How is Your LPR?

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Faith224
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Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 2:29 PM (GMT -7)   
Greetings,

For those of you with LPR, I was just wondering how many of you are on PPI's, which PPI you're on, how long have you been on it, and/or have you seen improvement? Are there any symptoms left? Do you get breakthrough symptoms? First, I was on prilosec with little to no success. Then I started taking prevacid, but played around with the dosage until three weeks ago when I started taking 60 mg, and now I am on dexilant. I am having breakthrough symptoms and am just looking for some encouragement/advice.

Thanks so much,

Faith

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/4/2011 2:45 PM (GMT -7)   
Hi Faith ... what exactly are your LPR symptoms and how long have you had them for? Do you notice any changes / improvements in your symptoms at all?

Neptunian808
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Date Joined Dec 2010
Total Posts : 86
   Posted 10/4/2011 2:49 PM (GMT -7)   
Hi Faith, ive had LPR for a year now, tried prilosec, lanzoprazole, nexium, reglan, domperidone, carafate but i felt no relief, i've seen a lot of GI's some say my problem is not even reflux others say its more than obvious that i have it but still they dont give me any solution, i just came back from a surgeon that told me he cant operate on me because i have a normal LES he agrees that i have reflux but he said he didnt know how to help me, im crying as im writing this, i dont wanna live with LPR anymore. I hope you can find a cure soon.

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 2:57 PM (GMT -7)   
Hey PPI-LESS,

I had LPR reflux since 2008 but was in remission for two years until this past July, when my symptoms began with excessive cough and throat clearing, which almost immediately stopped once I started taking Prevacid. I also belch excessively (have H. Pylori, not sure if this can cause this) and have post-nasal drip. I started playing around with the dosages thinking I could get off of the meds, big mistake! I kept feeling mucus in the back of the throat, and began taking one 60 mg dose of prevacid in the morning (I took two pills together in the morning because that's when most of my symptoms act up, and dividing the dose doesn't seem to be too effective for me). I had some breakthrough symptoms of the prevacid, and my gastro decided to switch me to dexilant (60 mg). Since yesterday, I have been experiencing throat clearing and coughing again, but nowhere as bad as it was before I started taking meds. I keep waking up with post-nasal drip and don't have any allergies that I know of. I'm now wondering if the prevacid was more effective or if the dexilant takes time to build up in my system.
Do you know of anything I can do for the mucus/drip?

Thanks so much,

Faith

Faith224
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Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 3:06 PM (GMT -7)   
Neptunian,

I wish I could give you a huge hug right now, because I feel the same way. I haven't undergone all the testing that you have yet, but feel it will be the same in my case. What are your symptoms? Since some of the Dr's say it's not reflux, did any of them say what it could be? Have you been tested for allergies? Along time ago, my Dr. told me I may not even have LPR, but that I can have chronic post-nasal drip (would love to believe that). Also, did you have anxiety before LPR developed? I have been finding really interesting research about this and will elaborate if this is what you do have. Did you undergo PH testing?

I'm so sorry for what you're going through, but know you're not alone.

Hugs,

Faith

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/4/2011 3:43 PM (GMT -7)   
Hi Faith and Neptunian .. hang in there .. things will get better .. just believe ..

Neptunian .. so do you think your symptoms could be "pepsin" related? The GIs in the US have now started to use pepsin as a valid cause of LPR and say that it could be a justification for undergoing fundoplication (even when the LES is otherwise normal).

Faith - Since I can not take PPIs/H2s - I've been trying a lot of natural things along with some benzos to see if the benzos can help calm the nerves down assuming the nerves are at least partially a cause here ....

I am not sure what I have LPR or GERD .. a bit of both .. I dont have any cough at all though (yet) - my current symptoms are:
- bitter taste in my mouth
- when I swallow it hurts around the vocal chords
- some post nasal drip
- slight achiness around the LES area
So, my symptoms are not severe but I am constantly being bothered by them ... and they have improved over the last several months (even without the PPIs) - but they are not going away ...

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 3:48 PM (GMT -7)   
PPI-Less, it's interesting that you brought up benzo's. I'm not sure if you heard of a Dr. Shipko, but he published original research about treating GERD with xanax. I believe he says that in patients with GERD/LPR & Anxiety, excess bile is behind the reflux and these symptoms are treated with xanax and carafate quite successfully. This is interesting to me because in addition to suffering with LPR, I also suffer from severe anxiety.

What natural things are you trying?

