The Beast attacks and the pain is spreading…

Not only have i been woken by the beast twice this morning in the early hours but now the damaged nerve not only attacks the left side of the head but has also spread into my left shoulder and on my back on the left side and my chest at the front on the left side making me feel like i am having a heart attack when it becomes bad. It doesn’t help that when i get the bad pains and the chest starts i become stressed and start to worry about it making it ten times worst than it actually is. I am also producing wind from the bowels as the IBS starts to play up due to me stressing all the time. I can’t seem to win.

Just when i got things under control and was feeling a lot better as the problems with my bowels seems to have gotten better on its own, possibly due to the medication reduction, also i am no longer getting bad back problems and it has gone back to only getting the walking difficulties once in a while instead of every day. As to why it all blew up out of control i am still no wiser but at least its starting to get better and i only have to deal with the beast and the attacks. I think one illness at a time is enough for anyone to deal with.

I have noticed over that’s few days that the early mornings are getting colder and colder and that is probably why i have been getting so many wake up calls from the beast just lately. i have tried to keep the flat warm between 15 and 19 degrees so it helps to keep the attacks fro appearing. The trouble with this is that it costs a blooming fortune to run the gas constantly so i tend to heat up the flat during the evening and switch it off during the night. This ends up with me being woken in the early hours as the temperature drops and my head feels the cold resulting in an attack or at least strong shadows waking me up so i turn the heating back on.

By using my heating all the time the cost of running the gas has tripled. During the summer months i am lucky to use £5 a week as i am only heating the water i use for washing and bathing, as the autumn started this increased to £10 a week. Now the winter is coming and also the freezing weather this will now increase again to £15-£20 a week just to keep the flat warm enough so i don't get continuous attacks during the day. That’s nearly £80 a month or £320 a quarter, WOW! That’s expensive.

As i am a dual fuel customer of British Gas i have contacted them to see if there is any help they can offer or a discounted cost for disabled people. They do have schemes available for the disabled as my mother is on one as she is also disabled so fingers crossed there is something they can do as i just can’t afford to keep the heating going at that cost. If not i will just have to suffer the early morning attacks and have days where i will have attacks all day long , once again! All this couldn’t happen at a worst time with all the fuel companies increasing their prices and many people complaining that they can’t afford the cost of heating their homes during the winter months. I am just praying i don’t end up like these as i know i will just end up suffering. I don’t know if i can go through another winter like the last one as i was having so many attacks u really don’t know how i got through it all and am still alive.

These early mornings are really taking their toll on me as i am feeling like the walking dead every day just lately. I am having restless nights due to the pains in the neck and the shoulder making things very uncomfortable. While i was getting the wind problems i was getting very little sleep and now even though the wind and bowel problems seems to have calmed down i am still having restless nights. I have tried everything from Vallium to strong sleeping tablets and apart from making you feel groggy all day long they don’t help at all and are a waste of time taking them. The mirtazapine tablets i take for my depression and b-polar are supposed to help you sleep and help you have a natural sleep but i have been on them for so long they no longer have that effect on me.

I was planning on going fishing today as i have been missing it like crazy but with my head and neck they way they are i have had to delay my fishing trip until Friday. I am hoping on Friday to be going Pike fishing with my mate John at our local lake. A few other fishermen have been getting some nice pike from the lake this year so i want to give it a try and see what we can catch. We should get something, either Perch, Pike or Zander (if they are in the lake) are all predators and all go for lures and plugs so it gives us a great chance to try out some of the new lures and plugs i won in a competition from Total Outdoors during the summer. I will also have to write a review of the products we use and the fish we catch using them.

Also a bit of good news as well as my web site “Fishing Adventures Wales” has really taken off and we are getting loads of visitors to the site reading the different adventures we have been on. We have now decided that next year we will be making a film about starting up Carp fishing and we will be filming at different locations around Wales as we visit the different venues. Then at the end of the year we will edit all the footage we get and put together the film so we can release it on our site and in Facebook ready for next Christmas.

Battling with the Beast, but feeling more positive…

The last few days have been hell on earth as my head hasn’t stopped playing up. Not only am i woken every morning in the early hours by the beast but the attacks continue through out the whole day also. This makes it very hard to get on with every days tasks and especially doing anything i want that i have planned, i have to put everything on the back burner, so to speak, as dealing with the attacks becomes a full time job. The attacks have been so bad it has left the left side of my face and head constantly swollen and the neck feeling like it is being ripped open. Every time i move my head and neck it cracks and feels like i have something trapped there. The pain becomes so bad it even over powers my injections but i also know if i didn’t have the injections i would be even worst than i feel at the moment.

