Hi everyone,
Im new to the forum. I was diagnosed with gerds about a year ago. My symptoms wre severe heartburn, reflux of acid when sleeping, lump in throat, pain in back around shoulder blades, tightening of throat, and spasms in my esophagus and throat. I was put on protonix once a day. After changing my diet, and taking the pills, my symptoms subsided, but never fully went away. About a month ago, after having a stressful week, I developed a new symptom. It was with my swallowing. It seemed as if my swallowing rerflex was impaired or almost gone, even when swallowing saliva. Needless tosay, this frightend the heck out of me and I went running to Dr. She sent me for a barium upper gi series, and results showed full reflux from lower esophageal sphincter to upper esophageal sphincter, hiatal hernia and gastritis. She put me on zoloft hoping that would help ease the spasms,and changed my med to nexium one time a day. She told me that the swallowing prob was probably cfaused by stress which in turn created more acid and irritated the soft tissues in my throat which causes the swallowing issues. The swallowing issues seemed to go away for awhile,but have returned again. Not as bad, but its there. Whenever it happens, I freak out and have a panic attack because I imagine all kinds of bad things. I have to remember that the gi test came back with lpr and gerds, and nothing "bad" going on as far as a tumor or anything...However, my anxiety likes to play tricks on me at times which only creates more acid. I am hoping that someone here can help me and let me know that I am not alone with these symptoms. I really need some reassurance from people that are going thru the same thing. Also, from all the research that I have done on LPR, it seems as if the standard treatment is 2 doses of ppi, and my dr has only given me one. Any suggestions or reassurance from any of you would be greatly appreciated right now! Thanx for reading.
~Rose

Hi Rose,

I also had a very similar situation-lump in throat, sore throat, waking up at night, throat clearing, shoulder blade pain, etc. Also I did the PPI twice a day for awhile. Although the PPIs helped, they did not solve the problem. It has been a long road and I'm still on it. However, I have learned some valueable things along the way:

1. Stress level/anxiety is a huge factor. Makes sense. The more strange the symptoms the more anxious you become and it's a nasty cycle. I am a "Type A" personality and tend to worry a lot. That seemed to really fuel all the reflux problems. I had to really work on that and it has helped A LOT. When I have a bad day now I think "OK, today is a bad day, tomorrow probably will be better. And if not, this is not going to last forever." when before I was prone to all or nothing type thoughts: "Today is a bad day, I guess this thing is coming back and I'm going to feel like this forever. It will limit my activities from here on out. What's the point?!" I know it's hard not to be frustrated and scared but attitude can make you or break you with this stuff.

2. Any underlying medical problems: work to control the things you can-weight, diet (caffeine, alcohol, fatty foods, spicy foods). Also are there any other health issues playing a role? I've discovered I have low thyroid and starting meds for that have helped my reflux a lot. Low thyroid can slow your digestion, making reflux more likely. If you do check into thyroid levels, know that many doctors are unaware of new recommended lab levels, so research your levels.

3. Be your own advocate: A lot of my doctors wanted to spend about 5 minutes with me, prescribe PPIs and send me home. When the meds didn't work well, I was told "Well they should work" with no further advice. Don't let that happen. Do your own research and push if you have to. The average office visit lasts 8 minutes. You have to be your own advocate. Come with your questions and ask for the tests/referrals you want. Remember which which wheel gets the grease. Don't be afraid to change doctors if you need to.

4. Find support: That can look different for everyone. Maybe it's prayer. Maybe it's friends/family. Maybe it's counseling. Or a sport. Maybe it's taking care of yourself in some other way like an activity that distracts you/brings you joy. Don't let your health become the focus of your life.

Anyway, not sure if any of this has helped at all, but know you're not alone and it will not always be this hard. You will get it to a manageable level with some trial and error. Good luck!

Thanx for your response and advice. I do need to stay more positive, its just hard when I cant swallow...that freaks me out. But, I will try to relax more and try to think of something else besides this horrid condition. Thanx again!

