Winters fast approaching, what about the CH?

Well again its been a while since i updated my blog. I managed to get an appointment with the neurologist after just over a year. I can’t believe its been that long since i last saw him and so many things have happened in between appointments it was difficult explaining all the problems. He has confirmed that it isn't the cluster attacks causing the back pain and the stabbing pains on the left side of the body and insists that my doctor refer me and look into this matter, He also agreed that i am having trouble controlling my anxiety from the bi-polar side of me and i need to rake action and i will find that a lot of the pains and aches and weaknesses start to go away. He wants me to see my doctor as soon as possible and he will see me again in six months hoping that my attacks don't return to how bad they were a year from now.

I understand with cluster attacks that you go through cycles but most people had them for a period and then they stop and return months or years later. Being chronic it just decreases the amount of attacks you have in a month and you go through low and high periods depending on your health. So far i am at my lowest i have been in 2 years but i touch wood as i say that as the weather has been making the head play up and i have had to deal with a few attacks the last few days. I do get very anxious at the time of my attacks knowing that the pain is going t o start and its no wonder after having so many attacks but i agree i need to do something about the anxiety and try and stay calm and chilled instead of worry about every thing all the time. I know its down to not being able to get out fishing lately as its driving me crazy so i have to plan a trip soon and no matter how much pain i am, in i will still go and try and relax as that's when i find i am at my best when on the bank trying to catch large fish.

I am about to go take a look at a new fishing syndicate known as the Birch Syndicate , its not actually new as its been around for a few years but the waters are new to me and a challenge that i an really looking forwards to. It a very large lake full of carp from high doubles up to 40lb + so i cant wait to start fishing it next season. I could start during the winter but i know the cold weather would probably start playing havoc with my head and end up setting off attacks so i don't want to risk aggravating it for no reason. I am happy with the amount of attacks i am having to deal with at the moment and although i still find myself locked away all the time i am slowly starting to get out a couple of times a week and if i can get back into my fishing this will change to weeks at a time. There is no better medication than being out in the fresh air and getting the vitamins and sun on then body.

I have an appointment with my doctor on Monday to update her with what the neurologist said. I don't think she is going to be very happy when i tell her what he said but its not really her fault that they haven't investigated the pain in my back and neck as it could have been coming from the head and as we couldn’t get hold of the neurologist for over a year meant i have had to suffer and put up with the pain. At least we are starting to make improvements and slowly getting there. I also have the mental heath team support group contacting me on Friday 18th December to discus what extra support i need and help they are able to offer me as i am suffering from the bad anxiety.

The neurologist wants me on Amertriperlyn Tablets to see if it helps ease the remaining attacks i am having at the moment and he is also referring me to another headache specialist as some of the attacks are actual headaches caused and aggravated by the pain in the neck so having a couple of triggers all the time isn't good so we are going to see if there are anything else we can try to get them under control. Well this is my last blog update until after Christmas and the New Year so i would like to wish everyone that reads my blog a great Christmas and a Pain free New yea and hope you all achieve your goals in the new year coming.

Being alone outdoors is different to being alone indoors…

Just when i think things are getting better and my attacks are at the lowest they have been in years i end up getting rushed into hospital with severe chest pains and threat of angina only to be cleared to find out it could be some kind of infection but i have to wait as the normal bloods didn't show up anything yet i am having symptoms of an infection. Cold sweats on and off all day soaking me, sore eyes , pains in the muscles, thrush at the back of the tongue showing the body is fighting something. The have sent bloods to the serious infections unit at the hospital of wales and i have to wait on results . I don't like the sound of that but they could be clear. The doctors say if they come back clear then i am to be referred for a colonoscopy to find out why the bowels are having so many problems and hopefully find out what's going on.

They also agreed that being type 2 bipolar doesn't help as i tend to suffer high anxiety which will make my symptoms feel and be twice as bad as normal so i have to be careful and watch my stress levels until they can find out what is happening. I am booked back in to see the neurologist on the 7th of December so its not long to wait and i am booked back in to the doctors on Thursday to see if there's anything they can do the relieve the symptoms. Being rushed in Saturday morning with the chest pains really shook me up and scared me. It just seems like i have had so much bad luck with medication its crazy. Reactions to so many different drugs is just not normal and i believe its down to the hiatus hernia. It seems ever since that started things have become slowly worst and my health is very low.

I am doing as much as i can to feel normal and live a normal life but when you are in pain all the time it becomes hard. I try to eat normally but struggle to have 2 meals a day as it keeps trapping as i swallow and almost chokes me and i end up having to massage my chest to help it pass through. When i wake in the mornings i can sometimes find a mouthful of acid greets me and end up running into the bathroom spitting before it makes me sick and have to use Gaviscon to ease it. Then there is the daily cluster attacks which are low thank god as i don't think i could cope with a full bout of attacks and feel this ill at the same time. I still have to deal with a few though and its hard. My body feels run down it needs a holiday. I usually go fishing now days to chill out but when you are in pain and the weather is cold it makes it 100 times worst and there is no way i could do it at the moment. maybe if the back pains would ease a little then i could go and that would do me the world of good.

I find when i am out fishing in the fresh air my body always feels stronger for it. Even though you work hard sometimes to catch those elusive carp, when you return home having captured a couple and released them back into the lake to fight another day, you feel revived and full of energy and that's one of the reasons i love fishing so much. Being on your own with your own thoughts out in the wilderness or at the side of a park lake is so different to being locked away on your own in your home. You have nature as a companion and feel so at ease its great. OK fishing can sometimes be a bit stressful when the fish aren't biting but that's the fun of the sport. Can’t wait for my next trip!

There is light at the end of the tunnel, I can see it!

Once again i have been lazy not updating my blog as regular as i would like. It’s not because of the attacks so much but more down to the fact of the pain in my back when i sit at the computer to type. The last month has been a very strange one as i have finally stopped suffering allergic reactions to god knows what medication and actually started to feel well for a short period and then all of a sudden the back pains have started and haven't stopped since. I am happy to report that my attacks are at their lowest they have been in years and i am managing to control them happily for the time being.

