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  • what cured my LPR, or whatever it is.

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    Old 03-15-2014, 03:21 PM   #1
    LPRslayer
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    what cured my LPR, or whatever it is.

    Two Words: nerve drugs
    The ones I am talking about include, Tegretol, Neurontin, Elavil allow me to explain.

    I first started having this problem in August 2012 when I started a new and stressful job in asset retention. I contracted a throat infection that attacked my larynx from a co-worker who was forced to go to the emergency room. It was nasty and I needed antibiotics. One common link I noticed with other posters was that they two aquired this problem after an infection, which for me was the smoking gun. The problem was non-existant before but horrific after the infection.

    My vocal chords throbbed constantly and I had trouble talking, swallowing, and drinking. It was like there was a constant lump in my throat and constant burning in my vocal chords, especially after eating large amounts of food, or drinking pop or alcohol. The problem would not go away so I went to a voice pathologist, 2 different ENTs, a GI Doc, and my family Dr. The Voice specialist noted I had some swelling in my vocal chords probably due to acid reflux but nothing serious and thus I was misdiagnosed. I thought I had LPR and acid was getting into my vocal chords but after trying 5 different PPIs and antacids for over a year I had zero improvement. I raised the head of my bed 5 inches and stopped eating 3 hours before sleep while also avoiding acidic foods in a certain doctors cook book for LPR, this helped only slightly and the pain continued. By the way Doctors seem to have a hell of a time diagnosing this, I don't have much faith in modern medicine which almost completely ignores emotional and psychological factors.

    I was astounded by how negative all the posts were about this disorder and how little success people actually had with it. I spent hundreds of hours self diagnosing and reading boards until finally someone by the name of SeekingSunshine suggested in posts long ago that my Vagus nerve was damaged. This is the nerve that controls the vocal chords and since nerve damage is invisible it made perfect sense. I have no acid problem and never did, nor did I have any of the typical symptoms of heartburn, indigestion, chest pain, etc. I found it impossible to believe acid would shoot vertically up into my larynx avoiding the esophagus and causing no problems along the way.

    After one year of depression I suggested this to my psychiatrist and he was more then happy to prescribe all three medicines to see what worked. They all did. Basically they stopped my Vagus nerve from overreacting every time I ate or drank, even large amounts of food. The problem was resolved.

    I took Neurontin 100MG twice a day morning and night, and it helped immediately. Side effects are slight drowsiness and slight dry mouth.
    I decided to try a 100 MG carbamazapine chewable once a day in the morning and this also kept the problem at bay, no drowsiness just a little dry mouth. Then I decided to try elavil 10 MG once a day at nightime and this worked also only giving me dry mouth. All three of the meds work.

    You see I was convinced I had LPR because whenever I laid down my throat would burn immediately and this made it impossible for me to do my back exercises for chronic back pain that I was having, I could never lay upside down on my inversion table either. This caused more depression and anxiety which made the physical symptoms much worse.

    Now I can have big meals after I get done weight lifting and can lay flat and do my back stretches and there is no burning. In fact the problem has been decreased 90%. I can even go days without the medicine before the problems even begin to slowly return, after all nerves heal slowly and I don't rule out that the vagus nerve will recover over time. I never had acid seeping into my vocal chords which always seemed ridiculous to me.

    Well folks that's it. I just had to post my story after I read about so much pain and distress this "disease" caused. Also I have been on xanax for anxiety and flexeril and soma for spine pain for years and some people think these medicines relax the LES which to my experience they do not and don't really contribute to the problem, it was a viral infection. One thing I avoid is laying down for at least two hours after eating, including bedtime and avoiding naps because this always brings the symptoms back immediately. This is my first post and I don't really log in often but I hope this helps people. If you haven't tried the drugs give them a shot, I'm sure they will help if you are in a similar situation

     
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    Old 03-15-2014, 11:59 PM   #2
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    re: what cured my LPR, or whatever it is.

