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i usually get the doctors to reduce my Injection script as i don't need so many and the ones i don't use end up going out of date as they have a short shelf life so instead of wasting the medication i usually only have what i need when i go to the chemist.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.

How much more abuse my body can take?

Its been quite a while since i last updated my blog as i have been concentrating getting back into my fishing full time and also sorting out my medication with doctors due to all the side effects i was having when trying new medication. Every time I was put on a new medication to try and get rid of the cluster attacks once and for all I would end up having a reaction or the medication would conflict with something else i was taking. Now instead of the doctor stopping that medication they just throw even more medication at you to take care of the side effects of the first medication. This to me is just plain crazy.

The trouble is this new system that all doctors are working under. Where you used to have a family doctor or a regular doctor you would see  they would be able to get a look at what was going on with you and would know your medical history to a certain level and know what other medication and why you was on it. being reliant on computers and not know what exactly they were given a certain medication for or even not having the time to look up what other medications you are on because the surgery is busy means the doctors can make mistakes and also treat it like a separate problem when in fact is caused by a medication you are already taking. You can end up with taking 4 or 5 different medications all for the same problem because you have seen 4 or 5 different doctors over a monthly period. For example just for constipation and stomach cramps i ended up on 4 different tablets & 2 different drinks that ended up messing up my bowels so badly i had serious problems but it wasn't until all the medication was stopped that my bowels returned to normal. This was again all down to the doctors just throwing medication at you.

After having a meeting with the doctors and finally having one doctor address the issue I have been slowly coming off all the different medications that they have been throwing at me and only keeping the ones that i need to live a normal comfortable life. The clusters are at the best they have been for years and that is nothing to do with medication but more down to me learning to deal with the pain in the nerves on the left side of my body, neck and back. By using gentle stretching exercise and stretching along with heat treatment I am now able to keep the worst of the attacks at bay and only have to deal with the ones that are first thing in the morning , the early wake up call from the beast at 3 am, and the ones cause by aggravation from the nerve in the neck when the pain level is high. I am hoping by coming off all the medication that has been causing me issues I will be able to try some of the ones given to me for the cluster attacks again as i wasn't convinced it was them that were causing the problems and i knew deep down it was different medications conflicting with each other that was the issue.

Fingers crossed we are right when it comes to the conflicts and side effects of the medication and once i am off all the trouble makers i can finally get the treatment i need to be on for the clusters and hopefully these attacks will be a thing of the past. I am grateful that i am getting a lot less attacks at the moment and i am grateful that i have the injections and oxygen that help to abort the attacks when they appear but it would be nice to get to a stage where i can start to see some quality of life returning. It has been a difficult struggle getting to where i am today and its not until i look back and read through some of my blog entries that i realise just how much i have had to endure and put up with since i was diagnosed. I also wonder just how I am here today with everything that has gone on and how much more abuse my body can take as it is starting to show signs.

Nothing better than spending your time out in the fresh air

I sometimes wonder just how much pain the human body can endure at any one time. Its not enough that I have to put up with the cluster attacks on a regular basis. Now, because of the damaged nerves in the left side of my neck, I am having to put up with daily pain up and down the left side of my back. The worst bit about this pain is that it resembles tooth ache but in your bones and down your side. This is the only way I can describe the constant annoying throbbing and ache. Its so annoying it can drive you insane and by the end of the day you just don’t know what to do as it just never seems to stop.

Ok some days are better than others as it does seem to flare up when cold or wet weather is around and you do get days where the ache is only a little one and you can put up with it but then come the days where you just want to dig a big hole and burry yourself as it just wont let up for 5 seconds. At least with the cluster attacks you know deep down inside the the attack will eventually stop and you will get a chance to recover. With the back pain I don’t think I can remember the last time I wasn’t experiencing some kind of agony in the back. It’s so easy to grab some painkillers and ease it off that way but my experiences with medication hasn’t been god so I am trying to manage the pain with the use of heat treatment, massage and stretching. If that fails then and only then will I reach for the pain relief.

The good new is the attacks have really dropped to an all time low and I am now getting a lot more Cluster Free days than ever before. I am a bit concerned that the cluster now seem to be set off from the pains up the back and in the neck. Its as though the nerve pain is aggravating the clusters and setting them off. I have found on my bad back days I end up having several cluster attacks. I am convinced if I can find some way of managing and easing the back pain and neck pain I can get the cluster attacks to decrease even more and possible return to being an episodic sufferer instead of a chronic.

Best bit of all is that I can get out and about again and am no longer shutting myself away from the world due to being in pain all the time. I have found that I can get out on the bank and go fishing with out being in too much pain so its full steam ahead this year. The last couple of years my fishing had to take  a back seat whilst all the problems were being investigated and having to find the right treatment. Now things have settled I can now concentrate on getting back out and fishing again. Nothing better than spending your time out in the fresh air doing something that you love. I am just hoping the back and neck will behave itself tis year and that the treatment will do the trick and keep the beast at bay.

Less attacks means more time outdoors and more fishing time for me

Once again i have left updating my blog for a while on the hope that things started to improve and i wasn't just continuously repeating the same old attacks and pain all the time. i had hoped that with the decrease in the amount of attacks i get i would be able to write more positive reports on how my health has been going. I have found with the amount of attacks now at an all time low i have been able to get out and about a bit more than normal and even managed a quick fishing trip despite my back causing me loads of pain. The issues with the back and the nerve down the left side of my body seems to be the main issue now. 

The pain across the lower back area is getting worst slowly and as each day goes by i can feel more and more pain and soreness building. I can't find anything that could be causing the pain itself. I have checked the area and down the right side of the back and spine there is no marks, spots or lumps and nothing that would say there is a bruise or something that could cause the pain. When  touch the area the pain shoots up and the skin is very tender. On the left side i have the small lump that moves around and would have thought that would be in more pain that anything else but it doesn't seem to effect the area of pain.

I can move the lump around and it doesn't seem to cause any worst pain or make it increase when touching the lump. Its very strange as to what is causing this pain and it could be down to the damaged nerve but so far i haven't been able to find the cause. Even when i walk about the back doesn't really play up until i stop moving and then suddenly the area becomes very sore and tender. Then when i try and bend or sit down i get shooting pain up the spine from the area of the pain on the lower back. Very strange indeed. The other problems i am having with the nerve are mainly from the damages in the left of my neck and cause me a lot of neck pain which can in turn aggravate my head and cause cluster attacks to develop. 

Having to put up with pain is nothing new and has become part of my life. I don't think i can remember what it feels like not to have some kind of ache or pain going on. One thing is for sure I have had less attacks so far this year than ever before and i am praying it continues like this. I am just hoping that my back will start to improve a bit and the pain will ease as the warmer weather now approaches. Less attacks means more time outdoors and more fishing time for me. So fingers crossed everything continues to improve.