Woken by the back instead of the beast …..

Again i have been woken in the early hours due to agonising pain but thankfully it wasn’t from the beast this time but instead it was from the lump i have in my lower back on the left hand side. The lump is pressing on some nerves and is sending sharp stinging shooting pains right up the left side of my back under the left shoulder blade into the base of the neck. It’s this pain that can sometimes set off the attacks and Make every thing worst than it normally is. Yesterday i wasn’t so luck as i ended up waking up at 2am with an attack from the beast that i am sure was set off by my back pain. The attack lasted well over an hour and left me in agony for the entire day.

No matter what i did yesterday and what pain killers i took i just couldn’t get the back to stop hurting. When i walked or moved around it made everything 10 times worst and i was in screaming agony for most of the day and evening. It wasn’t until i decided to go to bed that the pain eventually started to ease off and i manage to fall asleep only to be woken again this morning at 3am. I am grateful that it wasn’t a full blown attack that has woken me but the pain in the back can be just as bad. The level of pain is so severe that i keep breaking out into cold sweats like someone has just turned on a tap and soaked my clothes.

At least i can get to see my GP on Tuesday and ask her advice what i can do and also chase up the physio therapists that were supposed to contact me after i left hospital but i haven’t heard anything yet and its been well over a month since i was last in hospital so i should have heard something by now surely. It is possible they are waiting until i have the endoscopy to see why my food and drink keeps trapping and making me feel uncomfortable and also bloating me up all the time. It seems to be taking ages to get my appointments after i have been referred. Both for a scan on my back to see what the lump is and also the endoscopy to see what is causing all the trouble.

I am still having problems with my bowels and constipation due to all the medication i am on and even though i am taking laxatives and stuff to ease the stomach i am still getting occasional stomach pain and cramps and a lot of wind building up. I personally don’t think it is the constipation causing all this as my bowels are opening and i believe it is down to the same thing that is causing every thing to trap when i swallow. It is all guesswork at the moment and we wont know for sure until i have these treatments and investigations. I just wish they would hurry up and not leave me in constant pain all the time. How someone can be in so much pain this day and age with all the modern medication they have is just beyond my comprehension and i pray that it will soon come to an end and i will get back some sort of quality of life even though i will still have to deal with the beast every day.

So much pain at times you pray for death….

Suddenly you awaken from a deep sleep, the left eye begins to water as if someone has switched on a tap and then you suddenly break out into a sweat all over the body. The eye starts to close and your vision becomes blurred, suddenly you feel a sharp pain behind the eye and on the top of your jaw and at that moment you realise you are no longer asleep and dreaming. You are wide awake and don’t even feel tired. The pain then suddenly shoots over the top of the head following the scar on the left side of the skull. The pain then enters the neck and you realise that you are having a full attack. All this happens in seconds but when the pain starts it feels as though it will last a life time. All you can do is hold the side of your face as you try and move around praying for the pain to stop. It’s so bad all you want to do is scream but hold it in as it is still early hours of the morning.

It’s at this point you make your way into the living room and decide to take your injection and pray to god for it to work and abort the attack but the pain is so strong you feel like nothing on earth could stop it. Ten minuets later and you are still wriggling on the floor wanting to smash your head on the ground in hope that you will crack open the head and release the demon that is inside. The pain continues to shoot over the top of the head and into the neck making you feel as though you have something stuck inside your neck in between the bones. The pain then starts to spread down the left side of the back and under your shoulder blade, So sharp it actually feels like someone has cut open your back with a blade. What seems like hours is in reality only 15 minuets that has passed and then suddenly the pain stops as fast as it started and you breathe a sigh of relief.

No matter how many times i go through the attacks it never seems to get any easier even though you know what to expect. The level of pain is so strong you feel as though you are going to pass out or worst. There are times you feel as though you are on the edge of death and can even sometimes welcome death as it means the pain will be no more. I have had to put up with these attacks for years and they never get any easier. I know what level of pain i will get just by the way the attack starts and there are times where eve the injection has no effect on the attack and you end up having to ride the pain for over an hour. I really wish there was something they can do other than take strong medication all the time that also causes you problems and side effects making you feel even worst than you do when having attacks all the time.

