Anyone else out there with a sleep disorder?

Are you here for weight loss, gain, fitness, another reason? How is it going?
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Replies

  • AnnPT77
    AnnPT77 Posts: 31,717 Member
    Just obstructive sleep apnea (treated) and sleep interruption insomnia (completely unexplained, mostly untreatable - but hypnotherapy helped the most). I'm fine, coping . . . in year 18 of this.

    Here initially for weight loss, now maintenance. No notable effect of sleep nonsense on that, AFAIK.
  • lalalacroix
    lalalacroix Posts: 834 Member
    Yup. 25 years of chronic insomnia. Some of my methods to cope work some nights, and sometimes they don't. I've been here since 2014 for weight loss. Still struggling with that. The nights I have with 4 or less hours of sleep tend to make me ravenous the next day.
  • kds10
    kds10 Posts: 450 Member
    Mainly waking up too early regardless of when I go to bed...this upcoming time change not good for me..i often wake up between 5 and 5:30 even on weekend so now it will be between 4 and 4:30.
  • Safari_Gal
    Safari_Gal Posts: 888 Member
    Yes, off and on night terrors. It’s been years. They are horrible.

    I came to MFP - for weight loss, overall fitness and to make a major effort to focus on and eat a nutrient dense, plant based diet. I’ve been limiting alcohol and need to be better about caffeine.

    I’ve noticed the more on point my diet and exercise is- the better my sleep is. Though as you all know from having problems sleeping - getting a permanent fix is quite elusive!
  • amandaeve
    amandaeve Posts: 723 Member
    @AnnPT77 Way to stick to it! Sounds like you are doing great.

    @lalalacroix Agreed! The feeling of 'tired' makes me want to eat more than the feeling of 'hungry', which seems so wrong.

    @kds10 that's funny, waking up religiously at 5:20 every morning is part of my sleep hygiene plan. I'd love it if I did that naturally vs. forcefully!

    @mg07030 I am in sort of the same place, each thing affects the other, and sometimes I'm more successful than others.

    I've been feeling kind of alone lately. I was diagnosed with idiopathic hypersomnia in a different state than where I live now (although in the same health care system). My current doctors don't seem to acknowledge the issue. It's not a big deal, they aren't denying me my meds, but it's weird. Whatever dr. Will ask me a series of questions, and sometimes I'll answer, "yes, but that's explained by the hypersomnia" and they don't comment back or record it in my chart notes. Instead they'll write things like, "falls asleep in 5 minutes, but reports testing negative for sleep apnea." It's just weird.

    Rigid sleep hygiene helps me the most. I'm doing pretty good overall, a lot of people struggle with eating well and exercising enough, so I have no reason to worry. Sometimes I wonder if it would be easier or if I'd go farther if I didn't feel so tired all the time.
  • kshama2001
    kshama2001 Posts: 27,843 Member
    I got by with regular exercise, rigid sleep hygiene, and sublingual melatonin plus separate 5-HTP for years, but now that I am peri-menopausal need more, which is fortunately an available option in my state, and that's all I can say about it here.
  • avskk
    avskk Posts: 1,789 Member
    Idiopathic triple-phase insomnia over here. I'm on MFP working on correcting a lifetime of severely disordered eating, learning how to maintain a stable weight and eat normally. Someday I may return to weight loss, but for now just being normalsauce is a big enough challenge. Not gonna lie, the constant exhaustion makes it infinitely harder. It's so, so easy to turn to food as a source of comfort, energy, etc. when you don't have the refuge of good sleep.
  • mom23mangos
    mom23mangos Posts: 3,070 Member
    edited November 2018
    My son that introduced me to MFP has Type 2 narcolepsy + sleep apnea, so very similar to idiopathic hypersomnia @amandaeve. He joined to lose weight, but hasn't been too active on here lately. It's the depression that gets him more than the sleep disorder. I probably have mild hypersomnia myself. I just have to try to get an average of 8-10hrs of sleep a day. Sometimes I close my office door and take a quick 15-30min catnap if necessary.

    My son just started taking Xyrem and it seems to be helping. We went to a narcolepsy conference a few weeks ago and it's life changing for some people(xyrem, that is). We are lucky in that we live in a major city and my son's neurologist is one of the leading sleep disorder doctors.