The trouble with having attacks all the time is it leaves you feeling weak as it seems to take all your strength just dealing with the attack. You constantly feel sick and even eating food seems to aggravate it. The main trigger for the attacks is the cold and with the temperatures dropping over the last week or so i have seen a huge increase in the amount of attacks i get confirming that winter is finally here so the freezing weather won’t be too far behind. I am dreading when it gets really cold as i will end up in agony every day of the week with very little time to recover as i tend to only get very seldom breaks in the attacks. I have taken all the precautions i can take in order to keep the cold off the head but even wrapping up warm sometimes defeats the objective as the heat can also set of attacks now and again. The condition is so unpredictable its very difficult to prepare yourself for what is about to come. I am just hoping i get to see the specialist again before all the freezing weather reaches us.

On a happier note my bowels seems to have calmed down again and i am getting back to normal (if there is such a thing). I don’t seem to be creating as much wind as i was before and i am no longer in constant agony from being bloated and unable to go to the toilet. I am not getting so many pains in the stomach and the back as i was before so fingers crossed what ever was causing it has gone and i am now on the mend. It could also mean that the doctor at the hospital was right and it was definitely the medication side effects that was causing me all the problems. I have started a reduction in my Pregabilin medication from 300mgs down top 200 and then to 150 twice a day. I am still n the 200mgs mark at the moment and can already feel the difference as the body is getting withdrawals from the medication and when i try and sleep at night i am getting cramps in my legs. It just goes to show how much a medication can have a hold on you. Its not until you start to give up the medication you realise just how much your body needs it. I am still getting a little wind build up now and again and have one or two bad days per week with regards to my bowels so i will continue to reduce the medication to see if it makes a big difference and maybe the bowel problem will then go for good.

I can’t believe i have had to wait just over a month for my appointment with my normal doctor as the surgery is so busy it seems like everyone wants the same doctor. I don’t mind the other doctors if it is an emergency but when it comes to important issues i prefer my normal doctor as she is the only one that knows the full extent of my problems and my full medical history. I am hoping that by the time i have to see here at the end of this month i will have good news and will be able to put half of these problems behind me. I have to admit my mood is a little more positive just lately and despite all the doom and gloom and problems i have been getting i have managed to keep my chin up and ride the depression. Sometimes its very hard and difficult as you tend to forget you suffer with depression and end up thinking that the low feelings are normal> Also not having my fishing to fall back on and get me out of the flat has been effecting me the last month so i am going to make the extra effort to getting out this winter and see if i can do a bit of winter predator fishing and catch myself a nice big Pike.

Learn to live with the Beast and accept the side effects….

The beast is really starting to annoy me with the early morning wake up call at 2 or 3 am each morning especially when its cold. Why can’t its starts or come at 7 in the morning i don’t mind so much as its time to get up then anyway. 3 times it started to build and then no attack but on the 4th time it turned into an attack from hell. The pain was so string it over powered my injections again and i had to ride it out and have been doing so for the last hour and 15 minuets. My head is so sore that each time i touch it to rub it better it sends electric shocks from my neck down my back. The neck feels like i have something trapped in the joints again and my shoulder feels like someone has been trying to pull it off from where it joins the torso.

Winter is now here and the beast is back with vengeance. I am praying that when it turns really cold i will have seen the specialist by then and we will have some other trick up our sleeves, in the way of medication, that will be able to deal with the beast and the attacks when they come. The colder weather and freezing cold mornings is the main trigger for my attacks so by the time this weather comes i want to be as prepared as i can. I have already purchased woollen hats and scarfs to make sure i keep my head and neck warm at all times if i am out and about in the weather. I am making sure that i also have enough gas in the flat at all times and have been topping up the gas meter each week to ensure i don’t run out in the colder months. Christmas is just around the corner and so is the freezing weather so the more i can do to prepare the better as far as my head is concerned.

