There was one point where i was going to explode ……

What a rough couple of days i have had with regards to my bowels and the IBS playing up something rotten. I have been in so much pain all sue to trapped wind in and around the organs and a constant feeling like i was bloated and always needed to pas wind or go to the toilet but i just couldn’t. As time went on it became even worst as my muscles were so tense from being bloated i couldn’t actually push to go to the toilet. I was in complete agony.

The doctor had given me these drinks to clear me out as they couldn't find anything wrong in my tests apart from the high cholesterol and the risk to my heart if i don't get it down. With the help of medication and watching my diet i should be able to do that but this problem with the bowels is so frustrating and painful. The drink the doctor gave me also produce wind so makes it even worst to endure. today i have decided not to take the drinks as my bowels opened this morning, it wasn’t a pretty site and my stomach is so sore.

At least i haven’t got the terrible wind at the moment and all i have is sore sides. i am hoping that by taking a break from the drinks just for one day will help to calm down the IBS as stress makes it even worst and its hard not to stress when in pain all the time. My head has also been playing up in the last couple of days and the Beast has been to visit in the early hours this morning but i was able to control it with my injection.

My belly is really sore and tender and just moving around is making it feel worst so i think its going to be a day curled up on the sofa waiting for the stomach to calm down and hope the wind doesn’t build up as it did yesterday. There was one point during the night i thought i was going to explode. I couldn’t sleep on my side like i normally do so i had to lay on my back waiting for the wind to naturally escape and disperse and relieve the tension on my poor belly.

Attacked by the beast, thinking about winter, god help me!

After a nice day fishing yesterday with family and friends i thought i would actually be tired enough to get a nice lay in but no chance. The beast decided to attack at 3 am this morning and would not leave till way gone 4. The pain was so strong i just didn’t know what to do. It has made my back pain worse and my head feels like it has been in a crusher and the neck is really sore. Not to mention my bowels, i feel bloated and about to go pop unless some wind releases soon.

I don't know why they just wont stop producing wind. As soon as i get rid off one lot more is there to replace it and why on earth does it trap around the organs. it wouldn’t be so bad but it hurts like hell with short stabbing pains and when you move they all go off at once. I move around as if i have suddenly turned to 80 years old and my movement is no more. When trying to go to the toilet its as though i have an heart attack each time as the constipation makes me strain so hard i think my head is about to explode and then to have nothing but wind come out just makes you want to scream.

I am starting to believe i have had a blockage in my colon or bowel for quite some time as it seems to be struggling to empty out what ever it is inside. With out going into too much detail i have seen easier toothpaste tubes. Anyhow, the attack seems to have left me with the shadow hanging over me once again and that horrible feeling of pressure on the left side of my head where i get the attacks all the time. It’s always something wrong with my left hand side due to my attacks. If my arm goes dead its the left one, If i have to trap a nerve in the shoulder its the left one. If i hurt my knee its the left one and so on i am starting to thing i should protect my left side a little better in future.

Well it looks like the winter is now drawing in closer and the weather change has started. All weekend and next week we are in for rain , rain and , yes you have guessed it! More rain. Normally when we get so much bad weather we get low pressure systems move over the country and for some reason it seems to trigger my attacks and make them a lot worst. I have been trying to get in touch with my consultant with no success. Just to get an appointment and another medication to help battle with the beast this winter as i don’t think i could get through another winter with out help. The injections work but for only a couple and not for the strongest of the attacks. I am in for a rough ride i believe.

I kept on waking up each hour i don’t know why?

I woke up at 3 am and was wide awake laying there staring up at the ceiling waiting for the Beast to show its face but nothing i then drifted off back to sleep left in a state of bewilderedness. Then again at 4 am i was wide awake open eyes and no pains or aches anywhere and after feeling like you have only just got back to sleep and feeling very grotty i was not amused. I then decided SOD it! Jumped up out of bead and ran straight into the living room as i switched the light on it was as if it switched something on in my head and then suddenly the Beast made his attack.

