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.