Not the start to Christmas i wanted ….

I so wish it really was father Christmas really did come and visit in the night and i was woken by him rather than the beast reminding me of the pain i am in all the time. Again 4 am this morning i was woken by the beast with yet another big attack. I wouldn’t mind so much but since yesterday i have been getting some nasty chest pain on the left side of my chest and tingling in the arm. The trouble is i get that from the damaged nerve so i can’t tell what is causing it. The chest pain in not normal but can be caused by wind and with my bowels playing up all the time i am convinced it is the wind that is causing it.

NO matter how much i tell myself it is wind it still doesn’t stop me panicking and worrying that it could be the heart as when it comes the heart suddenly starts to beat very hard like its trying to jump out of my chest. It is very similar to a panic attack so makes me wonder if , when i comes, i am just stressing and causing a small panic attack. Not only yesterday i was getting this but again this morning after i had recovered from my attack and prepared myself for a busy day suddenly it started again so i hope it is wind and it will shift soon because its doing my head in.

Not the sort of start i would like for Christmas but that's how it goes sometimes we can’t always be healthy on celebrations and i am sure there are people who are a lot worst out there than me. Christmas is a time for family and that's what i need to concentrate on. Spending the day with my family and having a great dinner over at my mothers house. I can’t wait. i Just have to remember to take it easy as my belly hasn’t been too good for the last week and my appetite seems to be on existent but i am going to try my best today.

I would also like to thank my friends and family for all their support over the last few years when my life suddenly took a sudden turn. It has been a difficult and worrying time and unfortunately my poor body has been to hell and back but i am still breathing and have to be thankful for what i have. I would like to wish you all a very Merry Christmas and a Happy New Year and hope you all get what you wish for and next year will be good to you.

Martyn x

The Mild Weather is not aggravating the Beast…

Although this year hasn’t started as cold as last year did i have still noticed the sudden change in temperature and weather and the head is still very sensitive to the cold weather. My attacks are still in the low numbers so i am pleased that they haven’t become as bad as they did last winter and thankful i am now on the right medication but it still doesn't solve the problem that i feel cut off from the world unable to go out in fear of an attack coming even though i have the injections to abort at least 2 of the attacks. The fear of the attack over powering the injection as it has done on many occasion and then having to deal with a full attack out in the open and cold and watching the faces of others as they see you screaming in agony and the sudden fear on their faces as they don’t know what to do or say.

When you try and explain everything is OK its normal they panic and think you are having a stroke when they see the left side of my face droop and my eye close and swell as the pain becomes so bad the ringing in your ears starts to block out any back ground noise and all you can concentrate on is the pain that's running over the top ofy9our head into your neck and behind the eye, like someone is shoving a red hot poker straight through your head. The attack i get are some of the strongest pain i have ever known and i can’t really explain how bad it gets but i am grateful i don’t have to go through half as much i i used to and wonder sometimes how i managed to cope until now.

With another year slowly coming to an end and another Christmas dinner being planned and shopping like crazy to try and take your mind off things i find it just doesn't help any more. I don’t even feel like going out shopping but i know i have to, i have to make an effort to get my life back in order and stop letting the beast control me with fear of the attacks all the time. I have missed out on so much this last year i have made a promise to myself that i would make up for it in 2015 now that the attacks have reduced significantly. I promised myself i would concentrate on my fishing again and get the web site running smoothly with new stories and adventures and start designing a new fishing magazine as i planned. It gives me a goal to aim for and something to concentrate on and that’s what i need instead of giving in to the pain all the time.

It annoys me also that i have problems with constipation and my bowels all the time as that always makes you feel a lot worst than you are. I have just got over a nasty cold that really nocked me for six and that was why i wasn’t updating my blog as much as i used to. I am now getting over the cold and starting to get back into things. My chest still hurts slightly so i may have a small chest infection from the cold but that will clear with the use of some cough syrup. I am booking a quick appointment to see my doctor on Monday so i can discuss my reduction of medication and start coming off all this medication i am on as that doesn’t help me one bit. I should only be taking what i desperately need and nothing else. Also i need to talk to her about removing this fatty lump next to my spine on the left in my lower back as it is causing me a lot of pain and Discomfort and i can no longer sleep on my left side or my back because of it. Hopefully they will opt to remove it or at least try and break it down with medication but at least they best do something as i cant go on with that causing me problems on top of every thing else.

Well that’s my moan and groan for the day and i would like to wish anyone who reads my blog a Very Merry Christmas and a Happy New Year and hope that 2015 will be a year that brings you all your dreams and hopes. So Have a Good One!

Attacked by the beast but still improving…

You open your eyes and realize that you are awake but don’t feel tired and have to wonder have you slept at all. It’s not until you notice the time on the click, 3am, that you realise the beast is paying you another early morning visit. Suddenly your whole body breaks out in sweat and your bed clothes become soaked and you start to shiver from the cold air hitting your body. Your eye starts to swell on the left side and the pain starts to build slowly behind the eye and on top of the jaw also on the left side. You jump out of bead and rush to get your injection but by the time you have it you are already in full attack. The pain shoots from the top of the jaw, behind the eye socket and out over the top of the head along the left side and into the back of the head where it connects to the neck.

The pain is so bad all you can do is hold your face and pray that it will end soon. You take your injection hoping that it will work as fast as possible and then sit holding your head waiting for the drugs to kick in and the pain to ease. You feel your chest tighten and your breathing becomes heavy as the injections starts to work and you feel a strange feeling along the path of the pain and suddenly as fast as it started the attack is over.  It’s amazing, no matter how many attacks you get you never get used to how they go and how strong the pain level becomes. It actually feels like the pain becomes stronger each time an attack appears.

You would think after suffering from so many attacks i would be used to it all by now but i don’t think you can ever get used to this condition as it is so unpredictable and can come at any moment. It’s not like it waits until you are home relaxing before it comes, you could be on a bus or in a car and suddenly an attack would appear rendering you completely at its mercy. It’s not until the pain eases can you start to do anything or try and get back on with what you were doing before the attack. Sometimes it can take up to an hour before you come to your senses again and other times it can just take 10 or 15 minuets , there is just no telling how long an attack will last until you have one.

It makes it very difficult to plan things or go out for a day out as you just don't know if the beast will show its face. I try and stay indoors especially in winter as the cold is one of the main triggers for my attacks and by staying in the warm and keeping my flat in a certain temperature i am able to reduce the amount of attack i get in a day by a minimum of 50% which is a huge difference from what i normally get,. It does help that i now have the injections and other medication that i didn’t have a few years back and though my life was going to end and it was going to finish me off. When i was diagnosed and told there is medication to help ease the attacks it was like a huge weight was taken off my shoulders. When i was told that there was no cure for the condition and that it could go into remission on its own i wasn’t very hopeful but this year i have seen a huge decrease in the amount of attacks i have been getting and although i still suffer i am pleased with the progress i have made.

I am just hoping that i will continue to improve and manage to claw back some of my life style that i lost when i became so ill. Hopefully now as things re slowly improving i can start to plan some kind of future for myself and start to look forwards to things rather than just worry how ill i am going to be each day. It feels nice to finally get my life back and start to feel like i have some sort of control again. Lets hope this improvement continues. I am just getting over a nasty cold that seemed to take a lot out of me so its time to strengthen myself up again and get back to my fishing as i have missed out on so much this last year i need to get back into it.

Better year than last year but still the beast chases me!

I have to be honest and mention that although I have been suffering from attacks on a regular basis they have in no way been as bad as they were last year. This time last year I wad getting up to 8 or 10 attacks within 24 hrs and I just couldn't cope. I am really grateful of the injections and medication I have been given since my diagnosis as it has helped me get into some sort of rhythm and control with my condition. I know i won't be able to stop them all together and that i will still suffer with this condition until the day i die but at least i can live some sort of life again. For the first time in many years i have actually started planning for the future and the year ahead. I lost out on a lot of fishing last year and a chance t visit some great places around Wales due to my illness playing up and all the side effects from the medication i was on. Now that i am no longer getting the side effects and have started to feel a lot fitter i am planning to start my fishing early next season and try and get in as many visits to different places during the year. I am even planning to return to white acres in Cornwall to take on their specimen lakes once again. 

For the last few weeks i have been struggling with a nasty cold that has turned out to be mild flu and i making me ache all over. It has been 2 weeks almost 3 and only now am i starting to feel a little better and my strength returning. I have been on different flu and cold medication and it felt like nothing was helping and i had to let it run its course and just stay warm and rest as much as i could. It is the worst cold/flu i have had in quite some years so i am going to book a flu injection with the doctor for when the real cold weather returns in January. The last thing i need now is to come down with another nasty bout of the flu when i have already had it. The next time will be a lot worst if i don't have the injections so its another booking with the doctor.

