LPR / laryngopharyngeal reflux TURNED OUT TO BE HYPERSENSITIVITY - AMITRIPTYLINE/ELAVIL

I was misdiagnosed with LPR by an ENT (ear,nose,throat). I was in so much pain for almost two years. My throat pain was worse on proton pump inhibitors(PPI). I was given every antacid out there. My symptoms started after a respiratory problem.
I tried everything from change of diet to gaviscon Advance and every PPI and antacids, nothing worked, in fact my symptoms got worse on these. After almost a year my doctor decided to do nissen fundoplication operation, I had endoscopy and ph test, where tubes were put up my nose, down my throat to see how much acid came up. Surprising the PH test showed very little acid coming up and my nissen fundoplication was cancelled. At this point I had seen lots of different doctors, from ENTs to Gastroenterology, and I was so fed up with the depleting throat pain. Eventually one different doctor suggested I take Amitriptyline/Elavil, I started with 10mg first week before sleeping at night, then another 10mg second week and another 10mg third week.
Dosage:
WEEK 1= 10mg
WEEK 2 = 20mg
WEEK 3= 30mg
The results were phenomenal, My pain gradually decrease and I continued taking the medicine (Amitriptyline/Elavil) which led to further pain improvement. The problem was hypersensitive nerve not LPR, I strongly believe my symptoms started after some sort of respiratory problem which I suffered two weeks before my symptoms started.
I would recommend this treatment, especially if your symptoms started after respiratory problem,and PPI, Gaviscon and antacids not working for you, you may be suffering from hypersensitive nerve and not reflux/gerd/laryngopharyngeal reflux as the symptoms are very similar.

Post Edited (mush123) : 1/13/2019 2:55:02 PM (GMT-7)

Hi Mush,

Was it constant throat pain? My throat pain only appears after I eat something. Is that a way to rule out if you have hypersensitivity or actual LPR?

Can you say you are pain free now and is cured?

Thanks Denise!

So I was lucky enough to have an ent also come to this conclusion so today’s my first night in amytriptiline I’m super hopeful I get some relief. Can I ask how you’re doing now? Appreciate any input on your recovery it’s been a long year of discomfort so hopeful this will help me heal from this. Mine also started after a nasty virus.

Hey all-
This has been an inspiring thread, so I thought I would weigh post and keep up with everyone's path, while sharing mine.

The skinny:
-Onset LPR/PVVN symptoms after bad, bad URI in Feb.2020 (Covid? Who knows. No testing then.)

-In 10 months: 2 G.P.s, 2 Urgent Care Clinic N.P.s, 1 ENT, 1 Allergy Doc, 1 G.I. ARNP. All have chased after respiratory and restrictive airway diagnosis, but nothing has worked in that realm and all blood work, x-rays and PFTs look good.

-Currently trying to ween off of 5 months on PPIs, as I have tried 3 different at various doses, with limited results. Im currently only on about 7mg of Prilosec a day.

- Currently on 40mg a day of H2 (Famotidine)

-Finally got an LPR diagnosis from a Clinic N.P. for my record, and current G.P. is leaving door open to LPR, with diagnosing me with Globus. Mostly, I am self-diagnosed by elimination.

-Currently starting another round of low-acid diet, and maybe another round of no caffeine/coffee, this time for at least a month. Last time was about 16 days.

So, on to the talk about tricyclics, specifically Elavil and Gabapentin.

I started big with 10mg of Elavil and 300mg of Gabapentin and it knocked me on my butt. Simply could not function from the drowsiness. Knocked it back to 100mg daily of Gabapentin, but eventually cut it out all together (as request by my G.P.) and focusing on Elavil first.

So currently, Ive been on Elavil 10mg for about 2 weeks and not noticing a ton of difference. My chronic throat clear seems to maybe be a bit less severe, but minimal change.

After reading this thread, I think its possible I am going too slow. It seems that there are some success stories with 20 and 30mg daily.

How about Gabapentin in conjunction? And has anyone found a remedy for the drowsiness and dry mouth?

@SharonZ

Thanks Sharon. Yeah, I suspected as much, and yes, I'm getting a little impatient at times, as I have been dealing with this for 10 months and getting nowhere within my small towns medical community. I'm lucky if I find a doctor that has heard of LPR and/or Esophageal Dysfunction, let alone how to treat and test for it. I'm in no man's land out here.

