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.