I don't know how many more times i will be able to pick myself up again

Once again i find myself having to deal with other problems caused by medication and side effects. Every time i think i am getting to grips with things or i am starting to improve there always seems something that starts up to put a dampener on everything. Its not enough that i have to deal with cluster attacks on a daily basis for the rest of my life but to have all these other problems as well is really starting to annoy me and get me down all the time. Again the hernia is playing up and causing food and liquid to trap due to a build up of wind from a side effect of tablets. the wind causes the hernia to push up against the chest under my heart and not only causes pain and fake heart attack symptoms but also causes the food to trap and stop it going down. This builds up over time and i end up with some crazy acid re-flux. 

The worst thing about this constant re-flux is the fact every now and again , when the weather starts warming up i get a fungal infection start to appear on the back of my tongue and then down the throat. Having thrush on the tongue and in the mouth is most unpleasant and ends up giving me allergic reaction style symptoms and makes me feel so ill. i have to use gel and mouth wash to get rid of it which usually takes a week but when its really bad i can end up on strong antibiotics. This has only started ever since i was diagnosed with the Hiatus Hernia. The specialists said i would start having allergies to things that i have been able to use or take for years as the body chemicals are now imbalanced as the body constantly attacks the hernia for a while and then starts to adjust as it gets used to it. I supposed its just a matter of learning how to deal with it myself now. 

The clusters have been behaving themselves thank god but i have been having some strange migraines rather than attacks. The flashing lights and visual effects just before the migraine is a bit worrying as they are very strong and makes me start sweating every time they appear. I haven't been using the injections when having cluster attacks instead i have only been using oxygen and i have found that i have been able to manage on oxygen alone. OK i am going through twice as many cylinders than before but who cares if it means i don't have to take the injections and will keep them only for really bad times and emergencies when out and about. 

I have been feeling rough for the past 3 weeks due to some virus. I have been blocked up and getting bad chest pains due to the hernia and the re-flux. things have only just started calming down so i am hoping on getting out and doing some fishing next week as this always helps with my mental state of mind and has been my main focus whilst dealing with the illness and all side problems. I really don't know what i would have done if not for my angling so i am very grateful for that. I am hoping to start my fishing season early this year as thanks to a friend i have now joined a private syndicate with some monster fish in and i know fishing here catching some stunning fish will do me the world of good. Out in the fresh air doing a sport i love will only help to give me a positive outlook for the up and coming year ahead. Lets see if we can make this year a good one and not get knocked down too many times as i don't know how many more times i will be able to pick myself up again. 

Fed up with being knocked down again when you just get back on your feet!

Once again i am left wondering why is it that every time i start feeling like i have the clusters under control and things are starting to improve something comes along to mess it all up.  it really annoys me that i start to feel well and good in myself and then something else starts and i end up feeling ill or it aggravates the CH and i end up having loads of attacks again. This time its not the CH that's playing up but a nerve in my neck effecting my left arm and down my left side of my body.  Its not only causing numbness but also pain to a level as high as a cluster attack. This is also travelling down the left side of my back and down my left leg. I know the nerves were going to cause problems but wasn't expecting anything like this to happen. Its driving me crazy.

Its not enough that the nerves are playing up but i also seem to have a stomach bug that is causing me a sickness feeling and loads of wind. I keep bloating up and then wind pushes up against my hiatus hernia causing discomfort and sometimes chest pains. Now when you put all symptoms you could swear someone was about to have a hear attack. Chest pains followed by numbness and pain in the left arm and shoulder, anyone would think i had angina. I went back and forth the hospital for most of last year having loads of tests for the same pains and symptoms and they said my heart was fine and no sign of angina so it must be nerves and muscle. Its strange that it has all started again the same time as last year. Its looking like it could be a seasonal thing.

I can't seem to stop myself panicking every time i get the chest pains and arm pains together. Panicking is making everything feel worst and no matter what i try and do to keep busy its still playing on my mind. My heart seems to be fine although a little fast due to the worry and stress so I am sure its nothing to be concerned about but i can't seem to stop it getting to me.  I am booked in to see my doctor on Wednesday but if this continues for the rest of the day i will have to do an emergency appointment in the morning as i just cant go on like this as its driving me insane.