I have been lucky enough to finally be reccomended a g.p. in town that is super humble and helpful and is allowing me to sort of "steer the ship". This in itself, can be tough, as there isnt a professional moving things forward.

Our last virtual visit had him agreeing with 10mg of Amitryptaline to start and to bump it up by 5mg in 2 week periods. I am at 15mg daily now, patiently waiting. It seems to have had some effect on my chronic throat clearing, but seemingly to detriment of increased globus at night and morning, that has become more GERD-like in nature. Still no heartburn or stomach discomfort ever.

The impatience tends to be from my general anxiety disorder it has triggered and the unfortunate fact that I am experiencing the main side effects regularly: drowsiness (after I awaken and throughout the day) and really bad dry mouth.

I would love to hear how marlaf and Ambiggs are fairing if still active.

Thanks all!

Adirrr said...
Hey mush123 I am happy that you are finally ok! I apparently have this problem too. I’ve suffering the last 8 month and after doing 2 endoscopy, ph monitoring and esophagus manometry, all came out normal. I’ve been trying every medication such as PPIs, licorice, alovera, motilium, nothing seems to help. I’ve been suffering from sore throat/mouth, lump in throat, feeling like a liquid in the back of my throat, SOB, bloating, and burping. After reading some stuff here I guess that I have hypersensitivity. If anyone here read this and can contact me on [email protected] that would great i am trying to find a way to get back to my life already after 8 months of hell. Thanks!

Hi. Have you been tested for Eosinophilic Esophagitis (EoE)? I was in a similar GERD/LPR world, getting better and relapsing. After a food impaction, a subsequent scope/biopsy turned up EoE. Here's an article you might find helpful in case you ever ask your doctor about EoE. Cheers.

https://aacijournal.biomedcentral.com/articles/10.1186/s13223-019-0336-3

Adirrr said...
Yes I have. I did everything all came up normal. My doctor proscribed me deprexan (tricyiclic) 4 days ago. I really hope it’s going to help since after trying everything it seems like the last option so fingers crossed! Thanks for the response!

Fantastic news that it's not EoE. I'm struggling with a relapse of this at the moment.

Sending best thoughts that the new meds will eventually work for you. Don't give up searching for the answer(s) to your issue. Cheers.

Dee:

Anxiety, in addition to GERD, can cause the globus sensation. You can always try O-T-C pepcid at bedtime to try and control the GERD symptoms. Also, when weaning off of PPIs you can get something called rebound acid. The dry mouth is more than likely from the Amtryptiline.

Sharon

I also wonder, I am waking up every morning the last 3 weeks with shortness of breath even if I ate 4 hours before going to sleep, can it be related to anxiety? Which I don’t really feel anxious but maybe as a result of overthinking about it that happens?