Why all the pain has suddenly started in my back i can only assume it is from the aftermath of the attacks. being a chronic sufferer and having to deal with several attacks per day must do some sort of damage to the body after a period of time. The nerve down my left side is very tender and i can feel a line right down the left of my back. When i am sat in one position for several minuets the bottom of my back right at the tail begins to hurt and then start pain radiating outwards towards both sides of my lower back. This is a very annoying and uncomfortable pain but when i move a bit and start stretching it tends to ease off and go away but then i get secondary pain higher up the back behind the left shoulder blade.

I rushed to the doctors the other day as every time i took a breath i was getting a stabbing pain in the left shoulder blade on the back. The doctor feels it is the group of muscles on the left side of my back going into spasms. Now its funny he should say that as when i was rushed into hospital the last time they said i was getting muscle spams in my neck that was also causing me major problems and also setting off attacks. Its strange how the 2 different doctors have come up with the same results. I can only think that the muscle problems i now have in the left of my back have been caused by having so many cluster attacks every month.

I was supposed to see my specialist at the start of the year and it has taken until now to get an appointment with him. As he is the head Neurologist at one of the biggest teaching hospitals in South Wales he is very hard to get hold of and even harder to book appointment with but finally i have a date. A letter came through the other day asking me to ring and book the appointment and thankfully they have given me the 7th of December so its not long now till i am able to update him with everything that has gone on with me over the last year. I have had so many different problems all caused either by the after effects of the attacks or by side effects of medication.

Also the problems i am now getting with the hiatus hernia, also caused from the side effects of medication, are really getting to me and i am finding i can’t eat as much as i used to and i find i am chocking on my food on a regular basis. Not to mentions the amount of trouble i have sleeping due to wheezing and acid build up in the chest if i lay flat and the back pain if i lay sat up. Sometimes i wonder how on earth i am still alive and kicking but i promised myself i would fight this illness with every breath i have and i wouldn’t give into it even though sometimes i can honestly say i have prayed for the end to come.

Whilst i am having a down period from my attacks i am slowly able to catch up with house work and other things i have been putting off for months due to the pain and agony all the time. Slowly i am gathering some sort of quality of life again and starting to think i will be able to get this under control but i cant go through any more allergic reactions to medication as i think the next time may end up being the last. I just hope my neurologist is able to come up with some ideas and other ways in which i can get these attacks controlled once and for all.

Strange Weather causing Constant Attacks…

when i was told i was a chronic sufferer and would have to continue to put up with daily attacks and with the help of medication i would be able to control them. So far i have been unsuccessful at finding the right medication for me as everything seems to make me very ill and the kind of medication required to control these attacks is extremely strong. So far the only things i can take are the injections and regular pain killers sometimes boosted with Pregabilin but even that causes me wind and bowel problems. My health has been on and downwards spiral ever since the first allergic reaction to the first medication. Now i am waiting to see my specialist but its coming up to 8 months since i saw him last and i need him to give me help through the rough times especially with this insane weather we have now and again.

One minuet the weather wants to be sunny and hot then suddenly its pouring and cold and then sudden changes back. I call this weather yoyo weather it plays hell with my head. Something to do with the high and low pressure changes and electrical charges in the air at this time seems to trigger my attacks. The worst time is when they come at 3 am in the morning and you wake up not even feeling tired to instant pain. I get days where i am scared to even sleep as i know i am going to wake up and face hell in the morning. I end up having naps through the day so i don't sleep so much during the early hours but all this does is tire me out and make me feel weak after doing it for weeks.

I then change my sleeping pattern to try and be awake during the early hours and sleep during the early day. If i could get into that habit it would be brilliant for carp fishing but for some reason my body doesn't let me. After a while it just gives in and i sleep until the next attack and the cycle begins again. I have more pains and aches in my body now days i feel like i have played a rugby match each morning i wake up its that bad. The attacks have taken their toll on the body and its paying the price. the left side of my back i get constant pain up in  a line and behind my shoulder all the time and this is from the actual attacks as it links to the neck and the nerve itself. The pains in the lower back come from a small lump i have at the side of my spine they say is a fatty lump and nothing can be done about it but i don't believe that. Surely they can get rid of it some how.

I get a lot of chest pains and aches in the muscles in the chest from my hernia and the amount of time i choke on drinking liquid or trying to eat is crazy but i manage. I have to keep taking Omeprazole as i get terrible acid otherwise and have even tried to stop taking them for 2 weeks to have tests done and couldn't manage 4 days. My attacks have just started to reduce thank god and touch wood , but that wont last i just know it. I have just got a memory foam layer to put on  my mattress to help with the back pains to see if its anything to do with my sleeping why they are playing up so bad. I hope it eases off soon or i am going to have to go see the doctor early again. I am even having trouble walking to the shop back and forth as the pain in the back always ends up worst and sets off my head attack when the pain reaches the neck. I am hoping to book another fishing trip again soon as my last one was cut short due to idiots setting fires around the lake. Fingers crossed it will be soon!

Understanding the Beast

By Martyn Russ

Over the last 14 Years i have had more attacks that anyone could possible imagine, 8 Times a day I would have to fight the beast for longer than an hour each time. Every time you fight the pain gets stronger. They say amputation with out anaesthetic is a close to describing the pain but i say they are way off!, its 1000s of times worst. The closes way of explaining is imagine all your toothaches and abscesses you have in your entire life all happen at once and not just for a while oh no 10 years on and off each day. And that strong nerve pain doesn't stay in the tooth area oh no!, It runs behind your eye then over the top of your head and into the back of you neck so making the whole left side of the face feel that same pain as the nerve of the tooth, Sharp, Pulsing, Agonising “PAIN”  Then comes the Battle with Depression Every Day saying it will End and trying to convince yourself there's an end in sight when in reality you know you are just waiting for the next. Scared to go outside in fear of the next attack, ashamed of people seeing you in this way wanting to help and only do good but there's nothing that can be done and it makes it worst with the attention it brings to you. You take all the medication you are told to and even out up with the side effects that make you ill just to try and live a normal day with no pain. Your health goes down hill rapidly as you are on strong medication all the time and aches and pains that wouldn't bother you start to become a problem. You find yourself having difficulty just walking to the shop or doing the cleaning. You slowly loose you self independence and sometimes wonder what's it all for. Its then at my lowest when i think is it really worth all this pain and agony and there s a little voice inside my head says “Yes, Martyn”,” Your worth more than this, this isn't the end its just a change at half time” I Can learn to live with the condition providing i have my 2 injections per day as that's seems to b working, i know there no cure but they can help in ways i just have to be strong and fight the best all the way to the end, i could even beat it!

