LPR and shortness of breath?

Posted by LPRSOB @jdbarr1, Jan 28 2:58am

(INTRO) I am writing this to see peoples' experiences with LPR and shortness of breath. There are lots of other issues that I will describe, but it seems LPR is what is causing my main issue so that is what I am focused on. (PSYCHOSOCIAL)- For context I am a 31-year-old single male who lives with their parents and is unemployed. I am severely dissatisfied with life at the moment and am cutting out a lot of information because this post is already a novel (sorry!!!). Here is some background then a few questions at the bottom.

(MENTAL HEALTH) Age 15: Diagnosed with Anxiety and Depression. In my 20s I found out I had OCD and experienced Agoraphobia. I believe I have sensorimotor OCD where I focus on my body too much and it impacts certain bodily functions. The symptoms have changed over the years. Everything from not feeling I could walk right, my arm feeling numb and not knowing where to place it when sitting and other things that I won’t mention so as not to trigger any anxious people. Anxiety caused me shortness of breath as the main symptom. The SOB I felt was different than what I am feeling now to be clear though.

(BEVAVIORAL HISTORY) Age 18: I began to smoke ½ pack of cigarettes per day and marijuana every day. I smoked cigarettes until I was 28 and marijuana until I was 29. The marijuana helped with my anxiety, and I didn’t want to be put on daily benzos as SSRIs did not work. I tried like 8 of them, including SNRIs.

(LPR DIAGNOSIS) Age 28: I had trouble swallowing. This wasn’t the first time- as a teen I had trouble, but a Barium Swallow came up empty. This time I did a similar test and was diagnosed with LPR/Vocal Cord Dysfunction.

(LIFE STRESS) Age 28 & 29: I went through lots and lots of stress. Financial, occupational (let go from my job), family issues etc. I even moved. This was during the pandemic. During this time, I quit smoking because every time I smoked, I felt short of breath and my sides hurt. My sides still hurt to this day when I poke them. I was put on daily Clonazepam during the period I was stressed at my job before being let go.

(SOB FROM SIMPLE TRIGGERS) Age 30- I started to get short of breath when I came into contact with the simplest things: car exhaust, someone smoking a cigarette a hundred feet away. These episodes would last for many hours. The only things that helped were talking to a loved one about it, my anti-anxiety medication (Ativan), or falling asleep and it is better in the morning. However, somehow, I got over it. I think it had something to do with getting checked out by doctors (they said I had light asthma but nothing that could cause what I was feeling). And my psychiatrist also made the point he was taking me off daily benzos and my nervous system is all out of whack. He assured me it was likely just my brain triggering myself as my doctor had told me it’d be highly unlikely that I would be getting physically triggered in the situations I found myself in.

(SOB FROM VERY SMALL AMOUNTS OF FOOD TRIGGERS) Age 31- This is where I am now. I am getting short of breath from the smallest amount of trigger foods: chocolate, soda, citrus etc. This is while being on high doses of Esomeprazole and Famotidine too. I did a 12-week acid free diet and that didn’t seem to heal anything. I have a hiatal hernia so I have to continue on PPIs. The shortness of breath just continues and continues. I try exercises from my therapist, distraction etc. Lots of things. Nothing so far works outside of talking to family, benzo doses as needed, and falling asleep usually waking up feeling better.

(SOME STEPS I HAVE TAKEN) I have raised my bed. Smaller meals. Tried so much. I avoid trigger foods as well, but I have rare moments of weakness. I get overwhelmingly depressed or angry about my life situation (lots of things going on I can’t write for the sake of brevity), and I eat small amounts of trigger foods.

(DIAGNOSES) Does anyone have any insight on this? I have had diagnoses (Rhinitis seemed like guess though) of Non-Allergic Rhinitis, Light Asthma (NO was 18 and 16 was cutoff), LPR/VCD, various stomach disorders, and of course mental health issues.
I believe the LPR is the main issue with my breathing, and I think that anxiety fuels it as well. I eventually was put on a daily benzo before losing my job and I am coming off it extra slow. The issues precede me coming off of it. I had previously come off lower doses of benzos as well and this never happened.