My eye begun to swell and close on the left of my face, it felt like someone or some thing was trying to claw my eye out of its socket. The pain was shooting straight over the top of the head towards the left more and into the back of the neck. I tried massaging my neck to see if it helps but for me it seems to make things worst. The amount of sweat that pours off your bod is amazing. Not only the face and the head but every single part of your body, your legs lower ad upper and your arms the same, all of a suddenly they are soaked. You end up having to change all of your clothes as you nearly always end up drenched when having the bigger of the attacks,

The pain you get up and down the spine can only be described as someone putting a fag out on the bottom of your spine but not only one put a load out all up and down the spine and then you would get close to what it feels like After you have taken your injection it takes a little while to take effect unfortunately and you end up having to deal with an attack for about 10 minuets which at the time feels like an hour, I have found a pain management exercise that helps me to cope with the attacks as they are happening.To others it may seem a bit odd but i don't care as long as it keeps the pain away. I use a soft towel or cotton T-Shirt to push down on my eye to give slight pressure but when its really bad i use this towel to vigorously massage and rub the pain full area. the build up of static between the  cloth and my hair and for some reason this seems to help reduce the pain levels.

I can now honestly see why they are called “suicide headaches” , It could really drive you crazy constantly. It wasn't until my attacks turned to a daily issue i began my journey and tried and still am gathering any and all information about the condition CH. Maybe one day they will get a cure. Well its fishing today with my mum, step dad and good friend John so we re off early-ish this morning so i have to get my gear ready, not that there's is much that is needed, So i will leave it there and update you tomorrow and fingers crossed for a for a good days fishing and to catch loads of fish .

“The Attack of The Beast” again started by the weather…..

Being woken by an attack from the Beast is really stating to get on mu nerves excuse the pun) It wasn't a mild one like most start off with nut a full blown attack as soon as my eyes were awake. My eyes opened and all i could feel was a pain like someone was trying to take my eye out through the back of my neck . My head and neck became swollen and my eye started to close up as the sweating began. I burst into sweats and within seconds my clothes and bedclothes were all soaked i had to jump out of my bed any way to take my injection so headed into the living room and took the injection. As i sat there waiting for the injection to take place all i could hear was a very load ringing sound in my ears. i have had this sound on several occasions before whilst having bad attacks and this was no different it seems to shut out all other sound until the attack becomes under control. After about 10 minuets past i could feel the injection start to take work as my chest tightens and my breathing becomes shallow and hard to take a proper breath, thankfully this doesn't last long. Then suddenly you get a curious feeling like no other come over you and unfortunately i have now way of describing it all i know is it starts to work on what ever is causing the attack and aborts it by putting it to sleep.

After you have had an injection the attacks seemed to go but you are left with a few side effects such as sore neck and back and tenderness on the side you get your attacks. The swelling of your face does take a little longer to go away but that again is just part of the aftereffects. You then have to be careful not to bring on another attack as the first 10 minuets after having an attack and aborting it you are just a, if not more vulnerable to getting a secondary attack that can be sometimes worst than the first and you are NOT allowed to take another injection as you MUST leave 1hour in between doses minimum.  After the attack is over and you are beginning to feel back to normality (if the is such a thing as normal anymore) and apart from the neck aches and back pains i am back to my old self again.

My Bowels are again in trouble and i keep on getting wind for no reason. I decided on going fishing with my Mother (Trish) and my step father (Brian) up at one of out local fisheries as we all fancied a day out in the fresh air. We have all been going through a bad year lately and i for one can’t wait until this year is over and we get to start a new one. My mother had problems just like me when she first came back to Wales from Cyprus and is now wheelchair bound if she wants to go anywhere. My stepfather not only has to help my mother all the time as he is her primary carer nut he also have to contend with a very bad back and other health problems such as high cholesterol just like me, So they have been going through a lot themselves. The worst think is i know i am a moaner and tend to push my problems on my mother for advice and help but this month i have been trying to deal with them myself/ Now considering i suffer bi-polar disorder and my health has been getting me down all the time i think i am doing pretty good coping wit things but still i slip up and need peoples advice what to do.

With some warm weather forecast before the winter pushes its way in autumn we have decided to try and get as many fishing trip in as we can over the next couple of weeks as if we leave it much longer its going to all change to winter fishing. I don’t mind fishing during the winter months it just means you have to choose your days carefully and wrap up so warm not one bit of cold can get in. Lets hope the weather forecasts are correct and i will be able to get in at least 2 more trips before its time to slow down towards winter. On a more important not talking about forecasts the weather forecasts have some nasty wet days booked over the next couple of weeks so i could be in for a rough time with my head. Yet again its time to chase up my appointments and try and find out what is happening.

