LPR as something else, falsely being treated as acid reflux? Probably...

  • Thread starter Thread starter Seeking Sunrise
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I agree with you there. I simply do not worry about tiny risks of cancer.

Worry about lung cancer from smoking. Worry about skin cancer from frequent or severe sunburns. Worry about cancer from working around radioactive material without safety precautions. Those are risk factors which are preventable and reasonably large.

Do not worry about cancer from one arm x-ray, or from reflux. Treat the reflux based on your suffering now, not on some .0001 chance of cancer years from now. (No, I didn't make that nuraber up, that's the actual statistic for the risk of esophageal cancer from chronic reflux.)
 
Seeking Sunrise,

Yes, I agree. I still have the urge to do some minor throat clearing, particularly after meals. However, I've become resistant to the urge, as that can further aggravate the throat and the nerves therein. I, too, wonder if I should add 10 mg of elavil or some other tricyclic antidepressant to my regimen. I'll discuss that with my doctor next month. I may even increase the dosage of Lyrica. Some LSN patients need 75 mg three times a day, and others need 150 mg twice a day. But I think that may be overdoing it in my case.

I'm somewhat anxious to get off of the PPI's but I'd need to taper them down slowly, over the course of a few weeks. Another interesting fact is that PPI's can prevent the absorption of Vitamin B-12, which is essential for NERVE REPAIR. Thus, taking too many for too long a time can reduce the capacity of the nervous system to repair itself.

Thank you for keeping us all updated.
 
Well the first ( and i think maybe the most important thing ) doctors told me ... is that even the smallest thing in mouth , throat or near this area can cause enormous problems and feeling of something "big" in your mouth...
and they think everything will be totally normal after surgery (they said it is very similar to tonsils removal surgery) ... I will update U regularly and if they tell me something new I ll pass it on ... I ll have my preparation for surgery on 30. Deceraber :D lol and surgery will be on 3 January... :)

by the way I am feeling a bit better last few days, still I can feel it in my throat and am still afraid of smoking and eating many things ... :)
 
I've been on Lyrica for three weeks now and I think I feel a little better than my last post. Lyrica seems to be controlling my symptoms better than anything else I've tried in the last 11 months. My throat doesn't burn very much anymore and it is easier to use my voice. Throat clearing is no longer an issue and I no longer have the sensation of anything thick stuck in my throat. However, as I mentioned, the medicine seems to make me drier than I should be and I still have the sensation of tiny pins scratching against my larynx, mostly in the center in specific areas. While this sensation is preferable to the widespread burning I endured when my symptoms were at their worst, I hope that it resolves eventually.

When I see my doctor next week, I'm going to ask if I can add 10 mg of elavil or some other form of amitryptiline (spelling?) to my regimen.
 
@neptunian ...no they didnt... they looked at my throat only with their eye and laryngeal mirror deep down ( that is how they find that thing on my epiglottis )..
that was the only thing ...and they didnt mention LPR i wonder if they thought about it ...
surgeon said that smoking or alcohol can irritate it when they came in touch with it he didnt said anything about my diet or mention acid reflux at all ... :(
 
Oh, there's loaRAB of evidence that PPIs don't help people who don't have heartburn, even when there's laboratory evidence that they have reflux. There are also studies that show the reverse.

Matter of fact, I've found I reflux much less when I'm off the acid medicines. My actual stomach burns like hot coals, but there's a lot less acid in my mouth. And gabapentin can treat many things other than neuropathic pain. Maybe it's just simply relieving pain. Maybe it's actually helping the esophagus work properly. The side effects of gabapentin or pregbalin are no laughing matter, however. They include drowsiness, dizziness and sometimes severe weight gain.

Still, it's worth a try.
 
For the people who are on PPI's and have mucus/throat clearing problems have you gone for a manometry? If no,t how do you know if your LES and UES are working properly? As I mentioned earlier in this thread my LES was working properly and only slightly relaxed but had a screwy UES. I had severe mucus in my throat which was only eliminated by ppis along with low fat low acid diet and avoiding all food that would loosen LES and sleeping on an incline. If your mucus is caused by acid or pepsin you will never get rid of it without avoiding high acid fooRAB. I am living proof of that.


The point I am making is people like us have complex problems. Doctors treat us for one thing but not multiple causing our frustration of not being cured of all our symptoms. We may have a nerve issues + LPR + motility ..... My LPR/GERD was probably resulted in damaging my vagus nerve which in turn gave me a motility issue. But lets just say I refluxed twice a week into my throat. Thats all it could take to prevent my nerves to heal or better yet over time continue to be damaged. So in turn I may have just had reflux and now I have LPR, vagus nerve damage and a motility problem. Symptoms manifest and things getting really complex to properly diagnose.

