We want to welcome all newcomers!!

This is the place to learn more about your therapy.

I didn't write the following definitions but "borrowed" them from another site. Snoredog on cpaptalk.com wrote these -- or at least posted them. I would like to give him credit for this wonderful list.

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.

Well - it's 12:30 a.m. and I can't sleep. Didn't use the machine tonight because it's been bothering me. I wake up in the morning and feel like my lungs are full of air. Is that common to feel that way? It's so hard to explain. I'm dreading going back to bed right now. Debating whether to try it again. Not in a really good mood right now. Sorry I'm venting.

Patricia,

I haven't experienced the feeling of lungs being full in the morning. It's possible that your pressure settings are too high. Do you have a data card that you can look at/share with us?

Mike

Is it your lungs or could it be that you are actually experiencing a stomach full of air that is pushing against the diaphragm?

I know that I experienced some of the air in the stomach and it felt like it was hard to breathe. Some find that it helps to take an anti-gas med and others do not find relieve in this -- so it is trial and error. Others find by raising the head of the bed helps. Raise it about 4 inches and see if that helps.

What is your pressure?

I'm not sure what it is. If I do have air in the stomach that might explain this feeling. I have an appointment with the Sleep Study team in March - they usually see me every 6 months. I use 3 pillow to help raise the head of the bed. My pressure starts out at 4 and goes to 9 and I don't think that is really too high. I just don't like the feeling I've been getting with the machine. I've been to a cardiologist and have had chest x-rays and a stress test and they were okay. I really need to start using the machine again because that is the only way I get a good night's sleep.

Hi Everyone!

I was diagnosed with Sleep Apnea March of 2008. At that time I was unsuccessful in completing the test with a CPAP due to the fact I freaked out with the mask on my face, I just could not do it. This broke my heart, as I really do struggle every day and night with my problem. This past August of 2008, I went back to the Doctor to see what else they could offer me, not surgery, and he suggested I take the machine home with me to try on my own for a few weeks, (not in a lab setting), were I would be more comfortable. Unfortunately, when I took the prescription to the Pharmacy, they required, $500 up front just for me to try the machine for 3 weeks! I do not have extra cash like that, but that is my deductible with my insurance. I know I am dying a slow death here, I am thinking about trying another pharmacy, a friend told me would work with me on a payment plan, but I am afraid they will think the prescription is to old? I cannot stay awake during the day, falling asleep at my desk on the job, falling a sleep the second I get still and sit anywhere! Cannot sleep at night, wake up constantly, even fall asleep sitting up right in bed, it is horrible. What other things can anyone suggest to help other than surgery and CPAP machines? My Doctors, both MD and Sleep Specialist, have no one they would recommend for surgery, seem to have a grim outlook on it. Any advice on things that would help? Thanks for reading.

Most of us have had to struggle getting our deductibles met in getting our treatment. My sleep study was done in 2007 and my insurance covered 80% after my deductible was met.

A suggestion would be to find a good used machine -- try craigslist, cpapauction.com, local flea markets, etc. Place an ad in your local paper -- there maybe one in your own community that someone will let you have cheap. You will still have to purchase a mask. These are not part of the cpap, but are purchased separately. You maybe able to find a set up for practically nothing up to a few hundred dollars.

I have been told that your script is good for life. Try the pharmacy that might take payments -- you might be surprised.

Good luck.

Does anybody else have trouble leaving their mask on for only 3-4 hrs at a time?
I have had my machine for well over a year and still cannot manage to keep it on any longer.

