My emotions are all over the place…

I managed to stay relatively pain free yesterday apart from a few small attacks later in the afternoon. They were due to the fact that i went out in the cold wind and probably wouldn’t have happened if i had stayed indoors. Even though i was pain free i seemed to suffer a normal headache and every time i stood up my head began to throb. This is the same type of headache when you get a hangover, strange considering i don’t drink alcohol. I walked over my mothers in the afternoon and as soon as i left the flat and the wind began to blow straight in my face and in my left eye it started an attack. i quickly retreated back into the flat and waited for the attack to ease off before attempting to walk over again.

It’s strange how little things like the wind and cold sets of these attacks and also when i strain myself or do something that takes a lot of strain on my shoulder or neck. These all set off attack and can’t be avoided as i have tried my hardest. It doesn’t matter how much i wrap up warm or try to shield myself from the elements the cold and wind always seems to get to me and cause me some of the worst of my attacks. I just wish i knew what was going on and how these attacks were being caused, at least that way i could do something about it and avoid what ever it is that causes them.

Being frightened to go out of the flat due to the weather and the fact that  i end up getting attacks is starting to take its toll on me again. A couple of years back i couldn’t bare to be in the flat at all, for the same reason, and ended up spending most of my time around friends houses and out on the street just doing nothing, hanging about waiting for the days to pass. This wasn’t good for me at all and i ended up hanging in the wrong type of crowds and with the wrong type of people who were not really friends just acquaintances and ended up in real trouble that in turn made my health worst than it already was. It got so bad i ended up inside a mental hospital for my own protection for a few weeks until i was well enough to return home.

There are some things i wish never to repeat and that is one of them, being stuck inside a mental hospital watching people at in their chairs drooling whilst rocking back and forth mumbling under their breath. not being able to sleep at night due to the screams and moans from the other patients that you could hear from other parts of the complex. Getting told by the psychiatrist that the pain i was getting was all in my head (excuse the pun) and that no one can be in that much pain all in one go, he said “they would be dead if they did get that much pain”. Oh how i would love to shove my diagnosis right up his ***.

I have to admit in the last 10 years this has been going on, i have been through a hell of a lot. Not knowing what it was and thinking it was just me and no one else suffered such a thing for many years. Self medicating and getting addicted to every type of pain killer you can imagine including morphine and heroin and having to seek help to get off the stuff. Putting my body through hell as it went through different types of withdrawals from the different drugs really making me very ill and i lost so much weight, if people saw me, they thought i had shrunk in the wash. Then to finally come through it all and start to see a light at the end of a long and hard tunnel was so uplifting. Meeting the specialist for the first time and talking to him, it was like he was inside my head, he knew every pain i was getting, every attack and how it developed it was as if he was getting the attacks instead of me. Then finally getting the diagnosis and understanding it wasn’t just me and there are others who suffer just as bad if not worst than me. Now finally to be getting some answers as to what is causing it and if there is anything they can do about it or if i have to pout up with it for the rest of my life is becoming overwhelming.

It only started to make me think about it yesterday and i started to become scared of going to the specialist! Do i really want to know? Will it be the end of me or the start of a new life? Am i going to get worst over the years to come? There are still so many questions un-answered its very scary. I know i MUST go to see the specialist no matter how scared or upset i feel as it is so important to get these answers. I don’t want to let my mother down as she has been my rock the last year or so and i don’t know if i would have got through it with out my mother and step father being there for me. As you can tell by what i am typing my emotions are all over the place and out of control at the moment. There are times where i am crying for no reason at all and then times you will hear me laughing out loud. It doesn’t help being bi-polar as my emotions are hard to control at the best of times, but this is no excuse as i have had my bi-polar under control for many years, with the help of medication, so there is no excuse for it.

I was again woken early this morning but thankfully it wasn’t by an attack and just a strong shadow. the feeling of pressure on the left hand side of my head and the swelling on my scar has become larger than normal. this could mean i will get an attack later in the day but hopefully i will be able to avoid setting it off if i am careful. All i can do for now is sit and wait and count the days left as we wait to see the specialist. Its already the last day of January and it seems to have flown by for some reason. I can’t wait for my holiday in April as i so need a break from it all. To be able to go away and shut all my problems away for a week and do something i love to do, fishing! I can’t wait!

Managed to have a lay in today!

I continued to get attacks yesterday ranging from a mild headache to a full blown attack. After the morning wake up call i managed to keep the attacks from building too painful up until early evening when i was about to eat dinner. I suddenly turned my head to look at something on the TV that had caught my attention and suddenly a shooting pain over the head followed by sharp pain behind the eye. Yet again i was about to have a nasty attack. I jumped out of my chair to grab my injections when suddenly, for some unknown reason, my legs decided they didn’t want to co-operate and i slumped to the floor. I managed to reach across and grab my injection and took it before the attack started to build to such a strength there would be no way of aborting it. Why my legs suddenly went funny i don’t know and still have no idea but at least i managed to get to my medication in time to abort the attack. I then sat on my oxygen for 30 minuets and that also seemed to help ease the aches and pains in the neck, shoulder, head and back. I continued to get a  couple more attacks before bed time but they were manageable.

I was then woken by the beast, not at 3am like it usually does, but at 8am this morning. I managed to get a lay in bed till 8, i was shocked. Apart from the fact i was in agonising pain when i woke up i was actually pleased it wasn’t another early morning start. I have been feeling so tired due to the lack of sleep from the previous week that i decided to have an early night yesterday when the attacks eased off and then to be able to lay in till 8 am this morning meant i have been able to recharge my batteries and i don’t feel as tired as i normally do. My head is sore after the attack this morning and i have a bad pain in the neck at the moment while i am sat at the desk typing the blog. I am still getting pains running down my back and when i walk even though the weather has improved a bit today. The sun is shining this morning but i don’t think that will last for long as we have been forecast rain for the entire week and have flood warnings in place as they think it will be that bad. I watched the weather forecast on TV last night and it showed the satellite images of a huge low pressure area above us. This i believe is the reason for my recent attacks.

I am now at my maximum medication dose for the Pregabilin, 300 mgs in the morning and 300 mgs in the evening, so now its just a waiting game to see if it will help to put the attacks into remission. I am hoping that it will work as i know it has reduced the amount of attacks i get during a period but doesn’t seem to have stopped them from coming. Maybe it has to build up in your system first but surely i would have seen some results other than reduced attacks. It is possible that due to the cold weather and low pressure fronts it is making my head very bad and that is why it isn’t giving the medication a chance to work. I do wonder whether i would be getting a lot more attacks if i wasn’t taking the medication and i would be in real trouble during the winter months like i was last year. This year has been a lot better and i am glad to have the injections and a way of actually aborting the worst of the attacks when they come. Its just a shame i can only have 2 injections in a 24 hour period and have to make sure there is at least an hour in between injections as sometimes i can get attacks straight after each other with about 5 – 10 minuets in between.

I have been trying to stay positive and focus on my fishing and holiday that is due in April but it is very hard. Especially when you find yourself shut indoors all day long frightened to go out in case you get an attack. Scared that the wind and cold will get to you and you end up having a day from hell. Even my mother took me shopping with her yesterday as i was so down and fed up i just needed to get out of the flat and stop staring at the same four walls. As soon as she offered i jumped at the chance and immediately she picked me up with Brian, my stepfather, and off we went to do her weekly shop. Mind you i can’t say i didn’t benefit from it as she ended up doing my shopping for me at the same time, what would i do with out her! My family have been so amazing since my diagnosis and have helped me at out so much i just don’t know how i would ever repay them.It won’t be long before the weather will warm up enough for me to get back out on the banks and start fishing again and i am so looking forwards to it you just couldn’t imagine.All my fishing tackle has been cleaned and organised and then cleaned again i am so eager to get back out and catch myself some nice size specimen fish.

For now all i can do is sit and wait patiently for appointments and for the weather to become good enough for me to go out fishing. I don’t know why but when i am at the waters edge concentrating on fishing i don’t seem to get the attacks building and i very rarely have an attack it is VERY strange. It seems to calm me so much and i enjoy it. I have a tent like structure known as a Bivi that i take with me so if i do get an attack i can just crawl inside to take my injection and then i am able to continue fishing as soon as the attack has gone. Until the weather breaks i will just have to wait. I can’t spring clean my flat any more than i already have, i have spent the last 3 weeks non stop cleaning and organising so my flat is spotless and completely tidy. All that's left to do is to paint the walls and maybe get some new carpet or flooring. Unfortunately i am unable to do the painting as i cant use the roller or brushes. As soon as i begin and start to strain the arms whilst painting it always ends up setting off big attacks as it gets to the neck and then the head. Its driving me crazy not being able to do it as if i could by now i would have the best looking flat in the area. So it looks like i will have to pay someone to come and do it for me. This is going to turn out expensive. It has already cost me a fortune in gas, last year and this year, as i had to keep the temperature of the flat above the 15 degrees mark no matter what the weather as if i don’t the cold or chill gets to the back and neck and sets off an attack.

Come on weather give us a break!

