HealingWell
Search Close Search
☰

Constant burning esophagus even on meds

Support Forums
>
GERD & Acid Reflux
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/4/2012 5:52 PM (GMT 0)
I am new to this site and forum.  I spent some time reading everyone's problems and felt somewhat better knowing there are so many of "us" out there. 

My problems go back to February when I started having a feeling in my chest like a pretzel was stuck facing out. Every time I ate anything it would feel "stuck". I cleared these feelings with a cardiologist and he suggested a gastroenterologist. After my first appt. the gastro did an endoscopy. It came out fine except for slight inflammation.  He said reflux and put me on Prilosec. I took it for a month but it didn't work. In the meantime, I landed in the ER because the pain was so bad one day, I was sure it was my heart. The ER cleared me of heart issues and said I had reflux and the pill I should be taking is Nexium. He called it the "gold standard".  He said take it for a week and he was sure the pain would go away...it didn't.  In the meantime, I had all this mucus in the back of my throat 24/7 and I wasn't able to get it out.  I decided on my own to go to an ENT. He put a scope up my nose and down my throat and said it was LPR and I should take Aciphex 2x a day and it should help....it didn't. In the meantime, I developed a constant burning feeling in my esophagus.  It burns so much and I sometimes get a bile taste in the back of my throat when I burp. The ENT added a drug called Ranitidine..it isn't working. So I went back to the original gastro and he said I should see another gastro doctor who does all kinds of different, more elaborate tests. So far I have had blood tests (8 vials), a chest ct scan with contrast, a gastric emptying study and another EKG.  All tests came back negative. The initial "pretzel like" pain has diminished but I constantly have a burning in both my upper esophagus and throat.  I am scheduled for a BRAVO test where a capsule size camera will be placed in my esophagus for 48 hours.

Needless to say as others have, I am totally frustrated, scared and depressed over this.  Prior to February I have never had any issues regarding digestion at all.  I haven't gotten any answers and have been on so many different drugs, I can't even keep track.

I would so appreciate any advice, feedback, encouragement, ideas, etc. regarding this.  So glad I found this site.  mad

I gave your thread a title.  Kitt

Post Edited (jmumom) : 6/4/2012 1:39:30 PM (GMT-6)

Posted 6/4/2012 6:08 PM (GMT 0)
The Bravo test is nothing. I had mine placed under sedation because I can't be still for the procedure.
You do feel the capsule when you eat or move certain ways. I stuck to soft foods and liquids during my testing.
You wear a small receiver for two days and keep a journal of reactions and reflux. It falls off after 5 days and passes with ease. No need to retrieve it. :)

I also had a barium swallow, stomach emptying test, and EDG test. The doctor didn't think the surgery would help me, but it did help me a great deal.
Posted 6/4/2012 6:36 PM (GMT 0)
A test called a pH probe is accepted as the standard for establishing or excluding the presence of GERD so you are on the right track with having the Bravo test done.  Remember that each person is different and a medication that works for one will not necessarily work for another.   Glad to have you with us.
Posted 6/4/2012 7:10 PM (GMT 0)
Thanks for your quick replies. I was wondering if anyone ever heard of such a thing as my situation, where the intial problem is better but it is replaced by horrible constant burning in the esophagus and throat. Can a medication (Aciphex) cause something like this? And are there any other tests that anyone can recommend? I'm sick of tests but have to get to the bottom of this because it is making me very nervous and of course uncomfortable. I'm afraid to eat almost everything even though I have this feeling no matter what I eat.
HELP!!
Posted 6/4/2012 10:39 PM (GMT 0)
I am in the same boat. Feb 22nd ended up in the ER with Chest Pain. Have seen 3 GIs with no diagnosis as all the tests are negative. Still have the chest pain and will see an ENT tomorrow.

No relief from any PPIs. Have tried Protonix, Omniprazole and Dexilant.

I have had some relief from the Koufman diet and suggest you read her book Dropping Acid.

