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

[WavyDavey]

Hi @SunsetRunner, thanks for sharing in detail.

I would point out that the sleep stage tracking is fairly new here. For a serious medical condition, I'm not sure how much I'd rely on it for condition monitoring. It's not an exact science, at least not yet.

Deep sleep deprivation seems more often reported here to than not enough REM. That's why I started a thread discussing it that's near the top. Hopefully you may benefit from it also.

[SunsetRunner]

I wouldn't use the fitbit sleep tracker as a diagnostic tool or in place of a medical examination, I think it is more fun/interesting than anything else. I am just interested to learn more about what others think of sleep tracking what their results are with sleep tracking and if others are experiencing difficulties with sleep. Actually I thought not getting enough deep sleep made sense, since I can't really say I have insomnia, I do sleep I just don't feel refreshed. I am interested to see if anyone has the sleep difficulties I have described in the post, baring in mind that the data I am using comes from actual EEGs and EKGs. I am happy though that the fitbit seems to be working at night as I know some people had trouble because of various sleep issues like sleep apnea and restless leg syndrome.

[WavyDavey]

That's great you're finding use for your Fitbit, and inviting others with sleep disorders to share  My post above was more for the other readers of the forum, just as a disclaimer.

One thing I've learned is that the body seeks balance. If a person has a lot of mental activity, they may need the REM time to process it. If the body is stressed, it may need more deep sleep. But as you know, sleep disorders mess with that balance.

[SunsetRunner]

They do I hope that I will be able to achieve a better balance. I haven't had my fitbit long and so far I haven't had a night where I perceive myself as dreaming really heavily, I am curious to see if on the nights I perceive myself to be dreaming heavily if I am actually getting more REM. I am a writer and I have trouble turning off my creative brain if I haven't really given myself time to create in the day, I end up all night asleep but still busy in my dreams. I have lucid dreams that I can control and it just gets to be a tremendous amount of work sometimes dreaming lol

[MrsProck]

I don’t have and answers for you, but your situation sounds somewhat similar to mine. My BP stays around 90/60 and until this pregnancy, BPM stayed at 55. No health problems or concerns, not an athlete by any means but have always had the low blood pressure/heart rate. 

I fall asleep quickly most nights - my husband hates it but as soon as my head hits the pillow I’m out. If I sit still for a few minutes, I fall asleep or start to doze off. The sleeping while moving thing is different, never done that, my hr does go up a bit with movement.

I was just looking for anything on here related to deep sleep patterns and if it’s normal for someone to immediately fall into deep sleep, so I guess I’ll keep watching this post to see.

[SunsetRunner]

 I have low blood pressure as well pretty much the same during the day but at night it gets very low apparently. I also do the dozing off thing I am not sure if its micro sleep caused by some condition or if it is just that my sleep quality is poor. And I am not sure if my sleep quality is poor because of some medical issue or if it is related to stress or something. Do you have sleep paralysis too?

I remember once as a kid I was playing with a friend during a sleepover and I fell asleep and was unresponsive to her when she called to me but I kept moving the toy in my hand and so she didn't know I was sleep at first until she looked at me and tried having a conversation with me.

When I do look up some of this stuff narcolepsy pops up 

[MrsProck]

No sleep paralysis, and def not narcolepsy. Just low heart rate and blood pressure and almost always fall asleep (deep sleep) within a few minutes of laying down. My dad used to pick on me because I fell asleep sitting up during the Peach Bowl one year and slept like that through the entire game 😂

I always assume it’s because I wake up very early and most days I don’t have much down time. For my current job I wake up around 4, so bedtime for me is 

by 9pm (I’d prefer 7:30 but it’s not really possible). If I try to nap, I usually have a really hard time waking up and getting moving, I’m assuming because I immediately fall into deep sleep and my heart slows down to ~40 bpm. I wake up cranky and freezing cold, which is worse to me than not napping at all.

Caffiene is one of my best friends at this point. When I discovered cold brew it helped a lot, because I don’t have to fool with making a pot of coffee or energy shots. 

[SunsetRunner]

How do you check you HR for during sleep? I would be interested to see mine.

I have trouble with naps too and rarely take them. I wake up at 5:30 am and go to bed about 9:40. 4 o'clock I would be falling asleep too! I fall asleep during action movies because I find them so boring if they don't have a plot haha

Oh wow haha

I have some sort of allergy to caffeine 

[Daves_Not_Here]

Hi @SunsetRunner -- The issues I've had with sleep are much less challenging than yours, so I'm somewhat reticent to offer suggestions.  However, the following practice really made a difference to me:  I read fiction from a paper book (not Kindle or anything electronic) until I get sleepy.  Non-fiction is to be avoided because of our tendency to try to incorporate it into our current personal situations.  I believe this suggestion is made by Tim Ferris in The 4-hour Workweek.  The effect is to clear and calm the mind leading to more restful sleep, which it does for me.

