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    • #17285
      Colleen Steele

      I recently heard of a patient who has been diagnosed with both PH and Narcolepsy. Considering the symptom similarities between the two diseases I can imagine it would create challenges in managing and evaluating the health of the patient. If you are battling both PH and Narcolepsy, how has the one effected the other? How do you differentiate between them so that you and your doctor can best evaluate how you are doing? I invite you to share your experience.

    • #17312

      I have both PAH, CTEPH and Narcolepsy. Before treatment (opsumit, adempas) I was very bad. Falling asleep many times daily. Now it’s just a few times a day. One doesn’t effect the other as much as they both work together and against each other. I also have severe apneas both Central and Obstructive. I have so many issues and they all co-mingle so to speak. One kinda makes the other more or less prevalent. I wish I had stabilized success with my Auto-BiPap. When I had 6 months of continued good sleep my whole life changed. Now it seems I am struggling with both sleep and energy again. I seem to be more cranky and less alert until I choose to either go back to sleep or fight through my foggy rather groggy nature. I am very lucky that my Pulmonary Doctor is also my Sleep Doctor.

      Sleep when I can get true restful sleep is such a game changer that I can not say enough of it’s benefits. I almost can say that sleep is worth more to me now than nearly every thing.

      • #17323
        Jen Cueva

        Wow, Christopher, you have a full plate, to say the least ! I’m so sorry you’re having these issues as I know for myself, I need as much “ beauty rest “ as I can get most days. I can’t even begin to imagine how you function, my grogginess is definitely not close to what you experience, I’m sure!

        It sounds like you have a well experienced doctor who can help you in PH as well as with the Narcolepsy. I wish I had suggestions or answers for you , but I can offer comfort and please don’t hesitate to reach out here in the forums, anytime,

        Until then , hoping you can find some type of relief .

    • #17314
      Colleen Steele

      I am so sorry Christopher that you have so much battling against your sleep! When I learned of a pediatric patient who has PH and Narcolepsy my thought was, “That must really be challenging!” PH is complicated enough but more often than not, patients are battling something else on top of it. It’s not an easy road and my thoughts are with you. What is in your favor is that it sounds like you have a good doctor that you trust, that makes all the difference. Has he discussed any new options to try and help improve your quality of rest?

      Certainly don’t feel guilty about the lack of sleep effecting your mood. I can only imagine how it would! Please keep us updated on how you are doing and thank you for sharing your experience. We are here to listen and support you any time you need to discuss what you are going through. I hope things improve for you soon!

    • #17318
      Jimi Mcintosh

      I battled Narcolepsy for years before being diagnosed with PH, never connected the two. None of my doctors have mentioned a connection. Now, I battle go get more than 4 hours sleep.
      My CPAP set at 13 with oxygen, no longer helps. Thanks for the info

      • #17324
        Jen Cueva

        Ohh JImi, I’m sorry you’re not getting much sleep even with the CPAP. That just be frustrating to say the least !

        I don’t have Narcolepsy, but cannot imagine that on top of PH and everything else . Colleen offers some good suggestions as in my bedroom we do use the black out curtains.

        @colleensteele, it breaks my heart that a pediatric PH kid has Narcolepsy, how awful !

        Hope y’all both can get relief, guys!

    • #17322
      Colleen Steele

      Jimi, I’m sorry that you too are struggling to get a decent night of sleep. I know sleep deprivation was at the top of the issue pile for my son as his PH progressed and he needed more oxygen. I wish I had some wise advice on how to deal with it but I don’t remember us finding any easy answers.

      Have either of you tried black out curtains in your room? I put them in my son’s room because he needs total darkness when he gets a severe migraine, but he uses them even on pain free nights because I think it helps him fall asleep. The only thing is they won’t allow any breeze through the window and if you have an HOC in the room too it’s going to get that much hotter.

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