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!