Feel free to share your stories about Sleep Disorders

[SunsetRunner]

I have read that sleep occurs in cycles but what if your cycles don't always occur in the proper order? For example last night I went from being wide awake to being in a deep sleep. I don't think this is just a Fitbit reading issue and here is why

I was being tested some years ago for Epilepsy (which I didn't end up having) and I had to wear an EKG around with me as well as an EEG (at one point I wore an EEG for 5 strait days). The tests showed that I was asleep when I was awake/along with other wonky sleeping patterns and my heart rate dropped very low at times (not sure what my bpm was but low enough that I have been tested for Bradycardia more than once). No heart defects were found so it was assumed my Bradycardia was a result of exercise. MMRIs always normal. Once after giving birth I fell asleep hooked up to the blood pressure monitor and they rushed in with crash carts because my values were so low they thought I was dead but I could hold a conversation (they were startled to say the least). Sometimes when I exercise even intensely my heart rate is just chill and even throughout. I have literally hammered out an hour long kickboxing workout with BPM of 55, covered in sweat. As I get older my BPM seems to be more normal but I still seem to have something going on. I wanted to get my sleep professionally analyzed but the wait for that was over a year and my neurologist never put me on the list and now that I am no longer being investigated for Epilepsy I no longer have a neurologist and cannot request a sleep analysis (I don't live in the USA). Does this sound like a sleep disorder? Faulty wiring?

Btw I get loads of REM sleep but not much Deep Sleep for my age and I always wake up feeling tired. Sometimes my dreams are so intense and drawn out I wake up more exhausted than when I went to sleep in the first place! I go to bed at 9:43 pm and wake up 5:50 am most days sometimes I attempt to sleep in on the weekends but I struggle sleeping in and it leads to sleep paralysis. I can't stay awake later because I start to literally nod off and if I don't get enough sleep I hallucinate/become unstable so I really don't even bother trying to stay up late if I can help it. I have been diagnosed with severe ADD but what if it wasn't an attention issue, what if I was nodding off? I know I can partially sleep when doing reptitive things like eliptical, I don't really need to be full on so I can doze and keep moving. My mom seems to have problems too with insomnia, she goes to bed really early and then wakes super early.

Does anyone else have a similar issue and has been given a medical explanation? Or is also looking for answers? Or does this just seem like a variant of the norm? Is it just a low, rhytymic heart rate confusing sensors? Does anyone else have sleep disorders please share your story!

Moderator edit: subject for clarity

[SunsetRunner]

[SunsetRunner]

Hi thanks for sharing! I can relate and do not complete more than 1 sleep cycle at a time. The nightmares are much worse and apnea may be involved now as I did gain a little bit of weight, but many years ago my sleep was just as fragmented, mainly with sleep paralysis. One cannot simply get up and no the morning and go about a “normal day” 😉 

[SunsetRunner]

Sorry for type o’s this forum isn’t user friendly when typing.

I too have learned to live with this but it is devistating, specifically to someone who doesn’t understand. Hoping for the best for all!!

[propita]

I used to sleep and wake up, feeling like I could have another night’s sleep.  A job that shouldn’t have been stressful--the bosses were jerks.  Then school that WAS stressful.  I have apnea, but not enough to have it “clinically.”

I’ve had my fitbit alta HR for a couple of months and have been watching my sleep results.  The bookmark of someone my age (55F)?  I’m consistently overdoing the deep sleep, as in past the high-end of the range.  Light and REM are usually in range, but light is usually low-end and REM is usually high-end or past.  Awake is usually out-of-range to the low side, which is surprising to me.

I HAVE been feeling more rested.  Even when I wake up on my own, before the alarm, I usually feel rested lately.  Of course, there are odd days: just last weekend, I slept only 6 hours, woke around 6am, was up 3 hours, them slept 3 hours.  I’m not going to argue it; my body just needed to get some extra sleep.

[Torey_Beth]

@SunsetRunner would you be able to post what a narcoleptic sleep cycle looks like on the Fitbit chart? 

[SunsetRunner]

Here's a pretty fair representation. In actuality, Narcoleptics will spend most of their time in REM and potentially not reach Deep Sleep at all, determined by brain wave activity versus pulse and restlessness.

[Darkstar72]

X2 - I have severe apnea and sleep with a CPAP.  The first sleep study I did I hit apnea quickly enough for the lab to do a titration study the same night.  That's where they put a CPAP on you and adjust the pressure while you sleep to find the lowest pressure necessary to keep your body out of apnea.

When I woke up that morning the tech helped me get all the electrodes off of my body and asked me two quesitons:  1: How did you sleep/Was the CPAP comfortable?  2: Do you scuba dive.

My answer to 1 was I felt better than I had in years!  My brain was able to get oxygen when I slept and was able to share it with the rest of my body!!

