The beast is here to stay! God help me please!

After the last couple of days i decided to have an early night to try and catch up with the sleep that i have lost but unfortunately it didn’t last very long. I was woken up at 11pm last night with a massive attack, again one of the strongest i have had so far, scaring me half to death. Again i actually thought something bad was going to happen as i had trouble breathing and seeing out of both of my eyes. The pain was so bad not only did it cause my face to droop on the left side but also made my eyes swell shut so i could hardly see what i was doing. I rushed to take my injection but it had no effect, the attack was to advanced for it to do any good. I jumped onto my oxygen but again all it did was help with the breathing (thank god) but it didn’t help with the amount of pain i was getting.

After the attack was finished i felt like i had been hit by a car or something i was so bad. The whole of the left side of my face remained tender to the touch and if i moved my neck it would just start of the pain again. I tried to get some more rest but my efforts were wasted as i had another attack around 20 minuets after the first one had stopped. It was pointless taking another injection as i would need to save it for early hours in the morning. I just had a feeling it was going to be a bad night. Again the attack was so strong it effected my sight, my speech and my balance as i kept falling over. I crawled to my electric fire and turned it on full to try the heat trick that i sometimes use to help reduce the pain. It started to work at first and i was so grateful for the relief but it didn't last long. About 10 minuets after the attack started and i managed to control it another one began. i just didn't know what i was going to do, this was just beyond a joke, how much more can i take.

I have continued to have attack after attack all night and all morning. I managed to get around 2 hours sleep maximum and i feel so tired and drained. I cant see properly out of my left eye as the vision at the moment is completely blurry and all i can see is the out line of objects and shadows. Thank god i can see out of my right eye or i would be in real trouble. My neck is so painful i just cant move it at the moment and have wrapped a towel around it to keep it warm and to stop it from any unwanted movement that will cause me even more attacks. my back is also bad and every time i walk or try and move to get comfortable i get shooting pains right up to the base of my neck. As i walked to the toilet it was like my feet were glued to the floor and took a lot of effort to move them, this is the worst i have been for a long while. The attacks are still on going and i have such strong shadows it keeps setting of the head and its just more and more pain, how much more can one person take.

Even typing this blog is causing me pain sat at the computer. It is like someone is cutting at the base of my back and the pain keeps shooting up over the top of the head. It won’t be long before another one starts. The eye feels like someone is driving a spike right through out the back of my head. Why doe’s it do this, I just don’t understand. I really cant wait for my scan and to get some results to try and find out what is going on. I am sure something is causing the attacks to be more regular and more painful than before. It’s times like this i actually wonder whether the medication is actually doing anything, but in reality i know it is as mostly it has reduced the amount of attacks. It just seems as the winter has come and the weather has dropped in temperature so much it is causing me to have a very bad period of attacks.

At the moment the shadow feeling (pressure) is very strong and i am still experiencing pain every couple of minuets so i know this bout of attacks is far from over. I just don’t know if i have the strength anymore, I am so drained i can’t take much more of this. Why should anyone have to suffer this amount of pain and this level of pain it is just beyond my understanding. Not knowing what is going on and getting the pain and attacks all the time is scaring me and i sometimes wonder if this will be my last attack and something bad will happen such as heart attack or worst even a stroke. I can’t see the body coping for very long with this amount of pain all the time. A couple of occasions i have had it so strong the body has given up on me and i have blacked out for a few seconds or maybe longer i just don’t know. When i come around all i get is my head throbbing like i have a hangover from hell, the eye remains sore and my face drooped and i get a horrible metallic taste in the mouth and a funny smell sometimes. i am assuming this is the same feeling as being knocked out or something along those lines. So much is unknown at the moment so all i can do is pray and hope it doesn’t get as bad as i feel it will.

Here we go again, i have to finish now because the pain is building yet again so i have to go and try and ease it with the fire and heat. It looks like the beast is here to stay for a while, God Help me!

Getting tired of the early morning calls.

Another couple of early morning wake up calls to notch up! God i am getting so tired of these attacks all the time. Again at 3.30 am then at 5 and once again at 6.30.I don’t seem to get any small attacks anymore only massive ones. These are the worst attacks i have experienced. At least last year i would get a few smaller attacks so it wasn’t always screaming agony but just lately all i seem to get is the big ones, even though there are less of them, and the strength of the attacks are so bad that it takes me a whole day just to recover from them. Now i am sure my body is getting used to the medication as they seem to be getting worst in the last 2 weeks, when we decided to freeze the amount of medication due to me having bad depression mood swings (bi-polar playing up). I have made the appointment to see the doctor to ask her to continue the increase and get my medication sorted but its not for another week so i have to put up with these attacks for a little while longer.

I have spent the last week trying to catch up on house work and also sort all my fishing gear out ready for the new year and the start of my tour of the Welsh lakes and rivers. You would think being stuck in all day i would have loads done and my flat should be as sterile as a hospital all the cleaning i “could” be doing but do you think my head will give me a break so i can get on with these things, NO! Constantly i am in pain no matter what i do. I try to do the house work then the back and the neck plays up, i try to take things easy and end up in pain from sitting to long and then i can’t stay still. I can’t win! I take Naproxen pain killers that help with the swelling in the neck but are absolutely useless for anything else. They don’t ease or stop the pain and most of the time make my stomach do summersaults as they seem to have a bad effect on me especially if i haven’t eaten anything. I cant take normal pain killers as they only seem to last for a short while and the last time i started taking pain killers i ended up going down the road of a “drug addict” as i became addicted to the different pain killers especially opiates and codeine. I have now managed to push through that barrier and no longer rely on pain killers or any drug to control the pain, i just have to ride it or use the injections and oxygen to abort the attacks.

I have to be honest as i feel so much better now i no longer run each morning searching for pain relief and my drug fix, wondering where the money will come from to keep me pain free all the time. Constantly wheeling and dealing just to earn some money to be able to purchase my drugs and tablets. I really understand where some of the drug addicts are coming from, when they are constantly searching for the drug in order to self medicate and get the help and relief they so drastically need. I don’t understand the ones that are constantly searching to get high or “chase the buzz” as we say, these kind of drug addicts will never get the help they need as they don’t really want to stop taking the drug as they would prefer to be high than live a normal life. In that respect i am VERY lucky as i could have gone down that road and ended up as bad as them or if not worst, dead! At least i get my highs out of being pain free and normal and also my fishing keeps my occupied and gives me something to look forward to.

It has been ages since i last felt confident or looked forward to something, i am grateful to my mother and step farther for re-affirming my love for fishing and starting my hobby up once again. It has been like a new light in my life and given me some direction and focus. I am actually looking forwards to the different places i may fish in the next few years and the fish i may or may not catch. Even though i have to put up with these attacks all the time i am sure with a little help and the medication being the correct level i will be able to manage the condition. I have a gazebo brolly (a special fishing umbrella with sides) so when out fishing i can crawl in out of the wind and if i have an attack i can hide away in there for an hour and then continue fishing when it has stopped. I have also decided to buy myself a fishing bivi, like a small one or two man tent that is specifically designed so you can stay out of the weather and still watch your fishing rods so i will be able to stay in there if i get attacks and will be able to take my oxygen with me if i need it or decided to have a long fishing session over a weekend.

I have some strong shadows again but hopefully these will pass as it is the after effect of the attacks i have had this morning. The weather, although still cold, has been forecast to be clear with a little sunshine so i am hoping it has a positive effect on my head and i get my pain free days as i so need them right now. My body just feels drained after the last 2 weeks and i am running out of strength fast. Even when i try and lay down to get rest the back and neck starts to play up so i can;t even recharge my batteries that way. I am so tempted to go out and do some winter fishing but i know with the weather the way it is and the time of year i will just be in pain or will end up paying for it the next day with massive attacks so i think i will pass on that for now. Let’s just hope i get a pain free day soon!

