Posted , 7 users are following.
hello guys i have bronchiatesis and have this chronic cough since 2013, i have been to 7 different pulmonologist one of them gave me a punctured lung and the other one put me on a ventilator for six days from simple bronchoscopy. my question is do you stay up all night coughing even after doing my treatment and using the vest? Also i am losing weight due to cough does anyone have any suggestions? Thanks
0 likes, 19 replies
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Reglois patricia56996
Posted
Oh poor you, I have only had one nasty experience with a pulmonologist and no where near as bad as yours. Can't say my brochiectasis is severe but I have three other lung conditions which also cause a cough.
I have a wedge pillow, quite a high one under my 2 inch memory over mattress plus a pillow further down the bed to stop me from sliding down because of the wedge. I use a good cough syrup just as i get in bed and a good swig of water. Can't say I am cough free over night but only wake three or four time in the night now.
patricia56996 Reglois
Posted
Yes i forgot to mention my age. I am 51, lupus caused my serial pneumonia , also kidney failure on peritoneal dialysis which I perform every night So this is the most challenging of them all . I use a cough syrup hydromet and that doesn't help This med is prescription strength What is the name of the cough medication you use? I will get the wedge pillow see if that help Thanks for your input
Reglois patricia56996
Posted
I am in France so names of products may not be the same, I use Bronchokod, over the counter, works for me. The wedge pillow was the best thing I ever bought, got a really cheap one to start just to see if it worked, suppose you could use pillows under your mattress at first, say three, two at the top and one below to make the wedge shape, you also do need one under your bum to stop slide down. Takes a bit of getting used to but now I manage about six hours with maybe one or two coughing fits during the night. I also sleep with my window ajar (slated shutters closed) winter and summer, as I live in mini mountains the air is very clean.
Bonfires are my worst nightmare, in this Corona virus crisis every one is in lockdown so out in their gardens clearing, cutting down and setting fire. Horrendous if the wind is in the wrong direction like the other week my house got covered in smoke and it seeped in, causing an exacerbation that would normally have seen me in hospital but I had to self medicate, massive up take in steroids and then antibiotics and upped to oxygen for a week, still notice the effects. I have put a polite note in offenders letterboxes asking them to please consider me and wind direction before setting big bonfires.
Traffic fumes are one of the worst things for me, so lucky where I live, three cars in a row is a traffic jam !!!!!
Gill200 patricia56996
Posted
Hi, I'm 72 and have had bronchiectasis since a baby (got measles which turned to pneumonia). I'm afraid night coughing goes with the condition. You can be ok in the day but not the night. If I am reasonably well, I don't cof much in the night, but the last 2 nights I have coughed a lot and this is because I've overdone it in the garden. When this happens I just have to take it easy during the day for a couple of days. However, sometimes it doesn't settle and it usually means I need a course of antibiotics. I normally end up having antibiotics 3, perhaps 4 times a year. I'm on Carbocisteine capsules all the time prescribed by my consultant at the hospital - its supposed to loosen the rubbish to make it easier to bring up and I think it does help. The thing is not to overdo it but that's difficult - you've overdone it before you know. Best wishes.
patricia56996 Gill200
Posted
Thanks for tour input, I will definitely bring that med you mentioned to my pulmonologist.
patricia56996 Gill200
Posted
Hey the carbocisteine you mentioned is on ebay. Is the medications over the counter now or just ask the doc for it? The name of it on ebay is Carbocisteine solmux Is that the full name if yours?
Gill200 patricia56996
Posted
Hi, My prescription list just says carbocisteine. It recommends 4 a day, 6 if the stuff isn't loose. I've just looked on ebay and it didn't come up. However, I would be reluctant to buy medicines from there. Amazon perhaps though its not there either. I'm wandering how long the likes of us is going to have to stay in, and next winter doesn't bear thinking about. Usually in the nice weather people with our conditions can go out and about without worrying about flu for instance.
patricia56996 Gill200
Posted
Ok then i will wait until i can talk to my pulmonologist see what he says hopefully he's heard of it and will . He probably sold out cuz there was limited quantities last night and yes Amazon didn't have it on the website I might need to come and consult with ur doc he or she seems to have the handle on your case
I am guessing as long as it takes a vaccine to come out or a proven treatment modality. We never have to worry so much with the flu but this virus is too virulent to play with. I know is really challenging but the alternative is even unthinkable. So hang in there!
aitarg35939 patricia56996
Posted
Ouch! You have had a rough time. Makes me thankful all over again that my pulmo doesn't do automatic bronchoscopies.
