If you have LPR you ABSOLUTELY NEED to Read this

NOTE: If you experience frequent heartburn then the following post will most likely be irrelevant to you.


Hey there guys...

For those of you who aren't familiar with me, I have had LPR for 3 years and was strongly considering getting the Nissen done. Well now, thanks to a visit to the doctor's office.......I don't have LPR anymore. You read that correctly.


I went to a GI Doctor at a university who my ENT referred me to to get the Nissen. I walked in and he asked me my symptoms and what drugs I had been on. He then proceeded to tell me that it was basically impossible for a fit, healthy 20 year old male to still have significant reflux after I had tried all 4 PPI's and made lifestyle changes. I got so angry I almost walked out of the room but my father calmed me down a bit.
He then went on to say that the GI community is in a kind of tussle with the ENT community in that whenever people come in to ENT appointments with Globus, Burning, and Post-Nasal Drip they automatically diagnose them with LPR and send them on their way. He said that he has seen hundreds of LPR patients go through with the Nissen and for a significant portion of those patients the surgery helps only about 20%. He said that the GI community believes there is a disorder with a large percentage of LPR patients of some nerves that have been damaged from some event (virus, particularly sudden onset cases) in which they become "hypersensitized." He went on to say that he has seen great success with about 50% of LPR patients who take an anti-depressant called Elavil that "balances" out the nerve.



I am going to interrupt my story to add some information I have garnered in the past week on my research from this "hypersensitivity." :

When damage happens to your throat, or anywhere on the body, your nerves become hypersensitized so it becomes painful. For example, your knee would hurt unbelievably if you tore your ACL, so you wouldn't attempt to run (common sense). 99.99% of the time, the nerves heal from this "hypersensitized" state once the physical damage is fully healed. In a large amount of these LPR patients, the physical damage (from a virus, infection, screaming like hell etc) heals normally but the nerve does NOT. It stays in this hypersensitized state, thus being irritated horribly by normal, incredibly tiny amounts of acid. An ENT research paper I came across compared it to getting a 3rd degree burn on your arm, healing perfectly, but still having incredible pain to the touch after it heals.
This research made immediate sense to me because I only really had super-intense burning and a lump on ONE side of my throat. Now if abnormal and damaging amounts of acid were actually coming up, wouldn't you think it would irritate both sides? Also, if any damage was actually happening to my larynx, then why was I able to sing and use my voice perfectly on stage.....but be hoarse off of it? Because NO ACTUAL DAMAGE had happened from LPR, but my nerve cells put me in so much pain all of the time that I thought I was hoarse unless I absolutely had to use my voice......are you following me?



So anyways, I have been on Elavil (25 mg) for 6 days and 90% of my burping and reflux is gone and my throat is healing at an amazing rate and I am probably a couple of months from being 100% normal again.




I know this post is all over the place and disorganized so let me get some quick thoughts in I missed:

1. If you have never had an incident of throat reflux while asleep, and always had your throat feel good after awaking, this post is probably particularly important to you. Because if your sphincters were actually bad, then you would most likely have frequent horrible nighttime reflux.

2. To Clarify: I was experiencing Acid Reflux and that IS what was doing the damage. But I do not believe I have abnormal amounts of acid, it just felt like I did. The PPIs DID help, they just only helped 60%.


3. If you want to research this yourself, search "Laryngeal Sensory Neuropathy" or "irritable Larynx syndrome" or "laryngeal hypersensitivity"

4. LPR specialist Jamie Koufman is reportedly increasingly treating SOME of her patients with Elavil and other nervous system drugs.

TO CLARIFY: LPR is a legitimate diagnosis for a good amount of patients, but some have this "hypersensitivity" and do not have abnormal LPR.

5. If someone wants to sticky this after a while if this ends up helping people, then please feel free to do so.

Post Edited (Jacket923) : 10/6/2011 7:53:39 PM (GMT-6)

I was about to go through the tests but he wanted me to try the medication first since the Doctor had said he had seen success in a good amount of patients. I have never in my life had any health problems besides this, no anxiety or depression or anything like that. The Elavil supposedly "calms" the nerve down and allows it to heal. Its been exactly a week now and I haven't experienced any reflux or a feeling that vaporized gastric contents are coming up into my throat. I literally feel 95% normal after I eat, I only get a tiny bit of that acid feeling on the right side of my throat, which supposedly will go away more and more after the nerve heals.

Obviously, a lot of you do have abnormal LPR levels, I would have sworn I did before I went on this medication. But if you are considering surgery, how much trouble is it for you to try a week of this medication before you go on with it? You could be one of these patients, you never know.

This information is terribly confusing to me. I've been on 20 mg Elavil (tricyclic) for almost 30 years and I have terrible GERD/AR. At the moment my throat is on fire, especially on the left side.