Yet another wake up call from the beast, I wouldn’t mind so much if i could go back to sleep after the attack has happened but its almost impossible. I’ve tried everything to get back to sleep but no joy!You would think that as it drains your energy so much and yo9u feel so weak after getting the big attacks you would be able to drift straight back off to sleep but the shadow or pressure feeling on the side of the head just stops you from dropping off as its always there. If you make the mistake of laying on your left side (the side of the attacks) in bed then you are woken very quickly by yet another attack building. Why they seem to build if i lay on that side i don’t know but it is something i will have to ask the specialist in a couple of weeks time. So far every time i have rolled over in my sleep and ended up sleeping on my left side i have been woken by a massive attack.

Rain, rain and more rain is the forecast for the next week so it looks like its going to be a spell indoors. Now after the last lot of weather we have just had with the snow and freezing conditions i seem to have spent most of my time indoors staring at four walls waiting for the weather to improve and now that it has i am still stuck indoors. I have spent most of my time spring cleaning and sorting out the flat, throwing away anything i think is old or i don’t need or use anymore and tidying each room one by one. I have washed every peace of clothing i have including my summer clothes ready for the brief British summer and thrown away anything that no longer fits me or looks a bit worst for wear. All that's left to do now is to paint the walls and wall paper where i want paper to be. I actually decided to decorate the flat this year and planned on doing it in March, just towards the end of the month as we are off on holidays in April and it would be nice to come back to a freshly decorated flat not having to worry about the dirt and dust.

The trouble with decorating and wall papering the flat is the physical side of things. I am no longer able to paint like i used to or reach tall walls or paint ceilings as it seems to put strain on my shoulders and neck and after about five minuets of painting i end up in agony. If i then continue and ignore the pain i will then end up getting a big attack all brought on by just simply trying to paint my walls with a roller. It’s not fair i feel like an old man, not able to do the smallest of tasks that, when i was younger, i would take for granted and now that i get these attacks i am finding myself worrying about doing a small job. The only thing i can think of is to get someone in to do it for me and help out where i can. This is a good idea except for one little point! It could become very expensive having to call people in every time you want to paint your flat, refresh a wall or clean the ceiling, then there is the cost of the materials all the time. Ok i agree you have to purchase the paints anyway and the basic materials such as brushes and rollers but these can be cleaned and used again. It has always been mu experience when you get someone else in to do the job they never seem to clean the tools they used and they end up getting thrown away so you have to replace them all over again.

With all his time on my hands i have spent time organizing my fishing tackle waiting eagerly for the weather to change that little bit more so i can get out on the bank fishing again. I must have the most organised tackle box ever but at least its all ready so as soon as we get a break in the weather i am up and gone fishing with out delay. I have also been spending time on the computer making sure i have done all the graphic work and web design work for my web site as keeping it up to date and looking good is important so that readers come back time and again to read the adventures we get up to when out fishing and now with new products to test for the company Total Outdoors it has become more important i keep on top of things. I missed the first fishing competition of the year that was being held by the Llanrumney Angling Club at Cefyn Mably Lakes in Sunday but from what i hear i am actually glad i did miss out as they don’t seem to have had such a successful outing as they thought they would have.

Falling asleep where i stand!

Yesterday they started early, and to be honest i have had a lot of these attacks over  the years but for some reason these felt different. They have been non stop since yesterday evening. I have had an attack every hour so far or maybe even shorter time in between the attacks. My head and neck is killing me. It is probably due to this weather front that is above us at the moment and a huge low pressure area that is bringing a lot of rain and cold icy weather with it. The only trouble with this is it is causing me murder.

I suddenly break out into sweat, as if its pouring of me like a tap running, then i get the shooting pains over the top of the head and then the eye starts and  feels like someone with a hot poker is trying to push its way through but can’t. Then i get the sharp pulling over the top of the head into the neck causing me what i can only describe as cramp in the neck. Followed by ages of pure pain and feeling sick to the stomach and light headed as if you are about to pass out. There are time i wish i did just pass out at least i would be unconscious and not feel the agonising pain it leaves me in. All i can do for ages is to massage my head vigorously with a soft cloth or old t-shirt. this causes friction with the skin on the top of the head and helps me to not control but bare the amount of pain i get. I also use the electric fire to put heat on the side of the face. By placing my face close enough so that the amount of heat matches the amount of pain and then try moving away slowly so that the pain decreases as the face cools down. the only trouble doing this is i can see me ending up scaring my face by burning it. Some times it takes all of these actions in order to deal with just one of the attacks, i have to repeat this process several times in a day when i am bad and it drains all of my energy.

When the attack is over is leaves me feeling weak and it is painful to walk about as i still get pains up the neck into the neck, or possibly the other way around, for hours. My head and face is constantly sore to the touch and my back is always in pain. The legs feel like they have turned to lead and when walking it takes an awful amount of effort just to take a few steps. When you get the pain in the back it can become very sharp and sometime even spreads into the top of you buttocks and makes the left cheek hurt just as much as the back. I have been so tired lately i am just falling asleep where i am sat due to the lack of sleep during the nights as to fear sets in of having an attack and you just can’t get to sleep no matter what you try and then woken by the beast again in the early hours after you have only just managed to fall asleep in the first place.

When i get periods like this i just don’t know what to do. Sometimes it seems like the medication is working and the attacks have reduced in number but then i still get the days when i wish i was dead. The pain becomes so bad and draining you just don’t know what way to turn. the attacks just keep on coming and it seems like my condition is getting worst over time.I know everything is just speculation at the moments and i still don’t understand what is going on. I get times when i think i have this beaten and i am in control but then i get moments when i think all is lost and it just seems worst than ever before. I cant wait for my meeting with the consultant in a few weeks as maybe it will help to know what if anything is causing it. I still don't know what i will do if they say there is nothing there and this is the way you have to live for the rest of your life. Its something i have been dreading but am hoping the medication will take care of it if that is the final verdict. All i can do at the moment is try and control the pain and hope this bad period passes quickly so it doesn't drain me so badly.

Can’t wait for scan results, only 2 weeks to go!

Awake at 3am yet again. Not with a full attack this time but the shadow feeling on the side of the head. A feeling of pressure pushing down on the side of your face. It sometimes gets so strong that it causes pain almost as bad as the attack. When it becomes this bad it is impossible to sleep. No matter how hard you try the head just keeps on sending shooting pains into the neck causing you to feel so uncomfortable no matter what position you lay in.

I am not supprised to get the shadow strong this morning as it is raining outside. It is raining so hard i thought i had left the tap on in the kitchen. This means there is a low pressure area of weather above us and this is what causes me to get the worst shadows. At least it isn’t more snow and freezing cold weather. This is a good sign as it means it is starting to warm up and it won’t be long before i will be able to go fishing again.

There is a fishing match today being held at Cefyn Mably lakes by the Llanrumny Angling club and i was booked to be fishing in it. With the weather still be almost freezing despite the rain washing away the last of the snow. There is just no way i would be able to fish it as i would end up having an attack every half hour. Although when i fish i take what is called a day bivi, a small tent like structure that i can hide away in when an attack comes to take my injection and let the attack ease. Then i can continue my fishing as soon as i start feeling better again. The trouble is when the weather is this bad combined with very low temperatures its just not worth taking the risk and putting myself through pain.

Only 2 weeks now to wait for my scan results and finally see if there is something they can do about the attacks. I have this feeling they will say there isn’t anything that can be done but they may be able to stop the swelling on the top of the head. It is possible if they do stop the swelling it may decrease the amount of attack i get and then again it could make it worst i just don’t know. It is horrible guessing what is wrong and not knowing if anything can be done. I will be so happy when i get the results whether good or bad.

Recovering from a day of non stop pain!

Yesterday was one of the worst days i have had in a long time. The attacks would not stop coming! It seemed the harder i tried to keep the attacks from building the more attacks i would get. I have to admit i was doing loads of running about in the morning as i had to top up my electric and gas and had to do some basic shopping as my cupboards were looking a little bare as i keep on putting it off due to the head. I managed to get all my shopping and house work done by lunch time only to be rewarded with one of the most painful afternoons i have had ever. The attacks were one after each other and it seemed like they were just getting worst each time. I was able to abort what i thought was 2 of my worst attacks by using my injections but as soon as i had the second one within half an hour of taking it i ended up with yet another attack. No matter what i tried they just kept on coming. I know for a fact i had over 10 attacks in the afternoon and another 4 or 5 during the night.

I was again woken at around 3am this morning with a small attack and a very sore neck. After the attacks yesterday it has left me with a very bad neck. Even keeping still it is hurting. If i try and move it from side to side i get shooting pains straight over the head and behind the eye. I also have some very strong shadows so either it is the after effects of yesterday or i am in for another very painful day today. I can’t wait to see my specialists to ask him why this just keeps on happening and what i can do to stop them form building. Not long to go now only a couple of weeks and i will get some answers.

The snow has been washed away by all the rain at last. The temperatures have risen slightly and it looks like we are slowly going to start improving over the next few weeks. I don’t think the cold spell has quite finished yet and we are sure to get a few more days where it drops into the minuses and the cold winds will still be there. I am continuing to make sure no matter what i stay wrapped up warm as it has helped me to control the amount of attacks i have been getting. It is starting to look like i managed to get through this winter with out too many problems unlike last year when i was getting so many attacks i couldn’t even visit my mother. Lets hope this weather now holds of till spring.

