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Old 05-19-2011, 09:18 PM   #1
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emwitty HB User
help, PVVN/ LSN?

Hi,
I was diagnosed 4 years ago with LPR. Like most people diagnosed with LPR I was put on a double dose of ppi 2xs daily, made drastic modifications to my diet as well, as lifestyle. It persisted for 6 months, I was literally bed ridden. Finally I got put on klonopin. That within a month helped me improve vastly so I could resume my normal life. I went off of it and nexium gradually and was symptom from fot 4 years.I ate/ drank whatever I wanted and never had any symptoms.


Then about 3 weeks ago a very stressful event happened and voilà ... LRP returned. Of course I went back to my 2xs Nexium (80mg) and my strict diet as well as my supplements. I have all the classic LPR symptoms, soar throat, weak voice, sometimes refereed ear pain and trouble swallowing. But my biggest and worst symptom is breathing. It is a 24/7 issue where I get no relief. Besides it being difficult, I feel like my throat is constricting and an elephant is siting on it. I have since been back to several doctors. The ENT said yes your throat and larynx are burnt badly. The GI wants to do an endo next week. And I went to a GP. I asked for klonopin as that is what helped last. They really seem (all of them) against taking any benzo. I again am totally out of it, the breathing and pain have taken over my life and the doctors just want to shove the purple pill down me and say wait 6 or more months.

Well... it's what helped me more then any nexium of dietary change.
I am beginning to think its more a neurological/ psychological thing. Not to say I don't have LPR but... I am curious why my breathing/ nerves in my neck completely tense/ over burping (i don't have a cough though) are more an issue to me.

I would like to know what are the main symptoms of PVVN/ LSN?
What doctor would you go to, to get the diagous? I'm at a loss for that.
How do they diagnose you?
What is the treatment?
And has anyone been diagosed with it and gotten better with klonopin or something similar?

Just curious about these two conditions that I seen mentioned yet know nothing of.
thank you

 
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Old 05-20-2011, 02:09 PM   #2
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Re: help, PVVN/ LSN?

Well, there are a few reasons the Klonopin might help your throat symptoms:

1) Reduce anxiety. Stress does play a role in all this stuff.

2) Treat problem nerves in the throat area.

3) Actually stop reflux. Contrary to what the makers of that purple pill would like you to think, reflux is not caused by having acid in the stomach. Everyone has acid in their stomachs, not all of us have reflux. Actual reflux is caused by muscles in the digestive tract not working well, and some neurological drugs may help these muscles work better.

I suggest you do the scope. It might shed some light on exactly what's going on here.

 
Old 05-20-2011, 03:17 PM   #3
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tclarklpr HB Usertclarklpr HB Usertclarklpr HB User
Re: help, PVVN/ LSN?

Quote:
Originally Posted by emwitty View Post
Hi,
I was diagnosed 4 years ago with LPR. Like most people diagnosed with LPR I was put on a double dose of ppi 2xs daily, made drastic modifications to my diet as well, as lifestyle. It persisted for 6 months, I was literally bed ridden. Finally I got put on klonopin. That within a month helped me improve vastly so I could resume my normal life. I went off of it and nexium gradually and was symptom from fot 4 years.I ate/ drank whatever I wanted and never had any symptoms.


Then about 3 weeks ago a very stressful event happened and voilà ... LRP returned. Of course I went back to my 2xs Nexium (80mg) and my strict diet as well as my supplements. I have all the classic LPR symptoms, soar throat, weak voice, sometimes refereed ear pain and trouble swallowing. But my biggest and worst symptom is breathing. It is a 24/7 issue where I get no relief. Besides it being difficult, I feel like my throat is constricting and an elephant is siting on it. I have since been back to several doctors. The ENT said yes your throat and larynx are burnt badly. The GI wants to do an endo next week. And I went to a GP. I asked for klonopin as that is what helped last. They really seem (all of them) against taking any benzo. I again am totally out of it, the breathing and pain have taken over my life and the doctors just want to shove the purple pill down me and say wait 6 or more months.

Well... it's what helped me more then any nexium of dietary change.
I am beginning to think its more a neurological/ psychological thing. Not to say I don't have LPR but... I am curious why my breathing/ nerves in my neck completely tense/ over burping (i don't have a cough though) are more an issue to me.

I would like to know what are the main symptoms of PVVN/ LSN?
What doctor would you go to, to get the diagous? I'm at a loss for that.
How do they diagnose you?
What is the treatment?
And has anyone been diagosed with it and gotten better with klonopin or something similar?

