Nothing they can do! I have to live in agony for the rest of my life.....

Once again the beast returns and the attacks start in the early hours of the morning constantly waking me up and making me have to deal with pain levels that are just beyond your imagination. Praying to god each time for it to end and when they are at their worst you wish for death to come swiftly so you don't have to suffer any more. These are feelings I have to deal with on a daily basis being a chronic cluster headache sufferer and find that every day I have to deal with different pains and side effects from medication always hopeful that one day it will get better or my attacks will eventually stop.

I had my appointment with the specialists at the hospital in the neurology department to discuss what was happening and how i was getting on with my treatment and medication. The amirtriptyline i am now on seems to have reduced the amount of attacks i get and i am finding i have more days with out any attacks but still have to deal with the beast ion a daily basis. The specialists are happy they have now found a medication that has worked for me even if i am still a chronic sufferer and i am pleased that i don't have to go through any more experiments with different medication causing side effects and allergic reactions. All though it was good news in one respect they have now told me there is nothing more they can do for me. I now have to learn to live with the condition using injections, oxygen and medication to control the attacks and have to deal with the pain the best i can. Being told there was no cure i could understand and accept and knowing there wasn't much known about the condition was also easy to understand but when they say they can't help you anymore and you have to live the rest of your life in agonising pain is a huge shock to the system. They said i will still be able to go into hospital if things become unbearable and i will be able to get treatment if the attacks become constant again but they have said if the medication stops working and i cant get them under control again all they can do is refer me to London and hope for the best. 

They told me that there isn't many "chronic" sufferers that last as long as i have. Many have become episodic again and get bouts of attacks and the others have committed suicide and that's why this condition is known as "suicide headaches". Its not a very nice feeling knowing that people who suffered as many attacks as me just gave up in the end and didn't want to fight the condition any more. Its a sad fact that this condition has such an effect on peoples lives as it has on mine. Ever since i became chronic my life has just been destroyed. Yes i do get to go fishing every now and again and i still sit and enjoy watching TV at home but i still feel like i am house bound, afraid to go out in case of a major attack. I try and put a brave face on when ever i am out and about but in reality i am scared of what could happen to me if i have one attack to many. When i am fishing people don't see when i am stuck inside my bivvi hiding as i ride the agonising pain out, trying not to scream in agony and bring attention to myself. The pain below the surface and the mental stress the condition places upon someone is really bad and sometimes i wonder how i have managed to fight as long as i have. I wish that one day i would turn back to an episodic sufferer but it doesn't look promising as the attacks just keep on coming.

Then i have to deal with the other health issues that have all come about from the medication i have to take regular. A hiatus Hernia causing me chest pains that take my breath away and constantly feeling as though i am having a heart attack. Not to mention the amount of times they have rushed me into hospital thinking exactly the same thing. The pain i get down the left side of my back from the damaged nerve in the neck. Waking up in the morning with a dead left arm and leg and thinking i have had a stroke as i wait 10 to 20 minuets for them to come back to life. The constipation and IBS caused by the large amount of medication i have to take daily and the stomach pains that go with it. Constantly waiting for appointments to be arranged and for treatment to begin, watching the post each day praying a letter from the hospital will arrive so i can fix some of the problems i have but nothing comes for months, and sometimes years. It's crazy to think that 20 years ago i was living a normal life and enjoying what the future had in store for me looking forwards to things about to happen. Now i wake up each morning feeling sad that i have woken and dread what the day will bring. The only spark left in my life is my fishing and even that has become limited to when i can get out and go enjoy the only thing left that i can do with out problems.

