Paying the Price for a Terrific Day.

What a GREAT day i had yesterday. Completely pain free and totally relaxed.

Being shut away in the flat all the time was really getting to me, it was making my depression worst for sure. Not being able to go anywhere because i was having these attacks all the time has changed my social life forever, or so i thought!

After deciding to take up my hobby of Fishing again and to take it serious has been the best decision i have made to date. It also helps that my Mother and Step-farther are both into fishing as well as my brother so it is in the family blood so to say, and yesterday was one of the most enjoyable days i have had for a while.

OK, the fishing wasn’t great, the lake that we went to has just got over a poisoning problem and had to have their fish replaced. It also seems like the lake is over fished and over fed so when it comes to the sport, the fish are what we call shy feeders and takes a lot of work to catch them. We didn't do to badly though as i managed a couple of nice Bream and loads of skimmers that kept falling off every time i brought them to the edge of the bank (really annoying) and my mother managed a few different types including Roach and Brian even managed to get himself a nice little Perch. All in all the day was a success and  with the nice warm sun on your back all the time gave a real healing feeling.

I have to say i relaxed more yesterday than any other day in my life. I really do enjoy fishing and for some reason i find it so relaxing and therapeutic, i wish i could go fishing every day but unfortunately i am now paying for yesterday. Woke up this morning ok, i wasn't woken during the night like normal as i slept like a baby after yesterdays sport. Then suddenly this morning i felt sharp pain deep inside my neck and that started a run of what i can only describe as the strongest attacks i have ever had. If i didn't know what was wrong with me for sure i would be up the hospital rite now.

So far this morning i have counted 8 big attacks, they are not lasting as long as they normally do but the pain level is way above what i am used to. I couldn’t take no more so gave in and have had one of my injections and that has seemed to have done the trick so lets hope that keeps them off for a while.

Anyway fingers crossed as its my hospital appointment tomorrow and i cant wait to see the specialist and explain everything that has been going on. I have to admit this illness is one hell of a problem to deal with and one of the worst to learn to live with. I thought Bi Polar disorder was bad enough until i was diagnosed with CH.

My heart goes out to all the sufferers of CH and their Carers, they are the ones who have to really put up with the torment of the illness and how they do it i don't know, but they are stars. I will keep you up to date as to what the hospital says so for now its time to get some oxy inside me….

Pain go away because its fishing day!

Well another early rise this morning but this time not because of a headache, makes a change. But due to excitement i think as today is my first “proper” fishing trip in years. Bought all my equipment, spent the day, yesterday, preparing specialised baits and now i think i am ready.

We have decided to fish “Pentwyn Lakes” today as they haven't been fished by my family in a few years so it will be interesting to see how well it actually does fish. My mother and step-farther is joining me on this fishing trip so should be enjoyable. Even if we don't catch anything my mother always takes her camping cooker and whips up a mean burger for lunch.

I continued to have a couple of attacks yesterday but no where near as many as i have been getting. I wonder if the medication has started to work as i have noticed a small decreases in the amount of attacks i do get. Just to be on the safe side i am taking all my medication with me for todays fishing trip. There is nothing worst then being stuck in the middle of no-where when you are having an attack with nothing to help ease the pain and i definitely don't want to end up in that position

well i cant see me getting back to sleep and there is still quiet a few hours to go before wo are off on out fishing trip so i am just going to lay on the sofa and doze away the rest of the morning. Ill report back later as to how the day went,.

Sleepless Nights

Here i am yet again woken at 4am this morning with a head attack. I don't know where this one came from as i had a great day yesterday and didn't have one attack. I even decided on an early night to make sure i got plenty of rest. I wonder if i rolled on to my left side and that caused the attacks to start again. I know its not the main course of the attacks but i have noticed if i sleep on my left side for more than thirty minuets it sets of a head attack so i think it must have something to do with pressure on that side of the head.

The morning attacks aren't like the big ones i get towards the evenings, the pain doesn't get as bad, but they still hurt like hell. I would liken them to when you have a raw nerve in an open tooth and you touch it with metal. That sharp pain you get is what these are like and they shoot from the back of the eye over the top of the left hand side of my head in to the back of the neck. Each attack only seems to last up to 20 minuets and then disappears as fast as they came. The trouble is with the early morning ones is that you get a number of them one after another until the pain seems to reach a peak and then they go.

Having attacks with only a few minuets in between is very exhausting but there is no way you can get any sleep. By the time you are dropping back off another attack starts and wakes you up. When you wake up you don't feel tired at all just a bit groggy from the attack so its a no win situation.

I am not sure how long the body can go with out proper rest but my last record was 2 weeks and then i collapsed. I was even falling asleep on my feet talking to people so its not good. I just hope these attacks die down as i was hoping for a pain free period for a while, looks like i was wishing too much.

Pain Free at last…

Finally after all those attacks and early mornings i have managed to get a full nights sleep with out being woken up. HURRAY, mind you it took 3x5ml vallium plus my normal tablets to get me to drop off. And i couldn't have had an attack during the night as i didn't stir once.

Today i feel regenerated and alive again. So far i haven't had any tell tale signs that there is an attack building and no sign of the pressure on the left hand side of my face. So looks like its time for my break and i should now get a few pain free days. Ok i have to admit it may only be one or two days but i hope it goes the full length and i get at least a weeks break from this horrible routine.

yesterday i went and bought my new fishing equipment to start my hobby up again. I didn't do to bad either i managed to get almost everything i need. There is still a few items i would like to buy but that will come in time. At least i am ready to go fishing this weekend so i am praying my head will behave it self long enough  for me to enjoy it.

sorry its only a small addition to my blog today as i want to get out and about before anything decides to start up again, so I'll check in later and bring you up to date..

3 AM Attacks….

Another un-godly hour wake up call from the beast. Its 3am and i am dead, well feel like it anyway. My eyes are sore, my head is pounding, i have a sharp pain stretching from the front of my left eye to the back of my head and down into my left side of my neck and shoulder. My god it hurts so much, i wish it would stop. Sharp sharp pain keeps stabbing me in the eye. Why have i got to suffer like this. What have i done to deserve this! No one surely should have to deal with this much pain, please god help me.

Each time i move my head i can fell how swollen things are inside, its like a pulling sensation accompanied with stabbing pains all the time. My god my face feels like its on fire. Please just let it calm down. That's it i cant take no more i have to take one of my injection!

The injection stings when you inject it into the muscle of the leg, hold it in for 5 seconds to make sure all the injection has gone in and then release. They take about 2-5 minuets to take effect depending on the strength of the attack. When they do kick in you can feel it stop the attack. A numbness comes over the stop of your head and neck and the sweating stops. Then a horrible feeling of being drained of all your energy kicks in with a side effect i can only describe as taking your breath away and tightening the chest.

I really cant keep doing this all the time, up at the crack of dawn, i have only slept for around 4 hours. I feel absolutely exhausted. Its pointless me trying to get back to sleep as now my neck has started and if i do try i am sure to wake with another attack. So its early morning TV and messing about on the computer and hope i can get some rest later in the day. 

Hot or Cold….

God i hate it when i am rite. All day yesterday i experienced different attacks ranging from small ones that lasted 5-10 minuets and massive ones that lasted over an hour. I hate it when the weather is bad like it was yesterday, the pain just wouldn't go away no matter how much i relaxed or tried to concentrate on something else.

One attack was so severe, i ended up holding my head next to the electric fire so that the heat level matched the level of pain i was getting. This started to ease the pain, and i found that as i slowly moved away from the fire reducing the level of heat, then the pain level would also reduce at the same time. I have tried this before and it worked well in getting rid off or controlling the pain levels. I do wonder if i am causing any further troubles as when i did this little exercise my face became a lot more swollen than usual.

