It Don't Rain, It Pours..... Time for an Operation!

Well every time i think my health is improving something happens and i am back to square one. Just as the attacks started to ease off and become manageable again the hiatus hernia has decided to become so problematic that not only am i getting pain daily and problems with eating and drinking but it is also causing infections that keep returning once treatment has finished. Talk about having bad luck when it comes to my health. Each time i eat something or drink it seems to trap at the top of my chest and doesn't pass through properly. This then causes me stinging pain and i have to massage my chest and push inwards with my hands until i feel the hernia move and pop and the food or fluid finally passes through bubbling as it goes, which feels really strange. This is the only way i can eat or drink.

Again my eyes have started to become sore all the time and i am getting strange rashes appear over the body and the skin sometimes becomes red and sore down my arms. This is accompanied my a feeling of weakness and tiredness all the time and a bad case of oral thrush that i have been constantly treating now for well over 6 months. I visited the doctors once again and they have now done an emergency referral to get the hernia operated on and sorted out once and for all as its affecting me so badly. Again it has caused an infection in the chest area but i cant have antibiotics as i have only just finished 2 different types and by giving me more will cause an immunity to them so my body has the fight it naturally until i have the operation. The thrush is so bad it has effected my taste and everything tastes disgusting and my mouth constantly feels sore.

Suddenly i am having problems walking and can no longer walk to my local shop with out my legs turning to jelly and becoming so painful i can't stand. The doctor rushed me into the hospital in case it was a clot that had appeared in the lower legs but everything was clear so it looks like its the nerve that is causing me pain in the back. It seems like its effecting my walking a lot worst than usual. I have been getting a few bad cluster attacks over the last week as we have been having some strange very hot weather. Although the temperature is up and some days it is very sunny it still seems very close and there is an electrical feeling in the air as though a storm is on its way and its this that seems to effect my head and nerve and bring on attacks when i least expect them.

I am hoping the hospital wont take too long to arrange the appointment for the pre op and then the actual operation itself. Don't get me wrong no one wants an operation and least of all me but i know its going to improve things at the moment. I am so grateful technology and medical treatment has improved in leaps and bounds over the years as the doctor informed me 10 years ago they would have had to split my chest open to operate and the hiatus hernia resulting in recovery and hospitalization that could last for months or years. now days they do it through keyhole surgery and i could be in in the morning and back home the same evening. The one thing i am not looking forwards to is having the camera down the throat again so they can see the position of the hernia and just how bad it has become. the last time i had it was bad enough and couldn't stop gagging so i am praying it will be done quickly and things will be solved sooner rather than later.

The early morning wake up attacks are doing my head in!

Even though i have been getting less attacks than i usually get so far this year i am still struggling to cope with the early morning wake up calls from the beast. Every morning for the last 2 months i have been woken up at 2 am or 3 am with some massive attacks starting as soon as i open my eyes. I think having to sleep at an angle because of the hiatus hernia is aggravating the cluster attacks and making the morning one more regular due to lack of sleep and discomfort. I have tried laying flat for a couple of days to see if it helped but nothing changed and all that happened was i was wheezing as i breath due to the hernia blocking my airway and this kept waking me up every hour through the night. Thankfully i am due to see the doctor on Tuesday as i really need them to chase up the treatment for the hernia as now food and drink is trapping all the time and every day i am in agony with soreness and stinging pain in the chest. Every time i eat and drink and swallow it just traps there and i have to push on my chest hard for it top pass through and sometimes i have to massage it for a while as it can be stubborn and not let anything pass.

 It has started to get worst over a period of time and if its ;left i think i will have problems eating and drinking permanently and it will eventually end up with me being unable to eat or drink anything and then i could be in real trouble. I had to cancel my last appointment with the Physiotherapist as i was in agony after doing the exercises that she gave me to help my neck and back as it just seemed to make my attacks worst. I started to get severe attacks during the day and they kept on returning so i ended up cutting the amount of exercises by half to see if it would help but still i was getting problems. I am due to see them again on Wednesday so they are gong to have to see if there is something else they can recommend as these exercises seem to cause me too much pain. Its bad enough i have to deal with pain every day anyway so i really don't need it being made any worst than it already is. Lets hope there is something else i can do to help me manage all the pain. 

The rest of my treatment is on hold at the moment as there is nothing more they can do until this stupid hernia gets sorted out. A Hiatus Hernia is probably the worst kind and since i have had it all sorts of strange things have been going on. i have become allergic to things i have never been allergic to before. I have been getting severe chest pains and been rushed into hospital more than 5 times with them thinking i am having a heart attack and it turned out to be the hernia playing up and causing me pain. I have been getting strange rashes and sore eyes for no reason as though i have suddenly developed hay fever and my skin suddenly becomes bright red and sore for a short period for no reason at all. All this started when the hernia started and since then i have been living a nightmare. I am praying they will do something about it the next time they shove the camera down my throat to see if it has become worst or to see what else is going on.

