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.

Woken by the back instead of the beast …..

Again i have been woken in the early hours due to agonising pain but thankfully it wasn’t from the beast this time but instead it was from the lump i have in my lower back on the left hand side. The lump is pressing on some nerves and is sending sharp stinging shooting pains right up the left side of my back under the left shoulder blade into the base of the neck. It’s this pain that can sometimes set off the attacks and Make every thing worst than it normally is. Yesterday i wasn’t so luck as i ended up waking up at 2am with an attack from the beast that i am sure was set off by my back pain. The attack lasted well over an hour and left me in agony for the entire day.

No matter what i did yesterday and what pain killers i took i just couldn’t get the back to stop hurting. When i walked or moved around it made everything 10 times worst and i was in screaming agony for most of the day and evening. It wasn’t until i decided to go to bed that the pain eventually started to ease off and i manage to fall asleep only to be woken again this morning at 3am. I am grateful that it wasn’t a full blown attack that has woken me but the pain in the back can be just as bad. The level of pain is so severe that i keep breaking out into cold sweats like someone has just turned on a tap and soaked my clothes.

At least i can get to see my GP on Tuesday and ask her advice what i can do and also chase up the physio therapists that were supposed to contact me after i left hospital but i haven’t heard anything yet and its been well over a month since i was last in hospital so i should have heard something by now surely. It is possible they are waiting until i have the endoscopy to see why my food and drink keeps trapping and making me feel uncomfortable and also bloating me up all the time. It seems to be taking ages to get my appointments after i have been referred. Both for a scan on my back to see what the lump is and also the endoscopy to see what is causing all the trouble.

I am still having problems with my bowels and constipation due to all the medication i am on and even though i am taking laxatives and stuff to ease the stomach i am still getting occasional stomach pain and cramps and a lot of wind building up. I personally don’t think it is the constipation causing all this as my bowels are opening and i believe it is down to the same thing that is causing every thing to trap when i swallow. It is all guesswork at the moment and we wont know for sure until i have these treatments and investigations. I just wish they would hurry up and not leave me in constant pain all the time. How someone can be in so much pain this day and age with all the modern medication they have is just beyond my comprehension and i pray that it will soon come to an end and i will get back some sort of quality of life even though i will still have to deal with the beast every day.