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LPR/Silent Reflux - desperately in need of a miracle. Has anyone recovered from this?

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Anxious_Alex
Anxious_Alex

Hi - I'll be as brief as possible. For almost a year I have had symptoms which have worsened, starting with throat clearing and progressing to regular spiting out of white, frothy stuff, post nasal drip, lump in throat or sharp sensation, streaming or blocked nose and hoarseness. These are all unpleasant and irritating but because I talk for a living my work is becoming badly affected so it is now making me depressed and anxious as well. I was referred to ENT, had the camera up the nose and down the throat to rule out anything sinister and was given Omeprazole and Gaviscon Advance. No advice, no explanation. I had to find it all out myself. (and I'm not confident/assertive with docs, either).

The drugs haven't helped, I'd go so far as to say the reflux significantly worsened. I had faith in the Gaviscon Advance having read how it works but that hasn't made any difference either. I have monitored everything I eat and drink and can't find anything that triggers it with the possible exception of bread, and I may be grasping at straws there. Certainly coffee, alcohol, spicy food etc don't trigger it and ginger, acidophillus, apple cider vinegar don't help. It does seem to be cyclical - I'll have a week or so of decreased symptoms then it gradally works up again to two or 3 weeks of hell. No heartburn, and the reflux is almost always upright, no problems sleeping...just the other 17 hours a day! The ENT was brusque on my return visit and said that, aside from speech therapy, there was nothing more he could do for me. This can't go on, though. At it's worst it makes me tearful and desperate at work and speech therapy isn't going to stop me spitting up into a whole toilet roll each day, or reduce the other symptoms. I'm also worried my teeth will rot and I fear for my job. Has anyone experienced this with the same pattern/lack of triggers etc? I would love to hear any positive experiences that don't just repeat the same old same old, ie, raise the bed 6 inches, dos and donts with food etc.

28 likes, 899 replies

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  • sonya60950
    sonya60950 Anxious_Alex

    Posted

    Hi Alex and hello everyone!

    THANKS FOR BRINGING UP THIS ISSUE!!!! I have been experiencing the same issues as many of you over the past eighteen months and have been diasnosed mistakenly as a usual GERD case. I have no heartburn, and my main problem is the phlegm in the throat, post-nasal drip, muscular tension in the upper chest, throat and face, and what is worth INSOMNIA...I have not been able to have a proper sleep since more than a year...My sleep is fragmented and unrefreshing.

    Having taken all those PPI with different dosages as well Gaviscon, Riopan etc etc., my symptoms worsened...I am also on a strict diet and lost 9 kilos ever since it started. I got very anxious and depressed throughout these period as well as I am unable to function as a normal person due to my constant fatigue. 

    One thing that has helped me so far is the green clay water which I drink before going to bed and early in the morning...it relatively reduces the unpleasant mucus build-up...but it is not a solution of course. Taking lots of normal water also helps a bit...I took also some herbal medicine called gemmotherapy - a therapy based on plant buds (ficus carica and tilia tormentosa are the latin names). One clams down the stomach, the other (i guess tilia) produces such pressure inside the stomach that it helps to train the valve muslce to learn back 'how to close properly'. Someting like gymnastics for tat valve smile I had almost no sings of any LPR while taking this together with a very strict diet - the susual reflux diet plus no red meat, no banans, no milk products, no pulses apart rice, no fresh salads and fruits and veg, all cooked. But since I am also anemic I had to go back to eating red meat and this would bring me back to the usual mucus build up...

    I realized that those medication just toxified my body and made it worse as they were treating the symptoms and not the cause of it (since the cause is the LES - the sphinctor that does not close and will never close accoring to most of the medical professionals I have seen). And I have seen doctors in the UK and in Italy where I am currently based. 

    One thing that still give me hope is that finding out the root cause of the sphinctor failure might help. One of my friends has been diagnosed and treated for GERD for 7 years untill he went to a private clinic and they told him to check his intestines and to see if the pressure on the stomach valve was coming from down...IN fact that was the case, and what is more they discovered he had a gluten allergy and this had caused all the other issues since it was not being addressed despite being the root cause of everything else. So for the moment, he has significantly less issues and more managable life.

    I have started a gluten free diet myself since a week and will try another 5 weeks to see if my syptoms are getting any better.

    I am sure there is a remedy, we just haven't found it out yet. Keep searching for it and never give up!!!!!

    Have a good rest of the weekend!

    Sonya 

     

    • AlexNYC04
      AlexNYC04 sonya60950

      Posted

      Sonya,

      I too suffer from insomnia. Even when I sleep it feels interrupted and I'm still unrested. But what's weird is I never wake up choking, snoring anything that would indicate actual reflux. It's almost like the second Im not asleep and decide to lift my head and get up the build up becomes apparent.

