Everything is becoming too much to handle ….

Again i have been suffering from early morning wake up calls from the beast at 3 am or 4am. You would think as the cold is the main trigger for my attacks that when the weather starts to warm up the attacks will reduce and stop. This isn't the case unfortunately as even the smallest drop in temperature in the early hours seems to aggravate my head and cause attacks to appear. It doesn’t help that i am still suffering some strange symptoms that are very similar to an allergic reaction and also a bad case of Thrush in the mouth and on the tongue. The doctor had given me medication that i had to swill around the mouth and then swallow to help get rid of it but the first dose didn't work and i was still just as bad a week later. Then i had a second dose of the medication that almost got rid of it completely but when i stopped taking the medication because i ran out within 2 days it was back again.

This time the doctor has prescribed me some strong tablets that is supposed to get rid of any type of fungal infection and said that this should stop the problem. Through research about my hiatus hernia i found out that i can now get fungal infections with great ease due to an imbalance that the hernia causes. It also says i can suddenly get allergies also which would explain all the strange symptoms i have been having. We still can’t work out what is causing these symptoms and why i feel like it is getting worst each week that passes. I also have severe pain in the neck on either side and this has now spread down my back on the right side and into the shoulder on the right both in the back and front and is so uncomfortable and painful its crazy.

It has now been 5 weeks since all this has started and i am no closer to a solution. I have tried everything i can think of. I have stopped dairy products and wheat products and even changes washing powders just in case something was causing the symptoms of an allergy. Also as my neighbour has cats and i had a couple of flea bites on my ankles i decided to fumigate the entire flat with a flea bomb to ensure that there could be nothing that was biting me causing the allergy.  After i bombed the flat i did start to feel a bit better but at the same time i stopped taking paracetamol tablets so it could be just a coincidence or maybe the paracetamol was also causing problems, i just don’t know. After a few more days i started to get ill again and for sure it can’t be the bites or fleas as the fumigation will kill anything that comes into contact with my carpet or furniture for the next 7 months to ensure i don't get any more bites.

As well as getting the symptoms come back my bowels have also decided to stop working so yet again i have to take more laxatives to get things moving again but i am sure its what ever is causing these symptoms that is also causing my bowls to suddenly stop working. Every time i see a doctor and tell them of the problems they just chuck more laxatives and medication at me and its really driving me insane. Why can’t they investigate it properly and stop all this messing about. Why someone should be in such a state and in so much pain in this day and age is beyond me. You would think with all the modern technology and medication they could do a lot better instead of leaving me to suffer all the time. Its bad enough suffering from the cluster attacks each day let alone all these other things going on. My back is in constant pain, my neck is in constant pain, my shoulder is in constant pain and my attacks are still everyday, although a massive improvement to what they were as i don't have as many attacks as i used to.

Due to the hernia i now have to sleep with my bed up at a strange angle and at first i thought the neck could be linked to that but now i have a new bed that has the base up at an angle so the mattress is still flat and doesn’t give me a crick in the neck so it can’t be that causing the neck pains. When i try and sleep on my back i get severe pain all night in both kidneys and also upper back and have to lay on my right side in order to sleep. If i try and sleep on my left side it ends up setting of cluster attacks so i am only able to sleep in one position all night. This is all starting to get too much for me to handle and i am struggling with the depression on a daily basis now. Its bad enough that i don’t get out of my flat as much as i used to due to the cluster attacks but at the moment i haven’t even managed to get out and go fishing yet. My local lake is closed at the moment so i can’t go there and the others are all too far for me to take my gear as i can’t lift as much as i used to not only because of the hernia but also due to the pain in the neck , kidneys and neck. I just wish god would cut me a break……..

