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  • 24 hour a day heartburn

    I am a new member, and have had severe heartburn for a year...heartburn, however, that occurs 24 hours a day. I am currently seeing doctors, having tests, trying everything I can. I have two questions. 1. Is it possible to have "GERD," where you have heartburn, without relief, no matter what you eat or do, for 24 hours a day? and, 2. I don't seem to respond to PPI's. I am currently on twice-a-day 40mg Nexium, with no relief, and my doctor recommended I increase the dosage to 4 times per day. Are some people unresponsive to PPI's? All tests I've had so far are not showing anything that doctors consider "life threatening." I am continuing to be tested...esophageal motility, ph testing, more biopsies, etc. Is this severity commom? Can a person heal from this type of severity? I would appreciate greatly any responses from people who may have had this kind of difficulty, and have had some relief!!

  • #2

    Could you elaborate on how long you've had your problems, how and when it began, was it severe and 24 hours right from the start, or did it get progressively worse, etc? Are there any triggers - certain foods or beverages? How long after the problem began did you commence taking ppi's? Have you tried any others besides Nexium? Have you ever tried over the counter antacids, such as TUMS/ROLAIDS, or others, and if so, did you get any relief, even if only temporary? What were the results of your diagnostic tests - manamotry, ph, endoscopy etc? Do you have nocturnal heartburn moreso than in the daytime, if at all? Do you have any other symptoms, such as belching or coughing or sore throat for example? Do you consume a lot of acohol, caffeine, are you a smoker, or overweight, or engage in rigorous exercise or professional singing (all risk factors)? Aside from taking ppi's, have you made any lifestyle changes to try to combat the problem? Was there anything you recall as being associated with the onset of this problem - weight gain, change in diet, etc?

    The answers to these questions may help paint a clearer picture for the folks on this board who have experience with matters like this.

    I for one would say based on personal experience that you can have severe symptoms pretty much around the clock without relief from ppi's. There are reports of esophageal hypersensitivity occurring, sometimes as a function of the intercellular spaces within the esophageal tissues getting inflamed and bothered from the stomach acid. I know that when I sought out GI opinions last year, I went and saw 3 separate gi's and 2 ENT's in succession because they were very divided in their opinions (some thought I should do ph testing and likely have surgery, while the others thought I was simply too stressed and focused on symptoms). It took several months before the ppi's even had any affect on my symptoms, though my symptoms were mainly in my upper throat, which takes longer to heal. Perhaps you haven't tried the ppi's long enough though. Sometimes some folks do better on prevacid or aciphex than Nexium for whatever reason - might be worth trying.

    Nexium twice a day is a pretty typical regimen for severe gerd. However, 4 times per day I've never heard of, I would certainly seek a second opinion on that regimen if you haven't already. I've read many studies on ppi dosing, and I don't recall any studies recommending 4 times per day dosing. PPi's typically remain in the bloodstream 10-12 hours. I would invite the other board members to give input on 4x/day, this sounds excessive to me.

    I think you should be very aware though as you deal with this, that at some point you may be faced with the option of surgery. I don't mean to jump the gun, as that day may be very far off, if ever, but my point is that there are very credible studies which indicate that if you get no relief from ppi's, then you are not a good candidate for surgery.

    As far as the question, can you heal. It is my belief that some people can heal if they figure out what their triggers are and remove them. Most doc's I've dealt with tell me to take ppi's for the rest of my life or else have surgery. Some people find that the ppi's eventually start working and they're ok with it, but others find that the ppi's stop working at some point and opt for surgery. The reflux barrier is a complicated part of the body, and can become perturbed for a variety of reasons. Some of the reasons can be mechanical such as hiatal hernia, or other reasons can be more neurological, such as consuming nicotine, alcohol, caffeine, etc.

    Several folks on this board have reported favorable results with low carb diet - like 30 grams or less per day. Personally, alcohol is a no no, as is Starbux caffeine, and most fruits and simple sugars.

