So much pain at times you pray for death….

Suddenly you awaken from a deep sleep, the left eye begins to water as if someone has switched on a tap and then you suddenly break out into a sweat all over the body. The eye starts to close and your vision becomes blurred, suddenly you feel a sharp pain behind the eye and on the top of your jaw and at that moment you realise you are no longer asleep and dreaming. You are wide awake and don’t even feel tired. The pain then suddenly shoots over the top of the head following the scar on the left side of the skull. The pain then enters the neck and you realise that you are having a full attack. All this happens in seconds but when the pain starts it feels as though it will last a life time. All you can do is hold the side of your face as you try and move around praying for the pain to stop. It’s so bad all you want to do is scream but hold it in as it is still early hours of the morning.

It’s at this point you make your way into the living room and decide to take your injection and pray to god for it to work and abort the attack but the pain is so strong you feel like nothing on earth could stop it. Ten minuets later and you are still wriggling on the floor wanting to smash your head on the ground in hope that you will crack open the head and release the demon that is inside. The pain continues to shoot over the top of the head and into the neck making you feel as though you have something stuck inside your neck in between the bones. The pain then starts to spread down the left side of the back and under your shoulder blade, So sharp it actually feels like someone has cut open your back with a blade. What seems like hours is in reality only 15 minuets that has passed and then suddenly the pain stops as fast as it started and you breathe a sigh of relief.

No matter how many times i go through the attacks it never seems to get any easier even though you know what to expect. The level of pain is so strong you feel as though you are going to pass out or worst. There are times you feel as though you are on the edge of death and can even sometimes welcome death as it means the pain will be no more. I have had to put up with these attacks for years and they never get any easier. I know what level of pain i will get just by the way the attack starts and there are times where eve the injection has no effect on the attack and you end up having to ride the pain for over an hour. I really wish there was something they can do other than take strong medication all the time that also causes you problems and side effects making you feel even worst than you do when having attacks all the time.

Yet another early morning wake up call to add to the diary and another day of aches and pains to endure. This condition is probably the worst i have ever known or read about and it just seems crazy that there is no cure for it. Slowly they are educating people about the existence of the condition and the effect that it has on the sufferers but i can’t see them coming up with a cure any time soon. not in my life time. It doesn’t help that i have this lump in my back that is obviously pressing on nerves in the back just left to the spine as i can feel it from the bottom of the back right up to the base of the neck. This can also sometimes set off my attacks and make every thing worst as when you try and move about it becomes a sharp stinging pain and even when you take your injection and medication this pain always remains and doesn’t get any easier.

Wake up call from the beast and I’m loosing my memory …..

Another early morning call from the beast resulting in over an hour of non stop agony and pain. No matter how many attacks i get i can never get used to the level of pain that you get when you have an attack. There is nothing on this planet that i know of that i can compare it with as it is so painful it even makes me loose consciousness at times and i end up waking up straight back into the pain and the attack. I know i have actually passed out as when i come around and my vision returns my head throbs violently and makes me feel extremely sick. Thankfully it doesn’t actually make you physically sick as i don’t think i could stand being sick at the same time as being in screaming agony.

The attack takes the same route every time and never changes. It starts behind the left eye and goes over the top of the head on the left side and straight into the neck. When i have an attack and for hours afterwards i can feel a swollen ridge over the top of the head that i can only assume is the nerve when it swells up in pain. You also get a feeling like you have a ball stuck inside you neck at the point where the pain enters and no matter what you do it just doesn’t go until the pain has stopped. The worst part about the attacks is that they come on so quickly with no warning and then disappear just as fast. This is one of the main reasons my original doctor used to say it was just a migraine and i was exaggerating the amount of pain. I would love to take my diagnosis letter and shove it in his gob but unfortunately he was signed off from being a doctor and was put in prison due to him sexually assaulting a female patient. He got what he deserves if you ask me.

It is pointless me putting in another complaint about him as it has been many years now since i had him as a doctor and my case was eventually taken up by the practises owner and his ex-partner and wife. She is a great doctor who really knows her stiff but unfortunately doesn’t have a clue about the condition i suffer but as i am under her for other reasons, including drug addiction where i became addicted to every type of pain killer ever invented, I have to remain with her as a patient. I don’t have any complaints about the treatment i have received off her apart from the fact that she is very busy all the time and getting appointments to see her is very difficult and can end up with you having to wait up to a maximum of 4 weeks until an appointment is available. It’s only a week to go now until i can see her about the lump in my back becoming worst and the other problems i have with my health.

