Things are starting to look up for five minuets…

Friday 27th June 2014

Finally after having to put up with 2 days of sickness and diarrhoea my stomach has settled and stopped producing so much wind and bloating me up all the time. I am still getting some build up with the wind from the Pregabilin tablets but no where near as bas as it used to be. Also my bowels are moving normally and with the help of lactulose solution to keep water in the stool to keep them soft i am able to go to the toilet normally.

I am booked back into the day warm on Monday 30th June 2014 for a check up and  a review to see how i have been getting on. I am still getting pains  across the front of the chest and down the back but that is down to the nerve so i believe and they will take a look at that as soon as they have my head stable. I have started my new medication, Sodium Valproate 200mg twice a day and then they will build it up until the attacks stop all together. Thy may not even need to do that is he attacks don’t return as i haven’t had an attack since i started taking the medication (yet) but its only 1 day and anything can happen.

If the head does become bad again for a while i will then increase the tablets as the doctor instructs me and at the rate they tell me to do so as long as they continue to agree with my system. If they start causing side effects like the other tablets i have tried then i will just have t stop them straight away and see what is next the doctor will recommend. So far i am really happy that the tablets seem to agree with my system and don't seem to cause any problems apart from a  bit of extra sweating and some nightmares. I remember from when i started the Mirtazapine i used to get nightmares for around 2 weeks before my body became used to the drug so i think it will be the same sort of thing. The only thin that bothered me was hat the nightmares were very violent and when i woke up i felt angry and very nasty at first but then calmed when i realised i was properly awake.

My appointment with my normal GP is on the 8th July 2014 so i will be able to update her as to what is going on and how i am doing with the medication and also she will be able to take a look at the lump that has appeared a the bottom of my back on the left of my spine witch is the main cause of all my back pain. Its the point it starts from and runs right up my back into my neck. Maybe she will know what it is and advise what treatment i need in order to sort it out. I am also going to push the hospital on Monday to get the physiotherapists to pull their fingers out and get my treatment started on my neck and left side of the body as i have a bad weakness all down the left side eve since my attacks first began.

It seems like finally things are starting to happen but i keep getting acid being brought up every now and again when i am sat drinking coffee or eating i don;t know why it is and i can’t take anything for indigestion as it reacts with my new medication so i am not quite sure what to do with out asking the hospital on Monday but at least i am feeling a lot better and a lot more positive. I am even planning a Carp fishing trip shortly as long as the weather holds and will allow us to go. I can't wait.

Saturday 28th June 2014

Yet again i spoke too soon as i was again woken by the beast this morning at 3am with a massive attack hat lasted almost 2 hours and has drained the life out of me. I feel so weak after having the attack i can hardly stand and walk about. Just making myself coffee seems like a really hard task at the moment but i hope my strength returns soon. My neck feels like it has been twisted around in circles and then untwisted again and is causing me a lot of pain when i move my head from side to side so the less movement at the moment the better.

Again the attack has left me with pain going up and down my back again right t the base of the spine and deep into the neck. The pain is like a straight line being cut down the left side of my back and is very sharp at times. I know its a nerve as i have had scans and tests and they couldn’t see anything yet i can feel it clearly. When i see the specialist on Monday i will bring it up again and ask they look into the problem as it is now getting worst and worst over time. It seems like as my head gets better and the attacks become less the after effects of the attacks are now lasting longer and staying around for days instead of hours.

At least the medication hasn’t caused me any problems so far but i am on a low dose at the moment and i know they will start to increase the dose soon if the head attacks don’t stop. The only side effect i don’t like at the moment is that it gives you knight mares when you sleep and i am talking violent nightmares. So violent you even wake up with palpitations as you think you are in some sort of fight or problem and then when you realise its a dream and that you are awake, and this takes a few seconds, you then start to calm down.

If the nightmares don’t calm down after a while then maybe i will have to ask the doctor for some thing to help me stay asleep as waking up in the early hours with a bad head is bad enough i don;t want to be doing it every day due to stupid dreams causing me problems i have enough problems as it is. Thank god i have to see my own GP on the 8th July as she will be able to take a look at my back and also advice me on what i can do about my sleep and the dreams i am having.