Another couple of days “Battling the Beast”

Unfortunately the last couple of days have been really bad. So far the start to this winter has been a lot more painful than i was anticipating. Although i haven’t had as many attacks as i normally have the strength of the attacks have been really bad. I used to get around 3 or 4 small attacks during a day and anything from 2 to 4 big attacks. Now i don't get any of the smaller attacks and still anywhere from 2 to 4  big attacks and i have had days where i have had 8 massive attacks but that isn't a regular thing thank god.  I don’t get attacks every day they seem to be in bouts of 3 or 4 days and then i get one or two days rest in between these attacks. Last year i did have periods where i would go six weeks with out a break and the lack of sleep was unbearable as i was falling asleep on my feet. I am praying to god that it doesn't get that bad again but i have a feeling after this start it is going to be hell. No wonder they nick name this condition “The Beast”, as only something so evil would want you to suffer as much as i do everyday.

Again i was woken by “the beast” at 3am with a wake up call from hell. I thought some thing was in my eye burning its way through to the back of my head it was so strong, and that was as soon as i opened my eyes. I am sure i was even dreaming about the pain but i cant be sure as i soon forgot what i was dreaming about within seconds of feeling the actual pain shoot over the top of the left hand side of my head. I crawled into the living room, it was that bad i couldn’t stand properly as the pain that was down the spine was just as strong as the pain in the head. I know it is definitely a nerve that is causing the problems as it seems to effect al the nerves down the spine when it gets really bad. I had to take my injection this time as it was building to be a very strong attack. I managed to get into my “recovery chair” as i call it. An arm chair in the living room with some soft cushions and my oxygen bottle and mask all set up ready for me to use and the telephone next to it in case of emergencies. i placed the oxygen mask round my head switched on the oxygen and started to breathe in and praying to god for the pain to stop.

The oxygen works and helps to reduce the amount of time the attacks last but not always. It isn’t every time you can use the oxygen as sometimes the pain is so bad you can’t sit still and other times it is so bad you can’t move and get to it. When you do manage to use it, it doesn’t stop the attacks but does have an effect on the time. It makes me wonder if , when getting the attacks, oxygen isn’t starved from the brain? maybe that’s why it helps reduce the time. All i know is that it helps and it also gives me some comfort knowing i have it there if i need it, a little bit of security. It managed to help reduce my big attack this morning as it only lasted a further 20 minuets after i sat in the chair and started to use it so i am thankful of that. It has left me feeling like i have been hit round the side of the head with something and my eye feels swollen and sore. My neck is very painful to move so i am trying to keep as still as is possible. The top of my head feels like it has been cut off and then crudely stuck back down again and the swelling on the left side, by the scar, is proud so i know i am going to have a few more of these attacks before the day is over,

I have my “brain” scan on Saturday the 1st December, a nice Christmas present, i will finally get some answers as to what is causing the swelling and hopefully also as to what is aggravating  my condition and causing the attacks to be so regular. i have finally got control of my bi-polar disorder (depression mood swings) and have stopped yo-yo’ing so i made the appointment to see the doctor just after my scan and will ask her to continue increasing the medication again. Let’s see if it really is working and it can stop these attacks from building. I am slowly coming to terms with the fact that i may have this condition for the rest of my life and that i will probably have to control it with strong medication al the time as well but i really have to get them to do something about my appetite and stomach. half the time i am not eating properly because i just don't feel hungry and the other half i don't eat as my stomach constantly feels sick from all the tablets and medication i take. I will have to ask the doctor for some supplements i think just to make sure i am getting the right nutrition i need as i am feeling weak all the time and i really need my strength the tackle these attacks all the time.

Well its another cold, wet, grey and miserable looking day outside! I can easily see why people suffer from depression so easily in the winter. Just a little bit of sunshine would be nice, just to make it a bit lighter and it wouldn’t be so bad. it is still very cold outside and i don't think it will get much warmer now as the winter is really about to begin. So far we have the worst rain in the last couple of days than what we have had in years with a floods and people loosing their homes and even their lives. The weather is set to become even colder after Christmas with a feeling i have that we will end up with a lot of snow in the new year so i best get prepared for a painful experience. I have been missing my fishing that much i was tempted to do a bit of winter fishing down at the local lake this weekend but after the last few days i have had and the fact that it isn’t going the get warmer now i think i will pass on that idea and stay home in the warmth. Looks like my next fishing trip wont be until the middle or end of march depending on how bad of a winter we get. I am off on holiday with my mother and step farther towards the end of April so at least i have that to look forwards to and it will even be a chance of a bit of fishing down Cornwall. It has been ages since i actually looked forwards to something and the first time i have had something positive to think about in a long time so it is keeping me focused at the moment.

Pain is a game you just can’t win!

I managed to stay relatively attack free for the remainder of yesterday. I did have a couple of attacks before lunch time but they seemed to ease away in the afternoon and the shadow eased off as well. I think it may haver had something to do with the fact i had the heating on full blast and also the electric fire so didn’t get any coldness around the head so i didn’t set of any more attacks. I hope this isn’t the only way of avoiding them as it could run costly having to keep the heating on full and the electric fire at the same time. I am lucky the electric fire is one of them halogen lamp ones that is supposed to be a lot cheaper than running a conventional fire. As far as the heating is concerned, I will have to choose my moments carefully as the prices of gas has just shot up so  and is becoming more and more expensive as each winter passes.

Last night was a bit restless even though i had the heating on. I could feel the pressure on the left side of my face and in turn it kept on waking me from my sleep each time i dropped off and became very annoying by late night. Eventually i managed to fall asleep but my rest was again disturbed by my head trying to build into an attack at 4am but turned out just to be the shadow playing up again and i managed to drift back of to sleep. I don’t have to rush out this morning to go and get my medication from the chemist as they have now put me on weekly take home medication so i don't have to face the freezing cold mornings and end up in agony as they always seem to irritate the head and set off some bad attacks..

I have just been watching the weather forecast and was shocked to see how many places have ended up flooded in England and Wales, i have to think myself lucky i am not in one of those areas as i don't know what i would have coped ?, no electricity, flooded homes and freezing cold. I really feel sorry for those who are effected, especially at this time of the year, so close to Christmas and a huge change in the weather making it colder each day.

Well its another cold day ahead of us and more bad weather forecast through out the whole day, mostly up north thank god. I am hoping that by keeping warm again today i can make sure i don't get any of the bad attacks i experienced over the weekend as they were some of the worst attacks i have had to date, trust me! i have had loads, so when i say they are bad, they are “REALLY” bad!

I know its cold and the weather is lousy but i have to admit i am missing fishing already. I am finding it hard to deal with the attacks when they are so regular and i am finding that filling my time up with things to keep me occupied isn't as easy as one would think. I can’t look at the computer screen for long periods as my eyes start to go all blurry and the head begins to ache, this is the same when i am watching TV. Its too cold to go out visiting people and family as by the time i get there the cold would have worked its way through my layers and i end up having attacks for a couple of hours after until i have warmed back up. If i am sat still for long periods the pain in the back begins to play up and that in turn aggravates the neck and ends up causing me serious pain and discomfort and will eventually set of one of the big attacks in the head. So no matter what i try and do i can’t win!

More attacks in one day than an entire month!

I am feeling a little lethargic today. Yesterday i must have had more attacks in one day than i have had in an entire month. My head would not stop hurting. After every attack my neck would continue experiencing pain and i would get this shooting pain up through the back into the neck and straight over the top of the head and ended behind my eye. The pain wouldn’t just shoot upwards it would travel both ways, to my eye and from behind my eye over the top of the head. Every time i moved i would either irritate the neck or my back and would end up in pain so i tried to stay as still as i could laying on the couch most of the day. Each time an attack would build i would get very strong shadows just before (pressure feeling) on the left side of my head usually at the top but also had it on the side on a couple of occasions last night.

