Another early morning wake up call to remind me of my condition.

  I have started to wonder just how much damage to my body theses clusters have caused or there is from the thing that caused the clusters in the first place. The reason behind me wondering this is the amount of problems I have been having with the left side of my body and the nerves. It just seems as time passes and I learn to deal with one thing something else comes along and starts causing me problems. I have been getting a lot of chest pains again and I assume its the hernia and the nerve both playing up at the same time but even though I know what it is it doesn’t stop me worrying all the time.

  The clusters seem to have dropped right down ever since I started to manage the pain in my neck and back. It seems like the neck was one of the major factors in setting off my clusters and why they turned chronic. Sometimes I forget just how painful clusters really are and its not until I get an early morning wake up call from the beast then it reminds me just how horrible this condition is. Again this morning the best decided to pay me a visit after being attack free for almost a full week. Its crazy how they can just appear and start from no where. The level of pain that comes with the attack is something I just can’t describe and I will never be able to manage. It really surprises me how I have managed to go this long with the condition. Not that I have much choice mind you.

  The Hiatus Hernia has also been playing up more than ever before and causing me problems when I am eating or drinking by choking me all the time. Its really annoying as it can happy at any time and more than once. All you can do is rub your chest like crazy whilst swallowing over and over again until it suddenly pops through. One of the most horrible feelings you can imagine. It worry's me that one day I wont be able to get it to pop through and then I would end up chocking. Until that happens there is nothing I can do other than make sure I take my medication and just deal with things when they happen.

  The nerve damage on the left side of my body has been causing me a lot of pain also and when I walk I am in agony. I try not to show I am in pain when I walk as I have started to get a bit fed up with people seeing me in agony and out of concern asking what’s wrong. Its not that they are doing anything wrong, far from it, its nice to see people care, but you get so fed up with explaining the same thing over and over again. Its the same thing every time I go to the hospital. It’s not like they don’t have your entire medical history on a computer in front of them but because they don’t have time to read every ones records completely you find yourself having to explain things over and over.

  I haven't really managed to get out much the last month as the pain in the back has just been too much to deal with so I haven't even managed to go fishing. I need to get back out on the bank soon as I am having fishing withdrawals so I am going to have to arrange something before I loose my mind.  It’s weird as when I am fishing it’s the only time my illness doesn’t play up and doesn’t bother me. Maybe because your mind is focused on something other than your health and the fresh air helps to relax and regenerate the body and mind. What ever is the reason it works. Fingers crossed the cold weather doesn’t come in to quick this year and i manage to get out before Christmas.

Strange things Happening!

Its starting to become very clear that i am not going to fix or get rid of the nerve problem i have in the neck not to mention the problems i am getting down the left side of my back. I was hoping that once i started treating the damaged nerves and learn to manage the pain it would get better and i would be able to cope with the problems but in fact the opposite is happening. It seems like the more time passes the worst the problems are becoming. I have now woken 3 times where i have though i had a stroke in my sleep and the entire left side of my body is dead and numb. Not being able to move half of your body when you wake up is very scary and when it takes a good 20 minuets to return the feeling its worrying. 

This is not the worst thing that happens. The scariest thing of all is not when it goes dead but when the entire left side of my body including my head suddenly freezes. When i say freeze i mean frozen! Its as though someone has put the half of you inside a freezer and you feel like its icy cold and again numb. As the cold spreads slowly over the entire left side of the body you start to panic and start rubbing your limbs vigorously to try and warm then up and get feeling back but nothing seems to help you just have to wait until it returns on its own. Even though i know its only nerve damage that's causing it it doesn't really help to calm the situation.

I am grateful that the clusters seem to be staying low at the moment and despite the weather changing and the cold returning they seem to be staying at the rate i get through the summer which is great news so far. I am just praying as the freezing winter winds start that the head remains calm and behaves itself this. i know they will get a little worst as the winter chill begins but hopefully if i manage the pain like i am doing with the neck it shouldn't be too bad this year. One thing i have found is that by managing the neck and stretching the nerve when it feels stiff and using heat when its in pain it seems to have stopped triggering the clusters. I am now wondering if it was the damaged nerves in the neck that is responsible for turning my clusters from episodic to chronic. 

The lump in my back on the lower left of my spine moved and started touching the spine and causing me even more problems and pain than i already get. The last thing i need now is something else to join in the constant torture but it has and now it looks like i have to have it removed. It was supposed to be happening the other week but there seems to be a complication so i am now waiting on some scans to come back and for the specialist to decide if its operable or not. The last thing i need right now is a another problem that they can't do anything about so am am praying they can this time. It seems to flare up and some days are really bad where i can't walk properly and other days i don't get much problem from it. When they did the initial scan to see what it was they told me it was a fatty lump. Now they don't seem to be so sure what it is. All i know is i need to get it sorted soon as i have been missing my fishing and have been unable to go out until i know whats happening. Fingers crossed it will all be sorted soon. 

