Its that time of year again...

Its that time of year again where the weather changes are dramatic and the cluster attacks become unbearable. Being woken in the early hours all the time due to the sudden temperature drop at 2 and 3 am is really getting annoying. So far this year the beast has been kind to me and i haven't been getting as many attacks as i normally get and with the help of the medication i am now on , Amertripterlyine, i have been seeing a lot more pain free days than i usual have. I have started making plans for a few fishing trips this year and am glad that i can finally jump back on the saddle so to speak and get out a lot more instead of shutting myself away in the flat afraid to go outdoors in case of a massive attack. I am about to go out for a 3 day fishing trip at one of the local lakes with a few friends and hopefully the attacks will stay away for the 3 days but i was reminded this morning just how painful of a wake up call these attacks can be.

It was really strange as i think i was having a nightmare when the beast decided to rear its ugly head. All i can remember is that i dreamt that something had happened and i was holding my head in agony because of some kind of accident but the details of the dream have now become vague. When i woke up i didn't even have time to realise it was just a s dream as the pain was at a maximum level when my eyes opened and i was rubbing my head trying to ease the agony. The pain had already shot from the top of my jaw on the left side up behind the eye and over the top of the head into the neck at the back. The sweat was pouring off me and i cold hardly open my left eye. My face felt swollen and i was getting shooting pains down my back from the pain in the neck. I can only describe this pain as a stinging pain as it was very sharp and no matter what i did i just couldn't get comfortable or stop it form hurting. 

I rushed for my injection but i knew it would have very little effect as the attack was already in full swing and when this happens no matter how quick you take the injection you still end up having to ride out the attack and the pain for the full duration. I was lucky as the attacks normally last well over an hour but this one seemed to ease off at 45 minuets and was gone just as quick as it started. I can only think that it must have started whilst i was asleep and the dream i had was a way of my brain waking me up to tell me i was in severe pain. Thankfully it didn't have any after shocks as i call them and i managed to drop back off to sleep. Normally when i am woken by an attack i end up having to stay awake as the aches and after pains last for a few hours making it impossible to relax again but i think my body was so tired after this attack it just wanted to sleep. 

I am lucky when i go fishing i have a bivvi (a tent) that i set up camp in and if i have a big attack i can just lay down on my camping bed and relax and let the attack do its thing whilst i take my medication. Then when the attack is gone i can continue my fishing so i don't mind having the attacks when i am out on the lake bank. It's a totally different story when you are out and about in general as i feel embarrassed when i have an attack in public and get annoyed when people approach you, wit the best of intentions, asking if you are ok and can they help. Its obvious i am not ok and when i tell them there is nothing they can do and to leave me deal with it in my own way they look at me as if i have suddenly turned into an alien or something. It's difficult to explain what an attack is like to someone who doesn't know about the condition and i can understand their reactions to not being able to help as i myself couldn't just leave someone who was in so much pain and i too would feel helpless if there was nothing i can do. 

This is one of the main reasons i tend to lock myself away in my flat day after day and even though the doctors tell me its not healthy for me to do this is very difficult not to do it and they say they understand but i don't think they do. It wouldn't be so bad if i had a warning sign that an attack was on its way and i could then go out and return home before an attack happens but with this condition there is no warning and it can happen at any time within seconds. The one thing that does annoy me is the problems i am having with my health now after having so many side effect from different medications trying to find one that will get the condition under control. Because there isn't much now about the condition and its incurable its trial and error with the specialists. I actually feel like they are experimenting on me rather than treating my condition but there is nothing i can do to change that feeling knowing there isn't a cure.  Lets hope now the warm weather is here i continue to have more pain free days and less attacks and fingers crossed this condition will slowly become more manageable as time goes on. For now i am just grateful for any time i have with out pain and lets hope i can get out fishing as much as i can this year whilst things are going well, but i wont count my chickens just yet!

The beast decides to return and remind me just how painful it is!

One again things had started to improve with my health and then the beast decides to return and remind me just how pain a condition CH can be. Again woken in the early hours due to the temperature dramatically dropping and setting off an attack. First you think you have woken up for some other reason, to go to the toilet or because of some noise but you suddenly realize that there isn't any noise and you don't need the toilet and confusion set in until the inevitable happens. Suddenly your eye starts to burn as if someone has pushed a hot poker straight through to the back of the socket as that is where the most pain seems to be, just behind the eye. The pain then shoots up over the top of your head and into the neck following a straight line over the top. Then you suddenly burst into an unbelievable sweat and your clothes become soaked including the sheets and covers. Then you start to feel the left side of the face begin to droop and your eye starts to become heavy and close as the pain increases to a level that you can not describe.

