A Short break is better than a kick in the teeth..

I have managed to stay pain free until lunch time yesterday. Only 2 and a half days rest from the beast is better than none at all. One of these days i spent being so lazy just laying around on the bed watching TV drifting of to sleep and then waking when i want some food or a coffee just to lay back down again and fall asleep. I am glad i did have my lazy day as i feel re-charged and a bit more alive even though the attacks are back and as bad as ever before.

Again to be woken at 3 am this morning with the head from hell. For some reason this time i am getting a pulling sensation from the top of my head down the back into the neck. I think it is the swollen nerve that is damaged and i can now actually feel it running down my head and can follow the path and it matches the path of pain when the attacks come from. It also runs directly up to the scar on the top of my head so it shows me that is where the nerve must be damaged. If it is the nerve that is damaged as the specialist seems to agree with me then it is possible that nothing can be done about my condition and i will have to put up with these attacks unless we can find a medication that can put them to sleep, if the one i am on doesn’t eventually work. It is annoying because of the wait for the results and not knowing what is going on. It could just be a piece of bone from where the head fractured and all it requires is removing and the problem would be solved or improved, it could be something so silly but we just don’t know until we get the results.

So far this morning i have been able to ride the pain and not take my injections. I am starting to wonder if the injections are making things worst. It seems to me that if i ride the pain and put up with the attacks i get one or two and that's it, and when they are over i get a couple of days break. When i use the injections to abort an attack i then seem to get a lot more attacks during the day as well as the night and they seem to run for days after days where as if i ride them out i may have to do it for 2 maybe 3 days and then i get a break. With the injection it seems to last weeks and it seems like i am just putting of the inevitable. Saying all that, before i even had the injections they would last weeks anyway so i think the medication does have an effect on the attacks as it has reduced them but the injections delay the inevitable but are needed for when the pain is so bad it is beyond reasoning and you become suicidal (that’s why they are nicknamed “suicide headaches”).

I have to admit i have been very lucky when it comes to my condition. I have now got a group of people that support me and my family have been god sends through all of this. The doctor is following the specialists instructions to the letter, my chemist ensures i don't run out of medication or injections and automatically sorts out my repeat prescriptions so i don’t have to worry about them, CAU support team are there if i need anyone to talk to and also they monitor my medication very closely so i don’t get addicted to other pain killers etc. My mother and step father have been running me to all appointments and dragging me out of the flat to go fishing and visiting so i don’t stay locked away in my flat all the time. If it wasn’t for the team of people i now have supporting me i probably would have given up a long time ago. I owe these people a lot for all the support they have given me.

Well it’s New Years eve and i suppose that's why i have started looking back at how my condition has progressed over time and eventually become so bad i am in constant pain and agony. From thinking i was suffering with migraines or my teeth were so bad the nerve kept on becoming infected. How i would get attacks once in a while and seek out strong pain relief all the time and eventually becoming addicted to the strongest pain killers and opiates. Arguing with doctors and professionals that these attacks were real and not something just made up and over acting. Then finally getting the diagnosis and watching how key moments through out my whole life started to click into place and explained where all theses attacks and pains came from over the years.

Well the past few years have been hard and this is the first time in many years i actually feel like things are starting to happen and i may eventually put and end to this story or at least control it. Now they have done their scans and know what i have got hopefully with the right medication i will be able to put it to rest once and for all. If not at least i will be able to manage the condition with the help of the doctors and specialist so things are looking up for me. Also now that i am starting my “fishing tour” this year i am actually excited and for the first time in ages feel confident. With that in mind and my fingers crossed, that i can go fishing tomorrow as the weather is about to break, it is time to put an end to 2012 and look forward to a more positive and productive year 2013. Happy New Year!

Happy New Year and Pain Free wishes..

Another pain free day to chalk up thank god. I managed to stay pain free all day yesterday which was a nice break from the last couple of weeks of non stop attacks and pain. I have to admit though i was extremely lazy yesterday. I turned on the TV in my bedroom and lay on the bed most of the day watching films and programs only getting up to make myself a drink or go to the toilet. It was a nice change from always  having to battle with my head and take things easy because i would end up setting off attacks. Yesterday was different, although i was still taking things easy it wasn’t to keep away the attacks it was just to rest and re-charge my batteries, so to speak.

Normally when i get pain free days i end up running around like a chicken with its head chopped off. Trying to get all the things done that i put off due to being in pain all the time. Catching up on house work and doing the jobs that would normally irritate my condition and end up bringing on some big attacks. For once i decided not to catch up on the things i have put off but instead to try and have a bit of “ME” time and try and get back the energy i have lost over the last few weeks with all the attacks. It has worked as i feel fit and totally rested. I must have slept for wales yesterday as i remember nodding off just after lunch time only to be woken by someone knocking my door early evening. After dealing with the bogus caller, they called at the wrong block of flats, i decided to make myself a nice hot cuppa and go back to being lazy and watch a bit more TV until i fell asleep again. I didn’t have to wait long as i didn't even finish my cuppa and fell back to sleep. I woke up this morning, again early hours as my internal clock is all messed up, to find my cuppa half drunk and freezing cold by the bed side.

At least i wasn’t woken by a big attack as i usually am. I managed to drop off back to sleep for another hour but eventually had to get up as i was completely rested and couldn't sleep another wink if i tried. I am now up to 200mgs with my Pregabilin tablets so i now only have another 100mgs to go before i hit the maximum dose. I am hoping that by the time we reach the 300 mark my attacks will start to go into remission and i wont get as many painful attacks as i have been getting. I am still convinced the medication is working as even though i get the really big attacks and very painful ones i don't get anywhere near as many attacks as i did last year. I used to get anything up to 8 or 9 attacks in a day where at least 6 of them would be big attacks and the rest smaller ones. Now i am on the medication i get up to 6 in a day and 3 or 4 of them being massive ones and the rest smaller ones which i can usually ride out without medication or pain relief.

I have also noticed a reduction in the smaller attacks as i don't seem to get as many as i used to. In one respect that is great but in another respect it is bad as i know if i do get an attack now the likelihood of it being a small attack is very slim as i don’t seem to get them anymore and will usually end up getting a massive attack when it comes. Most of my big attacks can be dealt with by way of the injection. If i catch the attack early enough the injection will abort it completely but if i use it a little late or the attack has already begun then all it does is stop it from becoming so painful you pass out. Is till get the other effects of the attack such as swollen eye, sore neck, painful back, sore legs (when walking), swelling on the top of head along scar and of course the side of the face droops like you are having a stroke.

I am just happy at the moment because i managed to get through Christmas with out it being too painful and i didn’t have any where near as many attacks as i thought i would get. Christmas day went by with out any massive attacks appearing, especially at lunch time when the dinner was served. I surprised myself as with all the medication i am taking i don’t seem to have an appetite at the moment but when dinner came on Christmas day i ate all of it and almost cleared the plate even though there was a mountain of food served up. I am now looking forwards to New Years Day and the dinner my mother always cooks.

I don’t celebrate New Years Eve as i used to because i can’t drink alcohol anymore. I gave up drinking alcohol years ago as i seem to have an allergy to alcohol and it used to effect me 10 times worst than anyone else. So after many a hangover and feeling ill i decided it was time to give up. This was back before the turn of the millennium and a long time before i had such an issue with my head. I don’t mind going without alcohol as i have been told by many other people who suffer with my condition that alcohol sets off attacks and when it does it is usually the worst attacks you can imagine so i don’t think i will miss it any time soon.

Well its only one may day to go and its a start of a new year. Its amazing how quick the year has gone and as you get older the years seem to fly by faster than before. Its not until you sit down and look back over the year you realise there is so much you haven’t done but wanted to do but due to either ill health or laziness you just haven’t got round to doing it. Well with the new year on the horizon its a good chance to try and change this and promise yourself that you will try and sort things out in the new year. Let’s hope the start of the new year will bring a bit more luck than the last few years and maybe even get my condition under control. One big change to my diary is going to be a lot more fishing in the new year as it is the start of my journey around the lakes, ponds and rivers of Wales.

This is something that i have been planning and looking forwards to for the last few months and preparing for. I now have all my equipment and with the help of my mother and step-father i can now target any lake, river or fishery knowing i have the right tackle to take on any situation. I am also stating my specimen fishing so hopefully will catch some nice big fish and you never know i could even hook a record size fish over the next couple of years so fingers crossed. As well as this blog i also have my “Fishing Adventures Wales” Web site and blog in which i will be keeping records of every trip, every lake, every river and every fish i catch. So this should keep me busy in my spare time and the evenings. By mixing activities that i enjoy i will be able to come up with something that others will be able to enjoy just as much and even join in with.

Anyway, enough of my rambling on its time to start the day. Again its forecast to be wet and very windy so another day keeping out of the weather should keep me pain free i hope. I will be visiting my mother later today and stopping for Sunday dinner so i am hoping for another pain free day and praying that they continue into the new year. So i would just like to add…. HAPPY NEW YEAR EVERYONE! Make 2013 count, make it a good one!

Pain free at last but for how long..

Hooray! I managed to get through yesterday with no attacks what so ever. I did have a couple of occasions where the shadow started to build but it the disappeared after time. Even though i wasn’t getting attacks i still didn’t want to risk going out in the cold wet conditions and then start of the attacks again so i spent most of the day indoors watching the TV. It was nice to be lazy and not in pain for a change. instead of having to deal with it every other minuet of the day. I have now started to appreciate the pain free days a lot more now and try and get as much done as possible normally but for some reason yesterday i just wanted to be lazy and sit watching films all day. I then decided to have an early night and catch up on sleep i have lost during the week.