Hi all. I am new to this site, but have had sleep apnea for about 15 years now. Here is my story. Hopefully, this will help someone that is in the process of, or have been recently diagnosed.
I've used C-Pap for since 1995. My "Journey" to getting C-Pap was a 5 year ordeal. It started with just being constantly tired. Then I had a depressive episode in the fall of 1991. It lasted until I couldn't get out of bed one day the next June. I had to go on andidepressants. That made me feel better, but I knew that there was something still wrong. My best friend who was already using C-Pap, suggested that I get a sleep study and suggested his Doctor. I went for my first sleep study in 1993. He told me that I should be on C-Pap, but that my blood oxygen level had only fallen to 87% instead of 85%. (Thanks to a lifetime of not smoking and just damn good lung power) The GD insurance company wouldn't cover a C-Pap machine. Over the next two years I was tried on medication (Didn't really work) and a dental device to hold my lower jaw out and down. (My jaw ached and my teeth ached). None of that really did any good.
Finally in May of 1995, I had a sleep study that my blood oxygen level dropped to 85% and I qualified for a C-Pap machine. I went in for another sleep study a month later where I was tried on C-Pap. When I walked out of that lab the next morning, I felt like a cloud had been lifted that had hanged over me for years. Everything looked so sharp and clear, it's hard to discribe.
Over the next few months, I went through the usual adjustment period. I used the ramp function at first. I would wake up and find the mask off and I didn't remember how it got taken off. All the usual stuff of having to adjust to something strapped on to my face and head. Over time, I made the adjustment and I very quickly found out that this must have been the problem all along. My depression quickly went away for good. I threw away the pills and I haven't been depressed since. My heart palpatations disappeared, my hearburn and reflux improved and I didn't fight to stay awake at work every afternoon anymore. C-Pap was a godsend. I can't imagine being without it now. If for some reason I can't use it,(power outage) I feel like crap the next day.
I know that some people have a real hard time adjusting to it, but trust me, you can do it. The benifits are truely amazing. The damage that you are doing to your body, both what you can feel and a lot more that you can't by not doing anything about sleep apnea is life shorening. Getting on C-Pap may make certain other problems that you may have that you think have no relation to sleep apnea, suddenly go away. It is truely amazing the health benifits by getting on C-Pap and improving your health and longevity.
One more thing. I believe that more people need to use a chin strap than are given one. If you have a very dry mouth, or wake up to the sound of rushing air, then ask for a chin strap. It really does make a big difference.
Good luck.
Jeff D.

well said, Jeffrey. there's a newbie that just posted about some frustrations he's having, and i think this is just the inspiration he needs, at the time he needs it. i'll post it there.

Hello everyone, I stumbled on this site by accident today! I just wanted to vent some frustrations on people who may understand................I emphasise the word 'may', because so far it seems that people who are using CPAP generally feel better. Well, I don't. I hate the thing. I have been using my Resmed CPAP for well over 8 months, have tried three different masks and a multitude of different settings, and still it drives me mad. Every time I move (whilst asleep) the mask moves slightly, and air escapes, waking me up! If I tighten it I wake up with mask face and quite often a headache! You know pressure marks where the straps and mask were. A bit embarrassing if you have to go to a meeting first thing!! So it's either too loose or too tight, and I have spent days fine tuning the thing, there is no inbetween. Chin strap, no different! We have had to put a pillow inbetween myself and my wife, because when I turn over in the night she gets a cold blast of air from the mask! The specialist isn't covinced that surgery will fix it! I still feel just as tired as I always have! And it goes on.................
So what I would like to know is:
Can this thing be cured?
Will losing weight (I am 5'10" and 210lbs) solve the problem?
Is there some less visible method of treatment?

Tim What you are feeling is pretty common. For many of us it takes several months to adjust to therapy. I know you state you have tried three different masks. The masks is probably the main key in effective therapy and comfort. In my opinion, you haven't found THE mask that best suits your needs. I tried more masks than you can imagine -- I have a list on another post I made and it probably has over 10 different masks on it.

What types of different settings are you talking about? Settings on your masks or machine?

What is your pressure?

Which mask are you using now?

The different settings are on the machine. I've tried without settling time, with settling time, lower pressures, and so on.... At the moment I am using a minimum pressure of 5 and 16 max pressure. I have a mirage quattro full face mask. I have tried the little nose mask (can't remember what it was called) and the mouth mask that has the two nostril thingys! I don't have a dry mouth issue, but I have a humidifer if needed. I just hate the idea of the thing, I can't snuggle up any more. I quite often find I will stay awake until my wife is sound asleep before I mask up! I really want an alternative....if there is such a thing.