I researched the meds I'm on and Elavil is suppose to be one that can cause or increase the severity of GERD/AR. I plan on discussing this with my primary card physician Monday.

Day before yesterday I started cutting back on my Elavil dosage 1/4 by splitting a 10 mg pill. I'll try this for a couple of weeks before cutting more. If my depression slaps me upside the head, I'll be back on my full dose immediately!

I absolutely don't know what to say, pro or con but I do know Elavil has not helped me and I can't know for sure if it causes or contributes to my GERD/AR.

I pray it helps those of you who try it.

God bless,
Cme

Hi Jacket,

I read your post and I will be asking my gastro doc about the possibility of taking Elavil experimentally. My symptoms don't make a lot of sense and the doc has kind of made me feel like it's "all in my head". I started out with a bad case of gastritis, which was present for 4 days. On the morning of the fifth day, I awoke with horrible reflux. Until that day I had had heartburn MAYBE TWICE in my whole life (I'm 29). I took Prilosec for 8 weeks and most all symptoms went away except for the left-sided throat burn, acid vapor feeling, cough, and mucus / post-nasal drip. Since the end of the 8 weeks on PPI's, I have had these symptoms intermittently. Strangely, they'll disappear for 2 weeks, then reappear insidiously for 2 weeks WITHOUT the addition of any trigger foods or any new foods for that matter. I, like you, do NOT reflux at night. It's only during the day. That's why the doc told me to see an ENT but I just KNOW my issues aren't ent-type issues. My sensations are mainly on the left side of my throat, which has never made sense to me and doctor has been unable to issue any explanations for this. He did say that the nerve endings on the larynx are very sensitive and take longer to heal. He recommended a MINIMUM of 3 months on Nexium to calm the nerves down but it sounds like this may or may not work. Do you have the links to this Elavil research? If so, please post it. I'm very glad to hear you have received such great relief of symptoms with this approach. I am interested to hear how it works out for you long term. Another odd thing for me is peppermint, chocolate, onions, garlic, spicy food, and green tea do NOT cause symptoms for me and these are supposed to be triggers for GERD.

Take care,
Liz

And let me just reiterate: If you experience frequent heartburn then this is probably completely irrelevant to you because that is evidence that you actually have high abnormal amounts of reflux. But in people with LPR who never (or rarely), experience heartburn, then I believe this MAY be able to help you.

Hi Jacket,

I've been having acid reflux for almost 4 months, when I research in the internet, I came across information about GERD most frequently, this is the first time I saw information about LPR, and it's similar to my symptom!

I started with frequent heartburn since May, I've visited 2 GP and taken medicine for about 2 months, my heartburn is gone but I still have tight throat and regurgitation intermittently, one of my doc thinks it's my emotion (I'm having some mild depression), she wants to prescribe tranquilizer to me but I request her to refer me to a gastro doc as I want to do an endoscopy.

I went for the endoscopy in Jul, the result is fine, I follow the medication from the gastro doc for another 2 weeks but I'm still having the symptom intermittently. Sadly the doc just gave me a bagful of medicine and tell me not to make the next appointment.

I don't have night time reflux for almost 3 month, just regurgitation and it happens on and off, one a while it'll turn quite bad I'll feel nausea or burning near my duodenum

Sometimes right after eating, I can feel the food sticking on my throat, and feel like my saliva is going up to my nose, water is my remedy, I'll have to drink a lot of it, and it will 'wash' down the food, then I'll start burping and the food start going down. I don't have the burning feel in my throat, just feeling tight and dry throat sometime, and funny feeling behind my nose.

I'm not sure whether I'm having GERD or LPR, but thanks for your info, I'll read more on LPR and Elavil

This is my first post, I'm so glad to find this forum, knowing that there are ppl out there who can understand my suffering!

Jacket,

I actually took Amytrpline for months, I dont have major heartburn, I am on the low end. Actually my gastro dr. a few years back prescribe this for my heartburn/gerd( I call it LPR or GERD the same for me, i dont get heartburn that much, just sore throat.... but it didnt really help. I remember taking this small blue pill. I took it at night and never really helped. I think my gastro intentions and medicines were good but he was never able to help me.

But it might work for you, which is good but it is a treatment I suppose since I tried it for my LPR

Yes I've tried all of them and more. Yes they do help. I have the EGDs to prove it. A marked difference from what I eat. I eat very clean. Nothing processed lots of raw green vegetables with EVERY meal and sleep elevated. I'm not cured I have a hiatal hernia so my les will not close, but it is amazing how eating clean effects the severity of the acid burn. It's worth it. Oh yes, probiotics help a lo too. Good luck

Jacket, thank you so much for this information. I think there is still a lot to learn about LPR.

I believe this 100% applies to me.

I kissed a woman 5 years ago, and I got a sore throat the next day.

It has never gone away.

Diagnosed with LPR. I did have stomach problems for about 8 months that had ended 3 months before the incident.

