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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
    Gingergrrl and Runner5 like this.
  2. bjl218

    bjl218 Brian Levine

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    Chelmsford, Massachusetts
    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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    Chelmsford, Massachusetts
    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...
     
    2Cor.12:9 likes this.

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