Understanding what a Cluster Headache is.....

I have lost count of the amount of times i have been asked what on earth is cluster headaches? are they like migraines? or is it just a normal headache but you get lots off them? Surely you can't be in that much pain , its only a headache..!

Sometimes i just keep quiet and chuckle inside knowing that these people haven't got a clue and if the think a migraine is bad then they have never experienced real pain. There are other times where i would love to smack then across the head and tell them to get a grip and read up on it before you make judgements and comments about people who suffer the condition. How someone can comment when they have never seen let alone experienced an actual attack is just beyond comprehension. 

The truth of the matter is it is actually a nerve inside the brain that is either infected or damaged and when the nerve decides to play up, swell or start causing problems is when an attack arises and the person effected by this will then experience pain like no one can ever describe. Specialists who have actually suffered from the condition say it is like having a body part amputated with out anaesthetic and not actually passing out, having to ride the pain for the entire time. The pain level of these attacks are so strong that many beg for death within 5 minuets of experiencing the attack.

 If a sufferer doesn't have any kind of medication to help the effects of the attack then god help them as an attack can last well over an hour.  There is no cure for this condition and very little treatment so you cant actually stop the attack happening all you can do is shorten the length of the attack and help you to get through it by using some very strong medication that in itself causes many health problems. I personally don't know how i have managed myself over the years and wonder how i am still alive today and how i get through each day knowing an attack is just around the corner, but its the strength of knowing there are others just like me and people out there that are worst off than i am that keeps me going each day.

I pray to god no one i know ever has to deal with this condition and thank god that it can be passed on or caught. Why this happens to us we will never know and only through time as more and more people become aware of the condition and more research is done they may one day be able to understand it and treat it. I can't ever see that happening in my life time but with medication and medical research advancing over the years you never know, anything is possible. Until then it will remain probably THE most painful condition known to a human being and i wouldn't let an animal suffer as much as we have to suffer.

There are 2 types of CH sufferers

(1)  Episodic ( Where attacks come in bouts and can last a few weeks maybe a month and then you get long periods of being pain free in between bouts. This also means you can live a normal life during the pain free periods but when the attacks come your world changes) This is probably the most common type.

(2) Chronic ( This is when you have attacks on a daily basis and very few pain free periods. Sometimes attacks can be as many as 8 or 10 per day for extreme sufferers. Attacks Last over an hour at most times but can be shortened with medication. A chronic sufferer can become episodic with the help of strong medication.) This type is the worst and has a very low survival rate as most chronic sufferers have ended up committing suicide or dying from an attack related illness such as heart failure or Stroke

This is Why "CH" is nick named "Suicide Attacks" 

due to the chronic sufferers low survival rates . 

"I myself am a "Chronic" sufferer and i refuse to be beaten by the beast and i will fight this condition to the end with all my strength and will keep fighting until the day comes when i take my last breath" ( Martyn Russ )

The Beast Attacking Picture by a Cluster suferer

This is a diagram of what it feels like when the beats attacks

and the cluster headaches begin! 

I just can't believe my luck and what i have had to go through over the last couple of weeks

Just when you think things are beginning to improve something happens and makes you feel as though you are back where you started from. With the warmer weather fast approaching and the amount of attacks i get at an all time low i really thought it was time for big improvements. I had planned on a fishing trip with the private fishing club that i had created with a few friends of mine. We had planned on a social get together down on our local lake to give me a chance to get out and do some fishing, the thing i love most, and also to see some of the other anglers and get together for a friendly chat and a bit of fun. The morning i was due to go i woke up in the early hours with seriously bad pain across the shoulders and top of my back and also up both sides of my neck. I could hardly move and ended up having to postpone the social fishing trip and call the doctors to make an emergency appointment to see a doctor. When i managed to get to the doctors they told me i had most likely twisted the small ligament in my neck that connects to the shoulder on the right side and wasn't much i could do apart from take anti-inflammatory medication and wait for it to fix itself. The pain across the shoulder was just the pain travelling and making it feel worst than it was so all i could do was have a hot soak in the bath and try and ease the pain and rub gel into my shoulder to try and ease it.

To top things off i have been having problems with the neighbours cats sneaking into my flat when i take rubbish out or hang washing on the line and they have been leaving fleas in my apartment. When the fleas bite me i have been having a reaction to the bites so i ended up having to rip up my carpets and soft furnishings and throw them and then get a flea bomb and fumigate the flat completely. This got rid of the fleas but suddenly all i could feel was crawling all over my body and every now and again a sharp sting like bite sensation that resulted in small red spots on my body. I started to think the flat had been infested from my carpet as i got it off a neighbour who had it in storage for over a year and had cats in the same room it was stored. I believed the fleas must have laid eggs in the carpet and that's what was hatching and going on so i had to throw it away. I couldn't work out why after treating myself and the flat and washing every bit of bedding and clothing i had at boiling temperature to ensure nothing was there, i was still getting the crawling sensation and bites.  I started to think all sorts and it was driving me insane. I had spent a fortune on bug sprays and pesticides and not to mention the cost of having to now replace all the carpets in my flat and soft furnishings.

I then decided to pay my chemist a visit and explained what was going on and he stood there and laughed at me saying "i know how you feel, i have cats myself", Why on earth was he finding it so funny? He then explained that fleas can also carry viruses and when they bite you they can transfer the viral infection to you and this is what was going on. I wasn't actually getting bitten and there wasn't anything on me. i had done the right thing fumigating the flat and it was successful but i was now suffering from and infection that was attacking the nerves in my body. The small red spots were from the infection and the nerve ends and the sharp biting sensation was from the virus attacking the nerve ends resulting in a red mark on the body. He examined my body all over to make sure this was the case and told me to make an appointment wit the doctor as soon as possible. I explained ib am booked to see her a week Wednesday and he asked has the rash become worst or better. It was actually calming down so he feels that i am over the worst of it but i should still attend my appointment in case antibiotics are required as it could come back.

I just can't believe my luck and what i have had to go through over the last couple of weeks. Just when i thought things were getting so much better something had to happen and put me down. If i had cats or pets myself i could understand but to have to go through all this because of a neighbours pet is just beyond me. Well one thing is for sure i wont have to do any spring cleaning at the end of the month as my flat has never been so sterile. Not only did i do things like clothes , bedding and furniture but i bleached every floor and surface and scrubbed the entire flat from top to bottom. I placed pesticide in the cracks under the skirting boards and made sure every floor had been treated with stuff from the PDSA that will continue to kill any flea, ticks, mites or bugs for the next year. I never want to experience anything like this again as it really did make me ill. I had such a bad reaction to a flea bite i actually thought i was going to die. It seems ever since i had the Hiatus Hernia i have become allergic to some strange things that i was never allergic to before. So from now on i have to become extra careful on anything i do and hopefully as soon as the neck and back ease from all the pain i will get out and go on my fishing trip as i am really looking forwards to it.  Fingers crossed it will be in the next couple of weeks.

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.