GERD Support Group

....And it all began with the onset of Idiopathic Hives FIVE years ago!

(now that I have that out of the way...)

I've always had trouble with my stomach - through my 20's I said "Oh, I guess I've got my mother's nervous stomach", In my 30's I said "My mother's stomach and stress DO NOT play well together"... Now in my 40's - the suffering is so real, so often until I don't care where it came from anymore - I just want all the pain to stop!

I'm on Nexium 40mg Twice daily - every day - an expensive "partial answer" to say the least. Then there are the tests - or the 20% my insurance doesn't pay (thank you Lord for BCBS). But even at that I cannot bring myself to agree to some of the tests.

It's been a decade now since I've drank a nice cold glass of milk - I allow myself Italian ONCE a month, no vinegar based condiments, no oil based condiments , no oils, nothing dairy, nothing tomato based, nothing fried, breaded, or heavily spiced. Not too much caffeine, no carbonated drinks, no fruit juices, nothing acidic - Lactaid Milk? Forget it - Smart Balance butter - forget it, Italian, Ranch, Thousand Island - Nope. Not too much tea either. 8 glasses of water a day - No way (water finds it's way back up almost immediately and sometimes violently.

So I'm stuck with what I call fat foods - white, bland, starchy. Pasta with MINIMAL sauce - bread, lots of bread as a filler, saltine crackers by the dozen

But the GERD isn't the worst of it - Once the Esophageal Spasms set in - Even lean mean has been cut from my diet. Filet Mignon brings on chest pain and spasms that are SO strong till my actual voice box is affected. People no longer look at me like "you look fine to me" - I've been told that I look panicked, wide-eyed and pasty. Then if I try to speak during on - my voice actually drops a few octaves - and anyone who knows me or knows my voice - immediately knows there's something wrong.

First spasm I had - I thought I was having a heart attack. Every symptom of heart attack was present (with the ONLY exception being sweating). I went to ER and was admitted to the hospital - 48 hours later (Nitroglicerian drip in IV) I had not had a single other spasm, after all the tests were completed it was announced that there was not a problem with my heart. Cardiologist said "I suspect Esophageal Spasm - see your GI doctor".

I saw the GI doctor, he said "take more Nexium, sometimes the spasms are just symptomatic and intermittent at best"..... TWO YEARS later - GERD seems to be the underlying problem, but spasm seems to be the primary constant activity. But Barrett's Esophagus was added as an additional diagnosis after the 3rd Endoscopy.

Tests to date - NUMEROUS scratch tests in the beginning - then it was decided that GERD was the reason for the Idiopathic Hives, Multiple Endoscopies with Biopsy, During one Endoscopy the Esophagus was stretched. Barium Swallow, Manometry, (all tests necessary to rule out any problems with my heart).

Medications to date - MULTIPLE GERD medicine (acid reflux) Protonix, Protonix supplemented with OTC Zantac, Histocyamine (*spelling - normally used for excessive sweating), Mast Cell Inhibitors, Antibiotics - Over 5 years it feels like I've been the medication guinea pig. Finally settled on Nexium 40mg 2x daily, Erythromyacin 250mg 1x daily. That's it. Nexium for the GERD, antibiotic for Barrett's (precautionary) - but nothing for the spasms.... And finally an emergency inhaler because I've been told that Adult Asthma Onset is normal for man people with GERD.

It's frustrating - ALL of it. And it's confusing to say the least. Doctors don't quite understand the connection between the GERD and the spasms - so they try to keep treating the GERD hoping that the spasms will heal themselves - NOT. So far I haven't been able to get my GI doctor to even take the spasms seriously - so my last visit I got very irritated with him and asked him how he would like to live EVERY DAY feeling like you're having a heart attack over and over, with your chest being actually physically sore all the time from the spasms being so constant, being awaken at 2,3,4 AM writhing around, moaning in pain. - He told me that if I don't have confidence in him I can always find another doctor.

I'm on the hunt for a new doctor.

I'm like everyone else with constant, severe spasms and GERD - what if one day I actually have a heart attack (I'm 41 now) but I dismiss it as another (though harder) Esophageal Spasm? There's got to be a better answer than "GERD might be causing the spasms, Spasms might be causing more GERD - good luck and live with the pain".

If anyone has ideas, information or encouragement - I would sure welcome it - but thanks for providing a place for me to vent a little - 5 years is a long time to live with intermittent GERD but constant spasms.

Have you been tested for celiac disease? How about Bartonella (tick borne disease that can infest the GI tract)? I ask because my son (11 yrs old) is have spasms -- we have a family history of celiac and he has lyme and bartonella. His GI Dr. will have tests results today or tomorrow -- but in doing research I found a significant number of people findng relief from eliminating gluten from their diet. Might be something you want to consider. Also, if you are to be tested for bartonella -- the regular blood tests by a typical dr may not be good enough -- you need to see what is called a lyme-literate doctor (LLMD). And, for celiac's -- they can do blood work -- but it can also come back negative (mine did). A biopsy is the best -- it will show damaged villi if you have celiac (mine did). Some GI dr's are really lousy celiac dr's -- so make sure you get one that knows celiac. Barretts esophagus is often found in celiac patients. Hope this helps -- and God Bless You -- I know the pain you live with -- don't give up hope.

This is very old so dont know if you are still here and reading but sounds to me like it is a symptom of something entirely different and not to do with your Gerd. It sounds like panic attacks (anxiety) to me. Cause I have both Gerd and panic attacks and they are so close in symptoms but I now can tell which is which. If you are still here please let me know how it is going for you now!!!

Not GERD or panic attacks for my son. turned out to be celiac and bartonella. The celiac's gave him intense GERD like symptoms and pain in his abdomin. The bartonella gave him spasms and lymph swelling which caused intense pain. He has stopped gluten in his diet and has gotten antibiotic and light-beam therapy for his bartonella/lymph's. He is much better now thank God. I know this is old, but I wanted to follow-up post in case someone is reading who could use the advice.