Silent Reflux... and A Ruined Me

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Introduction

Hiya! After feeling like I'm getting no where, I've decided to join this forum to help me. I've read some of the stuff on here before and it's so lovely and informative and everyone seems to be really helpful, polite and friendly. Considering this, I have decided to join.

Who Am I?

Hiya! My name is Ieuan. I'm from Wales in the UK, I'm sixteen years of age and I'm a boy.

Why Am I Here?

I am here because I need some desperate help, advice, a shoulder to cry on about my ongoing health problem that is driving me around the absolute bend!

What is This Health Problem?

I am awfully convinced that the health problem I am being plagued with is silent acid reflux.

Explanation

I will try and be as concise as possible but I'm known to be vague or waffly, so please excuse me for that.

When I was very young, I used to struggle with asthma, which would always result to a chest infection whenever I caught a cold; this was usually in the form of bronchiolitis. This would usually come across me in the cold and flu season and plague me for the entireity. I also suffered with being sick every morning, bringing up a lot of phlegm and choking on this, which would cause me to yeck and be sick a lot.

After I reached the age of around seven, these previous health issues that plauged me faded away. Sadly, though, at the age of ten, this one symptom resurfaced: being sick every morning. This was happening around halfway through Year 6, though I have always struggled with very plaugesome anxiety throughout my life. I'm extremely squeamish; can't take my own pulse type of squeamish, so developed insane anxiety towards learning Biology in school. It developed so much that it became a phobia. I was getting nightmares, was unable to sleep at night, refused to go to school, constantly worried about it even though it was the Summer Holidays and I had three weeks until I had to go back and learn that dreadful subject. It became a real phobia for me. Crying, running out of the classroom, looking physically ill because of it. I was in a right state! I'm no stranger to anxiety, so my Mum was convinced it was that, which I thought was the case too.

This being sick in the mornings got worse and worse. It was no longer just the mornings - it had spread to happening until the early hours of the afternoon... This went on and progressively got worse when I moved up to Year 7. New school, big place, new people; my nightmare. Understandably, my being sick in the mornings got worse. Mum and professionals at this time (doctors and my pediatrition) were absolutely convinced it was anxiety. Anxiety, anxiety, anxiety.

Just a quick lot of information to help: I've been bullied since Year 3 and this stopped at Year 11. From Years 5 through 9, the bullying for me was at its worst. I also had my sexuality, gender identity and individuality to contend with. I came out as gay at the age of thirteen and came out about my gender identity the year just gone (it's a very confusing concept, so will leave that be). I also have Asperger's Syndrome, being diagnosed in around the late days of Year 8. I think that's an adequate brief...

Back to story: This being sick in the mornings and early afternoon worsened even further. I was starting to be sick around every twenty minutes. Any physical movement seemed to trigger it and it made me feel extremely light headed and disorientated. A good half an hour later, reassurance and a cup of water and a long rest, my teaching assistant would make me try again, only for me to be sick again until I got up to my class, sat down and it faded. This was an extremely frequent occurrence, which paid me way more trips to the school nurse more than physically going to lessons, so this was a big problem. (Starting in mid Year 8, I was also starting to suffer from my voice being very sore and tired each day, which affected my singing all the time, so I gave up in mid Year Nine).

After a long time of everyone and myself assuming it was all anxiety, it faded, all by itself, after I had started swimming lessons again. I was only being sick in the mornings again. This was in late Year 8.

Sadly, after a while, after every outing to the swimming pool, I'd develop cold-like symptoms. Mum was very worried, so kept taking me to the doctors and no avail. We eventually came to the conclusion that I could be allergic to the chlorine, which would have made sense but my symptoms kept getting worse. Was I just allergic to everything or was it hayfever? (I now know it isn't hayfever) Runny nose, bizzare feelings of light headedness, ears popping, inability to swim underwater anymore from the pressure, sneezing constantly, itchiness and temporarily losing my voice. After I get out the pool, everything goes, apart from the sneezing, the cold-like symptoms and the intermittent voice. Come early Year Ten (I had moved schools at the time after being extremely badly bullied and after a case the police had to get involved).

