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    • #14997
      Bill
      Participant

      I find that I have shortness of breath going from standing to laying in bed. It goes away after about 30 seconds to a minute, but just wondering if anyone else has this symptom and exactly what causes it. I am lucky enough to be able to walk and exercise without any problems. This is not a new symptom, but one that I’ve had for awhile. Thanks to anyone who can comment.

    • #15005
      Kathleen Sheffer
      Participant

      Hi Bill, I experienced what you’re describing more and more as I went into heart failure. Other friends with congenital heart disease described it too. Just laying on my back caused my heart to pound and made me feel short of breath. I don’t know if this is what is going on for you and I’m not saying you’re in heart failure (there is a wide range of severity as well), but it may be improved by laying on your side when you first get in bed. I’m not sure, but might be worth a try.

      I’m glad to hear you can exercise. I found this sensation especially strange because it would happen a few minutes after laying down and not after any exertion. Interested to hear from others who have experienced similar symptoms!

      • #16105
        ronald cole
        Participant

        Hey Bill,

        This would be a direct question for your Cardiologist. Shortness of breath like that is not to be alarmed, just check it out to make you feel good.

        Ron

    • #15015
      Bill
      Participant

      Thanks a lot for your feedback, Kathleen. It IS very strange. It Is not getting worse, thank goodnesss, but it happens every night. Just curious as to is going on medically. Anyone else?

      • #15029
        Brittany Foster
        Keymaster

        Hi Bill,
        Just reading you post now. Have you checked your heart rate when this is happening? My heart rate is very sensitive to changes in position. My rate can shoot to as high as 160 with just standing and when I’m laying down it drops down to 60 again. This fluctuation in heart rate causes shortness of breath sometimes for me. If you have a pulse ox monitor that measures your heart rate this would be an easy way to assess this yourself and then report it back to your doctor. Also If you have a blood pressure cuff you could report if there are any dramatic changes in blood pressure when this is going on. I would suggest sleeping propped up on a few pillows so you aren’t as flat. The blood circulates differently when your are standing vs laying flat. Definitely record any changes though and data collected with a blood pressure monitor or pulse ox monitor and report to your doctor to get a better understanding or evaluation of what’s going on and how to manage it! Wishing you the best. Keep us updated.

    • #15043
      Bill
      Participant

      Brittany, thanks for the info. I will do that tonight. Funny thing is, I don’t feel a need to sleep propped up because the shortness of breath goes away within a minute and everything seems normal. It’s just going from standing to initially getting in bed. I’ll keep you posted. Thanks again for your thoughts.
      Bill

      • #15045
        Brittany Foster
        Keymaster

        Bill,
        You’re welcome! Speaking from personal experience with this and that was half of my problem was the dysregulation of blood pressure and heart rate that was happening with position change especially something so drastic from standing to laying. I’d be interested to know what you see happening. Keep us posted here if you want !

    • #15652
      Judy
      Participant

      Diagnosed with exercise induced pulmonary hypertension I was also surprised when I had shortness of breath when lying down in bed. I don’t understand this. But…I have found that sitting up straight in bed , propped with pillows for a few minutes before really lying down takes care of the problem.

    • #15653
      Judy
      Participant

      Shortness of breath (and sometimes chest pain) is my main problem. There have been times when I feel it coming on and I think “just a few more steps to the car” which seems to trigger a tipping point so that then I am panting and completely out of breath for maybe 30 seconds, thinking I’m going to die. I have learned that at the first sign of shortness of breath to absolutely stop in my tracks (no more just a few steps…). I then can regain my breathing and carry on. Anyone else noticed this pattern?

      • #15661
        Brittany Foster
        Keymaster

        Hi Judy,
        I was also diagnosed with exertional PH and experience a lot of shorthess of breath with laying down. I think that you are doing the right thing by trying to stay propped up with some pillows. It is harder for my chest wall to expand when I’m laying down so this causes a lot of difficulty for me with breathing. I was curious if you are on oxygen or if they have checked your oxygen on exertion? For me, I have mild PH with exertion but my oxygen levels dropped significantly to sometimes less than 80% without oxygen. The doctors can test this right in the office with a pulse ox or you can always pre test it yourself if you’re walking with the pulse ox on. I always try to advocate for that for others especially if the shortness of breath is with exertion! Let me know if you decide to test this out yourself but definitely bring that up to your doc and have them test it too.

    • #15675
      Anthony Collins
      Participant

      Hi Bill

      My experience of breathing issues upon lying down began in late 2011, after a cardiac intervention. It was not “breathlessness” as normally understood; I couldn’t breathe at all and would sit bolt upright in a panic. Following a few seconds of major stress, breathing would resume. The issue resolved itself after a rough five and a half months and I have never experienced it since. That is not the case with arrhythmias. Over 95% of my many tachycardic episodes in the last seven years have commenced within minutes of my lying down at night, also while I am still awake. This is when my oxygen saturation drops to its lowest. (Maybe the tachycardia is triggered as some sort of biological compensatory mechanism – not sure of this.) Five months ago I moved to a trial of nocturnal oxygen. Upon finding that lying down immediately after putting my nasal cannula in did not always prevent an episode, I began standing up with the oxygen on for ten minutes before I lay down. With my sats rising into the low 90s while I was upright, that did seem to make the difference. After quite a few weeks of using this technique, I have recently gone back to starting the oxygen supplementation just before I lie down. So far, so good – now tachycardia-free for two months (a record for me). From my reading of posts, including those on this site, I have deduced that it is reasonably common for PH sufferers to be symptomatic in one or more ways as soon as they go to bed. My granddad certainly was – and that was almost seventy years ago, when they called it “asthma’! All the best.

