This is for John Fisher...Question for you...

[JohnBFisher]

... I was aware that ASVs were used more frequently...but not why. I assumed it was the ability for ASV machines to break up periodic and CS breathing. ...

I think you are correct. There is a growing body of evidence (use Google's Scholar search and "Adaptive Servo Ventilation" to find the studies. These show fairly conclusively that ASV units are more effective for the "average population".

... For me personally, the ST with O2 is working great, but my apnea isn't too severe. So are ST's going to become a thing of the past? ...

You raise a key point of any therapy. The unwritten rule for any diagnostician (regardless of the discipline) is to find the simplest answer that solves the problem. Doctors often quote "When you hear hoof beats, think of horses, not zebras". Why? Most of the time it will be a horse. A simple answer that covers most of the problem and solves the issue is *usually* the way to go. Keep the technology and solution as simple as possible. Thus, an ST unit plus O2 ... if it works for you ... is actually a better choice. KISS *always* wins. But if it fails to meet your needs, then the next step is to check for zebras. They cost more. Are more complicated (in this case to titrate and use). But we *know* they will work.

The issue (for the OP) is how long should it take to go from ST to ASV. It appears that in this case the doctor hung onto the "horse" diagnosis too long. It the patient returns and complains that it's still not working, going and doing more of the same is a definition of insanity. It's time to put away the hammer and hunt for the appropriate tool.

Just my opinion ... from being in exactly the same situation. It took me years to find a doctor that would treat my symptoms. They simply did not understand that they were not treating my problems. I literally broke down in tears before it got through. And then it took a neurologist trained in sleep medicine to understand that my neurological issues could cause the central apneas and that it could in fact be variable and much worse than during the sleep studies.

[jamiswolf]

Johnfisher wrote: Just my opinion ... from being in exactly the same situation. It took me years to find a doctor that would treat my symptoms. They simply did not understand that they were not treating my problems. I literally broke down in tears before it got through. And then it took a neurologist trained in sleep medicine to understand that my neurological issues could cause the central apneas and that it could in fact be variable and much worse than during the sleep studies.

Thanks John...and I can only imagine how frustrating it must have been to be suffering and unable to find the solution. I'm very sorry you had to go through that. But thankfully TMJTerri has some insightful guidance to allow her to forge ahead.
Cheers,
J

[TmjTerri]

I wanted to thank all of you who have asked questions and jumped in this conversation. One of the questions asked to me was if I am going to find out what machine I was tested on since it worked out so well for me. The answer is definetly YES! I am working on trying to get that info now. I went to my old sleep doctor many many many times and on each visit for over 1 year I kept telling him how horrible I was feeling and that I don't feel any better on the machine I have now. I don't know why I felt 100 times better during one night on the ASV machine then I did during the 1 whole year on the machine I have now. I was flipping out because it has been years since I have felt that rested and I woke up a bunch of times...but even still I felt so great. So I really do want to find out what machine I was tested on and hopefully get it. My new sleep doctor promised me that I would be able to get the new ASV machine before Jan 1st but they waited until the 29th of Jan to fax over the info to the DME and it was too late. The DME did not have the machine. I was beyond frustrated because on my 1st visit to my new sleep doctor on the 14th of Dec I explained that I needed to get all of this done before Jan 1st because my full deducible was paid and I would not have to pay anything for the new machine. But oh well, I am not going to get upset over something I cannot control. I am just happy that I actually found a machine that made me feel amazing even after 1 night. I will get the ASV it is just a matter of time. Any, John.. what does it mean when your sleep architecture is abnormal? And how long should a person be in REM sleep during the night? On the machine I have now my sleep architecture is abnormal even now and I do not go into REM sleep. Isn't that the point of getting a Cpap? When I called my old sleep doctor and I spoke to the RT she had NO idea what an ASV was. I had to literally spell out what ASV meant. That showed me that their office does not deal with this machine. But I am chugging along and will get my new machine soon. Thanks for everything!

[JohnBFisher]

... I went to my old sleep doctor many many many times and on each visit for over 1 year I kept telling him how horrible I was feeling and that I don't feel any better on the machine I have now. I don't know why I felt 100 times better during one night on the ASV machine then I did during the 1 whole year on the machine I have now. I was flipping out because it has been years since I have felt that rested and I woke up a bunch of times...but even still I felt so great. ...

I do know what you mean when you awaken feeling as if you had the curtain pulled back and are now able to ENJOY the day.