I have heard of “ICE” being used to treat CH, and it has had a good success rate but not everyone finds that the ice treatment helps. This is now about the 10th time i have tried to use heat to treat my attacks and it is the 3rd time it has been successful at doing just that. Most of the time if i use the heat treatment it is just to control the pain as i found it didn't normally abort the attack, but yesterday was different and it actually stopped the attack in its tracks. Mind you it did take about 30 minuets to do it so i could be wrong and the attack decided to stop on its own but i don't think that is what happened. I am wondering where all the swelling on the face is coming from, is it a nerve swelling up or a muscle when in pain. As to the exact cause i can only speculate but i definitely saw a difference after i used the heat treatment. I know ICE can be good for bringing out bruising and to make swelling go down but i thought that was also the case with heat in certain circumstances, or is it just a wives tale? because when i use the heat the swelling seems to be worst.

Well again its 10 to 6 in the morning and i was woken up with my head deciding it wanted to give me a nice early morning again, swollen eye and runny nose is the order of the day so i can expect a few large attacks today. I don't have the shadow at the moment, all i am getting is a little shooting pain behind the eye this morning, feels like i got something in my eye socket and its scratching the back of my eyeball. I know through experience though, this is just the start of some very painful attacks so i best keep my injections close at hand.

Well as i said in my earlier blogs i was going to start up my fishing hobby once again and today is the day i go a buy all my equipment. I was surprised to see how much the sport of fishing has grown in the UK and how many people actually now enjoy the sport. There is so much nice equipment on the market it is getting difficult to choose! It never used to be like this when i was young, i remember fishing competitions on the side of the river “Ouze”, just outside Cambridgeshire, and there was a lot less people doing the sport then as compared to now. Well fingers crossed i find the equipment i am looking for and this weekend i should be out there fishing once again!

Winter is on its way…

I was lucky as i didn't have any more big attacks yesterday, i had a couple of smaller ones but no where near as bad as they normally are, i would have rated them on a level 4 on the pain scale of 1 to 10.

Again its the morning ones that are worst than the others. early morning wake up calls seem to be the norm now days as i was woken up again this morning at 3am with an attack, and this time it was a massive one!

Suddenly woke up not feeling tired, was wide awake and that is just not normal for me fist thing in the morning. “Why was i awake so early?”, i thought. Then came the sharp pain behind the eye and over the top of the head. So i jumped out of bed and sat in the living room waiting for the pain to increase to a level where i cant take it no more. I took my tablets and sat breathing in the oxygen hoping that would be enough to abort the attack again but i wasn’t so lucky this time. The attack just seemed to get stronger and stronger, so i gave in and grabbed my first injection of the day.

I really don't like taking these injections but i know they are a must if i am to control this beast. I took it hoping it would stop the attack quickly like it normally does but this time i was too late taking it. The injection just didn't seem to touch the pain this time and it continued to grow in strength. Pacing up and down the room, crying out in agony and pain. How i didn't wake the rest of the flats i don't know as i was surely load enough to wake the dead.

An hour had passed and the pain was still with me, massaging my head vigorously seems to help when the pain is this strong, it helps me concentrate on my breathing too. It is very hard to think positively when you are in so much pain, i know the attack isn’t going to kill me but when you are at that level of pain it sure feels like it is trying. Then, yet again, the pain just disappeared as fast as it came.

After the attack my neck felt like it had been crushed and ever time i moved my head i could feel a grinding sensation that i think is the bones rubbing together. Also i keep getting sharp pains in the back. These pains are slightly different from the head pain as they only appear when i have had the big attacks and when i try and walk its like i have aged 50 years over night. I try to walk and all i get is shooting pains up the front of the legs (not the back where i would think muscle pain would come from) and into the bottom of my spine. I can only assume at the moment that these pains are caused by a nerve swelling up or trapping after an attack. It makes moving around very difficult and painful, and these pains normally last a few hours after the initial attack. They have al;so been known to set off secondary attacks straight after the main one, so i am very careful not to let that happen as i don't think i could cope with attacks straight after each other. At least i get a few hours break in between them at the moment, imagine if they was every hour or so, my god i just couldn’t cope!

Well its looks horrible and grey out there today so i have to wrap up this morning as the cold damp air normally triggers an attack and with the winter slowly drawing in i know i am in for an interesting season! I know how much the pain and the attacks increase during the winter months so i have to prepare now, woolly hats and wrap around scarfs are the order of the day when the winter months arrive ……..

Oxygen Does Work!

Yesterday turned out to be a nice day after all. The pressure on the side of my head disappeared around lunch time and apart from a couple of small attacks before that, i didn't get any more attacks during the day.

Mind you i did manage to catch up on my sleep as i must have fallen asleep just after lunch and woke up again around dinner time (5pm). Talk about turning lazy. It was nice to wake to a clear head, no pain and no sign of it coming back. I sat watched TV for a couple of hours and then decided to play on the computer. Whilst sat at the desk just browsing the web i had a horrible feeling come over me like i was feeling sick but not physically sick. Then i felt a sharp pain up my back into my neck and that's when i realised here comes the beast. The pressure started building again and the neck became painful and sore to move.

My first reaction was to grab one of my injections, but then something stopped me and i thought, “why waste it, maybe the oxygen would be enough to stop the attack”. So i decided to sit with my oxygen on full blast and just breath in and out as normal as i could (when you are in pain it is very difficult and takes a lot of concentration to breath normally). The pain carried on building for a few minuets and i thought i couldn't cope with just the oxygen, but just as i reached for my injection, the attack stopped and the head started to return to normal. The pain stopped and the swelling on the left eye went down. The attack was over as fast as it started.

Now this is the 3rd time i have done exactly the same thing! Used the oxygen and not bothered with the injection. I know it doesn't work all the time, and when you get the really bad attacks not even the injection is strong enough to stop the pain and the attack, but this now proves that oxygen definitely reduces the time the attack lasts and can stop the smaller ones all together.

Its crazy the amount of things i am learning about controlling the pain i get from these “Cluster headache” and why they call them “head aches” is beyond me. I would liken them more to a stroke than a head ache. Anyway, today seems to be another day sitting on my oxygen as i have had a few small attacks this morning but nothing, i would say, as painful as last night was. So fingers crossed it has reached its peak and i now get a couple of days pain free.

Start the day in a painful way..

The attacks did continue through the day yesterday, i feel so exhausted today i could sleep for a year if only my head would let me. We have had really strange weather this year and i think that is the reason why i have been suffering non-stop.

Normally i get a break from the attacks around the summer months, when the weather is at its best, and then the attacks return and become at their worst in the cold winter months. This year has been completely different, it seems like i get them every day and only ever manage a week possibly two weeks break if the weather is nice. I am now dreading the winter months and what they have install for me. Last year with the snow we had was absolute murder. Every time i tried to go out side the flat door the cold would catch the side of my head and start off an attack.

I had to wrap up with a woolly thermal hat and a thick scarf that i had to wrap around my face to make sure the cold chill could not get in. I Looked like something out of the north pole expedition team. Mind you it worked well!

Again i was woken up at 4am this morning with another head attack, its really getting me down as the first thing i have to go through in a day is pain. I no longer look forward to my days as i know what's in store for me. Just to be able to wake up and not have pain, i have forgotten what that is like this has gone on that many years now.

I have been slowly increasing these Progabilin Tablets that are supposed to help my head, started off on 25ml in morning and same again in the evening and have now increased to 75ml, so i take 150ml per day total and i haven't seen any difference in the attacks or the level of pain i get. I know they can take time to get into your system but surely i should have noticed something. As it stands the only two things that really do help is the daily injections and the oxygen.

Well the weather is a bit better today but for how long i don't know. I have the shadow today, that real horrible feeling of pressure on the side of the face, so i think i will be seeing a few more attacks before the day is over. Injections at the ready and oxygen primed, its the only way to prepare for the start of the day.

Yet more pain.. again and again and again!

The pain in the neck continued to annoy me and set off loads of attacks. It feels like there is a golf ball stuck in the back of my neck. You can actually feel the nerves and muscles swollen when you have an attack. Every time you move your head you get a grinding sensation in the neck followed by sharp pain. I am sure what ever is causing me to have so many attacks is also responsible for the swelling and the pain that appears in the neck.

Not always do you get the neck pain when the attacks come but it seems like most of the time it is what causes the pain in the head to start, or irritates it after the attack giving you a secondary attack and problem. I could be wrong as i am still getting swelling on the scar at the top of the head where it was cracked open in Cyprus. The swelling seems to get larger when ever we have bad weather or a low pressure area. I am now convinced the weather is one of the main triggers when it comes to suffering CH.

