CH Posters!

These posters were designed by the same person that has been doing all the add work for CH Support on Facebook, I have to say although the one with the eye IS a little graphic and i can see why they removed it to make the new one, all of these posters clearly show how painful these attacks we have are and are brilliant, well done! Spread them around and help to raise awareness about this rare and disabling condition. 

Click on image to enlarge

 

Anyone looking for more information on Cluster Headaches and how to recognize the symptoms please visit:

http://www.clusterheadaches.com/ , http://clusterbusters.com/ , http://www.ouchuk.org/html/ , http://www.clusterheadacheinfo.org/ , https://www.facebook.com/groups/CHSupport/ , https://www.facebook.com/groups/17789934480/

All of these sites have great resources and information with regards to the CH condition and how to treat it and help to control the attacks. Although these sites can point you in the right direction in treating your condition always check with your doctor and always get an official diagnosis before using any of the treatments listed within these sites.

Choose between the Devil and the Beast?

Again i was lucky yesterday with no attacks appearing until late in the day. The attacks seem to have reduced in the number that i get during the day. Not only have they reduced but it seems like they don’t start playing me up until late afternoon or early evening and the bigger attacks seem to be late in the evening and early hours of the morning.

Yesterday i had a meeting with my doctor, luckily it was in the morning so i didn't have an attack when i was there but i did have a depressive bout and a bit of a break down. As we discussed the medication i was on and what was expected in the future it just started to get to me and i couldn’t hold it back no matter what i tried. My depression has been all over the place the last few weeks and i feel like a yoyo with my moods constantly changing up and down. I have never cycled through so many feelings so fast before.

One minuet i am fine and i can do anything. I can fight this illness, do the things i want to do and go about my normal day with out any problems at all and then there are the other times, when i can’t even go out of the flat door, close myself away because i don’t want people seeing me when i have an attack and when i am feeling so ill and helpless. I cant even cope with the little things. Even small thing like spilling your coffee seems to have me on the edge of a break down when i am feeling as low as i do sometimes.

Well, all this was reported to the doctor so she has now decided to freeze my medication for a couple of weeks until either the depression settles and stops yoyo-ing or we hear what to do from my Neurologist. She is worried that one of the main side effects is depression and as i suffer bi-polar anyway it could be making it worst. I understand her feelings but at the moment i thought it was more important to get to grip with these attacks. I thought the medication is actually having an effect and reducing the number of attacks i get so increasing the dosage as planned should eventually have these attacks under control, i hope so anyway. I understand that my depression could be made a lot worst by this medication as well so its hard to choose between the devil or the beast.

Lets hope my moods start to settle a bit after a couple of days. I am sure it is just everything that has happened over the last couple of months that has made my depression worst and aggravated a normally controlled condition and caused it to yoyo the way it is. Anyhow, i am feeling a lot better today and hope that getting it all of my chest is the first step to getting it back under control again and it won’t last long so we can get my medication back on track.

Be safe! Not sorry…..

Well yesterday wasn’t as bad as i was expecting, I didn't have any other attacks through the day and the shadows that i normally get seemed to ease off during the day. It was still bitterly cold yesterday so we are definitely in for a very cold winter this year i recon , time to wrap up again. It wasn’t until i decided to go to bed, then after i got my self all warm , jumped into bed, covered myself up so no cold could get in then all of a sudden my head went.

The pain started at the top of the jaw this time instead of behind the eye. It does sometimes start at the jaw and this is how i was fooled into thinking it was a tooth nerve that was causing all the problems. The pain increased rapidly, a lot quicker than when it starts behind the eye but the effects are the same. My eye started to stream with water and the eye began to close whilst the side of my face began to droop as usual. Then came the pain at the top of the head stretching from the front to the back and into the neck. By the time i got up and grabbed my injection i was already in a state, each time i took a step a sharp pain up my back and along my spine kept me from moving too quickly. I took my injection and then sat in front of my electric fire rocking back and forth with the pain trying to control how sharp it was by massaging my head at the same time.

As soon as the injection kicked in you could feel it attack the pain and start to numb the areas that were hurting so badly, it is amazing at the speed these attacks come on and then when it is over how quickly they just stop again. Its as if someone has flicked a switch. I didn't have any other attacks apart from that one yesterday and my head is feeling ok today, so far!

I am just hoping this cold weather doesn’t keep causing attacks to start as its going to be a long enough winter with out the cold playing its usual part. I don't have any shadows this morning but i have been fooled like this before and the last time i thought i didn't have any shadows and went out into the cold i ended up in agony for over a week so i think i will be safe rather than sorry and still wrap up with my woolly hat and scarf.

Chilly start signals winter is HERE!

Another cold night with the temperature dropping really low again signals the start of the winter also the fact that the clocks have gone back an hour and the evening are getting dark so early again. I managed to get a good nights sleep despite my head trying to play up all night. It kept building in pressure on the left hand side and every time i thought an attack was about to start it would just die down and ease off. It may have been the fact that i was by the electric fire and every time i thought an attacks was coming i would keep my head close to the fire not close enough to feel the burn but enough to feel the heat warming up my head.

It could be another way of controlling the beast! Heat has always played a part in me controlling the pain when it comes. I sometimes use heat as a distraction, what i mean by this is when the pain attacks are severe i place my head close to the electric fire so that the heat  actually has a burning feeling on the side of the face. I make that burning feeling the same level as the pain by moving my head close to or away from the fire. I would then wait a few moments and then slowly move my head away from the fire reducing the level of heat and that in turn would help the pain level reduce at the same time.

Well i don't know if it the medication or if i am coming to the end of a cycle, but the attacks seem to have reduced in the number i am getting during a day. This has happened before, normally as the winter ends and the nicer weather begins, it has never happened at the start of winter as this is the of the year that the attacks become worst. I thank god for the reduction at the moment as i know what i am in for over the next couple of months. It could just be the end of one cycle and a small pause before the next cycle begins. I am praying it is the medication and i think it is something i need to point out and discuss with the doctor.

I have my woolly hat to keep my head warm when i am out and about so i should be ok. A good scarf to cover the face if the wind really blows like it did when i went fishing, and of course make sure i wrap up so i don't catch another cold! The runny nose has now finally gone and the bad head but the sore throat is still there and i am getting stomach problems as well so i will still try and take things easy today, Rest until i feel 100%!

Looks like it cost me more than a day ticket!

I admit that i love my fishing but yesterday was a trip too many. It was blooming freezing! The wind was like ice when it blue on you and the temperature couldn’t have been more than 5 degrees. Even though the sun was out! I was wrapped up well but that couldn't even keep the chill out.

I was VERY lucky not to have an attack yesterday as the cold could have easily set one off but i managed to keep my hat on all the time i was fishing. With that wind and temperature there was no way i was taking it off. If i started to get too cold i could duck out of the wind in my shelter witch i might add was taking a battering from the wind. I did have a couple of twinges or shadows where i thought t was going to start but it just seemed to stop after a while. I took my injections with me just in case i needed them, better to be safe than sorry, lucky i didn’t.

It wasn’t totally terrible and i did manage to catch a couple of fish, even though they were only small, at the start of the day. I think it was way too cold. When i got back home my neck was killing me. After i managed to warm my self up i started to feel ill. My nose wouldn’t stop running and for some reason my neck was aching. Its the same place when i get attacks so it started to concern me a bit but i was luck and no attack came till about 6.30 this morning. It was only small attack and i was able to control it with oxygen and my injection. It was still strong enough to make my eye close and head swell up again though.

I am feeling really ill today. I think i did catch something big fishing yesterday, a Cold! My head is shadowing something rotten and i can really feel the pressure on the left hand side of my head. I am for sure in for some BIG attacks today as i have felt like this before and it wasn’t much fun last time. The cold always has this effect on my head and with the temperature dropping over the last two days i think its the start of the Winter season. My god i only just realised the clock has gone back an hour! I could have had an extra hour in bed, well wrapped up on the sofa because of my attack this morning.I am daft sometimes, i cant believe i forgot and i was only talking about it with my mum the other day, on Friday, my memory is getting bad.

