The Beast is back, Winters knocking at the door

Its not really a surprise that i have yet again been woken by the beast with a couple of nasty attacks this morning. The first attacks wasn’t too bad and i managed to get back to sleep as it was only 1.30am but the second attack, at 3am, was one that reminded me how painful these attacks can be. Again i just burst into a cold sweat and my clothes were soaked there was that much coming off me and although i took my injection it still managed to over power it for about 30 minuets before the injection took hold properly and aborted the attack. It has now left me with a very sore neck and a really bad back.

I am becoming more and more convinced every day that my back problem is down to what ever is going on with the nerves as i can actually feel the nerves swelling up in the neck and at the top and bottom of the spine. Its a strange feeling like you have a piece of elastic stretched between two points causing pressure and uncomfort and not to mention a lot of pain. When the back is really bad, like this morning, i get strange weakness in both arms and cant hold them up for long periods of time and have to drop them by my side so to rest the shoulders and the upper arms where the ache and pains come from. the same goes for my legs when the aches, pains and weakness comes all i can do is sit and rest them for a short while and wait for the strength to come back.

With all the strange things going on with my walking and my legs feeling like lead i am starting to feel really run down. When i walk up to the chemist i get some strange things happen like my bum goes completely numb for around 10 – 30 minuets and then eventually comes back to life. The same happens with my legs and if it happens when i am walking it becomes difficult to take a step and i have to stop somewhere and sit down for a while until the numbness and pins and needles stop and life returns to my legs so that i continue my journey. one thing is for sure is that i am getting worst as time goes on and i can’t wait until i get my blood results to see if anything shows up and maybe get some answers.

Thanks to this personal blog i am able to look back over the time line and see how i have been coping and how things have steadily become worst. the improvement in my head attacks seems to have stopped and at the moment are no worst than they were but also no better. This is down to the failure of the Verapamil treatment and the allergic reaction i had to the tablets. My bowls are now all messed up due to what happened and i now suffer with bad IBS. My appointment with the specialist had been delayed yet again as i mentioned in an earlier post. I have tried to chase it up but every time i ring there is no one in at his office so i have left numerous messages on his secretary's telephone asking for them to get in touch with me urgently as i am suffering but they still haven’t called me back.

With the weather being so unpredictable at the moment i know i am in for a rough time with my head and the attacks as they have started to become stronger than the ones i was having during the summer. For the first time in a long while i woke with the cold band feeling around the top of the head witch means the temperature is starting to drop during the night causing the top of my head to get cold and setting off the attacks. I am really dreading winter and what it has in store for me. i don’t know if i can go through all the pain and agony again as last winter was bad enough and i had help with medication towards the end and it still didn’t stop the attacks. i am praying the hospital pulls its fingers out soon and i get my appointment so at least we can try another medication to see if it helps with the attacks and help me get through the winter period.

Attacked again by the Beast at 3am ……..

Yet again the Beast has decided to pay me a visit in the early hours waking me up with a massive attack. Also i actually dreamt the pain coming on. I don’t know the actual details of my dream as it was very sketchy but i know at one point i was dreaming about the problem i had with my neck and telling someone i had an attack about to start and just as the attack was beginning i woke up into the start of an attack. I jumped out of bed and ran into the living room to take my injection and be near to the oxygen in case i needed it. Thankfully the injection took effect after around 10 – 15 minuets and aborted the attack. I could feel that it was going to be a large one and sometimes the injection just gets over powered by the strength of the pain but in this case i was lucky.

I am not surprised i had an attack as i normally have attacks the day after fishing and thanks to my mother we managed to get in an afternoons fishing at one of the local coarse fisheries. Just before lunch, yesterday, i was talking to my mother on the blackberry messenger when suddenly she said “do you fancy a couple of hours fishing?” well i jumped at the chance and within 20 minuets we was on our way to the lake. John my friend also joined us for the day as well as Brian my step father and we had a great afternoons fishing in the sun as the weather turned out really nice.