Tim,

Please find my responses to your questions interposed below in CAPS:

So what I would like to know is:
Can this thing be cured? NO. ANYONE WHO TELLS YOU OTHERWISE IS MISINFORMED/LYING/TRYING TO SELL YOU A BILL OF GOODS
Will losing weight (I am 5'10" and 210lbs) solve the problem? NOT LIKELY IT WILL WIPE IT OUT, ALTHOUGH IT WILL CERTAINLY HELP
Is there some less visible method of treatment? SURE, ORAL/DENTAL APPLIANCES WORK WELL FOR SOME WHO CANNOT TOLERATE CPAP. WE HAVE A FEATURED MEMBER HERE WHO IS A DENTIST WHO MIGHT BE ABLE TO GIVE YOU SOME OPTIONS

Thanks for the quick response............hmmmm dental...........I've seen Sha's photos and commentary. sheeesh! Maybe I'm not that desperate! I was hoping to buzz into Hospital, quick op and go. Job done!! I see a re-think coming on.

with surgery, yeah, that kind of pain would probably have me crying like a little girl for weeks. i don't know how sha did it. you and the dentist have a good talk coming on, methinks.

Tim, have you tried nasal pillows. I know someone that has great luck with those. I do know about the wife thing. It took me a while to let her see me wearing it. I got married already using C-Pap, so she has never known me without it. Funny thing was that she too had symptoms and I convinced her to go for a study. Now the both of us go to bed with the Darth Vador look going on.

I use the nasal pillows and like them a lot better because I don't feel so confined. I usually last about 5 hours at the most - but it's a lot better than not using it at all. I go for my 6 month checkup this month and am looking forward to them reading my machine.

Hi,

I'm new to the group and have an obstructive sleep apnea. In my opinion I have severe daytime fatigue primarily in the morning but am frustrated with my ENTwho does not want to pursue a sleep study.

I had sinus surgery 5 weeks ago and she wants me to follow up with her in June after the allergy growing season. Meanwhile I am struggling driving to work in the morning. I'll gladly take a C-Pap machine if it will help.

Hi ,i am new to the group,my husband of 30 years im sure has sleep apnea,he has been in denial for over 2 years now and it is starting to affect us greatly,he only has to sit down and he is asleep,he cannot drive very far,he has agreed to go to g.p next tues,but i will insist he is referred to a sleep clinic,his manager at work has noticed hes inability to stay awake,and family also,our lives are limited as he cannot stay awake,he snores dreadfully and always has adry mouth and headaches,we have private healthcare so hopefully diagnosis will be quick,i have found this site very helpful ,i will keep you posted,

Thanks to Mike for finding me on Twitter and introducing me to this forum. I've had my machine for 4 nights now. I can fall asleep with it on but I inevitably wake up to leaks. Part of the problem is that I'm used to sleeping on my side, and I have to readjust the mask when I roll over. I'm very stubborn so I'm sure I'll get this figured out. Even though I haven't been using it long or all night, I can tell it's making a difference already.

What Every Apnean Should Know

FOOD FOR THOUGHT

After your sleep evaluation study did anyone set down with you with the printed results and explain them to you? Did you want them to?

After your xPAP titration study did anyone sit down with you with the printed results and explain them to you? Did you want them to?

Were you given a printed copy of your results with graphs (5+ pages) or just the doctor's dictated report (1-2 pages) or neither?

Do you know what an xPAP is? An APAP? A VPAP? A Bi-PAP?

Do you know the brand and model of xPAP machine you have?

Do you know the type and name of the xPAP mask you are using?

Do you know what your xPAP pressure is?

How many masks did you take home and try before you found THE one mask that was comfortable and relatively leak free?

How long have you been using this mask?

Have you gone back to your DME supplier for advice or assistance with your xPAP therapy?

