More attacks during the early hours.

Once again i have started being woken up in the early hours by a visit from the beast. Just as the temperature seems to drop between 2 am and 3 am i seem to be effected and i get a wake up call from hell. the attacks are always the same and seem to start from the top of the jaw on the left side of my face , travel up behind the eye and over the top of the head reaching into the back of my neck. At first when i open my eyes i have a few seconds of confusion as to why i have suddenly woken up and what is happening and that when the pain kicks in. just as the brain realises i am about to have an attack it starts and the pain begins to shoot over the head. You would think, after having so many attacks, that i would get used to them by now. No matter how regular they are they always seem worst than before and always seem more painful. Every time i have an attack i always end up drained of all energy. The high pain level seems to take everything i have got to be able to handle it and ride the pain. Even when i take my injections i still have to endure the pain for a certain amount of time before they take effect.

The pain in my neck has also been getting gradually worst as time goes on but at least i am now under physiotherapy. I had my assessment the other day and they told me there wasn't really much they can do for me apart from trying small exercises to help manage the pain and improve my movement. They are concerned that i am shut away in my flat all the time but thats something i have to address at a later date as for the time being i have no choice, i am either in too much pain to move around or walk anywhere or i am in fear of having attacks whilst out and about so no matter what i do i just cant seem to win at the moment.  I do try and get out and go fishing when ever i get a chance or i feel well enough but unfortunately its not as often as i want at the moment. i will make the effort to get out more often and do some more fishing, at least once a week starting next month as with the summer comes more pain free days. I am just hoping that when winter returns i don't end up having to deal with more attacks as i usually do. So far the attacks have reduced to at least 50% less than what i was getting and i am praying to god that they will say that way.

After being told by the specialist at the hospital there isn't much more they can do for me now apart from help me manage my pain i have found out there is still a couple of medications that i can try as a last resort. They also said they could refer me to London for the specialists, who are actually working on this illness, to take a look at me and investigate the reason why i have become a chronic sufferer and why it has stayed that way even though we have thrown all sorts of medication at it to try and get it to go into remission. It does give me a little more hop that still something can be done and that i could get these attacks under control and manage my condition successfully  They also mentioned they wont be able to give me any more treatment until they get this hiatus hernia sorted out as it is stopping me from having these other medications so i now have to arrange an appointment with my new doctor and try and get her to expedite my appointment for the hernia and chase it up so we can get it sorted once and for all. The hernia has become very problematic and is causing me a lot of pain and discomfort on a daily basis now. I cant eat or drink properly with out things trapping and almost chocking me and also giving me sharp stinging pain in the chest.

Even though i still have many health problems and have a long way to go before i start to claim back some sort of quality of life i am feeling a bit more positive than i normally am. I have been having difficulties with the bi-polar and feeling very low a lot of the time but i have tried my hardest to shrug it off and just get on with things even though i just don't feel like it. After going fishing the other weekend i felt great when i got home and its crazy to think that no matter how bad or low i feel when i go fishing i always seem to forget all about it and feel great for days after my trip. This i one of the reasons i love fishing so much and i really can't wait until i get to go again so i am planning a trip in a couple of weeks or maybe even sooner. I am just hoping the weather is kind to me and i get the chance to get out very soon.

Nothing they can do! I have to live in agony for the rest of my life.....

Once again the beast returns and the attacks start in the early hours of the morning constantly waking me up and making me have to deal with pain levels that are just beyond your imagination. Praying to god each time for it to end and when they are at their worst you wish for death to come swiftly so you don't have to suffer any more. These are feelings I have to deal with on a daily basis being a chronic cluster headache sufferer and find that every day I have to deal with different pains and side effects from medication always hopeful that one day it will get better or my attacks will eventually stop.