    I'm convinced in my case that consuming caffeine daily took it's toll on my reflux barrier, and the damage that was done required stopping caffeine completely for a couple months, and also eating tiny infrequent meals of bland foods, and never within 4 hours of bedtime. Then the healing commenced, but it took a long time and a disciplined approach.

    Another thing you might try is chewing sugar free gum - the saliva you swallow is a natural antacid, might make you feel better.

    Some patients are sometimes prescribed a Malox cocktail, which includes lydocaine and it can be swallowed and it numbs the esophagus and provides some relief. My GI prescribe it for me, and it can be helpful for times when you feel more pain than you can handle.



    • #3
      more of 24 hour heartburn

      Hi Mark in Seattle,

      Thanks for responding. I need the wise advice on this website very much.

      My heartburn started last Feb. 2007. I am 43 years old. I had never had heartburn in my life. I am a "hobby" chef, and my favourite foods are onion, garlic, tomatoes, spicy curries, vinegars, etc. and my favourite activity was cooking. I was in great shape, very consciencious about my weight and exercised moderately.

      My heartburn first started at lunchtime. I was rushing to eat and rushing to work (teaching). Because I really didn't know what it was, I basically ignored it, and tried to slow down a bit. It continued to progress and by May, it was unbearable and all day and night, and my doctor started me on Nexium and suggested all the appropriate lifestyle changes.

      I didn't follow the lifestyle changes at first as I thought how can giving up garlic, onions, and tomatoes be healthy? I did stop all caffeine (I had given up coffee a year ago anyways and only drank small amounts of black and green tea (very healthy), and stopped all alcohol. The single dose Nexium didn't work, and the dose was doubled.

      By June, I was at the hospital emergency (I'm from Ontario, Canada), checking for heart attack problems. I had a barium x-ray, and it showed moderate reflux. I raised the head of my bed with bricks, gave up all trigger foods, drank tons of water, did everything I could to help.

      In August, I saw the specialist who did an endoscope and found evidence of reflux near the LES that he thought I probably had for years. He changed my presciption to Prevacid, added stomach flushers, and I continued on. I find that some antacids give me some relief, not much, and it doesn't last for longer than 30 minutes. I don't sleep at night; I wake up 8 times per night. I continued to see the specialist regularly.

      My one problem or cause of my condition could be the "anxiety" portion of my life. I have a serverely, mentally disabled 12 year old son, who was born with a large brain tumour, and has severe ADHD, he's always trying to "run away," and he has grand mal seizures regularly. As you can see, for 12 years, my life has been very, very difficult. My husband and I fought for help and support for our son his whole life. At the onset of the GERD, we finally were accepted into a permanent group home arrangement where we could share the care of our son between them and us. Life should have become much, much better, and then my GERD hit.

      With life as it is, perhaps I couldn't get sick before as I had too much going on, and now when I have finally some quality time to myself, my body takes on the illness. Anyways, with the information about my life, my gastro specialist, discusses "visceral hypersensitivity," and prescribes me low dose antidepressants (Amytriplylene), which I take for about 4 weeks, but I'm so freaked out about the idea of "antidepressants," I stop taking them.

      I am at this point rethinking taking them, however, next week, I have an esophageal motility test and a Ph test booked and have decided to wait to see what the results show. I am doing the tests while on the double Nexium to check if the Nexium is working. I also had a second endoscope where the doctor did more extensive biopsies for rare esophogitis, but I don't have the results.

      My heartburn pain at one point was 10 out of 10, and now it fluctuates between, at least a 3 out of 10, to as high as a 6 or 7 out of 10. It seems to be the most constant right mid-chest, over my heart, but the pain does travel the length of my esophagus, and I often have a sore throat. I clear my throat a lot, and do have had a slightly hoarse voice for a while, but I though that was just me. I also tend to choke on liquids a lot. I have no regurgitation that I can notice. Liquids of any kind seem to aggravate my heartburn greatly, so all I can drink is water.