I have done so much research about my condition over the last few years i could fill a DVD disk with all the documents i have accumulated. It wasn’t until i was looking over some of the documents and also my blog entries that i actually realised i am slowly loosing my memory. I can only assume it is down to the condition itself or even the medication i am on but what ever is causing it has me worried. I seem to loose quite a lot of information and can’t remember things i have done the previous month. My long term memory doesn’t seem to be effected yet and my immediate memory seems to be ok but for some reason i keep loosing not days but weeks at a time and can’t remember anything i have done in those periods of time. This is scary as you just never know when you could loose your memory completely. I hope that never happens and that it is just a side effect of a medication that will in time improve but won’t get any worst than it already is.

I am hoping that as soon as they take care of the lump in my back and the problem i have eating and drinking i will be able to start the last medication i was on for my cluster attacks. It was the first medication that i can honestly say i could feel that it was working and almost stopped my attacks completely. It is such a shame that i had to stop the medication due to the other problems i was having as i couldn’t risk more side effects making me worst than i was already. I have left messages for my specialist at neurology and asked that they can make an appointment for me as soon as is possible but i feel he will now wait until i have had the endoscopy and other treatment before they continue trying to get the beast under control and try and get my attacks into remission. Let’s hope i don’t have too much more time to wait and that it will all be taken care of before the end of the year. 

Cluster Headache Awareness Poster 2014

This is the latest poster to be seen flying its way around Facebook and other online media sites to try and help bring awareness to the condition. Thankfully even the TV media companies have started to show information on popular television shows such as THIS MORNING on ITV, the more coverage the more people will understand!

Another attack waking me in the early hours ….

Again i have been woken by an attack from the beast starting my day in agony and pain. Sometimes i wonder what is the point in having an alarm clock when i end up waking up 4 or 5 hours before the alarm is even due. Every time i get woken by the beast a little more of my energy is drained away. I am only managing a couple of hours sleep per night not only due to the attacks but it is also down to the pain in the back that i am getting because of the small lump i have on the lower left of my spine. I am sure the lump is pressing on one or more of the main nerves that goes up the spine into the neck as that is always where the sharp shooting pain seems to go and also effects the rest of the left side of my body. I am getting sharp cramps in my left leg and left arm as well as the skin on the left side of the body feeling like it has been scolded or burnt as it makes it sting like nothing i have ever felt before.

You could say i am used to strong pain due to all the attacks i have had to put up with over the years and can honestly say i know what bad pain feels like and the pain i get in the back is very bad as it is at the same level as my attacks and that is why i believe it is a nerve that is being effected. I could be wrong and it could be something else that is causing it all but it seems strange that when the lower back hurts around the lump the other pains start. At least i only have a week left to wait until i can get to see my own GP and see what she says about the lump. I am still awaiting for the scan that she has referred me for and also the endoscopy the specialist referred me for when i told him about the food and liquid trapping when i try and eat or drink. It will be interesting to see if i am right about the food trapping and the wind and bloating it keeps causing not to mention the indigestion and uncomfortable feeling all the time.

I do feel a little better than i have over the previous weeks and i don’t feel as though i am going to die like i did at the start of the month. Why, when i walked and tried to do anything around the flat, my energy was draining away and making me feel as though i was going to collapse i still have no idea but at least i don’t feel as bad as i did before. I am not getting as many chest pains on the left side and my breathing has been fine. I am bringing up some nasty flem every now and again and when i spit it out into the sink or toilet you can see bits of black and dark green so i am assuming this is down to my smoking so i need to cut down. It is possible i had what is called a silent chest infection as i didn't have any cough or breathing problems yet i am bringing up some nasty stuff off my chest.

I used to smoke cannabis to help with the shadows i used to get due to the CH and have been a smoker for many years. I have now had to give up completely as when i try and smoke anything i end up becoming very ill and the pains increase so it’s just not worth it. I suppose that's one way to give up. I would never have imagined myself in this situation years ago but now i am a CH sufferer and have other health issues on top i have had to make some drastic changes to my lifestyle and i am just praying that the bad luck i have with my health will come to an end and i won’t have any more surprises around the corner.

Depression become out of control…..

Thankfully i was actually feeling a little better yesterday and didn’t drain of energy when i walked around the shop and to the chemist as i was doing. As to what was causing me to become so weak when i tried to walk anywhere is still a mystery but i am thankful that i have started to feel a little better. The back is still having problems and giving me a lot of pain when i move but at least i am not almost passing out. Draining of energy every five minuets is very scary especially when you don’t know what is causing it all the time and also being in pain can sometimes make you feel very weak. I just wish the lump in my back would stop what ever it is doing and ease the pain. It is possible that it is effecting on of the main nerves that effects the entire left side of the body as when i do get the pain it is not just in the back it is also in the left arm and leg. I get cramps in different places and also sharp pain shooting up the back.