With the forecast for milder weather i am now watching the skies with anticipation waiting for the break in the weather where i can go fishing again. I have had to miss my first competition match of the year being held tomorrow at Cefyn Mably Lakes, my local fishery. This is the start of the winter league and now i will miss out. With this cold snap still in play and icy winds blowing across the water there is just no way i could sit there at the moment with my head the way it is. I couldn’t imagine the amount of pain i would be in if i did go and fish it. A small part of me was hoping it was going to be postponed until the start of next month and maybe i would have got away with fishing it then but these things happen and these are the sacrifices i must make in order to stay well.

Back so painful you can no longer walk…..

Again woken at 3.30am this morning to a cold start to the day causing me agonising pain. I can feel the cold on the top of my head when i wake up and have to rush into the front room and try and warm it up as fast as i can using the electric fire and also putting the heating on full so that the temperature of the flat is up above the 15 degrees mark. Cold always seems to make any pain a lot worst than it is. I remember hurting my hand whilst out in the cold and it always seemed a lot more painful. Yet again i have been left with a sore neck and bad back that keeps on giving me the shooting pains right up the spine and over the head. If i walk about i also start to get pains in my legs so i tend not to move about to much if i am having a bad day. Even when sitting still the back starts to ache and hurt after a while so i am constantly shifting position or having to move about just so it doesn’t end up causing another attack to build and start. I have found one spot in my neck that if i massage it hard enough it starts to ease the back pain but the only trouble doing that is it starts to hurt my fingers from applying hard pressure constantly to the same point in the neck and then the neck will start to hurt and ache. So no matter what i do i end up in pain.

On the up side i am now sure the medication is definitely working as i have seen a huge reduction in the amount of attacks i get in a 24 hour period. You may think i am mad as i am still getting the attacks daily but when you look back to what i was like last year i can see a huge difference. It is such a shame i didn’t start writing this blog a year ago as by now i would be able to out the data together and actually see how the attacks have changed over time. The only thing i am worried about is that even though the attacks have reduced and i am now able to control the condition using the tablets, injections and oxygen i still believe it is getting worst. It seems to have spread from my head down into the neck and now down into the back. I also believe it is slowly moving towards my legs as i do sometimes get real agonising pain as i walk the short distance to my chemist to pick up my weekly medication. I have now started to use the oxygen on a more regular basis and now sit for 20 minuets every day even if i don’t have an attack as i believe it is helping to stop the attacks from building. When i do have an attack, if i am able to use it, then the oxygen can even reduce the amount of time the attack lasts by 50%. Unfortunately i am not always able to use it when having a big attack as trying to keep still or place a mask over your face when you are in extreme pain is almost impossible sometimes so i have to ride the attacks with out the help of the oxygen if this happens.

I am looking forwards to my meeting with the specialist as i have so many questions now that i would like to ask and get answers for. If they turn around and tell me i have to do this for the rest of my life i am sure i can cope with a couple of attacks per week if i can get them to reduce down to that. Only having one or two a day is a huge improvement and i have started getting my quality of life back. I know its going to take time and going to be a long hard journey trying to get my health back together again and i have to make sure i always take precautions not to set of any attacks. I am still locking myself away and not going out especially in the cold weather so i can avoid it. I have started going up my mums every Sunday for dinner so that's a step in the right direction at least i can get out for one day in the week and visit my family. I have also started to go and do my own shopping again, apart from yesterday when my mother came to my rescue and did my shopping for me. The only trouble is when carrying the shopping back i always seem to end up aggravating my back and end up in agony.

The other day i was walking back from the shop with a bag full of shopping that was quite heavy and was carrying it in my right hand when suddenly the pain in my back started. The pain became so bad i was pouring with sweat even though the snow was on the ground and the weather was freezing. I then started to get even worst and it was so bad i couldn’t even take a step and was about to collapse. I began to panic not knowing what to do as i had never experienced this before now. Then, when i was at my lowest thinking this was it i am not going to be able to walk, suddenly all i did was change hands to my left hand and the pain began to ease. I couldn’t believe it. Something so simple as changing hands would solve the problem. This was so strange i didn’t believe it at first so i placed the bag back into my right hand and the pain came back again.This was crazy, the pain was really bad and was right at the bottom of the spine and slightly to the left spreading down into my buttocks and caused me almost to collapse to the floor but as soon as i changed hands it was gone. The only cause i can think of is the attacks i get. It seems to be an after effect of the attacks and the pain i get in my back. I am just praying it doesn’t start effecting my walking and lifting in the future and we nip this in the butt (excuse the pun) before it starts to get any worst.

I have been watching the weather religiously lately to see when the weather will start to warm up and improve. It looks like the snow is about to disappear as here in Cardiff it seems to have melted where i am and there is only slush on the roads and a little on pavements and roof tops. I have checked the weather for the next 10 days to see if it is going to improve and i can’t say that it will to be honest. Even though the snow may be melting and about to disappear we are forecast to have a whole week of  rain with no break in between so i can see us ending up with floods and all sorts. The temperature will be going up back  to the 7 or 9 degree mark and increasing to a massive 11 degrees when the weekend appears in the first week of February. Again i am hoping as the weather improves so will my condition and i will start to get pain free periods again that won’t just last 1 or 2 days and will eventually last 2 or 3 weeks at a time allowing me to start putting my life back together.

The beast is back for another early morning call!

Here we go again! Another early call from the beast woke me up at 4am this morning and lasted just over an hour. The pain in my head was so bad all i could hear when having the attack was loud ringing in my ears. The pain level also made me as sick as a dog and i spent around 10 minuets stuck in the toilet heaving. Luckily i wasn’t actually physically sick, just heaving every couple of seconds was bad enough and has left my throat sore and a chest that sounds like an empty drum when you hit it. The neck again feels like it has a golf ball stuck in it and the back is killing me.

The snow is back and so are the icy conditions and below freezing temperatures. This is what has set of the early attack. Again i woke up feeling like i had a ice cold ring around the top of the head. Its not until the pain starts do you realise what is happening. It's really weird as you expect to be feeling tired and half asleep but for some reason you are wide awake and don’t even feel tired until the attack is over. It takes around 30 to 45 seconds before the attack kicks in and you realise what's going on. You have to rush to get your injection and pray that you have taken it in time to abort the attack before it builds to a level where there is no chance of relief until it has run its coarse. again the pain was to much for the injection to cope with and i ended up having a full blown attack.

As soon as i woke up i turned the heating back up and also used the electric fire to warm up my head as quickly as is possible in order to help manage the pain. With the weather being so bad it has taken longer than usual to warm the entire flat up so i am sat typing this with the electric fire by my side keeping the temperature up so the beast stays calm and doesn’t start of another attack so soon after the first. Now that the body is warming up i can feel the aches and pains slowly easing off and making the pain a lot more bearable. My back is still getting shooting pains every now and again and i am finding it very uncomfortable to sit at the desk typing. I have to keep changing position as if i stay still too long the pain starts to build in the one area too much.

With more snow forecast over the next couple of days i find myself being trapped in my flat unable to go anywhere due to the fear of attacks all the time. I am hoping by staying warm and staying indoors i won’t get as many attacks and they won’t be as painful as they are when i am cold or the wind catches my face. I am actually praying that i don’t get anymore attacks today full stop. They always seem to drain my energy and make me feel very ill, as if i am run down or makes my feel like i have a cold or virus coming. What ever is causing these attacks seem to be getting worst even though the medication seems to have reduced the attacks significantly i am still getting the odd attack but they are so strong nothing seem to be able to stop them. The main reason i say it is getting worst is due to the fact that it seems to be spreading into my neck and down my back.

Here comes the snow beast…..

So much for the pain free periods. Yesterday i couldn’t stop the pain from building up, especially in the back when i am walking. This would also set off my head attacks and i would end up in real agony with both my back and my head going at the same time. The injections just wouldn’t do anything. At first it seemed like they had aborted the attack but after about five minuets it would start again, even stronger!

I know the back is due to the attacks i get in the head and neck but it was the first time i was in pain for the whole day. Normally i can control the pain by being careful what i do and making sure i stay warm so the cold doesn’t set off my head but for some reason it didn’t matter what i did. Even if i was laying still and flat on the floor ( yes i even resorted to laying flat on the cold floor) to try and stop what ever it was from causing the pain it would still become painful and cause me shooting pains right up the back into the neck and over the top of the head. I am sure it is something to do with the nerve and can only guess that it is the cold weather and icy conditions due to the snow that is causing it to play up so badly.

Again the cold set off a big attack this morning mainly due to me running out of gas and not turning the emergency on. It wasn't until after the attack i noticed how cold the flat was and checked it. My own fault really as i had £20 credit still on my gas card and had forgotten to put it in (stupid mistake). As soon as the flat started to warm up the aches and pains in the neck have eased of and the head is now starting to behave itself again. As far as my back is concerned i haven’t yet had any major pains and am taking it very easy not to aggravate it again. Let’s hope it doesn’t become as bad as it was yesterday.

