Fed up with repeating myself, pain and more pain all the time.

Once again i have been ignoring my updates on my blog. This isn't because i have suddenly become lazy or that i don't want to continue with the updates it just seemed lately i was just repeating myself over and over again after being woken consistently in the mornings by the beast and having to deal with the aftermath of pain and agony down my back and when i walk each day. I then have to worry about constant chest pains being caused by the hiatus hernia that i have and was told there is nothing they can do about it, i will just have to learn to live with the chest pains and chronic re-flux i now suffer from. Then when i try to go out to the shop i find i cant walk properly as the pain down both of my legs is so bad that i have to stop several times and sit down to take the weight of my legs. This has been getting gradually worst and some days are better than others. I have been referred to the specialists so am just waiting now on what they see in the test results and what help they can give me.

Eve since the cluster attacks became chronic back in 2009 and became unlivable by 2012 i have watched the left side of my body suddenly become problematic and strange things happening from my neck and down my back. This includes numbness and pain down the left arm and across the left chest scaring you into thinking you are about to have a heart attack. Shooting pains down my left leg in strange places and the left foot constantly tingling and going to sleep. Not to mention the amount of pain across my lower back i am getting and the pains being caused by the small lump on the left side of my spine. The sharp pains i get just under my left rear shoulder blade as though someone has stabbed you in the back and the sudden neck pains on both sides of my neck that constantly aggravate the CH condition and set off cluster attacks. These are the things i am now having to deal with on a daily basis and when you are not allowed to take very strong pain killers due to being addicted to them before, you can imagine i am in agony and a world of hell at the moment.

I am trying to get out as much as is humanly possible now things have become harder and i am finding that the distance i can now walk is a lot less than it used to be so i have to go carefully until i can find out what on earth is going on. When things started to go wrong with the left side of my body i had a feeling i would get problems later in life with that side of my body especially if the cluster attacks continued. I never for once thought it would all be starting this soon and getting bad so quickly. I was even planning on getting out and doing some winter fishing this year but even that has been put on hold until i can get some answers. One thing is for sure as soon as the weather gets better in the new year i will be making up for some lost time on our local lake as i have missed out on so much fishing this last year i am really going to make up for lost time. I don't care how much pain i am in i am making sure i spend most of my free time next year down by the lake side doing something i love to do and that's fishing. Hopefully getting out in the fresh air and the slight exercise will do me the world of good.

Well i have been and told the doctors about everything that is going on and my feelings and they have referred me to the specialists that i need to see but i have to be realistic its not going to happen over night and it will now probably be at the start of next year i will start getting the appointments through the door. All i can do for now is make sure i keep moving as much as i can so i don't stiffen up even if i cant walk for long at least i can still get about. Fingers crossed it wont be long before we get some answers and hopefully before my left side becomes worst than it already is. 

Winter Approaches and The attacks Become Regular.

It doesn't matter how many attacks you get and how regular they become you never can get used to the level of pain these attacks bring. A cluster attack is one of the worst things i have ever experienced and i understand why the condition is nick named "suicide headaches". There has been no end of times where the pain level was so high i was actually on the floor , on my knees, head in had praying to god for him to take me, for me to die and have the pain stop for ever. Some people may think you are just being stupid or over dramatic but until they ever experience the level of pain you get regular they would never be able to understand. It has taken a lot of effort and strength to stay focused and keep going despite having these attacks on a regular basis every day and being told i have to spend the rest of my life experiencing the same thing over and over again! I suppose it wouldn't be so bad if there was treatment you could have or there was something they could do but there isn't enough people who suffer this condition in the same way to warrant them spending money on research and treatment. In the USA they have begun research into the condition but there is still very little known about any successful treatments so hopefully as years go by the UK will also start researching into the condition and more and more will be learnt and possibly one day a cure would be found. Until this ever happens i suppose i am just another test subject where they can try different things and hope it works.

As the colder weather has no started approaching us , especially during the early hours, i am seeing an increase in the amount of attacks i hare to deal with and finding myself with less and less pain free days. The cold weather being one of my main triggers is really a pain in the backside (or head) excuse the pun. It means that during the winter months i can't really go out as much as i could during the summer months, not that i get outdoors much now days anyway. Since the condition turned chronic for me i haven't really been able to get out much due to having regular attacks but at different times in the day . There is no warning of the attacks so i can't even plan in between bouts. It's not helping that  i now have other health issues such as the hiatus hernia that causes me constant chest pains and chocking on my food and drink regular. I have just had an amazing appointment with the Gastroenterology specialists who have informed me that there is nothing more they can do for me. They an't operate on the hernia due to the position of it and i am on the correct medication i need to be on. So again its another condition that i will have to change my lifestyle and learn to live with. A pattern is starting to emerge as it seems lately i have things going wrong and when they do there is nothing any of the doctors or specialists can do to help me. Its really starting to become annoying and very depressing.

My walking is still very bad and if anything is getting worst each week. I can no longer walk more than 30 seconds wit out severe pain up the back of both of my legs start and then spread to the entire legs and up my back. Across the base of my back like a line and also up the left side of my back and into my neck. This pain is really bad when it starts and i have to take the weight off my feet and back before it will start to ease, Even sitting in one position for long periods of time is becoming more and more painful and i really don't know what to do. I have been back and fore the doctors and they are stumped! They haven't a clue what could be causing it. They say its possible i have a damaged nerve in my neck and that's whats causing all the other pains down my back and down my left arm. i have had an MRI on my neck and spinal cord at the top to see whats going on as my neck is in constant pain all the time. They still haven't had the results back so its a frustrating wait to find out if anything can be done. If they tell me i have another problem that they cant help me with will drive me over the edge. I know i have a problem in my neck and i know its effecting my walking and daily life but as to how bad the problem is i just don't know at the moment.

