Going To Have A Sleep Study

[janiedelite]

I know it's common for us folks to have sleep issues. My hubby says I've started snoring about a year ago, but in the last 6 months he hears me stop breathing at night too. I rarely get a restful sleep, seem to wake every couple hours, or stay awake early in the morning. Last night I slept finally for 11 hours straight!!! I feel so good today. I notice that my POTS symptoms are much less noticeable on the days I get 9+ hours solid sleep.

So the sleep doc (who's supposed to be the best in town) is scheduling me a sleep study. But he said that if my problem isn't apnea, that most people with insomnia benefit from maintaining a strict 8-hour sleeping schedule. He suggested that I try getting up 8 hours after going to bed no matter how well I've slept, and that after time my body will "reset" itself. I think this would be true for normal people, but I know on days I have to get up early I feel horrible and even more POT-sy.

Has anyone tried this 8-hour sleep schedule?

I think I'm going to stay with my usual long sleeps until I've had the study and we know what's really underlying my sleep issues. But I was just curious if anyone else has had this suggested to them or if you've tried sticking to an 8-hour sleep schedule?

[firewatcher]

Oh yes, this is how I get through my life right now. I have a circadian sleep disorder and if I want to get to sleep at night, THAT is exactly how I have to handle it! After 14 months, (yes over a year of this) I can sleep in on Saturdays, but it takes several days to recover my ability to "get to sleep." He's right, but it will be hard. It will get you really good results for the sleep study though. Be prepared for some ANS wackiness, but it "consolidates" your sleep patterns. Keep a "sleep diary" while you are at it:

when you went to bed

when you got to sleep

how often you woke up

how long you were awake

what happened when you woke

when you got up

how you felt when you got up

whether or not your husband heard you snore/gasp for breath

did you nap that day (don't!)

Sorry sweetie, it stinks! Sleep well

[all4family]

Hi Thankful,

I understand where you are coming from. If I don't get enough sleep, (and trust me it happens way to often) I am a mess. I feel foggy all day, and can't see or think straight. I had a sleep study done, and was found to have the sleep apnea. Although mine was mild they put me on a cpap machine, which I proceeded to fight with every night. I would wake up in the morning exhausted, and the mask was on the floor. I have never been told to follow a sleep schedule like that, so I don't know if it would help me. But most days I don't even get 8 hours of sleep no matter how hard I try. I am happy to say that after 2 weeks of fighting the machine I put it on the shelf, and started sleeping again. Sometimes I also go for spells where it just feels like I can't stop sleeping. But it always passes.

I hope you find some peaceful sleep soon! Let us know how the sleep study comes out. (Oh and by the way my husband was the one who said that I stop breathing at night too. But he slept with my machine on and slept great all night! Maybe I should have kept it for him!)

sweet dreams,

Suzy

[mkoven]

I'm a big fan of treating apnea. it's made a huge difference in all my various ills. Took a little while to get used to the mask, but now won't sleep without it. i feel crummy if i even fall asleep in front of the tv without it.

[all4family]

Mkoven,

How long did it take you to get used to your machine?

Suzy

[janiedelite]

Thanks Suzy and Mkoven! My hubby already uses a CPAP so we'd be a matching pair (if I need one)!

And thanks, Firewatcher! I go to bed at the same time every night (because of my husband's work schedule), at around 10:30pm. It will be hard, but I'm going to try to wake up at 8. Maybe it will help! I know that's more than the doc's recommended "8 hours" of sleep, but I feel so much better when I sleep at least 9 hours. Waking up at 8 will still be earlier than normal for me, and I can see how my POTS does on the less sleep. If I do okay after a week or so, then I'll go really crazy and start waking up at 7....

Firewatcher, I've read some of your other posts about delayed sleep phase disorder, and while it doesn't seem like it's what is wrong with me, I wonder if I'd function better on a different sleep schedule than my husband's. Prior to POTS, I worked second-shift as an RN from 11am to 11:30pm. I did really well going to bed between midnight and 1am and getting up at 9am. Maybe I need to adjust my bedtime. Hmmmm, just a thought.

