new and scared

crossfit · Post by **crossfit** » Mon Jul 07, 2008 8:39 pm

Hi all,

I just came home today with my diagnosis from last weeks sleep study. I have severe sleep apnea with 61.4 respitory events per hour (7 plus hours of sleep in the study).

On the one hand, I am thrilled. I suffer from obesity, depression, high blood pressure, heart arythmias, exhaustion, chronic pain, and more. I am so excited that there might be relief in sight for me.

On the other hand, I am terrified. My sleep doctor is so booked that I won't get another study to set up the CPAP for 6 weeks (unless someone cancels which happens a lot apparently). I am afraid to go to sleep now without treatment.

So, I do have some questions. My study has a few different indexes and I am not sure what they all are. What is the difference between the index for "apneas and hypopneas" and "all respitory events"? Which number should I be looking at?

also, does anyone know where I can get info on the different sleep stages and their import? I know about REM (which I only have rarely apparently) but I want to know more about stage three and four as I didn't enter stage four at all the whole night. All I know is that it is deep sleep. I once knew all this stuff - I studied it in college (got a masters in psych) but that was years ago and so much more is known now.

Last question for the moment, what should I be looking for primarily when I do go back to actually buy my cpap?

Thanks for your help. I have learned a ton just reading the forums.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

GumbyCT · Post by **GumbyCT** » Mon Jul 07, 2008 9:13 pm

All those numbers are important as all interrupt your sleep, so the idea is to minimize ALL events. For a machine I would want one that is data capable so I can track my progress. Esp. if you can't get into the doc. You will have to learn how you can help you.

Start at the Yellow Lite bulb - Our Collective Wisdom found at the top of the page at http://www.cpaptalk.com
viewtopic/t14303/New-To-CPAPtalkcom-Cli ... tbulb.html
cpaptalk-articles.php

READ cpaptalk.com FAQ
cpaptalk-faq.php

For Acronyms & Definitions
http://www.sleepnet.com/definition.html

Understanding OSA - worth your time
http://www.resmed.com/en-us/patients/ab ... 40x380.swf

Good Luck,
GumbyCT

sleepycarol · Post by **sleepycarol** » Mon Jul 07, 2008 9:31 pm

Welcome Crossfit.

Gumby has covered the main points about the informative information that can be found on the board.

Hang around and you will learn a wealth of information that will better enable you to get a good nights sleep eventually.

Insomniyak · Post by **Insomniyak** » Mon Jul 07, 2008 9:50 pm

Hi Crossfit

Do you have your report back? Go onto apneasupport.org and sign up, there is a forum there on sleep-studies, post your report and scores there and you will get more feedback than you dreamed of. Your body needs that stage 3 and 4 sleep as it is the restorative stage of sleep we need to feel rested. Sounds like you hardly had any and it is no wonder why you are feeling the way you are.

The hardest part for all of us was/is waiting now that you know there is a cure to this insanity caused my lack of sleep for all these years.

I assume you are on the cancellation list so hopefully you will get in sooner for your titration. In the meantime, as far as CPAPs, call you insurance co, and find out who the local Durable Medical Equipment (DME) suppliers are in your plan. Research the CPAPs online, (2 most popular with the features that are a must are the Respironics/Remstar Pro M and the Resmed S8 Elite II) see what the DME's willingly carry and get a read on how willing they are to work with you. They ARE like car sales people. Ask them what their exchange policies are on masks and they should tell you 30 days with no limit or within reason.

Hang in

crossfit · Post by **crossfit** » Mon Jul 07, 2008 9:55 pm

Thanks, I just checked my insurance. Its good. Pays 100% after a $100 copay. My sleep lab seems to also obtain the equipment. I am not sure if they only carry certain lines or what but will figure that out before my next appointment.

And yes, I am on the waiting list. I might actually call my doctor tomorrow with some more questions. They had me see the nurse instead since he was running late and she had someone with her and was a bit less connected and thorough with me than I would prefer.

Perchancetodream · Post by **Perchancetodream** » Mon Jul 07, 2008 9:58 pm

Welcome, Crossfit. I can sympathize with your concern as I went through the same type of delay before I finally got my second sleep study and could order my machine. The more you read the articles suggested by Gumby, the greater will be your security.

A forum member suggested to me that my apnea had not occurred overnight and that the delay in receiving therapy, although frustrating, would probably not prove fatal. He was right.