Well it looks like today is a day of staying wrapped up on the sofa and plenty of hot drinks. Try and shake off this cold as fast as i can so i don't have to suffer the horrible head that goes along with it. Looks like my last coarse fishing trip of the year cost me more than a day ticket this time and if i do any sea fishing during the winter it will be with thermal clothing and artic condition protective jackets and hats.

Good start to a fun day!

I continued to have some small attacks yesterday during the day time, again when i was out shopping a full blown attack hit me, the beast doesn't care where you are! It was as if someone had walked up and punched me in the eye. The eye started streaming with water and a shooting pain straight through the head. I quickly took my injection to abort it but as with some of the attacks it took a little time to stop so i sat on the fence outside the shop rocking back and forth holding my sleeve against my left eye.

I lost count how many people actually came up to me and asked if was alright and if they could help. It was nice to see that they are so supportive when you are in trouble but at time like that all you want to do is be left alone. About 10 minuets passed and then the injection kicked in, it made me a little breathless but i was ok to jump on the bus and get my self home. times like that are scary and i hate being in that situation. I am ok when i go fishing however as it seems to keep me calm and if i do get an attack i can just hide in my little cave (an umbrella with sides you can pull down to hide away from others).

Well i was woken again this morning, this time at 1.30am, it gets earlier i am sure. I am so glad i decided to sleep yesterday afternoon early as i am off fishing today at the crack of dawn. I wasn't actually woken to an attack i just suddenly woke up, eyes wide open and not feeling tired, well maybe just a bit., but there is no sign of an attack. I don’t have any shadows building and no pain in the neck. It could be just the excitement of fishing kicking in but i think it also has some thing to do with the cold as the temperature dropped during the night very low and i could feel the cold on the top of my head. Yesterday when i got the attacks it was a chilly wind blowing in my face and i had forgotten to wear my hat. Well i wont be making that mistake today.

It looks like this will be the last fishing trip for coarse fishing this year as the cold weather is setting in and i wont be able to go out with my head. the last few fishing trips with my family have been god sent. They have helped me keep busy, keep my mind from worrying too much and helped me to stay calm whilst coming to terms with this illness, I know i have a journey to go on before they find the solution but i know they will soon and i will be able to get lots of fishing in next year. I will probably start the year earlier than normal. I made a decision the other day and make a go of this Tour of Fishing around Wales. I figure it would take me 3 – 5 years to be able to fish almost all the lakes and rivers in wales so if i work from here and slowly spread out, travelling further each time i will do it eventually and will record the whole thing online.

Hey! my parents and even behind me so i got no excuse. I refuse to let this illness stop me! I may even look out for a sponsor but i haven’t a clue where to start or who to speak to. I even wouldn’t mind doing  this for charity or to raise awareness for the illness and to get people to recognise the support groups. All i know is i am definitely going to do it as its a sport i love doing, it seems to help me cope with things and gives me a goal. Well it is not long before i get kitted up and am off fishing so fingers and toes crossed for a nice days fishing and hope its a pain free one!

Woken with an attack from hell! OUCH!

I was hoping that the pain free days would last and i would have more than just a couple of days break in between attacks. I managed 4 days total this time with out any incident. Then at around 2.30am this morning i was woken up by what i cam only describe as an attack from hell.

I could actually feel some thing building in my head last night. It was like it was trying to shadow yesterday but wasn’t quite strong enough and kept disappearing again. When it hit me this morning it was if someone had run into the bedroom and hit me round the side of the head with an bat. My god my ears were even ringing in pain. The amount of sweat coming off me was unreal, the bed suddenly became soaked so i had to get up. In turn, where the sweat had soaked not only the bed but my clothing as well, i started to shake and  shiver as the cold hit the sweat on my body and i could feel it like it was exaggerated, like i was placed into a freezer. I rushed into the living room, turned on the heater and sat there warming till i stopped shaking.

I took my injection at the first sign of the attack as soon as i woke up but the injection wasn’t helping as much as it normally does, again! It’s not every time the injection is overpowered but when it is you know you are having a bad one. All i could do was massage my head and rock back and forth in screaming agony in front of the fire warming up and waiting for the pain to eventually stop. It seamed like it was carrying on forever, all i could do was pray to god for the pain to go, but to me it felt like it was just increasing every second. I actually thought this was the attack to end all attacks, the one to finish me off. Just as i was loosing all hope it stopped, as quick as it started it was gone. I looked up at the clock, when i came in it was 3.35am and now it was 5.05am. It had gone one for over an hour and half but to me at the time it felt like it was forever.

My eye is still a little sore and the top of my head is throbbing and my neck feels like it has a golf ball in it but for the moment i am again in control and have no pain. The shadow or feeling of pressure is there constantly so i know its not the last attack today, i have to take it easy as not to aggravate it and start another one. The cold is the biggest trigger for setting off attacks so i am hoping the weather is going to be kind to me this winter but i have a bad feeling that we are in for one heck of a cold winter. When the “real” winter kicks in i am going to be in agony i cant tell you so i have to try and take as many precautions as i can. I have bought a couple of woolly hats to keep my head warm and i have a real thick woollen scarf that my neighbour actually knitted for me last winter to help me keep the cold out. I think i am prepared but we will have to wait and see.

Well even though i have it under control at the moment i can feel it trying to start to build again. I know i wont have another attacks for at least 20 minuets so i think its time to jump on the oxygen for a while and see if that helps to reduce this shadow feeling.  

Thank God it’s Lasting this time!

Thank God! At last i managed a full nights sleep with out being woken up constantly in the early  hours. I actually managed to sleep right through till 8am this morning witch is brilliant for me, especially at this time of year when the mornings are becoming so cold.

I am so grateful of a proper nights sleep at last. I thought i was going out of my mind. For three days i didn't get any sleep. I just kept tossing and turning in bed only to get back up a few hours later as i couldn’t drop of to sleep, it was crazy. i do know that sometimes it can be the medication you are taking that can cause problems with your sleep pattern but i know that the medication i am on doesn’t have any effect on my sleep so i couldn’t work out why it was happening.

Well at least i have now managed a full nights sleep, i feel so re-charged and full of energy, what a difference it makes. My depression has stopped playing up as the last few days i just kept breaking out in tears at the slightest thing. I know it was due to tiredness and being run down that was causing it, but when you just CAN’T get to sleep and, there is nothing you can do about it, you just feel constantly emotional all the time. Its crazy the effect tiredness has on the body.

We’ll i am really made up at the moment as this is yet another day being pain free and attack free. I know that it doesn’t usually last long but just lately this is the longest period of being pain free i have had in a long time. I am REALLY praying it lasts, especially after the weekend as its a Fishing weekend and probably the last we will be able to organise until next year now. The weather has been saying it will be fine all weekend but is now looking promising for Sunday rather than Saturday but hey, i may even go both days this weekend.

Pain free and still going strong! Shame about the sleep..

I am loving the fact that after my head has been so bad lately i am finally having a few days break from all that pain. The trouble is i am still waking up at early hours and not sleeping properly during the night, tossing and turning all night long. My eyes are feeling sore all through the day because i just haven’t had enough sleep during the night. I am constantly feeling tired and run down all the time. You would think that the break from the pain would make me feel great, but a feeling really rough.

It feels like the body is still having the attacks and waking me up suddenly but not having the pain attack that goes along with the usual wake up call. I still have swelling on the top of my head, around the scar but no pain what so ever.

I have to think my self lucky, to be honest as i cant remember the last time i had 3 or 4 days in a row with no pain in the head. So i should grab every moment as it comes with both hands and i always end up trying to do too much. I am actually praying that is is the medication that i am taking as if it is, and it is starting to work i will end up having these pain free days more regular and that's something i am praying to god to happen.

