Hi All

This is the first time posting on this fourm. However, I have been suffering from acid reflex for a long time. currently I have been suffering for 4 months with no end in sight. I have also have a lump feeling in my throat. I sometimes have hot flashes and dizziness. The feeling of acid is just horrible and I cn not take this much longer. I also suffer from IBS so yep I am a walking ball of stress. :o

I have been taking protonix for about 3 months every day. Dr. just added 300mg of zantic to. I have had stomach and pelvic cat scans, upper GI series, stool and blood test. Two years ago I had a colon scope. Noting was found. Dr. says stress.

He said that if the zantac does not help then it is the Endo...scope. I have been trying to advoid this as I am a real baby when it comes to this test. The meds for the twight light sleep soes not do much for me and I seem to be up through all the colon precedure taling and watching what was going on. I think I am going to have to have the Endo but i am very afraid to the point that I shake and can not stop. I have read that it is not as bad as everyone thinks, but having a difficult time believing this.

I am so tierd of feeling like this as like many of you, I can not take this any more. Just looking at all your experiences and trying to convinvce myself while trying to get strong. I am shaking just talking about it.

thank you ahead for any info or feed back.

lily

Are you on 1 dose or 2 doses of Protonix each day?

It sounds like you have larygopharyngeal reflux (LPR), and not so much the GERD form. To treat LPR, you need 2 doses of a PPI each day. Sorry to have to tell you this, but I don't know of a single other person with LPR on this board who has been helped by Protonix, including myself. The 3 other prescription PPIs have a better rep for fixing the problem. They are Nexium, Aciphex and Prevacid.

I take 2 doses of Nexium each morning, together. About half the people with LPR on this board take their 2 doses split apart (1 in the morning, 1 at night) and half take them together. You have to find what works for you by experimentation. Also, most people here have found, through experimenation, that 1 drug is particularly useful to them, much more so than the others. You have to experiment with all 3 to find out.

If any other LPR patients are reading this, and have had a postive experience with Protonix, please speak out!

Hi
I have tried aciphex, zegerid, and now prevacid but to no avail. I don't know if I will try nexium or maybe just get off them all together. These drugs, I believe, can make things worse sometimes. I am going to try a homeopathic remedy. I am waiting for it to come in by UPS. I will keep everyone posted. It seems that it really works for 80% of the people who have used it.(who knows if we believe these statistics). well I will give it a try. I am so sick of all the money for the PPI's and for what?

I am so diheartened with this whole situation. I haven't actually heard of one person who is feeling better and can resume a normal life.

There are lots of people on this board with LPR who have been successfully treated!

My LPR was so bad I was losing all hope and began thinking that life wasn't even worth living with the symptoms. But right as I was reaching my breaking point, I was diagnosed and put on 2 doses of Nexium a day, and 95% of my symptoms disappeared. I now have a virtually normal life, and I've gotten teh situation under control so well that I am even looking forward to having children.

You really ought to try Nexium. It has significant structural differences than the other 3 PPIs. It also the most recent one out on the market (2002).

I'd still like to know, gave you been taking 1 pill a day or 2 pills a day of your meds? I know I'm a bit like a sledgehammer, but LPR patients MUST take 2 doses per day of a PPI.

Thank you fro your replies. I have been taking 1 protonix daily. The doctor said that I should take two but my stomach feels weird. I use to take that other purple pill that starts with a P and everything went right through me. that was a cuple of years ago. I also have IBS. So I am afraid of taking nexim because the doc said that it may happen with nexum.

Right now I am shaking and feeling very sick. I have the sweats and am weak. I just don't know what to do. The doc does not seem to help. I never felt this sick.

lily

Your stomach may be feeling weird because of the reflux problem. Though most LPR patients don't get heartburn, many of us have sensitive stomachs, especially around the bottom of the breastbone where the lower esophogeal spinchter is.

I understand that you're feeling hopeless, as many of us have. But the majority of LPR sufferers have found significant relief - mostly through 2x daily dosing of Aciphex or Nexium. Personally, I went from 6 months of utter hell, to total relief in 1 day. I admit I was the exception as most people take between 2-5 weeks for the meds to heel their erosions, but it was incredible.

