do is take your injection and pray to god it aborts the cluster attack. If not you have to ride the pain for over an hour and believe me when i say that takes all of your energy.

By the end of a full cluster attack I am drained to the point I feel like I am going to pass out. All you can do is sit or lay depending on the position you end up in after thrashing about in agony for over an hour. Every muscle in your body aches and the side of your face feels numb from the pain. This always gets worst when the winter comes and the cold weather starts. I don’t know why the cold is one of my triggers but it is and there isn't much I can do other than try and prepare for when it comes. I use beanie hats to stay warm on cold days. Keeping my head warm helps stop the clusters developing but if there is a strong wind and it blows in my left eye it can also trigger an attack so I have to be so careful when going out.

I have to be thankful that I don't get any where near the amount of attacks used to get and at least I have shown some progress when it comes to managing the condition but I have to be honest it never gets any easier. It hasn’t helped I haven’t really been getting out as much as I should and not even fishing at my local lake. This has been down to the lump in the left side of my back causing so much pain and the hospital deciding I can live with the pain rather than waste the money on a cosmetic operation as they put it.  Lets hope I can get out and do some fishing soon before I start to loose my mind. Even though the cold has arrived it has still been very mild considering the weather we have had. I am hoping it will remain a mild winter this year and the attacks shouldn’t become too bad,

Although the Beast returned, there is still kindness out there!

The beast has decided to return with vengeance after giving me a break over the summer. I almost reached the full week pain free mark but missed it by one day. Now considering it used to be rare for me to see even one day with out a cluster attack I am really happy with the progress but saddened by the fact the attacks have returned in such a violent way. Since 2am this morning it has been attack after attack with me reaching a record of 6 in the morning. Now being able to abort the odd one or 2 with injections is fine but when you have to ride out the pain of the other attacks it really takes it out of you. I didn’t think I was going to be able cope this morning and had some really strange things happen that I can only put down to the nerve damage on the left side of the body.

I don’t care what anyone says , when you are experiencing strange things like electric shocks numbness, deadness and even icy cold feeling in different parts of your body for no reason , and you still know its the nerve, you STILL panic like crazy. They are horrible feelings when they come and can make life a living hell. Dropping cups of coffee because I cant feel my hand close around the cup properly. Falling over whilst trying to dress yourself in the morning as the feeling in your entire left side of the body just vanishes for a few seconds, enough to make you loose your balance.  These are only a couple of the things happening and trust me when i say its an extremely scary experience.

I was reminded that there are still good people in the world and my faith in mankind has been restored when a friend that I met through fishing, the sport I love more than anything, decided he wanted to help get me back out on the bank fishing again and has offered to help me out and even come fishing with me. He didn’t want anything in return other than me to teach him a bit about carp fishing which is something I would do anyway. Its really nice to see there are others who actually think of others first and ask nothing in return for their kindness. I thought old school attitude was dying off but it looks like its still alive in a few people. Hopefully now it wont be long and I will be back gracing the fishing banks again catching a few monsters. I really wanted to target one for Christmas this year so fingers crossed I can get my act together in time.