Suzy, it took my hubby about a week to get used to the machine (my dad, too, who also uses a CPAP). But they both had SEVERE sleep apnea, I mean they'd stop breathing every few minutes. They both felt so much better immediately after using the machines which motivated them to keep wearing them. But my hubby didn't like it at first and ended up pushing it off in the middle of the night for a few nights. He likes his mask which just blows into his nose, not the big mask that goes over the whole nose and mouth.

[Sophia3]

I have HORRIFIC insomnia, alpha-delta sleep disorder and if studied correctly recently, we would guess circadian disorders (my Am blood work for me is normal at 11 am or noon for example...my eye pressure is in the afternoon what most folks are in the morning, etc...My endocrinologist and ANS doc says my body acts like my noon is somebody else's 7 am.

IF I MADE MYSELF get up 8 hours after going to bed, no matter what, I would not still be here. I have taken HOURS to fall asleep in sleep labs and with meds.

I struggle to get an appetite. to stand up some days...easier than others (90% of waking hours reclining in between normal tasks except for my GOOD days which may extend that a couple hours but in segments) Only shower once a week..it's a challenge to leave the house for more than an hour if i can NOT LIE DOWN where I am going.

So sorry, your sleep doctor does NOT GET ANS issues as I "Stay sleep deprived"...so to each his own but I sleep no matter what...this time change has been a &^%$# but I wake up at noon now..but I am too achy with FM without sleep.

The end. Further sleep deprivation fixes nothing and "specialists" do not always know everything nor no what it's like to live in OUR bodies.

just my two pennies

[mjan]

OK..maybe its a good thing to do the 8 hours only..for some..but not others with co-disorders!!

I have had a sleep disorder..looking for narcolepsy with cataplexy. I have apnea and got the nose mask only..forget what its called. It took awhile to figure how to make it fit tight enough that there was virtually NO sound. BUT it would wake me up when I turned and it started hissing. I just couldn't take that..I gave up..tried again...gave up. I think I will have to try again cuz I have DAYTIME APNEA

Anyone else catch their breath cuz of apnea while awake??

Still waiting more testing for narcolepsy with cateplexy. Of course my symptoms are not the standard ones.. my episodes ALWAYS begin with autonomic symptoms..tachy..high BP/HR..then I get so weak I feel as if I am losing conscious ness..cannot move arms or legs or remain alert ...BUT.. I can HEAR... just cannot MOVE!!

Hence my user name is Whats Wrong With me??

Jan

[mkoven]

maybe a week. i found apneasupport.org helpful. they recommended getting used to the mask while awake to desensitize yourself- so i wore it while watching tv. i also had to play around to find the right tightness to minimize leaks. now, really no problems. my sleep is so much better. and it basically eliminated the wacky neurological aura migraine symptoms with middle of the nigth excruciating head pain--immediately. i was dropping my oxygen and it was trigging killer migraines. i also stoppped having nightmares that someone was trying to suffocate me, and stopped needing to pee all night long. it hasn't cured me of all that ails me, but i would be much worse off without it. also helps my general acheyness.

[janiedelite]

OK..maybe its a good thing to do the 8 hours only..for some..but not others with co-disorders!!

I have had a sleep disorder..looking for narcolepsy with cataplexy. I have apnea and got the nose mask only..forget what its called. It took awhile to figure how to make it fit tight enough that there was virtually NO sound. BUT it would wake me up when I turned and it started hissing. I just couldn't take that..I gave up..tried again...gave up. I think I will have to try again cuz I have DAYTIME APNEA

Anyone else catch their breath cuz of apnea while awake??

Still waiting more testing for narcolepsy with cateplexy. Of course my symptoms are not the standard ones.. my episodes ALWAYS begin with autonomic symptoms..tachy..high BP/HR..then I get so weak I feel as if I am losing conscious ness..cannot move arms or legs or remain alert ...BUT.. I can HEAR... just cannot MOVE!!

Hence my user name is Whats Wrong With me??

Jan

Hi Sophia, I was totally thinking what you were saying during my appt today... I don't think this doc understands ANS issues. But that's fine because all I really want is a sleep study to make sure I don't have some serious apnea going on. He is supposed to be the best in my area at reading sleep study results. My hubby doubts his sleep schedule suggestions will be helpful for me. At least I can say that I tried... but I'm certainly not going to torture myself either and go into a POTS-hole . Thanks for your input!