[katstoudt]

For Kesaiserris:  Have you ever been tested for narcolepsy? Some of the information here and in your other comments sound like textbook narcolepsy.

[katstoudt]

For MrsProck:

What you are describing can occur in narcolepsy. Have you ever had a sleep study (including both overnight and daytime napping in one study) to check for it?

[katstoudt]

Hi, Daves_Not_Here:  I like this suggestion about paper vs ereader when trying to relax to fall asleep. It is a thought that had recently occurred to me, but the wrinkle of fiction vs nonfiction is a new idea that I will consider.

[ftzygote]

I am new to fitbit and this forum, but I was diagnosed with sleep apnea about 13 years ago.  I finally got a sleep study done and was recommended to use a CPAP.  Ever since I got my 1st CPAP I have not slept at night without it. (on my second machine) Even after loosing 110lbs in the last year, I still use my machine.  If you think you have any kind of sleep disorder, talk to your family Dr. about it and if he suggests a sleep study, do it.  It could save your life and is usually covered by your health insurance.  I have personal experience with people who have died due to an uncorrected sleep condition.

[HollyLit]

Hello Kesaiserris,

I just got my FitBit in the mail today. I purchased it to help me monitor me sleep, for many of the same reasons you mention: bradycardia, low blood pressure, fatigue, ability to go into deep sleep quickly.

You might consider that you have something called Upper airway resistance syndrome (UARS) - UARS sufferers are typically younger, leaner, and predominantly female. With UARS, there is something that is impeding on the airway, but instead of causing sleep apnea, it wakes us up. The result is non-refreshing sleep and all the issues associated with that.

Here are some good articles to check out:

http://www.elle.com/beauty/health-fitness/a44363/an-awaking-nightmare/

http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resistance-syndrome

If this resonates with you, let me know. I'm currently going down this path and am convinced this is the source of my 17-year long fatigue and sh*ty sleep. I have found a number of really good (and bad) resources relating to UARS.

Holly

[SterlingVix]

Hi kesaiserris, and everyone.

I guess I'm a little surprised this hasn't come up, but I think you should research "idiopathic hypersomnia":

• https://sleepfoundation.org/sleep-disorders-problems/idiopathic-hypersomnia-and-sleep

It is uncommon, but I'd say that it's worth looking into based on your description.

I can tell that your sleep / wakefulness is having a profound impact on your life, you're really taking extraordinary measures to understand if your sleep is atypical. The references to narcolepsy also stood out to me (I think my pulmonologist who administered the sleep studies that led to my diagnosis mentioned strong similarities between idiopathic hypersomnia and narcolepsy).

I'll share my perspective on it; hopefully it can help anyone here narrow down the possibilities or understand a new possibility for themselves.

This is how I ended up with my diagnosis (about 5 years ago, maybe 6?): I went to my regular doctor and told him I had bad sleep and would like to improve it, if possible. This was not new (my whole life I've struggled with sleep), but we went through a pretty methodical list of diagnostics. I went on a prescription of antidepressents (which, I'm very grateful to say, did help tremendously with the very legitimate depression I had and had not taken the time to address!); after some time it was clear that the depression symptoms were improving, but my sleep was still a struggle, so we looked around more.

When I first read the list of symptoms for idiopathic hypersomnia I was stunned; it was maybe the only time in my life I've looked at a list of symptoms and didn't have to think "is this a thing? Am I trying to justify something here?" Symptom after symptom felt incredibly relevant and accurate.

I can sum up my current take on it, which is: "pretty much all the time I'm falling asleep, even though I shouldn't be."

Eventually I got a referral to a pulmonologist, we went through a long and (almost)-prohibitively expensive diagnostic process that ended up around $10,000 (Care Credit made that even possible, I also highly recommend them); but I ended up with a bunch of numbers and squiggly lines that showed a neurological root to my excessive sleepiness. There it was.

There are several vigilance- and wakefulness promoters available through prescriptions. I've been on a stable dose of Modafinil for several years, and, for me personally, it has completely changed my life. I had not realized what a hell I was living in until I was out of it.

Hopefully you've already found a great solution to your concerns that doesn't involve a diagnostic where you sleep with wires on your face, because that wasn't a *super* fun experience, I'll be the first to admit. But I'd check out idiopathic hypersomnia if not.

