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2 years of throat clearing, thick mucus and post nasal drip sensation (allergy/reflux/nerve?)

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derekjp
derekjp

Hello,

Suffering for 2 years with sensation of thick mucus stuck at the back of the nose, which I'm often able to hock up out of my mouth (clear but very "snotty" and like thick glue when it's in a tissue).

Sometimes it gets in my throat and I often clear my throat all day long too. I guess this is post-nasal drip, but not watery or thin (like you apparently get from an allergy), it's very thick and feels awful like a lump or glob that won't move, until I hock it up, but within minutes it's back again...

Tried all reflux and allergy medications (double-dose PPIs, steroid sprays, allergy RAST tests, antihistamines, singulair, antihistamine sprays, nasal irrigation, gastrocopy, multiple nasal/throat endoscopes, sinus CT scans), and they can't identify the problem... All of my symptoms disappear completely, when I eat or lay down with my head to either side (which I find very odd! Equally, if I take pseudoephridrine (oral decongestant), my symptoms go too (but I know that's not a long term option).

Anyone ever dealt with anything similar or know what to suggest next?I've been thinking of self-treating with amitriptyline (10mg at night) and gabapentin (100mg 3x per day), to see if this is a hypersensitivity/nerve issue. I have absolutely no other symptoms and can't live much longer like this, it's completely ruined my life and things are just getting worse sad

Thanks for any help at all.

15 likes, 758 replies

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  • derekjp
    derekjp

    Posted

    Hi All -- please don't be mistaken into thinking my problem is resolved... I didn't say that and sorry if anything came across that way...

    What I said was that I discovered 2 mucus thinning medications that have made life about 50% more bearable: gelomyrtol (available from Amazon, and NAC (available from most health/supplement stores). I often alternate between the 2 every 2-3 weeks so as to have "drug holiday".

    NAC is more effective for me, and after a few days at 600mg a day, I start to just forget about the thick mucus/phlegm especially in my throat and trying to swallow, because it definitely thins it out. It doesn't reduce the amount though which has always been excessive for me since I got sick 4 years ago now...

    I've had a few surgeries under general anaesthestic since I've been feeling like this, but certainly nothing before that might have caused it. I'm not counting that in any relation to my diagnosis. But what I would say, is that whether your are very sick (like I was), had surgery or anything else health-related that might cause permanent obstruction to the immune system, it's possible I would think.

    Regarding Silent Reflux: I've seen 2 GIs, had OGD, high dose PPIs + Gaviscon Advance for 2 months (Protonix 80mg), and then tried switching to Nexium (80mg). Absolutely no difference whatsoever, and that includes eating a dry diet for 3 weeks with no alcohol or sugar. Also, these drugs were really prescribed because I demanded it. ENTs and GIs have always ruled out any form of reflux because my esophagus was clear and there is never any swelling/irritation present in my throat. There is a possibility of non-acid reflux but it's so rare to the point where all of the 20+ specialists I've seen have never witnessed it themselves.

    There is one more test I could do which is called a 24hr pH mamotary study, that basically monitors any reflux into your throat (whether it be acidic or non-acid). This is supposed to be the gold standard to completely determine reflux to the throat level. However, it's incredibly expensive andy insurance don't cover it, plus I honestly dont believe I have any reflux issue from the meds I've tried and doctor's advice.

    For anyone that hasn't fully evaluated reflux as a cause, you should definitely have things investigated to some degree though.

    I will try the oil of oregano supplement as that's new to me. Already ordered it! smile

    Best wishes to all.

    Derek

    • perry37168
      perry37168 derekjp

      Posted

      Thanks Derek do these mucus thinning meds have any side effects ? When u take them how long does it take before the mucas starts thickening up again and u return back to normal ? 
    • donnag1966
      donnag1966 derekjp

      Posted

      Hi Derek, has anyone ever scoped your trachea?  That was where my issue was that caused almost identical symptoms. 
    • dave95732
      dave95732 donnag1966

      Posted

      What issue did they find in your trachea, maybe I we can mention it to our doctors. What is the diagnosis and treatment? Thanks in advance.
    • darren01530
      darren01530 derekjp

      Posted

      Oil of Oregano, AND, cut your sugar, carbs and alcohol to zero. You'll see a huge difference! NO bread, pasta, potatoes, rice. NO cookies, sweets, ice cream, candy, or fruits.

      Meat and veggies only, after a week you wont need any pills.

      Best

      dc

       

    • donnag1966
      donnag1966 dave95732

      Posted

      I have tracheal stenosis, or a narrowing of the trachea. I was tested for silent reflux to see if that was the cause but did not test positive for it. Derek was saying his insurance won’t cover it. Not cool. It really may be the problem. Anyway, this was 3 years ago that they tested me for it but I had lost almost 90 lbs right before that. I was eating better at the time of the test. We determined that I may have had silent reflux when I was overweight and the damage could have occurred then. But I had scar tissue from something in my trachea just beyond my vocal chords. It had built up over the years and at the time my airway was just a tiny opening to breathe through. He said sometimes  it is from an undetermined cause. 