Relying on your Injections to live a normal life, i understand now….

I know i have had a lot of attacks just lately and it started getting worst a couple of months ago when i was having the allergic reactions all the time. I ended up having to go into the doctors twice for a prescription for more injections as i was only on half dose and didn't want to cost the system too much money with me not using them and stockpiling (i wish i had). After having 2 bad months and having to increase my dose i told my doctor to put them back up to 56 a month (2 a day) ready for the winter as i have been bad lately. She did this and i thought everything was sorted.

I go into my local chemist who takes care of all my medication and all my repeats so i don't have to worry about them or miss medication. They also help to watch what i am tacking and even dose out the injections weekly so i can have 2 per day per week and don't get tempted into taking more that i should.  They watch all my medication closely and even notice when something is wrong with me so i have stayed with this chemist from the beginning. As i approached the counter the woman said ” Martyn; is there a reason why they would stop your injections”; “Certainly Not” i said d “Well there are NONE on your script for the month.” . I contacted the doctors to find out my doctor is on leave and somehow a mistake had been mistaken so they would do a script for 28. Me thinking they meant 28 boxes , 56 injections i said “OK”m i went to collect them. I was horrified when i saw the script.

I Rang the doctors back and was basically told there was nothing i can do and my doctor is away on leave and i would have to wait until she came back.  I am fed up with these excuses all the time something goes wrong with my medication if it not the injections if its the laxatives, or something else missing fro the script, I ended up ringing through at lunch time and spoke with the doctor in person and when i explained the problem he agreed to write a prescription for 56 injections and it will be waiting there the next day for me. Now why couldn't they just do that in the first place.

This last week has been really stressful and a lot of things have been going wrong. My PC broke but managed to fix it and now am running Windows 10 witch isn't that bad really when you get used to it. Tried to order a screen for my mobile as i smashed it and its going to take 2 weeks to come and that's annoying as its like looking at a cracked mirror all the time even though it still works. The weather is looking good this weekend so i might get out and do a bit of fishing and see if can get a bit of fresh air. My mate Brian has agreed to drop me down and pick me up he may even join me yet depends how busy he is. Lets hope the weather holds and so does the health. Fingers Crossed

More Up’s and Down’s Than a Yoyo !

Every time i think i am starting to get better and the attacks reduce and the allergies and side effects of the medication start to ease and stop  along comes a weather front to kick off the attacks all over again. Why the weather seems to have so much of an active roll in why my attacks set off is beyond me understanding but i can only assume its when we get low pressure changing to high or high changing to low. You mustn’t forget that cold is also a major factor of my attacks as even though the weather is still warm, all it takes is a cold breeze to blow constantly in my left eye for a period of time and it set’s off my attacks. When winter comes i literally become a hermit and hide away from the out doors due to this problem

This hiding away has become a big problem over the last 2 years as i no longer have a social life and only a few real true friends that visit me other than family. As i tend not to go out anymore it seems like everyone has drifted away. My good friends take time out to come round and see how i am doing  even if it is only once a week it gives me that incentive to try and fight the beast and get out and about a bit more. I have really struggled the last 2 years to even get out and do some fishing my health has been so up and down like a yoyo its crazy. I have managed a few trips and find i feel so much better for a while afterwards due to being out in the fresh air for a long period really does help.

Well at the moment i am starting to feel a little batter than i have been despite getting some bad pain in the back and chest area. I think the chest is the hernia playing up but it is still scary and you always feel the worst. I am hoping to get out and get some fresh air this weekend despite there going to be showers and my step father Brian also wants to get out and do some fishing so we planned a trip to the local lake and give a bit of Carp fishing a go and see if we can catch some lumps. Fingers crossed the weather wont be that bad and is currently following the same pattern as sun during day with the odd shower and a little cloud. This is perfect fishing weather.

I have been trying to stop my Omeprazole so i can get some blood tests done but can only manage to go 2 and a half days with out then i get so bad i throw up loads of acid and feel terrible. I need to go 2 weeks constant so i can get the blood tests done so i am going to talk with the doctor on my next six week appointment and check up to see what i can do about it. I only have to wait till Monday so its not too bad i haven't got to wait weeks for an appointment when they are really busy. Lets hope she can figure something out and why i keep getting allergy reactions every now and again.

Things can only get better…

Once again i have spent the weekend with no sleep at all due to pain waking me up every time i think i have dropped off to sleep sharp pain will cause my eyes to open and then i have to move position to stop the aches in the bones and the back. I am still getting allergic reactions or symptoms that imitate an allergic reaction and no sign as to what is causing them. They seem to have eased a little for a while so i am hoping they will eventually go but it still doesn’t answer what happened to cause them in the first place.

On a lighter note, my bowels have finally started to work again properly and i am going to the toilet as regular as i used to. Lets hope this improvement stays and i don't have to go through the nightmare of bad constipation again. I am still convinced it was the medication that caused it all in the first place and because of that i now have to take laxative tablets and drinks everyday in order for my bowels to work normally. Well while they are working ill keep taking the medication as it must be working.

Well i have started to feel a little better than i was the other day and am not having so many attacks again. I am hoping they are on the decrease again but you never know with this condition. I am hoping next weekend to get out and do a bit of fishing with my best mate and hope we can spend a few days out in the fresh air catching fishing and doing something that i love. Fingers crossed that the weather holds and we manage our trip.

Back to the old routine! Lets hope it gets better soon...

I haven't been able to update my blog for a while due to me having an attack whilst on the computer and knocking a whole cup of coffee over my keyboard resulting in the keyboard no longer working no matter how well i cleaned it. I could still go online using the mouse to control the system but was unable to type anything or update my web sites. The keyboards are cheap enough but when you are feeling really unwell and unable to get out to buy one it makes life a little difficult. Thankfully my good friend Brian brought me over his spare one the other day so i could get back online and get my sites back up to date with everything that's been going on.

My health has gone down hill yet again despite me starting to feel better last month and having a couple of months with very few attacks. For some unknown reason my attacks have tripled again and i am in a lot of pain all the time with my head, neck and back. Every time i have a cluster attack my back ends up being in pain for the rest of the day and every time i move it makes it a lot worst and can also set off further cluster attacks as the pain travels up the side of the spine and into the base of the neck. Also i keep breaking out in cold sweats all the time for no reason. Usually just before an attack happens i end up breaking out in cold sweat as though someone has turned on a tap and suddenly i am soaked. This time i am getting the sweats but no attacks  but when i do get an attack it doubles the sweat output and i end up having to change my clothes at least 4 times a day due to me constantly sweating.