The pain in the back that goes all the way up to the neck can sometimes set of my CH and end up giving me several attacks one after another and leaves me in agony for hours. I can’t wait for the hospital to arrange the scan and find out exactly what is causing all the problems. The last time i saw the doctor she referred me for a scan of the lower left back to see what is going on but when i went up to the hospital regarding the chest pain i kept getting and to have blood tests to see if the heart was ok, thankfully it was, they decided to x-ray the lower left back to ensure it is not the bones that have a problem and i was told by the specialist that there was nothing wrong with the bones and to go home and tae pain killers. Not the answer you would expect from a professional but i can understand that it wasn’t an emergency and they didn’t want me taking up a bed in the A & E.

I still think they should have investigated the problem to try and find out what it was that was causing me to wipe out when i tried to walk to the shop and also why my back was in so much pain but they just weren’t interested in my problems and couldn’t wait for me to leave. I am sure it is down to the fact that i am on Methadone as when i told the doctor i was on it you could see her attitude suddenly change and after that point they didn’t want to know. When i tell people they say “They can’t do that they are professionals” but when you see it with your own eyes you can’t believe the attitude they have to someone on the methadone, they immediately think “OH, another druggy after drugs”. If that was the case the hospital would be the last place i would go to try and get drugs.

I suppose it is my own fault as it was down to me for self medicating and getting myself addicted to pain killers, morphine and heroin but when you have a doctor that is telling you the CH attacks are your imagination and end up putting you on drugs that are so strong you start hallucinating and hearing things and end up with you being sectioned for your own safety, you loose all faith in your doctors and end up trying to deal with things yourself. It was then, when under section, the doctors noticed the pain was real and that i was on the wrong medication and in the wrong place so they sent me home and started to get me the real help that i so desperately needed. It then only took another 5 years of investigation before i was finally diagnosed with the condition and given the correct medication to deal with the attacks. In total it was over 10 to 12 years of hell that i had to go through before getting the correct help.

Now i am in a similar situation with a new problem or even a couple of problems. I have a lump on my back at the base just left to the spine that seems to be hitting the nerves and causing me agonising pain. I have something that is causing my food to trap including liquids and causes me instant indigestion and my bowels keep playing up and i have constipation like nothing i have ever experienced before. The constipation is probably down to all the medication i have been on and especially down to pain killers that is why i have stopped taking the strong pain killers as it just makes the constipation even worst so i end up having to ride the pain each day.The only pain killers i will take at the moment is paracetamol or ibuprofen bit the ibuprofen can cause indigestion problems so have been sticking with only the paracetamol and have to watch how many i take as that could also cause problems if i am taking too many or take them for a long period.

I still have another week and half before i can see my own GP and god knows when my next appointment with the specialist will be. I have tried t get hold of the specialist but he is so busy no one seems to be able to pin him down and i have now left 3 messages for him with no luck or contact what so ever. I really need help to get these things sorted so i can start to concentrate on my condition again and get things under control. I haven’t even been able to go out fishing things have been so bad and i have been in so much pain. I don’t go out of my flat and can’t even do my own shopping it is really getting to me now. My depression has become very bad and i find myself battling with unwanted thoughts and feelings on a daily basis and i am afraid that if i don;t get help soon it is only going to get to a point where i no longer have control over my faculties.

Another attack and still in agonising pain ….

After waking yesterday with no attacks and feeling slightly better i thought i was due for a break from the beast but then it happened again this morning in the early hours. 3am the beast attacked with a ferocious attack and pain like no other. The attack started behind my left eye and straight over the tope of the head into my neck. I suddenly burst into sweat like someone had turned the tap on and within seconds my clothes were soaked. My left eye started to close and the lump on the top of the head around my scar become so swollen i had a ridge across the top of my head.

This in turn started the back and neck to hurt like crazy and within minuets the entire left side of my body was in agonising pain and it became so bad that my skin felt as though it had been scolded or acid had be placed on it as it was just stinging so much. All i could do is scream in pain and agony and rush to take my injection praying that it would abort the attack. It took about 10 minuets before it took hold and eased the head as fast as it started. unfortunately it didn’t stop the pain in the back and over the left side of my body, this continued for at least 2 hours before i was able to move again with out pain.

This last month has been a complete night mare with all the attacks and pain i have been getting and still no help has been arranged for me. I am still waiting for the appointment to have the endoscopy to see why my food and liquid gets trapped all the time and why it gives me indigestion as soon as i eat something. I am also still waiting to see my GP about the lump in my back and find out why i haven’t had the appointment to have it scanned to see what is going on.

It doesn’t help having this heat wave at the moment as i feel constantly uncomfortable and sweating all the time/ When i am in pain i then sweat even more making me feel constantly dehydrated and end up having to drink 2lts of water every day. My stomach is still bloating up and i have wind pockets below my chest that sometimes can cause agonising pain as wind hits the different internal organs and constantly makes you feel very uncomfortable. I just wish something would happen soon as i don’t know how much more i can take it is driving me insane.

Attacked by the beast and another day of pain….