I still cant accept the fact that there is nothing that can be done about my condition and that i will have to suffer for the rest of my life with no hope of ever getting better. All i can do is pray the medication will continue to work but whilst i have other problems like the hernia its not looking good as because i have to take tablets for the hernia to allow me to eat and drink i have had to stop the medication that reduces my attacks. The attacks have already started to slowly increase in number again and will continue as time goes on whilst i am waiting for them to arrange an appointment for me to get the hernia sorted. It's crazy how they can leave someone suffer so much pain with no end to it in sight. I say to myself every morning that i will fight this with every breath i have in me and every bit of strength i have left but i wonder just how much longer i can go on. Ch - Cluster Headaches , otherwise known as Hortons Neuralgia is one of the worst illnesses i have ever come across. its up amongst cancer and aids and is one illness that completely strips you of any quality of life. My heart goes out to all the others out there who are suffering like me and to all the other seriously ill people with conditions that have totally changed their lives. Until now i hadn't realised how bad being seriously ill was and hadn't appreciated just how strong these people are who fight on and try and get on with their lives.

Once again the Beast returns !

When ever i feel like i am making some progress and finally getting my condition under control something always happens and makes me feel worst than when i started. My luck regarding my health has been so bad over the last few years i am shocked that i am still alive and breathing. I have had several scares due to severe chest pains that the hospital thought i was having major heart problems, i have had allergic reactions not only to the medication the doctors are giving me but to thing that i have never had reactions to before all because of the hiatus hernia. My mobility has gone down hill fast with bad pains across the bottom of my back from a lump i have on the left side of the spine and then there is the sharp shooting pains up the left side of my back and in my neck all on the left side. This is probably due to a damaged nerve i have in the neck and it seems to be getting worst as time passes. All this on top of my actual CH and the attacks i get on a daily basis.

As appointments were dropping through the door and action was being taken i thought i was finally getting somewhere and started to feel a lot better not only physically but also mentally as i felt i was actually gaining some control over my condition. Then when things had started looking up the inevitable happened and once again something came along and started to make me ill again. This time i have been waking up early in the morning with my usual attacks but now i have found that i am waking up with a completely dead left arm and sometimes also my left leg. At first i thought it was just from sleep as after a few moments it starts to come back to life with the usual pins and needles. It didn't start worrying me until it began to start happening during the day when i was just sat watching TV. All of a sudden i would go to move and realise my left arm wasn't reacting to my thoughts or movements and i couldn't feel a thing. When i did move all it would do was flop around.

This has been going on for a while now and it keeps happening. I now have pain in the upper arms muscle as i think i have pulled or damaged the muscle from where it was flapping about and in panic i must have moved it a bit too much and hurt it. The feeling always comes back after a couple of minuets and i always get that pins and needles feeling as though the blood circulation has been cut off and then suddenly releases and the blood rushes back into the arm. I am sure i am trapping whether a nerve or the vein but i have this horrible feeling it is again linked to the damaged nerve in the neck that has been causing me sop much pain for such a long time. I have now been waiting well over a year and half to be seen about it and am no where closer to getting it sorted since it first started all that time ago. I just hope they will sort out an appointment soon as it really is starting to get to me. With all these things happening my stress levels are very high and i can tell this by the skin peeling on my arms and in my hair as i seem to get a stress rash when ever it is playing up or i am worrying too much.

Stress is also one of the main triggers for my CH along with cold weather so i have been having to deal with a lot more attacks just lately and this just drains all my energy leaving me feeling lethargic and sore all day long. The hernia is also causing havoc with the body as i keep getting repeating infections and problems when i eat and drink resulting in sharp stinging pain in the chest area. This along with the dead arm and back pain all the time is really taking its toll on me and i wonder sometimes how much more of this can i take. I try and stay strong and keep saying to myself i can fight this all the way and i will try and lead a normal life. I managed to get out fishing the other weekend and i felt so much better afterwards so we are trying again this coming weekend so i can get some fresh air doing something i love. I am hoping the beast will leave me alone for the weekend and i manage to catch some nice specimen fish. I( have appointments coming up in just over a weeks time with my neurologist and also for a CT scan and hopefully i will be able to get them to put the wheels in motion so to speak and get me some help as things just seem to be getting worst.