My answer to 2 was, yes but why do you ask....

Turns out since scuba divers are used to breathing from an external air source they tend to take to the mask more easily according to this tech's experience.

What I can confirm for myself is I never dreamed when I was undiagnosed.  I fell asleep driving.  I couldn't get enough caffeine in me to keep me awake for all portions of the day.

Now I dream, hit deep, light, and REM sleep. I misread something and thought it was on the Versa, but the Ionic has an O2 sensor built in.  My understanding is FitBit didn't ever turn it on. (at least for the end user)  I personally would like to see that as a stat.  I understand a "fitness watch" isn't a precision instrument, but it detects my pulse within a point or two, has a decent grasp on my sleep duration and what type I'm hitting at what moment, and does a good job at giving me the info back.  I'd love an O2 meter to give me that extra bit of feedback to act as a bit of insurance that my CPAP is working properly AND/OR that my mouth is staying closed all night and my CPAP is doing its job for me.

[Bhanuk]

Kesaiserris,

Well said, I use fitbit sleep tracking just an indicator of a potential problem.

Here's my story and what I am doing about it.

Identifying the problem:

Ever since I have been using Alta fitbit, I have clocking deep sleep of just about 2.5 hours MAX.  That was an eye open but it really explain why I felt not rested which has been happening since many many years. I also seem to have a racy mind (I am in IT leadership) and often like to think ahead and an OCD with planning and executing per plan. Also, I am a Hypothyroid taking Thyroid harmone pill to maintain my metabolism while also being a gym rat and exercise freak.  That said, it did not explain why I am not dead tired as I should be having a very busy day everyday and snooze as soon as I crash in the bed. my BP was normal and no issues ever. My food intake is bland vegetarian with no possibility of any heart burn as I live on veggie protein shakes, oat meal and raw vegetable snakes (feel like a rabbit eating it but I am committed to my health goal!). I occasionally suffer from allergies. My family confirmed I do not snore and I do not take any food at least 3 hrs before hitting the bed at 11pm (I know it is too late).

My point of sharing this is everyone must be self aware of these parameters and go prepared to the doctors for a direction. I most often have sleep spells which I avoid by having loud music and sing along to be totally awake during driving.

What I am doing about it:

I have been researching this and talking to various doctors (General physician), endocrinologist and now sleep specialists.  I shared my data from fitbit, my diet, my work environment, exercise and other parameters that I feel may impact sleep. My general physician suggested the sleep pattern recorded by fitbit is an indication of lack of deep sleep (not necessarily a confirmation) which needs to be checked. They suggested to got through a sleep apnea test which I started to research a good place to go.  NOT ALL places that offer sleep assessment and solutions are great.  I finally chose a Sleep Institute which seemed to  good ratings and have a family friend of mine who is a specialist in that field.  I am going through the study and will update.  However, my physician also noted that thyroid issues (Hyper or Hypos taking too much harmones may impact their sleep pattern) as well as high BP or diet intakes, sleep time (some cannot sleep actively past 12am), snoring are various other parameters that impact sleep issues.  Sleep apnea may not be the issue if any of these parameters are a huge issue.  Just sharing this in the hope that it may help friends on the discussion group. Sleep, much like sex, diet, exercise is vital for the body.  Please do not ignore it.

[Atomic77]

I have had sleep apnea for 5 years now and I use Cpap. I also am hypothyroid.  Sleep is something you don’t want to mess with and so is your health so if you have problems with,sleep get it checked out. The Fitbit is just a tool it is not a substitute for a doctor.

[Eking1129]

I realize this is older, but just came across this and wondered if you ever got the sleep study and what it showed, if so. 

[Barbosa]

I was a call center agent for 2 years and a half. I worked in a graveyard shift so that's why i am awake at night and sleep the whole day. And suddenly i quit my job because of my personal problem. And now i am having a hard time to sleep at night because i get used to being awake at night. So this is my problem now i want to sleep in a normal way but it didn't happen, so i told my friend about this then he told me to try this CBD thing as a medicine i did not believe him at first but i try it and it works for me and now I am sleeping at night at peace. Here is an article that i read about it www(dot)greenmed(dot)io/blog/chicagos-synthetic-weed-makes-bleed-reminds-us-stick-real-thing/ you should read it.

[grrlscout224]

So glad I found this thread. Part of the reason I bought a fitbit was to track my sleep and heart rate. My RHR is about 44, and my bp is fairly low. That, combined with some excessive fatigue and near fainting spells gave my doc some concerns about my heart. After a boatload of tests, the diagnosis is, I'm just really fit.

But I'm still so tired all the time. Even though I sleep 8 hours a night, I wake up unable to function. My concentration is terrible. I get so sleepy in the afternoon, I HAVE TO take a nap. When I nap, I fall asleep immediately and deeply.