My doctor told me to take 2 Nexiums at the same tame each morning and she is a big-shot at Yale. She was so confident in her opinion of Nexium and since she'd seen many cases like mine, I had to trust her even though I was initially like "You've got to be kidding me - 2 pills are going to releive this nightmare". Well, I swallowed the 2 pills in her office and 30 minutes later I stopped coughing.

4 years later now, and I still get some breakthrough symptoms, and still have to take the 2 nexiums every morning, but I have a full and wonderful life.

Please note that my situation was truly exceptional. As I said, most people need 2-5 weeks to respond to the meds, because over time, you've developed erosions throughout your throat which need time to heel, just like a cut or sore on your skin. In the first few weeks, the lowered acidity should allow those erosions to heel. And when they heel, you'll feel a lot better.

However, you might be lucky being on 1 pill a day, as it may have helped the erosions somewhat so that when you up to 2 pills a day, you might heel faster. I had been on 1 pill of nexium a day for that 6 months, which did NOTHING to relieve my symptoms, but as soon as I took the double dose, it did the trick..

Please get off the protonix - it doesn't work for LPR. Go get some nexium, or your aciphex, and take 2 doses, right now. Don't wait.

LPR must be treated with 2 doses daily. Most doctorts don't know that - usually only the big time metropolitan University-affiliated ENTs know it. Here are links to some pubmed abstracts which confirm that 2 doses are the way to go:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16728890&query_hl=5&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15995512&query_hl=5&itool=pubmed_docsum (PLEASE NOTE THAT "BID" MEANS "2X DAILY")

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15837899&query_hl=5&itool=pubmed_DocSum (RECOGNIZES THAT QUALITY OF LIFE IS TERRIBLE FOR UNTREATED LPR PATIENTS)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14603049&query_hl=5&itool=pubmed_DocSum (SUGGESTS THAT THE CAUSE OF LPR MIGHT BE THE LARYNX ITSELF MALFUNCTIONING AND PRODUCTING ACID ON ITS OWN)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16728889&query_hl=19&itool=pubmed_docsum (SUPPORTS THE 2X DAILY DOSING PROTOCOL)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16728888&query_hl=19&itool=pubmed_docsum (SUGGESTS THAT LPR DIAGNSOSIS CAN BE INDIRECTLY CONFIRMED SIMPLY BY RESPONSE TO 2x DAILY PPI DOSING)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16598989&query_hl=19&itool=pubmed_docsum (SUPPORTS 2x DAILY DOSING)

All these links are to a government website, so they don't violate Healthboard policy.

Re: 2x/day. Read some of your replies aswander and had to ask.

I suspect I have LPR because my main problems have been with my throat (I also seem to mostly stop "burping" and hiccuping when I lie down, and don't have problems at night - except in the morning my throat usually feels as if bad stuff has been pooling in it).

I had been taking Nexium 1x/day for about 2 mos when I saw the GE again and I pushed the LPR idea, saying many say there should be 2x/day. He said "go ahead try it for up to 10 days" and see if things settle down. Of course, I've also been suffering from gastritis (NOT sternum, lower elevation burning). He also said try it if I have a bad day. Well, I tried for a week the 2x/day, but that didn't change things - it may have made my stomach worse (THAT I can't guarantee - I've just been suffering with that, much, for the last 2 mos as it is). Which usually means more burping and more esoph/throat symptoms.

I know I may just be very different from you, but when you mentioned "having 1 pill for a while may have made a difference", I wondered if I don't have any reflux "disease" at all because medicine doesn't seem to help me much. (Again, I half suspect the gastritis is causing all my problems.)

Thank you so much for your reply. I did call the doctor and he was not there today. I ask to talk to another one. Hope that I will get a call as that office does not have a great rep of calling back. I will call again if I do not hear from anyone.

It really sounds like I have that LPR and I feel you know how much I am suffering. I just want this to go away. I feel dizzy as well. I am gald that yoiu are feeling much better.

I aslo feel very dry all over even thought i drink a lot of water. Is that another system?

Thanks

lily

I started taking Nexium about 5 weeks ago (once a day). The first 2 weeks, I 'd noticed the sore throat went down some, I was feeling easier on the swallowing. Then after that, like as if my body is getting used to the medicine and the med just not working any more. It went back to square one, and in fact , the throat (kind of near the collar bone area) hurts even more. I started to take 2 nexium yesterday all at the same time, I think it helps some. But I am so afraid 2 weeks later, the symptom would turn worst again. Today I am trying to split the medicine day and night and see what will happen. I feel that I am experimenting, which we should not need to do this in a civilized world!!

