A massive realisation…

Whilst having to deal with the onset of yet another attack, a massive realisation hit me today! I started to think back to the meeting at the hospital, and the questions that were asked and how we looked at the history of my condition. Suddenly! Key moments in my life have suddenly made so much sense when at the time i didn't really understand them.

When abroad, in Cyprus, i had a massive nerve attack and thought it was a tooth on the upper jaw on the left hand side and thinking it was rotten, rushed into the dentist, yet the dentist couldn't find anything wrong, but i was in extreme pain so they numbed me up and pulled the tooth anyway. Which i should add “hurt like hell”, and took me two days to recover.

Then again, several months later, a massive attack! Rushed into what they call a “Polyclinic” in Cyprus, it is like a private hospital for tourists, and they thought it was my sinuses, drugged me up to the eyeballs and sent me on my way after departing with several hundred pounds of my money.

Another when i was again rushed into the “Hospital” in Cyprus, told i had a damaged nerve and again was drugged up to the eyeballs and sent on my way. ( I can see a pattern starting to appear),

When i returned to the U.K. was told for years i was suffering migraines and it was all in my head the level of pain. Even to the extreme i was admitted the a mental hospital for my own safety. Then when a doctor seen one of the attack’s they realised it wasn’t just in my head.

Then to finally get a diagnosis, after 10 years of struggle and made to feel so low you couldn’t understand, and also to get a name for the condition was an amazing weight lifted from my shoulders, “CH”, “Chronic Head Aches”, why they call them that i don't know, as the only way i can describe the pain, is imagine all your tooth aches and head aches and bone breaks and pains all happen at the same time, but not just lasting for a moment, no it has to last at least 20 minuets, constant sharp pain increasing every second. Then maybe you’ll understand of just 10% of what it feels like.

It was a  great relief to also stumble across the web sites for the support groups that try to help other people like me , that suffer CH, and help them understand it and how to try and control it. There aren't many people that actually know this condition exists i am now finding out, even my own doctor has had to learn and be prompted by the specialist on how to treat me, and fair play to her she is trying her best. My specialist is also sending her e-mails with all the info needed about the condition so they are all trying for me. I read the story's of other people who suffer chronic like me (on a day to day basis, not just once in a while) and hear the story's of their struggles to get their medication right to enable the attacks to go into remission (go to sleep so to speak) and then only to come back later down the line, even after years.

Then a wave suddenly hit me today, knowing this information and realising that i may have this condition for the rest of my life, struggling day to day to control the pain and attacks, juggling injections and oxygen and different drugs just to be able to sleep a full night pain free. Tears started to roll down my eyes of the realisation of how bad this condition is. Then i kicked my self! Think! There are other people out there worst off than me, struggling day to day with pain from cancer and other conditions, that most, wont actually live through, and there was me having a “feel sorry for” moment.

I have to admit to myself though, i don't know if i have got the strength in me anymore to deal with this condition on an every day basis but all i can do is try and hope, to god, that something will put this beast to sleep once and for all. Each day i have to try and grow stronger and try and beat this thing, surely to god there has to be something that will sort it out and i will find it. The specialist was nice with his manner, but seemed confident enough that they will eventually find the right thing to control it , its just going to take a bit of trail an error, but when you get this much pain, lets just say you can get a little impatient! (Injection time, its starting to get too much.)

The Beast is back….

I continued to have a pain free day yesterday and only had a sore neck when ever i touched it or moved my head too quickly but apart from that i didn't get any other type of pain at all. I spent the day playing on the computer taking things easy as i didn't want to set off an attack just in case there was one coming. Well i was worrying for no reason as one didn't come so i decided to get an early night to catch up on my sleep and make sure i got plenty of rest.

It must have been about half four in the morning when it happened, I stirred in bed then suddenly my eyes were open i was wide awake, i couldn’t feel pain straight away so i just lay there wondering why was i wide awake when i wasn’t getting an attack and then it happened. the beast decided to come back.

