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Old 05-21-2012, 04:37 AM   #16
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Re: LPR Treatment with GABA

Hi Curb,
How is a motility issue determined? I'm not sure what it even is! When you describe refluxing even water, I just know that's what's happening with me. I also have this terrible strange taste in mouth, which is there no matter what I eat or drink, even if it's nothing at all and just saliva. When I wake up in the morning, I have a few minutes before the mucus collects in my throat, and then it all begins again.

 
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Old 05-21-2012, 09:27 AM   #17
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Re: LPR Treatment with GABA

Let me try to explain motility issues:

Your entire digestive tract, from your mouth to your esophagus down through your intestines, is lined with smooth muscle. The muscle keeps the food moving. When you swallow, muscles in your throat contract. But muscles in your esophagus also contract, pushing the food down into your stomach.

This contraction should happen as one neat wave. But sometimes the muscles contract at the wrong time, or don't contract strongly enough, and then food gets stuck in your chest.

The stomach walls are made of STRONG muscles. About 6 times a minute, the stomach squeezes the food inside it, helping to soften and digest it, and eventually pushing it into the intestines. In some people, the stomach doesn't squeeze often enough, and the food lingers there too long. This is called gastroparesis. Some people with GP suffer extreme symptoms like frequent vomiting. Some people (like me) just have a small appetite and a lot of reflux.

Then the intestines can also have motility disorders, such as IBS. A person can have many motility problems or just one.

Does that help any?

 
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Old 05-21-2012, 11:06 AM   #18
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Re: LPR Treatment with GABA

Your knowledge on this subject is astounding. Thank you for all your information. How do they test for motility issues?

 
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Old 05-21-2012, 01:16 PM   #19
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Re: LPR Treatment with GABA

Esophagus: manometry
Stomach: something called a gastric emptying study, where you eat special radio-tagged eggs and then stand in front of a scanner.

 
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Old 06-05-2012, 05:23 PM   #20
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Re: LPR Treatment with GABA

Janewhite. Did you take neurontin/gabapentin? Did you have a feeling of something in your throat? Did it heal your throat? If so how long did it take for neurontin to work? How long did you stay on neurontin ? Are you pain free? Sorry for all the questions. I have the throat issue for 8 weeks now and just started Neurontin yesterday300mg 2x/day. How many mgs did you take? Thanks

 
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Old 06-06-2012, 05:44 PM   #21
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Re: LPR Treatment with GABA

I never took neurontin myself, and my throat symptoms probably really were reflux related.

300 mg twice a day is a reasonable starting dose. You can go down if it makes you too drowsy, and if it's not enough, your doctor might raise it.

 
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Old 06-07-2012, 08:45 AM   #22
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Re: LPR Treatment with GABA

Quote:
Originally Posted by Lisasc View Post
Been battling this so called diagnosis of LPR ("silent reflux") for several months, since Thanksgiving really. So I guess that's around 6 months. At first it was diagnosed as a sinus infection, but it quickly became clear that it wasn't. I have never had stomach issues or heartburn. What I do have is a constant terrible taste in my mouth, blobs of mucus in my throat that I can neither spit out or swallow (it's just always there), and highly diminished senses of taste and smell. I have given up caffeine, alcohol, fats, and just about everything else that makes life fun. I have also been on PPI's (Dexilant) and Zantac (300mg) for months...with little to no resolution. This was all prescribed by the ENT. Went to GI and had endoscopy with biopsy. He reported NO EVIDENCE of reflux, even at the microscopic level and says its an ENT issue. Well, now I don't know who to listen to since each one sends me back to the other. I have decided to ween myself off the PPI but continue the Zantac (why I don't know since it doesn't do anything for me). Last night I took a GABA for another reason, and think it may be a little better this morning. I only take GABA as needed for a neck problem but now and wondering if it would be useful for my problem. What I don't like about the idea is that it probably treats the symptom, not the cause. But, if it can relax things long enough to heal the supposed swelling in my larynx which causes the unbelievable build-up of mucus (puddling) in my throat, wouldn't that be enough reason right there to give it a go? Anyone out there try this for an extended period of time? Anxious to hear if anyone has had success treating this problem in any other way as well!! Thanks All.
I'm not sure about the GABA, but you asked if anyone had any success with any other methods, and your symptoms sound eerily similar to mine--blobs of mucus, diminished sense of taste and smell, suspected sinus infection, and not having any heartburn, only I had some asthma thrown into the mix as well. In fact, I spent this past Thanksgiving in the hospital. What fun (not)--the mucus and congestion had gotten so bad that my coughing, or my trying to cough it up, caused a bronchial spasm so bad that I could barely breathe. After ten days of steroids, IV magnesium, and umpteen million breathing treatments, I was released and sent home with stronger inhalers, some prednisolone tablets, a couple more antihistamines, and omeprazole--because I had complained that the prednisolone seemed to be causing me a bit of heartburn. The first two days, the nurses had given me Gaviscon in a little cup, but then this pill appeared instead and I was told it was for the heartburn so I took it. When my steroids were finished, I discontinued the omeprazole on my own accord.

