Anyone else out there with a sleep disorder?

ACDodd

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.

jdubois5351

amandaeve wrote: »

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.

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.

amandaeve

ACDodd wrote: »

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.

nowine4me

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.

Trina2040

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.

mom23mangos

nowine4me wrote: »

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.

singingflutelady

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.

GottaBurnEmAll

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.

AnnPT77

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!).