Yet another early morning wake up call to add to the diary and another day of aches and pains to endure. This condition is probably the worst i have ever known or read about and it just seems crazy that there is no cure for it. Slowly they are educating people about the existence of the condition and the effect that it has on the sufferers but i can’t see them coming up with a cure any time soon. not in my life time. It doesn’t help that i have this lump in my back that is obviously pressing on nerves in the back just left to the spine as i can feel it from the bottom of the back right up to the base of the neck. This can also sometimes set off my attacks and make every thing worst as when you try and move about it becomes a sharp stinging pain and even when you take your injection and medication this pain always remains and doesn’t get any easier.

Wake up call from the beast and I’m loosing my memory …..

Another early morning call from the beast resulting in over an hour of non stop agony and pain. No matter how many attacks i get i can never get used to the level of pain that you get when you have an attack. There is nothing on this planet that i know of that i can compare it with as it is so painful it even makes me loose consciousness at times and i end up waking up straight back into the pain and the attack. I know i have actually passed out as when i come around and my vision returns my head throbs violently and makes me feel extremely sick. Thankfully it doesn’t actually make you physically sick as i don’t think i could stand being sick at the same time as being in screaming agony.

The attack takes the same route every time and never changes. It starts behind the left eye and goes over the top of the head on the left side and straight into the neck. When i have an attack and for hours afterwards i can feel a swollen ridge over the top of the head that i can only assume is the nerve when it swells up in pain. You also get a feeling like you have a ball stuck inside you neck at the point where the pain enters and no matter what you do it just doesn’t go until the pain has stopped. The worst part about the attacks is that they come on so quickly with no warning and then disappear just as fast. This is one of the main reasons my original doctor used to say it was just a migraine and i was exaggerating the amount of pain. I would love to take my diagnosis letter and shove it in his gob but unfortunately he was signed off from being a doctor and was put in prison due to him sexually assaulting a female patient. He got what he deserves if you ask me.

It is pointless me putting in another complaint about him as it has been many years now since i had him as a doctor and my case was eventually taken up by the practises owner and his ex-partner and wife. She is a great doctor who really knows her stiff but unfortunately doesn’t have a clue about the condition i suffer but as i am under her for other reasons, including drug addiction where i became addicted to every type of pain killer ever invented, I have to remain with her as a patient. I don’t have any complaints about the treatment i have received off her apart from the fact that she is very busy all the time and getting appointments to see her is very difficult and can end up with you having to wait up to a maximum of 4 weeks until an appointment is available. It’s only a week to go now until i can see her about the lump in my back becoming worst and the other problems i have with my health.

I have done so much research about my condition over the last few years i could fill a DVD disk with all the documents i have accumulated. It wasn’t until i was looking over some of the documents and also my blog entries that i actually realised i am slowly loosing my memory. I can only assume it is down to the condition itself or even the medication i am on but what ever is causing it has me worried. I seem to loose quite a lot of information and can’t remember things i have done the previous month. My long term memory doesn’t seem to be effected yet and my immediate memory seems to be ok but for some reason i keep loosing not days but weeks at a time and can’t remember anything i have done in those periods of time. This is scary as you just never know when you could loose your memory completely. I hope that never happens and that it is just a side effect of a medication that will in time improve but won’t get any worst than it already is.

I am hoping that as soon as they take care of the lump in my back and the problem i have eating and drinking i will be able to start the last medication i was on for my cluster attacks. It was the first medication that i can honestly say i could feel that it was working and almost stopped my attacks completely. It is such a shame that i had to stop the medication due to the other problems i was having as i couldn’t risk more side effects making me worst than i was already. I have left messages for my specialist at neurology and asked that they can make an appointment for me as soon as is possible but i feel he will now wait until i have had the endoscopy and other treatment before they continue trying to get the beast under control and try and get my attacks into remission. Let’s hope i don’t have too much more time to wait and that it will all be taken care of before the end of the year. 

Cluster Headache Awareness Poster 2014

This is the latest poster to be seen flying its way around Facebook and other online media sites to try and help bring awareness to the condition. Thankfully even the TV media companies have started to show information on popular television shows such as THIS MORNING on ITV, the more coverage the more people will understand!