Hi...I had the exact same problem. I came home from college in May, was fine, and by June, couldnt swallow and wasnt eating. I can tell you that it turned into a psycological mind game. I really could swallow, but had this innate fear of doing so. You need to relax...try some deep breathing, meditation, yoga...I have horrible LPR and believe the only reason I have seen any improvement is Mind over matter. Good luck!

hi..thanx for ur response. i can see the same thing happening to me now. Im afraid to eat anything, because of the swallowing problem. I know in my heart, that if I have a "swallowing episode", I should just relax and take a deep breath and try again, because I know what it causing it..but sometimes my head plays tricks onme!...I know i need to relax, and Im working on it. Thanx again

I Have The Swallowing Problem Too. It Feels Like My Throat Is Closing Up/Tightening. I CONSTANTLY Have To Clear It. I Have It Right Now, Its Difficult To Even Swallow Saliva. I Have LPR.

I find myself swallowing a lot. (Just saliva). I don't know why I do it. Is it normal? My mouth is not dry at all. Maybe I am overproducing saliva or something. I have the knot in my throat feeling all the time. So maybe that forces me to keep swallowing. It's annoying.

FG

Hi kellir,
Sometimes i cant swallow saliva either! With me its like my throat goes numb for a second and i forgot how to swallow....and i become so aware of every darn swallow of saliva. It drives me batty. How long have u had lpr and what are u taking for it?

Hi flowrgirl,
I notice the same thing with me. Sometimes I think that im over producing saliva...or maybe its because im very selfconcious of swallowing now, that I keep swallowing. Strange isnt it?

I think im overproducing saliva too because Im CONSTANTLY swallowing, I swallow like every 20 seconds but I thought maybe it could be the post nasal drip that Im swallowing[who knows]. My mouths not dry at all either.

Yankee sometimes it feels like my throat is numb too. Ive had LPR for about 8 months. Ive been taking prilosec but the only thing it seems to help is the heartburn but I dont watch my diet either:/. My symptoms are pretty severe so Im going to try nexium pretty soon. ITs SOO frustrating!!

Hi again kellir,
My heartburn seems to be under conrol now too...but, I think the LPR is much worse than the heartburn ever was. Sooo many symptoms. I was on protonix for almost a year, and it helped with the heartburn but not the LPR. On nexium now. Dr wants me on that for about a month. Im only on one dose a day though, and Ifeel that I should be on double dosage. My ears plug up really bad too sometimes, and I cant hear. That is sooo annoying. I am trying not to let this disease consume my life, but its so hard. I also get spasms in my throat and in my esophagus. Almost feels as if somehitng is moving in my throat. I really hate this thing, and I wnt to get it under control. Im sooo sick of feeling like this.

I too feel what seems like a slight movoing in my throat - I always have wondered what that is. It's a scarey feeling - and sometimes heart palps go along with it, but not all the time. Is it a spasm from gerd?

Hi jil,
I think it is either some spasms or the acid moving around. It is an odd feelig isnt it??
Do you get esophageal spasms as well? Those are very painful for me when I get them. Feels like someone is squeezing my esophagus up and down.

I'm having a really bad time right now and have what I think is "waterbrash." Meaning acid and salava mixing. Sooo much mucus and feel like I need to and cough it out. This stuff has consumed my life.

Charla

Hi Charla,
I have never heard of waterbash. I wonder if that is why I feel like I always have so much saliva? I never knew how miserable acid could make me feel! This condition can be horrible and does consume my life as well. I always have to think about what Im eatting...how it will go down...How it will come back up...Gone are the days of dining out (at least right now). I have come to realize that food was much more than nourishment for me, it was a way to socialize. I miss that. I have to hope that we will get thru this, and feel better after we start to heal. Keep the faith!!
Rose

IT is a very odd feeling. I don't think I get spasms if they are painful - this isn't painful, it just feels like something is slowly creeping up my throat, and it doesn't burn at all, and sometimes if I swallow the feeling goes away, and other times it just stops on it's own. I know you can have reflux and not feel the typical heart burn pain either - I really don't get the burn, and that's what scarey to me. I believe I have had this for years and never really knew what it was until 2 or 3 years ago, maybe even longer. When I was early 20's I started noticing heart palps, mostly when my stomach was empty, or when lying down at night - had an echo and no problems, then later on it was happening again, so I worried constantly, then 9/11 happened and it scared the willies out of me, and I had a lot of anxiety, etc., etc., the suddenly I couldn't swallow, felt like a golf ball, and burning stomach pains, lost 11 pounds - found out acid reflux. I take aciphex - that really helps, but sets my gastro tract off some days I think. It's never ending. The heart flips used to scare me alot, then they didn't, now they are bothering me again. I had an echo this past friday - no news is good news so far I guess. But then again I wonder if it is heart flip flops or just gas moving around the esophogus - they are so close together.