Dont stop one drug unless youve taken tests to properly diagnose what the root causes are.
 
What a load of rubbish . Just another drug company trying to push something new and expensive on those suffering.

You shouldn't reference papers that others then have to pay a huge amount to read to follow up on the research you have quoted. If you were genuine you would have included quotes from these papers rather than trying to con us.

Lyrica is made by Pfizer and I bet Sun Seeker works for them.

Evidence or STFU!
 
I see the point you are making, but your scenario seems to be lacking something. If you have a doctor that jumps to such treatment immediately, I'd be finding another doctor. High-dose PPI's should never be the first approach to treatment.

I do have LPR and GERD. I wouldn't be surprised if I had the nerve irritation at times as well. The thing is, I have worked with my PCP and 3 specialists over the years. (ENT, Pulmonologist and Gastroenterologist) In all cases, the doctors worked with me first on lifestyle changes. When the medications were introduced, they were introduced at the lowest levels first. I worked my way up to PPI's. I initially took low dosages. I continued to try various approaches before I started on PPI's twice per day. While trying the meRAB, I was encouraged to continue my lifestyle changes as well. The doctors didn't just prescribe the PPI's twice per day. I had multiple tests that were repeated over time to confirm reflux and see how the treatments were working. Granted, I did end up on high-dose PPI's and it is long-term, but it was with careful deliberation on my part and the part of multiple doctors. While I'm not comfortable with the long-term risks, the benefits far outweigh those risks in my case. (My reflux is literally life-threatening because the acid inflames my lungs at times and I can't breathe.)

As for throat irritation, my ENT did a couple tests (not just a look at the throat). He gave me breathing exercises and holistic things to try. He did want me to try the low dose anti-depressants, but even at the lowest dose, they really knock me out. His goal is to help me "calm" my vocal corRAB down.

I think it is a good thing you have done your research. More people really should. I think that is why many of us are on these boarRAB. I do worry that you are advocating something that might only apply to some and not all. Some of us truly do have confirmed severe acid reflux. (My testing has confirmed I have acid in the gaseous form coming up into my throat during the majority of the day.) What you are sharing is certainly something we can bring to discuss with our doctors, but I caution people to look at all options in deciding upon their personal course of treatment.
 
LSN is diagnosed, according to David Sychamore's important article in october 2008 ENT Today:

Mainly by patient history. If the patient can remeraber the acute onset of the symptoms (chronic cough/globus/throat clearing/odynopagia), then chances are you are dealing with LSN.

There are also physical searches and something to do with electrical stimulation of the larynx. With that, they can sense nurabness or paralysis of the different parts of the larynx, like the vocal folRAB.
 
Very interesting. I'll be in touch with you. You've gone through a lot but I find it interesting that a fold was drooping. Vocal fold paresis is the classic proof of laryngeal motor neuropathy.

I'm glad you are on elavil. It's no surprise at all that it's helped you. Add lyrica, my friend. It is strange to think, but I believe that those type of drugs will stop this much better than any ppi, even if there were a stomach component.
 
Hi,

I've been taking Lyrica for two weeks now and I firmly believe that it is helping to alleviate the throat problems I've had since last February. My problems began with a severe cold that originated in my larynx and spread to my sinus. In fact, I suffered two colRAB like this within a three-week period, and then suffered a third last October. I was starting to feel better at the end of Septeraber until I caught that third cold. At the time, I'd been using prescription strength Prilosec for almost two months. Due to the fact that my symptoms began with viral infections and were aggravated by recurring infections, I began to suspect nerve-damage. Thus, I asked my doctor if I could try Lyrica. She suggested that Neuropathic Pain could take several months to heal properly. Thus, it is still a bit too early for me to expect any sort of full recovery. My most persistent problems have been the following:

(1) Excessive throat-clearing (but this has not been a problem over the last month).

(2) Hoarseness and vocal fatigue

(3) Painful Speaking (Odynophonia)

(4) Globus Sensation

(5) Burning sensation in the voicebox

Furthermore, after I caught my second cold in February, I had the worst cough I ever experienced in my life. It lasted about three weeks. But for the last four months, I haven't coughed much at all. While I was sick in October I experienced some mild coughing in the morning, and this symptom did not subside for about two weeks. After three weeks of incessant throat-clearing, I began to feel better during the first week of Noveraber. However, when I took an enzyme supplement called Clear-Ease I experienced severe burning in my Larynx which lasted about three weeks. I hadn't quite felt the same since taking this supplement, which must have caused further nerve damage. However, the Lyrica definitely seems to be helping me in several ways, although I have experienced some deleterious side-effects. I've compiled a list of the positive and negative side-effects:

Postive:

(1) Virtually eliminated the burning sensation in my larynx (one day, it seemed to give almost instant relief of this symptom; I haven't experienced this symptom for 10 days).