Make sure you read all you can and study up on the different types of machines and masks before you return and are faced with making decisions about what you will need as far as equipment goes. The exact type of machine that you will need will depend on the pressure required to stop the apneas and hypopneas from occurring. If you wish to monitor your therapy, you will want one that is data capable.

And ask all of the questions you want. Somebody may be able to guide you to the answers.

Good luck,
Susan

crossfit · Post by **crossfit** » Mon Jul 07, 2008 10:42 pm

Okay, I registered and posted on that other site. My name there is also crossfit (you can also find me in various mmorpgs with the same name but those aren't sleep related. Well, they keep me up so maybe they are lol)

I really appreciate the help already. I am more relaxed than I was and feel optimistic again instead of just scared.

rzr632 · Post by **rzr632** » Tue Jul 08, 2008 4:08 pm

Welcome crossfit....you have already received lots of information advice from your post, so I'll just try to give you some encouragement. I am on week 5. My sleep study showed that I was averaging 92 events per hour and the nurse even burst into the room once during the night because my breathing had stopped so long she was about to hit code blue. So, I know the terrified feeling you have. I was absolutely afraid to go to sleep. But as others have said, I was doing this for years before the study. I can do it for a few more days before I start therapy. At least now I know what is causing me to fall asleep in meetings, on the drive home, watching tv, etc.

Everyone I talked to kept telling me to hang in there for at least three weeks. And they were right. The first night was awlful. The second night a little better. Each night got a little better. After I hit that three week mark, it is much easier to fall asleep and I'm sleeping throughout the night. It amazes me still that I lay down and the next thing I know it is the next morning and I feel like I can take on the world.

I'm very overweight, but now I have the energy to do something. I'm joining a gym, doing more with the kids and really enjoying everything more than I have in years. My events have gone from 92 an hour to averaging 0.8. Again, I'm amazed.

When you start therapy, hang in there. Remember the end result is so worth the adjustments you go through. I had to learn to sleep on my back and sleep with my mouth closed. It can be done.

Good luck and post any time you need any encouragement.

SuperGeeky · Post by **SuperGeeky** » Tue Jul 08, 2008 4:24 pm

If the links above didn't say so, what can you do to minimize your apnea in the meantime?

For example, such as making it so you sleep on your side. With the severity of your Apnea, I have no idea if that will make a difference. Might be worth looking into...

Recently, articles circulated on the internet that drinking Green Tea will help prevent or minimize brain cell damage. I really like drinking Green Tea anyway

Has to be some additional ideas on minimizing the harmful effects without CPAP therapy!

Take care,

SG

Wulfman · Post by **Wulfman** » Tue Jul 08, 2008 4:30 pm

If you'd have posted all of your sleep study data on this site, someone probably would have taken a look at it, too.

Here's some definitions and some guidelines (previously posted by Snoredog) to do some analysis on your own sleep study.

Den

DEFINITIONS:

APNEA = cessation of airflow for 10 seconds or greater.
HYPOPNEA =>50% decrease in airflow for 10 seconds or greater with a decrease in oxygen saturation of >3%.
APNEA/HYPOPNEA INDEX (AHI) = apnea plus (+) HYPOPNEA/hour of sleep.
RESPIRATORY AROUSAL INDEX (RAI) = AHI +snoring related EEG arousals/hour of sleep.
AHI/RAI** Scale =<5 events /hour = (none); 5-15 events/hour = (mild); 15-30 events/hour = (moderate); >30 events/hour = (severe).
Respiratory related sleep fragmentation: Sleep arousals due to respiratory events or snoring.
Desaturation = Drop in O2 oximetry distribution saturation by 3% below average saturation.
SaO2 scale: >89%=(none); 85-89%=(mild);80-84%=(moderate); <80% (severe).
EPWORTH SLEEPINESS SCALE =<10=(does not indicate EDS (Excessive Daytime Somnolence));10-15=(indicates daytime somnolence-not excessive);>16 (indicates EDS).
RESPIRATORY EFFORT RELATED AROUSALS (RERAs)=Sleep Arousals due to respiratory events characterized by pressure flow limitations in the airflow indicator channel without significant O2 desaturations.
StageIII and StageIV are combined and referred to as Deep Sleep.
Sleep Efficiency = Normal is >80%
As established by AASM/ABSM 1999.

Normal Sleep Architecture:
Stage1: 5%
Stage2: 50%
Stage3: 10%
Stage4: 10%
Stage REM: 25%

Stage3&4, REM decrease as we age.

Stuff seen on a PSG Report:

Arousal: An interruption of sleep lasting greater than 3 seconds.