Hi Jan, So sorry to hear about your horrible sleep issues and daytime apnea! And paralysis! Yikes! This doc was a neurologist who specializes in sleep disorders, but willingly admitted not knowing much about my orthostatic intolerance. I'll just take what I need from him (a sleep study) and move on!

Thanks guys, Janie

[goldicedance]

I have been using a CPap for about 2 years and recently changed to a BPaP machine. The BPaP is gentler for me because of COPD related issues.

I use a nasal cusion mask.

Frankly and honestly, every night Iuse the machine. But, not one night goes by, that I don't realize this thing is on my face.

One of the biggest benefits I notice is that I no longer have to keep the bedroom freezing at night so I can get "air."

Perhaps the biggest benefit is the fact that my husband can now get a good night's sleep.

I think it is important to use the machine because if one truly does have sleep apnea you run the risks of all kinds of illnesses (heart/stroke) from the apnea. So, it is really a matter of dealing with the mask, trying different ones, and adjusting it different ways.

I also use Provigil during the day to help improve my wakefulness and brain fog. As a result of the sleep apnea, I no longer have to fight the insurance company over using Provigil for POTS.

Good luck on your sleep study.

I think it is a hoot that after they wire you all up for the study and tell you that someone will be monitoring you at all times, they then tell you to go to sleep normally. What a hoot!

Lois

[firewatcher]

I don't think that sleeping less really helps US (those with dysautonomia, especially POTS) because of the circadian component that is hardwired into everyones normal BP response. Dr. Raj at Vanderbilt acknowledges that symptoms of POTS are far worse in the morning because of it and that makes morning the best time to check for POTS! I was just responding that your sleep doc is NOT nuts in suggesting that you stay in bed less, that is standard advice from any good sleep doc. What he probably doesn't understand is just how dramatically that little change will effect us. I am not nearly as symptomatic if I can sleep PAST the worst part of the day (which is later than someone without a circadian sleep disorder.) I do think that the deprivation will allow you to get a more accurate diagnosis, as the exhaustion builds, your body will attempt to sleep faster (in most cases, again we aren't "normals.") You WANT them to find anything and everything that they can so they can fix it! A night in a sleep lab with no sleeping won't tell them anything! Think of it as going off all your meds before your ANS testing...you want things as naturally screwed up as possible!

Good luck!

[ajw4790]

Hi,

I too have awful sleep patterns and insomnia. I just had a few days were I almost slept all day long, and now I am back to my ol' insomniac self, and not able to sleep more than a couple hours at a time. I still think I need a sleep study, but it is one of those things that has been hard to get a referral out of my drs. for, and it already seems like I am doing testing all the time. So, I always think why add more? But, it is something that I feel may be beneficial.

I hope that your dr. appmts. and the testing goes well, and gives you some answers!

I did see today this article on sleep deprivation therapy to help get back on a "normal" sleep schedule that I thought was timely when I read your post. Not sure it is real helpful, but it does add in there that it may not be for everyone.

http://www.associatedcontent.com/article/1...pg2.html?cat=70

[Sophia3]

i was in a sleep study a couple different times. One for MONTHs with once a month stays in the clinic and some wired up at my home.

some nights I only slept 90 minutes, would not approach REM sleep, and would STILL NOT FALL ASLEEP on my own due to the hyperadrenergic aspect of POTS, the following day.m Just felt wired/tired. Other times I "could crash and nap". In my case it is not of choice of when to sleep.

So we are all different and though "SLEEP SPECIALISTS" love to talk keeping a pattern is important, in the end they 'can be ignorant' if not aware of our dysautonomia. When I saw my sleep doc in the mid 90's that was PRE TTT and dysautonomia dx.

We also know for those severely debilitated, lying in bed IS necessary or reclining with feet up...in between normal though SMALL household routines. For those that can just GET UP and stay standing up, more power to you. I have a few days like that but mostly I "listen to my body and push on the days I can". Info validated by my local doctor and by Grubb when i saw him in 2001.

We exercise on our good days but do whatever it takes to survive.

