Attacked by the beast at 3am and some strange things going on ….

So far this month i have been woken almost every morning by an attack from the beast leaving me suffering in pain and aches most of the day. It seems to be making the left side of my back play up a lot more than usual and i don’t know why. I am getting sharp shooting pains down the left side of the spine right to the base of my back and just behind my left shoulder blade i have a feeling like someone is cutting a line into my back. I can only assume this is the nerve that travels down the back or even a muscle that is causing this feeling.

Each attack starts at the front of the head and face just above the jaw and the eye and travels over the top of the head as it usually does and then into the back of the head just at the base of the neck. This leaves a feeling like the neck is swollen and every time i move it from side to side i get a grinding feeling. I also get the sharp shooting pains appear that start at the neck and travel right down the left of the back down as far as the small lump i have at the bas of my back right next to the spine on the left. I am sure this lump keeps hitting nerves every now and again as even when i don’t have an attack this lump always seems to give me a lot of pain.

The hiatus hernia i have developed since becoming very ill seems to be playing up all the time lately. I have tried to avoid things that can aggravate it such as foods and liquids. I have even elevated my bed for when i sleep so my head is up at an angle to stop any acid reflux during my sleep. All this seems to have done is make my neck a lot worst so last night i decided to lower it again and see if my neck improves a bit and if i can stop getting the attacks in the early hours. Waking up 3 am every morning and unable to go back to sleep is really draining me and making me feel ill and weak all the time.

I need to try and recover a bot and gain some strength back but if this keeps up i just don't know what to do. I have tried having a kip during the day but can’t seem to get to sleep as my body knows that when i sleep i am going to be woken again by the beast so i just can’t win at the moment. I am also getting a strange feeling at the back of my throat the last week or so as if there is something suck there but when i check there isn’t anything there and no sign of any soreness so i haven't a clue what is going on. It feels really strange and sometimes feel as though i am about to choke but nothing comes of it. I am getting some strange things happening but think its really all down to the lack of sleep and tiredness so i really need a way to recharge my batteries. Let’s hope the weather improves soon so i can start going fishing again as that will surely help me to recuperate and recover my strength/

Fishing Adventures Wales: Using Fishing as a Therapy

Fishing Adventures Wales: Using Fishing as a Therapy: Fishing as a Therapy by Martyn Russ   I remember back to my youth when I used to pop down the local water with my farther for a days f...

Another early morning start at 3am with a visit from the beast!

Another early morning wake up call from the beast resulting in agonising pain lasting well over an hour this time. The pain was so strong it has left the entire left side of my face feeling sore and my neck feels like i have a golf ball stuck between the joints. Every time i try and move my head the neck feels like it is grinding and it causes me extra pain. No matter what i try to avoid the attacks in the mornings nothing seems to work. I decided to see if it was just the cold causing it and left the heating on quite high during the night but still the attacks appeared. Apart from having a restless night due to it being to warm there was no difference and when the early hours came so did the pain.

I have also noticed that the lump in my back has been causing me a lot of trouble whilst trying to sleep. Every time i roll in bed or move it starts to hurt. I am wondering if by making the top of my bed slant upwards, by putting pillows under it due to me now suffering from the hiatus hernia, if it is causing the back and neck to play up and hence the pain in the lower back where the lump is and the feeling of grinding in my neck. When i try and do something to ease one condition the other one plays up. Its just not fair any more.

When the specialist told me that this condition had no cure or treatment apart from strong medication and that i would have to learn to live with the condition i didn't expect all these other problems to arise and most of them have come about due to side effects from the medication i am already on. At least the injections work and the oxygen does help to half the length of time an attack can last but i still get the really bad attacks where nothing seems to help. OK i am grateful for the medication i am on and that the attacks have halved since they turned chronic but its still tough to live with.

I am due for an appointment with my specialist again at the end of this month so hopefully we will be able to take action to try and get the rest of the attacks under control and try and do something about the side effects that i am getting. I have noticed that since i started the Sodium that my dreams have turned into nightmares all the time resulting with me waking up in a panic and cold sweats most mornings. The trouble is this medication is the first since pregabilin that i can say actually worked for me and stopped some of the attacks so i don't really want to keep chopping and changing medication but as the specialist explained it can take a long time before we find the right combination of treatment to put the attacks into remission.