    When we were at the conference we went to a very interesting seminar from a lady that has done a lot of research into diet and lifestyle changes that can really help. Check out her website and FB.

    http://madcapnarcolepsy.com/
    https://www.facebook.com/pg/madcapnarcolepsy/posts/
  • ssbbg
    ssbbg Posts: 153 Member
    kshama2001 wrote: »
    I got by with regular exercise, rigid sleep hygiene, and sublingual melatonin plus separate 5-HTP for years, but now that I am peri-menopausal need more, which is fortunately an available option in my state, and that's all I can say about it here.

    How do you know 5-htp is working? I started taking it for sleep issues also and I'm not noticing a difference. Maybe it is really subtle or takes longer to build up? Did you see a noticeable difference? I'm almost done with my first bottle and I'm debating if I want to spend the money on another bottle.

  • amandaeve
    amandaeve Posts: 723 Member
    My son that introduced me to MFP has Type 2 narcolepsy + sleep apnea, so very similar to idiopathic hypersomnia @amandaeve. He joined to lose weight, but hasn't been too active on here lately. It's the depression that gets him more than the sleep disorder. I probably have mild hypersomnia myself. I just have to try to get an average of 8-10hrs of sleep a day. Sometimes I close my office door and take a quick 15-30min catnap if necessary.

    My son just started taking Xyrem and it seems to be helping. We went to a narcolepsy conference a few weeks ago and it's life changing for some people(xyrem, that is). We are lucky in that we live in a major city and my son's neurologist is one of the leading sleep disorder doctors.

    When we were at the conference we went to a very interesting seminar from a lady that has done a lot of research into diet and lifestyle changes that can really help. Check out her website and FB.

    http://madcapnarcolepsy.com/
    https://www.facebook.com/pg/madcapnarcolepsy/posts/

    @mom23mangos thanks for the links. And thanks for noticing the similarities of type 2 narcolepsy and hypersomnia. They said if I had rapid-onset REM for one more nap, I would have been diagnosed with narcolepsy. Kind of makes me wonder if I would have a narcolepsy diagnosis if I had my sleep study on a different day, that's a pretty fine line.

    Is your son following this diet? Is it helping him? I ate a high protein diet (and consequently low carb) a while back and it was terrible. I was also lifting to increase muscle mass, so that may have contributed, but I felt aweful. My body felt extra sluggish, sore, and exhausted all the time. I switched back to a 40%+ carb ratio and feel much better. I get about 10 hours of cardio a week, so that might be part of it, too.

    I am intrigued by your blogger's mention of MCT. This isn't something I've looked into before. I read some articles from ConsumerLab and NIH. I couldn't find any studies related to wakefullness, but there did seem to be some evidence that MCTs do more than simple carbohydrates to improve performance in endurance activities- which intrigues me. There is a lot of evidence that medium chain triglycerides help you feel more full than other fats, which sounds awesome. However, the Heart Association still recommends no more than 13 grams of saturated fat a day, total. The general recommendation for MCT alone was about 85 grams a day. I went on heart medication long before I developed sleep issues, to there is a bit of a conflict of interest there. I need to find more research....
  • mom23mangos
    mom23mangos Posts: 3,070 Member
    @amandaeve, I wouldn't be too surprised if idiopathic hypersomnia and Narcolepsy type 2 get lumped together as the same disorder in the near future. You are very fortunate that you haven't have any issues getting treatment. I felt really bad at the conference when the Dr's were recommending people to not get a follow-up sleep study because if they failed to get the 3 rapid-onset REMS, then the insurance companies would stop paying for their meds. There's even talk about in the future insurance companies my start requiring a spinal tap before paying, even though there's only one lab in the country that tests for Orexin levels. Of course, when your medication costs $5k/month....

    He hasn't started the diet changes yet. He's eaten low carb in the past and said that he didn't really notice a difference, but I think it might be worth doing something like Whole 30 to see how he feels. I'd rather have him try dietary changes first before upping medication levels. She also has some interesting recommendations for electrolyte and vitamin supplementation. He does already incorporate a lot of her other lifestyle tricks like blue light filters on electronics, etc.