There is forecast a small break in the weather this Wednesday so i am going to see if i can go fishing on that day with my mate John. I think a bit of Carp and Pike fishing will do me the world of good, fresh air and time on the bank will do wonders to my state of mind and help me take my mind off all the worries and stress. Fingers crossed the weather keeps to its plans as it can be so unpredictable this time of year and change at any moment.Even if we get a bit of rain i don’t mind going as long as it isn’t raining when we set up or pack away. There is nothing more annoying than soaking wet gear all the time. Especially if wet when its been put away as it starts to smell damp all the time. Lets hope the weathers stays on our side and we get to go other wise its another week stuck indoors staring at a computer and TV.

The best thing at the moment is that my bowels are finally returning to normal after all the trouble they have put me through. Whether it is the reduction in the medication that is helping and the fact that i am no longer taking 3 or 4 different medications for the stomach that is making such a difference but i am feeling way better than i was. OK i still get some wind causing me pains but no where near the level i was getting a week ago. I am praying this change continues and i start to feel a lot better and even start to get out a bit more often.

The Beast woke me but my head is messed up, how do i cope?

Again i was woken by the beast this morning but thankfully it wasn’t a full blown attack and was only a strong shadow causing me to wake up early. I did try and get back to sleep but i just couldn’t no matter how hard i tried so i eventually got up to start a new day. I have been a bit withdrawn from everything the last couple of days after my visit to the chronic pain management clinic and being there was nothing they could do for me. They blamed all the aches and pains and wind down to my tablets and said its a trade off between the side effects of the medication i am taking and the attacks i get.

If i don’t like the side effects or can’t put up with them then i would have to stop taking my medication and end up having loads of attacks every day. I was so shocked it has taken me a while to get to grips with things. I am really surprised at the doctors attitude but can’t say i blame her. As soon as she saw i was taking methadone her attitude changed and immediately she said well i can’t give you any pain killers!! ARRRRGGGGGGHH! I didn’t want stupid pain killers the idiot! Immediately she thought of druggy and i was there after medication. I have been through so much over the last year i just don’t know if i can carry on like this. My mood has dropped and i am now crying most evenings due to the pains and problems i am having.

How the doctors can say chest pains and trapped nerves in the shoulder is down to my medication i don’t know and how she works out that my legs going numb and having walking problems is down to the medication i just can’t work it out! I know the side effects of any medication will cause terrible things to happen such as my bowels blowing up and causing me all the wind and discomfort and i can accept that it can cause muscle aches and spasms and maybe even cause me problems with my left arm going numb all the time. I have already accepted that i would get some side effects off the tablets and the medication i am taking but to blame everything on the medication is just unprofessional and crazy.

She said i may have Arthritis and she named Osteoarthritis as one of the problems and then said there is nothing they can do for that and i won’t get any problems from that for many years to come. She did recommend that i attend physiotherapy course as i am shut off and not getting involved in activities. When i turned round and said to her “well how am i supposed to attend when i get anything from 2 to 10 attacks in a day”? she soon shut up and said i would have to try and arrange something with the organiser in person. I can’t wait to see my specialist, Dr Pickersgill, and tell him what she has said. He will probably fall over in laughter.

Now i have the honour of explaining everything to my doctor and telling her how the medication i am on is slowly killing me according to the Doctor at the hospital and that i have to choose whether i want to live with these pains and problems or the attacks i get each day. There isn’t many things i get worked up about or angry but this is one of them. Don’t they understand what i have to go through each day. Every time she said well you get headaches, i would say NO i get CLUSTERS, she would then cough and continue her speech and then again would say “…. and because of your headaches..” I would again jump in and say “NO!” , “Cluster Attacks”, and each time she would ignore me and continue. This really made me angry and by the end of it i just switched off and i think she saw that and said there is nothing we can do to help you, you are taking Methadone and Pregabilin witch are both strong pain killers so there is nothing more we can give you so i will let your doctor know its the side effects of the medication causing these problems and will recommend that you go back to Whitchurch for Physiotherapy.

Why i have to go Whitchurch i don’t know as it is a mental hospital. I think it is probably because she said i was on the verge of a breakdown, and can’t they blame me! Anyone who would have to put up with all this would surely be on the verge of a break down. I really don’t know if i can carry in this game they are playing with my health. I just get this horrible feeling i am going to have to suffer like this until it eventually puts me in an early grave.