Again this morning i was woken up by shooting pain behind they eye, jumped out of bed, rushed into the living room straight on the oxygen trying to cope with the pain. The weather forecast for today isn’t as nice as it has been, with a cloudy day and rain in the forecast i am sure i will get a few more attacks today so i am trying not to use my injections unless i really have to. I understand why i can only have 2 in a day as there is a big risk, with these injections, of having a heart attack if you take too many or even if you become reliant on them they can make the attacks become more frequent and i definitely don't want that.

So for now all i can do is take a few pain killers, make sure i use my oxygen correctly and just ride out the pain when it comes. I can’t wait for the hospital appointment, i am hoping they will have some new ideas on dealing with these attacks on a daily basis. So for now fingers crossed, lets hope its not as bad as it was yesterday!

WOW! Massive attack last night!

So much for pain free days, the sun was out, not a cloud in the sky! So it couldn't have been the weather that started me off again yesterday. I must have had some of the most painful attacks i have had to date, the pain level was so high the whole of my face was swollen, my left eye had decided to give up and close. Even when it did open i couldn't see out of it for over 2 hours due to the amount of water streaming from it. I broke out into a sweat like you couldn't imagine, i could have filled a few pint glasses with the amount that poured off me.

If anyone had walked passed my flat yesterday, they must have thought someone was being beaten or attacked as i was in so much pain i could not help but scream out,  the pain was shooting from the front of the head on the left side to the back of the head, extremely sharp pain then followed by more sharp pain straight behind the eye. It felt like someone was trying to cut me eye out of my head and had forgotten to use anaesthetic. No matter what i tried, the pain would not go.

I eventually gave in to the pain and took my injection hoping that would abort what i thought was the worst of the attacks but i was mistaken. After taking the injection i massaged my head for around 10 minuets or so and felt the injection starting to work. I went to lay down and let it takes its course hoping the the pain would just disappear like it normally did.

I lay there waiting for the pain to go and at first it did seem like it was vanishing but then all of a sudden there was like an electric shock from the back of my neck and that in turn kicked of what i can only describe as the worst attack of my life. Lasting over 2 hours i lay there praying to god for it to end. No matter what i tried i could not get it to ease off, i even waited the extra time and took my second injection thinking that would sort it out, but this time the injection had no effect. The pain just continued to rise, all i could do was massage the side of my head as the pain continued. I don't know if i lost consciousness, but all of a sudden, as fast as it had started, the pain suddenly stopped. I then had a strange taste, metallic (as if i had been sucking a battery lol), and silence. It was a strange feeling, I thought my time had come, this was the day that i die.

I then jumped up from the bed and walked into the living room, staggered a bit as i felt a bit light headed and extremely weak, the attack had seemed to have taken all the strength out of me, so i sat down for a while and watched a bit of TV just to try and take my mind off things. I then started to feel better, my strength was returning, the taste had gone, and the ringing in the ears stopped.

I have to admit that was one of the scariest nights i have had to date. I know these attacks can be bad at times and i have experienced some of the worst i believe, but never again do i want to go through that! That was the first attack i have had that i can honestly say scared the living daylights out of me!

Attack of the Squirrel..

With a painful start to the day, yesterday actually turned out quite nice, apart from being picked on by a nutty squirrel. YES you did read rite!

Yesterday morning, whilst getting my medication from the chemist, i was walking back towards the flat when suddenly i felt something hit me on the head. It hit me exactly where my scar is on the left hand side of the head. At first i was a little confused as to what had happened, i thought someone had hit me, but then realised what it was. Laying on the ground, and had been split in two by the force of it hitting my head, lay a conker the size of an apple.

When i looked up into the tree, there sat on a branch, looking sorry for itself, was this little brown squirrel. At fist it looked a little scared and shabby, i thought it must have dropped it whilst carrying into its hide away, but then i am sure i heard the dam thing giggle! Then suddenly it just ran around the back of the tree and it was gone. As i continued to walk down the road, rubbing the top of my head as i went, i suddenly felt something dug in my head, with my fingers i pulled it out., It was only one of the spikes you find on the outside of the conker shell. OUCH! Roughly five minuets later i had an attack, was my only attack of the day thank god, and i didn't have any more attacks until late last night and early this morning.

I still cant believe my luck, to be walking along and get struck in the head by a massive conker LOL. If it had happened to someone else i probably wouldn’t have believed it.

With more nice weather advertised i think its a day out doors today as i am now getting fed up of being shut inside all the time. I cant wait for my hospital appointment as i have loads to tell the specialist, especially how the head has been reacting to the changes in weather.

Pain, Pain go away….

 

Another painful night of being woken up every other hour or so. Its strange how most of the more painful attacks happen late in the evening or during the night, i assume it is due to a drop in temperature and pressure but i could be wrong!

Yesterday was a very strange day as i experienced pain like no other after i had a very bad attack that lasted for just over an hour. After the pain had gone i decided to walk up to get my medication from the chemist that is only at the top of my road. Walking was like being put through extreme torture, as i walked it was like there was razor blades on  the ground and i was stepping on every single one of them. The pain seemed to travel up my spine and into the neck. each step i took felt like i had weights attached to my feet and was very heavy when i picked my legs up.

I can only assume what had caused this as it didn’t continue. When i got home and rested for a while it just disappeared with out a trace and my walking went back to normal. I think i must have either trapped a nerve or bruised something in my neck when i was massaging it during the bad attack. The neck did stay sore for the rest of the day and only started to feel better this morning when i woke up.

Could it be due to the weather going to be nice again today? or am i in for a day of pain again? We’ll have to wait and see how the day pans out…..

Keep on Fighting…

 

First you get the feeling of pressure in the head then follows slight pain in the neck as it starts to build up. You can actually feel the neck getting stiffer, feels like there is grit in between your joints when you move your head around. Then the head starts to hurt. the pain builds and your eye begins to close, then the real fight begins.

The pain behind the eye gets to a point where it feels like its on fire and then starts to stream with water. Your nose then blocks up as you try to breathe through it and the pain gets stronger and stronger.

Eventually you are in a state, pacing up and down the living room, holding the left side of your face, praying for the pain to end. As the pain again becomes more and more stronger all you can do is rub the side of your head and face vigorously like you are trying to massage the pain away, but no matter what you try all it does is get stronger.

At this point you have two(2) choices, scream and ride out the pain until eventually it goes away leaving  you with a sore left head and neck or you can take one of the 2 injections you are allowed per day.

The injection itself works wonders and actually stops the attack in its tracks, but the side effects of these injections is just as bad, they start to make you feel sick (doesn’t actually make you sick) when the medication kicks in, also makes you feel slightly light headed and takes your breath away for around a minuet. To me, when i take one of the injections, it feels like i have just finished running a marathon and drains all my energy away in a few seconds. You can actually feel the medication working on the head as you start to feel a tingling sensation and then a numbness as the pain killer side of it starts to work and then in around 30 seconds (just as fast as they start) the attack is gone.

Until now i don’t know how i coped all that time with out the injections and having these painful attacks all the time with nothing but over the counter pain killers. These injections have become a god send at the moment as they are the ONLY thing that counters the attacks.

Well it looks like another grey start to the day, even though they advertised sun for today, i think its going to be another painful day for my head. Yesterday didn't turn out as bad as i thought it would. I only had two attacks during the night and managed to get plenty of rest for a change. I don’t mind getting attacks during the day time as i know i can deal with them, but the ones that keep you awake at night, they are the ones i really cant cope with.

That's all for my blog for now as i can feel another attack coming on and i have only been awake an hour or so, time to take my medication and breathe in some oxygen….

The Beast fights back….

Another enjoyable day ended in me crashing out from exhaustion again. I must have fallen asleep early as i remember it being light.

I was then abruptly woken by yet another attack. The beast decided to come pay a visit at half one in the morning and then decided to stay and annoy me for a few hours. It was around 5am i managed to fall back to sleep and was then suddenly woken up again, not by head pain this time, but by my neighbour singing. I think they must have had a party last night as he was looking rather worst for wear this morning and the singing left a lot to be desired.

