Dysphagia returned out of the blue

Sick of my constant post nasal drip symptoms, I gave up and returned to my Gaviscon Advance a few days ago, as well as stopping my hayfever tablets. Since yesterday morning I've had difficulty swallowing again; I tried to eat soup and even that got stuck. It's scaring me that this has come back again, and I have no idea why. I used to only take Gaviscon once or twice a day like I am now, and this never happened-! What can I do?!

Side notes: My diet's been plain as it can be, I only drink alkaline water, I had a clear Peptest the last time this happened and my pH/impedence test and manometry was clear last time I felt like this a month ago (despite eating junky foods all day which also got stuck)

Daxter and Momma
I've mentioned this earlier but don't know if Daxter saw it or not.

Please consider food intolerance tests. If you are eating something that your body doesn't care for, it will react. As your multiple tests are negative then it seems like food intolerances is the only route you have not investigated.

You mentioned eating junk food-- you just can't eat anything you want and expect healing. And it would be wonderful to have relief with something so simple as eliminating trigger foods. It's worth a try and the healing doesn't occur in a few days. Eating trigger foods for a long time builds up and symptoms show up. Eliminating the triggers allows the body to start the healing process.

Alice makes good suggestions for a food diary and recording your symptoms with date and times as some triggers have a delayed reaction. This will help you take charge of your health. It's work and it works!

There is also the ALCAT test, gold standard food sensitivity blood test that can be done even if you have already eliminated some foods. This is ordered by the doctor, blood drawn and sent overnight to the lab. Results are emailed back to doctor approximately five working days later. Can't comment about insurance as they didn't help ours.

Along with your docs guidance and a free 30 minute consultation with the ALCAT nutritionist-- it will get you started.

Please do not take this as advertisement but trying to share information of alternative with HW forum members. If you want the web site I'll be happy to provide it. Daxter, I'm sorry for all you are going through. Want you to get better soon

Daxter,

It still sounds like crycopharyngeal spasm/dysfunction. Do you have a red throat?
When I first got LPR the only signs were a burning mouth and throat the arches inside my mouth changed colour as did the inside back of my throat, my first peptests showed nothing, yet I was burning like mad and had tongue changes as well. The ENT scoped me and saw nothing, this continued for months until I got the upper dysphagia, even then I got higher UES pressures but no damage on the vocal chords or pharynx.
Then all I could eat was yoghurt and very soft foods, in three weeks my throat really tightened and suddenly I had swollen pharynx and red vocal chords.
I now have a stricture they reckon in my UES and another gastroscopy is scheduled next week to check for nothing sinister.

If you don't have a red throat try eating dairy if you really have LPR it should then show up.

All the best

Pink

1039smooth
Yes , you are helping by telling what you are doing for yourself and trying to get rid of this terrible issue.

What allergy tests are you having completed? A suggestion is to ask for the 'food sensitivity' test. There is a difference between this and the 'allergy' test. Most of the time an allergy refers to an immediate response and the 'sensitivity' can include items that cause both immediate and delayed response. This helps identify triggers that you were not even aware of. Keep in touch and let us know how it helps. We will learn from your experience-- helpful or not. My best wishes! Pat

GC1pink said...
Daxter,

It still sounds like crycopharyngeal spasm/dysfunction. Do you have a red throat?
When I first got LPR the only signs were a burning mouth and throat the arches inside my mouth changed colour as did the inside back of my throat, my first peptests showed nothing, yet I was burning like mad and had tongue changes as well. The ENT scoped me and saw nothing, this continued for months until I got the upper dysphagia, even then I got higher UES pressures but no damage on the vocal chords or pharynx.
Then all I could eat was yoghurt and very soft foods, in three weeks my throat really tightened and suddenly I had swollen pharynx and red vocal chords.
I now have a stricture they reckon in my UES and another gastroscopy is scheduled next week to check for nothing sinister.

If you don't have a red throat try eating dairy if you really have LPR it should then show up.

All the best

Pink

The trouble is I've been at my worst when taking my tests, including my pH impedance and manometry. Peptest have now recommended I don't purchase any more tests, because I've had 25 negative samples in a year. My most recent ones were from when I had no medications for goodness knows how long - still no pepsin detected. According to my ENT there was tension in my throat, but no redness.

The dysphagia comes and goes. If my throat is clogged up or I'm struggling to breath food sticks more often (and yes I took Peptest during these times too). Also if I tilt my head tp the sides or lie on my sides the shortness of breath immediatly begins. It's all so specific but even a salad-diet can't control it-! And why would Gaviscon - the only 'soft food' I have at the moment - make my throat tighten up like this?! I don't dare try yoghurt in case the mucus increases more and makes me pass out.

