Msacswander - no coughing lying down?
I'm usually a lurker but finally have to ask about you not coughing while lying down. You are the first person I've come across, besides myself, that this is true for. I can cough non-stop, but as soon as I lie down, no matter the time of day or night, I quit coughing. That is my only symptom at this point.
I have been coughing non-stop since Memorial Day weekend. It appeared after two days of feeling lethargic, like I was getting a cold, but no cold ever materialized. My allergist treated me for asthma for 3 weeks with no improvement, before he referred me to an ENT. The ENT listened to my symptoms (occasional pressure in throat and gobs of mucous in my throat in the weeks prior to the cough starting), put a scope down my throat, saw my fire engine red larnyx and diagnosed LPR. He said further, more definitive tests could wait while we hopefully get things under control with PPIs. I was on Prevacid for one week, then he switched me to Nexium on the advice of some of his colleagues. So now I've been on Nexium for 4.5 weeks. For the record, I have no GERD symptoms - no heartburn, no metallic taste in my mouth, no burning in my throat. And chest x-rays, sinus x-rays, and lung function testing all came back just fine - excellent even.
I have been scoped 2 additional times, each time the doctor has seen little to no improvement. I'm going in again tomorrow to see if I've made any progress in the last 2 weeks. I don't think so.
(I think I had this once before, 9 years ago, after getting the flu, but I was told it was cough-variant asthma. I used inhalers for 9 months, when the cough finally went away. Now I'm thinking I had LPR that has now resurfaced.)
I have been told it will take 6 weeks to 3 months before I see any improvement. That's how long it takes the Nexium to work. In the meantime, my life is on hold! I cannot exercise, see people socially, do much speaking in meetings at work, or anything else because I can't stop coughing. I have wasted my whole summer, staying inside, unable to do any outdoor activities (and I'm in Michigan, where summertime is extremely short and precious!!!). I often have to leave work, so I can lie in bed, somewhat propped up, with my laptop on my knees.
I thank God I can sleep at night, and that I don't have the pain and other discomfort some of the people on this board have. But coughing non-stop is its own special h-e-l-l, which no one understands unless they've been there. I'm exhausted all the time, muscles ache, bones hurt, I feel like I'm becoming incontinent.
So my question is, how on earth do you do it? How do you live with the coughing? How do you stay positive?
I allow myself an occasional pity party, and I guess this was it for the week.
Thanks for any input or advice or suggestions you might have.
It's difficult, no doubt. I empathize with with - the coughing will literally drive someone insane before the treatment begins working. I had the uncontrollabe cough for 8 months before I was properly treated, and there were many times I wondered if I could go on. The official diagnosis of LPR came right as I was running out of hope.
So instead of having you suffer needlessly, I hope you are on the correct dosage of Nexium. I'm glad your Doctor changed you to Nexium, but the magic formula is not 1 pill a day, but it's 2 pills a day - for a total of 80mg.
I had been on 1 pill a day for 2 months with no results, but 95% of my coughing went away 20 minutes after I took my first double dose.
I had 3 great years on the double dose and then something happened last summer where the LPR became PPI-resistant. The cough came back, but at about 25% intensity, which is livable. I can no longer exercise at this makes the coughing even worse. I really don't know why it came back, but one night I just doubled over and started hacking away. Lest anyone think I was stressed out, I was actually completely stress-free and everything in my life was lined up just right - I hadn't worked all summer, had a new part-time job lined up to start in 2 weeks, was going to start my last class in preparation fo Physician Assistant school in 2 weeks, and was looking forward to applying. I had been exercising 2-3 hours a day (cardio and weights) all summer, and my body looked better than it had in years. I felt young, hot, and like the LPR was totally under control - than BAM! When it came back, I tried to get through class and work, but had to quit my job at the hospital because being on my feet for long hours each day made the LPR even worse. I didn't apply to PA school because 1) I couldn't do the rotation (on feet for 20 hours a day) and 2)who wants to go to a doctor/PA that coughs constantly?
Instead, I decided to go back to my old career in marketing which allows me to sit down all day and doesn't aggravate the LPR nearly as badly as being on my feet. But I still cough/throat clear at least once a minute and I constantly worry about what my colleagues think of it who sit nearby me. Frankly, I don't feel comfortable telling them I have LPR because no one's every heard of it.
And every time I lie down, the coughing stops. EVERY TIME. So I know this thing is a combination of acid/gas rising from the stomach combined with post-nasal drip. And maybe the larynx itself is hypersensitive after years of being attacked by acid. I also know acid is the root cause of this because 1)the PPIs did work for many years and 2) my dentist told me most of my enamel is gone from my teeth (and she told me this when I was 29). She said I had the teeth of a bulimic, and that is something I certainly have never been! Like food way too much to waste it.
My mother has a chronic cough but no red laryx. She's had the cough since about the same time I got it (hers started at 33). She thinks she has "hypersensitive lungs" but has never been diagnosed with anything and has steadfastly refused to try PPIs. She also thinks her own coughing is stress-related. She feels like her throat closes up when she is "under attack" by someone else. I've never felt this way. Unlike her, I've never had a stress problem and I don't know the meaning of mental anxiety or depression. I can't imagine not wanting to live your life to the maximum - which is why it's so ironic (in a very sick way), that I was struck with a condition that makes ordinary living so incredibly difficult.
