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.

Another early morning wake up call to remind me of my condition.

  I have started to wonder just how much damage to my body theses clusters have caused or there is from the thing that caused the clusters in the first place. The reason behind me wondering this is the amount of problems I have been having with the left side of my body and the nerves. It just seems as time passes and I learn to deal with one thing something else comes along and starts causing me problems. I have been getting a lot of chest pains again and I assume its the hernia and the nerve both playing up at the same time but even though I know what it is it doesn’t stop me worrying all the time.

  The clusters seem to have dropped right down ever since I started to manage the pain in my neck and back. It seems like the neck was one of the major factors in setting off my clusters and why they turned chronic. Sometimes I forget just how painful clusters really are and its not until I get an early morning wake up call from the beast then it reminds me just how horrible this condition is. Again this morning the best decided to pay me a visit after being attack free for almost a full week. Its crazy how they can just appear and start from no where. The level of pain that comes with the attack is something I just can’t describe and I will never be able to manage. It really surprises me how I have managed to go this long with the condition. Not that I have much choice mind you.

  The Hiatus Hernia has also been playing up more than ever before and causing me problems when I am eating or drinking by choking me all the time. Its really annoying as it can happy at any time and more than once. All you can do is rub your chest like crazy whilst swallowing over and over again until it suddenly pops through. One of the most horrible feelings you can imagine. It worry's me that one day I wont be able to get it to pop through and then I would end up chocking. Until that happens there is nothing I can do other than make sure I take my medication and just deal with things when they happen.

  The nerve damage on the left side of my body has been causing me a lot of pain also and when I walk I am in agony. I try not to show I am in pain when I walk as I have started to get a bit fed up with people seeing me in agony and out of concern asking what’s wrong. Its not that they are doing anything wrong, far from it, its nice to see people care, but you get so fed up with explaining the same thing over and over again. Its the same thing every time I go to the hospital. It’s not like they don’t have your entire medical history on a computer in front of them but because they don’t have time to read every ones records completely you find yourself having to explain things over and over.

  I haven't really managed to get out much the last month as the pain in the back has just been too much to deal with so I haven't even managed to go fishing. I need to get back out on the bank soon as I am having fishing withdrawals so I am going to have to arrange something before I loose my mind.  It’s weird as when I am fishing it’s the only time my illness doesn’t play up and doesn’t bother me. Maybe because your mind is focused on something other than your health and the fresh air helps to relax and regenerate the body and mind. What ever is the reason it works. Fingers crossed the cold weather doesn’t come in to quick this year and i manage to get out before Christmas.

Strange things Happening!

Its starting to become very clear that i am not going to fix or get rid of the nerve problem i have in the neck not to mention the problems i am getting down the left side of my back. I was hoping that once i started treating the damaged nerves and learn to manage the pain it would get better and i would be able to cope with the problems but in fact the opposite is happening. It seems like the more time passes the worst the problems are becoming. I have now woken 3 times where i have though i had a stroke in my sleep and the entire left side of my body is dead and numb. Not being able to move half of your body when you wake up is very scary and when it takes a good 20 minuets to return the feeling its worrying. 

This is not the worst thing that happens. The scariest thing of all is not when it goes dead but when the entire left side of my body including my head suddenly freezes. When i say freeze i mean frozen! Its as though someone has put the half of you inside a freezer and you feel like its icy cold and again numb. As the cold spreads slowly over the entire left side of the body you start to panic and start rubbing your limbs vigorously to try and warm then up and get feeling back but nothing seems to help you just have to wait until it returns on its own. Even though i know its only nerve damage that's causing it it doesn't really help to calm the situation.

I am grateful that the clusters seem to be staying low at the moment and despite the weather changing and the cold returning they seem to be staying at the rate i get through the summer which is great news so far. I am just praying as the freezing winter winds start that the head remains calm and behaves itself this. i know they will get a little worst as the winter chill begins but hopefully if i manage the pain like i am doing with the neck it shouldn't be too bad this year. One thing i have found is that by managing the neck and stretching the nerve when it feels stiff and using heat when its in pain it seems to have stopped triggering the clusters. I am now wondering if it was the damaged nerves in the neck that is responsible for turning my clusters from episodic to chronic. 

The lump in my back on the lower left of my spine moved and started touching the spine and causing me even more problems and pain than i already get. The last thing i need now is something else to join in the constant torture but it has and now it looks like i have to have it removed. It was supposed to be happening the other week but there seems to be a complication so i am now waiting on some scans to come back and for the specialist to decide if its operable or not. The last thing i need right now is a another problem that they can't do anything about so am am praying they can this time. It seems to flare up and some days are really bad where i can't walk properly and other days i don't get much problem from it. When they did the initial scan to see what it was they told me it was a fatty lump. Now they don't seem to be so sure what it is. All i know is i need to get it sorted soon as i have been missing my fishing and have been unable to go out until i know whats happening. Fingers crossed it will all be sorted soon. 

Reduced attacks but still everyday pain.