Anyway, It looks like the beast is back to stay for a while as i have been getting the feeling of pressure (the shadow)  all morning and even though i have taken my tablets, and been on oxygen for the last hour, the pressure doesn’t seem to want to go away. I think this means i will have a painful day today and i am not looking forward to this afternoon as i know that is when most of the attacks will start.

Its times like this i say to my self “why me?”, “What have i done to upset him upstairs so much to want me to go through this much pain?”. I wonder if this is what he meant by “suffer little children to come unto thee”. I am not religious by the way, these are saying i remember from a youngster as i went to a catholic school  (St. Illtyds, to start with) before moving to a more modern school in St. Neots (just outside Cambridgeshire). I don't remember having many headaches as a youngster but i do know i used to suffer migraines as a baby ( according to my mother) so i think that must have something to do with why i am suffering  with this condition later in my life.

The sky outside is looking rather grey and un-inviting this morning so i defiantly think its a day indoors today, mind you i don't need much convincing as i hate to go out when i know i am going to have an attack or two. I feel embarrassed when people see me screaming and crying and basically go out of my mind in pain. Also when they try to offer help as there is nothing they or anyone else can do except leave me to deal with the attack. I find it better to be alone when i am having the worst attacks as if someone is near me I tend to lash out in anger and pain when the attacks happen.

Well that's it for now as i think i need to get back on the oxygen and see if i can get this feeling of pressure to go away. The neck has already started to hurt so i am definitely in for an interesting day…

Oh What a Night……

Well i have to say i had a brilliant day yesterday. The pain stayed away, i didn’t have any shadows or twinges like normal, i actually got out of the flat for a bit and i enjoyed it. By the end of the day i was knackered! So i decided to have an early night. And thus began the problems….

All through the night tossing and turning, i just could not fall asleep. When i did finally get to sleep my body decided to wake me up an hour later. I think because i am so used to be woken up during the night with the head attacks my body clock is now all messed up. Last night was murder, every hour i woke up and it then took me a while to force myself to sleep, only to be woken again.

Did i get any sleep last night? well if i add it all up i must have had about 2 hours of restless sleep. I look and feel like a zombie this morning, and thank god i haven't had an attack today. Don’t want to be drinking strong coffee as i think sometimes it can contribute to my attacks so am on the energy drinks this morning.

As to the beast? well as i said yesterday was brilliant, no attacks after the one in the morning, and through the night i didn't have one attack. As for today, i will reserve judgment at the moment as i haven't had an attack yet and my head feels ok but when i am this tired it can sometimes just set it off and the neck will start to hurt. The weather is advertised to be sunny today so i will go for a walk again to get some fresh air and that may wake me up a bit.

Lets see what happens today…….. hopefully a nice peaceful weekend!

What a Lovely Day….

After the shaky wake up call early this morning and a little pain in the neck i actually managed to have a pain free day!

The sun was shining with a nice calming breeze so i decided to get out of the flat and go for a walk. I decide to take a walk down Hendra lake, a nice fishing spot close to where i live, and see who was down there fishing. With the nice weather you would have thought a few would be out but unfortunately not. There was only 2 youngish lads at the far end of the lake float fishing (more like messing about if you ask me) and an older fella carp fishing at the near side where you enter the lake.

The walk was nice and calming and with the sun on the back of the neck helped ease any aches i was feeling form earlier in the day. Just walking around the lake brought back childhood memories of fishing with my school friends, its been a while since i took fishing seriously.

So i decided today that at the end of the month i am going to purchase some fishing gear and take up the hobby more seriously again. I think the calming effect fishing has will help me relax and in turn help with my depression by getting me out of the flat more often. Also if i try to keep to good fishing weather that also should help with the pain in my head.

Well i am hoping that the PF day (pain free) continues and i  get another good nights sleep. I am hoping that the pain will now stay away for a few days like it normally does so giving me the break that i really need rite now.

Early Night = A Good Nights Sleep !

I think getting an early night was a good idea last night, i managed to sleep right through with no attacks during the night! Brilliant! unfortunately i was woken up again this morning with an attack starting. I would also like to make the point that there is a weather change again! Its grey and horrible outside and looks like its going to rain as well. It does seem that the change of weather has an effect on CH sufferers as i am not the only one that has reported that the weather seems to affect their illness. Even on the “cluster headache support group” there a quite a few that report the same as me, they all seem to say that when the weather changes they all end up having bad attacks. It seems to me that what ever is going on in the head, that causes these attacks, it is effected by low and high pressure.

On a different note, Google have finally unblocked my computer site and unlocked it after trying to say it was spam.  How they came to that conclusion i don’t know but at least i can access it again so today i think i will do some more work on that site and hope my head eases as the day goes on.

Well with the day looking horrible outside i think its going to be another day stuck in so i need to try and keep busy and take my mind off my head, as the more i worry, the more attacks i get, i am sure. I cold be wrong, but i do think stress and tension plays a huge part in the amount of attacks i have in a day. Time to take my medication and relax while i wait for it to work. I’ll catch up with my blogs later today.

Fed Up..

Having pain in the head and being stuck indoors all the time takes its toll on a person after a while, i am sure its driving me mad. Any way, to pass the time being stuck indoors a few people may know that i created a blog all about computers, computer problems and their solutions to fix them. Computers have been my hobby since i was very young so i like to think i have a few tricks that i am able to pass on to others.

However GOOGLE has taken it upon themselves to block my account as they recon its is a spam account?, just because i update it 4 or 5 times a day they recon there is too much information being flooded through the account and have classed it as SPAM. I am not impressed as you can imagine. I have spent hours crawling around the internet finding the best pieces of information to share with people and this is what i get in return, all the hard work for nothing!

Ok i know its not a normal web site and is supposed to only be for “blogs”, but what is a blog if not a site where you can share your thoughts and ideas with others?

I can understand them being careful as not to allow people who intend on flooding others with marketing and sales junk mail to open blog accounts thus enabling them to flood Google users with useless marketing advertisements, but that's is not what i am doing. The information i place in the site is there to share, for everyone to gain knowledge and hopefully help a few people out who have problems with their PC’s. I have therefore contacted Google asking them to unblock my account but they tell me i have to wait 3 working days! Can u believe the nerve!

Well that's my ranting over with, you could say they have upset me a little after doing all that work just to have it blocked!

My head has been behaving itself this afternoon and i have been pain free for a few hours, i was going to catch up with a bit more work on the computer blog but that's not going to happen now. So all that's left for me to do is take my medication and try and get an early night to catch up with the sleep i have lost. for those of you who have been trying to look at the computer site, it will still let you in if you click the proceed button when the warning message comes up, i can only apologise and fingers crossed they will solve this little problem within the next day or 2. Lets hope they don’t try and block this site as well!

Finally Some Rest…

Well last night was a very long night! Attack after attack and no end of pain in site i thought i was dying ( a bit dramatic i know but that's what it feels like). On and off i think i must have managed about 2 hours sleep maximum. Every time i settled and started drifting off to sleep another attack would start to build and wake me up. I forgot how many times i started shouting at myself in anger and frustration.

As of 7am this morning the pain decided to ease off and give me a break (at last). I feel absolutely exhausted due to lack of sleep so i think i may spend the day trying to catch up, the trouble is it looks like its going to be another sunny day and if i get a PF day as well, i will end up just wasting the day away and i don't want that. I try and make the most of my good days and have to stop shutting myself away like this. I have decided to take up “Fishing” again, i used to enjoy course fishing when i was younger, and if i do say so my self i wasn't too bad at it either. So at the end of the month i will stock up on some fishing tackle and get out there and start up my hobbies again.  I suppose, as long as i take my injections with me and i go with another member of family i will be ok. I do have to look into a portable version of the Oxygen bottle, a smaller portable version so when i do go out on day trips i have something i can take with me for emergencies.

Well that's all for this morning as its time to take my tablets, lets hope the rest of the day is as good as the start!

Worst Day Ever….

