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Do others with IPF cough for 20 minutes every morning?
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I have a cough, although it doesn’t go on quite as long as with the OP. Mine is most prevalent at bedtime and in the morning, but will also occur during the day. I often cough so hard and long to expel mucus that it causes cramps in my intercostal muscles in the back and in my transversus thoracic muscle. The cramps are quite painful. I discovered a device on the internet called the Air Physio that is an Australian product. http://AirPhysioglobal.com for the US market, the device is shipped from IL. I have waited a few weeks of use before posting about the device, but I believe it works. There are many positive reviews, mostly from COPD and Asthma sufferers. It uses an Oscillating Positive Expiratory Pressure to assist in dislodging mucus, thus making it somewhat easier to expectorate. It does cause coughing sometimes during and after use. It does seem to make the mucus thinner and less tenacious causing less work (hard coughing) to get rid of it. It certainly seems to help reduce the coughing when I go from vertical to horizontal at bedtime. When you use it, you can feel the vibrating pressures in your chest as the steel ball is raised and lowered by your exhalation. It is also supposed to assist in lung capacity, but I can’t attest to that until my next PFT. It does give me some relief so I wanted to recommend it. Your mileage may vary, but I thought it was well worth the $60 expenditure.
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Hi Rod
Try a wedge pillow for sleeping, certainly helps alleviate the cough, though now I have had to get my son in law to make a wedge type frame to go under my mattress as I need to have my head even higher to be able to breathe and sleep. Also you could, if you sleep alone, put bricks under the feet of the bed head to raise it up.
I really sympathize with the muscle cramps, they are awful, mine seem to come in waves even when not coughing.
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Wow, that is really interesting Rod, thank you for sharing! Addressing or getting relief from the chronic, painful and frustrating cough of IPF is a popular topic of discussion on our forums so I’m sure this will spark many people’s interests. Thanks for writing!
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Hi Susan. I have already been using a wedge pillow and the head of my bed has been raised. I decided to try an experiment last night and sleep flat. It was with less coughing as I had been experiencing with the wedge. It was successful and I’ll give it another try tonight. It’s the same way for me with the cramps. I also get them when not coughing.
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James –
I was diagnosed with IPF 1 1/2 years ago. I had a cough for about 5 years before diagnosis. Doctor said it was GERD. I cough some every day. It is worse if I talk. Mine is usually a dry cough. I tend to cough more when reclining – whether to sleep, dentist office, massage, etc. Sometimes I drink a cup of plain hot water and that seems to help relax my throat muscles. I have some allergies which are animal and plant related. I find if I am cleaning house or close to the floor for any reason I cough more. Use over the counter cough drops. Sometimes they help but usually they don’t.
I am on OFEV and tolerate it pretty well.
Hope this helps.
Marianne
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I too was originally diagnosed with GERD because of cough. When the endoscopy showed only mild signs of irritation they did a chest Xray and and voila, you need to see a pulmonologist and do some further testing. That was the beginning of the answer which turned out to be IPF (no real answer after all). I was never a smoker and never worked in harsh conditions etc. My cough is very productive in the mornings or when I get low on O2 due to exertion without enough O2. However even when it is productive it takes a lot of effort as in I cough extensively and and many of the coughs do nothing. I am going to try the Airphysio product mentioned earlier and available on Amazon and see how it goes.
I get up so much mucous each morning it’s ridiculous but if something helps do this more effectively I am all for it. I was prescribed Symbicort by one doctor but my pulmonary therapist suggested that with IPF being a restrictive disorder and Symbicort is designed for obstructive disorder, she thought I should ask another doctor’s opinion and we decided it was not worth0 the side effects and would not be likely to be beneficial.
I also get coughing spells after talking or laughing. It is very uncomfortable because you just start coughing and can’t stop even though it is not really productive in most of these cases, plus you are around other people or on the phone. I will certainly try cough drops as a solution as well.
