Attacks are increasing and health going down hill, but its chin up and get on with it.....

The last couple of months has seen a huge decrease in the number of attacks i have been getting on a daily basis. it started when i was put onto Amitriptyline on a regular dose of 10 mg. I ended up having to stop this medication as the Hiatus Hernia i have has become so problematic i can no longer eat and drink with out pain and chocking and having to massage my chest to make things pass through. I ended up having to take Domperidone which is used to help food and liquids pass through the upper stomach a lot quicker than usual. This seemed to help and things became easier but the attacks didn't come back to the level they were before and i was grateful that they continued to decrease in number.

I have had to wait a while for an appointment to see how bad the hernia has become and during this time i have hod loads of strange things happen and problems arise. I have been getting reoccurring infections of the chest and throat and constant fungal infections within the mouth including oral thrush. I have been getting rashes that appear from no where and the latest thing is to do with my walking. I don't know if its from the attacks i get or a side effect of something else caused by the hernia but every time i try and walk to the shops i can't seem to walk very far with out being in extreme agony. The muscles in my legs feel as though they are both constantly tense and the legs hurt up the front and the back of both. The pain turns to a burning pain when i try and walk that little bit more after they start to hurt and what is causing it i really don't know.

I reported it to the doctor a couple of weeks ago and she rushed me up the hospital to have both of my legs scanned in case of a blood clot that could be causing it but nothing showed up.  It doesn't matter if i have been rested for a while or i am doing something strenuous it seems to come straight away after 30 seconds of walking and takes a good 10 minuets to ease off after i sit down and take the weight off my legs. If this wasn't bad enough my attacks have decided to return and once again i am getting woken by the beast in the early hours. I am booked to go into hospital once again on Thursday for an endoscopy to see how bad the hernia has become and they will then tell me exactly what they are going to do about it and whether i need an operation to correct it. 

I also have an appointment the day before with the physiotherapist who has been trying to help me by using small and simple exercises to ease the pain in my neck and back but unfortunately they haven't helped at all and in fact has started to make things a lot worst as i am now in constant pain with my back all down the left side and every time i do these little exercises i end up in more pain. They also seem to be aggravating my cluster attacks so when i see her next i am going to have to insist we stop them for a while until i can get some sort of control over the things that are going on. Its bad enough having to deal with one problem at a time but with me it seems i always have two or three different things going on all the time and this is really making my life difficult.

My luck as far as my health is concerned has been really poor and i seem to be getting worst not better.l Every time i think i have one thing under control something else comes along to mess things up again and no matter how hard i try and manage these things i just cant seem to get a grip of things. My depression has been all over the place lately and sometimes i wonder how on earth i have managed to continue up to this point. It doesn't help the amount of medication i have been having to take all the time. Not only has it messed the body up and the bowels but also my stomach and i am now paying the price for taking so many tablets. My stomach feels like a washing machine constantly tumbling and bubbling with wind. I am constantly bloated which also effects the hernia and causes me a lot of pain just above my stomach and under the chest not to mention the amount of cramps i get from the bowels.

I just wish i could have a full MOT and once sorted i wouldn't have to take another tablet and could just get on with my life. Ever since all this started i feel as though my life has been taken away from me and i now live in a permanent cocoon keeping me from the outside world and enjoying what life has to offer. I am watching things just pass me by, watching other peoples families grow and children grow up and i feel like i am missing out on so much yet there is nothing i can do to change this.  I try to hold on to the small things i still have such as my computer and the web sites i now run and also my fishing when i am well enough to do it. These are the only things that are keeping ,me sane at the moment and with my fishing eb site growing rapidly and becoming more and more popular each day it gives me something to fill my time and keep me busy.

Maybe one day the attacks will ease completely and the cluster headaches will go into remission or become episodic once again and i would only have to deal with them once or twice a year for a short period but that seems to be wishful thinking. With the attacks once again on the increase and my health rapidly becoming worst i just don't know what to do in order to improve my situation and can only hope and pray that the treatment i get over the next couple of months will help a little and ease a few things off for a while. Lets hope i can get out and do a bit more fishing over the next few months as i have missed out on so many trips this year due to illness and pain so i need to make up for lost time and force myself to get out and stop shutting myself away in the flat in fear of attacks all the time. I am planning on a fishing trip in the next few days and weeks so fingers crossed all goes to plan and nothing comes along to mess it up.