The beast always returns at the worst times

I have started to realise that no matter how good you think things are becoming and how well you feel with the condition CH the beast always returns at the worst times and reminds you just how painful a condition it is. I have been going through a hard time just lately suffering from rashes that have appeared suddenly from nowhere and making my skin feel sore. Eyes that are just so sore its difficult to keep them open and really annoying as it keeps making my eyes water and a sore mouth that is from oral thrush being set off by the hiatus hernia i have. It seems that instead of just suffering from one thing at a time i am now having to deal with 2 or 3 different problems at any one time making treatment very difficult. The doctors have been doing all sorts of tests to try and find out what is going on and they are no closer to the cause of the problem so are unable to treat me properly. 

I have lost count the amount of emergency appointments i have had with my doctor and now feel embarrassed every time i have to call them and say i need to see the doctor yet again. It makes me feel like i am turning into a hypochondriac and have even started to question my mental health. I know i suffer with type 2 bi-polar and have done since i was very young but have learnt to live with it and keep it under control but still have problems dealing with the depression side of the illness. I also find i have trouble dealing with stressful situations and end up feeling ill afterwards so i tend not to put myself in that situation any more or try to avoid it at least. The stress i have been getting due to my health has been uncontrollable as not knowing what is going on is really starting to effect me and i am now starting to feel the effects take a physical form. If i knew what was making me ill i wouldn't worry so much as i know i can then treat it to make me feel better.

Again i have started waking in the early hours with attacks from the beats. I am sure they are being brought on by the amount of stress i have been going through as stress is one of the main triggers along with cold. If my head becomes cold or a chilly breeze across the face this will then trigger a cluster attack and cause me agonising pain. I was started on amitriptyline a while ago and saw a huge decrease in the amount of attacks i was getting on a daily basis but this started to conflict with the methadone and started to cause me withdrawal symptoms so we had to reduce the dose. Thankfully the attacks didn't return and stayed at a low rate for quite some time but i had to stop the tablets all together as i was having problems with the hernia and had to take domperidone tablets to help food and drink to stop trapping. The domperidone tablets conflict with the amitriptyline and i was becoming very ill due to this conflict until the doctor realised and stopped the one tablet. Thankfully the amount of attacks i get are still staying low but unfortunately i am still having to deal with them on a daily basis and now they are reduced it is very difficult to guess when an attack will happen so it makes my personal treatment very difficult as i have to plan as if an attack could happen at any moment making living life difficult again.

I have managed to get out and do some fishing just lately with my best friend Brian Chandler. We decided to join one of the syndicate lakes close to where i live and i really enjoyed getting out doing the thing i love the most , fishing. Now that i am back home again i felt really good the first couple of days back and then the depression started to take hold again as again i started to feel trapped in the flat and the sore skin and sore eyes are taking its toll on me. Appointments at the hospital have started to come trough and i have 3 in the next few weeks all for different things. The hernia has also stated to become more problematic again and i am getting a stinging pain just below the heart and when it comes it really scares me. I know its the hernia but that still doesn't make a difference and i have to rub my chest and massage the area to get the hernia to move and stop hurting so bad. I am still waiting on another endoscopy so they can see just how bad it has got. I have noticed certain foods like white bread or chocolate cause the hernia to play up and give me a lot of pain so i am starting to be careful with what i eat. I am wondering if the skin rashes and itching or crawling sensation isn't down to the hernia and it has now started to cause me other problems but only the doctors will know this and its a horrible waiting game to find anything out. I really hope they get to the bottom of these problems soon as i just don't know how much more i can take. All i want to do is get out and go fishing again so we are planning to get out in a couple of weeks. I don't care how ill i am i will still go as i would rather suffer on the lake side doing something i love than being stuck indoors suffering.