I went to the doctors and told her what was happening but after checking me over she couldn't fins anything wrong that would cause it and was very confused as to what is going on. She has booked me in for some blood tests and said there is a possibility of an infection or bug but nothing seems to be showing it face as of yet. to add to the discomfort i have now again started to have allergic reactions to something unknown and my eyes are constantly sore and the same with the inside of my mouth. i think i am starting to get oral thrush again due to me being run down and the hiatus hernia i have causing problems. Trying to find out what keeps causing the symptoms has proved impossible as it just seems to come and go as it pleases and even with the help of antihistamines it still doesn't clear completely and i can constantly feel the soreness inside the mouth.

Again i have been missing out on my fishing as due to my health and also the weather being against us i just haven't managed to get out and go fishing for the last couple of months. I really need to start making the effort even if i am still feeling a little ruff and force myself to get out at least a couple more times before the colder weather comes and winter is again upon us. I have had to increase my injections early this year from 1 per day to 2 per day once again to control the attacks and i know when the colder weather comes i wont be able to get out as much as i could in the summer so i really have to try and make the most of any good weather we have left before the icy winds return. Lets hope my health starts to improve a little so i can start to plan a few trips and get back out in the fresh air, but when you are battling the beast on a day to day basis it becomes difficult to do the most simplest of tasks. 

The Fight With the Beast Continues....

As usual just when i think things are starting to get better and i am slowly improving something comes along once again and makes life a living hell. As i was just starting to feel better we thought it was time i should try and take my Sodium Valporate again to try and help control the attacks but unfortunately i have gone and ended up feeling ill after just one dose. An immediate reaction and me feeling as though i was going to die resulted in me not taking it ever again but it has now kicked off the allergy side effects as it did before and again i am struggling with a small dose of oral thrush, nettle style allergy reaction to my arms and hands and lumps on the back of my tongue. Pain in both sides of my neck causing temporary ear ache every now and again and also keeps setting off my cluster attacks making each day a living hell having to deal with 4 or 5 attacks and only being able to abort 2 is very hard when its become every day for the last 3 weeks. 

I no longer have any spare injections and am surviving day to day having to collect new from the chemist every few days as they are in shortage and hard to get hold of at the moment. I am taking medication for the thrush with some oral mouse wash and taking paracetamol but that doesn't even touch the pain. Every attack i have drains more and more energy from my body and sometimes i wonder just how much more can the body take. The attacks feel like they are getting stronger every time i have one and no matter how much i try and stay calm and say to myself don't worry i always end up becoming religious wishing to god to end the pain finally and let me be in peace. I wonder how many attacks do i have to have before it will finally kill me and how much more pain do i have to suffer. I then try and think of people worst off than me dealing with pain every day and wonder how do these people do it. How do they struggle on knowing each day is going to be just as painful and if not worst than the one before. 

It's not until you actually suffer and cluster attack you realize just how much pain there is. I have had abscesses, broken bones, stuff stabbed in me and cuts all over from a motorbike crash where i had the skin taken off me down the right side of the body when i slid down a road. I have never experienced the level of pain a cluster attacks gives you. You actually want to smash your head open and pull out the pain its so bad and you pray for death to come rather than wishing for an angle to bring a cure. This has to be one of the worst conditions i have ever known and to have no cure, no treatment and to say its never going to get better with out the help of strong medication is a hard pill to swallow sometimes.

I am just praying for a break at the moment and hope that there will be an end to my attacks for a while at l;east a few more pain free days so i can get back out and do a bit of fishing as with everything going on and my health up and down like a yo yo i am finding i am missing out on my fishing trips again so i need to do something about it and try and get a few trips in before the weather becomes cold and the attacks really start. When winter comes and the winds get colder the attacks will be more frequent and i know for sure i will only be able to get out once or twice in the winter months so have to make the most of the nicer weather at the moment. Fingers crossed the attacks will start to reduce again for a while.

Back to the Old Routine... ATTACK after ATTACK !

They do stay sticking with a daily routine is better for you and helps you to manage things such as depression and anxiety but when the routine also includes an attack from the beast i would rather not have any routines all together. Just when you think things are starting to improve and you are on the road to recovery the beast comes along and kicks you square in the plumbs. Just when i was starting to enjoy a few more days being pain free something had to spoil it. I can only assume its this crazy weather we have been getting for the last couple of weeks. One day is pouring down the next its hot and humid and the next is storms, it just doesn't seem to want to settle. Not only is it making my head play up something chronic but it also trapping me indoors.

Scared to go out in case of a big attack is also something that has been added to my routine and no matter how much i try and stay positive and try to get out and about for a while something seems to stop me. If its not the head and the attacks its the back and the cyst in my lower back playing up. Then when i think things can't get any worst the bowels and stomach decide to join in and have a party of pain and discomfort. What makes things worst is that you have to take medication in order to deal and control these problems and that medication starts problems of its own so you just can't win. If i take paracetamol, or any kind of pain killer to be honest, i end up severely constipated and problems with my stomach and bowels and due to the cyst in my lower left back i end up having trouble opening my bowels as i can't seem to use the muscle on the left side for some reason linked to the cyst itself as when i try it really does hurt.

I have been wanting to get out and do some more fishing the last few weeks but the weather has been against me. Every time i build myself up to go and get organised the weather has changed for the worst and started to rain with high winds. I don't mind it raining when i am fishing i just down want to set up the bivvi and gear in the rain as it will remain damp all the time i am fishing and i will end up catching a bad cold to go with everything else i have going on. At least if you set up before the rain you can nip inside if the skies open and keep dry and continue fishing. I am hoping that this bad spell will shift this weekend and then during next week i can get out and do a bit of fishing at one of the local lakes even if its just a quick day session i need to get out and get fresh air.