The start of the day wasn’t that bad, a few attacks very early morning but seemed to settle down by 9am. I managed to get all my house work done and even decided to get out of the flat for a while. Walked up to see my mother today, was a nice walk, sun shining and a very light breeze, nothing out of the ordinary really. But when i decided it was time to leave and go home.. oh my god what a surprise! As i was half way between my flat and my mothers house the head started to play up. First the eye started to stream and then the pain began. The trouble was i had already had a few massive attacks early in the morning and had to take my injections. Normally if i have to use them i try and keep one for later in the day or towards the evening, but this time i didn’t.

A full blown attack had begun so i had to run as fast as i could back to the flat as i don’t like people seeing me when i am in so much pain and in tears, it was that bad. By the time i got to the flat i was already 10 minuets into the attack and the left eye had already closed, and the face started drooping and swelling. I then had to sit rubbing my head and massaging my neck for over another 30 minuets before it started to ease off. The worst thing is it didn't go completely, it left me with a very tender left hand side and every time i moved my neck or tried to do something the pain would return. As to how many attacks i have had so far today, well at least 10 so far and still more to come. As i am typing this the left hand side of my head is already building up and preparing itself for the next attack, and i have to go all night with no relief as i have used my quota of injections for the day. I have taken my tablets and some pain killers but nothing helps when its this bad, oh my god what am i supposed to do, how can i carry on like this, please god let them ease so i can at least get an hours sleep. I really cant wait to see the neurologist in October, i need something to help me when it gets this bad all the time, how can a human body endure so much pain surely its shouldn't be like this.

Anyway that's all i can manage for now as the pain is really starting to get to me, i promise i will bring my blog up to date tomorrow, lets hope its a better day!

Sleepless Nights..

So much for my sausage down the back idea with the spare quilt.

Last night was absolute mayhem, i kept waking up every other hour with an attack. Every time i got up, let the attack take its course, some times it would only last 10-20 minuets, but mostly around 45 minuets to an hour. I would then try and force myself to go back to sleep only to be woken up again an hour later with another attack.

I lost count how many attacks i must have had last night but i know there was quite a few and the pain level was very bad. usually i get a couple of small ones before i get the big one, like they are building up in strength, but not this time it seemed to be only the large attacks and yes they did increase in intensity.

I then finally decided i had had enough and was pointless going back to sleep so i just got up, took one of my injections and here i am. I have to say these injections are a god send, they are the only thing that will abort the attacks when they come. I have shooting pains down the back into the legs now, these pains are the after effects of the attacks.

I am sure they must make a nerve or something become swollen or sore as when the attacks finish i usually get the pains in the back or in the neck for the rest of the day and that can sometimes irritate the nerve or what ever it is that has becomes sore and ends up setting off another attack. The anti-inflammatorys i take do help a little but don't completely remove the pain so i have to be a little careful not to irritate it myself.

Time to take my medication for the day so I'll sign off for now and update my blog later in the day.

Blog Update 11-9-2012

Today hasn't been a bad day at all, the pain has stayed away and the head seems to be behaving at the moment. Ok i have had a few small attacks but nothing as nearly as bad as they normally are. It has given me the chance to get on with a few things and take my mind of all the pain.

For those of you who are into computers: http://voodoonetworks.blogspot.co.uk/ , this is my other blog all about computers, problems and how to solve them. I suppose being stuck indoors all the time has given me the chance to catch up with some work that i wanted to do. I have created a Facebook site also dedicated to the repair and service of computer systems so that any one who has a problem with their PC will be able to find a quick and in-expensive way of fixing it. Most problems on PC’s are normally caused due to software faults and are very simple to fix (if you know how that is) but there are the exceptions where hardware errors come into play, so i decided to create an online forum where users can explain the faults they are having and get expert advice on how to get it fixed. If you are interested then please feel free to pop in and take a look: https://www.facebook.com/computersolutionsuk

Anyway that's enough about computers and their problems as this blog was not intended for that type of thing.

Lets hope the day remains pain free, just have to be careful of not over doing things this time like i normally do when i get my “PF” days, as i call them, and end up setting off an attack because i have strained myself or because i have been running round like a fool.

Visit to the Doctor

Started the day a lot better today, actually woke up with no shadow this morning. I think all these early mornings (being woken up in pain) has messed up my body clock as i woke up at 4am, forced myself back to sleep as i didn't have any pain, and then woke up again at 6. You cant win! either you are being woken up due to pain or your body decides you have had enough sleep and wakes you up anyway.

My appointment with the doctor was at 9.50 this morning so i had to shift to make sure i got there in time. I did manage to get there but ended up having an attack in the doctors reception. A good thing really as it gave me a chance to show my new doctor how bad the attacks were and how quick they come on. I tried to ride the pain until i was seen by the doctor but i couldn't. I ended up running into the toilet and took my injection to abort the attack. By the time the doctor seen me i was at the end of the attack, but it did give her a chance to see the after effects of the attacks and the injection.

The doctor has now given me extra injections so i don't  run out and have to go a day with pain and no help. We also discussed my treatment and when my next appointment with the neurologist was. She has increased my tablets and i now have to increase them steadily every 7 days until my next neurology appointment in October.

The medication i am now on:

100mgs Pregabalin daily (50 in morning and 50 in eve) this is to increase every 7 days until i reach 175mgs twice a day (350mgs per day), Atenolol 50Mgs Tablet once a day (for my blood pressure),  80mgs Methadone Daily (to deal with my addiction to opiates), Naproxen 500Mgs tablets (twice per day for Inflammation in the neck from the attacks), Mirtazapine 45Mg Tablet one every Night ( This is to Treat the Bi-Polar/Depression), Omeprazole 20Mgs 2 tablets per day ( to stop me getting ulcers or bad stomach from medication), Sumatriptan 6.mg Injection 2 per day when required ( This is the only thing that aborts the attack). 

As you can see if i jump up and down i will start to rattle. It may seem a lot of medication but really its not when you think about it. Many people have asked me why don't you take strong pain killers? Well the answer to that is simple, firstly they don’t work with the attacks and secondly i don’t want to become addicted to another type of pain relief. Its nice to finally feel like the doctor is on your side.

Well time to enjoy another sunny day in Cardiff (cant see it lasting, will probably be raining by lunch) and hope i don't have any more attacks today.

Getting me down.

Another day of watching the clock in-between head ache attacks. They always seem to increase in the level of pain, and in how long they last, later in the day as apposed to having the attacks in the morning. On average a big attacks seems to last me between 30 minuets and an hour. I have had one longer than that i just gave up timing it after the hour went past. When you are in a lot of pain, screaming and banging your head it is very difficult in concentrating on something like timing or even trying to breathe properly. The body seems to have the natural instinct of panicking when it is in a lot of pain. Tight chest, shortness of breath and a feeling of light headedness is a sure sign of a panic attack building up.

It really gets me down having to go through this all the time, no matter what pain killers i take, no matter how much i relax it still comes and i still end up having these attacks all the time. I don't know why but this year seems to be the worst it has ever been. Normally towards summer and through out the summer i have loads of pain free days and very few attacks, but this year it doesn’t seem like it wants to settle down. I know as time goes on i will probably find the correct medication to put the attacks into remission, i just wish it was now.

Sweat pouring off me like a water fall is always the first sign i am about to have an attack. OK i always have the feeling of pressure on the head (the shadow) but it doesn't always mean i will have an attack. Sometimes i get the feeling and it just eases off after time and i am lucky as no attack appears, but most of the time its like 1 , 2 , 3, Pain! As soon as you get that feeling you know its on its way and then all of a sudden your t-shirt sticks to you and your trousers need peeling from your legs you break out in that much sweat you can ring your t-shirt out. Then the pain follows and off you go again. Its a never ending circle of pain.

I know why they are called “suicide attacks”, the level of pain makes you wonder if you are being punished for some reason, you suddenly become religious and start praying to god for them to end. “Why me?” you keep shouting as you rub your head vigorously trying to ease the pain but nothing seems to work. The bit that gets me is when i have the really “Bad Attacks” as i class them. These are like +10 on the pain scale, your eye closes and streams with water, your face starts to drop like your having a stroke and you get pins and needles in your left arm and neck. You think your about to have a heart attack but that's not what's happening. The pain is so severe  you think your face is on fire and melting. I would say this is the worst pain a human being can endure.

