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This topic contains 22 replies, has 10 voices, and was last updated by  Colleen Steele 5 months, 2 weeks ago.

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  • #15838
     Libby 
    Participant

    Does anyone else feel like they need a lot of sleep in order to not feel energy-less or fatigued the next day? I have always slept a lot and my family makes fun of me for it but I seriously feel so tired and cranky if I don’t sleep for at least 10 hours! I can easily sleep 12 hours everyday if my work permits. My doctor doesn’t seem to think it’s related to my PAH since I’m still considered mild at the moment but Ive always wondered…

  • #15841
     Brittany Foster 
    Keymaster

    I could sleeo FOREVER lol but I also have that overwhelming part of me that makes sure I get up and start moving as soon as the day starts. If I stay in bed too much I just feel pretty depressed. I’m only in bed a lot if I’m not feeling well or sick. Have you ever been checked for sleep apnea? My bipap therapy helped a lot with it.

  • #15843
     Libby 
    Participant

    That is so weird! I feel really depressed if I sit in bed as well. I mean REALLY depressed, and I’ll pick fights with my husband. lol! I always thought sleep apnea was something where you couldn’t sleep or had breathing problems during it? I guess I need to do some research on it. I sleep deeply at night, it isn’t like I’m tired because I get restless sleep.

    • #15857
       Brittany Foster 
      Keymaster

      Hi Libby.
      Yes definitely bring this up with the doctors too. For me, sleep apnea is caused by both obstructive causes related to the positioning of my aorta (which hopefully will be getting fixed soon!) and then I have central apnea which means that the brain doesn’t send signals to my body to breathe. So I use the bipap/non-invasive vent. I would suggest asking about a sleep study. it also can evaluate how long you’re in each cycle of sleep for.

  • #15861
     Kimberly 
    Participant

    Oh my goodness. I’m glad to know I am not alone in this. I am asleep every night by 10pm awake at 8am. That’s a solid 10 hr night. Then I have to take a nap from 2pm until 3:30pm. If I don’t take that nap I start to feel nauseous. Does anyone else ever feel so tired it makes you nauseous?

    • #15863
       Brittany Foster 
      Keymaster

      Hi Kimberly,
      I have been so tired to the point where I feel very lethargic and out of it but I can’t say I’ve felt the nauseous feeling. Do you ever take anything for nausea? Are there specific medications that help you with this or do you just let the feeling pass by resting it off?

  • #15862
     Margie Novak 
    Participant

    Oh my goodness. It is like you were reading my mind I was just in my kitchen thinking I could go to be right now (and it is only 7:00). There are some days I can do things and not get tired but then (like today) I just want to sleep and I thought…. is this normal for people with PH. My brother-in-law will say “well you sleep till 10:00 this morning” and I am like I have an illness. Some nights I cannot really fall asleep so I have to sleep when I can. I don’t stay in bed like a depression symptom but I am just tired. Body is exhausted and then after I eat — forget it… I really want to go to bed. So I would have to say yes, it is normal to be tired with PH. Get under that comforter and sleep!!!! take care evweryone

    • #15864
       Brittany Foster 
      Keymaster

      Margie,
      You’re so right ! Listen to your body and all that it is trying to tell you. Sleep is so important to heal. I feel like our bodies try to heal themselves every single second of every day. Thinking about working out a muscle for the entire day and going home to rest and ice it. That’s what we NEED for our whole body not just one muscle !

  • #15884
     Randolph Reynolds 
    Participant

    Since I have PAH and have been heavy medication I will sleep about two hours, get up for the bathroom then take a site pain killer that gets me further along in sleep. The problem with these medications is that they tend to make me sleepy later in the day. Sleep aids are fair but back and site pain force me to sleep much more.

    • #15887
       Brittany Foster 
      Keymaster

      Hi Randolph,
      I get what you are saying. Medications with sometimes make people with PH very tired (on top of the usual tiredness). Sleep medication actually works during the nighttime for me but also gives me a “hangover” feeling. Reminds me that I’m now lucky I can’t drink as much as I used to in college. When I have to take pain medication for my severe pain sometimes it puts me right to sleep. It depends on the kind that I take though. Percocet usually makes me nauseous and tired but vicodin makes me more hyper/talkative instead of tired. They effect people so differently for sure.

  • #15946
     Julia Tom 
    Participant

    Take me in. I have been in this situation for couple of days

    • #15957
       Brittany Foster 
      Keymaster

      So sorry to hear this Julia. Are you/ have you been given any medication when it gets bad like this? I know that medication isn’t always the answer for some especially with the combination of other medical therapies, but when mine is really bad it’s better to sleep vs staying up all night!

  • #15948
     Kimberly 
    Participant

    Brittany, I normally try to sleep the nausea away but sometimes it gets really bad so I take zofran which is an anti nausea med

    • #15958
       Brittany Foster 
      Keymaster

      Hi Kimberly,
      I totally WISH my body was able to tolerate anti nausea medications. Unfortunately I have a sensitivity to them where my brain feels like it’s being zapped and I have tried SO MANY!! it’s like I have ants on my body and my skin literally crawls. I think it must have something to do with the receptors of the brain that these medications work on!