As a note on the machine. The diagnostic machine is not one that you will be able to purchase. But if you can find out if it is a Resmed or Respironics then you should be able to enjoy the benefit of that algorithm - if not the actual machine.

... But oh well, I am not going to get upset over something I cannot control. I am just happy that I actually found a machine that made me feel amazing even after 1 night. I will get the ASV it is just a matter of time. ...

Good for you. I am certainly sorry for this frustration. At least I feel your pain. But your attitude will allow you to get the most out of a bad situation. In the long run, the most important thing is to get a therapy that makes a difference for you.

... what does it mean when your sleep architecture is abnormal? ...

It sounds as if you have a lot of arousals during the night. This means that instead of progressing normally from one level of sleep to the next, your body constantly arouses you from a deeper level to a lighter level. This is one technique our bodies use to be certain that we breathe (when we fail to do so). This constant interruption means that we do not get the deep restorative levels of sleep. You had little to no N3 and REM sleep. This is indicative of problems with the sleep architecture.

By the way, failure to get REM sleep over a long period of time can lead to some odd problems. Before my diagnosis of obstructive sleep apnea (over 20 years ago), I actually reached a point where I would dream when I blinked. It's a miracle I did not fall asleep while driving and kill myself and someone else.

... And how long should a person be in REM sleep during the night? ...

Well, this is one case where your mileage WILL vary. Below is a diagram of the sleep architecture for a child, a young adult, and an elderly person. As we age the sleep architecture tends to 'degrade'. Lots of things contribute to that. Aches and pains. Sleep apnea. Needing to awaken to urinate during the night. You name it, it tends to cause us to awaken throughout the night. And that's pretty normal. However, in general you should reach REM sleep within the first 90 minutes to two hours of sleep.

... On the machine I have now my sleep architecture is abnormal even now and I do not go into REM sleep. Isn't that the point of getting a Cpap? When I called my old sleep doctor and I spoke to the RT she had NO idea what an ASV was. I had to literally spell out what ASV meant. That showed me that their office does not deal with this machine. But I am chugging along and will get my new machine soon. Thanks for everything! ...

Yes. It should help restore your sleep as close to normal as you can get it. The fact the old RT and your old sleep doctor did not know of ASV technology indicates to me that they have not kept current with the technology in their field of medicine. Going to a new sleep doctor was almost certainly the best thing you did. That is not to say your old sleep doctor is "bad". Rather, he can handle most of the cases he sees, but is not aware of new technologies and approaches to help those that he can not handle with conventional therapies.

I hope all goes well for you getting your ASV machine.

[Pugsy]

Hi Terri,
Just read your thread and I do remember your struggles. I am so happy that you are now on the path to actually feeling better. I just wanted to mention that if you end up with the Respironics machine that SleepyHead software will work with Respironics PR S1 ASV machines as well as the S9 version. These are the latest models.

If for some reason you end up with the prior model of the Respironics machine that uses the smart card and needs the DT 3500 Infineer card reader...Encore Pro or Viewer will work and I can help you with that software.

Hopefully you will end up with the newer model of whichever brand that uses the SD card for data and make your software choices much easier and those models do offer more data.

So SleepyHead works on both brands that use the SD cards (PR S1 and S9).
ResScan works on the S9.
Encore Pro or Viewer (which doesn't give flow and I wouldn't want it) works on the machines with the SD cards AND the older Smart cards. For the PR S1 ASV machines Encore Pro 2.5 is needed...I can help with that version.

Having used both brands of machines and all the software choices...SleepyHead is my preference but if you end up needing or wanting Encore....send me a PM and I can help with it.

[TmjTerri]

John.. Wow!! You know SO much it really amazes me. Thank you for ALL of your help. I typed out 5 of my sleep studies. I have 1 or 2 more but wanted to show you at least 5 of them right now. The Dec 21st 2009 was my 1st one since 1996. I am sorry if this is alot to read but as good as you are I am sure you are a fast reader..lol. At least I hope so. I don't want to bug you with all of this but you are SO educated on this subject I would love to know what you think about my sleep studies. Thanks SO much in advance.


January 14th 1996

Procedure: The overnight polysomnogram was performed recording the EEG (6), EOG (2), chin and legs EMG (3), EKG, respiratory airflow, thoracic and abdominal effort and oximetry.