I had a restless night and couldn’t stop moving for most of it, i couldn’t help but fidget for some reason but eventually got to sleep. Again i woke at 3am but it wasn’t due to an attack or even shadows. I believe i am now waking up early as i am so used to doing it when i do have the attacks. I did try to go back to sleep but only woke again an hour later so i just got up and made myself a cup of coffee. I don't have any sign of an attack building nor do i have any shadow or pressure feelings. The swelling on my head is down and i have no soreness in the neck so i am hoping it is going to be another pain free day. I am well over due a break from the beast so fingers crossed and just make sure i don’t do anything stupid to set one off.

With Christmas over and a sign that the weather is warming slightly i could get a chance to go out fishing soon so i have been concentrating on getting things ready to start my fishing trips. I have a holiday in April coming up and i am looking forwards to that as well as there is some nice fishing lakes where we are going in Cornwall so i will get a chance to fish some of them. Also my results are due from the specialist anytime in the new year so hopefully we should have some good news from that as well. I must also go and get my teeth sorted out as the three they left after the operation are destroyed and have to be removed and false ones put in place. That is something i am not looking forwards to as i am now terrified of dentists.

I am just going to try and enjoy my pain free day and hope that is continues and lasts longer than just a few days. I am still increasing my medication and have a little while to go so i am hoping the attacks will eventually become controlled by the medication and i put an end to this living nightmare. Fingers crossed, here's hoping!

Will it be a pain free day at last?

Although i have been woken again at 3am it is not due to an attack this time but due to me actually getting an early nights sleep and just normally waking up as my body clock is so used to getting up in the early hours it is just naturally waking me up early now. I suppose i should find away of tiring myself out and getting my body clock back into sync again. It is actually a nice change being woken up and not having a massive attack spoiling the start of the day and being in agony for hours after. I can’t remember that last time i actually woke up pain free.

The only trouble is if i don’t have an attack early morning does it mean it is going to wait till later and then start giving me attacks later in the day or is it a sign that i am finally going to have a pain free day and a break from all the attacks. Well fingers crossed and lets hope for the best as it has been a while since i had a pain free day so i am going to make the most of it. I am just hoping that the weather doesn’t set one off later as it is forecast to be wet and windy yet again.

The last couple of weeks have been really bad, the rain hasn’t let up, there are floods and flood warnings all over the UK, and my head has been worst than ever with all this wet and bad weather. I say its is a pain free day when in reality what i mean is there is no pain in the head. I have woken with pain in my back for some reason and i feel like i have been punched in my kidneys as both sides feel tender and are aching but i don’t have an infection like i would have thought i had with the amount of pain coming from my sides. The last time my sides felt like this i was passing blood in my urine and was extremely painful to go to the toilet as i had a nasty infection. I am also running a temperature as i feel like i am sweating and as soon as a cold draft hits my skin i feel like i have goose bumps and start to shiver all over.

It is possible i am coming down with some bug or other illness but there are only mild signs at the moment and a bit of unwanted sweating and back aches. I am hoping these will ease off as the day continues and i start to feel a bit better later. I have the heating on full blast but still feel cold so i know there is something that isn’t quite right. As i am typing up this blog i have suddenly started t feel sick so i am wondering if its just another stomach bug as i seem to catch them very easily as well as colds. I know me being run down is the main reason why i catch bugs and colds so easily and quickly but all i can do is take the usual precautions everyone takes and try and stay as warm and dry as is possible.

Well its the end of another week and Christmas is now over thankfully so no more running about like headless chickens trying to find gifts for people. The only thing left to do now is see in the new year. I am not sure if i am going to be able to see in the new year with my family as i don’t know how my head is going to perform over the next few days. Either i will be OK and i will get to see it in with my mother and stepfather otherwise its going to be a night in watching the TV till i fall asleep. I don’t mind either to be honest, i would rather i spent the time with my family but if needs must then it will be alone in front of the box.

Can’t wait to be fishing again…

I am not surprised to be woken up at 3am again with an attack and then again at 4. It seems to be getting a regular occurrence now and i am getting tired of it. It has been a while since i have had a break from the attacks also and my body clock is now all messed up as i seem to be getting up when the attacks starts and then i stay awake all day and try and get an early night. I do sometimes manage to have the early nights sleep and i don’t feel so bad but when i don’t manage to get to sleep early the next day after the attacks i feel like the walking dead.

My face feels slightly funny today as if there is a slight numbness to the cheek. This is the after effects of a big attack i had this morning and my neck and back are also in agony due to this attack. Again i managed to use my injections to stop the worst but the last attack i had seem to just power through the injection and continue until i was in so much pain all i could hear in my ears was ringing and there was no way i could see out of my eyes as they were streaming so badly i could feel the front of my t-shirt becoming wet. The sweat was also pouring off me like someone had switched on my internal tap and left it running. When the injection did eventually take effect it kicked in so hard it took my breath away and made my chest very tight. Again making me feel sick and very very weak. I had to lay there perfectly still for around 10 minuets before i had enough strength to sit up.

I hate the really strong attacks as they are the ones that always scare me and i do sometimes wonder if these attacks will not just end up going too far and i wont recover. Well that is thought for another time as i don’t really want to think about that at the moment. The attack has left my face very sore and i keep getting sharp shooting pains up my back and also at the bottom of my spine where i am sat typing this blog. When i move about i get sharp pains up the front of the legs and they also feel like i have lead weights attached to the bottom of my feet pulling me down all the time. I know its going to take me a few more hours to recover fully and that is if i don’t have any more attacks in between. I am hoping not as i have again used up my injections early and will have to ride out any more attacks that come. I am not looking forwards to that.

Normally around this time in the morning the attacks seem to die away and i will then get shadows for the rest of the day. A feeling of pressure on the left side of the head and a constant sore neck. These shadows always threaten to set of more attacks as if they get too irritated or the neck becomes to painful then another attack will appear. If i am lucky then i will just have a sore neck for a while and no more attacks until late this evening or tomorrow morning when it gets cold. If i do become brave enough to go outside and the weather is just too cold then this will also trigger an attack and is one of the main causes of my worst attacks.

I am so tired of living in fear of being in pain all the time. Wondering if each time i get an attack is it going to be worst than the last. Wondering every time i step through my front door is it going to set off another one. Not being able to jump on a bus and go into town is really getting me down as i have had so many attacks when i have used buses i have lost count. Wanting to go and look around the shops and be able to socialise with out fear of getting pain or being in complete and total agony you are coiled on the ground holding your head feeling embarrassed at the same time as feeling scared and not being able to do anything about it. being away from your home, your sanctuary, the only place you feel safe when this happens and the only place you can let its run its course. I don’t mind getting attacks when i am out fishing for some strange reason but i think mainly due to that fact that i can hide away in a tent style shelter so no one can see me having the attack is probably the main reason.

Well i am just hoping its not as miserable and as wet as it has been for the last few days and not as cold. At least the weather wont set of my head that way. If the weather continues to warm up slightly and we get a break then i will get a days fishing in but i can’t see that happening for a while yet. At least it won’t be long before the winter is over again and i will be back out on the banks. At least it gets me out of the flat doing something that i love to do.

Stuffed like a turkey, now time to be lazy!

What a great day i had yesterday. A beautiful dinner cooked by my stepfather that was absolutely delicious. We followed dinner with a baileys bomb, baileys ice cream cake desert that was superb. I don’t normally like baileys but in the cake it tasted lush. I managed to eat nearly all my dinner and considering i have a terrible appetite now, due to the medication i am on, i thought i did really well.

I also managed to keep the attacks from appearing during the daytime. It did try to play up but a couple of painkillers, to take the edge off the neck pain, worked so it didn’t flare up until late last night after i had gone to bed. Then again this morning at 3am came another massive attack closely followed by another 2 about an hour after each other. The injections worked on the worst of the attacks so i have been lucky this morning as i thought at one point it wasn’t going to work as the attack was very strong.

At least they didn't spoil my Christmas day celebrations. That's all i wanted and thankfully was given the chance to enjoy myself for a change. When i returned home all i could do was lay on the sofa watching TV as i felt like a stuffed turkey. There was plenty on the box to keep me amused and after a few hours i was feeling so sleepy i was falling asleep as i was watching a film so i turned everything off and crawled into bed. What a brilliant day i had. I had some great presents from my mother and step farther and also my brother, who bought me a match fishing vest for when i fish the competitions during next year. I was so excited about this gift as i am looking forwards to going fishing soon and i am waiting for the bad weather to break and then i will be off fishing again. I am just hoping the attacks will ease off by then as well.

With the new year just around the corner i have been thinking of changes i would like to make and new years resolutions in order to improve my life. After many days and nights of thinking hard and at times i have wondered if thinking so hard sets off the attacks i get, but in reality i know that's not the case, i have tried to think of things that i can change that would improve the way i am living now and to be honest apart from the attacks i have been getting and wanting to fish a lot more there isn’t really many changes i want to make to my life. I have already given up taking strong pain medications and opiates in order to relieve the pain i get all the time as i ended up addicted to them and it has taken me years to get to grips with the situation and i am now on the road to recovery but believe i still have a long way to go. I have also changed the way i live and the people i hang around with as i now only tend to befriend people i think are “real” friends and not ones that are only after hand outs all the time and always tend to lead you into things that get you into trouble.