  • #16751
     Charles Nester 
    Participant

    Hi Libby,
    I think I slept a lot, I feel very nervous after sleeping a very long time. But now I feel perfect and when I was trying to sleep 6-7 hours. So I recommended all don’t slept more then 7 hours to live a healthy life.

    • #16752
       Brittany Foster 
      Keymaster

      Hey Charles,
      I sleep a lot more depending on how I’m feeling too and try to listen to my body when I know it needs rest. Lately, I have needed more rest especially with a surgery coming up in a few weeks. It takes a lot for the body to heal from anything, even just a common cold can leave me feeling like I could sleep for a whole week!

      • #17408
         Charles Nester 
        Participant

        Hey, Brittany, I am always trying to sleep six to seven hours per day and want to lead a healthy life. But in my present days, I went to sleep at 10 pm and waked up at 9 am. But when I am working on the day, I couldn’t still stand and work well. I feel that I become so tired and need a rest, and when I go to take a rest, I have fallen in a depth sleep at the time of day. I don’t know what happened with just feeling so tired.

      • #17410
         Brittany Foster 
        Keymaster

        I’m sorry this tiredness is going on, Charles. I completely understand that level of being so tired and fatigued. It can be very unsettling to feel like you need tons of sleep just to be able to barely function. I know that personally, nutrition, how I’m feeling physically, if my body is trying to fight off an infection or illness, if my levels such as potassium or iron are low, etc can effect my sleep. Have you ever been given a sleep study? Before mine they checked my levels in my blood too just to make sure there wasn’t anything else contributing to me feeling this way ! I hope this gets figured out for you soon. Fatigue is awful.

  • #16790
     Cindy Bee 
    Participant

    I have always loved to sleep. But I do feel like extra sleep is necessary to feeling less fatigued. I have just got use to friends making comments like “Is that on Cindy’s morning or regular people’s mornings”. I always reply “What is regular morning time?”.

    • #16794
       Brittany Foster 
      Keymaster

      Hey Cindy,
      I totally understand!!! For me, I would much rather go to bed early (like around 8ish) and wake up earlier in the morning. Lately my schedule has been all mixed up because of discomfort so I’m going to bed later and waking up later which my body is jusy NOT used to.

  • #17419

    Well this is a topic near and dear to my heart, no pun intended. I have both central and obstructive apneas and in my case I have them both in the severe category. My Dr. does not want me using sleep meds or pain meds because they make my heart slow down too much. Plus I do not need anything to make me slower or more groggy. I can literally fall asleep anywhere as I have mild narcolepsy from exhaustion and my illnesses. I have both PAH and CTEPH and mine went undiagnosed for at least 5 to 7 years maybe longer. Two years ago I was sleeping maybe 2 hours a day. Naps did not help and I was a walking zombie. In August of 2017 I slept maybe 10 hours that whole month. I was in CHF and nearly died. That was when I went to hospital and they diagnosed me with PAH. Then two months after that I went back to hospital and they found blood clots in my lung. I am doing better with meds and such (adempas and opsumit) but now after a year of treatment new things are popping up. I absolutely am fatigued by my CPAP machine and really dont use it. I know its bad but It was giving me terrible anxiety. I am now no longer trying to force myself to maintain a normal sleep schedule and I am taking sleep however and when ever it comes. This has been a good call because I am happier, sleeping just enough to survive and not as cranky and I was. I know now I need to retest for the ASV machine which is the last chance before I would have to have so crazy breathing device for sleep maybe even a trachea, which I abore.

    • #17425
       Brittany Foster 
      Keymaster

      Wow Christopher,
      It seems like you are going through and have gone through so much with your sleeping patterns. I can see why this topic of coversation gets you wanting to speak up about it. Thank you for sharing all of that with the group and for opening up about your struggles. I had to switch from a bipap to a machine that was more of an ASV setting which worked out a lot better for me and i really started to see a big difference. I personally struggled a lot with feelings of anxiety and feeling like I was being trapped by the machine. My advice would be to be honest and open with your care team regarding your limitations around using the therapy. I know my doctors found it helpful when I opened up to them about feeling anxious about using my equipment and sleep therapy. They were able to advise me about things that could help with this.

  • #17431
     Colleen Steele 
    Keymaster

    Christopher, you have been on long journey and it’s no wonder that your sleep pattern has been greatly effected. I thought the 2 years my son went misdiagnosed was bad but your ordeal of 5 to 7 years is a long time! It sounds like you are doing a good job listening to your body and allowing yourself the amount of sleep that works best for you. I think one of many struggles my son experienced was accepting that because of his PH, he did not fit into the “norm” on many levels. Sleep was always one of those areas that he felt like he had to defend to both his friends and sometimes his doctors, until like you his response developed into, “I do what I need to do to keep myself well.” He frequently faced this during hospital stays when the staff would question why he was wide awake in the middle of the night but sound asleep and unwilling to wake for rounds in the morning. Like it or not, it just seemed to be the sleep pattern that worked well for him. He had to adjust his life to it but what he found was that it made him less stressed and fatigued. I wish you well and I hope you figure out what is best for you equipment wise.

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