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Old 06-24-2011, 01:26 PM   #1
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can't breathe

Hi

does anyone out there have LPR? i just got diagnosed with it after 5 years of suffering and i am having worse breathing problems than before despite the meds i am on. Can anyone help or relate? i am feeling very dizzy and fatigued and i have to concentrate on breathing, i am getting very frustrated with this and don't know what to do anymore..any help would be greatly appreciated

 
Old 06-24-2011, 07:45 PM   #2
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Re: can't breathe

I have LPR that has really affected my breathing. The acid irritates my throat and lungs. It also triggers my asthma. I've even ended up needing emergency treatment it has becme so severe.

I have tons of posts on this board that document my ups and downs as I've searched for solutions in how to keep my reflux symptoms under control.

I still have problems, but it has taken working in conjunction with my PCP, ENT, Gastroenterologist and Pulmonologist to get things under control.

Have you had pH testing? If not, I recommend researching Restech pH testing that is designed specifically for LPR. It is different than other pH probe tests.

Have you had a Manometry done to measure the pressure of your LES and UES?

Have you had any barium swallow testing done?

How about an endoscopy?

What treatments are you currently on for your acid reflux? Are you on any asthma medications as well?

What changes have you made to your diet or lifestyle?

I'm happy to share what I've learned through my years of experience if you have further questions.
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Old 06-24-2011, 09:20 PM   #3
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Re: can't breathe

i haven't had much done..i've had an endoscopy done, and i had no damage in my esophogus or a hernia..i just had a barium swallow done a few days ago, and the speech therapist said my e.n.t needs to look at my vocal cords because they may be damaged, or not working right..

i have tryed all kinds of ppi's..my e.n.t just put me on 40mgs or prilosec in the morning and 40 mgs or pepcid at night.. i havent seen much change but i just started this..i have been on many other meds that haven't worked though including nexium, prevacid, zantac, and dexilant
i also have a breathing machine for my asthma just albuterol in it and an albuterol inhaler..but it doesn't seem to help at all..There thinking my attacks are not asthma but vocal cord spasms from all the years having L.P.R and not knowing what it was..

 
Old 06-26-2011, 05:40 PM   #4
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Re: can't breathe

I mentioned that I work in conjunction with my PCP, Pulmonologist, GI doc and ENT.

In addition to the acid reflux treatment, my ENT recommended low-dose tricyclic anti-depressants (Elavil) to help relax the vocal cords as mine are often very irritated. He also stressed the need to stay hydrated to help the vocal cords.

There is a gargle recipe from the Texas Voice Center that he gave me to try as well.
  • 1/2 tsp. salt
  • 1/2 tsp. baking soda
  • 1/2 tsp. clear corn syrup
Add to 6 oz. warmed, distilled water. Gargle quietly and gently for two, long boring minutes. Do not rinse and use as often as necessary to help your dry, irritated throat.

Most of the time, with LPR, once a day PPI's aren't effective. You need to take them once in the morning and again at night at high dosages.

LPR can cause asthma-like symptoms even if you don't have asthma due to acid irritating the lungs.

Aside from the PPI's, what does your ENT recommend for the vocal spasms?

Did your Barium Swallow show acid coming up to irritate your lungs or throat?

My ENT administered the Restech upper pH test. It measures gaseous acid as it comes up and hits the throat. It confirmed my LPR again last fall. Worth considering if you want to confirm it is actually acid causing your irritation.
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Old 06-26-2011, 06:26 PM   #5
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Re: can't breathe

Thanks for the advice..i haven't been to a pulmonologist yet, i was gonna mention that to my dr. this coming week and see who she recommends.
I drink plenty of water so i should be pretty hydrated, but i do have alot of post nasal drip from the reflux and i keep sinus infections it seems like..
How often do you that gargle? just once a day or just when needed?
i was taking my ppi's twice a day but he put my on a higher dosage in the a.m and 2 pepcids at night before i go to bed..it seems to be helping some.
I'm aware the l.p.r causes asthma like symptoms that's why i was saying i'm not sure if i even have asthma, i was told that by the e.r.
I'm also kinda wondering if i'm refluxing bile because i just had my gallbladder removed and my reflux has been worse than ever since then.
And yeah they seen a little acid in the barium swallow but i had taken my ppi that morning becuase they said to take regular meds that morning so it may have stopped some of it.
I'm not sure what else my e.n.t will recommend, i haven't seen him since the swallow. He's only in my town 2 days a week though so it's kind of a wait to see him.
I will let you know what he says.
Thanks for the help again!

