LPR - having discomfort on PPIs

Hello!

I lost my voice at a wedding in July(10th) and it did not heal. I went to an ENT at the start of August and he scoped my vocal cords and then gave me some steroids. These did not work and I came back 10 days later. He then scoped again and said they look worse. At which point, I did a ph probe test for 18 hours and he said I have LPR and gave me protonix for a month to aid in healing. He said he didn't want me to take these forever.

This is my 7th day on them and I am having a really tough time. I don't suffer from GERD/heartburn normally, I rarely get heart burn unless I wake up and drink soda right away (I don't drink soda - only water, and about 2 glasses of 1% milk a day). However, with these pills, I feel like my I am constantly having acid bubbling up through my stomach into my throat. And my upper throat is on fire constantly. I never had this before these pills. It is really bad when I drink water between meals. I drink the water and I have to burp right away. The past 6 months my wife said I had really bad acid breath and tonight she smelled my breath and said it smells great! So maybe this is just normal cause here and I am imagining all of this??

The two things that can calm my issue is if I drink some chamalion(that daisy stuff) tea with honey or about 20oz of warm water. They seems to get control of the situation.

I am not sure if this is really what should be happening or anything and I'm looking for some general thoughts here. Has anyone experience this while on PPIs?

I'm also changing my diet(It wasn't bad to begin with: drink mostly water, no soda, no coffee, lots of chicken and fresh vegatables, etc, weigh 135 lbs) and now sleep on a wedge, I'm also trying to bend over less (I never really did before).

If what I am feeling now is how the majority of people do with LPR or GERD, I really feel for you. I don't know how you to do it.

Thanks.

Post Edited (kilosi) : 9/1/2015 5:18:33 PM (GMT-6)

Hello, I so I went to the doctor. He said that these pills cannot cause the issue I am having and the issue is that I just have reflux. I told him I didn't experience this before I was on the pill. I then explained everything I changed and he said it was most likely the wedge causing the issue. He said that other things than acid can reflux like pepsin and so on. As such, we agreed to keep me on the pill but revert my diet changes to 'normal' (except don't eat 3 hours before lying down for sleep) and take my pill right before dinner instead of in the morning. My wife wants me to go see a GI next Tuesday if I am not feeling better.

Hello, here is my entry for today.

I took my pill at 4 PM. I was concerned about this but it seemed to be OK. I did have some discomfort in my throat but it wasn't too bad. I just had some daisy tea. I had my final eater(cinn raisin bagel) at approx 8-9 (eating slowly). At 11:15 PM, I took a Zantec and noticed a little bit of difference by the time I went into bed at midnight. I laid in bed, not using the wedge, for an hour looking at my phone using a special nightmode and screen dimmer as not to bother the eyes.

I went to bed at 1 AM and slept on my left side and I slept great. I woke up this morning had my throat felt a lot lot better, it was maybe at 10-20% irritation. I woke up at 8:30 AM.

I had some instant breakfast (chocolate milk) and an organic granola bar at around 9 AM. As time went on, I started to feel the discomfort build. At this time, it was 10 AM and decided to take my Zantec an hour early. It kinda helped. I also had ginger and daisy tea, it sorta helped. I ate lunch at noon, which consisted of two waffles and then some poppers. I felt OK.

It was at this time, I found this facebook group and started to read things greatly: https://www.facebook.com/refluxhelp

I read quite a bit of that, and then I decided "What the heck, I'll get some alkaline water." So I went to a local nature store and buy 2 20oz Evarmore bottles and started to drink them. I noticed that it really helped. It didn't completely get rid of my issues and they still come back a bit, but it seemed to get them under control. I bought 12 bottles on Amazon.

I took my protonix at 4 PM and then had dinner at around 4:20-5:00(same as yesterday). After dinner, I was hit with some mild/moderate reflux and I did not feel good. I made do with this and sipped some of the alkaline water. This helped a bit, but I didn't really chug the alkaline water because I was low and needed to conserve it.