Have you contacted your sleep lab or sleep doctor for advice or assistance with your xPAP therapy?

Do you feel you've gotten good service, advice and assistance from your DME supplier?

In what way could your local DME supplier be or have been of more assistance?

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In what way could your sleep doctor or sleep lab be or have been of more assistance?

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Did you have any problems navigating the Doctor/Insurance/DME minefield?

Have you visited any online sleep apnea support forums?

Which online sleep apnea forums have you visited?

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Which online sleep apnea forums do you prefer and would recommend to others?

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Do you look for the HON code at the health websites and forums you visit online?

hi, i just happened upon this site today. i was diagnosed with severe sleep apnea in july. while i am not pleased with my new lifetime bed "partner", i realize how life saving/enhancing the CPAP is. i am divorced and have just ended a long term relationship with a man who had a CPAP machine as well. it was an easy entry into being "seen" with my mask, as he had been a longtime user. now being newly single, i dread having to introduce this to another man. it is making be relationship shy. also is it necessary to use the demineralized water as prescribed and any time saving cleaning tips thanks, ivy.

here are some CPAP cleaning tips for ya.

Hi Ivy--boy, I can really relate to the relationship-shy business. I'm single--the guy I was seeing when I was diagnosed broke it off when he I told him I wouldn't be able to camp or hike this year, but thought I would be able to next year. Cretin!! Anyway, since then I'm pretty gun-shy about even telling anyone about it. I haven't figured out how to go about it yet....

Susan McCord

Paula--sounds like your husband has classic apnea symptoms to me....glad you're pushing him in the direction of sleep study. He'll thank you later!

Susan McCord :-)

Jennifer--glad to hear you've been able to start right up with your CPAP. That's great!
Re: cleaning, there are a # of ideas about it on SG. I've had really good luck with using Dawn Original dishwashing soap and warm water. Bathroom sink, sink hose and soak it for a little bit--meanwhile I hold my mask by the headgear and swish it around in the warm suds for maybe 2-3 minutes, then rinse it well, dry it with Kleenex
and set it on a towel to dry (clean stuff in the a.m. so it'll have time to dry). Then I go back to the hose and swish it a little and then hold it under the bathtub running warm water until it's well rinsed. Hang it over the shower rod to dry.

Re: humidifier water--I started out using purified water--it began leaving residue after a couple of months, which I removed by filling it up with warm water and white vinegar and letting it soak for quite a while. Then rinsed it, a LOT, and it came out good as new. It needs to be dry to put it back in the machine, so do that in the a.m. as well. Now I'm using distilled water like I was told in the first place!!! No residue to date.

Check your filters once a month. The foam one can be squeezed through the same soapy water when you're doing mask/hose. It takes very little to was that foam. Let it dry. The white filter should be changed if it's discolored at all.

I thought all the cleaning was gonna be a pain in the ass, but it really isn't a big deal. Don't use bleach. Don't use antibacterial soap of any kind. I did that and learned the hard way. Also created a stir on SG!!!!

Susan McCord :-)

Hey, Steven, kudos to you for shaking the bushes about trying to stay healthy. And alive! Sometimes, actually often, MDs don't take the exhaustion issue seriously. Several of us on SG have had that experience. For me, it was process of many years of going in with c/o exhaustion and being blood-tested and anti-depressant'd ad nauseum. I had no clue and neither did the MD. My cardiologist was the one who finally got me sent for a sleep study. So if you're concerned, keep on after 'em! It's YOUR life that may be at stake!!!