SLEEPING IS CRITICAL!. Don't worry about your pattern, just rest up for yourself. I am always up late and sleep late..have for 19 years. Living where the sun RARELY shines in winter does not help things to reset natural body rythms either.

but to force yourself to go around with not enough sleep is the same as going around drunk. Your brain and reflexes are off (which complicates things when we have brain fog etc on our normal days, but I digress)

P.S. other BUM info SLEEP docs give. NEVER watch tv to fall asleep, I find that's true if watching the news (yikes..I filter that and read it online) or intense dramas/or movies. I fall asleep EASIER with tv on with timer. I know many OTHERS Help by this as well as we don't get the racing thoughts to keep us awake. I just went thru 7 seasons of the Gilmore Girls on DVD s from the library the last few months. Gonna be tough going back to HGTV or something with commercials. COMMERCIALS can ambush you with bad stuff. So DVD's of funny or light shows can be FAB..and some medication to help you relax.

[mkoven]

I know apnea isn't the only sleep disorder, but I think it is underdiagnosed in general and probably for ans patients. I've recently been told that I have a "high arched palate," which is a hallmark of connective tissue disorders such as eds, and makes the back of my throat pretty crowded. And then there's the floppiness of the tissue as well. since a number of us have eds, I would imagine both of those things might be true for many of us who also have eds, making apnea more likely. It's hard to get doctors to consider apnea in people who don't "look" the part (which is a total stereotype--kids can have apnea!). If you have any inkling that there may be apnea--including a partner who hears you stop breathing, any waking up gasping, excessive sleepiness, please ask your doctor to consider a sleep study. I agree with goldicedance, that you never forget you're wearing a mask, but with it i'm actually getting some decent-quality, uninterrupted sleep, not depriving my body of oxygen, and not adding to the burden of my already taxed ans. untreated apnea sends your ans into freakout mode over and over throughout the night, and is rough on the ans of people without pots. getting used to the mask is an obstacle for many, but there are numerous mask options out there now. i actually find that putting on my mask now MAKES me sleepy, as I associate it with bedtime. and whenever i fall asleep in front of the tv or in the car, i'm reminded that i need it, as i feel so terrible when i sleep without it. Okay, rant over.

[janiedelite]

Lois, thanks for sharing your experience with the Bipap vs CPAP. I'm not looking forward to having to use any device because of my neuropathy constantly causing the skin on my face and scalp to burn. It also burns in my mouth, especially with increased airflow. But I used to work post-anesthesia as a nurse and understand the risks of having a constantly obstructed airway. I'll just do what I've got to do!

Firewatcher, that totally makes sense to try to make myself as symptomatic as possible. Even though I dread how it will make me feel! If I can follow his advice to sleep less, and he sees how really screwed up it makes me, it might help to establish a diagnosis. Ugh! I'm already having more problems with nausea since getting up at 8 yesterday, and today I'm up at 7. It's our anniversary this weekend, though, and I'd really like not to feel horrible. I'm thinking that I might just sleep normally until they schedule me for the sleep study and then I can schedule it out a ways, like a week when I know there's nothing else going on! Then I can really try the "sleep-deprived" thing for the week prior to the study. I'm sure I'll be symptomatic!

AJW, interesting article! That pretty much supports what my sleep doc was saying. Although I noticed toward the end they said this method works if you're healthy otherwise. Oh well! I understand about not wanting to bug your docs for MORE tests, too. I've been complaining to my primary doc for months about this snoring and apnea, but she just wanted to do one thing at a time and get me to Mayo (which I went to last month). Now that that's over, and I have a definitive diagnosis, she's more willing to follow up on other issues like sleep.

Wow Sophia, you describe how we deal with our issues so well. I'm actually in the middle of watching Gilmore Girls, too! I rarely watch intense or scary shows anymore, especially at bedtime, due to the racing thoughts/adrenaline. Due to being diligent about fluids, salt, compression, mild exercise, and stress reduction (all the tips Mayo gave me last month) I've been feeling better in the last few weeks than I have in years! My sleep seems to be much more sound, too, although my hubby still complains of the snoring/apnea stuff.