Talk about windy, I could blow myself away…

Thankfully the beast is staying away at the moment and i am managing to get a few days where i am able to lay in until around 7 or 8 in the morning which is really good as normally i am up at the crack of dawn. Either i am woken by the beast in the early hours at about 3 am or i normally get up at 5 or 6 am and am unable to lay in due to restlessness. Being able to lay in those couple of extra hours does make all the difference especially to my strength as i feel i have a lot more strength and feel well rested. Unfortunately my bowels doesn’t agree with me on this and have decided to play up despite me feeling more rested and more energetic.

I keep getting sharp stabbing pains on either side that i can only assume is down to the wind building up in the body once again. It seems as soon as i wake up and settle the wind starts to build and i become uncomfortable very quickly. I am still taking the drinks in case it is due to the bowels being impacted and there is still a lot of stuff to come out and i will have to continue the drinks for a total of 2 weeks according to my doctor. I just wish it would sort itself out soon as it is one of the most aggravating and uncomfortable conditions i have ever experienced. My back is still getting pains up and down the spine and i also have aches on both sides of the spine just at the top of my bum cheeks.

My bum also keeps on going numb every now and again and the trouble i get when that happens is horrible. I am unable to feel my muscles working correctly and i am unable to push anything out when trying to go to the toilet as the muscles needed to push just don’t want to work. I think this is one of the reasons why my bowel problem hasn’t sorted itself out as i am unable to clear the bowels properly. Each time i try and go to the toilet i am left in pain. My back muscles won’t work so i have to try and use my side muscles to push down and push out what ever needs to come out except it doesn’t seem to work that well and i end up almost giving myself another hernia through all the straining and pushing.

I already have a hernia on the right hand side just above the testicle that plays up every now and again and leaves me feeling like someone has run up and kicked me in the groin. Having one hernia is bad enough so i couldn’t imagine having several as the pain would just be to much for anyone to bare. I am just hoping that my bowels will settle soon and this wind will seen be a thing of the past. I don’t mind the wind inside the bowls so much even though its embarrassing when walking or when out in public and the bowels decide to empty at that moment. It’s the wind outside the bowls that travels around the internal organs trapping in places causing extreme pain and agony. Even when i massage it to move the wind it only helps for short while as the wind always comes back and traps in the same places.

Well there’s sod all i can do about the wind at the moment and hope that the stabbing pains will stop soon. i will go and camp and the toilet again and see if i can push it out but its doubtful. I seem to have one good day and then one bad day and they keep taking it in turn. I hope i don’t have this all winter to deal with on top of my attacks and the beast, i don’t think i could cope with it all winter long. If my bowels are not settled or better by Friday (another week) then i am going back to the doctor to complain and see if something else can be done or needs to be done in order to get the wind and the bowels to start behaving itself.

Stuck in limbo waiting for appointments ……

After a couple of days having to suffer horrible wind and pain when the wind travels around the internal organs i can honestly say my bowls are slowly getting back to normal. Every now and again i get a little sharp pain over on the right side where i presume my colon is and after the pain has gone i get a feeling of wind build up over on the left side and then comes the uncomfort and pain from the wind until the body decides its ready to release it and then i feel great. This seems to be happening several times per day with the wind trapping all over the body as it builds up and slowly it reaches the bowl area where it can eventually be released. I don’t know why its doing this or what is causing it. There could be several different reasons but the most likely is that i have an impacted colon and that is why it is taking so long to release all that is trapped in the colon. The doctor has given me Laxido drinks that are designed to clear you out and in the case of impacted colon or bowl it is designed to break down the blockage using the body’s natural water and then help to release the blockage. I have been on the drinks for four days now. The first day i used to sashes to start the ball rolling so to speak and would continue this dosage until the blockage started to move.

I was lucky as after the first day the blockage began and my bowls started to open again. I then dropped the dosage down to 1 sashay on the next day and that seemed to do the trick so i will now stay on this dose until all of the blockage is completely removed or passed. The only trouble i have found with these drinks is that they also make the body produce a lot of wind and when you are already suffering from wind you really don’t need anything else adding to the problem. It is now the fourth day and my bowls are still emptying and i am still getting horrible wind build up making it painful and also making me feel bloated all the time. After the scare the doctor gave me about my heart, and the fact that i have extremely high cholesterol levels that need to be brought down as quickly as possible, i have now changed my diet and instead of snacking during the day and only having 1 main meal i have changed to no more snacking and now i will stick to 3 meals per day making sure i have breakfast every morning. It doesn’t sound like a drastic change but for someone who doesn’t normally eat breakfast and hasn’t done for over 10 years its a new habit i now have to start getting into.