 The constant infections and oral thrush and fungal infections in the chest is really getting to me so i pray to god it will all soon get sorted. The trouble is over the last few years the hospitals have become so busy and understaffed its crazy waiting months and even years for any appointments or treatment so god only knows how long i will end up having to suffer. It took long enough to get my appointment with physiotherapy, it was just over a year and 3 months before i received the letter inviting me to call and book my assessment appointment and it was classed as urgent as i was referred whilst i was in hospital being treated for constant cluster attacks and severe neck pain. The last time i saw my neurologist they then sent me a letter instructing the doctor to expedite my appointment for the hernia so i will take that with me when i go to see the doctor on Tuesday and hopefully they can then get something arranged. Until then i just have to wait and suffer in silence. 

Waiting over a year for an appointment with the physiotherapist

After waiting over a year for an appointment with the physiotherapist i finally managed to get seen only to find out there isn't really much they are able to do for me. The damaged nerve in the neck and the back is just way to damaged to do anything with. I can't have an operation to repair it and i cant get treatment to make it better so i just have to put up with the pain and trouble i am getting on a regular basis. They can help me manage it a bit better than i have been by using very small and easy exercises that will help ease the tension in the muscles around the damaged nerve. They have given me 4 small exercises that should do the trick and i have to do them every day.

I started the program with no trouble gradually building up over the first couple of days but than after a week of doing it i ran into trouble. All of a sudden my attacks started to become regular again and i had to put up with 4 huge attacks one after another. This is because i aggravated the nerve in the neck and the muscles either side causing it to set off my cluster attacks. I really tried to get to grips with the program but it just seems to cause me more pain and trouble than its worth. I am scheduled to see them again in a weeks time so i am hoping there is some other way we can help my condition and help me to manage all the pain and problems, that are slowly getting worst, with my neck and my back.

Every day i experience sharp shooting pains up the left side of my back just left of the spine. This pain shoots into the base of my neck on the left side effecting my shoulder. I have also been waking up with a complete dean left arm. Its not from cutting off the circulation in your sleep like i have actually done a few times and within seconds get the feeling of blood rush back into the arm and tingling from the hands up the arm. This is different, it actually stays dead for several minuets and when it does come back to life i don't get any tingling sensation i just have a dead arm feeling in the upper muscle of the left arm as though someone has punched me in the arm really hard. Why my arm keeps going dead is anyone's guess but i am assuming it has something to do with the nerves on the left side of my body and the problems i have been having with my neck and my back.

My neck is as painful as it has ever been and keeps flaring up and causing me a lot of discomfort. When its at its worst i can hard;ly turn my neck left or right with out getting very bad pains. Even when the pain is minimal i still cant look over either shoulder and place my chin into my chest as it just causes too much pain and agony. I can look up with out any problems or pain which i find strange but i can feel a line down the back of my head into my neck and then down the left side of the body that i can only assume is the nerve that is causing all the problems. The other morning i woke up in the early hours with yet another visit from the beast. The attack started around 3 am and i can only assume it was the cold and drop in temperature that set it off. The strange thing about this attack is the entire left side of the back of my head went ice cold. A really strange sensation that i have only had a couple of times and is very scary when it happens.

Although i am still having major health issues and my hiatus hernia is causing so many problems i can hardly eat or drink properly i am still having the lowest amount of attacks i have ever had. he total amount of attacks i get on a daily basis has halved and i now find myself with more attacks free days the ever before but they still aren't  pain free days as i have to contend with the back and the neck playing up and also the hernia causing problems. My luck regarding my health has been really bad the last 10+ years and i am hoping and praying to god for it to change soon. I have managed to get out fishing a couple of times over the last few months but have had to deal with attacks whilst on the bank. I am hoping to get a=out a bit more in the future as i feel i need to start getting out of the flat and in the fresh air a bit more before it starts to drive me completely insane. The doctors have started me on a testosterone replacement program as my levels suddenly dropped to a very low level at the start of the year and i have also reduced the amount of simvastatin i take for cholesterol which is a good sign as it means i am starting to get it under control.

I have only been on the testosterone replacement for a couple of days and already i am feeling a bit more positive in myself and am grateful that the medication and treatment has all started and slowly but surely i am learning to live with this condition. If someone was to tell me 10 years ago that i would be living with a rare condition that there is no cure for and very little treatment and that i would have to be in severe pain every day for the rest of my life i don't think i would have been able to continue and wouldn't have believed them. Now that i am under treatment and am learning how to deal with the constant attacks and pain its starting to become second nature. I really don't think i will ever get used to the level of pain the cluster attacks cause and i will always be scared of being out in the cold in case it sets off attacks but at least i am starting to learn how to live as normal a life as i can considering the amout of health issues i have. I just really hope it gets better and not worst again!