Once again I have been holding back on my blog hoping for a miracle I suppose. Since I was diagnosed with the damaged nerves in the neck and back and started to understand how it was effecting me and how it aggravates my clusters, I have noticed a huge decrease in the amount of cluster attacks I get. By learning to manage the neck and back and the pain that it brings I have found that it has stopped triggering my cluster attacks on a regular basis. The worst part of it is that instead of getting a few attacks per day with the odd day pain free, I am now finding that I am getting the attacks in bouts.

When they start I don't just have the odd one or two attacks now  I get a string of them in a row. Sometimes I can have 8 or 10 attacks all in one day and then it can stop for a week or so and then start again with another bout with again a high number of attacks through the day. I don’t know why they have changed like this and maybe its just the normal coarse the attacks take but for some reason it seems like they have become stronger than before and even worst pain (if that’s at all possible). I have also noticed that I am struggling to stay on my feet all day as when I do I find myself in a lot of pain up the left side of my back.

I know the pains in the back and down the leg and across the chest are from the damaged nerves in the neck so I tend not to worry so much when the pain comes but I can’t help becoming nervous and scared when the chest pains start and I get that sharp pain over the top of my heart. I know deep down its not my heart but it still scares the living daylights out of me each time it comes. I am using gels and pain relief but this doesn't seem to touch it and I can’t take the stronger pain killers so I have to ride the pain out each time it comes. Something else I noticed also was when I have a cluster attack and have to take my medication (injection) not only does the injection stop the cluster attack in its tracks if you take it quick enough but it can also help ease the nerve pain in the back. unfortunately I can’t take them for that reason and only being allowed 2 in any 24 hour period means its not a viable solution to all the pain.

Every time I make an appointment and tell the doctors about the pain and what's going on they always refer me to cardiology thinking it can be the heart and after loads of tests they tell me its not the heart its nerve and muscle pain, then they seem to forget that's what the issue is and I don't need the heart investigating I just want to know why I am getting the pain and why it wont go away and keeps scaring me. I feel it has something to do with the Hiatus Hermia but they never seem to investigate it further to see what's causing it they just say its not the heart , all is ok and send me on my way to continue to suffer with the pain and problems.

It’s great that I am now getting more days with out cluster attacks but I have lost the pain free days altogether. I no longer get pain free days due to the back and neck always causing some kind of pain and discomfort. I am sure it is the nerves in the neck that actually caused my clusters to turn chronic. I think I would have stayed having the odd couple of attacks every 4 to 6 months if it wasn’t for the nerves in the neck becoming ultra sensitive and being damaged by something. I think the nerve pain is what was aggravating my clusters and now I am managing the nerve pain it seems to be working and the attacks have really decreased but its still way too early to tell. Winter is just around the corner along with the cold winds and low pressure so I am waiting to see if winter becomes the nightmare it usually is with the clusters.

The early morning attacks return!

Once again the early morning wake up call from the beast has begun. i don;t think it can be from cold weather as we are in the middle of summer so i can only assume it has something to do with the low pressure and bad weather we have been having or again down the the nerve on the left side of my neck playing up and aggravating the cluster attacks. There has been many times when i actually think to myself have i been miss diagnosed? are the attacks being caused by something else? and can they find it and fix it? but every time i have a full on cluster attack it convinces me that the Neurologist was right and the description of a cluster attacks matches my attack perfectly , right down to the small details such as the body bursting into sudden sweats and the left eye closing and swelling from the amount of water pouring from the eye on the side of the attack. 

The way the attacks begin rare also a clue to what they are and what is causing them. With cluster attacks the pain always starts behind the eye and just above the eye and always spreads over the top of the head. Mine are always on the left side of the head in the same place every time. I actually get 2 different types of attacks. A mild one that i put down to being caused from the nerve damage i have as the pain begins in the back of the neck and spreads up into the head, this aggravates the clusters.  Then the normal attack will start at the front of the head behind the left eye. I have found that problems with the nerves in the left side of my neck have been causing at least 50% of the cluster attacks i have been getting. The second type is the normal cluster attack that always starts behind the eye and spreads up over the top of the head into the the back of your neck like a perfect line. This attacks always comes with sweats, eye swelling, face drooping and so much pain you wish you were dead. Now that i am learning to manage the pain an the nerves in the neck with heat treatment, stretching and pain killers, even though it doesn't stop all the pain and problems i have seen a massive decrease in the amount of cluster headaches that are triggered.

This reduction means i now find myself with cluster free weeks instead of days but unfortunately not pain free due to the nerve problems. The left side of my body is in constant pain from the nerve and my lower back is always annoying me, like having tooth ache in ya lower spine. its horrible, There's not really much can be done other than a cervical nerve root block with big risks so we can';t take that option yet until it becomes so unbearable i can no longer live with it. So for now all i can do is continue practising pain management and try not to aggravate the nerves and cause more pain by doing silly things to hurt my back such as lifting heavy weights and too much movement during a day, i find i now have to pace myself. I am a lot happier now i know what is causing all the problems and am slowly learning to adjust my lifestyle to accommodate and manage the pain but i still find i am not getting out nearly as much as i should or like.

