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.

Another One Bites The Dust!

Once again the medication i was changed to ,Amertripline, has started to work and reduce the headaches and after 4 weeks started to give me side effects and an allergic reaction. The side effects this time was constant cold sweats resulting in me catching a very nasty chest infection and suffering for over a week not knowing where it came from or why i was so ill. I made an emergency appointment with my doctor only to be told it could be the medication that my body doesn't like and advised me to try and stop the medication to see if there was any improvement. 

I stopped the medication and the next day saw an immediate difference. I was no longer getting the cold sweats and started to feel well. The only trouble is the medication has already done the damage and caused another fungal infection in my throat and thrush on the back of my tongue. Not to mention the chest infection and the amount of crap coming off my chest even though i haven't got a cough. It first felt as though i was coming down with a nasty case of the flu but i realised and remembered that i had my flu jab earlier in the year so i shouldn't be getting the flu. I personally think it started off as a nasty cold caught from getting the cold sweats all day for weeks on end. It has now mutated into a chest infection and the doctors have put me on antibiotics to try and get it shifted.

My luck with medication seems to be terrible. it seems that ever since i was diagnosed with the hiatus hernia on top of my CH condition i seem to be intolerant to medications that never used to bother me. I think the hernia has made the body go all crazy and i am getting some strange things happen. I am constantly getting fungal infections, i have major wind problems all he time causing chest pains and making it feel as though you are about to have a heart attack and also get allergic reactions to the thrush including swelling of the tongue, sore eyes, nettle rash and sore mouth. The only thing that does help is the Piriton antihistamines as it eases the nettle rash and soothes the sore eyes for a while. Until i can get rid of the thrush completely with medication i will continue to get the reactions.

When i first started this journey and was told there was no cure i never thought for one minuet that i would go through so much trouble and end up battling my health on a daily basis. I was told with the help of medication i would be able to learn to control the beast and the amount of attacks i have would soon go into remission as soon as they found the correct combination of drugs to help me. So far i have tried 5 or 6 different medications for the CH and have struck out each time causing more and more problems to my health.  It's bad enough suffering bipolar and not knowing how your meed will be on a day to day basis let alone having to deal with all these different health issues. I wonder sometimes just how much more of this can i take. The battle is still not over and the fight continues, i am just praying that the attacks remain the same at the moment as the last thing i need right now is for the CH to flare up and be back where i started 4 years ago. All i can do is to try and stay strong and keep thinking i "WILL" beat this thing ........... eventually!

Medication Side Effects Causes more problems than the Illness.

Well once again i have had to change medication after stopping my last lot due to an allergic reaction and really bad side effects. The doctor seems to feel my body is super sensitive to any type of medication and the neurologist thinks that Amertriplin will be the one that works. Well he wasn't far wrong. After starting the medication i noticed in the first week a massive reduction in the attacks i have and also the sharp pain down the left side of the back from the neck to the base of my spine seems to have eased away and only plays up once or twice a week as opposed to 3 or 4 times a day. I also noticed that the pain in the left side of my neck has eased so what ever the tablets are doing it seems to work. 

The second week was a bit harder as i started to have very bad nightmares but i am used to them from medication as i used to get it from my Mirtazapine that helps to keep my Bipolar on the level i need to be. It took a while for those dreams to ease off so i think this will be the same with the Amertriplin. The third week was a totally different story! Suddenly one day i started to get the beginnings of withdrawal symptoms as though the methadone i am on is no longer working properly. I have asked several times to be taken off the methadone but because i have been having so many health issues the doctors are reluctant to reduce me and i have to stay with the same dose for a while until they feel happy with me. OK it was my own fault for self medicating and becoming addicted but years ago i had no other choice as no one could diagnose what was wrong with me.

Now i am in the 4 th week and the withdrawal symptoms are getting worst. I have seen the doctor and she told me it could be the Amertriplin running out and the body is now looking for the drug and i end up in cold sweats all the time and a very high level of anxiety. She decided to give me a 10 ml tablet to take in the mornings to ease the symptoms until i take my 25 ml dose at night. Even though i only started the morning dose this week i am still getting horrible withdrawal symptoms. Thankfully the stomach cramps and sickness doesn't start and its only the sweat and anxiety that gets to me. The biggest problem i have due to being Bipolar is that anxiety brings on panic attacks and it actually causes physical symptoms rather than mental. I end up with severe chest pains, breathing problems and shake horribly. 

I am praying the body starts to level out after the fourth week and i start to get used to things as i don't know how much more i can take of these symptoms. I have found myself seeking things to calm me down like Valium or cannabis and this is the last thing i want. To start self medicating all over again after over 16 years of hell is the one thing i don't want to do. Now i know the condition i have is incurable it has taken me a long time to learn how to handle the level of pain all the time that the attacks bring and to end up back at the start isn't something i thought would ever happen. I am praying to god the doctors are right and these tablets will settle eventually otherwise its another medication that has failed to help me and yet again made me even more ill. Why do i agree to take theses medications i don't know, but with out something i wouldn't survive or last very long. It Just seems to me that ever since we started trying to get the attacks under control the medications i have been on have all ended up making things worst and effecting my health in a negative way. I really hope things will change and this year will be a better one as i am having less attacks but am paying the price with my health.