The pain level continues to rise and before long you are hearing loud ringing in your ears and a loud hissing sound as if someone has un-tuned the TV from the channel. You rush into the living room and scramble for your injections as you know this is the only thing that can stop the attack but if you are not quick enough you may have to put up with this level of pain for more than an hour and you suddenly become religious and start praying to god for relief and the attack to stop. You stab the injection into your upper leg muscle and wait for the magic fluid to enter the body and then all you can do is hold your head and wait. No matter how many attacks you have they always seem worst than the last and the pain always seems greater than before. Again you start praying to god for the pain to stop or for him to take mercy on you and finally pout you out of your misery. For that brief moment you actually welcome the thought of death and wish for it all to end. You start to question god, how can he leave someone in so much pain, why do you have to suffer so much on a regular basis.

Then suddenly, as fast as it all started, the pain stops and your face feels numb to the touch. The sweat begins to ease off and your eye starts to open again. The beast has gone. You change your t-shirt and rip the covers off the bed to put fresh ones as they are soaked from sweat. Your skin feels icy cold and you feel as though all your strength has gone from your body. Each attack drains the life from you and you wonder just how much the human body can take, How much more pain do you have to suffer until they find a solution. I have tried no end of drugs to get control of the beast but they seem to have done more damage than good. I finally thought i found the right one for me when they changed me over to Amertryptaline but even this doesn't stop all of the attacks from coming. I have now been suffering from chronic attacks for over 4 years and although i have seen a huge improvement and deduction in the amount of attacks i get i still can't get to grips with the condition.

I am still having problems from side effects of the medication i am on and also the hiatus hernia i now have due to the bowels packing up. I now have to rely on 3 types of laxative in order for my bowels to work semi-normal. You would think they would have sorted something by now but the waiting lists for anything to get done seem to be getting longer and longer each year. The biggest trouble is not many people know about Hortons Neuralgia, Cluster Headaches, and the ones that do know about the condition don't have much experience in dealing with it as there are still no cures and very little treatment known to work. I keep on trying to stay busy and not dwell on my illness and try and live a normal life but it seems impossible at times. I know there are more attacks to come and more pain to push through but i still pray for a miracle and hope that one day the pain will eventually stop. All i can do for now is be thankful for the pain free moments i do have and try to make the most of them when i can. I have to make the effort not to shut myself away in my flat all the time frightened to go out in case of attacks appearing. Lets hope i have the strength to continue......

The pain then suddenly stops as fast as it started....

Once again i find myself waking up at 2 am wondering why i don't feel tired and finding that i am about to have a cluster attack. No matter how hard i try to avoid these early morning wake up calls i always seem to get them. I thought it could be the weather and the sudden drop in temperature we get in the early hours so i keep the heating on trying to avoid it. I have even tried to tire myself out so much that i could actually lay in and sleep through it but no matter how tired i am, i still get woken. Its strange how it always starts the same way and is always on the left side of my face and head. Again it starts behind the eye and the top of my jaw on the left. The eye swells up and the face begins to droop. Water streams from your eye and sweat pours from your forehead. The pain always travels over the top of the head and ends in the back of your neck. The level of pain is so severe there is nothing on earth you can compare it to. It always leaves you feeling drained and praying to god for it to stop. If you were never religious its amazing how you suddenly hope that there is a god and that something can be done or that he will take mercy on you and stop the attack, but this never happens.

The pain then suddenly stops as fast as it started and you are left rubbing your sore head and eye wondering if and when it will return. You would think after suffering for so many years and having so many attacks that someone would get used to them but the pain always seems stronger each time it happens. The attacks can last from 30 mins and anything up to 3 hours and by the end of it you actually wish you were dead. When i first had these terrible attacks i thought something serious was wrong or i was about to have a stroke or even worst, i was about to die. I was never prepared for the shock when the specialists told me there was no cure and very little treatment for the condition and i would continue to have these attacks till i die or until they can control them with medication. If i had known what i know now i would never have agreed to the different drugs they kept on trying. The amount of side effects from the medication is crazy. One drug starts causing problems so you end up having to take another one to stop this problem and so begins the viscous circle you end up in.

Well i have to admit if it wasn't for one of the drugs i don't know what i would have done. The Sumatripitan injections are a god send as they are the only thing that will abort a full blown attack but you can only take 2 in 24 hrs and sometimes the attacks are so powerful they just don't seem to have any effect when you take the injection. I am just grateful for the times i am able to abort an attack and thanks to this the number of attacks have reduced. Although i still get attacks i am now finding i have more pain free days and have started to re-build my life. I will be getting out a lot more and especially getting out to do some fishing, the sport i love and use to keep my depression and stress under control. I have been making plans and getting things ready for the season but as usual, as soon as things start to go my way something comes along and kicks me square in the plums. 

