Winter Approaches and The attacks Become Regular.

It doesn't matter how many attacks you get and how regular they become you never can get used to the level of pain these attacks bring. A cluster attack is one of the worst things i have ever experienced and i understand why the condition is nick named "suicide headaches". There has been no end of times where the pain level was so high i was actually on the floor , on my knees, head in had praying to god for him to take me, for me to die and have the pain stop for ever. Some people may think you are just being stupid or over dramatic but until they ever experience the level of pain you get regular they would never be able to understand. It has taken a lot of effort and strength to stay focused and keep going despite having these attacks on a regular basis every day and being told i have to spend the rest of my life experiencing the same thing over and over again! I suppose it wouldn't be so bad if there was treatment you could have or there was something they could do but there isn't enough people who suffer this condition in the same way to warrant them spending money on research and treatment. In the USA they have begun research into the condition but there is still very little known about any successful treatments so hopefully as years go by the UK will also start researching into the condition and more and more will be learnt and possibly one day a cure would be found. Until this ever happens i suppose i am just another test subject where they can try different things and hope it works.

As the colder weather has no started approaching us , especially during the early hours, i am seeing an increase in the amount of attacks i hare to deal with and finding myself with less and less pain free days. The cold weather being one of my main triggers is really a pain in the backside (or head) excuse the pun. It means that during the winter months i can't really go out as much as i could during the summer months, not that i get outdoors much now days anyway. Since the condition turned chronic for me i haven't really been able to get out much due to having regular attacks but at different times in the day . There is no warning of the attacks so i can't even plan in between bouts. It's not helping that  i now have other health issues such as the hiatus hernia that causes me constant chest pains and chocking on my food and drink regular. I have just had an amazing appointment with the Gastroenterology specialists who have informed me that there is nothing more they can do for me. They an't operate on the hernia due to the position of it and i am on the correct medication i need to be on. So again its another condition that i will have to change my lifestyle and learn to live with. A pattern is starting to emerge as it seems lately i have things going wrong and when they do there is nothing any of the doctors or specialists can do to help me. Its really starting to become annoying and very depressing.

My walking is still very bad and if anything is getting worst each week. I can no longer walk more than 30 seconds wit out severe pain up the back of both of my legs start and then spread to the entire legs and up my back. Across the base of my back like a line and also up the left side of my back and into my neck. This pain is really bad when it starts and i have to take the weight off my feet and back before it will start to ease, Even sitting in one position for long periods of time is becoming more and more painful and i really don't know what to do. I have been back and fore the doctors and they are stumped! They haven't a clue what could be causing it. They say its possible i have a damaged nerve in my neck and that's whats causing all the other pains down my back and down my left arm. i have had an MRI on my neck and spinal cord at the top to see whats going on as my neck is in constant pain all the time. They still haven't had the results back so its a frustrating wait to find out if anything can be done. If they tell me i have another problem that they cant help me with will drive me over the edge. I know i have a problem in my neck and i know its effecting my walking and daily life but as to how bad the problem is i just don't know at the moment.

So much for pain free days, my pain free days are days with out attacks as i still get pains from my back, legs neck and chest during these days. I have actually forgotten what it is like to have a day with out any type of pain at all. if i did i think i would end up in shock or panic there was something wrong if i couldn't feel the pain. When i set out to fight this condition with every ounce of strength i had i didn't realize just how bad things would become at times and didn't realize i would end up with several health issues. I didn't know what else to do, i didn't want to lay down and give in thinking WOE is me and wanted to try and get on with life as normally as was possible. This condition has taken my life away from me , i don't go out, i cant socialize, i cant visit friends due to fear of having attacks when out and about. I can't have a relationship and women get to scared of the condition and then when they look at me , what future would they have with someone who is chronically ill most of the time. Cluster Headaches as they are called are not just a normal illness or condition as it strips you of all the quality of life you are used to when growing up and living normally. It destroys your self confidence and makes you live like a hermit afraid to go out in the cold air in fear of attacks coming. This illness is one of the loneliest illnesses i have every known.

No matter how bad things get i always try and say to myself there are people out there worst off than you , people who don't have long to live due to terminal illnesses and at least i have a life. Even though, i do wonder sometimes if this isn't worst than being in prison for life sentenced to death by slow painful suffering. All i can do is just to keep on pushing through, when i feel down try and find things to pick me up, when i am in pain just try to deal with it as best i can . I still have my fishing , even though i don't get out as much as i would like to. At least its something to keep my mind off my illness and something i can look forwards to. Being on the bank of a lake or river, watching the world go by, listening to the water and the wildlife whilst waiting for the fish to bite is my little piece of heaven and something i can still hold on to.  Even with the colder weather now arriving and my attacks increasing i can still get out and do a bit of fishing, if the beast attacks i can lie back in the bivvi, take my injection and wait for the pain to end and then just carry on. No one can see me in the bivvi so having an attack on the bank doesn't bother me but i would still rather be fishing with out pain. Lets hope i can get a few trips in before the weather really becomes to cold to do anything.

Winters knocking at the door, and with the cold weather so comes the beast!

Its that time of year again where the weather is now turning very cold in the mornings and warming up in the day. Autumn is a very strange time of year with the weather and an extremely frustrating time of year when it comes to my condition and the cluster attacks. The early hours always wake me up with the cold bite on the top of the head as the temperature drops and suddenly the beast attacks. The same thing happens each time with the pain starting just above the jaw and below the left eye and then suddenly spreads upwards behind the eye and over the top of the left side of my head into the back of my neck. The attacks comes on so quickly you have no chance to prepare yourself and all you can do is either dive for your injection and pray it aborts the attack or just have to ride out the pain for over an hour each time. No matter how many hundreds and thousands of attacks i have had i still cant get used to them and they always feel as though they are stronger and a lot worst than the ones before. Having the cold weather as my main trigger makes life hell when winter comes and it always starts the same time each year just as the autumn morning chill arrives my attacks increase.