A sudden sharp pain in the neck followed by the shooting pains across the top of the head and behind the eye, quickly followed by that horrible feeling of pressure and then the eye started to water and close. I jumped out of bed in agony, raced into the living room to get my injection and sit and breath in the oxygen. The pain continued to grow in strength and once again it was pointless taking the injection as it just wasn't strong enough to stop this attacks, this was one of the biggest attacks i have had for a while. All i could do was rock in the chair whilst breathing in oxygen frantically as i was in so much pain. My eye was swollen and the side of my face so sore i couldn’t touch it with my hand. I tried to massage my head and my neck but because it was still bruised and sore from the injection the specialist had given i couldn’t even do that.I was in turmoil.

I looked up at the clock on my wall it said it was a quarter to five in the morning and thought my god why me why was i awake this early suffering. The next thing i know when i looked up again it was half seven in the morning and over two hours had passed in pure pain and agony. It was like it didn't want to stop. I had just broken out into sweat, pouring from me, making me feel icy cold. I could also feel the cold weather on the top of my head so i turned on the electric fire and sat close to it so my face was level  with the fire and started to heat up the side of my face. 

I have used heat treatment before to counter act the pain so i was hoping the same would happen, and surely enough as like it was clockwork i slowly moved away from the fire so the heat slowly decreased and low and behold the pain also reduced with the heat. My god this was a painful attack. Well it look like i only managed 2 days of being pain free from the injection, i cant say i am surprised as the specialist at the hospital did warn me not to expect too much. So it looks like the beats is back to stay for a while so it time to wrap up and take my meds.

Even though i have had plenty of sleep i feel absolutely exhausted, it is surprising but these attacks don't half take away your energy and strength. They seem to take everything you have in you just to endure the pain and agony so i am now waiting for the feeling of pressure to ease a little and then will try and have a nap later in the morning.

Pain free but will it last?

After a great days fishing yesterday i was completely shattered so decided to have an early night. I was a bit nervous about going to sleep as i keep expecting my head to start playing up or to start feeling pressure on the left hand side but nothing. So far so good!

I have woken this morning again with no pain so hopefully i will have a pain free day. However, i am getting pain in my back right at the bottom of my spine! It could just be from sitting for a long period fishing yesterday but it feels exactly the same as it does after i have had a big attack. I also moved my head quickly to the left to see something on TV whilst sat at the computer this morning and it cracked about 3 times and then i felt a small twinge where i normally get the tell tale sign of an attack starting.

I tried massaging my neck gently as not to irritate anything and start any pain and i can feel where the specialist injected me it is very sore and tender. I know for sure the injection worked as by now i would be in extreme pain and agony but its not the case. As to how long this injection will last i am not sure, as the neck seems to be getting sorer by the hour but still hasn’t started an attack so all i can do is take it easy for the next few days and see what happens.

The specialist told me they are arranging a brain scan for me (actually means i have a brain lol) and increasing my medication again to see if anything works. If it doesn’t then they will take me off the one type of medication and start me on another, “so its going to be trial and error for a while”, he said, “but it will be worth it in the end”, i will be able to live a normal pain free existence once i have it all under control.

Has the Injection worked?

Well i have to admit when the specialist gave me the injection into the nerve at the hospital i was a bit sceptical as to whether it would work or not. I decided to spend the day fishing with my step-farther and have to say we had a great day fishing the local lake. I managed to catch quite a few fish which made my day.

I have yet to have an attack or get the shadow over the head since i have had the injection. The specialist said it may relieve the pain for a couple of weeks or a couple of days and then again it may do nothing but so far i think it has done something as i don't have any pain in my neck like i normally do and i haven't had any sign of attack, even with the bad weather which normally sets it off, there has been nothing.

It is still early days so i am not getting my hopes up but i have to admit, even one day pain free at the moment is better than nothing. Lets hope it continues through the night and tomorrow.