I have also change the way i am towards people and now try to help out people who need it a lot more than i used to as now i know what it is like to be disabled. To be in pain constantly and to be restricted in the daily functions you are able to do. I have a new respect for those who are ill and in need as i myself now know what a disabled person feels like as i can’t do the normal things that everyone else takes for granted. Just to be able to walk to the shops with out being scared of the attacks coming or having an attack on the way or worst to have an attack whilst in the shopping store. This has happened to me before and is very embarrassing and upsetting as you don’t want people seeing you rolling about in agony and screaming as the pain is so much. Not to be able to go out in the day because there is a cold breeze that will set off my attacks so i end up locked away all the time. Having to turn down invitations to parties and celebrations all the time because you know people don’t want someone ruining their celebration by suddenly having a bad attack in front of all their guests. Not even able to find work as trying to work under these conditions would be totally impossible. Imagine trying to explain to your boss why you could only work 1 day out of a week as the rest of the time you have been having attacks and unable to get out of the flat. I don’t think you would last very long in your job in these circumstances.

On a more cheerful note, Christmas day is over so all the stress and worry of trying to make the day special is now put to rest so we can now enjoy the seasonal celebrations. There are loads of good films on the TV to watch and it will soon be party time again with the new year celebrations less than a week away. Not that i can drink as alcohol is also a main trigger for my condition, not that it really matters as i haven’t drunk alcohol for over 10 years now and have to admit i feel a lot better for it. Why would anyone want to put themselves through the “hangovers” is beyond me. OK! YES, i used to get drunk and i would always end up with a hangover the next day but now that i have given up, the thought of having a hangover due to drinking too much makes me sick to my stomach and has now put me off drinking for life. I find it funny and amusing watching others getting drunk and fall about all over the place. That to me is just as good as getting drunk as i don’t seem to mind if others are drinking while i stay off the alcohol.

Its boxing day today so i am going to have a day of taking things very easy and lazy. I have some strong shadows today so there must be another change in the weather coming. The last few months have been very wet and windy and there is still loads of flood warnings around the country so we are in for a lot more wet weather. I just thank my lucky stars that it wasn't snow as i would be in real trouble and would be getting attacks all the time. I remember the 2 weeks of snow last year, a time i would rather forget with the amount of attacks i was getting. So fingers crossed for some better weather and even a bit of fishing for the new year.

Feel like i have been hit by a baseball bat….

I think in my heart i knew i was going to be woken early on Christmas day! I managed to get back to sleep for an hour after the first attack about 2am this morning. I was then woken by an even bigger attack that was a little scary if i am to be honest. The pain was so bad i thought i was about to have a heart attack or worst a stroke.

I have had a few attacks that have done that to me and sometimes wonder if i will eventually fall to one of them. The pain becomes so strong you sometimes faint or pass out. I know for sure that i have passed out even for a couple of seconds as i get that horrible metallic taste and head throbbing when you come around. Unfortunately it doesn’t just stop when you have fainted. When you do come around you realise you are still in a lot of pain and it all starts again. This all happens in just a few seconds but when in pain feels like ages.

Again used up my injections early but wonder sometimes if you get used to having them so the body is now waking me up and giving me the big attacks. Maybe i should take a break from them and try and ride out the pain for a couple of days. The trouble with doing that is i will have to ride out the big attacks and trying to do that is very scary and hard. Instead of just lasting a few  moments, up to 30 minuets maximum when you take the injection. It will last anything up to 2 and half hours. I am not sure if i have the strength in me any more to ride the pain for that long each time an attack comes.

Yes the amount of attacks have decreased since i started taking the medication but i still get anything up to 4 big attacks in the mornings. I do get some smaller attacks during the day and some at night, but they now seem to be mainly in the early hours when the temperature is at its coldest. It is strange how i am getting constant attacks all the time now in the winter when i used to have more breaks. I am lucky to get 2 or 3 days in a row with out having a big attack. I am just hoping i get a break soon as its making me feel very weak at the moment. I am due a break so just pray i can keep the attacks from happening during the day. I am even breaking my rule and taking some pain killers on top of my medication just to try and stop the neck from hurting and causing me another attack. I stopped taking pain killers as i used to eat them like sweets and was making myself extremely ill so after today i wont take them anymore as i don't want to start down that road again.

I am still waiting for news of my scans and know in reality it won’t be until the new year when i get the results. I am praying they haven’t found anything that is going to make things worst and pray its something stupid like a bone chip resting on the nerve or just the nerve itself. The swelling on the top of my head is getting bigger and now stretches down the back of my head following the path of the pain. When there is swelling it means there is something the body is trying to heal but cant and that's why it swells up. To me that is a sign there is something there on the area of my scar. If its not something there causing me the pain and the swelling is just the nerve as it is damaged then i will accept my diagnosis of CH, but surely something can be done to stop the swelling and maybe that will then in turn reduce the number of attacks and the severity of the attack. Again i am just guessing and can help but wonder what in doing this to me.

Anyway its Christmas day and that is a day to enjoy with your family getting together and celebrating so i have to cheer myself up and see if i can get this ache and pain to stop on the side of my face. At the moment i feel like i have been hit around the head with a baseball bat. This is the after effects of the big attacks. Eventually it will ease off but maybe if i jump in a nice hot bath it will ease and stop most of the aches and pains especially the ones in the back. So Merry Christmas and have a great day, that’s what i am going to do and take my mind off all the worries and stress. Lets enjoy the day and get in the Christmas spirit. Can’t wait for the Christmas dinner and i am hungry already just thinking about it. HAVE A GREAT DAY ! MERRY CHRISTMAS EVERYONE!

Merry Christmas and Happy New Year!

At least all the worst attacks are over and done with by the time everyone else decides to get up. These early morning wake up calls are becoming an issue with the bad weather just not letting up. I know it is still the cold setting them off as i can feel the cold band around my head when i first wake up in the mornings followed by that sharp pain that shoots over the top of your head and behind the eye. If it wasn’t for the injections i would be in serious trouble as i don’t think i would be able to cope with out them. OK i have to go the rest of the day watching what i do and making sure i don't cause any big attacks to appear as i will have to just ride them out with no injections to abort them but at least i don’t have to put up with the strongest ones first thing in the morning.

I am starting to wonder if the body is getting used to me taking the injections and that is why i am having so many of the early morning wake up calls. I could be wrong and it could just be down to the bad weather but i have been trough all this before and can honestly say i have never experienced so many big attacks in such a short period of time. If this was the case i would have thought that the body would react differently and want the injections all the time no matter what time of day it is. It seems like during the day the worst of the attacks stay away because i watch what i am doing and make sure i don't end up cold enough to irritate the side of my head. I still get the attacks that creep up on you with out any warning signs during the day and some times even get a bad shoulder with it and this can also set off attacks especially if it is painful.

Well its almost Christmas and all the fuss will be over for another year and by the looks of things i should get away with having a half decent holiday celebration that is relatively pain free. I am just hoping it continues like this for the next couple of days and i manage to see the new year off to a good start with controlling my condition. I have been continuing my medication increase and have just started the 200 mgs per day dose so i am hoping this is also having an effect on the attacks and pray that i am having a lot less than before. It is very difficult to tell as no month is the same as another, so as far as noticing the increases or decreases in the amounts of attacks is very hard but they are noticeable if you write it all down. You will eventually see that i am not getting as many during the day as i was before and a decrease in the amount of attacks when the weather is really bad.

With the new year just around the corner i am hoping this will be the start to me getting my life back in order and also time for me to start my journey of discovery as i call it and start fishing the rivers and lakes of Wales. All though i have called it “Fishing Adventures Wales” we will still be fishing other areas of the UK and even booking some trips abroad in the next few years, especially France, as i fancy catching myself a record size fish from the French waters as they seem to be growing so much bigger over there. With so many great venues and different waters to fish around Wales i can see myself being spoilt for choice when it comes to planning my fishing adventures.

All i can do, for the time being, is again keep my head warm to stop any big attacks from appearing and make sure i keep taking my medication as instructed. I have spent the last couple of months preparing myself mentally for the up and coming fishing trips and wish i was also physically prepared but this will happen in time. I am very impatient when it comes to doing things for myself and wish i had these attacks under control but i also understand this will only happen when the medication is correct and we have all the information needed in order to try and solve and control my condition. As we are still waiting for the scan results i have to try and stay a little more patient than i normally am and hope that what ever is causing these attacks will soon come to light and then we will be able to do something about it.

For now i would just like to thank everyone for all their support and help when it comes to my condition and especially a big thank you to my mother and step farther for all their support and understanding and i would like to wish everyone a “ Very Merry Christmas and Happy New Year” and wish everyone success in 2013.

Every thing hurts … give me a break!

Again i have been up since 1 am this morning with a number of massive attacks. Not only have i been getting the attacks but have also been sick on a couple of occasions so i think i might have a bug of some sort. What ever it is, at times, seems to be making my head worst and i have been having more attacks since i started to feel funny the other day. Normally if i have a cold or fever i get the sniffles and a sore throat to warn me that i am about to become ill but with this there was no warning what so ever.

There are no other symptoms apart from a bad stomach yesterday and the runs witch i managed to control using tablets. Then today i have been sick twice but with no warnings as i didn’t feel sick till a couple of seconds before i actually was. The same the second time witch i find strange as normally i would be doubled over curled up on the bed feeling ill before as i just cant stand being sick. The only thing i can think it may be is a bug that's been going around that seems to make people ill for 24 to 48 hours.