This yea we actually managed to get my attacks down to half what i normally get and having at least 2 or 3 days being attack free. This was great but unfortunately due to all the other health problems i have been having these days are no longer pain free days and if i am not suffering from cluster attacks i am suffering from pain from the hiatus hernia or the damaged nerve in my neck and down the left side of my back. This all topped of with severe pain across the lower back when i walk and up both of my legs. I have had a scan to see if there are blood clots and all those were clear and my circulation is fine. I have had tests on my heart due to severe chest pains and have been told the heart is fine but they are worried about my level of cholesterol and possibility of angina so i am now waiting for a heart scan and my next appointment with cardiology. The hernia and the problem when i eat and drink is becoming so bad and giving me so much pain each day its becoming a real problem but thankfully i have my appointment a week Tuesday so hopefully we will get something sorted or at least start treatment to help solve this issue.

I have had my MRI scan on the neck to fond out what is going on with the nerve and the pain i am getting down my back and the trouble when i walk but i have to wait for the results. I will no have to book an appointment with the doctor to find out what it is, the extent of the damage and what can be done to help ease all this pain all the time. I am very reluctant to start taking any kind of strong pain killer as i have been down that road before and it lead me into big problems but there is no way i can live my life with all this pain all the time. Cardiology was very concerned at the rate my heart is all the time due to pain and was discussing putting me on medication to slow the heart down as they said i just cant go on like this. Not that there is much i can do about it except wait for appointments and treatment. It just seems as soon as they find out what one thing is something else comes along and makes everything more difficult and harder to diagnose a problem. Ever since they started experimenting with different medications to get the clusters under control my health has rapidly gone down hill. I just wish for once i could catch a break.

Once again i have had so many different problems with my health my mind has been so occupied

Once again i have had so many different problems with my health my mind has been so occupied i had forgotten to update my blog. Again i have been having problems whilst walking with pains up both of my legs. i have had numerous chest pains from the nerve in my neck, the hiatus hernia and now suspected angina which i am still unconvinced i have. Not to mention the early morning wake up calls from the beast and the cluster attacks i get on a regular basis. We have managed to get the number attacks down by half over the last 5 years of treatment but i am still no averaging between 2 and 4 attacks each day with only 2 or 3 days in a week staying attack free. Even though i do get attack free days unfortunately due to all the other issues i have going on they are no longer pain free days.

I am once again waiting for an appointment to try and investigate the pains in my legs and due to go for an MRI on my neck and spine for the trouble and pain in my neck ,left arm and chest. They have asked me to attend the x-ray clinic on Sunday morning so they can get the scan done and thankfully tomorrow i have my appointment with cardiology so we can check the angina and rule it out as i still feel its all down to the nerve that i am getting chest pains and pain down my left arm including numbness.  When i get these pains its strange how all my energy drains out of my body and my heart rate increases o much it feels like its trying to burst out of my chest/ When i had an ECG at the doctors it showed an abnormality in the left atrium but i am not convinced its the heart or angina.  Something tells me its all to do with the nerve damage or a trapped nerve in my neck and something is going on with the neck that is causing these very strange symptoms,

Its strange , but ever since i had the hiatus hernia weird things have been happening with my health. i am getting reoccurring infections, strange rashes and spots over my body and hands, oral thrush that keeps coming back even after intense treatment. Strange pains when i eat or drink not to mention my food and drink trapping all the time and almost choking me. Since the hernia started to play up and cause these problems i have watched my health go down hill rapidly and no matter how much i try and fight these things it just seems to make it worst. It makes me wonder if its not ALL caused from the hernia and side effects of ,medication i am on. As they do say the hernia can cause you to become allergic to things you have tolerated all of your life and make you react strangely to different medications. It would also make sense why none of the doctors seem to know what on earth is going on with me apart from the main illnesses that i have. 

When i was told that i had a rare condition that there was no cure and very little treatment for and that i would have to learn to live with it for the rest of my life i never once thought i would be fighting all different types of health problems and i would be going through so much pain and anxiety all the time not knowing what on earth is going on with me. I try and keep a happy face and hide what i am going through with other people around me but there are times when i just wonder how much more of this can i take. if its not one thing its another and as soon as we start to get some answers something else comes along and throws a spanner in the works, so to speak.  I just wish i could catch a break and finally know whats happening and get the treatment i need so i can at least live comfortable and live some kind of life. All that's happening at the moments is pain and more pain and constant struggle with my moods and depression due to all the things going on with me. 

winter is now approaching quickly and i have to start preparing for the constant visits from the beast. the cold weather is when my CH condition becomes uncontrollable and at its worst. Constant attacks every day just from the cold and non stop pain and agony when moving around the flat. I am praying to god this year will be a mild winter so things wont become as bad as they have in previous years. At the moment i have noticed more attacks in the early hours due the temperature dropping between midnight and 4 in the morning. This temperature drop instantly triggers an attack and there is nothing i can do to avoid it. Also as winter comes so does more low pressure weather which in turn triggers my attacks i don't know why low pressure seems to be a trigger it must be something to do with the pressure on the brain and head. All i do know is during winter we get a lot more of them and that results in a lot of pain for me to deal with.