It is strange how i haven't had any attacks whilst i have bee suffering from the cold and flu although it has tried to play up the attacks have stayed away. Maybe my body is feeling sorry for itself as it has been through enough already. I wish that was the case but i know if i go out in the cold the cold wind on the face and in the left eye will surely set it off again and that's something i am trying to avoid until i know i have it under complete control. I was set to start the sodium tablets again as soon as my bowels were a little better but having the cold and flu has postponed it so i am now waiting until i feel a little stronger before i try taking them again. This is just in case of another allergic reaction to the medication as i feel that i wouldn't be able to cope with it whilst i feel weak so i will now wait for the cold to completely shift before trying again.

The last time i tried i didn't get an allergic reaction until after 3 weeks of taking the medication and then after i stopped i was still getting an allergic reaction that after a month of trial and error and a lot of suffering i found out it was the pregabilin that was giving me the allergic reaction and not the sodium tablets/ I am praying that the sodium will now help the head as i have stopped the pregabilin all together and this should help ease the attacks and stop them from starting. When i last took the sodium for 2 weeks i didn't have one attack. Not even a shadow over the period i was on the sodium so i am hoping this is the medication that will stop the beast as it seemed to work last time. Fingers crossed.

A stinking Cold to top things off…..

Now the cold weather has returned and so has the beast The last couple of weeks have been hell with attacks appearing every morning in the early hours waking me instantly and causing me agonising pain. Not only have i had to deal with the beast on a daily basis again but also the small lump in my lower left back just to the side of the spine. It is really causing me some serious pain and when i walk it makes it 10 times worst. I tried to walk to my local super market this morning but the cold was getting to me so badly that i was getting constant sharp pain right up the left side of my back into my neck.

It looks like the beast is slowly building back up to how the attacks used to be last winter. I am still not having as many attacks as i was last year but still enough to cause problems. It’s bad enough i am scared to go out of my flat in case an attack starts whilst i am away from home, you would have thought that the injections would give me some peace of mind but they don’t i still prefer to stay indoors when having a bad head day and let the attacks come and go on their own with out aggravating them. To top things off his week i also seem to have caught a nasty cold or even the start of the flu.

I seem to have a bad chest that keeps getting sore and heavy and bringing mucus up every now and again so i had to purchase some cough medicine alone with some cold and flu drinks just in case as when i get a bad cold or the flu i always get it really bad. I normally end up with such a high temperature i hallucinate and also can’t eat or drink anything as t constantly makes me feel sick. I am hoping that i can shift it this week before the xmas holiday as i don’t really want to be suffering from this cold during my xmas dinner.

I have had this cold now for just under 2 weeks and it doesn’t seem to be getting any better, in fact it feels like its getting worst but they say things feel like they are getting a lot worst before you start to feel better so fingers crossed i will start improving soon as it seems to be making my mood very low. Trust me to catch a nasty cold and cause the head to play up just when things were getting a lot better than they have been for years. Lets hope the cold and flu drinks and medication will kick he cold in to touch and let me get on with things again. So much for winter fishing this year. Every time i have tried to get out i have either ended up in pain or ended up feeling ill. Give me a break.

Attacks right through the week, every morning

Every morning this week so far have been an early start with the beast waking me up at 3 or 4 am and leaving me in agony for hours after the attack. I am getting pain like you couldn't imagine down the left side of my back and the lump that is next to the spine also on the left hand side is hitting nerves and causing shooting pains right up to the neck. This in turn aggravates the head and can sometimes be bad enough to set off what i call secondary attacks that can sometimes last 2 or 3 hours before the pain subsides. It crazy how nerve pain is so sharp and so painful its like having bad toothaches and abscesses all at the same time but inside where it cant be touched so you cant even rub it or massage it to ease the agony.

Each attack starts the same with a sharp pain above they eye and above the jaw on the left side of my face followed by a sudden break out in sweat. Then the sharp pain comes behind the eye causing it to swell and close and the amount of water that runs from your eye is crazy i can fill a small glass in minuets. As the pain shoots over the left side of the head it causes a ridge to swell up along the path of the pain and then it travels into the neck making it feel like there is something sharp trapped in the bones and each movement is agony and grinds. The head is the worst part of the condition as it makes you want top smash your head against the ground to open it and release what ever is inside causing you all this pain and agony and this can last anything up to an hour and half.

Its really hard to stay focused on the positive things when you are having these attacks and especially when you get the really bad days where up to 8 attacks can come one after each other making you wish that you was dead just so the pain would stop. I am lucky so far this winter as the temperature has dropped and my attacks have stayed steady with only around 2 or 3 days a month being very bad with over 3 attacks but most days are between 1 and 3 attacks and i have been managing quite well. It was only this week they have suddenly become regular again so i am hoping its just the pain in the back causing it to play up and not the beats returning for yet another winter of more pain.

I am so glad i did my Christmas shopping early this year especially after reading about black Friday hitting the UK and the craziness at the superstores with fights breaking out and being so packed you just cant move. I wouldn’t be able to cope with the crowds. Could you imagine me having an attack whilst stuck in amongst the madness inside the supermarket. They really need to get a grip and start the sales earlier in time for Christmas so there isn't such a rush and problem with people arguing and fighting in the store over discounted items. OH well, another year almost at an end and another one just around the corner and i am hoping that my head will improve and keep on improving as it has been over the next few years and maybe go back into remission so i can live a normal life and not one of a hermit.

More attacks from the beast but still fighting …..

It doesn’t mater how many attacks i have have or for how long i will end up suffering from this condition, no matter what i will never get used to the level of pain it brings when having an attack. Again 3am this morning i was woken by the beast with yet another attack that lasted hours and ended up making me feel really ill all morning and it doesn’t matter if i take the injection to abort it as when it is this bad it even over powers the injections rendering them useless. I am hoping it is just down to the frosty morning we have been having and that it will improve again soon.

I am so used to having the attacks now i wake up expecting there to be pain and am shocked when i open my eyes and there is no attack within seconds of me waking up. Most of the time when i have an attack first thing in the morning i don't have to wake up as i am wide awake as soon as i open my eyes. There has been times where i have dreamt that the attack is starting and that has woken me up in time to take the injection and stop the worst of the attack hitting me before it over powers everything. It’s amazing how the body reacts and adapts when it has to get used to something like these attacks happening on a daily basis.

I have been keeping my flat at a warm temperature all day and all Night. I have been keeping the temperature in the 16 to 19 degree range so its not too hot and not chilly so it doesn’t effect my head and thankfully it has made a huge difference so far this winter. I know we are only at the beginning of winter but it seems to be stopping a lot of the attacks from appearing. I have noticed if i go out in the cold then it starts to play up as i feel the draft on the left side of the face. As the weather starts to get colder i will have to wear a scarf or something to protect my face so that the icy cold wind doesn’t set off any attacks.

My back is still causing me agony every now and again as the fatty lump at the left side of my spine seems to be pushing on nerves again. I wish they would just take the damb thing out but i am waiting to here on what they want to do. I have my appointment on Wednesday with my share care nurse, we will be able to discuss everything that has been happening to me this year and what plans we can make to try and improve things and get the treatment i need. I can’t really complain as they have been good to me but they just seem to take ages to make any appointments for you when you are in a lot of pain which seems a bit strange. Other than that my treatment from neurology has been amazing and if it wasn’t for them diagnosing me and getting me on the correct medication i just don’t know where i would be today.

Wake up call from the beast again…..

Another wake up call from the beast at 2am and 3am this morning followed by an hour of agonising pain and wishing it would just stop or finish me off. Some times the pain becomes so bad you pray for it to end and all you want to do is smash your head against the floor or wall to crack it open and release the beast so it stops attacking you. NO matter how many attacks i get i can never get used to them. The winter weather is here and every day it is grey , wet, damp and cold i get problems with the head and neck. NO matter what preparation i do i just can’t stop the beast from showing his face.

It’s crazy to think there is nothing they can do to stop this from happening and that someone should have to suffer so much in this day and age of technology and advancement in medicine. They have almost taken care of Aids and slowly finding cures for different cancers yet they can’t find a cure for CH and the cluster attacks people get. Every time the beast comes it makes me feel sick as a dog and the ringing in my ears just becomes so loud i can’t even hear the TV when watching it.

When i was first told it was an incurable illness and that i would have to take strong medication and oxygen for the rest of my life i thought they was exaggerating the issue and that it would ease over tie where in fact they were right and i have git slowly worst even though i don’t get as many attacks as i did before i am getting them so strong that i jus can’t cope. I managed to get down to one a week with the medication over this summer but then suddenly ended up having an allergic reaction to the pregabilin tablets and didn't know why it was happening. It took me ages to find out what was causing it all and now i have found it and changed back to sodium valproate i am starting to get attacks again.

I know the attacks coming back have nothing to do with the medication and is in fact a reaction to the change in weather that i normally have every year around winter as it gets colder. Especially on those frozen morning or if it snows then i am in for a rough time. I wear a hat and scarf to keep the cold away from my head and face but even that doesn’t stop all the attacks from happening so i am just grateful that i am currently only getting 2 or 3 attacks a day. Last year i was up to 8 or 10 a day and as you can imagine it is like living in hell. Lets hope it continues to improve and the beast doesn’t get control of me again. I think the medication is working and helping to suppress the attacks as i can feel something trying to stop the attack from building but sometimes its just so strong it over powers everything including the injections.