This Hypersensitivity conversation has flagged my interest based on my experience. I wanted to share my story in hopes that maybe we can mutually help one another at some point as I have not seen a lot stories that start with a potential virus. I have never had digestive issues, reflux, heartburn or anything like LPR my entire 47 years of life and frankly could eat pretty much anything without issue. I caught COVID 12.14.20 and it was mild. 10 days in I started having weird nerve sensations in my calves. after a week or so it expanded into behind my thighs eventually manifesting in soreness along my sciatic nerve. This expanded into the nerve paths in my arms, shoulder and neck over 6-10 weeks. My nerve paths were sore in in all these areas and my muscles would feel tight and sore non-stop. I had sciatica & piriformis syndrome like symptoms and after 6 weeks my hands started going numb like carpal tunnel syndrome. My PCP mentioned Guillain-Barré syndrome as a possibility, it was constant chronic pain and I was popping NSAID's like candy - I currently believe it was just Long Covid attacking my nervous system. I don't know if you recall that hard freeze we had in February 2021 that messed things up in southern states like Texas? Right at the end of that cold snap I woke up suddenly in the middle of the night and my throat was tight (globus like), mouth and throat super dry and I felt it hard to breath even though I don't think my throat was really closing (it just felt that way). This began a 6 week stretch of severe dry mouth and throat – I thought I was severely dehydrated at first. I believe the virus was stifling more of my system and I felt my saliva production went to <50%. Nothing helped and I wasn't sleeping but in 5 minute increments while upright during this time, I thought I was going to go mad. PCP treated me for a bacterial infection (guessing) with an aggressive 10 day round of Augmentin Antibiotic that tore my stomach up. Half way through when it was found this did nothing they put me on a 5 day round of Prednisone (thinking it was allergy related) which helped me breath but lit me completely on fire. My throat and ears went up in flames with in the first 6 hours and it stayed in some form for about 8 weeks into April. Through time and help from a Chiropractor my nerve, muscle and saliva issues gradually baselined to normal but my Throat and Ear issues persisted after the Prednisone event. After no help from PCP's I finally went to an ENT who after an endoscope diagnosed me with LPR based on inflammation in my Esophagus and Larynx areas. He explained nothing to me about what LPR was or the Pantoprazole 40 MG twice a day he prescribed me. I asked if he saw anything in there that concerned him and he said "No" so I asked why are my throat and ears on fire and he just said "Acid!" and said he could give me an antacid. I was desperate so I thought I would do my best to follow his direction even though I felt completely dismissed. The PPI seemed to help some in the first 2 weeks but did not seem to do much after that and started to make things worse. 3 weeks in, I developed legit aggressive heartburn for the first time in my life and shortly after that I had actual nocturnal reflux all the way to my teeth 3 nights in a row for the first time ever. I went back and forth with ENT who was not helpful over how to handle PPI's. I feel there is a much greater responsibility on the doctors to educate on these types of drugs when prescribing. I learned the things you have the same way many of you have, on my own. After zero help and no results. I decided to taper myself after the 10th week. I tried to use Pepcid as a buffer while I alternated days to taper but found Pepcid gave me horrible side effects. Short version is I eventually got completely off of the Pantoprazole but I went too fast and gave myself gastritis from the Acid Rebound. I used a low acid diet, alkaline water and followed all the typical reflux rules and by late June I was completely off the PPI and I felt that every week my Throat and Ear (LPR) symptoms would slightly improve. It seemed the farther I got from the PPI the better I got except my stomach that was being damaged by the rebound. Once I got into July I felt my LPR symptoms were largely under control using the same techniques but I was developing regular mild heart burn and it seemed that I increasingly struggled with heavier meals (meat) causing a burning in my stomach and gut (I learned it was gastritis later). After being off the PPI for 12 weeks but having heartburn/mild random stomach burning, My new PCP thought I should get an EGD. Other than the mild heartburn and (mild gastritis) I felt like I was finally healing “LPR”. I was crushed when my scope showed that I had a small section of Barrett's Esophagus because the last thing I wanted to do was go back on a PPI. They also found mild gastritis at the entrance and exit of my stomach. Praise God the Barrett's was not pre-cancer and no bacterial influence was found. I started 20 Mg. Rabeprazole 9.14.21 and have been on it until today. This initially helped the gastritis and eliminated the heartburn. I have been on this lower dose PPI for 4 months now and I don't like it but I can honestly say I have felt gradual improvement every week on all fronts. However as much as I can't say this drug does nothing for me, I feel like I was already on this healing path regarding the LPR and I wonder if I had not messed myself up with gastritis coming off the PPI if I wouldn't be in a much better place by now. I struggle to feel that time is healing me more than any drug I'm taking. I have felt that my issues stem from COVID attacking my nervous system, I figure if it attacked all the nerves in my limbs moving up my body from legs to shoulders, why would it stop when it gets to the nerves that impact the digestive tract. I have often wondered if many of the sensations I have felt with this were related to nerve damage/irritation, so this hypersensitivity discussion seems worth a deeper look. I feel like the secondary triggers that have caused me problems are drug induced (NSAID, Prednisone, PPI, ect.) or from the impact of bad tapering from certain drugs. I think the Gastritis was my fault but a lot of this seems to tie back to COVID and my hope is that time will continue to heal as it seems to be. If you feel you have a similar story or felt your LPR/Digestive issues started with COVID or a Virus, I would be interested to know of your journey. As I sit here 1.18.22, I feel my LPR symptoms are largely absent, I would probably score a 1 or 2 on the RSI most days and some days 1 or 0. I still practice a limited low acid diet as I am trying to give my stomach more time to recover fully from gastritis. I am just now slowly trying to reconstruct my diet to add in more normal things. Beyond that, knowing I have Barrett’s that keeps me on a PPI I don’t want to be on is my biggest struggle. Hopefully something in there is useful to someone. I pray for you all that you will find wholeness and relief.