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.

Good start to the New Year 2016

Thankfully we have found a combination of mediation that doesn't actually cause me side effects or other problems resulting in me having to take even more medication just to feel comfortable. The neurologist decided to try me on Amertripterlin as not only does it help ease nerve pain but also acts as an antidepressant and with me suffering from Type 2 Bi-polar it may help me and so far i have to say i am very happy with the results. Slowly but surely i have seen a decrease in the amount of sharp pain i get going up and down the back to the side of my spine. I have also noticed that the neck problems are not setting off as many attacks as they used to but now the cold weather is here there has been a slight increase.

I have come to terms with the cold being one of my main triggers for the CH attacks and try and avoid situations where i am out in the cold for too long. The trouble with this is that i am sat indoors all day and its starting to drive me slowly insane.  Not being able to get out or go fishing has really taken its toll on me and now for some unknown reason i have been suffering mild panic attacks on a regular basis with every now and again i get this huge panic attack that actually feels as though i am about to have a heart attack or stroke and die. The pain shoots across my chest, the sweat suddenly pours off me and the sound i hear become like echoes. My vision seems to slow down and the outer vision becomes blurred like you are looking down a tunnel. This is the worst one and the most scary and the sharpness of the pain in the chest also increases my heart rate and where a normal panic attack will end and your heart rate will return to normal this seems to last all day until i have slept it off.

Ever since i was diagnosed with CH Cluster Headaches and was then told there is no cure and that using medication you can learn to live with it. I though it would have been like bi-polar where you have your down periods that can sometimes last weeks or months and then you are back to normal in between mood swings. CH doesn't seem to stop at all either you have them or you don't. In my case its every day with out fail. I have the main one  early hours of the morning which is normally my wake up call at around 3 am where i use one of my injections to deal with and if i have a good day then i will get no other attacks. Then there are the days where its attacks after attack and i can have up to 8 during a 24 hour period and that really does take it out of you. Thankfully it hasn't been that bad for a year now but its still a daily issue i have to deal with and wonder if i will ever be completely pain free ever again.

All i know is i really need to do something about being stuck indoors all the time and have to make the effort to break the cycle and get out and do some fishing again. I know as soon as i am out on the bank side setting up my fishing gear all my troubles and illnesses seems to melt away and my mind then focuses on one thing and that's catching the fish, Everything else gets pushed to the back of the mind and this is one way i manage my depression. If i feel down just get out and do some fishing. The trouble is i have missed out on a lot over the last year due to the back pain all the time but now the tablets seem to be taking care of the pain i have a feeling that 2016 will be a good year for me and my fishing, fingers crossed.

Happy New Year ...2016 begins , lets hope this year is a pain free year!

Well the last year has surely been a challenging one with regards to my health and the Cluster Headaches. I have had so many problems arise from side effects of medication and allergic reactions not to mentions the problems i have been having with the bowels and the back all the time. I managed to see my Neurologist just before Christmas and he has put me on Amirtriptyline  tablets to help ease the nerve pains and hopefully help ease the attacks and start reducing them even further. So far this year the last 3 months have been amazing as the attacks have been very few but i still get the early morning ones where the temperature seems to drop at 3am every morning and no matter how hot i keep my flat with the heating on i still can tell when the drop happens and it wakes me every time.

Most of last year i found myself locked away in the flat only going out to do shopping or if an emergency and i had to see the doctor. The rest of the time i have been shut away not wanting to go out in the cold air just in case it starts off attacks again and i end up having to deal with them every day once again. It was hard when i was getting 8 attacks per day and having to ride at least six of them for an hour at a time. I really did think my world was over and my life had ended. If it wasn't for some close friends and my fishing i really don't think i would have been able to manage and possible wouldn't be here today.  The support i have had from my friends and family has been amazing and i cant thank them enough but i know its time that i dealt with all these problems myself and see if i can get my life back in order.

I am determined to go out and do as much fishing as is possible this year and hopefully a few of my friends will join me on this journey. I am fed up giving in to the pain and worry all the time so no matter how bad i feel i have to start getting out and making sure i get in as much fishing as i can as it is the only activity that actually relaxes me and helps me to forget all my worries and problems. I have been blessed to have won the Korum competition a few years back which gave me all the fishing gear i needed to start out and then over the last 2 years i have been slowly collecting more and more tackle and am now proud of the gear that i have. I can honestly say i can go out fishing and not want for anything as i have all the gear i need to try any type of fishing i want but my favourite type of fishing is specimen hunting and carp fishing (including cat fishing). I prefer to target the larger of each species as it is more of a challenge and takes skill to get them to take your bait. 

The last few moths i have been suffering bad anxiety attacks that are giving me physical symptoms and making me feel as though i am about to collapse or have a heart attack. I spoke with the doctor and refused to take Valium as i would only end up totally addicted to them and would end up with more problems so i am now being sent on stress management coarse's to see if that will help me learn to control the anxiety. It only started as i was having pains and didn't know what was happening to me and i didn't think it would become a problems but when you start having chest pains and find it hard to breath or walk, Lets hope i can get this under control quickly as its not long before we start fishing again. By the end of January or mid to end February i want to be back out on the bank fishing and chasing those carp. Lets hope my new years resolution comes true......

Happy New Year Readers....... Hope all your dreams and wishes come true in the new year.