You're symptoms don't sound too bad, but I can definitely see why they would be bothersome. The PND is driving me nuts, I keep using saline.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/4/2011 3:59 PM (GMT -7)   
I don't have typical anxiety symptoms anymore (I did have anxiety back in Apr/May/June timeframe)
.. but could it be that anxiety from back in the summer is still causing the nerves to act up? Very confusing ..

My current natural regimen is as follows (these keep changing .. as I tried adding Zinc Carnosine, L-Glutomine etc. but had to take out as I felt they were causing my symptoms to get worse)

AM Routine
- Early AM: Tukmaria Seeds
- Aloe Vera
- Carrot + Cabbage juice
- Art of Living - Sudarshan Kriya Yoga
- breakfast/almonds
- Lions Mane Mushroom (2)

Ride-to-work
- DGL

10:00-11:30AM
- Slippery Elm

Afte Lunch
- sodium bicarbonate water
- Lions Mane Mushroom (2)
- Fennel seeds immediately after lunch
- Axia
- chew gum
- tulsi + water

Mid-Afternoon 2PM
- Slippery Elm

Ride-from-work
- DGL

PM-Routine
- Dinner 630PM
- Lions Mane Mushroom (2)
- Gond katira
- Fennel Seeds
- Axia
- chew gum

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 4:14 PM (GMT -7)   
If you don't mind me asking, what kind of anxiety symptoms did you have? Yes, I believe that although you may not be experiencing any anxiety symptoms now, it can be underlying (btw I'm studying to be a therapist which is ironic lol).

Thanks so much for sharing your routine with me, and I'm glad it's been helping you. Do you find any of the herbs/supplements you are taking to be more helpful than others?

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/4/2011 4:43 PM (GMT -7)   
My anxiety symptoms were: insomnia, tingling, numbness of the toes of the feet (left), ache in the left arm, dizziness, confusion - along with depression like symptoms (not wanting to start my day ... suicidal thoughts)

I attributed the cause of my anxiety to:
- PPIs and other drugs I was taking (suicidal thoughts were definitely due to gabapentin that I was on).
- Me discovering that the PPIs/H2s give me side effects. I felt that it was basically the end of the road for me .. as everywhere I read - I found that people manage their symptoms with these medications and that is the only "cure" of this condition (other than the surgical intervention....)

I am not entirely sure if the PPIs caused anxiety or not - since I continued to have the anxiety symptoms even up to 2 months after stopping the PPIs .. but it is possible that they triggered it .. and then it became a vicious circle ..

During those early months my GERD/LPR symptoms were much more severe .. they have definitely reduced and I am thankful for that .. but they are not going away .. sometimes I feel they are reducing and then suddenly one day they come right back ..

Regarding the herbs / supplements, I thought Lions Mane helped me some ... as I think my nerves are one of the prime causes of my problems .. probably inflammed or damaged etc. which is why I started to use Lions Mane in the hope that it will target my nervous system (I tried Alpha Lipoic acid and evening primrose oil as well .. but they give me some other side effects). I dont know about all these supplements .. DGL + Aloe Vera etc... they seem to soothe the tract ..but since they are not eliminating the source of the problem .. I feel they basically help clean up what acid does to the esophagus, throat, mouth ... so they are more of symptom reducers basically .. though I dont know if the time is healing me or these herbs / supplements are...

I am extremely scientific minded, fairly technical .. software engineer .. but I feel so incapable of understanding what is going on with my body ... it has been such a humbling experience ... good thing you are going to be therapist ... may be we all will need you to sort out the jumbled up thoughts we have ...

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 4:51 PM (GMT -7)   
Did you ever have any symptoms of anxiety prior to the use of medication? I think in my case, my LPR reflux is a result of my severe anxiety. It's like a catch-22 though, one causes the other to go nuts.

It's so nice to be able to talk to supportive people like you. This LPR can be scary and makes me feel lonely sometimes.