      I've dabbled extensively around in the "alternative" health care of ostepathy, hypnosis, severe diet dairy, no wheat, no gluten, no soy, etc., and taken many different supplements and vitamins (spent lots of money), but have really had not too much success. I know the anxiety reduction piece is important so I am actively working on that. The only time I'm free of pain is when I'm actively eating (food is travelling down my pipe), and I wonder if that's a standard symptom as well.

      Whew, very long post, however, I guess that introduces my problems with GERD. I truy appreciate any help, advice, responses, bits of wisdom, etc. I truly hope to get better and get my quality of life back!


      • #4
        sorry to hear about your gerd troubles; but it sounds so familiar; don't despair! it does change and you will feel better; my symptoms were rather sudden, and started during a very stressful stretch; and there was a time that i had 24 hr symptoms; sore throat, laryngeospasms, burning, even burning mouth... i had all the tests, some twice; no signs of gerd though i have a small hiatal hernia which many people over forty have, and are most often asymptomatic; my GI also suggested visceral any case it took almost a year and a half to feel like i was getting relief; i've been on 2 ppis and have been down to one a day; i have no symptoms now, can eat things i love, but i don't drink any coffee which i used to drink lots of and still bothers me when i do; i think the biggest trigger for me is patient; don't despair; bodies change and heal...this is a great board for advice and support...


        • #5

          I thought what I better do is post my perspective on a separate thread, so here it is [url][/url]

          I think your story sounds very familiar - I think it is very similar with many folk's experience. It's unfortunate that it's so tricky to figure out how to get a handle on what to do just to even get some symptom relief when it seems like the ppi's don't work.

          I would just counsel you to be persistent and keep brainstorming and trying whatever approaches you can think of. I have kept a diary of my symptoms and medicine and food intake, etc for the past 6 months, and I've found it very helpful in tracking down what works, what doesn't etc. I kept it all on a spreadsheet. But that's me - I have been quite obsessive about the whole thing.

          Maybe you're right about the timing regarding your son. Maybe it's time for you to have a vacation and someone take care of you for a while. I know caring for my kids who don't have any serious medical problems is difficult enough, I'm sure your job has been way more stressful. Trying to untangle the stress component can be hard.

          I flew down to California recently to consult with a prominent GI, and he actually advised me to prioritize my getting a handle on my panic attacks before attacking the gerd. Hopefully you can find a good doc to help advise you on handling your stress. Maybe things like exercise, sleep well, and possibly relaxation cd's or meditation training, to induce the "relaxation response". I'm certainly no expert - my docs always tell me I'm a tightly wound individual - so who am I to tell you about that stuff? It's just that I can totally imagine that incredible stress can poison a person's body, and so I guess in that respect, since I feel I've been such a stress case over the years, I just wanted to touch on that point because I find it hard to imagine that dealing with your son's medical issues wouldn't call for extra special coping and relaxation practices on your part just to avoid stress induced illness. Not that I know you, but your message sounded like you've been waiting to exhale for 12 years now. And maybe your body just doesn't even know how to exhale just yet, if you know what I mean. Sorry if that's sounding a bit off track. Is the group home turning out to be helpful for your son and also helpful to give you and your husband some time to yourself?

          I tried accupuncture twice. I found a research report stating that a certain accupuncture procedure is supposed to be helpful, and I suppose trying it only twice is not giving it a fair shake, but that's all I did.

          The prominent GI in California suggested I could try Baclofen, which is supposed to stop transient lower esophageal relaxations (TLESR's) from occurring. TLESR's are supposed to account for the majority of gerd symptoms (I think around 65% of gerd is due to tlesr's). I have yet to try it. I seem to have a phobia of medicines nowadays, which causes panic attacks.