(2) Greatly reduced my globus sensation.

(3) Greatly reduced my odynophonia (Pain upon using the voice; I had it in both my upper and lower larynx).

(4) It seems to enhance my mood for the better. I'm somewhat happier since taking it.

Negative:

(1) Mild headaches.

(2) I still have a sharp, mild pinching sensation in my larynx that comes and goes, almost as though there are some tiny pins stuck in my voicebox. I mention this because it seemed to intensify about two days after starting the Lyrica. However, after the first week, it evened out and has felt about the same ever since.

(3) Prior to taking Lyrica, I suffered from an intense burning sensation in my right ear, particularly where my right ear joins with my throat. That had disappeared by Septeraber after I'd been taking Prilosec for several weeks. However, on the third day of taking Lyrica, that sensation returned. It was quite intense for a few days, but after the first week it was not as bad. It's been about the same since last Wednesday.

(4) It causes dry mouth, which seems to exacerbate my upper larynx to a certain extent. I don't experience anywhere near the degree of pain that I felt a month ago after taking the Clear-Ease, but I do feel some mild pain that I don't think I would feel if not for the Lyrica.

Let me know if any of you have taken Lyrica and are experiencing any of these side-effects or benefits. I'm supposed to touch base again with my doctor in a couple of weeks. I'm only taking 75 mg twice a day. We may decide to increase the dosage, or even switch to a different medicine. I'll submit another post after another two weeks.

Happy New Year everybody!
 
Hi,

Just an update. I took lyrica for a couple weeks now, and my symptoms totally improved, especially with globus.
However, it is not a complete cure all, because I didn't sleep last night, thinking it was my last night in Germany. I tied one on. I also didn't take lyrica for a day for that reason..
Today I feel not so great. Anyway, this last week I felt more or less normal again so I kind of took it for granted and pushed a little too far.
I'll sleep now and hopefully things will go back to how they were for the last two weeks.
But yes, I noticed that when my symptoms did go away, the feeling was reduced to a small corner on the left of my larynx. That just seems to confirm that it is a type of neuropathy...
Anyway, I'll continue with updates, but lyrica is definitely looking into, and it did wonders for my painful swallowing and globus.
 
marigold, your story is identical to mine. you already had the guy tell you its nerves.

Lyrica is pretty low side-effects. I know it freaks you out, (especially considering how your "LPR" started) but either try that, or just endure because better ones are going to come out in the next few years.

Either way, you have to silence the nerves. I can tell that's what I'm facing too. You are pretty stoic to just put up with it. At least you aren't on those stupid ppis anymore.
 
It's very possible that some suspected LPR cases are a nerval thing, but most LPR sufferers also experience chest pains etc that can't be explained through such things.

There's a relatively simple way of telling, whether it's LPR or not: Pepsin immunoassay & ph/impedance probe or symptoms + hiatal hernia. If one of those is positive = LPR.
 
Hi .. I'm not worried about the cancer risk either. I have rheum arthritis and take some meRAB that can increase cancer risk but my r/a is now with these medications is under control and I can finally lead a better quality improved life that its not something I dwell on. I didn't mean for it to sound like it was something I feared the most or wanted anyone to be fearful. I am a cancer survivor and wanted to mention. When I did my search, that was one of the differences of GERD and LPR. The LPR had a risk of squamous cell cancer of the larnyx and rare risk of esophogeal adenomcarcinoma. The GERD info stated that is had no risk of the squamous but risk of esophageal adenocarcinoma.

There is an increased risk of cancer as we age anyway. I've had other illnesses that mimic cancer but didn't have cancer. Just be vigilant about check ups and getting your tests done when needed.

So..didn't mean to sound like I was fear mongering. I'll try to post that site.
 
I have LPR as well.

What about the hiccuping all the time? The severe acidic taste in the back of my throat? The build up of phlegm I get in my mouth and throat every day? Especially my voice, which has gotten VERY hoarse. The act of talking has become painful. While I don't get conventional heartburn, those symptoms sure do seem alot like an acid reflux problem. I don't have any cough though...
 
BTW for those suffering with coughs that dont go away google "chronic cough vocal fold paresis" you will see an extensive article by Jamie Koufman that describes each senario and medication treatments.

If you read this you can see not everyone is exactly the same. In some cases PPIs work , some need PPI's + TCAs or nuero drugs, and some just need TCA's.
My point is....
Without the proper tests your just guessing.
 
Ok

I looked it up you put that stuff in your mouth and cheek. I do take digestive enzymes which contain those ingredients but its pill form. They are really ment to help breakdown food in your stomach. I would never put that stuff in your mouth. No wonder it was burning after a while.
 
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