      Im trying hard to stick with a gluten free diet but I've been underweight to begin with and have trouble finding foods to eat. Whenever something seems gluten free it's got loads of sugar or vice versa. Both are important to avoid.

      I also mentioned probiotics to "re-balance" our system. Along with an enzyme supplement for candida cleansing. They too will help at nighttime. Def stick with it bc ivE been discouraged when not seeing immediate results

  • susiecooper16
    susiecooper16 Anxious_Alex

    Posted

    Hi Alex - so sorry to hear of your suffering. I have something similar which has also affected my trachea. I am about to go and get allergy tested because LPR could be triggered by food intolerance - worth it I hope. In the meantime I have found that liquorice tea and sweets have helped as has sticking to the LPR diet - which I am sure you will know of. Good luck.

    • susiecooper16
      susiecooper16 dolphin005

      Posted

      The tentative diagnosis is that acid leaking down my trachea has caused a growth across it reducing my ability to breathe. I have had the growth (like a web) removed five times now and after 3 years without a diagnosis my consultant thinks it is caused by the silent reflux.. I wonder why you ask - do you have some experience of this? I would be most interested to know as the next step maybe surgery on my oesophagus - fundoplication or Linx. However I am doing everything possible to change my lifestyle to make this unecessary - fingers and toes crossed!
    • dolphin005
      dolphin005 susiecooper16

      Posted

      I asked because I am having some sort of issue that I can't figure out. It seems lower throat and it sometimes burns to take a deep breath in that area. I also now have shortness of breath when I try and walk my normal fast pace when I walk outside. I have fibromyalgia, so shortness of breath has been there off and on for 5 years, which either from fibro or reflux, who knows.. But this is different. I feel like it is all upper airways and in my throat. It almost feels like it is closing with the shortness of breath. I did have an ENT scopt me last summer and I had a nect CT with contrast in September. They saw nothing. I know there are small thyroid nodules, but they keep saying they are so small it wouldn't cause these problems. I don't know if this is a reflux thing, or I have come across Upper Airway Resistence and the other one I recently found was vocal cord dysfunction.. I just can't find too many people with my symptoms.. That's why lol
    • susiecooper16
      susiecooper16 dolphin005

      Posted

      Hi again. Have you had lung function tests to see if your breathlessness is coming from inhallation resistance?
    • sonya60950
      sonya60950 dolphin005

      Posted

      Hi,

      I have similar symptoms to yours regarding the shortness of breath and the fibromyalgia...I also know two more people with the same issues. One of them had been GERD treated with little results for 7  years when a doctor in a private clinic told him to get his intestines checked. This is when they found out that he had a severe form of gluten allergy and his intestines were not in a good shape and all the acid stuff was coming up from down...Now he is still taking his GERD medication, but together with a very strict gluten diet, his syptoms are much less....

      Getting to know his case, I tried to find out stuff about gluten allergy and came across to some websites that are mainly in German that gluten allergy could manifest itself not only through diggestive issues, but also via fibromyalgia including depression,  muscular pain, sometimes it might be the cause of migraines...so it is very different for different people. And these websites (testimonials of some patients treated by a doctor in Munich) were suggesting to try out a gluten free diet for 6 weeks to see if your sypmtpoms will improve.

      The other person was diagnosed fibromyalgia and GERD as well after she lost her mom. So she is not sure what caused what. The grief caused low mood and this in its turn GERD and then the muscular pain was the result of the PPI medication's side effect...or it was fibromyalgia and GERD on their own...Bit confusing...But she has the same shortness of breath thing. She has been told the cause is psychosomatic in any case. SO they have told her to see a psychotherapist alongside to the GERD and fibromyalgia treatments.

      And finally, my case. I have got a severe silent reflux after having had a very stressful year. I cannot breath properly when i lie down. Sometimes I feel like I have forgotten to take a breath in and have to breath in as a conscious act which comes across as a very unnatural thing to do. Also I have my days of being low and severe musclular pain. I was on PPIs and Gaviscon/Riopan for half a year. I changed four differernt PPIs and none of them seemed to work for me. It would just cause more issues with digestion (which was not the issue to begin with! I jsut had spasms in my throat and difficulty to breath). I completly lost my faith in my doctor so started looking for other advice. I just saw a A&E surgeon who also practices homeopathy last week and was astouned by her approach...when i briefly explained that i could not sleep and lie in bed, had Gerd therapy she started asking me questions that would resonate with my symptoms...one of them was the thing of shortness of breath!!!! This was before I had told her about it. Afterwards she looked at my endoscopy and told me that basically my stomach issue and acidity are not the ROOT CAUSE and that was why antiacid medication had not worked for me. SHe tole me that I had a problem with my DIAPHRAGM and this was causing shortness of breath, tension in muscles of the upper chest and pushing the upper sphinctor of the stomach (LES) open whiel trying to get as much oxygen as possible. So she recommended me an Osteopath saying that this could sort out my issues in an hour session. Also acupunture was an option but it would have taken longer. I have not tried any of them yet as I am on the waiting list. Additionally, yoga and other breathing excersizes might help- there are some for musicians and opera singers that help the diaphragm move up and down and relax... But she also gave me some homeopathic medication that surprisingly were addressing quite few and seemingly not connected symtpoms at the same time. One of the is SULFUR (which is for the shorness of the breath! and detox of all the chemicals that went into my body throughout the GERD therapy- that was a huge intoxication apparently as my blood test showed that the levels of iron, magnesium were decreased hugely) and the other one was IGNATIA AMARA (working more on the mood side, yet also on the muscular spasms on the throat and chest as well as the mucus in the throat and digestion). I have to be on a diet too. She was so reassuring that this is not a lifelong condtion that once i sort out my tense diaphragm it will be fine, that i came home from that visit and noticed that I was experiencing less pain and less acid reflux. my whole mood also went up.