    LPRslayer, good to hear that you found what works for you.

    Do you mind to share your manometry and pH impedance test results, if you had one?

     
    Old 03-23-2014, 12:36 AM   #3
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    re: what cured my LPR, or whatever it is.

    It's really good to see this LPRSlayer, and I'm glad you entertained other ideas and tried things.

    I can't be sure what the meaning of the gender-based element to this is, but all I can say is this:

    If you are a young/youngish male,
    You get a viral/bacterial infection that affects your throat,
    and then you are left with really disturbing sensations in your throat,
    then you really want to be suspicious of anyone telling you this is a diet/acid/pepsin related problem. What you do next is up to you, but you might want to think that if you had a sickness in your throat and after it went away you have a problem in the exact area where the virus did its damage, then the problem is A THROAT PROBLEM AND NOT A DIGESTIVE TRACT ONE.

    I think this problem happens to women too, but the weird thing is that male posters often write stories have so many eerie parallels with mine. The story is this:
    They were normal, healthy, didn't have heartburn or chronic reflux
    They got an upper respiratory infection
    They now have a series of alternating, horrifying symptoms that came out of nowhere and completely depress them because they can't think about anything else.

    If so, and you are on these boards, do not stick with ridiculous PPI and diet nonsense because that is worse than doing nothing. I wonder how doctors who prescribe such high doses of ppis for such long periods that it probably permanently damages the patients' bones are not being challenged on their irresponsibility. But its the old adage. You have to be your own advocate.

    Well, the veterans on these boards know my views so I'm flogging a dead horse (I notice that emoticon is gone now). But my diet is even worse and more acidic than ever and my throat just continues to fade ever more into the background.

    PS, the latest craze now seems to be pepsin which will of course be a total dead-end, but will make the snake-oil salesmen rich. I have to ask though: If the cause of your throat problem is actually THE OPPOSITE of what some doctors have said it was for years, then you might want to consider that they are just guessing... or doing something even more unethical than that.

     
    Old 03-24-2014, 03:06 PM   #4
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    re: what cured my LPR, or whatever it is.

    Quote:
    Originally Posted by 33333 View Post
    LPRslayer, good to hear that you found what works for you.

    Do you mind to share your manometry and pH impedance test results, if you had one?
    To tell you the truth I never got the PH probe Test because I thought well, If I am already using the medicines designed to cure this problem then how is this test going to help me. Either way I get the same dead end treatment. I even scheduled the test but I cancelled and starting doing my own research every night when I got home from work, even weekends when my friends were out partying and having a good ole time.

     
    Old 03-24-2014, 03:20 PM   #5
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    re: what cured my LPR, or whatever it is.

    Hello Seeking Sunrise,
    Your information was by far the most valuable of anything I read and I must thank you. I must have spent 200 hours over a period of months on the internet. I told myself I would post something as soon as I found some solution. I have been extremely disappointed with Modern Medicine and doctors in general. They act like they have zero time for you and just seem to be so clueless, I mean all that schooling and all these different patients they see with similar problems, you think they would learn something. It's the same thing with back/neck pain though I will not get into that epic story. Anyway my problems are almost non existent now.

     
    Old 06-11-2014, 01:48 PM   #6
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    re: what cured my LPR, or whatever it is.

    I've had phlegm/globus and chronic throat clearing since March 2013. It started after having some sort of throat virus. I too have spent countless hours doing research. The fact that it started after a virus and the fact that my throat feels best when I first wake up in the morning led me to the conclusion that it is a nerve problem (LSN) and not LPR. The problem is that 24 hour pH and impedance testing showed that I do have a significant amount of acid reaching my throat. EGD also showed signs of reflux in the esophagus (I have no heartburn symptoms though or anything like that). Anyway, the ENT agreed that LSN could be a factor as well. I've already started on nexium for the LPR and am about to start on neurontin for LSN. Since it looks like I do have reflux, that may have to be controlled at least somewhat first before the LSN (if I have it) can be helped by the neurontin.



