LPR - nerve drugs instead of ppis?

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maximus808
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   Posted 12/27/2011 3:59 PM (GMT -7)   
Have any of you gotten relief from taking nerve drugs for lpr? Like Lyrica or Neurontin?

PPI-LESS
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   Posted 12/27/2011 4:20 PM (GMT -7)   
Hi Maximus,

I was prescribed Gabapentin (neurontin) for the same reason(s) back in the spring of this year. It helped somewhat (I think) - however, I could not stay on this drug due to side effects (depression, suicidal thoughts to name just a few) - although a lot of people do seem to be able to tolerate this without such problems. I believe it does help some people with reflux (there was one person on these boards who claimed a lot of success on neuro-drugs for his LPR/GERD). I think that for those people for whom the PPIs don't work and the symptoms are more cough and exclusively laryngo-phrangeal oriented and when the symptoms triggered from a viral infection causing possible nerve damage, these nerve drugs indeed might do the trick. However, statistically - much fewer set of people fall into this bucket in my opinion.

Anyway, my LPR symptoms have improved on their own .. but the GERD symptoms still remain - although they are much better than what they were back in spring/summer - they still are quite persistent. I am going through another round of tests to see if I can be a candidate for surgical intervention or not. I'll know in a few days.

I was wondering if you decided to go with Linx (Italy) or not. If not, then are you still considering Nissen or TIF?

maximus808
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   Posted 12/27/2011 4:23 PM (GMT -7)   
Hey Ppiless,

I have decided to go through this neuropath way first before surgery. I'm going to meet with my doctor today to discuss this and see what he thinks. Surgery will be my last option. I myself wasnt totally convinced how much the linx would help those with lpr.

maximus808
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   Posted 12/27/2011 4:25 PM (GMT -7)   
Did you see Jamie Koufman and she prescribed these meds? Do u think if you could tolerate them, you would get better on the nerve drugs?

maximus808
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   Posted 12/27/2011 4:27 PM (GMT -7)   
I find it so odd every lpr story happens from a sudden onset day. We all can remember the day it happended........I hope this is a neuro thing that can be resolved or treated

PPI-LESS
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Date Joined Apr 2011
Total Posts : 375
   Posted 12/27/2011 4:40 PM (GMT -7)   
Yes, I saw Dr. Koufman back in May/June and she was the one who prescribed neurontin. Are you going to see her as well?

If the root cause is a poorly functioning LES causing reflux (acid or other juices) into esophagus and throat, any surgical procedure that can tighten the LES - should help in my opinion. In the cases when one can clearly tell that LES is not performing well - hernia, low pressure in LES etc, it is quite clear that surgical intervention will fix this thing.

However, if testing does not reveal anything conclusive about the LES and if there are no heartburn / GERD like symptoms - and only laryngo-phrangeal symptoms .. then things get tricky and the doctors / surgeons can not be sure that the surgery can fix things and then they get reluctant to perform the surgery. In this case, the nerve drugs are surely worth a try.

In my case, the tests are not revealing enough reflux and the tests seem to indicate a normal LES as well - although I do experience GERD like symptoms (heartburn, acidic taste in my mouth, throat sensation during swallowing etc.).

My symptoms have changed over time. Earlier this year they were certainly more LPR like and hardly GERD like .. so I was convinced I had nerve damage .. but now my symptoms are more GERD like, so I am thinking I have mild/moderate GERD that is addressable with the PPIs if I could tolerate them. However, since I can not tolerate PPIs or even the H2s, the only options I have are:
1) Use natural means to control it OR
2) Think of going for TIF/Nissen/LINX to get more permanent relief.

So, I don't think nerve drugs would help me - given where I am at this point in time.

maximus808
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Date Joined Sep 2011
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   Posted 12/27/2011 4:43 PM (GMT -7)   
I see, I tried ppis and h2s but they were not helpful in relieving symptoms. I also have a normal pressure les...which made things even more confusing....let's hope these nerve drugs help a little

maximus808
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/27/2011 4:46 PM (GMT -7)   
Isn't it odd lpr suffers have a lot more upright reflexes and normal les pressures.....there has to be more to this.....