So much for pain free days, my pain free days are days with out attacks as i still get pains from my back, legs neck and chest during these days. I have actually forgotten what it is like to have a day with out any type of pain at all. if i did i think i would end up in shock or panic there was something wrong if i couldn't feel the pain. When i set out to fight this condition with every ounce of strength i had i didn't realize just how bad things would become at times and didn't realize i would end up with several health issues. I didn't know what else to do, i didn't want to lay down and give in thinking WOE is me and wanted to try and get on with life as normally as was possible. This condition has taken my life away from me , i don't go out, i cant socialize, i cant visit friends due to fear of having attacks when out and about. I can't have a relationship and women get to scared of the condition and then when they look at me , what future would they have with someone who is chronically ill most of the time. Cluster Headaches as they are called are not just a normal illness or condition as it strips you of all the quality of life you are used to when growing up and living normally. It destroys your self confidence and makes you live like a hermit afraid to go out in the cold air in fear of attacks coming. This illness is one of the loneliest illnesses i have every known.

No matter how bad things get i always try and say to myself there are people out there worst off than you , people who don't have long to live due to terminal illnesses and at least i have a life. Even though, i do wonder sometimes if this isn't worst than being in prison for life sentenced to death by slow painful suffering. All i can do is just to keep on pushing through, when i feel down try and find things to pick me up, when i am in pain just try to deal with it as best i can . I still have my fishing , even though i don't get out as much as i would like to. At least its something to keep my mind off my illness and something i can look forwards to. Being on the bank of a lake or river, watching the world go by, listening to the water and the wildlife whilst waiting for the fish to bite is my little piece of heaven and something i can still hold on to.  Even with the colder weather now arriving and my attacks increasing i can still get out and do a bit of fishing, if the beast attacks i can lie back in the bivvi, take my injection and wait for the pain to end and then just carry on. No one can see me in the bivvi so having an attack on the bank doesn't bother me but i would still rather be fishing with out pain. Lets hope i can get a few trips in before the weather really becomes to cold to do anything.

Winters knocking at the door, and with the cold weather so comes the beast!

Its that time of year again where the weather is now turning very cold in the mornings and warming up in the day. Autumn is a very strange time of year with the weather and an extremely frustrating time of year when it comes to my condition and the cluster attacks. The early hours always wake me up with the cold bite on the top of the head as the temperature drops and suddenly the beast attacks. The same thing happens each time with the pain starting just above the jaw and below the left eye and then suddenly spreads upwards behind the eye and over the top of the left side of my head into the back of my neck. The attacks comes on so quickly you have no chance to prepare yourself and all you can do is either dive for your injection and pray it aborts the attack or just have to ride out the pain for over an hour each time. No matter how many hundreds and thousands of attacks i have had i still cant get used to them and they always feel as though they are stronger and a lot worst than the ones before. Having the cold weather as my main trigger makes life hell when winter comes and it always starts the same time each year just as the autumn morning chill arrives my attacks increase.

This yea we actually managed to get my attacks down to half what i normally get and having at least 2 or 3 days being attack free. This was great but unfortunately due to all the other health problems i have been having these days are no longer pain free days and if i am not suffering from cluster attacks i am suffering from pain from the hiatus hernia or the damaged nerve in my neck and down the left side of my back. This all topped of with severe pain across the lower back when i walk and up both of my legs. I have had a scan to see if there are blood clots and all those were clear and my circulation is fine. I have had tests on my heart due to severe chest pains and have been told the heart is fine but they are worried about my level of cholesterol and possibility of angina so i am now waiting for a heart scan and my next appointment with cardiology. The hernia and the problem when i eat and drink is becoming so bad and giving me so much pain each day its becoming a real problem but thankfully i have my appointment a week Tuesday so hopefully we will get something sorted or at least start treatment to help solve this issue.

I have had my MRI scan on the neck to fond out what is going on with the nerve and the pain i am getting down my back and the trouble when i walk but i have to wait for the results. I will no have to book an appointment with the doctor to find out what it is, the extent of the damage and what can be done to help ease all this pain all the time. I am very reluctant to start taking any kind of strong pain killer as i have been down that road before and it lead me into big problems but there is no way i can live my life with all this pain all the time. Cardiology was very concerned at the rate my heart is all the time due to pain and was discussing putting me on medication to slow the heart down as they said i just cant go on like this. Not that there is much i can do about it except wait for appointments and treatment. It just seems as soon as they find out what one thing is something else comes along and makes everything more difficult and harder to diagnose a problem. Ever since they started experimenting with different medications to get the clusters under control my health has rapidly gone down hill. I just wish for once i could catch a break.