I have to take the opportunity to do other things and take my mind of the attacks and constantly waiting for when one will come calling again. I will do some more work on my web sites as that seems to keep me calm and busy. I always seem to loose all perspective of time when messing about on the computer and working on my websites. So yet again its another short post and fingers crossed it lasts…..

Early morning start, but still pain free…. thank god!

Again i am woken up at 3am, not by an attack mind you, but just waking up at 3am and not being able to get back to sleep. I don't feel at all tired and any trying to get back to the land of nod results in me just tossing and turning in bed for ages until i decide just to get up.

Its funny how the body gets used to the little things like waking up early every morning.I just realised something whilst turning on the heating to warm the flat up, could it be the cold that is actually waking me up? It wouldn’t surprise me if that's was the cause of my early morning calls all the time. I know my condition is irritated by the cold and i always end up having really bad days after getting a chill to the head. I also know that when i am having pain free days it can still be set off by a cold chill blowing against the side of my face. I do try and take every precautions when it comes to keeping my head warm lately especially now that winter is drawing in.

Lets just hope this pain free period continues for a couple more days. I am going down town later this morning to pick up my new fishing equipment. It crazy how i have become addicted to the sport, twice in one lifetime, and this time round its even worst. I find myself wanting to go fishing almost every day and given the chance i would. Maybe i find it easier to deal with the attacks when i am more relaxed, as if i get an attack whilst out fishing i just crawl into my dome (an umbrella with sides, like a small tent) take my injection and wait for it to work, it helps being hidden from sight as you don’t feel like everyone is watching what is happening. It doesn't bother me as much having an attack when i am out fishing like it does when i am out in town. There is nothing worst than having a massive attack when you are in the middle of town. I start to panic and all i want to do is be home, where i am safe and out of site of people.

I had my bi-annual review with the CAU Team yesterday, to see how i was doing with my addictions, taking so many tablets doesn’t help my situation one bit. I have a new shared care nurse now, who i met for the first time yesterday, Louise. She is very pleasant and seems understanding and very patient. I had to explain my situation right from the beginning again and it wasn’t until i told my story that it all hit home and i burst into tears. I don't know where they came from but being bi-polar it just happens like that. I cant count the number of times i have just burst into tears for no reason, even when i am feeling fine.

Well things are looking up at the moment and am starting to waffle on. Its not until you read back through all these blogs that you realise the roller coaster of feelings that you are getting. I suppose its only to be expected with this kind of illness. I am so glad i actually started writing this blog just over a month ago as i feel getting my feelings off my chest and down on paper has helped me a lot in dealing and coming to terms with what ever is happening to me.

Pain Free… but will it last?

Well so much for a nice lay in! Again i have woken up 4am, not because of an attack mind you, just because i have been so used to getting up early hours with an attack that my body clock is all messed up. I didn't feel tired or even have any sign of a shadow building. I shouldn’t moan when i get pain free days as any day that is pain free is a good day as far as i am concerned. It’s just when you end up so tired from being woken up each morning you try and let your self lay in when you can get the chance and to be woken up for no apparent reason and have no pain or not even feel slightly tired is annoying. I tried to go back to sleep but all i could do was toss and turn in bed so i ended up just getting up and sitting in the living room listening to the radio till 7am.

lets hope the pain free days continue, it is so rare to get them now days i just try and grab every opportunity to live a normal life i can. I have to be at CAU for my Bi Annual check up later this afternoon and that means jumping on a bus and heading into town. I don’t like traveling on busses when my head is bad as people start staring at my face when the left side droops badly and some people can be so rude and nasty to others that are suffering with illnesses that they don’t understand.

Woo Hoo! Todays the day i order my new fishing gear and it should be ready for collection tomorrow. I cant wait to try out the new gear and go fishing again. I am hoping my head will stay pain free long enough to get a days fishing in this weekend coming so fingers and toes are crossed. That's about it for today, again only a short blog update, i don't want to waste this pain free time.

Let’s have a lazy weekend…

Thankfully i didn’t get any more attacks yesterday afternoon and evening. I still had a bit of the shadow right through till the night but the attacks never came. On top of that i also managed to sleep right through and wasn’t woken up early hours like i normally am. I think i must have stirred at around 1 or 2 am but managed to get straight back to sleep.

Today i feel recharged and full of energy once again. My neck is still a little sore mind so i am not going to do anything stupid and cause it to start of another attack by making it worst. My stomach is in bits from all the medication i have been taking. I know the tablets and injections are there to help me and the medication i am on is for making me feel better (eventually) but my stomach has been getting some nasty cramps over the last week. I have been “also” taking medication that is supposed to settle the stomach but it hasn't had any effect on me and every now and again i get this stomach cramp from hell. I don't want to be too graphic but its like i haven’t been to the toilet in a year! and before someone says something, “YES” i have tried!

Well here we go for another lazy Sunday, i have to say it is the best day of the week, i get to laze around the flat all day and no one moans as it is the weekend. There are a few household chores i want to get on with but they can all wait till the afternoon. I think i am going to start the day with a nice hot cuppa chino and watch a bit of TV. I am still feeling a little tired i suppose that is because i actually had a lay in till 8am this morning. Now for me that's is brilliant considering most mornings i have been getting up between 3am and 5am. I don’t have the feeling of pressure (“the shadow”) on the left side of my head today and only a bit of a sore neck so fingers crossed it will be a pain free day. I really do need the break!

Blog Update: October 2012

Its not until you have been sat in extreme pain for an hour you realise how much punishment the human body can take. You wonder at what point the body will just give up as it can’t take any more pain. I know through experience, and having passed out a few times, that there IS a limit to what you can take. I wasn’t out for long, a few seconds i believe, similar to fainting i am assuming. When you come around after those few seconds your head feels like it is about to explode and throbs for a few moments and then you get that horrible metallic taste in your mouth when you swallow. Its at that point you realise you have fainted or passed out. Its also when you notice you are curled on the floor in pain when you were originally standing massaging your head and the moment when you realise you can’t remember how you got to the floor.

I have to be honest, although i have been getting some very nasty attacks just lately, the smaller of the attacks have seemed to have decreased in the amount i get in a day. Where i would get 8 or 10 attacks a day and 4 or 5 would be huge ones and the rest small, just lately i have been getting 1 or 2 big attacks a day and only a couple of smaller ones. As it now stands i can normally abort the attack with an injection and am allowed two a day at a push. If the attacks stay low i will be able to deal with them no problem and maybe start to live a bit of a normal life again.

My medication is about to go up again soon so maybe it is having an effect (my fingers and toes are crossed and i pray it is working) on the number of attacks i am having on a daily basis. The breaks i normally get between episodes used to last around a week or two but just lately they are only lasting a few days. I think this is now due to the weather getting colder and more low pressure. So it must be irritating what ever it is that causes these attacks. If i  can keep the amount of attacks low, i should be able to cope by taking precautions this winter and wrapping up when i need to.

Also being Bi-polar and having up periods and low periods don’t help one bit. Starting up fishing and going on trips with my mother and step farther really helped me and kept me on an up for a while whilst i was trying to come to terms with the fact of my illness and diagnosis of being an “Official Head Banger”, suffering CH. when the lows kick in though, it is very hard to see the positive side of anything and trying to cope with the most silliest of tasks becomes almost impossible and u just break down in bits. i am just grateful at the moment for these web sites and blogs as it is something to keep me occupied so i don't end up on a self pity trip.