Making sure i eat properly and east the right foods has turned into a very important issue and i even have an appointment with the nurse next Thursday to discuss my diet and the fact i have such high cholesterol levels. I think they will put me on a very low if not NO cholesterol diet for some time until my levels drop enough to be in a healthy range. I don’t really mind as it’s about time i sorted my eating out and made sure i am eating the proper foods. i have been so distracted by my head and the attacks all the time that i just haven’t been looking after myself with reference to eating well and making sure i eat the proper foods. I always seem to be snacking on rubbish and chocolate so it wouldn’t surprise me if my sugar levels weren’t all over the place as well as my cholesterol. Maybe this is the kick up the backside i was needing to get myself sorted. I just wish we could get the rest sorted as well. I am still waiting for a date for my next appointment with the specialist to find out what medication is next on the list to try and get my attacks under control and with the winter just around the corner it is more important now than ever before. I am now waiting for the referral for my MRI scan on the back and the spine as to find out what is causing my walking and movement to be so bad. Why my legs are going dead and my bum and why the muscles in my back just stop working every now and again. It’s a very strange feeling when walking up the road and your legs start to go to sleep and its also very scary.

I can’t wait to find out what on earth is going on. I am also waiting for the referral to the back specialist that was referred over a year ago. I did get a letter a few months back saying i was still on the list and they would contact me as soon as a place became available but i haven’t heard anything since. Plus i am now waiting for my next appointment with the CAU team as my last share-care nurse left the profession to follow her heart and specialise in neurology, i really hope she does well as she was brilliant when i was under her care. So at the moment all i can do is wait for all these different appointments and referrals to start happening and then just maybe i will get some answers and finally get myself sorted. All i want is to have some kind of quality of life as at the moment i don;t have any sort of life anymore. Even my fishing was put on hold due to the bowls so i will be grabbing the earliest opportunity and going fishing i don’t care how much pain i am in i will still be going as i need a break from being stuck in all the time. i think that is the worst part of any illness, being stuck indoors unable to go out anywhere as you will end up in pain and agony all the time and when you are ill and in pain you don;t want people seeing you like it so you tend to shut yourself off from the world. I know it is happening i just can’t stop it. Just some sort of normality will be so welcome at the moment, just some sort of life…..

Pain in the side then a sudden explosion……

After being given drinks by the doctor to clear out my bowls as nothing else seemed to be working and taking them for a couple of days with nothing happening i was starting to wonder if i was ever going to be able to remove what may be blocking me causing my bowls to play up so badly as they have tested for every thing else. Yesterday, after drinking my second drink of the day as the dose is maximum of two a day, i suddenly had a sharp pain in me left side and i ran to the toilet and exploded. I then continued to exploded a few time in a row until what was inside was now out. I won’t go into details but the smell was horrific.

I continued to have terrible wind for the rest of the evening and small aches and pains in the sides. I then woke again this morning only to find i was building wind again and was slightly constipated again. I then decided i would drop my dosage and instead of two measures i would only have one. It took about 20 minuets before another pain in the side and a run to the toilet resulting in another large explosion with a couple of after shocks. I don;t know what is going on but i am just glad to be getting it out of me as it causes constant pain and agony all the time. I have now got horrible wind again and will probably have it for the rest of the day but at least the blockage, if there is one, will be removed over the next few days and maybe my bowls will then settle and i will get some rest from all this messing about.

My head is being good despite threatening to start a couple of times yesterday and once again this morning. I have plenty of injections now the chemist is doing my orders on a weekly basis and now keeps a weeks spare in stock so i should never have to run out again. My oxygen tank is starting to reach the empty mark so i will have to order another one soon. i have to say i am glad i use it as at times i am sure it has saved me whilst having major panic attacks. The main use is to reduce the amount of pain i get with the attacks and also reduce the length of time the attack lasts. Some times if you catch the attack early enough you can stop it from developing by using oxygen therapy. I will definitely have to re-order my tank so i don’t run out especially over the Christmas period.