Once again i have had so many different problems with my health my mind has been so occupied

Once again i have had so many different problems with my health my mind has been so occupied i had forgotten to update my blog. Again i have been having problems whilst walking with pains up both of my legs. i have had numerous chest pains from the nerve in my neck, the hiatus hernia and now suspected angina which i am still unconvinced i have. Not to mention the early morning wake up calls from the beast and the cluster attacks i get on a regular basis. We have managed to get the number attacks down by half over the last 5 years of treatment but i am still no averaging between 2 and 4 attacks each day with only 2 or 3 days in a week staying attack free. Even though i do get attack free days unfortunately due to all the other issues i have going on they are no longer pain free days.

I am once again waiting for an appointment to try and investigate the pains in my legs and due to go for an MRI on my neck and spine for the trouble and pain in my neck ,left arm and chest. They have asked me to attend the x-ray clinic on Sunday morning so they can get the scan done and thankfully tomorrow i have my appointment with cardiology so we can check the angina and rule it out as i still feel its all down to the nerve that i am getting chest pains and pain down my left arm including numbness.  When i get these pains its strange how all my energy drains out of my body and my heart rate increases o much it feels like its trying to burst out of my chest/ When i had an ECG at the doctors it showed an abnormality in the left atrium but i am not convinced its the heart or angina.  Something tells me its all to do with the nerve damage or a trapped nerve in my neck and something is going on with the neck that is causing these very strange symptoms,

Its strange , but ever since i had the hiatus hernia weird things have been happening with my health. i am getting reoccurring infections, strange rashes and spots over my body and hands, oral thrush that keeps coming back even after intense treatment. Strange pains when i eat or drink not to mention my food and drink trapping all the time and almost choking me. Since the hernia started to play up and cause these problems i have watched my health go down hill rapidly and no matter how much i try and fight these things it just seems to make it worst. It makes me wonder if its not ALL caused from the hernia and side effects of ,medication i am on. As they do say the hernia can cause you to become allergic to things you have tolerated all of your life and make you react strangely to different medications. It would also make sense why none of the doctors seem to know what on earth is going on with me apart from the main illnesses that i have. 

When i was told that i had a rare condition that there was no cure and very little treatment for and that i would have to learn to live with it for the rest of my life i never once thought i would be fighting all different types of health problems and i would be going through so much pain and anxiety all the time not knowing what on earth is going on with me. I try and keep a happy face and hide what i am going through with other people around me but there are times when i just wonder how much more of this can i take. if its not one thing its another and as soon as we start to get some answers something else comes along and throws a spanner in the works, so to speak.  I just wish i could catch a break and finally know whats happening and get the treatment i need so i can at least live comfortable and live some kind of life. All that's happening at the moments is pain and more pain and constant struggle with my moods and depression due to all the things going on with me. 

winter is now approaching quickly and i have to start preparing for the constant visits from the beast. the cold weather is when my CH condition becomes uncontrollable and at its worst. Constant attacks every day just from the cold and non stop pain and agony when moving around the flat. I am praying to god this year will be a mild winter so things wont become as bad as they have in previous years. At the moment i have noticed more attacks in the early hours due the temperature dropping between midnight and 4 in the morning. This temperature drop instantly triggers an attack and there is nothing i can do to avoid it. Also as winter comes so does more low pressure weather which in turn triggers my attacks i don't know why low pressure seems to be a trigger it must be something to do with the pressure on the brain and head. All i do know is during winter we get a lot more of them and that results in a lot of pain for me to deal with.

Winter Approaches and so do the attacks! More health problems appearing...

As the weather has started to change so has the nature of the beast. the amount of attacks i get in a day is slowly increasing once again and i am finding less days pain free just like before. it seems to happen every year, as winter arrives so do the attacks and the pain. The low pressure fronts we get as the colder and wetter weather approaches seems to be a major trigger for the cluster attacks. I am not sure if the brain can sense such changes or if its the actual pressure on the head that causes the attacks but one thing is for sure its the colder weather that causes me the most pain.

 The last few weeks i am finding that every morning i am being woken at 3 or 4 am and sometimes even earlier due to the pain starting at the front of the left side of my face. One problem i have is pain in the neck that also seems to aggravate the condition and can cause it so much pain that it will eventually set off a full attack. i have spoken with the doctor and there isn't really much she can do other than refer me to a specialist for an MRI scan on the neck and the spinal cord as she feels that is where the problem may lie. In the mean time i just have to put up with the pain and the constant attacks and hope they don't take too long arranging an appointment for me.

One of the biggest problems i seem to be having at the moment is with my walking and pain in both my legs 30 seconds after moving. I have been to the hospital and they have scanned them for blood clots but nothing showed up and the doctor checked my circulation and it seemed to be fine. Yet i am still getting pain right up both legs when i move about and can hardly walk. I am also finding i am getting pain down my left arm which at first was a bit worrying but i have had my heart checked and there was no issues but still i get the pain and the feeling like numbness. I am also getting it from the shoulder at an angle across the front of the left of my chest. The doctor has referred me to the vascular specialist as she is unsure why my legs are so problematic and what on earth is going on with all these other symptoms. It could be that there is a nerve trapping in the neck that is causing these problems but until they actually take a look at me its a worrying situation.

I have my appointment at the Gastroenterology department in Llandoch hospital at the end of the month, next week, and hopefully they will be able to take a look at me and tell me what is happening about my hiatus hernia and whether they are going to operate or not. They will also be able to look at the reason why food and drink is trapping when i eat and causing me to choke all the time. It just seems ever since i had the hiatus hernia all hell has broken loose. The amount of problems i am getting is crazy. I actually started writing this blog the other dasy but had to stop suddenly due to pains in the chest again and this time it was accompanied by numbness and pain down the left arm. I originally thought that it was the hernia playing up again and the nerve in my neck causing a problem but to be on the safe side i rang the doctors and was called over there to be seen on an emergency appointment.