I have started to get sharp pain in my chest again and can only think its from wind or the hiatus hernia caused through medication side effects. The pain was so bad this morning i woke up and thought i was having a heart attack and scared the living daylights out of myself. I have had no end of tests done at the hospital as i was getting oral thrush on my tongue and a sore throat and eyes for some reason but when they looked into it they couldn't find anything wrong.  Thankfully the tests have helped to put my mind at rest as i know i don't have any serious conditions other that the Clusters and the hernia but these are bad enough on their own. When the pain comes in the chest i can only assume its the hernia causing swelling and wind pushes up to cause the pain. If its not the hernia then it could be the same nerve in the neck that also causes me pain down the left side of my back. I think this nerve is tender as its the same nerve that the clusters travel along that goes over the head and into the neck.

It is possible that the cluster attacks are aggravating the nerve or even the other way around. I am still waiting for my referral to physiotherapy and i have now been waiting 2 years for it. Its crazy to think they would leave someone in this much pain all the time but as my specialist keeps saying to me there isn't much else they can actually do for me as painkillers doesn't help and only makes my health worst. What ever is causing it all is making my life a living hell. Just to be able to live a normal life again and go a while with out any pain or problems is a dream that is fading away fast. I sometimes have to remind myself that although i am in pain and have these conditions i still have to be thankful for the life i do have as there are thousands of people a lot worst off than i am and they are struggling to stay alive let alone live life.

Once again the beast has returned, so much for staying pain free!

Once again, just as I start to feel well, the beast decides to return and remind me just how painful my condition is. 3 am this morning i woke wondering why I didn't feel tired and within a few seconds of me realising what was about to happen it began. The pain began behind the left eye, a feeling like someone has shoved a hot poker straight into your eye socket. It shot up over the top of the left side of my head and into the neck. The swelling started over the top of the head along the scar I have from where my head was split open all those years ago. The left eye started to stream with water and slowly close and I could feel the left side of my face begin to droop as the pain level rose. You would think after having so many cluster attacks I would be used to the pain levels but no matter how regular they become you always feel like the pain keeps getting worst each time it happens.

I don't know what set it off this time as I couldn't feel the cold on the head like I do in winter. The cold is one of my main triggers and can sometimes cause me to have constant attacks through out the day but this time it is something else that has started the attacks. It could be stress from where I have been feeling ill the last couple of months or it could be down to the severe side effects I have been getting from medication. The doctors have been trying to find out what on earth is going on with me as there is no sign of infections or problems. The have checked kidneys, scanned for gall stones and even done heart traces to check its not a heart problem and still nothing appears. The specialist at the hospital said he had a feeling it could be one of the medications I was on but didn't know which one it could be. I have slowly been cutting out medication that I can live with out but when you have so many problems happening at the same time it is difficult to know what you can and can't take.

Where I have been run down for so long the thrush on the back of the tongue had reared its ugly head once again so I decided to go to the chemist and purchase the Daktarin gel that I was prescribed before by the doctors. When I tried to purchase it the chemist looked at me funnily and said are you sure about this? I asked what on earth she meant with that comment and it was at that point she told me the news. They had a note from the hospitals saying that Daktarin should be taken off general sales in the chemist and it is only to be given to people who are not on any other medication. I asked why and she explained. The Daktarin gel seems to react with other medication and the side effects can be extreme especially if you are on Simvastatin. What a coincidence I told her as that is one of the medications I have to take for high cholesterol. I think the look she gave me said it all. She continued to explain that another gentleman had been prescribed it who was also on Simvastatin and due to severe reactions he was rushed into hospital feeling very ill yet the hospital couldn't find out what was wrong (sounds familiar) but unfortunately he died from the reactions. Well you can just imagine my reaction to this news.

As soon as I returned home I grabbed every tube and box of the stuff and threw them out and now have to make another emergency appointment to see my doctor to try and get a handle on what on earth is going on. Its just crazy the amount of side effects from different medications I have had over the last few years. The neurologist experimenting with the different drugs to try and get the clusters under control almost killed me once and there was no way I would let that happen again. Having an allergic reaction to a medication is one thing but when it is just side effects due to 2 different drugs clashing you would think they would be a lot more careful. If it wasn't for the chemist remembering the problems with the medication being reported to them I wouldn't have known that it was causing a problem and would have probably continued the treatment and possibly continued to become even worst than I already am. Thankfully this medication is no longer available over the counter so no one else has to suffer the way I have been and I am starting to wonder what other medications I am on could be causing me problems.