(QUESTION 1; DURING EPISODES) What can I do during an episode? Has anyone had success intervening when it has already started?
(QUESTION 2; PREVENTING EPISODES and LENGTH): Outside of the typical lifestyle changes for LPR, has anyone found a good way to prevent episodes? How long do LPR shortness of breath episodes last for you?
(QUESTION 3; PSYCHOSOCIAL/PSYCHOSOMATIC) Could this all (or most) just be a consequence of severe life dissatisfaction? If so, how can I use that information to stop the symptoms? I am trying to move out of my parents’ home, get a job etc. but other health issues are making me disabled. I am trying though. It is just a lot.

(CLOSING) I could just use some support, education, and tips from people in a similar boat. I thank everyone who reads this in advance.

Interested in more discussions like this? Go to the Digestive Health Support Group.

Have you joined any LPR groups on Facebook? I think anxiety could worsen it. I suffer from presbyesophagus and take 20 mg of Amitriptyline. Have you done a esophageal manometry test? Are you using an inhaler for Asthma?

REPLY

What worked for me with LPR was complete diet change: whole food diet and low acid food. I also drink filtered water with pH balancer drops added because a lot of filtered water is high in acid. Whole food has been processed or refined as little as possible and is free from additives or other artificial substances. If you embark on a whole food diet you say goodby to 90-95% of the food found in grocery stores. Look at the ingredient labels, avoid those with more than three ingredients and that contain acid (which is used as a preservative). The acid watcher diet warriors group is great in providing whole food recipes.

Resources: https://jamiekoufman.com. Also a ton of great food recipes: https://www.facebook.com/groups/199013402360712

Stress plays a big part of LPR as you know already. Dr. Koufman talks about vagus nerve dysfunction playing a role in some people. You have to explore different treatment options and carve a path. If a doctor can help with that, great. Many people have had to figure it out on their own working with online resources that they deem responsible. Both Koufman and Dr. Jonathan Aviv have books on reflux and diets.

When my throat hurts from LPR (much less now as I am on the whole food, low acid diet) I found that drinking warm water provided relief. I don't like tea, I suppose most people would just drink tea (low-acid type). My postnasal drip is much less on the diet.

You have undoubtedly heard that breathing exercises, e.g. box breathing, and meditation are options to explore in managing stress. Petting animals are good de-stressors. You could volunteer at a shelter to get some good pet time in. Or take advantage of visiting friends' pets if that's ok with them. Maybe volunteering or taking up a hobby that brings you joy and/or satisfaction will help address stress. Group activities may bring you some social support with little stress. For instance I play pickleball and find that a good social outlet. Board game groups, line dancing, whatever may be your thing.

Good luck on your journey. This disease overwhelms everyone in the beginning. Once you set a path and see progress, it will get a easier. You have a lot going on so don't forget to see the little victories along the way.

REPLY

jdbarr1

I'm glad some other members with knowledge have answered your post.
All I can add is
GOOD for YOU! You deserve a lot of credit for reaching out for help! It can take a lot of strength and courage to do so.
Sending blessings your way!

REPLY
@jackielb

Have you joined any LPR groups on Facebook? I think anxiety could worsen it. I suffer from presbyesophagus and take 20 mg of Amitriptyline. Have you done a esophageal manometry test? Are you using an inhaler for Asthma?

Jump to this post

Hi!

Thank you so much for your reply.

Anxiety definitely is worsening it. I don't know which is causing it more, the LPR or the anxiety. The consensus among my providers is that it's just a vicious cycle of both.

It's funny you mention the manometry test because my doctor just ordered it for me a few days before I posted here. She said it will take a long time to actually get it scheduled and completed, but I am waiting for them to call me for scheduling right now.

I do not take an inhaler because they never worked for me. I saw a pulmonologist who said that my PFT showed very light or early onset asthma. However, when I told them the inhaler didn't help at all and my lung scan was clean, they said I might not even have an asthma issue.

Is your medication for anxiety? Does it help? I will look up those Facebook groups!