Yet another wake up call from the beast in the early hours of the morning. Every morning for the last 2 weeks i have had attacks either brought on by the pain i am getting in my back and neck or just from the CH condition playing up. I have been lucky as i have been able to abort the attacks with the Sumatriptan Injections that were prescribed to me by the Neurologists when i was diagnosed with the condition. If it wasn’t for these injections i would have to ride the attacks for anything up to an hour and half before the pain stops and disappears just as fast as it comes. I can actually tell what it is that is setting off the attacks just by the way the attacks start.

If an attack starts at the front of the head, behind the eye, and over the top into the neck then it is actually my condition playing up but if i get a sore neck just before the attack starts it is the back pain that has set it off and can sometimes make the attacks a lot worst than they normally are. It’s not so bad as long as i only have 2 attacks within 24 hours otherwise i end up having to ride any other attacks that appear and believe me when i say having a bad back at the same time as an attack is probably the most painful thing a human can endure. I have never experienced so much pain in my life until it all flared up this last few weeks.

It was bad enough just having the attacks with out having this lump in the back pressing on different nerves and making me scared to move around. It can get so bad that the skin on the left side of my body not only suffers from pain but also feels as if i have spilt acid or boiling water on it and stings like crazy until the nerve calms down a bit. I don’t know if the lump is actually on a nerve or if it is swelling up and then trapping a nerve, all i do know is that it is so painful i don’t know how much i can take. I still have just under 2 weeks until i see my doctor and am still waiting for the scan referral to see what the lump is and also the endoscopy appointment to see why my food and liquid keeps trapping and gives me instant indigestion.

The last couple of days i have actually been feeling a little better but still find that if i try and do anything strenuous or try walking somewhere, even up and down the stairs to my flat, my energy just disappears really quickly and i find myself out of breath and feeling as though i am going to faint. Even though i have been getting the indigestion and food and liquid trapping when i try and swallow i have still forced myself to eat 3 meals a day and drink lots of water as i seem to be sweating a lot due to the pain and don’t want to end up dehydrated. I have also found, the last 3 days, that i am coughing up some nasty thick flem that is thick green and black that must be coming off my chest. This is probably down to my smoking and i have had to reduce the number of cigarettes i smoke in a day.

I don’t know where or why all these problems come from and why all of a sudden i turned bad but i seem to be slowly improving each day and then when i feel a little better something else comes along. No matter how much i complain and tell my doctor what is happening they just don’t seem to care or want to help me and to be left at home and told to take pain killers is just unbelievable and crazy. If someone came to me with such complaints i would investigate immediately as obviously something is going on. It doesn’t help that i live alone and don’t have anyone in my corner who can say that they have seen me suffering and explain exactly what i am like. I feel like they just don’t believe i have these problems and takes me back to when i first started suffering with CH.

It was years and years i had to suffer before they finally sent me to the correct person to be diagnosed and get the right medication. No matter how much i pleaded and complained i was told i was imagining it all and that the attacks i were getting were all in the head so to speak. It wasn’t until i had an attack in front of one of the doctors that they realised i wasn’t crazy and that the attacks were real. Not only did the attacks become chronic and i had to suffer every day instead of just once or twice a month but it was also too late to take any preventative measures and now they have to try and get the condition into remission by using strong drugs that have been causing ,me so many problems.

Now it seams i am back where i started but with another condition. The lump in the back is effecting the whole of the left side of the body causing pain not only up the left side of the back but in my neck, my left arm and also my left leg. The pains and cramps i am getting are really sharp and takes your breath away when they start. Every night i have to suffer and fight to get sleep as it is so uncomfortable and then when i wake its to start all over again. I fell as though no one cares and they have left me home to suffer and rot. It is also effecting my bi-polar condition as the depression i suffer from has been very bad the last 3 to 4 weeks and i have been having very bad thoughts and feelings. I am lucky that i only suffer mild bi-polar as if i was a bad sufferer i don’t think i would be typing up this blog.

I am praying to god that someone will finally listen to me and get me the help i so drastically need before it becomes too late or i become so ill i end up in hospital or a bed permanently. I know i have to wait for appointments and that every one in the country has to go on a waiting list as it is only fair due to the amount of people who need treatment and i also understand that there are a lot of people who are worst off than i am but surely i shouldn’t be left in so much pain all the time. I can’t even take strong pain killers due to the medication i am on and the pain killers i do take can only be used for 3 days in a row maximum. Due to this i have to go days with no pain relief at all and that is what you call suffering. They wouldn’t let an animal suffer the way i am. I just pray help will come soon!

Wake up call from the Beast & constant agony…

Another early morning start and a wake up call from the beast leaving me in agony once again. Not only do i get the usual attack with agonising pain from behind the left eye and over the top of the head into the neck but i am also getting it through the entire left side of my body. This is due to all the other problems i have going on at the moment and believe me when i say it is scary. When i went to bed last night i had so much pain in the back it was just crazy i have never felt anything like it. At one point it actually felt as though i was loosing all movement in the left side and when i tried to lift my left arm or raise my left leg it was really difficult and took a lot of concentration and energy just to move them slightly.