The Beast is back….. Winter is here!

Again i have been neglecting my blog web site not that i haven’t wanted to update what's going on but more to the fact that i just couldn’t sit at the computer due to pain shooting down the left of my back from the neck and the head as the beast is back with vengeance. I have been woken every morning for the last 2 weeks with attacks from the beast. After having such a long period of no attacks and thinking it was going back into remission i actually had forgotten just how bad and how painful these attacks can get at times.

The pain starts just at the top of the jaw and behind the eye and within seconds of waking up the pain becomes so strong you want to scream. your eye just waters and you can’t see out of it and all over the left side of the face feels like it is swollen and on fire. The pain then increases to a level that you start to believe you are going to die and even welcome death just for the pain to stop. It shoots over the top of the head on the left side leaving a swollen ridge and into the back of your neck and right down the spine.

No matter how many attacks you have each one is different in the level of pain you get, some times you can ride the attack out and although it can last over an hour you can put up with the pain but there are times where it becomes so strong you just don’t know how the human body can cope with all the agony and sharp pain constantly ripping into the left of your face and behind the eye.  I am grateful for the injections i now have from the specialists as they are the only thing that can abort an attack but sometimes even these injections don;t work and all you can do is wait until the pain stops.

I am hoping it is just because we are now into winter and its the early morning cold that is kicking them off and that after a while i will get used to it and they will ease off again but i know how the beast can be sometimes and it is looking like i am in for a very painful winter. The cold seems to be one of the main triggers for my condition and all i can do for now is pray that it holds off or a while. Even now whilst typing the blog i can feel the shadow building and the threat of another attack lurking around the corner. God help me!

Well enough to get out fishing at last….

Thankfully the beast has been asleep for quite a while and i haven’t been getting to many flare ups or attacks until early this morning where i was reminded that i suffer from the condition CH. I had been feeling better for some while after fining out that it was the pregabilin that was giving me the allergic reaction and all the problems. Since i stopped the medication i have felt a lot better and stronger but am still having problems with my lower back. I am still getting a lot of pain even though my bowels are working again and i can move around it seems that fatty lump they found in my scan is causing a lot of pain across my back.

When i had the scan and asked what it was they told me it is a fatty lump and i questioned what can i do about it and all they said is go back and see your doctor in two weeks time so that's what i have to do. I now have to wait until next week so that i can book an appointment with the doctor and make a plan of action of what to do bout this lump in my lower back as its just going to get worst as time goes on. I am still awaiting for the endoscopy to find out why i keep[ choking on water or food and why it traps and takes ages to pop through allowing me to breather normally again. This i an on going complaint that just seems to be taking ages just to get seen but i will be patient eventually they will get around to me.

Even when i am typing this blog i keep getting aches and pains up my left side of my back and left chest into my left arm making it feel as though i have a dead left arm or someone has punched me in the muscle hard, the sort of things you would do as a kid. At least i am no where near as bad as i used to be and my attacks at the moment are minimal and manageable using  my injections and i thank god it wasn't the injections giving me the allergic reaction as i wouldn’t be able to live with out them.

I was feeling so much better i even managed to get out and do an overnight carp fishing trip. I must have chosen the worst days to go as it rained all night and went very cold and the council opened the slues gates and drained most of the lake so we were fishing over night in a lake with very little fish left in. But that's how it goes sometimes and i wont let that put me of catching my winter carp. I will choose another venue and even may do some day pike fishing at the local lake to see if we can catch a nice big pike but need to get some trebles and wire traces but it should be fun and can't wait to give it a try.

Attacks are a bit better but i know why i was getting an allergic reaction for sure…

I am now able to confirm that it was the pregabilin tablets that was causing the allergic reaction. I stopped them for a while and things became better and i no longer needed antihistamines and could get on with things as normal. I tried to start the medication again as i was having early morning attack and although i can deal with them with my injections i thought the medication would help keep them at bay but all of a sudden the allergic reaction was back and i was in trouble so again i stopped the medication and now feel a lot better again.

it’s crazy the amount of different side effects you can have from medication and for ages we didn’t know what was going on.. Even the doctors were confused as i was getting signs of heart problems and yet when they did the tests there was nothing there and my heart was fine. The allergic reactions were responsible for all the different thing that's were going on with me and i am just grateful we have now found out what it is, I still suffer from attacks but mainly in the morning when it is cold or if i get a bad cold spell on my head it will also set off attacks but i can deal with them with the injections.

You have to be careful how many injections you take as it says you are only allowed 2 and if you take 2 every day for a while it cab actually make the headaches worst and you end up with extra problems as you are relying on the medication too much so its a very fine line as to how much you can rely on this medication. I am hoping the next time i see my specialist they will find something else for me that wont cause so many problems. I am starting to wonder if all the problems i was having with the different medication they kept trying was actually down to the allergic reaction i was having and not the new medication its something i should ask the specialist when i do eventually get to see him.

i Am also still waiting for an endoscopy that i was referred for in June this year and almost the year has passed and i still haven't heard anything yet. I know there is a long waiting list bit sometimes its just too crazy. I still have drink trap when i drink or food trap when i try and eat for no reason and it feels like its chocking me until i pops as it passes through. What is causing it i haven’t a clue but its still going on and very worrying, AT least i wasn’t as bad now as i was a few month ago so i can see a huge improvement i just wish the attacks would go away all together but that's just too much to hope for..

Things are still problematic but looking better than before..

Thankfully the Beast is still at rest an i am only getting attacks on the odd really cold days at the moment but am still waking up in the early hours even with out an attack coming on. I have tried everything from tablets that relax you to strong sleeping tablets and still they do nothing i have even tried drinking warm milk before bed to see if that would make a difference. Sometime it could be that by 5 or 6pm i an exhausted and have o go to sleep but even when i stay awake longer and knacker myself out i am still wide awake at 3 or 4 am in the morning,

I have t be grateful for the break in the attacks as i have had to stop my pregabilin tablets due to them giving me some king of allergic reaction and making me ill all the time,. I tried many different things with no success until i stopped taking the pregabilin and everything started to return back to normal or as normal as i can be. When i do get an attack i wait to see if it s going to be a big one or just one that lingers and then disappears. If it is a big one then i will take one of my injections and that usually takes care of the attack after 15 or 20 minuets. I am still getting a strange line up the left side of my back that feels strange every now and again and what ever it is it causes me pain in the lower neck.

I ma grateful for the break in the attacks as normally at this time of year with the cold weather outside i am normally suffering from 5 or 6 attacks per day but am happy to put up with 0ne or twice as i can deal with them with y injections and then they pass. I am slowly learning to live with my condition as  it has now become part of my daily routine i would just wish my bowels would rerun to normal and stop causing me so many problems. I sometimes go a week or two where mu bowels work and i can pass things and don't get any trouble and then i get the weeks where they just decided to give up and stop working all together including going to pee as it becomes very hot and very nard to push it out and pass it. I have had every test i can think of and even been looking for infections but nothing had shown up yet. I have one more test to wait for and that is an endoscopy to find out why liquid and food traps when i am trying o eat or drink and i am hoping it wont take as long as the scan did. I still have to wait another week before i can book an appointment with the doctor to get the results of the scan and see if there is anything they can do about the fatty lump that keeps pushing on nerves every now and again making thing rather painful.

To be honest my heath has been looking up for some time now and i don't really want to jinx myself by saying everything is fine now when i know i still have the normal things to deal with. The daily Bi-polar giving me mood swings like a woman on the change and making my depression really bad at times. It doesn’t help that i don't get out of the flat much at the moment di=us to the weather. As soon there is a break in the rain i will go out fishing but i can’t see that happening until next week sometime so fingers crossed the weather will be on my side.

One appointment done another to go how long his time….

Well finally my appointment came for the scan on my back and the lump on the side of my spine in the lower left back. After waiting an hour to be seen the scan was over in minuets and i was told it is a fatty lump and they are not sure what if anything they can do and that i have to report back to the doctor in two weeks time for the results. That’s now 2 sets of results i am waiting on including the blood tests they did to try and find out why i was having so many allergic reactions for no reasons that we could put our fingers on.

After lots of different testing and experiments stopping different foods and drinks and medication it all turned out to be the pregabilin tablets i was put on when i was first diagnosed with the condition CH and now i can’t take them anymore as i end up having red rashes and become very ill including swelling on the mouth and face. I don;t know what else they will be able to give me to help me but at least i can still take my injections if and when i need them if a big attack starts. I am just grateful that they have been behaving themselves lately just i don’t want to count my chickens too soon as winter is coming and so is the cold weather ad that's when they become really bad,

So far i have had a good break from the attacks and have only been getting one or 2  a week for the moment with a maximum of 5 in a week and that's a huge difference considering i used to get that in a day. I am hoping this will continue and that maybe my condition is going into remission as it can sometimes do that. It has left me to concentrate on other things such as my web sites and my fishing so i am planning a fishing trip very soon, in fact it should be next weekend or during next week if the weather allows it, I will be nice to get back out in the fresh air doing something i love so much again and not have to worry about being in pain all the time.