Early morning wake up is driving me crazy …..

Its amazing how annoying the CH condition can become when you have a really bad run in the mornings. I wish this cold snap first thing in the morning would hurry up and go and Spring to start as every morning, bar a few where i have started pain free, i seem to be having an early morning alarm call from the beast. The same thing happens between 2am and 4 am where i wake up immediately, not even feeling tired from my sleep, my eyes open and then within seconds the pain begins. Always starting at the from above the eye and on the top of the jaw, travelling behind the eye and then over the top of the head and straight into the base of your neck. The pain level is so intense i immediately hear ringing and static in my ears as the pain shoots over the head. My eye begins to water and my face droops all on the left side of the head. A small swollen ridge can be felt along the top of my head where the nerve or what ever causes the condition is swelling up.

The attack can last anything up to an hour and a half but most are around 45 minuets to an hour. If i manage to take my injection quick enough the attack seems to stop after 10 minuets but sometimes the level of pain is so bad it over powers the injection and i have to ride the attack. After the attack i end up with secondary pains all up and down the left side of my back and left arm. This can cause after shock attacks (as i call them) which means the pain from the back shoots back up to the base of the neck causing the pain to reappear over the top of the head. I can get several of these attacks during the day and although the pain doesn’t go as high as the main attack you would still rather death than have to put up with that kind of agony all the time. The only way i can describe the level of pain is if you imagine all you migraines, headaches, abscesses and rotten teeth all happing at the same time, if you can imagine that then your half way there.

Its strange how the cold seems to be the main thing that aggravates my head and sets off the big attacks. Cold wind blowing in my face and even extremely bright lights can also set off attacks. I haven’t found any food that can cause it nor have i found any drink but as i don’t drink alcohol i wouldn't#t know if it makes it worst as some people have reported. In one way i am grateful i don’t drink anymore. I did when i was younger but after having too many bad experiences with alcohol and getting drunk i thought it was for the better and better for my health if i didn't drink. I can’t wait for the spring and summer to start again as when it becomes warmer i know my attacks will decrease again and i will have more pain free time on my hands again hopeful to be able to get out in the fresh air and do some fishing again. Until then i have to keep putting up with the beats and the attacks and especially the early morning wake up call that's really starting to do my head in.

On a plus side i have noticed the swelling in my stomach has started to go down a little and my bowels have started to work again. I m still getting problems with only being able to get every 3 or 4 days but at least they are now moving again and i am no in so much pain. I think the swelling is from the hernia and as i have now started to avoid foods and drinks that set it off and cause me discomfort it has started to ease the swelling and go down a little but i still have to maintain being careful if i want it to continue. Avoiding things like Caffeine and Spearmint, Peppermint and sponge Cack and even chocolate can cause wind, bloating and swelling as it seems to make the hernia play up and cause me major acid reflux. The main thing is at least i now know what is going on and don't seem to stress as much when i get the pains in the stomach or stabbing pains from wind. I just wish there was something i could do about the lump in my back next to the spine as every now and again it seems to play up and when it does it hits the nerves and causes me shooting pains up the back and tingling in my left arm and left leg. I think i will have to speak with the specialist when i receive my next appointment and see what he suggests as my doctor seems not interested.

So much for a rest and recharge, still in pain….

Well its officially the end of my weeks long lazy recharge to try and get some life back into my body. I decided after my last visit to the hospital to try and take it easy and stop the stress from causing me attacks all the time and worrying about my health. I chose to stay off the computer not even updating my blog as i usually do and even visits to Facebook were restricted to my mobile phone as there was no computers allowed for the entire week. The idea was to eat sensibly and rest as much as possible so my back didn’t hurt all the time from the lump and cause me extra attacks as it hits the nerves in the back sending shooting pain up my neck into my head bringing on the beast. I also used to time to experiment with different foods to see the effect it would have on my hernia and the acid reflux that certain foods now cause. I found that sponge cake and bread bring on bad acid and that caffeine causes sever bloating and wind. It’s going to be a while until i learn all the different things that can set off the hernia i now have but in the mean time i will just have to be careful with what i eat and drink.