Thankfully the feeling returned to the left side of the body during the early hours and i managed to get a couple of hours sleep until the beast decided to wake me up with a full on attack resulting in me being awake all night and all morning. It’s bad enough that my energy gets drained when i am trying to do things but when you are also knackered due to the lack of sleep every thing seems to be a lot worst than it actually is. I am just praying all this pain will ease a little soon and that the lump in my back will stop causing me so much trouble but i have my doubts. Until they sort it out i think i am going to be suffering like this for a while. It is just under 2 weeks before i am able to see my doctor again and i really don’t know if i will be able to ride the pain until then.

When i eat or drink i am still getting food trap on the way down and then almost choke me until it finally pops as it then passes through. What is causing all this i don’t know but until i have the endoscopy i won’t be able to sort anything out or get the treatment i so urgently need. It is crazy that the hospital won’t treat you on an emergency basis unless it is a risk to you and could cause death. I really don’t want to end up that bad and would rather they sort it now rather than wait until i become so bad that it will end up an emergency procedure. I would have thought being in agony all the time and not able to move around properly or walk anywhere with out your energy almost making you pass out as it drains so quickly would be enough for them to say it needs to be sorted now. Unfortunately they are so busy at the hospital that you have to go on a waiting list just to have the procedure done and it can take weeks or months before they call you in. I just pray i won;t have to wait that long.

There has been a few times that i have been so scared that i actually thought i was going to die and i have been in so much pain that at times i would have welcomed death. It is crazy that someone should end up feeling this way and is bad enough that i have to contend with the condition CH with out the rest of the problems adding to the stress and worry all the time. I am trying my hardest to keep a positive attitude and stay calm no matter how bad the pain gets but there is a limit to how much a person can take. It doesn’t help that we are having a heat wave at the moment as the hot, humid weather is causing me to feel constantly uncomfortable. Also having constipation because of medication and pain killers makes you feel even worst again and i have had to stop taking the pain killers as you shouldn’t take them for such a long time. The maximum they say is 3 days before addiction takes hold and they expect me to stay on them for 2 weeks suffering like i am…. i don’t think so!

More and More pain every day and still no help!

Yet again i have been woken in the early hours, not by the beast but by the pain in my back and neck actually setting off the beastly attacks. I don’t know how much more of this i can take. Every day is constant agony for me and still we haven’t a clue what is going on and i am still waiting for appointments and procedures. It’s crazy that someone should be left in so much pain and told to take pain killers rather than get the treatment they urgently need. I can understand that it isn’t life or death situation at the moment but i don’t want it to get to that stage.

It’s bad enough feeling like your are about to have a heart attack 3 or 4 times a day and every time you try and go to the shop or do some work around the flat it just drains your energy and wipes you out leaving you strength-less and breathless. No matter how hard i try my energy just disappears so quickly its very scary and worrying. It’s bad enough when you have to contend with a couple of attacks during the day but to have constant pain up the left side of your back and down the left leg and arm. Pain so strong it feels as though all your muscles on the left side is cramping up. The pain down the back is so sharp it feels like someone is cutting your back open with a sharp knife and brings water to your eyes constantly.

Can the body take so much punishment? I just haven’t a clue as to how much pain the human body can take. I know that when i have really bad attacks i can sometimes pass out due to the level of the pain but it is never for more than a few seconds resulting in your head throbbing violently when you wake up again. I am praying that the pain in the back doesn’t become so bad that it starts to make me loose consciousness and i am also praying that the pains i keep getting across my chest on the left side is being caused by the back and the nerve and not something else as i don’t think i could cope with having yet another condition added to my already fast growing list.

Why the doctors and hospital have left me like this i really don’t know but one thing is for sure i will be complaining about the treatment i received at the hospital the last time i was taken in for a blood test to check the heart. To be told to go home and take pain killers is not a professional answer to your problems as taking the kind of pain killers you need to deal with the nerve pain in the back will just make you feel worst and sick all the time. Not only does it make you feel ill but if you take for more than 3 days you can start to build an addiction to the pain killers resulting in your body having to go through withdrawals also. I am really lost as to what to do as it is the last day i can take pain killers today so from tomorrow onwards i have to put up with the pain with no relief at all and i still have 2 weeks to go before i see the doctor again.

Talk about a painful alarm clock ….. OUCH!

Again i have been woken in the early hours by agonising pain but not from the beast as usual, this time its from the lump in the back causing really strong sharp pain right up the left side of my back. It’s not coming from the spine or travelling up the spine it feels more like it is slightly to the side of the spine then swings out to go under my left shoulder blade and then continues into the neck. Not only does it cause my neck to hurt like hell but its also trying to set of my cluster attacks and aggravate my already painful condition.