Whilst i have been unwell and ill all the time i have slowly been building up all my fishing tackle to make sure i have everything i will need for when i go on my trips and i am proud of all the equipment i have built up and of course with the top of the range tackle i won from korum i can now honestly say i have a collection to be proud of so i cant wait to get back out on the bank and start playing with some new toys. It will b nice catching some big specimen fish to go in the photo album.

I think i have found that answer to why have been so ill all the time.

I don’t want to count my chickens before they have hatched, so to speak, but it is now looking like it has ben the pregabilin tablets all along that has ben causing me so many problems and giving me hell. The last few months has been like a living hell with all the different side effects and problems i have been getting with my bowels and pains in my back all the time. It was just but mistake i had realised that by missing a dose the effects started to ease away so out of curiosity i decided to stop the medication completely and behold i no longer am having an allergic reaction or feel like i have been rolled in nettles. The swelling below my chest has gone down and i am no longer getting pains in the kidneys.

It is still early days and could just be a coincidence that they have stopped at the same time as the medication stopped but i don’t really want to take them again just in case it was them that was causing the problems as i have been through enough suffering lately. I am just hoping i will now continue on the road to recovery and will be able to get back to my normal health. It just goes to show how useless the doctors are as they should have noticed this a long time ago when i first reported it and it has taken myself to do different experiments in order to find out what was wrong. I am still getting the CH attacks and i don’t think they will ever stop as now i am diagnosed with the condition i will just have to learn to live with it but at least i wont have all the other problems to go with it and make it ten times worst.

At least the attacks have reduced to just a couple per day or week instead of between 2and 10 per day as normal. I don’t mind to odd attack here and there as i can cope with them when they happen and thanks to the injections i now have i can keep them under control and continue my life as normal. At least i have reclaimed some sort of life back and hopefully can continue with my fishing now. I have been looking forward to getting out fishing for months now as i have missed out on so much due to me being ill all the time but now these problems have stopped i am determined to make up for lost time so watch out my local lake i am coming for you.

If i am right and it is the pregabilin that has been making me ill all the time i think i will have to see the specialist and see if there is something else they can recommend that will help when the attacks become bad especially during the winter and cold periods as that is the main trigger for my condition. At the moment the attacks are calm and don#t seem to be increasing even though the weather is slowly getting colder and colder each month. Fingers crossed it wont be as bad as it usually s and i am also hoping when they find what is causing the lump in my back and finally treat it or remove it it may even get rid of the attacks all together but i think that is just wishful thinking.

Hopefully on the road to recovery for five minuets..

After all the experiments i have been dong in order to try and find out what has been causing the allergic reaction i have been getting i have found something new that could be causing the problems. I had decided to stop my pregabilin tables to see if i was those that were causing all the problems. I had mu suspicions a while back as i started to build up a lot of wind and swelling below the chest when i started the medication and pout it done to one of the side effects and hoped that it could get better over time but this never happened. It is also about the same time i started to get all the bowel problems and constant constipation that became so bad i ended up being treated for faecal impaction and was even rushed into hospital or an enema which i can assure you is one of the most embarrassing things a person can go through.

Due my to my suspicions and tests with all other types of foods and drinks i found that after stopping the pregabilin completely the effects of an allergic reaction has seemed to reduce and it and is almost completely gone. I am still getting it every now and again and i still become a little sore during the day but i think that the poison coming out of my system, so to speak. I know it will probably take a while for it to clear my system and could take up to 2 weeks before the drug flushes out of my body but at least it isn’t getting any worst. I still get problems when taking my injection as it seems to make what ever is causing the problem a lot worst. I don’t know whether it is because it thins the blood and spreads the drug around the body faster making me suffer a lot more than usual but at least these last couple of weeks i have been attack free and when they do try and play up i find that if i relax enough and keep my mind off the beast i am able to stop the attacks from building to a level that i just can’t cope with.

It’s amazing how much i have learnt about different medications and the effects that it has on my body and also about the medication and drugs themselves. If you saw my shelves where i keep all my medication in one place so i am able to find what i need quickly you would swear i had turned into a pharmacy. Understanding the drugs and what they do to you and the possible side effects can help you when you need treatment as you know what to look out for in case of a problem and if something isn’t right you are able to spot it a lot quicker than any doctor could. Over the last few years i have been through so much and had so many problems i could probably write and encyclopaedia with regards to the condition CH and the side effects of the different medications. I am grateful that the beast hasn’t been playing up no where near as bad as it used to and i am hoping this is the start of a long break in my pattern or cycle. It has been known that the condition can go into remission for a while and i could end up having a year or 2 break from all the pains so its now time to concentrate on my normal health and start to get myself fit again.

I am still waiting for the endoscopy to see why i keep getting food and liquid trapped when i eat or drink and it becomes very difficult to swallow as if i am chocking and then suddenly pops as it passes through to the gullet. I was referred back at the start of the year and it has taken almost 12 months since my last contact with them and i am still no closer to getting the procedure. I am also still waiting for the scan on the lump on my lower back so they can see what it is that keeps pressing on nerves on my left side of the body resulting in agonising pain and soreness all the time. As soon as they do the scan they will be able to see what it is and what’s causing it and maybe i will then be able to have it removed with a small procedure and finally will be able to move around a lot more that i can at the moment. I know the hospitals are busy and understaffed but it seems like they give priority to the foreigners rather than the persons that have been born in this country. I don;t really want to sound prejudice but that is the truth of the matter. I met a man who had exactly the same problem as me but not as severe as he was only getting pain once or twice a week where as i get mine every day. He also had a small lump at the side of his left spine that turned out to be a small cyst within a week he was in hospital and by the end of the following week he had the cyst removed and he was back home working again. If it was just because he was polish i don’t know and don’t understand but why is it when i have exactly the same problem i have had to wait almost a year for any treatment. I know it sounds a little racist but it is true and i am slowly getting fed up of being fobbed off when i seriously need the help.

Well on a better note i have been feeling a lot better today and that the allergic reaction i was getting has seemed to calm down for a while. I am hoping i am right when it comes to the cause and that i will now be on the road to recovery, I know it will take some time and a lot of effort on my part to get healthy again but i think with the help of my fishing and my web sites to keep me busy i will soon be back to my old self. For the first time in a long while i have started to feel more positive and hope it continues and that i am not tempting fate. The last time i thought i was getting better i suddenly took a turn for the worst and ended up back in hospital so fingers crossed this won’t happen again.

I have to be thankful for small breaks in the pain..

Even though i am still suffering from some type of allergic reaction to god only knows what i have to be grateful that the best has been behaving itself lately and i have been attack free for a while now. I am really hoping my condition is going into remission and that i will start to have a lot more pain free periods but this morning it tried to start a couple of times but i managed to relax and not worry about it and this seemed to calm it down and it didn’t set off the attack as it normally does. It has tried to play up a couple of times this week and i have managed to stay calm and just massage the side of my head and that seemed to be enough to stop it kicking of and bringing the beast. I am praying it continues to get better especially as we are about to hit winter and the cold weather which is one of my main triggers,

What is causing the allergic reaction we are still unsure and i have been back and fore the doctors several times this month and all they can do is give me antihistamines and hope that it eases soon. I have tried cutting out wheat and dairy products but am still suffering from something. I have also stopped taking my injections as i don’t need them with the head staying calm and also my pregabilin as it could be the medication what is causing it to feel like and allergic reaction. All i do know is when i wake up in the morning i feel as though i have been rolled in nettles and my skin stings all over the body and becomes red raw. When i take the tablets it eases off but if i take an injection it becomes 10 times worst. I have changed washing powder and cleaned the bedroom and bedclothes just in case it was something to do with that as well as all my clothes have been washed through in case i had suddenly become allergic to the washing powder i have used for years.

I am now watching what i eat and drink to see if there are any signs of a cause and i have noticed if i have milk in tea or coffee then i become worst so i have changed to lactose free milk just in case. I am avoiding wheat just in case it is when i eat bread or donuts and also staying away from anything with strawberries in as i used to be allergic to them when i was a child but seemed to grow out of it. Just in case it has started again i am making sure that nothing i eat has them in the ingredients. I really don;t know what else i can try at the moment and i am hoping it will soon get better as it has really messed up my stomach and bowels. I have started to feel better for a few days and then suddenly become worst and i still can’t put my finger on what’s causing it all the time. I have even watched out for mossy bites or bites from any other bugs just in case it is that that’s causing all the problems.