I had my appointment with the specialists at the hospital in the neurology department to discuss what was happening and how i was getting on with my treatment and medication. The amirtriptyline i am now on seems to have reduced the amount of attacks i get and i am finding i have more days with out any attacks but still have to deal with the beast ion a daily basis. The specialists are happy they have now found a medication that has worked for me even if i am still a chronic sufferer and i am pleased that i don't have to go through any more experiments with different medication causing side effects and allergic reactions. All though it was good news in one respect they have now told me there is nothing more they can do for me. I now have to learn to live with the condition using injections, oxygen and medication to control the attacks and have to deal with the pain the best i can. Being told there was no cure i could understand and accept and knowing there wasn't much known about the condition was also easy to understand but when they say they can't help you anymore and you have to live the rest of your life in agonising pain is a huge shock to the system. They said i will still be able to go into hospital if things become unbearable and i will be able to get treatment if the attacks become constant again but they have said if the medication stops working and i cant get them under control again all they can do is refer me to London and hope for the best. 

They told me that there isn't many "chronic" sufferers that last as long as i have. Many have become episodic again and get bouts of attacks and the others have committed suicide and that's why this condition is known as "suicide headaches". Its not a very nice feeling knowing that people who suffered as many attacks as me just gave up in the end and didn't want to fight the condition any more. Its a sad fact that this condition has such an effect on peoples lives as it has on mine. Ever since i became chronic my life has just been destroyed. Yes i do get to go fishing every now and again and i still sit and enjoy watching TV at home but i still feel like i am house bound, afraid to go out in case of a major attack. I try and put a brave face on when ever i am out and about but in reality i am scared of what could happen to me if i have one attack to many. When i am fishing people don't see when i am stuck inside my bivvi hiding as i ride the agonising pain out, trying not to scream in agony and bring attention to myself. The pain below the surface and the mental stress the condition places upon someone is really bad and sometimes i wonder how i have managed to fight as long as i have. I wish that one day i would turn back to an episodic sufferer but it doesn't look promising as the attacks just keep on coming.

Then i have to deal with the other health issues that have all come about from the medication i have to take regular. A hiatus Hernia causing me chest pains that take my breath away and constantly feeling as though i am having a heart attack. Not to mention the amount of times they have rushed me into hospital thinking exactly the same thing. The pain i get down the left side of my back from the damaged nerve in the neck. Waking up in the morning with a dead left arm and leg and thinking i have had a stroke as i wait 10 to 20 minuets for them to come back to life. The constipation and IBS caused by the large amount of medication i have to take daily and the stomach pains that go with it. Constantly waiting for appointments to be arranged and for treatment to begin, watching the post each day praying a letter from the hospital will arrive so i can fix some of the problems i have but nothing comes for months, and sometimes years. It's crazy to think that 20 years ago i was living a normal life and enjoying what the future had in store for me looking forwards to things about to happen. Now i wake up each morning feeling sad that i have woken and dread what the day will bring. The only spark left in my life is my fishing and even that has become limited to when i can get out and go enjoy the only thing left that i can do with out problems.

I still cant accept the fact that there is nothing that can be done about my condition and that i will have to suffer for the rest of my life with no hope of ever getting better. All i can do is pray the medication will continue to work but whilst i have other problems like the hernia its not looking good as because i have to take tablets for the hernia to allow me to eat and drink i have had to stop the medication that reduces my attacks. The attacks have already started to slowly increase in number again and will continue as time goes on whilst i am waiting for them to arrange an appointment for me to get the hernia sorted. It's crazy how they can leave someone suffer so much pain with no end to it in sight. I say to myself every morning that i will fight this with every breath i have in me and every bit of strength i have left but i wonder just how much longer i can go on. Ch - Cluster Headaches , otherwise known as Hortons Neuralgia is one of the worst illnesses i have ever come across. its up amongst cancer and aids and is one illness that completely strips you of any quality of life. My heart goes out to all the others out there who are suffering like me and to all the other seriously ill people with conditions that have totally changed their lives. Until now i hadn't realised how bad being seriously ill was and hadn't appreciated just how strong these people are who fight on and try and get on with their lives.