Anyone else out there with a sleep disorder?
amandaeve
Posts: 723 Member
Are you here for weight loss, gain, fitness, another reason? How is it going?
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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.2 -
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.4
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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 4:30.0
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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!
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@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.2 -
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.1
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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.2
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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/
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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.
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mom23mangos wrote: »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....0 -
@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.1 -
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.3 -
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.2 -
jdubois5351 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.0 -
@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.
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jdubois5351 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.
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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: typo2 -
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.3 -
2 weeks ago my 21 year old nephew died in his sleep and the coroner listed sleep apnea as the major contributor.
He was over 400 pounds.
No insurance so no CPAP.
His roommate noticed he was not snoring and checked on him, he was dead.
I have sleep apnea and I don't even take a nap without my CPAP.
I have a very hard time falling asleep and staying asleep.
Most nights I am still awake after 2 or 3 hours after going to bed.
Then I wake up a few hours later and that's it for the night.
All you women with sleep problems due to menopause have my sympathy.
My wife is having the same issue.10 -
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.
As I've said before, I know the data from Fitness trackers is not totally reliable, but my Fitbit has never tracked any nonsense. It only tracks sleep when I really sleep, I've never had any nonsense tracking during the day. In the morning, the data pretty much confirms what I'm feeling anyways, as in, I know what the data will show me by how I feel, and it confirms it, 95% of the time. But yes, I will ask my doctor about a professional sleep study.
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2 weeks ago my 21 year old nephew died in his sleep and the coroner listed sleep apnea as the major contributor.
He was over 400 pounds.
No insurance so no CPAP.
His roommate noticed he was not snoring and checked on him, he was dead.
I have sleep apnea and I don't even take a nap without my CPAP.
I have a very hard time falling asleep and staying asleep.
Most nights I am still awake after 2 or 3 hours after going to bed.
Then I wake up a few hours later and that's it for the night.
All you women with sleep problems due to menopause have my sympathy.
My wife is having the same issue.
@ACDodd I am so sorry for your loss. Your nephew had an unnecessary, preventable death. My heart aches. Do you live in the US? I am advocating for a basic health care system and your tragedy is another example of why we need to do better. Best wishes to you, your family, and your nephew's roommate and friends.4 -
I’ve had problem sleeping for many, many years. I take Ambien regularly. I’ve tried many times to get off it using melatonin, 5HTP, tryptophan, Valerian root, sleepytime tea. Nothing really works. Maintaining a regular schedule helps, no eating a few hours before bed helps, limiting liquids after 7 helps, no tv or iPad after 8 helps, keeping the room really dark and quiet helps. Recently I got a weighted blanket which also helps, but takes some getting used to.2
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I had sleep problems for years but it was because of my weight. I was on the sleeping pill merry-go-round for a few years, had sleep studies, saw several ENTs who diagnosed Sleep Apnea (mild). Tried every over the counter med available. My doctor prescribed Ambien but had horrible nightmares. Switched to Lunesta, it worked for awhile but then had to add trazadone or I couldn't sleep. Used a CPAP along with the meds but the CPAP didn't help at all. The insomnia was so bad for awhile I couldn't function, especially working 40+ hours a week as I'd be up all night, work all day, and come home exhaused.
With the meds, I often felt drowsy/hungover the next morning along with some other side effects; decided to wean myself off everything. Lost 50lbs, got active, no more snoring, no CPAP, no ENTs because sleep, blessed sleep returned. Now averaging 6.5 to 7 hours sleep every single night since I've lost the weight (15 months to lose and 4 years maintenance). I'm older (69) so 6.5 to 7 hours isn't too bad (occasionally I even get 8-8.5 hours).
Sleep apnea appears to run in my family. My younger sister also has it but was never overweight and we believe my father suffered from it (undiagnosed) for the last 20 years of his life. His snoring was earth shattering.
I also use a Fitbit and like @jdubois5351 I've found it to be fairly accurate; not perfect, but no nonsense data and the data I see correlates with my own, admittedly, not very scientific anecdotal data.
@ACDodd so sorry for your loss.
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I’ve had problem sleeping for many, many years. I take Ambien regularly. I’ve tried many times to get off it using melatonin, 5HTP, tryptophan, Valerian root, sleepytime tea. Nothing really works. Maintaining a regular schedule helps, no eating a few hours before bed helps, limiting liquids after 7 helps, no tv or iPad after 8 helps, keeping the room really dark and quiet helps. Recently I got a weighted blanket which also helps, but takes some getting used to.
My son and I made 25lb weighted blankets recently. I wasn't planning on sleeping with mine, more using it while lounging, but I tried it sleeping the first night and I've never slept so good. I use it every night now. I love it so much.2 -
I have really bad insomnia. I'm on 15 mg zopliclone. It doesn't help much anymore but I can't sleep at all without it.2
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Our son has terrible insomnia. He's only 16 so we're really reluctant to go the medication route, but thanks to this thread we just ordered a weighted blanket. He does suffer from anxiety.4
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My sleep apnea improved with weight loss, but didn't go away. I've been in a dispute with the sleep clinic people about pressure-prescription changes (insurance company won't spring for new study without CPAP management review, CPAP management people inaccurately wrote up results - long story).
Back when I was originally diagnosed with OSA, shortly after cancer/chemo treatments, I was being seen for sleep interruption insomnia. I go to sleep quickly, but wake up repeatedly and fairly often - at that point, about every hour and a half all night, but I go back to sleep very quickly. The CPAP made each hour and a half's sleep more sound, but I still woke up. Every drug tried still left me waking up at the same intervals, but really groggy during the waking. Not helpful.
I tried every folk remedy I could find, and many herbal/OTC ones. Not useful. The biggest help was hypnotherapy (from a trained psychologist). I didn't expect it to work at all, but it had been 2+ years of that nonsense, and I was desperate. The hypnotherapy (biweekly, 6 sessions) took me from waking every hour and a half, to an initial sleep interval of maybe 3 and occasionally even 5 hours - that's a huge improvement, subjectively.
The lowdown on my current problems, post weight loss: My CPAP (really APAP, I guess) goes to max pressure every night, but that's too much pressure. I sometimes feel like it's trying to drown me with air! My theory is that it's calibrated for people who aren't very fit, and my RHR is pretty low (it was low enough to set off bradycardia alarms, set at 50bpm, at the outpatient surgical center) with a respiration rate to match. My theory is that it thinks I've stopped breathing when I'm just breathing very slowly.
I told the CPAP management appointment tech that my device would drive the pressure up well above minimum while I was still awake (though not to full max pressure). She said "that doesn't happen". Then she put me on a device, had me lay on a bed awake for several minutes, and guess what happened? Exactly what I said - pressure increased well above minimum. But they didn't write that in the bleepin' report, so the doctor wrote a script to increase my max pressure setting even higher! Aarrgh. I need to re-engage, and get that fixed.
Things are better than they used to be pre-hypnotherapy, and I've found some interventions that provide minor additional help, but it's still not great. I need to try the weighted blanket idea, I think. (And re-engage with the sleep clinic on the CPAP pressure issue . . . sigh!).5
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