Summary: Sleep onset latency is prolonged, and once the patient is asleep, there are some arousals and awakenings due to spontaneous arousals. There was a fairly normal sleep efficiency of 91%, however there was decreased REM sleep of 6% with prolonged REM latency of 242 minutes, normal slow wave sleep of 28%. There are very infrequent respiratory apneas not associated with snoring and not associated with oxygen desaturation. The saturation was maintained above 94% to 96% SaO2. There was a combined apnea/hypopnea index of 12.5 events per hour and an apnea index of 8.3 events per hour. The electrocardiogram demonstrated a sinus rhythm of the usual rate of 80 beats per minute and no significant extrasystoles. There are no periodic movements of sleep or EEG abnormalities.

Interpretation: The overnight polysomnogram demonstrated mild central sleep apnea with no significant obstructive sleep apnea. No significant oxygen desaturation. Nasal CPAP therapy would not be recommended to control this respiratory disorder. The cause of the patient’s morning headaches are not clear, though medication effects or caffeine should be considered.

*** I have a question about this first sleep study. Since I had a few central apneas is it possible that it could have gotten worse had I been tested on a cpap machine? Do you think my doctor at the time should have tested me on a cpap machine to see if I got worse or better or was my sleep apnea not bad enough to try me on it? I just don’t understand how I am so much worse now. I have had sleep issues since way before this first 1996 sleep study.********

My 1st sleep study since this 1996 study and this was with my old sleep doctor.


December 21st 2009

Sleep Parameters: Total study time was 372 minutes.; total sleep time was 280 min. Sleep efficiency was low at 75.4%. Sleep architecture was abnormal. Sleep onset occurred at 25 min.; REM onset occurred at 301 min. There was 1 episode of REM sleep lasting 12.5 min. The patient did not achieve stage N3 sleep. Sleep was fragmented due to intermittent arousals. There were a total of 7 arousals, 2 of which occurred spontaneously; 4 arousals were related to respiratory events. The arousal index was 1.7 events/hr. Snoring was noted. The patient slept in left and supine left-sided postures. Respiratory events occurred in all postures.

Cardio-Respiratory Parameters: Baseline oxygen saturation was 93%. Lowest recorded oxygen saturation was 81%. The patient spent a total of 214.6 min. below an oxygen saturation of 90%. Throughout the period of study, there were 27 hyponeas, 8 central, and 39 obstructive apneas. Mean duration of hyponeas was 31.1 sec. with some lasting 68.5 sec. Mean duration of central apnea was 17.4 sec. with some lasting 26 sec. Mean duration of obstructive apneas was 21.1 sec. with some lasting 40 seconds. Total Respiratory Index (RDI) was elevated at 15.8 events/hr. During REM sleep, the RDI was 38.4 events/hr. The apnea/hypopnea index (AHI) was 15.8 events/hr.

Cardiac Rhythm: There wee cyclic changes in heart rate. Heart rate was maintained in the 70s. No significant arrhythmias were noted.

Impression: Moderate Sleep Apnea Syndrome (780.53)

*******My 2nd sleep study with my old sleep doctor.


December 29th 2009

Sleep Parameters: Total study time was 411 min.; total sleep time was 374 min. Sleep efficiency was good at 91%. Sleep architecture was abnormal. Sleep onset was at 10.5 min.; REM onset occurred at 50 min. There was 1 episode of REM sleep lasting 15.5 min. The patient did not achieve stage N3 sleep. Sleep was fragmented due to intermittent arousals. There were a total of 23 arousals, 12 of which occurred spontaneously; 7 arousals were related to respiratory events and 4 arousals were associated with leg movements. The arousal index was 3.7 events/hr. Snoring was noted. The patient slept in the supine posture.

The study was initiated with CPAP at 6CM H2O and gradually increased to 12 CM H2O due to persistent respiratory events and snoring. Bi-Level ventilation was also initiated at 8/6 Cm H2O and gradually increased to 12/8 CM H2O. Baseline oxygen saturation was 95%. Lowest recorded oxygen saturation was 78%. The patient spent a total of 178.5 minutes below and oxygen saturation of 90%. Throughout the period of study, there were 60 hypopneas, 250 central, 1 mixed and 239 obstructive apneas. Mean duration of hypopneas was 18.6 seconds with some lasting 40 seconds. Mean duration of central apneas was 15 seconds with some lasting 33 seconds. Mean duration of obstructive apneas was 16.4 seconds with some lasting 37.5 seconds. Total respiratory disturbance index (RDI) was 88.2 events/hr. compared to 15.8 events/hr. during her baseline study. During REM sleep, the RDI was 69.7 events/hr. compared to an RDI of 38.4 events/hr/ during her baseline study. Due to the occurrence of frequent of central respiratory events, optimum pressure could not be determined. Cardiac Rhythm: There were cyclic changes in heart rate. Heart rate was maintained in the 60s and 70s. Mean heart rate was in the 70s. No significant arrhythmias were noted. Motor activity/Periodic Leg Movements: There were 7 PLMS episodes with an index of 15.4 events/hr.