I am still hurting from the massive head attacks this morning. i have had big ones before but these i have to say are among the worst i have had. When they are this bad it tends to take me about 2 to 3 days just to recover from then. i have pains shooting up the back and just moving around the house is very painful so its going to be a day of laying in and resting. i just wish i could go back to sleep for a bi, then maybe i wouldn’t feel so bad.

At least its the weekend i have an excuse now to just lay in bed all day being lazy. I can’t see the point in getting up if its just going to make me feel worst and end up in more pain, saying that, what else can i do as i can’t sleep due to everything hurting and my face is also sore to the touch. I am in a catch 22 situation. Don’t move because it will hurt, don't stay still because it will hurt!

Looking forwards to the warmer weather

Another early attack from the beast. this time it started at around 1am and constantly played with my head until it eased away at about 4am. Several attacks in a row and a neck that feels like it is on fire/ I keep getting shooting pains over the top of the head and even though the attacks have eased off, the sharp pain is constantly there. Thank god i decided on an early night yesterday as i was feeling a little run down and suffered a bout of diarrhoea.

The shadow remained strong yesterday but didn’t evolve into big attacks as i managed to keep them from building by making sure i stayed relaxed, warm and didn’t do anything that would irritate and set of my condition. Where i was so tired it was about 4.30pm –5pm that i crawled into my bedroom and collapsed on the bed. It goes to show how tired i was as i fell asleep straight away and don’t even remember getting undressed for bed but i did at some point i know that much.

It looks like with the early mornings always being cold due to the time of year i think this is going to be my worst times for a while. I seem to be having all the bad attacks when i wake up early and end up using my injections. The attacks i get during the day are no where near as strong and i can usually ride that pain out until they are finished but it is still hard to cope with and takes a lot of my energy. I still feel a little tired even though i have had plenty of sleep. Getting up when it is still dark makes the body think it is still the day before.

I should be thankful and hope my body gets used to getting up early hours of the morning as when i do eventually start my fishing trip of the lakes and rivers of Wales i will be setting of early hours on plenty of occasions. As soon as the weather starts to get warmer that will be it i will be off fishing again as i have been missing it so much. I now have ALL the gear and tackle i will need through the year and a great selection of baits and attractants that will hopefully land me some great specimen sized fish on the bank.

Pain please stay away its shopping day!

Yet again i managed to stay relatively pain free yesterday daytime and most of the evening as well. It wasn’t until i decided to have an early night when it was interrupted by a massive attack. The attack lasted about 45 minuets to an hour and left me with pain in the neck for the remainder of the night. I was glad i did choose to have an early night and even though i had an attack i still managed to get to sleep early and slept through till 4am when i was again woken by a big attack.

The attack just kept on growing in strength this time so i had no option but to take my injection to try an abort the attack. When the injection kicked in it seemed to take a while before it eased the pain this time. The attack was that strong it just didn’t want to go but after 10 minuets of taking the injection it was gone. I tried to lay down and fall back to sleep but my head and neck was having none of it. As soon as i closed my eyes i felt pain shoot over the head into the neck and the neck then started to hurt. The shadow then started to build again and it was very strong so i had no choice but to get out of bed and go into the front room.

I didn't want another attack so soon after the first one so i jumped on the oxygen. I could feel the shadow starting to ease after 10 minuets and then suddenly i was out of oxygen. I looked at the gauge and it was on the bottom of the red, empty. I then turned on the fire and placed my head next to the electric fire to warm up my head and face as this heat sometimes helps to get rid of the pain and the shadow but it was having none of it. The pain just started to get stronger and stronger and again i was forced to take my second injection so early in the day.

I have now left myself with nothing to abort the attacks during the day yet again. If yesterday was anything to go by i should be ok until this evening when the weather and temperature drops start to effect my head again. Its crazy how they have turned nasty in the mornings and evenings and seem to stay relatively calm during the day. Ok i have had a few big attacks during the day but no where near the amount that show up early morning or late evening. This is what convinces me about the weather being the trigger for the attacks.

Well it looks like another chilly and damp day today, according to the weather it will stay clear and cloudy but according to my head we have some bad weather on the way. It’s crazy how the head reacts to the bad weather and i can usually tell when we are about to have a rainy period or cold period as the head really starts to play up a couple of days before. Its shopping day today, I have to get out of the flat and do some shopping for myself as there are a few things i am in need of and every time my head gets bad i keep forgetting to go to the shops. Lets hope the beast stays away and i can have another day relatively pain free. That will do just nicely.

Shut away another day!

Not a lot i can say really! Again i was woken at 3am this morning and again at 5.30am. I did try and go back to sleep after the first attack only to be woken by a second more painful attack. I managed to stay relatively pain free yesterday afternoon as all i had was a sore neck and face with some strong shadows. I was very lucky not to have any more big attacks yesterday as i could feel them building but after a while they would just disappear.

It seems like the early morning ones are going to be the worst attacks i get for a while as the temperature is still dropping very low during the early hours but the days seem to have warmed up so i am not getting any where near as many attacks during the day as i normally get. This is good news in one respect as i may end up having a pain free Christmas after all. It does get me down, being woken up early hours all the time so i am going to have to adjust my rest time to accommodate the attacks. If i get an early night it doesn’t seem to worry me so much as being woken up at 3am and being totally shattered because i haven’t slept properly the night before. Because i haven’t slept the attacks seem to drain all my energy and strength so i have to make sure i get a few early nights i think to make up for it.

Its not long now till Christmas day and the holiday celebrations so i intend on getting as much rest as i can so that i can enjoy my break with the family and hopefully keep the attacks from appearing. The trouble with having early morning attacks all the time is i tend to end up using my injections early and have none left to abort any big attacks later in the day, if they appear. I am hoping that with plenty of rest i should be able to avoid the daytime attacks and will only have to put up with the early morning or late night ones if they come.I will just have to put up with the attacks if they appear later in the day and ride them out like i used to when i didn’t have the injections or medication to help me. Its not easy but it can be done.

Well another early start to the day so i think i will get all the house work done today as i have been putting it off in case it ends up causing me worst attacks as this sometimes happens especially if i strain my self or try to lift to much weight with the left arm. If i do anything to irritate the left side of my body from the shoulder upwards then it will end up causing me an attack and can sometimes put me out of action for the entire day. Its amazing as time goes on i have noticed so many different triggers that can set off an attack if i was to list them all it would probably take a couple of days to get through them, but by noticing what sets them off also helps me to avoid situations that can and would make my attacks worst.

Again it’s just a matter of keeping warm if i go out anywhere and try to avoid situations that will end up causing me pain. Its not always avoidable but you can usually stop the worst ones coming if you manage to catch them in time with the medication or injection or if you spend the day making sure you don’t do anything to irritate them. Not always easy as sometimes when you are pain free you forget about your condition until it is too late. The weather forecast is again saying it will be very wet and windy so i think its going to be a day indoors anyway, not that it makes any difference as i seem to be shut away most of the time no anyway.

Eye poked out with a hot poker.…

Yet another 3am wake up call form the beast! It seems as the weather gets colder and the temperature drops it must always be at its lowest around 2am – 4am as that is when the worst attacks seem to appear. I do still get some during the day time but they are usually brought on because i am still in pain from the early morning attacks. Also with them being so strong and lasting for a long time i am using up my injections early leaving me with no way of aborting the attacks later in the day. The attacks are so strong at this time in the morning that it is a 50% gamble whether the injections will actually work to stop the pain. I have had times when i have had to ride out the attack anyway even when i have taken the injection and when they are that strong they scare the living daylights out of me. I sometimes believe it will be one attack too many one day and i wont be able to cope with it and will end in either a stroke or worst.

The swelling on the left side of my head is right up today and i have sharp pain over the head. This is the after effects of a strong attack and can sometimes be just as painful and lasts anything up to 4 or 5 hours. My jaw feels like it has been broken and my eye as though someone has used a hot poker to poke it out. I am getting shooting pains up my back and into the base of my neck and it feels like there is something stuck in there. I cant actually see properly out of my left eye as there is still pain and is watering slightly causing everything to blur. I sometimes wonder how much more can the human body take? What is the level of pain where it says no more? and eventually the brain shuts down?

For now all i can do is wait for the results of the scan to find out what is going on. If they turn around and say to me there is nothing there and i have to put up with this condition for the rest of my life, managed daily using drugs and injections and eventually having periods where it will go into remission so i can live some sort of normal life, then so be it! I will accept it and try and find a way of managing it. BUT!!! Something inside of me is telling me there is something there that is causing the swelling to appear. What ever it is is also for making my condition aggravated and worst than it actually should be. I accept i have damaged the nerve and now suffer CH when i had my head split open. But what ever is causing the swelling is making it way more painful than it should be.

Fingers crossed when i do eventually get the results it is something that they will be able to treat and do something about. I am praying it is not going to be bad news and that it will eventually make thins worst for me. At the moment my quality of life has slipped away and the attacks dictate everything i do. When the warmer weather changes this will change as i tend to get less attacks and more pain free periods where i can rest and recharge. I am just hoping it doesn’t continue like this constantly through the year as there is always is a risk it might, At the moment i am trying to concentrate on a up and coming holiday away down in Cornwall that my mother has planned for us and also getting my fishing gear ready for the new year. In order to help me stay calm and keep busy as not to let the attacks rule me i will be doing as much fishing as i can, this will also help getting me out of the flat so i am not shut away all the time.