      It is too early to say anything, but I wanted to share with you my experience and to give you some hope of easy fixes! I am also trying out the gluten diet for two weeks now. 

       

    • dolphin005
      dolphin005 susiecooper16

      Posted

      Ugh - I typed but didn't realize the faded font meant it wasn't really there lol. Now I have to start all over... I had lung function tests 5 years ago when it all started. This is a bit different. I did go to the doctor yesterday and he thinks asthma. I am still thrown off by the pain at the bottom of my throat. Even the inhalers burn when they hit that area
    • dolphin005
      dolphin005 sonya60950

      Posted

      Hi Sonya,

      Thanks for taking the time to reply!

      Do you know if the other two people or yourself have the same with the burning at the bottom of the throat? Even when I take the inhaler it burns down at the bottom. 

      I have gone gluten free a few times and never noticed differences in anything. I am going to try the MD Factor Diet and see if that helps. 

      The burning in the throat started last summer, however, the shortness of breath getting worse started this past winter here in Canada. I have been extremely stressed and breakdown daily, so I am sure that is contributing. I lost my cat that I was close to suddenly and unexpectedly last November and then my job 8 days later, so a lot of stress. I am still grieving. I have lost other cats before, but this one was particularly traumatic for me.

      I have completely lost faith in Western Medicine. I was seeing a naturopath when I was working, but we were having a hard time finding something that would work as I am extremely sensitive. I quit smoking back in October and lasted 7 weeks, but started again when I lost my job. The burning at the bottom of the throat did not go away. I quit again at the beginning of March, but I am ready to start again because I am ready to give up. Nothing is working anyway and I am just in a bad place, which contributes to symptoms. Definitely not the cause of these symptoms, but the stress makes it worse. I know I have a sliding hernia. I wish I could see an osteopath. I did try finding one when I was working. One that was close enough and could help a sliding hernia. At the time, I was not successful.

    • sonya60950
      sonya60950 dolphin005

      Posted

      Hi again!

      The other persons did tell me about the burning in their throat...ONe of them (the gluten guy) also had bad heartburns...I didn't have any heartburns. Very seldom. BUt I used to get the sensations of burning in my throat when I was on PPIs and would eat stuff that I shouldn't...PLus, the PPIs would lower the level of acidity of my stomach juice and I was unable to digest the food if that was heavy. All the issue would cause a distress for my stomach and as a result I would get reflux on my throat burning ...and belive me there were more acid with antiacid medication...IN other words, too many things going into my stomach and it would respond as confused and produce more stomach juice in order to be able to digest the food. However, since i am on a diet now, this feeling has disappeared leaving there a massive amount of phlegm in which is very distrubing, but at least I don't have the pain. The one thing that had heleped me with that was drinking green clay water (not the clay, it sits in the bottom after several hours of mixxing one WOODEN or PLASTIC spoon of green clay into the water) before going to bed and the first thing in the morning. I used to get it in the UK and there was something also called bentonite clay which I am not sure is the same or something very similar. 

      It sounds like you had too many things going on in your life at the same time. I am very sorry for your loss....And I totally understand (based on my own experiences) your low mood due to what has happened to you and distrust in mainstream medicine as a result of them failing to understand what's going on...I have all of them too. I guess the fact that this condition is so present and so disturbing does not help and even contributes to feeling worse...But in the end of the day, I believe that my issue started as psychosomatic and got very physical as a result of bad medical advice and time passing by....as well as by the mental and physical stress/frustration caused by the discomfort of the condtion....

      I know that both GERD including the silent acid reflux and asthma could be psychosomatic...and I wonder if you might want to look into that...I am a psychologist and have seen people during my training with asthma and gastro issue recovering after therapies (I do not practice psychotherapy, but but work for organizations).