PPI-LESS
Regular Member


Date Joined Apr 2011
Total Posts : 375
   Posted 12/27/2011 4:47 PM (GMT -7)   
Then, there is NERD of course - where very little amount of reflux causes excessive symptoms. This is usually addressable with anti-depressants and one member here (WJF I believe) has found success with it.

Have you tried anti-depressants yet?

Dr. Koufman had me get on some of those as well. They helped somewhat .. but did not cure .. and of course I could not stay on these drugs either (they start giving me back-pain! Go figure!)

maximus808
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/27/2011 4:50 PM (GMT -7)   
I'm on lexapro now....it doesn't seem to help the symptoms of lpr though....I can't even tell if it's helping the mood. I assume everyone with lpr has some form of depression since no doctor can really relieve people of their symptoms.....

PPI-LESS
Regular Member


Date Joined Apr 2011
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   Posted 12/27/2011 5:00 PM (GMT -7)   
There are several LPR patients who do find relief on double dose PPIs - although apparently it takes much longer for the LPR symptoms to resolve.

In fact, this is a standard treatment for LPR: 6 months on double dose PPIs and then ramp down to see if the symptoms return or not. For some patients they can get off the PPIs and are symptom free and then take the PPIs on an as needed basis - however, others then need to be on these for long term .. and yet others would need to find alternate solutions if the PPIs stop working.

I do believe that if I could tolerate the PPIs, I would've been symptom free by now - as I think I do have acid reflux that is triggered by transient relaxations of the LES. However, looks like my body is too sensitive to the meds ... so I'll have to find alternate solutions ..

maximus808
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/27/2011 5:12 PM (GMT -7)   
Did dr. Koufman explain how the nerve drugs could help those with lpr?

PPI-LESS
Regular Member


Date Joined Apr 2011
Total Posts : 375
   Posted 12/27/2011 5:39 PM (GMT -7)   
She did not - but I'd read up on that even before I went to her. In fact, the reason I went to her was because I wanted to try some other non-standard means of diagnostic and treatment modes.

These neuro drugs are typically tried when one has been diagnosed with LSN (laryngeal sensory neuropathy). Most ENTs won't try this without first ruling out reflux as a cause though. If you haven't read this article (and the rest of the articles on this website, do read them):
www.fauquierent.net/cough.htm
This basically explains how throat / cough symptoms could be because of other causes - other than reflux and if they are due to nerve damage, then neuro-drugs can help.
LSN can give you LPR like symptoms.

Other than LSN, another theory here is that nerve damage could *cause* reflux. Vagus nerve controls a lot of the GI activity including the LES relaxations .. and if there is damage to parts of this nerve, then the LES can start to relax at random times. I was certain that I have some form of this damage since I could not figure out why I started to reflux out of blue (I am extremely healthy otherwise, 150 pounds, 5 ft. 7 inches tall, eat very healthy, work out, used to run 2-3 miles / day and 42 years old). Plus, I did not have any cough at all (so ruled out LSN).

Anyway ... the cause of my reflux still remains a mystery since I do have a normal LES. However, thankfully my reflux has gone down considerably (it could be the diet or yoga that I do .. but it could simply be passage of time). Now, I need to see if this would ever go away entirely on its own or if I should try to see if surgery might help ...

maximus808
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Date Joined Sep 2011
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   Posted 12/27/2011 7:13 PM (GMT -7)   
Ok, I got my script for Lyrica 75 mg twice a day. My doc thinks its psychosomatic but gave me the Lyrica. I'll keep you posted.

PPI-LESS
Regular Member


Date Joined Apr 2011
Total Posts : 375
   Posted 12/27/2011 7:35 PM (GMT -7)   
If you are able to take the drugs, doctors are going to experiment with as many things as they can:
- PPIs/H2s (they've already tried and your symptoms didn't go away)
- Anti-depressants (they are trying now - lexapro)
- Neuro-drugs Neurontin/Lyrica etc. (they are trying now - Lyrica)
Other drugs here that they can try I guess include: Reglan etc.

Have you tried Gaviscon (from UK)?