I still haven’t heard from the doctor about when i am supposed to give blood for the tests or as to what they are going to do about the back. I have an appointment that is still 2 weeks away and that is the earliest i am able to get to see my doctor. It’s no good going to see one of the other doctors in the practice as they don’t really know of my case and what is going on with regards to the different drug experiments to try and tame the beast. All they can do it give pain killers and advise if it gets too much go to A & E, yet A & E won’t do anything either as i have been referred for a scan and they say its now an on going investigation and you have to wait your turn to be scanned.

I do understand that the NHS is very busy and they have waiting lists longer than anyone can really imagine but when your energy is draining away for no reason and they say your heart is fine you would think they would want to investigate as to find out why my energy disappears so quickly. The trouble is it is not a life and death situation so again you have to wait your turn before any investigation is started. Not only do you have to wait time to be seen you also have to wait for any treatment as if it isn’t an emergency they will put you on another list waiting for operations or procedures that will solve the problem. By the time they get around to looking for something it has become a lot worst and could end up causing a life or death situation.

I am just grateful as i am actually feeling a little better today although my energy is still disappearing at an alarming rate i seem to have a little more strength in my legs compared to the last few days. It became so bad at one point i actually thought i was going to die and kept waking up every hour with breathing problems and agonising pain up the back and in the chest. I know they have told me my heart function is fine so there is something else causing the chest pains and i think it is linked to the problem in the back. I actually believe i have to different things happening at the same time. The draining of my energy is down to an ulcer or tear in my gullet or tube that goes into the gullet as when i try and eat or drink i get instant indigestion and pain. After massaging the chest i feel a pop as the food or liquid finally passes through easing the horrible feeling.

The second thing is the pain in the back being caused by the lump. This is what i believe is causing the chest pains and because i have the draining of the energy from the other condition it can fool you thinking you have similar symptoms as an on coming heart attack as due to pain you also burst into a cold sweat and find breathing difficult, like a mild panic attack. I am praying i don’t become any worst over the next couple of weeks while i wait for the doctor as if i do i don’t think i would be able to make it to the surgery. It is possible that the new medication i had from the Neurologists may have set off the ulcer or tear and made it a lot worst as it seems to coincide with when i started the meds and it was because i became suddenly unwell that i had to stop yet another medication that was actually helping to calm the nerve and the beast.

Just being sat at the computer typing up my thoughts into my blog is causing me agonising pain up the back and soreness at the base of the spine. I thought having CH was painful enough, i can honestly say that any pain in the nerve or spine is just as strong as some of my attacks but the CH attack still beats the level of pain it can get to. I am hoping with some rest and relaxation over the weekend it may ease a little and stop causing me so much pain but i think its a bit of wishful thinking. I really just wish the doctors would pull their bloody fingers out and sort something out before it becomes unbearable and its close to that stage already.

Collapsing when i try and walk or do anything…

Yet again i have been woken by the beast at 4am this morning. Not only the beast but also my neck as i woke and moved my head my neck cracked violently about 4 or 5 times sending a massive jolt through my whole body. It’s crazy how the neck seems to control almost everything in the body, if you have a problem in the neck you feel it in almost ever other joint. Not only am i suffering from the beasts attacks i am also suffering from what ever is causing my food and drink to trap in my chest all the time.

I was sent to the hospital for blood tests and they were more than useless sending me home and telling me to take my pain killers leaving me in a state and in pain. I am feeling so weak its unreal and scary i actually feel as though death is knocking on my door and could come at any time. I am getting breathing problems and i can hardly eat or drink. I rang the doctor yesterday and all she was interested in is what they did at the hospital and said she will arrange for me to have a full bloods work up and test to see if there is something else going on. Yet she didn’t give me an appointment or tell me when i am supposed to give bloods.

I am starting to believe i have an ulcer or tear and that is causing all the problems when i try and eat or drink. It also explains why when the neurologists prescribe me new medication i am suddenly becoming ill all the time. It is probably the medication setting off the ulcer or making what ever damage i have even worst. I am praying to god they will find something soon or come to my aid and help me as i feel as though i have been left home to rot and die. I have never felt so ill. I thought being diagnosed with the condition CH was bad enough and to be told there is no cure for it was a kick in the head. Then to go through all the different medications and have bad side effects was really getting me down. No matter how hard i try to make the doctors listen they just don’t want to know.

It is all down to me becoming addicted to pain killers, morphine and heroin. This is when i didn’t know what was happening to me and all i wanted was pain relief all the time. As i became a “drug addict”, in their eyes i am sure they believe that everything i say is just to get more drugs off them but the truth of the matter is i don’t want any more drugs or pain killers as all it does it make me ill. I want the problem sorted not hidden by stupid strong pain killers it just doesn’t make sense. As i was put on methadone to help get off all the drugs years ago i have been on the same dose for a while and they are scared to reduce me off it as it is acting as pain relief and could make my attacks worst. Well i told the doctor the last time i saw her that i want off the crap as i can’t put up with the stigma that comes with it all the time. It’s because i am on the methadone i believe i am not getting the treatment that i urgently need.