Who needs an alarm clock when you suffer CH

Once again i am being woken up during the early hours by a visit from the beast. At around 3am or sometimes at 4 my eyes open and i am wide awake. Its feels strange as normally when you wake up you still feel tired and it takes a while for you to come around and wake up properly. When the attacks come its a different story. You are totally awake wondering if you been asleep at all and its not until you notice the time you realise what is about to happen. Your body breaks out in sweats and the pressure on the side of the head builds and the pain begins. Starting from the top of the jaw behind the eye and shooting over the top of the head on the left side and then into the neck at the back of your head. The pain shoots over so fast you don’t even get a chance to prepare your self and within seconds you are in total agony.

The left eye starts to close and water pours down your cheek and all you can do is hold your head in your hands praying for the pain to go away. The entire left side of the face starts to feel like its being melted away and stings with seriously high amount of pain. You rub the side of your face but every movement and every touch causes even more pain so you don’t know what to do. If you manage to get your injection in time then the pain will only last for around 10 minuets but those minuets seem like a life time. If you don’t take the injection in time then you have to ride the attack for well over an hour and by the end of it you are praying to god wishing for death to come and finally put you out of your misery. No matter how many attacks you have and how well you seem to deal with them you never get used to the level of pain i brings.Each attack seems to be stronger and more painful than before.

It doesn’t help the fact that i am still getting strange symptoms like i am allergic to something and that my bowels have decided to give up on me and i now have to take a crazy amount of laxatives just to be able to go to the toilet. I am getting really bad pain in both sides of my neck and this can also set off attacks during the day. At first i thought the pain was from me having to sleep at a strange angle due to having a hiatus hernia but now i have reset the bed and shouldn’t be getting any problems yet it seems to be getting worst each day. My stomach is swelling up every day and people say i am starting to look fat even though i am only eating 2 small meals a day. I am producing wind at a crazy rate and it seems to travel around my insides causing me sharp pain and discomfort. My throat is getting sore every day and as i am a smoker i find i can’t even smoke due to the soreness. In one way that's good for me as i am having to cut down but there must be a reason for all this going on.

Its driving me insane as when i see the doctors they end up giving me more laxatives. more antihistamines and more pain killers instead of trying to find out what is going on. I asked for a colonoscopy referral and was told that i had to be like this for at least six months on maximum laxatives before they will even think about referring me. Surely someone shouldn’t have to suffer or go through so much in this day and age. I thought medicine and medical practice had taken steps forwards not backwards. I feel as though i am being brushed under the carpet and left to rot. Every day i now have to fight back the depression and i am finding it harder and harder each time. I really don’t know how much more of this i can take, i just wish someone would help me.

How much more can the body and the mind take..

The last couple of weeks has been hell on earth. I thought suffering from the cluster attacks was bad enough but for some reason i am also getting what i can only describe as a severe allergic reaction to something that i can’t work out. Sore eyes, nettle rash on the skin, hot sweats and really bad pain in the neck on either side are the symptoms of something that is really screwing up my body. My bowels don’t work anymore with out the use of a lot of laxatives and even when i try and urinate it takes a lot of strain to empty my bladder. This just isn’t right. I have stopped dairy products and even wheat just in case it was something i was eating. I have also stopped coffee and tea and only drink water in case it was something i was drinking. Some days i feel as though i am starting to get better then all of a sudden i start to feel worst for no reason.

The pain in the neck is also setting off my cluster attacks so i am not only dealing with the effects of the allergy but also having to deal with the attacks themselves. I have never been in so much pain and discomfort all at the same time. I have tried everything i can think of that could be causing all this but nothing seems to stand out. I have even changed my washing powder in case it was that and am boil washing my bedding in case it is bed mites or something like that that could be causing the problems. I just don't know what else i can do. I am taking antihistamines to combat the symptoms but it only takes the edge off and i still end up suffering the entire day. I am also taking a lot of laxatives at the moment to keep my bowels moving so i don’t clog up again and end up in even more pain and agony. I even thought it was the laxatives themselves that i am having an allergic reaction to but even though i stopped for a couple of days it didn't make any difference.

