My Journey with Hypersensitive Esophagus

After things had not got any better I went back to my specialist and he recommended another gastroscopy and a throat stretching..

Throat stretching !!!  Hmm.. Apparently because my throat had a lot of pressure the specialist thought it would be a good idea. This time I thought I would have the sedation.

I had to fast and not drink again before I went in.. I arrived rather nervous but had my wife with me..

I went into the room and they explained that they would be sedating me with something in my wrist and the procedure. They would pass the tube down my throat for another look.. Take another biopsy then they would inflate a balloon in my throat that would stretch my throat and release the pressure.

I do not remember too much about the procedure. I felt the prick on my wrist where they put the seditive in and I was talking to the specialist and I remember the mouth guard. I also remember having a stretching sensation in my throat but not much else.

I was taken on a special chair on wheels afterward and helped into a nice lazy boy to recover..

It was definitely the easiest procedure I had but I did not really detect much difference to my throat afterwards. The Biopsy did not show anything either so it was all a bit of a waste of time actually.

I was scheduled for what is called a Oesophageal Manometry and 24hr Ph test. I have attached the information sheet below..

OMPH – off treatment 2018[1173]

I certainly had no idea what I was in for.. It was just a matter of getting through it… I sat down with my wife in the waiting room at the Gastroentorology waiting room and waited nervously.

It was not long until I was called into the room.. They offered for my wife to go in but she wanted to wait in the waiting room.

I sat down on a bed that had its back upright and they explained the procedure. They had a flexible probe that had stripes down it and it was going to be inserted through my nose and down into my throat. I was then going to swallow some sweet and then some sour liquids to detect how my Oesophagus reacted to the swallowing and the pressure etc. They also explained that they could not numb my throat as it would interfere with my test.

The nurse started feeding the tube into my nose but found they could not angle the  tube down what seemed like quite a thick tube towards my oesophagus. It was painful and very uncomfortable as they tried several times to get it down the right way. It was hard that they were making it really painful but getting no where.

They called the Doctor who is the expert in the field. He said that the would probably not have more luck than the nurse but had a go.. On the second attempt he was able to get it down the correct tube and it fed down. He then asked me to keep swallowing as he fed it down my oesophagus to my stomach. I could feel it in my throat and it was really un-comfortable.

They gave me the prepared sweet liquids in turn and asked me to swallow them.. but then have about 30 seconds afterward when I did not swallow again. It was meant so that the readings were not disrupted by subsequent swallowing afterwards. This was harder than it sounds as the tube was uncomfortable in my throat and all I wanted to do was keep swallowing.

They then gave me the sour liquids and did the same procedure. They then pulled the cord out much to my relief.. but it was not the end.

Next came the 24hour ph testing probe. They showed me a little side pack that was to be my companion for the next 25 hours. They again inserted a tube through my nose and asked me to swallow again as they fed it down into my stomach. It felt horrible in my throat and I was supposed to sleep with this thing !!

I was to record when I was eating, when I was resting and when I was sleeping but pressing different buttons on the side pack – you can see me in the photo below.

lds

because I had been on a high ph diet and been told to eat normally.. I decided to go to Mc Donalds and had a big burger which I thoroughly enjoyed. It was such a weird feeling trying to eat because you could feel the wire in my throat when I swallowed.

I was required to sleep flat that night.. It was difficult to arrange the backpack where I would not jolt the wires when sleeping. I managed to get to sleep eventually and enjoyed a cooked breakfast the next morning. I managed to remember to push the buttons when required.

The next day I went into the hospital to get my wire out. We had to wait an hour before someone was free to do it.. They cut off the cord and asked me to swallow while they drew it out.. My partner was amazed that there was so much wire that was pulled out. It was such a relief to have it out.

I felt very unwell that afternoon and was in pain for the next day or two.

When I followed up with the specialist.. I was told that although my throat pressure was high it was a normal manometry and ph test. They gave me lots of coloured charts.. I was quite lost and disappointed after that as I thought I had LPR.. But I did not ??

I went to see my specialist and he told me he thought I had a Hypersensitive Esophagus.

This was both a relief and a curse.. A relief that I was not causing my throat damage.. but a curse as they do not know what causes it. The hypersensitivity caused the nerves in my throat to trigger which then caused the chest pain and the uncomfortable feeling in my throat.

I was prescribed Nortriptyline at 20mg and told I could go up to 50mg if necessary. I was sort of pleased to have something to try..

Laryngopharyngeal reflux (LPR) was the diagnosis from the ENT specialist. After some research into the symptoms I decided that this is what I had.. the only symptoms that did not seem to fit was the spit that was in my mouth after suffering head pain and the chest pain.. but because I was told the diagnosis and some of the symptoms fit.. I took it on.

I found an LPR book called Dropping Acid by Jamie Kourfman. It was basically a book that said to take on a high PH diet.

I completely changed all my food to everything with a PH over 7.. it was awful as all of the foods and drinks I seemed to like were off the list including caffeine not being good.. Apart from 3 foods that I did like.. Salmon, Camembert and bananas. My life was lean chicken or fish with no sauce and plain vegetables.

I lost about 15kg so went from about 76kgs down to 61kgs and my work mates commented on my lost weight.

Because I had convinced myself that I had this illness I tried to make sense of the symptoms. I still got sick about weekly and tried to figure out where I had slipped up and what had been my trigger food that caused it. I started driving myself nutty with keeping a food diary and trying to track down what was causing me to be sick..

