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Old 04-08-2008, 08:30 AM   #1
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nighttime reflux / throat LPR problems

Hello! heres my history.

I've had problems with heartburn for a long time, probably over a year. But it was only six or seven months ago I realized it wasnt simple heartburn. It would hurt a lot in my chest area & would get radiating pain when swallowing food (food was sharp as knives). The acid never stops at the chest area, it always comes up into my throat, I can feel this. A consequence of this was a very swollen throat (seen by an ENT, who diagnosed me with reflux).

I have been on nexium 20mg once a day (first two weeks was two a day) for about 3 months now. It only started working about 1,5 in. But yes, it is working (I want a higher dose and I know it would probably be better for me, but I am young and they don't want to describe a strong dose). Not fully though. I was at the ENT three weeks ago or so and she said swelling in my throat is going down for each visit, and that I should be fully healed within a few months (she said it could take up to six months for throat to fully heal).

I don't get that "burn" a lot anymore, however, I still experience problems. I sometimes get a "cold sensation" (funny huh) when I breathe in, I usually experiece this at night. its very weird. I also, after almost every meal, have a new symptom that I have never experienced. This popped up two weeks ago or so. The left side of my throat (and my left lymph node) will feel swollen and stiff, and sometimes like my tongue is pulling towards the left. This leads to a feeling of my throat being tightened and that my airway is diminished. It doesn't hurt much and its not so bad that I can't breathe or anything, its just very uncomfortable. I very seldom feel that my throat is 100% ok. My doctor put me on gaviscon 3x a day and at night aswell in addition to nexium. I also have white spots all over the back of my tongue, I don't know if this is related.

I was at an upper endoscopy this monday. It showed nothing. Why? Because I had been under treatment for three months. Because of this there were not sings of reflux that could be spotted during the endoscopy. Therefore he couldn't diagnose me, which is what he wanted. The throat takes a lot longer to heal than the esophagus, so even though my reflux symptoms haven't dissapeared (they are primarily throat related at this point) they can't confirm it from an endoscopy. Because of this he (gasp) wanted me to be off meds for 1,5 months & go back to eating everything on the "no-no" list so he could properly diagnose me. I refuse to do this. Why would I want to undo the healing and add to that, feel bad for 1,5 month? Therefore, I plan to continue the treatment with my ENT even though we don't know the exact reason behind my problems, but medecine is working, which is what counts.

Now for my question (hinted at by the title of this thread). I have done EVERYTHING to prevent waking up with a sore/irritated throat (I of course don't eat 3h before bedtime, eat light and healthy, I sleep on a wedge & all of that stuff). I woken up like this every morning for months, and I am sure this delays healing as it points at nighttime reflux. I have tried apple cider vinegar, which worked 90%. But, because of an incident with it (I almost choked when it got into my airways) my ENT doctor banned it for me. She hadn't heard of this treatment and also doomed it as a stupid thing to "add more acid to the body". but it is what has helped me the most at night, for reasons I can't comprehend. Sadly, this is ruled out now.

I am now taking gaviscon at night, sometimes it helps at least 70% but the last couple of mornings have been very sore, if you catch my drift. Throat has been incredibly sore in the morning. It goes away after about one hour and plenty of drinking,but it takes a bit longer for throat to be completely cleared of problems (I usually feel very thick in the throat).

What can I do about this? It feels like I will never fully heal when I cant prevent nighttime reflux. A stronger dose of nexium doesnt seem to be an option. We don't really make a different between LPR and GERD here in Sweden, its all filed under the same section. I don't know exactly what I have, but since a lot of my symptoms are throat related, I am guessing its LPR (like I said, acid easily reaches my throat). Then again, I have heartburn symptoms and I know a lot of people with LPR don't. But maybe I am one of the few. Or I might have both, who knows!

And even though the medicine helps, I am worried about more symptoms popping up. especially the swelling/sensation in my throat. today, it has been constant and been pretty bad all day. Do you agree on that my dose is too low or am I just too impatient?

if anyone has any tips I would be grateful, any other comments are also welcome. as you can see from my post I have many concerns!

thanks

Last edited by towersteel; 04-08-2008 at 12:52 PM.

 
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Old 04-08-2008, 12:53 PM   #2
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Re: nighttime reflux / throat LPR problems

Hi,

thanks for taking the time to type your post!
I wish I had some advice to give. Seems like you've done all kinds of research, are extremely well informed about your condition and somewhat at a standstill right now. When reading the posts on this board, I find that our symptoms vary though, of course, there's always a common denominator. Do you get nausea? That's been a big issue for me. The throat situation (a feeling of a lump blocking the throat) is always there - easily aggravated by stomach acid coming up, smell of a chemical or grease, and other, yet unidentified triggers. Once the irritant does its job, my throat starts to feel very itchy and constricted, my eyes start to water, and coughing or choking follows.
I am still trying to figure out if there's anything I can do to prevent this from happening. I take 40 mgs of Nexium daily. I was also told to take Gaviscon to help with my breathing (???) difficulties early on. I haven't tried it to see if it works. I am on too much medication as it is and my stomach suffers because of it.