The worst thing is you are alone, there is nothing you can take to ease the pain, nothing you or anyone else can do apart from let the attack run its coarse.

And they wonder why i am always feeling down!! How much more can i take!?

Back to the old routine …

I had a brilliant sleep last night, managed to sleep rite through till 5am this morning before i was woken with my head playing up again. Was quite strange as i actually dreamt i was having an attack and when i woke up, i was just starting one. Maybe its the body’s way of telling you its about to happen by including it in your dreams. what ever the reason is its annoying! Its bad enough having to put up with them but to start dreaming about them as well, awww come on give me a break!
Looks like the weather is on the change again, a very grey and wet start to the day. I guess the change in weather is one of the main triggers of pain and i know i will have several attacks today as i can feel the shadow (the feeling of pressure build) on the left side of my head. Injections ready, tablets ready and Oxygen ready its crazy what i have to go through.
I am wondering though, about the oxygen?
Is it possible to use oxygen to actually abort the attacks? what i mean is if i go on oxygen first thing in the morning for a period of time would it actually stop me from getting the other attacks during the day? I think i will have to do some experimenting my self just to see if it does help.
Well it looks like another day locked indoors suffering and moaning in silence, so i will try and update my blog a bit more later. At least i managed a couple of days break from the pain and tomorrow i have another appointment with my doctor so i will be able to see if she can offer any help for the night time.
Until then its back to the grind stone, the pain is building so time for me to sign off….

Good Day. Bad Night…

With yesterday being a nice and sunny day in Cardiff, and today being the same it looks like the change in weather has given me the break i so needed from the pain. Unfortunately i have still been getting bad attacks during the night and early morning. At first i thought it was the cold, by leaving the small window open i thought i must have been getting a draft or something that was irritating the head. I then found myself laying on my left hand side and the pain started to build. It started me to question whether this is what is waking me up.

I took an old quilt and rolled it into a long sausage, laid it down the left hand side of me so i could roll over onto my back but not completely over so i was laying on my left side, I then went back to sleep. Low and behold i managed to sleep right through until 6am this morning and then had my first attack. I am not sure if its the only reason i am getting attacks during the night but it must be causing something, i know the morning ones are caused by the drop in temperature as i can feel the chill on the top of my head.

But laying on my left side definitely sets of an attack after about 20 to 30 minuets. It will be interesting to see if it still happens when i am having a really bad bout of attacks, it is something i will have to point out to the doctors and specialists.

Its mad! Its not until you have a problem you start noticing little things that are going on, such as a feeling you get just before the attacks come on and now the fact if i lay on my side the attacks will start. I wonder what else i will discover on this journey lol.

Well its time to start the day, get some breakfast inside me while i am feeling good.

Normally i eat very little as the pain seems to take away your appetite. But trust me i make up for it when i am well.

A Manic Day…

Yesterday was the first pain free day i have had in almost 3 weeks.

At last i managed to catch up with the house work as normally i don't get a chance either i am in so much pain i cant move or when i get my pain free days i am so depressed i don't want to get out of bed. It makes a change i am actually in high spirits for once. Cleaning, ironing, washing and dusting, these are all things i normally put off because of my mood swings but for once i just got on with it. Music up full, hoover out and duster in hand, oh my god what a lot of work i did yesterday. Completely knackered myself out.

Was good in a way as i managed a good sleep, not as good as i could have been as i was up at 4am with another attack. This time it was set off from laying on my left side. I have noticed sleeping on the same side as my attack seems to irritate it . It may be that pressure from sleeping on that side builds up during the night or maybe its just because i am conscious of the pain on that side of the head all the time so i might be setting of the attacks from worrying during the night. As to what are the actual triggers are i don’t really know.

I have kept a record of my attacks but there doesn't seem to be a pattern apart from they always become worst in the evening and the night and that extreme cold will also set me off. I suppose this IS a kind off pattern, but i think its more to do with the weather and the changes between high and low pressure.

Anyway, apart from the abrupt wake up call this morning i don't seem to have any shadows at the moment and i don’t have any of the small electric shocks up the back so it looks like i may have another pain free day on my hands ( i sure hope so ).

I did try and get out the flat for a bit yesterday but only managed an hour and that was to go to the shops as i needed shopping urgently. Shutting myself away isn’t healthy and i do need to get out more but i am so scared of getting the attacks outside and then not having help at hand is also an off putting thought. I will try again today to get out for a bit as the weather seems like its going to be nice again  so i can’t shut myself away. Even if its just getting out the back and relaxing in the sun for a bit, even that would be better than stuck in doors watching the time tick away, worrying what's going to happen next.

Just a little Thank you!

Since this all started years ago i never thought i would be in this situation now, at first they was only like having migraines once in a blue moon. I only ever had the painful attack once every 2 or 3 months, then It started to become more and more regular, changing from a couple of time a years to a couple of times a month and then a few times a week. At that point i was in hell! I thought i had done some thing bad to my head and caused irreversible damage. I basically blamed myself. I thought i was the only one with this problem and why was i being punished, why was there nothing anyone could do, or so it seemed at that point. Not only was i going through hell physically but also mentally too. I started to self medicate as i couldn’t get strong enough pain killers from the doctors as they kept on giving me migraine treatment. I felt like there was no return, there was no one that COULD help me and became very low and depressed (suicidal as well). Then the last 2 years the pain increased again! I was convinced i was dying. Having attacks every day and not just one but a number of attacks was to me the sign that what ever it was was going to finish me off.

When i finally got the diagnosis it was like a huge weight had been lifted from my shoulders and the worry wasn't so bad anymore. I still felt like i was alone in all this but there was a glimmer of hope as they could help treat the condition and teach me to control it with pain management.

Then when i went to my chemist ( who is brilliant and a mild sufferer, so i found out), he explained to me there was a support group on line and suggested i get in touch with it. So being into computers i couldn’t believe i hadn't looked for it before, but saying that i didn't know what i was looking for back then. Anyway i searched Facebook and found their web site. I joined it and found so much information about the condition, the treatment and the support that is available out there.

I wasn't alone no more! The “Cluster Headache Support Group” on Facebook has become a life line for me. Some where i can go and talk to others who have the same condition and actually understand what you are talking about and the amount of useful information with regards to treatments and how to try them and take the treatments correctly. This site is amazing, a big thank you to all of the members that have shown their support at this difficult time.

I really now know i am not alone….

Pain Free Days…. become busy days

Well after a bit of a dodgy start this morning by being woken up again at 3am with my head and then a big attack 20 mins later, its has finally settled and i have a pain free head so far, no shadows , no little shooting pains. HURRAY!

Its times like this that i actually cant believe that i go through all that pain. When ever i get a few days pain free i start feeling positive and that i know eventually i will be able to control this demon, as long as i keep my appointments with the specialists and push the doctor for help with the pain control i should be able to live a normal life after all.

It is scary mind you, not knowing what is the exact cause of the pain and where they come from. Also the level of pain sometimes scares you into thinking you are going to have a heart attack or worst a stroke.  Every time i go through it and get the big attacks i think to myself, “ will this be the last attack?, big enough to kill me?” I know it wont and that the only way is if something else was to happen like a stroke etc. but when you are in so much pain it is very hard to think like that.

Any way enough of the doom and gloom today as i am going to make the most of the pain free time, so i won’t be updating till late (i hope) as long as i stay pain free. Fingers crossed…. Time to catch up on what i have missed….

At Last a bit of a Good Day!

Well a shaky start in the morning has turned out to be a good day after all. The pain has eased away and no shadow at the moment

I have been pain free for quite a few hours now and hopefully will be pain free for a while. I hope they have stopped for a couple of days but it is so hard to tell. Due to the fact that they can come back at any time and when they do they don't always give you that feeling of pressure building that warns you they are on the way. Some times it just starts from no where and within seconds you can be in so much pain you just cant believe how fast it can come on. That is one of the reasons i think pain killers are just no good as none of them seem to work fast enough or are strong enough to cope.