Something else that has been bothering me, and it wasn’t until i started this blog i noticed, is that ever since these attacks became daily my memory is going all to pots and my eyesight has become bad. These attacks are definitely having an effect on me as i can see the slight droop on the left hand side of the face has become a little more noticeable, the swelling on my head is now permanent where the scar is. I am forgetting days, not just little things but complete days are a mystery to me. Also memories have become more like dreams than actual memories as i can no longer picture certain things in my head as i used to from time back. Its a strange feeling really but it also could be just age as i am only 1 year away from the big 40 (well they say that's when life begins, i blooming hope so) and still young enough to enjoy life!

Well that's it for now. Fingers crossed that this medication starts working and along with the other treatment that they have planned i get to the bottom of this illness and get it under control. The day is advertised to be clear today so i am hoping the shadow will disappear and i get a couple of pain free days.

Early morning wake up call……

Another early wake up call has me screaming in pain at 3am. Yesterday must have been one of the worst days i have had in a while. I must have had around 8 or 9 large attacks and a good 6 or 7 smaller ones through out the day. The worst was around about lunch time when, i can honestly say, i experienced one of the largest attacks i have had so far. I took my injection when i started to feel it building but again for some reason the injection had no effect. The pain just continued to rise in strength and i believe at one point i was on the edge of passing out. The sweat just streamed off me again and the ringing in my ears became so loud i couldn't hear myself think. As the attack came towards its end, normally it disappears just as fast as it started but this time it left me with one heck of a sore head.

I couldn’t massage my head as normal as every time i touched it i was in fear of it starting up again. I could feel a tingling sensation all over the left hand side of my head. A strange feeling i have only encountered a couple of times with the bigger attacks. Even when i tried to see out of my eye i couldn’t because its just a blur and is still streaming from the big attack.

I have noticed that my attacks have decreased in length just lately. Normally the attacks last anything up to an hour or even an hour and half but just lately they don't seem to last past the 30minuets stage. I thank god they aren’t as long as they used to be but they feel just as bad. It may be the medication i am taking starting to effect my condition and starting to work. I really do hope that this is the case and my fingers are crossed tight in hope.

At the moment i am feeling extremely tired from the early morning wake up call but i can’t go back to sleep as i can feel the shadow strong. This feeling of pressure building on the left hand side of the head is a horrible one. It makes it worst knowing that it is what leads to the attacks so it makes you a little paranoid, as soon as you start to feel it build, you are anticipating the onset of yet another episode.

Winters on our doorstep…

Winter is definitely around the corner! Woke up this morning and it felt like the top of my head had been left in a freezer, like there was a cold ring around the top of my head. For some reason ever since these attacks started i have been able to feel the cold and the drop in temperature with the top of my head. I know it sounds strange because it is and it also feel strange too.

I used to joke with my ex wife and my family about being able to tell the weather with the aches and pains in the body, when arthritic pain starts in my left knee, for example, would tell me that within the next couple of days we would see rain fall and i was normally correct in my predictions. Just lately i have been able to detect the bad weather approaching as my attacks would become worst and the ring around my head would start to appear.

Its weird how the body reacts to the extremes like cold and heat, i know that if i use heat to help to control the pain in my head it normally helps to abort an attack. It doesn’t stop the attacks from happening it just helps me to cope with the pain. I use an electric fire close to the face sometimes in order to help control the amount of pain by making the heat reach the same level as the pain. As soon as you reach that level you then start to move away from the heat slowly and the slow decrease in heat also makes the pain decrease at the same time.

This heat trick doesn't work every time but it does help you deal with the level of pain you experience. Another trick i have learned is the “vigorous massage”, this is also a way of dealing with the painful attacks when they arrive. I start to massage the point of pain on the left side of my head from the back of the head to the front. You have to massage it vigorously otherwise the amount of pain overpowers you and then nothing helps. I am sure it is the friction and heat created by the vigorous massage that actually does the trick and helps me to deal with the pain. When the attacks normally last from 20 minuets to an hour and sometimes even longer, this trick seems to decrease the amount of time the attack does last for and helps to abort it eventually but you have to keep up the massage for some time and it can make your arms really tired from the amount you have to massage it.

With winter now on the doorstep there isn't much else i can do to stop these attacks apart from take my medication, stay in the warmth and wrap up if i go out anywhere. I am just hoping that this winter is not going to be as bad as last year with the snow, but for some reason i think we are in for a bad winter so time to get ready for even more pain.

Eyesight shot, is it time for glasses?

The weather lately just don't seem to want to make its mind up. Although the sun is shinning and the skies are clear it is still absolutely freezing, especially first thing in the morning. I didn’t get any more attacks yesterday, thank god, and i managed to get a good nights sleep last night. I wasn’t woken by the beast as i normally am, instead i just woke up a couple of times normally and went straight back to sleep. I think i only woke up because my body is so used to being woken up by the attacks all the time. Well at least i managed to lay in till 8am this morning which is very good for me. I don't have any shadows this morning and my neck seems to behaving itself.

I must ring the doctors today to make sure i book an appointment and go see her to get my meds increased like the specialist said. I know the doctor is back now as she was only off till Wednesday. The specialist seems to think that if i increase the medication enough it will eventually take care of the attacks and put my condition into remission. How long this will last is anyone's guess, it could be a few weeks, months or even years, or it could just be a couple of weeks and then the attacks come back. Any time with out an attack is a bonus as far as i am concerned and if increasing the medication by 300% is what is required then that's what i have to do.

I have noticed something since i started the medication that i have to point out to the doctor as it is starting to worry me. My eyesight has suddenly gone really bad. I used to have brilliant eyesight when i was younger and was tested with 20/20 vision (sniper vision). lately i have been on the computer or been reading something and suddenly my eyesight goes all blurry and i cant read a damb thing unless i move it further away from me. I know your eyesight can get worst as you get older and i am not getting any younger for sure, but this is only now and again it isn’t all the time.

If my eyesight was bad every day and i couldn't read small print or papers then i would agree with most people and say that it is due to old age but this isn't the case at the moment. Its seems to be after i have had a run of attacks my eyesight becomes bad and i have to take a break from the computer or reading smaller articles. When i get my good days my eyesight returns back to normal and i can see a Gnat at a thousand paces so i know something is going on. It is either the attacks that is causing my eyesight to go weird or even the medication i am on.

it is all just speculation at the moment and i am just guessing at the cause of the problem, in reality i think it IS the attacks causing it as if it was the medication, again it would be every day as i take my medication every day with out fail. So fingers crossed the doctor can suggest something other wise its time for me to get some glasses.

Winter Blues makes it worst…

Again i woke up at 2 am with yet another early morning attack and again at 4.30am. I am not sure why i am getting them so early in the morning i assume it is due to the cold or the temperature dropping during the night or even due to me rolling over in my sleep on to my left side. In reality i think it is because of the temperature drop, i cant see how sleeping on my left hand side could keep causing me to have attacks. I know it does sometimes irritate my head and its as if pressure is building on the left, if i sleep on that side.

What does amaze me though is the fact that as soon as i wake up i am not sleepy or tired. Its as if i have been awake all the time. And when you realise that you are awake and not tired is normally when the pain kicks in and starts to hit you. The only thing you can do is breathe in your oxygen or if the attack is just too much to bare, then take your injection to abort the attack.

Well its time to see the doctor again and get another increase in my medication. The doctor has been a way on holiday for the last couple of weeks so i haven’t been able to make an appointment. Mind you i don't think i would have made it to my appointment, if i had made one, i have been so bad lately.

What i cant understand is that normally during a year i get a break from the attacks around the summer time when the weather warms up and is a lot clearer.  For some reason this year i haven’t had a break from them, they have just continued through the year on a regular basis. What happened to the breaks? I am actually dreading this winter as i know that i am going to be really bad and the cold weather is sure to play havoc with my head. The only thing i can do i wrap up warm, make sure i have a woolly hat to cover my head on the coldest days and hope for the best.

The beast came a calling….