Posted 6/4/2012 10:47 PM (GMT 0)
I am sorry you are going through this as well. It really is frustrating not to mention painful. I hope the ENT sheds some light..mine made me feel good when he said LPR but since the meds he gave me arent' working after a full month, I guess I'm back in the same boat. My next test is the BRAVO test.
I will get the book tomorrow and i thank you for the suggestion and wish you all the luck there is to get to the bottom of this. Please let me know what your ENT says...I hope you get some satisfaction as do I.
Posted 6/4/2012 10:51 PM (GMT 0)
Thanks.

Keep sharing.

Posted 6/5/2012 3:29 PM (GMT 0)
jmumom,

ENT said throat definitely not as swollen as two months ago.  She seemed to think the diet was helping.

She went on Dr. Koufman's web site and changed up my PPI to Lanoprazole double dose for 6 weeks.  Added Zertec double dose at night.

I'm hopeful that I can continue to improve.   Do not lose hope.

 

Posted 6/5/2012 7:15 PM (GMT 0)
Dear LJSZ.  I'm glad you got some encouraging news today. I hope it continues to improve.  I have just been switched to Protonix..that will be my 4th PPI medication.  More tests to come and still no conclusive diagnosis.

I am so glad I found this site...at least it helps chatting with others who are experiencing similar things.

Stay tune and keep posting.

jmumom

Posted 6/5/2012 9:52 PM (GMT 0)
jmumom,

Get Jamie Koufman's book and start the diet.  The meds will work better.  ENT went on her(Koufman's) web site and asked for a recommendation on the drug choices.   Still have the high PPI and H2 antihistamine, but I am encouraged and going to stick with everything for the next 6 weeks.

I have an appointment at the Mayo Clinic just in cast for a complete evaluation there the end of July.  Hoping to cancel that if I am better.

Hang in there!

L

Posted 6/5/2012 10:04 PM (GMT 0)
L,
I was just reading an article about Jamie Koufman's book..I do intend to buy it. In the meantime, have you ever seen a gastroenterologist. I am working with one and and ENT. The gastro will be performing the BRAVO test in 2 weeks to measure the acid. Did you ever have the test? Do you feel an ENT has the credibility a gastro doc would have with acid reflux. I only started with one because I thought the mucus in my throat was post nasal drip.
Did you ever have burning in the esophagus during all this?

jmumom
Posted 6/5/2012 10:31 PM (GMT 0)
Yes, I went to 3 Gastro docs including the head of the department at Shands Teaching Hospital as a referral.  They could not spell LPR and dismissed me as needing pain management.  The two specialties (Gastro/ENT) do not talk.  That is why I was heading to Mayo for the team approach.  (Hope I do not need that).

Jamie Koufman is an ENT and is at the forefront of LPR. The Gastros were no help as all the meds didn't work until I found the diet.  Had Manometry and Barium Swallow tests at Shands.  The 24 hour PH test was next, but the head gastro decided I need pain management next.

That clearly was not what I needed.  I diagnosed myself with LPR after reading everything (including these boards).  Luckily, I bought the book and started to put everything together.   It was me who asked the ENT if she had heard of LPR and Koufman.  She did and went to the website to check on the treatment plan.   She told me I was improving and I am starting to feel better and more hopeful.   Very little help from the docs other than script writing.

Hope this helps you.

Posted 6/6/2012 12:26 AM (GMT 0)
Wow, it sounds like you've been through the ringer. It really is very frustrating and I don't think these doctors get it. I haven't even met the gastro I'm working with. I was referred to him from another gastro after the endoscopy came out fine saying he's done all he can do and this doctor does some "fancy" tests that only he can do. I live in NY in Westchester county so I would think they would know what they're doing. This new guy just sent me prescriptions for all these tests without ever laying eyes on me. The questions were asked by his office assistant over the phone and then prescriptions arrived in the mail. I am seeing another gastro on the 15th for another opionion. It's my ENT who diagnosed the LPR and is giving me the meds.
It sounds like you've been to top hospitals. My brother in law lives in Florida and travels to Shands for things because of its reputation.
You never said what type of feeling (pain) you were having. Mine started with this "pretzel sticking" in my esophagus the wrong way feeling and now it's burning upper chest and throat most of the time.
Thanks for your quick replies...I look forward to them immensely.
Posted 6/6/2012 1:40 AM (GMT 0)
Same pain as you.  Termed Non Cardiac Chest Pain(NCCP). 

