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    • #25297
      Reshma Joshi
      Participant

      Hello!

      Today we brought our mom home from hospital.She had a big flare up and high heartbeats few days ago so we had to take her to the hospital.

      She has excessive cough while sleeping time. It takes her much longer time to sleep because of the cough. And also she makes some kind of noise while sleeping which she’s not aware of. I’m seeking help or advices here to make her feel better during bed time? Are there any tips or suggestions that we can try to make her feel better and have a good sleep?

      Any information can be very valuable to us 🙏

      Warm regards,

      Reshma

    • #25302

      Hi Reshma,

      I’m so glad you were able to bring your Mom home from the hospital. That must be a relief! How is she doing now?

      Have you tried adjusting her bed a little bit, either through propping her up on pillows or seeing if she sleeps better on a recliner? This isn’t, of course, medical advice as I am not qualified to do that, but it’s something that helps me at night. When I lay flat (or even almost flat) I really struggle with the pesky cough. Have her doctors offered any solution to the cough suppression? There likely isn’t something that will work with certainty (or not that I’ve heard of yet) but things like an over-the-counter (OTC) cough suppressant might be good. Can you chat with them about this option for her? Make sure to mention to the physician whether her cough is a dry or productive/”wet” one.

      Hang in there!
      Char.

    • #25305
      John Weitner
      Participant

      Hello Reshma,

      I use a wedge pillow and it really helps. Around $40 Amazon..

      I want to ask the group what causes the coughing?  My doctor says it is from Acid Reflux. He gave me a med for it and I changed my diet and my coughing has dropped dramatically.  I’m guessing that acid reflux is not the only thing that triggers the coughing ?

       

       

       

    • #25310
      john styles
      Participant

      cough is a challenge, besides an elevated bed I have found a pillow turned to length of bed under the wedge or at top of bed then head pillow on top of pillow so the pillow elevates your lung or back Then starting 20  minutes prior to bed a Pepsid and then on the night stand prescription cough syrup just in case its needed.

    • #25313
      Reshma Joshi
      Participant

      Hello everyone!
      Thank you so much for your suggestions. It seems like the wedge pillow is very helpful but sadly they don’t have such pillows in Nepal. If we didn’t find such pillow I’ll try to courier it from here (Sweden).

      Also have you guys experienced making a different kind of sound while sleeping? My mom recently is making such sounds and we’re thinking of recording it and show it to her physician.

      Once again thank you so much for writing 🙏

       

      Warn regards,

      Reshma

      • This reply was modified 10 months ago by Charlene Marshall. Reason: formatting to remove code
    • #25315

      Great suggestions John, thanks for sharing!
      Char.

    • #25319

      Hi John,

      Thanks so much for writing and sharing your experience with Reshma and the forums group. I too find a wedge pillow helpful!

      What causes coughing for IPF/PF patients is a big question, as it sounds like there are lots of potential causes. I’m not a physician, so can’t say with any degree of medical certainty, but I’ve been told that it is the scarring in the lungs that act similar to an “itch” on our skin, which we relieve through coughing. Some physicians have told patients it is acid reflux/GERD, some say it is a post nasal drip, etc. I think it depends on the person likely, but I don’t think there is one primary cause. I’d be curious to hear others’ thoughts on this! I may write about this as a column in the near future, as I think others likely ponder this same question. Thanks for writing!
      Char.

    • #25322
      Wendy Dirks
      Participant

      Hi, Reshma – My husband tells me I make all sorts of bizarre noises when I sleep, especially if I’m on my back. Apparently they are high pitched moans. As for the excessive coughing at bedtime, that also happens to me and for some months now I use a very simple remedy – cough drops. As soon as I get into bed, whether at night or during the day for a nap, I suck on a lemon & honey cough drop and it really helps. Sometimes I need two, one after the other. I don’t know if this simple remedy might help your mother, but it works for me. Best wishes, Wendy

    • #25332
      Reshma Joshi
      Participant

      Hello Wendy,
      I appreciate all the advices that I get from this forum. We try everything possible to help our mom. So thank you very much for your advice 🙏

      Warm regards,

      Reshma

      • This reply was modified 10 months ago by Charlene Marshall. Reason: formatting to remove code
    • #25349
      Kate Smithson
      Participant