Well i am starting to feel a bit better now what ever is causing this IBS to play up is coming out of my system so i will have to try and get in a couple of fishing trips before the weather starts to get to cold for me and my head starts for yet another winters period of pain. That's the only thing that has been stopping me from doing any over night fishing as i don’t want to have a big attack and something happen whilst no one is around to help, even though you prefer to be left alone whilst having the attack. I will have to try at least to get one over night fishing trip in before the cold snap so i got about a month i recon before it will drop suddenly and the winter will really begin.

Knock Knock from the Beast, Now waiting for answers…

Another wake up call from the beast this morning which was very surprising as yesterday was the first day in a while that i actually felt a bit better and my stomach wasn’t playing up. Today i have woken not only to a massive attack but also i am bloated and have terrible wind that is trapping all over the place. I think its trying to catch up for yesterdays break.

My neck feels extremely sore again after the attack and feels like something it stuck in between the joints on the bones. I am starting to wonder if that feeling is actually the nerve that is trapped that is causing me so many problems. To me it feels like a large ball of grit that grinds away when ever  i move my arm or shoulder joint. I can feel something stretched from the base of my skull down the neck and into the shoulder. It’s a strange feeling like something elasticated is joining the two together.

My back feels like i have laid on a bed made of rocks. It is so sore. I am getting sharp but not constant pain in the centre of the back right at the bottom of the spine and then i have a constant ache on either side that i believe is the muscles. As the wind gets bad i then start to get pain up the top of the back in between the shoulder blades making it more uncomfortable and annoying rather than painful. If i begin to walk anywhere all these pains begin moving up and down the spine making it very painful with each step i take. Not to mention the feeling of having lead shoes on.

This only ever used to happen once every couple of months and i have always put it down to the after effects of having an attack. It wasn’t until i started to get them with out having attacks i realised it was another problem that had to be diagnosed and sorted. Then as it became on a daily basis and now i can honestly say i get it at least 3 times a week. It is the most horrible of all feelings as your bum goes dead and your legs start to go to sleep and you begin to worry as you just can’t get around or move about anywhere with out serious pain and problems. I just wish we could find out exactly what is causing it and now i have to wait for yet another MRI scan before we will know anything. Some times i get so frustrated waiting around for appointments but there is nothing we can do except wait.

The Beast came out to play…..

Again the Beast decided to come out to play at 4 am this morning and wake me up with a massive attack that thankfully was aborted by my injection. I did try and get back to sleep but i had no chance. All i could do was toss and turn as the shadow or pressure feeling was just too strong and kept on irritating me. About 6 am i just gave up trying to sleep and decided to get up and start the day. I was greeted by yet more pain in the back and sides and my stomach felt like it had been put through a grinder. The wind is still developing even though i haven’t eaten or even drunk anything yet. I did take my tablets and medication and then decided to risk having a coffee to see if it would make my stomach worst. It hasn’t as yet made it any worst but i am surely not feeling any better.

The wind is still building and every now and again my temperature rises through the roof and sweat starts to poor off me. I am wondering whether i have a cold on top of every thing else that is going on at the moment. I really hope that isn’t the case but my nose don’t stop running and keeps getting sore and hard to clean it as the mucus turns hard and sharp and rips the inside of the nose. Ever since i took the verapamil and had an allergic reaction to the medication i have been going through hell with my stomach and the IBS that i have suddenly developed. I don’t understand why it has happened and why it didn’t stop when i stopped taking the medication that caused the problem. The doctor has tried all sorts of different medications to try and settle the bowls and stop all the wind building but nothing seems to work. Don;t get me wrong some of the medication does help as i would be a lot worst with out it but it doesn’t stop it completely.

The weather is about to turn nasty after the next month so i am preparing for a very rough time with my head and the beast. I am hoping it wont come to that and that the specialist will be in touch and i will be able to try another medication in order to try and get the attacks to stop all together. The ide is to put them to sleep so they don;t start in the first place rather than just try and treat the pain as there is no medication in the world that will deal with the pain i have tried them all. I have tried some of the strongest drugs known to man and some are highly addictive and may have caused me problems with my heart to appear earlier in my life rather than later. I am hoping this isn’t the case and my heart will be fine but you never know until its too late.

Feeling really unwell and unable to cope….

I have not been well at all for the last few days and now feel so weak its even hard to sit at the computer and type. My bowls have decided to play up something rotten and my stool has changed colour to a clay grey like tooth paste making it very difficult to push out. Any one with a dodgy stomach should stop reading now.