When i first met the neurologists and my specialist i thought i had been given a new chance of life and they would eventually sort things out but i am slowly starting to believe that the hospital itself is useless as all they care about is if its life or death emergencies. No body seems to want to help me. When i was there having the blood tests and explained the lack of strength draining me when i walk short distances or try and do anything they asked me what else was going on. When i explained about the food trapping and liquid all they said was they can’t help me with that as its an on going investigation and i am still in the cue for an endoscopy to try and find out what is going wrong. OK i can understand that and agree with them that if it isn’t a emergency then i shouldn’t have to take up a bed but when someone cant even walk down the stairs with out collapsing this to me is an emergency and is not right that i have been left in this state. If anything happens to me i have instructed my mother to sue them. I am already trying to make a complaint about the treatment i have received but every time i try and talk to someone they fob me off and tell me that the person i need to speak to isn't available. I just don’t know what else i can do.

I am praying to god that i start to feel a little better if i get plenty of rest but i have found myself waking up every couple of hours with pains in my chest and my heart thumping so hard it feels like it is coming out of my chest. There is definitely something wrong with my body but what it is i haven’t got a clue i can only guess as i am not qualified to diagnose myself. All i know is that i know my own body and i can feel there is something drastically wrong. Not only do i become weak but also break out in sweats and find it hard even to go to the toilet. Its really getting to me and i feel i have no where to turn to. What’s going to happen next? God only knows…

Hospital was a waste of time …I'm in agony!!!!

Yet again i have been neglecting my daily blog due top health issues. It has just been too painful to sit at the computer and type up my notes due to a lump that is in mu back causing me agonising pain right up the left side of my back into my neck. This in turn has been setting off head attacks and i have been in a right state. I managed to get to the doctors yesterday and explained to 2 different things i had that was making me feel very unwell. The first being the back and lump and the second thing is when i try and eat or drink it gets trapped on the way down almost chocking me and then pops as it goes through. This then causes me either instant indigestion or chest pains and my energy is draining so fast i can’t even walk to a shop that is only 2 minuets away from my flat.

After seeing the doctor and getting some tramadol pain killers for the back she decided to send me to hospital just to have the chest pain checked to make sure it isn’t the heart. I am happy to report that it isn't the heart as they say my heart is fine. I explained every thing that is going on and they decided to x-ray my back as well. Then a doctor came around with a specialist felt my back and because the pain is not on the spine it is to the left of the spine he said its not your bones and you don’t need to be in hospital so go home and take the pain killers you have been subscribed. Your heart is fine so we will write a letter to your doctor and off you go.

You could say i am a little more than upset at the moment as i feel no body want to help me and i am really suffering badly. I can’t even get to the shop and do general shopping, not that i can eat much any way, and feel i have been left to rot in my flat. The cheek of the hospital to say there isn’t anything wrong when there is a definite lump in the back and its touching the nerves causing me agonising pain. All because they only have a certain amount of beds and would rather treat people as out patients than be there in the hospital. Even if i wanted to complain i just don’t know how to go about it or even who to speak to. I am so upset i have tears streaming down my face whilst i am actually typing my blog in pain.

The back also sets off my cluster attacks and is aggravating my condition. The constant indigestion is doing me in and making me feel constantly ill and uncomfortable i just don’t know what to do about it and how i can make myself well again. All i can do is sit in agony and pray that someone will take notice of what is going on and offer me some help but i doubt that is going to happen. I haven’t felt this low in years. My depression has started to take over and i am getting uncontrollable thoughts again so it is really stressing me and worrying me. God Please help me……..

Good news didn’t last long and i became really unwell….

I haven’t been updating my blog lately , not because of laziness, but due to me having a strange turn in my health and a change in what the new medication was doing to me. I was so pleased at the beginning as during the first week of taking the Sodium Valproate my attacks seemed to stop all together and i was so happy and the only side effects i was getting was some violent nightmares causing me to wake up all in a fluster and a sweat. A lot better than waking up in agony at 4am in the morning i can tell you. Unfortunately the good news didn’t last as when i returned from the hospital, after giving my report as to what was going on and asking them not to increase the dose until the nightmares stop, the very next day i suddenly became very unwell.

I was getting constant cramps in my calf muscles in the legs and could hardly walk or move around and when i did try and walk any distance i was suddenly being drained of all my strength and my chest became tight and i started to get chest pains. This continued and got worst for 2 days until i spoke with my chemist and he checked on the computer and told me it was a side effect of the new drug i was taking. I then decided to reduce the dose to one tablet a day, instead of two, and then stopped it all together. It has now been 3 days since i stopped the medication and the cramps in the calf muscles has eased and gone away and i don’t get so drained when i try and do anything.