Illness , Stress and Debts Really Don't Mix

I am slowly coming to the conclusion that i have the worst of luck when it comes to my health and my condition. Just when i think things are improving and i will finally start to gain some control over this horrible condition i end up feeling worst than ever before. One of the main triggers for CH other than weather changes is stress, Due to stress being a big problem and constantly setting off attacks i took it upon myself to try and clear any debts i occurred from loans of purchases form years ago when i fell really ill and ended up in hospital and due to this i ended up missing payments and falling behind resulting in companies selling on the debts to other companies and the amount i owed gradually increased over time as each time it gets sold on it also gains charges.  I decided to get in contact with these companies and settle the debts hence relieving any stress i had on me with regards to money worries. However there is always one that falls through the net and went unsettled as i didn't realise i still owed the money. 

I tried to get in touch with the company but couldn't get any sense out of them as they seemed to be going through some difficulties of their own, Mackenzie Hall was the company and they went into financial difficulties a few years ago when i tried to contact them and arrange payment off my debt. They asked me about my illness and asked if i could send them a copy of my diagnosis and they would then take this into consideration. I then heard nothing from them for years. Last year i was contacted by a group called the PRA Group who made out that they were Mackenzie Hall just under a different name and time had come to settle my debt. This was actually a lie and Mackenzie Hall had ended up in financial difficulties and this company , PRA Group, had purchased the debts in a reduced bulk buy but didn't offer any reductions to the debtors who they chased to settle their debts. I then made an agreement to make weekly payments to get this debt cleared and stop any stress being caused making me ill. Since making the agreement a payment was delayed going through due to a bank holiday and my bank blocking money against direct debits that were due to come out straight after the bank holiday, this sometimes happens and has never bothered me.  I then get contacted by PRA group telling me the agreement has been cancelled and they had to make me go through all the paperwork again and re set up the agreement, crazy but understandable. 

This happened again and once again they called me and yet again i had to go through all the details and re set-up an agreement with them. Now i wouldn't mind so much but when you listen to them waffle on for almost an hour repeating the same stuff over and over again and keep asking you the same details that they already have one the system it really starts to become annoying. This started to stress me out and make me ill and i had informed them of my illness and what it was doing but they still continued. Low and behold last bank holiday (just gone) the inevitable happened and the payment didn't go out so i made sure i made the payment as quickly as possible a few days later to ensure i didn't fall behind and guess what? Yes you got it, they phoned me to tell me the agreement had been cancelled and started to rattle off the same information that i have heard no end of time and i really started to become ill, so much so i was actually physically sick from the stress and ended up having several severe attacks later that day that i know were from the stress as i haven't had attacks for over a week which is amazing for me. Now you would think having debts are stressful in themselves but i wouldn't mind if i owed thousands of pounds but this is for a stupid amount of less than £250. 

I know you are probably thinking well if its such a small amount why not just clear it off and end the stress. Well i would off after a couple of months and wouldn't have any more issues but now due to the arrogance of this company and the stress they have put me under it has now become principal of the whole matter as i told them time and time again i didn't want to keep going through the process for an hour each time causing me stress and making me ill yet they seem to refuse to listen so now they can wait for the money and they will get it in the weekly payments i originally set up and they can like it or lump it. If they don't want it then they can take me to court and i will gladly have my day and show the courts exactly what they are like. The last time they phoned me and tried to take me through the whole process again i quickly cut them off in mid sentence and told them straight i will continue to make the payments and they will get the money but if the don't want it then tough, have fun paying to take me to court the fools and quickly slammed the phone down. When i researched the company on-line i quickly found a pattern emerging of complaints about the company chasing sick and vulnerable people and even using illegal tactics to try and force people into paying debts such as sending suited and booted large men to peoples homes demanding payments when they legally are not allowed to do this. Only a court bailiff is allowed to approach anyone at their home for payments. 