I have been constipated for well over a month and been really bad for the last 2 weeks. It wasn’t until Friday it all turned into a serious problem as i tried to go to the toilet on Friday evening but was finding it hard to push it out. I gritted my teeth and pushed as hard as i possibly could and suddenly exploded with a big ball and then a whoosh of water like having diarrhoea. It was every where in the toilet up the sides of the pan and all over my backside and legs. As i cleaned myself of and looked at the mess i noticed that my stool had turned a clay grey almost black with a oil slick like substance on the top of the water. Also i have been getting a constant wind build up and trapped wind travelling around the internal organs yet again causing me a lot of pain.

As to why this is happening to me we don;t know and the doctor is lost for words but is trying to get to the bottom of things. After having my bloods done she found out that my cholesterol levels are very high in a dangerous level so she has placed me on some tablets to get the cholesterol levels down as fast as we can. She was very concerned about heart problems within the family history and also the chest pains that i am getting. I have now been referred to the nurse for a chat about my diet and plans to get me eating a lot more healthily.

With regards to my bum going numb all the time and the problems i have walking and my legs going to sleep every now and again i have been referred for an MRI scan to find out what on earth is going on. She believes its down to arthritis or a problem with the nerve and spine.I personally think its got something to do with the nerve that is damaged in my head or trapped in the neck. My shoulder is still getting problems and my left arm is still getting pins and needles every now and again. I just wish that this would all stop and i start to feel well soon as i don;t know how much more of this i can take. all i want is to know what is causing it and be able to manage it so i have some sort of quality of life because at the moment i don;t have anything and all i am doing is living from day to day dealing with the pain and the problems wondering if something bad is going to happen to me and it becomes my last day.

A Break from the Beast but not the Bowls…..

The last few days have been a bit of a nightmare as i am having major problems with my bowls and excess wind. It’s bad enough having to suffer with attacks from the beast each morning but to wake up and then be in agony within a couple of minuets of opening your eyes all because your stomach is bloated and you can seem to get rid of the wind or stop it from developing. I have tried everything you can imagine and there isn’t a medication or tablet that you can take that will help get rid of it. I have use “Liver Salts” in order to break down the wind and try and settle my stomach but it only gives relief for a short period of time and the wind and pain just returns.

This has been going on a for a few days and due to me being constipated all the time it is a worrying situation to be in. On Friday my stomach was really bad and no matter what i tried i just couldn’t seem to get rid of the wind and no matter how many times i tried to go to the toilet and pass the wind it was just not having it. Then suddenly on Friday evening i had a strange feeling in my bowls the same feeling you get when you have the runs so i dashed to the toilet and tried to go. After about 5 minuets of pushing as hard as i could, but nothing seemed to be coming out, i suddenly exploded. The relief was amazing and it poured out of me. When i looked to check what had happened and the mess i had left behind after exploding so badly my stool had turned to a blackish grey colour and there was like a grey oil slick on the top of the water, not to mention the smell was like nothing i have ever experienced before.

It was as if there was a blockage and what came out had been in there for a very long time. I felt great after the clear out but unfortunately the very next day i was back to the same old routine of being constipated again and excess wind building up inside me and unable to pass it or get it out. The trouble with the wind is that it doesn’t stay in my bowls and ends up travelling around the inside of my body making it very painful and uncomfortable. I have tried everything but nothing seems to help so i no longer know what i can do to relieve the situation and make myself feel better again.

I have been trying to ring the doctors and make an appointment for the last half hour but the telephone is constantly engaged. this is normal for the doctors as they are always so busy. It is murder trying to get an appointment to see my actual doctor as she is pre booked weeks in advance and they will only allow priority appointments to see her so small things like problems with your bowls will be given to the locum doctor to deal with instead. I wouldn’t mind so much if i could actually get the appointment in the first place. Sometimes i just want to SCREAM!!!

Woken by the Beast and depression kicks in….

Its no surprise that the beast has called yet again in the early hours and that the attack was again a strong one that lasted some time before the injection was able to abort it. It has left me with a very sore neck and back this morning and also a feeling of pressure on the left side of the head known as the shadow. This “shadow” as they call it is one of the warning signs that i am going to have some very nasty and strong attacks later in the day and i normally get it when the weather is really cold. This is the first sure sign that winter is fast approaching and its time for me to start preparing myself for what lies ahead.