Well lets hope the day continues like this. When i have my good days i try and get as much done as i can, catch up with shopping, bills and chase up things that you have had to put off because you are locked away because of the pain.

Something else that i have noticed about the attacks is that if you exhaust yourself or put a lot of strain on the muscles in the neck or left arm it will aggravate the condition and bring on an attack. So its important not to be stupid and do things that will cause the pain to come back.

Well i have lots to do and its getting late in the afternoon, so fingers crossed my day stays pain and trouble free.

Talk later 

If you think you may suffer from CH here is a brilliant checklist…

http://www.docstoc.com/docs/104818078/Cluster-headache-(PDF) 

I have included the web site address in case you wish to print it off to take to your doctor with you.

Cluster Diagram–Shows What happens to the head and neck…

I found these brilliant diagrams on the internet that show exactly what i suffer.

Another Strange Day…

Yesterday was a strange day, started the day with a couple of massive attacks and then nothing. Pain went, no shadow on the head or feeling heavy, no pain shooting in the back. I suddenly thought, oh my god they have stopped fingers crossed they stay away. But unfortunately not later that evening whilst sat in my neighbours flat, the beast suddenly attacked again. I had to grab my phone and stuff and run as fast as i could up the stairs to grab my injection and collapsed into the chair and strapped the oxygen to my face.

When they first told me about the oxygen treatment i wasn’t to sure about it. I thought to myself, what on earth… just breathing pure oxygen is going to take away or stop pain are they crazy but low and behold.. its does work! Not completely mind you, it doesn't stop the pain altogether but since i have started using it i have noticed a huge difference in the length of time the attacks last and has halved them. To me that’s a good result!
The doctor started me on PREGABALINE tablets, starting at a small dose and increasing them slowly over time. They are not for the main pain but are supposed to help and hopefully eventually build up some sort of barrier to send the attacks into remission, or something like that. I haven't,  as of yet, seen any difference in my attacks because of taking the medicine but its early days yet, it has only been a couple of weeks and i need to wait at least a couple of months to see if there is any results.

Well was woken up again early this morning by yet another attack, it is awful draining on you when you wake up so early and have to fight the pain, thank god for the injections at the moment.

Well i think that's it for now, i may even try and get a couple more hours as my head has calmed down.

It feels like its killing me…

All i can say is OWWWWWWWWW!

First its the heavy feeling on the side of the face, then you suddenly move your head to look at something and get a sharp shooting pain from the front of your head shoot through your eye to the back of your head. Then the pain builds, gets stronger and stronger its changes from sharp to hot, like your face is on fire burning and then becomes sharp again as it becomes even more painful. You start banging your head with your hand , rubbing the left hand side vigorously trying to cope with the pain.

Your breathing becomes erratic because you are in so much pain so you try to concentrate on that instead of the pain but its impossible, the pain then gets even stronger ( and you think at that point you want to die) you cant believe that this level of pain exists in life, how the body can cope with so much its unbelievable, you are praying to god for it to stop even though i am not really religious, at times like this i pray there is a god to help me through it.

You then realise its only been 10 minuets and you have ages to go, the pain gets so bad you cant even walk , you cant see out of your eye as it is swollen shut or its pouring with water. You try to catch a breath but the pain just feels like it is getting stronger and stronger, you are passing up and down, shouting out in anger and in pain, screaming for relief. There is no way you can stay still when you get this level of pain, trust me i have tried.

The pain gets to such a level either 2 things seem to happen to me, either it peaks after about an hour and then suddenly disappears just as fast as it came or i seem to pass out when it gets to certain level as if the body cant take any more and shuts down. Its not for long and i get this horrible ringing in my ears after it but i know its for a few seconds, and then it disappears. Really strange how fast it starts and how fast it goes.

Now the attack is over, i get a horrible feeling on the left hand side of the face, a slight numbness and ache after all the pain. I get little shooting pains down my back for hours after and in my neck, oh my god it feels like it is full of grit, grinds and hurts like hell afterwards. This is the point where i can get secondary attacks as the neck pain seems to irritate my head but if i can cope and not stress about the neck it will just go away.

There only seems to be 2 things i have found as triggers that will set my head off and that's extreme cold like snowing or blowing a icy wind on the face seem to irritate it so i tend to hide from bad weather and the rainy days, when low pressure or a change in the weather seems also to set it off. Other wise it will just come when it feels like it with no warning.

I don't just get the big attacks i also get a number of small ones that to me feel like tooth ache and i can put up with them ( i am so used to the pain now after all these years) but to others would probably be eye watering pain. The small attacks i can deal with and pain killers can sometimes help but when the big ones come and i get at least 1 a day at the moment but sometimes as many as 8 in one day of the big attacks, nothing seems to stop them.
I have to stop because it is starting again so i need to get my injection, this is what i have to go through each time the attack comes … please god help me

Having a Down Day!

Well for the first time in 2 1/2  weeks i actually got a few hours sleep last night! God i feel so much better, not falling asleep on my feet. I am still feeling low and depressed. Mind you it doesn’t help that i suffer depression as a norm.

Apparently i have suffered Bi-polar depression all my life and have been told that i was diagnosed when i was very young after my mother found me hanging by my neck in my wardrobe at the age of 9. (the things we choose to block our are amazing). The depression has never really been an issue until i returned to the UK from Cyprus. I suppose due to the hot weather you don't get as many low days as you do over here.

It seems that my condition (CH) has made my depression 100 times worst and find i have to battle daily with the low feelings of being helpless and alone.

I try my hardest to keep a positive outlook on life but as you can imagine it is very hard to stay that way. Every now and again i get days where every thing seems so hopeless and endless. It is like there is nothing i can do apart from accept my condition and put up with the daily pain.

yet i do get days where i can see that they are helping me but still feel like more could be done. I think that the waiting around for hospital appointments doesn't help when each time you rush up to accident and emergency with so much pain and then they tell you to go home as there is nothing they can do as it is either migraines or a trapped nerve. (God that gets my back up, especially now the specialist has diagnosed me!)

And then there is the loneliness of being stuck in all the time. I know this is something that only i can resolve as it is my own worrying and fear that i shut myself away all the time. It is so hard to go anywhere when you are expecting a big pain attack at the time, and because they last for so long its embarrassing when you are sat in the middle of town screaming your head off in pain, then people approach you to help, but all you want to do is be left alone and to be somewhere safe that no one can see you crying in agony.

You automatically push people away so that they don't see you in this condition, you make excuses when invited places so you don't have to travel anywhere and then you don't have to worry about the attacks you just let them happen.

If it wasn't for the computer and mobile phones i wouldn't even be able to stay in touch with family that are close to me and help out when times are low.

Its amazing how much you can rattle on when you are feeling low like this so i will take a break today. For anyone actually reading any of this nonsense i wont be updating so much when i get my low days so please bare with me. I will try my hardest, if i can make just one person realise that there is this condition and that there are many suffering people out there who cant get their voices herd, then all this is worth it!

Trying to keep my chin up, will talk again soon..

A Strange Feeling….

Well i actually became pain free for a couple of hours this afternoon so i decided to pop up the shops to get some milk. Now considering the shop isn’t really far from me, about 10 mins walking straight up the top of the round and down the side of the church and your there, you would have thought i had just run the London marathon!

All of a sudden i burst out in to sweats, and not the normal kind of sweats from running or exhausting yourself, a very cold sweat that poured like a tap running. My t-shirt became see through (trust me to wear white) and my tracksuit bottoms was sticking to my legs. The shop keeper must have thought what on earth….

As i then walked back down the road towards the flat all my energy suddenly disappeared and i felt as though i was going to pass out or collapse.   I stopped to compose myself for a few moments and then just walked home as quick as i could. It started to scare me, as i have never felt like this. As soon as i got home i suddenly began to feel very tired, to the extent that i was having trouble keeping my eyes open whilst i was online explaining to my mother what had happened.

I now believe i know what had happened, complete exhaustion. Where i have been awake almost every night for the last 2 – 2 1/2 weeks with attacks during the night, my body decided it was time to catch up on some rest and was telling me to get some rest a.s.a.p. ( well at least that's what i hope it was).