Winter is only around the corner and the colder weather is about to hit us so i am praying i get to see my specialist really soon as i am dreading what the winter brings. The cold is the main trigger for my attacks and the onset of the beast and for some reason it is the worst time of year for me. I know i will get lots of attacks every day and don’t know if i can cope with another winter like we had last year. I was getting up to 10 massive attacks in a day and on some occasions i can honestly say i had double that amount. All the attacks were strong ones and it was rare to get the milder attacks during the colder months.

I was walking around with a woollen hat on my head and a thick scarf around my neck just to keep the cold out and stop the attacks from happening. Unfortunately the hat and scarf wasn’t enough to keep the beast from attacking me and i ended up trapped indoors all the time with my face close to an electric heater just to stop the attacks from building. i know this year should be different as i am now on the medication and the Pregabilin does work to a certain extent but extra help is needed if i am to manage the attacks and keep the beast tamed. All i can do for the time being is pray and hope that i get my appointment soon.

My back is still playing up and i am still having problems with my walking and movement. I have to wait for the results of the blood tests to find out what is going on but its hard not to worry all the time as it is a scary thought suddenly not being able to feel your legs. lets hope its something silly like a trapped nerve that can be rectified quickly and not what my mother and the doctor fears it could be. If it does turn out to be arthritis or the sciatic nerve then i am going to need to start thinking about getting a ground floor flat so i don’t have to struggle with the stairs every day. Let’s hope it doesn’t come to that.

The beast builds its strength for another attack..

It starts with a small twinge in the neck then suddenly your gum or tooth starts to hurt or become sore on the left side of the mouth. You then feel like there's not quite something right with your neck and you keep bending it like your expecting the bones to crack. The twinge in the neck becomes stronger and the soreness in the mouth becomes unbearable and then suddenly the pain shoots from the top of your jaw on the left side up the side of your nose and behind the eye. The eye suddenly feels like someone is trying to push a hot poker through it and that's when the pain increases yet again. The pain the spreads over the top of the head on the left side and down the back into your neck where you were getting the twinges. It makes you feel like you have something stuck between the joints in the neck and is extremely painful. The pain reaches levels that you just can’t explain and you are screaming to god for it to stop. The pain just continues making you sweat but not just a small amount. oh no! you pour with sweat like someone has turned on a tap and your clothes become soaked. As the pain increases it makes you hear ringing in your ears and the more the pain the louder the ringing in the ears. Sometimes it can be over in about 10 minuets but mostly it will last anything up to 2 hours but mostly around the hour mark. That;s how the attacks build when i have a bad head and its not just one attack its several per day.

How i have managed so long with these attacks i just don’t know. My health has been awful since the attacks started and has been steadily going down hill ever since i had the problem with one of the medication the doctors gave me to try. I have suffered with back problems, with bowl problems and problems with my walking whilst all the time getting the attacks on a daily basis and having to try and deal with them. Each time i see the doctor she just doesn’t seem to know what to do or what is going on, everything we have discussed seem to all lead back to the attacks and the condition i have. Something is making the attacks worst than they should be and something is causing me all these problems with my back and my bowl but we still haven’t found what it is. I have had a load of blood tests to add to all the x-rays and scans i had in the hospital when i was rushed in but still nothing is showing. I haven’t had a day with out pain for almost a year now and it is really starting to get to me.

I am lucky in one respect as i have my computer, internet, websites and fishing to try and keep my mind of my problems but it doesn’t always work. Each week i try to improve my web sites and create new features plus write up any stories i have about our fishing trips but the is only so much you can do. I a,m now finding myself struggling to find things to occupy my mind. It doesn’t help with my stupid mood swings due to the bi-polar in me. one minuet i am low and the end of the world is coming and the next i am hyper and looking for things to do running round like a chicken with its head cut off except i haven’t been able to this time as when i try and go out and walk a distance i am stopped in my tracks by the pain in the back and the legs going dead or turning to lead all the time. I just wish this wasn’t happening to me!

