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Acid Reflux / GERD Message Board

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[QUOTE=emwitty;4755226]Thanks for all the words of encouragement and tips guys!
It means a great deal to talk with people who truly know what it's like. despite the doctor's good intentions or my family's, they don't get it fully. My mom often says, read a book, watch t.v. to take your mind off it. That I could do if I could only get my spasming larynx controlled! I miss my books.

Really, I can handle all the typical LPR symptoms, burning throat, mucus/ nasal drip, referred ear pain, ect
It's the blasted VCD, the inability to breath (which for me is 24/7 no matter what i'm thinking nor my activity level). My larynx has really taken a beating and doesn't want to open when I inhale. It then causes all the other nerves and muscles in my neck to completely tense up. It feels often like I'm being strangled or some one is stepping on me with their full weight.

The last time I had this it took a full month before I was prescribed klonopin. That was for anxiety prior to me knowing what I was indeed suffering was LPR and now I also know VCD. However, it really helped!! And I'm certain that is because it allowed my larynx to relax. It didn't work over night but, after I began it along with the Nexium, and lifestyle modifications it made a bug difference. I was able to go out and do things. Because like I said for me, I can somewhat manage the other symptoms, or at the very least not let them control me. Before the Kolonpin I also developed a sever case of constrocodritis. It was so bad I could not even lightly touch my sternum or ribs, for 2 months. My should blades radiated pain too. I was told this was because I modified my breathing by bracing my self because of my larynx not functioning right.

Unfortunately, this just reappeared 10 days ago. I didn't know it would get this bad and when i was at the ENT I brought up the idea of klonopin and he agreed it could help but wanted me to hold off until I went to the pulmonologist appointment on Tuesday this week. There I will be doing breathing therapy. He said if my larynx was relaxed we would not be able to accurately start the therapy and see how it's malfunctioning as I do things. Now that I think about it after 4 days have passed and I've only gotten worse, I'm so upset I wasn't put on it. I graduated yesterday but was in so much agony over the pressure/ tightness/ and breathlessness I could not attend (Interestingly my thesis oral defense is the day my LPR returned, stress-related? I suspect so). That broke my heart. I'm still hopeful though. I have moments. Like 1-5 minutes a day where my breathing is 50% better and I feel clarity, relief and like my old self. I know it will get better.

when you went on your trip where were you time wise in your recovery? Seems closer to 6 months? My LPR reemerged just 10 days ago. But I'm still considering what I should do. It's really depressing :/ I wish this had happened after the trip or much sooner then the trip, so I had time to heal. It would never be a great time but...

Again, thank you everyone for the support, it means a heck of a lot right now![/QUOTE]

It is amazing how close your conditions are to mine, including all of the pains - chest and ear. Lets please stay in touch, as it is helpful to see what the professionals tell you along the way too. Prior to my trip I had only been on single does PPI and some Xanax - which was not enough for my throat to heal. When I left, I was still having problems. I think one of the reasons I felt better during my trip is that I was much much more relaxed and not focused on the troat - i.e, enjoying a crepe rather than writing on LPR blogs.. ha. I still had issues, but just not as bad. Please go - worst case scenario is you have to take an 8 hour flight home to go to the doc - it takes weeks to get an appt anyway. Nonetheless, I enjoyed the trip. At the time, I lacked a diagnosis of the vocal cord/nerve issues. Hence, the reason I still suffer 6 months later.

Only recently have I started the 2x PPI - and because of PVVN and vocal cord function I too was given Klonopin. Just like you, I too could not deal with the extreme tired feeling during the day (I see the ENT again in one week - so I am back on Xanax).