The doctor was able to confirm i have a damaged ir trapped nerve in the neck as she pushed on a few spots of the neck and then suddenly i was getting extreme shooting pains down the left arm to the tips of my fingers. The confusing thing was the numbness in the arm and the chest pains so after she examined me she insisted i have an ECG just to make sure everything was ok. I was glad she did insist and so was she as after i had the ECG it showed an abnormality in my left Atrium of the heart and she has now put me on aspirin and referred me to cardiology. I Just cant believe my luck! My health has been gradually getting worst ever since i the hernia came about and i first started the drug trials with different medications in order to get control of the beats and hopefully stop the cluster headaches all together. not only did we fail in controlling the attacks and finding the right combination of medication to get it to go into remission but it has now caused me serious problems with my health. 

 There's not really much i can do about it other than except the situation and get the treatment i desperately need and hope things will improve over time and not get any worst than it already is.  i am determined not to let this effect my fishing and will still get out as much as i can on the local waters. Ok i will now have to take things easy and keep an eye on myself during the trips but i refuse to loose the one thing i love so much and that is keeping me sane. Its hard enough to get out as it is  the last thing i need is more problems stopping going out altogether so hopefully the referral wont take long and i will get some idea on how i can manage the condition and continue my sport. 
  

I would fight it all the way but sometimes i really wonder if i have the strength...

The worst thing about being ill is having to wait for referrals or appointment from your doctor and specialists and especially when they haven't got a clue exactly whats wrong with you. i can understand that the health service is overwhelmed with people taking advantage of our free medical treatment and services and i can understand that the staff are stretched to the max. What i can't understand is when things are starting to become serious why they continue to drag their feet and take ages to get you the help you need. usually that help comes either when its too late to do anything about it or just before things get out of control. 

I was diagnosed with CH Cluster headaches or as the Americans now call it, Hortons Neuralgia in 2012 just after a huge bout of attacks and when my condition changed from an episodic sufferer with a few attacks every couple of months to a chronic sufferer with attacks happening on a daily basis with a record number of attacks in one day hitting a massive 12 attacks. The average number of attacks i would get was between 6 to 8 per day and now i am under medication and treatment this has now dropped to between 2 and 4 per day. Thankfully i no longer get them every day and manage top get at least 2 to 3 days per week with no attacks at all but these are intermittent and i never know when i am going to be completely pain free.

Since things started to get worst with my health i now have pains down the left side of my back and the base of my spine and i also get constant pain in the left side of my neck. Dispite constant treatment under the physio therapists to try and ease this problem it has been gradually getting worst over the last 12 months and i now have to deal with pain EVERY day even though i get days with no CH attacks i still have to deal with the back and neck pains. No matter what medication i take or pain killers this pain never seems to go away and is slowly grinding me down daily. I have been back and fore for appointment after appointment and they still are no closer to a solution or any idea what is going on.

After being experimented on for a couple of years with different medication in order to get the clusters under control and having to deal with side effects and allergic reactions that almost killed me, I now have to suffer from a Hiatus hernia that seems to be causing infection after infection and causing allergies to things i previously never had a problem with. Not only do i have to put up with these constant infections but its is now causing so much pain in the chest on a daily basis that several times over that last year i was rushed into hospital in fear of heart problems and even though i told them it was the hernia they made sure i was put through every test possible to ensure my heart was fine. It has now got to the stage where i can no longer eat with out experiencing food and liquids trapping and almost chocking me and along with this comes sharp stinging pain to the chest on the left side where the hernia is.

I am still waiting to see if they are going to do anything about it and in the mean time my health is just getting worst and worst. I started to have problems walking every now and again over a year ago where once every couple of months i would get this strange feeling in my legs like pressure is building up and the muscles are rock solid and when i try and walk it hurts like crazy. This seemed to come and go and i always put it down to the nerve in my back that is causing all the other pains. Now all of a sudden its become a daily problem and now i can hardly walk normal at all. Its always there and as soon as i start to walk, literally 30 seconds into moving, the pain begins and every movement is agony. I have been to see the doctor on several occasions complaining about this and they have no clue what could be causing it. Again i am having more blood tests and again i have to wait to see if they find anything out or to see what they can do about it, Every day that passes it is becoming harder and harder to walk any type of distance and i am finding myself trapped in my flat once again even though i have been trying to make an effort to get out and do something like fishing but every time i plan a trip something happens or i am too ill to go. Summer has come and gone and i think i have only been out fishing a total of 4 times all year and its really starting to get to me. The depression side of my illness is very hard to control lately and i am really struggling.

It seems no matter how much i complain to the doctors and ask for help nothing seems to get done and all they can do is shrug their shoulders and refer me on to someone else who ends up clueless as to whats going on. The amount of test i have had over the last year is just getting crazy and i have had so many different appointments i could actually set up home in the hospital (wouldn't be a bad idea) yet i am still clueless as to what has caused it and what can be done to make me well'ish again. I have more appointments coming up in the next couple of weeks and some with my specialist at the hospital so i am going to ask and see what can be done about my situation and the difficulty i have walking and moving about. Surely they must have some idea what it could be and i think if i knew what it was i wouldn't worry or stress so much. I just wish i could catch a break and i know i am going to have to really try and make the effort to get out and go fishing over the next couple of months and not let this illness get the better of me. I promised myself i wouldn't give in to it and wouldn't let it stop me trying to live as normal a life as i can and i would fight it all the way but sometimes i really wonder if i have the strength anymore. 