“There are thousands of people out there that are worst off than me that like me have to experience pain every day of their lives as they struggle with their conditions”. That’s what i keep saying to myself over and over again. I should be grateful for what i do have and what i can do where there are so many others that don’t have the things i have and can’t do the things i can do. Some how i have to get out of the rut i am in ad try and get things sorted so i can live a comfortable life with regards to my health but i just can’t seem to find the strength anymore. My mum and step father have been god sends since all this started to get bad and my health started to go down hill. They have been trying to include me in the fishing trips they go on and help me get out of the house other wise i would stay shut away all the time. Too scared to go out in case of an attack or the back goes funny and i can no longer walk. Always frightened of the pain and the attack of the beast when it comes.

All i can do for the time being is take each day as it comes and to try and stay in a positive mood no matter how hard it is. I also need to continue with my fishing and start going on a few more trips as i want to go and visit different lakes and rivers and fisheries around Wales. My fishing is the last and only sport i can take part in due to my health so i have to grab hold with both hands and not let go, so to speak. If i concentrate more on my fishing and the trips and venues we will go to then maybe it will help me keep my mind off the pain and illness that is shadowing me all the time. I have some good friends who help me out including John Rees who, over the last year, has become a very good friend as he understands my condition and the attacks i have as his daughter, bless her soul, has a similar problem due to a brain tumour that she has to have an operation to remove the tumour that will leave her having to learn her speech and walking all over again and will give her attacks similar to mine on a daily, weekly or monthly basis. Its because of John and the thought of his daughter having to suffer like i suffer that has given me a new strength. Just to think someone so young has to go through all this. I have the strength of an adult and understand what is going on when she doesn’t know what is happening and why she has to suffer. My prayers are always with her.

A Break from the Beast but everything is really getting me down…, can i cope?

Although i was woken by the beast yesterday and had a few smaller attacks during the day i managed to get an early nights sleep and slept through till this morning. I didn’t get a wake up call and i feel so much better for it. I am still having problems with my back and with the IBS playing up causing me terrible wind. Yesterday as i was walking to the supermarket each step i took i passed wind so you can imagine. A little embarrassing when you don’t have control over it and if you try to force it to stay in you will end up in pain. There was a couple of time i left a nasty smell behind me in the isles when shopping watching couples looking at each other in disgust thinking it was one of them that had dropped their guts.

After all this time suffering pain from wind i have now found something that puts a stop to it straight away and that is liver salts. Andrews Liver Salts has been around for years and is used for constipation and stomach upset so why i didn’t think about it earlier i don’t know. When i mentioned it to my mother she had the exact same response as me. She couldn’t believe we didn’t think of it earlier but that’s how its goes sometimes. The simplest of solutions to solve a load of problems. It’s such a shame we can’t find a miracle cure for my head and back. I am now more convinced than ever that my back pains and problems are down to a trapped or damaged nerve as i have had some really strange things going on. My bum going completely dead so i can’t feel it. My legs loosing feeling and getting strong pins and needles when the feeling comes back. Problems with my walking and my legs feeling like lead also if i carry a bag of shopping in my hand then i get pulling in the back and the bum cheek.

I can’t wait for my blood test results as maybe they will find what is happening to me and why as time goes on i am getting worst and things seem to be increasing as more and more problems are starting to appear. I know there is something going on due to the problems and pains i get and i also know there is something going on inside me. Something that is effecting my bowls as these problems are just not normal. I know people can develop IBS as they get older but they usually have signs of problems during the years leading up to it. Mine seems to have come out of the blue.

Fingers crossed we get some answers soon as i am struggling with the Bi-Polar and the depression. My mood swings are starting the get severe and i am struggling to cope with the smallest of tasks. I can feel my self dropping rapidly and the grey mist is starting to descend. I can’t cope with an extreme low at the moment as my moods are too low as they are. I don’t want to be treated like a fruit cake like the last time my mood became this low. They ended up putting me in hospital for my own protection when all i needed was my medication and help to cope with the issues that were bringing me down. This time round it’s all down to medical issues and there is nothing I can do to change these things.

