Laryngopharyngeal Reflux

[Columbo70]

Lost my voice and developed a very very very sore throat over several weeks. Apart from the unbearable vocal cord pain, i also had a number of other symptoms: feeling of a lump in back of my throat, constant throat clearing, mucus build up in throat, swallowing issues. It was extremely painful, frightening and perplexing, a situation compounded by not being able to talk. I’ve previously had claustrophobia and these symptoms catalysed a number of repeated panic attacks and racing, catastrophic, even suicidal thoughts as the torture continued uninterrupted for several weeks with no diagnosis of any kind in sight from my GP.

My wife started doing her own research of the clinical/scientific/medical literature and she suggested that i might have laryngopharyngeal reflux, which I’d never heard of before. As this was all happening over Christmas i went on a low acid diet (as best I could, some of the info on refluxogenic foods is confusing and contradictory), 2X PPI (was already onn1X PPI as have had two MIs in 2020 and 2022 respectively), drinking Gaviscon Advance after meals, sleeping onna sloped bed, etc. Eventually saw an ENT specialist and he diagnosed Muscle Tension Dysphonia (MTD) based on the laryngoscopy and he dismissed all talk of laryngopharyngeal reglux. On his advice I arranged vocal therapy sessions and abandoned the low acid diet, gaviscon, etc. Three days later all my LPR related symptoms returned with a vengeance. I also had a positive PepTest result for Pepsin in my throat from UK lab that sells that test. Went back to ENT specialist and he wasn’t for turning on his previous diagnosis. Nevertheless I am proceeding on the basis thst i have both, so back on low acid diet, Gaviscon, etc. As I still have s number of symptoms and sensation of acid running up my esophageus i sm now seeking a consultation with a gastroenterologist so he can examine thibgs further down than my throat.

Anyone had either Laryngopharyngeal Reflux and/or Muscle Tension Dysphonia?

I am finding it very difficult to live with the physical symptoms and chronic throat and esophageal pain. It’s very depressing and oppressive and hard to feel part of things or work when you can’t think or relax because of the insidious symptoms and chronic pain.

[Cat715]

Could you maybe have a private consultation with a gastroenterologist so that you can be seen quicker ( if you can afford it) then go back on nhs ).

[Columbo70 in reply to Cat715]

yes, am seeking a private consultation with a gastroenterologist. It would probably take several months or longer via the public health system

[Moshlaintemhaith in reply to Columbo70]

Hi Columbo, I'm in Ireland too and I really feel for you. You definately need to go the private route and see a private consultant. I've had reflux/ Gerd for over 20 years. It was caused by a hiatus hernia which was probably there from birth. At its worst the symptoms were quite similar to yours. The first operation to repair the hernia ( 15 yrs ago) was like a miracle but unfortunately the stitches pulled ( not the medical term??) after about 4 yrs. I was in dreadful pain, could only eat baby food but my GP was useless! Once I got to see a consultant I had various scans etc and then another operation to repair the hernia. I am quite well now but will be on PPI fir life.

That's a long winded way of saying that the private route is the only way in Ireland!!

[Columbo70 in reply to Moshlaintemhaith]

Hi Moshlainemhaith, tá súil agam go bhfuil do slainte ar fheabhas faoi lathair. Yes, I’m pining my hopes on private consultation route, every day seems long at the moment due to the severity of the symptoms. I do have a hiatal hernia on a list of things to be assessed and ruled in/out by the consultant. Are there any patient representative/support groups in Ireland for LPR/GERD thst you’re aware of?

[Moshlaintemhaith in reply to Columbo70]

No support groups that I'm aware of.

[Columbo70 in reply to Moshlaintemhaith]

i was diagnosed with hiatus hernia in the meantime

[Columbo70 in reply to Cat715]

I’m in Ireland, our public health system a lot worse than your NHS (notwithstanding the challenges in your NHS it is superior to ours by a long way)

[Purplecream]

Sounds very challenging. I have had something similar and have recovered with rest of vocal chords and voice exercises. Some mild occurrence but not as bad. They also thought was linked to chronic fatigue syndrome but never fully resolved. Determination to get back to work helped and re-engaging with things I enjoyed apart from ones that overused my voice and pacing of activities.