This new medication comes with a warning leaflet stating if you have these dreams you must report them to your doctor straight away as the dreams could become a reality and you can start to become violent during the day when you are awake and i don’t want to end up like that. I was having anger problems yesterday for some reason and every time i did something stupid like spill my coffee i would get so angry with myself i just wanted to break something and had to hold it in and  bite my tongue so to speak. Lets hope it was just my depression playing up and nothing to o with the medication. We will soon find out after a week or two as its takes that amount of time for any medication to get into your system properly.

The Beast is attacking in the early hours….

Again i have been woken by the beast at 3am tis morning and it took until, one 4 am before the pain would ease enough for the injection to take hold and stop the attack in its tracks. Again after taking the injection it has made my chest tight and my breathing deep but at least it has done its job and stopped all the pain in the head. It does make you feel weird for a while and your head feels heavy but i think that's just the drug working on the nerves calming them down and stopping the pain one by one.

The attack started as soon as i opened my eyes yet again. I didn't have chance to grab the injection quick enough to stop the first part of the attack. All down the side of my face felt like it was on fire it was that painful. The pain was shooting from behind the left eye and out over the top of the left head into the back of the neck. The body just burst into a sweat as though someone has switched on a water tap. Every time i get an attack its the same thing and the amount of times i have to change my clothes each day as i end up drenched after an attack is a ridiculous.

I am hoping that's the last attack i will have today as it seems to be like hat for a while just lately. I get the first attack of the day in the early hours o the morning and then i don't get any other attacks until the next morning. Sometimes i can get them al day long but that is normally during the colder weather. The warmer weather seems to help the attacks and keep the head at ease. Lets hope the rest of the day will be a pain free day and i can get on with things.

I have t get my script from the doctors today as it should be ready. They say they only need 48 hrs. for a script to be prepared and signed so i should be able to start my new medication soon and hope that that will help with these early morning attacks. If it does then we may have found the right medication combination to get these attacks under control, but if not then its start all over again. We will have to wait and see/

Missing the summer days ……

After burning myself something silly and toasting my forearms whilst out fishing i have to say i slept like a baby for the whole of the weekend. It was the best idea to go fishing and get some fresh air in the lungs and it has seemed to have done the trick as far as my head i concerned and haven't had many attacks at al, to be honest my first attack all weekend was this mornings wake up call from the beast at 4am.

It’s a shame my back isn’t as good as the rest of me at the moment. Ok i have to take care not to set the head attacks off and tend not to go far from the flat due to fear of an attacks but with this lush summer weather all i want to do is get out and about and do lots and los of fishing. I wish the pain in the back would just stop so i could go down the lake now fishing as i would just grab all my gear and go, The trouble carp fishing is the amount of tackle you end up carrying with you and even if using a stalking method you still need t be able to carry a bit of gear and even that can be painful for me.

I really hope the doctors next week will be able to sort it out and tell me exactly what is happening and why i am getting so much pain all the time . once its sorted or at least i know what it is i can take measures to compensate for the disability and make sure i get out a lot more than i am at the moment. It feels like i am missing all this nice sun and all the fun at the lakes. Maybe i will have to invest in this giant fishing barrow specially designed for people like me who have problems with their backs or nerves and it will go over any terrain with ease but it costs nearly £160 and that’s a huge expense especially someone on benefits and sickness.

I am off over the doctor to see if my new medication is ready to pick up. I will ring them first when they pen just to make sure it is there and then i will take a casual walk over so i can get some fresh air. As long as my head will behave itself it shouldn't be too bad and being out and about is doing me the world of good. I can’t wait for my next fishing trip already and am thinking of planning a 2 or 3 day trip very soon.

Sunburnt forearms …..

Thank god i didn’t have any attacks yesterday and actually made it out fishing. I have been trying to go fishing for ages but always my head ends up playing up all the time. I have noticed that while i am fishing and relaxed i don't have no where near the amount of attacks i get when i am at home. So it must do some good for me.

Unfortunately i have burnt my forearms and they are very red and sore and have started to show blisters they are burnt than bad. I will not have to stay out of the sun for the next few days otherwise i will risk making them worst. I keep getting these small little water bubbles appear on the skin and when i run my finger over them the water runs out of them over the top of the skin. I think tis is a case for an ice pack day i think.

