Attacked by the beast but still improving…

You open your eyes and realize that you are awake but don’t feel tired and have to wonder have you slept at all. It’s not until you notice the time on the click, 3am, that you realise the beast is paying you another early morning visit. Suddenly your whole body breaks out in sweat and your bed clothes become soaked and you start to shiver from the cold air hitting your body. Your eye starts to swell on the left side and the pain starts to build slowly behind the eye and on top of the jaw also on the left side. You jump out of bead and rush to get your injection but by the time you have it you are already in full attack. The pain shoots from the top of the jaw, behind the eye socket and out over the top of the head along the left side and into the back of the head where it connects to the neck.

The pain is so bad all you can do is hold your face and pray that it will end soon. You take your injection hoping that it will work as fast as possible and then sit holding your head waiting for the drugs to kick in and the pain to ease. You feel your chest tighten and your breathing becomes heavy as the injections starts to work and you feel a strange feeling along the path of the pain and suddenly as fast as it started the attack is over.  It’s amazing, no matter how many attacks you get you never get used to how they go and how strong the pain level becomes. It actually feels like the pain becomes stronger each time an attack appears.

You would think after suffering from so many attacks i would be used to it all by now but i don’t think you can ever get used to this condition as it is so unpredictable and can come at any moment. It’s not like it waits until you are home relaxing before it comes, you could be on a bus or in a car and suddenly an attack would appear rendering you completely at its mercy. It’s not until the pain eases can you start to do anything or try and get back on with what you were doing before the attack. Sometimes it can take up to an hour before you come to your senses again and other times it can just take 10 or 15 minuets , there is just no telling how long an attack will last until you have one.

It makes it very difficult to plan things or go out for a day out as you just don't know if the beast will show its face. I try and stay indoors especially in winter as the cold is one of the main triggers for my attacks and by staying in the warm and keeping my flat in a certain temperature i am able to reduce the amount of attack i get in a day by a minimum of 50% which is a huge difference from what i normally get,. It does help that i now have the injections and other medication that i didn’t have a few years back and though my life was going to end and it was going to finish me off. When i was diagnosed and told there is medication to help ease the attacks it was like a huge weight was taken off my shoulders. When i was told that there was no cure for the condition and that it could go into remission on its own i wasn’t very hopeful but this year i have seen a huge decrease in the amount of attacks i have been getting and although i still suffer i am pleased with the progress i have made.

I am just hoping that i will continue to improve and manage to claw back some of my life style that i lost when i became so ill. Hopefully now as things re slowly improving i can start to plan some kind of future for myself and start to look forwards to things rather than just worry how ill i am going to be each day. It feels nice to finally get my life back and start to feel like i have some sort of control again. Lets hope this improvement continues. I am just getting over a nasty cold that seemed to take a lot out of me so its time to strengthen myself up again and get back to my fishing as i have missed out on so much this last year i need to get back into it.

Better year than last year but still the beast chases me!

I have to be honest and mention that although I have been suffering from attacks on a regular basis they have in no way been as bad as they were last year. This time last year I wad getting up to 8 or 10 attacks within 24 hrs and I just couldn't cope. I am really grateful of the injections and medication I have been given since my diagnosis as it has helped me get into some sort of rhythm and control with my condition. I know i won't be able to stop them all together and that i will still suffer with this condition until the day i die but at least i can live some sort of life again. For the first time in many years i have actually started planning for the future and the year ahead. I lost out on a lot of fishing last year and a chance t visit some great places around Wales due to my illness playing up and all the side effects from the medication i was on. Now that i am no longer getting the side effects and have started to feel a lot fitter i am planning to start my fishing early next season and try and get in as many visits to different places during the year. I am even planning to return to white acres in Cornwall to take on their specimen lakes once again. 