I have managed to get out fishing at least once a month so far since the start of the season. No considering i was hoping to go each weekend its a long way from what i had planned but still a lot better than previous years, there has been time where i only managed 2 fishing trips in the whole year. Not having my own transport is one of the issues as when you have damage to a nerve and have back pain its impossible to carry all the fishing gear to the lake so you need transport. This is something i need to get sorted for next year. The fishing not only helps to keep me getting out and in the fresh air but it also helps to with exercise and especially if you suffer depression as it lifts the moods. I have been lucky as i have some good friends who have all been willing to help and get me out on the bank and are willing to help me get my gear to the lake but sometimes i feel like i am asking too much of people and just try and get on with things even if it leaves me suffering in agonising pain for an hour afterwards, my own stupid pride!

Each time i have a full cluster attack i feel like part of me is left damaged

One day i will be able to start the blog and say i have been pain free for a while, but every time i think i am starting to make some improvement with my health something comes along and throws a spanner in the works. The beast has decided to rear its ugly head after being quiet for 2 months and only having the bare minimum of attacks it has decided that this low pressure weather and rain was the excuse it needed to kick off and cause me some agonising pain. Once again at just gone 2.30 am this morning it started. I had opened my eyes and again i didn't feel asleep, or if i had been asleep it was like i was wide awake wondering why i was awake and then suddenly the pain started. The left eye began to water and close and the pain shot from behind my eye over the left side of the head along the usual path it takes into the back of my neck. Once again i was having a full CH attack.

It doesn't matter how many attacks you have you just never get used to them and they always seem more painful and stronger than the last one. I didn't know anything could feel more painful than the first attack i had but they can and they do seem to get worst. I am wondering at what level of pain will my body actually say no more.  I took my injection to help stop the attack but it still takes around 10 to 15 minuets before it has taken hold properly so you still have to suffer the high level of pain until it kicks in. The trouble with these injections is although they may work they can also cause you to have more attacks than normal. This i have learnt after using them for years, you get what they call  referred attacks, its as though you still have to have the attack all the injection does is postpone it until later, well that's how it feels anyway!

It's really not helping the trouble i am having with the left nerve in my neck and the amount of pain it causes down the left side of my body, especially in the back and left leg. Its making getting around very awkward and i feel like i am out of energy all the time. Within 5 minuets of starting walking i am in agony with my back and my energy just suddenly disappears and i have to rest for a while before continuing my journey. This has only started ever since i started getting pain in my lower back and left leg so i am wondering if its something again to do with the nerve. I have also noticed the small lump in my back has shifted and started to hit the spine in the lower middle of my back and i am wondering f its this that is causing things to play up at the moment. it looks like i have to book another trip to the doctors just to get it checked out again. 

You know one day i will write a blog that's not all about pain and suffering and wondering what next is wrong with me. I am starting to feel like i am turning into a Hypochondriac thinking they are ill all the time except its not me that's discovering problems its the doctors and my body is slowly giving up. Each time i have a full cluster attack and have to ride out the pain and suffering for almost an hour and sometimes longer than an hour, i feel like part of me is left damaged after the attack. Each attack makes more damage and that's what is slowly happening to me. If someone was to say " You are going to have a slow and painful death" this is the sort of thing i could imagine they meant. I am just hoping that as i learn to live with the nerve and nerve pain i will learn other ways to manage the pain and problems and maybe i will be able to get these attacks to stop all together but i know this isn't something that's going to happen over night. I just have to stay positive and pray for the best all the time.

Waiting for better news, will it ever get better! Talk about being fed up.

I was actually trying to leave my blog for a while and post an update when i was actually starting to feel better and my health had improved as i was starting to get fed up with all the doom and gloom, cant help you with this illness, can't help you with that illness, basically i was getting fed up with being told they know what the pain is and why its being caused but we can't treat it or cure it or even help you. OK, you might think i am being a bit dramatic thinking this was but believe me when you have been smashing your head against a wall for over 15 years and when you do finally find out what is causing you all the pain you are told there is nothing they can do or there is no treatment known for it, you start to become a bit bitter. Then when you are told normal thing like hiatus hernia can't be operated on due to its position and its not life or death so they wont invest in the kind of surgery needed, not that i want my chest cracked open, and told i now have a severe re-flux condition and once again nothing can be done about it and i have to learn to live with it, starts to get you a bit mad.

As if that wasn't bad enough i then start having severe problems such as loosing the feeling in my legs, my left side of my body, numbness and sharp pain all over the left side of my body and after loads of MRI , scans, x-rays and investigation they finally tell me that its the main nerves in my neck and guess what ! NOTHING CAN BE DONE! other than a treatment i could loose the feeling in my left side of my body or total feeling all over just from an injection into the nerve. The risks are so high that the only other option is again to learn to live with the pain and manage it with painkillers and medications until it gets to a point where i can no longer live with it and i have to have the treatment risks an all. Its just its really getting to me that each time i finally get a diagnosis and find out whats going on it turns out to be something that is quite serious and i can't do anything about. All of these problems are life changing illnesses on their own as you have to adjust your lifestyle to compensate for the problem. 