The weather has turned bad again and we have had more snow with a lot more forecast in the next few days. Thankfully the end of the week is looking better and it should warm up and we should also get some rain that will was the snow away. My fishing match at the end of the month has now been postponed until the first week of February. I am looking forwards to fishing the match and using some of the new equipment i have bought. It is actually being held on the day before i go back to hospital for the results of my scan. I can’t wait.

Pain in my back causing walking problems…

Well i didn’t manage a lay in today as i was again woken at 3am by the strong shadows on the left side of the head. I didn’t get an attack but it was so uncomfortable it woke me from my sleep. I tried to go back to sleep but was again woken by the beast at 4.30am but this time it was a massive attack. I hate these strong attacks as no matter what i try i can’t seem to stop them from happening. Even though i took my injection the pain was so strong it just over powered it and made the injection redundant. The attack lasted just under an hour and has left me again with a very sore neck and face. If i just touch the cheek on my left hand side i can feel sharp pain shoot along the nerve and over the top of the head on the left side into the neck. If i use my nails, that i have cut short so are blunt as anything, they feel sharp as if i am pushing a needle into my skin. When i do it on the right hand side i get nothing except a dull pushing feeling that you would normally get if you push your finger into your cheek.

With my head being so tender today i will have to be careful not to aggravate it and cause more attacks to appear. The neck is the worst thing as when ever i move my head i get sharp pain in the neck and that in turn causes pain to shoot over the top of the head. I am also getting strong pains again in my back and down my spine. The pain is so bad even sitting at the desk typing this blog is causing me to get shooting pains up the spine. When it is like this it is impossible to get comfortable. No matter what i try i still get the pains. If i lay down on the bed for a while it seems to ease it at first then after about 10 minuets it starts to get bad again and as soon as i move there is pain.

These pains in the back are relatively new and only appear after a bad attack. As far as i can work out it must have something to do with the muscle or nerves.  I am starting to wonder if i have trapped a nerve in my back or when i am having the big head attacks it is causing something to swell and in turn causing something in the back to happen and that's why i am getting the pains. I will only find out, for sure, when i get the results of my scan. Not long to wait now, only a few weeks, and i will know what is going on and what my options are. The only thing i am really worried about is the walking side of things and carrying heavy weights. I seem to be getting a lot of pain when walking, especially up hills.

This pain is usually after i have had a big attack in the morning but has appeared out of the blue a couple of times even though i had not had any attacks to set it off. I seem to get sharp pains in the front of my legs right up to the knee and also in the back of my legs from my buttocks down to behind the knee. If i am carrying shopping then the pain in the back can get very bad and on a couple of times has stopped me in my tracks. This only seems to happen if i am carrying a weight in my right hand. If i swap the weight over to my left hand then the pain begins to ease away. The pain in the back is right on the spine in the middle and seems to spread into my left buttock every now and again.

I haven’t a clue what is causing it and why it is doing it all i know is it is starting to worry me as the longer i seem to be waiting for results and treatment the worst my condition is becoming. I am at the maximum dose of my tablets so now its a waiting game to see if they can build up enough resistance to stop these attacks from appearing. I know they are working, as i have repeatedly said in my earlier blogs, as i am getting a lot less attacks than i usually get. Even though the weather is freezing cold and we have had snow i haven’t been in as much pain as i was last year. Lets hope that if the tablets do eventually put the beast to sleep then the back and walking problems will disappear along with it.

Pain seems to be getting worst and spreading!

At least i wasn’t woken up by a banging head again early in the morning and actually managed to lay in till around 8am. The lay in was so needed at the moment as i have been feeling like i no longer have any strength. It seemed like all my energy was gone by midday and no matter what i tried i couldn’t stop feeling tired and yawning. A couple of days in a row now i have fallen asleep around lunch time only to wake early evening and then feel like crap for the rest of the night. Then only to be woken again at 3am with a massive attack. I am wondering if this tiredness has something to do with setting of attacks.

I know for sure the cold is a main trigger and with the freezing conditions we have had i can understand why the attacks are happening. The only thing i can be grateful of is the fact that they have reduced in number compared to last year but haven’t reduced in the level of pain i get. I am now up to 300mgs of Pregabilin and on the first day at this dose. I know they are not to abort the attacks that i am getting but are being used to build up some kind of immunity that will put the attacks to sleep or into remission as the specialist explained. So i am not waiting for immediate results, it would be great if it was, but have to wait for the tablets to build up in my system and hopefully will start to get pain free days a lot more often and eventually most of the time if the tablets do their job.

The shadow i get is quite bad this morning but i am yet to have an attack even though i keep feeling it build it then just disappears. The shadow itself can be painful enough and sometimes can last the entire day with out getting an attack so its very hard to judge when one will appear. All i know is i haven’t had one yet and am praying i don't get one at all and get a pain free day as its been a while. The snow outside seems to be melting but the temperature is still freezing cold. If we get some rain it will was it all away and that will be the end of the snow. Unfortunately something inside me is telling me this is not the last of the snow and there is more on the way. I could be wrong!, I really hope i am!

Even though i haven't had an attack this morning it still feels like i have. I am getting a lot more pain in the back than i used to and keep getting shooting pains down the spine. I also seem to get a lot of pain in the lower back when i am walking. When i walked to Tesco yesterday i nearly couldn’t make it home. The pain in my back was so bad i was sweating with each step and cringing in pain. It was strange as i was carrying some shopping in one bag, witch was quite heavy, and as soon as i swapped hands the pain eased away. Strangely enough it was when i placed it into my left hand and the weight was on my left arm the pain eased away. But when i put it back into my right hand and the weight was on my right side the pain came back. So i changed back to my left immediately and the pain was gone. Now this is strange as the pain i get in my head is on the left side so you would think if the weight was in the left arm pulling down on the left shoulder i could understand the pain but it was completely the opposite and very strange. This is something i will have to take up with the specialist.

I have been told that this condition is incurable and wont get any worst than what i am getting now. However i believe i am slowly getting worst as time goes on and i will end up in real trouble if we don’t find solution soon. It seems to be effecting my walking and what i do such as carrying weighty bags in my hands when i go shopping. It has also taken its toll on my eyesight as i seem to get blurry vision when an attack is coming or when i am in pain. After an attack there are times where i can’t even walk. If i try to get up from the floor the pain in my back and head just stops me in my tracks and i just have to lay or sit there until it eases enough for me to sit on the sofa. Other times i have had to sit on the floor with my oxygen mask on as i seem to be so out of breath and strength and find it difficult to breath.

Thankfully my appointment with the specialist is soon and there are loads we have to discuss. There are answers that i need in order to put my mind at rest and hopefully help me come to terms with this condition. I have joined every support group and internet based organisations all based around dealing with CH (Cluster Headaches) and i have read so much information about the condition it is beyond belief. One thing i have learned through all this is that not everyone suffers the same way. There are so many variations of the condition i understand why it was so difficult for me to get a diagnosis. The only trouble is, it has taken so many years it may be a little late to actually do anything about them. Fingers crossed and lets hope for some good news in February

When will the early morning beast go away!

You know it feels like these early morning attacks have been going on for ever! I can’t remember the last time i had a break from them. I know i am now only getting 1 or 2 attacks during the day now and maybe 1 or 2 in the evenings but boy are they painful ones. They always seem to be the worst and each time you have an attack it always seems worst or stronger than the last one if that is at all possible. The level of pain has left me with a sore neck and the side of my cheek on the left feels like it is broken. The eye feels like someone has pushed a hot poker through it and then tried to pull it out again slowly and there feels like i have a ball in my neck.

Why i get a ball feeling in the neck i don’t know unless that's part of the cause of the problem. It actually feels like there is something there when you massage your neck with your fingers. It feels like a small ball about the size of a golf ball stuck in between the tendons and muscles. I think there is something swelling up in the neck causing pain some how and this is as a result of my head attack. It’s possible the nerve is causing something to swell or even the nerve itself, if they can actually swell i don’t know. Its all guess work at the moment.

I have my appointment with the specialist so will finally get some answers as to what is going on. I will get the results of my scans to see if there is actually anything they can do about my condition or what is causing it. I will finally find out if there is something there, causing the head to swell up all the time. If they tell me there is nothing there and its just the nerve that is damaged as suspected and the swelling is just from arthritis of the area where i had my head split open, then i will accept it and will have to sit down and plan how i am going to cope with this condition for the rest of my life.

But if they tell me there is something there, after all this time and pain that i have gone through i am not sure how i will cope until i get the answers. Well they have given me an early appointment on Monday 11th February at 09.30 so i will hopefully be the first seen. This gives us plenty of time to discuss my options and what's going to happen in the future. As long as i can continue my fishing around Wales i don’t mind!

Snow, Snow and more Snow!

Well so much for trying to stay pain free and out of the cold. I had this feeling the snow was going to arrive but didn’t realise it would be so soon. I woke up early hours again with an attack but it wasn’t like the normal ones i get in the morning this was more targeted towards my neck. Every time i turned my neck i would get sharp pains shoot over the top of my head and behind my eye on the left side. If i kept the head still the pain would stop it was very strange. I managed to massage my neck to the point that the pain began to ease away and it suddenly just disappeared. I could now move my neck and there was no pain, i must have trapped a nerve or something else that caused this type of attack. at least it wasn’t a full head attack like i normally get first thing.