Each time after my swimming session, the day after it, I'd get an extremely dry throat, physically lose my voice and have a deodorant, washing up liquid-like taste in my mouth. It also burned, made me feel really ill and made my throat extremely dry... This lasted for a week up to twelve days each time, only for it to come back every seven-to-twelve days I went swimming again, which was when the 'cold' or the 'allergy' had subsided.

After this happening for so long, I had had enough, so I had quit swimming. This was mid Year Ten. Everything subsided but every month I started to get the same symptoms that would last a week or two and go on their own again.

Come late Year Ten and I was getting the same symptoms all over again but now a few times a week, constantly losing my voice and that absolutely vile taste. My Nan was convinced anxiety was no longer the main cause and suggested that we buy some antacids;(she has silent acid reflux herself) from Zantac to TumTums but these only made me a whole lot worse. (Sorry. I cannot remember timelines exactly no longer, so this will be an disordered sequence of events). I had been referred to ENT about my voice problem and was told that there's a whole lot of inflamation but no nodules, cysts or physical damage to the vocal cords. I was also referred to Gastro and I was given an endoscopy. This proved 'nothing was wrong.' Speech and Language found nothing physically wrong with how I use my voice, so nothing there. I was also referred to CAHMS but was discharged as their support groups were too severe for me.

Here I am at stage one again. Haven't had the endoscopy follow-up test but when asked if we could have pH testing (a whole lot more effective and would prove I have silent reflux), I was denied because I 'could be selfharming my body using envasive medical procedures.' What a load of absolute rubbish! They just don't know what to do so trying to say it's my fault; 'I have a conflicting gender itentity so I lose my voice', 'It's my Asperger's', 'I'm looking for attention', 'I'm just anxious', 'I'm pretending that my suffering is real to get attention.' Oh, the rubbish I have heard!

Life Now

No better but no worse. I lose my voice multiple times per day (I barely speak because of this), I get awoken a few times a week with the horrendous taste, the taste comes and goes when it pleases, stomach pains whenever it wants to, perpetual hoarse voice accustomed with some 'helpful' dryness and constant allergy-like symptoms but antihistamines help most of the sneezing, itchiness, runny nose and dry and itchy ears, face, nose and inside of mouth (post-nasal drip, is that called?) Lastly, I still feel sick every morning but only ever bring up phlegm.

Ugh! Just, so annoying! I used to contemplate suicide because I could not live with it but I get on with it now but I still want solace! If the taste and my losing of voice goes, I'd be over the moon but that will never happen!

Do you see why I think it's silent reflux?

Thank you ever so much for your time and extremely sorry for the length! So much content but I know I've forgotten a tonne! Hope this gives you a clear indication. Thank you!

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5 Replies

  • Posted

    Go back to your GP and ask if you can do a 8 week trial of a PPI like Lanzoprozole.

    If you have reflux your symptoms will probably go away if you are on the correct dose.

    This is usually what GPs do first to see if you have reflux. Then they send you for an endscopy. My endoscopy are clear but I have bad reflux and take 30mg a day

    Best of luck 

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    • Posted

       I forgot to mention. Every antacid I have been put on has made me worse. I do not believe in medication. I really do not agree with it. I was given omerozole, and it made me tonnes worse, like the rest of the antacids and PPIs. I've had both a nasoendoscopy and an endoscopy. Silent relfux causes no visible signs in terms with endoscopy, so it came back clear but my nasoendoscopy came back with soreness around my larynx, and such. 

       Thank you! Best of luck to you too! 

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  • Posted

    Hello,

    That's a lot of trouble you've endured this far in your short life, and you have my sympathy, and empathy on the bullying front, though mine wasn't too bad in comparison, with social anxiety being the hardest thing I had to contend with.

    The taste in your mouth, voice-loss, excess phlegm, could be due to silent reflux, and of course vomiting itself would be nasty on the tissues of your oesophagus, throat and mouth.

    The stress and anxiety that your life and issues involve are two of the worst things for stomach/reflux troubles, causing some or part-causing and worsening others. So the best you can minimise them the better, and maybe read up on anxiety-management techiniques via Google or your doctor. That the endoscopy didn't find anything obviously amiss with your stomach is a good thing.

    You don't mention your diet or eating habits, and these can make a big difference to sufferers of stomach-related illnesses, though silent reflux could still persist when it it the main problem.