I think one day, it will go away...I really do. The body is a fantastic machine and I think it has the capability of repairing itself.
Feel Good,

-Faith

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/4/2011 5:07 PM (GMT -7)   
As soon as I realized that I have some form of acid reflux .. (self diagnosed myself by googling), I started to feel anxious .. and I got on prilosec OTC just about the same time .. then I was put on double dosage of PPIs the week after by my GI .. and it took me another 2-3 weeks before I realized I was getting side effects and that totally flipped me out .. then I got on nexium then on protonix (later also tried aciphex, prevacid) .... then on zantac and then on pepcid ac .. and by that time each and every med started to give me side effects. This is one reason several doctors think these side effects are psycho-somatic for me .. but I don't quite believe it .. there is something in these drugs that interacts with the nervous system I feel that causes my nervous system to start acting up ..

as far as LPR goes .. several qualified doctors tell me that it is not an easy thing to diagnose .. and there is no single set of rules that apply to all people .. we all are different .. so anything is possible ..
hang in there Faith .. I too believe that our bodies are capable of healing .. I am surely going to try more natural things .. more yoga .. breathing exercises etc. (google sudarshan kriya yoga and anxiety .. there are studies that claim it helps a lot it seems) .. I am taking this as a challenge life has thrown at me .. and I am determined to conquer it ...

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 5:17 PM (GMT -7)   
Interestingly, I visited an acupuncturist a few weeks back. He told me that I was suffering from liver stagnation, which results in excess bile, thus leading to reflux. He gave me chinese herbs that are supposed to relax the nervous system, I took them for a while, but then started worrying they would relax my sphincter. This is interesting because the research by Dr. Shipko, says the same thing, but he controls it with xanax and carafate. Have you been tested to determine which form of reflux you're suffering from?

It's funny how it works, isn't it? LPR exacerbates anxiety, and anxiety exacerbates LPR. Think about it, no organ in our body works separately--everything is connect. For example, I was just eating and I felt like I needed to clear my throat. Instead of getting anxious, I told myself that I'm fine and the urge stopped. Additionally, my first LPR flare-up came after a scary bout with anxiety. After several months, I stopped all meds and convinced myself I was fine, that there was nothing wrong with me, and that there was nothing I couldn't eat. Believe it or not, it worked! For two years, I was virtually symptom-free aside from some burping (I also have H-Pylori). In June, I transferred graduate schools to my dream school and was under so much stress that the LPR flared up all over again!!!

The mucus only bothers me when I pay attention to it, which is most of the time lol. so what you;re saying about anxiety doesn't surprise me!

Hang in there we are going to be ok!
Feel Good,

-Faith

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/4/2011 5:32 PM (GMT -7)   
I went through several tests earlier this year: endoscopy: normal / manometry: normal / ph-test: abnormal (diagnosed with GERD/LPR) acid - mine is surely acid and not bile as I can taste the acid in my mouth (bitterness).

Your symptoms also seem anxiety related .. 2 years symptom free and then back again .. wow .. but I am sure you'll be able to put this back into remission again .. do you take any meds for anxiety now?

Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/4/2011 5:40 PM (GMT -7)   
I really hope so...I don't remember it taking this long last time..but the problem is I feel like I am so much more educated about reflux this time around that I don't let myself heal...Or perhaps the medicine was more effective the first time around?

I'm not sure if I am refluxing bile either, but I never really feel any burning or anything. When my symptoms present, they come on with a cough and throat clearing..strange.

Why was your PH test abnormal?

I don't but I have an appointment with a psychiatrist tomorrow. I really don't like taking meds, but if it's going to help then I'll embrace them with open arms. I'm just considered about the PPI/SSRI or benzo interaction.
Feel Good,

-Faith

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/5/2011 3:10 AM (GMT -7)   
pH tests back in May were abnormal with plenty of reflux episodes in the throat (mostly in the upright position) and borderline in the esophagus .. I am getting these tests done again and will update on these when I have these numbers.

jasmine8
Regular Member


Date Joined Jan 2011
Total Posts : 69
   Posted 10/5/2011 9:19 PM (GMT -7)   
PPI-less,

I was reading your post and I wanted to let you know that I had a similar reaction to the PPI, so I don't think it's in your mind. I went through 8 PPIs and had the same reaction with all of the them. The main reaction was the tingling/numbness in my toes it spread up my legs and I had it in my hands and arm as well especially the left side of my body and dizziness and vision problems. The longer I was on the PPI the worse it got. I got off the PPIs and it got better (but it took a few weeks to get it out of my system). It also made me hypersensitive to anything I took. The rantinidine family made my reflux worse. My doctor said it was in my head and that NO ONE has reactions to PPIs because they are so safe (I'm with a different doctor now), but if you read the leaflet in your PPI box I had half of the allergic reaction precautions:
"Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); bone pain; calf pain, swelling, or tenderness; chest pain, numbness of an arm or leg, sudden severe vomiting or dizziness, or vision changes; depression; fainting; fast, slow, or irregular heartbeat; fever, chills, or sore throat; joint pain, tenderness, swelling, or warmth; red, swollen, blistered, or peeling skin; seizures; shortness of breath; unusual tiredness or weakness."