I had more daisy tea and that really made things better. At 8 PM, I had another snack(tortellini with beef[maybe 8 of them; they were small], and a bowl of corn flakes with 1% milk). I feel alright with this.

I will take my Zantec at 11 PM.

I think right now my issue is pepsin getting into my air ways. This is what I have read on this alkaline water, I do not know if it is true or anything: The alkaline has a high PH and it destroys it on contact outside of your stomach. When this water hits your stomach it does not do anything to the pepsin inside of it. I'll give this a shot.

I also found a few interesting things:
1. Diaphragm breathing can make your LES stronger, supposedly: http://www.everydayhealth.com/gerd/take-a-deep-breath-for-gerd-relief.aspx
2. Pepsin is a known reflux agent and can cause issues and it seems most doctors don't really know/care about treating it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3216344/
(In fact, my ENT said this isn't a concern at all)

I'll update in the future. Thanks for reading and good luck!

I am having major pain in my throat right now and nothing I do is able to fix it. This is really bad and I am not a happy person.

I think, I will go back to the doctor and get off these PPIs. I just can't deal with this pain and constant discomfort.

I had zero issues before these pills - absolutely no pain or discomfort in my entire body. Something isn't right here.

Hi Kilosi,

I posted this link in another thread but thought it relevant to what you are going through:

http://www.voiceinstituteofnewyork.com/silent-laryngopharyngeal-reflux-lpr-an-overview/

There is a natural way to get rid of the pepsin in your esophagus and your stomach and it can take about two weeks to do so. Dr. Jamie Koufman has a very strict 2 week induction diet that is designed to lower the pepsin and then from there she has very specific foods you can eat. Some people see relief as soon as the first month, of course, it may take several months to finally get rid of this.

This is why I'm a big advocate for her book DROPPING ACID. She also goes into the reasons why Proton Pump Inhibitors like Nexium, Protonix, Priolsec, etc. might not be appropriate. I found the articles on her website very eye-opening.

I'm actually going through her induction diet again, though since I have a bad case of erosive esophagitis, I'm going to do it for 3 to 4 weeks.

 

Hello,

I got my RYAN scores from my ph probe test, can anyone explain what they mean?
Upright: 2.12. Normal Value: <9.41
% of Time under Baseline: 0. # of Episodes: 0 Longest Episode: 0m

Supine(lying down): 2.17 Normal Value: <6.80
% of Time under Baseline: 0. # of Episodes: 0 Longest Episode: 0m

On a side note, I had no milk today and no animal protein, I felt good in the morning. I didn't take my pill at 4 PM and I still feel pretty good. I had a granola bar for breakfast, then white bean soup for lunch, then some poppers, and yogurt for afternoon snack, two waffles for dinner, and am currently eating a cinn. raisin bagel for my final snack before bed (lying down at midnight).

Thanks!

Post Edited (kilosi) : 9/3/2015 8:59:37 PM (GMT-6)

kilosi said...
Hey all,

I went to the GI doctor and showed him my LPR tests and he then called the ENT and said that I don't have LPR based on these results.

He said to stop taking these medications so I will. I will go see a completely different ENT. My wife says I may have had an allergic reaction to Protonix.

Did the GI doctor advise you to take smaller doses and gradually wean yourself off of them or did he advise you to go cold turkey?   Some people experience pretty bad rebound reflux when they stop cold turkey. 

It's entirely possible that you might be having a reaction to Protonix.  I had a bad reaction to Prevacid that put me in the hospital, so your wife might be onto something. 

I'm glad you're going to get a second opinion.   Sometimes that's what it takes to obtain the answers you need.  I've gotten a third opinion when it came to my esophagitis because the first two GI doctors weren't treating me properly.

Hello,

It's me again!