       

This is the picture i woke up to this morning. The snow had fallen during the early hours and settled leaving at least 3 inches of snow on the ground. Now considering its the cold that always sets of my attacks i was extremely pleased not to be in agony like i was last year. I have taken precautions this year so i am not caught out by the extreme cold weather and icy conditions. I am making sure that if i have to go out i wrap up warm and make sure i use a scarf to cover the face to stop the icy cold wind blowing on the cheek and eye and end up causing me big attacks. On the news they are warning for people to stay indoors unless really necessary as the weather is forecast to be very bad over the next couple of days.

I have to admit i really do hate the snow. I think it goes back to when i was younger and always ended up wet and cold after being out playing in the snow making snowmen and having snow fights  with your friends. I was always the one that would end up catching a cold or worst the flu. Normally when we get ice or snow i always end up falling some how. I tend to either slip on the ice or end up falling in the snow, its just my luck.

Well i am hoping this weather doesn’t last to long as i am worried about it setting of a chain of bad attacks due to the cold weather. I am hoping by staying warm and trying to stay indoors out of the snow i should be able to get through this period with out having too many attacks. This now convinces me that the medication i am taking is really having an effect and reducing the amount of attacks i get as by now i would be in complete agony and the attacks would normally be one after the other with about 20 minuets to and hour between each of the attacks. Last year was one of the worst experiences of my life and i have ben praying not to repeat last winters attacks as i don’t think i have the strength anymore to cope with them when they are that bad. Thank god for my injections that's all i can say at the moment at least i am able to abort a massive attacks if and when it comes.

Who needs an alarm clock when you have CH

I could set my watch by the early morning attacks i am getting. Guaranteed at 3 am the shadow will start to build and by half past i will be in absolute agony. The attack usually lasts around an hour but i can half that time if i am on the oxygen when the shadow starts. So far the oxygen has been able to reduce the length of time the attacks last by half and can sometimes abort an attack all together if it is a smaller one. Its strange how i get different levels of attacks. Sometimes i get the small ones witch i liken to tooth ache and is bearable when it starts, then i get the intermediate attacks that always seem to be started in the neck and leaves you feeling like you have a golf ball stuck in your neck. Then there are the strong ones, these are the ones that i can’t bare the pain of and have never experienced pain like it. If you could imagine all your pains and breaks and tooth aches and head aches and migraines all hitting you at once and then you might have a small idea of what the attacks can be like. The worst this is they are under the skin and deep inside the head, or so they feel, and there is no way of rubbing them better or massaging the pain away, but it doesn’t stop you trying.

At least the attacks are now starting to show some sort of pattern as before they were just un-predictable and there was no way of trying to avoid them as i didn't know what was starting them. Mind you i still don’t know what it is that causes the attacks but at least i can now tell when an attack is about to happen and take precautions to stop it or at least control it. I am taking my medication regular and praying it will eventually work and i won’t have to put up with the attacks all the time. I do understand it takes time and has to build up in your body and i have definitely seen an improvement since i started taking the tablets so hopefully they will work and this will soon be a thing of the past. I am almost at the maximum dose and have been able to stay pain free during the daytime as long as i don’t do anything to aggravate my condition.

Some times its hard not to aggravate it as if i do something that pulls the muscle in my left shoulder or carry shopping back from the shop in my left hand then i start to get attacks build. If i ignore the warning signs it is almost guaranteed that within 10 minuets of getting the warning signs i will end up having a massive attack. The amount of times this has happened to me i have lost count. Also the amount of times the cold weather has been the cause of the attacks just by feeling the cold breeze on my face and in my left eye can trigger one of the worst kind of attacks i get. If i am not careful enough i start to get a cold feeling not in the front of the eye like you would think but behind the eye. This cold feeling will then slowly change into pain and the pain will increase to levels that will eventually make me pass out. The same is when i get a cold neck and that starts to make my shoulder and neck ache at the same time. again this will set of the bad attacks and one of the main reasons i am so scared to go out in the cold wind and icy weather.

Its amazing at the different kind of attacks i can get and how many different triggers there are that can actually trigger an attacks. Its not until you sit down and do something like write a blog that you notice all these things.When i first started this blog i thought to myself what on earth was i going to write about and put in it. After deciding that i would do a small update each day, rather than just one big one every week or month, i soon saw how fast a blog like this starts to fill up. I will have to go through it all and make a list of all the different triggers just to see how many there are. For now i will just keep updating and praying that this medication starts to kick in properly when we reach the recommended dosage and hope to get these attacks under complete control.

Get ready for the real winter to start!

Again i have been woken up by a nasty attack in the early hours this morning. A strong attack that has left me with pain in my neck and down my back. Also when i try and walk i get sharp pain shooting up the front of my legs witch i find very strange. I can understand why the neck and the back get pains after an attack especially if it is the nerve that is damaged then it would explain why the pain travels down the back. But there is no explanation why the legs should get shooting pains and also why they feel like lead weights when i walk. I don’t get it all the time but every now and again i start to walk and its like i am doing weight training in the gym. My legs become so heavy to lift it actually takes my breath away.

The weather is about to change and the temperature will drop to almost freezing over the next week so i am in for a bit of a painful ride. When ever we get snow or ice or the temperature falls to almost freezing i always end up going through 2 or 3 weeks of non stop attacks. I wouldn’t mind it so much but it takes my strength away from me and makes me feel so week i can hardly get out of bed let alone do normal daily tasks. When ever i get a couple of weeks of non stop attacks i always end up ill at the end of it either by catching a cold or injuring myself during one of the attacks. I am hoping that this will not be the case this time around and the tablets i am taking are actually working to put this beast to sleep. Last year was a horrible experience during the winter and one that i don't want to repeat. With the help of my injections, oxygen and tablets i am taking i am praying that this year will be easier to cope with, this is the real test.

I have been dreading the time that the real winter weather would appear and the ice and snow turns up and reminds us just how cold it can get during the winter months. All i can think about is the time i went through last winter and cant shake the images of me in pain from my head. So far so good as the medication seems to have worked by reducing the amount of attacks i get in a 24 hour period but we are yet to see if it changes the ones that are set off by the extreme cold winter weather. All i can do for the time being is stay warm and try and stay out of the weather if i can help it. Try and deal with each attack as it happens and just pray they won’t be as bad as last year.

It is horrible actually waiting for attacks to happen. You can feel them building in the head and neck and know it won’t be long before you are in agony again and have to go trough yet another attack. The strong feeling of pressure on the side of the head, what we call the shadow, starts to build and become so strong you think your head is going to explode. You begin to panic and try anything to stop the pain from coming but no matter what you try you just can’t seem to ease the pain. I have found that drinking coffee seems to help ease the shadow feeling and also energy drinks that contain caffeine. I read this on the “cluster buster” web site but didn’t believe it at first. “How can a drink stop the pressure? or ease the pain?” i thought. I was wrong! it does work to ease the pressure.

Waiting for a weather break to go fishing…

Another pain free day to chalk up. I managed to keep the attacks from building for most of the day. It wasn’t until the evening i started to get some strong shadows but managed to keep them from building into attacks by spending half an hour on the oxygen. This isn’t the first time i have used the oxygen as a preventative rather than using it to reduce the length of time the attack lasts. Not always are you able to use the oxygen before the attack as normally the attack happens so fast you don’t get a chance to. For some reason yesterday, as soon as i started to feel the pressure on the side of my head i jumped straight on the oxygen to see if it would work and it did.

I am still getting a lot of pain in my back and neck and am starting to wonder if i haven’t done some kind of damage whilst i have been getting my attacks. because the pain is so strong when you do get an attack you don't realise if you hurt yourself when you are moving around or massaging you head vigorously. With all the rolling around in pain it is easy to knock yourself or pull a muscle and not even realise you have done it. Also when the pain gets very strong there has been a couple of occasions i have actually passed out so i could have hit my head or shoulder quite easily and could also have done something to my neck with out noticing it. I don’t think i have and believe that all the pains and aches are from the attacks and the after effects of the attacks. 

I am in a better mood today as yesterday we had some good news about my mother. She hasn’t had to go into hospital so quickly and doesn’t have to have an operation immediately as we thought so fingers crossed my mum improves and they get things sorted for her. She has been a lifeline for me over the last couple of years with my illness and i couldn’t have got through it with out her. The last thing i want is to see my mother go through pain like i have had to and am over the moon that she is better than they thought. I know eventually she will have to have an operation and treatment but at least its not a sudden rush and we can all come to terms with it as it happens and be there to support her when and if she needs it.

Another bit of good news was i have been accepted as a filed tester for Total Outdoors and their products. As i go around the lakes and rivers of wales fishing i will be able to test some new and exciting tackle and i get to write a report of what i think and how it performs. This is something else to keep my busy and take my mind of the constant attacks i get. As the spring begins i know i will start to see a reduction in the amount of attacks i get in a period so i will be able to get out a lot more and will be able to go fishing again as i am really missing it at the moment. We are currently watching the weather for a break and if it is warm enough we will be going pier fishing down at Penarth pier in Wales.