Woken up Pain Free…

Last night i slept like a baby. The injection the specialist gave me must have done something as i don't have the shadow today and no sign of pain, YET!. The weather is grey and horrible and normally i am in agony when it is like this but today i haven't even had a twinge yet.

I feel like a new man, until the pain comes back that is. So it fingers crossed time and hope that this injection has done the trick and put them into remission for a while. He did say it mat last a few days or even a couple of week or it may do nothing at all, but i am sure it has worked. I know my body and i can tell the difference straight away.

Well is a grey, wet and windy day with a couple of showers forecast so i am going to brave the weather and go fishing. No i am not crazy, some times the best time to fish is when it is grey and overcast, that's when you are in with a chance of catching the big ones. LOL

So for now its fingers crossed and hope for the best and lets see if this beast had been beaten once and for all or if he’s just sleeping?

Visit to the Neurologist

Well that was a nice meeting i had at the hospital with the doctor. Put me at ease straight away and then we discussed what was happening. I explained how i was coping each day with the attacks and taking the injections, but it is very hard to explain to someone how much pain you are in unless you are in pain at the time.

It is very difficult to know exactly when to take your injection as you could waste it on a small attack and end up suffering a massive one later in the day. But i have to admit the injection works every time. It is a shame you are only allowed two per day but there must be a reason so i have to stick to it. The doctor has advised me that they will increase my medication of the Pregabiline up to the maximum dose allowed and then see after a few months if it is helping with the episodes. We talked about the use of oxygen and how it was helping to reduce the amount of time the attacks last and i also explained how the mask keeps letting out too much so you have to seal it off to ensure you get a proper flow of oxygen into your system when having the attack.

He explained clearly how it will be trial and error to get the medication rite as every one suffers in different ways and they react to medication differently. One type of medication may work for one person but not for the other so we are in unknown territory at the moment as the trials continue and we have to see what types actually help me.

The doctor then gave me an injection into the nerve at the back of the neck to “hopefully” stop the attacks or reduce them. He did explain it may not do anything but its worth a try. I would say anything is worth trying when you are in this much pain. I have to say his aim was spot on, he hit the nerve with the first shot and i felt a small electric shock feeling travel along the nerve to the front of the eye and then it stopped. Then all of a sudden i felt pressure build up on the left hand side of my head and an attack started. It wasn’t a full attack as it only lasted a few minuets and the pain wasn't any where close to what i have been experiencing, but i know for sure he hit the rite nerve as it is exactly the feeling i get when i do have a full attack. Lets hope it does something to help as a break from these episodes would go down a treat rite now as i feel so tired all the time.

Getting ready for the Hospital…

The head continued to play up yesterday with my last attack lasting over an hour and half. I have to say i am so happy that i am at the hospital today! At last i will get a chance to ask some important  questions about this condition and how to manage to pain. Yet again i had attacks during the night and early morning hours waking me up. At least this time i managed to force myself back to sleep other wise i would be absolutely shattered for my appointment and i didn't want that.

I have learnt so much, in the last few months, abut managing this CH and the pain attacks but i still haven't managed to solve the problem with my neck and the swelling that comes with it. My neck seems to be getting worse and worse as time goes on. Its like having a grinder inside my neck that is constantly grinding the neck joints away making it feel saw and painful all the time. I know in my heart its nothing like that and its probably caused by a swollen or damaged nerve. But until i get a full diagnosis on it i wont know for sure.

Another thing that has been bothering me is the pain when i walk. I am not talking just normal aches and pains, like you get when you have arthritis in the joint (all though that can be just as bad), but shooting pains up the front of the legs(you would think it would be the back) into the bottom of the back and then up the spine to the base of the neck. Just lately after having my attacks i have been getting these pains more regular and now even when i get PF days i can still sometimes get the aches and pains in the legs and back, strange eh!

Well i had a good rest yesterday even with the attacks i was having so i am recharged for my hospital trip. Fingers crossed and lets hope for some good news.