I know all this probably sounds stupid and to have such a hassle over a small debt is a bit much but now it has become a personal principle and i WILL make them wait until it is paid off. If i had loads of debts i could understand the attitude and why companies would go to these lengths but i don't have any other debts that are outstanding. I have made sure my finances are clear and up to date and even one company that i did have a small debt with was good enough to cancel the debt due to the change in my health and the issues i now have. My advice to anyone who is reading this is to make sure you are debt free and if you do have debts to keep your payments and clear them as soon as you can as i have found that stress can be just as bad an illness and any other serious condition. I supposed i suffer more from stress due to the CH (Clusters) i get and also my Type 2 Bi-Polar that apparently i was born with but i keep under control and it is watched by family members to ensure i don't get into trouble. I have had very bad rashes, my hair has fallen out, i have been physically sick and ended up having severe cluster attacks all due to stress so the trick is to try and stay as stress free as is possible. I have been on stress management courses and even have special CD's and Tapes with music and sounds to listen to the help you relax and drop your stress levels but when idiots keep phoning you up and stressing you out over something so trivial it really makes my blood boil and it wont be long before i end up smashing my phone to bits.. 

Understanding what a Cluster Headache is.....

I have lost count of the amount of times i have been asked what on earth is cluster headaches? are they like migraines? or is it just a normal headache but you get lots off them? Surely you can't be in that much pain , its only a headache..!

Sometimes i just keep quiet and chuckle inside knowing that these people haven't got a clue and if the think a migraine is bad then they have never experienced real pain. There are other times where i would love to smack then across the head and tell them to get a grip and read up on it before you make judgements and comments about people who suffer the condition. How someone can comment when they have never seen let alone experienced an actual attack is just beyond comprehension. 

The truth of the matter is it is actually a nerve inside the brain that is either infected or damaged and when the nerve decides to play up, swell or start causing problems is when an attack arises and the person effected by this will then experience pain like no one can ever describe. Specialists who have actually suffered from the condition say it is like having a body part amputated with out anaesthetic and not actually passing out, having to ride the pain for the entire time. The pain level of these attacks are so strong that many beg for death within 5 minuets of experiencing the attack.

 If a sufferer doesn't have any kind of medication to help the effects of the attack then god help them as an attack can last well over an hour.  There is no cure for this condition and very little treatment so you cant actually stop the attack happening all you can do is shorten the length of the attack and help you to get through it by using some very strong medication that in itself causes many health problems. I personally don't know how i have managed myself over the years and wonder how i am still alive today and how i get through each day knowing an attack is just around the corner, but its the strength of knowing there are others just like me and people out there that are worst off than i am that keeps me going each day.

I pray to god no one i know ever has to deal with this condition and thank god that it can be passed on or caught. Why this happens to us we will never know and only through time as more and more people become aware of the condition and more research is done they may one day be able to understand it and treat it. I can't ever see that happening in my life time but with medication and medical research advancing over the years you never know, anything is possible. Until then it will remain probably THE most painful condition known to a human being and i wouldn't let an animal suffer as much as we have to suffer.

There are 2 types of CH sufferers

(1)  Episodic ( Where attacks come in bouts and can last a few weeks maybe a month and then you get long periods of being pain free in between bouts. This also means you can live a normal life during the pain free periods but when the attacks come your world changes) This is probably the most common type.

(2) Chronic ( This is when you have attacks on a daily basis and very few pain free periods. Sometimes attacks can be as many as 8 or 10 per day for extreme sufferers. Attacks Last over an hour at most times but can be shortened with medication. A chronic sufferer can become episodic with the help of strong medication.) This type is the worst and has a very low survival rate as most chronic sufferers have ended up committing suicide or dying from an attack related illness such as heart failure or Stroke

This is Why "CH" is nick named "Suicide Attacks" 

due to the chronic sufferers low survival rates . 

"I myself am a "Chronic" sufferer and i refuse to be beaten by the beast and i will fight this condition to the end with all my strength and will keep fighting until the day comes when i take my last breath" ( Martyn Russ )

The Beast Attacking Picture by a Cluster suferer

This is a diagram of what it feels like when the beats attacks

and the cluster headaches begin! 