For the last few weeks i have been struggling with a nasty cold that has turned out to be mild flu and i making me ache all over. It has been 2 weeks almost 3 and only now am i starting to feel a little better and my strength returning. I have been on different flu and cold medication and it felt like nothing was helping and i had to let it run its course and just stay warm and rest as much as i could. It is the worst cold/flu i have had in quite some years so i am going to book a flu injection with the doctor for when the real cold weather returns in January. The last thing i need now is to come down with another nasty bout of the flu when i have already had it. The next time will be a lot worst if i don't have the injections so its another booking with the doctor.

It is strange how i haven't had any attacks whilst i have bee suffering from the cold and flu although it has tried to play up the attacks have stayed away. Maybe my body is feeling sorry for itself as it has been through enough already. I wish that was the case but i know if i go out in the cold the cold wind on the face and in the left eye will surely set it off again and that's something i am trying to avoid until i know i have it under complete control. I was set to start the sodium tablets again as soon as my bowels were a little better but having the cold and flu has postponed it so i am now waiting until i feel a little stronger before i try taking them again. This is just in case of another allergic reaction to the medication as i feel that i wouldn't be able to cope with it whilst i feel weak so i will now wait for the cold to completely shift before trying again.

The last time i tried i didn't get an allergic reaction until after 3 weeks of taking the medication and then after i stopped i was still getting an allergic reaction that after a month of trial and error and a lot of suffering i found out it was the pregabilin that was giving me the allergic reaction and not the sodium tablets/ I am praying that the sodium will now help the head as i have stopped the pregabilin all together and this should help ease the attacks and stop them from starting. When i last took the sodium for 2 weeks i didn't have one attack. Not even a shadow over the period i was on the sodium so i am hoping this is the medication that will stop the beast as it seemed to work last time. Fingers crossed.

A stinking Cold to top things off…..

Now the cold weather has returned and so has the beast The last couple of weeks have been hell with attacks appearing every morning in the early hours waking me instantly and causing me agonising pain. Not only have i had to deal with the beast on a daily basis again but also the small lump in my lower left back just to the side of the spine. It is really causing me some serious pain and when i walk it makes it 10 times worst. I tried to walk to my local super market this morning but the cold was getting to me so badly that i was getting constant sharp pain right up the left side of my back into my neck.

It looks like the beast is slowly building back up to how the attacks used to be last winter. I am still not having as many attacks as i was last year but still enough to cause problems. It’s bad enough i am scared to go out of my flat in case an attack starts whilst i am away from home, you would have thought that the injections would give me some peace of mind but they don’t i still prefer to stay indoors when having a bad head day and let the attacks come and go on their own with out aggravating them. To top things off his week i also seem to have caught a nasty cold or even the start of the flu.

I seem to have a bad chest that keeps getting sore and heavy and bringing mucus up every now and again so i had to purchase some cough medicine alone with some cold and flu drinks just in case as when i get a bad cold or the flu i always get it really bad. I normally end up with such a high temperature i hallucinate and also can’t eat or drink anything as t constantly makes me feel sick. I am hoping that i can shift it this week before the xmas holiday as i don’t really want to be suffering from this cold during my xmas dinner.

I have had this cold now for just under 2 weeks and it doesn’t seem to be getting any better, in fact it feels like its getting worst but they say things feel like they are getting a lot worst before you start to feel better so fingers crossed i will start improving soon as it seems to be making my mood very low. Trust me to catch a nasty cold and cause the head to play up just when things were getting a lot better than they have been for years. Lets hope the cold and flu drinks and medication will kick he cold in to touch and let me get on with things again. So much for winter fishing this year. Every time i have tried to get out i have either ended up in pain or ended up feeling ill. Give me a break.