All i can do is keep on persisting and hope that i find out the cause of it all soon. Every day i wake up it feels like its getting worst and my neck is becoming more and more painful to the point where i can’t even look over my shoulders now. Each time i go and see a doctor they just say they don't know what is causing it and give me more tablets but it doesn’t help. I feel as if i am being pushed aside and they don’t care what happens to me as i am ill anyway. I will see if things improve today but if they don't i will have to make another appointment and see the doctor again tomorrow and try and demand they do something about this but i know they will do exactly the same thing as before and tell me to wait for tests and give me more tablets to make me feel even worst. All it would take is an allergy test to see what is causing it and i don't understand why they don't do that as they used to do it when i was a child.  Maybe they don’t do those tests anymore, i just don't know.

I really don’t know how much more of this i can take/ Not only do i feel really ill but it is causing my depression to drop really low and i find myself in tears most of the day for no reason feeling sorry for myself all the time. I seem to be getting more aches and pains all over my back and sides worst than i have ever had but no one seems to want to help me and now i feel lost with no where to turn. Its really hard to try and keep a positive mind at the moment and i am trying to keep busy and keep my mind on thins that i enjoy but i can’t even get out and go fishing at the moment as i am just to ill and in too much pain. Please God Help Me!

I refuse to give in to the beast……

Another week full of aches, pain and agony brought on by constant attacks in the early hours. Not only am i suffering from the cluster attacks but also from an hiatus hernia that is causing me so much discomfort its unbelievable. Every morning i wake up full of acid in my throat and this is due to when i sleep flat on the bed. If i raise the bed up at an angle like the hospital recommends i end up with pain in my neck from sleeping at a funny angle and no acid in the throat. No matter what i do i just can’t win. On top of all these problems i am having an allergic reaction again to something that i can’t work out. I have tried stopping different things and nothing seems to ease it and everything seems to aggravate it. Surely i can’t be allergic to everything?

I am getting nettle rash on my arms and face and a sore mouth at the back as if there is something stuck at the back of the throat. I am al;so getting sore lips and really sore eyes and am having to take antihistamines on top of all the other medication i am on. To top all this off i am having murder with my bowels, once again i am unable to go and open my bowels due to extreme constipation. I am having to take 3 different types of laxatives just to get the bowels moving so i am starting to wonder if its the bowels that is poisoning me and causing the allergic reaction type symptoms. All i can do is continue to take the medication and pray to god that it eases off soon. I spoke with my doctor the last time i saw her when i reported all this going on and asked to be referred for a colonoscopy to try and find out what is going on with my bowels as i have now been suffering with the constipation for over 2 years and it seems like its getting worst all the time.

I was informed that i have to be on a maximum dose of laxatives and still unable to open my bowels normally for over six months before the hospital will accept the referral. Surely this is crazy. OK i agree that my bowels are moving with the laxatives but i am still having serious problems. I am getting constant pains in the stomach and bowel area and feel like i just can’t push anything out. It honestly feels like the muscles just isn't working and i cant bare down like i used to be able. The same when i pee, i can’t stand up and go like a man can normally i have to sit and relax until i feel something start to come out and then slowly push but if i push too hard it stops and i can’t go. All i can do for the time being is soldier on and hope it doesn’t get to the point where i do need treatment and end up in hospital.

I am trying my hardest to stay positive and keep saying to myself there are worst people out there than me but sometimes i really think it isn’t going to get any better and things are slowly moving down hill with regards to my health. I am trying to focus on my fishing and for the last couple of months i have been preparing and getting all the equipment and tackle i need to have a busy summer specimen fishing and get out in the fresh air a lot more. I am now waiting for the weather to change so i can go fishing for the first time this season which is hopefully this Monday coming. I don't care if i am still getting these crazy allergy symptoms i am still going to get out as i am fed up wit this illness trying to rule my life and i refuse to give into it. Lets hope i can keep strong and fight as much as possible so i can enjoy my fishing this year.

How much more punishment can the body take..