      Most docs treat this by sectioning off the damaged part of the trachea. This is quite invasive and leaves a large scar across the front of the neck. Sometimes they end up with a tracheotomy.  My doctor, the only one in the US, was using a less invasive procedure. He opened up my airway with a balloon in office and then in a quick surgery lasered the tissue away. Mine kept coming back, as it does with a some people.  I went back every 4 months and he would laser away the tissue, in office. It was pretty simple. I always watched as it was done. Less invasive and simpler than going into the OR every time. He said sometimes it stops after a few times of clearing it away. Sometimes it doesn’t and the tissue just “wants” to build back up. That was my case. This was almost three years ago. But I have been symptom free during all this time. Normal energy, heart not racing, BREATHING!!! Waaaay less mucus! 

      There are two other physicians in the world who are treating this non invasively. One in England was doing a skin graft procedure. So my doc learned how and I just had that procedure done the 1st of December.  I went into the OR and he removed all the damaged tissue down to the cartilage and took a small graft from my thigh and stented it in place. I did have to go back in the OR to have it removed. Hopefully thIs will be a permanent solution. I will be honest, I am of late trying to abide by a reflux diet, just in case. 

  • derekjp
    derekjp

    Posted

    I take the meds in the morning and by late evening the effects wear off, but I don't mind that because I'm laying down then/ready for bed, and I get relief that way...

    Donner -- that's interesting. Did you have any surgery on the trachea or take meds to help resolve your issues? I began this whole relief by seeing a respiratory doctor. He did a bronchoscopy and saw nothing. I think that involves scoping the trachea...? I guess I'm all clear on that front, but then again, I really didn't think that particular specialist gave a s****

    Derek

    • perry37168
      perry37168 derekjp

      Posted

      So when u wake up in the morning everything is back to normal ?
    • c37137
      c37137 derekjp

      Posted

      None of this work d for my husband he has had sinus surgery, GERD surgery and 2 other surgeries and this still remains clean diet no drinking and it still remains

       

    • donnag1966
      donnag1966 derekjp

      Posted

      Derek, mine was discovered when a bronchoscopy was being attempted. MIne had progressed to the point of a small hole the scope wouldn’t even go through. I was quickly referred to my current otolaryngologist.  Some narrowing is not as bad. Mine was actually pretty nasty scar tissue built up. 

      Also, I responded with my story just before I got this notice from you on this thread. It tells pretty much it all up to my recent December procedure that will hopefully be a permanent resolution.  I sure hope you can get straight! Being miserable sucks! And having no one get to the bottom of it is extremely frustrating. Prayers for you friend.

  • SheNitric
    SheNitric derekjp

    Posted

    Hello everyone! I’m a sufferer of this going on 2+ years now. I’ve had an interesting hit from a rheumatologist after two failed sinus surgeries. He believes I have a localized auto immune disorder that falls into the rare sub set of vasculitis. Because it’s localized it won’t be showing up in lab work and tests, the affected tissue has to be directly biopsied (which I have scheduled January 25th along with scraping all the crap out of my sinuses and culturing... I ended up getting Mrsa and pseudomonas infections i. My sinuses this year.) I have all of these symptoms people have listed and the rare diseases I’m being biopsies for are called Wegners Granulamatosis with pokyangiitis and eosiniphillic granulamatosis with pollyangiitis... maybe something to research. The Vasculitis Foundation for these diseases have patient stories and they sound like us 
  • SheNitric
    SheNitric derekjp

    Posted

    I’ve had these troubles as well for 2+ years along with rounds of anti biopics that failed to help, two unsuccessful sinus surgeries (deviated septum, opened up sinus pathways and removed enlarged turbinates. 2nd was the clean out this thick sticky crap).  My lab work was showing a higher than normal ANA count so I was thn sent to a rheumatologist who suggested I may have a localized form of an auto immune disorder that falls under the sub st of vasculitis. I am scheduled for an extremely aggressive cleaning out of my sinuses and packing then full of meds. Also reculture to make sure my mrsa and pseudomonas infections haven’t come back, and a biopsy.  Localized vasculitis does not show up in labs and can only be diagnosed with a biopsy of affected tissues. Google churgg Strauss sybgrome and wegners granulamatosis. The Vasculitis Foundation has patient stories and so many of them sound so much like us here!!
  • helevald
    helevald derekjp

    Posted

    I’m suffering from the same thing. I am so tired of it already. I had a CT of Sinus (normal) I see the doctor Wednesday for an ENT referral. It’s starting to affect me at work worse than it has been. I have to leave meetings to go spot. it’s no way to live. I’m constantly hacking up phlegm. I hope they find a cause soon. I am so disgusted by it. I’ve tried Nexium and everything you can think of. 
    • darren01530
      darren01530 helevald

      Posted

      Try Oil of Oregano capsules, AND, cut all sugar, carbs and alcohol to zero. You'll see a huge difference! NO bread, pasta, potatoes, rice. NO cookies, sweets, ice cream, candy, fruits or juices.

      Meat, fish, poultry, eggs and veggies only, drink six glasses of water a day. After a week you'll see big improvements, lose a few pounds, and save a lot of money. 

      It worked for me, and no more daily hacking. ENTs have no idea about this.

      Best

      dc

    • angie5252
      angie5252 darren01530

      Posted

      Darren do you eat cheese? I happened upon this conversation and could have written it. I hav had symptoms  for four years now and they seem to worsen as time goes on. I developed burning mouth symptoms a year and a half ago and also had sibo.  I have had numerous scopes and have seen a number of doctors. Tried several medications. I have almost complete relief when I lie down or have a cold. Started with a terrible respiratory infection and I had to take 3 rounds of antibiotics. None of the scopes showed any damage. Thanks Darren 
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