Well its almost time to start my new medication i have to pick it up from he doctor. I am hoping so much that it will make a difference to the attacks i get but i have had so much bad luck lately i am starting to doubt anything is going to help.I am really fed up with all the different side effects of the medication and if you take one thing you have to take another just to counteract the side effects.

Well i started my day today with an attack from the beast , it was only to be expected being sat in the sun all day fishing and not catching more than a nasty sun burn. Next time its so hot i think i will give it a miss.

Getting Ready for fishing, already an early start

My eyes opened wide  and for a few seconds i didn't know why i was awake but then the pain suddenly hit me and shot from behind the eye over top of the head into my neck and down my back. No matter how many attacks i get i can never get used to the early morning ones. You are already drained due to tiredness and then to have to put up with a full on attack is just too much to ask. Several times when i have been having early morning attacks i have passed out and come around with throbbing heads.

I managed to get into the front room and take my injection and then had to ride the pain until the injection kicked in. Because i didn’t take it straight away it seems to take longer to take effect so i put on the oxygen mask and turned it on full. Oxygen is brilliant when having a CH attack as it halves the amount of time it can last and can sometimes , on rare occasions, been able to abort the attacks all together.

My back is killing me at the moment witch is not good as i am going fishing later on today so i hope it eases off soon. With the help of paracetamol i should be able to keep the pain at bay and look forwards to my day out fishing with my mother and step father. It’s about time i got out as i have been shutting myself away a lot just lately so i am hoping the fresh air will be good for me and good for my heath and mind.

We are leaving a 9 am in the morning so i have plenty of time t prepare and make sure i take the right medication with me . You never know what can happen when you are out but i doubt anything will but always bet t be on the safe side. I am so looking forwards to fishing its driving me insane all i can think off is getting my tackle ready and try out different rigs so i will stop the blog for now and give you all an update on how i get on.

Another painful night with the back but feeling better at last–time for some fishing i think!

Another painful night with my back causing me problems an pain up and down the spine. No matter how i tried to get confortable i just couldn’t get to sleep. I must have managed a few hours as it was one o'clock when i first looked at the clock on the wall then then nest time i looked was when i woke up at 4.30am. I suppose it beats being woken up by the best for a change but i would have loved to have a lay in this morning,

Yesterday  had the meeting with the guy from the Department of Works and Pensions going through my claim making sure i am getting the right amount of money and that everything was in order. As you can imagine i started to worry wondering what on earth i had done and why they were picking on me. Thankfully he put my mind at rest and i didn't worry so much but at least t is now done and he has told me that everything is in order and there is nothing to worry about. He said all my paperwork is up to date and was impressed that i had kept every social letter since i started claiming back in 2001.

I suppose its only natural that they have to check people, especially those the long term sick as they could just be playing the system and defrauding he social so i am assuming that this is one way they are catching the cheats. I didn’t mind so much when the guy was here as he was very friendly and polite and put me right at ease. Thank god i keep all my records so no one can question my illness.

Well at least its all over now and i can get back to doing things i like. y stomach has stopped being painful and my back is still in a little pain but nothing i can’t handle. I have decided this Thursday to go fishing at my local lake at Peterstone and see if i can catch a few specimen fish. I have invited my mother and step father Brian so we should have a great day out as the weather forecast is looking good, let’s hope it stays like that and there are no last minuet changes,

Benefit Review Day

Yet again its been an early morning call from the beast resulting in me waking up at 3am this morning and then having to battle the beast for more than an hour. The pain was so strong the ringing in my ears over took any  sound including the television. I have had some had attacks but never as loud as that. I am shocked it was so loud but at least it is now gone and back to the normal level now the attack has eased off.

My neck is really bad this morning and is also making my back very painful causing shooting pains u and down the spine. No matter how much i rest or try and stay still i still get the pain and its so annoying at times i just want to scream.

