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!