      Sorry for all of us ‘coughers’, (and those who have to listen to us!), but glad to read the comments!
      I was diagnosed with IPF two years ago.  The cough was what led to my diagnosis but it was quite mild until the past 6 months, when it became more frequent and lasted longer.  At times now I wake, coughing.
      Life is still pretty normal for me, apart from the cough – ie. no oxygen yet, but I do tire more easily than before IPF.  (Sometimes I wonder if just knowing I have it makes me tired!  It’s a great excuse for reading!)
      I have tried several of these suggestions: a daily anti-reflux tablet (eating late does seems to make it worse), OTC cough syrup (Walmart’s Equate works as well as any), a nasal spray (before IPF, I wasn’t aware of pose-nasal drip, but it seems part of the territory).  One of the best cough relievers for me is actually not a drug, but ‘Fisherman’s Friend‘ lozenges. I’ve tried the Original (my favourite) and Honey Lemon (sugar-free).
      Some days/nights, I cough a lot:  others rarely.  It is quite erratic but very tiring when it occurs.  The high humidity we’ve experienced this summer doesn’t help.
      My doctor has given me a prescription for Gabapentin, which I have not started yet.

      Thanks for all your help on this forum.  I particularly appreciate the commitment of Charlene, here in Ontario, and Mark, in the US, to respond to us all and keep us informed.  (I’ve been ‘a secret follower’ for almost 2 years, but rarely post.)

      Kate

    • #25352
      Mark Koziol
      Participant

      Hello Kate, thank you for sharing. I previously wrote a forum topic on gabapentin. I hope this treats your cough. Thank you so much for your kind words. They are very much appreciated. Take care and breath easy, Mark.

    • #25366
      Steve Dragoo
      Participant

      @reshma

      Hi Reshma – I do not know what access you have to supplements but I’ll list a few I know have helped me (and there are more but these 4 are the main ones I think).  The forums here are terrific, you will find lots of potential help on different ones and they are definitely useful. I have had IPF 4 years next month. I used to have an increasing cough but it has diminished significantly the past several months. I am not on O2 the past 15 months as it is hard to get here and rarely have a need.

      I am in the Philippines and have limited access to the supplements that help and they are expensive but so is going to the hospital and over here medicine is somewhat dubious.

      I researched and started taking serrapeptase (serra) 2 years ago and it quickly got rid of most of the mucous.  MAJOR CAUTION – Never take serrapeptase anywhere close to other meds or even food as it sees both as dead protein and that is what it eats – think scar tissue  (it has been used on some liver scar tissue with some success and suggested it may help the lungs but I can find no studies or evidence that is clear and helpful for lung scar tissue). At my age (71) That means pills dissolve faster and that can be dangerous.  I found out the hard way twice, 1 time with metformin with plummetted my blood sugar and the other was niacin – that was unpleasant. Serra is measured in SU (serrapeptase units). I was taking about 400,000 SU’s daily but recently reduced to 120,000 SU daily. I would take more but it is expensive here. Amazon has it readily available but no Amazon here.  If you decide to have your mother try it, make sure it is serrapeptase and no other added in supplements. Make sure to avoid food and other pills for 3 – 4 hours before and after.

      Recently there has been a lot of conversation on these forums about E.G.C.G. which is a green tea extract.  When I first started it I seemed to have some chest constriction as others may have noted but it stopped after 2 – 3 weeks and I seem to have more stamina but there are other things I do as well that help that.  Please read up on the E.G.C.G. forums as it would take a lot of cups of green tea to equal the 600 mg recommended daily. The cough has diminished a lot and now I hardly cough but I do have shortness of breath a couple of times a day for a few moments after climbing stairs.

      There is a doctor I have followed since the beginning of the ccp virus on YT and he has a solid recommendation – N.A.C. (N-Acetyl Cysteine) 600 mg.  He is exposed to the virus almost daily as he works in ICU lung cases. I believe there are a few people on these forums that know of it and may have used NAC.  I started about 3 months ago and it too seemed to help with the cough.

      The fourth supplement I believe helps significantly is nattokinase (natto) but if your mom is on any blood thinners this may affect them as it is a blood cleaner (not thinner). Natto is measured in FU’s and my wife and I take 2000 FU each, daily.

      There are several more supplements I take daily. At my age – 71 – I am more willing to try what research shows to be reasonable. There is no panacea for this terrible disease so it is incumbent on each of us to do our own due diligence and see what we can discover and share it if it helps.