          There was also a study I read about by a Brazilian researcher who claims he had success treating 165 patients with a melatonin concoction, now known as Protexid. I ordered it, but due to my phobia, I did not try it. I've been in contact with the researcher by email. He's very receptive to emailing about any questions. Melatonin is a hormone produced in the pineal gland in the brain and also in the gut. It's experimental since there is not a lot known about melatonin as a supplement, so don't think I'm advocating it, but if you ever have an interest, I can point you to the study, and also to the Mayo Clinic web site which summarizes all that is known to date on melatonin supplementation for treating ailments.

          Try to be patient and maintain optimistic thought. Some of the relaxation cd's can be helpful for the mental/anxiety component.



          • #6
            Hi Mark,

            I was wondering if you ever tried the melatonin...I can understand not taking it...I don't take anything I don't have is so scary taking drugs...For some reason and I don't know why yet I have started having my panic attacks again...I go to the tanning bed once a week and when I got in it about 2 mins I felt like I couldn't breathe, heart started racing, mouth dry all the same old symptoms so I almost killed myself getting out of it...and since then I have been having what I call baby ones...I know you have them also so I was just wondering is there one certain thing that triggers yours or do they just happen on their own? I said I have no clue what triggered this...I have been absolutely fine and out of no where this happened...thanks for any wishes...


            • #7

              No I never took the melatonin. I corresponed with the researcher who came up with it, and I ordered it, but I never took it. It's like that with countless medicines I picked up at the pharmacy too.

              For me, what happens is I will pop a pill, and then I believe a little thought occurs in some little corner of my mind, telling me that the medicine is going to cause some side effect. That triggers arousal, and then the attack may come on slowly or quickly, it varies. So it's mainly a phobia of medicine type deal these days, moreso than a generalized thing.

              I've been free of them ever since I quit taking gerd medicine, I was having attacks like daily, but I've been free about a month now I think.

              take care,


              • #8
                Thanks Mark,

                Well thanks for the info. I usually know what triggers them but I was just moving along doing great I thought...that is why it is puzzling me so...I usually have something major going on when they start but I can't think of anything...It was awful though...thank God my daughter was there to help me get back home...because one of my symptoms is the shaking, trembling kind of deal... its like I'm cold but I'm not so there is no way I could have drove home...and of course there was 20 people in there so that was a lovely show I put on...and then all day today I've been having little ones...really weird bc I can't remember the last time I had is so hard to figure this out...I just wish I knew what was causing them now...and I swear they start in my stomache I can feel like a tiny electircal wave and then it runs my whole entire body...and like the one I had last night leaves me totally exhausted...I tremble so bad and my heart races so fast I feel like I have just worked out for like 4 hours...well thanks for your info......if you ever do try the medicine please let me know I would love to know how it glad your getting yours under control once wishes...


                • #9
                  more questions on 24 hour a day heartburn

                  Hello to all, and thanks to the informative, positive comments. I do have a couple more questions upon which I would appreciate any more feedback.

                  I, as well, have problems with medication. I seem to be always sensitive to side effects, and therefore, I always hate taking any kind of medicine. I am trying to overcome my adversion to medicine, especially if it can help my situation. I don't want to automatically assume that the medicine will not work and cause me negative effects. I do believe that due to keeping stress and anxiety in check, it's always best to look at situations/new trials, etc. in a positive light.

                  Because I am getting so worn down from the intense heartburn pain, I am thinking about trying a low dose tricyclic antidepressant. My doctor says that this kind of antidepressant, in low doses, works for nerve pain, and if I do have a hypersensitive esophagus, perhaps they would relieve the pain, especially, as the doctor tells me, since my acid is "all turned off because of the twice a day 40mg of Nexium."

                  My question is...would this type of med therapy work with or without the Nexium? I am definitely finding out, due to this forum, as well as other reading, and discussions with doctors, that GERD is a very complex, complicated disease. Testing, as well, does not seem to even begin to get to the root of "exactly" what's wrong in patients, and surgery is not always the answer.

                  How important is it to get "physical testing" answers before trying various meds in hope that one will help? For example, I don't have my results for manometry and Ph tests, I'm not sure if I have huge amounts of acid causing the pain, or whether I do have hypersentive esophagus, or even something else.

