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Old 04-10-2011, 06:40 AM   #1
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Sudden onset LPR - could this be neuro?

34 years of age and new to the forum - was perfectly healthy - exercised 5 days week, eate pretty well. Some anxiety over work, but nothing out of the norm for NYC. In December 2010, big night of drinking with work folks to celebrate -the next day, my life immediately changed.

Excessive burping, tension in throat, shortness of breath. No heartburn. I have visited GI (scope showed minor GERD symptoms). Dexilant 60 mg. Without relief, visited ENT, Allergist, Pulm., etc. Currently on 60 mg Dexilant, 300 mg Zantac at night, Nasonex. ENT pictures of throat showed bumpy tongue and evidence of impact of movement passed the UES - thus the LPR diagnosis. To make matters worse, developed severe tension in the jaw sometimes limited mobility) and pain in the right ear... or at times, stuffiness like walking off an airplane. ENT suggested TMJ - saw TMJ specilist. Just starting mouth appliance and PT. My diet for 2 months has been VERY clean and I exercise at least once a day sometimes two. I should also mention that I was heavy into lifting weights only one year ago I weighed 210 lbs at 5' 9'' with limited body fat (no steroids - but lot of whey protein and eggs). I currenlty weigh 168 lbs with most of the loss over recent months. I feel like my body is out of whack, but my cardio performance is good.

Now for the point - I abosolutely do not think that this is related to acid. Now, I am not denying that acid is making its way past the LES and UES - but the sudden onset of all of these symptoms immediately followed one night of hard drinking in December. The PPIs give some relief by reducing acid, but I feel like it is masking a greater issue and only doing a so so job. I am convinced that I damaged something - a nerve, permanent muscle damage, etc. Further, more and more I am wondering about the impact of posture and the link between LPR and TMJ. Somewhere along the line the protocol was developed for 6 months of treatment - get a bit better - but expect for it to retun? Huh? Of course we will feel a bit better with perfect diets, exercise and no stomach acid.... at least for some time....

Anyone out there have any thoughts in this regard? New to the LPR board, but really want to dig in and solve these problems. My research over recent days is intensifying. I get the sense that very few docs have a good handle on this thing and are willing to look outside the box. If we can do anything, I guess it's help ourselves. Thanks all - look forward to your thoughts.

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Old 04-11-2011, 01:33 AM   #2
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Re: Sudden onset LPR - could this be neuro?

Hi there ! It's pretty late here, so I will leave youa short msg but I will write you again tomorrow. I also have LPR and jaw pain (once in awhile). There should be a link between those two because I saw a lot of ppl complaining of 2 issues, in various forums. I also read somewhere that TMJ causes the stress from the jaw to transfer to stomach and can cause hernia and lpr. The reason is that jaw is very important to chew food and survive, so somehow it is compromised by other things. My ENT was telling me I have tonsil problems, after a long time of recurrent sore throat, I requested a scope and he said I have LPR which also causes lump in the back of my throat. He wants me to drink PPIs but I don't want to have less acid and potentially cause another problem. Less acid causes allergies, weaking immunity and lots of other nasty things. I am trying DGL, digestive enzymes and trying not to eat much especially 3 h b4 sleep. I don't know either if this is mainly acid causing problems because I stopped having sour taste in my mouth and in general my symtoms get worse after bad flue and exposure to wind. For the last month however, I experience first time digestion issues and was bloated for about 1 month. I also started to have mucus feeing in throat which I never had b4. I am kind of controlling it with DGL now. I also drink chamomile tea, no coffee. I try ginger toowith my tea. Yoga, dancing is what makes me feel good and lots of walking. I moved to US recently and stopped walking much maybe that's why my symtoms got worse. One thing for sure this stupid LPR causes me to be very depressed sometimes an dvery moody. If you find any remedies, pls share ! wishing u to get better

 
Old 04-11-2011, 03:09 AM   #3
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Re: Sudden onset LPR - could this be neuro?

Thanks bimik - while my primary issues (white tongue, shortness of breath, fatigue, facial pain (right ear), funny feeling right in middle of throat above the chest cavity) persist - I do find relief exercising - sometimes twice per day. Also, I do the sauna at crazy heat levels once per day and find it suprisingly very relaxing. My excessuve burping stopped after starting PPI treatment (about a week after) but I do burp almost immediately after a few bits of food. I also dont eat at night. I started PT just this Friday - will be interesting to see the impact on jaw and facial pain, general stiffness. I have been doing the initial exercises. Pain now in neck, but prob expected given treatment. So I will keep at it. Natual remedies are an interesting course, but I find that if I mix to many treatments at once the ENT will give me the old - "I told you to do...." So, I see him in a month and I want to say doc I am doing EVERYTHING exactly like you said for two months... so now, lets figure out a solution. Again though, given that all of this popped up suddenly after one night of drinking I remain convinced that I am only covering up the problem with PPI, PT, etc. Something is damaged. For instance, recently I have developed twitching in the stomach and right eye. The right eye stopped, but stomach continues on and off. I have had episodes of limited oxygen intake - less so lately, but still, just strange. Adding all of this up just seems to be something more than acid.