I have always had heart palpitations since i was a little kid. I have read so many people have palpitations with gerds and lpr. So, maybe its connected with me too. That feeling like something is moving in my throat almost feels like something is crawling around in there!! Its so strange! Another common thing is anxiety. Seems we all have that too! But its almost like, what came first the chicken or the egg?...what came first gerds or anxiety? I get so worked up and nervous over some of these symptoms even though i know what they are. I have had heartburn almost all my life...and i remembr having the burnign throat for many, many years. So, I suppose I have had some damage, which has led me to this point. Right now, my heartburn has subsided quite a bit, its the LPR that makes me crazy right now. My upper gi barrium showed reflux involving both sphincters, so Im lucky enuff to have gerds and lpr.

What is LPR? I see that alot referenced on the site - maybe I know what it is and don't realize it. Yes, anxiety comes with it. Last night again, and this hasn't happened for a long time, lying on my stomach trying to sleep, suddenly I feel a small burn under my ribs and then I get this like flash, almost like a hot flash, but not really a hot flash, like a rush of warmth up to my head! Then it goes away in a second, so I figure it's reflux acting up or anxiety, but two nights in a row when laying on my stomach it happened. I'm on aciphex 20mg a day - only been on for a week (I hadn't had any problems for a while, now they are back), so I guess I have to give it some time.

The crawling in my throat is nasty. I first noticed that when I Was first diagnosed, abut 6 years ago. And because it didn't burn I never thought I would have acid reflux, until they scoped me and my esophogus, lower, was enflamed. I may call my dr. back in a week or so and ask if we can do another one, it's been a while, and lately food feels like it is getting stuck, etc. I worry about damage. So now I'm on the aciphex for 3 months to start. Hopefully some of that crawling feeling will go away!

Hi Jill,
LPR is short for laropharyngeal reflux. Meaning its in the throat. We have two sphincters or muscles by our esophagus. One is at the bottom, near the stomach, and one is at the top near the throat. When they dont close properly, the acid shoots up into the esophagus and you get the heartburn sensation. When the one at the top doesnt work properly, it shoots up into the throat and you get the acid in the throat known as lpr. With lpr, we dont always feel the burning sensation because the acid seems to move quickly up the esophagus and sits in our throat area where the tissues dont express the burning sensation. Howevger, this tissue is even more sensative than the tissue in the esophagus, so that is why we have even more severe symptoms when we have lpr. It is also much more difficult to treat and more stubborn to control. By your symptoms I would think that you also have lpr. Some drs dont even seperate the two as two seperate conditions,they just say gerds, however it is two seperate conditions and some people can have one without the other, and some people are lucky enuff to have both!
You mentioned sleeping on your stomach at night. If you sleep on your left side, and head propped up with pillows, you might notice some relief at night. When sleeping on your left side, your esophagus is at an angle which doesnt allow the acid to shoot up as easily. It may take some getting used to, but it does help. It doesnt help completely for me, but it does help somewhat. Sometimes I get sick of it tho, and i move around!!...but give it a try. They say that it helps prevent some damage at night,so I try and do it.
I worry about the amount of damage I have also. Ive had symptoms for years and never thought it was serious until it got bad....Heck, I worry about everything!!...I try not to focus on it too much, but as Ive said before its awful hard when i cant swallow properly. Its always there...and seems to control my life.

When I Was at the dr. a few weeks ago, he mentioned scoping me again, but wanted to wait till I Was on the aciphex a while - today it cleary isn't working. I've got on and off burn in my chest, right at the sternum, and I've chewed a couple of tums. Soon as I swallowed them, I felt the gas gurgling around and churning and then I finally started burping. Can't stand it. I think I'm gonna call him back this week and say lets do the scope, I'm worried about damage. I have started exercising again and have lost a few pounds this week by really watching what I'm eating and I felt a difference the first few days, but now today it feels bad again.

jill,
There are so many questions dealing with this condition. But one thing I know for sure is that you can feel pretty good one day, and then bad the next. Somehow, we have to just keep on keeping on! When you have a few bad days, try and remember that there will be good days again....