Susan McCord :-)

For over a year I have been suffering with exhaustion, daytime sleepiness and taking frequent daytime naps. My physician just recommended an extra cup of coffee in the afternoons at work ! I have GAD and take Paxil, I would have to check in with him every 3 months while taking the Paxil. At every appointment I would complain that it was not getting any better. I was literally sleeping my life away and I wanted to know why. Blood tests revealed nothing-all was normal. My Ob-Gyn ran my hormone levels-all normal. Finally he recommended a Pulmonary doctor, I had an overnight sleep test, 2nd overnight w/CPAP test and the CPAP was a complete failure. My RDI was 14.1 with CPAP, I woke up as many times with the machine. The doctor said it would not benefit me. He suggested the 3 most common surgeries and said to get back to him. I am not comfortable just jumping in to a surgery without a 2nd opinion. I have an appt with a new doctor on the 24th. I am 49, 5'3" & 116lbs, ( no children at home) I do not fit any of the profiles of OSA. My biggest issue right now is the depression that this OSA is causing. I hate my life, or should I say, lack of a life. All I do is sleep. Has anyone found help with anti-depressants, even just short term ?? I cannot stand to live like this much longer.

I know the feeling of how depression and sleep apnea go hand in hand. Antideppressents will help in the short term. That is what it took to get me out of bed and back to work. However the sleep apnea needs to be adddressed. Surgery is definately a last resort option. I would seek out a doctor that specializes in sleep apnea and explore the other c-pap options. There are many other options besides just a nasil mask for it. I personally use a full face mask and am happier that I ever was with the 15 years of the nasil mask. I wish I'd known about that years ago.
Don't think that you have to meet certain criteria to have sleep apnea. There are many other causes than just being overweight.
Good luck. and keep us informed on your progress.

Thanks Jeffrey for replying. I am going to a new doctor that specializes in Sleep Apnea on the 24th. I am so discouraged by the attitude of the 1st doctor I saw, or should I say the 3 doctors I saw. I never saw the same one in my 3 visits to this office. I got the feeling that this was not their primary focus at this practice. I have educated myself through websites such as this one and have learned so much. I am grateful you are all here to help. Thanks.

I am glad to find this new users forum as I have been totally lost since being diagnosed about 2 months ago.

I have literally dragged myself through life since 18 years old (and a bad case of Mono). Any mention of the extreme fatigue brought no suggestions from doctors so I stop telling them. I did mention it to my doctor in
February and he suggested testing for sleep apnea. I thought "how crazy". I do not snore, not out of breath in day or doing anything strenuous. In an overnight hospital sleep study and home finger monitor test, they found I have central apnea (never heard of it before then). I drop to about 82 sats only a few times per night but have very little rim sleep.

I am now on an O2 condenser set at 2 lpm with nasal cannula. The first week I felt so great, I thought I had finally been given back a life after 40 years of exhaustion (and with it comes depression if I got too overtired).

Well, my excitement was cut short as after that first week I have slowly been losing ground and returning to my previous daily exhaustion even
though I am using the machine every bed time 8-10 hours as prescribed. I have talked to Respiratory tech to see if increasing the O2 level would help but
another finger monitor test in which I was told it looked like the monitor fell off once (not possible with the amount of tape I had on it) and 2nd night nasal
cannula must have come out....which I believe I would have remembered replacing it.

So everything looks fine to them even though I am feeling horrible.

What to do? Has anyone else had similar?

I am to the point where I feel worse with the O2 as just want to sleep and cry through the day. Before I ever started it, I had to take a 2 hour nap everyday to get through but I didn't feel like it was the end of the world
every moment of the day and I could be somewhat productive during about a 5 hour time span with naps.

Please, if anyone has some experience or ideas of what might be happening with the O2 first working so wonderfully and now making me feel more miserable
than ever, please help. I just don’t know how I can keep going through day after day of this misery.

Claire, please talk to your doctor (a sleep doctor) about the continued lack of improvement in your symptoms.  If you are not using a machine (besides O2) for your central apneas you may need something called an ASV machine which senses lack of respiratory effort and assists your breathing until you resume normal respirations on your own.  Unless your central apneas were very minimal, they should be treated.  Regard my advice as coming from a layperson, not a sleep specialist.  You should feel the improvement you felt the first week consistently.  Keep us posted and good luck.

Claire, I forgot to say it takes some of us longer than others to experience contined improvement  A few people never get over that daytme sleepiness.  I am one of those and take Nuvigil for wakefulness.