What was good was some of the recipes in the ‘dropping acid’ book.. it forced me to stop buying packet sauces from the supermarket and buy the raw ingredients.. and some of it was really tasty and yummy. I learnt to cook properly even though it took time.

I purchased a PH meter from Amazon so that I could test what foods I was eating. I also needed some calibrating liquids to calibrate the meter with. It was kind of fun testing lots of food with it.. But it still did not seem to make a difference to me…

What is going on ?

I saw Catherine Fergusson who is an Otolaryngologist – Head/Neck Surgeon..

I explained my symptoms and she decided to examine my throat. She takes me into a room with a screen and explains the procedure. She will spray my nose with a solution that tastes like banana and put a camera up through my nose, then using manipulation will guide it down into my throat to check it.

Before I could freak out a bit I was there and she was checking which nostril was the best one. I was kind of dreading and feeling excited at the same time.

She sprayed up my nose.. waited a little while.. then passed this tube into my nose.. it felt weird like my nose was blocked.. after my nose I have no idea where it went but it was a bit sore as she kept pushing it in..

It wasn’t long until she took it back out.. That was equally as weird as I felt tugging through my nose..

She explained that everything looked ok.. and in her letter afterward diagnosed that I had Laryngopharyngeal reflux (LPR) and a throat spasm. She suggested taking Omeprazole and taking Gaviscon Dual action at night before I went to bed.

I had no idea what that diagnosis was about to do to me but It felt good to have a direction to go towards and hopefully it would solve my problems. It was also told that there seemed to be no damage but some redness and throat pressure

I drove home and can hardly describe how uncomfortable my nose felt afterwards.. It was the absolutely weirdest feeling and felt awful for a while. The banana stuff that had been sprayed up my nose was now in my mouth and tasted blah..

I had an appointment with my Gastroenterologist for a Gastrocopy. I spoke with Dr Griffiths about my symptoms and then I went in for the Gastrocopy.

I went into the theatre and there was a team of about 4 nurses present. They seemed surprised that I did not want to be sedated. I wanted to drive after the procedure and I was curious about the thought of having one done to me.. I had wondered what it would feel like to have a tube down my throat into my stomach.. so that is what I chose so that I would remember it.

I was told to lie on this sloping bed and was draped with some medical cloth. They recorded my name and date of birth. They then sprayed a liquid that tasted like banana on the back of my throat but was quite strong tasting. I then had a black mouth guard type thing put into my mouth that had a hole in the middle of it. The Gastroenterologist explained the procedure and that he would be as quick as possible, then put the tube through the mouth guard and asked me to swallow as he fed it down. It was sore at the back of my throat but I seemed to tolerate it ok. It was not a pleasant procedure but also not the worst (That was to come). I had to fight hard to relax and not to keep swallowing like I was choking as a reflex action. He had a look around and took photos as well as a sample of my throat tissue for testing. I felt like I was starting to get to get to the end of my how much I could handle and it must have only been about 50 seconds.. what felt like longer though when he took it back out again. I thought it might have caused trauma to my throat as it hurt so much but I was fine afterwards.

They let me walk to a lazy boy chair and I had club sandwiches to eat afterwards which was my breakfast after fasting from the night before and I relaxed that it was over.

Dr Griffiths came to talk to me afterwards – he told me that everything looked ok though a little red and gave me a picture of my Oesophagus – Yah… It was gross looking. The biopsy for eosinophilia came back as negative.

I went back to the doctor – as well as having an incredibly uncomfortable throat, I now had the spit and bad chest pain that would keep me up all night. Strangely enough it would be worse at night and seemed to ease a little when I was distracted with either work during the day or watching a movie in the small hours of the morning.

It still seemed to strike me for about 2-3 days per week.. One particular night I had an uncomfortable throat.. Had been spitting mucous all night – and had such a bad pain in my chest that I was distraught by the morning. When I had my uncomfortable throat I would have trouble swallowing food..

I was asked to do another blood test CBC and this time the eosinophils level came back as normal. I had an allergic reaction and a sort of heat rash on my legs at the time of the previous blood test so it could have been that.

I was referred to a Gastroenterologist.

I first felt symptoms in November 2017. I started waking up at about 2-3am in the morning with an uncomfortable throat. It was difficult to swallow and it felt like a lump in my throat.. It is difficult to relate how uncomfortable my throat felt as it was something that I had never been through before. I also had a gurgling sound in my throat.

I had to get up out of bed and my throat would hurt and I would feel spit (non coloured mucous) in my mouth.. it felt really awful to I would need to rush to the bathroom to spit it out.

The pain in my throat was really painful before the mucous.. I would sit up in the early hours of the morning and watch tv.. feeling absolutely miserable and would see the dawn on the 2-3 days that I got this at night.

What was strange was this started a pattern of suffering for 2-3 days every week.. It would give me a few good days before my throat would feel uncomfortable again.

I went to the doctor and I was prescribed Omeprazole and referred to Several blood tests. Mostly general health blood tests but I had a CBC and various renal tests etc.. and found I had slightly elevated eosinophils.

My current status is that I now have just a minor throat inconvenience about once a week which is not a problem and I generally feel fantastic. I  occasionally have a one off bad night.. but nothing as bad as it used to be.. my throat was just feeling uncomfortable at my 3am wake up.. I managed to watch a couple of Rialto movies which is a positive to being awake.

The below is not medical advice but this is what I am currently taking medically.

10mg Citalopram (Seems to deal with the Throat discomfort)

This to me a wonder drug that has taken me from being incapacitated for 2 days out of every week to not only being able to function but enjoy life.. I will now blog about my journey in these other pages..