Thankfully it is now entering spring so my attacks have reduced in number as the weather begins to warm up but I know I will still have attacks during the early hours when the temperature drops to its lowest. I can handle these attacks thanks to the injections I have been prescribed by the neurologist but I will never get used to the amount of pain that comes with the condition. Now the better weather is here it is time to start getting out and doing a bit of fishing to try and relax. The last couple of years I found it difficult to get out but I feel now I have the condition under some kind of control I should be able to get out a lot more so I have so much to make up for this year. I am just praying the beast will behave itself and I start to get a lot more pain free days.

A visit from the beast and health has gone down hill fast!

Once again as things start to improve for me the beats returns and shows its ugly head! At 3 am this morning i was woken up with a massive attack over the left side of the head. Starting again from behind the eye and shooting over the head into the neck. The pain level was so bad i thought i had past out at one point. I have had hundreds of attacks and you would think i would be used to them by now but the level of pain just seems to get worst and worst each time an attack appears. I was doing well for a while as i hadn't had an attack for a couple of days but i have been feeling very ill just lately.

All of a sudden i cam down with a viral infection just over a month ago and because i was violently sick during that time it feels and looks like i have made my hiatus hernia even worst as now i cant eat or drink with out it trapping, causing pain and i have to massage the chest just to get food and drink inside me. How long i can go on like this i don't know. The doctor has referred me for another endoscopy to see if i have made it worst and i suppose at this time they will decide what to do. I have managed to get over the viral infection with the help of antibiotics but seem to have gotten worst over the last month yet again.

I keep breaking out into cold sweats for no reason and my eyes keep burning. I am getting pain in both side of my neck up the back of the head and every now and again a small headache appears on the right side of my head, only for a few seconds, and then disappears. My stomach has swollen up to twice its normal size and my bowels don't seem to want to work properly. I am getting sharp stabbing pains under my left shoulder every now and again and i keep feeling very sick. As well as all the pain and the cluster attacks i am feeling very weak and even doing small jobs around the flat seems to be more than i can manage. I suddenly feel weak and faint and have to stop every 10 minuets as i feel as though i am going to pass out. What on earth is going on.

I am booked to see the doctor again this evening and then i have an appointment at the hospital tomorrow for an assessment about my head, once again. The neurologist feels i am also getting bad migraines as well as the cluster attacks as i get different types of attacks depending on where they start. Sometimes its from behind the eye and the top of the jaw which are the cluster attacks on the left side and then i get the ones that start at the top of the head and make the whole of the head throb and hurt and suddenly become very heavy. These are the migraines i think. Why cant i suffer with just one problem. Its bad enough they cant cure the cluster condition but to have other things wrong at the same time and not know what on earth is causing it is really starting to get to me.

I am sure that food is trapping in my upper chest and i think i am having reactions to this. I know its trapping as i was prescribed Appercap for the wind i have and when i take it, sometimes it releases in the upper chest and suddenly the whole of my chest feels freezing cold and icy from the mint and i get a very minty breath all of a sudden. It is so strong it actually takes my breath away and i have to rub my chest and drink coffee just to make it pass through. Why its doing this i can only assume its the hernia that is stopping the food passing through and i sdont know what else i can do to stop it. I am praying the doctor and hospital do something soon to help me as i really dont know how much more i can take. The last couple of weeks i have become so ill i am really worried and i have never felt so weak. I know i have been through a lot when it comes to my health and ever since i started the medication to try and get the clusters under control my health has been going down hill fast. I think its mainly to do with the side effects of the medication and the allergic reactions i had but surely they can do something about it. Fingers crossed they do it soon.

Time to concentrate on something other than the condition....

I wonder some times just how much pain and trouble the human body can endure. i have experienced pain levels like nothing you can imagine and still the body tried to fight even though there is nothing you can do about it. When i was first diagnosed with Cluster Headaches i thought to myself they must be wrong or they have miss diagnosed me. I though there was no way this could be a headache and like most people i thought headaches were brought on from stress and could easily be dealt with by taking a couple of painkillers. How wrong could i have been. It wasn't until i started to research the condition i realized the term "Head Aches" was just a generic way of describing the condition and the actual name for it was "Hortons Neuralgia" , named after the guy that discovered its condition. When i was told there is no cure, very little is known about the condition and that i would have to experiment with different medications to gain control of the condition, i was horrified. To think there was no treatment for the pain i was experiencing and no cure so i couldn't be made better was a real kick in the family jewels. 