The only people that can help me are the specialists who know about these problems and getting to see them can take months and in some cases years. I am still struggling to get my next appointment with the head specialist from Neurology as they have cancelled the appointment i got last week after chasing them up for 4 days. Now i have to start chasing him again and try and explain how urgent it is i need to speak with him. As for the specialists who are supposed to be dealing with my back i am still awaiting my initial appointment. They sent me a letter a few months ago saying that i was on the waiting list and i had to ring them to confirm that i still wanted to be seen. i was then told that as soon as an appointment is available they would contact me by post but i have received nothing for months and it is now almost a year i have been waiting. What more can i do……?

A wake up call from the Beast, its all starting to become too much to handle…..

Again i have been woken by the beast with an attack at 3am this morning and had to ride it until about 4.15 am. i would have taken an injection but at first it only seemed like a small attack but after about 15 minuets i was shocked as it turned into a massive attack and had me screaming in agony. It was then too late to take the injection as it doesn’t seem to work if you let the attack build to such a strength. I have been woken many times by the beast in the early hours but for some reason this time i actually dreamt that i was in pain and having an attack before i actually woke and found that i was having an attack for real.

I had my blood tests yesterday to find out why i am having so many different problems. I am convinced it is down to the nerves trapping causing me the back pain and problems with my walking but as to why my bowls and IBS is playing up so badly all the time is still a mystery. I walked up the chemist the other day to have a nasty surprise when i was half way there my legs suddenly started to feel numb as if they were about to go to sleep. It made walking extremely difficult and scared the living daylights out of me. The pain in my back was as bad as usual but why the legs whet funny i haven’t a clue. By the time i actually got to the chemist i was in a right state. Sweat was pouring off me, i was completely out of breath and i was dragging my feet as i almost collapsed on the chemist floor.

Thankfully the chemist came to my rescue and grabbed me before i fell and sat me down on a stool to recover. Within about 10 minuets of getting there and sitting down i found the feeling come back to my legs and i was fine again. I have been getting some very strange things happen to me ever since the attacks began but nothing like my legs going dead before. I have also been getting really bad problems with my back and also my bowls as i seem to be continuously producing wind and seem to be constantly constipated at the moment. The pain in the back is always at the bottom and spreads into my bum cheeks making it very uncomfortable to sit for any length of time or even stand. The only time i get relief from it all is if i lay on my back or on my right side.

Well i now have to wait a week for the results of the blood tests and will have to book another appointment with the doctor to see what is going on and what can be done to help me. My appointment with the specialist is still unknown as they cancelled my new appointment due to unforeseen circumstances and they said they will contact me shortly with the new date but i think i will end up having to chase them again. i am hoping something can be done soon as i don’t know how much more of this i can actually take. its bad enough suffering from the attacks all the time but to have back problems, walking problems, bowl problems and problems getting seen by the specialist is all starting to become too much for me. I have noticed my depression is back and is starting to get bad as i find myself in tears most evenings not knowing why i am actually crying.  All i know is i need help!

So much going on I don’t know what to do any more, God help me!

So far i have been lucky over the last couple of days as i have only had a couple of attacks but have run out of my injections. the chemist is having problems getting the amount i need from the manufacture. For some unknown reason they are reluctant to give out so many injections as they class it as a hospital dose. It sounds crazy especially when the order is backed up by a script from my doctor. They have told me they should arrive by this afternoon so i am hoping i will be able to make it through the day with out any more attacks as i was woken by the beast at 4am as it is. It is murder having to deal with an attack and ride the pain for the full length of time. Sometimes it can last for 10 minuets and other times it can last anything up to 1 and 1/2 hours. When you are in that much pain for that amount of time all you want to do is die. You just want the pain to stop no matter what it takes.