 
Old 04-14-2011, 12:37 PM   #4
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Re: Sudden onset LPR - could this be neuro?

You wonder if posture is related? Do you have bad posture? I have bad posture and my spine below my neck seems like it curves pushing my head forward. I have a big lump in my throat, that sometimes doesn't feel like a lump as much as food pushing up. It all started when I got sick, aches and pains followed by pressure and pain in my ear. The next night I got a big lump after eating steak near bedtime. My GI does not think the ear pressure is related, and I am taking PPIs, carafate, and antibiotics (for the ear pressure "infection"). I don't like taking this stuff at all and it isn't helping. The lump and ear pressure is really annoying.

 
Old 04-14-2011, 01:00 PM   #5
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Re: Sudden onset LPR - could this be neuro?

My story is pretty similar to yours. Started having problems out of nowhere in December, put on Dexilant, etc. Male, 30s, otherwise healthy, stressful job. Except my symptoms aren't bad: occasional bumps on my tongue and awkward discomfort in my upper chest. No heartburn. I'm also concerned about permanent nerve or muscle damage and don't like masking symptoms with acid reducing drugs.

How did you end up at an ENT? I saw my primary care doctor, who diagnosed me with GERD and referred me to a gastroenterologist. I've seen the gastro twice, and both times he's continued to treat me as he would a GERD patient, all the while saying very bluntly that he can't say for sure whether my symptoms are due to GERD. Neither doctor has suggested that I see an ENT. Should I just schedule my own appointment?

 
Old 04-14-2011, 01:19 PM   #6
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Re: Sudden onset LPR - could this be neuro?

I made the ENT appointment after my ear pressure. I have no primary doctor. But before my ENT appointment this lump in my throat/or sensation of food coming up bothered me so I was able to see a GI that day. The GI gave me the drugs. Then my ENT appointment came and The ENT looked in my ear and my throat and said I was fine. But it really feels like food pushing up or a lump in my throat. I thought it maybe from anxiety but I think then I would have shortness of breath or something. I have no other symptoms then my ear ringing and this lump. Getting upper GI Barium test tomorrow.

 
Old 04-14-2011, 06:22 PM   #7
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Re: Sudden onset LPR - could this be neuro?

Funny you say posture - my primary care doc, ENT (who did his fellowship in LPR reflux) and dentist (who specializes in TMJ) pointed my in the direction of physical therapy - must be a specialist who knows TMJ, and there are only a few around. My ear condition has subsided for the most part after over one week of hard core painful PT....even the stuffiness cleared up. Amazing the connection between these things. I am told I need to continue 4 weeks (home and PT office treatment). While at the PT, I was told that I have bad posture and general tension - forward head, bad positioning. The PT said she sees a lot of people with LPR or GERD with TMJ - supporting the notion there could be some connection. I am doing exercises to work on these things (want to avoid Chiro for now). While I dont think this is the ultimate cause of my main LPR problems (shortness of breath, lump in throat above chest cavity, burping) no harm in trying PT as one of many ways to mitigate some of our conditions. At least the ear feels good now! Jaw tension of TMJ improving. Other LPR issues continues for now.

 
Old 04-14-2011, 06:39 PM   #8
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Re: Sudden onset LPR - could this be neuro?

Quote:
Originally Posted by miketx View Post
My story is pretty similar to yours. Started having problems out of nowhere in December, put on Dexilant, etc. Male, 30s, otherwise healthy, stressful job. Except my symptoms aren't bad: occasional bumps on my tongue and awkward discomfort in my upper chest. No heartburn. I'm also concerned about permanent nerve or muscle damage and don't like masking symptoms with acid reducing drugs.

How did you end up at an ENT? I saw my primary care doctor, who diagnosed me with GERD and referred me to a gastroenterologist. I've seen the gastro twice, and both times he's continued to treat me as he would a GERD patient, all the while saying very bluntly that he can't say for sure whether my symptoms are due to GERD. Neither doctor has suggested that I see an ENT. Should I just schedule my own appointment?
My order was Primay to GI the back to Primary who sent me on tour (at the same time I saw and allergist, pulminologist, cardiologist, ENT) b/c of funky EKG coupled with breathing issues. I had no heartburn symptoms - shortness of breath, bubble feeling in throat of a "lump". If I were you I might take the following course of action: 1) get endoscopy through GI to rule out anything major (non GERD major like hernia, barretts, cancer); 2) Visit ENT b/c he can check the larynx/base of tongue and confirm that acid is moving past the UES into your vocal area - - the GI doesn't do this. While I have not done PH testing YET - the ENT can also do PH testing to track and "confirm" if acid is travelling into your vocal area. Make sure your ENT has good background in LPR Reflux so you dont waste time. Your insurance may or may not require a referral? Also- get full blown physical through Primary with extensive round of blood work - my did not show anything, but I found it comforting. Include an EKG in the physical.