      Best of luck!!!! 

    • CCinCal
      CCinCal sonya60950

      Posted

      Hi Sonya

      Are your symptoms better or gone now with these alternative treatments you've tried? Thanks. CC

  • Ollie3636
    Ollie3636 Anxious_Alex

    Posted

    Question: has anyone had a Nissen Fundoplication and how has it helped your LPR?

    Hi all and Alex, this seems to have become the main LPR forum online. I just need to vent so apologies all in advance but I'm SOO happy to have found a group of other people who understand what LPR is like. 

    I think I've had LPR for almost 3 years now, I'd been a full time choral singer since the age of 9 singing 6 days a week in the cathedral before and after school, then I sung all through secondary school and at university. Until BOOM LPR hit. Of course I had no clue what it was, I almost laugh thinking about telling the indian GP about this vocal fatigue and strain I was getting while I was talking. He had no clue what I was on about and sort of rubbished my concerns. 

    I've mourned the singing and I'm over it but the talking! How sick is this disease?! It robs you of your ability to communicate with others! That is the most isolating, claustrophobic thing I can imagine, the semi-mute. Of course no one understands and the inability to go to social gatherings turns you into a hermit. 

    It's been a long road, I am now at the point of waiting to hear back from my 24 hour pH meter to find out whether I'll qualify for NHS nissen fundoplication. 

    The plan in my head has been if he says no then I'll just earn the money to afford private surgery. I have just got the job of my dreams starting in 2 weeks BUT MY VOICE HAS JUST GOT SOO BAD!!!!! Like I'm hoarse and in a lot of pain when I talk. I'm doing a two week trial before they hire me so all my dreams could be ruined and I'll be unemployed and unable to pay for surgery. 

    I'm not eating any fat or acid foods, small meals, PPIs and Gaviscon. 

    I think the stress brought it on so I'm pretending I'm on my own private beach and all is good! Love you all!

    Ollie

    • tata40402
      tata40402 Ollie3636

      Posted

      Wow Ollie363, i feel horrible. I have phlegm in my throat every time i eat. It's just depressing. There has got to be some help somewhere. I dont' feel like doing anything.
    • moonbuggy
      moonbuggy Ollie3636

      Posted

      Hi Ollie

      Had mine last summer and I am 10x worse - plus I have now inherited a bunch of other symptoms. The op isn't so successful with LPR (does help some but not all), I want to scream as none of the docs I have seen have any idea what to do with me now. PPI's dont work - my throat is so red and feels like it is closing up

      I'm just plodding on trying different natural things and struggling to survive each day.

      You all have my sympathy as you feel like you're not living anymore just existing

    • tata40402
      tata40402 moonbuggy

      Posted

      Hi moonbuggy. This is a sad situation. I started about 2 months ago with the swallowing issue, went to get an endoscopy which shows some congestion, and gastritis. Then came the mucus in my throat which wont go away. Now they upped my omeperazole, ans zantac. None of this works. Do u have excessive mucus in your throat. I am so depressed
    • sonya60950
      sonya60950 tata40402

      Posted

      Hey,

      Have the same issues. It is very annoying as the mucus is very 'present' and gets worse during the night or whenever I lie. So I struggle to sleep properly... The one thing that helps is drinking green clay water (just the water and not the clay!) before bedtime and the first thing when i wake up. and sleeping in a half sitting position. You can do also some inhalations with olbas oil (usually you get it at boots) and take long hot showers and breath in the steam. That helps too. The other thing that was amazing was a siroup I got in Italy from a herbal remedy lab called Floralba with a label all written in chinese smile But they told me that was a strong herbal decongestant with propolis, so had no side effects and for me it worked better tthan the one you get over the counter at boots or local chemist's. Asking your local herbal remedy shop might be an idea...

    • sonya60950
      sonya60950 tata40402

      Posted

      forgot to mention that drinking about 1.5 litres of water per day helps a lot too
    • angie43
      angie43 Ollie3636

      Posted

      Dear Ollie 

      I had a Nissen at the end of 2013 and it did help with my LPR symptoms - constant sore throat, feeling of a lump in my throat and chest burning.  I occasionally get mild nausea if I eat anything too sugary but otherwise all ok and no ppis needed.  Hope this helps.

      Angie

    • angie43
      angie43 tata40402

      Posted

      Mr. Nick Boyle who is based in Kent.  He was the third gastro-enterologist I saw and did the third endoscopy discovering a haital hernia with Cameron's Erosions (ulcers) which the other two had missed!  
    • tata40402
      tata40402 angie43

      Posted

      Ok, i have a hiatal hernia also. Good to hear your doing well. I live in Nyc. Us. I hear so many stories of the surgery not going well. Glad to hear it was a success
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