At the moment all i can do is stay warm and hope i don’t get as many attacks as i did yesterday and i get a few more pain free days preferably during the Christmas break.I don’t mind putting up with a couple of painful days in exchange for 2 or 3 days at Christmas time so i can enjoy it with my family. I am still on the increase of my medication but its still early days as its a slow increase done weekly and i am only on the second week so there is no change in the effect they are having on my condition. Lets just hope things start to improve soon.

Attacks are back!

So much for the pain free days! I was just woken up about 45 minuets ago and its now 02.22am. I knew it was going to be a bad attack because as soon as i woke up i was drenched in sweat. There wasn’t any sign of pain at first, all i could feel was a slight feeling of pressure and a little light headed. Suddenly there was a sharp[ [ain appear behind my eye as if someone had just poked me straight in it. Then the pain started to spread over the top of my head and down into my neck. Severe  sharp pains constantly as is your face is on fire. All i could do was massage it and then rush into the front room to take my injection.

The injection doesn’t work straight away and if you leave it too late it wont work at all and the attack has to run its course. There was a sharp pain under the skin where i had injected myself and then it leaves a red circle where you press the pen down on top of you leg muscle and a lump under the skin where it has injected the medication. It takes a little while because this medication then has to slowly absorb into your system through the blood vessels in your muscle and skin.When it does take effect sometime i get a tight feeling across my chest and find it difficult to breathe. I even feel sick with it at times, but these are just the side effects of the medication.

When the injection has finally worked the attack is aborted as fast as it started. The only trouble by aborting them in this way is i am now convinced that you will end up having the attack sooner or later even if you abort them as what ever is causing the attacks to happen need to run its course in order fro them to stop for a while. Well that's what i believe anyway.

Its only a short blog today as i am absolutely shattered and need to try and get some more sleep I doubt i will be able to now as i have the strong shadow feeling and i am now sure that i will have an attack later this morning. I am just hoping that its not too painful and i can get them over and done with and hopefully get a break from them for Christmas.

Fingers crossed the weather and head keeps improving.

With all the early morning wake up calls i have been getting lately my body clock seems to be stuck in the early morning position. No mater how much i try and lay in i always seem to wake up between 3am and 5am even if i am not getting any sign of attacks. Ok i have to admit i have a bit of the shadow and feeling of pressure on the left side of my head but the neck and back seem to be behaving itself and i haven’t had any sign of the attack building up, yet!

I am going to have to try and shatter my self so that i sleep right through with out being woken early hours again. The weather has warmed up as the forecast is above 12 degrees today so there must be rain in the horizon as my knee keeps aching and it doesn’t do it unless we have wet weather. I think that's the start of arthritis setting in. I seem to get the aches in me knee (where i had the operation for a snapped cartilage) , my shoulder (where i broke it) and my wrist ( from when it was fractured) when the weather is wet and we have rain coming. These types of aches and pains are nothing compared to what i normally get ion my head and neck so they don’t really bother me, but can get annoying after a couple of days of constant aching.

If the weather keeps warm and we get some clear days i may be able to get another day of fishing in as i have been missing it like crazy. just to be by the bank side setting up my tackle, feeding the swim and trying to catch fish seems to relax me and keep me calm even when i get big attacks building. If i get an attack when by the waters edge all i have to do is climb into my bivi or gazebo umbrella (what ever is up) and take my injection and stay in there until the attack has passed. I don’t mind this as there is no one about to see me in agony and i don’t feel embarrassed when it happens. this also allows me to continue fishing as soon as the attack is over and i don't have to retreat all the way home like i normally do when out doing other things.

Well fingers crossed the weather improves a little and the forecast is correct as on Friday is forecast for clear skies, sun shining and the temperatures should be between 9 and 12 so it will be warm enough to go fishing. If not i will just have to wait for the new year and autumn to start, With the weather warming up i am getting a lot less attacks again and i am hoping it will give the medication a chance to work. I am still not getting as many smaller attacks as i was before but i still get the big ones and they are ad painful and as strong as they ever were, sometimes i would say they are getting even stronger (if this is at all possible). Lets just hope with the warmer weather and increase in medication my head keeps improving and i get a lot less attacks.

Fingers crossed for more pain free days.

Another 3am wake up call this time not caused by the attacks but by the strong shadow i get when the attacks are building, Like a feeling of pressure being placed on the left hand side of the face and head. Its a feeling like someone has placed something heavy on the left side of your face and is constantly pushing down on your head. I think this is caused by the swelling that appears along the site of my scar on the left hand side. Normally i only get the strong shadows when i have had some bad attacks before hand but for some strange reason it has come before the attacks this time.

At least i wasn’t woken with a huge attacks and total agony like i normally am. the only trouble when the shadows are this strong is that there is no way on earth i can get back to sleep now. I will have to wait until i get a massive attack before this pressure feeling will ease off and i will be able to rest again. Its times like this when i get so annoyed with my illness and condition. All i want is to be able to rest and get a full nights sleep but just lately i haven’t been able to and i am getting more and more tired as days go by.

If its not the cold setting off the attacks then its the pressure on the side of my head. If that's not bad enough even laying in bed, if i turn and lay slightly awkward it causes the neck to start aching and that in turn will also set of the big attacks. I can’t win! There are so many different triggers for my condition it is ridiculous. Even down to things that i sometimes eat, I have had ice cream set off bad attacks i have had chocolate set off attacks and even drinking coke-a-cola can set off attacks. If i am too cold or too hot i can set of an attack. If i strain myself on the left hand side by lifting too much weight like shopping in one hand i can set off attacks. Even down to walking for too long and causing pain in my back will also set of attacks when i don't want them. No matter what i try and do to control them i always seem to find a way of setting off the attacks.

The weather has finally warmed up slightly from the freezing weather we have been having for the past few weeks and i have to say i am so glad as the amount of attacks has now reduced dramatically. I am still getting attacks but no where near as painful as they were when we had the freezing weather. I am hoping it stays like this for Christmas and i won’t be so bad, that way i will be able to enjoy the couple of days celebration with out having to lock myself away in my flat like i normally do when things are bad and the attacks wont stop.

Bad Head means Bad Weather?

At least i managed to get my shopping done before the attacks came back yesterday. Even though i kept the flat as warm as i could and wrapped up when i went out anywhere, the cold still managed to affect my head, The weather had actually warmed up slightly and was very wet but even still my head was playing up something rotten. The shadow was with me all day and while i was running around shopping it kept flaring up threatening to build into a massive attack, there was several times i wanted to jump off the bus and run home but it managed to stay away until i was finished.

It was on the way back from Tesco when i started to get shooting pains up my back and a sharp stabbing pain behind my left eye. Each time i tried to rub my eye i would get a pulling feeling over the top of my head where the scar is. A feeling like when you pull a muscle in your leg or even when you get cramp, that sharp pulling pain you get! This would then get stronger and spread its way down the back of my neck and into the top part of my spine. The eye was streaming with water and i couldn’t see anything apart from a blur. My face felt like it was on fire. I continued to have several of these attacks through the evening and even though i turned up the heating and kept myself warm it still didn’t stop them from starting.

I managed to fall asleep about 11pm last night, thankfully, but was again woken up with a big attack at 3am this morning. The heating is on so it’s not the cold that has caused it to appear so i am lost as to what set it off. As well as being a bad attack it has left me with a sore face and neck and a very strong shadow so i think there are more to come. I know it could be due to a low pressure area being over us at the moment as yesterday it rained all day and i think we are in for the same they way my head is acting. I just hope the attacks will be minimal and it wont be too painful today.

Don’t want to be shut away on Christmas Day!

I managed to stay pain free most of yesterday apart from when i popped out o do a bit of shopping and the cold wind  wouldn’t stop blowing into my face and ended up causing me a small attack in the middle of the shop i went to. I don’t mind but its a little embarrassing having to pull your trouser leg up so you can take your injection to abort it, in front of all the other shoppers and store staff. Trouble is when you are out like that and you are away from home you don’t really have much choice when the attacks start.

The rest of the day continued to be pain free and as soon as i got home i put the heating on, as i was starting to get the shadows, and as soon as the flat and myself warmed up the feeling was gone. Now when the attacks appear like that and also disappear just as fast i don’t mind it so much as they don’t seem to reach the level of pain that they normally do. These type of attacks i get can normally be taken care of with the injection and if that don’t work then the oxygen would come into play, but when you are out and about you don’t get those options so you have to pray that it aborts at the first attempt otherwise you are in trouble. The last time i was caught out was when i was shopping at Tesco a couple of moths ago and i ended up having a full blown attack and ended up trapped in the disabled toilets unable to come out due to my face streaming with water and my eyes were swollen shut. By the time help had arrived it was already too late and the attack had taken its course. I remember being stuck in there for almost an hour before my neighbour came and saved me and drove me home in his car.

I wish i had the smaller attacks all the time as it wouldn’t be so bad only having to deal with them. I am dreading this time of year as its celebration time for Christmas with everyone visiting each other, and attending parties and functions. For me its a time to stay shut away from the crowds as i don’t like to be seen especially when my head is bad. Also i don’t drink as i found out years ago drink has a nasty affect on me and will end up with me curled in a corner in complete agony even if i only have the one alcoholic drink. It starts to get annoying when people keep asking, ”why aren’t you drinking?”, “What's wrong with your eye or face?”, “Headaches, we suffer them , we know how you feel!” When clearly none of them seem to understand what a CH sufferer has to go through on a day to day basis. For these reasons i would rather stay at home and celebrate the time of year on my own.