Also due to the fact i am only allowed 2 injections to try and abort the attacks, yesterday turned into one of the most painful days of my life. I am taking things easy and very slowly today. I am trying not to move around too quickly and end up having more attacks. The attacks stopped around 4am this morning so i am hoping its the end of them for a while. My body feels like i have been run over by a bus. My back is hurting so much even typing on the keyboard feels painful as i have to lift my arms in order to type. My legs feel like they have turned to lead over night and my neck feels like there is a small ball stuck inside just under the base of the neck and it keeps causing very sharp pains shooting down my spine. I had a small attack around 7 am, but nothing that i would compare to last night.

I have been watching the weather closely as i know my attacks have something to do with it getting very cold and low pressure systems over the UK. These extreme weather conditions seem to effect the amount of attacks i have or how severe they can become. This makes me feel that it has something to do with pressure on the head. With the swelling around my scar as another indication of pressure as when i get the worst attacks, the swelling seems to become more prominent and you can feel it along the side of my head and feel where it goes into the head at the base of the neck.

I am just praying at the moment that i can keep the attacks from coming back today as i don't want a repeat of yesterdays attacks as i don’t think my body could take it again. I am still exhausted from all the attacks yesterday and i need more sleep as i didn't get much due to the attacks and the worry of them happening again. I tried to eat yesterday but with the amount of pain i kept on being sick and bringing up what i had just eaten so i gave up in the end. I tried a little soup late last night and that stayed down so lets hope i can eat something today. I am just getting over a nasty cold as well so i am wondering if that hasn’t made my condition worst as well. Maybe it is a mixture of a couple of things and that is why i am feeling so low, so run down and tired and the attacks are worst than ever. Some things has caused them to be more aggressive than normal, if there IS anyway of them being any more painful than they already are.

Early morning call from the beast!

Another 2am wake up call with a nasty attack that lasted just over an hour. Firstly i woke up feeling strange, like something had been sat on my head during the night. like a feeling of pressure pushing down on the left side of my face. There wasn’t any pain but i seemed to be awake for no reason. I decided to get up and go to the toilet and that’s where the attack started. As soon as i turned the bathroom light on there was a shooting pain from behind my eye straight over the top of my head. The attack had begun, the beast was back!

I ran into the living room trying to place my oxygen mask over my head  but the pain was so powerful i just lost my balance and ended up on the floor crawling towards my electric fire. I turned it on and placed the side of my face near it to get heat on the area i was getting the sharp pain.  I have used this trick to control the pain so many times i am sure it is getting used to it as normally when i do this it helps to reduce the pain as i cool the face down gradually. This time it didn’t seem to work. The pain continued to be strong and at one point i thought i was going to pass out!

It took around 40 minuets before the attack reached its peak and then as fast as it had started the beast was gone. I was dripping in sweat at the end of the attack and started to shiver as the cold started to hit me. So i changed my t-shirt and huddled up near the fire to get warm. it was about another 15 minuets before i recovered and decided to come on the computer and type up what had just happened. Its strange why i only get 3 or 4 days pain free and then the attacks begin again. I know why they are starting as i can feel the cold ring around the top of my head once again signalling some very cold weather.

I feel completely drained of all my energy and wide awake. I don't feel tired enough to go back to sleep but drained enough not to want to do anything. Its as if the body is still asleep but the mind is wide awake and active. All i can do for now is wrap up warm, as its a really cold start to the morning and sit and watch a bit of TV and just hope i can drop of back to sleep again. Doubtful but here’s hoping!

Pain free, lets hope its lasts longer than last time.

Clock up another pain free day! I didn’t get anymore attacks yesterday despite the weather being horrible and cold. Another cold start this morning woke me up again at 5am but at least i wasn’t woken by the head and the attacks i normally get. I do have a little bit of a shadow there but nothing that will make me worry about getting an attack today.

The weather is not looking great for the rest of the week and weekend. We have more rain forecast for later this evening and more floods on the horizon. I am shocked with the amount of rain we have had in the last few days it is like it is trying t catch up for all the days that we had rain free. there have been so many places shown on TV that are flooded and with out power so i just pray that this wet period will end soon as i have my head scan next weekend and i don't want anything to stop that from happening.

At least it will be dry today so i can at least get all my shopping done and stock up ready for a wet and miserable weekend ahead. I am hoping the cold weather doesn’t start to play havoc with my head again and start to set of these attacks again. Normally i only get 2 or 3 days pain free in between bouts of attacks so i a am hoping for a longer rest period this time. I know the medication is working so fingers crossed.

I have been waking up late just lately this is due to not being woken by the attacks as i normally am and with out having the pain i have been able to remain asleep and lay in for a couple of days but i just know as the weather will start to become even colder and we get Christmas out of the way i just know i will be in agony in the early mornings and late evenings. It seems that this is the time i am most vulnerable to the attacks and they always seem to happen when you are least expecting them to.

The trick with staying warm by wearing a woolly hat during the cold periods works only 50% of the time. I also find if i wear it for too long and i overheat i can also set of an attack so there are days that can become very frustrating as i don’t seem to be able to win when it comes to keeping the attacks at bay. At the moment i am attacks and pain free, lets hope it lasts!

I hate depression, thank god for a pain free period!

So far so good! I was expecting to be in agonising pain and have constant attacks when the cold winter months began but so far i have been very lucky. Medication seems to be keeping the small attacks at bay and when the larger ones do decide to pay me a visit, if i can’t abort them with the injection, they tend to last a shorter period of time compared to what they used to be like. I still have massive ones and i still get the long lasting attacks but not as often as they were.

I have just booked another appointment with my doctor to ask that they now continue with the increase in the amount of medication i am taking as my depression has now stabilised and i have stopped yo-yoing. It is very difficult to know whether it is the medication causing it or it is just my bi-polar disorder playing up again. Ever since i came back to the UK in the millennium my bi-polar has been causing me major problems. I have had more periods being down and depressed than i have had high periods. The low periods can get so bad that you feel suicidal and can’t see anything positive in your life. Having the attacks all the time and shutting myself away has also had its effect on me and i find myself feeling alone all the time and not wanting to be anywhere where there are crowds of people. Even visiting friends is off the menu as you just can’t bring yourself into going out the front door and end up turning around and staying home instead.

You would think after suffering such a condition all your life you would be able to control it by now, but even with all the little tricks i have learnt over the years and making sure i stick to routines i still find myself overwhelmed when the low periods start and i end up just falling apart and find myself not coping. I have to admit depression is one illness that no one really understands and i wonder if anything can really be done to get rid of it. I find the medication i take is the only thing that brings me back to a normal level but even that isn’t enough when i get my worst days. For now i am just thankful of the medication and hope these depressed days will soon solve themselves as i get the medication right for dealing with the CH and attacks.

At least today i have seemed to have settled. I don’t have any sign of a shadow and apart from an attack earlier this morning when walking over to my mothers, i am sure the wind set it off as it was blowing straight into my left eye and was quite cold, I haven’t really had anymore signs of attacks building so i am hoping it could be the start of another pain free period and i will get a couple of days where i can catch up with things i have just put off because i have been too bad to deal with them.

Coffee calms the beast….why?

When i first started this blog i didn't have a clue what i would be writing about or how i would write it but it’s not until you look back you realise how easily it builds up. At least if i can make one person understand what this condition is like and that it actually exists then i have done what i set out to do. I have been very lucky the last few days with the change in weather being so drastic, i haven't had anywhere near the amount of attacks i normally get this time of year and am so convinced now the medication has started to work. When you talk about your condition with someone it some times gets annoying when they say they know what you are going through, they have suffered with migraines or headaches but in reality they haven’t a clue and can’t even imagine 10% of the amount of pain we have to put up with. The only way of describing the pain is it is the same level of pain you get before you die except in our case we have to live with it over and over again.