[MikeR417]

You should get tested at a Univ. sleep center.  What you both have described is similar to my condition.  There are three different sleep disorders, and narcolepsy is one.  Another is idiopathic hypersomnia, which is what I have and sounds similar to what you both describe.  It is treatable!

Mike

[SunsetRunner]

Your symptoms are very narcoleptic in that they could be out of my sleep journal. I can show you what Narcolepsy looks like on the Fitbit sleep thing. It incorrectly thinks my best sleep is Deep Sleep and frequently cannot even tell I am asleep due to restlessness. The definitive question for Narcolepsy is, if you take a 15 minute nap, do you dream? Normal sleepers do not. Narcoleptics do because their REM is so dominant. Other tells are: falling down laughing, falling down angry, sleep walking, hallucinating right before falling asleep or immediately on waking, as REM crosses into wakefulness. Narcolepsy is an autoimmune disorder, not a behavioral issue as has previously been suspected. To be honest, it's the biggest reason I got a Fitbit, to help log my sleep and understand my sleep disorder. 

[SunsetRunner]

Hi @SunsetRunner - my heart goes out to you as I can relate to severe sleep issues. I am dx primary insomnia and sleep paralysis based on a sleep study and a 48 hr EEG. That was 5 years ago. The sleep center did not order a MSLT at the time. I personally suspect narcolepsy without cataplexy. I am also dx ADD. Since 2013, I have been dx PTSD and have recurring nightmares that wake me. The frequency of this is upsetting. Awake then asleep and awake again within minutes.

I do go right into deep sleep sometimes, and the graph shows I go from REM to awake. It does not show that I go from wake to REM but I am very well aware of when I have sleep paralysis, it has been observed by my bed partner, and I remember it all. It’s completely different than nightmares. I video tape my sleep on occasion and have observed same.

The sleep tracking is VERY off with light sleep. I am more times than not awake when’s it thinks I’m in light sleep. 

Obviosuly I need another sleep study. Ive been through the ringer and back with sleep specialists and many other doctors. I’m a tough case and would be happy to hear from anyone else who can chime in on any of the above.

We have already explored any and all sleep hygiene issues, medications, you name it and my doctors are at a loss. I’m hoping my next sleep study shows narcolepsy. Seems to be the only thing left. 

My charts vary but I would be happy to post them just have to figure that out.

good luck to all. Also, if anyone knows of a sleep lab anywhere in the US I am willing to travel for the correct dx. 

Oh oh and caffeine makes me bonkers 🙂

[derralh50]

My major sleep disorder began back in 2007 and ended my job as a long haul truck driver. I always go right to sleep but can only stay asleep, averagely, about an hour and a half to two hours most times. I have been telling the VA for more than 11 years that I have very intense dreams that cause major anxiety and frustration, so much it wakes me up. I have had three sleep studies done. Stopping breathing more than 5 times in an hour one is rated with sleep apnea. I tested 5.5 all three sleep tests. Barely, or marginal sleep apnea. I am so happy that a while back the fitbit app started the sleep cycle graphs. Now I have proof to show to my VA Mental Health Provider and my Sleep Doctor. The dreams are waking me up.

Here are some examples of my sleep cycle graphs, taken with screenshot.

March 19, 2018 http://prntscr.com/itkvqc

March 14, 2018 http://prntscr.com/itkurh

March 7, 2018 http://prntscr.com/itkv9m

I impulsively get out of bed and on my feet when I wake up from a bad dream. (They are all bad.)

I talk in my sleep. Sometimes propped up on on elbow talking for long lengths of time.

I struggle, fight with the blankets or punch my pillow sometimes.

I go straight into REM as soon as I go to sleep often.

I have woken up sitting in a chair not remembering how or when I got there.

I usually have three or four unique dreams a night, and can remember them, especially the very last one when I wake up in the morning.

I live each day on a roller coaster of fatigue. I take naps because I have too. Can't go any longer. My therapist calls them power naps. I NEVER feel refreshed.

About every two weeks I take naps all day long trying to catch up on my rest.

When extremely fatigued I lose my concentration, problem solving abilities, and short term memory. Daily. Nap time when this happens.

WebMD has a good web page covering types of sleep disorders.

https://www.webmd.com/sleep-disorders/guide/sleep-disorders-symptoms-types

My VA Doctors have tried every know medicine and sleep therapy they know of, more than once over the last few years. Nothing has changed. Nothing worked.

Bottom line for me is that I have learned to live with it, and adjusted my life accordingly.

It helps that I am 100% service connected total and pernament rated by the VA. Depression, anxiety, and insomnia. (Can't stay asleep) My Mental Health Provider has basicly told me that all three of these are inextricably intertwined.

My diagnosis:

Parasomnia

REM Sleep Behavior Disorder