I am now waiting for my appointment to see my doctor again as i have been getting some really bad headaches on top of my cluster attacks on the opposite side from my attacks and ear ache on the right side. I have also noticed that i keep getting hot and cold flushes and think i could have an allergy starting again. It could be something to do with the Sodium Valporate i keep trying to take. Every attempt to take the medication has resulted in me becoming very ill or having an allergic reaction to something that we don't know is causing it all. Again i have had to stop taking that medication on the hope that my health will improve again and it looks like i may have to go back on the Pregabilin for a while until i can get to see my specialist at the hospital. I need something to help me battle with the attacks as the injections alone are just not enough. All i can do for now is try and relax and wait until my appointment comes around and hope that the attacks will ease off again soon and i will get some more pain free periods.

  

Even more attacks from the beast opens your eyes to suffering and pain..

As usual just when you think you have things under control circumstances change and you are back fighting the beast once again, This hot weather has been causing havoc with my head and the attacks i have. Normally my main attacks are triggered by cold spells and severe drops in temperature but this time it seems to be the extreme heat that seems to be setting them off and the low pressure patches we have that keeps bring rain and storms with it. When a storm is approaching the air feels like its charged and the hair on the back of my neck stands up and this shows me or at least warns me that an attack is on its way. This is the first time i have experienced the warmer weather actually setting off attacks and it amazes me how the body reacts to certain things. 

When the cold weather comes in the winter i see a huge increase in the amount of attacks i get in a day and i can have anything up to 8 or sometimes even 10 attacks in a day that leaves me drained and feeling like i want to die. This is the first time the hot weather has made me feel the same way. When it started the other week i thought i was just having a bad day and then i realized the attacks were not just a bad day but were here on a regular basis and the amount slowly increased to 6 attacks during the day and 2 at night. The worst ones are the early morning ones at around 3 or 4 am that keep waking me up and due to this i get very little sleep as there is no way of falling back to sleep after an attack no matter how tired or weak you feel.

I don't care what anyone says about pain, you NEVER get used to it no matter how constant it becomes. It always seems to be worst than the one before and the pain level it reaches is really strange as it effects my hearing and my balance and even my breathing. I used to think i was getting panic attacks at the same time as the cluster attack but i now know this isnt the case as i am so used to getting the attacks it has become second nature to me. Even though i am used to getting them and know what to do when they come i still cant get used to the level of the pain. I can't believe that the human body can withstand such trauma and agony it amazes me that i am still alive today after having so many bad attacks as the years have gone by.

I am hoping that this last bout of attacks are just a passing phase due to the weather and will calm down again soon as it is now effecting the top part of my back and chest not only on the left side where i get the attacks over the head but also down the right side where the pain is now spreading to. I actually thought i was improving over the last couple of years but unfortunately i seem to be getting the same routine as i had when it all started years ago. As the attacks increase so does the pain level leaving me drained all day long and unable to do anything or go anywhere. Again i am trapped indoors in my flat unable to go out and in pain all the time. I a,m planning to go fishing with a few friends on the weekend so i am hoping it will calm down a little by then and at least i will get a couple of days back out in the sun and fresh air. You don't understand what it is like to have freedom taken away from you until it happens, i now understand how disabled people feel when they are restricted and unable to get about or go out when they feel like it and have restrictions to what they can physically do all the time. I really do understand what being ill is all about!

More wake up calls from the beast!!

Once again i have been woken by the beast in the early hours. 4 AM on the dot the eyes open and the sudden feeling like something is about to happen. The realization that you don't feel tired and that you are wide awake which can only mean one thing. As you suddenly jump out of bed and rush towards your injections and the pain starts and shoots over the top of your head. Before you have even got the injection in your hand you are in extreme pain and your left eye has swollen and is pouring with tears. The left side of the face reddens and the eye and cheek droops and the constant sharp pain grinds deep into your brain. A Sharp line shoots over the left of your head as if someone had taken a ruler and cut cleanly with a sharp blade deep into your skull. The pain starts above the jaw on the left of your face and runs over the entire head into the back of the neck on the left side at the top of your shoulder. The pain effects not only the head but also causes spasms and pain to shoot down the lower left side of your back not to mention the aches and pains after the attack has finished.

Once you have taken your injection all you can do is hold your head and cry and pray to god for it to take effect or if that don't work then to stop the pain and put you out of your misery. The pain is at a level where sound becomes muffled and the smell of electricity is in the air. You feel like you are on the edge just clinging on to life by some unknown miracle and wish for it to stop. The pain just feels like it is getting stronger slowly and that there is no end to the level of pain you are going to get. Suddenly as if someone has switched a small switch in the side of your head it stops. No pain all gone. The injection has worked and kicked it. You know for sure it is the injection that has stopped it as the chest suddenly tightens and you become short of breath for a few seconds and then it begins to ease and the attack is gone. Unfortunately due to the pain level and the amount of attacks i have had the nerves in my upper back and shoulder are also damaged and the amount of pain i get in my upper and lower back after an attack is a big issue in itself. 

I have had to deal with these attacks for well over 10 years now and can honestly say they never get any easier to deal with and i sometimes think they are getting stronger as time goes on and its only leading to the inevitable. The one attack that i wont be able to handle or recover from. The on attack where the pain becomes so much that the body and mind will just say no more. I sometimes wonder how much pain the human body can be in at times and think surely there must be a point where the body and mind says it just cant take any more and switches off. God only knows when that point will come and i am just grateful that i do now get some pain free days even though they are few. I still get attacks every morning and can sometimes go weeks with very little sleep and end up really run down but i think about all the people who are worst than me and i struggle on.

I can now deal with 2 attacks per day with the injections so i am finding i am having more pain free days as we call them due to not having to deal with full on attacks for hours on end. At least my attacks have reduced and for now i am getting some sort of break but i know the luck wouldn't last and that the beast would have to return. I am not getting out as much as i should and find myself shut away in my flat all the time so i am really trying to make the effort top get out and do some fishing over the next couple of months while the weather is good as i can cope with the attacks better when its warmer. I am hoping the weather holds and my back doesn't start playing up or something else to come along and spoil things. I have my 6 weekly appointment with the doctor tomorrow so hopefully we can discuss a solution to my sleeping problems and see if i can rest more at night so i have more energy during the days to do things. Fingers crossed the beast has gone back to sleep for the rest of the day and i wont get a visit till the morning

Just when things start to feel better the beast returns...