I have tried to do as much as i can in order to make my life a bit easier. I manage the cluster attacks despite being a chronic sufferer and getting them daily, through exercises, medication, oxygen and injections , oh! and a lot of git i manage to live with them and put up with the condition despite it not letting me work, go out and enjoy normal things, sports etc. 

I then adjusted my life for a second time to accommodate the hiatus hernia, changing the way i eat and what i eat and the way i do things around the flat and now again i have to change my entire lifestyle for the damaged nerves and the problems it is now causing me not to mention the pains. That's the main reason i wasn't writing so many updates on my blog, because i am fed up with being ill all the bloody time. Just once i would love to be able to say, I got up and went for a lovely long walk in the sun this morning instead of the same old routine day in day out.The closest i get to that now days is hanging out the bloody window first thing in morning or only when i actually manage to get out and do some fishing or walk around the shop in morning as its close. The pain becomes so bad when i walk after 5 or 10 mins on my feet i feel like someone has bettered me around the lower back with a bat or pole or something. The muscles in the back become so sore its crazy.

Well that's me done for another month with all the moaning and winging once again. The health has't improved in facts its slowly getting worst as i grow older so its inevitable its going to become a real problem one day soon but until then i will continue to struggle on and try and keep my chin up no matter how much it annoys me. This year i am going to try and get out and do as much fishing as i can. I started this month with a big session down at the local lake for 5 days so now the next month i will do a couple of 2 and 3 day sessions so i can spend as much time outdoors as possible as i feel so much better when out and about and in the fresh air. Lets hope i can come to terms with this damaged nerve and learn quickly how to control it or at least live with the problems it causes. 

Fingers crossed eh!

Attacks have come back but still better than before.

Well the beast came back with its early morning wake up calls after having a break from them for almost 2 weeks. That's now a record for me, actually going 14 days with no early morning attacks. It's a shame they couldn't stop altogether but that's wishful thinking.  I was still getting the attacks during the day but since i started the Ametrypline they reduced right down and now i know whats wrong with my back and left side and have started to learn to live with the problems the attacks are at an all time low for me which is amazing.

Despite my attacks being so low and learning to live with the pain from the damage nerve in the neck i am still feeling very run down and lethargic. I am not sure what is causing it and why its happening. I have been getting pains in my kidneys so i have been watching when i go to the toilet for signs of any infections or problems but all seems fine. When i try and walk to the shop my energy drains away so fast its crazy. It feels like i have just run a marathon when i have only been walking for 3 minuets.  It could be the nerve causing it as i was told i would get very wide spread and severe symptoms but it would just be the nerve playing up. Its so difficult to tell/

I have been waiting months for the new fishing season to start and finally it has so i am off out fishing. I have decided on a week of no stop fishing and relaxation so I am gong down my local lake and am going to camp out there for the 5 days and fish and relax no matter what the weather. Just to get out in the fresh air and leave all your troubles behind for the week will be heaven. Fishing is how i  now relax and relieve all my stresses and worries. After not being able to fish as much as i wanted to last year due to all the problems and hospital appointments i am really going to try and make up for it this year.

I sometimes wonder is it worth fighting ... all i can do is keep trying!

Well i finally have to admit that trying to live with 3 different conditions and all of them result in severe pain all day is really taking its toll on my body. When i was first diagnosed with the Cluster condition, and realised i would have these attacks every day until either they get it under control with medication or i couldn't take them any more, it rocked my world. Not being able to get treatment for the condition other than a few medications that will help to abort the attacks makes it very difficult to live with. Not only this but the medication used to try and control these attacks causes so many problems and side effects themselves it can become a real nightmare. There is no painkiller known that will ease or stop the pain so there isn't really much you can do until the body decides enough is enough. The one thing that has helped when it comes to fighting the condition is that i know each attack will eventually stop even if it does take an hour or two when at its worst.  At least the pain will stop and you can get some rest before it starts all over again.

When i developed the hiatus hernia, which again was caused through medication and side effects, i never thought there would be nothing they could do about it and that i would end up suffering chest pains and chronic re-flux condition not to mention when the throat blocks during my sleep waking me up in a panic. I thought to myself my luck can't be that bad surely and i now have another condition i have to adjust my life for. I can't sleep flat as the fear of choking in my sleep and the build up of acid during the night is just too much. Food and liquids trapping during the day whilst having lunch or dinner and chocking on your food is an unpleasant experience at the best of times but to have it daily is really annoying. Once again i thought to myself, just like the cluster headaches, the pain and problems isn't all the time so again i could learn to live with it and try and fight the problems,.

Then the third kick in the groin came along when they diagnosed me with a problem with the main nerves in the left side of my neck and once again they have told me there is nothing they can do to help me other than very risky injection into the main nerve or a cervical nerve root block witch could result in me loosing the feeling in the left side of my body not to mention the mobility. i could end up permanently stuck in a wheel chair if i choose these options in order to ease the pain. OK i understand these are only risks and everything could be fine but its a gamble and half,. Again my only other choice is to try and learn to live with the pain using strong painkillers, heat treatments , stretching and general surface massage on the neck area. It has been agreed that if i get to the point where i can no longer put up with the pain then i would be then given the first choice which is the injection into the nerve and hope that all goes according to plan. This is an option i want to hold off on for as long as possible and pray to god things get better soon. 