If PPIs/H2s don't work for you, then the question is - is there anything other than acid that is causing the symptoms or not. If Gaviscon helps, then the surgery will help too. If even Gaviscon does not help, then it may not be the LES / reflux (acid or non-acid) at all - in which case surgery becomes risky as it may not solve the problem at all.

I thought you do get acid/bitter taste in your mouth? Do you not? What exactly are your symptoms these days?

maximus808
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Date Joined Sep 2011
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   Posted 12/27/2011 7:40 PM (GMT -7)   
Yes I have tried gaviscon with no help. My symptoms are mainly a burning vapor feeling from my stomach to my mouth. Symptoms are brutal. Let's hope Lyrica helps a little...

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 384
   Posted 12/27/2011 7:54 PM (GMT -7)   
Maximus --

Have you been tested for eosinophilic esophagitis (biopsy during EGD)? Symptoms mimic GERD, and can often be found together, as one condition compounds the other.

I can tell you, uncontrolled -- the EoE can become quite uncomfortable, and can trigger other sympathetic issues.

-Bruce

maximus808
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/27/2011 7:57 PM (GMT -7)   
No I haven't been tested for that....biopsy said negative for Barrett's....

mock turtle
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Date Joined Mar 2011
Total Posts : 467
   Posted 12/27/2011 8:33 PM (GMT -7)   
maximus
ppi-less

i read with great interest your discussion on this topic

i have had some success with an over the counter GABA agonist but im reluctant to name it because i dont want to potentially lead others to harm.

i take it before holiday meals, gatherings, family events where food is a big deal and i tend to weaken and eat a "normal" meal portions...which is over eating for a person like me who has LPR

on the internet many report that this "supplement", which can be purchased in many vitamin stores, is habit forming, and has a similar pharmacological action to benzos

so again i dont take it on a regular basis

i have read that the pharmacological action of neurontin and pregabalin may be similar to this gaba agonist but, more recent research suggests there are differences...im just not sure.... but all these medications seem to noted for "calming" down the nervous system

many months ago i reported that i experienced less reflux on some anti anxiety medication i was taking, but most of the authoritative sources i could find on the internet said these anxiolitic drugs weaken the LES and increase GERD

the entire issue has me very confused and, so again, i dont want to risk harming people so i refrain from naming names

what i would say is if a person feels that stress or anxiety contributes to GERD-LPR then talk to your doctor and with supervision look at the kind of medications that you guys are talking about.

my guess is that for a small portion of people who have gerd-LPR anxiety may be a contributing issue

i also guess that for many who have gerd anxiety is a non issue.... and so pursuing anxiolitic medications could actually do more harm than good if that drug, supplement or medication weakens the LES

so people must talk to their doctors about this before making any decisions

one size does not fit all and i hope all who suffer from gerd get professional medical advice before jumping to a conclusion that anxiety reduction is a treatment for reflux...it might be or..... it darn well might not be!

i wish you all improving health in the new year
best wishes
mock turtle

PPI-LESS
Regular Member


Date Joined Apr 2011
Total Posts : 375
   Posted 12/27/2011 8:50 PM (GMT -7)   
Thanks Mock Turtle,

I know exactly which supplement you are talking about. I don't use that supplement but have used a benzo (klonopin) instead. I actually do benefit from klonopin myself - so I do take them occasionally. Now, in my case - and I am suspecting in your case too .. the tLESrs are being reduced by the benzos or other anti-anxiety meds and so our reflux symptoms reduce.

However, in the case of maximus - I am not sure if LES is the cause or not - since things like gaviscon don't help him. However, I agree that he should definitely try out a benzo to see how he does on them. If they help him, then at least he can feel more confident about getting the surgery done.

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 12/27/2011 10:24 PM (GMT -7)   
jamaica

what reason would there be to believe there is a lost opportunity?