    Wish me luck. If it doesn't work, I might look into surgery because I have no desire to take PPIs for the next several decades...

     
    Old 06-25-2014, 09:58 PM   #7
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    re: what cured my LPR, or whatever it is.

    Thank you for your post lprslayer.
    My symptoms started with a sudden onset of a very bad heartburn after my normal dinner (i always eat healthy btw) it was 6 weeks after my laparoscopic appendectomy, my mum came to help right after the surgery but she brought sad news about my dad and so stress has been very high.
    Since then my symptoms gradually getting worse even tho i've tried to control it with very strict diet.
    Now i have sour mouth, sore throat, upper chest pain every day and worse after eating regardless what i eat. At night even with my bed propped 5inches, there are times that i feel my throat burning or blocked nose but so far i i have never waken up with acid in my mouth.

    5 days ago my doc has just prescribed me with nexium 20mg 2x daily and elavil starting 2.5mg.
    So far the nexium only helped very little and i'm about to start my elavil.

    Would you mind to share your exact symptoms?
    As i'm wondering with the drug elavil, if that's for nerve sensitivity, does it mean that you actually didn't have reflux, and it's just your nerves acting up?
    I had asked for endoscopy and ph monitoring tests but my doc said that they are not necessary as the treatments would be the same anyway.....

    Please please reply if you have time. Thank you!

    Lprorlsn, how have you been doing?

     
    Old 08-03-2014, 09:16 PM   #8
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    Re: what cured my LPR, or whatever it is.

    Kikytan,

    Has elavil helped?

    Quote:
    Originally Posted by Kikytan View Post
    Thank you for your post lprslayer.
    My symptoms started with a sudden onset of a very bad heartburn after my normal dinner (i always eat healthy btw) it was 6 weeks after my laparoscopic appendectomy, my mum came to help right after the surgery but she brought sad news about my dad and so stress has been very high.
    Since then my symptoms gradually getting worse even tho i've tried to control it with very strict diet.
    Now i have sour mouth, sore throat, upper chest pain every day and worse after eating regardless what i eat. At night even with my bed propped 5inches, there are times that i feel my throat burning or blocked nose but so far i i have never waken up with acid in my mouth.

    5 days ago my doc has just prescribed me with nexium 20mg 2x daily and elavil starting 2.5mg.
    So far the nexium only helped very little and i'm about to start my elavil.

    Would you mind to share your exact symptoms?
    As i'm wondering with the drug elavil, if that's for nerve sensitivity, does it mean that you actually didn't have reflux, and it's just your nerves acting up?
    I had asked for endoscopy and ph monitoring tests but my doc said that they are not necessary as the treatments would be the same anyway.....

    Please please reply if you have time. Thank you!

    Lprorlsn, how have you been doing?

     
    Old 08-03-2014, 09:39 PM   #9
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    Re: what cured my LPR, or whatever it is.

    Hi South Jersey,
    Being honest, I'm not sure whether it's helping at all.
    I can say that my symptoms are slightly better, but I think it's nexium, diet and carafate that are helping me.
    But again, my doc previously mentioned that the effective dosage is 30mg though, and at this point I'm at 7.5mg elavil as he also told me to slowly increase the dosage to let my body adjust.

     
    Old 08-04-2014, 03:32 PM   #10
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    Re: what cured my LPR, or whatever it is.

    I have had very inconsistent success with the neurontin. I've had stretches of days with 80% improvement, but others much worse. I thought that I would be continue to get better but my ENT wasn't so optimistic. He's said that he's seen a lot of patients who had success with neurontin (or other nerve drugs) early on, only to diminish over time. He thinks that with the amount of reflux that I have, this will be the case for me. I met with an expert reflux surgeon in my area who thinks that I could be helped by surgery, possibly linx. I'm going to see how my symptoms are for another few months but I think with the way it's looking, I will opt for the surgery (pending insurance coverage).

