still struggling after years of treatment

[JZ]

The only other medical diagnoses I've had are mitral valve prolapse and moderate scoliosis.

dreamofsleep,

Have you given any thought to whether your mitral valve prolapse contributes to your exhaustion. I have no medical expertise, but have been living with mitral valve prolapse for 57 years and have experienced low energy and fatigue for most of my life. An interesting book on MVP written by a cardiac nurse is Confronting Mitral Valve Prolapse Syndrome by Lyn Frederickson.

http://www.amazon.com/Confronting-Mitra ... 0446394076

While the symptoms and issues Ms. Fredrickson discusses in the book did not all apply to me, enough did that I came to believe that MVP plays a role in my fatigue. When I have asked doctors, including one cardiologist, whether fatigue can be caused by MVP they vigorously denied it and several asked where I got that information. Perhaps it is double secret information that cannot be trusted in the hands of us lay people.

Ms. Frederickson suggests that people with MVP can achieve some symptom relief with exercise and good nutrition (damn, I just wanted a pill).

While cpap has not given me the level of energy I would like to have, I do have a significant level of improvement. You have gotten some good suggestions from forum members that you can try related to your cpap therapy. If you don't have an exercise regimen I would recommend you consult your physician to determine what exercise would be appropriate for you.

[Snoredog]

If you add that 17 per hour spontaneous to your existing AHI you are probably in the severe range while under treatment. Your titration table shows you got some REM at 8 cm or higher pressure with longer periods at 9 and 10 cm.

What some of that means, note the Normal Sleep Architecture, you don't appear that far off from Normal:

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.

===================

as for the PB425? That is a manual Bilevel machine with no data recording ability. According to Dr. Krakow that machine is the only one they found ideal in titrating for UARS and you cannot do it yourself, titration has to be done in a lab equipped for titrating UARS like Standford Sleep Center, may be other sites I just don't know who they are.

What is so special about it? Believe it has parameters like the 420e that can be tweaked and it doesn't have the programming restrictions or rules some of the other Bilevels/Bipaps have.

My understanding after reading a few papers on it, titration is same as usual with EPAP and it is slowly increased until OSA apnea is eliminated then IPAP is increased somewhere in the range of 8 to 10 cm higher until all flow limited or restrictive breathing is eliminated and those spontaneous arousals go away and/or they become a misnomer.

But you have to buy a book to find out more about it, you might ask around some of the others here purchased the book.

The problem with UARS is most insurance still don't cover it, so you have to be careful saying you want a PSG and titration for UARS, payment may just be out of your own pocket if you do that.

[SleepGuy]

Wow, thank you so much! *** I feel like I'm starting to get somewhere now! Thank you - much more helpful and accessible than my doctor or DME!

Wasn't it just a few days ago that a certain Troll said this site should be taken down because of bad advice? LOL!!!!

Snoredog, Den, JZ, and others on this thread: You Guys Are Awesome! What a fantastic resource you've been to our new board member who has gotten absolutely nowhere with his DME, therapist, and doctor (in fact, they set him up wrong, it turns out!).

[dreamsofsleep]

JZ, yes, I have considered that MVP might contribute to the fatigue and have seen some information on that out there, but I've had a similar experience to you with doctors telling me it shouldn't cause any symptoms, etc. I think I mentioned it in my original post because on some level I am open to the possibility of it causing some of my symptoms, but with doctors telling me it shouldn't, I needed to hear it from someone else. So, thank you. I will do a little more research on that.

Snoredog, thanks again for all your helpful info. Do you or does anyone else know what the name of the book on UARS is called? I haven't ever been able to find too much information on it. Is the PB425 titration for UARS usually done with the esophageal pressure monitor in? I have to admit I'm terrified of that. Anyway, I will look into more on UARS, as well.

SleepGuy, I agree! However, I think I was a little harsh toward my doctor and DME. DME turned out not to have set up my machine wrong; however, they told me they had when they hadn't, so that wasn't so reassuring, and I've had some other problems with them, too. My doctor is nice and willing to work with me to some extent; however, he really just wants to prescribe me Provigil, and he also isn't that familiar with UARS and the causes of spontaneous arousals, etc. I do feel like I can get much more information here. So thank you all! Oh, and by the way, SleepGuy, I'm female, but I guess you would have had no way to know that

[Snoredog]

[quote="dreamsofsleep"]JZ, yes, I have considered that MVP might contribute to the fatigue and have seen some information on that out there, but I've had a similar experience to you with doctors telling me it shouldn't cause any symptoms, etc. I think I mentioned it in my original post because on some level I am open to the possibility of it causing some of my symptoms, but with doctors telling me it shouldn't, I needed to hear it from someone else. So, thank you. I will do a little more research on that.

Snoredog, thanks again for all your helpful info. Do you or does anyone else know what the name of the book on UARS is called? I haven't ever been able to find too much information on it. Is the PB425 titration for UARS usually done with the esophageal pressure monitor in? I have to admit I'm terrified of that. Anyway, I will look into more on UARS, as well.

SleepGuy, I agree! However, I think I was a little harsh toward my doctor and DME. DME turned out not to have set up my machine wrong; however, they told me they had when they hadn't, so that wasn't so reassuring, and I've had some other problems with them, too. My doctor is nice and willing to work with me to some extent; however, he really just wants to prescribe me Provigil, and he also isn't that familiar with UARS and the causes of spontaneous arousals, etc. I do feel like I can get much more information here. So thank you all! Oh, and by the way, SleepGuy, I'm female, but I guess you would have had no way to know that

[SleepGuy]

Oh, and by the way, SleepGuy, I'm female, but I guess you would have had no way to know that

I wondered if I was going to step in that one. It should have been "s/he" but I didn't bother to go back and change it. Glad to hear you're getting some help--from everyone.

If you missed the Troll, there was a thread not long ago where someone came on bashing all of the bad "medical" advice being given and urging people to ignore the boards and trust their DMEs, doctors, and therapists to solve all of their problems.