Only a short blog today as i have the benefit review board coming to see me and how bad i am . Why they just can't get the information from the doctors i don’t, All the tests i have been through and the hell the doctors have put me through from different drugs has taken its toll and  suppose these people will find me fit and fine as the are aid to do so by the government. It's amazing how many disbled people i have known has los there money and they dn cae wether theycan get to the job ceer or not thier excuse is ifyou want money you wil find away, Well let me tell you one thing i wont be able to and i will go with ut fod or money if that the cas and see how a death wold look on thier records. It makes m so angy so many peple who deserve to be disbled are infact tying to find jobs and ending up iller than whenthey started know but i suppose its something i must go through, here goes… good luck

Painful night and long day….

again i have had a painful night with my back playing up all night long, every time i moved in bed it resulted in agony running up and down the spine all the time. I suppose i have to be grateful that its not the head setting off every five minuets but i am sure it wont be that long before it starts all over again. I don’t know witch is worst at times the head or the back. They both seem to last just as long as each other and leave me in sweats and agony all the time.

Today i am lucky to have my social and benefits review and maybe i can ask them if there s anything i am entitled to for help with getting about as it is becoming ore and more painful each day. Sometimes i wake u and i am in tears where the pain is hurting constantly and there is nothing i can do to ease the pain and then there are other days where i feel fins and can run around the block with no sign of pain at all. Its very strange and to what is causing it all i am in the dark.

When i first started this blog over 2 years ago i never through i would get any readers or people following my story but bow was i wrong. I seem to have touched a few people and its nice to know that if i can’t make a difference at least i can educate that this condition exists and it isn’t all in the imagination like i as lead to believe for over5 years solid. Once i got my diagnosis it was as if a light has been switched on and finally i knew what it was that was slowly destroying my life. Thanks the Dr Pickersgill, my specialist, he has been a god send and with the injections he has supplied and other medication i am finally getting my life back al be it slowly but surely.

I don’ care how slowly it takes as long as i keep getting improvements and hope that i can finally get this beast under control. It’s amazing how much its takes out of you having to deal with attack after attack bt hopefully one day it will all be over.

Fed up of the constant suffering…

You would have thought as it was my birthday yesterday the head may have given me a break from the attacks and the pain all the time but sadly it wasn’t the case i was again woken up at 4.40 am this morning. At first i thought i had woken up naturally as i didn't have any sign of an attack building so i when into the living room and turned on the TV. It was at that point i cold feel the pressure behind the eye and over the top of the head and then the pain started just as quickly as i noticed the side effects ands i was instantly in agony/

It was at this point i had begun to cry wishing it was someone else having to go through the pain i had to endure and wished for it to stop but no matter how hard you wish no one seems that answer. I have been so bad at time i have actually wished for death to come and end all the agony but there is still part of me that believes even with death i am still going to suffer that attacks as i do. so there seems to be no answer to my predicament.

Just to be able to go a couple of days pain free would be a miracle but one that will never happen to me and  am slowly getting to the point of no return, I no longer know what to do to end my suffering and i pray that some day thy will eventually find a cure.

Will it be fifth time lucky for my medication ?

Yet another early morning wake up call from the beast at 3am this morning. It really becomes annoying when you are woken up so early and no matter how hard you try you just can’t fall back to sleep again. The attacks seem to be staying in the morning period so far with only a couple happening during the evening. Most of the attacks in the evening are set of by my neck or so i believe. It seems like every time i get pain in the neck around 20 to 30 minuets after the neck has started playing up the head then follows and develops into a full blown attack. Until i can find out exactly what is happening to my neck and back i am just stabbing in the dark so to speak. I am still waiting for the physiotherapists to make an appointment for me so we can see what on earth is happening but i think they are waiting until i have had my endoscopy.

The endoscopy was requested as i have been getting food and liquid trapped when i am eating or drinking and it feels like it is chocking me until it suddenly moves down into the stomach with a pop. It’s a strange feeling and can be quite scary at times as you are unable to breathe properly until the food or liquid actually passes through what ever is obstructing it. I sometimes have to rub and bang on the front of my chest with my hand to help the blockage move. It also seems like it has been slowly getting worst over time and no matter how careful i am i will end up getting a blockage at least once per day.

Again i was back at the hospital yesterday to report the bad new that the different type of lithium they gave me to try also had a very bad effect on me and has set off my bowels all over again. Last time it took 5 weeks for it to get better and return to normal so i am praying it doesn’t last that long this time. Also when i took the medication my throat became very sore as did the inside of my mouth and my eye sockets. I also had a feeling like the inside of my stomach had been scolded and when i tried to open my bowels it was like shooting flames from your rear. I also noticed that my skin was feeling very tight and sore around the face and i was slightly swollen.