      Sorry, this is so long but I have some ideas here (and not just mine) that will help your mom.

      Stay well – Steve

    • #25377
      Cindy Sears
      Participant

      @steve-dragoo   Hi Steve good to see you on here again. I have quietly followed you since I was diagnosed in 2019.  You had a lot of interesting information.  My symptom is coughing and I have noticed it has increased lately. Of the four meds you listed which one would you start with?  Do you know which one had the biggest results on cough?  I recognize that we are all different and what worked for you may not work for others.  Also you still taking the Wei products?

    • #25386
      Steve Dragoo
      Participant

      @rorcsearsrnaol-com

      Hi Cindy – I’ll try to answer you but my answer has to start with “it depends”. Each of us is different and have different symptoms/needs. I try to watch my body closely but I know I miss the opportunity of being objective and I am not a health professional.  To determine what might work best for you  – and that needs frequent updating as our bodies change all the time – try adding something and carefully observe changes, then add the next item and so on. I believe the several supplements I take daily generally synergize but I have a couple underlying medical issues that might influence my response to these supplements.

      If you have a mucous issue I recommend serrapeptase but always list a MAJOR CAUTION – do not take it anywhere close ( 3+ hours before or after) to pills or food. I usually take it at night at least 4 hours after dinner as I want to maximize serrapeptase’s effectiveness.

      I had taken 4 months of the expensive Wei Laboratories products and they helped a lot. I needed a maintenance dose several months ago (March-April) but they could not ship here to me. So my cough was slowly getting worse from around January until a few months ago.

      I started but stopped N.A.C. in May but started it again several weeks ago. I started some strong cups of green tea because at first, I could not get the E.G.C.G. extract. Once I started EGCG and the NAC my cough got better in a few weeks. So much so a friend I talked to last week and had not talked to since March noticed my cough was much less.

      Between these 3, I might suggest EGCG first unless you have a serious mucous issue then serrapeptase first. I take the NAC because a couple here have mentioned it a long time ago and a recent video from a doctor I follow better explained why he takes it and he is definitely a physician/scientist at Loma Linda Hospital treating COVID 19 (ccp virus). Importantly food is a key ingredient to help mitigate your cough and I too try to avoid inflammatory foods but still love making homemade pizza – hahaha.

      Again I believe what I take all help:
      Nattokinase

      Serrapeptase

      D3 with K2m7

      B complex

      Fish oil

      Co-enzyme Q10

      EGCG

      NAC

      Metformin (for diabetes but it may help with some cancers (unknown))

      Zinc – caution

      Hope this answer will help you because I am reluctant to just state this or that is best for you or to anyone else.

      Stay well – Steve

    • #25387
      Reshma Joshi
      Participant

      Hi Steve

      Thank you so much for your advices and for all the information. My mom lives in Nepal and they have very limited resources and medications for the IPF patients. It’s not like US or Canada where they have pulmonary rehabs and lot of options for medications. My mom has her follow up in a week so I’ll them to talk about the medicine that you have suggested.

      Once again thank you 🙏

       

      Take care and stay healthy.

      Reshma

    • #25388
      Steve Dragoo
      Participant

      @Reshma

      Hi Reshma – SInce I am in the Philippines, I source supplements from various places. When hydroxychloroquine was suggested I sourced in India but did not buy because no international shipping was allowed inbound here at the time. So maybe you can source there too.  Doctors  (western doctors) won’t generally recommend supplements but might say if you have had success to keep going.

      Success to you and your mom.

      Steve

    • #25404
      Jackie Kalina
      Participant

      Hi Kate.  I was diagnosed in April of this year. No cough or oxygen yet.  I am VERY tired and do not know if it is IPF OR the meds OFEV?  My oxygen rarely drops below 90’s.  I can walk for 15 minutes no problem but I feel like a sloth.  NO uphill.  With the Covid, CA fires and smoke and heat at 102 I am house quarantined.  Wondering if you were on OFEV?  Thanks, Jackie   I will be 80 next month.

    • #25407
      Steve Dragoo
      Participant

      @jackie-leko-kalina

      Hi Jackie – I am sure you have done this but maybe check your vitamin D level and for anemia.  I also take a good vitamin B complex and like the results.