More and more health problems as time goes on. I just wish i could get a break!

As usual as soon as things start to improve and i think i have a strong hold on my health something happens and feel like i am back where i started. I had my appointment for the 2nd Endoscopy to see why food and drink was trapping all the time and causing me pain in the chest and when they looked they found that the Hiatus hernia hasn't got any worst and isn't causing a blockage but when they tried to get the camera down my throat they had problems. The entrance to the esophagus kept staying closed instead of opening up after swallowing , they made me swallow twice with the tube down my throat and still she couldn't get it to go down. Eventually i had to push on my chest with my hand, exactly the same thing when food traps, and the entrance opened and they were able to take a look.

The specialist seems to think i have developed a rare condition and had to take 4 biopsies to do some tests on and see if she is right. She also said the problem with the entrance to my esophagus could be from having spasms and that's the reason why its staying closed. This could be the reason why food keeps trapping and is also a big problem that needs further investigation and if it closes tight whilst i am asleep i wont be able to breath properly and could suffer asphyxiation during me sleep. I really didn't like the sound of that news but she assured me this is VERY rare as the body naturally will awaken me due to trying to protect itself and get oxygen to the brain.  The only time i have to be careful is if i am ever under sedation where i will stay asleep. This is the first time i have ever heard of such a thing but i am sure they know what they are talking about.

I now have to wait 2 weeks for the results and am booked in ready with my doctor to see what can be done about it and how we can continue with the hiatus hernia and all the infections and problems it keeps causing me. I am also being referred to a  specialist who deals with this kind of stuff and also the rare condition they were talking abut so god only knows how long this will now take. I have also been getting problems with my walking all of a sudden. I started getting them at the beginning of last year when i was having major pain in my back. As i walk i suddenly find that pressure is building or my muscles are completely tensed up and it begins to hurt with each step i take. As i walk further or try to ignore it the pain just increases to a level where i can no longer walk let alone stand and have to sit down where ever i am and take the weight off my legs. After a couple of minuets it starts to ease and then i can continue my journey. I am finding i cant walk for more than 2 to 3 minuets before having to stop and instead of it happening once ever week or two it has now become a daily issue as from last week.

My doctor was very concerned when i reported this and sent my straight up the hospital to have a scan for any blood clots on the legs. They didn't find any major clots ion the main veins but did find a small lump in what the call a secondary vein and i was on blood thinning tablets and medication to break it down. Within a week it was gone so god knows what it was but the doctor ensures me it wasn't a clot. She seems to think its a fatty build up such as a cholesterol pocket and with the help of the medication this has now been broken down. It all sounds a bit strange to me as i thought clots were fatty build ups but apparently a blood clot is actually blood. All i know is i don't have any clots and the circulation in my legs is fine so what is causing all this pain and weakness as i walk is a mystery until we get the results of blood tests back. I have lost count of how many different blood tests i have had over the last few years but one thing i do know my veins in my arms are now buggered and there is so much scar tissue they have become unaccessible. 

When they were trying to sedate me for the endoscopy they turned round and told me i have rhino skin on my hands as the skin has become so hard they almost couldn't get a needle in. They really had to push hard which resulted in a lot of pain as the needle went in but eventually after 4 attempts they found the vein. Its crazy how much treatment i have been having over the last 6 years and my personal medical file is massive. I have also been keeping copies of all my diagnosis's and my appointment letters and i have now filled a file cabinet at the side of my desk. Its just getting crazy. I am actually starting to think they are using me as a Ginny Pig and seeing what medications they can give me and what side effects it may have. I know that's not true , its just how i feel lately.  Why can't things just be simple and say "this is what you have...! and "This is the treatment you need!" , instead with me its test after test and then more tests. It was bad enough being diagnosed with cluster attacks and finding out there isn't a cure but now i am finding more and more health problems as time goes on. I just wish i could get a break!

Attacks are increasing and health going down hill, but its chin up and get on with it.....

The last couple of months has seen a huge decrease in the number of attacks i have been getting on a daily basis. it started when i was put onto Amitriptyline on a regular dose of 10 mg. I ended up having to stop this medication as the Hiatus Hernia i have has become so problematic i can no longer eat and drink with out pain and chocking and having to massage my chest to make things pass through. I ended up having to take Domperidone which is used to help food and liquids pass through the upper stomach a lot quicker than usual. This seemed to help and things became easier but the attacks didn't come back to the level they were before and i was grateful that they continued to decrease in number.

I have had to wait a while for an appointment to see how bad the hernia has become and during this time i have hod loads of strange things happen and problems arise. I have been getting reoccurring infections of the chest and throat and constant fungal infections within the mouth including oral thrush. I have been getting rashes that appear from no where and the latest thing is to do with my walking. I don't know if its from the attacks i get or a side effect of something else caused by the hernia but every time i try and walk to the shops i can't seem to walk very far with out being in extreme agony. The muscles in my legs feel as though they are both constantly tense and the legs hurt up the front and the back of both. The pain turns to a burning pain when i try and walk that little bit more after they start to hurt and what is causing it i really don't know.