I have even tried relaxing in Radox hot bath’s to try and ease the nerve and the swelling i constantly have over the top of my head like a ridge. This is where the pain travels when i get a full attack and so far this last week it has been every morning, in the early hours. I don’t get as many attacks as i used to get and especially not as many during the day but i still get them regular with no particular pattern. I keep a diary of every attack i have just to see what causes them and if i can prevent them but nothing seems to show up and say “That is the cause”. I know the cold is one of my main triggers and stress also contributes to the amount of attacks i can get during a day./ If i stay calm i get one or 2 but when i stress i can get up to 5 in a day, this is still a lot lower than my 8 per day average when they turned chronic. I sometimes wonder how i have managed all this time, constant attacks and pain. It’s only when i think there are people a lot worst off than me in the world i start to think that i can beat this monster and stop it from dictating how i should live my life.

It’s almost fishing season once again and this year i am determined no to miss out on as much as i did last year. OK if i am very ill then its understandable that i won’t be able to fish on those days but i intend to get out as much as i physically am able to and get some fresh air this year and catch some monster size fish.  When Korum competition in 2013 it was a chance for me to experience what only the professionals experience and those that can afford the sport. For me it was as though someone had given me a second chance to get some sort of life style back and despite my condition i could participate in a sport and hobby that i love so much especially when i first started fishing years ago when i was young, i will never forget my fist catch. Fingers crossed i will be able to add to those experiences this year and also get some new content for my fishing web site.

Again the social have decided to put me through another medical assessment.This time they are conducting it at my home so i don't have to worry about traveling down and having attacks while i am in the waiting room or reception area. I don't mind the travel its just when i have an attack around people it always seems worst and people start to panic when the see the state i get in. Its really embarrassing sometimes and i don’t like people seeing me suffer. This is one of the main reasons i tend to lock myself away in my flat and very rarely go anywhere now. This is the reason i love my fishing so much as it gives me the excuse to be out in the fresh air and if i do have an attack i can hide away in my bivvi or tent until the attack has passed. I just find it crazy that even though they have copies of my diagnosis from the specialist and my doctor they still find the need to double check up on me. It’s not like i can do anything even if i wanted to, no ones going to take on a person who has a stroke like attack every couple of hours or several times per day. I think the medical insurance would go through the roof.

The beast continues to attack during the early hours….

The day after my endoscopy at the hospital i suddenly had what i can only describe as an attack from hell. It has to be one of the strongest and most painful attacks i have had in a long time. With my attacks now down to half the amount they used to be and an average day seeing mostly 2 or 3 attacks, that i can deal with using my injections, you can sometimes be lead into a false sense that the attacks are stopping or getting better then suddenly you have a really bad day triggered by either stress or cold and then you remember just how much pain you are actually in all the time. No matter how many attacks i have and how used to it i think i am you always end up surprised just how much pain the human body can take.

Each morning i am still waking up in the early hours with the beast attacking me and my head seems constantly swollen along the line where the attack seems to run. My neck is in pain all the time and i am still getting pain travel from the neck down the back towards the lump i have on the left of my spine in my lower back. This lump can sometimes hit nerves as it moves about and when it does it send an electric style shock straight up my back and into my neck. This can also set off the attacks and aggravate the beast if i am not careful. My stomach is still swollen and my bowels are still problematic. At least i now know it is the hiatus hernia that has been causing all the problems up in the chest and when i eat and drink. I just don’t know what the doctor plans to do about these problems or if they are just going to leave me and i will have to manage them with yet more medication.

I am still sure it was the medication that has caused all these problems. Because i have to take strong medication for the CH condition it has side effects that you have to put up with if you want to remain pain free. Then you end up taking more medication to take care of the side effects and it just one giant circle. No wonder my bowels are so bad and i am always suffering with constipation. I am praying that when i see the doctor next week for my biopsy results that she will have some sort of plan in mind in order to treat the things i have going on at the moment. If i can get the back sorted and my bowels moving again i am sure i can learn to live with the hernia and my CH attacks. Also with the help of new medication from the specialist i should be able to get these attacks under some sort of control this year.