    Measures that help me with my stomach trouble may help you in some way if you want to try them. You can see what other sufferers on the site say too. I wish you well.

    Several small/medium meals per day (I have seven, one every two hours or so), rather than fewer bigger ones, so you don't overfill your stomach. Eat relaxed, chew well. Be sat upright for and after meals, not bent or reclining, so you don't squash your stomach and press its contents upwards.

    Fried foods, high-fat foods/meats, dairy, high-salt foods, spicy-hot foods, tomatoes, carbonated drinks, caffeine, alcohol and chocolate can all impact on stomach and reflux troubles for some people, so personal experimentation is key. Minty foods relax the lower oesophageal muscle which can let acid up easier, so they are bad. I use a fruity toothpaste.

    Wholewheat bread, cereals, bananas, hardboiled eggs are a few of the foods that suit me, but there are pulses, rice, various beans (not kidney beans apparently) and many other things to try. Chicken is one of the best meats due to its lower fat content, though even that can hit me and is not eaten lately.

    Stress, excercise and bending activity that pressure and squeeze the stomach are also to be avoided. Be as calm and stress-free as you can.

    Having your last meal a few hours before bed can prevent or lessen reflux at night, but I found that waiting to be too empty caused hunger discomfort and kept me awake. Because of this I lie-down about an hour and a half to two hours after last meal, and this is much better. I lie raised a bit on three pillows, on my right side, which is best for me, though the left side is usually recommended. Other people raise the bed-head itself about 6 to 8 inches.

    Another thing that helps me greatly is to not burp after ten minutes after eating, as this can bring acid up and cause heartburn.

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    • Posted

      Thanks Paul,

      I have been sleeping on three pillows and I found what you said about empty the stomach makes you cant sleep. Same with me. I will try not to burp after meals. I dont know whether my riding bycycle is causing more discomfort for I bent on bikes. I stop it though. Can I ask if you take med for it? if so what is it? I take Nexium but it seems not working anymore.

      Do you feel pain in between chest bones? I found a little bit pain when i foret to take Zantac ? I stop Nexium but I dont know whether the wise thing?

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    • Posted

      Hello thi, it's a matter of burping air swallowed while eating for a little while afterwards, then stopping before the acid and other stomach fluids build up.

      I know Barretts riding his bike had a worsening effect until he switched to handlebars that allowed him to ride more upright, for being bent over will pressure the stomach contents upwards.

      I was on the PPI lansoprazole when the gastritis began, and over two months it helped my inflamed stomach to ease a bit. But then I found that one of its side effects was making my oesophagus feel worse in a different way, and also made my throat and mouth intolerably dry. So I slowly came off the medicine over a few weeks while devising a plan of eating and so on that might help me improve without medicine.

      Over two years I have experimented with various foods, learning which ones harmed and which ones didn't, and that is still ongoing, for without being able to tolerate much fatty food, my weight gets a bit low, so I aim for the highest calorie foods I can eat without suffering. I also have nutrition drinks from the dietician presently, which are a good help.

      If I have an acid burn I will take a strawberry gaviscon tablet or two - not mint, which is a bad thing as explained earlier. But I rarely need to take a gaviscon now, being so rigid with sticking to my frequent medium-sized meals and other rules. It is mostly new foods I try which end up causing me the worst setbacks for a few days or more.

      Yes, the pain can be between my chest bones, and even in my ribs themselves if I have a major setback. Stress too can make it all feel worse - even being too enthusiastic in conversation, for that involves the stomach area muscles and creates tension, pressure, etc. That's why being relaxed and stress-free is definitely best whenever possible.

      If you can do things which help your troubles while not taking a medicine, then you should come to be ok without it, but to just stop a medicine and not change any of the behaviours which caused or worsened the trouble in the first place, like, just for example, eating three large fatty, acidic meals per day, drinking alcohol and so on, then that would likely make the lack of medicine a much harder thing for you. It can also depend on the type and severity of a person's stomach illness, which is why not taking a medicine is a matter for each sufferer to consider, so I don't suggest anyone should do so just because I am managing better without mine. It's a personal and maybe doctor-related choice and experiment. I wish you well. Step at a time.

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