I reported it to the doctor a couple of weeks ago and she rushed me up the hospital to have both of my legs scanned in case of a blood clot that could be causing it but nothing showed up.  It doesn't matter if i have been rested for a while or i am doing something strenuous it seems to come straight away after 30 seconds of walking and takes a good 10 minuets to ease off after i sit down and take the weight off my legs. If this wasn't bad enough my attacks have decided to return and once again i am getting woken by the beast in the early hours. I am booked to go into hospital once again on Thursday for an endoscopy to see how bad the hernia has become and they will then tell me exactly what they are going to do about it and whether i need an operation to correct it. 

I also have an appointment the day before with the physiotherapist who has been trying to help me buy using small and simple exercises to ease the pain in my neck and back but unfortunately they haven't helped at all and in fact has started to make things a lot worst as i am now in constant pain with my back all down the left side and every time i do these little exercises i end up in more pain. They also seem to be aggravating my cluster attacks so when i see her next i am going to have to insist we stop them for a while until i can get some sort of control over the things that are going on. Its bad enough having to deal with one problem at a time but with me it seems i always have two or three different things going on all the time and this is really making my life difficult.

My luck as far as my health is concerned has been really poor and i seem to be getting worst not better.l Every time i think i have one thing under control something else comes along to mess things up again and no matter how hard i try and manage these things i just cant seem to get a grip of things. My depression has been all over the place lately and sometimes i wonder how on earth i have managed to continue up to this point. It doesn't help the amount of medication i have been having to take all the time. Not only has it messed the body up and the bowels but also my stomach and i am now paying the price for taking so many tablets. My stomach feels like a washing machine constantly tumbling and bubbling with wind. I am constantly bloated which also effects the hernia and causes me a lot of pain just above my stomach and under the chest not to mention the amount of cramps i get from the bowels.

I just wish i could have a full MOT and once sorted i wouldn't have to take another tablet and could just get on with my life. Ever since all this started i feel as though my life has been taken away from me and i now live in a permanent cocoon keeping me from the outside world and enjoying what life has to offer. I am watching things just pass me by, watching other peoples families grow and children grow up and i feel like i am missing out on so much yet there is nothing i can do to change this.  I try to hold on to the small things i still have such as my computer and the web sites i now run and also my fishing when i am well enough to do it. These are the only things that are keeping ,me sane at the moment and with my fishing eb site growing rapidly and becoming more and more popular each day it gives me something to fill my time and keep me busy.

Maybe one day the attacks will ease completely and the cluster headaches will go into remission or become episodic once again and i would only have to deal with them once or twice a year for a short period but that seems to be wishful thinking. With the attacks once again on the increase and my health rapidly becoming worst i just don't know what to do in order to improve my situation and can only hope and pray that the treatment i get over the next couple of months will help a little and ease a few things off for a while. Lets hope i can get out and do a bit more fishing over the next few months as i have missed out on so many trips this year due to illness and pain so i need to make up for lost time and force myself to get out and stop shutting myself away in the flat in fear of attacks all the time. I am planning on a fishing trip in the next few days and weeks so fingers crossed all goes to plan and nothing comes along to mess it up.

It Don't Rain, It Pours..... Time for an Operation!

Well every time i think my health is improving something happens and i am back to square one. Just as the attacks started to ease off and become manageable again the hiatus hernia has decided to become so problematic that not only am i getting pain daily and problems with eating and drinking but it is also causing infections that keep returning once treatment has finished. Talk about having bad luck when it comes to my health. Each time i eat something or drink it seems to trap at the top of my chest and doesn't pass through properly. This then causes me stinging pain and i have to massage my chest and push inwards with my hands until i feel the hernia move and pop and the food or fluid finally passes through bubbling as it goes, which feels really strange. This is the only way i can eat or drink.

Again my eyes have started to become sore all the time and i am getting strange rashes appear over the body and the skin sometimes becomes red and sore down my arms. This is accompanied my a feeling of weakness and tiredness all the time and a bad case of oral thrush that i have been constantly treating now for well over 6 months. I visited the doctors once again and they have now done an emergency referral to get the hernia operated on and sorted out once and for all as its affecting me so badly. Again it has caused an infection in the chest area but i cant have antibiotics as i have only just finished 2 different types and by giving me more will cause an immunity to them so my body has the fight it naturally until i have the operation. The thrush is so bad it has effected my taste and everything tastes disgusting and my mouth constantly feels sore.

Suddenly i am having problems walking and can no longer walk to my local shop with out my legs turning to jelly and becoming so painful i can't stand. The doctor rushed me into the hospital in case it was a clot that had appeared in the lower legs but everything was clear so it looks like its the nerve that is causing me pain in the back. It seems like its effecting my walking a lot worst than usual. I have been getting a few bad cluster attacks over the last week as we have been having some strange very hot weather. Although the temperature is up and some days it is very sunny it still seems very close and there is an electrical feeling in the air as though a storm is on its way and its this that seems to effect my head and nerve and bring on attacks when i least expect them.