If I'm in a spot where I can't take a nap, I'm a bear to be around and a complete airhead. I have to force myself to get up and walk around, so I don't nod off at my desk. Sometimes I'll go to the ladies room, just to rest my head in my hands, and close my eyes for a few minutes.

So my doc ran a bunch of labs, and my thyroid is ok, and nothing infectious or inflammatory is going on. Supposedly, I'm A-OK.

I did some more research, I think I may be narcoleptic. I haven't ever had cataplexy or sleep paralysis, but I have had the hypnogogic hallucinations. I haven't had it happen in years, I think because my life has really settled down. But when I was younger and would stay out late, and go to bed at weird times, it would happen pretty regularly.

I've been trying to figure out if what I'm seeing on my fitbit is normal or not. Looking at what's posted here, I'm thinking it's not. I had been considering a sleep study, and now I think I want to prioritize that a bit more. 

[SunsetRunner]

If insurance is reluctant to authorize one, I recommend bringing the Stanford or Epstein Sleep Scale to your provider's attention. I say that for anyone who searches or follows this thread.

[grrlscout224]

Thanks for the tip! I'm totally going to do those and see what I come up with.

My insurance company is fine with me seeing a specialist and getting a sleep study, but because of my plan (they pay nothing until I meet my deductible) I would have to pay for it, regardless.

So, I've narrowed it down to two providers in my network. One is a pulmonologist and their study is the cheapest. I suspect it's one of those rigs that you take home with you. From what I understand, only good for detecting OSA.

The other is a neurologist, and their study is almost $100 more, so I would hope it would be something more extensive. Also, if it turns out to be narcolepsy, I'd think a neurologist would be the one most likely to spot it.

There are others in network that are 5x as much, and I just do not have that. Heck, I don't even have the money for the cheap ones, but this fogginess is really impacting my work and relationship.

[SunsetRunner]

Best of luck with all this! Ironically, I was first misdiagnosed by a neurologist who was not using accepted guidelines for interpretting the sleep study data. He has since abandoned his practice, owing his employees back wages and neglecting all patient records. I was correctly diagnosed several years later by a Cardiopulmonologist's Physician's Assistant!

[Eking1129]

Have you had your hormones tested? I’m having issues and I’ve been tested once and plan to do it again (I’ve had a second baby so I have to re-test after the postpartum phase.) All my other blood tests, by prior doctors, said I was within normal range, until my ob/gyn did a follicular function test which requires having your blood taken every couple days for a Week to a week and a half, at a certain time in your cycle. She found I was low in both estrogen and progesterone but my progesterone was superrrr low. When I started taking compounded progesterone is actually increased my energy levels. I highly suggest this test to women that have exhausted other tests and still have issues. Hormones can totally cause sleep issues as well as energy issues. Maybe worth a shot. 

[Bhanuk]

Well said sir.  Absolutely the best advise!

[Bhanuk]

Hi there.  I am sorry for the late response (better late than never!).  I have recently concluded many tests and the results are eye opening.  What's more baffling is the many variables that can impact your sleep.  My doctors diagnosed me that I had more than necessary Thyroid harmone level (apparently more dosage of Synthroid for my Hypothyroidism as my system is producing more as well).  High TSH level may make you jittery and always makes you restless. Also, l also realized that in the zest of making 15K steps, I was walking a lot before hitting the bed but after taking my protein shake.  Apparently exercise just before bed impacts the sleep pattern.  Also, Sleep study confirmed that I have sleep apnea.  My Doctor is yet to confirm the remedy which I am thinking they will recommend CPAP machine. Just sharing an update and I hope this helps.

[grrlscout224]

Due to a different concern, I had my hormones tested a couple years ago, and they came back normal. But I'd consider having them done again, since this fatigue really kicked up in the last year.

Thyroid was part of the recent round of labs, and they were fine.

Only weak spots were B-12 and D were on the very low end of normal. I've been taking supplements for the last couple of months, but haven't noticed any effect.

Maybe I will go with the cheap pulmonologist. It really seems to be luck of the draw. 😄 

[SunsetRunner]

Since a pulmonologist ordered the most recent study, not a neurologist, it showed normal from a pulmonologist view. Although I don’t have apnea, I had approx 4 hr total sleep time with 41 arousals... and I clearly remember awakening from 2 dreams which the Fitbit reflected... then they sent me home after awakening #2. Basically the rest is not their job. After falling asleep once I got home neither the Fitbit nor me could keep up with the frequency of awakenings. So I’m back to where I was in 2013 - getting a neurologist to order a PSG 48 hour eeg and mlst. I have to fight for this. Based on my medical history this shouldn’t be this hard. Keep you posted.