I am so thankful of the injection i have as they are the only thing that will actually stop one of these attacks otherwise each one can last between 1 and 2 hours depending on the strength of the attack. The are other days where you get smaller ones constantly through the day and can end up with anything between 8 and 15 attacks. There is always a shadow proceeding the bigger of the attacks, like a feeling of pressure constantly pushing on a nerve in the head causing you constant discomfort and pain. Then there is the neck, like someone has put grit between your joints as they grind away. A feeling of like there is a golf ball stuck in the bottom of you neck that keeps causing you pain. The shooting pains down your back each time you move and it is almost impossible to sit still for periods of time. The agony of actually walking as shooting pains from down your back and your legs each time you take a step and the feeling like your legs are suddenly made of lead.

So far i have been lucky with the medication as the first drug the specialist recommended seems to have taken affect. this gives me reassurance that the doctors know what they are talking about as the medication and treatment they have prescribed me is actually working. They have reduced the amount of attacks i get in a day but i still get the bigger attacks and when they do come they always seems as they are getting worst, if there was any possible way of being any worst than they are, and sometimes even the injections can’t stop the strongest ones.

Today is another wet and miserable day and i know its going to be a painful one as i have been getting strong shadows all morning. The shadow even woke me up this morning at around 5am but i have been able to keep the attacks away just by drinking coffee witch seems to calm the shadow. I am just hoping i can keep it from building for the rest of the day.

Hot and Cold flushes..

Yesterday was a strange day when it comes to my attacks and illness. I continued the day with no attacks and very little shadows until just after lunch. It was then i started to feel very rough. I started to have hot and cold sweats and the neck started to hurt and again feel like there was a ball stuck in my neck. Every time i turned my head it seemed to send shooting pains from the neck right into the front of my eye. What was causing it i didn’t have a clue.

It was then late afternoon, early evening that i started to get a blocked nose and sore throat. At first i thought it was due to my head about to play up as normally i get a blocked nose when the bad attacks appear but this wasn’t the case. Sweat continued to poor off me and i began to get a light head and start feeling sick. I was coming down with a nasty cold or the flu.

Every time i tried to relax i would begin yawning and that would pull the muscle in my neck and would end up starting off a head attack. Some of the attacks i had yesterday have to be described as some of the worst i have had to date. There was even a point last night i would have sworn i was going to die and was even praying to god to finish it quick so i didn’t have to suffer any long than was needed. I have had many attacks over the last 10 years and have had some that are so strong you even pass out with them. Last night was different. I think it was due to a mixture of having a bad cold and a bad head and they were irritating each other causing me serous pain and discomfort.

So far today i have been lucky. Last night i wrapped up in bed with the heating on full blast and the electric fire on also. Anyone who came into my flat would have sworn i had started using it as a sauna it was so hot. I think this has helped as i must have sweated out most of the cold and i don't feel so bad today. I am still getting the hot and cold flushes and a sore throat but nothing i cant handle at the moment and thankfully the head is behaving itself so fingers crossed it will remain like this for the rest of the day and i can kick this cold into touch.

Pain During the Winter Months..

Even though the weather has become freezing cold, especially during the mornings, i didn’t get any attacks build yesterday. I did have a bit of a shadow but it didn’t build into a painful attack like it normally does. I did however get woken up again at 3am this morning with a small attack that i assume was caused by the cold getting to the top of my head again. As soon as i put on my woolly hat it stopped and i managed to get back to sleep. Normally once you are awake and the pain has begun there is no way on earth you can get back to sleep as it just keeps causing your neck and back to ache and the little shooting pains over the head is enough to drive you insane, I was very lucky this morning as i didn’t get any of these and i managed to fall back to sleep until 8.30 this morning.

I now know for sure that the medication that i am on is working and has caused a reduction in the amount of attacks i get and the severity of the attacks. Normally this time of year is the worst for me and there is no way i could go a day with out having a major attack. Every time the cold used to get to my head it would set of a chain of attacks that would last a couple of days and would take me ages to recover from them. This year i have seen a huge difference in my attacks and the way they build. I am just hoping they continue to be suppressed and eventually they will go into remission completely and i wont have to put up with them all the time.

It’s not long now and i will have the brain scan i have been waiting for, for so long, and finally get the answers that i have been seeking. I just want to put my own mind at rest with regards to the swelling that appears on the left side of the head on the scar where my head was split open like a watermelon. I want to make sure that there isn’t something there that is causing these attacks to appear or develop. If i find that there is “nothing” there and the attacks are a normal part of this condition and the only way to deal with them is through medication for the rest of my life i will be happy. At least by having the scan i can rule out anything that could possibly cause more problems or even death.

Well we are now into the winter months and the weather will now get colder and colder as the months draw in, especially January, this time of year is normally the coldest and for me the worst as the cold not only attacks my head but also my joints and any where on my body i have had damage like a fracture or break and makes it very painful when moving these joints. I am just hoping that by staying warm and taking care to wrap up when going out anywhere will be enough to stop these attacks from building.

Let’s hope it lasts longer this time…

After the last few mornings being icy cold when i wake up i decided last night to actually wear my woolly hat to bed. I know it sounds crazy but it actually worked. Now even when i have a good night i still find myself being woken at around 2am or 3am due to the temperature dropping in the early hours and this irritates my head and sometimes causes an attack to appear. Last night and this morning i didn’t wake up once. I wasn’t disturbed by the cold like normal and managed to sleep in till around 8am this morning, I feel great now my batteries are re-charged again.

I am convinced more than ever about the cold being a main trigger to my attacks and after last night i am now sure of it. I have also found that coffee helps with the shadow, the feeling of pressure i seem to get before the attack builds. It must be the caffeine that's helping to keep the shadow away. I have read on some support web sites that these energy drinks you can get can also help with the shadow feeling and help avoid attacks. I am not sure how good they are but it is something else that i can try when i get a bad period.

Well fishing is over for this year as it is now way too cold for me to be going out and as i found out last time i went, the wind will cause me big problems and bring on some huge attacks if i am not careful so i think its is advisable to wait now until March before i plan any more fishing trips. The trick is to find things to occupy my time so i am not worrying about my condition 24/7. Now that i have replaced my keyboard i can do some more work on my web sites but this is only a temporary stop gap just to occupy my time. I think i will have to try and start a new hobby,something i can do from home.. but what?

I am happy to report that this weekend has been relatively pain free apart from a small attack yesterday that seemed to just disappear just as fast as it was building, and didn’t really cause me any problems like it normally does. I didn’t have ay other attacks during the day. I did have a strong pressure feeling again on the left hand side of the head but that seemed to have vanished by this morning. The weather today is VERY cold outside and we will be lucky if it gets any higher than 5 degrees, also the wind is light so i should be ok when i walk over my mums to join them for dinner later. Fingers crossed this pain free period lasts longer than the last one.

Blog update–November 2012

My keyboard decided to give up the ghost the other day so i have had a while off the computer. i think it may have been a good idea to give my eyes a rest and not use this computer all day every day. I am sure it is having an effect on my eyesight. It is either the computer screen or my medication, but every now and again my eyes go blurred and i cant read the writing properly. I decided to go out and buy a pair of reading glasses, only the very weak ones 0.005 or 1 x (times) in strength, and they seem to work when my eyes do go bad. I also have to face the fact that it could also just be my age catching up with me as i am almost 40.

Well my attacks have continued even though we are using the medication. I think its about time for another increase as that maybe is what is needed. I am sure the body gets used to the medication and starts to become resistant against any foreign chemical that has been introduced. If this is the case no matter what i do the pain attacks will eventually come back. I have my appointment for the brain scan on the 1st December and i can’t wait for this to happen as i am convinced there is something on the side of my head where the scar is that is causing it to swell and in turn causing the attacks to be more regular than is normal for this condition. We’ll have to wait and see what the outcome brings.

