This topic contains 17 replies, has 4 voices, and was last updated by  Jen Cueva 4 months, 1 week ago.

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  • #16962
     Brittany Foster 
    Keymaster

    Did you ever notice yourself getting more short of breath when you are laying down flat? Did you feel like you couldn’t take a breath in in certain sleeping positions? Have you been prescribed nighttime oxygen to help with this? Are you using machines at night like BIPAP or CPAP to help with your breathing?

    If you can relate to any of these questions then you have probably asked yourself, “what is causing this?” I personally have experienced and still do experience difficulty with laying flat when I’m sleeping or when I am getting testing done such as an MRI or scan where I need to lay flat on the table. My medical team has told me that this is because the lungs get even more restrictive when the body is positioned laying flat on my back.

    I have helped this by using oxygen and my BIPAP (Noninvasive ventilation NIV) machine at night, and have tried to sleep slightly propped up or with my knees and lower legs propped up if I have to be flat for a particular reason like an MRI.

    There is information about breathing difficulty while lying down from a hospital in New York . This link may be useful for others that are experiencing this difficulty with sleep and with resting. It suggests questions to ask your doctor, possible causes, and signs to look out for.

    If you are experiencing shortness of breath while lying down flat and it has been waking you up in the middle of the night or you have noticed recent changes, be sure to speak to a medical professional about this and get the proper testing or recommendations from them.

  • #16975
     Jen Cueva 
    Participant

    Thanks for the link, Brittany!

    Yes, I, have issues lying flat as I just posted in another post. I have talked to staff as well at the hospital and they’ve told me the same. They give me a pillow and fold it in half as some tests they want us as flat as possible. They are always very helpful and try and get the tests done quickly as possible. I also use my oxygen for these tests to help as they suggested.

    I use oxygen at night, I was tested for Sleep Apnea years ago. They said my breathing was very shallow and my oxygen drops but I didn’t stop breathing, this makes sense as to why my hubby often says he lies awake watching me sleep, when I breathe so shallow.

    I am fortunate enough to have an adjustable bed now , but use 2-3 pillows when lying on the couch and still a lumbar and large pillow at night , in my bed. Body pillows are great for side sleepers as well and great snuggle buddies, lol

    • #16980
       Brittany Foster 
      Keymaster

      Jen,
      Those adjustable beds must be great! I saw those when I went to the furniture store to pick out my new bed around Christmas time but WOAH they were expensive ! But I do use body pillows and love my big head rest pillows that I can prop up and read on and sometimes end up falling asleep on them too. When they can’t do much about my body position of the chest or head during and MRI, they make sure you prop my feet up which helps relieve some of the workload of the heart and helps bring circulation to the lungs and heart a little easier.

      • #16984
         Jen Cueva 
        Participant

        Yes, Brittany , it is great for my breathing as well as my hubby’s snoring! Haha

        The adjustable beds can be quite costly! We were fortunate to catch ours at a great time , they offered a fantastic promotion! It was zero interest for 3 years we chose a closeout model, so that was a huge discount which helped us.

        I am glad you mention about propping your feet up to help with body alignment I know often they can can use pillows to place under our knees to help with this too.

      • #16997
         Brittany Foster 
        Keymaster

        you’re definitely lucky that you got a good deal for that! 3 years interest free sounds awesome !! Such a good time to buy it then. It is worth it. I know I’d pay a large price to try and get my boyfriend to stop snoring so loudly hahahaha.

      • #17009
         Jen Cueva 
        Participant

        I can relate to that snoring, lol
        The adjustable bed helps but it doesn’t eliminate it totally so I’m often kicking my hubby at night , do you do the same to your boyfriend ? That was always my way to get him to sale yo and change positions so it would help the snoring , lol

      • #17021
         Brittany Foster 
        Keymaster

        Jen,
        That’s hilarious that you give a little kick to startle him into rolling over LOL. I worry about the snoring because I know this can be a sign of apnea. But honestly, I used to do the rolling over, kicking, making a loud noise to wake him up but he ends up just going back to it. Now, I sleep in another room sometimes so I don’t risk my “beauty sleep”.

      • #17030
         Jen Cueva 
        Participant

        Brittany , ohh that’s funny ….I also have been known to elbow him as well. Poor guy, thankfully he’s bigger than I am or he would probably wake up with bruises some days.

        Rainy day couple naps are impossible on the couch because just as I’m almost asleep I hear a loud snore . When I was in the hospital one of my nurses thought it was the cutest thing that I yell “ Shhh “ at night when he’s sleeping and snores in the chair next to me , lol
        He don’t think it’s so cute .