My bowels just don;t seem to want to work properly and even now with the help of laxatives and medication i am still having difficulty. Every time i try and go it is like i can no longer push down with my stomach muscles making it difficult to push anything out. I believe it is from my stomach being swollen from the allergic reaction and the wind pouches i now have just under my chest. When i wake up in the mornings the swelling seems to have gone down a bit and i am able to go to the toilet for a short while but as the day goes on the wind builds back up and so does the swelling making it very difficult to go. I know that the laxatives can cause wind but i wouldn’t be able to pass anything with out there help so i am just praying i can find a cause to all these problems soon and get my body functions back to normal or as normal as they can be.

Due to all the problems this year i have missed out on so much fishing. Fishing is now the only hobby and sport i am able to do due to my condition and it is the only thing that helps to relieve the stress and keep the beast away. I am hoping that now i have started to improve i will be able to get out again and am now planning my next trip which will hopefully be next weekend or just after and i will go for 3 or 3 days non stop carp fishing at my local lake. Believe me as soon as i am well enough and next year, hopefully, i will be making up for lost time and visiting some new waters and venues around Wales as i set out to do in the first place. I have also started a digital magazine all about fishing in Wales and this is set to launch in December this year. With my web sites and the magazine and also my fishing i now find that i have plenty to occupy my thoughts and stop me from thinking doom and gloom all the time due to my problems and illness. Its nice to keep busy and keep my mind off my illness so i am hoping this will continue and slowly but surely i will start to become a little better and claim back some of my life.

The Beast is resting, but i am still having problems….

Thankfully i have had a break from the beast for the last few days but i am still getting problems from something that is giving me what i can only describe as an allergic reaction. My forearms and legs become red raw and feel like i have been rolling in nettles and also my face cheeks and forehead feels the same. I also get a sore mouth on the inside but not the throat. Its really strange what's going on and i can’t think what is causing it. I have tried everything from washing all my clothes and bedding out to make sure there is no soap or powder left in them just in case something was changes in the making of the washing powder that i have been using for over 10 years. I have also stuck to water only as a drink to make sure it wasn’t something i was taking like coffee, tea or orange juice. I have stuck to simple foods to ensure it wasn’t something like bread or milk causing an allergy. I just don;t know what else i can do.

It seems to be getting worst instead of getting better and my bowels were shut for ages. It was almost 8 days and i couldn’t open my bowels not even a little and then on Sunday i finally managed to open then several times. I won’t go into too much detail as it is disgusting but you can imagine after not being able to go for 8 days what came out and the smell was incredible. I have been using Movicol laxative drinks in order to get my bowels moving again with instructions from the doctor as to how many i should take. I started off with just 2 drinks per day but had to increase to 4 drinks within 6 hours and that seemed to shift the blockage so to speak. However i still find i am bloated and getting problems as when i woke this morning and tried to go to toilet i am again bunged up so it looks like i need to take more drinks until it starts to come out easily and loosely as the doctor instructed me. If they haven’t started going naturally by tomorrow i will have to book to go back to the doctor again.

Ever since my diagnosis and when i was put on the Pregabilin tablets it seems i have had nothing but problems with my bowels and my health has gone down hill rapidly. I blew up with hard wind and had small wind pockets or fluid pockets just under my breast on the lower chest and now this has increased in size and looks and feels strange. My stomach has also become swollen and is about 3 sizes larger than i normally am making it very uncomfortable all the time and makes me scared to even eat meals but i know i have to keep eating to keep up my strength. I am making sure i drink plenty of fluid so it helps to shift the bowels but nothing seems to be helping and no matter how hard i try i just can’t seem to get myself well again. I know i will never be as well as i used to be and that i will now suffer with the CH condition for the rest of my life but just when i thought i had the bi-polar under control all hell breaks loose and my mood drops fast.

I hate the depression you get with the bi-polar condition as you always panic over silly things and think the worst all the time. At least i am not having the highs like i used to and becoming uncontrollable and doing stupid things all the time so i have to be grateful it isn’t as bad as a few years back where i ended up in hospital as i was loosing my mind. With every thing that has been going on and all the trouble i have been having with my health i find it very hard to try and keep a positive attitude and not think of all the problems all the time. I used to write my blog every day but have noticed i have been letting it slip as i just don’t feel well in the mornings and end up sitting there wondering if i am going to live until my next birthday. This is a horrible way to think all the time and i really need to get help and snap out of all the doom and gloom. My mind is doing overtime and i really need to get back to my fishing as it gives me something else to concentrate on and focus my thoughts. I don’t know why but when i am fishing it is the only time i actually feel happy in myself.

The beast is back with a lot more problems…..

The beast is back with vengeance as i was woken up this morning at 3 am by an attack that lasted well over an hour and has left me in a lot of pain. This time the attack came on as normal and wasn’t started by the lump in my back. I woke up and suddenly burst into sweat and within seconds i was soaked through to the bone and had to change all my clothes. I took my injection but the pain was just too strong and over powered it. I still ended up getting a tight chest and breathless from the injection but it didn't seem to touch the pain level and the attack just continued. My left eye closed and a ridge became swollen over the top of the left side of my head along the scar where the head was split open all those years ago.

I have been going through hell just lately as i have been having some really strange things happen. I have been having what we can only describe as an allergic reaction to something that we can’t put or fingers on what it is. My forearms become red raw and feel as though i have been rolled in nettles and my cheeks on my face and forehead also become sore and by the end of the day my eyes become very sore. I have been taking Piriton tablets that seems to calm the arms down slightly but don't seem to stop the face or the eyes from being effected. On top of all this i seem to be bringing up a lot of acid from my stomach and this is coming out in my sweat causing me to become very sore. Also my bowels have decided to give up and stop working completely and even with laxatives and a lot of straining for hours i still can’t seem to pass anything i am praying the laxatives start to work soon as its been a week now and i haven’t been able to go to the toilet. If it lasts any longer i will be in trouble.

All these thing that are happening to me seem to have all got worst gradually over time ever since i was put on the Pregabilin tablets and my stomach became swollen and i ended up with a lot of hard internal wind. Since this happened my health has gone down hill rapidly and i haven’t even been able to get out and go fishing as i used to. I am determined to get to the bottom of all this and why it is happening so i have cut out all drinks apart from water to make sure its not something i am drinking i am also going to be very careful about the food i eat and if i see that anything makes me worst then i will stop it immediately and cut it out from my diet. This is the only way i will find out what is causing the allergic reaction. I suppose it could be the acid i am producing so i have upped my Omeprazole tablets to see if they help and they have started to ease the stomach problem so fingers crossed we will se an improvement soon.

With all the things happening to me lately it has had me very worried and scared as i thought something bad is happening and i am becoming really ill. Every test the doctors have done came back negative and they couldn’t find a cause yet here i am suffering like crazy. They have now asked for a full bloods works to try and find out exactly what is happening and also tested my urine to see if i still have any infection. The infection i did have seems to have cleared and the antibiotics did the trick even though they made me feel a lot worst at the time. All i can do now is wait for the blood results in a week and see what they come up with and in the mean time try and make myself as comfortable as i can.

I have never had so many problems all at the same time before and it is really taking it out of me. All i want to do is get well enough so i can go fishing again as i have missed out on so much this year but i am determined to make up for it over the winter and the next couple of years as soon as i get this allergic reaction under control. Today i am feeling a little better than i have been so far but when i woke up this morning because of the cluster attack i noticed that its not only my arms that are becoming red raw but the entire body. Every part of me is now looking sore but thankfully it doesn’t feel it yet nor is it itchy so i am hoping it will calm down and ease away over the next few days if i keep up the treatment with the antihistamines. Fingers crossed things will start to improve soon.

I am in a really bad way….

Again i have been letting my blog slide not because i haven’t wanted to sit down and write about my illness but because i have been so unwell just lately. I wish i could say it is because of the Cluster Attacks being bad all the time but in fact they have been really good for the last few weeks. I have only been getting one or two attacks per day that i can control using the injections i have. The main problem is i seem to be having an allergic reaction to something or i am being poisoned from the inside.

Each morning i wake up and my forearms are red raw and feel like i have been rolled in nettles or fiberglass. My cheeks on the face and forehead are also just as bad and my tongue is swollen and mouth feels like i have swallowed fiberglass or pepper. What is causing it i really haven’t a clue. I am swelling up like a balloon and my bowels will no longer work properly. I am really suffering badly. I am booked to see the doctor at 3.30pm and have had to suffer like this all weekend. Thankfully i got some Piriton tablets that has helped to ease the worst of it and i can swallow again but i can still feel that something is effecting me.

At one point i thought i could be because i have been bunged up and constipated for so long that i am being poisoned from the inside or it has turned septic but the nurse said to me that wasn’t possible. It sounds gross but every now and again i can smell poo and it makes me wonder if it is coming out of my paws and sweat or even my breath but then when i check my breath it is fine. What is happening to me? I am really worrying all the time as it doesn’t seem to get better. I have cut out all the things i thought it could be such as coffee and tea and even soft drinks such as orange or fizzy drinks. I am only drinking water now.