I enjoyed your daily regimen. Mine is similar except for that i save slippery elm for night time to protect my throat before I go to bed. I drink it unstrained as a tea. I also take aloe very twice a day 2 oz at when I first wake up and 2 oz at night mixed in the slippery elm. I don't know if apples help you or make it worse, but I drink a cabbage apple juice (from the juicer) that I like better than carrots for my stomach. I also found that juicing beets helps too, but of course nothing is a miracle. I've never tried axia or lions mane. I'll give it a try.
Thanks for your good ideas.

Jacket923
Regular Member


Date Joined Jun 2011
Total Posts : 27
   Posted 10/6/2011 10:26 AM (GMT -7)   
Neptunian, you most likely don't have acid reflux. You have been through every single PPI and your LES function is normal.

Does your throat feel better when you eat? If so, that is a indicator of a nervous system problem, not an acid problem. Go throw up a bunch of times and see how painful it is to swallow, thats how I found out that my LPR diagnosis was a crock of s$@t.

Do you frequently have that nasty acid taste on your TONGUE that you get after throwing up? Because you would if you have reflux.

Do you burp an insane amount? thats vagus nerve irritation, not acid reflux.

therefluxbadger
New Member


Date Joined Sep 2011
Total Posts : 10
   Posted 10/6/2011 1:28 PM (GMT -7)   
Jacket923, i feel certain my constant throat clearing and lump in throat feeling is lpr (although I'm still waiting for a gastroscopy and a ph test), but I don't tend to get an acid taste at the back of my mouth and my throat always feels better for a while when I eat. But my symptoms seem to fit so well with lpr that I'm sure they must be that rather than a nerve problem. They tend to be worse the day after drinking alcohol for example, and this sounds more like acid than nerve damage to me, so I think for some people lpr does ease with eating, probably because of the production of saliva. Not that I'm an expert, but that makes sense to me.

Jacket923
Regular Member


Date Joined Jun 2011
Total Posts : 27
   Posted 10/6/2011 3:11 PM (GMT -7)   
I had a post a couple months ago on here just click on my name if you want to find it and read it.

Anyways, alcohol is a carcinogen to your throat. It also acts as an anesthetic to your throat and irritates the vagus nerve, so that may be what you are experiencing.

My symptoms were primarily focused on one side of my throat as opposed to completely even. Sometimes I burped and I only really felt it on one side for some reason. So my doctor thought my throat was hypersensitive and prescribed me an antidepressant called elavil to calm down the nerve and let it heal.

I recently read an article by a leading laryngologist who basically said that he doesn't believe LPR is a valid diagnosis in the vast majority of people, that they may have nerve disfunction that could be treated. That laryngologist also said that people with the lump in their throat had nerve damage, and that it was always relieved by eating.

I digress......anyways, I got put on amitriptyline (elavil), and I went from burping about 200 times a day to burping 3 times a day. I purposely went and ate a 2,000 calorie meal at golden corral the day after I took the medicine and I didn't have a single disturbance to my throat. No burping, liquid irritation, burning etc.......and before the medicine I experienced seemingly horrible throat reflux after I ate a granola bar or an apple.

Can you think back to a certain exact day as to when this all started? If you can, do you really think that your acid reflux just decided to go from completely non-existent to terrible in a matter of one day?

Also, have you ever had an instance of heartburn in your life? Because if you haven't, I would bet anything that you don't have abnormal levels of acid reflux, you just have an hyper-irritable larynx/throat.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 10/6/2011 3:32 PM (GMT -7)   
Hi Jacket923 - Do you still take elavil - or did you just take it for a few weeks and then got off of it and are now asymptomatic?

Jacket923
Regular Member


Date Joined Jun 2011
Total Posts : 27
   Posted 10/6/2011 4:08 PM (GMT -7)   
Its been 2 months and I am still on it.

Apparently throat nerves take a while to heal, and they are very sensitive. The thing is, my throat is still hyper-sensitized to an extent, so I can't go scream or smoke or eat spicy food (set my throat back to square one for some reason......) without my throat getting a little irritated and delaying the healing process, but nowhere NEAR what it used to be. I am working hard at trying to have my throat heal up all the way by completely avoiding those three things (I don't smoke but I hang around people who do), and as of today I am pretty close......we'll see.