Impression: Severe Complex Sleep Apnea
Periodic Limb Movement Disorder.

My 3rd sleep study is this one...


January 6th 2010

Results:

Sleep Parameters: Total study time was 350 min,; total sleep time was 298.5 min. Sleep efficiency was good at 85.3%. Sleep architecture was abnormal. Sleep onset occurred rapidly at 5 min. suggesting pathologic sleepiness; REM sleep did not occur. The patient did not achieve stage N3 sleep. Sleep was fragmented due to intermittent arousals. There were a total of 4 arousals, 2 of which occurred spontaneously; 2 arousals were related to respiratory events. The arousal index was .8 events/hr. Intermittent snoring was noted. The patient slept in the supine, supine left, supine right and upright postures.

Cardio-Respiratory Parameters: The study was intiated with bi-level ventilation at 8/4 cm H2O with a back-up rate of 10 b/pm and gradually increased to 30/25 cm H2O with a back-up rate of 10 b/pm due to persistent respiratory events and arousals. Baseline oxygen saturation was 91%. Throughout the period of study, there were 205 hypopneas, 174 central, 1 mixed and 62 obstructive apneas. Mean duration of central apneas was 15.1 sec. with some lasting 38 second. Mean duration of obstructive was 18.7 sec. with some lasting 38 sec. Total respiratory disturbance index (RDI) was 88.8 events/hr. compared to 15.8 events/hr. during her baseline study. Optimal pressure was not determined. Cardiac Rhythm: There were cyclic changes in heart rate. Heart rate was maintained in the 50s, 60s and 70s. Mean heart rate was in the 60s. No significant arrhythmias were noted. Motor Activity/Periodic Leg Movements (PLMS) No spontaneous leg movement activity was noted throughout the study.

Impression: Complex Sleep Apnea Syndrome

And then my doctor wrote that I had complex sleep apnea which is difficult to control with positive pressure therapy.

Then here is my last sleep study with my NEW sleep doctor tested on the ASV.

Diagnosis and Comment: 327.21 Primary Central Sleep Apnea, Severe

December 20th 2011

Method of study” Complete polysomnography with a digital seep system using the international 10-20 electrode placement for recording EEG (F3/M1, F4/M2, C3/M2, C4/M1, O1/M2, O2/M1), EOG, EMG, from chin, ECG, respiratory effort by inductance piethysmography, oximetry, body position, airflow (thermistry and nasal pressure), snoring sound, pulse rate and limb movement channels. The study was performed in a darkened room (low light video observation). The study was scored using the alternative AASM criteria for hypopneas. The attending physician below performed the epoch by epoch review of this study, formulated an interpretation (not 100% this is the word because my sleep study was faxed twice) of the study and directly participated in the preparation of this report.

Titration- Severe Complex Sleep Apnea. The patient was diagnosed with moderate sleep apnea with an AHI of 15.8 on a diagnostic polysomnogram on December 16th 2009. She was subsequently found to have complex sleep apnea on a CPAP titration study. She was retitrated with BiPAP 30/25 cm H2O with a back-up rate of 10 with persistent respiratory events with an AHI of 88.8 with 40% being central in nature. An ASV titration study was, therefore, performed with setting of minimum EEP=8 cm H2O, maximum EEP=18 cm H2O, minimum pressure support= 4 cm H2O, maximum pressure support = 15 cm H2O with a Respironics ComfortGel (petite) nasal mask and heated humidification. During the 437.5 spent at this pressure, the patient’s AHI was improved to 7.6 and oxygen saturation was maintained in the 89%. There was adequate REM supine time. The patient tolerated the ASV well and felt more rested after the study. Close clinical follow-up is necessary to assess patient tolerance, compliance and response to treatment. In addition, avoidance of sleep in the supine position, avoidance of alcohol and other sedatives, medical maximization of nasal airway patency (e.g. through use of antihistamines or nasal steroids as needed).

[Quincy52550]

John who is your sleep doctor? Where is he located? I would like to also see a neurologist trained in sleep medicine.

[JohnBFisher]

John who is your sleep doctor? Where is he located? I would like to also see a neurologist trained in sleep medicine.

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