REPLY
@baguette

What worked for me with LPR was complete diet change: whole food diet and low acid food. I also drink filtered water with pH balancer drops added because a lot of filtered water is high in acid. Whole food has been processed or refined as little as possible and is free from additives or other artificial substances. If you embark on a whole food diet you say goodby to 90-95% of the food found in grocery stores. Look at the ingredient labels, avoid those with more than three ingredients and that contain acid (which is used as a preservative). The acid watcher diet warriors group is great in providing whole food recipes.

Resources: https://jamiekoufman.com. Also a ton of great food recipes: https://www.facebook.com/groups/199013402360712

Stress plays a big part of LPR as you know already. Dr. Koufman talks about vagus nerve dysfunction playing a role in some people. You have to explore different treatment options and carve a path. If a doctor can help with that, great. Many people have had to figure it out on their own working with online resources that they deem responsible. Both Koufman and Dr. Jonathan Aviv have books on reflux and diets.

When my throat hurts from LPR (much less now as I am on the whole food, low acid diet) I found that drinking warm water provided relief. I don't like tea, I suppose most people would just drink tea (low-acid type). My postnasal drip is much less on the diet.

You have undoubtedly heard that breathing exercises, e.g. box breathing, and meditation are options to explore in managing stress. Petting animals are good de-stressors. You could volunteer at a shelter to get some good pet time in. Or take advantage of visiting friends' pets if that's ok with them. Maybe volunteering or taking up a hobby that brings you joy and/or satisfaction will help address stress. Group activities may bring you some social support with little stress. For instance I play pickleball and find that a good social outlet. Board game groups, line dancing, whatever may be your thing.

Good luck on your journey. This disease overwhelms everyone in the beginning. Once you set a path and see progress, it will get a easier. You have a lot going on so don't forget to see the little victories along the way.

Jump to this post

You're amazing. Thank you for your wonderful response.

I already eliminated the typical "culprits" with high acidity, but I have never taken it as far as you're talking about. Which I need to do! I picked up the The Acid Watcher's Diet from the library. I will get into that Facebook group. Thank you for those resources!

I was told to drink alkaline water between 8.5 and 14 ph. I tried some the other day when I was having an episode but it didn't really help. Is it something I have to be drinking all the time? Is the pH it more preventative and not so much once the ball gets rolling?

In regards to Vagus Nerve Dysfunction- I am coming off of a benzodiazepine. Do you think there is a chance that my "wires have been crossed" and that is making things much harder with the LPR? Or could I be overstating that impact?

How does postnasal drip feel for you? I have always wondered if I have it but I don't know if I do. Do you have that separate from the LPR or is it all related? I always thought of it as an allergy thing, but all of these conditions seem so interconnected it's been driving me nuts trying to understand things.

All of those psychosocial suggestions are fantastic. I do some already (I have a very cute little dog) but volunteering at a shelter is something I have wanted to do and haven't done yet. That might be next on my list.

You are definitely right. I am completely overwhelmed. I'm so thankful to have found this message board.

REPLY
@annewoodmayo

jdbarr1

I'm glad some other members with knowledge have answered your post.
All I can add is
GOOD for YOU! You deserve a lot of credit for reaching out for help! It can take a lot of strength and courage to do so.
Sending blessings your way!

Jump to this post

Thank you so much!!! What a fantastic group.

REPLY
@jdbarr1

You're amazing. Thank you for your wonderful response.

I already eliminated the typical "culprits" with high acidity, but I have never taken it as far as you're talking about. Which I need to do! I picked up the The Acid Watcher's Diet from the library. I will get into that Facebook group. Thank you for those resources!

I was told to drink alkaline water between 8.5 and 14 ph. I tried some the other day when I was having an episode but it didn't really help. Is it something I have to be drinking all the time? Is the pH it more preventative and not so much once the ball gets rolling?

In regards to Vagus Nerve Dysfunction- I am coming off of a benzodiazepine. Do you think there is a chance that my "wires have been crossed" and that is making things much harder with the LPR? Or could I be overstating that impact?

How does postnasal drip feel for you? I have always wondered if I have it but I don't know if I do. Do you have that separate from the LPR or is it all related? I always thought of it as an allergy thing, but all of these conditions seem so interconnected it's been driving me nuts trying to understand things.