BR Arousal index: The number of breathing related arousals(apnea, hypopnea, snoring & RERAs)multiplied by the # hours of sleep.

Bruxism: Grinding of the teeth.

Central apnea: A respiratory episode where there is no airflow and no effort to breathe lasting greater than 10 seconds.

EEG/EOG: Comments about sleep stages, brain waves (EEG), or eye movements (EOG)

EKG/ECG: Comments about heart rate, abnormal heart beats, etc.

EMG: Comments about leg movements and or teeth grinding (bruxism).

Hypopnea: A respiratory episode where there is partial obstruction of the airway lasting greater than 10 seconds. Also called partial apnea or hypo-apnea.

Non-supine: Sleeping in any position other than on the back.

NSR: Normal sinus rhythm.

NPSG: Nocturnal Polysomnogram, or sleep study.

(#)Number of Awakenings: The number of pages scored as wake after sleep onset.

Obstructive apnea: A respiratory episode where there is a complete cessation of airflow lasting greater than 10 seconds.
PLMs: Periodic limb movements.

PLM arousal index: The number of periodic limb movements that cause arousals multiplied by the number of hours of sleep.

PSGT: Polysomnographic technologist.

REM latency: Latency to REM(dreaming) from sleep onset.

RERAs: Respiratory effort related arousals. Episodes that are not apneas or hypopneas, often related to loud snoring, that generally do not cause a decrease in oxygen saturation.

Respiratory: Any specific comments about respiratory events.

RPSGT: Registered polysomnographic technologist.

Sleep efficiency: Total sleep time multiplied by time in bed.

Sleep latency: The first 30 seconds (one `epoch' of recording time) of sleep.

Sleep onset: The first 90 seconds (3 `epochs) of uninterrupted sleep.

Sleep stage shifts: The number of incidents of sleep stage changes.

Snoring intensity: Level of snoring loudness determined by the sleep technologist. Ranging in degrees from mild to very loud snoring.

Spontaneous arousal index: The number of spontaneous arousals (e.g. arousals not related to respiratory events, limb movements, snoring, etc) multiplied by the number of hours of sleep.

Stage 1: The lightest stage of sleep. Transitional stage from wake. top

Stage 1 shifts: The number of times the sleep stage changed to stage 1.

Stage 2: The first true stage of sleep.

Stages 3/4: The deepest, most restorative sleep.

Stage REM: The dreaming stage; Normally occurs every 60-90 minutes.

Supine: Sleeping on back.

Time in bed: The time in the study from `Lights Out' to `Lights On'.

Total arousal index: Total number of all arousals multiplied by the number of hours of sleep.

Total # of PLMs: The number of leg movements in sleep that last greater than 0.5 seconds.

Total sleep time: Total time asleep.

WASO: Wakefulness after sleep onset.

WNL: Within normal limits.

Pad A Cheek · Post by **Pad A Cheek** » Tue Jul 08, 2008 4:32 pm

Hi
rzr632 I am understanding that you think you have to sleep on your back?

The sleep tech asks us to sleep on our backs so they can get the worse case scenario to titrate you properly. That is the worst position for sleep apnea because gravity is working against keeping your throat open.

Actually sleeping on your side or on your stomach will be better for your apnea if you can manage that.

Take care and restful sleep to you.
Karen

rzr632 · Post by **rzr632** » Tue Jul 08, 2008 5:34 pm

As odd as it may sound, I used to always have to fall asleep in a position of semi-fetal, semi-side, semi-stomach with the pillow folded up, wrapped around half my head. Per my wife, as soon as I was asleep, I would flip to my back and stay that way the rest of the night. With cpap, I tried all differnet kinds of positions and with the hose over the head, down the stomach, above the sheets, below the sheets, etc. The most comfortable I found, and what works best for me, was on my back, hose down across my chest under the sheets. But I had to learn to adjust to that way of falling asleep, while trying to maintain my panic of not being able to breath freely (getting used to the apparatus), getting to sleep before the ramp is over (my pressure was a 15, but has now been reduced to a 12), etc. It is what works best for me, but still had to be adjusted to.

echo · Post by **echo** » Tue Jul 08, 2008 5:47 pm

crossfit - one important thing to be careful of when buying your xPAP equipment is to make sure that you get a data capable machine that records more than just compliance hours. Some machines sound like they're data capable, when all they do is report the number of hours you've used it. What you want is a machine that can record your apnea's and hpopnea's, mask leaks, etc.. so that you can monitor your own treatment. Also make sure to get the card reader, software, etc, that the machine requires. Then you can track what's happening and make nifty printouts to take to your sleep doc
APAPs are always more flexible than CPAPs, because you can always run an APAP in CPAP mode, but you can't make a CPAP run in APAP mode. (APAP = auto adjusting CPAP)

Hopefully you will have a choice (and if not, being polite but insistent works). If the doctor writes out the exact specific machine that you need, in the prescription, then the DME will have to give you that. Otherwise you will probably just get the bare-bones no data capable machine.