Another attack waking me in the early hours ….

Again i have been woken by an attack from the beast starting my day in agony and pain. Sometimes i wonder what is the point in having an alarm clock when i end up waking up 4 or 5 hours before the alarm is even due. Every time i get woken by the beast a little more of my energy is drained away. I am only managing a couple of hours sleep per night not only due to the attacks but it is also down to the pain in the back that i am getting because of the small lump i have on the lower left of my spine. I am sure the lump is pressing on one or more of the main nerves that goes up the spine into the neck as that is always where the sharp shooting pain seems to go and also effects the rest of the left side of my body. I am getting sharp cramps in my left leg and left arm as well as the skin on the left side of the body feeling like it has been scolded or burnt as it makes it sting like nothing i have ever felt before.

You could say i am used to strong pain due to all the attacks i have had to put up with over the years and can honestly say i know what bad pain feels like and the pain i get in the back is very bad as it is at the same level as my attacks and that is why i believe it is a nerve that is being effected. I could be wrong and it could be something else that is causing it all but it seems strange that when the lower back hurts around the lump the other pains start. At least i only have a week left to wait until i can get to see my own GP and see what she says about the lump. I am still awaiting for the scan that she has referred me for and also the endoscopy the specialist referred me for when i told him about the food and liquid trapping when i try and eat or drink. It will be interesting to see if i am right about the food trapping and the wind and bloating it keeps causing not to mention the indigestion and uncomfortable feeling all the time.

I do feel a little better than i have over the previous weeks and i don’t feel as though i am going to die like i did at the start of the month. Why, when i walked and tried to do anything around the flat, my energy was draining away and making me feel as though i was going to collapse i still have no idea but at least i don’t feel as bad as i did before. I am not getting as many chest pains on the left side and my breathing has been fine. I am bringing up some nasty flem every now and again and when i spit it out into the sink or toilet you can see bits of black and dark green so i am assuming this is down to my smoking so i need to cut down. It is possible i had what is called a silent chest infection as i didn't have any cough or breathing problems yet i am bringing up some nasty stuff off my chest.

I used to smoke cannabis to help with the shadows i used to get due to the CH and have been a smoker for many years. I have now had to give up completely as when i try and smoke anything i end up becoming very ill and the pains increase so it’s just not worth it. I suppose that's one way to give up. I would never have imagined myself in this situation years ago but now i am a CH sufferer and have other health issues on top i have had to make some drastic changes to my lifestyle and i am just praying that the bad luck i have with my health will come to an end and i won’t have any more surprises around the corner.

Depression become out of control…..

Thankfully i was actually feeling a little better yesterday and didn’t drain of energy when i walked around the shop and to the chemist as i was doing. As to what was causing me to become so weak when i tried to walk anywhere is still a mystery but i am thankful that i have started to feel a little better. The back is still having problems and giving me a lot of pain when i move but at least i am not almost passing out. Draining of energy every five minuets is very scary especially when you don’t know what is causing it all the time and also being in pain can sometimes make you feel very weak. I just wish the lump in my back would stop what ever it is doing and ease the pain. It is possible that it is effecting on of the main nerves that effects the entire left side of the body as when i do get the pain it is not just in the back it is also in the left arm and leg. I get cramps in different places and also sharp pain shooting up the back.

The pain in the back that goes all the way up to the neck can sometimes set of my CH and end up giving me several attacks one after another and leaves me in agony for hours. I can’t wait for the hospital to arrange the scan and find out exactly what is causing all the problems. The last time i saw the doctor she referred me for a scan of the lower left back to see what is going on but when i went up to the hospital regarding the chest pain i kept getting and to have blood tests to see if the heart was ok, thankfully it was, they decided to x-ray the lower left back to ensure it is not the bones that have a problem and i was told by the specialist that there was nothing wrong with the bones and to go home and tae pain killers. Not the answer you would expect from a professional but i can understand that it wasn’t an emergency and they didn’t want me taking up a bed in the A & E.