At the moment, as i am typing this update, i am slowly getting the feeling of pressure building on the left side of my head so i can actually feel an attack coming on. The shadow feeling is very strong today so i know i am in for some big attacks. It all depends if the precautions i take and staying warm will work and keep the attacks from building. Sometimes it doesn’t matter what you do the attack will build and the attack will being. That’s the point you start praying to god.

I have now been suffering this condition for 10 years plus. 6 of the years i was completely miss diagnosed and the rest seem to have flown by. The last 2 years have been the worst years of my life, having to constantly battle the beast on a daily basis instead of it being just once in a while. I am impressed with the amount of pain the human body can endure but i have to admit my strength is failing me and as time goes on i find myself with less and less energy each day. The winter months are the worst as they seem to be the main cause of the attacks being so regular and then you get the summer months that are just as frustrating as due to it being warmer you don’t seem to get the warnings that an attack is coming as you seem to have days where you are fine and then suddenly the attacks appear from no where.

My moods have been all over the place as i have been dealing with this condition and coming to terms with the fact that i may suffer for the rest of my life. It also has been playing havoc with my bi-polar disorder and i have found myself yo-yoing when it comes to my moods. One minuet i am fine and can take on the world the next minuet its the end of the world and then i am fine again. I also found myself crying uncontrollably and i haven’t done that or been that bad for years. Luckily the moods have now started to settle and i think are under control again. Lets hope they stay like that. It is bad enough having to deal with the illnesses i have got, having mood swings regular and always feeling low and helpless. These moods don’t last as long as they used to but they get you down all the time and can become annoying when trying to do the most simplest of tasks.

Well that brings my blog up to date and i now have to update my other web sites as i haven’t been able to after breaking my keyboard. At least i am back up and running and still pain free at the moment and the shadow is starting to ease away. Fingers crossed i may even get a pain free weekend.

Pain Free but will its Last?

Well at least i managed to stay pain free yesterday as we decided to go fishing up at Peterstone Lakes.The weather had warmed up compared to previous weeks, so i was lucky that the cold wasn’t blowing directly at me as i had my gazebo brolly with me and could hide away out of the wind. My mother, on the other had, was sat directly in the direction the wind was blowing and had to give up half way through the day as the cold had gotten to the joints and started the painful aches.

We still had a great day out ad my mother and step farther managed to catch themselves a few small fish where as i didn’t manage to catch any in the time that we had. I have decided to get another day in fishing today down at my local lake but due to it being foggy and overcast i will have to make sure i do wrap up very well as the damp will eventually find its way in if i don’t.

So far i haven’t had any attacks from yesterdays trip so i am happy the coldness hasn’t started of a chain reaction with my head. There are no shadows at the moment and i feel pretty positive this morning so i am hoping the day remains pain free. I will take my injections with me just in case and a flask of hot coffee to make sure i keep my body temperature up and this should ensure that i don’t get any painful attacks today.

I am now looking forwards to my brain scan scheduled on the 1st December as finally i will get some answers to questions i have had for a few years with regards to the swelling on the left side of my head. I am still convinced there is something that has caused my condition to accelerate. i feel like there is something that is causing all this swelling and i really want to make sure there is nothing there that can cause me problems in the years to come.

Only a short blog today as i am in the middle of getting my tackle ready to leave. It will be a late start today as i have to go and get my medication from the chemist at 9.30 before i do anything else. Other wise i will be in a world of trouble and end up in agonizing pain. Finger crossed i continue pain free today and i also manage to catch me a nice big fish.

Oh what a Night!

Boy did i have a few bad attacks yesterday, It wasn’t only in the morning but also late evening when they decided to play up again and i had some of the worst attacks i remember. It wasn’t helped wit the fact that i had taken my injections earlier in the day so i couldn’t even help when they came. All i could do was massage my head and stay on my oxygen until the pain eased enough for me to relax. The pain was so strong yesterday it has left me with a constant sore face. Any area on the left side of my head is extremely tender and if i try and touch my face with my fingernail it makes it feel really sharp.

I don't know how long the soreness will last i am just praying it doesn’t set off to many attacks today. I had an early morning wake up call at 4am but luckily it was only the cold that woke me and the head wasn’t building an attack. I went straight back to bed and thankfully fell asleep until 7am this morning when i was woken by my alarm. The head is shadowing strong but that is only to be expected as the cold weather has dropped in temperature quiet a bit and that in turn has started a period of attacks. I get like this every winter so to be honest it doesn’t really surprise me.  I was just hoping that the medication would help a little when it came to this time of year.

I know the medication has done something as i haven’t been having half as many attacks as i normally do and i think yesterday was probably only as bad as it was because of me going fishing on Sunday and spending the whole day out in the cold weather. We will have to see if this happens again on my next trip out some time this week. If id does then i will really have to consider my options and ban my self from fishing in the winter months witch is something i really didn't want to do but may be forced into doing it.

The beast is waiting to pounce, God help me!

Yesterday i had a brilliant day fishing with my step farther. The weather has been freezing all week and the one day we chose to go fishing turned out to be the sunniest day of the entire week. The start was cold but it soon warmed up as we got into it. I was scared at first that it would bring on an attack so the first thing i did was set-up my gazebo umbrella so that if i did have an attack i cold disappear inside and take my injection. As the day progressed the sun decided to come out about lunch time and i was so warm i had to start stripping layers of clothing off, that i had worn just in case it was freezing, and ended up sat at the water side sweating buckets.

When i returned home after the fishing trip i was so tired i couldn’t be bothered doing anything i just sat down watched a movie and then decided, as i was nodding off during the movie, to retreat to my bed. I was hoping that as i was so knackered i would sleep right through. Unfortunately the cold weather decided to return and give me a rude wake up call at 3am.

At first i thought it was the shadow just playing up and tried to force myself to ignore it and stay wrapped up in bed but it wasn’t the case. Usually i would rush and take my injection when the onset of an attack is building in order to catch it in time so it wont progress into a full attack. Where i was thinking it was the shadow i decided not to do this and it ended up being the worst mistake i have made to date. The pain started behind the eye, it was like something had got into my eye at first, like a piece of grit or dust or something, but then the shooting pain over the head started and i had to jump out of bed and rush into the living room. I was wide awake by this point and my eye was streaming. I took my injection knowing this was going to build into a nasty attack as i could now feel it all over the left side of my face. The pain continued to build over the next few minuets and even started making me feel sick it was that strong. The injection kicked in after about 15 minuets but it didn't completely stop the attack, all it did was reduce the level of pain on the front of the head. The pain over the top of the head and into my neck continued and i was i absolute agony.

This attack continued for around an hour and by the time it was finished i felt as if i had been run over by a bus or something. I tried to get some rest but it was having none of it as at 6.30 this morning another one decided to come and start. I took my 2nd injection straight away as i could feel how big this one was going to be and thankfully it did stop the attack just as it was starting to build into pain that was unbearable. Again i could feel the cold ring around the top of my head so i know for sure it is the cold again that has triggered it.

I am going to have to make sure i wrap up very warm today as it seems to be hanging in the background just waiting to build again. I have very strong shadows this morning and my back is hurting like never before. There are shooting pains going from the top of my neck down the back right in the spine every time i move. It is so bad it makes sitting or lying very uncomfortable and annoying. I am dreading going up to get my meds this morning in this cold weather as i know it is just going to set off more attacks today i and i don’t have (not allowed more than 2) any more injections today so i have nothing to help me when the beast does decide to come and pay me another visit. I am praying to god that they will stay away but i know my own body and all the warning signs are there so god help me today!

Feeling more positive! Fishing Today!

Thankfully i didn’t get anymore large attacks yesterday evening or during the night. There was a couple of times where i thought i was going to have an attack as i was woken up suddenly but thank god it was just the shadow feeling and i eventually fell back to sleep. I decided on an early night last night as i decided i am going fishing today with my step-farther. The weather has warmed up enough for us to get in a couple more trips before we hang our tackle up for the year.