      • #15678
        Brittany Foster
        Keymaster

        Hi Anthony,
        Thank you for sharing all of that with the forums. I can understand this 100%. my arrythmias of tachycardia and SVT were recorded more when I wasn’t given oxygen. When I got on oxygen therapy these episodes reduced significantly. My electrophysiologist seemed to think that there was a connection between the two and that the heart had to work harder when the oxygen levels were dropping (which makes logical sense). Something that they did to help me with this tachycardia at night is to put me on a beta blocker an hour before bed that is an extended release one. Do you also have a cardiologist or electrophysiologist that tracks your symptoms of tachycardia? Maybe this would be something you could bring up and see if a medication may help with this because I know how unsettling it is to not be able to breathe and get enough oxygen and have a racing heart at the same time. It just triggers so much anxiety for me personally which adds to the fast heart rate ! I’m glad that you found some type of method that is helpful and are aware of the connection between your low oxygen levels and heart rate differences. I’m sure your doctors would be interested in this connection too! They are always willing to learn from us so make sure to advocate for yourself as much as possible 🙂

    • #15677
      Jimi Mcintosh
      Participant

      This most likely related to the sudden change in blood pressure. PH ( PAH) is
      A mystery disease, with mental and physical side effects. I get “winded “
      Moving from one position to another short flight of stairs, sitting in the same position too long. Try not to make sudden movements. Good luck

      • #15680
        Brittany Foster
        Keymaster

        Hi Jimi,
        changes in blood pressure definitely effect me too and also impact my heart rate. When my blood pressure drops with standing (orthostatic hypotension), my heart rate also increases with this and the oxygen levels drop. With the changes in blood pressure I am sometimes just not getting the right blood flow that my body needs, especially to the brain. These symptoms can become concerning when I feel light headed or even have spotty vision. Has the dizziness happened to your before where you feel very light headed and near passing out? I have had to make a lot of adjustments like wearing compression stockings when I can to help with the blood flow return and also made adjustments like you are making with taking it slow when switching positions from sitting to standing. Have you tried compression stockings and have you had any luck with them?

    • #15682
      Anthony Collins
      Participant

      Super efficiency – an almost instant reply, Brittany! I do have an EP and have been on a beta blocker for the last 25 years. Thanks for your interest.

    • #15714
      Randolph Reynolds
      Participant

      Brief reply to Judy,
      I have the same problem. If I have been sitting for a while and head for my car I start noticing my shortness if breath and I have to stop. Same when walking halls where I volunteer. If I am slow about stopping (like crossing a street) I feel like I am locking up and then I have to sit down.

      As to other comments, titration seems to cause me problems but it is getting better. I had to slow down on Remodulin. Does anyone have some really positive effects from Reodulin? I’m looking for encouragement.

      Best

      • #15715
        Brittany Foster
        Keymaster

        Randolph,
        any type of stopping and going bothers me too. I feel like it takes longer for my blood and circulation to shift to a standing position from a sitting position, even stopping and standing for awhile and then walking again is difficult for me and my shortness of breath. I usually put my oxygen up when I know that this is going to happen and I try to avoid places where I know there will be a lot of sitting to standing (for example, church used to be difficult for me to attend before I was put on oxygen because of the sitting and standing involved throughout the mass).

        I will put the question about Remodulin out on the forums under the forum “treatment of PH” and can tag you in the post so you can see other’s answers about it!

    • #15717
      Randolph Reynolds
      Participant

      Oops went off line. As I was going to say that my biggest question is when will this treatment reach a point when I am feeling better? When ever faced with challenges like steps, long walking, getting up to quickly from bed my anxiety level goes up and then my shortness of breath is rather pronounced.
      I was put on diuretics (Furosemide and Spironolactone) to reduce the swelling in my feet and control my water weight gain
      but there were additional issues with diarrhea and that so of stuff. I feel as if I am in a cage running around looking for a way out. Perhaps we all feel that way?

      Thanks Brittany. My Inogen helps but I find it doesn’t prevent shortness of breath if I push too hard.

      • #15730
        Brittany Foster
        Keymaster

        Hi Randolph,
        I can definitely understand the frustration with the titration process and I wish that was easier for you. I always try to encourage everyone to bring up these symptoms to the doctors too and see if they have any suggestions. If pushing your body seems to trigger things right now and makes your shortness of breath worse than try your best to be easy on yourself and do what you can handle with rests in between. As an active person, the worst thing to hear is “get rest” but it does help. I’ve learned to find things I enioy doing while resting that also makes me feel like I’m doing something and not just sitting around. That has been something that has helped me to slow down and allow my body to recover.