I was having so many problems last year that i missed out on a lot of fishing. There was so many venues i wanted to visit and so many chances i missed out on due to pain all the time and my back not letting me move about. I don’t mind having an attack whilst out fishing as i can hide away in my bivi and not let people see me thrashing about in pain. When the attack is over i can then go back to fishing which is one of the only things that relaxes me and makes me forget about my illness and worries. It gets very frustrating when you can’t get out even to your local lake that is just 5 minuets down the road. I am determined this year to not let it happen again and to stop shutting myself away in the flat and start to get on with my life instead of waiting for the next thing to go wrong. Now i am starting to learn what is actually wrong with me i can now make a plan of action and make sure i don't make my condition worst and keep myself comfortable so i can get out into the fresh air a lot more and get on with some fishing.

Starting to find out what’s going on at last…

After years of suffering i am finally starting to get some answers as my appointments start to appear. I know the NHS is stretched but i have been waiting for these tests for over a year and now they have done them i am finding out that my suspicions were correct. I had been given my appointment time and date for the endoscopy to try and find out why food keeps trapping and also liquid making it difficult to breathe until it has passed through. I have to massage my chest like crazy when it happens and the food or drink eventually passes through with a pop. When i received the appointment i was very worried that i could have a CH attack whilst they were in the middle of doing the procedure. Due to being so worried i had opted for the sedation option rather than the throat spray and it wasn’t until i had the endoscopy that i regretted my decision.

They took me into the room and asked me to lay on the operating table whilst the nurse put a needle in the arm and flushed through the blood. It was just after they gave me what ever it is for the sedation and then asked me to put a blue guard into my mouth and bite down on it. This guard ensured i couldn’t bite down on the tube as it was pushed down the back of my throat. As soon as it started i began to heave and throw up. The nurse was using a small tube with suction to get rid of all the bile i was bringing up. With each movement i kept on throwing up and it was then that the specialist realized that the sedation had no effect on me but was too late to stop what they were doing. I continued to throw over and over again whilst she was looking around to see what problems there was. It only took 6 minuets from start to finish for them to find the problem but it felt like ages.

After it was all over i could feel that they had scratched the back of my throat and it was really hurting. I wish i had taken he throat spray instead. The nurse then called me into a side room and said she had good news and bad. The good news is they found what was causing me all these problems. The bad news is that is a Hiatus Hernia and that i would have to change my lifestyle. No more could i have caffeine or chocolate and had to avoid fatty foods and mints. I was also to try and cut down my smoking and change from normal meals to small regular meals that i could cope with making sure i do not eat 3 hours before bed. I am also to elevate my bed by 10 degrees at the head by placing pillows under that mattress so during my sleep i don't develop acid in the chest where the hernia had come through. 

As you can see from the picture above it is quite a large hernia that i am going to have to learn to live with. Ever since my diagnosis and the start of these strong medications my health has been going down hill and no matter how hard i fight i just can’t seem to cut a break. I am grateful that my attacks have halved but i am still getting bad ones and i can get up to 4 a day and am only able to abort 2 of the attacks using the injections so i still end up having to go through hell for over an hour at least once a day. I haven’t yet restarted my Sodium as i have a swollen stomach and swelling around my heart according to the hospital so they took a biopsy to see if it is from a rare stomach bug so i still have to see the doctor in 5 days to start to make a plan of action as to what to do about all these problems. I have also been keeping an attack diary to keep track of all the attacks and the things that have been happening to me, I decided to start this since i was in hospital last year so i could see if certain things make it worst or if it gets better with the treatment.

I am hoping that as soon as i can start to restart the sodium the attacks will then disappear and even go into remission for a while giving me a chance to get myself a bit fitter. The trouble with suffering from illness all the time is it is very difficult to get out in the fresh air or go anywhere to take your mind off things as you end up locked away in your home all the time scared to go out in the cold just in case it triggers a big attack as the cold is one of my main triggers. I try to do things to take my mind off all the stress and worry but it is so hard. Every morning when i wake up i am expecting pain and discomfort all the time. I am praying that now we are starting to learn exactly what things i have wrong with me, as we treat them i will start to be able to get out more and get back to my fishing. I have planned to start my season in March this year and try and get out as much as i can as i missed out on many fishing trips last year due to the pain all the time and this year i refuse to let it stop me. Once i have the correct medication for each condition i should be able to start to manage it better,resulting in a lot more pain free time.