Not in the mood for anything today!

Well i managed to stay relatively pain free yesterday. I did have a small attack towards the evening but it only lasted about 5 minuets and then it was gone. I thought the cold would have set off loads of attacks. When i walked over to my mothers house i could feel the icy wind blowing against my face and in my eye and was convinced i was going to get an attack but nothing came. This has now got me more convinced than ever that the medication is starting to work slowly. OK i know i do get days where the slightest feeling of pressure on the head or the neck will set off attacks for the whole day or even the cold getting to the face will also start them to build but usually when we have bad weather or cold i am in agony and the amount of attacks i get are just beyond a joke but this year has been so different.

I am not having anywhere close to the amount of attacks i was getting last year or the year before but i will admit the big attacks when they come do seem to be stronger this year for some reason. I have to be thankful for the reduction as i don’t think i would have been able to manage another year with the level of attacks being so high all through the winter. I am so glad i now have the injections witch help me to abort the big attack when they come and the help of the tablets that are slowly helping to stop the attacks from building in the first place and hopefully over time will put them into remission completely.

My head has been all over the place the last couple of days as my mother is very ill at the moment and is being rushed into hospital today as they need to act fast to see what is causing the problems but it is looking like she will have to have a kidney removed. This has all happened so fast, she was only having a scan the other day and now she is on her way to hospital for a major operation. They have also found a lump or shadow on her kidney so they are moving very quickly in case it is something worst. I am praying that this is not the case and that the worst they have to do is remove the kidney due to failure as long as the other one is fine. My brother and I have both agreed if she needs another kidney we would both be willing to give one of ours in the case that it is needed.

The problem i have been getting with my head seems so small compared to what is going on with my mum at the moment so i am feeling a bit ashamed of myself. Sometimes i wonder if i put too much stress on my mum with all the attacks i get all of the time. The constant battle for pain relief and the constant worry all the time can’t be good for her or any person come to think of it. I know it has worn me down over time, all the stress and worry all the time, wondering how many more attacks can i go through and if, when they are bad, it is the attack that will finish me off. I know its sounds stupid but sometimes i feel like these attacks will eventually kill me, even though the specialist assures me its not the case, there is something inside me that tells me different.

That's enough of the doom and gloom for today as i want to stay on the positive side and am praying for my mum to pull through. I know she is a strong lady and has always been like it but a couple of prayers wouldn’t hurt! Fingers crossed i will have better news and be in a better mood tomorrow.

is snow on its way?

I am not surprised at being woken up twice during the early hours, especially after the day i had yesterday. My head was playing up something rotten. Every time i tried to go over the shop to just to some essentials i would have an attack. Every time i sat for too long at the computer desk the back would start playing up and bring on an attack. If i was laying on the sofa i would suddenly become stiff and the pain would start and bring on another attack. If i was sat still watching TV the pain would build so i would have to move about. Then i would get sore from walking so would have to sit again, it just went on and on. No matter what i did i could not stop the attacks from building and the level of pain was intense.

This continued most of the day into the evening and by around 4pm i was so exhausted i went and laid down for five minuets on the bed with the TV on but turned down low so it was morn like a background noise. I looked at the clock it was 16.45 and my eyes slowly closed for what seemed like seconds or at least just a few moments and when i opened my eyes and looked again it was 23.20. I was so drained i had fallen asleep as soon as my head hit the pillow. It was pointless for me to get back up at this point so made sure my heating was turned on, so i can keep my head warm during the night, and went straight to sleep.

The attacks didn’t return till around 4am this morning with a small attack and i was able to return to my sleep after the attack had finished. Then again  at 6am with a huge attack that reminded me how painful this condition is. It has been nearly 30 minuets since the attack finished and i feel as if someone has drilled thee way through my eye and out the back of my head. it is still so sore that i am scared of moving it in case it sets of yet another attack. And believe me it does when it is as bad as this.

I had my appointment with the doctor on Friday and agreed to continue increasing the medication to the maximum limit. I also asked about getting a portable oxygen device but unfortunately she hasn’t got a clue how to go about these things and suggested as did i that i wait until i see the specialist and discuss this with him. She agrees that by having this device it will enable me to get out of the flat a bit more and not shut myself away. Apart from that she was pleased that my health isn’t fluctuating and that i am in control of my bi-polar disorder and hope with time and the correct dose i will be able to control these attacks and hopefully put them to sleep and start to live a normal lifestyle for a while.

They have forecast sleet and snow over the weekend and into the week. The temperature has really dropped, as i found out when i went out in it yesterday and ended up in agony from the cold. I know for a fact that the medication is having an affect on me as i looked back to my attacks last year. In an average week i would get between 3 and 6 attacks a day up to a maximum of 8 or 9. Now i am averaging 2 or 3 attacks per day up to a maximum of 5 or 6 on a really bad day. As you can plainly see it has decreased my attacks by two thirds (2/3) and that is a massive difference. Winter last year was so painful i didn’t know if i could go on anymore and thought that this winter would actually finish me off. The changes for the better i have had since this all begun is only now starting to show. At least it is improvement rather than nothing and being stuck searching for the right medication. Fingers crossed it continues to improve as at times it feel hopeless.

Looking to be a lucky year…..

I was hoping that i would get away with another pain free day yesterday and only have to put up with the attacks in the early hours. I think i was hoping a bit too much. I ended up having two massive attacks in the afternoon. It was due to me going over the shop and getting the cold weather blowing on my face. The wind was icy feeling as i was walking so i am not surprised it has set me off. It could just be an isolated incident as i wasn’t taking to much care when i should have been. Lets hope i can keep the attacks appearing today. i have a strong feeling of pressure today, just on the left side. This is the shadow i always talk about, a constant feeling of pressure pushing on the eye and the neck at the same time.

I have my appointment with the doctor today which i am looking forwards to as i have some questions for her. Hopefully she may have heard something about my brain scan but i doubt it as i think i have to wait for my appointment with the specialist. We still haven’t got a date yet but my mother rang them and they did say there was a delay due to the specialist being ill over Christmas so all of Decembers appointments had to be cancelled and re scheduled. fingers crossed i will get a letter in the post either over the weekend or during next week asking me to ring and book my appointment, we live in hope.

An a different note, I am really happy at the moment as over Christmas i entered a few of the online fishing tackle competitions and actually won a couple. I have won a nice tackle carry bag from Fox which is very smart. I also won some specialise leader material from Taska Tackle. This has made me really happy as normally when i enter competitions i rarely ever win anything. Just before Christmas i won my fishing baseball cap from Korum (a carp fishing tackle specialist) and also i won some fishing bait from Marukyu, a company that makes some very special baits for fishing. It is starting to look like 2013 is going to be a very lucky year for me so i am praying that this luck starts to run over into my health and we start to get my condition under control.

Hope the pain free days will continue…

Well I managed another pain free day yesterday with only a few shadows trying to play up but they soon eased off. I was again woken by a small attack this morning but managed to go straight back to sleep. I then woke up at 5am but with no sign of an attack so I just ended up staying awake as I couldn’t sleep anymore. If it continues like this I will be happy. Only having to deal with one attack in a day is way better than what I have been having to put up with so far. I even went out in the cold yesterday to take some computer stuff up to my brother and didn’t even get an attack from the cold wind constantly blowing on the face. My neck was still sore and every now and again I still get the shooting pains up the back as I walk but I am starting to think this is a different problem and has nothing to do with my head attacks.

Every time I walk somewhere I seem to get these pains and a feeling like my legs have turned to lead. It may be where the nerve is damaged it is causing other nerves to play up but it isn’t all the time. It could also be arthritis as I thought before but I am not getting the pains in the other joints like I normally get when the weather is cold. The back seems to be an isolated problem and plays up when it feels like it. Also I seem to have got my appetite back and have been eating myself out of house and home. I cant remember the last time I ate so much in a day but yesterday, for some unknown reason, I kept feeling hungry and couldn’t stop eating. this is good as it is making me feel a lot more healthier and I seem to have more strength than before.

The weather is forecast to be very cold this weekend and the temperature will continue to drop over the next week with the threat of sleet and snow. This is the time I have been dreading! When the snow ice and sleet comes I know I get some massive attacks as the cold always seems to get to the face and neck and no matter how hard I try it always sets of some massive attacks. This was what it was like last year so I am praying to god that this year will be different and with the help of the medication and oxygen I will be able to stop the attacks from building. I have to make sure I wrap up warm and even use a scarf to wrap around the lower half of the face so it stops the cold getting to the cheeks and the back of my neck. I could be wrong and the weather forecast may be a little out as we are normally the last to get snow, in Cardiff, as it is a coastal city and it never seems to settle as bad as other places in the country.

For now all I can do is hope that these pain free days continue and the colder weather passes over us. I also have to start to get out a bit more instead of shutting myself away every day. Sat in the flat staring at screens, on the computer and television, is starting to make my eyes go all weird. I do love my computers but there is a limit to how much time you should spend on them. My eyes are starting to go blurry every day instead of just once in a while. I first thought it was because of my attacks and the head pain I always get that was making my eyes go funny but even when I don’t get attacks I am still getting blurry eyes. It just seems to come when it feels like it, I could be watching TV or reading something on the computer and all of a sudden I cant see the writing or details of what I am trying to look at and I have to put on a pair of glasses with 1 x(times) magnification and that seems to do the trick.

