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Thread: My cough, its so bad!

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    Default My cough, its so bad!

    Hello friends, ive missed you! Been quite awhile since i came on here. I have a stenosis. I have been to ENT and been scoped during this round of cough. He says it looks good in there. Why am i coughing? Every night. All. Night. Long. For 2 months. I dont sleep. Im ready to give up. Rheumy started me on 20mg pred 10 days ago, did not help. Now went up to 40 mg. But i dont know what the root is. Is it post nasal drip causing the cough? sometimes i bring up hard mucus, sometimes i do not. When will it end??? Rheumy says she doesnt thing its wegs related. I dont believe that, but they never find a cause. Thanks guys. This is my 20th year of having wegeners....you would think i could have it figured out by now. I am beyond weary. I know it will get better, because it always has...just dont know when.

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    Default Re: My cough, its so bad!

    I might know. This may not be what I had but it sure sounds like it. Horrible cough and sometimes hoarseness in my voice. For weeks. So bad I injured myself coughing. In my case I know for sure what caused it and it was because I went through weeks of procedures , tests and doctor visits. My cough was caused by LPR. Laryngopharyngeal reflux
    LPR is a form of acid reflux. For me, it meant that while I slept gases from in my digestive system were coming back up through my throat. Because I'm also breathing it meant that I was breathing in these toxic gases in my sleep and irritating my lungs- something FIERCE. It was horrible.
    I also , at times had regular reflux which is acid from the stomach coming up the eosphagus and causing it to burn.
    But , I also had long periods of time of LPR only. There is test equipment that works pretty well but it's a bit of a pain to do.
    It involves getting a wire down the throat into the eosphagus and wearing it for 24 hours (if I remember right) After they install it , you wear a little computer thing that is hooked up to the wire. The wire and computer monitor what fluids and gases are coming up and at also at what times.
    Mine definitely showed acidic stuff coming up at night during deep sleep. Because of this I also had a terrible time with sleep. My body knew when it was happening and fought to keep me OUT of deep sleep. There fore , I was exhausted a lot.
    The good news is that I was able to cure it with diet and some other measures.
    The short time ideas are to prop up the head of the bed so you sleep at an angle with your head UP. Do NOT eat 6 hours before bed time so that your stomach is empty. Avoid acid causing foods and especially for ME avoid caffeine. Caffeine relaxes the sphincter and lets the stuff come up.
    Good news there for me too, I was eventually able to drink coffee again- but it took months of difficult struggle with diet and ant acid medications.
    I take no medications for it anymore. I actually feel that it was something of a miracle that I am cured to this degree.
    There is also a diet with a book that tells about it - The Fast Tract Diet by Norm Robillard. He also has a facebook group that is super helpful for people dealing with LPR and using his diet to cope with it. I'm not sure what cured me but its very possible it was his diet. It took several months to really get better too. I think the eosphagus can become super sensitive and it takes time to get back to normal.

    I was so sick and desperate that I paid for consultation with him and he is very knowlegeable about LPR - if it turns out this is what is bothering you.

    I'll stop here since we don't know if this is what you have. There is a lot to learn about it if it is. An ENT should be a good place to start.
    Here is a page with some starter info
    https://www.healthline.com/health/silent-reflux#risk-factors

    Hopefully this was helpful- and not just confusing. It's a big subject. I hope you get it figured out soon . I sympathize with how bad a cough can be.

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    Default Re: My cough, its so bad!

    Thanks so much for the info, im gonna read up on it. They have dxed me with acid reflux, and i take prilosec for that. So maybe the steroids are making it worse. Hmm.

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    Default Re: My cough, its so bad!

    I found that many doctors are not very well educated about LPR. I had to learn about it on my own- I was not taught anything by my doctor. My gastroenterologist never mentioned that diet might help with my problem. I actually got mad at him. I had done so many tests and procedures with him and he never mentioned that diet could help me. I asked him how this could happen. He said "We are not trained in that"

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    Default Re: My cough, its so bad!

    I had GERD for years before my GPA and the meds to treat my GPA accentuated the GERD problem. The GPA also damage my sinuses which increase the problem of postnasal drip. I went through the usual regime of meds to treat GERD and ended up with a double dosage of generic Protonix which was the strongest method for treatment. Prilosec and Nexxum did very little for me. I had to get an exemption from my insurance plan in order to take a double dosage. Recently it was doubled again so I now take 40 mg twice a day.

    The GERD has damage my esophagus so I now have Barrett's esophagus which is a precancerous condition. Between the GERD and the post nasal drip I often have soreness in my throat which sometimes results in hoarseness and frequent episodes of coughing. My internist also added a double dosage of Famotidine which seems to help prevent the uptake of any stomach fluid. I also frequently take a generic form of Gas-X and Tums when I have an upset stomach and am burping a lot. To reduce the irritation of the post nasal drip I do a daily nasal rinse and more often if needed. Plus I take a high dosage of generic Muccinex to thin the mucous drainage to reduce the irritation in my throat.

    My bed is elevated at the head. I often wake up in the middle of the night with a dry throat. I asked my internist about possible damage from the fumes from the belching and burping caused by the GERD and he said he doubted it would cause any further damage. I also have lung damage from the GPA and several episodes of pneumonia.