This time i don't get a break from the pain unless i am on painkillers and as i don't want to be taking too many all the time as that will cause problems in itself, then i have to put up with pain for a long period during each day and this can also set off some of my cluster attacks as it aggravates the nerve in the neck and causes a cluster to start. The pain down the left side of my body, down the back, across the lower back, down the left leg, down the left arm, across the left chest and the stabbing pain under the left shoulder blade are all symptoms from the nerve damage and is also causing me problems when i try and walk as all the strength disappears from my legs and i get pain in both legs from the ankle right up to the thigh.  As time goes on i am noticing more things beginning to cause me pain and i am noticing it is really taking it out of me.

 How much pain can the human body endure? My heart rate is now constantly fast and a couple of the specialists i have seen have shown concern yet nothing has been done about it. I am waking up some days where i get no feeling in my left arm and leg for the first hour i am awake and then the feeling comes back over time. Its a very strange feeling as you can still move the limbs but cant feel what they are doing. I am also getting some strange sensations where my left arm suddenly freezes icy cold from the shoulder to the wrist and then comes back to normal and the same on the top of my head like someone is putting a cold icy cap on my head. These are all symptoms from the nerve when they are playing up and although i understand what they are and that they wont hurt me or cause me to die its still scary when these things happen. How much of this i can take i just don't know but i will try and fight it all for as long as possible and try and get on with my fishing this year. Its difficult coping with the stress and depression side of the illness especially over the last few weeks as not only did i loose my best friend and neighbour but another very close friend passed away a few days ago from loosing a battle with cancer and its really taking its toll on me. I sometimes wonder is it worth fighting ... all i can do is keep trying!

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!

The Neck is worst than i thought, now what?

Well i finally got some answers as to why i am getting so much pain in my neck and down my back. This also includes problems walking and limbs going dead. I had my appointment with the spinal clinic and they explained the results of my MRI. They told me that there isnt actually any damage that they can repair or an illness that they can treat. What has happened is the nerves in the neck have become ultra sensitive due to the cluster attacks. He said its like turning up a volume control on a speaker once its turned up you can't turn it back down again. So now they have become ultra sensitive they will stay like that and there isn't much i can do about it. 

The symptoms i am getting are wide spread so not really a big issue at the moment. If it does get worst then as a very last resort i can have an operation but there are huge risks with this type of operation so at the moments its not an option. I will have to learn to manage all the pains and problems on a daily basis and will continue to get these problems and pains from now on. I can get it to ease off a bit by exercise , massage, heat treatment and pain killers but i will get the days when its very bad and nothing much i can do about it. If it becomes completely unbearable and constant then we can try an injection directly into the nerves in the neck but again this has very high risks he told me and again i should hold off until it becomes a situation where i have no other choice.

The pains in the lower back are caused from the muscles around the nerves becoming sore because the nerves are inflamed.  This is why i am getting lower back as well as pains in the upper area. He explained that the sharp pains down my left leg is again the nerve as the pain is travelling the full extent of the nerve when it plays up, this also explains the shooting pains down the arms and across the chest. As you can imagine i was quite shocked at the new and asked is there ANYTHING i can do to help myself or fix this problem. He told me there is no way of fixing it, and that i will no get this happening to me on and off for the rest of my life. Well I was speechless to say the least! 

I now have to go back to my doctor and explain the problem i now have and let her know to expect a letter from him and to make sure i have plenty of pain relief available to me and creams to rub into the neck. I can't take very strong pain killers as i have been down that road before and ended up with massive issues that i am now paying for so i am going to have to learn a way of dealing with this problem with nothing more than paracetamol, ibuprofen gel and with the help of massage and heat i should be able to ease it off when it gets bad. When it becomes unbearable i just don't know what i am going to do, its going to be hard. I am really hoping that with a little treatment it will start to get a little easier and pray to god that it never gets worst than it has been already.

I have to admit i am really starting to get fed up with problems that i cant do nothing about or there is no treatment. Why cant it be something that i can take medication for to become better or at least i can get treatment to make things easier for me. First Cluster Headaches , no cure, no treatment just experimentation with medication and a life of hell, then a hiatus hernia in a place where they wont operate on and now causes a chronic re flux condition that again i cant do anything about apart from learn to live with it and now this, problems with the nerves in my neck causing excruciating pain  with my neck and back and causes me major problems when walking. Once again there is sod all that can be done about it and nothing i can do. The final icing on the cake was when i got home and started to relax and come to terms with things, the doctor that i saw for the spine and nerves rang me on my mobile saying he just feels he needs to try and help me and we talked about the injection in the neck option but with the risks i will wait until it gets so bad i have no choice rather than going for it now. I am just praying to god things start to improve soon as i really don't know how much more of this i can take. 

Finally I have some answers!