Mkoven, this doc actually took my sleep apnea seriously but when I described my frequent wakings, lack of deep sleep, vivid dreams, etc. he called it insomnia. I know that these sleep disruptions are more pronounced on my more symptomatic/adrenaline-filled days. But I know what I have to do to treat that... just manage the POTS! If I have apnea that he can treat, then that might help even further with my POTS symptoms too. He also thought it was significant that my dad has had bad obstructive apnea for years.

Thanks everyone!

[ladyt]

hi ...

sleep is wounderfull and so undervalued by people getting it...

Mine is bad, and somthimes worse.. I use meds somthimes, to gett some rest (but seldom slep the night trhuo on them also)...

And is varies, somthimes i sleep rather quikly ( after 30-60 ) min , other nigths it takes all nigth... ..

i ust had a sleepstudie, and got my results to day.. No sleepapn (didn think so , i dont snoore), and no narcoepl (i have no ide about the spelling)..

Ust very bad sleep, and no indications on why... (nothing new)

so acording to the doc i have inital, medial and terminal insomni... i had 8 % rem sleep and 17 deep sleep... But i have no idee about what that meen..

I have looked around the internett to find info.. But not much usefull.. I have been to another sleep doc, He whants me to do the less hours in bed thing.. and i try, but my pots getts worse...

And the last couple of days I have had very dificult to gett awak in the morning.. I periods its very easy.. And its not influesed by the amount of sleep i gett..

And of course i am always tierd..=)

I dont know what to do.. the sleepmeds i can only use somethimes (they stop working).. Painkillers helps a lot too (from no sleep to some, I have been takeing them half a yr..)

I dream of a nice night of sleep.. But so fare its mostly a dream..

[janiedelite]

Hi Casper, I'm so sorry for your sleep difficulties! So many of us can relate. I'm glad you don't have apnea. For me, when my POTS is being controlled I notice that I sleep much better. Far fewer awakenings and a more restful sleep. Frustrating because most people when they're sick tend to sleep more. With POTS, we sleep less. It's kind of a double-edged sword. I hope you can find some relief and rest!

[potsgirl]

Hi All,

My big question for you all is: How in the world can you fall asleep for the study? I can't fall asleep easily when the room is dark, it's cool, I have 'white noise', et'c. I'd love to have a study done, but don't think I could fall asleep!

Anyone?

Thanks, potsgirl

[mkoven]

Most docs will rx something so you can fall asleep. I didn't fall asleep very easily, but slept enough to get a diagnosis. Normally I'm out in minutes.

[Rachel]

potsgirl,

I had to take sleep meds for my sleep study. I can't fall asleep without them.

Rachel

[janiedelite]

Yeah, my sleep doc said I could take benadryl if I wanted, and even pain meds if I need to.

[potsgirl]

Thanks for the info. I had no idea I could take sleep meds to help me relax. I'll go ahead and set one up...

Thanks again!

potsgirl

[janiedelite]

Okay, I did the sleep study last night. I tried sleeping just 8-hours a night but it ended up being more like 9. I guess I'm just not a good masochist. But yesterday I drank as little as possible and did a whole lot (went for 3 walks, bathed the dogs, etc.). I was actually surprised at how well I was still functioning at the end of the day. But I don't feel like I slept well. It seemed really shallow and fragmented and my heart kept taking off. I think it was the adrenaline hangover from the day prior. But that's what I was shooting for!

The tech told me I didn't have any major obstructive events, so that's great. I don't think I'll need a CPAP... although I'll wait on the final word when I see my sleep doc next Monday. I slept on my side because of all the wires, though. I snore and obstruct when I'm on my back (and at home I always end up on my back most of the night!). I tried to sleep on my back but it was too uncomfortable...

[futurehope]

Further sleep deprivation fixes nothing and "specialists" do not always know everything nor no what it's like to live in OUR bodies.

I have to agree with Sophia. I naively listened to my sleep doc about 8 hours in bed, getting up the same time every day.

The result? After a month I was close to being a homicidal sleep deprived maniac. I have not listened to him since. I sleep as long as I think I need to. Doctors sometimes do not understand how dysautonomia affects us. We are not their "normal" sleep patients. That's my opinion.