It was the best decision i made, getting an early night! I have woken today feeling great. No sign of a shadow and no sign of an attack building so fingers crossed it stays like this for the rest of today. I am a little excited about going fishing but that is only natural. I feel completely recharged and full of energy, lets see if i remain so positive after sitting out in the cold for most of the day.

The weather forecast is no rain but some low clouds during the day so it should be a little overcast, which is perfect fishing conditions if you ask me. I am just hoping that the wind doesn’t pick up and the temperature stays warmish as it is normally the cold air blowing against my face and head that starts off the attacks in the cold. I don’t think this will be that case today and i should have a relatively pain free day. I will make sure i take my gazebo brolly with me so in case i do have an attack i can just crawl in there out of the wind and take my injection if needs be.

Well i am not going to bore you with the same old moaning and groaning about my condition today as i feel in a more positive frame of mind and i am going to get myself ready for fishing as i am being picked up at 8am so that we can get an early start and a full days fishing in. I will update all my blogs later tonight after we see how the day progresses.

The Beast is waiting to pounce!

I managed to stay attack free for a few hours yesterday but had a strong shadow all through the day. I had this horrible sick feeling for most of the morning that i can only think was caused by the amount of medication i am taking. No matter what i tried i couldn’t shift it, if i drank or ate anything then the feeling would become stronger but i wasn’t actually physically sick. I am not sure what is worst, actually being sick or feeling it constantly? Sometimes i wonder if just getting it over and done with is the best way.

Anyway, it wasn’t until i decided to go shopping when the beast decided to catch up with me and the pain started to build in my head. I know it was due to the cold getting to it so i quickly turned and retreated back to my flat to get back into the warmth. As you can see i quickly took a picture with my mobile, just as the attack was beginning, and you can see where my face has quickly dropped and also started to swell.

As soon as i got back into the flat it was a case of, strip the jacket off as fast as is possible and take my injection, then switch the electric fire on and get my head close to it to get it warm as fast as is possible. This trick seems to help when the attack does reach its peak and instead of lasting 1 or 2 hours it helps to reduce the time to around half an hour or 45 minuets. Sometimes if you combine it with the oxygen it can also reduce it further to around 10 or 15 minuets but this doesn't always work.

Thankfully that was my last attack of the day and i didn't get anymore during the night either. Mind you i did have the heating on full blast all night, as i just wanted a good nights sleep, but doing that could become very expensive! I was then woken at 4.30am but i didn’t have a full attack i just seemed to have a strong shadow as if its just waiting in the back ground. Waiting for me to forget about it!….. and then it will attack. I have tried strong coffee as sometimes this helps to reduce the shadow feeling and i have made sure i have taken my medication but its having none of it. It’s just hanging there. Making itself known, every now and again it sends, what feels like, small electric shocks to different parts of the head along the left side. It also send shocks down the back in the spine and makes sitting very uncomfortable.

Well i am making sure i stay warm today so i don't get any big attacks that's for sure. If i can manage to stay relatively pain free today then i should be ok for tomorrows fishing trip. We have decided to get 1 or 2 more trips in before we hang up our tackle for the year as it will just be way too cold soon. The weather is being kind at the moment and is warming up slightly but this won’t last. At least this medication i am on is working as i am now having far less attacks than usual. I think i am lucky in that respect as i have read stories of other sufferers that have spent years and i do mean years, trying to find the right medication that works for them. I am just hoping my body doesn’t build up an immunity to the drug and i end up going down the same route. Ill have to cross that bridge if it happens.

Time to fight the beast again!

Thank god i didn't have anymore big attacks last night. Normally i get between 4 and 8 attacks during a day but yesterday i had 4 massive attacks and one small one and then it disappeared. The shadow feeling eased of by late evening and no more attacks came or tried to build while i was sleeping. The attacks don’t half take your energy away from you, after you have had an attack you feel like you have been in a gym for about 4 or 5 hours dong non stop exercise, that's how painful the nerves become, you end up aching all over.

If you look closely at the photograph i took for my Facebook profile you can see the left hand side of the face in drooping permanently . Everyone who sees me like this always seems to ask the same questions..”have you had a stroke?”

Its not always as bad as you see in the picture as the face only droops when i get the bad attacks. Just lately though, the face has been keeping the droopy look even days after the attack so it is a bit worrying but i am assured it is just because of the nerve that it is doing this. Each time i get an attack or the nerve lights up and i am in agonizing pain, it seems like it is making the face worst. I do get days when i look in the mirror and notice that its not as bad as it looks but the cold seems to have a bad effect on it and it keeps the droopy look for longer than usual.

I didn’t manage a lay in this morning as the cold, once again, has woken me up. It hasn’t brought on a large attack yet, thankfully, but i am getting some strong shadows this morning so i am sure i will get an attack before the morning is out. One thing i have noticed about the cold is that it makes any pain you feel 10 x stronger than normal. When walking to the bathroom during the night i stubbed my toe on the corner of the door, not being awake properly and not watching where i was going, i ended up rolling around on the bed like i had broken my foot it felt that painful. It was only worst because i was very cold last night and had cold feet as well  and it just seemed to amplify the pain.

Well it’s shopping day today so i am hoping to god that the attacks will stay away, or at least stay away long enough just for me to finish all the running around i have to do today. I hate it when i am like this as it makes me NOT want to go out anywhere, i normally hide away from everyone when i am like this, but today i have to make the effort if i keep giving in to the beast i will not get anywhere so it’s time to fight again!

What can i say.. “It’s back”!

I managed to get through yesterday with out having a massive attack until late in the evening! It was around 7pm when the first attack came back, an attack that i can only describe as “Massive”, it seems that after i get a break period the attacks come back stronger or feels that way. Again i rushed to use my injection but again it overpowered it and i had to ride out the attacks which lasted over an hour. All i could do was rock back and forth massaging my head praying for the pain to ease.

Then again this morning i was woken at 4am with the cold around the top of my head. The pain started as soon as i opened my eyes so i had to run into the living room and turn on the electric fire and placed my head near it to warm it up. As my head did warm up after a few minuets the pain then started to ease. So i placed my woolly hat on my head and went back to sleep. I was then woken again at 6.30 am with another massive attack. This attacks made all my eye swell up again and i looked like something out of the film the elephant man. These are the attacks that worry me the most. The pain reaches such levels that i have actually passed out before now. They also cause me to loose sight in the left eye and also cause a lot of swelling around my head and eye.

I have taken my daily medication and already had one injection this morning to counter act the bad attacks but they just seem to keep coming this morning. All i can do is try and stay as warm as is possible and ride the pain out when it comes. I don’t want to take another injection so early in the day as if i have any bad attacks tonight i won’t be able to abort them. My back is also killing me now so walking up the chemist later is going to be agony. I really hate it when i get days like this. i know its the cold that's causing it as i can feel the cold both on the top of my head and the side of my face. The cold is even causing my knee to hurt, this i assume is the onset of arthritis as i had an operation on the knees cartilage when i was younger.

Days like this make me feel so low normally so i am trying my hardest to stay focused and remain positive. Lets hope by keeping warm i am able to stop the onset of the attacks  and can get through this day with out too many nasty attacks appearing.

The “Beast” came a calling

So much for getting past 3 or 4 days pain free. Yesterday i was bent down cleaning one of my fishing rods just checking everything was ok when someone walked into the flat blocks and called my name as i stood up “crack” i hit my head on the corner of the railings. Now considering they are made of iron and quite pointed on the end i wasn't surprised to find a small cut on the right side of my head where i hit it. (not the side of my attacks) The blood was amazing! the amount that came from a small pin prick size hole was unbelievable. Also when i hit my head there was a huge gong like sound that came from the railings so it was quite funny as it “rang my bell” so to speak.