At the moment keeping warm seems to be working at keeping the worst of the attacks at bay and i am hoping that over the next couple of weeks i will be able to continue to get some pain free time to spend with my family, especially Christmas day as i want to spend it with my mother and enjoy my dinner with out feeling sick because of the pain all the time. I am hoping so much that the medication i am taking and the increase we are going through will soon start to take effect again like it did when i started to take them and begin to reduce the number of attacks i get. Well the weather forecast seems to say that it will warm up again and we wont have the freezing cold weather like the last 3 weeks so hopefully i wont have as many attacks set off by the cold. If i stay wrapped up also i should be able to keep the worst away but there is no telling how i will react and if the attacks will stay away for long. All i know is i am pain free at the moment and that’s all that matters.

Using heat to control the attacks! So far so good!

Using the heating i have been able to keep the attacks away again until early hours this morning. Yesterday evening i stated to get pains in my neck and the side of my head so i decided to keep the heating up on the 20 degrees mark again all evening and it worked to keep away the attacks. It wasn’t until the temperature dropped down to freezing again around 3am when i started to get pain and it woke me up. \i rushed onto the front room and jumped on the oxygen, after around 15-20 minuets the attacks eased off and has left me with a sore neck and tender face. I have turned on the heating once again and the shadow feeling that i get is no longer as strong as it was and has eased away to a dull ache.

Its really weird how the cold affects my head so badly and the attacks seem to ease off when i warm it up. Mind you this doesn’t always work. When i get the massive attacks it doesn’t matter if i have the heating on or not or if i am warm. No matter what i try to stop them they just seem to build in strength and last a long time. It seems that the ones that are set off by the cold are controllable through heat. In a way it is good as it gives me another weapon to fight the attacks i get and have helped me to reduce the number during a day. I am hoping things continue  like this as it is a lot easier to control them.

I know i will still get the big attacks and am hoping that the medication will soon come into play and help to control them as well. If i can get these attacks to reduce in number and find that i can control them with the drugs and heat then i will get some of my life back. At the moment all i seem to do is lock myself away all the time. I don’t go out unless it is completely necessary and am always wrapped up with woolly hats and thick coats, if i do, in order to keep the cold out and stop it from setting off the attacks.

This doesn’t always work as when the wind blows in the eye it always seems to aggravate it and cause me agonising pain. My back has become more and more painful over time and as the years go by i seem to be getting worst. I am hoping that by getting the head under control it will improve on the condition of my back and help to ease the pains and aches i seem to be getting. I am praying that its not something else that is causing my back to be bad all the time, like arthritis, and even though i get the attacks under control i will still end up having back issues. It gets so annoying as even when i walk its like i am lifting lead weights and get electric shocks up the spine with every step.

Well the weather forecast says it will start warming up over the next few days and we are in for a lot more rain. The last couple of weeks have been murder with all the cold weather and frozen mornings we have been getting. I am frightened to go out in the cold in case it sets of my head badly and then when i do go out it is only for a short while. If i minimize my exposure then i will minimise the attacks or something like that! Again its time to stay warm and wait for the weather to improve. I have been dying to go fishing but the weather has been so cold we have put it off till the new year now. Even though i have a bivi and umbrella that i can hide away in if i do get any attacks and keep out of the cold and wind i still think i will end up in agony due to the temperatures so i will have to wait for better conditions.

Staying warm helps to keep the Beast asleep!

Thank god for a nice lay in this morning. After the last couple of weeks every bit of rest is so needed at the moment. With the cold nights and cold mornings causing my head to play up so badly it has really been getting me down. I have noticed if i keep the heating of the flat up in the nearly 20 degrees mark then i don't seem to have as many attacks as when it is down below 15. This confirms what i have been saying about the cold being one of the main triggers for my condition. The trouble is with it being so cold lately to keep the temperature up all the time in order for me not to have attacks will cost a blooming fortune! Just running the heating for 2 days and a night at that temperature has eaten almost £5 in credit. To keep it going like this for a full week would take all of my money so i have to try and find another solution.

I have been trying all sorts in order to keep the heat in for longer and not escaping in order to make it cheaper for me to run the heating. I have placed blankets and drops over all the doors and along the gaps at the bottom of the doors to stop the heat from escaping. I have put foil behind the radiators so that it reflects the heat back into the room and not spends half the time warming up the flat walls. I have kept all the windows shut and the curtains too so that heat doesn’t escape. The trouble with this is that it has become so stuffy in the flat and being a smoker isn't healthy not having ventilation so i have decided to chuck that idea in the bin.

I don’t know of any other ways to cut down the cost of heating in order for me to have it on constant. The only thing i can do is keep it on the timer and try and use it sparingly. The trouble is the slightest drop in temperature or the smallest of drafts and i will feel it immediately. I get a cold feeling on the top of my head before i feel anything else anywhere. Even my hands and feet seem to stay warmer than the left side of my face, it seems to be so sensitive to any change in temperature or the pressure when we have bad weather. You could say it has now become and early warning system for cold weather fronts approaching so it does have one use being this ill (you have to laugh or i would cry).

For now all i can do is stay wrapped up and try and use the heating only when i think it is really needed, in the early mornings and late evenings when the worst of the attacks seem to appear. During the day i do get attacks, mainly smaller ones and ones that are set off by my neck and back hurting all the time. I do get some big attacks but no where near as painful as the early morning and evening ones so i think i could handle them as long as i keep the worst ones away.

I have started the medication increase like the doctor has told me and am hoping that it starts to improve my situation soon. When i started taking the medication i noticed it took around 2 weeks to start to have an affect but when we stopped increasing it and stayed at the same level for a fortnight i noticed that the attacks just came back. It has still got rid of the smaller ones during the day as i am not having anywhere near as many attacks as i used to have. If i compare it to last year i would say i am getting about 60% of what i used to get so it is an improvement, a small one but still better than what i was like. However! the big attacks that i get seem to be a lot stronger than what they were like last year, either that or i am getting weaker and can’t take the pain like i used to.

The pain is so bad! HELP!

All i can say is OUCH! I have had some of the worst attacks i have had to date. They started yesterday afternoon. I noticed myself suddenly drop in mood and get upset at the slightest thing but i couldn’t work out why. Then all of a sudden they began, first the side of the head started to swell up and the pain became so unbearable all i could do was roll on the ground in agony massaging my head vigorously. Even though i took my injection all it did was ease it for about 2 minuets and then it just started again. It was like my face was on fire. The pain just kept increasing even to the point that i started to feel light headed like i was going to pass out. Ringing in my ears became so load i couldn’t even hear the people on TV talking. Sweat was pouring off me and making me feel freezing cold.

These attacks continued through the night, one after another. I couldn’t believe what was happening. It scared me a lot last night i was even tempted to call an ambulance i was so bad. I couldn’t walk properly every time i tried walking to the toilet in order to be sick i had to hold on the the walls to guide me as i couldn’t see properly out of my eyes and i just felt like i was going to collapse all the time. Even when it got the the point where i had thought the attack had stopped all i could do was lay there on the sofa with my head in my hand and then around 5 to 10 minuets later another attack would start. Why, what had i done to aggravate it so badly. I counted over 15 attacks last night and 5 so far this morning. I can’t believe I've been so bad.

I don’t understand why it has been so bad for so many hours as i have tried to keep warm, i have been taking my medication religiously and have followed all the advice given by the doctors and neurologist  and have been using my oxygen but nothing seemed to help no matter what i did. So far the attacks have stopped and its almost 6am, the start of a new day. i have had no rest what so ever and my body feels like its been run over by a bus. My head is so sore that if i touch the side it starts an attack so i can even massage it where the pain is at its worst as it just makes it worst at the moment.

I have sharp pain behind my eye and on the top of my head, the swelling is right up and my neck feels like there is something sharp stuck between the joints as every time i try and move it hurts like hell. Even sitting here typing these notes i am getting pain up the back and into the neck. I constantly feel like there is an attack building and it just don’t want to ease off. I don’t know what to do. If it continues like this for the rest of the day i don’t think i have the strength in me anymore to take another attack. Please God give me a break! I have to go lay down!

One day break and here we go again!

So much for pain free days lasting. I managed to stay pain free all day yesterday even with the cold weather dropping to freezing conditions late in the evening and early hours but as soon as i woke up this morning at about 7am all i could feel was a cold ring around the top of my head. I placed my woolly hat on to try and warm my head up and went and sat in front of the electric fire but it was all in vain as within 20minuets of waking the attack started to build. Well at least i had one days break from them. I suppose it’s better than not having any breaks at all.

Its another freezing cold start to the day. The sun is shining but its taking ages for anything to warm up its that cold today. There is frost on the ground and damp in the air as it was raining last night or early hours as everything seemed soaked and frozen when i woke up. I am having to be extra careful at the moment as i don’t have many injections left to abort the attacks when they come. Its not my doctors fault as they have even prescribed me extra injections so i don't run out but according to the chemist the company that makes the injections are out of stock and are waiting for their new stock to arrive. This is not good!

This happened to me during the summer as well but it wasn’t a problem back then as i was having less attacks than i am at the moment. This time of year is always worst for me so all i can do is hope they arrive soon and ride out the painful attacks when they come. I am still averaging between 6 and 8 attacks in day, most of the attacks seem to be early in the morning and at late night when the temperature drops to its lowest. It doesn't matter even if i keep my heating on full blast and keep the flat hot i still seem to get effected. I had the temperature like a sauna yesterday, the heating was on full blast and i had the electric fire on full as well. At one point i even had to turn off the fire as i was so hot i was sweating whilst sat trying to watch TV. I have to be careful even when it is hot or warm as sometimes excessive heat on the side of the face or head can also set off attacks.