Hi Tlily, I am relatively new to the board and to reflux in general. I will tell you that I have been taking Aciphex for 2 1/2 weeks and I haven't had the lump in the throat feeling for about a week (knock on wood). I would follow the advice of the other posters and ask for something other than Protonix.

As far as the endoscopy, believe me when I say I am the biggest baby in the world when it comes to my throat. I gag terribly when the doctor tests for strep throat. I am going for an endoscopy on Monday. I will post my experience when I get home. Hopefully, all goes well and I can give you some reassurance. I have never been partially sedated, so I don't know how I will react. I do know that laughing gas does absolutely nothing for me. I had it when I got my wisdom tooth out and it was terrible! So I am hoping I have better luck with this.

Good luck to you. I hope that you were able to get some answers from your doctor's office.

Hi Ol'Line Rebel,

I'm sorry that you're having trouble finding relief. As much as Nexium can be effective for some people, there are also many people who have trouble with it. The most common complaint for all PPIs seems to be naseau and stomach trouble. Sometimes it can be dosage related. Even I am not immune. When I accidentally swallowed 3 Nexiums one morning, I developed a horrible sense of nausea. Apparently my dosage limit is 2 nexium at a time.

Have you tried each of the 4 prescription PPIs at a 2x per day dosage? Do you do any of the following things that can aggravate LPR:

1. Drink alcohol
2. Smoke
3. Pounding exercise and or/stomach crunches
4. Eat fried foods/fatty foods

As part of my recovery, I have to refrain from all of the above. Though I never smoke at all anymore, I'll have the occasional glass of wine and occasionally enjoy some fried dough at a street fair. But I always suffer for it in the end. I exercise a lot, but don't run and have given up the pursuit of a 6-pack because I can't crunch my stomach muscles without regret.

Have you tried each of the 4 prescription PPIs at a 2x per day dosage? Do you do any of the following things that can aggravate LPR:

1. Drink alcohol
2. Smoke
3. Pounding exercise and or/stomach crunches
4. Eat fried foods/fatty foods

As part of my recovery, I have to refrain from all of the above. Though I never smoke at all anymore, I'll have the occasional glass of wine and occasionally enjoy some fried dough at a street fair. But I always suffer for it in the end. I exercise a lot, but don't run and have given up the pursuit of a 6-pack because I can't crunch my stomach muscles without regret.



Hi and thanks!
:)

1. Never (only the generally once/month swig of communion)
2. Never
3. Couch potatoe, but I HAVE had to do physical therapy for my butt (which undoubtedly caused all this) involving inner abdominal muscles - including sucking in WHILE lifting butt upward (lying down). I've been kind of lazy and since I've been released from PT visits the other week, almost none! PT started abuot 2 mos before my "sudden" watershed point with "GER".
4. Love them, but the last 3+ weeks has been highly restricted. I've only had occasional incidental fried or really fatty foods. We've been eating chicken and fish. I'm doing this till the end of 4 weeks, then experimenting with chocolate. Which time I'll also be visiting the GE.

As you can see, it seems the only thing that might really aggravate my gastritis/reflux consistently this last month is the exercise (generally, if I'm "good", I've only done them once a day - should be 3). :(


(Sorry to have hi-jacked the thread!) :eek: :nono:

Hi all

I called the doc to try and get some nexim. My doc was not there and another doc called the surgen and told me that he wants to do a scope. they were trying to get it for tomorrow. they left a message on my voice mail and I did not hear the message until the office was closed. So i will call tomorrow and probaly be scoped next week. One of my clients works at a doctors offfice so she is going to get me sample of nexum for me to take on Sat. then I could ask my pcp on Monday for a script.

Eve 8 I will be waiting to hear about your experience on Monday. Who knows I may be done on Monday to. I really am a baby about these things as I do not sedate very easy and I gag on a pill. So boy am I afraid. :eek: Goodluck to you as well. I will be thinking of you even if I am having the same done.

Aswander thank you for all the info. You really are knowledgeable. Have you been scoped to? How was it? I have been puting this off for so long.

lily

Tlily
These stomach problems are relatively new to me like over the last couple of months. If you can get in to have a scope within a week I'd go, I've been waiting for 2 months and have another week and a half to wait. I hope something works for you.