The last couple of years had been bad when it comes to the amount of attacks i was getting on a daily basis. I was averaging up to 8 massive attacks in a 24 hour period and it really started to take a toll on my health. Then when i started on different medications i went from just suffering from the condition to also suffering from the side effects of the medication and although my attacks decreased i was still becoming very ill all the time and found myself getting cut off from the outside world because of my illness. I started back up fishing again as it was one of the only sports i really enjoyed as a young lad and found that it helped me to focus and keep my mind off my health even if i still had attacks whilst fishing i was able to deal with them and continue as soon as the attacks were finished. The last year my cycle seems to have returned and rather than continuing to have a high amount of attacks through the year as the warmer weather comes the attacks get less and as it gets colder they increase again. 

This year my attacks have still continued but are at the lowest they have ever been despite stopping half of the medication due to having allergic reactions and bad side effects and thankfully they have been manageable with my 2 injections i am allowed each day. I have seen more pain free days in the last couple of month than i have seen in the last 10 years. I am grateful for the help of my specialist who finally diagnosed my condition back in 2012 and ever since i have been able to battle the beast on a day to day basis. The trouble with taking so much medication is that it has an effect on the body and now days my health seemed to drop rapidly and i found myself having check ups for kidney problems , heart problems and even cancer. Thankfully everything was OK and it was just side effect of medication and the result of getting a hiatus hernia and IBS which was all caused from the amount of medication i was taking.

I still suffer badly from the hernia and have major problems when eating and swallowing and my bowels still only work now and again and i suffer from extreme constipation and IBS. My sleeping is terrible and i only get a few hours each night as i am constantly woken up by the beast in the early hours with my first attack of the day, but thankfully this isn't all the time like it used to be and i have been managing quite well. I was still getting the odd attack and due to the hernia causing an imbalance in some type of acid in the body i now keep suffering from fungal infections in the mouth and have to constantly use mouth wash every day to keep it from building up. I also managed to start getting out of the flat a lot more and even managed to continue my fishing with my first big trip of the year the other week.

The hot weather seems to be helping and keeping the attacks low but for some reason all of a sudden i have difficulty walking once again. When i try to walk any distance my legs muscles really ache like mad and after a while i begin to get really strong pain in the muscles and if i try and continue walking to ignore it they turn into burning legs as though my legs are on fire. I don't get it all the time but every couple of days this happens yet i don't feel ill any other way and i don't get tired or out of breath until i have been struggling walking for quite a while. I saw my doctor about this and even she was confused as to what could be going on. We suspect it could be the small lump in my lower left back causing pressure on the sciatic nerve during my sleep and that could be causing the symptoms but again its all guess work so i now have to wait until i see my specialist once again and also for blood tests to be done.

Just when i thought things were improving and my heath was getting a little better the beast decided to return and so far i am on my fourth attack this morning. I can only assume its the low pressure we have over us at the moment as its gong to rain a little later that could have triggered it as i don't know what else it could be. I am also getting the strong shadows once again and i haven't had those for over a year. When the shadows come it means i will have constant attacks through the day and there is nothing i can do except sit and wait until each attack starts and if i use up my injections then i have to ride out all the other attacks which can last up to an hour and half each one, by the time the attacks are over all i want to do is lay down and die. Every attack i have is the same , they start in the same place and travel over the left side of the head along the same path into the neck. They eye always starts to swell and close and tears runs constantly down my face. My nose blocks on the left side and my face starts to droop like i am having the beginnings of a stroke. I am just praying this is just a pad period and it will again ease as i am planning to go fishing again tomorrow with my mother and step father and really don.t want to have to deal with these attacks all day long. Lets hope the beast is only visiting and doesn't plan on staying too long!

A Nice Birthday Gift to Remain Pain Free for the Day!

Well the last few weeks have been interesting recovering from the symptoms of an allergy that we still don't know what caused it.  Recovering from really bad sunburn to my hands and lower arms after going fishing and getting caught out in the sun with no protection at all and ending up with swollen hands. Still getting the odd attack in the early hours mainly when we have weather changes from low to high pressure,  its getting so regular i could start my own weather service. My bowels finally returned to normal after the allergy seemed to stop but still suffer from IBS so they will constantly play up any way. But at least i am feeling better after going through such a row of bad luck with my health.

For the time being the only problem i am getting is whilst i walk the aches in the muscles in the back if the legs and top part of the legs every now and again and it feels like its burning. IT seems to be coming from the small lump in my back and the doctor is starting to think it is causing pressure on the sciatic nerve and that's what the pain and problem is as the rest of me seem ok at the time it happens. I can get a little short of breath through struggling to walk but that's through straining the body and not the condition. So i have to take things easy for a while while the doctor looks into it but it didn't stop me finally getting out and doing a bit of proper carp fishing and getting lots of fresh air and sun.

(A little too much sun at times)

The fishing trip started out a bit shaky with me loosing 3 fish but ended up having a great 48 hrs non stop fishing camped overnight fishing for the king carp species with the largest fish 18lb 10oz. I went with my friend John Rees and was also visited by a few other friends like Brian and Dean who are bailiffs at the lake its self and members of the fishing club we are in. I did have 2 attacks whilst i was fishing both brought on due to an unexpected heatwave on the second day resulting in me getting badly sun burnt hands and arms that have now peeled and recovered thank god. When having attacks i ask John to take care of the rods in case of a bit , i go into my bivvi which is like a luxurious tent and take the injection and stay there until the attack finishes and then return to fishing none the worst just a bit sore after. 

Its easier so stay inside the bivvi when having the attack as the  pain is too much and sometimes can scare passers by so being inside take that out of the equation and you can deal with your attacks. If anything was to happen i know i have people around me that will do everything they can and make the right phone calls and take care of things for me. So whilst fishing i actually feel more secure than i do at home. I Always take the medication i require with me and inform someone where i will be and for how long i am staying this way you always know there is help at hand if needed. 

Its finally another Birthday today and i have a lazy day indoor planned, nothing new there then! I will be going fishing towards the end of the week or the start of then next week for another 48 hour session on my local lake whilst we still have the warm weather, so depending on the passing storms i will try and catch 2 days clear and go then. I will also be fishing a few other places over the coming summer months as now i am feeling better i will try and get out fishing as much as i can as it gives me fresh air and something else to keep me occupied other than my illness. I still have to remember i am recovering and have a hiatus hernia so i do have to take things easy and not over exert myself but try and get as much exercise as i can, whilst i can and when my back and legs hurt stay and rest and don't make em worst. Try and make the most of the times i am feeling well as winter is not far away and as i know through experience the attacks return in number. At moment one or two and day controlled through my injections is amazing lets hope its stays a while.