It Don't Rain, It Pours..... Time for an Operation!

Well every time i think my health is improving something happens and i am back to square one. Just as the attacks started to ease off and become manageable again the hiatus hernia has decided to become so problematic that not only am i getting pain daily and problems with eating and drinking but it is also causing infections that keep returning once treatment has finished. Talk about having bad luck when it comes to my health. Each time i eat something or drink it seems to trap at the top of my chest and doesn't pass through properly. This then causes me stinging pain and i have to massage my chest and push inwards with my hands until i feel the hernia move and pop and the food or fluid finally passes through bubbling as it goes, which feels really strange. This is the only way i can eat or drink.

Again my eyes have started to become sore all the time and i am getting strange rashes appear over the body and the skin sometimes becomes red and sore down my arms. This is accompanied my a feeling of weakness and tiredness all the time and a bad case of oral thrush that i have been constantly treating now for well over 6 months. I visited the doctors once again and they have now done an emergency referral to get the hernia operated on and sorted out once and for all as its affecting me so badly. Again it has caused an infection in the chest area but i cant have antibiotics as i have only just finished 2 different types and by giving me more will cause an immunity to them so my body has the fight it naturally until i have the operation. The thrush is so bad it has effected my taste and everything tastes disgusting and my mouth constantly feels sore.

Suddenly i am having problems walking and can no longer walk to my local shop with out my legs turning to jelly and becoming so painful i can't stand. The doctor rushed me into the hospital in case it was a clot that had appeared in the lower legs but everything was clear so it looks like its the nerve that is causing me pain in the back. It seems like its effecting my walking a lot worst than usual. I have been getting a few bad cluster attacks over the last week as we have been having some strange very hot weather. Although the temperature is up and some days it is very sunny it still seems very close and there is an electrical feeling in the air as though a storm is on its way and its this that seems to effect my head and nerve and bring on attacks when i least expect them.

I am hoping the hospital wont take too long to arrange the appointment for the pre op and then the actual operation itself. Don't get me wrong no one wants an operation and least of all me but i know its going to improve things at the moment. I am so grateful technology and medical treatment has improved in leaps and bounds over the years as the doctor informed me 10 years ago they would have had to split my chest open to operate and the hiatus hernia resulting in recovery and hospitalization that could last for months or years. now days they do it through keyhole surgery and i could be in in the morning and back home the same evening. The one thing i am not looking forwards to is having the camera down the throat again so they can see the position of the hernia and just how bad it has become. the last time i had it was bad enough and couldn't stop gagging so i am praying it will be done quickly and things will be solved sooner rather than later.

The early morning wake up attacks are doing my head in!

Even though i have been getting less attacks than i usually get so far this year i am still struggling to cope with the early morning wake up calls from the beast. Every morning for the last 2 months i have been woken up at 2 am or 3 am with some massive attacks starting as soon as i open my eyes. I think having to sleep at an angle because of the hiatus hernia is aggravating the cluster attacks and making the morning one more regular due to lack of sleep and discomfort. I have tried laying flat for a couple of days to see if it helped but nothing changed and all that happened was i was wheezing as i breath due to the hernia blocking my airway and this kept waking me up every hour through the night. Thankfully i am due to see the doctor on Tuesday as i really need them to chase up the treatment for the hernia as now food and drink is trapping all the time and every day i am in agony with soreness and stinging pain in the chest. Every time i eat and drink and swallow it just traps there and i have to push on my chest hard for it top pass through and sometimes i have to massage it for a while as it can be stubborn and not let anything pass.

 It has started to get worst over a period of time and if its ;left i think i will have problems eating and drinking permanently and it will eventually end up with me being unable to eat or drink anything and then i could be in real trouble. I had to cancel my last appointment with the Physiotherapist as i was in agony after doing the exercises that she gave me to help my neck and back as it just seemed to make my attacks worst. I started to get severe attacks during the day and they kept on returning so i ended up cutting the amount of exercises by half to see if it would help but still i was getting problems. I am due to see them again on Wednesday so they are gong to have to see if there is something else they can recommend as these exercises seem to cause me too much pain. Its bad enough i have to deal with pain every day anyway so i really don't need it being made any worst than it already is. Lets hope there is something else i can do to help me manage all the pain. 

