Who needs an alarm clock when you have CH

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

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

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

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

Get ready for the real winter to start!

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

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

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

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

Waiting for a weather break to go fishing…

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

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

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

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

Not in the mood for anything today!

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

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

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

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

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

is snow on its way?

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

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

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

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

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

Looking to be a lucky year…..

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

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

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

Hope the pain free days will continue…

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

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

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

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

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

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