I still struggle if i have to walk o the shop that is only 2 minuets away from my flat and it seems to wipe me out even climbing the stairs to my front door but i feel a lot better than i was. I made an appointment with my doctor so i could report what was going on and asked her advice and she said the same thing i was thinking, “surely i can’t be intolerant to all the different medications?”. We both think that there is something else going on and that it is linked to the trouble i have when eating and drinking. Every day i get liquid or food trapped when i try and swallow and it takes ages for it to go through and drop into the stomach. At times i have to bang my chest and massage it to help the food or drink pass and due to this problem we are waiting for an Endoscopy to try and find out what is causing it. This could be what is causing me to have strange reactions to any new medication introduced to the body but until i have the check up and the scope down the throat we won’t know for sure.

Also during the last 3 weeks i have had a lump appear on the left side of my spine where all the pain i was getting from my lower back started from. I showed the doctor and she managed to find it straight away and has now referred me for another scan to try and find out what it is. It could be a fatty cyst or lump that could be pressing on the nerve in my back every now and again explaining why i get the sharp shooting pains up the back into my neck. My luck with my health the last few years has been really bad and i just wish something would cut me a break. I have been in so much pain all the time is is horrible and trying to move around is just agony. I haven’t even managed to get out and go Carp fishing witch i love so much and its starting to drive me mad.

I am hoping over the next couple of weeks they will get to the bottom of all these problems and side effects i keep getting and try and explain to me what is going on> I know i have the condition CH and that there is no cure for the condition and i can accept that and i understand that i will be on medication for the remainder of my life. All i ask is to be made comfortable so i can go fishing at least and that way get out of the flat that i am stuck in all the time. I have prayed to god that something or someone somewhere will know what's happening to me and will be able to make me comfortable again instead of constant pain and agony all the time. I feel like they just don’t care and have left me to rot in my flat. My specialist is the only one that is trying to help but even he doesn’t have all the answers as he is a Neurologist and doesn’t deal with the rest of the body. I really don’t know what to do anymore and feel so low at the moment i am scared, scared of myself as i know how depressed i can become and suicidal is one thing i don’t want to ever feel again. God Please help me!

Early days with the new meds but looking good!

Another bit of good news to report for a change instead of always doom gloom and pain and agony. These new tablets i am on, Sodium Valproate, seems to be working so far. I know its very early days and i am on a low dose but i have noticed a huge decrease in the amount of attacks i get and also i can feel something actually stop attacks as they try and start. Most of the attacks i am getting just of late are from the lower back, spine and neck. It seems what ever problem i have is aggravating my attacks as i suspected for some time now but nothing has shown up in any tests. As you can imagine i have been pulling my hair out trying to explain what happens to me and the pain and agony i get in the back and the difficulties in walking but every time i go and see my GP its on a day where i am able to see her and usually when its not so bad.

Finally something has shown up after all this time, a small ball like lump on the left side of my spine in the lower back and when i get the pain and attacks this is what is causing them to be so bad and crippling my back all the time. I know its not good celebrating finding a lump in your back but finally there is something for them to say there is the problem and start investigating and getting to the bottom of it all. Maybe finally they will get the answers they have been looking for with all the tests they have been putting me through just lately and all the bloods they keep taking from me. Don’t get e wrong i am not complaining about it as i think its great they are checking everything and making sure the don’t miss anything.

The treatment i have had from the hospital has been great and my specialist really knows his stuff when it comes to my condition. In that respect i have been very lucky as this condition is so rare that there is very little treatment for it and no cure so to find one of only 2 specialists in the UK that know how to treat CH correctly was a god send. Its typical though, the day i go up for my check up last week and the chance to show him the lump that has built up and get him to refer me to the correct doctor he turned out to be off that week so i now have to fly to my doctors and try and bring her up to date on all the treatment and problems i have been having for the last few months.

This should be fun as she doesn’t know anything about CH and the cause or treatment of the condition but she is good when it comes to following the instructions of the specialist ad that's why i have stayed with her. Also she understands about my bi-polar and makes sure that all my routines are kept and not changed so i don’t loose my mind and start worrying about things. Unfortunately the earliest appointment i could get is next Tuesday 8th July at 9.50 am. Its not long to wait so i am sure with the help of some ibuprofen and if i take it easy i can hold out until i see her.

I wanted to go fishing tomorrow but it has now changed again as the weather forecast say its going to rain most of Friday and the weekend but turn out sunny all next week. If i can get the referral sorted and pain relief by the start of the week i see no reason not to get out and do some fishing during next weeks sunny period. For my birthday i ended up treating myself to some new tackle and can’t wait to go out and give it a try. Also my brother bought me a new fishing rod for Christmas so i can get out and give it its first try out. Fingers crossed the weather forecast holds out.