On a lighter note! I got my prize from the Halloween competition held on Facebook by one of the fishing sites. I managed to get the Guess Where question right and my name was then chosen at random from all the correct entries and i won a nice little 7 meter fishing pole that comes complete with all the accessories. I don’t really need it as i have a competition standard 11 meter one but i will still get lots of use out of it especially on the smaller lakes where having a shorter pole is actually an advantage to get into tight spots.

I am trying to stay busy today as my mind is really messed up at the moment. I still can’t stop bursting into tears and can’t think clearly. All i can think about is what the doctor was saying and how bad it made me feel. I have NEVER come away from an appointment feeling so bad and so low, and now it seems to have had a knock on effect with my mental health and i can’t switch my mind off. How can i cope with all these problems every day, how much more must i put up with and have to go through, how come i can’t get help, they make me feel like i am imagining it all and it doesn't really exist, yet the pain is there to tell you it does. All i can do is cry for help?!

Several attacks from the beast, how much more…

I wasn’t surprised to be woken from my sleep by the beast but i was shocked to see it was only 1.30 in the morning. The temperature dropped last night and when i woke i could feel a cold band around my head and down my neck. I got up , managed to ride the worst of the attack as it wasn’t a massive one and then whet back to sleep. Only to be woken again at 3.25 with another yet stronger attack. This time i rushed into the living room and took my injection and sat there praying it would kick in soon. The pain kept building in strength and i started to fear the worst, that the attack had over powered the injection and i was in for a really rough time.

It was about another 10 minuets and then finally i started to feel the injection kick in and the pain in the head ease. It had left me again with a bad back and sharp electric shocks up and down the spine. Every time i moved i would get pain and especially in the back and shoulder areas. The left side of me is now in constant pain and i get trouble with some thing in my shoulder and back that is connected to the nerve. My bowels seem to be a bit calmer and the wind doesn’t seem to be producing as much as it was a few days ago witch can only be a good sign. My neck is in constant agony and the sharp pain behind my left shoulder blade that connects up to the neck when its really bad is giving me jip constantly.

My walking seems one day to be getting better and then the next it becomes bad again. The problems with the walking and my legs going numb all the time is an intermittent thing and is only there 2 out of 7 days. The problems i get with sharp pain in the spine and aches in the bum cheeks is more regular and especially happens if i walk to the shop and carry shopping. Even though i am not producing so much wind and haven’t been having the trouble with my bowels like before i am still getting strange pain inside me and also going to the toilet is very hard. It seems like the muscles don’t want to push what ever it needs to to get the stuff out of me and then after a couple of days building up the body then decides its evacuation time and every thing kicks into action.

I think its something to do with my bum going numb all the time making it feel like i am sat in a hole when sat relaxing. After going to the toilet the side muscles are very sore and tender to touch so what ever is causing all this seems to be effecting my muscles also. Thank god today is the day of my appointment with the chronic pain management clinic and hopefully someone will start to investigate why this is going on all the time. Especially why i am getting so much pain in my back, shoulder and neck. I am starting to believe its something to do with my neck and why every now and again it seems to click as if to click back into place. As well as setting off my CH attacks i think what ever is causing the neck to have problems is also effecting my spine. It’s all guess work at the moment and until they have run tests and start investigating we won’t know what it is.

I am just praying that no matter what ever it is that has caused me all these problems i will be able to get better again or at least start controlling it and stop all this pain and worry all the time. Each day, as time goes on and i keep feeling worst, i think something bad is going to happen and i will end up with either a stroke or heart attacks all from these problems. I am now getting pains in my chest where i never had them before, The head and the neck seems to be getting worst, my movement is becoming limited and the problems with my bowels keep getting aggravated. Surely to god someone can see that i have a problem and is willing to help me.

Beast is back to stay and so are the back problems… here comes winter!

It looks like the beast is back to stay as again i was woken up this morning at 4am with strong shadows and then again at 6.30 with an attack. It wasn’t a big one and only lasted about 10 minuets in total but it was enough to set off all the other problems i get with the nerve being damaged. My back is again in constant pain and i feel like i have something stretched from the top of my head into my neck and then from the neck all the way down the back into the bottom of the spine. It doesn’t go straight down the spine like one would think it would it actually goes off to the left behind the left shoulder blade straight down and then angles back into the centre of the back. I suppose that even nerves don’t run in straight lines.