 
Old 06-26-2011, 06:55 PM   #6
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Re: can't breathe

My reflux is unusually severe. I ended up having surgery a couple years ago.

One of the "side effects" of the surgery that I didn't expect was that my sinus issues improved. I'd always attributed my chronic sinus problems to my severe allergies. Since the reflux surgery, I've only had one sinus infection in 2 years compared to 4 infections I was averaging per year before. It is amazing how much everything is interconnected.

If you are concerned about bile reflux, you might be better seeing a gastroenterologist next instead of a pulmonologist. They can provide you with good support on the digestive side of things.

I used to gargle throughout the day during months when my symptoms were flared up. You can gargle as frequently as you find you need it.

If you are getting a lot of PND, the thick mucous can make your throat worse. Are you taking any guaifenesin (mucinex)? That is another recommendation my ENT makes as well as the low-dose elavil for the LPR irritation.

Good luck.
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Old 06-28-2011, 10:06 AM   #7
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Re: can't breathe

Hey again
i know you haven't responded again but i hope u read this... my l.p.r has been like this for about 4 months now the difficulty breathing and all.. also i have been feeling very dizzy and off balance and feeling like i'm gonna faint alot..even having trouble concentrating. Did u have any of these symptoms with l.p.r? i have asked my dr but she didn't seem to have any answer. The first month i had a sinus infection and ear infection and had fluid in one ear so that made sense to me to be dizzy but it hasn't went away and the e.n.t didn't mention fluid in my ears or anything and i have been on antibiotics again for sinus infection.. its really aggervating especially having the breathing difficulties with it ..

 
Old 06-28-2011, 10:22 AM   #8
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Re: can't breathe

Hey..i didn't realize u had responded..
my dr. has mentioned the surgery to me but i'm trying to try anything and everything before i consider that.. i just had gallbladder surgery and i really don't wanna go through surgery again.
I do get alot of mucous in my throat, ever since i had my adneoids removed i get it even more. I'm constantly spitting it out. Did u use mucinex for sinuses? Do they even make one for sinus congestion? i have taken mucinex for chest congestion before.
Here lately my head feels like it's gonna pop and my ears feel full and it's not going away like normal but i can't blow my nose and get anyting out, it's constantly going down my throat...i can't believe l.p.r causes so much trouble it's crazy how it messes with everything..

 
Old 06-28-2011, 08:46 PM   #9
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Re: can't breathe

Hi.

I don't blame you for not wanting to go through another surgery. I wouldn't recommend surgery until you try everything else possible. As I said earlier, my LPR is very unusual in how severe it is. A couple of my specialists said it was the worst they had ever had in their clinics/ specialty offices so some of what I've experienced is on the extreme side. Over a series of years, I modified my lifestyle and diet and tried all of the homeopathic and medications out there for the acid reflux and asthma it was triggering. I chose surgery when my lung irritation became so bad I had to seek emergency treatment because I almost stopped breathing. I'd been through a very bad period prior to that though.

I never had dizziness with my reflux. I did have shortness of breath and chronic coughing. When I had "flares" of reflux symptoms, I would get so worn down over time from not being able to get good oxygen. I would get light-headed when I couldn't breathe. I was very worn down both mentally and physically over the months of the "flares" also.

I can relate with the stuffy ear. I did have an ear that was chronically stuffy and wouldn't pop for about 1 1/2 years. Turned out I have TMJ and my lower jaw was pushing back a bit towards my ear. It took a splint and and some therapy to get my ear pressure to equalize again.

The mucinex helps thin the mucus from your PND. For sinus congestion, Sudafed (the real stuff behind the pharmacy counter) is probably as good as anything. I also had luck taking Allegera-D as well since I also have allergies.

Are you using a neti pot to keep your nasal passages rinsed and hydrated? Regular use of the neti pot can help over time. If you don't want that, a good saline spray helps. I prefer Xlear the most and Ayr next for that. Keeping your nasal passages clear helps keep your sinuses from being blocked as often.

I know there is a connection to the acid reflux and sinus problems for some people. That was the case with me. It is a catch 22 for treatment though. In my case, I just went full-on with treatment for both to get things back under control, but finding the right balance was hard.