So much for a pain free day yesterday! I decided to go up my mothers yesterday just for a visit but while i was there the beast decided to come calling. I didn’t have any signs of an attack coming or any pains in the back or the neck that would hint that there was one building yesterday. Now considering my mother only lives 10 minuets away by walking, it’s not really far and doesn't take long to get back in case of emergencies but yesterday it felt like it was miles away.

I was in mid-conversation with my mum when suddenly i broke out into a massive sweat, like someone had switched on a tap, it was pouring off me. Immediately i knew what was happening even though i didn’t get any warning signs that it was about to start. I made my excuse and exited rather sharpish and ran as fast as i could home before the attack became too much to bare. Unfortunately i am not that fast and the attack hit me half way home.

Firstly the pain came shooting out from behind my eye over the top of the head into the back of my neck, the left eye began to stream and i couldn’t see out of it, this made the journey home even more difficult. I know i must have been about one minuet away from my flat but it seemed like it took me hours to reach home i was in so much pain. As i ran towards my flat all i could do was massage my head vigorously hoping that it would ease the pain just long enough for me to get indoors. It didn’t help that the temperature has dropped a lot over the last few days and the cold always makes the attacks worst than what they are.

As soon as i got in the flat all i could do was sit by the oxygen tank breathing in as much as i could, then i decided to take my injection to abort the attack. I grabbed the injector and pushed the needle into my leg as i normally do and injected myself. It took about 2 minuets for the injection to take effect but when it did it didn’t stop the attack like i was expecting it too. This has only happened a couple of times as normally the injection works wonders, but for some reason it wasn’t working this time. The pain just kept building in strength and there was nothing i could do about it.

It was just over an hour before the attack decided to stop on its own and i was absolutely exhausted by the time it did ease off. The amount of pain i was in was unbelievable, when ever i try to explain to someone how painful these attacks are, i am sure they don’t believe me, that someone can be in so much pain for so long. Today is another grey and bleak day with low pressure and rain through the day so i am sure i will have a few attacks today. I have the shadow, the feeling of pressure on the left side of the head so i know it will definitely play up again before the day is over.

Cold enough to chill your bones….

Yawn! Talk about over sleep, I must have slept for Wales last night. Yesterday was a good day for me as the pain decided to stay away and i didn't have any attacks or sore neck. I had a strange feeling in my legs when i walked over to my mothers for dinner but apart from that there were no incidents.

This morning i woke up, late for a change, and i could feel the cold on the top of my head. The temperature has dropped a lot compared to the last few days. It weird how i feel it on the top of the head before i feel it anywhere else. The extreme cold is one of my main triggers for an attack so i am careful not to allow it to irritate my head to much, even to the point of wearing a hat in bed when it gets too cold. The worst is when the cold weather gets to the side of the face either the extreme cold or the cold air constantly blowing into the left eye will set off an attack straight away.

I have the shadow this morning so i know i am going to have an attack soon. I am surprised i haven't had one yet as normally it is my main wake up call but at least today i managed to have a good lay in and rest. I needed to catch up on my sleep as i found, whilst having dinner at my mothers yesterday, i was falling asleep at the table. When i returned home, with a full tummy, i found that all i wanted to do was crawl into bed to sleep, so that's exactly what i did! Now that's what you call being lazy LOL

Well the weather isn’t as nice today as it was yesterday and it seems VERY cold outside today so i am going to have to wrap up warm otherwise i am sure to be in agony by the time i get back from picking my medication up from the chemist.

Pain Free for 5 minuets…

I managed to get a great nights sleep last night and wasn’t woken once by any sign of pain or attacks. I have woken today, fully rested and pain free! It has been a while since i felt this pain free as i haven’t even got pain in my back as i normally have. There is no sign of a shadow so far and the weather today looks bright and clear so hopefully this pain free day will last.

There is so much i would love to do no i don’t have any pains but its a Sunday today and supposed to be a day of rest. I am going up my mothers for dinner so at least i will be getting out of the flat and won’t shut myself away as i normally do.

It is hard sometimes as all i can think about is the pain that i go through and what happens every time i have an attack. I don't want people seeing me like this! I suppose its just human nature to feel this way as we don't want to seem vulnerable in other peoples eyes. Any sign of weakness is normally taken advantage of by those who are scared of it the most, so i suppose this is the reasons why we try and hide away when we are feeling most vulnerable and weak.

Well i have to get on with fixing my computer as last night, whilst it was doing a Microsoft update, it decided to crash and wipe months of work from the memory. Lets just say i am not happy with it at the moment and am tempted to use a sledge hammer to fix it. So let me crack on and i may update the blog later just to see if the PF day continues..

Re-Charged my batteries, but still a little sore..

After the last couple of mornings being woken by the beast at ungodly hours i was absolutely exhausted  yesterday. The trouble with having CH is you tend to lock yourself away and not want to go anywhere due to fear of having an attack. I managed to get out for a bit yesterday despite my depression playing up, i spent the morning at my mothers having coffee and chatting about future fishing trips we would like to go on. I then managed to rush to Tesco for some shopping as it’s like mother Hubbard's cupboard at home and i needed to get some essentials. Right in the middle of shopping i get a massive attack!

As you can imagine i broke out into sweats like the Niagara Falls, my eye started to stream and close, the left hand side of the face started to droop and swell and the top of my head started to swell up also.

The poor shop assistant who saw me rush into the disabled toilets, in order to get out of sight as i didn’t want people seeing me like this,  thought i was having a stroke. She came rushing in behind me. Asking “do you want an ambulance?”,”are you ok?”,”can you breathe?”. Now why she asked the last one i can only assume she thought it could be a heart attack bless her but i managed to explain what was going on. She was very helpful to be honest but all i wanted to do was be left alone and take my injection to abort the attack. I then managed to ask her to leave me alone for 10 minuets so i could deal with the attack and she kindly left me to take my injection in peace.

Its crazy how fast an attack can come on, and sometime it doesn’t even give you clues that its about to start as i didn’t even get the shadows yesterday before the attack as i normally do. At least today i feel a bit better as i was so tired i managed to sleep right through last night so i feel my batteries are charged up a little.

The weather is forecast to be clear so lets hope i don't have any attacks today. I do have a little feeling of soreness on the left side of my face but that's the after effects from the attack yesterday as i am still having pain in the back from it. Fingers crossed!

Another early call from the beast….

Another wake up call at 2am followed by an even bigger one at 4am is how i started the day today. I hate these wake up calls. Its weird really as when you wake up you are wide awake! not even a little tired. At first i was a little confused as to why i was awake so early and how come i was so wide awake, and then it hit me, full on, on the left side of the face. The pain shot from my eye to the back of my head like someone was pushing a hot poker through it. I ran into the room screaming in pain, grabbed my injection and jumped on the oxygen and waited for the injection to work and abort the attack.

The trouble with having your injection so early in the morning is that it leaves only one more to deal with any further attacks later in the day and i usually get some big ones if i get the early morning wake up calls. Now the attack is over i feel like i have a golf ball stuck in the back of my neck and an extremely sore eye and tender face. My left hand side of the face is slightly drooped as i look in the mirror i can see the effect the attack has had on me. I can see there is swelling on the scar on the top of my head and also on the side of my face around the cheek area and of course not forgetting the shadow!, the feeling of constant pressure on the side of the head.

You would think after suffering with these attacks for so long you would get used to them and with each day that passes they would get easier to handle but they don’t. They seemed to get worst. Each time and as the winter draws in they are getting more and more frequent. I remember the hell i went through last winter so i am praying the medication works before i start to get really bad with the attacks. So fingers crossed and lets hope something starts working soon.

The Pain is Back….

At the beginning of the day yesterday i had the feeling of pressure on the side of my head but i didn’t actually get an attack. I was  lucky as i went fishing with my mother and step-farther and didn’t even have a twinge until on the way home in the car.