As for what kind of CPAP or APAP to go for... I guess that's a bit hard to say if you haven't been using one for a while. There's quite a bit of info in the forum + collective wisdom on features like C-flex and A-flex, heated humidiers (most people need one!), heated hoses (to combat "rain out"), and a number of other things.

Last year I was also in my own personal hell right around this time, waiting first 6 weeks for the PSG study and then another 6 weeks for the titration... try to use that energy to read as much as you can on this site! For example, you can search previous posts for keywords like "c-flex".

Go to cpap.com and check out the various masks : nasal masks, full face masks, hybrids, nasal pillow, the list is endless.
Edit: maybe more so than the machine (but not always), the mask is really the key to the treatment. And it's always hard to know just by looking at a mask which one will end up being your bed-time buddy.

If I had my tirtration to do all over again, I would have taken a mask in with me, one that I knew would work. I got the crappiest piece of s**t and couldn't sleep at all with it. If possible (friend, cpapauction.com, ...) try to get a good mask to take with you, one that you've worn and know what it feels like to have it on. Believe me, the first few hours that you sit with it on are NOT enough to relax you into sleeping with it the whole night. Even better, if you nkow someone with a cpap, spend a couple of hours getting used to it with theirs (and your own mask, and don't use an excessively high pressure). (Problem with trying the mask w/o the cpap air is that it feels differently once the air is pumping through it).

There area actually quite a few threads describing how you can prepare for the titration study - probably some are in the collective wisdom already.
good luck, and keep sane during the wait. i know it's very annoying! But be glad you're here, and above all, pat yourself on the back for being so proactive and involved in your own therapy! That is definintely the key to succeeding and not giving up on XPAP therapy.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): nasal pillow, cpap.com, C-FLEX, Titration, CPAP, DME, Prescription, auto, APAP

crossfit · Post by **crossfit** » Tue Jul 08, 2008 6:25 pm

there is a lots of good things here but for now I am going to respond to only the back sleeping thing. I am unusual I guess but according to my sleep study, I have more apneas on my sides than on my back.

I will post my sleep study here too now since its all nicely typed and succinct:

total recording time: 455.3 min
total sleep period: 448.1 min
total sleep time: 389.0
sleep efficiency: 85.4%

Sleep onset - 7.2 minutes
number of stage 1 shifts - 46
number of stage shifts - 153
number of awakenings - 49

number of REM - 1
REM latency - 147.0 min
REM latency minus Awake - 133.5 min

Then they have a section on stage distribution with says basically that I spent
59.1 minutes awake after sleep onset
59 minutes in stage 1 (TST - 15.2%, latency 0 min)
216.5 minutes in stage 2(TST - 55.7%, latency 21 min)
68 minutes in stage 3 (TST - 17.5%, latency 091.5 min)
zero minutes in stage 4
REM for 45.5 minutes ((TST - 11.7%, latency 147 min)

Then next page says I have no central sleep apneas, no mixed, and then:
obstuctive apneas:
number 116
index 17.9
mean duration (sec) 15.7
longest duration (sec) 48.1
occur in REM 38
non rem 78
rem index - 50.1
non rem index 13.6

hyphpnea events
number 2
index .3
mean duration 20.2
longest duration 23.6
rem 0
non rem 2
rem index 0
non rem index .3

Then under respitory events it has this:
apneas and hypopneas: 18.2 total 118
RERA's 43.2 total 280
All respitory events 61.4 total 398
supine 75.9 total 200
non supine 51.5 total 198.

crossfit · Post by **crossfit** » Sat Jul 19, 2008 12:13 am

wow. You guys are awesome.

I just came back to look at this post so I could show my hubby the swf file in Gumby's first post. Going through everything just now, I realize that I actually understand much of it. That because of all your patience folks as well as the time and energy you have put in to do the FAQs, the lightbulb pages, etc.

I really appreciate it.

Humidifier

Additional Comments: Cozy Hose, Hose Boss Management System, PapCap F Series

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