When i first met my neurologist and he said he knew what condition i had and was able to help me to a certain extent by using injections and medication. The injections were the only thing that will actually abort the attack when it comes on and oxygen helps to reduce the length of time an attack lasts. If caught quickly enough you can actually abort an attack using high flow oxygen but you have to use it at the first sign of an on coming attack but it very hard to tell when that point is. I was told that i could suffer from side effect of the medication and that trial and error was the only way to find out what medication would work for me. The only trouble was that i didn't expect the side effect to be causing me as many problems as i now have. The pregabilin caused my bowels to stop working properly and ever since i was on them i have had trouble with severe constipation and stomach aches not to mention the wind build up all the time.  Then there was the Verapimil and Lithium that gave me severe allergic reactions and i thought i was about to die.

The next medication was the Sodium Valporate, and boy did i become really ill with that one. I have never experienced so many problems from taking medication that is supposed to make you feel better but in fact was making me a lot worst as time went on. I ended up with a hiatus hernia from being sick and now it has become so bad i can only just swallow but have trouble with food and drink trapping in my upper chest and staying there for days at a time causing me to have a reaction to it. The pains i get in the chest from the hernia is very scary and can sometimes make you think you are having a heart attack. It doesn't help that the trapped wind in the body is also pushing up on the internal organs causing pain and also making the hernia worst as it pushes the stomach up into the chest even more than usual.

I am booked to have blood tests in a week and another doctors appointment and the following day i have an appointment at the hospital with the general medicine unit. I dot know why they have called me in but i hope they will now take note of the problems with the hernia and will finally do something about it to make my life a little easier and more comfortable. I have been slowly improving over the last couple of weeks and i am not as ill as i was feeling. Even though i feel better and can't wait for the weather to start settling so i can get out and do some fishing i still have to deal with the odd attack and chest pains on a daily basis. When i first started typing this blog years ago and was doing a daily update i never though i would be here 4 or 5 years later still giving weekly and monthly updates on my health i was hoping that within the first couple of years they would have got this condition under control but it doesn't look like that is going to happen any day soon. The only thing i can do is to try and concentrate on something else like my fishing and put my health to the back of my mind and not worry about it all the time.  

Talk about bad luck with your health......

Sometimes i wonder if i am jinxed when it comes to my health just lately. Every time i start to feel well and my strength returns something else flares up and rears its ugly head and cause me more pain and trouble. Again i have just got over a nasty viral infection and after being stuck on antibiotics and painkillers my bowels have decided once again to stop working. Not only is this most uncomfortable and annoying it causes trapped wind resulting in stabbing pains in the side and back all the time. Just to top things off, when i was being sick from the viral infection, i think i may have made the hiatus hernia i have even worst than it was as i am now struggling to swallow things. Not just food and liquids are trapping, i am also getting problems just swallowing in general. The air seems to trap just as bad as food and drink and i have to massage my chest and put up with bad chest pains until it pops back open and passes through.

During the night i am woken at least 3 or 4 times from the problem of not being able to swallow. I wake up with dribbling coming from my mouth and start to panic as i am unable to swallow the fluid down and have to sit up and massage my chest for 10 minuets before it will eventually pass and ease off. Then i am able to lay back down and go to sleep. Not only does this problem seem to have gotten worst but i am getting some strange symptoms from it. My eyes keep becoming sore and every now and again i break out into cold sweats. I am starting to wonder if food and drink has been trapping in my chest for a while and has become a problem and my body is reacting to it. I am using antihistamines to get rid of the sore eyes and paracetamol to stop the sweats but it doesn't seem to work and i find i have to change my top at least 6 times a day.

If someone was to sit me down and tell me all the trouble i would have to go through when i started on the different medications i would have opted not to take them and to suffer the pain constantly from the CH attacks. That is a huge statement to make as the pain level from a cluster attack is like nothing on earth. Even amputation with out anaesthetic doesn't even come close to the level of pain you get with a CH attack. I have had so many problems from medication and treatment that my body is really messed up and once the body is out of balance it is very difficult to get it sorted. I have been back to the doctors to see what can be done and they have told me i have to back for another endoscopy to see if it has come through more and if it is the cause of all these problems. If it is i think they will have to operate and push the stomach back through and close the hole. This will mean i will have a constant weakness where the hernia was and have to be careful from now on.

The doctor has referred me for the treatment and booked me for more blood tests so the next fortnight is going to be fun as i have a few different appointments at the hospital, maybe finally we will get something sorted and once they see what is going on they will be able to offer me the correct treatment to get it sorted out once and for all. I am still convinced it is the hernia that has caused me to have so many problems with the medication and until it is sorted out i will continue to have these issues. Lets hope my luck, as far as my health is concerned, will change for the better sooner rather than later.