Yet again i have been neglecting my blog not due to laziness but actually due to illness once again. Both sides of my neck suddenly became painful and i was so run down i couldn’t find any strength to do anything. I also found i had loads of small blisters on the back of my tongue and my mouth was becoming sore. I decided to make an emergency appointment to see the doctor but my normal doctor was unavailable so i had to see the locum. I reported to her what was wrong and with out even examining me she said i had some sort of virus and prescribed antibiotics to me. I think this is crazy using antibiotics as an answer to unknown illnesses, surely she should have done a proper examination.

Well i started the antibiotics on the Monday and by the Friday i was 100 times worst. I was so ill that i was passing out on my feet. I had no strength , i could hardly swallow and i kept burning up every now and again. My neck was so painful on both sides not only did it keep setting off my cluster attacks and was also unable to move my head from side to side. I decided to ring NHS direct who advised me to see the out of hours doctors on Saturday so i went down there and was shocked when they decided to send me to hospital. The doctor that examined me thinks i had one of the worst bouts of Flu she had ever seen and was coming to the end of it but my heart rate was very high and she was worried so made an appointment at the hospital for me.

My mate Brian rushed me to Llandoch Hospital just outside Barry in Wales, and i was taken straight through to the emergency examination ward where they asked me the important questions and gave me a quick examination. I was then rushed down to x-ray for a chest and neck x-ray to make sure something more serious wasn't going on. The doctors were confused and didn't know what was going on. My bloods came back OK and there wasn’t any sign of infection or problems, my x-rays came back clear so they started to do other tests and consulted other doctors to see if they could find out what was wrong. At one point i scared the doctors and nurses half to death as my heart rate raced up to between 150 and 200 bpm and set off every alarm in the ward. I have never seen so many medical staff rush to my bed side and suddenly i was feeling like a pin cushion as they were taking blood and giving injections and putting lines in.

After a few scary hours i started to calm down and my heart rate returned to a steady pace although still fast but that was probably down to the pain i was getting in my neck and the ill feeling i was having. My skin on my forehead and under my eyes felt as though i had sun burn not to mention my eyes were extremely sore. The doctors came to the conclusion that i may have had a nasty virus or an extreme case of the flu but had gotten over it as i was no longer showing any signs of infection and they put the neck pain down to muscle spasms. The soreness in the mouth and the ulcers on the back of the tongue are from thrush, a sign of being run down or recovering from illness and gave me some mouth wash medication to deal with that. They prescribed me 3 days of diazepam to help relax the muscles even though i told them i shouldn't take those sort of drugs but they insisted and said they would write to my doctor to let her know what had gone on.

I am still getting over what ever it was that caused all these things to happen and i still have sore skin and mouth every now and again. My neck is still in pain and i can’t move it as much as usual but its a lot better than it has been for the last couple of weeks. As to what it was that started all this i don't know and the doctors are still investigating but i can tell you one thing for sure, i will make sure i have my flu injection next year instead of missing it like i did this year. It just goes to show how important those injections really are/ As to what else is going on i am clueless and just hope that i continue to get better over the next week as i don't think i could cope going through all that again.  It bad enough having to deal will the cluster attacks every day and all the time but to have other illness on top just drains all of your energy. How much more can my poor body take… only time will tell….!

There’s no rest from the beast…..

Who needs an alarm clock when you suffer from the same condition as i do. CH is one of the worst illnesses i have ever come across and one that there is no cure for and very little is known about the illness. When i was first told there was no cure and only medication to help it go into remission i have to say i was shocked and speechless. I still find it hard to believe that there is nothing they can do and that i will suffer from these attacks for the rest of my life. I am grateful for the medication i have been given and the injections as they are the only things capable of stopping an attack when it appears. When you are being woken up every morning due to the drop in temperature setting off attacks all the time it is very hard to think positively and trying to stay focused on something other than feeling ill all the time is almost impossible.

Over the last couple of weeks i have been getting regular attacks in the early hours especially when the weather drops and the morning starts of frosty and cold. I have also noticed that i am getting a lot of unexplained pain in my neck on both sides. The muscle on either side seems to be aching constantly and due to the pain it keeps setting off attacks during the day. After each attack it seems like the ache and the pain in the neck is getting worst and it has now got to the stage that it is starting to worry me as i can’t move my neck with out it causing me pain. Maybe there is something else that is causing it like a head cold or a chill to the neck but what ever it is is causing me problems so it looks like i have to go back to the doctors once again and ask for help.