I have bought myself a nice thermal woollen hat that not only covers my head but also my ears and the back of my neck. It was actually one they use for Carp fishing during the winter and is designed to keep the coldest of days out so i am hoping this will be perfect for what i want it for. As long as i can keep the coldest of temperatures from effecting my neck and head i should be able to get through this winter with out too much hassle but something tells me i am in for a rough ride this year. I noticed a new pain last night, a really sharp stabbing pain right in the middle of my spine at the base of my back and is a constant one. I have looked to see if there is any insect bite or sign of a scar where i could have injured it but nothing is showing not even redness to the skin but the pain is definitely there. As to what is causing it i don’t know and only hope its something silly as its a bit worrying as it has been there for 2 days in total and no reason for it.

At first i thought it was just normal pains and aches like i usually get in my back but for some reason this pain stands out from the others. Again today i have a very sore back and any movement is met with sharp pain and agony and i am dreading walking to the shops or the chemist later this morning as it is really going to make it hurt. I don’t know how much more i can take of this and why the doctors haven’t found out what is causing it. I understand i suffer from a rare and un-curable condition but that’s no reason just to leave me rot away not knowing what is going on. With the winter approaching fast and the cold weather about to set in i have to find out what is going on as quickly as i can as it won’t be long before it all becomes too unbearable and i won’t be able to move at all. I am so hoping it doesn’t get that bad.

My mood i all over the place today as one minuet i am laughing at my predicament and the next i have tears in my eyes. The more i think about what is happening the more i become depressed and upset. If i could only get the back pain under control maybe it would seem so bad all the time. I know i have to put up with the head attacks and the strong shadows until they find the right medication in order to put the beast asleep, that i understand and can accept. The problem with the back i just don’t need at the moment as all the other problems are bad enough. Oh how i wish i was younger again, when i didn’t have a trouble in the world and was fit enough to play proper sports or go on vigorous outdoor activities with out a care in the world. As for now? all i can do i wait for the inevitable and pray it isn’t too painful to cope with. 

Waiting for results and appointments is driving me insane!

Again the Beast snuck up on me at 3 am this morning. It’s getting to be very annoying being woken up at 3 o’clock in the early hours and not being able to get back to sleep. Why can’t it be at 7 am instead at least i would never need am alarm clock to get up early. Yet again it was another strong attack that has left me nursing my head and neck and again i have bad pains in the back and up and down the spine. Well at least it’s only until next week i have to wait to get my blood test results and hopefully find some answers as to what is going on with my and why i am having so many problems.

I am again going to try and chase up the neurologist today and try and find out why they keep cancelling my appointments and when is the soonest i can see the specialist. I will explain all the troubles i am having and what is going on and just maybe they will be able to pull their fingers out and give me a confirmed date to see Dr. Pickersgill, the specialist who knows all about CH and how to treat it. The last time i spoke with him i was amazed at his knowledge about the condition especially as it is such a rare illness and they have no cure for it as of yet. He seemed to know everything there is to know about it and how to treat it with all the different medications. It has taken me years of reading and research to find out just 1% of what the doctor knows. That’s why they call them specialists.

The weather at the moment is not forecast in my favour as there seems to be quite a few days where we will have low pressure fronts moving across the country and i know this will end up setting off some nasty attacks. The worst thing is knowing what the weather brings and how it effects me. I end up locking myself in my flat, not going out as i am too frightened of having a big attack whilst stuck on a bus or in the middle of a shop or town. Not to mention the fact that i can only walk about 100 to 150 yards and then my back starts to play up and my legs starts to go funny and become numb. I think the legs going numb is the scariest part of all and not knowing why it is happening.

Well for now there is not much i can really do about it and have to wait patiently for the results. I know for sure it has something to do with the nerves and that's why the CH (Cluster Headaches) have become worst than normal as i think its causing something to trigger the nerve that in turn triggers the attacks. It wouldn't surprise me if it wasn’t arthritis causing all these problems and the nerve trapping between the joints. I just wish i could just have a year out, with no pains or aches or anything. Just one more year to do what i can before my mobility starts to go completely. I am hoping it doesn’t come to all that and it’s something silly but for some reason, with all these problems going on, i know deep down i am in trouble and really need medical help. The worst thing of all….. is all the waiting for results and appointments, it’s driving me insane!

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.