The only trouble was that later in the evening i ended up having a massive attack. I am not sure if hitting my head is what started them off but it couldn’t have done it any good that's for sure. The attacks didn’t stop there. Again at 1am and then again at 6.30 this morning. The beast wouldn’t stop coming back. It’s crazy as i have been pain free with no signs of it returning for the last 3 days and then its started again with out any warning signs. I would have at least expected the shadow to build before hand but this time it didn’t. I know the attacks early this morning were definitely set off by the cold as i had to run in the front room and sit with my head in front of the electric fire to warm it up and stop the attacks.

Now that i have warmed up a bit this morning i don’t seem to have any sign of the attacks returning. I know that that doesn’t mean i won’t have any attacks so i still have to be careful. Now the attacks are appearing with out warning which isn’t a good sign. At least before i was getting a warning sign it was coming so i could rush home or rush to get my medication before it started. We’ll as long as i keep wearing my woolly hat out in the cold it should keep it from causing any further attacks, i hope!

The only thing that really worries me at the moment is pain that i have been getting from the attacks that is in the back. It seems to shoot from the neck to the bottom of my spine. This pain causes me to walk like a “really old” person who’s limbs are about to give up. The pain i get in the front of my legs when i walk, after receiving the shooting pain in the back, is very sore and strange as you would expect any pain to be in the muscle, in the calf of the leg, but this is on the shin and upwards. Its like a pulling pain, very sharp like treading on needles. i only seem to get this after big attacks during the night before or the morning. Then when i walk up the chemist the pain kicks in and its almost impossible to walk, if you saw me you would probably laugh or think i was putting it on the way it makes me look is ridiculous.

Well the weather is forecast to be dry but cloudy today and the temperature is supposed to warm up slightly so i am hoping last nigh and this morning will be isolated attacks and i continue shadow and pain free. i still think the medication IS working as even though i have had a couple of bad attacks the smaller ones seem to have vanished and i am now getting a lot less during an attack period so fingers crossed it continues to improve.

Rain! Rain! Go away! Come back on a painful day!

BRRRRR its a cold start to the morning today! Wow, i woke up at 7am this morning and it felt like my head had been placed into an ice box i could feel the cold that strong on my face and head it actually started me shivering in bed. I managed to pull the covers over my head and go back to sleep for an hour. This is great as normally i am woken straight up and the pain starts but not today for some reason, lets hope its the medication.

I managed to stay in bed till 8.30am so i did manage a little lay in.  I have to get up at this time to get ready to go up the chemist at 9.30. I can’t wait till i change this to weekly so i don't have to walk up every morning as i risk the cold setting off an attack all the time. I don’t have any sign of a shadow and no sign of an attack building this morning so hopefully it will be another pain free day. This is the 3rd day in a row i haven’t had massive attacks or major pain so i am hoping it will last a bit longer than it normally does.

I decided to have an early night last night as i was feeling a little low and couldn’t concentrate on watching TV or even being on the computer. I kept feeling restless and was constantly looking for different things to do so i thought i would just crawl into bed and get some sleep. With it being bonfire night last night i thought at one point there was no way i would get any sleep with all the fireworks going off but i did. I think i stayed awake for about an hour after climbing into bed and that was it, lights out!

It’s not until you get these pain free days that you start to appreciate how much more you can do and how much better you feel when you haven’t got a bad head or pain all the time. i think its a day catching up on my house work as i have just let things go over the last week due to me feeling down and in pain so its about time i nipped it in the butt and just got on with it. The weather isn’t looking to promising as they forecast rain and cold winds for most of the day even though the sun is shining at the moment you can see the rain clouds in the distance so its definitely a day indoors.

Here’s hoping for a pain free day!

The pain stayed away after all yesterday and i managed to get another day where i was able to lay in in the morning. I didn’t wake up till 8.30 today and i feel really good for it! My batteries feel recharged and i feel a little more positive today. It does help that i wrapped up during the night as i can still feel the cold around my head all the time lately and normally it would set me off with large attacks but it hasn’t for some strange reason.(let’s hope its the medication).

It drives me insane sometimes, i wake up some days and i am in absolute agony when the cold starts to bite at my head and neck, but the last couple of days it hasn’t been doing it so i am praying this is a good sign and the winter won’t turn out as bad as i was expecting it to be. There is definitely a huge drop in the temperature compared to a couple of weeks ago so i can honestly say Winter is with us and has begun!

If i go out at all i will have to wrap up and make sure i am wearing my woolly hat to keep my head warm as this tends to stop the cold from setting off any big attacks. My normal routine includes me calling at the chemist each morning to collect certain medication that has to be monitored on a daily and weekly basis but with the winter now here it is becoming more and more difficult to walk up there and get my meds. So i have to arrange with the doctors to switch it to weekly so i don’t risk bringing on any attacks unnecessarily.

Its a strange day today, the sun is shining and the skies are clear but the weather is still bitter if you go outside. This is the worst weather as it fools you into thinking its warmer than it looks and you will be fine until you get out doors and then the cold starts to get to the head so you hurry back in out of the cold to warm up as quickly as is possible. This is the weather when you start to catch colds and flu.

If this cold weather continues then i will end up having an attack for sure today, i will try everything i can to avoid it happening but it usually starts towards the evening or late afternoon. The cold normally causes the shadow to build during the day and when it comes to the night time, the attacks begin. fingers crossed this is not the case an i get another pain free day!

Moods were all over the place, Now starting to settle!

After having the shadow for most of yesterday i was very surprised not to have a full blown attack. Normally when i get the shadow, as strong as it was yesterday, i end up having several big attacks but this time i was lucky and didn’t even get one. Either the medication is working or the fact that i have been drinking loads of coffee the last few days has helped in avoiding the massive attacks. I can’t say for sure what has stopped them from developing, all i know is they didn’t start and i am thankful for that.

I managed a nice lay in this morning till around 8.30am but was then woken with a small attack. Not as painful as the main attacks but enough to make my neck sore and my walking painful as i get shooting pains down the back into the bottom of my spine. Each time i take a step is like walking on thousands of needles. My normal pain killers added with around 20minuets of oxygen soon took care of that and am now feeling pain free. I can still feel the cold feeling around my head but not enough to irritate it so fingers crossed it stays like this for the remainder of the day. the shadow feeling has become so dull its hardly noticeable so i am hoping this is a sign of a pain free period as i could do with a couple of days just to recharge my batteries.

My depression has been all over the place recently and i have been yoyo-ing when it comes to my feelings. One minuet i can take on the world and fight anything and the next moment its the end of the world. As you can imagine this has completely messed up my feelings and i have been finding it hard to cope with everyday tasks that i would normally laugh at!  It is only the last couple of days this has started to improve so i am hoping i am coming to the end of a “down” period and things will start to look a little more positive.

Again i have been shutting myself away from the world, not going out due to fear of having attacks all the time. I even went shopping to Tesco’s which is only 10 minuets walk away from me but for some reason i started to panic and ran home just to be in the safety of my flat. Why i suddenly panicked i am not sure and can only assume its the depression causing it.

I need to find things to take my mind off my illness. The computer gives me some relief as i find things to do and type up information for my computer help web page, but not always am i in the mood or even capable of using the computer as i can’t concentrate or sit for a period of time when i am in a bad period with the depression i find it very hard.

Now that the cold weather is hear i have even stopped going fishing in fear of having too many attacks being brought on by the cold. I am thinking about doing some winter fishing as the only thing stopping me is “the cold & rain” so i am sure if my head is improving and i am not getting as many attacks as i normally do and my depression is settling , if i wrap up warm and stay out of the rain then i should be ok. I will just have to choose the days carefully and watch the weather.

Well i will have to wait to do some more fishing when i am a bit better off. I cant believe the prices of day tickets today! Between £6 and £10 depending on where you fish, God i remember when i was younger and it was only £2.50 for children and £3 for adults, wow what a change! Anyway i am starting to ramble on so lets hope my head continues to improve and the shadows stay away today and the attacks don’t appear. At least its a step in the right direction.