Getting out in the Sun did me the world of good!

Well finally i managed to get out and do a bit of fishing despite having attacks from the beast wake me up every morning in the early hours. After suffering for months i decided to just get out and enjoy a bit of sport while i can and i am really happy i did. Getting lots of fresh air and sun seems to agree with me and i am feeling a lot better than i have been for quite some time. I decided on going for 48hrs non stop fishing with my friend John down at my local lake and we had a great time catching quite a few large Carp. I just wish it lasted longer as i really did enjoy myself despite getting sun burnt as we were caught out by the weather. It had forecast cloudy days and windy patches with a storm on Wednesday night but it suddenly changed and we ended up having a small heat wave for 2 days.

The sun was so bright and strong that despite me making sure i was covered up i still ended up catching the sun badly on the back of my hands, my ears and my neck. The constant heat also brought on attacks whilst i was fishing and i ended up having to take my injections twice. I just sat down in my bivvi (tent) and too the injection and waited for the pain to ease and then returned to fishing as soon as it had gone. I was quite surprised to actually get an attack when i am fishing as normally they tend to stay away but i think it was down to the heat that they started. I was making sure i drank plenty of fluids during the hot days so it wasn’t because of lack of water that's for sure as i even made a friend bring me extra water down on the second day.

The fishing trip did me the world of good and my body seems to have returned to normal for five minuets. My bowels are working normal again and the stomach pains and allergic reaction symptoms have stopped. I am still getting pains in the lower back and when i walk my legs are still burning and my muscles in the legs ache like nothing has ever before but its an amazing improvement compared to a couple of weeks ago. I still didn't work out what  was causing the allergy and can only think it was the thrush i caught in the mouth from smoking damp tobacco that could have caused it all. I am just happy that it has all calmed down and i am now praying that it stays like this for a while.

I am getting less attacks than i have had for years and i feel a lot happier in myself. The fishing therapy really did work for me this time so i can’t wait to go out again. Only 2 weeks away from my birthday so i am planning on a couple of days sessions before i go out for another long 48 – 72 hour session again. If my health continues to improve then i have to keep this up and get out as much as i can this year. I just hope that the walking , back and legs also start to improve as it is still painful to move around but no where near as bad as it was. Thank God!

You begin to feel well and something runs up and kicks you square in the plums….!

Just when you think you got things figured out something else comes along and kicks you square in the plums. After suffering from an allergic reaction for months and having major problems with my bowels not to mention the early morning wake up call from the beast i finally though things were on the mend and my heath was starting to improve. I started to feel a lot better and even the attacks are very few just lately so i began to think i am finally on the upward slope until i decided to get out for a bit of fresh air and exercise.

As i don’t get out much since the attacks began over 10 years ago my health has been going down hill rapidly and i have been in a constant fight to stay pain free and get over many different health problems. Now suffering from a hiatus hernia, IBS and cluster attacks i thought it was about time i made the effort and get out in the fresh air and hopefully that would help to improve my condition and help me to fight the remainder of my illness. I decided to take a walk down to the local lake that is about 20 minuets brisk walk from my flat down hill. They were holding the first stage of the Welsh Carp Championship fishing competition at the lake and as i love my fishing it was the perfect excuse.

I set off early in the morning making sure i had taken all the medication i needed for the day and also some injections just in case of an emergency. I also popped to the shop and bought some orange juice and a bottle of water to make sure i had plenty of fluids with me to drink and in case i needed to take a pain killer. As i walked down to the lake i had the usual back pains from the lump i have in the lower left of my back and the sharp pain running up the side of my back towards the neck. It wasn’t anywhere near as bad as it usually is so i was grateful and it wasn’t long before i was at the lake enjoying the brief break in the weather and the fresh air. I stayed for a couple of hours chatting to a couple of friends of mine that had entered the competitions and just after lunch i decided it was time to make my way home.

As i started to walk back to my flat along the country lane leading away from the lake i noticed i was starting to get pain in both of me feet at the bottom and this started to spread slowly up to my calves. I didn't think much of it until i was 10 minuets into the walk back and the pain became severe and spread right up to my waits in both legs. The pain was so strong that i was pouring with sweat even though it was a cold day. I continued on thinking to myself just get home and then you can rest so i pushed through the pain and it wasn’t long before both my feet and legs were on fire. They actually felt like they were burning and could hardly take a step. I ended up stopping and thinking how on earth am i going to get home i am in the middle of nowhere and i couldn’t walk another step.

I decided to sit and rest for a while to see if it would ease but it didn't and then the inevitable happened and an attack started so i had to take an injection. Now i was in agony trying to deal with a full on cluster attack and also staggering up the lane trying to walk with legs in just as much pain as my head and my entire body felt as if it was on fire. I actually thought that this was it, i was about to die and there was nothing i could do. At that moment as if by miracle i saw the son of one of my neighbours with his mate flying up the lane on a scrambler and when he saw me holding my face and staggering almost falling over he suddenly stopped and asked was i ok, i replied no and was about to collapse and have a major attack.

He then threw his mate off the back of his bike and told me to get on and hold on tight. He then ripped up the remainder of the lane to the main road and despite risking being arrested as you shouldn’t ride a scrambler on the main road he drove straight up the street to the front door of my flat. I couldn’t thank the boy enough as i ran inside the flat and collapsed on the sofa in immense pain. I really don’t know what i would have done if he hadn’t have come along that day and i still believe i don't think i would have made it and could have died as the body was in such a state for quite some time afterwards. Why this suddenly happened i don't know but believe it is due to blood pooling in the feet as i now have to sleep on a slope with my feet downwards all the time meaning that my circulation isn’t getting the chance to relax at night when i sleep. When i described the symptoms of what happened to my mate who has a similar problem with circulation problems he said yes that is what had happened.

He now recommends that i now sleep with my feet up in the air for a while until i get back to normal which means due to the hernia i now have to sleep in a V position. It does sound awkward and uncomfortable but i did this last night and managed to get more sleep that i usually do so there must be something in what he says. I will now make another appointment with the doctor and explain what happened and confirm my findings jus6 in case it is the nerve that caused it and not the circulation. It took me 3 days to recover from my ordeal and still i have weak legs but they are now getting better since i started to lay with the feet up in the air and the swelling is now going down. Talk about a scary experience. I have been through a lot of things ever since my diagnosis and the attacks started and several time i thought i was going to die.