I used to have chronic sinus infections. Much of the time, it would take multiple rounds on high dose antibiotics to get an infection licked. I frequently ended up on steroids as well to get my breathing back under control.

Take care,
MountainReader
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Old 07-03-2011, 10:04 PM   #10
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Re: can't breathe

Hi..
i'm kind of hoping surgery isn't down the road for me...my flare ups last 4 to 6 months, and the breathing has never been the same since all this started 6 years ago.
my dr. also told me she has never seen anybody with this many problems from l.p.r.
I haven't seen any relief at all either from any of the p.p.i's i have tryed or any other medicine.
I never had asthma until all of this started either so i have been told l.p.r was probably the cause of it since i didnt have it as a child. i'm just hoping for my life back in some kind of way without having to go through surgery.
i just go some mucinex for sinus congestion and it was the good stuff behind the counter lol..hoping that helps with that part.
i have to see my family dr. tuesday, she is going to refer me to a pulmonolgist..E.N.T said i should see one to try to get my asthma under control with this. Although he didn't have many more answers for me other than keep taking my medicine and come back in a couple months. I wasn't to pleased with that considering the speech therapist that was present for my barium swallow seemed more concerned about me. She said she was gonna talk to him personally about looking at my vocal cords but he said he already did that when i asked and said he didn't see anything that jumped out at him as an emergency. I also read on the barium swallow results it said to follow up with the speech therapist for her input and he didn't do that either. He just looked for the key words that pretty much i wasn't aspirating when eating. I think i may talk to my dr. about how to get ahold of the speech therapist.
it just all seems like such a run around and i feel like i have been going in circles.
I am using a sinus rinse the e.n.t recommended, it helps i guess...just hoping for more out of everyting and anything i guess..


 
Old 07-03-2011, 10:18 PM   #11
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Re: can't breathe

Hi again,

My flares of symptoms usually last about 4 months before I re-gain control. I have acid reflux 24/7. It is how well I'm keeping the symptoms under control that is my challenge. It doesn't take much to trigger extreme acid irritation.

My Pulmonologist was actually the one who ordered my Esophagram and Modified Barium Swallow. The speech therapist was there for the first part. She actually pointed to the acid coming up to my lungs and throat as the test was progressing.

I developed asthma as an adult as well. For me it is an allergy-asthma-acid reflux cycle that I get stuck in.

I took Advair and Singulair for years along with Albuterol to help with my asthma symptoms.

Hopefully the Pulmonologist will be helpful for you. Mine absolutely understands the acid-breathing connection.

Unfortunately, it took working with my PCP, Gastroenterologist, Pulmonologist and ENT together to actually get a handle on getting my symptoms under control.
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Old 07-03-2011, 10:28 PM   #12
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Re: can't breathe

hey..
see i'm thinking mine may not have lasted this long, it was already flared up bad for about 4 months and then the gallbladder problem arose and i had to have surgery which just threw my whole body off and i have had the hardest problem getting it under control.
I also have been on singulair and albuterol but haven't been taking my singulair becuase i wasn't seeing a difference, i may need to try it again.
It has never taken anything to trigger my acid, i wake up and go to sleep with it and it's been like that as far as i can remember. Water even gives it to me bad.
I drink nothing but water now and don't eat anything greasy, i'm to the point where i don't know what to eat that is totally normal anymore.
i'm thinking my stomach may be irritated from the gallbladder surgery becuase it has to learn to function without it.
i just hope it gets somewhat under control before to long. I have the kind of job that i can't keep staying out of work with, and i can't afford to.
hoping the pulmonologist can give me some help....

 
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Old 08-08-2011, 02:14 PM   #13
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Re: can't breathe

I've had breathing problems for about two years. I attributed it to severe nasal congestion and anxiety. I've had a few surgeries to open up my nose, but that still didn't help. Sometimes I had only a partially congested nose, and had breathing difficulties, which I couldn't understand, and which were attributed to just anxiety by my family and by my ENT.

Over the past month, I've came up with pretty bad reflux, and also more problems breathing, but I noticed that when my reflux was well controlled, my breathing was feeling better. On accident one day, when I was having breathing problems, I took a Pepcid AC, and it ended up helping with it. I have confirmed that this works for me several times more. In summary, I'm really hoping that I can resolve my reflux, since I now likely know where my breathing problems come from.

 
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