    • #16048
      Barbara Malcom
      Participant

      I have COPD and PH. They diagnosed my PH about 7 years ago but my cardiologist has never treated it. I am really having problems with breathing. What do you take for COPD and PH? Thank you for anyone that will respond

    • #16054
      Bill
      Participant

      Barbara,
      Please see a pulmonologist ASAP, preferably one specializing in PH. Where do you live? There are some top-notch pulmonary departments in some bigger-city hospitals. Also know that there are many meds available to treat this disease and to increase the quality of your life!

      • #16062
        Brittany Foster
        Keymaster

        You’re right about the medication Bill. There is a medication and a treatment for everyone. The biggest thing is trying at least to get to what is causing the PH and then developing the treatment from there. But looking into a PH specialist I’m sure would be helpful!

    • #16055
      Barbara Malcom
      Participant

      Bill, thank you for your concern. My pulmonologist says my cardiologist is the one to treat it. It’s time for my cardiologist checkup next month. I am going to see why he never treated my PH. When was yours found? Early on or later. What did they start doing for you?

      • #16063
        Brittany Foster
        Keymaster

        I’m glad you are going to see a cardiologist Barbara. You can even ask them if they think that seeing a PH specialist would also be beneficial for you! I also see a cardiologist, regular pulmonologist, EP doctor for my a-fib and pacemaker as well as a PH specialist. It’s good when they can refer you to someone so there’s good continuity of care.

    • #16056
      Barbara Malcom
      Participant

      Brittany and Randolph, do you both have COPD and PH?

      • #16061
        Brittany Foster
        Keymaster

        Hi Barbara,
        I don’t have COPD and PH. My PH was caused by a condition called central hypoventilation syndrome so essentially I have restrictive lungs and a reduced lung capacity because I don’t ventilate well enough. Think of sleep apnea but having it ALL day ! My body is used to it at rest but with exertion and activity I am treated with oxygen for it and also use a bipap machine that has helped me a lot actually!

    • #16101
      Sherry Berry
      Participant

      I have shortness of breath all the time. I’m on O2 24/7 6 ltrs sitting, 8ltrs movement, and 10 ltrs exercising, in rehab I used a cannula on 10 ltrs and a rebreather mask on on 15 ltrs at the same time and I was good. I have to sleep elevated or I feel like I’m suffocating. I also sleep with a Bipap for nocturnal dyspnea. My pulse ox drops anytime I move. So if I’m in the hospital and the nurses aren’t familiar with me they run in every second. Just standing up I go from 88 down to 50 or 60s and it takes a few mins to recoup I have PH, CHF, PF, COPD, Pulmonary Hermosidsis, and Cryptogenic Organizing Pneumonia. So I’m pretty familiar with shortness of breath.

      • #16115
        Brittany Foster
        Keymaster

        Wow Sherry,
        You certainly must give those nurses and the care team a run for their money with all that you have going on! I am the same way with movement my oxygen levels decrease pretty rapidly and then recover once I’m sitting down. After the heart surgery that is upcoming for me (date I am waiting on) I will go to pulmonary and cardiac rehab and it would be interesting to learn exactly what level of oxygen I need to be at with different levels of activity. I have been so “used to” a lower level of oxygen but I know the symptoms of when it gets just too low and I need to use my oxygen more and rest. You become way more aware of the changes in your own body when having an illness like this which can be a good thing but a scary thing at the same time.

    • #16102
      Sherry Berry
      Participant

      I see both a regular cardiologist and a critical cardiologist who specializes in Pulmonary Hypertension. I also see a Pulmonologist specializing in Critical Diseases. I am on 10 medications. I was started on silendafil last year but I kept passing out and having severe headaches, so they took me off of it and are afraid to try anything else because my blood pressure has always been low. So they are just basically prolonging my life at this point. I was misdiagnosed for 10 years. I’m just tired.

      • #16116
        Brittany Foster
        Keymaster

        I can’t even imagine how tired you must be, Sherry. It must be a workout in itself to keep up with all the appointments and treatments and medications that you’re currently taking. Self care and managing an illness is truly a full time job that takes a lot of time and energy away from us. I hope that you are able to get some rest and relaxation throughout your day (even though I know rest isn’t always the answer because it is more of a whole body fatigue– I get it)!

    • #18272
      Brittney Christy
      Participant

      The health problems are critical no matter whichever it is, but it need to be treated to live happy life. There are many health insurance plans available to take which helps in the coverage of the medical expenses. The various plans are Medigap plan G, AARP Medicare supplement plan G, Mutual of Omaha health insurance and other. These can be taken from The Health Exchange Agency at affordable prices.

    • #17877
      Brittney Christy
      Participant

      Survive with any health problem is hard. The better way is to take the proper doctor advice and treatment for a particular problem to live happy. There are different health plans which help seniors pay for the medical expenses. The plans are AARP Medicare supplement plan G, Medigap plan G, Mutual of Omaha Medicare supplement, Mutual of Omaha Medicare supplement plan F rates and more.

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