I have identified so many different triggers for my condition its starting to become a problem. Its as if no matter what i try i end up setting off attacks all the time. If i try and stay warm i end up too hot and an attack will come. If i cool down i end up getting cold on the head or the face and that will then trigger an attack also. If i try and carry too much shopping in the left hand and strain my shoulder or if i try and rush about and end up out of breath, these will all set off attacks. No matter what i do i can’t seem to stop the attacks from happening. Its as if the attacks are going to come and no matter what you do to stop them they will still come. Even when i use the injections to abort the attacks it is as if i am only delaying the inevitable a the attacks come back later and seem to be stronger each time.

Well now that i have had my little rant and moan i am feeling a bit better. It is sill very cold so all i can do is stay warm and hope for the best. i am praying the chemist manage to get my injections in before the ones i have at home run out all together. The doctor has agreed to continue my drugs increase with the “Pregabilin” tablets and i am now slowly increasing the dose every week by 25 mg up to a total of 300mg in the morning and 300mg in the evening. i am hoping when i get to the higher dose they start to reduce the attacks like it was when i first started the medication. Only a couple of weeks left and i should get my results for my head and brain scan. I am praying there is nothing serious found or if they do find something it will be simple to rectify as i am still convinced there is something there on the side of my head that is causing the attacks to be worst than what they should be and also causing the swelling on my head to come up all the time especially when i have the big attacks. Fingers crossed!

Pain free at last!

Thank god for a lay in. At least i managed to stay in bed till 7am this morning. I was so tired yesterday i decided to have an early night and was going to turn in around 6pm or 7pm but when i went to lay down and rest my back at about 4.30pm i must have shut my eyes and that was the end of me. I remember waking up and realising it was 11pm so i went to the toilet and then crawled straight back into my bed and fell back to sleep rather rapid. Just goes to show how tired i must have been as i slept very heavily and didn't stir which is unlike me.

I feel brilliant this morning, as if my batteries are all charged and ready for a full day of activity. Shame its a weekend and more to the point its a Sunday, day of rest. I think i’ll sped the day catching up on some house work and cleaning as when i am ill i always let it get the better of me and end up putting it off until i get days where i feel i am able to do it with out causing myself pain or attacks. I am hoping the attacks stay away today! I don’t have any sign of the shadow this morning and my neck seems to be behaving itself. Fingers crossed i should get a pain free day at last.

Its been a while since i have had a whole day where i have been pain free so i am hoping this is the start of a break period for me. I hope the break lasts longer than 3 or 4 days. I just don’t seem to be able to push past the 4 day mark and always end up having big attacks at the end of the period. It’s these break periods that i have to take advantage of as i am able to do all the things i have put off because of the attacks and the pain. So i find myself constantly catching up on things that i have wanted to do for weeks but haven’t had chance because i keep getting attacks all the time. I also have to be careful not to try and do too much as that is just as bad as being stuck out in the cold and surely will set off attacks if i strain myself or cause my head to overheat (just as bad as freezing cold blowing on the face) and will cause the attacks to come back sooner than i want.

The weather is still freezing cold outside and very wet the last couple of days as we have seen lots of rainfall. I think myself lucky as most other areas of the UK have been getting snow. I couldn’t imagine what i would be like if i had to travel through snow everyday. I bet i would be in agony all the time. For now i will stay as warm as i can and will wrap up if i have to go out anywhere. Let’s just hope the pain free period lasts.

A cold start to a long day!

These early mornings are now starting to get to me. I would love so much to be able to have a lay in but unfortunately i don’t seem able to. Again 3am the cold started to get to my head and an attack woke me from my sleep. Even though i took my injection i couldn’t seem to abort the attack. The injection kicked in after 25 minuets thank god but has still left the side of my head very sore and to neck a bit painful.

My eye feels like i have been punched and is swollen slightly. Every time i turn my head i get a pulling sensation over the top of the head. this is where my head is actually swelling up around the scar. There surely must be some thing there that is causing the head to swell up all the time. I always believed if you had swelling it was where the body was trying to repair itself and protect itself at the same time.

They said it can take up to three weeks until i get the results of the scan. I can’t wait as i need to know what’s going on. I am going to ask the specialist if i can look at the scans myself only if just to put my mind at ease there is nothing seriously wrong. If they then say i have to be like this for the rest of my life with a day to day struggle to control the pain then so be it. But i want to make 100% sure before i accept that diagnosis! I am still not convinced!

All i can do for now is try and stay warn and keep the cold from getting to my head. I am going to try and get some more sleep as it is the weekend but it isn't going to be easy with the way my head is feeling. I just know its going to be a long day.

That was a very painful wake up alarm!

Again woken at 3am this morning with another huge attack. This time it actually made my face droop again. I looked like i had had a nasty stroke it was that bad. My eye had swollen shut, it was streaming with water. The side of my face turned bright red where i was in so much pain. It felt so sharp behind they eye you would have sworn someone was trying to scoop it out with a hot poker. Along the top of my head along the left hand side felt as if it had been cut open by a grinder. My neck felt like it had a golf ball stuck between the joints. There was shooting pains down my back causing my lower back to be just as painful and extremely uncomfortable. No matter what i did i could not seem to stop the pain. it just increased to a level where i am not sure if i passed out or not. I know i closed my eyes for a few seconds and things went very quiet. Silent even but then the shooting pain behind they eye brought me back to my senses.

I really hate it when i get attacks like this, its been almost an hour and its only just started to ease off. I took my injection hoping that would abort it but it just seemed to make it worst for some unknown reason. It took my breath away and scared my a little.not even the oxygen worked. Mind you i didn’t really give it the chance i lasted2 minuets and i was in so much pain i could not sit there on the mask and keep still. It was impossible to concentrate on my breathing as the pain was shooting everywhere. behind my eye, over my head and down my back. It was one of the worst of my attacks. These bad ones are what really gets to me. I actually believe it is the time i die or something bad will happen as a result of the attacks.

Well that all i can type for now as my back is still killing me and the cold is getting to my head even though i am sat wearing a woolly hat to try and keep the cold off. I am going to lay down and see if i can get a bit more sleep but i doubt i will be able as i still have a very tender face and a strong shadow feeling like the attacks about to start all over again. It can stay like this for hours and i have to be very careful what i do as i can easily set off another attack when i am feeling like this.

A Frozen start to the day!

I  am not surprised at being woken up early hours this morning. Its is absolutely freezing. I just took a look outside and everything is shining white with frost. All the cars are covered over with the ice and the roads look like they have become sheets of ice overnight. The cold must have been getting to my head as i kept having dreams that i was stuck inside a walk i freezer only to be woken suddenly by a massive attack.Its weird how the body reacts to things when you are not well. By dreaming i was in the cold i woke feeling frozen and had to rush into the living room and turn on the electric fire in order to warm up the side of my head.

As soon as i warmed up my head the pain eased away and the neck stopped hurting. This shows that it is definitely the cold that sets off the attacks in  the early hours. No matter how hot i keep the flat with the heating it still seems to get to me and  i always feel the cold on the top of my head and get a cold ring around the area i get the pain. Its a strange feeling but it is also  a warning that i will have a big attack later in the day.

With the weather dropping in temperature so drastically over the last couple of weeks i have seen more attacks in this period than i have had the entire summer.It seems like everyday i have to deal with something that keeps setting off the attacks. If its not the cold its my neck if its not my neck its my back, i just cant win at the moment.I have my appointment with the doctor later today so am going to ask to increase my tablets and pain killers and get some extra injections so that i don’t run out like i have done in the past and have to deal with the attacks with out anything to abort them.

The only thing i can do for now is stay wrapped up and hope that i don’t get bad attacks today. I have a strong shadow this morning due to the cold so i am sure i will end up in serious pain some time during the day. i am praying its not when i have to go for my appointment as it makes it difficult to go out when i am in so much pain. Lets just hope the day warms up slightly and the shadow feeling eases off before then.

All i want for Christmas is to be pain free!

Yet another early wake up call form the beast! It was about 4.30am when i was woken suddenly, at first i didn’t know why i was awake as i was all in a daze and then the pain in my shoulder started to increase. Just after i felt the pain in my shoulder i then had a shooting pain appear from behind the eye. It was like someone was trying to poke my eye out. The pain stretched from behind the eye up over the top of the head. Along the scar on the top of the head and then down the back into the base of the neck. The pain was so strong to start with it was actually making me feel sick. I ran to the toilet but thankfully i wasn’t sick, all that happened was a couple of retches and then my eye just burst into a pouring stream of water. It was watering so badly it was like i was crying but only from the one eye. No matter how much i massaged my head i couldn’t get the pain to ease.  I then ran into the front room and turned on the electric fire to try the heat trick and get the pain level to decrease. By this time i was in screaming agony and how i didn’t wake up the whole block i don’t know. It was too late to take my injection as i was already in a full blown attack. If i had taken the injection when i first felt it coming on i would have been able to abort the attack but as i was too worried about me being sick i totally forgot about taking it so i ended up having to ride out the attack witch lasted just over an hour, an hour of what i can only describe as the worst pain you could ever feel.