However, I can eat the greasiest pepperoni pizza and get zero heartburn. It just does not add up that I am having any sort of reflux.

I need to get on Elavil.

Somebody said...
1. If you have never had an incident of throat reflux while asleep, and always had your throat feel good after awaking, this post is probably particularly important to you. Because if your sphincters were actually bad, then you would most likely have frequent horrible nighttime reflux.

100% me.

Never have a problem at night Morning is my best time. I feel almost 100%. Then the cycle of discomfort begins like clockwork as soon as I get up around 8:00 AM. I am not sure why this is.

Post Edited (kevinla) : 11/8/2011 1:42:06 AM (GMT-7)

This is very interesting reading and I too would like to hear back from Jacket about how he did/is doing on Elavil. My surgeon actually suggested it and we gave it the good old college try but couldn't handle the stimulant effects of the drug.

Assuming that you can't have LPR and GERD at the same time might be a mistake according to what my surgeon told hubby and me. I have had NF surgery to control/improve GERD and I believe it did what it was supposed to do.

It just appears that I may have had LPR or similar symptoms such as the hypersensitive esophagus even before my surgery when GERD was still so bad.

I'm undergoing a further "surgical" procedure as an out-patient at the hospital this coming Friday to dilate/stretch the surgery site which hopefully will allow some of the other problems I'm experiencing to be put more into perspective but I did want to comment that this approach to controlling the symptoms described above makes some good sense as per my local surgeon.

Someone let me know if they hear from Jacket again.
I'd like to know how he's doing . . .

I don't have heartburn:
my primary said I had GERD and gastritis
the GI doc said I have Barrett's esophagitis
my ENT said I had LPR

so I agree, you CAN have GERD and LPR, I believe I do.

BUT
doesn't it take actual high stomach acid to cause the gastritis and Barrett's?

I have had symptoms of LPR off and on for ten years. I have always been very healthy, exercised, maintained a stable weight and would consider myself somewhat of a health nut. My LPR came on suddenly one night while I was at a Halloween party where it was very noisy and I had to speak very loudly to be heard. I noticed a lot of fatigue in my voice when I got home. (I had three weeks prior been bitten by a dog in the leg and was given an antibiotic and a tetnus shot, so I don't know if this may be somehow related as far as a side affects from these or something that would have affected a nerve) I was also a teacher at the time and had to speak for long periods every day and by the end of the day, my voice was absolutely shot. It was so sore that every day was miserable fo rme to go to work. My voice, however, was never raspy or hoarse, just a sore, overfatigued feeling like a sore muscle or something. I always felt better after a night of rest.

I went to the ENT and he prescribed a PPI. I thought it odd because I have never felt any kind of reflux and have never tasted a thing in my mouth, and the dentist always says my teeth look fine. I took it for a few months but noticed no improvement so I quit taking it. My throat often felt raw, but would feel better each morning that I got up. This went on for about 9 months and slowly improved to the point that as long as I didn't talk too much, I could make it through the day without thinking about it. I had to quit my job as a teacher because my voice could not handle it. I was largely symptom free for about four years after that. Then one day, I swallowed a large vitamin pill that got slightly lodged in my throat. I drank a ton of water to wash it down, but that is when the next bout of this crap started. My throat got irritated from that pill. Symptoms were a bit different and I had more of a raw, irritated feeling in my throat. I never have reflux issues at night and I find the mornings are generally good but the irritation always starts around 10:00 a.m. and will last through the evening starting to feel better around 8:00 at night. This bout lasted about 6 months and improved.

Most recently, I have noticed another bout of this which came on when I drank a very hot cup of coffee on an airplane and burned my throat. This was three weeks ago and now I am back with all of these symptoms again. Throat pain moves from one side of the throat to the other. Sometimes I will feel it in my tonsil area. My voice gets easily fatigued but I always feel good in the morning. The one thing that I have found that helps immensely is if I chew gum. I actually hate chewing gum, but I have found that I can be nearly symptom free the entire day as long as I have a piece of gum in my mouth. I am assuming that it is perhaps the salvia being produced has a slightly different PH that might be keeping my throat from being irritated. Has anybody else noticed such an improvement from just chewing gum? I went from complete misery three days ago to feeling practically normal by chewing gum. I am hoping that if this is being caused by some kind of nerve irritiation, I can calm the nerve down with continued gum chewing for a few weeks and maybe get better. This is a very frustrating thing to have and I have found that no food combintations make any difference. The one thing I do notice is that carbonated drinks are absolutely horribly irritating to my throat tissue, so I avoid them. Vinegar can also be an irritant. Anybody else experience these types of symptoms? The nerve explanation does make some sense after thinking about my symptoms. I really feel for everybody out there with the various symptoms from this condition. It is very anxiety provoking as well wondering what in the heck is going on in your body. I have been a nervous wreck worrying about it at times, which I am sure only makes things worse.