I am taking my protonix in addition to that, because I read an article that said that you must minimize all irritants for the nerves to heal (reflux, allergies, smoke etc).

therefluxbadger
New Member


Date Joined Sep 2011
Total Posts : 10
   Posted 10/7/2011 12:03 AM (GMT -7)   
Hi Jacket,

I remember noticing around a year or so ago that after a night of heavy drinking with friends a phlegmy throat the day after, although it was fairly occasional. It seems to have occurred more regularly since then, and now I've had the phlegmy throat, sometimes sore too, for around three or four weeks constantly. There was an occasion back in June this year where I swallowed a piece of hot chicken too quickly and really hurt my throat and the next day it was awful and it does seem to have become worse since then (but still on and off until the last few weeks). I don't get a lot of heartburn - only once in a while, but I do get odd feelings in my chest, stomach and back so do think I have some form of acid reflux (I was put on PPIs before I really even noticed my throat symtpoms). But I do find what you're saying interesting about the nerve damage, so I will mention it to my Dr (normal GP) when I see him in a couple of weeks and see if he'll prescribe me amitriptyline to see if it helps at all (I assume it's available in the UK as well, which is where I am). I've just come back from a week in France where I couldn't really avoid the cheese and wine but now I'm back I'm cutting out booze and caffeine to see how I get on, and I've just ordered Dr Kaufman's Dropping Acid book so I will give that a go and see if my diet helps me as well.

Jacket923
Regular Member


Date Joined Jun 2011
Total Posts : 27
   Posted 10/9/2011 2:43 PM (GMT -7)   
Yea, I am not a doctor (aspiring one though...;)..), so I won't attempt to diagnose you or say you do or do not have something.

I will say though that I have read of several stories of LPR that have begun after a long night of drinking alcohol......and drinking alcohol irritates the nerves in the throat. So who knows, it could be reflux but it could be this. Trying out the amitriptyline may be worth a shot, since its a cheap and very safe medicine that has been used since the 1960s. I was able to tell after my first dose of 25 mg that it worked, there was no chance in hell that it was placebo.

Here is an article which you can read more about nerve disorders of the larynx, and you can print it out if you feel like your doctor would actually listen to you.

Good luck

http://www.fauquierent.net/cough.htm

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 10/9/2011 6:22 PM (GMT -7)   
Faith

i had gerd for more than 10 years but the LPR is a relatively recent change. the lpr started about two years ago. what changed?

i got older !...i was eating dinner later at night, and i had gained weight and became a bit mores sedentary after an operation six months before. did these events figure in to my LPR...i can only guess

the lpr started coincident with me being awakened at night choking on reflux

i took huge quantities of otc ant acids...and as things got worse saw doctor after doctor an got test after test and was placed on H2s which were some help but still i was experiencing too much burn and the reflux was getting all the way up into my airway.

next came the PPIs first protonix and then omeprazole...they both worked good but soon after starting..maybe two weeks or less,i began feeling light-headed, having muscle spasms especially in my back, i felt nausea, and experienced lots of lower abdominal pains. (had switched from one PPI to another just to avoid these side effects, but no luck)

against my docs wishes i stopped taking PPIs and slowly one by one the side effect pains and problems subsided...it took several months for the light-headedness to completely go away and to this day im not sure if that symptom was directly PPI related or a result of increased anxiety from all the medical problems i was having

i guess i could try the PPIs again and see what if any of these symptoms come back !!!

and i may just have to do that some day cause i continue to reflux and have pain...not as bad as before the meds but still have symptoms of reflux-LPR

the things that have helped me the most after the meds are:

raising up the head of my bed,

eating smaller meals...( i eat 4 or 5 meals a day that are less than half the size of what i used to eat)

i eat more vegetables less meat... way less meat...

i exercise and have lost weight (this i believe was a big help)

i avoid trigger foods ( a list complied form suggestions here at healingwell and my trial an error experience...

and i never eat and then lay down..always let a few hours go by after diner before bed...no late night snacks

as for the break-thru symptoms you are experiencing...welcome to the club...i guess many i not most of us have bad days and often its difficult to figure out rhyme nor reason as to what w did or didnt do that allowed this to happen

i feel that for myself, my emotional state is at least 33% of my problem..if i can avoid high anxiety situation i do way better

of the things ive listed above, for me personally, i would rank small meals and elevating ones bed very high on the list of things that have helped..that and trying to find calm and avoid waves of stress

hang in there and dont give up! yeah gerd lpr is awful and many of us feel like we have been beat up to the max...its true..but hey....we are in this together!

best wishes
mock turtle
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