As time goes on and the weather becomes colder i am starting to feel it more and more and it is really becoming a problem as i can’t carry anything heavy as the pain becomes too much to bare. I can’t walk long distances because the legs start to go funny and feel like lead or even worst they become numb and i eventually fall to the ground until the feeling comes back after a short rest. Even when i sit for a long time my back starts to hurt and the pain behind the shoulder becomes too much and i have to keep moving to try and get comfortable. It seems that what ever is happening to the nerve and my health is starting to get worst and seems to be spreading around my back and the rest of the body.

Thankfully i am at the hospital on Monday to see the Chronic Pain Management Team and hopefully we will start to get some answers as to what it could be and they will begin to investigate all the other problems i am having including my bowels and the wind i keep producing for no reason. For the time being all i want to do is to stop the pains in the back or if i can’t stop what is happening to me at least make it comfortable and manageable. I am starting to think its about time i started taking pain killers again but am scared of going down that road as i become addicted to them so quickly and then, after time, i become immune to the tablets and end up having to take stronger and stronger doses.

This is one of the main things that messed me up a few years back and took a while to get off them. At least with the help of the Pain management team i will be able to monitor what i am taking and will just have to be very strict with myself. Maybe there is a pain killer that will work on the back that isn’t so addictive but unfortunately most of the strong pain killers, with the strength that will actually help, all seem to have ingredients that are highly addictive. I think i will have to be very careful what i decide to take and will wait to see what they will recommend for me.

For the last couple of days the wind and the bowels seemed as though they were getting better or at least they were behaving themselves and not filling me up with wind but then yesterday it all started again and i began to fill up with wind. I don’t know what is causing it as i haven’t done anything or taken anything different from what i was doing and eating the few days before it started again. If it was something i ate surely i would have noticed what set it off but nothing. It seems to have a mind of its own and plays up when it feels like. Today its not as bad as yesterday but is still there so i have to take it easy and make sure i don’t end up like a balloon again!

Today is shopping day! I couldn’t go yesterday as my back was just too bad and today its the same again but thankfully my mother and step father Brian will be picking me up at lunch time and taking me with them whilst they do their shopping so i don't have to carry the shopping back by my self and end up in agony all the way home after stopping every 2 minuets to let the back and legs recover. Its crazy how the smallest of jobs seem to become a huge problem when your back is in pain or you have mobility problems. I have really started to respect people in wheel chairs and those who have walking difficulties and just seem to get on with things with a constant smile on their face. They are stronger than i will ever be and i have so much admiration for those who are in pain but don’t give in to the beast and get on with their life.

 

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Can’t remember the last time i was pain free…

Another day where i have been woken by the beast. At least it wasn’t a full blown attack and was only the pressure on the left side of the head that was playing up. “The shadow feeling”, as other CH sufferers describe it, is a really annoying feeling of pressure pushing down on the left side of the head and face. Mine was so strong this morning it woke me a couple of times, firstly at around 5 am where i just thought about getting up but was just too tired and ended up falling back to sleep. then again at 6.30am and then finally at 7.20am where i just decided to finally get up out of my pit and face the new day.

For the last few days i have been having murder with my nerve especially in the back area, For some reason it seems to be spreading from the head down through the neck and into my back and is now reaching as far as the bottom of my back in the middle of the spine. When it plays up it feels like i have a bit of elastic stretched from the back of my head down to the bottom of my spine and with each movement it pulls along this line causing me discomfort and even pain. As the weather has started to get colder the nerve has started to play up more.

Its not helping that i have all the problems with the bowels and wind all the time as i am doing a reduction in the amount of Pregabilin i take each day to see if it is the medication causing all these problems and of course with the reduction in medication comes more attacks from the beast. The only thing i can do for now it stop the decrease and start to increase it again to stop the amount of attacks i am getting during a day. So far it hasn’t been bad so i haven’t needed to go back up on my medication but i am sure its about to kick of as i can feel it playing up more and more each day.

The hospital rang me yesterday witch was a massive shock as they don’t normally do that, well not in my case anyhow, and have confirmed my appointment with the chronic pain clinic on Monday at 2.15pm. I really can’t wait as it means its the start of the investigations into the pains i am getting up and down my back all the time and also the problems i get when walking and my legs turning to lead all the time and going numb at the most inappropriate times. Lets hope they will find some answers soon as i just can’t go on like this for much longer. I feel like all my energy is drained and i am in constant agony and discomfort all the time. I have forgotten what its like to have a day with no pain at all.