The rest of my treatment is on hold at the moment as there is nothing more they can do until this stupid hernia gets sorted out. A Hiatus Hernia is probably the worst kind and since i have had it all sorts of strange things have been going on. i have become allergic to things i have never been allergic to before. I have been getting severe chest pains and been rushed into hospital more than 5 times with them thinking i am having a heart attack and it turned out to be the hernia playing up and causing me pain. I have been getting strange rashes and sore eyes for no reason as though i have suddenly developed hay fever and my skin suddenly becomes bright red and sore for a short period for no reason at all. All this started when the hernia started and since then i have been living a nightmare. I am praying they will do something about it the next time they shove the camera down my throat to see if it has become worst or to see what else is going on.

 The constant infections and oral thrush and fungal infections in the chest is really getting to me so i pray to god it will all soon get sorted. The trouble is over the last few years the hospitals have become so busy and understaffed its crazy waiting months and even years for any appointments or treatment so god only knows how long i will end up having to suffer. It took long enough to get my appointment with physiotherapy, it was just over a year and 3 months before i received the letter inviting me to call and book my assessment appointment and it was classed as urgent as i was referred whilst i was in hospital being treated for constant cluster attacks and severe neck pain. The last time i saw my neurologist they then sent me a letter instructing the doctor to expedite my appointment for the hernia so i will take that with me when i go to see the doctor on Tuesday and hopefully they can then get something arranged. Until then i just have to wait and suffer in silence. 

Waiting over a year for an appointment with the physiotherapist

After waiting over a year for an appointment with the physiotherapist i finally managed to get seen only to find out there isn't really much they are able to do for me. The damaged nerve in the neck and the back is just way to damaged to do anything with. I can't have an operation to repair it and i cant get treatment to make it better so i just have to put up with the pain and trouble i am getting on a regular basis. They can help me manage it a bit better than i have been by using very small and easy exercises that will help ease the tension in the muscles around the damaged nerve. They have given me 4 small exercises that should do the trick and i have to do them every day.

I started the program with no trouble gradually building up over the first couple of days but than after a week of doing it i ran into trouble. All of a sudden my attacks started to become regular again and i had to put up with 4 huge attacks one after another. This is because i aggravated the nerve in the neck and the muscles either side causing it to set off my cluster attacks. I really tried to get to grips with the program but it just seems to cause me more pain and trouble than its worth. I am scheduled to see them again in a weeks time so i am hoping there is some other way we can help my condition and help me to manage all the pain and problems, that are slowly getting worst, with my neck and my back.

Every day i experience sharp shooting pains up the left side of my back just left of the spine. This pain shoots into the base of my neck on the left side effecting my shoulder. I have also been waking up with a complete dean left arm. Its not from cutting off the circulation in your sleep like i have actually done a few times and within seconds get the feeling of blood rush back into the arm and tingling from the hands up the arm. This is different, it actually stays dead for several minuets and when it does come back to life i don't get any tingling sensation i just have a dead arm feeling in the upper muscle of the left arm as though someone has punched me in the arm really hard. Why my arm keeps going dead is anyone's guess but i am assuming it has something to do with the nerves on the left side of my body and the problems i have been having with my neck and my back.

My neck is as painful as it has ever been and keeps flaring up and causing me a lot of discomfort. When its at its worst i can hard;ly turn my neck left or right with out getting very bad pains. Even when the pain is minimal i still cant look over either shoulder and place my chin into my chest as it just causes too much pain and agony. I can look up with out any problems or pain which i find strange but i can feel a line down the back of my head into my neck and then down the left side of the body that i can only assume is the nerve that is causing all the problems. The other morning i woke up in the early hours with yet another visit from the beast. The attack started around 3 am and i can only assume it was the cold and drop in temperature that set it off. The strange thing about this attack is the entire left side of the back of my head went ice cold. A really strange sensation that i have only had a couple of times and is very scary when it happens.

Although i am still having major health issues and my hiatus hernia is causing so many problems i can hardly eat or drink properly i am still having the lowest amount of attacks i have ever had. he total amount of attacks i get on a daily basis has halved and i now find myself with more attacks free days the ever before but they still aren't  pain free days as i have to contend with the back and the neck playing up and also the hernia causing problems. My luck regarding my health has been really bad the last 10+ years and i am hoping and praying to god for it to change soon. I have managed to get out fishing a couple of times over the last few months but have had to deal with attacks whilst on the bank. I am hoping to get a=out a bit more in the future as i feel i need to start getting out of the flat and in the fresh air a bit more before it starts to drive me completely insane. The doctors have started me on a testosterone replacement program as my levels suddenly dropped to a very low level at the start of the year and i have also reduced the amount of simvastatin i take for cholesterol which is a good sign as it means i am starting to get it under control.

