Symptoms of Laying Flat with Pulmonary Fibrosis.

[Steve Daggett]

I rarely am able to lay flat. I typically sleep with at least 2 pillows, sometimes 3. It’s too uncomfortable to lie flat on my back. I either have to elevate my head/upper body and/or lay on my side.

When I first lay down I typically have a few coughing episodes, then it calms down. I’ve resorted to having to take an OTC sleep aid (like ZZZQuil) to help get to sleep. Once I’m asleep, I’m usually OK for 6-7 hours.

Sometimes I wake up with my cannula/tubing wrapped around my body once or twice, or the nasal part slips off and blows into my eye 🙂

[Charlene Marshall]

Hi Steve,

Thanks for getting in touch and sharing your experience(s) with us through this thread!

Unfortunately I too am no longer to lay flat and have to be propped up with many pillows to suppress my nighttime coughing. The crappy thing is that this isn’t good for my neck at all, so then I get a sore back. Do you find the excess pillows throw off your neck / back and cause them discomfort? I’m still working on the ‘perfect’ elevation to be comfortable and alleviate the coughing. Glad to hear that you’re able to get at least a solid 6-7 hours worth of sleeping in. I should try a cough medicine before bed, this isn’t something I get in the habit of doing on the regular but it seems to be helpful to many others living with IPF.

LOL! Your comment about the cannula made me laugh out loud, because I can relate and as a result, visualize that happening to any of us using supplemental oxygen. Thanks for making my day with that 🙂

Kind regards,
Charlene.

[Steve Daggett]

Once I was awakened (still half asleep) thinking I was at the beach on a windy day. Turns out my cannula was blowing in my ear!

My pulmonologist prescribed Tessalon Perles as needed for coughing, and it seems to help. I don’t take it every day.
https://en.wikipedia.org/wiki/Benzonatate

I typically fall asleep propped up by 2 pillows, but once I fall asleep I’m out. My wife says I could sleep even if a bomb went off! When I wake and my heart rate naturally increases, I’ll have a doozy of a coughing spell (my wife says it sounds like my lungs are coming out), but after that passes, I recover and continue getting up.
I will also have a similar cough attack when I first get into bed. I’ve started sitting up first, allowing myself to ‘cough it out’, then when it stops I’ll gently lay down – like I’m tricking my body into lying down. That helps me!

[Charlene Marshall]

Hi Steve,

Thanks for getting back to me and sharing that story – I burst out loud laughing at the fact that the cannula was blowing in your ear, instead of your nose. Laughing with you of course, not at you by any means ….this is something I would do!

Glad to hear the prescription seems to work to alleviate your coughing, that is good news. It is so strange what works for some folks, doesn’t work for others and the wide array of things pulmonologists will prescribe to help with symptom management. Sorry if I’ve already asked you this, it may have been awhile ago but do you use any puffers for your cough Steve? I have 4 but I know others have said that none they’ve tried helped them…

Does anything help with the morning cough, or is it just something you have to ride out? Sounds like you’ve got a strategy a bit for the evening/bedtime cough. So glad that option works for you!

It is really hot here right now, the last two days are feeling like 45 degrees celsius with the humidex so I’ve had my fair share of coughing the past couple of days. Frustrating to say the least!

Hope you’re doing well!
Charlene.

[Steve Daggett]

Hi Charlene!

You must be either in Britain or Australia? (Celsius VS. Fahrenheit) But I know that’s hot!

Regarding puffers/inhalers, before my diagnosis my doc thought I might have asthma. We tried several types of puffers, but to no avail. Probably tried 6 over 2 years. Nothing helped.

In the morning I just ride it out. The cough medication tends to make you drowsy, which wouldn’t work well when I’m trying to wake up!

Hope that helps! Please don’t hesitate to inquire about anything!

Steve

 

[Charlene Marshall]

Hi Steve,

Good guesses – I wish I was in Australia as I love that country, but I am actually in Canada. Yes, those temperatures are wildly hot…thank goodness I could be on the beach this weekend, oxygen in tow! It was nice to cool off in the water, although definitely was hot and the temperatures aren’t planned on breaking for a number of weeks yet.