I am praying the is nothing to worry about and its just the weather getting to the nerves once again along with a stomach bug, this would explain why i feel so bad. I am being careful not to make myself feel worst and am doing everything i can at the moment. it's just so annoying as i was feeling great for the first couple of weeks at the start of the year and i though this year could be a good one and i finally get to grips with my health problems but its not turning out that way no matter how hard i try. Lets hope this stomach bug or what ever it is eases soon and things will again calm down. Thankfully the clusters are limited to early hours of the morning and late evening so most of the day i am attack free, at the moment. How long this will last for god only knows. 

A New Year is time for a New Start

The last couple of months of 2018 turned out to be a testing time with my medication change causing havoc to my system and also causing my clusters to flare up like crazy. Thankfully they started to then settle down again as Christmas came and I am now back to where I was before they flared up. The pregabilin medication seems to be taking the edge of the nerve pain so I am not getting as many problems as before but I can still feel it getting worst as time goes on.  The clusters are still appearing during the early hours and late evening as the temperature drops outside. These seem to be the main times I will get an attack if one is going to appear. The ones in the day time are only being set off by the neck and back pain. What ever damage I have caused to these nerves seems to be spreading and I can feel the damage spreading down my back from my neck. 

The lower back pain seems to be coming up from the tail area. Due to the pregabilin helping with the nerves I can now feel where the lower pain is coming from and am able to feel it when i push in with my fingers. This is something i need to get checked as it doesn't seem to be connected to the nerves. The trouble with having so much back pain from the damaged nerves in the neck it was masking the pain down the lower back and although I could feel the pain I always thought it was the nerve causing it but this doesn't seem to be the case. At the moment it seems to be behaving itself and I haven't had much problems with it but I should  get it checked just t be on the safe side as the last thing I need is something else to come along. 

The bad cluster and the back pain at the end of the year put a stop to my fishing and my plans to do some winter fishing so I haven't been able to get out as much as I would like. It has been getting me down a bit lately as you can get fed up with staring at the same 4 walls all the time. Now the back is slowly getting a little better and my clusters have decreased again I am hoping I will be able to get out a bit earlier this new year and get some fresh air doing the sport I love the most. The trouble with the colder months is that the weather really does play a part with the clusters and nerve pain. When ever its icy cold the pain always seems 100 times worst than normal. Fingers crossed my back doesn't play up that badly this year as It will be nice to get back out on the bank again soon. The sooner the better!

I have noticed this year that the cold weather hasn't increased my attacks to the level it normally does and I am wondering if it has something to do with the way i am managing the neck and nerve pain. I was convinced , when all this started, It was the neck that was making me have so many cluster attacks but my neurologist thought it was the attacks making my neck ache. Now I know I have nerve damage in my neck and I try to exercise it properly and take care not to aggravate it, I don't seem to have as many clusters set off by this pain as I did last year. Am hoping by continuing to do what I am doing I wont need so much medication all the time and will have found a way to control and manage this beast. When you having attacks and live every day in pain of different levels it is hard to stay focused and positive.

There are days when I feel like I am going backwards and some days when I think I wont last much longer but it always surprises me just how much pain and punishment the human body can endure. Well as long as I stick to the path I am on at the moment I will be fine, the pain and condition is manageable and I will be able to get back out fishing again. Fingers crossed this new year is a new start for me and it doesn't throw up too many surprises. I know i will have tough times and well as good ones but that life. 

Lets just hope most are pain free ones ..........

A month from HELL!! Fed up with doctors and medication.