    This information about LPR was very interesting to me but also a bit alarming since it might be just another medical concern I need to add to my long list of problems that require monitoring and attention. Thanks for the helpful information.
    Last edited by drz; 01-28-2021 at 10:10 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: My cough, its so bad!

    I was initially diagnosed with GERD too and took buckets of protonix and every other GERD potion known to man. In the beggining it helped but over time became less effective and my symptoms moved into LPR and not so much GERD.
    I too developed pneumonia - no doubt from the fluids and fumes going into my lungs. The book I mentioned , the Fast Tract Diet , is not hard to follow and has helped a lot of people live with LPR or recover from it. I tried other alternative therapies that didn't help me much. The diet may not seem like it's helping a lot right at first because it takes some time for the body to heal and lose the incredible sensitivity. It is not a quick answer for most people. The basic idea of the diet is that it limits foods which tend to form gases in the digestive tract which cause back pressure that gets released through the eosphagus during the relaxation of sleep.
    I now eat anything I want and no longer have to follow the diet. My diet is limited somewhat for completely different reasons. I eat only once a day from 12 PM until 6 PM with no exceptions. This type of eating has numerous heath benefits.

    It's a horrible illness to deal with. My own recovery to where I am now with it still amazes me. I had all the symptoms and all the drugs. I was literally days away from getting surgery in Seattle. There are several surgeries to treat GERD and LPR but like my doctor told me "The fact that there are several different surgeries for the same illness tells me that no one of them really works all that great"

    I know some people are helped a lot by surgery but quite a few are not helped and some end up having to get the surgery reversed.

    My opinion, and I DO mean opinion, is that sticking to the Fast Tract Diet religiously (out of sheer desperation) led to my body healing to the point that I don't need any of the drugs any more. I don't know if other people could get that lucky or not.

    I have one more tip. During the horrific period of time when I would wake up in the night coughing with my eosphagus on FIRE I hit upon something that helped me dramatically to get relief and actually treat the acid fumes. Because of GPA I have Neil Med sinus rinse which is salt and baking soda. I rinsed and gargled with this potion and it helped a lot as the baking soda helps with the acid and the whole thing helps also by washing out the offending material. But, my eosphagus was not being helped and I was stuck with horrible coughing fits.

    So , I thought "How can I treat my eosphagus with this?" - Well, by gargling and then actually inhaling some of the salt/soda water and coughing it out. The relief was fantastic. It was not a perfect answer but it helped a lot in a very desperate situation.

    Take care

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    Default Re: My cough, its so bad!

    Just drinking a small amount of water with a little baking soda mixed in helps me with that coughing and burning in the esophagus. It mainly happens when I've been eating too much of the wrong things together, i.e., extreme indigestion. But at one point I did have some ulceration where my stomach met my duodenum, first part of small intestine, due to all the acid being created and being sent up the esophagus to burn the back of my throat. I had an endoscopy and got to see pics of these ulcers. So I was on the standard protonix for a couple weeks and it resolved it. For occasional issues, the baking soda and water works fine. Maybe I should look at the Fast Track Diet.
    Anne, dx'ed April 2011

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    Default Re: My cough, its so bad!

    Hey Anne,

    I just took a look and I still have the Fast Tract book. I don't need it - can I drop it off at your house some time when I'm headed to town?

    There is a facebook group that the author of the book moderates that is super helpful but for anyone interested I do recommend looking at the book first. It's just easier because the information is so nicely organized and you can look through the book at the parts you want to. It's nice having the info all in one place. Then , if you have questions the facebook group is good. People there are really helpful.

    It is a super miserable problem to have and a lot of people are able to get major relief from it without having to get surgery. I'm so glad I was able to avoid the surgery. Even the best case scenarios are quite life changing. The surgery is not as great an option as I first thought. A person is left with limitations after the surgery and life is never quite the same. Well worth it if it fixes the problem but still not like getting a hernia fixed or something where life just goes back to the way it was before.

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    Default Re: My cough, its so bad!

    Hi, Kirk,

    Thanks for the reply. I'm not sure what LPR is but can find out. In any case, the book and diet you mentioned sound very helpful if they actually got you off the nasty drugs. I hope you are feeling OK in general and got through the snow OK.... geez, it did that to us 2 years ago! Sure you can drop by whenever and if I'm not here can leave the book on my messy porch. Nice to see it getting light earlier and dark later, and PDT starts soon!

    Anne
    Anne, dx'ed April 2011

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    Default Re: My cough, its so bad!

    Hi Anne,

    Hey, I forgot all about PDT- thanks for the reminder. I'm not much in touch with normal life these days so the reminders are good.

    Yeah, the diet and the LPR information is good to know about even if you end up not needing it. One thing it did for me was help explain some things that for me the doctors had not really addressed or explained. One thing I've noticed with this reflux is that each person is VERY different and to a great extent has to figure out their own situation and what things are helping them are what maybe is not. For me a fair amount of trial and error. Having the info at least let me know things to try.

    I'll drop the book off some day soon. I don't have a plan on what day I'm passing through but it would in the middle of the day likely. I've another small item for you but I'll just let that be a BIG surprise. A little treat from the Co-op that I discovered in recent times.

    Talk to ya soon.

    I'll try and give you heads up before I come by but these days I try and avoid telling people what I will do or not do. It helps to not get people mad when I don't do what I said I would do.

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