I have only been on the testosterone replacement for a couple of days and already i am feeling a bit more positive in myself and am grateful that the medication and treatment has all started and slowly but surely i am learning to live with this condition. If someone was to tell me 10 years ago that i would be living with a rare condition that there is no cure for and very little treatment and that i would have to be in severe pain every day for the rest of my life i don't think i would have been able to continue and wouldn't have believed them. Now that i am under treatment and am learning how to deal with the constant attacks and pain its starting to become second nature. I really don't think i will ever get used to the level of pain the cluster attacks cause and i will always be scared of being out in the cold in case it sets off attacks but at least i am starting to learn how to live as normal a life as i can considering the amout of health issues i have. I just really hope it gets better and not worst again!

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.

Once again the Beast returns !

When ever i feel like i am making some progress and finally getting my condition under control something always happens and makes me feel worst than when i started. My luck regarding my health has been so bad over the last few years i am shocked that i am still alive and breathing. I have had several scares due to severe chest pains that the hospital thought i was having major heart problems, i have had allergic reactions not only to the medication the doctors are giving me but to thing that i have never had reactions to before all because of the hiatus hernia. My mobility has gone down hill fast with bad pains across the bottom of my back from a lump i have on the left side of the spine and then there is the sharp shooting pains up the left side of my back and in my neck all on the left side. This is probably due to a damaged nerve i have in the neck and it seems to be getting worst as time passes. All this on top of my actual CH and the attacks i get on a daily basis.

As appointments were dropping through the door and action was being taken i thought i was finally getting somewhere and started to feel a lot better not only physically but also mentally as i felt i was actually gaining some control over my condition. Then when things had started looking up the inevitable happened and once again something came along and started to make me ill again. This time i have been waking up early in the morning with my usual attacks but now i have found that i am waking up with a completely dead left arm and sometimes also my left leg. At first i thought it was just from sleep as after a few moments it starts to come back to life with the usual pins and needles. It didn't start worrying me until it began to start happening during the day when i was just sat watching TV. All of a sudden i would go to move and realise my left arm wasn't reacting to my thoughts or movements and i couldn't feel a thing. When i did move all it would do was flop around.

This has been going on for a while now and it keeps happening. I now have pain in the upper arms muscle as i think i have pulled or damaged the muscle from where it was flapping about and in panic i must have moved it a bit too much and hurt it. The feeling always comes back after a couple of minuets and i always get that pins and needles feeling as though the blood circulation has been cut off and then suddenly releases and the blood rushes back into the arm. I am sure i am trapping whether a nerve or the vein but i have this horrible feeling it is again linked to the damaged nerve in the neck that has been causing me sop much pain for such a long time. I have now been waiting well over a year and half to be seen about it and am no where closer to getting it sorted since it first started all that time ago. I just hope they will sort out an appointment soon as it really is starting to get to me. With all these things happening my stress levels are very high and i can tell this by the skin peeling on my arms and in my hair as i seem to get a stress rash when ever it is playing up or i am worrying too much.

Stress is also one of the main triggers for my CH along with cold weather so i have been having to deal with a lot more attacks just lately and this just drains all my energy leaving me feeling lethargic and sore all day long. The hernia is also causing havoc with the body as i keep getting repeating infections and problems when i eat and drink resulting in sharp stinging pain in the chest area. This along with the dead arm and back pain all the time is really taking its toll on me and i wonder sometimes how much more of this can i take. I try and stay strong and keep saying to myself i can fight this all the way and i will try and lead a normal life. I managed to get out fishing the other weekend and i felt so much better afterwards so we are trying again this coming weekend so i can get some fresh air doing something i love. I am hoping the beast will leave me alone for the weekend and i manage to catch some nice specimen fish. I( have appointments coming up in just over a weeks time with my neurologist and also for a CT scan and hopefully i will be able to get them to put the wheels in motion so to speak and get me some help as things just seem to be getting worst.