Thanks for all the comments and suggestions,
Jim
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Thank you Ron, really useful information. I wake up and then cough for at least 20 minutes. The other contributors also provide some excellent advice. Thank you
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James/Jim, you are so right about Symbicourt, it nearly killed me on the second dose (night, first day time dose was bad enough), I cramped up all over and couldn’t move, couldn’t breathe properly, if I could have got to the telephone, by my bed, I would have rung for help it was that bad. I was given it when at the very beginning they thought I had IPF, no I have CPFE ++, really not recommended for my conditions that are very restrictive, I also have GERD but Omiprazole works well for me, or if really bad I can resort to Gabapentine . Your description of your cough is exactly like mine in all aspects. I like talking !!!!!!!!
Take care every one Sue
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It was with a collective sigh of commiseration when reading your stories about ‘the cough’. I was diagnosed with PF in 2015. It was only this year after an exacerbation requiring hospital that I developed the cough. I had read that PF cough was dry but as you all described it is wet and productive. Mine is worse in the morning. I usually do a hand cupping / tapping chest massage while in the shower that helps bring up the mucous. When I asked my Lung Physician about it he just said difficult to treat and use cough lozenges. I have found the honey and lemon drops to be soothing. I was interested in the comment that the use of the air flow gadget was helpful.
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I used to have a phlegmy cough every morning but it has virtually disappeared since I started inhaling Acetylcysteine solution by nebulizer twice a day for 10 minutes. That was on the advice of Dr David Schwartz in Denver who is a top IPF researcher. Acetylcysteine may be called Mucomyst in the US.
Stay well.
Rob -
Before my diagnosis this summer, I initially came in with a cough that got to the point where my entire body ached and I threw up. My regular dr was out, but a D.O. came in and heard me – she said to try over-the-counter allergy medication. I thought it was worth a try – so I bought Allergen and Flonase nasal spray. My life became worth living again – I really have no idea how progressed my IPF is today, but I can finally control my coughing. Maybe this is just the honeymoon phase, but it has made me feel nearly normal. I can still cough, get up phlem, but it’s not killing me and my diaphragm and it subsides nicely. I only use my back-pack oxygen when outdoors doing strenuous things. I have a watch that tells me my oxygen levels. I enrolled in a pulmonary rehab program for three months and it has made me so strong and much better able to do the things I could always do. I lift weights, use treadmill, bike and learn to improve my core muscles. I am 73 and hated exercise all my life – not overweight, but just hated to do the work! Now, so glad I stuck with this program and a therapist who makes me work a little! I had my dr send all my medical reports to the U of Minnesota for possible clinical trial participation. Even if it doesn’t help me, I can maybe contribute to someone else down the road with this disease.
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James, I cough every morning for 30 minutes and when laying down at night for 20 minutes. My doctor said it is normal, just take Musinex. I take liquid at night and 1 each 1200 milligrams morning and night. I will cough sporadically during the day. I have contributed it to the two positions of getting up and going to bed, irritating the lung positions. I am on oxygen 24/7 and 20 steps before being out of breath is normal for me. No lifting or bending over. Oxygen is set on 7. I simply contribute this to PF progression. I take Mofetil as neither of the two normally prescribed pills worked for me, without serious side effects.
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I had a mucous problem a few years ago and started researching various supplements and the several I take do help in their own ways but everybody is different. I think some of the stuff I take has helped stop the cough most of the time. I might cough for a minute in the early AM and a few times throughout the day for about 10 seconds. I talk on the phone a lot with a new job I have and thought it would cause me to cough more but it really hasn’t in the past month. I will say acid reflux can add to the cough as well as certain foods or liquids.
Stay well,
Steve
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Steve so please share what you take that helps with cough??
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Morning James
I have a Chinese acupuncturist who put me on cough medicine called Nin Jiom Pei Pa Koa. It works well for me cause I have Restless Legs so I can’t take “off the counter cough meds”.I tried to take a picture of it, but can’t figure out how to include it!!
thanks for sharing James!