    I talked to him about trying the MCT as well, but we are trying to figure out the best way to get it down him since he doesn't drink coffee or tea.
  • jdubois5351
    jdubois5351 Posts: 460 Member
    I don't have a diagnosed sleeping disorder, and I've always been an excellent sleeper. During the last few years it's gotten progressively worse. My doctor tells me it's to do with pre-menopause, and it should get better once I've left that phase of my life behind me. Great, menopause (I haven't even truly started yet) can last ten years, and I'm not sure I can do this for the next ten years.

    Most nights I have trouble falling asleep. Melatonin helps sometimes. I've also tried CBD oil, but that didn't make any true difference, either. I also hardly ever sleep through the night, I usually wake up a couple of times (just talking about the times I actively remember being awake). I wear a Fitbit, and while I know the sleep data is not super accurate, it does confirm how I feel when I wake up. My rate of deep and dream sleep is extremely poor, usually it's just about 5% of my whole sleep cycle, meaning I never really rest, which explains why I'm always so very exhausted. Sometimes I take over the counter sleep aids, and while they do let me sleep, it's not restful, and I feel drowsy the next day. Ahhhh, I just want to sleep again like I did ten years ago. I don't even remember what it feels like to wake up rested and refreshed.
  • amy19355
    amy19355 Posts: 805 Member
    My GP sent me to a pulmonary specialist a few years back to have a lump checked (it was nothing to worry about) and that specialist sent me for a sleep study because I told him I was a snorer.

    The outcome of that sleep study was getting a CPAP machine and it made a huge difference in my life. THe sleep study showed my breathing stopped 30 times + an hour, and, that I was getting about 7 minutes of REM over the course of the night. (explains the no dreams for years).

    Now I dream regularly, and wake up automatically after about 8 hrs +/- of sleep; rarely need the alarm to help get me up in the morning.

    I think for anyone having a sleep problem, it is worth discussing with your doctor about getting a sleep study done.
  • amandaeve
    amandaeve Posts: 723 Member
    I don't have a diagnosed sleeping disorder, and I've always been an excellent sleeper. During the last few years it's gotten progressively worse. My doctor tells me it's to do with pre-menopause, and it should get better once I've left that phase of my life behind me. Great, menopause (I haven't even truly started yet) can last ten years, and I'm not sure I can do this for the next ten years.

    Most nights I have trouble falling asleep. Melatonin helps sometimes. I've also tried CBD oil, but that didn't make any true difference, either. I also hardly ever sleep through the night, I usually wake up a couple of times (just talking about the times I actively remember being awake). I wear a Fitbit, and while I know the sleep data is not super accurate, it does confirm how I feel when I wake up. My rate of deep and dream sleep is extremely poor, usually it's just about 5% of my whole sleep cycle, meaning I never really rest, which explains why I'm always so very exhausted. Sometimes I take over the counter sleep aids, and while they do let me sleep, it's not restful, and I feel drowsy the next day. Ahhhh, I just want to sleep again like I did ten years ago. I don't even remember what it feels like to wake up rested and refreshed.

    @jdubois5351 Isn't being a woman such a curse sometimes?!?! It was recommended I change birth control when I turned 40 to reduce cancer risk, and now I sweat (like, so bad I have to change my shirt a couple times a night) one week out of a month. My Drs. just shrug it off, "it's just hormones". And I'm no where near hot flash age yet. Arg!!!

    I have a fancy sleep tracker with sensors for heart rate, breathing, etc. Its daily educational messages tell me deep sleep drops with age, with a normal adult getting 20% to a normal elderly person getting 5%. I routinely get half the deep sleep as my bf who is only 5 years younger than me. I get about 10-15% deep sleep each night which is perfect for someone in their 40s (he still gets 20%). It does sound like you need to be getting more deep sleep. However, articles I've read say it's the amount of REM sleep that correlates with the feeling of rested for normal people. Deep sleep is restorative for health, but doesn't have much to do with how alert we feel.

    I've played around with trying to get more deep sleep. I haven't done it enough to totally confirm it, but I have a hunch "winding down" at night results in more deep sleep for me. I fall asleep in 5 minutes, so that isn't an issue, but it seems listening to soft music or Headspace, or taking a warm bath before bed helps me get more deep sleep that night.
  • amandaeve
    amandaeve Posts: 723 Member
    @mom23mangos Add the oil to salad? Stir fry? I think adding oil to any food I eat would make it taste better...except coffee or tea, and I love both. :neutral:
  • jdubois5351
    jdubois5351 Posts: 460 Member
    amandaeve wrote: »
    I don't have a diagnosed sleeping disorder, and I've always been an excellent sleeper. During the last few years it's gotten progressively worse. My doctor tells me it's to do with pre-menopause, and it should get better once I've left that phase of my life behind me. Great, menopause (I haven't even truly started yet) can last ten years, and I'm not sure I can do this for the next ten years.