I have had my eyes tested last year and was told there was nothing wrong with them, maybe I should get them tested somewhere different and see what they say as it isn’t normal. I have gone my whole life not needing glasses and now suddenly I have to use them. I would say it was due to old age but I am not that old that my eyes are starting to fail me. I don’t mind if I have to start using glasses all the time as I think I look good in a pair of wire frames (ha ha). I sometimes wonder if straining the eyes can set of an attack. I know people suffer from head aches if they don’t use their glasses or if the strain their eyes all the time. So It could be possible that my eyes are also something else that can trigger an attack. I will have to ask the specialist when I see him.

My appointment with my doctor is tomorrow afternoon and I am looking forwards to it as I have a few questions for her. I also need to find out where or who I have to see to get a portable version of my oxygen treatment so that I can get out a bit more and if I have an attack outside I will be able to treat it and hopefully get it under control quickly instead of having to run home all the time and hide away. Slowly I am getting my life back, I lost my quality of life when these attacks started to become more frequent and over the years I seemed to drop even further. Now I am under treatment and medication I am slowly improving my situation and finding my quality of life is returning. fingers crossed this improvement continues.

Praying for mild weather this year.

Who need alarms when you suffer CH! Again i was woken like clockwork at 3am this morning with yet another attack. Its annoying especially considering i managed to stay pain free all day yesterday with the exception of the early morning beast call. Its seems like my attack pattern has shifted once again. The attacks during the day seem to have disappeared leaving only the late evening and early morning ones to contend with. Don't get me wrong, I still have strong shadows during the day and a sore neck and painful back. If i irritate any of these then i am guaranteed to have an attack during the day. Also if i go out in the cold and the cold wind gets to the side of my face or neck that will also bring on a big attack. So they haven’t just disappeared like i would hope, they are just manageable and if i am careful enough i can stop the attacks from appearing.

I am convinced once again it has something to do with the medication and now that i am almost at the maximum dose we are seeing what i hope are the results as it starts to help to put these attacks to sleep (so to speak). It could change again in a few weeks as this condition is so unpredictable. One minuet i am getting around 8 or 10 attacks in a day and then next i am only seeing 1 or 2. If they continue like this i will be very happy as having to deal with just one or two attacks either late evening or early morning is way better than what i have been going through. If i have to live with this condition for the rest of my life it is important that i find ways of managing it and these latest results are promising. i am getting a lot more rest than i was and i am not feeling so weak all the time.

One thing that i have noticed that is very important, especially in the winter months, is that if i allow the flat to drop in temperature below the 10 degrees mark then the head starts to play up and i will get attacks all day long. If i keep the temperature above this mark then it seems to ease the head and stop the attacks from building unless i do something stupid like pull a muscle or try and do things that will cause me to strain the left side of my body then this will also bring on an attack. This confirms my theory about the cold being one of the major triggers for this condition and something i should discuss with the doctor and specialist when i get my appointment. It can also become very expensive keeping the flat warm during the winter months especially now as the utility companies are all putting their prices up.

Oxygen also plays a huge part in keeping the attacks under control. Ever since i was prescribed the oxygen it has worked to half the length on the attacks and in some cases can help to abort an attack when it comes. Using the oxygen daily not only helps my chest and breathing and makes you feel more energetic but it seems to stop any of the smaller attacks from appearing. I will have to ask the doctor about portable versions of the oxygen treatment and maybe i will be able to get out of the flat a bit more if i had it with me.

There is a big change in the weather coming and i am hoping for the best. I am praying that we don’t get any snow or ice this year but i think its a bit too much to ask as i just know at the end of January it normally drops so dramatically the bad weather follows and usually ends up either sleet or snow falling. I have been doing everything i can in order to keep warm, if i go out anywhere. But no matter what i try, if the weather is cold, it normally sets of an attack and usually it is a big one. Fingers crossed for another pain free day today and hope i can keep the beast from showing its face. If i have to go out it is a case of wrapping up in layers and making sure i wear some kind of hat to keep the head warm. If we do start to get the snow and ice towards the end of the month then it will be time for a scarf to wrap around the face to keep the cold form starting my head off again.

The beast is back!

Oh well i was again woken at 3 am so the beast is back again. It was screaming pain that woke me this morning. A sharp shooting pain over the top of my head and behind my eye and down the side of my face on the left hand side. One thing i do find strange is why does the face droop on the left side when i am getting these pains. I think the pains are from a damaged nerve and if that's is the case then why does the nerve effect the face and make your cheek and eye droop when you get agonising pain.

Thankfully my mother chased up my appointment with the specialist to try and find out the results of my scan. Apparently due to illness all appointments were cancelled in December so they are now re-arranging appointments and will make me an appointment and send it out in the post so i should receive one soon. This is great news as finally i will start to get some answers. It can only go one of two ways. Either i have nothing there that is causing anything and i have to suffer this condition for the rest of my life and will have to find a way of managing the pain all the time or they have found something on the left side of my head where the swelling is and maybe they will be able to do something that will decrease the amount of attacks i get.

Yesterday i managed to stay pain free all day apart from an attack in the morning and a small one late evening. I am hoping for the same today. Let’s hope the attacks stay away and i can get on with things like cleaning the flat and also organising my fishing tackle and getting it all ready for my first fishing match at the end of January. Lets hope the weather stays mild and it warms up a bit by then, if the weather is still cold and wet i wont be able to attend the match due to the attacks and pain i will get. I am so looking forward to fishing this year and will hopefully catch some new personal bests and maybe even a record size fish.

At the end of 2012 i set myself a challenge as i don’t want to let my condition get the better of me and dictate how i live my life due to getting the attacks and pain all the time. I challenged myself to take on the rivers, streams, lakes and fisheries around Wales. To travel around and try out fishing at different venues in and around Wales an to write a review of every place i visit. We will also be trying out some places outside Wales as well as we are booked to go down to Cornwall in April and spend a week at a very nice fishing resort. I am really looking forwards to this holiday as not only will i be doing something that i love, fishing, but will also get a chance to take a look around the area and visit some sites while i am there. I am also thinking of going to France either at the end of the year or next year for our holiday but due to my condition i will have to take precautions if i do go. This is something i have to discuss with the other members first.

Well again i have been kept awake all morning as i was unable to go back to sleep after the attack due to the level of pain and the level of the shadow i have been getting afterwards. The neck again feels like i have a golf ball stuck inside it and the head is very tender to the touch. Normally i would say i was going to get another attack either soon or later in the day but just lately even the shadows have been easing off during the day and only seems to return at night or early hours so i am wondering if the medication is finally starting to work. I do still keep getting shooting pains up the back when i walk and down the front of my legs but it is not every day so i think this is something else and has nothing to do with the attacks. Maybe it is arthritis as i thought and that in turn aggravates my condition every now and again. Lets hope i am wrong and eventually even the pain in the back will eventually disappear, fingers crossed!

Wish the weather would maker up its mind!

I managed a nice lay in this morning and wasn’t woken by the beast in the early hours like normally. I did have an attack about 2 hours after i woke but nothing too bad. I am hoping this is the sign of a break coming up as i could really do with a nice long pain free period at the moment. I have been feeling run down just lately and feel like all my strength has disappeared. I have tried everything i know to try and make myself feel better. I have had early nights and tried to make sure i get plenty of rest but i am still feeling tired and run down all the time. My diet leaves a lot to be desired as i just don’t seem to have any appetite anymore. Even when i don’t feel hungry i have been forcing myself to eat and with the help of my mother and stepfather cooking lovely cooked dinners on the weekend you would have thought i would put on some weight or at least have strength but nothing seems to work.

Sometimes i really get so fed up with having the attacks all the time. Each day starts with pain and normally ends in pain and i get very few pain free days at the moment. I am praying to god that it starts to get better as the weather starts to get better and hopefully from March onwards i should se a reduction in the amount of attacks i get in a 24 hour period. I am currently at 250mgs of Pregabilin tablets in the morning and then again the same at night. I only have another 50mgs to go before the maximum dosage of 300 and hope that the medication will show some results soon. if it doesn’t it means having to reduce myself and slowly come of the medication in order to start all over again with another type. I have my appointment with the doctor on Friday so i will be able to discuss with her ways i can improve my chances of the medication actually working to put the attacks into remission.

I am still waiting for my results of the brain scan and am wondering when they will actually call me in to discuss them. I am still positive there is something there that is causing me to get more attacks than i should be getting with this condition but i could be wrong. It is so annoying not knowing what is actually causing them to happen. If i knew what sets them off then i would be able to take precautions not to set off the attacks but i am unknown territory. All i know are the main triggers such as cold or bright light or freezing temperatures that set off my condition and i am able to avoid situations where i irritate it. Lets hope the specialist will have some answers the next time i get to see him.

