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Pulmonary Hypertension caused by Sleep Apnea

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by 2Cor.12:9, May 2, 2018.

  1. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Hello friends. I originally posted about this here http://forums.phoenixrising.me/index.php?threads/pulmonary-hypertension-hypoxia-rhinitis.58582/ , but since I'm not able to edit that post I'll update it here.

    So, after 32 yrs living with moderate to severe ME/CFS, my new pulmonologist was baffled as to why no one had ever ordered a sleep study. I certainly never thought I needed one, and I doubt I would ever have been ordered one except that an echocardiogram revealed pulmonary hypertension - which is a very serious issue.

    There are two categories of PH - primary and secondary. The former is a serious disease known as PAH. The latter can be caused by many different diseases including heart disease, connective tissue disease, cancer, obesity, and sleep apnea. To find out what was causing my PH we had to start ticking off all the boxes by going to various specialists, having a boatload of tests, and a CT chest scan. We know think the culprit may turn out to be sleep apnea. Time and treatment will tell for sure.

    A home sleep study using the Alice NightOne was ordered. Because I had bronchitis, I was only able to sleep about 3 hrs, and had trouble with the connection warning lights coming on. I was just sure the test would have to be repeated. But this clever little workhorse recorded both obstructive and central sleep apnea events as well as hypoponeas. I had stopped breathing 12 times pr hour (which is considered mild).

    I'll be fitted for a mask and will get an APAP machine soon. They will have me download the info daily from an SD card into a program so we can follow the progress together and make adjustments if necessary. I'm hoping this will solve the PH mystery and will improve my energy, heart palps, and brain fog.

    The pulmonologist mentioned that CPAP can sometimes worsen central sleep apneas but since mine is predominantly OSA, we're keeping fingers crossed that won't happen.

    As for the impact this could have on my ME/CFS, I've learned not to get my hopes up too high when starting a new treatment. But I will be thankful for any improvement at all. Most of all, I'm glad to have made this discovery because sleep apnea can also lead to heart disease, stroke and other serious conditions.

    As much as I've learned about ME/CFS over the years it boggles my mind that this common problem was so overlooked. I guess that's the nature of SA though - I "thought" I was sleeping just fine.

    I could use some encouragement about this APAP treatment and would love to hear any success stories.

    Cheers,
    Diane
     
    Last edited: May 2, 2018
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  2. bjl218

    bjl218 Brian Levine

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    I'm not sure whether a full face mask or something like a nasal pillow mask was recommended for you. I use a nasal pillow and found that the additional pressure actually helped to open my nasal passages to help me breathe easier.
     
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  3. Runner5

    Runner5 Senior Member

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    PNW
    My husband had a lot of fatigue and apnea was the cause, he felt so much better on his CPAP, glad you got that figured out! I hope it helps your heart and energy level!
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I followed your other thread @2Cor.12:9 re: pulmonary hypertension and I am glad that your doctors are closer to figuring it all out. Best wishes with the APAP (or CPAP) or whichever one is decided to be the right fit for your case.
     
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  5. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Thank you - that's good to know. I haven't been fitted yet and was planning to ask if the nasal pillow would work for me.
     
  6. 2Cor.12:9

    2Cor.12:9 Senior Member

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    That's sure encouraging! Thank you!
     
  7. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Thanks @Gingergrrl :)
     
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  8. bjl218

    bjl218 Brian Levine

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    If you have any questions about CPAP or masks, please feel free to ask. I've been trying out various solutions for years now (including a dental appliance) so I've been through it...
     
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  9. 2Cor.12:9

    2Cor.12:9 Senior Member

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    UPDATE: Well folks, I'm 6 weeks in with the CPAP machine and all I can say is WOW!!!!!

    No, my ME/CFS hasn't magically been cured. But YES, my brain fog has vanished! It's like I've been semi-comatose for.ev.er. I can think clearly and can read and write again. My legs don't vibrate in the night. Heart palps are almost gone. No headache in the morning.

    It has improved my overall stamina and helped to a degree with the fatigue ( but I'll take anything, thank you! :) I even found myself sprinting briefly down the hall the other day and wondered...whaaaat?

    They say it takes a good 3 months or more, so I'm hoping it will improve even more. I'll get another Echo next month and am keeping my fingers crossed that this was the cause of the
    pulmonary hypertension.

    The machine is quiet - we couldn't handle the noisy oxygen concentrator, but this thing's just fine.

    The first pillow mask didn't work, but I've got the full face now. Took about a week or two to get used to it. Now it's my new best friend.


    @TiredBill
     
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  10. bjl218

    bjl218 Brian Levine

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    That's such excellent news! Amazing what good night's sleep can do for you. I use a nasal pillow myself and I can see how some people might have trouble with it. However, I'm a side-sleeper and I was never able to use a full face mask because of that. There are many different nasal pillow models out there. So if you ever get tired of your full face mask, you might want to try one of them.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    This is great news @2Cor.12:9 and I am really happy for you!
     
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  12. TiredBill

    TiredBill Senior Member

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    Marvelous news @2Cor.12:9.

    Thanks for tagging me!

    Interested in hearing about your progress. What sort of AHI numbers are you seeing?

    Bill
     
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  13. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Sorry @TiredBill I just saw this. My numbers range anywhere from .04 - 2.10 - but usually around 1 ish. I have a mix of centrals and ob that seesaw. My pulmonologist is happy.

    I had my echo follow-up and the pulmonary hypertension is still there - but the dr isn't worried about it. He said it's very mild and that a lot of people have mild PM. - all that worrying for nothin'! Well, at least it inspired me to lose weight. ha!

    Wish I could say my CFS magically disappeared. But at least I'm feeling so much better all around. And my energy is improved.

    Interestingly, my POTS is more noticeable now. Maybe it's due to the fact that I'm feeling better so when I stand up I notice it more.
     
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