I am hoping the hospital wont take too long to arrange the appointment for the pre op and then the actual operation itself. Don't get me wrong no one wants an operation and least of all me but i know its going to improve things at the moment. I am so grateful technology and medical treatment has improved in leaps and bounds over the years as the doctor informed me 10 years ago they would have had to split my chest open to operate and the hiatus hernia resulting in recovery and hospitalization that could last for months or years. now days they do it through keyhole surgery and i could be in in the morning and back home the same evening. The one thing i am not looking forwards to is having the camera down the throat again so they can see the position of the hernia and just how bad it has become. the last time i had it was bad enough and couldn't stop gagging so i am praying it will be done quickly and things will be solved sooner rather than later.

The early morning wake up attacks are doing my head in!

Even though i have been getting less attacks than i usually get so far this year i am still struggling to cope with the early morning wake up calls from the beast. Every morning for the last 2 months i have been woken up at 2 am or 3 am with some massive attacks starting as soon as i open my eyes. I think having to sleep at an angle because of the hiatus hernia is aggravating the cluster attacks and making the morning one more regular due to lack of sleep and discomfort. I have tried laying flat for a couple of days to see if it helped but nothing changed and all that happened was i was wheezing as i breath due to the hernia blocking my airway and this kept waking me up every hour through the night. Thankfully i am due to see the doctor on Tuesday as i really need them to chase up the treatment for the hernia as now food and drink is trapping all the time and every day i am in agony with soreness and stinging pain in the chest. Every time i eat and drink and swallow it just traps there and i have to push on my chest hard for it top pass through and sometimes i have to massage it for a while as it can be stubborn and not let anything pass.

 It has started to get worst over a period of time and if its ;left i think i will have problems eating and drinking permanently and it will eventually end up with me being unable to eat or drink anything and then i could be in real trouble. I had to cancel my last appointment with the Physiotherapist as i was in agony after doing the exercises that she gave me to help my neck and back as it just seemed to make my attacks worst. I started to get severe attacks during the day and they kept on returning so i ended up cutting the amount of exercises by half to see if it would help but still i was getting problems. I am due to see them again on Wednesday so they are gong to have to see if there is something else they can recommend as these exercises seem to cause me too much pain. Its bad enough i have to deal with pain every day anyway so i really don't need it being made any worst than it already is. Lets hope there is something else i can do to help me manage all the pain. 

The rest of my treatment is on hold at the moment as there is nothing more they can do until this stupid hernia gets sorted out. A Hiatus Hernia is probably the worst kind and since i have had it all sorts of strange things have been going on. i have become allergic to things i have never been allergic to before. I have been getting severe chest pains and been rushed into hospital more than 5 times with them thinking i am having a heart attack and it turned out to be the hernia playing up and causing me pain. I have been getting strange rashes and sore eyes for no reason as though i have suddenly developed hay fever and my skin suddenly becomes bright red and sore for a short period for no reason at all. All this started when the hernia started and since then i have been living a nightmare. I am praying they will do something about it the next time they shove the camera down my throat to see if it has become worst or to see what else is going on.

 The constant infections and oral thrush and fungal infections in the chest is really getting to me so i pray to god it will all soon get sorted. The trouble is over the last few years the hospitals have become so busy and understaffed its crazy waiting months and even years for any appointments or treatment so god only knows how long i will end up having to suffer. It took long enough to get my appointment with physiotherapy, it was just over a year and 3 months before i received the letter inviting me to call and book my assessment appointment and it was classed as urgent as i was referred whilst i was in hospital being treated for constant cluster attacks and severe neck pain. The last time i saw my neurologist they then sent me a letter instructing the doctor to expedite my appointment for the hernia so i will take that with me when i go to see the doctor on Tuesday and hopefully they can then get something arranged. Until then i just have to wait and suffer in silence. 

Waiting over a year for an appointment with the physiotherapist

After waiting over a year for an appointment with the physiotherapist i finally managed to get seen only to find out there isn't really much they are able to do for me. The damaged nerve in the neck and the back is just way to damaged to do anything with. I can't have an operation to repair it and i cant get treatment to make it better so i just have to put up with the pain and trouble i am getting on a regular basis. They can help me manage it a bit better than i have been by using very small and easy exercises that will help ease the tension in the muscles around the damaged nerve. They have given me 4 small exercises that should do the trick and i have to do them every day.

I started the program with no trouble gradually building up over the first couple of days but than after a week of doing it i ran into trouble. All of a sudden my attacks started to become regular again and i had to put up with 4 huge attacks one after another. This is because i aggravated the nerve in the neck and the muscles either side causing it to set off my cluster attacks. I really tried to get to grips with the program but it just seems to cause me more pain and trouble than its worth. I am scheduled to see them again in a weeks time so i am hoping there is some other way we can help my condition and help me to manage all the pain and problems, that are slowly getting worst, with my neck and my back.

Every day i experience sharp shooting pains up the left side of my back just left of the spine. This pain shoots into the base of my neck on the left side effecting my shoulder. I have also been waking up with a complete dean left arm. Its not from cutting off the circulation in your sleep like i have actually done a few times and within seconds get the feeling of blood rush back into the arm and tingling from the hands up the arm. This is different, it actually stays dead for several minuets and when it does come back to life i don't get any tingling sensation i just have a dead arm feeling in the upper muscle of the left arm as though someone has punched me in the arm really hard. Why my arm keeps going dead is anyone's guess but i am assuming it has something to do with the nerves on the left side of my body and the problems i have been having with my neck and my back.