It shocks me that i managed to put up with these attacks for so many years and most of them with out the help of the injections and medication. I used to ride the attacks for the full amount of time on a regular basis and have developed some ways of dealing with the pain. One way is to massage the top of the head vigorously as if to create static. this seems to help calm the pain to a manageable level. Another way is using my electric fire and place your face close to it so the heat level matches the pain level (this is not for the faint hearted and i don’t recommend you try this unless you know what you are doing as you can cause serious burns) as soon as you match the level you hold it for a couple of minuets and then slowly move away from it.  As you move away and the heat goes down so does the pain. i know this technique sounds crazy but it actually works, why i don’t know, but it does.

I have an appointment with the doctors on Thursday morning to have my blood tests done. They are checking for gout, cholesterol and for the joints to see if i have arthritis or something similar that will explain why i get pain in the back and the legs turn to lead when walking. On Monday afternoon i was walking up to the chemist to find out what was happening with my injections when suddenly the pain in the back became stronger and i started to loose the feelings in my legs. It felt as if they were going numb just like my left arm keeps doing when i trap the nerve. Talk about a scary experience. I struggled to get to the chemist and even he was shocked to see the state i was in and almost ended up calling an ambulance but i told him i was ok. I sat down for about 10 minuets until i could feel mu legs properly again and off i went home.

I have some strange things going on with me. Not only do i have to contend with my head and the attacks i get but also back pain, problems with the bowls and trapped wind travelling around my internal organs causing agony, trapped nerve in the arm, problems when walking and my legs going numb. If i was a car they would have scrapped me by now and if i was a dog they would have put me down a long time ago. i don’t know what to do any more. I keep on complaining to the doctor but it seems like nothing is happening as it is taking so long to find out what is going on with me. i am hoping the blood tests tomorrow will give us a clue as to what it is causing all these problems. trouble is i have to wait another week for the results and up to 2 weeks for some other results the doctor mentioned but i can’t remember what they were.

The Beast, The Back, The Neck, The Muscles…what next…….

The Beast is back with vengeance as this morning i had one of the strongest and biggest attacks i have had to date. Not only did i pass out from it but found myself coming round laid on the floor with a pile of what i can only assume is bile or acid from my stomach as i can feel burning in the back of the mouth and a pile of sick on the floor where i was laid out cold. The attack started from behind the eye and shot over the head as usual but i noticed that it was a lot stronger than normal and felt quite light headed and sickly and as i moved to try and ride out the pain it was lights out. When i came round i was on the floor with a pile of vomit near my head. So i can only assume that i was sick when unconscious.

The pain i have been getting in my back muscles and up and down the spine is now constant and the pains i thought were wind at the top of the back are actually muscles cramping every now and again causing me pain and uncomfort. I have tried everything to help ease the pain by resting and taking it easy. After returning from my fishing trip on Saturday i decided to spend my time resting al the muscles and try and take things easy. Unfortunately i have run out of my Imigran Injections that help to abort the attacks when they build so for the last couple of days all i can do is ride them out and hope for the best. I have had a further 3 big attacks this morning and can feel more building as i sit and type.

Its times like this i actually wonder is there anything anyone can do to help me or am i going to have to be like this or worst for the rest of my life or until i have one attack too many and i wont come round from the last attack i have to endure? It’s a scary thought having these attacks all the time and not knowing whether it could actually kill you or not. No one seems to know as it is such a rare condition. I have tried to chase up my appointments with the only person that does know, my specialist, but can’t seem to get an appointment as they keep on being cancelled or moved.

To me it seems like i am getting worst as time goes on and now the doctor is investigating why i am getting so much trouble with my movement and my back. She has ordered a full lot of bloods done and tested to check for gout, high cholesterol and problems with my joints. All i know is that it’s now becoming painful just to be sitting in one position so i have to constantly change position and stretch my joints and keep them moving each day. I sit there exercising my legs or my arms so that they don't just start aching from being sat still for too long. I am just hoping that all these problems don’t start giving me even more attacks than i am getting already. I am not sure i can cope with it all.