Attacks right through the week, every morning

Every morning this week so far have been an early start with the beast waking me up at 3 or 4 am and leaving me in agony for hours after the attack. I am getting pain like you couldn't imagine down the left side of my back and the lump that is next to the spine also on the left hand side is hitting nerves and causing shooting pains right up to the neck. This in turn aggravates the head and can sometimes be bad enough to set off what i call secondary attacks that can sometimes last 2 or 3 hours before the pain subsides. It crazy how nerve pain is so sharp and so painful its like having bad toothaches and abscesses all at the same time but inside where it cant be touched so you cant even rub it or massage it to ease the agony.

Each attack starts the same with a sharp pain above they eye and above the jaw on the left side of my face followed by a sudden break out in sweat. Then the sharp pain comes behind the eye causing it to swell and close and the amount of water that runs from your eye is crazy i can fill a small glass in minuets. As the pain shoots over the left side of the head it causes a ridge to swell up along the path of the pain and then it travels into the neck making it feel like there is something sharp trapped in the bones and each movement is agony and grinds. The head is the worst part of the condition as it makes you want top smash your head against the ground to open it and release what ever is inside causing you all this pain and agony and this can last anything up to an hour and half.

Its really hard to stay focused on the positive things when you are having these attacks and especially when you get the really bad days where up to 8 attacks can come one after each other making you wish that you was dead just so the pain would stop. I am lucky so far this winter as the temperature has dropped and my attacks have stayed steady with only around 2 or 3 days a month being very bad with over 3 attacks but most days are between 1 and 3 attacks and i have been managing quite well. It was only this week they have suddenly become regular again so i am hoping its just the pain in the back causing it to play up and not the beats returning for yet another winter of more pain.

I am so glad i did my Christmas shopping early this year especially after reading about black Friday hitting the UK and the craziness at the superstores with fights breaking out and being so packed you just cant move. I wouldn’t be able to cope with the crowds. Could you imagine me having an attack whilst stuck in amongst the madness inside the supermarket. They really need to get a grip and start the sales earlier in time for Christmas so there isn't such a rush and problem with people arguing and fighting in the store over discounted items. OH well, another year almost at an end and another one just around the corner and i am hoping that my head will improve and keep on improving as it has been over the next few years and maybe go back into remission so i can live a normal life and not one of a hermit.

More attacks from the beast but still fighting …..

It doesn’t mater how many attacks i have have or for how long i will end up suffering from this condition, no matter what i will never get used to the level of pain it brings when having an attack. Again 3am this morning i was woken by the beast with yet another attack that lasted hours and ended up making me feel really ill all morning and it doesn’t matter if i take the injection to abort it as when it is this bad it even over powers the injections rendering them useless. I am hoping it is just down to the frosty morning we have been having and that it will improve again soon.

I am so used to having the attacks now i wake up expecting there to be pain and am shocked when i open my eyes and there is no attack within seconds of me waking up. Most of the time when i have an attack first thing in the morning i don't have to wake up as i am wide awake as soon as i open my eyes. There has been times where i have dreamt that the attack is starting and that has woken me up in time to take the injection and stop the worst of the attack hitting me before it over powers everything. It’s amazing how the body reacts and adapts when it has to get used to something like these attacks happening on a daily basis.

I have been keeping my flat at a warm temperature all day and all Night. I have been keeping the temperature in the 16 to 19 degree range so its not too hot and not chilly so it doesn’t effect my head and thankfully it has made a huge difference so far this winter. I know we are only at the beginning of winter but it seems to be stopping a lot of the attacks from appearing. I have noticed if i go out in the cold then it starts to play up as i feel the draft on the left side of the face. As the weather starts to get colder i will have to wear a scarf or something to protect my face so that the icy cold wind doesn’t set off any attacks.

My back is still causing me agony every now and again as the fatty lump at the left side of my spine seems to be pushing on nerves again. I wish they would just take the damb thing out but i am waiting to here on what they want to do. I have my appointment on Wednesday with my share care nurse, we will be able to discuss everything that has been happening to me this year and what plans we can make to try and improve things and get the treatment i need. I can’t really complain as they have been good to me but they just seem to take ages to make any appointments for you when you are in a lot of pain which seems a bit strange. Other than that my treatment from neurology has been amazing and if it wasn’t for them diagnosing me and getting me on the correct medication i just don’t know where i would be today.