I also washed all my clothes again and put it through a heavy rinse to make sure there was no washing powder or soaps left in the clothes just in case it was something in the washing powder that they have changed. I am now only having one meal a day and am very picky what i am eating as i am afraid it is something i could be ingesting and that's why i feel poisoned at the same time as having the allergic reaction. I am getting pain in both my sides every now and again and keep breaking out in a temperature and sweat. I am praying the find out soon what is happening as i feel that one day i won’t wake up as my tongue may swell up and throat and stop me breathing in my sleep. Twice i have woken up suddenly finding it very hard to breath and had to run in and take the tablets to ease the effects. God help me!

I feel like i have been poisoned …….

Yet again i have been woken by the beast in the early hours. This time the attack didn’t come on naturally like usual but was actually started from the lump in my lower back causing me pain right up the left side of my body and into my neck. This aggravated my condition and eventually set off a massive attack. I don’t know why it is causing me so many problems and why i have been so ill over the last few months. This year has been to worst year i have had when it comes to my health. I have been so unlucky and have had so many different things happen to me i just can’t keep up with it all. The year started out great with new medication taking effect and me seeing that all my debts were sorted out and becoming a bit more financially stable releasing a lot of stress and worry. Then i went and won a massive fishing competition getting me all the tackle i could ever dream of having and it was at that point everything started to take a turn for the worst with my health. I wasn’t even able to go out and use the new gear i had won.

I still have a lump in the lower left of my back that is causing so many problems and pain its just crazy and still have around 5 or 6 weeks before i will get an appointment. I am still getting food trapped and liquid when i swallow and almost chokes me. Why it does it we still don’t know and i was referred for an endoscopy about 3 or 4 months ago and we are still waiting for a date for the procedure to be done so they can find out what is going on. It’s crazy the amount of time you have to wait in order to get seen or have treatment. By the time they get round to seeing me and sorting it out and am afraid its going to be too late and permanent damage will be done. Just lately i have been really ill and put on antibiotics yet i have had the feeling that i am being poisoned and my skin keeps on becoming sore and stings as though the poison is trying to come out of the skim paws. I have also been swelling up in the stomach and just under the chest, i have 2 wind or water pockets that also cause pain as it pushes up into the chest. I don’t know why all this is happening to me and it seems like the doctors aren’t interested. I am going to have to make another appointment today to see the doctor urgently as i became even worst over the weekend yet again.

I am really getting fed up with all the problems i am having and no matter how many times i see a doctor and complain they just send me away and give me tablets to take that don’t do anything and i still end up with the same problem suffering every day. Pain has become my constant partner and i am even dreaming of death. It’s not good to think that way especially when you suffer with bi-polar and even when you only suffer it mild depression can suddenly take over your life and make you feel that it isn’t worth living any more. I am so close to that feeling at the moment as i just can’t seem to get the help that i so desperately need. I have tried everything to make myself well again, i have changed my diet and started to eat healthily even though its the most expensive way of eating. I have made sure i don’t do things that can cause my condition to play up and i have been taking my medication religiously but still i am suffering and can’t seem to get myself well again. As i am sat here typing i can feel my skin slowly getting sore as i start to feel poisoned once again and don’t know why it is happening. I am honestly scared and don’t understand why no one will help me even when i tell them how bad i am its a case of take some pain killers and tablets and off you go home to suffer even more.

Just when things start going well you get knocked back down…

Just as things started to look up and i was feeling a bit positive i ended up having a knock back like nothing i have ever had before. As if its not bad enough suffering from an incurable illness i have not got some kind of big infection that has so far dumfounded the doctors. On Thursday last week my bowels stopped working completely and i just couldn’t go to the toilet. Thinking it was just a bad case of constipation through all the medication i started to take laxatives and as mentioned in my previous blog i started to feel better as the bowels opened on the Sunday and started to empty. I had a feeling like i had been poisoned on Monday morning and by the afternoon this eased away and i was feeling a bot more healthy and started to get better.

Then on Tuesday morning i woke up and noticed my ankles were swollen. As i reached down and was massaging my leg i noticed that a thumb print from where i had pushed into my leg had stayed there and the skin didn’t level out as it would normally. I then tried it again and when i pushed in the indent would stay there so i ended up ringing the doctors and making an emergency appointment first thing Wednesday morning. After waiting to see the doctor and suffering in the waiting room as sweat was pouring off me and i was feeling very dehydrated i was called in to see one of the locum doctors. I had done a urine sample upon arriving at the clinic so they could check for any problems and believe me when i say it took a while just to fill half a vile let alone the whole thing.

When the doctor tested my urine his face dropped and i started to worry a little he then walked over and asked to listen to my heart, He told me my heart rate had increased and my urine was showing signs of an infection even though it wasn’t discoloured or painful when trying to pass it was just hard to push out. I explained to him what had happened and the pains i was getting in my back that i thought was from the lump i have. He then told me he needed to do some urgent blood tests and called the reception who in turn rushed me through to the nurses room and took my bloods to be whisked off for testing. I was told to go home and if i feel any worst come straight back and to start a course of antibiotics for 2 weeks.

I have rung the clinic and they have told me my bloods are ok but they need to discuss my blood count the next time i am in in 2 weeks what ever that means so i am no closer to getting cured or finding out what is wrong with me. Last night i was constantly waking up with chest pains and then when i got up i continued having chest pains up until lunch time when it eased off. I know i have some kind of infection but we don’t know what it is and why it has caused me to swell up like a balloon and why i feel so bad. infections can cause havoc with your body so it could all ease off when i finish the course i just have to wait and see so fingers crossed the antibiotics will do the trick. Lets hope i can get well over the next 2 weeks and then i can go fishing as i have missed out on so much this year i need to make up for it.

More Attacks and Pain but at least i am looking towards the future…..

Yet again i have been woken in the early hours by an attack from the beast. The pain shooting from behind the eye, over the top of the head and into the neck making it feel like there is something trapped in my neck and causing it to grind with every movement. I had to take one of my injections as the pain was so bad my body burst into sweat drenching my clothes in an instant. Even though i had taken the injection i still had to ride the pain for about 10 to 15 minuets and believe me it feels like hours when you are in agony. The lump in my lower back, just to the left side of the spine, has been causing me real problems this last week and i have been in so much pain i just don’t know what to do. I am still waiting for the scan to find out what it is and what they can do to get rid of it as it keeps pressing on the nerves in my back causing me agony up the entire left side of my body and making me so uncomfortable its crazy. No matter how many pain killers i take it still causes pain and problems and because i can’t take strong pain killers all i can do is ride it out and use paracetamol to take the edge off the pain.

Due to all the medication i take and of course the pain killers i have been suffering from bad constipation and the last couple of weeks it has been worst than ever. If you are eating you breakfast whilst reading this blog i suggest you finish it before continuing… The constipation has been so bad i have been blowing up like a balloon and have been in agony as my sides have been really sore. Either i have a blockage or at least did have one as yesterday my bowels finally opened after straining for over an hour on the toilet and taking strong laxatives. Suddenly they opened with a pop and my bowels emptied and the relief i got was amazing but the smell was like nothing i have ever had before. A chemical type of smell worst than a sewer and it brought tears to my eyes in an instant. What ever was stuck inside me for days must have been festering and turning toxic as yesterday i actually felt as though i had been poisoned. My stomach is still bad and swollen and my side still hurt every now and again but at least my bowels are open and slowly emptying. I am hoping that i will start to feel better after a couple of days other wise i will have to go back to the doctors as i am feeling really bad at the moment.

Again my food and drink keeps trapping in my chest and making me feel as though i am about to choke. I have to massage my chest and push pressure on it to aid the food and liquid to pass through. When it does start to pass through i can hear a noise like air escaping through a crack and a wheezing sound as it finally pops through. Again i am still waiting for a procedure at the hospital known as an endoscopy, where they pass a tube down you throat into the stomach to see what is going on and why i am getting stuff trapped all the time. It’s crazy the amount of time i have had to wait and its almost over 6 months since i was first referred for the procedure. I know the hospitals are stretched and understaffed and with the summer holidays i can imagine they are busier than ever before but its starting to become a joke the amount of time it is taking for me to get seen and everything is starting to get worst. Lets hope i hear some thing soon before it gets too bad and i end up rushed into hospital by ambulance. Sometimes i think that is the only way i will end up getting seen and treated but i really don’t want it to get that bad.

Whilst suffering at home and missing out on my fishing this season i have been trying to keep myself busy by improving my web sites. As i have only managed a couple of trips this year and am waiting to go out sometime at the start of this month, September, i have been taking stories from the other members of the club and writing them up so that there is still something for my readers to follow. I have also taking the site a step further by introducing a monthly news letter that will keep people up to date with the latest adventures and competitions and what we have planned for the future. I have also decided to start my own digital magazine and have finished the first one and am already laying out the Christmas issue ready for Decembers release. I have really got into the design side of it al and laying out the mag, not only does it keep me busy but it also gives me something to look forward to. It also helps to keep my mind off my condition instead of dwelling on it all the time and feeling sorry for my self. At least i am doing something positive that people will benefit from. You never know it could be a massive hit. I have decided that the magazine will remain free for everyone just like the fishing club i have started and officially open in June 2015. I have a lot of things to look forwards to and just wish my health would start to improve a little so i can just get on with things and get back out on the bank and catch me some fish. Lets hope its will start to improve soon.