It wasn’t until i told the nurse when i went to neurology yesterday that they explained it was actually an allergic reaction and i could have died from it as i didn't seek help. I was told next time to ring 999 straight away as i was very lucky my throat didn't swell up and close stopping my breathing. I explained i didn't know what was gong on and thought it was just side effects but they explained i was very lucky to stop the medication when i did. I just can’t believe my luck when it comes to the different medication we have tried. 4 different medications and 4 different side effects or allergic reactions making me very ill. They have now changed my medication to Sodium to see if that will help control the attacks i am getting. You never know i could be fifth time lucky.

My back is in agony and also swollen …..

It’s been a painful couple of days with the head waking me up in the early hours with attacks from the beast and my back and neck aggravating the situation making it worst. The last few days have been agony with my back and now i have a small lump at the base of my spine on the left hand side. This lump moves slightly but feels as though it is connected to something. This is causing me pain right up the back, it’s a sharp type of pain that is so annoying it’s unbelievable. Also i am getting sharp pain on the upper part of the back that seems to connect to my neck. A sharp stabbing pain that keeps taking my breath away when it comes. The neck is constantly sore and painful and also at the front of my chest there seems to be a muscle or something that is connected to the neck as i have pain shoot down and across the chest. As to why its all suddenly gone so bad i don’t know i just thank god i am back at the hospital on Monday so i will be able to report what is going on.

I am also back in to hospital again on Friday as i have to have an EEG scan of the brain not only to see if i still have one but also to try and see what is going on inside the brain and the activity especially when i am having an attack. I am just hoping they won;t let me go through a whole attack and will allow me to abort it when it happens as i don;t think i could cope again having to put up with this level of pain for more than one hour constant. It takes it out of you when you are having attacks and when you also have your injection. The chest tightens and your breathing becomes shallow as the medication kicks in and attacks the nerves shutting the pain down bit by bit. It gives you a woozy feeling as it switches of the pain ad then its gone as fast as it started. The injections have been a god send and have helped me to cope with this condition.

I don’t know what they are going to do about my back and why its becoming so problematic. It could bee that i have slept awkward or got a chill to the back and the lump at the bottom could just be a gnat bite as i seem to have been eaten over the last few days and have loads of bites around my ankles, legs and back. So sometimes the simplest of explanations are usually the right ones but i still need to get it all checked out. The last thing i want to do is to make things worst than they already are so by getting it checked just to be on the safe side seems the most sensible thing to do. It could go after a couple of days and i am worrying for nothing but i would rather make sure just to put my mind at rest.

On a good note, my bowels have finally started to get better. I am no longer getting bad pain in the kidney area or at my sides. The bloating has calmed down and i still get a little wind but that’s normal. I am hoping that its the end of what we thought was IBS but turned out to be side effects of the medication. I have gone through hell and back as far as the bowels are concerned and i am still suffering from constipation and probably will do for the rest of my life now i have to take medication constantly. I remember back when i was so bunged up i ended up in hospital and all the pain i had to go through not to mention the sleepless nights due to all the pain i was in and how uncomfortable i was. I hope i never have to go through that again so i am now being careful as far as the bowels are concerned and  i have to start watching my diet also.

It’s almost the start of the “official” fishing season, when the rivers open to the fishermen on the 16th June. I have decided that this year i will start from that date that way i had time to get myself feeling fitter and better so i can get out and do more fishing. Everything was on target until my blooming back decided to play up so i am praying its just something simple and will go over the next few days. If that's the case then it’s time for me to start getting out a bit more and get back into my fishing. At least i will get out in the fresh air and also get more exercise. This should make me feel a lot better and i will start to get back to my old self. I have been doing well this year and so far, other than my health, things have been going good for me so let’s hope they continue to improve and 2014 turns out to be my year.

Thinking back to when it all began …..

Again i was woken by the beast this morning , not at 3am but a little later, it was just gone 5am when i opened my eyes and the pain instantly hit me. I even dreamt that the attack was building and when i woke up it started immediately. The pain started from on top of the jaw and behind the left eye and stretched over the top of my head and into my neck. Not even giving me chance to take an injection before it became a full blown attack. I raced into the living room clutching the left side of the head in desperation as though my face was going to fall off. The pain was so strong i couldn’t hear an noise apart from this horrible whistling or static sound in my ears that i get. I believe it is tinnitus and i have had it ever since my head was split open in Cyprus.