    *The normal person (no throat symptoms) is said to have a negligible number (0 or close to it) of reflux episodes per day that reaches the throat. 24 hour pH and impedance testing showed 32 episodes of reflux (about half acid, half non-acid) reach my throat.

    Last edited by Administrator; 08-04-2014 at 05:52 PM.

     
    Old 08-04-2014, 08:10 PM   #11
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    Re: what cured my LPR, or whatever it is.

    LPRslayer, I'm glad you found your solution.

    For those who are new to LPR or who are part of the large group of people who are frustrated as they seek solutions to their problem, you are not alone. Threads like this one are so popular because there often is no easy answer, as LPRslayer alluded to.

    I'd like to share a bit of what I've learned on both sides of this issue. Is it Laryngopharyngeal reflux (LPR for airway reflux), inflammation/irritation of the Vagus Nerve, both or neither (something else)? Often the symptoms we have can be attributed to any or all of these. The challenge for the patient and the doctors is figuring it out.

    In my case, through multiple tests over a series of years, I've found that I have 6 different medical issues that manifest the exact same symptoms (chronic cough, throat irritation, difficulty breathing). I have a team of specialists who I need to work with when my symptoms flare because it take treating all issues to get my balance back. Yes, I have extremely severe LPR and GERD. Barium testing and Multiple pH tests, both upper and lower, showed severe acid reflux and non-acid reflux issues. Basically, my LES isn't functioning. I do need to treat aggressively for the reflux issues (long story). My problem this last year was that I've had symptoms for almost 9 months. In the beginning, the flare started with one of my other health issues. Unfortunately, after a couple months, that issue was under control (confirmed by testing), but my symptoms persisted. All of my other health issues were treated and determined to be under control, but the symptoms persisted. A couple specialists, including my Pulmonologist and Gastroenterologist told me that my GI and Pulmonary symptoms were under control, yet I continued to have problems. They didn't have anything else to offer. After research, I requested and was put on Amitriptyline (Elavil) 5 mg. It didn't make a difference. It was a couple months later that I met with my ENT who discussed a Neurogenic Cough (Vagus irritation triggered) and decided to try me on the Amitriptyline 10 mg/20 mg, with a plan to try Tramadol if that didn't work. This time, I started with the 10 mg for a week, then took the 20 mg for a week or two, then backed down to 10 mg when my symptoms got better. I continue to take that dosage and my symptoms have stayed resolved for about 5 weeks now. It seems that, my other health issues actually triggered/ contributed to the Vagus nerve irritation. I will continue on the Amitriptyline and will re-evaluate things in the fall. My experience: I have both LPR and LSN and they are difficult to differentiate.

    My lessons on this over the years: continue to seek out the root causes of my symptoms; treat those causes; if one thing doesn't work, seek to try something else; more than one thing can cause the same symptom and it can take methodically treating each thing sometimes to find the solution; educate and advocate for yourself; don't give up. A solution is out there.

    I find the medical analogy often applies when it comes to the LPR vs. LSN symptoms. If it sounds like the hooves of a horse, it is most often a horse. Sometimes though, it can be a Zebra instead. Without looking closer, many doctors fail to recognize this Zebra. If you think you are the Zebra, it often takes a lot of advocating to get the right doctor to look at it closer.
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    Old 08-05-2014, 01:05 AM   #12
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    Re: what cured my LPR, or whatever it is.

    Hi Mountain Reader

    Wow those are really great news to hear! Do you still feel heartburn after amitryptiline?

    lprosln: That's strange, do you feel they are more likely in one side of the throat? do you smoke or drink? I think those can make reflux worse. And your diet? For how long have you been on Neurontin?
    Did you have a barium swallow too?
    Thanks!