Hope you find a way forward.

[Columbo70 in reply to Purplecream]

Yes, am off work since Christmas and initially resting my voice, and then doing the vocal exercises daily. Voice has improved, unfortunately the reflux related symptoms persist with a vengeance which takes the good out of everything

[Columbo70 in reply to Purplecream]

What kind of voice exercises did you do? Mine ate mostly stretching excercises

[Davey77]

I had this temporarily when a doctor forgot to say an antibiotic should be taken with food. I was on my last day of the course, believing I had a bug, when I woke up with the taste of acid in my throat and realised what was happening. I looked at the leaflet and it was listed as a rare side-effect, although it didn't point to reflux as the cause. Once I stopped the meds, it stopped getting worse but took a while to fully recover. I believe there are some new options for dealing with acid reflux that you should discuss with your GP if conventional ones aren't working

[Hidden]

Hi Columbo70, I know exactly how you are feeling. I have a hiatus hernia and every now and again I have a reflux flare up. I can normally keep it under control. Many years ago I was prescribed Lansoprazole, which worked well. About a couple of years ago I was able to stop this medication after seeing a consultant, but if I get a flare up, then start taking them again. Everything was fine until I was prescribed statins Atorvastatin. The reflux returned with a vengeance, causing pain, discomfort, intestinal problems, the reflux, would go right to the throat, cause a cough and a sore throat. It would be worth checking this out with your GP, they may be able to prescribe medication. I had to up my Lansoprazole and my diet had to be very bland. I am into day 3 without statins and my gastro-intestinal problems have calmed down, I hope you get this sorted out. I do know how you feel.

[Columbo70 in reply to Hidden]

I am currently on atorvastatin!

[Columbo70 in reply to Columbo70]

And have been last two years

[MoretonCross]

I recognise some of those symptoms! I'll respond properly when I'm on my computer later this afternoon, I can't be arsed trying to converse on a phone...

[Columbo70 in reply to MoretonCross]

Thank you!

[MoretonCross in reply to Columbo70]

(On computer now.) I have acid reflux problems, but the symptoms aren't as severe as yours. I have the extremely sore, burning even, throat particularly on the right side. I mostly sleep on my right side, so I think the reflux happens while I'm asleep. I'm not aware of it during the day. I've had the examination up my nose then down into my throat, and also the "barium swallow" procedures, and nothing sinister found thankfully. So now I'm attempting to eliminate acid foods, and this seems to be helping. I now have almost normal saliva production, although I still have the mucus build up (less than it was), and the painful swallowing (again not as bad as it was). I'm trying not to involve doctors anymore, and I'm hoping not to require any medication as I'm on enough as it is.

Your final paragraph above really hits home, and I feel for you. I'll just say that I do Reiki and meditate and it all helps me to relax, and I think maybe the more relaxed we are the easier things become and easier to deal with. Would you consider anything like that? There are all sorts of "alternative" treatments available, and while I don't believe in miracle cures, possibly it's a route worth travelling?

All the very best anyway.

[Columbo70 in reply to MoretonCross]

thank you so much for your reply. The main symptom that I find upsetting and unsettling is the sensation of a rumbling, erupting volcano in my throat. Sometimes I go outside to breathe cold air in a vain attempt to cool it down somehow. I find it impossible to participate in the world when my throat is like this. I do cardio rehab regularly which helps, although my participation has dropped off since my reflux issues kicked off about 8 weeks ago.

[ChristianeL]

I had very similar symptoms after I was diagnosed with dilated cardiomyopathy. 3 days after I started the medication I had similar symptoms as you describe. I also lost my voice. I was diagnosed with Hiatus Hernia before but it was symptom-free until I started the heart medications. Which medications are you on? My symptoms have improved since I'm on the 3rd PPI (Pantoprazole) since September on the double than normal dose. The first two PPIs didn't do anything. Pantoprazole took 4 weeks to kick in. I'm symptom-free for a week now. Fingers crossed!