Its strange as i would have thought if i was going to get an attack at anytime yesterday it would have been while i was out in the horrible cold weather but nothing happened. The day was grey wet and horrible, much like today except with out the showers. The weather has definitely started to get colder as i can feel it on my head, its like a cold ring around the top of my head. I have felt this feeling ever since my accident in Cyprus when i had my head split open like a watermelon by a metal scaffold pole. I also have ringing in my ears since the incident, but i am sure it is from when i worked in a nightclub as a DJ, they always had the volume way to high and i think that is what has caused the ringing or damage to my hearing.

Well i didn't get any attacks until late last night and then it was an attack from hell! I thought my head was going to explode, again the sweat poured off me like a running tap, and the eye closed from the streaming water coming out of it. Eventually my vision went and the pain became too much for me to handle so i ended up taking an injection to abort the attack. It took longer for the injection to take hold this time as i was timing the attack and clock watching. I am wondering whether i am getting used to these injections too much? I don't want to be taking them too often in case the body decides to get used to it and then they wont work as well as they do at the moment. They say i am allowed two per day maximum but even one a day is a bit much. Every couple of days sounds about right  but tell that to the attacks and my head.

The good thing is i managed to get a good nights sleep as i was so knackered after the fishing trip we had, catching all those fish tired me out. I have woken today feeling regenerated but still have the pressure feeling on the left side of the head (the shadow), and guess that today will be another painful one as i can feel the attacks building whilst sat at the computer writing this blog. So i think its a “Take it Easy” day today and just see what the day brings…..

A Welcome Break….

Well i was pleasantly surprised yesterday as i thought i was going to have some big attacks all day, in reality all i got was a couple of smaller attacks that by the evening had disappeared completely.

After the last few days i was grateful to get a pain free period for a while. I have woken again today around 6am due to me waking early every morning with pain my body is now used to getting up at that time in the morning so bang goes a nice lay in when you want one as i am wide awake. I don't mind today as we are going fishing again today. I have to admit my mother and step farther have been absolute angels as they seem to know when i am starting to go into a low period and seem to be around or do things just at the right times to snap me out of it.

We have had a couple of brilliant fishing trips so far that has seen me become addicted to the sport yet again. I was addicted when i was younger and used to go fishing a lot, but this time round seems worst, i wish i could be going every day but i cant because of the attacks.

I don't like to admit it but i am actually scared of going out when my head is getting shadows or attacks as i don't like people seeing me when i am in a full blown attack, Also i hate people fussing around you when you are in mid attack, there is nothing worst than someone asking “are u ok” when clearly you are in agony. Also i hate to go out in bad weather as this always seems to set off an attack, if not straight away, i am guaranteed to get an attack sometime during the day in the bad weather. I am sure it is the cold that gets to my face in turn setting off the big attacks.

Winter is drawing in fast so it will be time for woolly hats and scarfs to wrap up in to keep the cold from getting to my head and face. Also i can only see us going fishing a couple more times before it is too cold to go out on the lake side. Well the shadows are here so its time to sit on my oxygen and see if i can get them to disappear ready for fishing later.

let the trials begin…

Well at least i managed to sleep till 6am this morning. Considering i am normally woken up by 1am or 3 am with attacks, to actually sleep through till 6 is amazing. I have woken up with a horrible taste in my mouth. Like a metallic taste, as if i have sucking on a battery all night.

I have had this taste once before, when i had a massive attack and couldn’t get it to abort no matter what i tried, even to the point i had to take an injection and it STILL didn't want to stop. To have the taste in the mouth and not have any attack is strange, very strange.

I haven't as of yet, had my first attack of the day yet so lets hope it doesn't start up like it was yesterday. It wouldn't rest, yesterday was a very painful day. I had over  8 attacks yesterday but most of them were smaller attacks than normal but still as painful. The attacks in general normally last between 10 minuets and 1 hour, but the attacks yesterday were only like 5 to 10 minuets long and then they just stopped on their own.

I have the feeling of pressure on the left hand side of my face yet again, this is what i assume CH sufferers refer to as the “Shadow”. Also when you get the feeling of pressure you are guaranteed that sometime today i will have a massive attack. The really big attacks only ever come when i have this feeling. I also get swelling on the top of my head where my scar is, from when the head was split open like a melon all those years ago. This swelling could be the cause of my attacks to become daily instead of monthly.

When speaking to the specialist i asked about the swelling and if it was contributing to my attacks and the specialist has agreed to scan the brain and make sure that is not the case, to put my mind at rest (excuse the pun). It is anyone's guess as to why i am now suffering on a daily basis with these attacks and the specialist seems to think this is normal for my condition, to suddenly become chronic instead of having attacks for shorter periods over the year. So far he has been right about everything. He was spot on when diagnosing the condition. He seemed to know me and know how the attacks were effecting me as he has dealt with it all before.

lets hope he continues to be correct and gets these attacks under control with the medication the are now putting me on. They have increased my medication by 300% and will continue until they reach the maximum i am allowed in 24 hours. If this doesn't work then they will have to withdraw me from the one type of drug and then change me to another. let the trials begin….

Depression kicked in …..

Another wake up call at 4am with extreme pain was the start of the day again today. Mind you i am not surprised after last night, it was the first night i actually said to myself “Winters here! ,Early!”, the nights are getting cold and dropping in temperature so much that i can detect it with the top of my head.

I know it sounds strange but i get a chill on the top of my head if the weather is cold, this chill is like a trigger for my attacks and i have been able to detect the drops in temperature at night ever since my CH started a few years back. I was also surprised with myself yesterday as my depression started to play up again! I know i suffer with bi-polar disorder, but this was never a problem until i returned to the UK from Cyprus.

The depression side of the mood swings are usually controlled by my medication and is only an issue if i stop taking my medicine. The last time i stopped i ended up back in hospital so i don't want to do that, and have been very good making sure it doesn't happen again. I do get the “up” periods as the doctors call them  but they are only momentary and don't last like the depressive side of my nature which seems to last for months at a time.

I was so bad the Yesterday i was walking around in my own little bubble, oblivious to the fact i had a depression period starting. I started to clean the flat and wash the dishes as one does, and left the hot water to run to fill the sink. My mind was so much in the clouds that, whilst it was filling, i got distracted by a message on the computer. I could hear the water running and it registered in my mind but just didn't seem to click that it was the tap still running. It was a few minuets before i realised, but by then it was too late, the damage was already done. The kitchen was flooded in 3 inches deep water, that was also running under the door into the living room soaking in to the carpet. “Oh My God! What have i done”, i screamed.  I then immediately sat on the floor placed my head into my hands and burst into tears (after turning of the tap of course). I was in a rite state.

I must have been upset all night, as even after i managed to clear the water, by using loads of towels and dirty clothes to soak up the water and then place them in washing machine to drain, i still collapsed in a gibbering heap on the sofa and began again to cry. It wasn’t until i had another head attack that i snapped out of it and began concentrating on the attacks once again. I don't know why this depression kicked in this time, i can only suggest that its due to all the early mornings and no sleep that is tiring me all the time.

I have had a few episodes of depression kick in lately and i am not sure why they are doing it. I think this is one of the reasons why i have become so addicted to going Fishing this time round, i was bad enough when i was younger but for some reason, this time, i want to be Fishing every day!

I am just hoping the depression doesn't last long, as usually its a couple of months, and with winter now upon us, its going to be bad enough with the cold and head attacks to have to deal with depression as well! It will probably finish me off.

Slept like a baby…

What a lovely day fishing i had yesterday with my mother and step father. I started the day extremely tired and with a sore head from a massive attack early hours. I thought my head was going to play up all day, at first i thought about cancelling and not going at all, but then i had to think about how excited i was to be getting out of the flat and doing something i love and how they were looking forward to us ALL going to the lake together, so just had to bite my cheek and hope for the best. It was a nice surprise to see it so lovely, sunny and cloud free outside, it made the days fishing even better.