Reduced attacks but still everyday pain.

Once again I have been holding back on my blog hoping for a miracle I suppose. Since I was diagnosed with the damaged nerves in the neck and back and started to understand how it was effecting me and how it aggravates my clusters, I have noticed a huge decrease in the amount of cluster attacks I get. By learning to manage the neck and back and the pain that it brings I have found that it has stopped triggering my cluster attacks on a regular basis. The worst part of it is that instead of getting a few attacks per day with the odd day pain free, I am now finding that I am getting the attacks in bouts.

When they start I don't just have the odd one or two attacks now  I get a string of them in a row. Sometimes I can have 8 or 10 attacks all in one day and then it can stop for a week or so and then start again with another bout with again a high number of attacks through the day. I don’t know why they have changed like this and maybe its just the normal coarse the attacks take but for some reason it seems like they have become stronger than before and even worst pain (if that’s at all possible). I have also noticed that I am struggling to stay on my feet all day as when I do I find myself in a lot of pain up the left side of my back.

I know the pains in the back and down the leg and across the chest are from the damaged nerves in the neck so I tend not to worry so much when the pain comes but I can’t help becoming nervous and scared when the chest pains start and I get that sharp pain over the top of my heart. I know deep down its not my heart but it still scares the living daylights out of me each time it comes. I am using gels and pain relief but this doesn't seem to touch it and I can’t take the stronger pain killers so I have to ride the pain out each time it comes. Something else I noticed also was when I have a cluster attack and have to take my medication (injection) not only does the injection stop the cluster attack in its tracks if you take it quick enough but it can also help ease the nerve pain in the back. unfortunately I can’t take them for that reason and only being allowed 2 in any 24 hour period means its not a viable solution to all the pain.

Every time I make an appointment and tell the doctors about the pain and what's going on they always refer me to cardiology thinking it can be the heart and after loads of tests they tell me its not the heart its nerve and muscle pain, then they seem to forget that's what the issue is and I don't need the heart investigating I just want to know why I am getting the pain and why it wont go away and keeps scaring me. I feel it has something to do with the Hiatus Hermia but they never seem to investigate it further to see what's causing it they just say its not the heart , all is ok and send me on my way to continue to suffer with the pain and problems.

It’s great that I am now getting more days with out cluster attacks but I have lost the pain free days altogether. I no longer get pain free days due to the back and neck always causing some kind of pain and discomfort. I am sure it is the nerves in the neck that actually caused my clusters to turn chronic. I think I would have stayed having the odd couple of attacks every 4 to 6 months if it wasn’t for the nerves in the neck becoming ultra sensitive and being damaged by something. I think the nerve pain is what was aggravating my clusters and now I am managing the nerve pain it seems to be working and the attacks have really decreased but its still way too early to tell. Winter is just around the corner along with the cold winds and low pressure so I am waiting to see if winter becomes the nightmare it usually is with the clusters.

The early morning attacks return!

Once again the early morning wake up call from the beast has begun. i don;t think it can be from cold weather as we are in the middle of summer so i can only assume it has something to do with the low pressure and bad weather we have been having or again down the the nerve on the left side of my neck playing up and aggravating the cluster attacks. There has been many times when i actually think to myself have i been miss diagnosed? are the attacks being caused by something else? and can they find it and fix it? but every time i have a full on cluster attack it convinces me that the Neurologist was right and the description of a cluster attacks matches my attack perfectly , right down to the small details such as the body bursting into sudden sweats and the left eye closing and swelling from the amount of water pouring from the eye on the side of the attack. 

The way the attacks begin rare also a clue to what they are and what is causing them. With cluster attacks the pain always starts behind the eye and just above the eye and always spreads over the top of the head. Mine are always on the left side of the head in the same place every time. I actually get 2 different types of attacks. A mild one that i put down to being caused from the nerve damage i have as the pain begins in the back of the neck and spreads up into the head, this aggravates the clusters.  Then the normal attack will start at the front of the head behind the left eye. I have found that problems with the nerves in the left side of my neck have been causing at least 50% of the cluster attacks i have been getting. The second type is the normal cluster attack that always starts behind the eye and spreads up over the top of the head into the the back of your neck like a perfect line. This attacks always comes with sweats, eye swelling, face drooping and so much pain you wish you were dead. Now that i am learning to manage the pain an the nerves in the neck with heat treatment, stretching and pain killers, even though it doesn't stop all the pain and problems i have seen a massive decrease in the amount of cluster headaches that are triggered.