You say the Gaviscon helps you - in what way? What does it do for you?

flowergirl

 
Old 04-08-2008, 01:04 PM   #3
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Re: Tried everything to prevent nighttime reflux

hey!

the gaviscon doesn't help much, if so slightly. it helps temporarily but not more than that (seems to help the flare ups more than the throat problems that I always get after eating). Like I said I am quite new to it still so am yet to know how well its gonna work, but its been working OK to badly so far. all the H2 blockers I've took have helped nothing at all so its at least better than that. but like I said what I really want is some more Nexium, because that has the best effect. In Sweden doctors are very careful about prescribing medecine, at times too careful.

I'll take gaviscon at night again (maximum dosage, its 10-20mg), lets see what my throat is like when I wake up.

I had the lump in throat problem for many months. I still have it now and then but not as often anymore. I know this feeling and it used to (and when I get it) annoy the hell out of me! I was always very aware of not clearing my throat though, and instead drank a lot of water. it didn't help of course. but somehow, its gone away almost completely now. but yes, that is a symptom I have/have had. it was one of my main concerns at the start.

I don't experience nausea, at least not often and not that I know related to LPR/GERD. I do recall when i think about it nausea when it was really really bad and I just started nexium treatment. then, I thought it was a side effect from the pills. but since it dissapeared it might have been related to the disease. but I wouldn't say it was a main symptom of mine and never has been. Most of it is throat related.

Last edited by towersteel; 04-08-2008 at 01:07 PM.

 
Old 04-08-2008, 01:17 PM   #4
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Re: Tried everything to prevent nighttime reflux

Thanks for sharing!

I think it's to your advantage that your doctors do not prescribe pills freely. Makes you explore all possible alternatives. I heard that there's a definitive trend in some European countries toward more natural means of attaining good health - wellness - by using naturopathic treatments. Apparently, any costs incurred in purchasing herbal treatments are reimbursed by the government/insurance companies in some countries. It would be nice to see some of these practices initiated over here!

I hope you'll find a solution. It may take a while - I would imagine that unless something puts an absolute stop to your acid reflux, there will always be some irritation going on at night while you sleep - prolonging the time it takes for the throat/esophagus to recover.

Good luck,
flowergirl

 
Old 04-08-2008, 01:25 PM   #5
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Re: Tried everything to prevent nighttime reflux

I agree that its good they don't just prescribe things here and there. but if I do indeed have LPR - I have been under the impression that LPR needs to be treated with a twice a day medication. because it doesn't work around the clock. I really think I need this because I have nothing to help me during the day, everything gets wasted during night (and I need this too because of bad nighttime reflux).

I have probably tried everything I can so I really doubt theres anything more I as an individual can do to make this better. Right now I am a bit bummed because it feels like my left ear is going to blow up! the stiffness sometimes reaches my ear. I also feel when describing some of these symptoms to my ENT doctor that she is surprised to hear they exist. and she seemed worried herself that I wasn't getting better at a quicker rate. That's when I get more worried - you know!

I am staying positive and thinking positive thoughts!

 
Old 04-13-2008, 11:12 PM   #6
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Re: Tried everything to prevent nighttime reflux

Have you raised your bed? Alot of nighttime reflux sufferes raise their beds about 10 inches(I think its 8-10). I have LPR and NOTHING helps my throat, its been red and swollen for over a year. I also have the stiffness and a bunch of swollen painful lymphnodes. God I would give anything to get rid of this ****!!! Im going on the specific carbohydrate diet pretty soon but Im not getting my hopes up! Good Luck!!

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Old 04-14-2008, 12:32 AM   #7
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Re: Tried everything to prevent nighttime reflux

^ yes I have. I also experience swollen lymph nodes/stiff throat & face when the reflux is at its worst. Sometimes these symptoms come without being related to heartburn. this is what makes me think I have both LPR & GERD.

Anyway I actually managed to stop the nighttime refluxing. Four nights in a row without a sore throat in the morning! It was a high dose of Gaviscon that did it.

I still have some weird symptoms (dry & itchy throat is most prominent at the moment, sometimes leading to breathy phonation. this comes and goes, it feels like its every other day. can it be allergy related too?) but I feel like I am moving forward. We'll see what my doctor says on Friday.

good luck to you too by the way!

Last edited by towersteel; 04-14-2008 at 12:33 AM.

 
Old 04-14-2008, 05:43 AM   #8
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Re: Tried everything to prevent nighttime reflux

Hi,

what do you mean by breathy phonation? Your symptoms sound exactly like mine. I just woke up with a very itchy throat - so itchy it is making my eyes run. I know it is not from an allergy. This has become normal for me and often lasts throughout the day. I have had to stop taking one of my meds for two days (a beta blocker) prior to a test. Strangely, this has resulted in a non-stop reflux, extremely runny eyes and has made it difficult to take a deep breath.

I am so glad to hear you are improving! I've been told to use Gaviscon (on top of my PPI) when I plan on being active. I have not tried this and feel very skeptical about it being beneficial. This is why I am surprised to hear it seems to have worked for you! I hope you will continue to feel great!

flowergirl

 
Old 04-14-2008, 08:15 AM   #9
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Re: Tried everything to prevent nighttime reflux

hey !

breathy phonation as in when phonating, words will be breathy or rather, sound will cut off and become but a breath. sometimes theres a delay in phonation aswell.

