Attacks each morning are driving me insane…

It seems like i am having attacks every morning just lately and i suspect it has something to do with the frosty mornings i have been waking up to at 3 or 4 am every morning. My eyes open wide and i don’t even feel tired and within seconds of sitting up in bed the attack begins to build. The sweat starts to pour off me like someone has switched on a tap and soaks my clothes and its at that point i realise i am about to have a big attack. The pain shoots from the top of the jaw, behind the eye and back out over the top of the head on the left side following the path of the scar that i have from when i had my head split open all those years ago. I rush into the living room and take my injection and then sit holding my head praying to god for the injection to work and stop the on coming pain.

No matter how many attacks i have i just can’t seem to get used to the level of pain it brings and every time it seems like the attacks are getting stronger and more painful than before, if that is at all possible. The injection can take up to ten minuets before it kicks in and starts to work so i end up having to go through the first part of the attack no matter what and that is bad enough. When the attacks are really bad they can over power the injection completely and i end up having to ride out the pain for an hour and a half and sometimes even longer. I am grateful i now have the injections as i don’t know how i would have survived if i hadn’t found the right consultant who diagnosed my condition.

I had the Doctor from the ATOS group come out to do a full medical assessment the other day for the social for being on the sick. I think he wasn’t expecting me to be so ill and have so many different things going on with me. He didn't give a clue as the the decision he was making but advised me to keep all documentation and appointments and if i get any questionnaires from the social for my ESA i am to attack as much info as is possible and this may stop them having to do the assessment in the first place. Its crazy the amount of people who are genuinely sick and have been taken off the ESA and been told they have to sign on and seek work. I am hoping they don’t do that to me as i just wouldn’t be able to go and sign on and would have my money stopped and end up loosing my flat and the little security i have.

Fingers crossed all will be well and after 2 weeks when they make the decision they will see how ill i am and leave me alone for a while so i can concentrate on trying to get myself a little better and even get out a bit more and go fishing as i have been having withdrawals. I love my fishing but last year i was so bad i only managed to get out a couple of times and even then i ended up having to quit early as i was just in too much pain and suffering. This year i really intend on making up for lost time and can’t wait for the weather to warm up a few degrees so i can start and get back out on the bank side. I have some good friends that will be coming with me this year and we plan to visit quite a few new venues so it should be real fun. At least i will be able to get back out in the sun and fresh air as being locked indoors all the time is really getting to me and my depression is worst than ever but i know it will start to improve as soon as i start going out again.

One thing on the positive side is the decrease in the amount of attacks i am now getting. After all the trial and error with different medication and having allergic reactions that felt as though it was going to kill me i think we have finally found a medication that helps with the attacks. The Sodium Valproate i am taking seems to stop the attacks from building and has halved the amount i now get during a day. I used to have up to 9 on a bad day with around 3 or 4 on a good day. Now i am averaging 2 or 3 daily with my worst being 4 or 5 during a 24 hour period. Keeping the attacks down to around 2 means i am able to abort the attacks with the 2 injections i am allowed and it also means i can get on with normal things during the day but have to take the other conditions i am suffering from into account and take things easy still.

The Hiatus Hernia is still causing me a lot of problems and a lot of swelling below my chest and in my stomach. I am finding i can’t eat big meals anymore as i end up in a lot of pain and discomfort. I now have to snack at meal times but eat more regular to make up for it. My appetite isn’t good anyway due to the depression and not feeling like eating all the time but i force myself to at least eat 3 times a day even if its just something small. I make sure i drink plenty of fluids but no over do it as i don’t need a problem with retaining water added to the list of problems. My bowels are still having major problems from the amount of medication i am on and the side effect from that medication can sometimes be bad.

I get tingling in my arms and legs and seem to blow up and swell with a lot of wind every now and again. My mood is all over the place and i am up and down like a yoyo. I will have to see the doctor again this month and see if there is something we can do about the side effects of the medication just to make it a little easier to bare. I am also getting a lot of chest pains on the left side again and believe it is down to the nerve or the lump in my back next to the spine causing pressure on the nerves giving me shooting pains up the back and across my chest. Even though i know it must be the nerves i still feel scared that it could be my heart and worries me a lot of the time.

The early morning wake up call from the beast….

Firstly your eyes open and confusion takes over as you stare at the ceiling wondering if you are dreaming or awake. A few seconds pass and you realise you have woken from your sleep with out feeling tired or if you have actually been asleep. You listen for any sound or a clue as to why you have suddenly woken up and that’s when you realise all you can hear is a static sound and high pitch ringing in your ears. At this point you sit up in bed and prepare yourself for the wake up call from the beast as you realise what has woken you. Then the pain begins, starting on the top of your jaw on the left of your face and above your eye just on the edge of your eyebrow. You jump out of bed frantically searching for your injection as you know what is about to happen.

The pain starts to shoot over the top of the head making the entire left side of the head and face become sore and painful. Your eye begins to water and close as your face starts to swell. You feel like there is a fire behind the left eye and no matter what you do it just wont stop. The pain begins to increase and your breathing becomes shallow as you begin to panic from the pain. All you can do is place your head into your hand and gently rub the left side of the face hoping that by massaging it will help to ease the pain but it doesn't seem to work. You begin to rub vigorously along the top of the head trying to ease the growing pain and you pray to god for it to stop. All this happens within a few seconds and you know its time you have to take your injection before the pain becomes so strong it will just over power any medication you take.

You stab the injection pen into your leg and press the button praying for it to act fast and ease the pain before it becomes too much. You sit with your head in your hands rubbing and breathing deeply  trying to control the constant growing pain but no matter what you try it doesn't work. All you want to do is scream out in agony and smash your head on the ground as if to crack it open and release the beast but you know you can’t as it will just make it worst. You control yourself from screaming as it will just wake up the neighbours and at 3 am in the morning i don’t think they would be to happy. The injection starts to work and your chest becomes tight. You can feel your heart beat through out the whole of your body and your breathing becomes shallow once again. The ringing in the ears starts to decrease and then suddenly, as fast as it began the pain stops. It’s over!

This is how i wake up most mornings due to the cold weather first thing setting off my attacks. No matter how much i try and avoid having an attack and how warm i keep the flat it seems as if the head knows when it is cold outside. I feel as if i can sense the low pressure from bad weather passing over me. After each attack i am left with a feeling of pressure on the left side of my head. We call this the CH shadow and sometimes it can be just as bad as the attack itself. When having strong shadows i find it ends up setting off several attacks during the day and there is nothing you can do except ride the pain each time it happens. It always seems to leave me with a painful neck and every time i move my head i get sharp shooting pains travel from my neck down the left side of my back and a grinding feeling up in the neck. I can only assume its the nerve swelling up that causes this and have to wait patiently until the pain eases. I sometimes wonder how i can cope with having these attacks every day and how much more the body can endure.

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.