    Last edited by al775; 08-05-2014 at 01:29 AM.

     
    Old 08-05-2014, 06:58 PM   #13
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    Re: what cured my LPR, or whatever it is.

    I don't feel it on only one side of the throat. It's more of a general feeling. I don't smoke at all, drink rarely. I've tried to make changes to my diet here and there to see if it makes any big difference, haven't really noticed anything. I don't think diet is much of a factor. I've been on neurontin for about 6 weeks. Barium swallow was one of the first tests I had done. It's used to rule out other conditions that might cause a phlegmy throat. Nothing showed up for me.

    I've read a lot about the one side of the throat thing and people with that having a lot of success with nerve drugs. You definitely should try to get a prescription for one of those if that's what you're experiencing. But to rule out LPR, 24 hour pH and impedance is the test you should take.

    Last edited by lprorlsn; 08-05-2014 at 07:06 PM.

     
    Old 08-05-2014, 09:26 PM   #14
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    Re: what cured my LPR, or whatever it is.

    Quote:
    Originally Posted by al775 View Post
    Hi Mountain Reader

    Wow those are really great news to hear! Do you still feel heartburn after amitryptiline?

    Thanks!
    al775: My reflux story is a bit long and complicated. Unfortunately, my reflux issues are on the extremely severe side. I've been told by several specialists that I'm an 'unusual case'. Despite the severity of my refluxing over the years, I have never actually had heartburn issues. I have had a chronic cough, throat irritation, and at times life-threatening breathing problems (from the acid irritating/aspirating into my lungs). I was trying to find a solution to a severe chronic cough. Prior to taking the amitriptyline, I had spent a few months taking Dexilant 60 mg in the am, Omeprazole 40 mg before dinner, and 300 Ranitidine at bedtime. My standard is the Dexilant. Even with the additional meds, my symptoms didn't change. That lead me, and my docs, to believe the Dexilant was doing it's job and the cough was something else. (I did have a 24 hr pH test on the Dexilant last fall to see how well the medication was working. Refluxing, but significantly less than in the past.) That was where the amitriptyline came in. At this point, my cough is completely gone, I have no throat irritation, and my breathing is under control.

    I found the book "The Chronic Cough Enigma: Acid reflux, Asthma, and Recalcitrant Cough, the path to a cure" by Dr. Koufman to be helpful since I have all 3 conditions that all individually manifest as a cough.

    Testing I recommend if you are trying to figure out if it is reflux/LPR: 24 hr pH testing (both regular testing and upper Restech probe testing), Manometry, Upper Endoscopy, Laryngoscopy (ENT scope of throat and vocal cords), Esophagram, Modified Barium Swallow, and symptom depending your LPR symptoms: Pulmonary Function Testing (if short of breath), chest x-ray, or Colonoscopy
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    Old 08-06-2014, 01:04 AM   #15
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    Re: what cured my LPR, or whatever it is.

    Hi Mountain Reader,
    Glad that you have sorted all your probs!

    So when you did the tests: endoscopy, barium swallow etc all came back clear and actually you didn't reflux at all even though you had all the symptoms?
    With your symptoms,had you got sour taste in your mouth?
    And whether your symptoms were related to having meals like they got worse after meals? Or they just stayed the same no matter what?
    Did you feel better when you wake up or you also refluxed at night?

    I'm under the perception that nerve drugs would only be helpful if the real prob isn't the reflux but the sensitive nerves. And with sensitive nerves, the person won't have any prob at night because there's no actual reflux, and when the person is asleep, the nerves are asleep & the prob is like "gone"....

    In the beginning when you got this prob, was it the real reflux/gerd/lpr? I mean, it could be that your esophagus/throat had been healed by dexilant etc, but the symptoms persisted because your nerves stayed sensitive.

    Thanks Mountain Reader for sharing your stories! Everytime I heard/read someone got better or cured I feel like I still have some hope

     
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