This reduction means i now find myself with cluster free weeks instead of days but unfortunately not pain free due to the nerve problems. The left side of my body is in constant pain from the nerve and my lower back is always annoying me, like having tooth ache in ya lower spine. its horrible, There's not really much can be done other than a cervical nerve root block with big risks so we can';t take that option yet until it becomes so unbearable i can no longer live with it. So for now all i can do is continue practising pain management and try not to aggravate the nerves and cause more pain by doing silly things to hurt my back such as lifting heavy weights and too much movement during a day, i find i now have to pace myself. I am a lot happier now i know what is causing all the problems and am slowly learning to adjust my lifestyle to accommodate and manage the pain but i still find i am not getting out nearly as much as i should or like.

I have managed to get out fishing at least once a month so far since the start of the season. No considering i was hoping to go each weekend its a long way from what i had planned but still a lot better than previous years, there has been time where i only managed 2 fishing trips in the whole year. Not having my own transport is one of the issues as when you have damage to a nerve and have back pain its impossible to carry all the fishing gear to the lake so you need transport. This is something i need to get sorted for next year. The fishing not only helps to keep me getting out and in the fresh air but it also helps to with exercise and especially if you suffer depression as it lifts the moods. I have been lucky as i have some good friends who have all been willing to help and get me out on the bank and are willing to help me get my gear to the lake but sometimes i feel like i am asking too much of people and just try and get on with things even if it leaves me suffering in agonising pain for an hour afterwards, my own stupid pride!

Each time i have a full cluster attack i feel like part of me is left damaged

One day i will be able to start the blog and say i have been pain free for a while, but every time i think i am starting to make some improvement with my health something comes along and throws a spanner in the works. The beast has decided to rear its ugly head after being quiet for 2 months and only having the bare minimum of attacks it has decided that this low pressure weather and rain was the excuse it needed to kick off and cause me some agonising pain. Once again at just gone 2.30 am this morning it started. I had opened my eyes and again i didn't feel asleep, or if i had been asleep it was like i was wide awake wondering why i was awake and then suddenly the pain started. The left eye began to water and close and the pain shot from behind my eye over the left side of the head along the usual path it takes into the back of my neck. Once again i was having a full CH attack.

It doesn't matter how many attacks you have you just never get used to them and they always seem more painful and stronger than the last one. I didn't know anything could feel more painful than the first attack i had but they can and they do seem to get worst. I am wondering at what level of pain will my body actually say no more.  I took my injection to help stop the attack but it still takes around 10 to 15 minuets before it has taken hold properly so you still have to suffer the high level of pain until it kicks in. The trouble with these injections is although they may work they can also cause you to have more attacks than normal. This i have learnt after using them for years, you get what they call  referred attacks, its as though you still have to have the attack all the injection does is postpone it until later, well that's how it feels anyway!

It's really not helping the trouble i am having with the left nerve in my neck and the amount of pain it causes down the left side of my body, especially in the back and left leg. Its making getting around very awkward and i feel like i am out of energy all the time. Within 5 minuets of starting walking i am in agony with my back and my energy just suddenly disappears and i have to rest for a while before continuing my journey. This has only started ever since i started getting pain in my lower back and left leg so i am wondering if its something again to do with the nerve. I have also noticed the small lump in my back has shifted and started to hit the spine in the lower middle of my back and i am wondering f its this that is causing things to play up at the moment. it looks like i have to book another trip to the doctors just to get it checked out again. 

You know one day i will write a blog that's not all about pain and suffering and wondering what next is wrong with me. I am starting to feel like i am turning into a Hypochondriac thinking they are ill all the time except its not me that's discovering problems its the doctors and my body is slowly giving up. Each time i have a full cluster attack and have to ride out the pain and suffering for almost an hour and sometimes longer than an hour, i feel like part of me is left damaged after the attack. Each attack makes more damage and that's what is slowly happening to me. If someone was to say " You are going to have a slow and painful death" this is the sort of thing i could imagine they meant. I am just hoping that as i learn to live with the nerve and nerve pain i will learn other ways to manage the pain and problems and maybe i will be able to get these attacks to stop all together but i know this isn't something that's going to happen over night. I just have to stay positive and pray for the best all the time.

Waiting for better news, will it ever get better! Talk about being fed up.