Just curious about these two conditions that I seen mentioned yet know nothing of.
thank you
Hi - - You and I share the same conditions:

1) I have been diagnosed with PVVN, vocal cord paresis and LPR (all the tests, PH, Esophogeal Manhometry, LEMG, etc.). - all of this triggered my stress/anxiety at work (I am sure of it) and then made worse becuase I had stress/anxiety over my symptoms... the old snowball effect over a 6 month period since Decemver... only 2 weeks ago after near total body shutdown have I gotten serious about fixing the problem
2) On 2xPPI - and was prescribed Klonopin (I did not take well to the Klonopin because of the fatigue.. made me feel like I had the flu at work)
3) My diet is el perfecto - for real (I only eat PH >5 so my throat can heal... I have been at this for two weeks)

Currently, I am experiencing a feeling like someone is grabbing my throat below my Adams Apple and placing their finger right in that area below the Apple but above my chest (where there is a little indent). When I drink water, I sometimes feel like that area is trapping the liquid. However, when I eat.. all is well in the world. I have noticed that I burp a lot and these burps seems to correlate with my reflux events... not hard burps, soft bubbling feelings that creep up past my UES. My UES resting pressure and everything is good according to the tests, so god knows what is causing the spasm. The Docs don't know either...

My breathing is off an on, but at times I feel like I have asthma.. but I have been tested by a Pulm. twice, and there is no asthma. It's as if it is hard to take a deep breath. When I exercise, however, again.. all is well in the world.

Final prevailing condition is a feeling at times when I swallow like I am choking on my own tongue.. a very nasal feeling in the back of my throat... like I have a cold, but I dont. My uvula looks like a cave formation.

My PPI therapy and diet seem to be helping in terms of throat pain... I have less mucus and less white tongue which was bad all day along just a couple of weeks ago. The severity of my burping has also slowed a bit, but it is still there off an on all day long. But I struggle to attack the tightness and breating issue. To replace the Klonopin (which did provide some relief in this regard) I have been using Xanax - no more than 2 .5mg pills a day... and that takes the tension off my throat and does not make me depressed and as slow. I am sure you are correct (and this is confirmed by my ENT who is working with me on this), that a benzo, or another drug that supresses the central nervous system - elavil, neurontin, Lyrica, etc. can help. Especially given the PVVN. If you search this site you will see plenty of folks using this stuff - see my posts, or Seeking Sunrise posts. Further, some say that using a muscle relaxant like Flexiril may be worth a shot too to take a little out of the tension. I am also going to a physical therapist to workover my upper body... this helped substantially with the ear pain and popping.

I visit my ENT (who is very respected in the LPR space) again on Monday for my two week checkup since treatment started, I will be happy to let you know what she says in this regard...trust me, I'll be asking and begging for answers. Thanks

 
Old 05-20-2011, 04:28 PM   #4
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emwitty HB User
Re: help, PVVN/ LSN?

Yes, It stinks and I know (almost) exactly what you are going through.
I tried to get an appointment with my GP but couldn't so I saw someone else who refused to prescribe a benzo. My other doctor's say yes you need to be taking one, go see your GP. Argh! My GP has been left a message by one of my doctors and by myself. Still yet to hear from her. So as of now no relief from the anxiety of my breathing problems. Not sure who to go to now for it. I am not trying to abuse any drug. Last time I had one was a period of 2 months over 4 years ago. I went off of it without any problems when my breathing resolved.

When you went to your Pulm did they bring up the idea of stenosis at all? and or check to see if you have it? Have you also been checked for a hiatal hernia? I know they can also cause breathing issues. I have a very small one so I doubt that is my issue. How about esophageal spasms? When you have problems breathing do you wheeze or make a sound?

I am having breathing tests next week. I'm certain it's not asthma because my problems are just in the inhaling and feeling constricted in that way. I like you also feel like "someone is grabbing my throat below my Adams Apple and placing their finger right in that area below the Apple but above my chest".

I've gotten most of my other symptoms under control, the typical LPR ones. It's really my non-stop breathing problems. Like I can't get a full breath. It never goes away for me. And then the feeling of airway constriction. I believe its a chicken or egg thing. Maybe it started by stress, then it manifested physically which is creating more stress.

I have a bravo scheduled for monday with a GI.

The breathing is driving me mad.

Yes, keep me posted on what your ENT says since, we sound like we have similar symptoms.