I have been the Gastro Route and called a "zebra" as I do not fit the gastro specialist area nor the ENT area.  I had do to this diagnosis on my own with much research and help from the boards.

I'm down here in Florida.  So far I am not impressed with any of the docs.  Most of them should have retired years ago.  They do not seem interested in working with patients who are out of the ordinary main stream.  Seems like they want to see as many patients as possible, so if you don't fit the mold they refer you on to the next level.

I was very disappointed in the Shands treatment as I expected more from a teaching hospital with a good reputation.  But I did make the Mayo appointment just in case none of this works.  I was very encouraged though, by the ENT today. 

 

Posted 6/28/2013 7:45 PM (GMT 0)
jmumom - I have a question for you. I just found your post and i am going through the same exact thing. I am waiting to have the 24 ph test to see if my problems are acid related or not. I too did not respond to any of the drugs. What did you find out from your BRAVO test? What was your diagnosis.

Thanks!!!! I so look forward to hearing from you.
Posted 7/1/2013 12:55 AM (GMT 0)
I have had constant reflux and burning in my stomach and esophagus for almost 2 months now! Went to the GI dr and they were quick to diagnose me with GERD and prescribe protonix which didn't work and then dexilant which again I had no luck with!
I feel best in the morning but as the day goes on, the burning and reflux starts and is consistent the rest of the day. I am supposed to go for a gastric emptying test next. 2 years ago I has a similar issue with my stomach. They did a scope and found nothing.
I've also heard that food sensitivities can cause GERD. I am at my wits end with no relief in sight! I also worry it could be h pylori which causes similar symptoms. I have a 2 yr old and am having anxiety thinking that if it is h pylori, that it could be passed onto her.
Figured I would join this site to see if others have had similar complaints.
Posted 9/14/2013 2:05 AM (GMT 0)
Help!! The last 13 days have been miserable :( went to ER 3 times before admitting me. At 1st felt like something constantly I'm my throat and burping only relived for a second then there again. Them for 2 days constant burning then back to something in my throat feeling. They finally checked me in no meds working they checked heart as they thought that was it ... It was not. Went to GI doc today for endoscopy and he saw nothing! Not one thing!! But I either have constant blockage feeling in my throat or constant burning no relief unless I'm sleeping!! I don't know who else to see?!! What other doctor?! I can't keep missing work I have to go even tho I'm miserable not knowing what this is! :(
Posted 9/14/2013 4:19 AM (GMT 0)
Read this thread, it might be helpful to you:

https://www.healingwell.com/community/default.aspx?f=45&m=2184357
Posted 2/13/2014 6:18 AM (GMT 0)
Sounds like GERD. Medication won't work if you don't change your diet. I'm also facing heartburn and sometimes this burning in esophagus
Posted 9/29/2016 9:30 PM (GMT 0)
Did anyone find any relief on here?
jmumom??? Your symptoms are EXACTLY what I have. I've been in misery for 2+ years now. Been told I have silent reflux. Constant burning 24/7 and I've been given several different PPI's (none of which help). I've been told to try taking pepsin because my acid is "too low" (from other forums). I've tried this and it makes it worse. I've tried eating very healthy and am working out 5x a week. Before this all started I was healthy and had no major issues. I was recently diagnosed with Hypothyroidism and had hoped it was somehow connected, but am finding with that under control the burning just DOESN'T STOP!!!!
PLEASE HELP! I'm desperate. I've seen an ENT, gastro, naturopath, allergist, my normal doctor, gyn...just about anyone willing to listen. I've done an endoscopy almost 2yrs ago now and they found nothing.

Post Edited (burningthroat24-7) : 9/29/2016 3:36:50 PM (GMT-6)

Posted 9/30/2016 12:16 PM (GMT 0)
burningthroat24-7:

You should start your own thread, as the one you are responding to is over 2 years old. jmumom hasn't been around in over 4 years.

Sharon
✚ New Topic ✚ Reply