So much pain and discomfort all the time i scream for help but no one is listening ….

All over the bank holiday i have been suffering not only from the beast and the early morning attacks but also from the lump in my back and something else which i haven’t a clue what is going on. All i know is i have blown up like a balloon and my sides are hurting. Not only this but i have been having real problems trying to go to the toilet and am unable to push anything out. When i try it just causes me agonising pain in the back and sides due to the lump i have pushing on nerves and also when anything does come out it’s like pushing toothpaste out. A bit gross to talk about i know but its really hard to pass and it causing me real problems.

On Monday it got so bad i actually though something bad was going to happen to me and i have been having night mares every night now for a week and don’t know why they are happening.It’s obvious i am worried about my health and feel that something serious is about to happen and no matter how hard i try to shake it off and try and think more positive i just can’t get rid of the problems i am having. I have been getting chest pains again on the left hand side and also feelings like my shoulder is being crushed. I am also becoming very short of breath and can’t do anything that takes a lot of energy as it drains me so quickly its ridiculous. I can’t even go to the hospital as all they do is tell me to go home and take pain killers and wont listen to what's going on with me plus i can’t go to the doctors as they seem to have the same attitude and say i have been referred for treatment and have to wait my turn and wait for the appointments but in the mean time i am getting worst and worst again.

A couple of weeks ago i started to feel better again and my strength was slowly coming back and then suddenly on Thursday i took a turn for the worst. I really don’t know what to do any more and i am scared stiff of what is going to happen to me if i can’t get help soon. It just feels like no one is listening and they just don’t want to help. If a child was this bad they would pull out all the stops to get them well but as soon as you pass a certain age its as thought they don;t want to know anymore. If i was an animal they would have put me down by now as they just wouldn’t want the poor thing to suffer the way i am suffering. I am really scared of dying for the first time in my life.

Suffering from the condition CH there has been times where i have been in so much pain i have welcomed death and also when i was really ill because of the bi-polar in me i have even attempted suicide on a few occasions and had to be admitted to hospital for my own protection but this was all down to not knowing what was happening to me. No i have been diagnosed with the condition CH i can understand more of what is going on but these other health issues have started to over take the condition i suffer. Not only is it making me feel low and depressed but its also making me feel desperate and i am scared of myself. I know how stupid my own mind can become when i drop into a depressive state and i don’t want to become like that again, all i want is some answers and the pain to stop as it is just constant and every day now.

I thought having CH and it not being curable was bad enough and having to suffer up to 8 attacks every day was just torture but now the attacks have reduced in number and i am getting more pain free periods these other health issues have now come to the front and are causing havoc with my body. I need to get help quickly but don’t know who to turn to and who to talk to as no one seems to want to help. God Help me!

Another visit from the beast in the early hours…

Another visit from the beast in the early hours this morning just when i thought i was in for another break period. I have managed only a day with out any attacks just to have the return them following day. I have been lucky during the summer as i have managed a lot more pain free days and have only had 2 or 3 attacks per day increasing to maximum of 4 or 5 during a bad period. This is a huge improvement compared to last year and it has helped having a hot summer this year.

Unfortunately the attack lasted quite some time this morning even though i had taken my injection. Again the pain wasn’t only in the head area but spread right down the left side of my back again and was also aggravated by the lump in my lower back. I managed to get to see my local GP this week and she said she checked on the referral of the scan and i am now on the computer waiting list so hopefully it will only be a short while until i hear from them and we can find out what the lump is and how we can stop it from causing so much pain all the time.

Not only has the lump been causing me problems and my back playing up all the time but also when i swallow food and drink. It has been trapping on the way down again and causing me almost to choke. It’s a horrible feeling and scares the life out of me when it happens and i have to massage my chest and push in the centre to help the blockage move and finally pass through with a pop. Why it keeps doing it i can only guess and need to have the endoscopy that the specialist referred me for. Unfortunately, yet again, its another appointment that will take time before i get the procedure date  so have to wait patiently for the letter to drop on my door mat.

Although i have been having these problems again i am still feeling a lot better than i was a couple of month ago ad also now that i stopped smoking cannabis completely i am no longer having bloating problems. It seemed like every time i smoke the stuff i ended up with an allergic reaction. I must have become allergic from smoking it all these years and now i have had to stop which is only a good thing at the end of the day as i couldn’t smoke it when i was having CH attacks anyway as it would just make my head a lot worst so i had to give up eventually.

The Beast is back but i am not letting it get me down….

Unfortunately the break from the beast didn’t last as long as i would like as again this morning i was woken at 3am with another attack. Just like before it started from the front of the face just above the jaw and behind the eye. The pain then travels over the top of the head along the scar i have from when my head was split open. The pain then enters the neck making it feel like you have grit or something trapped in the joints of the neck and every movement causes it to grind and gives you even more pain.

When the attacks first became chronic they used to be restricted just to the head and neck but now due to the lump i have in the lower left of my spine that keeps on touching nerves the pain from the attack now travels down the left side of the back behind the shoulder blade and all the way down to the bottom where the lump is located. When my back plays up on its own it can sometimes set of an attack from the beast, as i call it, and can make everything a lot worst than it already is.

At first  never thought i could ever experience more pain that what i get from having a CH attack but now i have the back problem i can honestly say my pain is at a level that the body just cannot take. There has been many a time i am sure i have passed out as my vision goes and i loose my hearing only to wake with a throbbing head and loud ringing in my ears. I suffer from tinnitus anyway due to my younger years of being a DJ in a night club, where i had my head split open. Due to the loud music all the time i ended up damaging my hearing and now suffer with a ringing and static noise in my ears all the time and this become a lot louder when i have one of my attacks.

Again the attack this morning lasted well over an hour and just over powered my injection. By the end of the attack all i wanted to do was split my head open to release the beast but in reality there is nothing i can do except wait for the attack to finish and disappear just as fast as it started. I sometimes wonder how much more of this i can take and maybe one day i will end up having one attack to many that will just finish me off. When it all became chronic was the start of a down hill slide with my health and i have had to battle many different side effects of medication and also side effect of the illness itself.

For the last couple of weeks i have been feeling a lot better than i was and this is just another slip in my recovery that i am determined not to let it get me down again. I have struggled hard to get myself fit enough so i can get back to my fishing at least as i don’t mind getting attacks on the side of the lake as i can just lay in my bivi and relax until the attack is over and then return to my fishing. I just have to make sure i am fit enough to get myself there and back and to move all the tackle around. I am lucky as i have the help of some friends but i can’t always rely on them so i have been doing small exercises in order to gain a bit more strength and movement/ i am hoping its enough so i can continue my journey and start visiting some new lakes and rivers and get back to doing something i love so much.

A break from the beast at last but for how long?

Thankfully i have managed to have a break from the beast for the last few days and i have also managed to re-charge my batteries with plenty of rest. If only i could say the same about the lump in my back though, it has been causing me pain non stop. Every time i move about or walk to the shop i end up in agony and very sore. I have tried every thing i know in order to ease the ache and pains it keeps giving me. I have taken paracetamol pain killers and that doesn't help, i have used special ibuprofen gel to rub in the area of the lump and that doesn’t help. Apart from taking extremely strong pain killers which will just cause me more problems i just don’t know what else i can do.

I am still waiting for a date for the scan to see exactly what it is that is causing me all the pain and pressing on the nerves in the back. I know it is pressing on the nerves as at times it effects the entire left side of my body causing cramps and agony up the entire left side of the back into my shoulder and neck. It also makes the skin feel as though it has been burnt and starts stinging plus it can also set of my attacks when it is really bad. I thought it was ban enough suffering from CH let alone have this other problem to contend with. Its driving me crazy at the moment.

I am also still waiting for my appointment to have an endoscopy to see why food and liquid is trapping all the time when i eat and drink and almost chokes me before finally passing through what ever blockage is there. It can be scary at times as you feel as though you can’t breathe and that something is stuck in you throat. I am grateful that the last few weeks it hasn’t been playing up as much as it normally does so l4ets hope what ever is causing it is slowly on the mend but i doubt it as my luck with my health isn’t that good.

Talking about luck i still can’t believe that i wont the online Korum competition and now own some amazing professional fishing equipment. When the prize arrived it came in 3 massive boxes and i was amazed at the amount of gear that was there. I couldn’t believe my luck and still can’t and now i can’t wait until i go fishing again. So i really need to get myself fit so that i can get out on the bank.

Another New CH (Cluster headache) Poster

The beast is back but i am feeling more positive..

