Hi. My name is Elyse. I am 30 years old, and I have had GERD since I was about 14. Had my first Endoscopy at 15. Since then I've been on every medication out there. I started with Pepcid, moved to Zantac, then Prevacid, Prilosec, Nexium, etc... You name it, I've taken it over the past 15 years. Looking at the list of PPIs, there is actually not a single one that I haven't been on. Most recently I was on Aciphex and for about 2 or 3 years it was working great. Then all of a sudden it stopped working. This has happened before, so my GI doctor just figured it was time to change to something else. So I was put on Prilosec for a month. No help. Then I was given Protonix. That worked for about a month and then stopped. Now I'm on Dexilant 60mg twice a day, as well as Zantac 150 twice a day. I was also on Carafate for a little while. NOTHING is helping. For years I have been strictly following the GERD diet and I was doing well. For the past 3 or 4 months I have been getting steadily worse. I am living on Alternagel, which is an alternative to Mylanta and it doesn't cause Diarrhea if you take it too much. I'm eating very little because I'm nauseous all the time.
My day starts by waking up in the early morning with pain in my esophagus and stomach. I don't eat for 4 hours before I go to bed. It feels like I swallowed something hard and it's just sitting there. I have been sleeping with my head elevated by a bed wedge for about 5 years. When I wake up with this pain, the only thing that makes it feel better is to eat something. I eat, and it gradually goes away over a few minutes. But I'm left with a dull ache as well as acid reflux for the rest of the day. I had my gallbladder removed about 8 years ago, otherwise I'd swear it was that. Someone suggested that maybe I have a stone in the common bile duct, but I am not jaundiced and all of my liver enzymes are good.
My GI doctor has been taking care of me and is also at his wit's end trying to figure this out. He did an Endoscopy last week and found no ulcers and no hiatal hernia. I was actually HOPING for him to find something!!! That way it could be treated and I could move on with my life! He did find a lot of inflammation in the Antrum as well as the lining of my stomach. He also removed some polyps that were caused by being on the PPIs for so long. He found nothing wrong with my esophagus. He said it could possibly be H-Pylori. I have to wait until Wednesday to go back and find out. I'm praying for it to be positive for H-Pylori!!!!
Has anyone ever experienced anything like this, and if you have what did you do for it? In all of my years with GERD I have never dealt with anything like this. It literally feels like I swallowed a golf ball and it is just sitting there in my stomach. Help!
I am also struggling with symptoms that don't respond well to meds, although not as badly as you most of the time.
People develop tolerance to PPIs after a while, they can stop working. Not much you can do about that.
Lately I'm trying some L-glutamine. It's an amino acid that can strengthen and build up the lining of the stomach. I bought a powder, and I take 5 grams per day, dissolved in water. In a few weeks, I'll see how it goes.
Thanks Jane. I appreciate your advice. I have to go back to the GI doctor on wednesday for the results of the H-Pylori biopsies and if it's not that, then I'll bring up the L-Glutamine like you suggested.
Have you been tested for Celiac disease? My friend had years of similar symptoms and eventually they thought to test it. It's made a world of difference now that she knows what to eat/not eat.
Myself, I had sudden severe stomach pains, one night about two weeks ago and ended up in the ER. Nothing big showed up on the blood tests, or the xrays and cat scan. The pain went away that night, fine for a week, then a week ago I started having the worst acid reflux ever and have had it constantly for a week. Nothing I take (at any strength, even combined - I'm desperate) is helping at all. I'm going crazy!
I actually have a similar problem, only this is the first time that a medication has stopped working. I actually thought I had respiratory issues at first, then my GI thought maybe it was cardiac, but now we're sure it's GI and Prilosec just stopped working. Prevacid, unfortunately, doesn't do anything either, so the next step is Protonix or possibly another UGI.
I'm wondering how your H. Pylori test turned out. Report back and let us know. Hope you find some comfort soon.
You really should get a Manonmetry done to see your swallowing motility and LES pressure. Also some people develop visceral hypersensitvity which means a little acid hits your esphogus cause alot of pain. Are you getting acid coming up to your throat when you burp?
Also look up NERD. Non erosive reflux which means when GI dr does EGD he finds no damage. ITs caused by bile or pepsin.
PPI's dont help with that.
Ofcourse your LES might not be working or your have a hiatal hernia which is causing acid to come up
I have both GERD and IBS and my IBS *reads* as GERD all the time. I've basically determined that if I feel heartburn and yet have no acid coming up my throat and my voice is working fine (I'm a professional singer and genuine GERD makes my cords swell which I can hear when I'm singing), then it's IBS. My main IBS symptom is heartburn without reflux.
So I take Dexilant 60mg 2X a day like you but I also take Align (an over the counter probiotic) each morning which, after a month of making me feel like CRAP (nausea, etc. - really disgusting), actually helped greatly in reducing the heartburn feelings. Not completely but a HUGE difference. Seriously it took a MONTH before I noticed I was feeling better and then each week I've noticed improvements for the most part.
If you are still getting acid up your throat then this obviously is no help but I thought I'd put my experience out there in case you were similarly built. :-) best of luck.
I was diagnosed with GERD and no meds helped. When I got heartburn it was terrible. Only milk helped. I had to carry some with me everywhere. The problem was really "heartburn" caused by food that could not get into the stomach fermenting in the esophagus.
I would ask my doctor to order a manometry to test the muscle activity in the esophagus. A test to measure acid levels in the stomach is usually done at the same appointment.