    Most nights I have trouble falling asleep. Melatonin helps sometimes. I've also tried CBD oil, but that didn't make any true difference, either. I also hardly ever sleep through the night, I usually wake up a couple of times (just talking about the times I actively remember being awake). I wear a Fitbit, and while I know the sleep data is not super accurate, it does confirm how I feel when I wake up. My rate of deep and dream sleep is extremely poor, usually it's just about 5% of my whole sleep cycle, meaning I never really rest, which explains why I'm always so very exhausted. Sometimes I take over the counter sleep aids, and while they do let me sleep, it's not restful, and I feel drowsy the next day. Ahhhh, I just want to sleep again like I did ten years ago. I don't even remember what it feels like to wake up rested and refreshed.

    @jdubois5351 Isn't being a woman such a curse sometimes?!?! It was recommended I change birth control when I turned 40 to reduce cancer risk, and now I sweat (like, so bad I have to change my shirt a couple times a night) one week out of a month. My Drs. just shrug it off, "it's just hormones". And I'm no where near hot flash age yet. Arg!!!

    I have a fancy sleep tracker with sensors for heart rate, breathing, etc. Its daily educational messages tell me deep sleep drops with age, with a normal adult getting 20% to a normal elderly person getting 5%. I routinely get half the deep sleep as my bf who is only 5 years younger than me. I get about 10-15% deep sleep each night which is perfect for someone in their 40s (he still gets 20%). It does sound like you need to be getting more deep sleep. However, articles I've read say it's the amount of REM sleep that correlates with the feeling of rested for normal people. Deep sleep is restorative for health, but doesn't have much to do with how alert we feel.

    I've played around with trying to get more deep sleep. I haven't done it enough to totally confirm it, but I have a hunch "winding down" at night results in more deep sleep for me. I fall asleep in 5 minutes, so that isn't an issue, but it seems listening to soft music or Headspace, or taking a warm bath before bed helps me get more deep sleep that night.

    Yeah, I know about the REM sleep - that's were the mind rests, the deep sleep is more for the body to recover. Unfortunately, me REM sleep is even worse than my deep sleep.
  • amandaeve
    amandaeve Posts: 723 Member
    @jdubois Have you asked about getting a sleep study? It sounds like it's impacting you pretty badly.
  • AnnPT77
    AnnPT77 Posts: 31,717 Member
    edited November 2018
    I hope no one is believing his/her fitness tracker's sleep analysis, without authoritative (sleep study) confirmation!

    Research suggests they're unreliable. I know my (Garmin, so reasonably high quality) device produces errant nonsense. It's had me in REM when I've been awake in bed texting (timestamps to prove it), missed brief overnight waking periods, even shown me asleep during times I was awake and sittng in my living room.

    IMO, this is pure LOLdata.

    Edited: typo
  • amandaeve
    amandaeve Posts: 723 Member
    AnnPT77 wrote: »
    I hope no one is believing his/her fitness tracker's sleep analysis, without authoritative (sleep study) confirmation!

    Research suggests they're unreliable. I know my (Garmin, so reasonably high quality) device produces errant nonsense. It's had me in REM when I've been awake in bed texting (timestamps to prove it), missed brief overnight waking periods, even shown me asleep during times I was awake and sittng in my living room.

    IMO, this is pure LOLdata.

    Edited: typo

    I'm also assuming no one takes wearable data as anything other than confirmation or fun. My Garmin is also terrible, it's tracked me sleeping when doing jumping jacks, riding my bike, doing yoga, the list goes on. On top of that, the idea of using an accelerometer is flawed to begin with. We've all spent time sitting motionless and awake! Thank you for pointing that out though- you never know where people are coming from.
    My other device is pretty fun, though (I forget the name, it's glued to my mattress). It gives me a snippet of research every day and lets me gamify the data. If I do this, can I make this happen? I am way into the "quantified self" thing...I've been turning my whole life into data since I could walk.