My neck is as painful as it has ever been and keeps flaring up and causing me a lot of discomfort. When its at its worst i can hard;ly turn my neck left or right with out getting very bad pains. Even when the pain is minimal i still cant look over either shoulder and place my chin into my chest as it just causes too much pain and agony. I can look up with out any problems or pain which i find strange but i can feel a line down the back of my head into my neck and then down the left side of the body that i can only assume is the nerve that is causing all the problems. The other morning i woke up in the early hours with yet another visit from the beast. The attack started around 3 am and i can only assume it was the cold and drop in temperature that set it off. The strange thing about this attack is the entire left side of the back of my head went ice cold. A really strange sensation that i have only had a couple of times and is very scary when it happens.

Although i am still having major health issues and my hiatus hernia is causing so many problems i can hardly eat or drink properly i am still having the lowest amount of attacks i have ever had. he total amount of attacks i get on a daily basis has halved and i now find myself with more attacks free days the ever before but they still aren't  pain free days as i have to contend with the back and the neck playing up and also the hernia causing problems. My luck regarding my health has been really bad the last 10+ years and i am hoping and praying to god for it to change soon. I have managed to get out fishing a couple of times over the last few months but have had to deal with attacks whilst on the bank. I am hoping to get a=out a bit more in the future as i feel i need to start getting out of the flat and in the fresh air a bit more before it starts to drive me completely insane. The doctors have started me on a testosterone replacement program as my levels suddenly dropped to a very low level at the start of the year and i have also reduced the amount of simvastatin i take for cholesterol which is a good sign as it means i am starting to get it under control.

I have only been on the testosterone replacement for a couple of days and already i am feeling a bit more positive in myself and am grateful that the medication and treatment has all started and slowly but surely i am learning to live with this condition. If someone was to tell me 10 years ago that i would be living with a rare condition that there is no cure for and very little treatment and that i would have to be in severe pain every day for the rest of my life i don't think i would have been able to continue and wouldn't have believed them. Now that i am under treatment and am learning how to deal with the constant attacks and pain its starting to become second nature. I really don't think i will ever get used to the level of pain the cluster attacks cause and i will always be scared of being out in the cold in case it sets off attacks but at least i am starting to learn how to live as normal a life as i can considering the amout of health issues i have. I just really hope it gets better and not worst again!

More attacks during the early hours.

Once again i have started being woken up in the early hours by a visit from the beast. Just as the temperature seems to drop between 2 am and 3 am i seem to be effected and i get a wake up call from hell. the attacks are always the same and seem to start from the top of the jaw on the left side of my face , travel up behind the eye and over the top of the head reaching into the back of my neck. At first when i open my eyes i have a few seconds of confusion as to why i have suddenly woken up and what is happening and that when the pain kicks in. just as the brain realises i am about to have an attack it starts and the pain begins to shoot over the head. You would think, after having so many attacks, that i would get used to them by now. No matter how regular they are they always seem worst than before and always seem more painful. Every time i have an attack i always end up drained of all energy. The high pain level seems to take everything i have got to be able to handle it and ride the pain. Even when i take my injections i still have to endure the pain for a certain amount of time before they take effect.

The pain in my neck has also been getting gradually worst as time goes on but at least i am now under physiotherapy. I had my assessment the other day and they told me there wasn't really much they can do for me apart from trying small exercises to help manage the pain and improve my movement. They are concerned that i am shut away in my flat all the time but thats something i have to address at a later date as for the time being i have no choice, i am either in too much pain to move around or walk anywhere or i am in fear of having attacks whilst out and about so no matter what i do i just cant seem to win at the moment.  I do try and get out and go fishing when ever i get a chance or i feel well enough but unfortunately its not as often as i want at the moment. i will make the effort to get out more often and do some more fishing, at least once a week starting next month as with the summer comes more pain free days. I am just hoping that when winter returns i don't end up having to deal with more attacks as i usually do. So far the attacks have reduced to at least 50% less than what i was getting and i am praying to god that they will say that way.

After being told by the specialist at the hospital there isn't much more they can do for me now apart from help me manage my pain i have found out there is still a couple of medications that i can try as a last resort. They also said they could refer me to London for the specialists, who are actually working on this illness, to take a look at me and investigate the reason why i have become a chronic sufferer and why it has stayed that way even though we have thrown all sorts of medication at it to try and get it to go into remission. It does give me a little more hop that still something can be done and that i could get these attacks under control and manage my condition successfully  They also mentioned they wont be able to give me any more treatment until they get this hiatus hernia sorted out as it is stopping me from having these other medications so i now have to arrange an appointment with my new doctor and try and get her to expedite my appointment for the hernia and chase it up so we can get it sorted once and for all. The hernia has become very problematic and is causing me a lot of pain and discomfort on a daily basis now. I cant eat or drink properly with out things trapping and almost chocking me and also giving me sharp stinging pain in the chest.

Even though i still have many health problems and have a long way to go before i start to claim back some sort of quality of life i am feeling a bit more positive than i normally am. I have been having difficulties with the bi-polar and feeling very low a lot of the time but i have tried my hardest to shrug it off and just get on with things even though i just don't feel like it. After going fishing the other weekend i felt great when i got home and its crazy to think that no matter how bad or low i feel when i go fishing i always seem to forget all about it and feel great for days after my trip. This i one of the reasons i love fishing so much and i really can't wait until i get to go again so i am planning a trip in a couple of weeks or maybe even sooner. I am just hoping the weather is kind to me and i get the chance to get out very soon.

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 )