I never forget that day when i had the head split open, walking out of a night club about to eat a stuffed backed potatoe after a long night of drinking and dancing in Faces nightclub (actually called Joy Nightclub back then) in Ayia Napa, Cyprus. All i felt was a shock to the head and a cold feeling on the left side of the head and then nothing. Everything went black. I didn’t even know i had been hit across the head with a metal scaffold pole from the building that was opposite the club as they were having renovation work at the time of the incident. When i cam round and saw people staring down at me asking me if i was OK and if i knew where i was and what my name was. It was a couple of seconds, that seemed like hours at the time, i then realised i had been hit over the head and the pain started to set in.

II felt woozy and after returning back home and sleeping i woke the next day with my head stuck to the pillow as the cut continued to bleed through the night. I am surprised i actually survived such an injury now i think back as i did loos an awful lot of blood and was a mess for quite some time after. I had to have a shower the morning after to get the pillow unstuck from my head and the amount of blood that washed away was scary. My head just wouldn’t stop throbbing. I was staying with a mate in Larnaca at the time and had to get a service taxi home to Nicosia, a 45 minuet drive up the motorway. A service taxi is like a regular taxi except you share with others to keep the cost down and is even cheaper than catching a bus.

By the time i got home to Nicosia and lay down on the sofa i was totally exhausted and in a lot of pain. It turned out that i had concussion from the attack and was sick for at least 2 days and ended up sleeping for a whole week. I know it had caused some damage to my head but didn’t realise it would have such a long term effect at the time. After the initial incident and then recovering for a total of 3 weeks i found that everything seemed top be OK and i managed to get back to a normal life for quite a few years before i had my first ever cluster attack. When i started to get the clusters i only used to have them once every couple of months and thought they were just migraines brought on by the injury that i had gotten. Boy was i so wrong.

Well ever since that faithful day i have suffered with this condition and it has taken over 10 years just to get it diagnosed as to what has happened to me. I couldn’t believe it when the specialist told me and the horrible words that followed, “Unfortunately it’s an incurable condition Mr Russ”, when he stopped i almost collapsed where i was. When i look back at it all and read over my blog i realise just how much  have been through and how i have had to fight just to get where i am today. With the hope that this new medication will start working and finally i may get the beast under control, i can finally see i have some sort of future and i can start to live my life again.

I know it is wishful thinking that things will get back to a normality once the new medication has kicked in but if i felt every medication was going to fail i wouldn’t bother getting up in the mornings. I have to try and keep positive and hope that we finally find the right combination of drugs to control my condition. I just wish the rest of the problems would start to settle. Most of it caused by medication and the side effects you get from it. The trouble with the bowels was from medication, the kidney pains i used to get was caused by medication, muscle cramps in the back was caused by medication, panic attacks was also caused by medication. You could say i have been very unlucky as far as medication goes. Let’s hope this will all change soon.

Attacked by the beast now my back is bad …

Again i was woken by the beast at 4am this morning with the attack leaving me with sharp pain in the back and neck. It seems that my neck and back has been aggravating my condition lately and i seem to be having more attacks than i normally would all because something in the neck keeps setting them off all the time. Not happy with just having pain in the neck it also spreads down the left side of my back all the way to the base of my back where i now have a small swollen lump appear on the left side. This lump is new and only appeared over the last couple of days but what ever is swelling up is directly linked.

Thankfully i had my appointment with the specialist at the hospital yesterday and am happy that we are now going to try a different make of lithium to see if that will help get these attacks under control once and for all. The last attempt with the other make of lithium ended with me getting an infection in the throat and my bowels blowing up like before and putting me in agony all the time. The specialist has said to watch carefully with this new trial and if there is anything that i feel uncomfortable with i am to stop the medication immediately and report back to them next Monday. At least i don’t have to wait ages for appointments to be made as they seem to be slotting me into any gap so i can get the treatment quickly.