 

It does help, thank you for sharing. My inhaler combination is still in the works… sometimes I think it helps relieve the coughing, other times I don’t think it does. It’s hard to tell for me!

Take care and hope you’re doing well.

 

Charlene.

[Sandra Seabrooks Bush Connor]

I can only lay flat for a short time, however my bed is not completely flat.  We have an adjustable one and it’s raised up a bit at the head.  But I go to my back when one of my nostrils plugs, which happens a lot when I go to bed.  It helps to clear it up especially when I use the Ayr saline, but it doesn’t always help.  It just magically clears when I get up.  I don’t cough much now that I use an inhaler, so that’s not a bother.

As for the MRI, they put this block under my knees that raises them up and this helps to keep my back flat and very comfortable. They just automatically put it there.

[Charlene Marshall]

Hi Sandra,

Thanks so much for getting in touch with me about your experience(s) of laying flat with PF. I think I may need to consider a bed that isn’t entirely flat, many folks on our forums have shared how beneficial this is for them. If I may ask, which inhaler do you use and find helpful? I have 4 that I use now and am finally making some progress with the suppressing the cough, but not a lot. Hopefully yours is helpful!

That is also helpful information for me to learn about the board on the MRI machine. I have an MRI again on August 18th so I think I will suggest this to them and give it a try. Thanks for sharing!

Hope you’re keeping well.
Kind regards,
Charlene.

[Judi Zoboli]

I don’t sleep in a bed anymore, but in my recliner.  I’m still using a canula and not a CPAP.  I have a terrible time laying completely flat and if I need an MRI, I simply do the best I can with raised knees and a pillow under them.  My coughing fits last and are very frightening.  I live alone and fear that I’ll choke before the coughing subsides.

[Charlene Marshall]

Hi Judi,

Welcome to the PF forums – thanks for sharing your experiences in this thread. What are your oxygen requirements, if I may ask? Sleeping in a recliner is a good idea to be propped up, but do you find other parts of your body get sore or uncomfortable? I can imagine how upsetting and frightening it would be with the coughing fits. I have this experience too, and it is very upsetting. Do you use any inhalers to alleviate the cough? It might be worth a try …

 

Take care,
Charlene.

[Susan Howitt]

Feel for you Judi

I also live alone and it can be very scary. The worst coughing fit I had was when I had a broncoscopy, numbing spray didn’t work and the tube make me cough so badly Was given a Symbicort inhaler, has such a bad reaction to it, whole body cramps, even my lungs and heart felt like they were cramped up, felt like I was about to die, apparently I am allergic to the bronchodilator in it. I don’t cough any more and am very thankful for the 1/2 tablet that did that. I sometime manage to get half an hours shut eye in my recliner too, never sit in an ordinary chair any more.

[Charlene Marshall]

Hi Susan,

I know your reply was to Judi – I just had to let you know that I’ve also had a horrible coughing reaction to a bronchoscopy, and my body doesn’t like Symbicort either. Now I actually can’t use any turbuhalers because I don’t have a strong enough inhalation to take in the meds vs. a regular inhaler. I also agree, living alone with IPF can be very scary!

Take care,
Charlene.

[Sandra Seabrooks Bush Connor]

Charlene, I use Asmanex.  I hardly ever cough and it has definitely improved my SOB.

I hope the block under your knees helps to make you more comfortable.

[Charlene Marshall]

Hi Sandra,

Thanks for much for getting back to me. I haven’t heard of that inhaler before, but I am so glad to hear it is working for you. I am having a hard time using my turbuhalers now (Symbicort, etc) as I can’t get a deep enough breath in for it. Now I am using the Spiriva respimat because I don’t have to inhale the steroid. It seems to work in conjunction with others meds for me.

Thanks for your well wishes. I hope you’re doing alright as well!

Kind regards,
Charlene.

[gil]

Charlene,

I only lay flat for a short time and with two or three pillows.  Sometimes when I watch TV and have to lay flat  I will also put a pillow(s) under my knee(s).