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Hi all,
I cough for England every morning, 10- 15 minutes. Sometimes in the evening too.
Constantly clearing my throat, annoying to me and annoying to those I talk to.
I have just found out that I have a Hiatial Hernia, that is probably the source of my acid reflux and the IPF. I have just started to take a PPI, and I have to say, that my coughing in the mornings seem to be a bit better, i.e. less.
As you say Steve, the acid reflux may have something to do with it.
Jeff, Southern England.
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@cleavergreene
Hey Jeff,
There are several things I do to avoid coughing and mucous, like EGCG covered in other threads here, Serrapeptase – been taking it almost 3 years and it still mitigates mucous well but that one you must never take close to any pills or food, I wait at least 3 hours either side. Ask me why sometime. Also, take NAC, baby aspirin increasing the dosage, and a few more supplements plus watch what I eat and lots of water.
Stay well,
Steve
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It is interesting to me that I have COPD, Emphysema and IPF but I rarely ever cough.
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IPF since 2018, took 1 year to officially confirm diagnosis and put me on OFEV, not yet on O2, as to coughing, yes, 20+ minutes every morning, I have found (for me) benzanotate (Tessalon perles) do help about 30-60 minutes after I take them, also cough drops, to keep back of throat moist helps keep the post nasal easier to clear from accumulating.
The coughing has gotten worse this year which is almost 4 years into the disease.
Fatigue is a daily battle, mentally it feels like I can sense my body fighting this disease throughout the day, and having been an athlete my whole life, it’s like the feeling after a hard race, your body feels the aches and pains of the struggle to the end of the race and in my case to the end of the day fighting this disease.
I have noticed more recently that anytime I take a shower the mist induces coughing, as well as in kitchen when someone cooking sizzling steaks or anything with the mist coming off the skillet induces coughing, so to interpret I am assuming breathing in these “misty” air particles is a trigger.
I usually have 2-4 coughing spells through the day with the first being first thing in AM after rising from bed and beginning to movie around, most of these coughing spells are somewhat productive (phlegm) initially and once some phlegm comes and is cleared, the coughing calms.
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Thank you all for commenting with suggestions and confirming that it is normal with IPF. I was diagnosed in 2018 and it has now progressed to the point of full evaluation at Duke in early December to prepare for lung transplant sometime next year.
I find coughing spells every morning are part of my daily life, but not at night. I am sleeping with oxygen and rarely get a spell at night. I also induce fits of cough after dropping below 85 on O2, just doing mild things around the house, and then when I recover to around 88-89 I begin a coughing spell. I also cough if I talk or laugh too much. I tried Tessalon Perles and EGCG, but saw no difference so I quit using them. I take enough stuff, Ofev included, and figured less is better if I see no change.
I am at 91-92 at rest with no oxygen, but the doctor at Duke said keep staying active because most people with as much damage in their lungs as mine are on O2 at all times. I am playing golf 3 x a week and bring O2 with me to gas up when I have to climb hills or if I am dropping in O2. I have a concentrator with tank fill option and can refill my tanks which I put in a backpack and can use 4-5 ml (or more) full O2. I can walk the dogs with a backpack and O2 and still keep my oxygen above 88. The little portable units that generate 2 ml pulse don’t give enough oxygen to move actively and stay above 88 for me. I highly recommend the tank option if you are in a similar predicament. It has been very helpful because I can bring a tank to the gym and get on an elliptical/treadmill and use 6 ml for a half an hour and keep my O2 at 88-90 while exercising.
The transplant process is scary, but I trust the team at Duke and look forward to getting closer to normal in activity. I get out of breath doing very little activity, swinging a golf club, fixing divots, climbing 1 flight of stairs (very slowly now), etc. I used to play tennis, run, hike, yardwork etc and that stuff is out for now. I could do without returning to yardwork but my wife probably has another opinion.
Thanks again for your suggestions.
Jim
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