I did managed to get an hours sleep only to be woken again by pain unfortunately not long but enough to recharge for 5 mins and stopped me feeling so strange. Ill try again in a while and see if i can settle down. I think, that thinking LOL, about the pain is half the battle. If i can think of other things and not worry so much i might just get some sleep.

Well time to sign off again as the shadow is here ( a feeling of heaviness on the left hand side of the head) witch normal proceeds a big attack so it could be a night of head banging again for me.

Peace

Blog Update–Changes to Life

At last i got the date for my next appointment at the Heath Hospital with the specialist. So far its only been 6 months in between appointments! Not a long time to wait is it? (ya laffin aren't ya!) Well the main thing is i got it and gives me a chance to ask some questions that i really need answers to.

(1) Why have i got swelling around the scar on my head where it was split open. An if i didn't get the CH from the damage how come its on the same side and seems to making the attacks worst.?

(2) OK if the damage to my head has only aggravated a condition that i already had, how long have i actually had the condition for?

(3) What, if anything am i able to do to help me get sleep when i am having so many attacks?

(4) How long will these attacks continue or will they reduce over time after treatment?

You know i am actually sitting here typing, thinking of things i need to ask the specialist? I didn't realise i have SO MANY questions that i need answers to. The change to my life and my social life is beyond belief.

Before the attacks began:

Owned my own company (computer in Cyprus)
Used to have BBQ’s every weekend down on the beach.
Lived in Cyprus in a nice beach villa
Married to local woman (Sofia)
Worked 6 days a week
Run my own Night Club at weekends
Used to Teach computers for the military (54th Army Education Centre)
Enjoyed Fishing
Regular Sports Diving in the Med
Attended many business seminars to promote IT in Cyprus
Visit Family regular (mainly the in-laws)
Used to enjoy hunting trips with friends.

 

After the Attacks began:

Moved back to Wales, UK. due to no medical support in Cyprus unless insured or private.
Divorced for Partner (She couldn’t take the stress and the life style sudden changes)
Live alone in Block of Flats
Constant medication – resulted in self medication and heavy addiction to pain Killers and opiates
Cant Work due to attacks so now on Benefits
Don't go out, to scared to in case of attack.
Don’t Visit People or socialise with friends (embarrassed when attack comes)
Always in pain so don't seem to chat to people ( seem very closed off)
Now Hides away from the world

 

As you can tell the changes to my life over the last 10-25 years have been very dramatic. I went from being some one with loads of energy who used to love getting involved in any project to someone who cant even bring himself into going shopping at a supermarket that is 5 mins down the road from him.

I am realising that i am not the only one with this problem and that there are others out there who are suffering just as bad, if not worst, as me! But there seems to be very little support and very little known about the condition. I don't know what else to do apart from wait?

Brilliant Poster

 
These are 2 posters that were sent to me by a fellow CH sufferer from The Cluster Headache Support Group on Facebook.
They have been great in the support of sufferers and care'rs alike. Please pay them a visit and show your support.

A Scary Day!

Another day of pain on and off like a light switch. Oh my god how am i going to cope with this all the time. Every Day for the last 2 weeks with no break ! Normally i get a couple of days rest in between bouts of attacks. I am soooo Tired.

Anyway, the more time i spend on-line reading about CH and other CH sufferers, the more i realise i am not alone in all this ( in one way this is a comforting thought) but also makes me realise that there is NO CURE for the condition. I have read so much about different treatments and medication people have been trying but one thing is common of all the different cases and that is EVERYONE who suffers is DIFFERENT. There are no 2 people with exactly the same types of attacks or attack patterns. There are slight differences in everyone.

The level of pain always seems to be the same, seems to increase with each attack until it maxes out during the evening and through the night. And the type of pain is always the same , on one side of the face and behind the eye. This must be the position of one of the main nerves i think, and as we get the attacks it must swell up or something like that anyway.

Since the attacks started i haven't seen much physical signs of damage apart from  a slight droop in the left hand side of my face and a slight reddening of the skin tone on that side of the face. As time has gone on i can now see swelling along the scar on the top of my head so i think that this swelling may be causing pressure on the nerve and causing me more attacks than is normal. I am only guessing and have to wait till mu hospital appointment but it wouldn't surprise me to find out that is what has been going on for the last couple of months causing my attacks to increase.

I have had 3 massive attacks this morning already and they have been to the extent that they are now scaring me. When the pain comes even my chest is getting tight as the panic starts to kick in, and then my breathing gets slow. I do try to keep as calm as i can, and the oxygen treatment the doctors of starting helps. It does help to have an oxygen bottle at home, makes me feel a bit safer i suppose.

The pain is like someone has taken a hot poker and not just poked you in the eye, but are pushing it slowly through your head. That is the only way i know of describing the pain. Each attack lasts anything up to and hour or and hour and half. After each attack has happened it takes a couple of hours to recover before other pains like the back pain and the pain in your legs when you walk, start to disappear but by the time you are starting to get comfortable there is another attack on the way.

How people live like this i don’t know – its really getting to me, its really getting me down!

Another Day of Pain..

Yet again i have woken up at 2am, 3am then finally at 4am and just had to get up as the pain was too much.

Getting to grips with this CH is a lot harder than i thought. Every time i have an attack i can take an injection to stop it, however! I can ONLY have two (2) injections in a day as they pose a high risk of heart attack. But the trouble is when you get up to 8 or 10 attacks a day, when do you use your injection?

I tend to use mine first thing in the morning when i wake up so at least if its a painful day i cant at least start it pain free. Then i try and keep my second injection till late at night or as late as i can. At least i can get a couple of hours sleep before they start again.

I have to ring the hospital today to confirm the appointment date for my next check-up and i think i should ring the doctor and make another appointment with her as the pain is getting a bit much. Mind you she seems to only believe half the story, there is something that when ever i have an appointment i cant quite put my finger on it. It like she don't believe someone can be in that much pain all the time. I wish i was fibbing GRRRRRR gets me annoyed sometimes lol.

Waiting for the Hospital..

Wey Hey!!!  Got my new appointment through for the neurologist so i can get some answers.

I cant believe it has so far taken 10 years  to find out that i had a problem with my head, then 4 years to diagnose the problem, 2 years to realise its a massive problem and 1 year just to get seen by a specialist.

People say that the UK are 2nd to none when it comes to the National Health as no other country does it. Well i CAN see why! People would rather save up and purchase medical insurance and health insurance rather than gamble with their health  waiting to see specialists that they may end up seeing to late so instead they spend a fortune over a life time for that one day they will need to see someone urgently. It all makes sense when you have to wait for treatment the length of time i have had to wait.

Its a Start

Well i decided today to actually make some use of the amount of time i waste on the computer and actually write a blog. As to what i will put in my blog i am not quite sure yet but i know i will think of something in the end. I love computers and messing about with them, including repairs and upgrades and i love a good challenge when it comes to fixing problems.

I suppose i can  do a bit about computer repairs and the solutions i find as i go. Hey "compute solutions UK  sounds like a good name for it. We'll all have to keep an eye out on Facebook and see if i can get it up and running.

I best tell, who ever reads this, a little bit about myself.
I am aged 39 (at the time of starting this blog) and living alone in Cardiff. I am suffering with a very rare condition that is called "cluster head aches"  and have attacks on a daily basis. Each attack is like having a stroke and is the most horrific pain i can imagine. Why they call them headaches i don't know as it is more like someone ripping your head open or smashing it with a hammer. It enough pain to actually consider suicide several times.
I ended up with this condition after having my head split open in Cyprus after coming out of a night club (but that's another story) I am told i have to put up with this condition for the rest of my life and that the attacks will go into remission for a while but will eventually come back and the only way to deal with the attacks is being on extremely strong pain killers, medication for the nerve and oxygen.
OK i understand i have to learn pain management but it does get to me when i cant even go into town to browse round the shops or even take a walk in the park on a nice day due to fear of having an attack with no help around or no medication to abort the attack.
As i am typing this it is just getting to me thinking about the condition and the change it has made to my life. I no longer have a social life as i no longer go out from this flat.
Well i think thats about it for my first blod and post as i am new to all this but will def keep it up as i dont have anything better to do.