Quote:
Originally Posted by tclarklpr View Post
Hi - - You and I share the same conditions:

1) I have been diagnosed with PVVN, vocal cord paresis and LPR (all the tests, PH, Esophogeal Manhometry, LEMG, etc.). - all of this triggered my stress/anxiety at work (I am sure of it) and then made worse becuase I had stress/anxiety over my symptoms... the old snowball effect over a 6 month period since Decemver... only 2 weeks ago after near total body shutdown have I gotten serious about fixing the problem
2) On 2xPPI - and was prescribed Klonopin (I did not take well to the Klonopin because of the fatigue.. made me feel like I had the flu at work)
3) My diet is el perfecto - for real (I only eat PH >5 so my throat can heal... I have been at this for two weeks)

Currently, I am experiencing a feeling like someone is grabbing my throat below my Adams Apple and placing their finger right in that area below the Apple but above my chest (where there is a little indent). When I drink water, I sometimes feel like that area is trapping the liquid. However, when I eat.. all is well in the world. I have noticed that I burp a lot and these burps seems to correlate with my reflux events... not hard burps, soft bubbling feelings that creep up past my UES. My UES resting pressure and everything is good according to the tests, so god knows what is causing the spasm. The Docs don't know either...

My breathing is off an on, but at times I feel like I have asthma.. but I have been tested by a Pulm. twice, and there is no asthma. It's as if it is hard to take a deep breath. When I exercise, however, again.. all is well in the world.

Final prevailing condition is a feeling at times when I swallow like I am choking on my own tongue.. a very nasal feeling in the back of my throat... like I have a cold, but I dont. My uvula looks like a cave formation.

My PPI therapy and diet seem to be helping in terms of throat pain... I have less mucus and less white tongue which was bad all day along just a couple of weeks ago. The severity of my burping has also slowed a bit, but it is still there off an on all day long. But I struggle to attack the tightness and breating issue. To replace the Klonopin (which did provide some relief in this regard) I have been using Xanax - no more than 2 .5mg pills a day... and that takes the tension off my throat and does not make me depressed and as slow. I am sure you are correct (and this is confirmed by my ENT who is working with me on this), that a benzo, or another drug that supresses the central nervous system - elavil, neurontin, Lyrica, etc. can help. Especially given the PVVN. If you search this site you will see plenty of folks using this stuff - see my posts, or Seeking Sunrise posts. Further, some say that using a muscle relaxant like Flexiril may be worth a shot too to take a little out of the tension. I am also going to a physical therapist to workover my upper body... this helped substantially with the ear pain and popping.

I visit my ENT (who is very respected in the LPR space) again on Monday for my two week checkup since treatment started, I will be happy to let you know what she says in this regard...trust me, I'll be asking and begging for answers. Thanks

 
Old 05-20-2011, 04:38 PM   #5
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Join Date: May 2011
Location: chicago, il
Posts: 16
emwitty HB User
Re: help, PVVN/ LSN?

Thanks, I suspect I do need the scope. This go round I have only had a camera several times look down as far as my larynx. Not surprisingly, it showed significant redness, and scaring. I wonder about my esophagus. a GI is doing a Brovo on Monday. A scope would seem a logical step to take.

Anyway, I do agree that stress is a major contributor to these symptoms and these symptoms create more stress therefore, to stop the cycle the anxiety should be treated.

I'm going to my therapist to do biofeedback. She says my brainwaves are pretty calm but, they definitely were not on the day my LPR resurfaced and surly not in the moments when my breathing is at it's worse. She isn't a psychiatrist though so I need to find another doctor for anxiety medication.

Thank you for your time and words.

Quote:
Originally Posted by janewhite1 View Post
Well, there are a few reasons the Klonopin might help your throat symptoms:

1) Reduce anxiety. Stress does play a role in all this stuff.

2) Treat problem nerves in the throat area.

3) Actually stop reflux. Contrary to what the makers of that purple pill would like you to think, reflux is not caused by having acid in the stomach. Everyone has acid in their stomachs, not all of us have reflux. Actual reflux is caused by muscles in the digestive tract not working well, and some neurological drugs may help these muscles work better.

I suggest you do the scope. It might shed some light on exactly what's going on here.

 
Old 05-21-2011, 04:10 PM   #6
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Re: help, PVVN/ LSN?

I think you should take klonopin because it worked last time. The nexium is going to do nothing (like last time). Go to a doctor, tell the story of last time, and just don't give in. Tell him plainly, you won't take the nexium because it never worked in the past. If a doctor won't give you klonopin, I guess it's time to look at other options for procuring it.

I think you have PVVN/LSN. The symptoms are the exact same as LPR. In my opinion, half the people taking ppis should just be taking pain killers/cns depressors/benzos/anti-depressants. PVVN is proven by the ENT electrically zapping your nerves in your throat with a needle. I think you can safely assume you have it rather, than GERD, as what kind of GERD behaves like that and responds positively to a benzo?

 
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