For some reason I was dreading my appointment with Dr. Jones yesterday as I felt that once again I would be left with more questions than answers. I have been having so many side effects from medication and allergic reactions to some and intolerance to others its become confusing knowing what medication to take when and what to avoid. My meeting yesterday was to see if once again I was having an “intolerance” attack from a medication or if the Amertripterlyne was conflicting with another medication.  After the usual 20 minuet update on where I was at with my treatment we managed to find a conflict between to medications and think that it could be that that is causing me problems.

Another bit of good news was the doctor was able to review my results from the MRI scans on both my back and my neck. He confirmed my thoughts were correct. There is slight signs of arthritic problems in the lower back but nothing to be concerned about but when it comes to the neck its a different story. He said there is a problem with some of the discs, sponging of the disks and also swelling around the areas of damage. He mentioned about crumbling in between the disks and the problems it will cause with the left side of y back , neck and arm including walking. Everything now makes so much sense.

Its a bit annoying that what you thought it was right at the beginning turns out to be correct despite years of testing and re-testing. At least I can honestly say I have had a check up from top to tail in order to find the cause of the problems and its turning out to be the neck that caused it all including making my cluster attacks change from episodic to chronic. I now have to wait till next Wednesday to see the spinal and trauma clinic specialist and hope there is something they can do and some treatment I can have to help resolve this problem. The last thing I need is another problem I have to live with. I have this feeling that there isn’t really much they will be able to do apart from try and make me comfortable and that the damage to the neck will not be reversible and is just a matter of time before things get worst.

You can’t imagine how happy I am I now have an answer after all this time as to why these strange things keep happening to me, the false heart attacks, the loosing my legs when I walk and the pain that comes with it. The constant sharp shooting pains down the back from the neck and down the left arm. My left arm going dead all the time and strange feelings in my hands and feet.  The feeling like my head and left arm is slowly being frozen and the constant pain in both side of my neck. Finally we have a cause that we can now target to do something about. I know i am going to have to take things easy and not aggravate my neck any more than it needs to be and just be careful what I am doing in future but half the stress has now lifted from me just from having an answer.

There’s light at the end of the tunnel

Well finally we are starting to get somewhere! Appointments have been coming in and I am now set to see the specialist regarding my neck, the spinal clinic about the back and legs and the neurologist about trying to reduce the attacks even more and hopefully begin to get some clarity now results should start appearing. I am praying after all these tests and appointments , not to mention the amount of pain I have had to put up with over the last year, we will finally be able to find out exactly what is causing all the problems on the left side of my body and hopefully we can get the correct treatment to solve the problem or at least make me a bit more comfortable.

I am starting to get used to have condition that there is nothing they can do about and have to learn to live with every day. First it was the cluster headaches and severe pain they brought, then it was the cyst in the back and the lower back pain that brought, then it was the hiatus hernia that they can’t operate on so I have to learn to live with the chest pains and eating problems and then it was the severe reflux condition I now have because of the hernia and once again I was told nothing can be done as they cant operate so again I have to learn to live with it. Can you see the pattern forming?

I am just praying to god that what ever IS causing the problems with the neck, back and causing me pain when I walk will be treatable. The last thing I need right now is another condition that they cant do anything about. My luck hasn’t been very good when it comes to my health so this time I am hoping for a break. The attacks continue to bug me each day especially in the morning despite having 50% less attacks. It still takes it out of you and you feel low all the time, even days when you don’t have any attacks. The pain in the back constantly annoys me as I just can’t seem to get comfortable when sitting, laying and even standing still. Even when its not hurting bad there is always a dull ache which is more annoying than the sharp pain when it comes.

I am still getting the occasional stabbing pain in my back just under the left shoulder and still getting pains down the left arm. The back plays up more when its cold or damp outside so I am wondering if its something in the joints but we will know when the specialist gets to look at the MRI scans. I did manage to get out fishing last weekend for a day session but boy did I pay for it afterwards. My back was in bits when I got home and the next day was agony. I am going to have to take it easy on future fishing trips as there is no way I will let this stop me from getting out fishing. I am fed up with being shut indoors all day due to the constant pains and attacks so every time I can get out and go fishing is a blessing.

Still waiting for some answers as to whats going on!

I was hoping that the next time I wrote my blog update I would be able to give some answers as to what is going on with me and my health and why things had gone down hill but still I am in the dark and no one seems to know what is happening to me. I had my appointment at the hospital with cardiology and was given the all clear on the heart problem. They confirmed my suspicions that there is nothing wrong with my heart and the pain I was getting across the top of my chest and over the heart on the left side is all linked to the shoulder and neck. The cardiologist thinks the pain is linked to the nerve itself but cannot confirm this with out more tests. He insisted I have another CT scan on the chest and he will arrange this as an out patient but said he doesn't think I will be seen again by their department unless I do end up with a heart problem in the future, and with the amount if medication I am on he thinks it wont be long before I am back with them.