I did have a couple of times where i could feel the shadow building on the side of my head and a few small aches in the back of neck. My back was also playing up, and sitting still on a fishing box, was making it stiff. Apart from the few little niggles i didn't really have any real pain to complain about and with the calming and relaxing effect fishing has on me i had a brilliant, what i would class, pain free day!

By the end of the day i was completely knackered out, the fishing had been good and kept me active, the day had been nice and warm with the sun shining constant on the side of my face giving me a warm calming feeling. When i got home i was ready for the knackers yard (so to speak), all i did was quickly update my fishing blog, make a hot cuppa and then it was straight to bed and that was the last i remembered. I must have fallen straight to sleep. I didn't wake during the night or early hours with attacks, thank god! I managed to get a really good nights sleep and now feel recharged and ready to take on whatever my head has to throw at me.

I’ve had a few small attacks this morning not lasting any longer than 5 or 10 minuets and my neck is a little sore. Its no where near as bad as it normally is so i will just take a couple of pain killers and take it easy for the day. Its a Sunday (day of rest) so that's my excuse for being lazy today. lol

Fed up with “Early Morning” wake up!

AARRRRGGGGG! i am so fed up with these early morning attacks! Again up at 3am this morning with a painful attack on the left side of my face. Burst into sweats again, like pouring water running of me. Pain from the back of my neck, over the top of the head through the back of my eye and down into the top of my jaw on the left.

You could mistake it for nerve pain from a tooth its that sharp a pain, but i have had all my teeth, apart from 3 on the bottom, removed in an operation at the Hospital. They originally thought the same about the pain i was getting and rushed me in and pulled them all out only to find out it had nothing to do with the teeth.

They then though i must have an infection, in the bone. Now i don't know how you get an infection “inside” the bone, but apparently you can! They took a small sample, that they cut away from my upper jaw, to test only to find out there was nothing wrong. The operation i had regarding my teeth was the worst i have ever experienced and has put me off operations for life.

I remember waking up in so much pain, and all i could do was spit clumps of blood from my mouth, i couldn’t talk and was in absolute agony, pain very close to the level i get with the attacks. I remember pleading with the nurses for help as i couldn’t even swill my mouth out properly, at the time, there was so much bleeding from the damage done by the operation. I never want to experience anything like that ever again!

There are so many incidents that have happened to me over the past 10-12 years that are only starting to make sense. As each day passes i deal with the beast, and try to control the pain it brings, more and more becomes clear. Every thing has started making so much sense.

Anyway its back on the oxygen for now as i have fishing later today and i have been really looking forward to it. So time to drug myself up and relax. Try and make the beast sleep for a while so i can enjoy my day.

Woken by the call of the beast!

Woken yet again by the call of the beast! eyes’ wide open and awake, didn't even feel tired. I just suddenly woke up, at first there was no pain, i couldn’t understand why i was so wide awake all of a sudden, and the after a few moments it clicked, as i got up to walk into my living room the get my oxygen, a sudden sharp shooting pain behind the eye and then it begins.

Sharp pain across the top of the head into the back of the neck, also sharp pain behind the eye that i can only describe as someone pushing a hot poker through it slowly. I took my injection as this was building up to be a bad one, the pain increased and at first i thought the injection wasn’t going to work again. There have been a couple of times i have taken my injection and it hasn't stopped the really big attacks but most of the time it does. Was this another time it actually let me down?

I placed my face close to the electric fire again to get heat on the side of my face as this can help to control the pain, as i bent down, i felt suddenly sick and then the injection kicked in, hard! It was so much that it actually took my breath away and had trouble breathing, i felt my chest tighten so much that i actually thought i was about to have a heart attack or a panic attack or something. I have never felt like this before from the injection, this feeling was new.

I have to admit it did scare me a little but at least the pain is now under control again and i can now sit pain free for a little while. My back is now getting little shocks up the spine, and my neck is so sore but this is normal from the attack. The after affects usually end up leaving me with pains in the back and the legs normally, and a feeling like i have a golf ball stuck in the back of my neck and lead weights on my feet as i walk. I cant go back to sleep now though as i have a constant feeling of pressure on the side of the head and i know i am moments, or hours away from another attack.

A massive realisation…

Whilst having to deal with the onset of yet another attack, a massive realisation hit me today! I started to think back to the meeting at the hospital, and the questions that were asked and how we looked at the history of my condition. Suddenly! Key moments in my life have suddenly made so much sense when at the time i didn't really understand them.

When abroad, in Cyprus, i had a massive nerve attack and thought it was a tooth on the upper jaw on the left hand side and thinking it was rotten, rushed into the dentist, yet the dentist couldn't find anything wrong, but i was in extreme pain so they numbed me up and pulled the tooth anyway. Which i should add “hurt like hell”, and took me two days to recover.

Then again, several months later, a massive attack! Rushed into what they call a “Polyclinic” in Cyprus, it is like a private hospital for tourists, and they thought it was my sinuses, drugged me up to the eyeballs and sent me on my way after departing with several hundred pounds of my money.

Another when i was again rushed into the “Hospital” in Cyprus, told i had a damaged nerve and again was drugged up to the eyeballs and sent on my way. ( I can see a pattern starting to appear),

When i returned to the U.K. was told for years i was suffering migraines and it was all in my head the level of pain. Even to the extreme i was admitted the a mental hospital for my own safety. Then when a doctor seen one of the attack’s they realised it wasn’t just in my head.

Then to finally get a diagnosis, after 10 years of struggle and made to feel so low you couldn’t understand, and also to get a name for the condition was an amazing weight lifted from my shoulders, “CH”, “Chronic Head Aches”, why they call them that i don't know, as the only way i can describe the pain, is imagine all your tooth aches and head aches and bone breaks and pains all happen at the same time, but not just lasting for a moment, no it has to last at least 20 minuets, constant sharp pain increasing every second. Then maybe you’ll understand of just 10% of what it feels like.

It was a  great relief to also stumble across the web sites for the support groups that try to help other people like me , that suffer CH, and help them understand it and how to try and control it. There aren't many people that actually know this condition exists i am now finding out, even my own doctor has had to learn and be prompted by the specialist on how to treat me, and fair play to her she is trying her best. My specialist is also sending her e-mails with all the info needed about the condition so they are all trying for me. I read the story's of other people who suffer chronic like me (on a day to day basis, not just once in a while) and hear the story's of their struggles to get their medication right to enable the attacks to go into remission (go to sleep so to speak) and then only to come back later down the line, even after years.

Then a wave suddenly hit me today, knowing this information and realising that i may have this condition for the rest of my life, struggling day to day to control the pain and attacks, juggling injections and oxygen and different drugs just to be able to sleep a full night pain free. Tears started to roll down my eyes of the realisation of how bad this condition is. Then i kicked my self! Think! There are other people out there worst off than me, struggling day to day with pain from cancer and other conditions, that most, wont actually live through, and there was me having a “feel sorry for” moment.

I have to admit to myself though, i don't know if i have got the strength in me anymore to deal with this condition on an every day basis but all i can do is try and hope, to god, that something will put this beast to sleep once and for all. Each day i have to try and grow stronger and try and beat this thing, surely to god there has to be something that will sort it out and i will find it. The specialist was nice with his manner, but seemed confident enough that they will eventually find the right thing to control it , its just going to take a bit of trail an error, but when you get this much pain, lets just say you can get a little impatient! (Injection time, its starting to get too much.)

The Beast is back….

I continued to have a pain free day yesterday and only had a sore neck when ever i touched it or moved my head too quickly but apart from that i didn't get any other type of pain at all. I spent the day playing on the computer taking things easy as i didn't want to set off an attack just in case there was one coming. Well i was worrying for no reason as one didn't come so i decided to get an early night to catch up on my sleep and make sure i got plenty of rest.

It must have been about half four in the morning when it happened, I stirred in bed then suddenly my eyes were open i was wide awake, i couldn’t feel pain straight away so i just lay there wondering why was i wide awake when i wasn’t getting an attack and then it happened. the beast decided to come back.