I sometimes wonder if the injections just delay the inevitable, each time you have an attack and take the injection to abort it just delays what i think is reaching the attack peak. I am sure you have the attacks until it gets to the most painful one that the body can take and that's when you get your rest period, after you have had the worst of the attacks. I would like to think i am wrong when it comes to this idea and that you shouldn’t have to go through so much pain but i have this feeling that all i am doing is just postponing the big attack. It doesn’t solve the problem all it does is hide it until a time where no matter what you do you can’t abort it and just have to let it run its course.

I am starting to believe that my attacks are due to a number of different things and not just one cause. The nerve being trapped in the neck is a trigger, my shoulder being over used and starts to ache is also another trigger that sets off the attacks. Also bright light shining in my left eye for too long can set of an attack and of course we have the cold and extreme weather conditions witch are the main culprit when it comes to setting of the big attacks. There may also be other triggers that i haven’t noticed yet but as i said the worst of all is the cold! This is the one thing that can cause me loads of attacks in a short period of time. So far my record stands at 23 attacks in one day, and most of them being big attacks. The worst thing is after the attacks and the amount of pain you get in your back when you are recovering. No matter what pain killers you take or what precautions you have in place you always end up suffering one way or the other.

Another cold day forecast so again i will have to wrap up warm to keep the beast from attacking me again. At least we don’t have snow this morning like the rest of the UK.I suppose that is one bonus living in Cardiff as we are close to the coast so we don’t seem to get snow as bad as the rest of the country. I couldn’t imagine how many attacks i would have to put up with if we were covered in a few inches of snow, i dread to think! Let’s hope and pray the weather improves soon. I have my doctors appointment tomorrow so i am going to ask if we can continue to increase my medication as i think i am starting to build an immunity to the level of drugs i am now taking for the condition. I am hoping with the increase i may end up having a pain free Christmas.

Shut away yet another day!

I had a very strange night last night, i wasn’t being woken by attacks but by nightmares instead. I kept on having this reoccurring dream in which i had a massive problem with my back. What was actually wrong i am not to sure off but i know it was painful and i kept dreaming i was stuck in a wheel chair unable to walk and the wheel chair itself had become stuck so i had no option to get out of the chair. When i did get out of the chair to seek help i would get really bad pains shoot up my spine and then i would wake up panicking and out of breath.This dream came back several times during the night and i must have woken up at least 6 times that i can remember. After waking up this morning, whilst dressing myself i noticed that my back does actually have pain each time i bend and i get shooting pains straight up into the base of my neck. I am now wondering if my dream wasn’t a warning telling my body something was wrong. It’s not as bad as was in the dream but there is enough pain to make me uncomfortable for the rest of the day. i have taken a couple of pain killers and anti-inflammatory tablets that i hope will ease the pain when the start working. It’s strange how the body reacts when it is in pain, sometimes i get warning signs like the dreams and other times you don’t get any warnings the pain just happens and you have to cope with it when it does.

Although the weather has warmed up slightly, compared to last weekend, i am still suffering badly first thing in the mornings. If i am not woken up by an early call from the beast in the wee hours then by the time i do get up i am getting strong shadows and aches and pains all over.  My back seems to be the main culprit when it comes to being uncomfortable. What ever is going on in the head and the neck it is now starting to have an effect on my back and the way i move. The worst times are just after a major attack, this is when i will get the most pain and suffering. Then for a few days afterwards, if i don’t continue to get attacks, i will suffer from pains when i move or even when i am walking. It is like someone has filled my shoes with lead and i find it difficult to lift my feet up. Each time i take a step it is like walking on razor blades it is that painful at times, the shock from the step rides up my legs into the base of my spine and then turns to pain and the pain shoots up the spine out from my neck and straight over the top of my head.

Thank god the chemist managed to get hold of my injections yesterday otherwise i would have had to go the whole week with out anything to actually abort the attacks when they come. I popped into the chemist yesterday lunch time on the off chance to see if there was any news and thank god there was good news! They had managed to track down the order and got them delivered earlier that morning. The “wellness” chemist that i am with are brilliant, i never have  to worry about my medication or even my repeat prescriptions as Phil (the owner) makes sure they are up to date and my medication is ordered. The shop is only 3 minuets up the road so is close enough even for emergencies and it plays a huge part in keeping me calm and not worrying about my medication. Being bi-polar i can sometimes get very irritable and uneasy when i am in a bad period or low period and having the chemist close by and the help at hand when i need it works wonders for my depression.

Another sunny but cold day with the chance of some showers is what the weather forecast predicts. This means there must be a low pressure area coming over the top of the country so i know i will end up having a few attacks as i normally do when the weather is like this. I am amazed at how much the weather has to do with being a trigger for my condition, every time there is a low pressure area or it is cold and wet i am sure to end up with some of the worst attacks i can get. Normally if it is warmer and dry then i only seem to get the shadows or even smaller attacks. All i can do for now is make sure i stay wrapped up nice and warm today and avoid going anywhere in the bad weather. Trouble is it makes me lock myself away all the time and just lately the quality of life has gone out of the window. It seems like all i do is spend time shut away hiding from people and weather in order not to bee seen when having an attack or even avoiding getting the attacks in the first place.

Another annoying early morning…..

This is becoming very repetitive and annoying with yet another wake up call at 4am this morning. I didn’t have a full blown attack it was more like a strong version of the shadow with pain on the same level as tooth ache so it became very annoying after an hour of so. It surely is the cold that is setting them off as it always seems to be when it is at its coldest (early morning) i get the build up and attacks. Now that i have turned to heating back on and the flat has warmed up the shadow feels like it is easing away and the pain has stopped.

The lack of sleep with the last few days being so bad has started to catch up with me as i remember laying down on my bed to close my eyes for 5 minuets and then waking up early hours with my bad head. i must have fallen straight to sleep. Makes a change for me as normally it takes ages for me to drop off. Well at least i got a fair few hours of sleep before i got disturbed again. I have to go up the chemist this morning to see if they have got my injections in. I have now run out so if i do get any massive attacks i am on my own. all i have is the oxygen that is also almost empty and i am waiting for a delivery of that as well. I am prying the injections are there, the last time they were delayed, as the manufacturer didn’t have them in stock, i ended up going 2 weeks with nothing and i had loads of attacks during that period and it was probably the worst experience i have had with the attacks and i don’t want to repeat it not for any reason.

I have my doctors appointment made for Thursday so i am going to talk to the doctor about having an emergency script kept at the chemist for me just in case this ever happens again. i also want to talk about getting some milk shakes or something to help with my appetite as ever since i started this medication i haven’t been eating as good as i should and even go days with no food only drinks. the last time i had the milk shakes i put on loads of weight and was looking very healthy but i have noticed just lately my ribs are starting to show again and i have also noticed food is lasting me ages and when i do actually eat i only pick and end up throwing the rest away witch in my book is criminal as there is enough starvation in the world just to be wasting food.

Scan all done, just waiting for the results….

Yet another early morning wake up call from the beast! At least it has only been one attack this morning instead of loads like i have been getting for the last few days. My neck isn’t as bad as it has been for the last couple of days as i can actually turn my head without getting sharp pains shooting up and down the spine. My back is still a bit painful but that is only to be expected after a large attack.

Yesterday i had my scan at the hospital, it is the first time i have ever had an MRI scan and what an experience it was. It was like being placed inside some kind of futuristic capsule. After they had checked me for anything metal and did their safety checks i was instructed to lay down on the bed with a strange looking pillow that is used to support your head. They then placed a cage over my head and padded the sides out so that i couldn’t turn my head or move about when the x-rays were being taken. They also gave me some ear plugs as the noise that came from the machine was very load and off putting. They then slowly pushed me inside of the tunnel, at this point if you are claustrophobic you would panic as it seems to be a very snug fit inside the tunnel.

When you are laying there you are looking upwards at the top of the tunnel and there is a small mirror attached to the cage so that you can see the operators when they are talking to you. there are speakers inside the tunnel, not for music unfortunately, so that they can talk to you during the procedure. After a while you start to loose your baring's and it feels as if you are standing up looking forwards, it is a very strange feeling. The actual scan took around 25 to 30 minuets as they had to do an extra one as they said i moved slightly during one of them. How this could be i don't know as i couldn’t even move to scratch my nose it is so snug inside the machine. The operators themselves were very professional and friendly. They explained every step of the procedure and helped you to stay calm in case you started to worry about anything. They even give you an emergency buzzer so if you can’t take it anymore or if i started to have an attack all i had to do was push the button and they would pull me straight out. Thankfully i didn’t need it and it was over by the time i started to feel uncomfortable.

It is going to take anything from 2 to 3 weeks before i get the results but at least it is now done i am soon to get some answers to questions i have had on my mind for over 4 years now. I am hoping it is good news and there isn’t anything there that will cause me big problems and if there is something then it is something they can deal with easily and stop some of these attacks i am getting all the time. At the moment it is all guess work as to what is causing them, i do have my suspicions but nothing i can say for sure is the cause.

Another cold day forecast even though we are getting some sun during the day the temperatures are not going above 5 or 6 degrees so it is going to be another freezing cold day. At least when it rains it has been warming up slightly, but i think as the new year comes this rain will soon turn to snow. I am hoping for a mild winter but i think we are about to be shocked especially after all the floods we have been having and the amount of rain that has been falling. Imagine if it was all snow. Then we would be in big trouble. Well all i can do is make sure i wrap up warm and keep the cold off my head. I am going up to my mothers for Sunday lunch so at least i am getting out of the flat and not locking myself away like i normally do. Fingers crossed things start to improve soon as i am not sure how much more of this i can take.