Again the beast has decided to return and wake me in the early hours with yet more attacks. This time the attack was so strong that even the injection had very little effect on it and i ended up having to ride out the pain for well over an hour. It was so bad that the ringing i get in the ears became so loud that it over powered the TV and i couldn’t hear a thing (apart from the loud ringing of course). Also the amount of sweat that was pouring off me was crazy and i had to change my top twice in a mater of a few minuets. I don’t remember that last time i had one this strong but it scared the hell out of me and ii actually thought my time was up and this attack was going to be the one that finished me off.

You may think i am silly thinking that way but when you get so much pain and nothing seems to help or stop it you honestly believe that the body can’t take much more and that it will eventually give up. Thankfully it stopped just as quick as it started and now i just have a sore neck and a feeling like i have dirt stuck between the joints in the neck and every time i move my head it just grinds away. It’s such a shame they have come back so violently as i have had a few days with out any attacks just the pain in the back from this unknown lump that seems to be pressing on the nerves and causing the left side of the body to experience cramps, pain and numbness.

Again i am still waiting for the appointment for the scan to see what the lump is and why it is giving me so much trouble and also the appointment for the endoscopy to find out what is going on when i eat and drink and get things trapped when i try and swallow. I am also awaiting an appointment to see my specialist and every time i ring to try and talk to him or see if he is available i am told he is busy or not in and i have to leave a message but i am starting to wonder whether he is actually getting my messages. I don’t know what else to go. I can’t go to A & E as all they do is tell me they can’t treat me as it is an on going investigation and just to go home and take my pain killers. Little do they know i don’t take pain killers and have to ride the pain until it stops or eases off.

I have been feeling a bit better over the last couple of weeks and my energy is no longer draining. What was causing the drain i haven’t a clue but i am grateful that it has stopped and has allowed me to return to a semi normal life again and i can move around all be it in pain. The strange weather we have been having seems to also be effecting my condition as when the rain comes it starts to play up the head even though it is warm. he humidity also gets to me so i tend to stay indoors most of the time but i am going to have to put a stop to this as its starting to drive me crazy. I have been given a chance to go fishing with some of the beast and most professional fishing tackle i could ever dream of having after winning an online competition so i have to get out and do some fishing i think.

There's no point in letting the equipment just sit there so i am planning o go and have a good few days specimen fishing before the end of the month and then maybe plan a trip to France either next year or the year after. This is something to look forwards to. It’s been a long time since i started to thing about my future and actually plan things and feel that i can look forwards to something special. Its a good thing and means that i am now coming to terms with my condition and no longer giving in to the depression. For the first time in years i actually feel positive and am looking forwards to getting out and doing some fishing and also meeting new people and making new friends. It’s about time!!

Attack free and a competition winner, maybe my luck is changing ….

Thankfully i have managed a couple of days attack free but am still getting a lot of pain from this lump in my back. No matter how much i try and avoid aggravating it i still end up in agony by the end of the day. There was a few times i thought it was going to set off some big attacks but luckily they didn't develop. I just wish i could get rid of the pain completely and then i would be able to get back to the thing i love doing such as fishing etc.

I am still getting a lot of wind and my stomach is still bloating up all the time. I believe this is down to the food and liquid trapping all the time making me feel as though i am about to choke but then suddenly passes through to the stomach with a strange feeling and a pop. I don’t know why this is happening and have my suspicions. It could be from where i used to retch when i was having really bad and strong attacks all the time. It is possible that i may have caused a hernia or a tear from almost throwing up all the time but when i did nothing would come up.

The trouble is there are so many things that could be causing the problems that i am having it’s crazy. I am still waiting for a date for the endoscopy to try and find out what is going on and why my food traps in the way it does. I am also waiting for the scan on my back to see what on earth this lump is and why it keeps pressing on the nerves effecting the entire left side of my body. I don’t understand why the hospital would leave someone in so much pain and agony all the time and leave them waiting months for a procedure to make them feel better. It wouldn’t be so bad if it was the case of just waiting until they make me feel better but i am still at the investigation stage and no closer to finding out what is going on and what they can do to make me feel well.

One bit of amazingly good news is that i won a massive fishing tackle competition from Korum. I entered the competition a few months ago to win over £1000 worth of top professional Carp and Specimen fishing gear and they sent it to me during the week. I was amazed at how much they sent as i was only expecting a 2 rod carp set up and they ended up sending me the latest top quality 3 rod set up with all the luggage and accessories you could ever dream of having including a multi shelter, alarms and the latest in fish care. It is a fisherman's wildest dream to have all the top end equipment and i have been so lucky to be awarded it so now i need to get out a bit more and  get some fishing done. I can’t wait until i get out on the bank and have a play with all my new gear talk about boys with new toys.

Another attack from the beast and some good news for a change …..

Yet again i have been woken by the beast this morning at just gone 3am. Again it was an attack that just seems so powerful and painful that it over powered the injection making me ride the pain for well over an hour. The pain was so intense the ringing i get in the ears was so loud i could.t hear a thing. I tried to turn the TV on for some back ground noise and i couldn’t hear what was going on and the volume was up half way which is very loud for my TV and the neighbours could probably hear it. Again i had to change twice as i was soaked from the amount of sweat that was pouring off my body.

It didn’t help that i seem to have a cold or infection at the moment and all i can taste is a metallic salty taste that is driving me crazy. It is so horrible and makes me want to throw up all the time. I have tried different drinks in order to get rid of the taste but as soon as i stop drinking it comes straight back immediately. I went to see my doctor yesterday and she said it is possible it could be an infection but she couldn’t see any sign of it and didn't want to give me antibiotics as it would be a waste if its only a cold. She agreed that paracetamol would be the best answer as it would help to bring down my temperature and help with the pain in the back.

Whilst at the doctors i was able to talk to her quickly about the lump in my back and the pain i am in all the time and she agreed to give the hospital a push and find out why i haven't had a scan yet. She agrees that it must be pushing on the nerves in my back and that is why i am getting so much pain up the back and over the shoulder onto the chest. It also travels into the neck and can sometimes set off attacks. We won’t know for sure what is going on until they have done the scan and found out exactly what the lump is.

She has also told me to take photographs of a mole i have on my left knee that seems to have tripled in size over the period of a year. She wants me to keep taking photos every 6 weeks for a period of 6 months to see if there is still growth and at what rate it is growing and how bad it becomes. At the moment it looks normal and there is nothing to worry about but she would rather be on the safe side. As i said i don’t need any more health problems to start appearing as i have had a guts full. The last few years has been hell with all the problems i have been getting and just when i was starting to feel better i end up catching a stupid cold or infection due to me being run down. I just can’t seem to catch a break with my health.

On the good new side of things, i have gone and won a competition inline for over a £1000 worth of top of the range fishing tackle. I couldn't believe it when they notified me of my win and now i can’t wait until i get out and do some fishing. The prize will be with me this week and then i am gong to plan my first trip with the new gear. At least i have something to look forwards to instead of doom and gloom and pain all the time. Happy Days !

More agonising pain even though i had a weekend of rest…..

I managed to have a fairly pain free weekend apart from the back playing up every now and again due to the lump in the lower back pressing on nerves all the time and causing agonising sharp stinging pain right up the back into the base of my neck. Thankfully it wasn’t all the time and i managed to have a relaxing weekend with out the beast coming to visit until late on Sunday evening. Then again this morning at 3 am i was woken by another attack from the beast. This time it resulted in me having to ride the attack for around an hour as the injection didn’t seem to effect it or ease it at all. Again i burst into cold sweats and had to change my clothes twice as the amount of sweat that was coming off me just kept drenching my t-shirts and shorts.

I am thankful that i managed a relaxing weekend and was given the chance to re-charge my batteries so to speak. No matter how many times i have an attack i just can’t get used to the level of pain that comes with it. I have never felt anything like it and it always seems like it is getting stronger than i have had before. It could be my imagination when having the attack but it feels to me like they are getting worst as time goes on. I am hoping this isn’t the case and that it’s just me being sensitive to the level of pain i am getting or that it is down to having pain in the back that it seems to be getting worst.

I no longer have to wait weeks for me to see my GP as my appointment is on Tuesday at 5.30pm and i will be able to speak to her about this lump in my back playing up and pressing on the nerves effecting the entire left side of my body. I can even feel a numb feeling behind my shoulder blade as i am sat typing up my blog and then suddenly the numbness turns to pain if i move slightly. The skin on the left of my body feels like it has been burnt or scolded and is stinging where it is being effected by the lump pressing on some nerve in the back but thankfully it doesn’t last for long and eases off after around 10 to 20 minuets.

I am praying there is something they can do soon that will stop all this from happening and help me with the pain i am constantly getting. I don’t want to be taking pain killers all the time as this ends up making me feel worst and causes me bad constipation so they really need to sort something out soon. I have gone for over a week with no pain relief at all as when i do take a pain killer it just ends up making me feel sick and even worst than i feel when i have the pain. I am hoping hat i don;t have any more attacks today as the last one this morning really took it out of me and i feel really drained even though i managed to rest over the weekend.