A sudden sharp pain in the neck followed by the shooting pains across the top of the head and behind the eye, quickly followed by that horrible feeling of pressure and then the eye started to water and close. I jumped out of bed in agony, raced into the living room to get my injection and sit and breath in the oxygen. The pain continued to grow in strength and once again it was pointless taking the injection as it just wasn't strong enough to stop this attacks, this was one of the biggest attacks i have had for a while. All i could do was rock in the chair whilst breathing in oxygen frantically as i was in so much pain. My eye was swollen and the side of my face so sore i couldn’t touch it with my hand. I tried to massage my head and my neck but because it was still bruised and sore from the injection the specialist had given i couldn’t even do that.I was in turmoil.

I looked up at the clock on my wall it said it was a quarter to five in the morning and thought my god why me why was i awake this early suffering. The next thing i know when i looked up again it was half seven in the morning and over two hours had passed in pure pain and agony. It was like it didn't want to stop. I had just broken out into sweat, pouring from me, making me feel icy cold. I could also feel the cold weather on the top of my head so i turned on the electric fire and sat close to it so my face was level  with the fire and started to heat up the side of my face. 

I have used heat treatment before to counter act the pain so i was hoping the same would happen, and surely enough as like it was clockwork i slowly moved away from the fire so the heat slowly decreased and low and behold the pain also reduced with the heat. My god this was a painful attack. Well it look like i only managed 2 days of being pain free from the injection, i cant say i am surprised as the specialist at the hospital did warn me not to expect too much. So it looks like the beats is back to stay for a while so it time to wrap up and take my meds.

Even though i have had plenty of sleep i feel absolutely exhausted, it is surprising but these attacks don't half take away your energy and strength. They seem to take everything you have in you just to endure the pain and agony so i am now waiting for the feeling of pressure to ease a little and then will try and have a nap later in the morning.

Pain free but will it last?

After a great days fishing yesterday i was completely shattered so decided to have an early night. I was a bit nervous about going to sleep as i keep expecting my head to start playing up or to start feeling pressure on the left hand side but nothing. So far so good!

I have woken this morning again with no pain so hopefully i will have a pain free day. However, i am getting pain in my back right at the bottom of my spine! It could just be from sitting for a long period fishing yesterday but it feels exactly the same as it does after i have had a big attack. I also moved my head quickly to the left to see something on TV whilst sat at the computer this morning and it cracked about 3 times and then i felt a small twinge where i normally get the tell tale sign of an attack starting.

I tried massaging my neck gently as not to irritate anything and start any pain and i can feel where the specialist injected me it is very sore and tender. I know for sure the injection worked as by now i would be in extreme pain and agony but its not the case. As to how long this injection will last i am not sure, as the neck seems to be getting sorer by the hour but still hasn’t started an attack so all i can do is take it easy for the next few days and see what happens.

The specialist told me they are arranging a brain scan for me (actually means i have a brain lol) and increasing my medication again to see if anything works. If it doesn’t then they will take me off the one type of medication and start me on another, “so its going to be trial and error for a while”, he said, “but it will be worth it in the end”, i will be able to live a normal pain free existence once i have it all under control.

Has the Injection worked?

Well i have to admit when the specialist gave me the injection into the nerve at the hospital i was a bit sceptical as to whether it would work or not. I decided to spend the day fishing with my step-farther and have to say we had a great day fishing the local lake. I managed to catch quite a few fish which made my day.

I have yet to have an attack or get the shadow over the head since i have had the injection. The specialist said it may relieve the pain for a couple of weeks or a couple of days and then again it may do nothing but so far i think it has done something as i don't have any pain in my neck like i normally do and i haven't had any sign of attack, even with the bad weather which normally sets it off, there has been nothing.

It is still early days so i am not getting my hopes up but i have to admit, even one day pain free at the moment is better than nothing. Lets hope it continues through the night and tomorrow.

Woken up Pain Free…

Last night i slept like a baby. The injection the specialist gave me must have done something as i don't have the shadow today and no sign of pain, YET!. The weather is grey and horrible and normally i am in agony when it is like this but today i haven't even had a twinge yet.

I feel like a new man, until the pain comes back that is. So it fingers crossed time and hope that this injection has done the trick and put them into remission for a while. He did say it mat last a few days or even a couple of week or it may do nothing at all, but i am sure it has worked. I know my body and i can tell the difference straight away.

Well is a grey, wet and windy day with a couple of showers forecast so i am going to brave the weather and go fishing. No i am not crazy, some times the best time to fish is when it is grey and overcast, that's when you are in with a chance of catching the big ones. LOL

So for now its fingers crossed and hope for the best and lets see if this beast had been beaten once and for all or if he’s just sleeping?

Visit to the Neurologist

Well that was a nice meeting i had at the hospital with the doctor. Put me at ease straight away and then we discussed what was happening. I explained how i was coping each day with the attacks and taking the injections, but it is very hard to explain to someone how much pain you are in unless you are in pain at the time.

It is very difficult to know exactly when to take your injection as you could waste it on a small attack and end up suffering a massive one later in the day. But i have to admit the injection works every time. It is a shame you are only allowed two per day but there must be a reason so i have to stick to it. The doctor has advised me that they will increase my medication of the Pregabiline up to the maximum dose allowed and then see after a few months if it is helping with the episodes. We talked about the use of oxygen and how it was helping to reduce the amount of time the attacks last and i also explained how the mask keeps letting out too much so you have to seal it off to ensure you get a proper flow of oxygen into your system when having the attack.

He explained clearly how it will be trial and error to get the medication rite as every one suffers in different ways and they react to medication differently. One type of medication may work for one person but not for the other so we are in unknown territory at the moment as the trials continue and we have to see what types actually help me.

The doctor then gave me an injection into the nerve at the back of the neck to “hopefully” stop the attacks or reduce them. He did explain it may not do anything but its worth a try. I would say anything is worth trying when you are in this much pain. I have to say his aim was spot on, he hit the nerve with the first shot and i felt a small electric shock feeling travel along the nerve to the front of the eye and then it stopped. Then all of a sudden i felt pressure build up on the left hand side of my head and an attack started. It wasn’t a full attack as it only lasted a few minuets and the pain wasn't any where close to what i have been experiencing, but i know for sure he hit the rite nerve as it is exactly the feeling i get when i do have a full attack. Lets hope it does something to help as a break from these episodes would go down a treat rite now as i feel so tired all the time.

Getting ready for the Hospital…

The head continued to play up yesterday with my last attack lasting over an hour and half. I have to say i am so happy that i am at the hospital today! At last i will get a chance to ask some important  questions about this condition and how to manage to pain. Yet again i had attacks during the night and early morning hours waking me up. At least this time i managed to force myself back to sleep other wise i would be absolutely shattered for my appointment and i didn't want that.

I have learnt so much, in the last few months, abut managing this CH and the pain attacks but i still haven't managed to solve the problem with my neck and the swelling that comes with it. My neck seems to be getting worse and worse as time goes on. Its like having a grinder inside my neck that is constantly grinding the neck joints away making it feel saw and painful all the time. I know in my heart its nothing like that and its probably caused by a swollen or damaged nerve. But until i get a full diagnosis on it i wont know for sure.

Another thing that has been bothering me is the pain when i walk. I am not talking just normal aches and pains, like you get when you have arthritis in the joint (all though that can be just as bad), but shooting pains up the front of the legs(you would think it would be the back) into the bottom of the back and then up the spine to the base of the neck. Just lately after having my attacks i have been getting these pains more regular and now even when i get PF days i can still sometimes get the aches and pains in the legs and back, strange eh!

Well i had a good rest yesterday even with the attacks i was having so i am recharged for my hospital trip. Fingers crossed and lets hope for some good news.