Once again the cold weather has brought on the cluster attacks. Each year i have noticed a steady decrease in the amount of attacks i have during the colder months but its always the worst time of year. This year has been no different except the last month (November) I have seen my attacks jump right back up and i only managed 2 days attack free through the entire month. I was averaging 3 to 4 attacks per day and no matter what i did to try and abort the attacks nothing seemed to work. The injections just seemed to take for ever to take effect and i found i still had to fight 15-20 minuets of the attack before the injection started to take hold. The oxygen , which has been a god send, although it eased the level of pain, didn't seem to work as well as it usually does. I am wondering if i have done something to the damaged nerves in the neck and that's why the attacks have been so bad.

The problem with having damaged nerves in the neck is that the pain always seems to aggravate the head and this usually ends up setting off my clusters. I have been put back on Pregabilin tablets to see if that will help not only the clusters but also the nerves in the neck. Up[ until the start of November they had started to work well but when the clusters started at the beginning of the month i could feel a constant ache in the left side of my neck, the same side i get my cluster attacks on. This is what makes me think it is the neck setting off the bad attack. Now the month has gone and ii have started taking it easy the attacks seem to have eased and i am starting to get a couple of attack free days. I wish they were also pain free but the back and the neck has put stop to that and i find that every day i end up suffering some kind of pain but i have become so used to it now it feels normal. 

During the summer months i usually get the doctors to reduce my Injection script as i don't need so many and the ones i don't use end up going out of date as they have a short shelf life so instead of wasting the medication i usually only have what i need when i go to the chemist. Well this caught me out this year as the doctor reduced my injections down to 20 (10 days worth) so when the month started, half way through i ran out of injections and no way of getting more. When i tried to ring the doctors for an appointment they told me 2 weeks minimum waiting. By that time the month is over and a waste of time. The doctors have gone downhill over the last 10 years. You no longer get a regular doctor that deals with you, now days you get to see who ever is available at the time and hope they know about your medical history. If the don't they tend to fob you off saying they don't want to interfere with the treatment from the Neurologist and are reluctant to help you unless you have something in writing from your specialist. It is really becoming a joke as no matter what problem you go in for the doctor no longer deals with it and refers you straight away. Then you have a long wait for an out patients appointment at the hospital.

The amount of times i have gone to the chemist to collect my medication, as it is monitored on a weekly basis due to the type and amounts of medication i require, and have been told the doctors haven't even done the script and the medication is not ready is just crazy. Then you have to keep going back and fore until they manage to get the script from the doctors. Last time it took 3 attempts and a phone call to the doctors complaining just to get my script from the chemist. Its really starting to get me down and become problematic as its very painful walking back and fore the chemist several times in a day, especially as you have to walk up a big hill each time to get to the chemist. The doctors attitude... we are busy ......and they just don't care. When i explained to the one receptionist on the telephone that one of the medications was time sensitive and i would end up going into bad withdrawals her replay was "sorry nothing i can do, come back after the weekend" They were actually willing for me to suffer full on withdrawals for the entire weekend. Not only is the impossible for me to do it could also put me in a bad way in hospital and possibly even kill me. I just couldn't imagine going through withdrawals and dealing with full on cluster attacks at the same time. Thankfully my chemist is brilliant and he got on the phone and explained the medication and the problems with them and made them sort the script out that day. This is now the 4th time this has happened and the chemist has had to sort it out. You would think the doctors would be a bit more professional and careful with this kind of medication.

I have been told a few times to change doctors but when there isn't many choices and you are reliant on strong medication on a daily basis its very difficult to mess about changing surgeries etc. So all i can really do it bite my tongue and bare it. I promised myself years ago that i would fight this condition until i take my last breath and would not give in. The trouble is as time has gone on and things have become worst it seems like i am getting less and less help from the doctors and that they just no longer care. It makes me feel that as they know my condition is not curable and there is nothing they can do to help me I have been swept under the table and all they now do is appease me when i go for my checkups just to keep me quiet. When i complain about my back, neck or clusters all the doctor does is shrug her shoulders and say " Just take one day at a time" WTF! I really don't know how much more i can take. At the moment my mental health is at its lowest its ever been due to all the problems with doctors and medication i have been having. I no longer see any light at the end of the tunnel and i now feel like i am lost and don't know what direction to take.