It’s not just Painful Torture it’s also Mental Torture

So much for having a lay in on a weekend! I didn’t have any big attacks yesterday even though the weather was dreadful, but early hours this morning saw a wake up call at 4am. A strange wake up call as well, i didn’t have an attack and couldn’t understand why i had suddenly woken up. I could then feel the pressure build on the side of my head and a feeling of a golf ball being stuck in my neck. These are both usually the sign of a massive attack about to happen so i rushed into the living room and sat with my oxygen mask at the ready and just as i was turning the oxygen on it started to ease away.

This was a weird feeling as normally i would be in screaming agony. The neck has remained a little sore and still feels like there is a lump. The head is still swollen around the scar and my eye is drooping but no big attack. Now this is the feeling that i call the shadow. I sat like this from around 4.30 this morning until 6.30 and then took my medication for the day. After around 30-45 minuets the pressure feeling has now decreased and is a dull felling in the background so i am now convinced that the medication is starting to work.

My neck is continuing to play up and every now and again i get a shooting pain over the head and also down the back, these are both signs that i will definitely have a big attack today if i don't take things easy. Again i think it is the weather that has brought this on as it looks like it rained heavy last night and early hours so there must have been a low pressure area, that mixed with the cold is a sure guarantee to set of my attacks.

At the moment the feeling is dull and in the background and the neck is bearable so i am praying it stays like this. Sometimes i wish it would just get the big attack over and done with instead of making me suffer for hours before. It’s not just painful torture it;s mental torture as well. When you are like this you can’t go out, you can’t rest or sleep, you can’t settle to watch t.v., you are constantly on edge waiting for the attack to be over and done with and praying the shadow feeling would just go away and then no attack will come. You shut yourself away because you don’t want anyone to see you with a droopy face and an eye streaming with water and your nose is blocked on the one side. You feel embarrassed!

Well let’s hope the weather is a little more kinder to us today and this horrible feeling will eventually go away. All i can do for the time being is make sure i stay warm, keep my head out of the cold and drink plenty of coffee as i have now found out that caffeine is great for getting rid of the shadow feeling. Let’s pray for a pain free day!

Let’s hope for a pain free day!

Hooray! I managed to sleep right through the night and even managed to lay in till  8am this morning! I did have a couple of small attacks last night but nothing i couldn’t handle (oh my god that sounds bad! Like i am getting so used to them they are becoming part of may daily routine) . We’ll at least today i don’t have any sign of an attack yet! I still have a bit of a sore neck from last night but i am hoping the pain killers will take care of than and my head should then settle.

The rain is pouring down outside and the sky’s are dark grey. Normally in this kind of weather i would be in agony, hiding away from people in my flat to frightened to go out in case of the massive attacks. I don’t feel like that today for some reason, maybe it’s because i have rested well and haven’t started having the pain. If that’s the case fingers crossed it stays like this for the rest of today.

I have to go and try and arrange an appointment to get my teeth sorted. It’s been nearly 4 years since the operation where they pulled out every tooth in my mouth apart from three and the bottom row at the front. Strange why they left the three but never mind. It was the most horrible experience of my life. I suppose that’s why i have been frightened to go back to any dentist. All i seem to keep remembering is waking up and not being able to breathe because my mouth was full of blood and then spitting chunks of clotted blood out of my mouth. I know it’s a bit graphic but the dreams i now have about it is traumatizing. After the operation to be told there was nothing wrong and there was no infection in the jaw after all. This was before my diagnosis of CH.

Now that i have traumatized myself again thinking about the operation i think i’ll wait till the rain stops and go and speak with the dentist and discuss if my medication will cause any complications. Oh God ! i couldn’t imagine having an attacks whilst he’s extracting a tooth!. I Don’t want to think about that so it’s time for a cuppa and a hasty exit. let’s just hope the remainder of the day is pain free!

Watching out for the triggers!

Firstly comes the neck, a sore feeling like you have pulled a muscle or twisted something but not constant pain like you would think. The uncomfortable feeling leaves you massaging your neck hoping it will go away but then follows the pulling pain, a sharp pain that starts behind your eye and feels like something is pulling from the front of your eye to the back of the head and in turn connects to the neck. this pain gradually increases over time and eventually ends up feeling like someone is trying to take your eye out with a spoon. Then there is the sharp pain that goes over the top of the head again joining the front of your head and face to the back of your head with pain. A level of pain that you can only describe as someone operating on you with no anaesthesia .

That's how i would describe the early morning wake up calls. It doesn’t always come on in stages but the pain is always the same. You can sometimes wake up and feel fine for around 5 to 10 minuets before anything starts to happen but as with all wake up calls you don't feel tired for some strange reason. Normally if i wake up in the morning naturally i feel shattered and it takers me a good 15-20 minuets to wake up properly, but the ones where i wake up due to the pain attacks coming just don’t seem to be the same, i always wake up immediately and there is never a sign of tiredness.I am wondering whether there is a chemical being released by the brain that causes these attacks that also wakes you up straight away, it is possible i suppose?

I am now 100% sure that the cold weather is one of MY main triggers for attacks to happen. Again this morning when i was rudely woken from my sleep once again at 4am this morning to deal with a stupid head attack that lasted only around 20 minuets and then again i couldn't go back to sleep afterwards so i have had to stay up all morning. Its really annoying when it keeps doing this to me but i know what it is, or i think i do! I can feel a cold band around my head when i wake, the cold band is only in the place where i get my attacks, just above the left eye. It is this coldness that sets of an attack every time i feel it. It may not be the main thing that is causing the attacks but it is definitely one of the contributors to my condition.

another thing i have noticed over time is that there are several types of attacks that you get when you suffer this condition and each attack can vary in size and length.

Stress attacks: These attacks are usually caused due to high levels of stress and can make your neck and shoulders feel gritty like you have grit stuck in you joints. These are the worst triggers along with cold attacks and can only be stopped with medication.

Heat Attack: This sometimes occurs when you wrap up to warm, over do exercise or generally get too hot during the day you can find that it irritates your head and then causes an attack. Not so common but still annoying.The attacks are less severe and can usually be dealt with using oxygen and pain killers.

Cold Attacks: Just like stress this is another of the main culprits that sets of your attacks. They are the most painful of all the attacks and can last hours in length. Just like stress attacks these have to be controlled by medication and injections. These are the most painful of all the attacks.

Strain Attacks: These attacks occur when you are trying to over do things. For example if you are trying to tidy you house and you are doing it too quickly with out taking a break. You end up straining yourself and this in turn will aggravate the head and bring on an attack. Again these attacks are less often and can usually be controlled using oxygen and tablets.

Light Attacks: Can also be caused by bright lights constantly being shined in your eyes. Light attacks are very similar to migraine attacks. Just like a migraine you may experience flashing before the onset of an attack or even tunnel vision or a small headache that proceeds the big attack, this is why CH has been confused with migraines for so many years. Again these type of attacks can be disabling you need medication and injections to control. The longest lasting of all the attacks and again extremely painful.

Noise Attacks: Just like normal “headaches”, if there is such a thing, these attacks can be set off by excessive noise and thumping sound that is experienced for a period of time. This in turn again causes your headaches to build and just as in stress headaches they will reach to extremely painful levels and can only be aborted by injections and/or oxygen and you have to find peace and quiet.

There are so many different reasons an attack is set off or why they are irritated to the extent that you are in constant suffering but above is a small list of the main reasons why MY attacks seem to happen. It wasn’t until i started doing this blog that i realised how many different triggers there could be for this condition, but what i do know is that education and knowledge is also a good weapon in defeating or controlling this condition. by understanding what can cause the condition to build we are able to avoid some of the main triggers thus making life a little easier to bear.