I find that tea,  non caffeine, helps reduce coughing, I usually drink a cup before going to bed.  I find that tea from orange blossoms reduces stress and helps me fall asleep.  Too bad my orange tree doesn’t blossom all year, sometimes I will take a sleeping pill but I try not using pills.

I hope all is well and that the MRI come out negative.

gil

 

[Charlene Marshall]

Hi Gil,

Thanks for getting in touch and sharing your experience(s) with us regarding this topic!

I need to try the pillow(s) under my knees as this really seems to help others per their responses on this forum. Glad it is something that is working for you as well. That is also a good idea to remember about tea, some herbal blends I know have specific ingredients in it that are to help with sleep. I have so much tea in my cupboard but I rarely turn to it for sleep support and should more.

You have an orange blossom tree that you can make tea out of? That is really cool. I’d love to be able to make my own tea! I bet it is really fresh. Does it bloom most of the year or only spring and summer months? I know it is warmer there longer than it is here…

Thanks again for connecting. I am doing well, and hope you are as well 🙂
Cheers,
Charlene.

[Michael Lamkin]

I lie on my back sometimes but prefer lying on my side.

[Charlene Marshall]

Hi Michael,

Thanks so much for your reply and contributing your experience to this thread. When you’re on your side, are you propped up at all with pillows, or even knee support? Some folks have told me about wedges working really well, especially for sleeping on their side.

Thanks again for sharing!
Kind regards,
Charlene.

[Cloud Mason]

Hi Charlene,

For most of my life, I thought that I slept on my side throughout the night until I had a sleep study done. After the study, my neurologist told me that I have acute sleep apnea. He also informed me that although I go to sleep and wake up on my side, the remainder of the night I sleep flat on my back. I had a knee replacement three years ago (too much racquetball and backpacking). After the operation, I got accustomed to going to sleep on my back and continued to do so. I moved my pillow from under my head to under right knee and lower leg. Having one knee bent also keeps my lower back from hurting.

I was diagnosed with IPF a little over a year ago. I believe the cause is a result of me sleeping flat on my back without a head pillow and at some point, I aspirated acid from my stomach into my lungs. I have a serious case of GERD that started years ago.

Since my IPF diagnosis, the most common time that I have a coughing fit is when I first lie down on my back, so it often takes me a while to get to sleep. I recently bought a Bed Wedge, FitPlus wedge pillow on Amazon (1.5 Inches Memory Foam, 2 Year Warranty, 24″ x 28″ x 7.5″). It has helped to significantly reduce those initial coughing fits when I lie down. While it took a week or so for me to get accustomed to it, I sleep much better now with much less coughing when I get into bed.

Best of luck,
Cloud

[Charlene Marshall]

Hi Cloud,

Thanks so much for getting in touch and sharing your experience on this topic. I figured I wasn’t the only one struggling with being able to lay flat since my IPF diagnosis, but I had no idea how many others struggled with this as well. It is nice to know that I’m not alone, and so appreciate people sharing there experiences with this as well.

Did you do the sleep study specifically to find out if you had sleep apnea or was this something that your pulmonologist wanted you to do due to your IPF? Just curious as I know lots of patients who have had sleep studies done. Glad to hear adjusting pillows is helpful for you, I need to try this as others have shared it with me as well.

Sorry to hear you’re also dealing with GERD. Is this being managed/treated for you? Hopefully you don’t have many side effects from this and I’m so glad to hear the sleeping wedge has been helpful! Does this support your whole upper body, allowing you to sleep propped up, or is it under your shoulders and neck?

Thanks for sharing and wishing you well!
Charlene.

[Cloud Mason]

The sleep study was done several years prior to the IPF diagnosis. I had been experiencing Excessive Daytime Sleepiness. After a plethora of tests and different medications, my GP finally decided that a sleep study was called for. I had gained a lot of weight in the prior year (~30 pounds) which my neurologist said often triggers sleep apnea. I thought I had a brain tumor or some horrible disease like early onset Alzheimers, which my mother had. Then two years ago I had an ischemic stroke, minor in the context of all strokes, yet I still suffer from many of the effects of damage done including post-stroke fatigue, poor fine motor skills on my left side that have greatly reduced my typing skills – this is one of the more troubling outcomes as I am a software engineer and use a keyboard all day. When the ER neurologist visited me after receiving the MRI results, he said, “Yes, you have just experienced a lacunar thalamic ischemic stroke in the right side of your brain, but the scan also reveals that you previously had a stroke in your basal ganglia.” That second part was news to me. They are often referred to as sleeping strokes and people usually have no clue that they have had a stroke. More recent research correlates this type of stroke with Excessive Daytime Sleepiness, which I still have but not to the same degree since I started using a C-PAP machine.