The last few years it seems like i have been a regular visitor to the doctor with all sorts of problems appearing in my health. Everything from bowel impaction to a hiatus hernia have all been diagnosed over the last couple of years and it feels like my body is becoming a complete wreck. No matter how much i try and exercise and  keep moving i just can’t seem to shake the problems. It doesn’t help that i am shut away in the flat all the time as i can’t go out due to the cold at the moment and i have to wait for the weather to warm up before i can become active once again. Last year i missed out on a lot of fishing which is the only sport i really enjoy and also my main hobby. Due to me being in pain and having the hernia it made it almost impossible to get out and about. This year i am determined to make up for it and get out in the fresh air as much as is humanly possible or as much as i can afford as fishing doesn’t come cheap.

I have been spending all winter preparing and saving up for fishing tackle that i wanted and now i have everything ready to enjoy this year down at the waters edge catching me some monster fish. I will be able to take my medication with me so if i do have an attack i will be able to sit in my bivvi (fishing tent) and take my injection with out people watching me thrash around in pain. Once the attack is over i can go back to my fishing. This way i should be able to get out a lot more than i did last year. I just wish there was some way i would be able to take my oxygen with me as that helps to reduce the time an attack lasts. They have portable oxygen units but i don’t know where to get one or whether i would be allowed one. I will have to speak with my doctor and specialist to see what i can do.

I have noticed lately that my depression has been getting a little worst and i find my self low and depressed a lot more than normal. I don’t know if i will need new medication or if its just because the attacks have been so regular just lately but again i will have to speak with my doctor to find out what we can do as i find myself in tears most of the time for no reason. I can be sat watching something on TV and all of a sudden i break down and start crying and i can’t think why i would be crying but it just happens. It’s amazing how being ill can take so much out of you and leave you drained of energy all the time especially when you are in pain for most of the day. One thing is for sure i will keep fighting as i refuse to give in to the beast.

The pain is really getting to me…

Every morning this last week the weather has started extremely cold and frosty and due to this my head has been playing up worst than ever before.  I can’t remember the last time i had so many attacks during the early hours. Starting at around 3am it all begins and not just one attack. Several attacks one after each other meaning i am unable to use the injections to abort them and have to ride each attack out. This leaves me in agonising pain and even after the attacks have finished i am left with a very painful neck. When i try and turn my head, even a little, the pain shoots down either side of my neck and into my back making every little movement agony and uncomfortable.

It doesn’t help even if i try and keep my head still as it starts to ache and then it can bring on another attack. I have tried everything i can to avoid an attack building but nothing helps. I take pain killers to try and ease the aches and pain but they just don’t seem to work. I am keeping my flat lovely and warm but even that doesn’t have an effect and the attacks keep on appearing i really don’t know how much more of this i can take. The sweat keeps on pouring off me and although i am warm i end up getting cold shivers. Its really starting to drive me mad.

I have experienced many types of different CH attacks and they have been brought on by so many different things i can’t tell exactly what sets them off apart from the cold is my main trigger. I also think it has something to do with the weather as when there is a low pressure system moving over us the attacks become worst and i always end up in pain. No matter how many attacks i have i just can’t get used to them or seem to control them and i am sure they are getting worst even though i am having less during a 24 hour period. I am praying that as the season begins to warm up the attacks will begin to ease again.

I am also still getting big problems with my bowels and my hiatus hernia seems to be playing up all the time. Its starting to get to the point where i am scared even to take my medication in case it starts to cause me even more problems. Just when i think i have things under control something else comes along and causes everything to play up. I am trying to stay positive at the moment but it is very hard as the depression is really getting me down. If it continues i am going to have to go back to the doctors and ask for more help once again and see what else they can do. No doubt it will end up being more medication and more side effects to contend with, i just feel i am fighting a loosing battle sometimes.