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.