Post Edited (Daxter) : 7/28/2014 1:59:05 AM (GMT-6)

Daxter and John-

I agree with the others about food intolerences being a possibility. But to go even farther as Alcie did. It may be a specific substance in food. Like something used for flavor, color, preservative, etc.

I am hoping Alcie comes along shortly here. She has been through this and very experienced with the food elimination.

When everything else has turned up nothing it's time to turn over some different stones!


Take care,
Bill

GC1pink said...
Daxter,

Have you ever had a barium swallow when you are having these symptoms and have you had your UES pressures checked recently?

Hope you feel better soon,

Pink

I had a barium last year when I had dysphagia before although I wasn't as bad back then. It happened to improve on the exact day of my test and so nothing showed. I don't know if my manometry recorded UES pressure or not yet, and if it didn't I don't know where I can go in the UK for the right test.

gtothep82 said...
Not sure if this applies to you or not, but when my LPR gets worse my swallowing does as well, and the shortness of breath pops up too. I know this because I usually don't have those problems in the mornings, but once the Nexium wears off in the evenings I usually experience the swallowing problems and shortness of breath. You could try going on Nexium and for a while try avoiding anything that's rich in fiber (veggies, fruit, etc) to see if that helps. Maybe stick to simple carbs and white meat, like chicken (i do well with those) and see if that makes a difference. I went over 2 years where my dysphagia was not too bad, but after I had a stomach bug two months ago, my reflux (LPR) has been acting up and all of a sudden the symptoms are back, mostly in the evenings. However, they aren't as bad as they used to be, which might be due to the fact that I doubled my Nexium to twice a day and I've learned how to deal with this better than last time around. Good luck and hope you feel better!!

All of the 5 PPIs I tried made me worse, some even caused me to run for the doctors..! Incidentally Nexium had the worst side effects on me. There's no pattern to mine in terms of daytime; it does get worse when I walk or turn my head to either side for a while.

Most of the evidence says "No it's not LPR" but I can't deny this all got worse after a worsened diet, and I can't deny Gaviscon helps, even if it only helps a little. I'm so confused, and crying every day - literally I'm begging the gods I don't believe in to make it all stop.

I always do my best to make symptoms appear for my tests, but not counting most of my Peptests they all calm down when I really don't want them to. There was a point where I only had G. Advance at night, and I never had daytime symptoms no matter what I ate. I'm even desperate enough to pin it on hayfever right now. I just need an answer that isn't LPR, and while I will be speaking to my specialist about food intolerance, I highly doubt this will be the answer as there's nothing specific in my diet that affects me more or less.

Post Edited (Daxter) : 7/30/2014 2:37:32 AM (GMT-6)

GC1pink said...
Daxter,

Have you tried making a home made Reza Band prototype and seeing if that works by preventing any reflux into your throat - perhaps that might be worth a try, or contacting the ReZa Band people to see if you could get one?

I'm really sorry you're having such a rough time, believe me I know exactly how it feels, as I lie here in a hospital bed after my 5th gastroscopy and now a stricture in UES because of LPR.

Hope we both feel better soon!

I'm not sure where to look for the details on how to make a prototype; most Google searches lead me straight back to the Reza Band homepage. That and I doubt I could afford to buy the product right now.

Today I've found that, despite feeling better yesterday, I'm worse today than the last 2 days, even though my food yesterday was nothing more than vegetables, and I'm on the maximum dosage of Gaviscon. I'm not short of breath as much but I'm still getting it if I lie on my sides/turn my head, my throat is still chock full of mucus and I'm still getting food stuck. Remember when I said before the Gaviscon immediatly got rid of the dysphagia? Maybe that's not the case after all. I'm not sure if hayfever or stress really is behind all this at this point.

I found something on Google saying all manometries check the upper esophageal pressure to a degree, but I don't know if this is true. It's hell waiting for the specialist appointment, bloody NHS waiting times.

GC1pink said...
Hi Daxter,

I agree about the bloody NHS- however I am very fortunate to have good private insurance, so I am lucky in that regard.

Could you not phone the place you had the manometry done and simply ask them what your UES pressure was.

To make a simple prototype for the Reza Band why don't you try a small bouncy ball with a strong elastic belt and sew or stick on some Velcro to fasten it - all you Re trying to do is fashion a device that will press in on your cricoid cartridge just below your Adam's apple - please don't wear it at night, just during the day so you don't hurt yourself in any way. This could help stop the reflux in your throat at least a bit.

On your last PH study how many instances of reflux did you have?

Thank you, I'll give that a try! I'd get the results now but the specialist I see is away, hence the long waiting time in the first place. To be honest 1 month is no time at all for the NHS..!

My impedance study noted I swallow a lot of air, but did not detect reflux even when my food got stuck, when I got short of breath or when my throat burned or when I got the 'gurgles.' My Restech probe noted some pH drop at night, but my specialist said if I have a dry throat naturally, it may be the cause.