My breathing was better, but the mucus in my throat, hoarse voice, and my runny nose continued on. Some days were a bit better than others, but most times my nose was so blocked up I was convinced that I had some sort of sinus infection or worse. I felt absolutely miserable. It was like every single day I had a full-blown cold. Finally, in March, I had a joint appointment with the Respiratory doctor and an ENT surgeon.

They gave me a questionairre, did a quick exam, and then diagnosed me with reflux. Reflux? Truth be told, I didn't believe them, but I dutifully took the new prescriptions (which included an antacid), promised I would elevate my bed and try to lose a few pounds (I have gained like 10kgs since all this stuff started,) and made a follow-up appointment to see them again in two months.

Then I did some research online. I found that the condition that most closely matched all my symptoms--remarkably similar to those of GERD and LPR--was hypochlorhydria (low stomach acid). Still, it sounded crazy to treat reflux with extra acid, but I still felt so miserable (even with the 'new' medications) that I was willing to try anything.

I ended up ordering some Betaine HCl + pepsin tablets online along with some digestive enzymes to try. Worse came to worse, I'd take them and just get heartburn, be out ten bucks, and throw the tablets in the bin, right?

They arrived on a Friday afternoon. I took my first dose of a 625mg tablet of Betaine HCL and the enzymes on Saturday morning with breakfast. Nothing happened, so at lunchtime, I took two tablets. No ill effects, so at dinnertime I took three tablets. Felt a slightly warm feeling in my stomach, so figured that a dose of two tablets was what I could handle.

Sunday morning, I woke up and--

I could breathe! The effects were that fast and that amazingly dramatic, I could scarcely believe it. All this time I'd been taking antihistamines, decongestants, nasal sprays, steroids, inhalers, blowing my nose until it was red raw inside, coughing up nasty phlegm, feeling miserable every single day for months and months--and it all had to do with low stomach acid and the mechanics of digestion? Incredible!

I now take two 625mg Betaine HCl + pepsin tablets along with two capsules of digestive enzymes before every meal. If there is a lot of protein or fat in the meal, I take three Betaine tablets. The only medication I am using now is my maintenance inhaler, since it's a steroid and I don't want to stop abruptly without my doctor's ok. I see him next week and I'm wondering if he's going to think I'm crazy when I tell him his diagnosis was spot on, but I did exactly the opposite of what he told me to do.

But the Betaine is working for me. I still have an occassional 'tickle' in my throat, and on those days I take a tablespoon of Gaviscon before bed and that seems to solve the problem. I'm also using a Neti Pot twice daily, as recommended by the ENT doctor, to keep my nasal passages moist and to clear out any debris. Took me a while to get the hang of it, but my nose seems to be healing up now.

Most importantly, it doesn't run constantly and I can breathe easy.