People think that i am being over dramatic when i say i thought i was going to die but i would love to see them live one day in my life with what i have to go through. To be honest i would rather be diagnosed with a terminal illness and know i was going to die at some point rather than knowing i am going to have to suffer like this for years and years until one day the body just wont be able to take it any more. Not knowing what will happen from one day to the next is so depressing and stressful i think its worst than knowing you are going to die. I wouldn’t see an animal suffer as much as i have over the last few years and as i joke with my friends and say if i was a horse they would a shot me, a dog they would have put me down or a car i would have been scrapped by now. I just pray to god that things start to look up soon and i can start to feel well again but my future is in his hands and his alone.

Just when you feel better something comes along to mess up your day…

Just when you think you are starting to get well something else comes along and causes you to become ill or at least feel like you are ill. I am still getting early morning attacks and daily visits from the beast making me have to deal with pain on a daily basis but after having dealt with these for a few years now it has started to become the norm. I can’t remember the last time i had a day where i had no pain what so ever. I thought i had finally beaten the allergic reaction i was getting as the symptoms seemed to ease off gradually and i started to get the thrush in the mouth under control. I think i could have been the actual thrush that was giving me these allergic reaction type symptoms but its really hard to say that it is definitely the cause.

As things have started to improve and i have been starting to feel a lot better the last few days now the mouth is starting to play up again and starting to feel sore inside just as it did when the thrush first started. I am still using mouth wash and an anti fungal oral medication to keep treating it but for some reason it seems to be getting sore again. Not only a,m i having problems with my mouth getting sore but also pains in my back have started to become severe. Sometimes i think it could be the kidneys but there is no sign of infection at all and then sometimes it feels as though its a little to high up for it to be kidneys so i assume its something to do with the muscles. It could also just be down to wind again travelling around the body as i seem to get a lot of that just lately.

I have done a lot of research with regards to the hiatus hernia that i now have and found out that for some reason, due to an imbalance in the acid levels the body produces, i am now going to suffer from different types of fungal infections. This explains where the thrush has come from and why it has been so problematic. It also tells me that i will also suffer from allergies that i never had before so i can now understand where the allergy symptoms have come from. I also read that for some reason the hiatus hernia also causes a lot of back pain especially in the lower back region and can cause a lot of wind build up.  It seems that every symptom listed that the hernia can cause i have been suffering with.

I am grateful that the amount of attacks i normally get from my condition has reduced to a level that i can now manage on a daily basis and that due to the warmer weather i am finding that i can remain pain free during the day time and only have to deal with the attacks late at night or in the early hours. I know it can become annoying being woken up early every day but it a lot better than having to deal with up to 8 big attacks every day. I have started planning my first fishing trip of the season as the local lake by me has now re-opened and i have decided i will be gong for 3 days fishing with one of my mates and a couple of others will join us when we are down there. I am hoping that the weather holds and that we have 3 days of half decent weather so i don't have to deal with the beast too much whilst i am camped on the lake bank. I am really looking forwards to it as its been a while since i last when i am dying to get back out in the fresh air and the sun so fingers crossed all will go to plan.

As the weather changes the attacks begin….

We have been lucky as far as the weather is concerned so far this spring as we have been rewarded with an early summer and some brilliant sunshine. Unfortunately this doesn’t  improves my situation as far as cluster attacks go. As soon as we have a slight change in the weather the attacks begin and once again i am being woken up in the early hours of the morning. Every morning at 3 or 4am my eyes open wide and i know instantly why i am awake and for some reason i never seem to feel tired when it happens. Normally when you wake up you still feel tired until you are fully awake but when you are woken by the beast with its gift if pain you are always wide awake and feel as though you haven't slept at all.

Since i was diagnosed with a hiatus hernia i have  had to have my bed at a strange angle so i don't build up stomach acid in the chest area during the night when sleeping. This used to cause my head to be at an awkward angle and cause my neck to be in pain all the time. In the end i had to get a new bed and have the base of the bed risen at 35 degrees so that the mattress lays flat even though its up at an angle and this will help to reduce the strain on my neck at night. The pain in my neck started over 2 months ago and has been gradually getting worst as time goes on but when i got a new bed it started to improve. Now all of a sudden its started to get bad again and seems to coincide with the strange allergic reaction i keep getting.

I have been back and fore the doctors every week for the last 2 months complaining about nettle rash and sore mouth and painful neck that ahs appeared for no reason. I have tried everything i can think of to identify what is causing this reaction but nothing seems to stand out. I stopped anything with wheat in and also dairy products in case i suddenly become intolerant to these foods. I stopped different medications and different drinks in case this was setting of an allergic reaction but still nothing seems to change it. I ended up with thrush inside my mouth and on my tongue and believe me when i say that is a horrible thing to suffer from. I ended up having 3 different treatments over 5 weeks to try and get it under control and only now in the sixth week we have finally started to get rid of it.

I am still getting mild allergic reaction symptoms form god knows what but it has started to get a little better and it is possible that it could be the thrush causing all these strange symptoms. I am hoping now the thrush is starting to go and i am slowly feeling better that the rashes and sore mouth and pain will start to ease and i will get back to my old self again. I am grateful that my cluster attacks seem to be behaving themselves and haven’t increased in quite some time. I am only getting 1 or 2 attacks a day and now have more pain free days than ever before so i am trying to make sure this doesn't change and i don't do anything to aggravate it. The neck pains i keep getting does sometimes set of attacks when they become severe but i know when that's about to happen and i am able to prepare myself with my injections in order to abort the on coming attack.

Now, thankfully, as the warmer weather is here i should get less and less attacks each week and should start to feel better now that i am getting things under control. I don't want to speak too soon as i know from experience this can suddenly change over night and i could end up really ill once again. I am hoping that as i am feeling better i will be able to start getting out and about a bit more now and should be able to enjoy the sunshine and even get some fishing in this year. I missed out on a lot of fishing last year and it really drove me insane watching others getting out catching fish and i just couldn’t do it myself due to the levels of pain i was always in. So fingers crossed this will be a good year for me and you will find me on the river or lake bank real soon.

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.