I still think they should have investigated the problem to try and find out what it was that was causing me to wipe out when i tried to walk to the shop and also why my back was in so much pain but they just weren’t interested in my problems and couldn’t wait for me to leave. I am sure it is down to the fact that i am on Methadone as when i told the doctor i was on it you could see her attitude suddenly change and after that point they didn’t want to know. When i tell people they say “They can’t do that they are professionals” but when you see it with your own eyes you can’t believe the attitude they have to someone on the methadone, they immediately think “OH, another druggy after drugs”. If that was the case the hospital would be the last place i would go to try and get drugs.

I suppose it is my own fault as it was down to me for self medicating and getting myself addicted to pain killers, morphine and heroin but when you have a doctor that is telling you the CH attacks are your imagination and end up putting you on drugs that are so strong you start hallucinating and hearing things and end up with you being sectioned for your own safety, you loose all faith in your doctors and end up trying to deal with things yourself. It was then, when under section, the doctors noticed the pain was real and that i was on the wrong medication and in the wrong place so they sent me home and started to get me the real help that i so desperately needed. It then only took another 5 years of investigation before i was finally diagnosed with the condition and given the correct medication to deal with the attacks. In total it was over 10 to 12 years of hell that i had to go through before getting the correct help.

Now i am in a similar situation with a new problem or even a couple of problems. I have a lump on my back at the base just left to the spine that seems to be hitting the nerves and causing me agonising pain. I have something that is causing my food to trap including liquids and causes me instant indigestion and my bowels keep playing up and i have constipation like nothing i have ever experienced before. The constipation is probably down to all the medication i have been on and especially down to pain killers that is why i have stopped taking the strong pain killers as it just makes the constipation even worst so i end up having to ride the pain each day.The only pain killers i will take at the moment is paracetamol or ibuprofen bit the ibuprofen can cause indigestion problems so have been sticking with only the paracetamol and have to watch how many i take as that could also cause problems if i am taking too many or take them for a long period.

I still have another week and half before i can see my own GP and god knows when my next appointment with the specialist will be. I have tried t get hold of the specialist but he is so busy no one seems to be able to pin him down and i have now left 3 messages for him with no luck or contact what so ever. I really need help to get these things sorted so i can start to concentrate on my condition again and get things under control. I haven’t even been able to go out fishing things have been so bad and i have been in so much pain. I don’t go out of my flat and can’t even do my own shopping it is really getting to me now. My depression has become very bad and i find myself battling with unwanted thoughts and feelings on a daily basis and i am afraid that if i don;t get help soon it is only going to get to a point where i no longer have control over my faculties.

Another attack and still in agonising pain ….

After waking yesterday with no attacks and feeling slightly better i thought i was due for a break from the beast but then it happened again this morning in the early hours. 3am the beast attacked with a ferocious attack and pain like no other. The attack started behind my left eye and straight over the tope of the head into my neck. I suddenly burst into sweat like someone had turned the tap on and within seconds my clothes were soaked. My left eye started to close and the lump on the top of the head around my scar become so swollen i had a ridge across the top of my head.

This in turn started the back and neck to hurt like crazy and within minuets the entire left side of my body was in agonising pain and it became so bad that my skin felt as though it had been scolded or acid had be placed on it as it was just stinging so much. All i could do is scream in pain and agony and rush to take my injection praying that it would abort the attack. It took about 10 minuets before it took hold and eased the head as fast as it started. unfortunately it didn’t stop the pain in the back and over the left side of my body, this continued for at least 2 hours before i was able to move again with out pain.

This last month has been a complete night mare with all the attacks and pain i have been getting and still no help has been arranged for me. I am still waiting for the appointment to have the endoscopy to see why my food and liquid gets trapped all the time and why it gives me indigestion as soon as i eat something. I am also still waiting to see my GP about the lump in my back and find out why i haven’t had the appointment to have it scanned to see what is going on.

It doesn’t help having this heat wave at the moment as i feel constantly uncomfortable and sweating all the time/ When i am in pain i then sweat even more making me feel constantly dehydrated and end up having to drink 2lts of water every day. My stomach is still bloating up and i have wind pockets below my chest that sometimes can cause agonising pain as wind hits the different internal organs and constantly makes you feel very uncomfortable. I just wish something would happen soon as i don’t know how much more i can take it is driving me insane.