@teddybearhero: did your 180 wrap did not help with the acid reflux? i read your other post, because im considering to get anterior fundo also for my outraged gerd
I have achalasia so I had a myotomy (which destroys the LES) at the same time as the partial wrap. I no longer have a functioning lower esophageal sphincter and the partial wrap is enough to almost totally control any acid reflux. I don't take any drugs or antacids for the heartburn now.
When I have heart burn it is always a terrible pain. Now I get that whenever I eat too many gum drops or just one ibuprofen or certain other foods. I rarely get the normal kind of heartburn and it leaves as soon as I drink some milk. The really bad heartburn/pain takes a lot of milk and I think they are spasms related to my achalasia and are not real GERD.
I can burp and vomit with the partial wrap and have no bloating or other digestive problems with it at all. Sometimes this is a problem with the full wrap. I do have to be careful not to overeat or I feel sick. I think the volume of my stomach is less because of the wrap. But amazing difference since I've had the surgery. Just a miracle. Scars are barely visible now too. Good luck!
@teddybearhero: did your 180 wrap did not help with the acid reflux? i read your other post, because im considering to get anterior fundo also for my outraged gerd
I have a hard time trying to figure out what is a spasm and what isn't. The most obvious was the "swallowing glass shards" sensation that I could feel working its way down my throat. However, they disappeared after my surgery. But I think some heartburn sensations are spasms too. My heart burn feels like a sharp burning pain that runs up my chest into my ear and jaw and back out into my spine. Feels like I've drunk acid it's so bad. Milk relieves the real heartburn almost immediately and I only have that once a month now.
The spasm pain burns as bad but only in my throat. But the "spasm" pain is only relieved by swallowing so I have to swallow continuously for an hour or so until the pain stops. Dry swallowing (where you don't actually swallow anything) doesn't work at all. I've learned to take tiny sips slowly so my stomach doesn't fill up and I get sick. Milk works well for this but hot tea works too and leaves the stomach faster.
Quote:
Originally Posted by gpinzone
Teddy,
Can you comment on what your spasms feels like? Does the spasm cause chest pain like pressure pain similar to angina or is it a burning pain?
My pain is constand burning in middle of chest and some middleand upper back. Once and while i get burning on my triceps. Ive taken some many tests to rule stuff out. It's not being caused by aci as ph test and dual impedance ph show normal gerd acid exposure. End result is I somehow developed functional heartburn/visceral hypersensitivty in my esophgus. I didnt have this issue until after I took amitriptyline. It made my chest burn. After being on it for 3 months when I got off burning never went away. I just want to understand what a spasm was supposed to feel like to rule out thats not what I am having. Since the pain lasts most of day and swallowing doesnt help it sounds like a nerve thing and not a muscle contraction issue.
Hi. My name is Elyse. I am 30 years old, and I have had GERD since I was about 14. Had my first Endoscopy at 15. Since then I've been on every medication out there. I started with Pepcid, moved to Zantac, then Prevacid, Prilosec, Nexium, etc... You name it, I've taken it over the past 15 years. Looking at the list of PPIs, there is actually not a single one that I haven't been on. Most recently I was on Aciphex and for about 2 or 3 years it was working great. Then all of a sudden it stopped working. This has happened before, so my GI doctor just figured it was time to change to something else. So I was put on Prilosec for a month. No help. Then I was given Protonix. That worked for about a month and then stopped. Now I'm on Dexilant 60mg twice a day, as well as Zantac 150 twice a day. I was also on Carafate for a little while. NOTHING is helping. For years I have been strictly following the GERD diet and I was doing well. For the past 3 or 4 months I have been getting steadily worse. I am living on Alternagel, which is an alternative to Mylanta and it doesn't cause Diarrhea if you take it too much. I'm eating very little because I'm nauseous all the time.
My day starts by waking up in the early morning with pain in my esophagus and stomach. I don't eat for 4 hours before I go to bed. It feels like I swallowed something hard and it's just sitting there. I have been sleeping with my head elevated by a bed wedge for about 5 years. When I wake up with this pain, the only thing that makes it feel better is to eat something. I eat, and it gradually goes away over a few minutes. But I'm left with a dull ache as well as acid reflux for the rest of the day. I had my gallbladder removed about 8 years ago, otherwise I'd swear it was that. Someone suggested that maybe I have a stone in the common bile duct, but I am not jaundiced and all of my liver enzymes are good.
My GI doctor has been taking care of me and is also at his wit's end trying to figure this out. He did an Endoscopy last week and found no ulcers and no hiatal hernia. I was actually HOPING for him to find something!!! That way it could be treated and I could move on with my life! He did find a lot of inflammation in the Antrum as well as the lining of my stomach. He also removed some polyps that were caused by being on the PPIs for so long. He found nothing wrong with my esophagus. He said it could possibly be H-Pylori. I have to wait until Wednesday to go back and find out. I'm praying for it to be positive for H-Pylori!!!!
Has anyone ever experienced anything like this, and if you have what did you do for it? In all of my years with GERD I have never dealt with anything like this. It literally feels like I swallowed a golf ball and it is just sitting there in my stomach. Help!
Sounds so desperate and I feel for you so the best that I can come up with is that you need to change your doctor.
Go alternative.
You need someone who will look at your whole person not the symptoms.
I would first look for a highly qualified Naturopath who will treat you with food (it is usually this that causes all our illnesses, the wrong combination, the wrong type (white rice flour etc) lack of proper nutrition and so on. It is a science in itself and if your Doc is like ours in the UK they don't seem able to relate any medical problem to diet yet it causes nearly all of them.
Long term drugs merely make matters worse and end up giving you side effects that need more drugs to stop them. I have seen this with my mum.
GERD not helped by any meds 
