Not the start to Christmas i wanted ….

I so wish it really was father Christmas really did come and visit in the night and i was woken by him rather than the beast reminding me of the pain i am in all the time. Again 4 am this morning i was woken by the beast with yet another big attack. I wouldn’t mind so much but since yesterday i have been getting some nasty chest pain on the left side of my chest and tingling in the arm. The trouble is i get that from the damaged nerve so i can’t tell what is causing it. The chest pain in not normal but can be caused by wind and with my bowels playing up all the time i am convinced it is the wind that is causing it.

NO matter how much i tell myself it is wind it still doesn’t stop me panicking and worrying that it could be the heart as when it comes the heart suddenly starts to beat very hard like its trying to jump out of my chest. It is very similar to a panic attack so makes me wonder if , when i comes, i am just stressing and causing a small panic attack. Not only yesterday i was getting this but again this morning after i had recovered from my attack and prepared myself for a busy day suddenly it started again so i hope it is wind and it will shift soon because its doing my head in.

Not the sort of start i would like for Christmas but that's how it goes sometimes we can’t always be healthy on celebrations and i am sure there are people who are a lot worst out there than me. Christmas is a time for family and that's what i need to concentrate on. Spending the day with my family and having a great dinner over at my mothers house. I can’t wait. i Just have to remember to take it easy as my belly hasn’t been too good for the last week and my appetite seems to be on existent but i am going to try my best today.

I would also like to thank my friends and family for all their support over the last few years when my life suddenly took a sudden turn. It has been a difficult and worrying time and unfortunately my poor body has been to hell and back but i am still breathing and have to be thankful for what i have. I would like to wish you all a very Merry Christmas and a Happy New Year and hope you all get what you wish for and next year will be good to you.

Martyn x

The Mild Weather is not aggravating the Beast…

Although this year hasn’t started as cold as last year did i have still noticed the sudden change in temperature and weather and the head is still very sensitive to the cold weather. My attacks are still in the low numbers so i am pleased that they haven’t become as bad as they did last winter and thankful i am now on the right medication but it still doesn't solve the problem that i feel cut off from the world unable to go out in fear of an attack coming even though i have the injections to abort at least 2 of the attacks. The fear of the attack over powering the injection as it has done on many occasion and then having to deal with a full attack out in the open and cold and watching the faces of others as they see you screaming in agony and the sudden fear on their faces as they don’t know what to do or say.

When you try and explain everything is OK its normal they panic and think you are having a stroke when they see the left side of my face droop and my eye close and swell as the pain becomes so bad the ringing in your ears starts to block out any back ground noise and all you can concentrate on is the pain that's running over the top ofy9our head into your neck and behind the eye, like someone is shoving a red hot poker straight through your head. The attack i get are some of the strongest pain i have ever known and i can’t really explain how bad it gets but i am grateful i don’t have to go through half as much i i used to and wonder sometimes how i managed to cope until now.

With another year slowly coming to an end and another Christmas dinner being planned and shopping like crazy to try and take your mind off things i find it just doesn't help any more. I don’t even feel like going out shopping but i know i have to, i have to make an effort to get my life back in order and stop letting the beast control me with fear of the attacks all the time. I have missed out on so much this last year i have made a promise to myself that i would make up for it in 2015 now that the attacks have reduced significantly. I promised myself i would concentrate on my fishing again and get the web site running smoothly with new stories and adventures and start designing a new fishing magazine as i planned. It gives me a goal to aim for and something to concentrate on and that’s what i need instead of giving in to the pain all the time.

It annoys me also that i have problems with constipation and my bowels all the time as that always makes you feel a lot worst than you are. I have just got over a nasty cold that really nocked me for six and that was why i wasn’t updating my blog as much as i used to. I am now getting over the cold and starting to get back into things. My chest still hurts slightly so i may have a small chest infection from the cold but that will clear with the use of some cough syrup. I am booking a quick appointment to see my doctor on Monday so i can discuss my reduction of medication and start coming off all this medication i am on as that doesn’t help me one bit. I should only be taking what i desperately need and nothing else. Also i need to talk to her about removing this fatty lump next to my spine on the left in my lower back as it is causing me a lot of pain and Discomfort and i can no longer sleep on my left side or my back because of it. Hopefully they will opt to remove it or at least try and break it down with medication but at least they best do something as i cant go on with that causing me problems on top of every thing else.

Well that’s my moan and groan for the day and i would like to wish anyone who reads my blog a Very Merry Christmas and a Happy New Year and hope that 2015 will be a year that brings you all your dreams and hopes. So Have a Good One!

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.