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.