I am better but yeah I still have some throat symptoms. I'm not saying that I'm good yet its just I'm happy I found a solution to the topic of this thread...

I'd say try Gaviscon. its the least you can do. and be sure to take the maximum dose (20ml, at least for me).

Last edited by towersteel; 04-14-2008 at 11:32 AM.

 
Old 04-14-2008, 02:21 PM   #10
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Re: Tried everything to prevent nighttime reflux

Ive never had allergies and sinus issues like this until I got reflux. Certain odors make me sick, my mom was using some kind of spray the other day and my eyes immmediately started watering and itching and nose started itching and I felt pain in the left side of my face. Ughhh. I drink gaviscon sometimes, I drank some last night before I went to bed. I dont think I can tell a difference.
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Old 04-14-2008, 07:59 PM   #11
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Re: Tried everything to prevent nighttime reflux

Kelli,

do you think the "strong odor" reaction is GERD related? Do you have asthma?
I wonder!!! It is so good to hear others experience the same thing!! (Sorry!!) I am just glad to hear there are more of us with this symptom. Someone is bound to find out what causes it!!! When you do, please post it.

 
Old 04-16-2008, 05:00 AM   #12
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Re: Tried everything to prevent nighttime reflux

Well, the joys of LPR/GERD! you are happy and then one day....

I am just frustrated. I feel sick all the time. I am extremely hoarse and feel weak, even when talking. People tell me I talk quietly all the time because I can't raise my voice... If I had to scream or was in danger I would be doomed! My throat aches, my left ear feels full a lot of the time and I get headaches... I will be speaking over the phone and feel my throat go weak and my voice will just dissapear.

It goes up and down as you can see, sometimes its okay and I feel positive but I have learned by now it always comes back.

I have an appointment this friday, I feel very nervous for it. I feel like I need to get a lot of questions answered and a proper dosage of medication. the medication just isn't helping enough. I can feel it trying, but it never lasts through the day. unless I am very lucky and I go "oh, maybe its gone now!". but it never is.

Heartburn is almost gone now, but throat problems persists. I am now pretty sure I have both LPR and GERD, and that my GERD is under control but that the pills aren't strong enough to deal with the LPR.

It's amazing how much this thing controls your life. I haven't been myself & really happy for about 5 or 6 months. I feel like I have lost myself in the sickness.. it sounds really dramatic but I really do. its not like having the flu for 1 week. this drains you because it just never goes away...

so I am brining papers about LPR to my doctor this friday and texts about proper treatment. She might get offended, but at the moment I couldn't care less. I feel like I need to prove to her that these are symptoms that not only I have, but that are connected to this "disease" - that is rather common.

I have a very good immune system and almost never get sick... I guess this is what life does as payback time!

Last edited by towersteel; 04-16-2008 at 05:02 AM.

 
Old 04-16-2008, 05:42 PM   #13
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Re: Tried everything to prevent nighttime reflux

Yes Flowergirl I do think that it is related. I think the LPR messes up your sinuses soooooo bad that anything is possible. No I dont have asthma, never had any health issues until I got acid reflux.
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Old 04-16-2008, 10:54 PM   #14
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Re: Tried everything to prevent nighttime reflux

Thank you for responding, Kelli. As with towerofsteel, my voice comes and goes. It seemed to have dissapeared early this morning. All I could do all day long was croak like a frog when trying to speak. We have to attend a seminar tomorrow. I will try to avoid talking and just listen. My throat and ear hurt as well. I hope the throat at least is better in the morning! That would be nice.

FG

 
Old 04-18-2008, 12:08 PM   #15
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Re: Tried everything to prevent nighttime reflux

I was at the ENT today.

I went there, fully prepared. I wanted to make sure I said everything I wanted to say.

When i told her about the throat constriction, swollen lymph nodes, fullness in ear and fever like symptoms... well she didn't know how to react. people aren't lectured on LPR. she went "well I can't help you with this. I think this is anxiety related. I think its due to panic attacks, because judging by your recent visits, you seem like a very anxious person". Well of course I am anxious because I feel horrible!! I told her I had to stay home because I've felt incredibly sick some days and she just went "why would you stay home sick?". like she didn't know how bad it was.

So it didn't start out well. felt like she didn't believe me (if she had read up on LPR she'd know before hand).

Then she looked down my throat.

When she was done she looked VERY concerned. I went "whats the matter? is it that bad?" and she went "have you vomited lately? your throat looks like that of a chain smoker".

So yeah, it didn't look good. and no, I haven't thrown up lately.

From then on, she took me more seriously.

She put me on nexium 20mg x 2 (twice a day) instead of the once a day treatment. I think this is what I needed - a better dosage, so its at least a start. I did some blood-tests to send to the lab. Don't know if they will show anything. I'll continue with the Gaviscon aswell.

In two and a half weeks time I am going back and we'll see if its looking better.

.

Last edited by towersteel; 04-18-2008 at 12:10 PM.

 
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