Wake up call from the beast again…..

Another wake up call from the beast at 2am and 3am this morning followed by an hour of agonising pain and wishing it would just stop or finish me off. Some times the pain becomes so bad you pray for it to end and all you want to do is smash your head against the floor or wall to crack it open and release the beast so it stops attacking you. NO matter how many attacks i get i can never get used to them. The winter weather is here and every day it is grey , wet, damp and cold i get problems with the head and neck. NO matter what preparation i do i just can’t stop the beast from showing his face.

It’s crazy to think there is nothing they can do to stop this from happening and that someone should have to suffer so much in this day and age of technology and advancement in medicine. They have almost taken care of Aids and slowly finding cures for different cancers yet they can’t find a cure for CH and the cluster attacks people get. Every time the beast comes it makes me feel sick as a dog and the ringing in my ears just becomes so loud i can’t even hear the TV when watching it.

When i was first told it was an incurable illness and that i would have to take strong medication and oxygen for the rest of my life i thought they was exaggerating the issue and that it would ease over tie where in fact they were right and i have git slowly worst even though i don’t get as many attacks as i did before i am getting them so strong that i jus can’t cope. I managed to get down to one a week with the medication over this summer but then suddenly ended up having an allergic reaction to the pregabilin tablets and didn't know why it was happening. It took me ages to find out what was causing it all and now i have found it and changed back to sodium valproate i am starting to get attacks again.

I know the attacks coming back have nothing to do with the medication and is in fact a reaction to the change in weather that i normally have every year around winter as it gets colder. Especially on those frozen morning or if it snows then i am in for a rough time. I wear a hat and scarf to keep the cold away from my head and face but even that doesn’t stop all the attacks from happening so i am just grateful that i am currently only getting 2 or 3 attacks a day. Last year i was up to 8 or 10 a day and as you can imagine it is like living in hell. Lets hope it continues to improve and the beast doesn’t get control of me again. I think the medication is working and helping to suppress the attacks as i can feel something trying to stop the attack from building but sometimes its just so strong it over powers everything including the injections.

The Beast is back….. Winter is here!

Again i have been neglecting my blog web site not that i haven’t wanted to update what's going on but more to the fact that i just couldn’t sit at the computer due to pain shooting down the left of my back from the neck and the head as the beast is back with vengeance. I have been woken every morning for the last 2 weeks with attacks from the beast. After having such a long period of no attacks and thinking it was going back into remission i actually had forgotten just how bad and how painful these attacks can get at times.

The pain starts just at the top of the jaw and behind the eye and within seconds of waking up the pain becomes so strong you want to scream. your eye just waters and you can’t see out of it and all over the left side of the face feels like it is swollen and on fire. The pain then increases to a level that you start to believe you are going to die and even welcome death just for the pain to stop. It shoots over the top of the head on the left side leaving a swollen ridge and into the back of your neck and right down the spine.

No matter how many attacks you have each one is different in the level of pain you get, some times you can ride the attack out and although it can last over an hour you can put up with the pain but there are times where it becomes so strong you just don’t know how the human body can cope with all the agony and sharp pain constantly ripping into the left of your face and behind the eye.  I am grateful for the injections i now have from the specialists as they are the only thing that can abort an attack but sometimes even these injections don;t work and all you can do is wait until the pain stops.

I am hoping it is just because we are now into winter and its the early morning cold that is kicking them off and that after a while i will get used to it and they will ease off again but i know how the beast can be sometimes and it is looking like i am in for a very painful winter. The cold seems to be one of the main triggers for my condition and all i can do for now is pray that it holds off or a while. Even now whilst typing the blog i can feel the shadow building and the threat of another attack lurking around the corner. God help me!