I was actually trying to leave my blog for a while and post an update when i was actually starting to feel better and my health had improved as i was starting to get fed up with all the doom and gloom, cant help you with this illness, can't help you with that illness, basically i was getting fed up with being told they know what the pain is and why its being caused but we can't treat it or cure it or even help you. OK, you might think i am being a bit dramatic thinking this was but believe me when you have been smashing your head against a wall for over 15 years and when you do finally find out what is causing you all the pain you are told there is nothing they can do or there is no treatment known for it, you start to become a bit bitter. Then when you are told normal thing like hiatus hernia can't be operated on due to its position and its not life or death so they wont invest in the kind of surgery needed, not that i want my chest cracked open, and told i now have a severe re-flux condition and once again nothing can be done about it and i have to learn to live with it, starts to get you a bit mad.

As if that wasn't bad enough i then start having severe problems such as loosing the feeling in my legs, my left side of my body, numbness and sharp pain all over the left side of my body and after loads of MRI , scans, x-rays and investigation they finally tell me that its the main nerves in my neck and guess what ! NOTHING CAN BE DONE! other than a treatment i could loose the feeling in my left side of my body or total feeling all over just from an injection into the nerve. The risks are so high that the only other option is again to learn to live with the pain and manage it with painkillers and medications until it gets to a point where i can no longer live with it and i have to have the treatment risks an all. Its just its really getting to me that each time i finally get a diagnosis and find out whats going on it turns out to be something that is quite serious and i can't do anything about. All of these problems are life changing illnesses on their own as you have to adjust your lifestyle to compensate for the problem. 

I have tried to do as much as i can in order to make my life a bit easier. I manage the cluster attacks despite being a chronic sufferer and getting them daily, through exercises, medication, oxygen and injections , oh! and a lot of git i manage to live with them and put up with the condition despite it not letting me work, go out and enjoy normal things, sports etc. 

I then adjusted my life for a second time to accommodate the hiatus hernia, changing the way i eat and what i eat and the way i do things around the flat and now again i have to change my entire lifestyle for the damaged nerves and the problems it is now causing me not to mention the pains. That's the main reason i wasn't writing so many updates on my blog, because i am fed up with being ill all the bloody time. Just once i would love to be able to say, I got up and went for a lovely long walk in the sun this morning instead of the same old routine day in day out.The closest i get to that now days is hanging out the bloody window first thing in morning or only when i actually manage to get out and do some fishing or walk around the shop in morning as its close. The pain becomes so bad when i walk after 5 or 10 mins on my feet i feel like someone has bettered me around the lower back with a bat or pole or something. The muscles in the back become so sore its crazy.

Well that's me done for another month with all the moaning and winging once again. The health has't improved in facts its slowly getting worst as i grow older so its inevitable its going to become a real problem one day soon but until then i will continue to struggle on and try and keep my chin up no matter how much it annoys me. This year i am going to try and get out and do as much fishing as i can. I started this month with a big session down at the local lake for 5 days so now the next month i will do a couple of 2 and 3 day sessions so i can spend as much time outdoors as possible as i feel so much better when out and about and in the fresh air. Lets hope i can come to terms with this damaged nerve and learn quickly how to control it or at least live with the problems it causes. 

Fingers crossed eh!

Attacks have come back but still better than before.

Well the beast came back with its early morning wake up calls after having a break from them for almost 2 weeks. That's now a record for me, actually going 14 days with no early morning attacks. It's a shame they couldn't stop altogether but that's wishful thinking.  I was still getting the attacks during the day but since i started the Ametrypline they reduced right down and now i know whats wrong with my back and left side and have started to learn to live with the problems the attacks are at an all time low for me which is amazing.

Despite my attacks being so low and learning to live with the pain from the damage nerve in the neck i am still feeling very run down and lethargic. I am not sure what is causing it and why its happening. I have been getting pains in my kidneys so i have been watching when i go to the toilet for signs of any infections or problems but all seems fine. When i try and walk to the shop my energy drains away so fast its crazy. It feels like i have just run a marathon when i have only been walking for 3 minuets.  It could be the nerve causing it as i was told i would get very wide spread and severe symptoms but it would just be the nerve playing up. Its so difficult to tell/

I have been waiting months for the new fishing season to start and finally it has so i am off out fishing. I have decided on a week of no stop fishing and relaxation so I am gong down my local lake and am going to camp out there for the 5 days and fish and relax no matter what the weather. Just to get out in the fresh air and leave all your troubles behind for the week will be heaven. Fishing is how i  now relax and relieve all my stresses and worries. After not being able to fish as much as i wanted to last year due to all the problems and hospital appointments i am really going to try and make up for it this year.