      Steve

    • #25408
      Reshma Joshi
      Participant

      Hi @steve-dragoo

      I will check what we can do. Thank you for your advice and concern 🙏

       

      Warm wishes,

      Reshma

      • This reply was modified 9 months, 4 weeks ago by Mark Koziol.
      • This reply was modified 9 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #25411
      Susan Howitt
      Participant

      Hi

      The nasal drip causes a lot of coughing, I have found that just a tiny little bit of Vicks vapour rub just around the nostrils helps dispel it and along with it the irritation cough, nasal sprays unfortunately I have found just keep the problem going.  I always have water to hand at night plus if necessary a cough syrup, I use Bronchocod.  My doctor gave me Prednisone for the cough, works wonders but of course that is prescription only

      A wedge pillow can be made up of ordinary pillows of decreasing thicknesses, maybe two at the top, being put under the head of the mattress just until they reach the waist area (quite a thin one there)  while waiting for the real thing.  I have now had to add pillows to my wedge as I now need higher, still manage to sleep on my left side with a pillow under backside to stop me slipping down the bed.  I did buy a wedge pillow for side sleepers, didn’t get on with it at all, cost a fortune too.  A large piece of foam could also be fashioned into a wedge pillow, as it is going under the mattress does it really matter what it looks like  Some people have their wedge pillow over the mattress, my back is now so sensitive that I couldn’t bear the little lump (end of pillow) under my waist and of course it negated my memory foam topper.

    • #25417

      Thanks so much for sharing Susan, great tips! I’ll keep the Vick’s vapour rub in mind for myself as well 🙂

      Char.

    • #25426
      Reshma Joshi
      Participant

      Hi Susan

      The things you suggested are household things which we can find easily around us. We’ll definitely try it for our mom. Thank you so much for the great tips 🙏

      Warm regards,

      Reshma

       

    • #25427
      Susan Howitt
      Participant

      When I say a little Vicks vapour rub I really do mean a tiny bit, just the merest little smear, too much and the vapour hits the back of your throat and of course you will cough.

    • #25429
      Reshma Joshi
      Participant

      Okay got it. Thank you Susan ❤️

    • #25478
      Heather
      Participant

      I’d like to help my husband manage his “dry cough” — it was the first indicator that something was wrong. It’s gotten so bad that his co-workers ask/comment on it and he’s not comfortable telling them that he has IPF. I want him to be able to have meetings and phone calls without the persistent cough. I really appreciate all the tips and will be sharing them with him.

       

    • #25479
      Susan Howitt
      Participant

      Hi Heather

       

      Sorry about your husbands diagnosis.

      For some people Prednisolone works for other Gabapentine  (French spelling on both) I have tried both and for me they both work. Both are prescription, at least here they are.

      Best of luck  Sue

    • #25487
      Mark Koziol
      Participant

      Hello Heather, I was about the same age as your husband when I was diagnosed with ipf. I am sure his co-workers know in their heart something is going on with your husband if they are making comments. People who are healthy don’t cough all the time. If has ipf they usually don’t prescribe prednisone to ipf patients but prescribe mostly for pulmonary fibrosis patients. Gabapentin has worked for some members and if you scroll up on this forum topic you will find some articles and also others experiences with gabapentin. Please talk to his pulmonologist and hopefully they can ease the coughing. It sounds like your husband will be a good candidate for transplant if need be. Some centers try to avoid prescribing anything else but an anti-fibrotic medicine if he will qualify for a transplant. Good luck, Mark.

    • #25505
      Paul
      Participant

      A word of caution.  I have been living with cough drops nearly 24/7. They do work. I have not had a cavity in at least 15 years.  The last dental check up revealed 10 cavities. The dentist attributed them to sugar from the cough drops plus dry mouth from not drinking enough water. Be careful out there.

    • #25511
      Mark Koziol
      Participant

      Hello Paul, thank you for sharing about the dental dangers of eating too many cough drops. You bring up a valid point about the sugar content in a cough drops. I have never associated that could be a problem. The dry mouth I have found to be true because of the cough drops. They always make me thirsty. Thank you again for sharing, Mark.

    • #25512
      Susan Howitt
      Participant

      Dry mouth seems to go with the syndrome and dry mouth equals cavities without the antiseptic properties of saliva, that is what I have been told.

       

       

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