[Columbo70 in reply to ChristianeL]

I am on Pantoprazole. Was originally put on that once a day after my second Myocardial Infarction. When the whole reflux situation occurred over Christmas i was then put on a 2X regimen. Some of the scientific literature suggests PPIs are no better than placebo dealing with reflux but i sm reluctant to experiment and make changes to more than one variable when i am feeling so unwell.

[ChristianeL in reply to Columbo70]

I don’t think the placebo theory is true. It totally works for me (at the moment) and I can finally bear my medication cocktail. Which heart medications are you taking?

[Columbo70 in reply to ChristianeL]

Ramipril, Atorvastatin, Prasugrel, Pantoprazole and Bisoprolol. Another respondent to my post has suggest Atorvastatin might be the problem.

[ChristianeL in reply to Columbo70]

Interesting. The only medication we have in common is Bisoprolol BUT I was on Ramipril till December and developed a Ramipril cough. So I was moved to Entresto. I wonder if my sudden improvement is also linked to moving away from Ramipril (and adding Pantoprazole on top).

[Columbo70 in reply to ChristianeL]

Too many medication variables/combinations to figure it out!

[ChristianeL in reply to Columbo70]

Yes indeed. I’m on 9 different ones. 😬

[Lowerfield_no_more]

I can only offer a few suggestions which may help your situation having been diagnosed with and treated for reflux disease over a 15 year period during which I have taken PPIs and will no doubt have to continue to take them. I keep my symptoms at bay( mostly) by adopting diet and physical measures although have relaxed some of them over the years. Dietary things to avoid include foods that promote gas (e.g onions),acidic ( e.g citrus), relax the lower sphincter,(eg coffee and chocolate, and irritants (spicy and alcohol). I also avoid eating a lot of meat since that takes a long time to clear the stomach. I have found that there are trigger foods that give me a relapse so I avoid them. A food diary will help you identify what they are. If I get a relapse it's back to bland diet basics to allow the body to heal and settle down. Physical means avoiding eating at least three hours before going to bed, avoiding bending if possible ( compresses the abdomen), not lying on right side when in bed, and avoiding large meals which encourages bloating. What you have and I have suffered is very debilitating and can become serious if not treated, so I hope you get sorted asap.

[Columbo70 in reply to Lowerfield_no_more]

I have also already adopted many of those changes e.g. avoiding so many foods that are considered refluxogenic, eating quite bland foods (no sauces), eating earlier, drinking alkaline water, drinking Gaviscon Advance after meals, sleeping on a sloped bed, etc. Not sure I’m seeing the dividends in terms of my symptoms yet.

[Lowerfield_no_more in reply to Columbo70]

Having reread your posts I find it puzzling that no-one has so far suggested you having a gastroscopy to find out what is going on further down your oesophagus, although that may well be the outcome after your consultation with the gastro specialist. Certainly one of the symptoms of reflux disease are reflux back up to the throat, and therefore without knowing more of your circumstances there a possibility of a hiatus hernia and/or simply a weak sphincter. I certainly have the latter and possibly the former as well.

[Columbo70 in reply to Lowerfield_no_more]

yYes, next step is an appointment with the gastroenterologist and probably/hopefully endoscopy. Have arranged a helicobacter pylori test in a private lab while I’m waiting.

[Columbo70 in reply to Lowerfield_no_more]

Had gastroscopy and hiatus hernia detected.

[Purplecream]

Vowel sounds and up and down scales humming simple tunes etc.

[Columbo70]

After being in 24/7 chronic pain for 5.5 months, figured out it was unlikely to be reflux as my throat burning pain was constant. It didn’t go up or down. Was prescribed Amitriptyline for pain management and view from specialist pain team was that i had nerve pain from a hypersensitive and hyperactive nerve which went into overdrive and couldn’t stitch itself off after the initial throat issues i had. The nerve pain was worse when I ate, which made me think the burning in my throat and upper esophagus was reflux. It looks now like it was nerve pain. Once the pain levels went down i returned to eating normally with no reflux type symptoms.