      • #17034
         Brittany Foster 
        Keymaster

        Hahahaha! “Cute” would be the last thing I would call it. It’s strange because I have ALWAYS had better sleep alone in my own space vs havin someone laying next to me. I sweat a lot in my sleep and my body temperature rises a lot (this was measured and my sweat was measured in a sleep study) so this is another reason why I don’t mind having my own space to sleep. So it’s a win, win!

      • #17046
         Jen Cueva 
        Participant

        I know right , I was thinking it wasn’t cute…

        Interesting as I wake up sweating at times and not sure of it’s just age or other things related to my PH. I often find myself getting the best sleep once my hubby has left for work, lol
        I do like to be beside him but it sees when Sasha ( our fur baby ) and I reposition once he leaves I go into a deeper sleep, Sasha too, lol

    • #17095
       Colleen Steele 
      Keymaster

      Sleeping flat was impossible for my son when he had PH. He slept with so many pillows every night that he was practically sleeping sitting up. As his PH progressed MRI’s and other scans would cause high anxiety and sometimes tears because breathing would become terrifyingly difficult. Laying flat would make him feel like he was suffocating and trigger chest pain. I can imagine that an adjustable bed might have made a difference for him.

      • #17097
         Jen Cueva 
        Participant

        Colleen, I can’t imagine watching your son go through( that and everything else , including the transplant. I know sometimes those tests give me anxiety as well as I know I’ll have to lie flight, even with the oxygen.

        The adjustable bed has been great , I recommend if anyone has issues and needs to elevate their head to purchase one. If you watch for sales and special promotions , it’s not as heavy on the wallet. I know many of us PH patients and families are on limited budgets , especially due to meds and medical costs. ( I’m sure you’ve learned hat from your own experience).

      • #17100
         Brittany Foster 
        Keymaster

        Colleen,
        The scans are always the worst part of it, especially because the hard surface that you’re laying flat on doesn’t help much either. And the techs that are doing it don’t always know the whole medical background and sometimes those tests and scans can be urgent so it’s not like they have the time to review any of the medical chart beforehand. But, with the scans it has always helped when they at least can use some pillows to put under my knees or legs. It still gets scary though and a very claustrophobic feeling when it feels like you can’t get in that air. I can empathize with the anxiety that went along with this for him.

  • #17108
     Jimi Mcintosh 
    Participant

    I have dealt with breathing issues when laying flat for years, it is easier to be propped up or lay on the left or right side. MRI, CAT scans have to be done sitting up or in an open machine.
    I dread any procedures that require being flat. My CPAP with Oxygen was working, but it is getting difficult to
    Sleep more than 3-4 hours. It seems tat my disease is progressing and I do not know what the next step will be.

    Locate a facility that offers open MRI , or CAT scans in a seating position. You have to make your needs known. stress and anxiety will alter your test results. I sometimes do not realize that I am wheezing, trying to get a good breath

    • #17135
       Jen Cueva 
      Participant

      You make some great points , Jimi!
      You definitely need to make your needs known, some of the techs don’t have time and/or knowledge and may assume you’re fine unless you speak up. These are the times I like to educate about PH, even if it’s fast.

      Sorry you’re sleeping is not good, even with the CPAP, I hope that you and your doctors can find some ways to help you with some comfort through your progression.

      • #17153
         Brittany Foster 
        Keymaster

        So true Jen,
        Education during these times is so important! You never know how it could impact someone for the better or help them for future patients.

      • #17160
         Jen Cueva 
        Participant

        Yes, you never know , Brittany! I had one nurse once tell me she was so glad I took the time to share and educate her on PH as she really didn’t receive much education on PH in nursing school.

        Jimi, I’ve heard of the open MRI but not any tests you can sit up for. My hubby is claustrophobic and needed a MRI, so he was sent to the open MRI and that helped him. I’ve never had an open one, unfortunately. It definitely gets my anxiety level up there . I take my oxygen and take my Ativan before the procedure. I also try and do some breathing exercises too. Can you share what ones you’ve done sitting up?

    • #17152
       Brittany Foster 
      Keymaster

      So true Jimi
      It is always best to care for our mental health and advocate for our needs the best we can to get the best results possible and not feel like we are being limited by our anxiety. Is there anything in particular that helps you with your anxiety during testing so you can get the most accurate tests? That is also a great suggestion you made about those particular kinds of scans that allow you to sit up and be more comfortable. I bet that would make a huge difference.

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