The one and only thing that has been keeping me sane all this time is my fishing. trouble is in winter because my attacks getting worst and the pain gets stronger due to cold weather I don't manage to get out fishing as much as i would like to and this does take its toll on me.  For the first time in my life and since all this began years ago i can honestly say i am STRUGGLING! Fingers crossed its starts to improve soon as i really don't know how much more my body and mind can take;.

The beast returns same time each year.

Once again the cold weather returns and the frosty mornings become regular so do the cluster attacks. I don't know why it happens the same time each year but for some reason as soon as the temperature suddenly drops and autumn give way to winter the beast returns and the attacks become unbearable.

The same time every morning you are woken suddenly. Usually between the hours of 2am and 3am your eyes open and you are wide awake. You don't even feel tired and after several seconds you realise what's about to happen and the the pain suddenly appears and shoots through your left eye, over the top of the head and into the left side of your neck. The pain level is so high it makes you feel sick and woozy. You struggle to get your balance and make sense of what's going on around you. All you can do is focus on the pain and everything else seems to fade into the back ground.

It doesn't matter how many of these attack you have, you can never get used to the level of pain you get from the condition. It's also hard to except at times that nothing can be done to help you. Ok they are using medication to suppress the attacks and hopefully stop you having them but this will result in medication for the rest of your life as there is no way of getting rid or fixing the problem permanently .

 The attacks can return at any time for no reason at all.

The last 2 to 3 years I have been able to throw myself into my fishing and was using this as a way to excape the pressure and issues when having the cluster attacks. Having a tent and bed on the bank where I can go lay down and deal with my attack and then return to fishing meant I had a sport and activity I could concentrate on. When the issue with the nerves in my neck and back had become damaged I have noted that I am now getting out less due to the back in pain all the time. This is starting to effect my health and mental health as I haven't been out fishing as much as I would have liked. Being stuck indoors all day because you are in pain and don't really want to go out walking causing more pain and discomfort. You end up in a rut and it's hard to break free.

I am really going to make the effort next year to get out much more and even if I have to ask people for help to get me back out on the bank I will just have to swallow my pride and just ask people to help me with my gear and help get me to get out and about.  I am hoping now once winter passed and the weather breaks the attacks will again reduce and I will get my pain free days once again.

Cold weather brings on more attacks, fingers crossed medication will help!

Once again as the colder weather approaches and we see the first frosts in the mornings the beast follows. It doesn't seem to matter if i have been attack free all summer, as soon as that cold nip is in the air it effects the left side of my face and triggers the clusters to begin. Its weird being a chronic i have never managed to find any sort of patter apart from the fact that they will always start to get worst at a certain time of year when the hot weather is pushed out by the colder seasons. Weather seems to play a huge part in my triggers as i have noticed when ever we have a low pressure patch above us i can feel it on the left side of my head like pressure pushing down on my face. In one respect its handy as i seem to know when rain or a storm is approaching but it can be annoying at the same time as i know i will have severe attacks at any moment. My attacks are still lower than they have ever been but i am still having to deal with them on a daily basis weather its a full cluster attack or just shadows which can be just as depressing as the attacks themselves as it feels like an attack is trying to start , constantly , all day long yet nothing actually appears. I have discussed this with my Neurologist and we have decided to try a low dose of the Pregabilin tablets once again to see if this will stop the small amount of attacks i am still getting. Anything is worth a try as i know as winter comes in , the attacks will become unbearable once again.  

I am still dealing with the damaged nerve in my neck and my back on a daily basis. i know its going to get even worst over time but the longer i can try and deal with it with out the use of strong medication the better i will be in the long term as when i really do need to take the medication i wont have built up a tolerance for it over years of taking the same tablets and they will work better for me. I have to start thinking about long term management of my conditions and especially medication as taking tablets or different medications for a long period of time is not good for anyone. I am actually coming off all medicines that i don't HAVE to be taking as i feel the doctors were just prescribing things just for the sake of it. The doctor agreed there were 4 or 5 different things i didn't actually need to be taking so this is a good start. The less i have to take now the better i will be in future that's for sure. I am also coming of other stronger medication but this has to be done very slowly over a period of time as the body can react very badly to withdrawals so we have to be careful. When i am off these i will be left with only 1 or 2 medications i will have to take for mood and cluster management but that will be it. we will then be able to make a long term pan management plan as the nerve and the back gets worst over time.