So I was doing pretty good but developed a burning in my throat. So I was trying to find out what caused it, but was not successful. Anyways, I went back to the ENT today and explained my story. He discounted almost all of it. He said it was impossible to get an allergic reaction to what I was describing. This is after we told the NP what happened, who in turn, told the doctor in the hallway, the wrong story (Note: The NP was actually writing down the story as we told him and was getting it incorrect.) I had to correct them afterwards. But that didn't do that much good.

Anyways, they sprayed me with the numbing agent at 3:13 or so and it wasn't until around 4:00 before they actually put a scope in me. But the numbing agent wore off and the tube was giving me some major issues and discomfort, but they didn't really care. I even told them the numbing agent wore off. He said my issue is LPR and this is the only cause of my burning throat and told me to take Nexium for 6 to 8 weeks. At least he didn't give me Protonix again, though this may be too close to Protonix and I could have an issue. I tried to tell him I had no throat issues like THIS prior to taking Protonix. I said this twice in a row. There was no response.

This is quite interesting, indeed. My wife, who is a nurse, wants me to take the Nexium. I may give it a shot, since it's only short term.

We are moving to NC and will be by Duke, which I am assuming, may have better doctors present. Does anyone have any recommendations for a really good ENT?

I am not disputing the fact I have LPR. My issue is that I keep running into problems and weird situations with people not going on, what is causing this, or even being forthful in how I can get better. Like, I want to sit down and have a long chat about my life and what I have to do to get better. I want to know if it's my LES, my UES, or something else causing the problem, so we can get a solution. Both ENTs just tell me to take these pills, don't eat X foods from a list, and that's that I'll get better. This is not really what I'm looking for and want more. Maybe I'll get better on Nexium. Maybe I won't.

On a related note, my voice was way better today, so that is good. Also, when I take claratin or benedryl, my throat issues go away 90%. They could not explain this.

This is a really frustrating situation and I am sorry that we all have to go through this.

Hi Kilosi,

Interesting you mention antihistamines. I too suffer from LPR and the last week or so I have had so much fluid build up around my sinuses and chest it feels like I'm constantly choking on water. Long story short I had a visit with my GP, while I was there I asked if there was anything I could take for the mucous and he said antihistamines can help in cases like this, because not only do they dry up the mucous but if taken when areas get irritated by your reflux it can reduce the severity of your bodies response. So maybe thats whats happening with your throat?

I hope you can find some answers soon and get some help, I'm in the same boat at the moment and its hell!

Best wishes

Hi Cagu, Thanks for your thoughtful responses.

I did some basic research on ppis when I first started taking them and started to have some really awful throat pain - which I still have right now. I didn't have any of the traditional signs of LPR: coughing, burning throat, post nasal drip, lump in throat, hoarseness of the voice. This is kinda why I suspect I don't actually have LPR or reflux issues (well previous to taking the ppis). I am very intune with my body and I can really detect when things are out of sync or cause me discomfort. I cannot deal with that long term and work to rectify it right away. Previous to taking my first ppi ever, I literally had zero discomfort in my throat except after using my voice when it was still hoarse from the wedding. My throat would feel fine but if I spoke for awhile, I would get irritation from that. The new ENT doesn't want to listen to this. The old ENT, who originally goofed, actually seemed to get it and said that the best course of action is to just rest my voice. But now I have this throat pain.

The really strange thing is that, for some people, presumably like myself, if I do have the delayed stomach emptying and that if this is infact causing more issues - the doctors think I need more medication. So, I'd take more and then get more issues, just to take more.

This brings me to the important question: how do I convince the doctors to perform some of these tests on me? Such as what tests delayed gastric emptying and the other tests? I will do my research, as well on google, but I thought asking this on the thread would be beneficial to other readers. I will be asking my new ENT to perform these tests or refer me to someone who can.

Hi kilosi, I've been following your posts with interest. I live in the Raleigh area. I'm a new sufferer of GERD/LPR and am also trying to find answers. Feel free to email me at some point as you and your wife move to the area.

