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LPR - VIRTUALLY NO VOICE - CONTINUOUS BURNING

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Posted 4/25/2014 7:38 PM (GMT 0)
Hello, I am new to the Forum. I have read several posts on the LPR on the GERD post and thought of creating a board specifically for the LPR sufferers. I have found comfort in reading that other people, like me, are desperate to get better.

As I wrote in the title I suffer continuous burning, almost continuous ears itching and what is quite serious is that the burning prevents me form talking more than a few words or a few sentences. When I talk notwithstanding the burning sensation the burning becomes needling pain so I stop talking. This is a serius issue as in my job (counsellor and trainer) talking is essential. It means I need to cancel my appointments.

Two weeks ago I gave up resisting the PPI and began Lanzoprazole course 30mg twice a day. No change so far. A few days ago I began an alkaline diet, I am only eating vegetables for the first week. So far non change. I am doing urine test and curiously yesterday I was so happy the PH indicator was on 8, but today all day it has been n 6. Yet I have only eaten vegetables. Any idea? The only thing I have done different is reducing only just slightly the PPI 25 mg il the morning and 25mg in the evening. Could that be the reason?

I have not read many describing the symptom of nearly continuous burning and almost complete inability to talk. I have seen the specialist (two different ones) in two occasions and they only found some redness on the vocal chords - however it has gone worse since.

Need hope that it will go if I continue with the alkaline diet. Your comments and encouragement would be of comfort.

Important question, has someone found out which consultant in UK is most advanced and knowledgeable with latest research? I was thinking of going privately but would like to go to one who knows about the theories of pepsin binding the epithelial cells of larynx, or someone with an open mind for investigating further. Who are the best in UK in this field?

Thanks

Gianna
Posted 4/25/2014 9:48 PM (GMT 0)
Welcome Gianna. Feel sad to hear your problems. Others will be along to answer your post. Please check out this page that covers a UK friend with LPR and how it was treated . He has helped us so much and you can ask him which professor helped him the most. Let us know about your progress. My best to you. Pat

https://www.facebook.com/refluxhelp
Posted 4/26/2014 12:52 AM (GMT 0)
I lost my voice a year ago and have tried everything. I now have what i call suicide pain in my nasal passages, pharynx, larynx and just below the larynx. I begged my doctor for pain pills today but he said just keep taking the ativan which was prescribed for me for the throat lump one year ago. My life is a living hell since the pain went into my sinus cavity. It has actually caused a neural change and i am allergic to everthing i have severe sinus headaches now.

Im afraid it is too late for me because i cant even stand having a tube thru my nose now due to a years worth of damage to my nerves. I was on protonix twice a day for 3 months and it did not help. In fact it just caused malnutrition and a candida infection. I can no longer talk at all without lancinating pain that is unbearable. I have tried, amitriptyline, rememeron, paxil, indomethacin and a dozen other meds and nothing has helped. I am going to try zantac again once at night and one in the morning but i have no hope for relief. I am in the worst pain of my life. It is affecting my lungs and my entire upper airway system. How did your symptoms start?? Mine started overnight when i had a Bravo capsule ph moniter attached to my esophagus. I think the capsule caused my problem by making my LES and UES spasm more than they normally did. I never had any problems before they stuck that thing in me.
Posted 4/26/2014 1:36 AM (GMT 0)
Hello Gianna 14,

I'm very sorry to read about your suffering. I want to let you know about a group on facebook called Laryngopharyngeal Reflux Support. Here's the link: https://www.facebook.com/groups/lpreflux/

I switch back and forth between this forum and the facebook group. The reason I mention the facebook group is that there are quite a few people working through the burning throat issue (some are teachers, some are singers...). I've learned a lot from both places.

PPIs didn't work for me (side effects) so I've been working on diet and lifestyle modifications. My throat does not burn like it used to. It was so painful at first that sometimes it felt like it could explode into flames. I also have a lot of mucus to deal with. The latest diet I'm on is called the Whole30 (I'm on Day 19). www.whole30.com It's based on Paleo principles. The book that explains the diet is called It Starts With Food. You commit to stay on it for 30 days and during that time you really clean up your eating habits. The website explains the diet very well. It's not specifically for LPR but it has helped me. I've also been on Jaime Koufman's Dropping Acid diet (her book is called Dropping Acid and is specifically for LPR. It is worth reading) and Fast Tract Digestion (Heartburn) by Norm Robilliard. If you Google Norman Robilliard you will find his website. Lots of good info there too. I learned quite a bit by reading both of these books and both diets helped me. So now I'm on Whole30 but I apply what I learned from the other books too and they have been good references for me.