Absent the punctured lung, I would say that you need better steroids as they are what has the biggest impact on night coughing in me. A SmartVest only loosens phlegm, which makes it easier to get up. Unless all your night time coughing is productive, that vest can't stop a dry cough; medications might, as well as raising the upper part of your body during sleep as Reglois does.
You didn't mention your age and what meds you take.
patricia56996 aitarg35939
Posted
Thanks for tour reply. What type of steroids do they have you on?
elizabeth49611 patricia56996
Edited
I've had Bx for over 25 yrs (I'm a 70 yr old female). It took years before I could get it under control. My specialist had to try a lot of different meds before we got the right combo.
Having joined this forum and another, I have learned that there are ways to take control and to try.
Look at your environment: mold, allergies, food allergies, air pollution, stress.
Since I retired (stress) and moved to an area with better air quality, I have felt so much better.
Try alternatives to prescribed meds. (I take turmeric w/pepper every day for it's anti-inflammatory properties).
A few months ago, I bought new bed pillows. Soon after, I noticed that I was coughing a lot more. I took a look at the pillows, they were filled with goose down. So I went and bought hypoalligenic pillows and that made a big different.
So little things can be causing you to difficulty, Beth
Reglois elizabeth49611
Edited
Oooooh yes Beth NO feathers, funnily enough that was my very first (unrecognised) symptom, I had chickens and ducks and thought I had become allergic to them, they had to go. It was 7 years later, 5 years of doctors insisting I had asthma, that I got a full diagnosis after a severe exacerbation I do believe I have had bronchiectasis since my early teens, loads of pleurisy and pneumonia from then on. I am now 73.
patricia56996 elizabeth49611
Posted
Thanks Beth I will get back on Tumeric, I didnt think it was helping so i had stopped taking it i was under the impression that if it is not the main root nothing else works
I have done several allergy panels and the results came back negative.
aitarg35939 patricia56996
Posted
You don't have to be technically, or medically, allergic to things to react to them. I am not allergic to anything natural, but i sure react. We have tons of mold here and it's especially bad this year because we're not in a drought right now. Then there's oak, ragweed, cedar, grasses. The term "hayfever" covers the non-allergic reactions. One of the most common is to dust mites. With feathers, there's a possible triple whammy: the allergy to feathers, mold growing in the feathers, and boy oh boy but do they catch & hold dust (& therefore dust mites). Beds, pillows, sheets, blankets, carpets, and curtains/drapes all hold tons of dust mites. Many of us also react badly to perfumes, chems, and cleaning products.
Reglois aitarg35939
Posted
You are so right aitarg I do not have any carpets in my house (all tiled) just one small rug for my feet in the lounge in winter, no curtains either except in the lounge, all the windows have shutters, no neighbours so not a problem. I do have wood burning fires but with regular wet wiping and an air scrubber I seem ok, no difference winter or summer, in fact I am worse in spring/summer. Use diluted white vinegar for cleaning, hate the smell but don't re-act. Use the brand Simple for personal hygiene and deodorant.
elizabeth49611 patricia56996
Posted
I was told to take it with pepper, it's to increase it's effectiveness. So I take it with 2-3 peppercorns.
patricia56996 Reglois
Posted
Ok thanks foe tour input. I have to comb through my house to see what the culprit might be
patricia56996 elizabeth49611
Posted
i appreciate your response. sorry if i am asking to many questions do you crush the peppercorns?
elizabeth49611 patricia56996
Posted
No. Only because I have found that taking ground pepper with the capsule is unpleasant. I have found Turmeric capsules with pepper already in them, but most don't have the pepper added.