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. 

The beast from the East brings on attacks…

For a short while I thought I had got off lightly this year having so few attacks and the winter being so mild. Like most of the country I wasn’t expecting such bad weather to suddenly hit us and when we had the first lot of snow my life suddenly became hell. The attacks started from the first day of the cold weather and just didn’t let up. I was experiencing what I call “shotgun attacks”. These attacks come in bouts of 2 at a time. You have the first attack and depending on if you take your injection or not have to ride it out only to get the second attack kick in roughly 5 top 10 minuets after the first one. Even after you take an injection and it aborts the first attack you think you will be ok for a while but it still happens and the second attack appears.

Being a chronic sufferer is testing at the best of times but this latest bout of attacks reminded me why this condition is one of the worst known to human kind. You sometimes forget just how strong pain can get at times and after several attacks you realise just how much it takes out of you each time. At the start of the day you feel energetic and ready to face what to day brings and by the end of it, after experiencing 6 to 8 attacks you wish for peace to come and an end to the attacks. I understand more now than ever before why they call them “suicide headaches”. It bad enough someone should end up in the mind set that they want to end their life but when your having an attack all you can think about is stopping the pain and everything crosses your mind including death. I do sometimes wonder just how many people who have been miss-diagnosed or suffer in silence with the same condition experiencing the same attacks. If I hadn’t of known what was happening to me and that the pain will eventually stop and hadn’t been educated about the condition I really don’t think I would be here today.

Now the second lot of snow has hit us and we are experiencing the worst winter for quite a while the attacks have returned but thankfully no where near as bad as the last lot and I have found them manageable. The cold is defiantly what is triggering the attacks and even though you try your best to keep warm and stay indoors the weather still manages to have an effect on you. My heart goes out to the other cluster sufferers during this weather as I know what they could be going through and just how bad it can get. All you can do is try and keep a positive mind and remind yourself the attacks will eventually end and you will get a break but its easy to say that now when not having the attack. Thank god the nasty cold weather isn’t going to be around as long as the last lot and we should see a change ion the weather and everything start warming up within the next week or so.

The beast continues, new type of attacks.

After suffering cluster attacks on a chronic level for years I though I had experienced every type of cluster attack and every possible level of pain they could bring with an attack. How wrong I am! Usually when an attack happened you get the usual pain behind the eye , above the jaw and over the top of the head into the neck. just lately these attacks have been aggravated by the sudden changes in weather we have been having and now a new style or type of attack has arisen.  When you have the attack you still get the same unbelievable level of pain and agony but now you become frozen on the one side of the body.

I believe it actually the damaged nerve that is playing up and causing the weird and scary feeling of the left side of my body suddenly turning to ice. You become completely numb on the one side for several minuets after the full cluster attack eases off or the injection you take for it takes hold. I know the nerve was causing attacks and making them worst but now its seems like the nerve has joined in with the attacks. I am also getting some very strange side effects also down to the damaged nerves in the neck and the clusters. My eyesight has become a lot worst than ever before when having an attack and where things were still readable before now when I have an attack I cannot focus on any writing what so ever.

Its really strange this happening as at first I thought it was old age and down to the fact I would probably need glasses as I get older. the trouble is every time I go and have my eyes tested I go when I am feeling well and the clusters don't play up so I am able to see just fine and am told there isn't really anything wrong with my eyesight other than a slight bit of long sited-ness when trying to read really small print.  It wouldn’t really surprise me if I did need glasses eventually after all the work I used to do sat in front of a computer screen but thankfully they are just fine and only cause problems when having attacks.

Like most other cluster headache sufferers the cold weather is one of the main triggers for my condition and winter is a real nightmare when it comes to trying to live a normal pain free life. I haven’t been able to get out much due to the attacks always being set off by cold wind blowing into my left eye and the cold weather getting to my lower back and damaged nerve in the neck. Now that the warmer weather is slowly starting to arrive I should see myself getting out a lot more than usual and soon will be on the bank fishing again. This year I am planning on getting out fishing at least once a week so I can get plenty of fresh air and exercise as this is the only thing that helps me manage the clusters. Lets hope all goes to plan.

start of a new year the beast returns with vengeance

Well January never seems to disappoint when it comes to cluster attacks. Same time every year, when the first morning frosts begin so does the attacks. It doesn’t matter that the amount of attacks in general has reduced and the last year has been the best so far when it comes to the clusters as every January and start of a new year the beast returns with vengeance. It doesn’t matter how many attacks you have you always feel that once the freezing morning appear so does the highest level of pain. The attacks seem so strong at this time of year. I am sure its got something to do with the body feeling pain more in cold weather. Even though I know they cannot get any stronger than they already are they always seem to be the worst attacks I get all year.

The worst thing about it is the extra pain I am getting this year from the damaged nerves in the left of my neck and down the left side of my back. Every morning when I wake up I have to go through agony just to get out of bed and dressed. By the time you manage to get into the living room and sat down you are covered in sweat from the pain. This is made worst when I starts to aggravate the neck and head and eventually sets off another cluster attack. All you can do is take a few pain killers and hope it doesn’t get any worst. I knew winter was going to be a challenge this year but I didn’t realise how bad the pain would be and at what level the pain would be constantly. When I told the doctors I would learn to live with and manage the pain rather than risk mobility by opting for the cervical nerve root block I didn’t realise it was going to go this bad so quickly. I thought I would have had at least a couple of years before the pain got so bad I could no longer move. Again I think its only become this painful due to the cold weather as I have noticed when I keep my flat hot all day with the heating the pain is a lot less.

I have been using heat treatment a lot during the winter months on the neck and the left side of the back. I have also found that by placing a hot cushion around the back of the neck whilst having a cluster attack helps to ease the level of pain. I don’t actually believe it does anything to the pain , it just helps you to focus on something other than the attack and that in turn helps to manage the pain level. When i first starting having cluster attacks, before I knew what they were, I used to hold my face close to an electric halogen lamp heater. I used to place my face close enough to heat the face up so the heat matched the level of the pain and then slowly moved my face further away so the heat slowly reduced and found that the pain would slowly reduce with it. I know this sounds crazy and I could easily have burnt my face but at the time I didn’t care due to the amount of pain and was shocked when it actually worked to ease the attack. Its not something I do now that I know what the attacks are and how to deal with them but makes a good point on how hot and cold can effect your attacks and how being cold can make your attack seem 100 times worst.

I am grateful that this winter has been a mild one despite the cold weather as I haven’t had anywhere near the amount of attacks I usually get. This is a good sign as it means this year should be a good one and I should hopefully find myself out of the flat a lot more. I have my fishing to get back into and have lots planned for this summer so I am praying my clusters will behave themselves and continue to reduce in number. I am also hoping that the nerve sin my back and neck will begin to ease when the warner weather comes as its really uncomfortable and annoying at the same time. Even sat doing nothing the back is constantly aching. Fingers crossed things will improve soon.