Anyway, I hope the double dose works for you. If you have the Nexium there, just start taking 2 at a time. Paying for 2 is the tricky thing - if your insurance even covers Nexium at all, you're lucky. If they balk at 2 per day, then go through your insurance's official appeals process. I can point you to literature available on line that emphatically states that people with LPR need 2 doses a day of a PPI. In the meantime, you can ask your doctor for free samples. In the past when running low, I've made multiple appts with gastros, and would go from one to the next collecting free samples to get me through the gap.
Thank you, Macswander, for your empathy! I am so sorry you had to give up your PA studies. I can completely understand why you did, though, as it's tough to do anything that strenuous when you're coughing non-stop and so exhausted from the coughing, to boot.
I have told everyone at work who asks about my coughing about LPR. I figure this is my chance to educate the public! I tell them there is a fairly recently identified, little known "cousin" to acid reflux - everyone knows about acid reflux, so it's not so hard for them to make the leap to LPR. I'd rather do that than have them think I have some terribly infectious condition that they might be able to catch from me.
Like you, I do not feel stressed out, so I cannot put this condition down to stress. I beileve I still have my teeth enamel at age 41, since my dentist has never said otherwise, so maybe my case is fairly light. I have a dental appointment later this month so I will be sure to ask about that. As I said before, I think I had this once maybe 8 years ago, and it lasted for almost a full year. Now, it's back out of the blue and with a vengeance. My ENT thinks I probably had some low level of activity all this time, that it was just never bad enough to cause the cough.
Fortunately, my ENT believes 2 Nexium per day is necessary, however, he has me taking them once in the morning (one hour before breakfast) and once in the evening (one hour before dinner). I'll try two in the morning and see what happens. I have noticed not a dent in my coughing since I began the Nexium 5 1/2 weeks ago.
I also found a study this weekend that shows the optimal dosing is 15-30 minutes prior to eating, so I will try that, as well. I am also now on Carafate, which is supposed to act like a sponge in my stomach - I guess it's all chalk - and 10mg amatriptyline each evening before I go to bed. I had read a different study that said the low dose amatriptyline helps with the cough more so than codeine, but it's not helping. My doctor keeps offering me cough syrup with codeine, trying to get me some relief, but since I can't take it during the day because it would make me drowsy and interfere with driving and I don't cough at night, I can't see where I need it.
My scoping last week showed absolutely no improvement in my larnyx, so my doctor is scheduling an Upper GI series, hopefully to happen in the next couple of weeks, to rule out things like hiatal hernias.
The interesting thing is, a week ago, I had a cup of coffee in the morning, before I put any other food into my stomach that day. (We were in a restaurant for breakfast and it smelled so good, I couldn't resist!!) That day was fairly decent - not nearly the amount of coughing I had been used to. Today, I've been trying to eat right, but have been doing tons of coughing, so I drank some lemon squeezed into water. It actually helped almost immediately. It was a very temporary fix, however, as the coughing came back full strength (but not worse!) about an hour later. Do you think there is anything to the theory that this is caused by not enough acid? I just don't know what to think anymore.....
Thanks again for the empathy and all the information. I appreciate it!
Don't mean to butt in on your coughing discussion, but since the thread title included "LYING DOWN", I had to check and reply.
I've never had coughing problems, but definitely was getting LPR due to excessive "burping" - reflux, probably when my weak sphincter opens uninvited. I do these silent burps ALOT more than before GERD/LPR very suddenly "hit". I also know now that frequent numerous burps = irritated stomach and/or throat.
Anyway, 1 thing I noticed early on was that when I lay down, my burping would stop.
I should also mention my hiccupping, which started concurrently with the burps. It's mostly slow but deep hiccups, which again noone else knows I do. These aren't as frequent as burps, but are there many times.
Any hiccuping I have also stops on horizontal.
I don't think it's quite as solid-stop now, but it still seems to basically stop when I'm lying down. It's been 1.5 years I've suffered with reflux. I still seem best off being horizontal. Contrary to the conventional wisdom of GERD. Although frequently LPR sufferers are noted as not suffering "at night".
I thought it's interesting you mention no coughing when lying down.
I'm really starting to suspect this is more neurological than anything.
Feel free to butt in, OLR! The more pieces of the puzzle we can collect, the better off we'll all be.
Interesting thoughts.......can you tell us more about why you think it's possibly neurological?
I do agree with the nuerologiacal point but to but in i was cheched by a nueroligist and they said it is not. So maybe one less docter you will all have to go to. Sorry to get involoved
O'l Line Rebel,
I too am very curious as to why you think it is neurological?..
Well, it may be neurological in the sense that it's nerve-related (I'm saying nerve related - not anxiety related).
I truly believe I got LPR from constant chemical exposure to furnace exhaust over several months - I think it may have damaged the nervous system.
The only thing that gives credence to a stress relation to me, is that I belch horribly very frequently since last August - and I tend to belch more when I think about something unpleasant.
When I'm busy working in my sit-down job, I belch far less - but when I was busy working my medical on-the-feet job, I belched like crazy, even though I enjoyed my medical job much more than my sit-down job.
As for when I took my Nexium - I took the
80 mg together, in the morning, before breakfast. Worked great for 3 years.