The breathing issue is my #1 complaint.. but the others are there too. I saw Pulminologist - did the breathing test - what it will show (I bet) is that your lung is functioning OK or at least in the "normal range" - but it will show signs of upper respiratory issues (the bottom part of the curve will be flat... ask to see the picture, you'll see that it looks like a mountain above the line and flatter below the line). Do not let the doc put you on a steroid or nasal spray unless he can say definitively that your lung is not functioning well or that he can sense inflamation in the lung. They told me the inhaler improved my flow by only 10% - this is not a compelling case for lung issues. Sometimes I feel that docs think they need to give you something to make you feel like you got something out of the visit....many of the sprays can actually irritate your throat. My pulminologist twice said I think your lungs are OK - but you show signs of bad upper respiratory functioning which is standard for LPR. I tried an inhaler and it helped just a bit, but confirmed for me the problem was nerve/throat, etc. And, I got a sore throat from the spray.

Strange questions - when you take a big gulp of water do you ever feel like it is hard to breathe right afterwards, or even feel like you cant swallow the gulp? However, when you eat does your breathing feel better and you swallow with no problem? Do you ever get a feeling that your stomach flutters - almost tingles and then you get sensations in your arms or legs? Do you have constant burps - not the hard gross ones, but soft air pocket feelings just below the adams apple?

Thank you -
Hi there,

First: you sound like you are describing me nearly to a t. how comforting but also madding. I'm so sorry you are dealing with this junk too.

" when you take a big gulp of water do you ever feel like it is hard to breathe right afterwards, or even feel like you cant swallow the gulp? However, when you eat does your breathing feel better and you swallow with no problem? "

Yes, and Yes. I have no idea why this would be. I feel so much better during the act of eating in terms of my breathing. Obviously our larynx is able to relax during this time. However, after a while I feel worse because of the resulting reflux.

"Do you ever get a feeling that your stomach flutters - almost tingles and then you get sensations in your arms or legs? "

Yes! again I have no clue what this is about but I do get this from time to time and kinda note it in my head like, "oh! well, that felt odd".

"Do you have constant burps - not the hard gross ones, but soft air pocket feelings just below the adams apple?"

I had that all day everyday my last LPR flare. It went on like that for a good 3 months and gradually dissipated. This time it happens rarely however, I'm sure we both have experienced shifting symptoms as we try to heal. But I want to say that is totally normal with LPR.

Thank you for all your words of advice. Its cool to see and read someone with these crazy symptoms went out into the world and had a good time!!

I really need to go back on something like Klonopin or Xanax. Until I got LPR I would never have taken them but I'm sure you would agree at times its the only way to get through the day. I was only on Klonopin for a few months 4 years ago. It was a situational need. I never became dependent nor would have wanted to because it makes you fell funny- duh! Also, I made sure to go off it gradually. I'm pretty sure I was on a very low dose too.

I'm going to have my breathing tested tomorrow. I so hope that doc will prescribe me one of those drugs, or one similar. Last time is was a psychiatrist (who I had been seeing to emotionally get through the physical discomfort and pain) did. I'm not sure if an ENT/ Pulminologist would. Do you think if I explain the physical and emotional toll it is taking they would? Like literally all the muscles and nerves in my neck are so tense/ swollen/ tightened I can barley move my neck. It radiates down my back and I contort my body to adjust to the limited air supply my larynx is allowing me to breath when inhaling. Last night I felt the beginnings of costochondritis but this time I know what it is. I did take a nasin (it's the only thing that helps, I know it's not the best with reflux) and put an ice pack on me. And I think the tightened neck is the reason for the breathing problems. I do think the breathing problems are a result of the body trying to protect itself from the acid coming up too. Its all connected into this lovely package. So, I need those meds and will only want to take them until I get a bit better. Those meds were made for times like these.

Yeah, I'm pretty certain this is NOT asthma. My family member has it. This is only trouble breathing when I inhale which is how VCD is not asthma. So, I will not take any asthma meds.

It's good to know you are NOW finally on PPIs 2xs a day. I think it will make a huge difference.

Hope today is a good one in terms of your recovery. I'd love be in touch since we have similar concerns and struggles.

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