(This is a combined post - I did not want to double post)

Alejandra1219 said...
Hi kilosi, I've been following your posts with interest. I live in the Raleigh area. I'm a new sufferer of GERD/LPR and am also trying to find answers. Feel free to email me at some point as you and your wife move to the area.

Hello!

Thanks for reading, I hope it has been helpful in some way, shape or form. I know I am repeating myself a bit, I just can't get over at how strange this disease/condition is and the reaction from doctors, supposedly experts in their field. I have read it isn't their fault but just the way modern medicine currently works. I am not trying to point fingers or make any accusations, I am just trying to find information on this and make sense of things. I am an engineer(software) by trade and have a masters degree in CS, and that means I love to solve problems. This, is a problem I have and I am trying to solve it. When I fix software, I don't patch things up and cover up the problem, I find the root cause (easier said than done in a human body).

Anyways!

I wanted to ask you what ENT/GI doctors you have been seeing? I want to check them out and perhaps see them as well.

CAGU said...
Hi Kilosi

I am not sure how you would convince your doctors to order any of these test since they are in the habit of treating symptoms when it comes to reflux and other digestive issues. However, if your GI doctor refuses to order these test, your primary care physician can order the test for delayed gastric emptying and H. Pylori. The test for food sensitivities would be done by your allergist.

Most GI doctors do not offer the test for Low stomach acid. GI doctors do not believe acid is important in the digestion process. However, your naturopathic physicians know differently. Your naturopathic doctors are much better trained to deal with many digestive issues.

Thank you a lot for this information - it was really useful. I am not totally sure what a naturopathic is just yet, but I'll be hitting up google for more information on that. I do find it strange that the GI doctors don't think acid is important in the digestion process. Seems pretty clear to me - you need a place to break down things into smaller pieces. I'm not a doctor or biologist so I'm just armchairing this haha.



Anyways, today has been a pretty OK day with the back of the throat pain. I haven't had too much of it, and had a bottle of alkaline water in the day. Seemed to help a bit but I ran out and have just been drinking some water. I just wish I knew what was triggering the reflux or the pain in the back of my throat. Like one moment it's there and the next moment it's gone. I don't feel anything shooting up from my stomach.

I have been paying attention to my burping(TBH, ever since I went on the ppis, whenever I drink water, I burp a few moments later, which causes me to think I had reflux come up, and I drink more water, and I get into an endless loop. See below Water Drinking) and can notice it stopping half way up until (I think) it hits my UES and it lingers there until I manually release it with my muscles. I am not sure if things are getting by other than burping, or if the air contained in the burp has the pepsin molecules floating around and they are attaching to my throat tissue.

Which brings me to the next question, if indeed, there was pepsin in my burp air...right now...wouldn't it be in my burp air prior to taking the ppis and if so, why didn't I have issues then?

Water Drinking
SO I get into this loop of drinking water and burping. I think I may be sucking in air when I drink. So I have been putting water in my mouth (a small amount) and then exhaling through my nose and drinking. This helps a lot but there is still a minute in my mouth from the initial intake. I can do this like 4-6 times before I have to burp. I suspect this may be an improvement but need to do more testing.



Oh well, I am going to take 500mg of Tylenol before I go to bed and then drink some chamoline tea with honey in a few minutes and hit up Destiny with my best friend.

Hi Kilosi

I have to correct myself on information I gave you concerning how to test for food sensitivity. A food sensitivity and a food allergy is not the same thing. An allergist can only test for food allergies but not food sensitivities. If you have a food sensitivity (food intolerance), this can cause LPR, burping, bloating.

You will need to keep a journal and write down how you respond after eating certain foods. There is also the process of elimination, where you eliminate certain food items from your diet to see if your symptoms improve. You can always google food sensitivity to get more detailed information on how to do this.

Post Edited (CAGU) : 9/23/2015 9:19:54 PM (GMT-6)