 
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Old 06-08-2012, 06:39 AM   #23
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Re: LPR Treatment with GABA

I started taking gabapentin Monday afternoon (today is friday). The feeling of popcorn or hair stuck in my throat has almost gone away.... it is extremly better and now just dealing with the burnt feeling in my mouth, roof of mouth, tongue and gums...anyone taking anything to relieve those symtoms?

 
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Old 06-08-2012, 07:00 AM   #24
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Re: LPR Treatment with GABA

I have done so much research but have never come upon Betaine HCL (does it come with pepsin in it or is that a separate pill?). Is that a pharmacy or health food store type of purchase? I haven't heard of any sort of test for "low stomach acid," only quite the opposite. They want to do another endoscopy on me, only this time with a 24-hr. ph study , called a Bravo study. Perhaps they are barking up the wrong tree. Right now, I am on Carafate, Dexilant, and Zantac. Why? I really don't know.

 
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Old 06-08-2012, 07:01 AM   #25
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Re: LPR Treatment with GABA

What is your dosage, and how many times a day are you taking it? As your "popcorn throat" improves, hopefully the same will happen with that burnt sensation in your mouth.

 
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Old 06-08-2012, 07:09 AM   #26
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Re: LPR Treatment with GABA

Hello JasraL,

Please report back how it goes your experience with the drugs you use. Also please tell what your doctor thinks about it.

Thanks

 
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Old 06-12-2012, 03:59 AM   #27
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Re: LPR Treatment with GABA

If your doctors are going to do a pH study on you, maybe they are looking to see if you are producing either too much acid or too little acid. (?) I've not heard of a Bravo study, but there is a test I came across called a Heidelberg test, which involves swallowing a little capsule that measures the change in pH levels after being given alkaline (antacid) solutions and how long it takes for the stomach to recover. The longer it takes to recover, the less HCl your stomach is producing. I'm not sure if mainstream doctors do this test or not as it's nothing I had ever heard about before I started searching for info.

Betaine HCl is derived from natural sources (grains, sugar beet greens, and spinach) and it's primary sold now in health food stores. it seems most brands have pepsin included in with it. Personally, I take two 625mg tablets of Betaine HCl + pepsin and then take two separate capsules of just digestive enzymes before every meal, but I have also seen the digestive enzymes sold in the health food stores with 100mg of Betaine HCl in them as well. I wasn't totally convinced that the enzymes were doing much for me, but when I ran out for a couple of days I noticed my nose started to get just a little wet. When I started them back up again, things were fine again.

To find out what dose to take, it was just a bit of trial and error. I took one Betaine HCl tablet just before eating. If I had had high stomach acid, taking in more acid would have indeed caused me heartburn. But I didn't have any heartburn, I took one more at the next meal. Still nothing happened, so I took three. That time, my stomach felt a bit 'warm'. Not heartburn, just a bit uncomfortable for about an hour or two. So, that's how I found out what dose to take. If, however, I eat a meal that has a lot of protein and fat in it (for example, KFC chicken) then I can (and do) take three Betaine HCl tablets without getting any 'warm' stomach feeling or any heartburn. I suppose the dose could be different for everyone depending on what their stomach pH was to start with, which is probably why it says on my bottle just to take one to two tablets with meals.

All I can say is that taking the Betaine HCl seems to work for me and it worked fast. (Still can't believe how amazingly quick things changed for me!) I can breathe and my nose isn't constantly running. I don't have 'sinus' headaches any more. I snore less at night (according to my husband). Oddly enough, when I was doing my research, I found several medical studies on hypochlorhydria prior to the mid-1970s and then they all seemed to disappear. Coincidentally (or not) PPIs started to be used at about that same time. Now, I'm not opposed to taking antacids, but it seems that the established medical community treats high and low stomach acid in exactly the same way as the symptoms are similar and I have to wonder if the pharmaceutical industry isn't partially to blame for that. Problem is that people like me suffer for it.