Not the news I was expecting but I am very happy its got nothing to do with the heart, I knew this all along but with out having the tests done I couldn't be sure. It seems like what ever is going on with the left side of my neck and down the left side of my back is causing me major problems. It doesn't help that I am still getting loads of pain from the Hiatus hernia I have , again on the left side, and to add the pains from the nerve across the chest makes you feel like you are actually having a heart attack. I even get the dead left arm and feeling like your shoulder is being crushed. I have been assured it is not the heart that's in distress but the nerve is sending the pain across the chest up to the neck. It does explain why I keep waking up with a dead arm and it takes ages for feeling to come back to the hand. This has happened a couple of times now and can be scary when you first wake up and realise you cant move the left side of your body.


The cluster attacks are back to normal for this time of year. I think that the damaged nerve in the neck and shoulder is now aggravating the cluster attacks and I think that could be the reason why they changed from episodic to chronic in such a short period of time. I am still getting the early morning wake up calls from the beast at 3am each morning. These wake up calls don't half take it out of you. First you have to deal with a full attack when you are half asleep and tired so it seems to drain your strength twice as fast as normal. Then you have the after effects of the attack where the side of your face and head becomes tender for the rest of the day and not to mention the lack of sleep all the time. I sometimes wonder just how much more of this I can take. I didn't realise that living with such a condition would be so hard.


Looking on the positive side of things can be hard when you are in pain all the time, every day. I have to admit I am pleased that we have actually got somewhere with the cluster attacks and I am now getting 50% less that I would normally. This means I am finding I am getting more days where I am attack free and I am able to gain back some sort of quality of life. When the attacks were at there worst I thought my life was over, I couldn't go out , I was always having attacks and being in pain. I really thought this condition would eventually kill me. Now the attacks are less and I am able to see some light at the end of the tunnel I feel a bit more positive about things even though attack free doesn't actually mean pain free due to the issues with my neck and back.


I am still finding myself locked away in doors all the time  as I don't really want to go out in the cold and aggravate my condition. I have to try and break this habit of being scared to go out in cold weather. It now the new fishing season so I am hoping that if I can concentrate on my fishing it will start to get me out in the fresh air a lot more and I can stop this living like a hermit all the time. Its not good for your health to shut yourself away but when you are in pain with every little movement its very difficult to do the most basic things like walk 2 minuets to the shop or even take the rubbish out the back. Thankfully I have a good friend who will be helping me this, year especially when I go fishing. He will be there to do the heavy lifting and take some of the stresses off me so I can get out and enjoy my fishing once again. Lets hope things ill continue to get better!

The Clusters continue and Winter is still Hell!

When i first started the medication i wondered if it would stop me having to deal with repeated attacks during the winter as this seems to be the worst time of year for cluster attacks. No matter how hard i try not to let it effect me and hide away from the cold, i still end up having to deal with constant attacks from the beast. The worst thing is they come in bouts of 3 or 4 and that can really drain all your strength. I am very grateful that i now have 50% less attacks than when it first turned chronic plus i am now getting more pain free days ( not including the neck and back pain). Despite the small improvements and the medication helping i am still finding the winter periods hell to deal with. I am sure its something to do with the low pressure when it rains or there is bad weather. This seems to be the time that the beast rears its ugly head.

The types of attacks i have never seem to change but always seem stronger than the one before , if that's at all possible. The attack always starts behind the eye and above the left side of the jaw and then shoots over the top of the left side of my head into my neck. My body immediately reacts with it bursting into severe sweats and and the left side of the face starts to droop and the eye begins to close whilst water streams out of the eyes socket. The level of pain becomes so severe you can no longer think of anything other than the pain. Its so hard trying to do things when you are having the attack. You get an out of world feeling when the pain hits its peak and its at that moment you begin praying to god for death to come and the pain to be no more. You feel like smashing your head on the ground to try and split it open to let out the evil that is trapped within.  You can't keep still due to the pain coursing over your head and all you can do is pray for it to stop.

Each time i have these attacks it feels like a part of me dies. No matter how many times you tell yourself the pain will eventually end you just have to hold on , you always think its never going to stop. How much more punishment can the body take and how much pain before your mind and body says no more. I have now been suffering "Chronically" for over 10 years and i really think my body is trying to tell me enough is enough. I am having problems from the hiatus hernia i now have which was brought on from side effects of medication and constipation. My back is in constant pain from the nerve or spine which i am now awaiting treatment for, my neck is in agony all the time from the constant battering the cluster attacks keep giving me. I am getting severe chest pains all the time and my left arm keeps going dead and numb from the nerve in the neck. I am now awaiting so much treatment at the hospital its starting to become a joke. 

When i said i would fight this condition with every ounce of strength i mean it, but i can only fight as hard as my body will let me; and if its starting to give up on me and i beginning to worry how much more i can take. All i can do for now is wait for these appointments with the Spinal clinic, Vascular Surgery and Cardiology and pray that it IS the nerve causing these problems and i will be able to do something about it. I have always felt that the back problems, neck problems, chest pains and dead arm are all down to a damage nerve that i have in the left side of my neck. I have now had several MRI scans done so they should be able to now confirm this theory or at least tell me exactly what is happening and why its causing me so many problems. I am also convinced it is this damage that caused my cluster headaches to get worst and become chronic.