I am praying this new medication takes hold and will be a success as the last 3 medications i have tried have all ended up with me becoming even more ill than i already am. The one thing i don’t want is the bowels blocking up again and causing me all that pain and discomfort as they did a couple of months back. I don’t think i could go through all that again. The bowels have slowly, and i mean VERY slowly, been recovering and returning back to normal but i still have a few problems with the wind and end up in pain from trapped wind every now and again but at least its not as bad as being bunged up unable to go to the toilet.

I think i will have to show my doctor this lump that has appeared in the back as it is causing me a lot of pain at the moment even though the attacks has eased away and the injection did its job. I don’t know why the back has suddenly decided to become bad and what i have done to cause it to become like this, i will just have to be careful now not to make it any worst than it is and try and rest it so that it heals and returns to normal. It is possible i have pulled a muscle in my sleep whilst turning over in bed or even slept awkward causing it to become painful and the muscle or tendon has decided to swell up and that is what i am feeling when i feel the lump. Again its all guess work until i get it checked by the doctor so time to make another appointment i think.

A tough week followed by a tougher weekend…

Well its been a tough week followed by an even tougher weekend as far as my head is concerned. I have had a lot of attacks over the years but these latest ones seem to be really wiping me out. I never thought i would ever say that the pain actually feels as though its is getting stronger, i never thought it could get any stronger than they are and that a cluster attack was the strongest pain a human can get. I don’t know why the attacks feel so strong and why they seem to be draining the life out of me, i can only assume it has something to do with my neck as that seems to be the main suspect. I seem to be getting a lot of pain in the neck witch seems to trigger pain in the back and also my attacks.

If something is trapped in the neck again or something is damaged or injured i don’t have a clue but there is definitely something not right with the neck and a lot of pain coming from it when i move it about. I have also noticed that it is constantly grinding as if something is stuck in the joints, maybe this is what is causing the pain. Its all guess work at the moment and i can’t wait until Tuesday as i am at the hospital in the afternoon with my appointment with the specialist. I will have to tell him what has been going on and how bad it has been making me. I have also been getting a lot of food and liquids trapped when i am trying to swallow and this has also been getting worst over the last few days. I don;t know if the neck and head attacks would effect what is going on in my throat or stomach but its weird how everything is playing up so badly all at the same time.

The pain i am getting in the back is starting to really get me down the last couple of days as i just can’t seem to get comfortable when i try and sit or laydown to relax it just constantly aches and i have to keep shifting around as if i stay in one position for more than a few minuets it starts to hurt more than ache. It especially annoying at night when i am trying to get to sleep. No matter what position i lay in i just can’t get it to stop and end up tossing and turning until the early hours where an attack will either wake me up or if a am lucky i will end up falling to sleep due to exhaustion and tiredness. Then i manage to get a few hours before waking back into the same routine. 

Summer is finally here and the warmer weather came early this year and this has given me a small break as i have managed to half the amount of attacks i normally get with the help of the medication so far and also the amount of pain free days i get has increased, only by a couple but it makes a huge difference. I have to be grateful for the changes so far as i could be in a lot more pain than i already am in. Imagine if i was to continue to get 8 attacks EVERY day, i just don’t know how i would cope. At least my attacks have dropped and the most i get in 24 hours is now 4 or 5 but i average about 2 or 3 a day and the injections take care of them. This means most of the day i should be attack free and pain free but unfortunately my neck and back keep me in pain for a lot longer.

I have tried all types of pain killers and nothing works so i guess it must be nerve pain again and a nerve is damaged or trapped as, when the hospital investigated last time, something would have shown up. Even the specialists were confused as to where the exact pain is coming from. I had all types of scans and x-rays but nothing showed up so they put it down to either muscular damage or nerve damage and i would have to go for intensive physiotherapy, but i am still awaiting my appointments for the physio. I hope it will come soon and also the one for the endoscopy so we can find out what is going on with my swallowing.

It’s weird how, ever since i started the medication for my condition, i have gone down hill fast with regards to my health and now things are improving it seems like we deal with one problems and another comes along. One thing is for sure by the time i get this beast under control i will be fit from head to toe as the specialist seems to be making sure i am tested from head to toe and what ever shows up is dealt with straight away. The NHS at the heath has been amazing so far and although it can sometimes take ages to get appointments when you do get there they pull out all the stops to get you well as quickly as is possible. Let’s hope they are just as quick with the next set of treatments.