Sorry for such a long response, but I wish someone had told me about low-acid and Betaine HCl supplements a long time ago. All that wasted time I spent feeling miserable could have been avoided entirely. If my experience can help just one other person, at least I feel I haven't suffered in vain. I still have the occassional tickle in my throat, so I might give GABA a try and see if that helps get rid of it entirely. I'll keep you posted.

@ ksr -- I visit my Respiratory doctor and the ENT specialist tomorrow afternoon. I'm bringing my research with me, and my bottles of Betaine HCl and Enzymes. I'll let you know how I get on and what they say (or if they'll be wanting to refer me to a psychiatrist for being such a nut in doing the exact opposite of the treatment plan they gave me. If that's the case, at least I'll be a nut that can breathe.)

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Old 06-20-2012, 08:37 AM   #28
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Re: LPR Treatment with GABA

Quote:
Originally Posted by ksr View Post
Hello JasraL,

Please report back how it goes your experience with the drugs you use. Also please tell what your doctor thinks about it.

Thanks
I had a combined appointment last week with both the ENT doctor and the respiratory doctor. I didn't want to come into the room and shove my supplements and my web research in their face, so I just sat back and let them do the talking for a bit.

They asked me how I was feeling. I said I felt 100% better and that I was breathing easier, the runny nose had gone, and I wasn't coughing up any more mucus. The ENT doctor remarked that I looked happier and 'smiley-er' than I had 6 weeks earlier.

Then they reviewed the list of medications they had given me at the last appointment--antihistamines, steroid nasal drops, Gaviscon; and the medications I had been using before I saw them--mainly my Seretide and Salbutamol inhalers; and the other treatments they had recommended--raising the bed, saline nasal irrigation, try to lose weight.

I told them I had raised the head of the bed, was still using the Neti pot twice a day, and had lost 2.5 pounds. I told them I was still using the Seretide morning and night, but hadn't had a need to use any Salbutamol, even before exercise. I hadn't been able to get the steroid drops (as the pharmacy had told me there was a manufacturing shortage and they weren't available until September) but had tried the Gaviscon and the antihistamines--but only for a few days as I had found something else that worked better.

When I told them what I was using--Betaine HCl and digestive enzymes before every meal--they were both pretty surprised. I don't think either one of them had ever heard of Betaine HCl before, but I had brought the empty bottles with me to let them see, and they copied the info into my record. They asked me how much of the Betaine HCL I had been taking, and I told them how I had to do a bit of trial and error to find the right dose for myself. I suppose they will have to do a bit of investigation themselves as to why the Betaine HCL is working for me.

They listened to my lungs, and peered up my nose and said everything sounded and looked fine. If I felt just as good in another six weeks, the Respiratory doctor said for me to ask my GP to reduce the dosage of the Seretide. They told me that as Betaine HCL is categorized as a 'food supplement' that they couldn't write me a prescription for it, but if it was working for me then that's all that mattered and that they would recommend the supplement to other patients to try if they thought it might benefit them.

Suppose that's the best outcome I could hope for. The Betaine HCL is working for me. My symptoms haven't come back. If in another month I still feel ok, which I can't imagine why I wouldn't, I'm going to ask my GP to reduce my Seretide dose.

At least my doctors appreciated me telling me about the supplement, and as they could see for themselves that it was working, hopefully there might be another patient that will benefit from my experience.

@ Lisasc -- How did your pH study go? And are you still using the GABA? Have you noticed any more improvement?

 
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Old 06-20-2012, 08:45 AM   #29
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Re: LPR Treatment with GABA

Hi JasraL. I have been taking the GABA at night only. I am symptom-free for about 5 minutes in the morning, and then when I sip some water it all comes back, sadly. I am disappointed in the results. I haven't yet scheduled the Ph study; I wanted to try a few other things first, and it has to be performed at the hospital, not an outside facility. Where would I find this Betaine L? And, tell me again what dose you take, and how many times a day. I am certainly willing to try it. Also, which digestive enzymes are you on?

 
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Old 06-20-2012, 08:47 AM   #30
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Re: LPR Treatment with GABA

What kind of ppl can't take HCI betaine?

 
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