I would encourage you to continue with this forum and to try the LPR facebook group too. I hope things improve for you and that you find the help you need.
Posted 4/26/2014 2:49 AM (GMT 0)
Hi Gianna,

Welcome to Healing Well! I see you've already gotten some great advice for some of our outstanding and caring members! I'm sorry to hear you're struggling with LPR symptoms. I know it is very painful and frustrating, and I hope you find answers soon. Glad you've joined the forum!

Best wishes,
Denise
Posted 4/26/2014 7:43 AM (GMT 0)
Gianna,

I have LPR and voice issues. I was put on different kinds of PPIs, even on maximum dose, but they didn't help because it turned out I had weakly acid / non acid reflux.

Have you had the impedance pH test? It is essential to find out what kind of reflux you have. If you have weakly acid / non acid reflux then PPIs probably not going to help you.

The thing that really bothers me is that doctors automatically assume patients' reflux is acidic and prescribe them PPIs. No test, PPIs straight away. In my opinion, they should do the test first then prescribe the necessary drugs.
Posted 4/26/2014 11:33 PM (GMT 0)
well all of this is really scary. I honestly wish you all speedy recovery. I have reflux and constant burping which i feel is effecting my nerves and larynx phyrnx etc
Posted 4/27/2014 12:42 PM (GMT 0)
3333,

If you have weak acid reflux and non acid reflux may I ask what medication you are on - and do you do anything else to help cure the LPR?

Many thanks,

Pink
Posted 4/27/2014 6:09 PM (GMT 0)

GC1pink said...
3333,

If you have weak acid reflux and non acid reflux may I ask what medication you are on - and do you do anything else to help cure the LPR?

Many thanks,

Pink

I had tried different kinds of PPIs, Amitriptyline, Domperidone, Gabapentin, Prednisone, Gaviscon and Sucralfate. Not currently on any meds because none of those helped.
Posted 4/28/2014 11:32 PM (GMT 0)
So sorry to hear about your symptoms. I also have LPR with voice issues. It all started about 5 years ago for me. I was in the choir at my university and had to drop due to voice issues. I also have had difficulty at my previous job because it was difficult to use my voice. The pain in my throat was awful. Similar to your situation, I felt terrible pain but the ENT reported only minor reddening in my larynx. However about 5 years later my voice is at about 80% and my daily life is not affected. The only inconvenience is that I can no longer yell or sing, which doesn't bother me too much. What made the difference for me was the PPI. My doctor started me on Dexilant 60mg, and it has been a lifesaver. The thing with PPIs is that it takes a long time (6 months or more) for them to make a significant difference, (in my case it took almost a year). My advice would be to stick with the PPIs.

Again, sorry to hear about you are going through. You are not alone, and are in my thoughts and prayers. Hope you feel better soon!
Posted 4/28/2014 11:54 PM (GMT 0)
I am wondering how one gets it like over night? or do we have it for years and not know till one day it just goes haywire?

anyone have any idea on this?
I never thought I had reflux but it seems that over night I got and it hit full force
in my nose and throat and as you said cant hardly talk it exhausts me something bad to use my voice

getting frustrated because the Prilosec isn't working well
Posted 4/29/2014 5:39 AM (GMT 0)
seemed to happen almost overnight to me too. As far I know, the mechanism that brings on reflux is unknown. I've heard theories about vagus nerve problems, hernia, etc. Might be a multitude of factors.
Posted 5/5/2017 8:26 AM (GMT 0)
Gianna

I know this is an old post,but I currently have similar symptoms to you. Are you still online?
Posted 5/5/2017 3:18 PM (GMT 0)
Gianna has not posted here at Healing Well in 3 years. I looked to see if an email address listed but there wasn't one. I hope you can get some help.
Posted 5/5/2017 6:23 PM (GMT 0)
Thanks Susie.
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