LPR & Severe Breathing Problems

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food as medicine works best - 100.0%
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elky
New Member


Date Joined Oct 2013
Total Posts : 7
   Posted 10/21/2013 3:54 PM (GMT -6)   
I was diagnosed with a hiatal hernina in March 2013 and was just recently diagnosed with LPR by an ENT. I have been to 25+ doctors who could not figure out my severe SOB. I think the fact that a had an upper left lobectomy and thoracotomy in 3/2012 was throwing them off. A very small, early, slow-growing carcinoma 8mm was removed 1a no-spread and surgeon says I should live a long healthy life.....
So, since March it feels like I cant breathe, my throat feels like it is closing, i feel like my heart is coming out of my throat, lots of palpitations. It is oddly and totally relieved by percocet every 4 hrs, that I am taking for post-thoracotomy pain. As soon as it wears off i cant breathe again.
Does this sound familiar to anyone with GERD or LPR. CT scan of lungs are fine and so are lung function tests. I've read that it may not be "gerd" per se but Vagus nerve damage or irritation. From surgery or from too much acid?
Could acid be damaging my lungs? Most doctors know VERY little about this apparently. One doc thought esophageal spasms. Worried about throat closing up and dying from this (live alone)
Gastro doc has me on dexilant and ENT added 300 mg zantac at night which i cant tolerate (burns and comes back up)
So confused!!! Any help w/info would be so appreciated.
Do I need a neurologist for vagus nerve ? do I need a better gastro doc>
do I need a better ENT doc? better pulmonolgist ?
Live in NJ across the river from NYC. Please suggest any expert doctors.
THANKS ALL !!!!

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 10/21/2013 5:22 PM (GMT -6)   
I'm not sure what percocet is, but I'm guessing it has somekind of anti inflammatory response to it? I know when I am giving tramadol I can breathe a little bit better. I've been to dozens of doctors too, it's sad. I have VCD. My vocal cords don't allow me to breathe like a normal person because of the reflux getting up to my throat. If you have the money, jamie koufman is downtown manhattan, but it's 1000 bucks to see her.

It seems like breathing is starting to be a big symptom on these boards lately. Lpr is a terrible thing...

Post Edited (TheSiXness) : 10/21/2013 5:25:26 PM (GMT-6)


Desiree7140
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/25/2013 9:13 AM (GMT -6)   
TheSixness, I read some earlier posts of yours about the Vocal cord dysfunction and I think I am in the EXACT same spot you are. Started out thinkng I was getting bronchitis often, had severe heart burn. Woke up one night gasping like the air was on fire! I think the acid burned my lungs/and or throat and havent felt the same since. Went to ER and Was on so many meds at the same time with three diff docs that I ended up with severe tachycardia and side effects you wouldnt believe. I decided to get off all of the meds and see what symptoms I was really left with. After eating better, aloe vera juice for acid reflux, and cordyceps for lung strength suppliments, I am left with what i believe is vocal cord dysfunction. I saw an ENT and he did a scope to look and said the cords were pretty swollen but not much about what to do besided take PPIs which I DO NOT want to deal with the side effects from. It was almost controllable but recently we put on the heat in our house which must have set off dust everywhere and of course, that night I was sent right back to the beginning of feeling complete and utter panic from no air and throat closing. So much seems to irritate the throat and lungs now. :( Acid seems (could be wrong) to be under control but this VCD is still a persistent B****. It'd be nice to hear from people like us. I feel SO alone sometimes.

Desiree7140
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/25/2013 9:14 AM (GMT -6)   
Forgot to mention, I was diagnosed with a hiatal hernia and gastritis also. NO fun. I always feel a tightness in the center of my chest now.

Carol1641
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/13/2014 12:31 PM (GMT -6)   
I have a hiatal hernia, LPR that went undiagnosed for along time which in turn has caused refractory asthma. There are times I can hardly catch my breath at all. The inhalers do no work for me at all. They have to give me higher does of Prednisone. Still working on a solution. Just reading through all the blogs here to see what has worked for others.

Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 119
   Posted 2/13/2014 2:18 PM (GMT -6)   
Honestly, I think the only solution for this is surgery...either Nissen or Linx. I am trying to complete the testing for the Linx procedure. The only thing I have found to help some is water with a PH 8+ in a nebulizer. I do this treatments lots of times throughout the day and it seems to help some. This is what I am using to hold me off until surgery. If you join the Facebook groups for the Nissen or Linx you will see that there are lots of people who had relief from this after surgery. I don't see any other options for me as I have tried all kinds of diets, supplements and meds with no success.

Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 119
   Posted 2/13/2014 2:18 PM (GMT -6)   
Honestly, I think the only solution for this is surgery...either Nissen or Linx. I am trying to complete the testing for the Linx procedure. The only thing I have found to help some is water with a PH 8+ in a nebulizer. I do this treatments lots of times throughout the day and it seems to help some. This is what I am using to hold me off until surgery. If you join the Facebook groups for the Nissen or Linx you will see that there are lots of people who had relief from this after surgery. I don't see any other options for me as I have tried all kinds of diets, supplements and meds with no success.

elky
New Member


Date Joined Oct 2013
Total Posts : 7
   Posted 7/12/2014 6:29 PM (GMT -6)   
hi,
have not been on this site since 2013. Had many other tests, ent visits and i think it is from acid reflux. still happens if i dont take 60mg of dexilant religously. one person responed about using ph-8 water in a nebulizer. so do i buy ph sticks and add something acidic to my water to do this? someone else metioned a "lung strengthener" called cory---something. what is that?
still on pain meds since major lung surgery 2 1/2 yrs ago. after watching both episodes of "weed" with sanjay gupta i am going to seriously as my pain management doctor to recommend me to a participating doc in new jersey. anything to reduce pain meds and all the side effects.
also read someone else with esophageal spasms say she puts her head in icebox and breathes deeply or stands in front of raging a.c. and it stops. tried today with my ac full on, icy cold and it seemed to stop. it only has come back when i tried to get off ppi=dexilant...so it must be the acid. also had spell of it after i drank espresso, throat closed almost completely. was alone and thought i might die for real.
also feel like friends and family just do not understand what this is like living with chronic pain. you appear totally normal to them. too bad there are not many support groups out there.
day at a time !!!

Linda Sue
Regular Member


Date Joined Mar 2014
Total Posts : 459
   Posted 7/14/2014 3:15 PM (GMT -6)   
elky, I really feel for you! Have you tried to 'wean off' the PPI's to see if those may be causing you more harm than good? There are many threads addressing this topic and I've been suffering horribly on PPI's ever since starting them 2 years ago. Nexium, 40mg twice daily. (I have 3cm hiatal hernia and had my gallbladder out in Dec. 2009).

To make a LONG story short (I have other posts on GERD topics), I consulted a pharmacist to get on a schedule to wean off the Nexium to see how I do without this 'poison'. It will take about 2 months, but I am already feeling better and have hope that my body can heal without PPI's. I'm also eating very healthy and stay away from MOST trigger foods/drink.

Mommanoesbest3391
Regular Member


Date Joined Jun 2014
Total Posts : 64
   Posted 7/14/2014 5:46 PM (GMT -6)   
Hey there:)

Well here is my two cents from my own experience. I was told I had moderate reflux in 2011( chest pains, throat issues ball in my throat thingy etc.), I was put on a PPI right away and if I remember correctly I lost a lot of weight 35pds, couldn't eat straight for a good while. The PPI at the time permitted me to get back on the road and eventually got off it for almost a year without consequence. A pain med recently given to me for back pain flared it up again and was given Nexium this time (previous was Losec) and it made me sicker and giving me wicked stomach cramps. It was good for the reflux but had to stop it due to cramps/side effect . So I am back on Losec again and this time around I'm researching more into what works better, meds or foods and today I'd have to say food versus meds. Anything natural to help when ill I will root for in my book but I highly acknowledge that some meds are lifesavers for many. I'm pushing 40 and no spring chicken anymore and I'm aware things might not function as well as it did. Planning to when stable weaning off the PPI and seeing a nutrionist along with my doc to see what can be done. A great many hugs too all :))
-Take care of your mind and body so that your soul will be tempted to stay-

GERD with laryngoesophagitis
Intercostal Neuralgia 2012
General Anxiety Disorder
Lactose Intolerant


Losec 20mg twice a day (restarted July 2014)
Ativan 1mg since 2011 for body/ GERD spasm and sleep as needed.

elky
New Member


Date Joined Oct 2013
Total Posts : 7
   Posted 7/15/2014 1:13 PM (GMT -6)   
Thanks Momma and Linda Sue for 2 cents.
I also think they are temporary helps intially, but idiot doc keep you on them for years and say it's "okay" and it's not. Most doctors have zero knowledge about nutrition or pharmaceuticals long term effects. I've been on PPI's for almost 3 yrs and I think they also explain why my cholesterol shot up unexplainably and weight gain. You no longer have the ability to correctly break down your food and fats especially.
I have tried cold-turkey but the acid-rebound effect was bad and LPR again and throat closing. i have heard millions in the US are on these in some dose or another from Tums to the big guns...nexium et al. I wonder how many Europeans or Asians take this stuff? Indigestion seems to be just a constant in the maladies of mankind but to this extent ?
Europeans have always taken "digestives"(bitters) and I'm sure the rest of the planet have their natural remedies too.(ginger)
It seems the PPI cure creates major, long-lasting problems. Saw a urologist yesterday who said i now have IC and need to take yet another med !! I know this IC is really being caused by these toxic meds I'm on.
Anyway, I tire myself thinking about how to fix this. I came across a site and a book, but I dont want to name them as I'm in no way promoting them or anyone but the book is (which i might order) by a woman named C. Simone. she addresses IC and things like mucous protecting teas etc. slippery elm, marshmallow and aloe vera as well. which i think might work for the gerd LPR situation as well. so confusing....
Good luck all!!
 
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