                  Should I wait in pain before trying various meds, or does pain make the disease worse, and the "potential" to heal longer or harder? I know pain can delay healing when the body can't rest and many doctors recognize the immense importance of pain relief. Should pain relief be the number one goal regardless of what else might be going on?

                  Secondly, are there any really safe foods to eat to reduce heartburn? Because I have the 24 hour a day heartburn, I can't seem to figure out which foods trigger me more. I have given up all the formal heartburn triggers, eg. anything acidic, spicy, pungent, etc., and all mint, alcohol, caffeine, etc., and I have experimented with no daiy, no wheat, low carb (I've read a fair bit about low carb on this site), however, to no avail. I'm not sure about fasting because when I do get hungry and my stomach is empty, I get the worst heartburn of all. Is there one specific food, or even a liquid meal plan or something that anyone can recommend that they've had success with?

                  I would once again appreciate any comments. I really appreciated the positive advice/information/comments on healing, or success in getting better, and I think it's wonderful to start a thread for positive success stories, even if it's a small success. During my one year battle so far, I longed to hear something positive to give me hope, and just kept hearing terrible stories. If anyone else can give hope to others about healing, it would be great to hear from them as well, certainly for hope and moral boosting.


                  • #10
                    I have constant heartburn that doesn't respond to diet and meds, but I was found to have delayed gastric emptying.


                    • #11
                      Hi ~K~
                      Do you have a GERD diagnosis? Did you have any other tests for your heartburn? Do you take any stomach "flushers?" How are you treating your heartburn? Sorry for the slew of questions, however, I would like to try to get some advice for my constant heartburn and would be greatful for any suggestions.


                      • #12
                        To identify the problem, you need to have an endoscopy and a pH test arranged through your GI ASAP. Without the results of those two tests, no one can really tell you much.

                        99.9% of all people who get a pH test while on PPI's come up negative. In that sense, PPI's work for everyone. They work to suppress acid production in everyone who takes them.

                        Now, they do not bring relief for everyone because acid reflux per se is not always the cause of hearturn pain. There are other possible causes, and that is why an endoscopy is important.

                        So my advice would be to contact your GI ASAP and arrange these tests. In the meantime, I would recommend that you continue taking PPI's (to minimize any damage that you might be experiencing from acid reflux), and also that you try DGL tablets. Hopefully, they will provide you with some temporary pain reduction (but if they come in a capsule, open up the capsule because you have to mix the DGL with your saliva to get the desired effect).


                        • #13
                          hi ratobranco,
                          i did my first PH test while i was on 40 mg of losec,and my results where positive
                          i was to scared too stop the meds.
                          i also took antacids that day.
                          i geuss i can say that the meds don`t work for me.
                          or did they just stopped working for me??


                          • #14
                            hi ratobranco,
                            what can be other causses of the heartburn pain??
                            cause i am a little confused,last month i did my second ph test,as a check up after my esophyx procedure because i still have symptomps,this time i was a little bit braver,i stopped my zantac two days before the test,it also came back possitive.
                            is it possible that i don`t react on the ppi`s at all ??
                            last monday i did a impedance test,this time i stopped the meds five days before and i was having a very hard time.
                            any suggestion is welcome.


                            • #15
                              Hello all,

                              I have read, and sometimes medical essays are hard to understand, that a small percentage of people do not respond to PPI's. Something about a special metabolism or something, and then there are some studies that show certain ethnicities, eg. Asians, do not respond to PPI's due to this certain metabolism. Very confusing, so I'm not sure I'm reading correctly. However I am going tomorrow for a Ph test and I am on 40mg of Nexium, 2 times a day, and my heartburn is constant. My 2 endoscopes showed everything fine. I am quite interested to see what the ph shows. If the Ph shows "no problems, or that the acid is shut off," should I assume that they are working for me, and that my heartburn pain is coming from a different problem?