PPIs will work to reduce the parietal cell production of hydrochloric acid whether a person takes them in the first days they are diagnosed with gerd or 10 years later

i know...i had gerd for more than a decade before taking PPIs and after starting omeprazole my stomach acid was reduced to a point that i did not burn...period

i cant guarantee that result for all ....but my case is the usual scenario from what i am told by my doctor and people who comment here

LPR involves damage to very sensitive tissues way up high in the throat, so it takes time for these injuries to heal, but heal they can, given protection from acid and time.

acid is one part of the problem, other things that get refluxed up the throat can also add insult to injury so sleeping inclined, head high and eating smaller meals which reduce stomach distention and therefore reflux is a big help.

(eat smaller meals ! ! ! 4 or 5 smaller meals a day instead of 3 bigger meals !)

sleep the first half of the night in an upholstered chair that does not recline more than 45 degrees if you can! then go to bed at 2 or 3am if you happen to wake up...your bed should be inclined too, stick some books under the posts under the head board)

it seems to me you are experiencing a lot of anxiety over reflux. am i wrong? you are not alone...believe me worry, lots of worry, is the rule not the exception for people like us who experience these chronic problems and pain.

believe me the odds are greatly in your favor that you body can heal...there are no guarantees, but my throat was so burn that i could not talk...my vocal chords were toasted...and i healed a lot

but i tell you truly, try to make the best use of standard medicine, professional advice from your doctor and give healing a chance because worry sometimes...often.... is my worst enemy and maybe yours too!

and so i would encourage you to know that you are not alone and you can heal given a reasonable time.

hang in there
i know its tough
best wishes
mock turtle

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 12/27/2011 10:30 PM (GMT -7)   
PPI-LESS

its clear you and i share experience and-or knowledge of the benzo and the otc gaba agonist im talking about...you are well informed and i agree with your analysis above

i so wish medicaions never had side effects...

but side effects....thats why people must talk to their doctors and make informed decisions and not just jump at what they read or hear about

best wishes
mock turtle

kevinla
Regular Member


Date Joined Dec 2005
Total Posts : 151
   Posted 12/28/2011 12:14 AM (GMT -7)   
maximus808 said...
I find it so odd every lpr story happens from a sudden onset day. We all can remember the day it happended........I hope this is a neuro thing that can be resolved or treated


Yes. I remember the day it happened to me.

My throat problems are due to one of two reasons. Two events happened that night that could be the cause.

1> I drank scotch that night. Scotch has always burned my throat. I recently had some stomach problems.

2> I kissed a woman that probably had a virus.





maximus808 said...
Ok, I got my script for Lyrica 75 mg twice a day. My doc thinks its psychosomatic but gave me the Lyrica. I'll keep you posted.


Let us know please.

Did your doctor find redness in your throat? My psychiatrist proposed it is in my head.

maximus808 said...
Yes I have tried gaviscon with no help. My symptoms are mainly a burning vapor feeling from my stomach to my mouth. Symptoms are brutal. Let's hope Lyrica helps a little...


I have pretty much the same symptoms. I was thinking about trying Gaviscon, but /i live in the US.

Post Edited (kevinla) : 12/27/2011 11:52:16 PM (GMT-7)


PPI-LESS
Regular Member


Date Joined Apr 2011
Total Posts : 375
   Posted 12/28/2011 6:15 AM (GMT -7)   
Mock Turtle,

Have you not considered any surgical intervention yet - TIF or Nissen (or Linx) ? If not, I'll be curious to know your reasons.

Thanks

lanab
Regular Member


Date Joined Nov 2011
Total Posts : 136
   Posted 12/28/2011 8:31 AM (GMT -7)   
maximus808 said...
I find it so odd every lpr story happens from a sudden onset day. We all can remember the day it happended........I hope this is a neuro thing that can be resolved or treated


Yes very strange indeed, it all just starts one day, all hell breaks lose.

PPI-LESS said...
br />I do believe that if I could tolerate the PPIs, I would've been symptom free by now - as I think I do have acid reflux that is triggered by transient relaxations of the LES. However, looks like my body is too sensitive to the meds ... so I'll have to find alternate solutions ..


You will get there eventually, you and I share the same problems not tolerating these drugs, i am hanging in there without PPIs, it can be done, i am sure of that, PPIs in my opinion makes more harm than good in some patients.

Post Edited (lanab) : 12/28/2011 7:34:31 AM (GMT-7)

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