My situation currently is - GI said minor GERD after endo. in December, ENT said tongue is swollen after taking film of vocal area plus diagnosed the TMJ a month ago. Currently seeing a PT who has really helped with the TMJ thusfar. Taking Dexilant and Zantac for LPR (as well as Nasonex for post nasal drip) and cleaned out diet and exercise. Still though, shortness of breath continues..as does lump in throat... some days are better than others.. today, not so good. I also get the red and white bumps on tongue. Let me know how your story progresses.

 
Old 04-14-2011, 07:06 PM   #9
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Re: Sudden onset LPR - could this be neuro?

Can you tell me some of the PT exercises for the forward head and posture? Also I really think I have TMJ. After I had my wisdom teeth out 10 years ago my jaw would lock, especially in the morning. Now it's fine, but I always open my mouth carefully so it doesn't open wrong, if that makes sense.

 
Old 04-14-2011, 07:35 PM   #10
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Re: Sudden onset LPR - could this be neuro?

Quote:
Originally Posted by tallguy View Post
Can you tell me some of the PT exercises for the forward head and posture? Also I really think I have TMJ. After I had my wisdom teeth out 10 years ago my jaw would lock, especially in the morning. Now it's fine, but I always open my mouth carefully so it doesn't open wrong, if that makes sense.
No prob - do these stretches ever 2 or 3 hours (dont miss - even at work) - she also does a bunch of stuff to me that we could never do on our own

1) stand on wall with butt and shoulders on wall feet forward head leaning back against wall. Slowly lower chin towards chest keeping head back on wall... slowly... hold stretch for 5 seconds and do this 10 times (you will know this is working b/c you will feel the tension on your back and lower back)... dont cheat and move your shoulder or butt off of the wall
2) Relax head, use right hand to gradually pull head to right shoulder (be easy) hold for 5 secs, do the same the other way... 10 times 5 sec holds
3) put fingers below ears on side of head and push very hard and pull down - deep massage on main joint muscke in jaw... do 10 times... push hard
4) put index and thumb fingers in mounth between front two teeth, bottom and top... and the open fingers to force jaw open... do this slowly and gradually work up to more and more open. Hold the open position for 5 second 10 times
5) Put right and left index finger on back bottom teeth and push down and hold/// relax jaw when doing this so your fingers do all the work. Hold position for 5 second for 10 times
6) every night and any other time you can do it.. put heat pack on jaw and muscle around your temple.. you can buy these microwave packs at pharmacy

Next week she is then starting me on strenthening exercises to add to this stretch regimen - - also, while expensive, for some people I am told that a bite appliance can be worn at night to relieve pressure on jaw - I bought one, but frankly its the PT that is making the diff. for me.

 
Old 04-15-2011, 05:32 AM   #11
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Re: Sudden onset LPR - could this be neuro?

I have had LPR reflux now for over two years and have been on Protonix and now also Zantac to see if it will clear up. I also take the nasonex. I also have ringing in the ears and nerve damage on the left side of my face. I too am thinking something else is causing the LPR along with the other conditions. I think you might be on to something. I did have something else happen and would like to know if anyone else had it.
I was having problems with my nose and breathing. I felt like I had a sinus infection. I went to see an ENT and it turned out I had a severe crustation at the end of the sinusus. He had no idea what caused this. I am thinking maybe this is also connected to my LPR problems and other issues.

 
Old 04-15-2011, 06:46 AM   #12
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Re: Sudden onset LPR - could this be neuro?

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Originally Posted by dac1234 View Post
I have had LPR reflux now for over two years and have been on Protonix and now also Zantac to see if it will clear up. I also take the nasonex. I also have ringing in the ears and nerve damage on the left side of my face. I too am thinking something else is causing the LPR along with the other conditions. I think you might be on to something. I did have something else happen and would like to know if anyone else had it.
I was having problems with my nose and breathing. I felt like I had a sinus infection. I went to see an ENT and it turned out I had a severe crustation at the end of the sinusus. He had no idea what caused this. I am thinking maybe this is also connected to my LPR problems and other issues.
I wonder if there is any connection between nasonex usage and ear rining...

 
Old 04-15-2011, 08:26 AM   #13
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Re: Sudden onset LPR - could this be neuro?