Things have been looking more positive lately as i have been managing my condition. it hasn't been easy at all, far from it, its been a hard struggle but i have managed to hang on in there,. The pain levels in the back when just walking or standing is bad enough. When moving about you feel like screaming in pain but don't as you feel embarrassed so tend to hold it in and hide away the pain so no one sees you suffering.  I have tried concentrating more on my fishing this year but even on my fishing trips i have found my self suffering with the back and the neck making everything hard work. Despite the pain i will never let it stop me from going fishing and doing the only sport and outdoor activity i can do now days. My fishing is the only way i hold on to my sanity. I am hoping with the introduction of the Pregabilin tablets it will mean i can get out and do some winter fishing this year despite the cold getting to my back and neck the pregabilin should help ease the nerve pain and keep it at manageable levels, Fingers crossed.!  

Changed from daily to monthly blogging as pain all the time gets boring!

Those who actually follow my blog would have realised by now that i no longer do daily updates and leave it to do a main monthly one. the reason behind this was it was becoming boring and repetitive saying the same things over and over again. yes i suffer cluster attacks and yes its more pain than the body can actually handle and its a condition i wouldn't wish on my worst enemy but when all you have to say is pain , pain and more pain again and again it does get a bit boring. I suppose that is why i couldn't find many blogs about CH sufferers and what they have to go through.

 Its not a nice subject to discuss really when all you can talk about is the pain levels and all the medication trials and errors you go through trying to manage the condition. It got to a point with myself where i have had so many bad reactions to medication whilst experimenting with the neurologist to fins something that would manage my condition i have had top put my foot down and say NO MORE! It made me so ill i felt as though i was dying from being poisoned all the time. Its bad enough having to suffer the condition with out extra problems added from medication.

My condition has become to a stage where there isn't really anything more can be done until they see how bad it will become. The damaged nerves in my neck and back will eventually cause me mobility issues where i will have to get aid and the hernia alone causes daily living problems as it is. The clusters have become manageable at the moment but could change at anytime especially as winter comes in so i have to choose a medication that i can live with the side effects. The rest will have to wait until i can get off all the crap medication the doctors have had me on as i have demanded a clean sheet and a fresh start instead of filling me full of pills and medications.

 12 different medicines per day is crazy and asking for trouble. No more. We have already stopped many different medicines and i am feeling loads better already. this is the trouble with the new doctor appointment system, every time you ring you see different doctors and they all do different things prescribing medicines to counteract side effects from other medicines that you have been given. this isn't good at all. Finally they have listened and i am now in control and it seems to be helping so far.

Now i have my general medication under control i have an appointment with the neurologists to now re-start the medication to help with the attacks and i will no be able to tell if the medication will help me or make me worst instead of everything causing immediate side effects and making me ill because its conflicting with other medications the doctors have put me on for no. At one point it was become ridiculous i couldn't even take an aspirin with out feeling sick and it was all down to Mebeverine that i had been on for over 10 years that was given to me for stomach and bowel problems. Thank god its over now and i can start to feel normal it took long enough to fins out what was causing it all. 

Thankfully my attacks are at an all time low and i have been able to get out and about a lot more lately. Other than a fungal infection this last week or so that has really knocked me for six i have actually been feeling much better than i have in years. i have been taking advantage of this and getting out fishing and also going for long walks to get fresh air in the evenings just so i am out and about and not locked indoors all the time. The back pain has been a problem whilst walking but as long as i don't go too far and rest every now and again when the back starts to hurt its manageable. I know its going to get worst over time as the nerve gets worst but ill take what i can for now and worry about it later.