Well we are now into 2013 and the new year looks like its going to start very wet and cold. The temperatures are fluctuating constantly so its hard to tell if the weather is set to improve or not. I am patiently waiting for the milder weather to start so i can get back out on the river banks fishing again as i am missing it like crazy. I managed to get out on new years day but again i chose wrongly and it was close to freezing conditions and very little fishing action. Fingers crossed it improves soon.

Short rest better than none…

I actually managed to have a lie in on Saturday morning but continued to have attacks during the day and the evening. They were only small attacks so i was able to manage the pain and with the help of the oxygen managed to keep them from turning into big attacks. Unfortunately i was again woken at 3am this morning with another big attack. It was as if someone had turned on the taps and i was dripping sweat everywhere! It was pouring off me. The pain was so intense all i could hear was the ringing sound in my ears and my head felt like it was throbbing.

Again the swelling came up on the left side of the face and always seems to be at its worst when the weather is bad. Its the same with the pains i get in my back and when i am walking. They always seem to be at the strongest when we have rain or low pressure weather passing over Cardiff. When its wet i get so many aches and pains all in the joints you would not believe it. I have only been getting these pains since my head started to get bad and become a daily occurrence. I am starting to wonder if i suffer arthritis of the joints. I know my mother suffers the worst kind so if it is in the family it could be possible. Where i have had accidents and breaks seem to be where the pain starts and it is always bad weather that triggers the aches. It explains why in Cyprus i didn’t get the pains as it was “always” hot there, even in winter. When i came back to the UK is when it all started to become bad. The attacks turned from once a year to once every couple of hours and the aches and pains in the joints started to appear.

If i do suffer with arthritis there is nothing i can do about it anyway apart from take the correct medication to relieve the symptoms. It is possible that is also what irritates my head this time of year. Maybe the swelling that comes with arthritis is causing pressure on the side of my head making my attacks worst and more frequent. There are so many different things that could be causing me to have my attacks is un believable. Its not until you sit and try and analyse the problem you realise how many things it could be and why these scan results are so important to me. I am hoping that it won’t be much longer before i am called in about the results and we can hopefully see what has been going on. I have my appointment with the doctor this coming Friday so i will be able to ask her to push them a little and try and find out what’s causing them.

I have been watching the forecast very closely and i have noticed that this weekend is the last of the mild weather as there is going to be a huge drop in the temperature starting Monday. A drop from 11 degrees down to 5 or 4 will be causing hell with my attacks and i know i will be in for a rough time. Some are saying it is the start of the bad weather about to come, this so called “beast from the east” and with it comes snow! I am praying we don’t get snow this year as last year was terrible. I couldn’t even step outside the front door, as soon as the cold hit the side of my face it would immediately set of an attack and i would have to run straight back indoors. I wasn’t even able to go shopping for the 2 week period of snow we had and i am praying we don’t have a repeat this year!

Trying to hide from the beast!

It was another bad day yesterday with me getting attacks every couple of hours and feeling like i had my head split open all over again in between the attacks. The pain was so intense and just didn’t want to go away no matter what i tried. All the massaging of my head that normally eases the attacks when they happen was just making it feel sore all the time. Every trick i tried to ease the pain just didn’t seem to work yesterday for some unknown reason. I even used the electric fire again when i had an attack and by placing my head close to it so that the heat would be at the same level as the pain and then slowly move away so it cools down and then the pain will also decrease at the same time but for some reason yesterday when ever i tried this trick it just wasn’t having none of it.

Again i was woken early hours with yet another big attack and i also have some strong shadows again today so i think it will be another day of trying to do things in between attacks. It really gets annoying sometimes as you try and plan your day so you can get as much done as possible and then the attacks start and all your plans go out the window. All i can do is continue to take my medication as i am still on the increase with the drug and will be going up to 250mgs by the weekend witch means only 2 weeks until i hit the maximum dose of 300mgs. I am hoping when i get to the top dose that the attacks will start to ease as when i started taking this medication they were an lot worst than they are now. I can honestly say the medication has halved the amount of attacks i get in a day so it must be working. Also the oxygen plays a huge part as it half the length of time an attack can last and sometimes is a life line when it is needed.

The weather is set to improve over the rest of the week and weekend so i may even get another fishing trip in before the bad weather decides to pay us a visit. I have been watching the weather closely due to my condition and the fact that the weather is one of my main triggers for the attacks. They are forecasting a sudden change in the weather and wind direction saying that it will be coming from the east bringing not only very cold weather but also sleet and snow. They are calling it “The Beast from the East”.

I am praying it doesn’t snow this year as it will cause me agony and i will get another period of non stop attacks and pain. Fingers crossed we only get mild weather and the beast stays away from us. All i can do at the moment is the usual thing of staying warm and staying out of the cold wind. I will have to try and time things for when i don’t have the attacks and try and do my shopping and cleaning in between the pain periods. It can be done!

The beast is attacking!

I haven’t updated my blog just lately as i have just been way to ill to do it. i couldn’t sit long enough at the computer before another attack would start and i couldn’t see the screen or even concentrate enough to write it. Even today i am still in agony and have an attack building as i am sitting writing this.

The last couple of days have been pure hell. I have never had so many attacks in such a short period. \it seems like as soon as one stops another is building in the background ready to pounce as soon as you get rid of the one before. The level of pain varies from attack to attack some are small but many of them are massive attacks and so painful not only does it weaken you but it also scares you half to death. I can only assume it is due to the weather change as no matter what i do to try an avoid the attacks from coming or aggravate my condition i just keep on getting attack after attack.

Not only am i being woken up at 2am or 3am with a big attack but the attacks keep on going through out the day and by the end i am so shattered i just tend to pass out on the bed. My face constantly feels sore and my neck is in bits. No matter what i do if i move a tiny bit i get shooting sharp pain from the point of movement up the spine or down it if the case may be. The pain over the top of my head is so sharp all the time its like someone is cutting through it and also trying to pry my eye out with something hot as i get a burning pain behind the eye socket.

I must be averaging over 10 attacks per day at the moment witch is the worst i have been for a long while. The swelling on my head is right up and i can now feel it all the way along the left side of my head and down the back into the neck. Something is seriously aggravating my condition and i cant for the life of me think what it could be. i am taking so much care of my health at the moment the only other step i can take is to move into the hospital itself. I can only think it is the stupid weather causing it and just can’t believe how much pain the human body can endure in a 24 hour period.

All i can do for now is keep warm as usual and pray to god i get a break from it all soon as it is really draining my energy fast. I find myself out of breath more and unable to walk as far as the supermarket with out stopping to take five. At my age that is absolutely ridiculous and no way i should suddenly feel so unfit. I know it will pass as soon as my head starts to ease again but how long its going to take before i get my break i just don’t know. lets hope the year will continue and its not going to be like this for the rest of 2013 as i don’t think i will be able to take it. I have got to get to grips with this condition and find a way of getting the attacks to reduce or even better go to sleep again. I have got to beat this thing as there is now way i will let it beat me!

Happy New Year… 2013 will be GREAT!

Yesterday i spent the day nursing my head as from early morning i just seemed to get attack after attack and no matter what i tried i couldn’t stop them from coming. I am sure it was my neck that was causing the attacks to build all the time as it was so painful there wasn’t a pain killer on the market that would have eased it. I had planned on visiting my aunt with my mum and step father but because my head was so bad i couldn’t go. It just messed up all my New Year celebrations and i ended up spending the day alone in the flat and even went to be early just because i was so fed up of being in pain all the time.

My head is a little better this morning but still sore, I have had a couple of attacks but no really massive ones yet but i am sure they will come later. I don’t care what happens today as i am off out fishing at my local lake. I have been putting it off because of the weather and my head playing up all the time but not this time. I intend on starting the year as i mean to go on and there is no chance that i will let this condition dictate to me and control my life. The weather has actually improved slightly and we are forecast a clear days with a bit of cloud later in the afternoon so that is why i am off fishing. I will leave around 7.30 am to get down the lake by 8-8.15 as that is when the sun is set to rise. Hopefully i will catch a few fish today and start the year as i mean to go on.

Well its the beginning of 2013 and lets hope i can make it a year to remember. This year i will get some answers as to what causes these attacks all the time and maybe even find the solution once and for all. My mum has planned a holiday in April down in Cornwall so that is going to be a nice break to look forward to and its also a chance of fishing some brilliant fishing spots while i am down there. Also we se a start to “Fishing Adventures Wales” as its is my first fishing trip of the year today and will get a chance to update my web sites and get them started properly. My first fishing match is this month towards the end so that is another thing to look forward to. I intend on entering quite a few competitions but only the small club ones for this year so i can get a lot of practice ready for 2014 and maybe even enter the big competitions when i feel i am ready. i have been made a member of the Llanrumney Angling Club, my local club, so that has made me really happy and i now have a group of people i can go fishing with.

Well 2013 looks like its going to be a good year for me so far so i am chuffed and actually woken up with a smile on my face despite the constant pain in the side of my head. There are so many things i am looking forward to but after the last 10 years of struggling and feeling so low you couldn’t imagine, i have become impatient and want all these things to start happening now. They will when it is time i just have to learn to be calm and take things as they come. Let me take this opportunity to thank all my readers and wish them all a Happy New year and i hope 2013 turns out to be a great year for you too.