Hi guys ! I see we do share a lot of common symtoms and now I am more than sure that tmj and lpr are interrelated. There is no accepted medical evidence but I have seen in various forums (in different languages) where ppl complain of all the mentioned symtoms. Btw go to youtube, write down tmj jaw exercises and you will see many. When I have jaw issues, I try not to chew hard food and do those exercises. But when I am feeling better I don't do them, I guess we need consistency. And those exercises do improve the stretch, once you are done you can see that you open your mouth much better. I believe poor posture could be one of the main causes. I was working for a few year like crazy, often 11-12 h daily including weekends and didn't exercise much. Plus my jaw is pretty small and prone to tmj. I had to remove my lower wisdom teeth as well. Stress is the other trigger I believe, the last year I have been emotional and my symptoms got worse. Once I catch cold or flue my throat just doesn't heal for weeks. I never had any digetsion issues before, but since my LPR thing started I had twice very long indigestion issue. So now I am just trying to keep my diet ( no coffee, chocolate, citrus fruits, cooked tomatoes), no eating in the evening b4 sleep, gargling my throat with water once in awhile, sleeping on two pillows which is very hard for me, exercising when I have a chance, watching out for stress although it is hard. My grandpa just pased away and I am kinda not in the mood of delving deeper on my LPR control for now. But try DGL capsules for throat if you have LPR, they do help to limit throat mucus. I take enzymes too. Chewing gum helps me with LPR but it is bad for tmj. Sauna is the best relieve. I had a throat scope by my ENT because before all the ents were syaing I have tonsillitis although my tonsils are not swollen and are small. Wih the scope he saw that my lungs are a bit inflamed and told me to drink PPI for 3 months. But I hate drinking medicine for so long. And I dont want to reduce my acid in stomach so much. So I am going to ask for 24 h ph tudy and manometry as advised by forum members here, mainly Mountainview who has been suffering with LPR and tmj. I dont wanna go through the endoscopy or barium right now. They are not too safe and with the heavy sedation. At one point I might have to, but not right now. Thnx for sharing about the jaw exercises. Stay well ! and pls update if you find a cure

 
Old 04-15-2011, 01:07 PM   #14
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Re: Sudden onset LPR - could this be neuro?

I've had LPR for 3 years. I also have shortness of breath, sore throat, ringing in ears, and eye twitches. I also exercise regularly (did a round of P90X and now maintain using Tracy Anderson Method). I was on Aciphex but quit because it did not work for me. I recently have been reading posts by Seeking Sunrise, who believes LPR could be caused by nerve damage, and some people who haven't been helped by PPIs actually have "laryngeal sensory neuropathy." In my case, I started noticing the "lump in throat" feeling after an infection and taking round and rounds of antibioitics. I did a search on "vagus nerve" and found some promising info. Some people are treating it with drugs, but I've been reading about alternative supplements that help heal nerve damage, such as Benfotiamine and Methylcobalamine, which are an absorbable form of B vitamins. I ordered the supplements online and will try it for a couple of weeks to see if it makes any difference. I have a very clean diet, so it doesn't make sense for me to eat fruit and get reflux. Have you looked into laryngeal sensory neuropathy? I'll be happy to post my results after taking the supplements for a couple of weeks.

 
Old 04-15-2011, 01:53 PM   #15
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Re: Sudden onset LPR - could this be neuro?

Quote:
Originally Posted by TexanPancit View Post
I've had LPR for 3 years. I also have shortness of breath, sore throat, ringing in ears, and eye twitches. I also exercise regularly (did a round of P90X and now maintain using Tracy Anderson Method). I was on Aciphex but quit because it did not work for me. I recently have been reading posts by Seeking Sunrise, who believes LPR could be caused by nerve damage, and some people who haven't been helped by PPIs actually have "laryngeal sensory neuropathy." In my case, I started noticing the "lump in throat" feeling after an infection and taking round and rounds of antibioitics. I did a search on "vagus nerve" and found some promising info. Some people are treating it with drugs, but I've been reading about alternative supplements that help heal nerve damage, such as Benfotiamine and Methylcobalamine, which are an absorbable form of B vitamins. I ordered the supplements online and will try it for a couple of weeks to see if it makes any difference. I have a very clean diet, so it doesn't make sense for me to eat fruit and get reflux. Have you looked into laryngeal sensory neuropathy? I'll be happy to post my results after taking the supplements for a couple of weeks.
Thank you - since my original post, I too have been reading Seeking Sunrise posts... I am now a follower. He should start a cult. Ha. Anyway, any feedback after your supplementation would be very interesting to me. I too have a very clean diet, so easy to evaluate whether something works or not. Intersting you talk about the antibiotics. After my intial onset on this stuff in December I was in the emergency room twice with drug reactions - one being antibiotics. Is there any way to difinitively test for specific nerve damanage.., can a neurologist reach a conclusion with testing, or is it trial and error? Please let me know how your supplments work - very interested.

Thank you

 
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