As soon as i have been seen and finally get some answers i can stop worrying about it and start trying to make myself comfortable and concentrate on my fishing once again. I have missed out on quite a few fishing trips last year all down to pain in the neck and back so hopefully now i am getting some answers and help they will be able to start treatment and i can start getting out a lot more. I think not knowing what is wrong with you is a lot worst that actually being ill. The stress and the worry makes everything seem 10 times worst. I am just hoping my cluster attacks remain on its current course and continue improving and reducing over the next few years.

So once again i still don't have any answers!

Well, i suppose i better explain why i haven't been updating my personal blog as much as i used to. When i first started the blog i would update it each day no matter how many cluster attacks i was getting i would still try and get online and let readers know what was happening. After a few years of doing the same thing day in day out i decided the blog was becoming boring and it was the same thing all the time. How the attack started, what part of the head it effected and then the after shock of each attack and how my body was not coping with the pain. To me it seemed as though i was just repeating myself all the time.

At the start of December i decided to wait and try and find out exactly what was going on with my health as i have so many secondary problems that have all come about due to side effects of medication and also side effect of the cluster attacks. I had been booked in for several different scans and tests and appointments with my specialist so i though i would wait until all the results were in and i could then update everything with some definite answers as to what was happening to me. This was a good idea and some new things for my blog, or so i thought!

The cluster attacks i get seem to be aggravated by a problem that is slowly getting worst that is either the top of my spine or my neck. It is giving me so many problems and constant pain every day. The problems include left arm going dead, chest pains across left side of chest making you feel like a heart attack is happening, especially when it happens the same time as the dead left arm. I am also getting a sharp pain like a perfect line down the left side of my back and across the bottom of my back and spine. This gets worst as the weather becomes cold or wet and also causes pain to shoot up the back into the neck and can sometimes set of a cluster attack. There are even days when i try and walk to the shop, only 2 minuets from my flat, and i just can't make it with out having to sit down and take the weight off my legs. After about 30 seconds of walking its like all the strength suddenly disappears from both legs and walking starts to become painful as the legs begin to burn and feel like a pressure is crushing them. 

When i told the doctor they sent me for another scan this time to see if there was any clot blocking the circulation in my legs. Nothing has shown up and i still get the problem every now and again. They have now done an MRI on my neck and i have just been for an MRI on my spine  to try and find out what is causing all these problems. When i went to see the doctor for the results of the first MRI on my neck i asked her what was wrong. She called up the results and all i could see was loads of red writing in words and sentences that was beyond my understanding as it was all medical jargon. She then looked at me and said " I have to refer you to a specialist", prescribed me some ibuprofen gel to rub in for the pain along with the paracetamol (as i am no longer allowed stringer pain killers) and told me they will be in touch. So once again i still "DON'T HAVE AN ANSWER" as to whats causing all these problems.

When the specialist fist told me that there was no cure for cluster headaches and no known treatment and i would have to learn to live with the condition and experiment with medication to see what ones or combinations would help stop my cluster attacks, i though to myself; "well things can't get any worst can they?".. Well it proved me wrong! It has become worst. I am now suffering with Cluster Headaches (chronic) every day, Hiatus Hernia that can't be operated on that is now caused me to have a chronic re-flux condition, Damaged Nerve in the neck, Damaged Nerve in the back, A Fatty cyst on the left side of my lower spine which also causes agony, IBS caused from the medication along with severe constipation and i can't eat properly due to the hernia and the re-flux condition causing food and drink to trap in the wind pipe chocking me. 

Well its not really the start to the year that i wanted and my health doesn't seem to be improving or will improve any time soon so all i can do is again wait for results and hope that they hurry with these referrals as each day passes the pain and problems seem to get worst. It always is worst in the winter due to the cold and damp so i am not really surprised that i am suffering so much at the moment but its becoming frustrating and very annoying that it takes months for you to get any kind of help if its not a life threatening condition. Its crazy that in this day and age with the technology we have that someone would be left at home to suffer in pain so much. I just have to keep thinking that there are worst sufferers than me in the world and if they can continue on then so can I.

I promised myself years ago that i would fight this condition and try and not let it run my life but that's been almost impossible. You can't help but let it dictate when you go out or do anything due to the fear of attacks all the time. Then as soon as the other health problem came along it was like i was stuck in a rut and couldn't get out. Last year alone i ended up staying indoors most of the time and even when it came to my fishing i only ended up going out a couple of times through the year. I have promised myself no matter how painful things get i have to get out more this year and try and get some sort of normality back into my life. Sometimes it really hard to try and stay focused and feeling positive and i do wonder sometimes how much more punishment can my body take before it says enough is enough.  Lets hop i can get some sort of control over these problems before that even comes close to happening,

So as for my first post of 2017 its not the happy and bouncy one i was hoping to write with answers to the problems and i seem to still be spouting the same old stuff once again.  Pain , pain and more pain all the time. We'll i hope those who read this have had a great Christmas and a good start to the new year and fingers crossed this year will be better for all.