I just can't believe my luck and what i have had to go through over the last couple of weeks

Just when you think things are beginning to improve something happens and makes you feel as though you are back where you started from. With the warmer weather fast approaching and the amount of attacks i get at an all time low i really thought it was time for big improvements. I had planned on a fishing trip with the private fishing club that i had created with a few friends of mine. We had planned on a social get together down on our local lake to give me a chance to get out and do some fishing, the thing i love most, and also to see some of the other anglers and get together for a friendly chat and a bit of fun. The morning i was due to go i woke up in the early hours with seriously bad pain across the shoulders and top of my back and also up both sides of my neck. I could hardly move and ended up having to postpone the social fishing trip and call the doctors to make an emergency appointment to see a doctor. When i managed to get to the doctors they told me i had most likely twisted the small ligament in my neck that connects to the shoulder on the right side and wasn't much i could do apart from take anti-inflammatory medication and wait for it to fix itself. The pain across the shoulder was just the pain travelling and making it feel worst than it was so all i could do was have a hot soak in the bath and try and ease the pain and rub gel into my shoulder to try and ease it.

To top things off i have been having problems with the neighbours cats sneaking into my flat when i take rubbish out or hang washing on the line and they have been leaving fleas in my apartment. When the fleas bite me i have been having a reaction to the bites so i ended up having to rip up my carpets and soft furnishings and throw them and then get a flea bomb and fumigate the flat completely. This got rid of the fleas but suddenly all i could feel was crawling all over my body and every now and again a sharp sting like bite sensation that resulted in small red spots on my body. I started to think the flat had been infested from my carpet as i got it off a neighbour who had it in storage for over a year and had cats in the same room it was stored. I believed the fleas must have laid eggs in the carpet and that's what was hatching and going on so i had to throw it away. I couldn't work out why after treating myself and the flat and washing every bit of bedding and clothing i had at boiling temperature to ensure nothing was there, i was still getting the crawling sensation and bites.  I started to think all sorts and it was driving me insane. I had spent a fortune on bug sprays and pesticides and not to mention the cost of having to now replace all the carpets in my flat and soft furnishings.

I then decided to pay my chemist a visit and explained what was going on and he stood there and laughed at me saying "i know how you feel, i have cats myself", Why on earth was he finding it so funny? He then explained that fleas can also carry viruses and when they bite you they can transfer the viral infection to you and this is what was going on. I wasn't actually getting bitten and there wasn't anything on me. i had done the right thing fumigating the flat and it was successful but i was now suffering from and infection that was attacking the nerves in my body. The small red spots were from the infection and the nerve ends and the sharp biting sensation was from the virus attacking the nerve ends resulting in a red mark on the body. He examined my body all over to make sure this was the case and told me to make an appointment wit the doctor as soon as possible. I explained ib am booked to see her a week Wednesday and he asked has the rash become worst or better. It was actually calming down so he feels that i am over the worst of it but i should still attend my appointment in case antibiotics are required as it could come back.

I just can't believe my luck and what i have had to go through over the last couple of weeks. Just when i thought things were getting so much better something had to happen and put me down. If i had cats or pets myself i could understand but to have to go through all this because of a neighbours pet is just beyond me. Well one thing is for sure i wont have to do any spring cleaning at the end of the month as my flat has never been so sterile. Not only did i do things like clothes , bedding and furniture but i bleached every floor and surface and scrubbed the entire flat from top to bottom. I placed pesticide in the cracks under the skirting boards and made sure every floor had been treated with stuff from the PDSA that will continue to kill any flea, ticks, mites or bugs for the next year. I never want to experience anything like this again as it really did make me ill. I had such a bad reaction to a flea bite i actually thought i was going to die. It seems ever since i had the Hiatus Hernia i have become allergic to some strange things that i was never allergic to before. So from now on i have to become extra careful on anything i do and hopefully as soon as the neck and back ease from all the pain i will get out and go on my fishing trip as i am really looking forwards to it.  Fingers crossed it will be in the next couple of weeks.