All of those psychosocial suggestions are fantastic. I do some already (I have a very cute little dog) but volunteering at a shelter is something I have wanted to do and haven't done yet. That might be next on my list.

You are definitely right. I am completely overwhelmed. I'm so thankful to have found this message board.

Jump to this post

Alkaline water should be all the time. It helps to kill the digestive enzyme pepsin that gets lodged in our throat tissue. Dr. Koufman also suggests spraying the water into the back of your mouth. Some people also use it as nose drops. Dr. Koufman suggests a filtered water pitcher brand, and today on her blog she noted which pH balancers work if you already have a filtered water pitcher that makes the water acidic.

For episodes you can try the usual antacid tablets, Gaviscon Advance (order from Amazon, from the UK), or warm water if the episode is coughing or the globus sensation.

For me postnasal drip comes out the nose and down the throat; with the latter I am hacking up phlegm periodically. And coughing. It has subsided when I do the diet properly.

Your postnasal drip may be allergy related. The one ENT I saw said that to me. He scoped only my nostril, not my throat, so he missed the opportunity to explore whether I had LPR. But I had a sore throat for about 1.5 years and that is gone so I think for me while I may have allergies I also have LPR.

I have no idea if the drug you are coming off of could affect the vagus nerve. I have found that following the suggestions for LPR/GERD has helped my health overall whether I know what specifics are going on. I am learning about fillers and acid in processed food/supplements/vitamins and that some people can have bad reactions to these ingredients, even if it's at a low-level so it's not as obvious as breaking out into hives.

All you can do is follow processes that work for others to see if they work for you, find a medical team that is competent and caring, and find joy every day doing whatever it is that brings you joy and satisfaction. You can do this!

REPLY

All I can add is that I understand how this illness can overwhelm you. It has drastically changed my life. I also experience terrible anxiety. I have taken to meditation, and prayer, and I find that to go outside, and walk, walk walk, and breathe in the fresh air and amaze myself at the God given beauty all around me. If the weather is too bad, I will walk in other places. Exercise, meditation, and prayer are my way of working out my anxiety. I wish you the best .Good for you for reaching out.

REPLY
@rosemaryhow

All I can add is that I understand how this illness can overwhelm you. It has drastically changed my life. I also experience terrible anxiety. I have taken to meditation, and prayer, and I find that to go outside, and walk, walk walk, and breathe in the fresh air and amaze myself at the God given beauty all around me. If the weather is too bad, I will walk in other places. Exercise, meditation, and prayer are my way of working out my anxiety. I wish you the best .Good for you for reaching out.

Jump to this post

Thank you for this. I hope it gets better!

REPLY
@baguette

Alkaline water should be all the time. It helps to kill the digestive enzyme pepsin that gets lodged in our throat tissue. Dr. Koufman also suggests spraying the water into the back of your mouth. Some people also use it as nose drops. Dr. Koufman suggests a filtered water pitcher brand, and today on her blog she noted which pH balancers work if you already have a filtered water pitcher that makes the water acidic.

For episodes you can try the usual antacid tablets, Gaviscon Advance (order from Amazon, from the UK), or warm water if the episode is coughing or the globus sensation.

For me postnasal drip comes out the nose and down the throat; with the latter I am hacking up phlegm periodically. And coughing. It has subsided when I do the diet properly.

Your postnasal drip may be allergy related. The one ENT I saw said that to me. He scoped only my nostril, not my throat, so he missed the opportunity to explore whether I had LPR. But I had a sore throat for about 1.5 years and that is gone so I think for me while I may have allergies I also have LPR.

I have no idea if the drug you are coming off of could affect the vagus nerve. I have found that following the suggestions for LPR/GERD has helped my health overall whether I know what specifics are going on. I am learning about fillers and acid in processed food/supplements/vitamins and that some people can have bad reactions to these ingredients, even if it's at a low-level so it's not as obvious as breaking out into hives.

All you can do is follow processes that work for others to see if they work for you, find a medical team that is competent and caring, and find joy every day doing whatever it is that brings you joy and satisfaction. You can do this!

Jump to this post

Thank you! You have been a great help.

REPLY
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