The GERD is well controlled with Protonix, which I’ve taken for years and wondered about its long-term side effects. Fortunately, the many articles and papers claiming that this class of drug would cause a variety of problems have all been debunked.

The wedge pillow supports my entire upper body. I do use a very soft pillow, burying my head deep into it such that most of the stuffing ends up on the sides of my head keeping me from waking up with a neck ache.

[Charlene Marshall]

Hi Cloud,

Thanks for getting back in touch with me – wow, what a tough journey you’ve had even before your IPF diagnosis. I am so sorry to hear of your strokes, that must have been really scary for you. Did you have to do anything immediately following the strokes, to ensure they didn’t happen again? Ie. address the daytime sleepiness or adjust medications to be preventative of future strokes. I bet there was a lot of rehabilitation involved, as you say for things like loss of fine motor skills, etc. I’m glad the C-PAP has seemed to help you with the sleepiness, that is good news. How long have you been on that?

Glad the GERD is well controlled for you as well, and that there isn’t any literature stating it causes issues long-term.

I suspect the wedge pillow you describe is similar to the one another member uses and told me about. I’ll need to look into getting one of these for sure. Thanks for such a thorough response Cloud, and I hope you get a chance to enjoy your weekend.

Sincerely,
Charlene.

[Susan Howitt]

I cannot lie on my back, too painful but on my left side I am fine with just one memory foam pillow. I have great trouble sleeping, most nights bed at 2pm and am awake at least twice during the night and fully awake at 8am. I no longer cough day and night thanks to tiny daily dose of prednisolone, (spelling here in France) and have managed through diet to curb the acid reflux.
I have CPFE, the fibrosis is from a known cause not idiopathic. I can find so little about this. Got hospital appointment tomorrow to find out how far advanced I am, how to treat, if at all, I only have one kidney so this may be the deciding fact for going on Esbriet or not.

Bonne soirée Sue

[Charlene Marshall]

Hi Susan,

Thanks for sharing your experience on this topic with us! Is it painful to lay on your back breathing-wise (almost like your lungs are being crushed?) or is it a pain due to muscle discomfort? I’m always curious as I am noticing more physical discomfort in my body overall as my IPF progresses. I’m glad a foam wedge is helpful for you though as a solution!

Kudos for curbing the cough, and focusing on diet to reduce the acid reflux. That must make such a difference for you, in addition to the Prednisolone. Sleeping trouble is currently what is the worst thing for me right now, I find I am dreading nighttime because I know I will just lay awake frustrated for a few hours before falling asleep. I’m going to try CBD oil tonight to see if it makes any difference!

Goodluck with the appointment, I hope all goes well. Check back if you feel upto it, and let us know how you managed. Thinking of you!

Regards,
Charlene

[Susan Howitt]

Hi Charlene

Lying on my back is just very uncomfortable , think it is muscles because I get a sort of cramp. Yep the insomnia is a right B…….. I also thought of CBD oil but illegal here still, well not illegal it is just that you cannot legally get it yet if that makes sense. Got it sent from Holland for my dog with cancer though but it is not the same thing.

My pillow is not a foam wedge just a pillow with curves in, works well for me. In my recliner I have a long memory foam pillow as I find it too hard without, in fact anything that touches my back causes discomfort.

Back from the hospital with loads more tests to have done, new MRI scan, x rays of my hands, got to find a heart specialist that does a *capillaroscopie* (French spelling) as tests have come back positive for diffuse scleroderma, can I get many more organ killing diseases at once? Beginning to understand why I went down hill so very fast

A bientôt Sue