jewelsav

Thank you for this helpful warning, Sierra.

Quick question - which fine aftermarket filters do you use? Do you order online? Thank you.

During a recent sleep study I was presented with a few masks. I opened the package and examined, but did not try on the ResMed AirTouch F20 for Her, Small. I selected another mask. The technician told me to take them all home.

If you would like this full face mask and headgear, I can ship it to you for $16.10 (USPS flat rate), or if you are in the SF Bay Area (Sunnyvale in the South Bay), you can pick it up.

You can PM me at jewelsav07@gmail.com.

Thank you Biguglygremlin! This means a lot coming from you. Thank YOU for sharing your experiences. My heart goes out to you. You have inspired me to stick with CPAP therapy, despite large and small obstacles. Wishing you well.

May 2022 UPDATE

It's been 2 months since I last posted. I've kept the same settings for 60 days and have had good results.

AHI: 2.4 (even had one night AHI=0.90!)

Large Leak: <2.0%

% Minutes in Apnea: < 1%

Sleep Efficiency: >90%

Sleep Latency: <9 minutes

I feel rested when I wake up, even though I'm still averaging just 6 hrs of sleep. Most importantly, I've only had 1 parasomnia event in a month vs 9/month when I started CPAP 2 months ago.

I credit these results to the advice and guidance I received on this website, particularly from Sierra. I feel like I've got my life back. Thank you so much!

Can anyone recommend a CPAP supply source, which accepts medicare, that sends the correct quarterly supplies out quickly and efficiently? Without exaggeration, I have had to call my current supplier at least 6 times for each resupply order, which delays delivery by weeks.

Thanks so much.

Thank You!

I've been using CPAP for 3 months and rigorously recording my progress from Oscar data every morning. I've read as many posts on MyApnea as possible, but I still have questions about some of my Oscar charts. Please refer me to another thread if this topic is already being addressed. If not, I'd like to start a thread about Oscar patterns and anomalies.

Can someone explain the peculiar pattern "blackout" from 22:57 to 23:00, and the peculiar pattern of little towers from 23:00 to 23:10?

Thank you!

Thank you @RayRBD for your thoughtful response. I was originally going to wait until I had 2 months of data, but will post my very preliminary results now.

I started taking ashwaghanda 2 weeks ago. [Douglas Laboratories, Ayur-Ashwagandha, 300 mg, 1 capsule/night, 1-2 hrs before bedtime, $20.80 for 60 capsules.]. It can take up to 2 months to see the full effect. So far...

• AHI ~ 3.0

• 8/14 nights slept >7 hrs vs avg 5-6 hrs

• 12/14 nights woke up 2x/night vs 3-7x/night

• 14/14 nights longest period of sleep >2 hrs (average: 2.66 hrs) vs avg 1-2 hrs

• Time to fall asleep ~ 7 min vs avg 8 min (about the same as before)

• 0/14 nights RBD behaviors, movement or vocalizations, vs ~2-3 significant events/week (screaming, hurling self out of bed)

• Waking up relatively refreshed vs feeling run over by a truck

• No side effects

CAVEAT 1

There’s no way to separate the effects of ashwaghanda from the cumulative effect of being on correct CPAP therapy for one month. I may be predisposed to wanting ashwaghanda to work. But my skeptical husband noticed a difference immediately, and my sleep doctor did not believe the results were solely due to CPAP therapy.

It's possible that I had/have pseudo RBD due to long term sleep deprivation. It's also possible getting more REM sleep as a result of starting CPAP was responsible for the recent greater violence and greater frequency of RBD type behaviors I experienced before I started taking ashwaghanda. Time will tell.

CAVEAT 2

My highly trusted integrative physician recommended ashwaghanda for my sleep disturbances. This is a supplement which you don't need a prescription for. Supplements are not regulated, so quality can vary wildly. Douglas Laboratories is a very high quality firm, and it has the highest percentage of the active ingredient (7% withanolides vs 1.0-1.5% in other brands) of the ashwaghanda supplements I've seen. As with any therapy suggestion, please do your own research if you are considering taking this supplement. I'm not a medical professional, and I have only presented the experience of 1 patient (me).

@MattK, On another note...

I've had 2 in-lab sleep studies. I slept for 20 min and 3 hrs, respectively, but never got into REM sleep. Since it's unlikely that I would get into REM sleep in a 3rd sleep study, we set up a Wyze outdoor camera which has excellent night vision capability ($35) in the bedroom so we can record big sudden movements, jumping out of bed, or vocalizing. I can then scan through the video footage, take snippets of events and share with the neurologist when I meet with her.

If you have no difficulty getting into REM sleep in a sleep study, no need to go to this trouble.

@MattK, I'm no expert, and I'm only 1/2 step ahead of you, asking the same questions about how to find and secure an appointment with an RBD specialist. Here's how I'm approaching it.

1. US News and World Reports annually publishes hospital rankings. Here are the top hospitals in neurology. I live in the San Francisco Bay Area, so I was lucky that UCSF was #1. If I wasn't, I would have seriously considered a trip to Johns Hopkins, the Mayo Clinic or a few others that specialize in out-of-town consults.

2. I looked up the credentials and specialties of all 120 UCSF neurologists. I found Dr Rafael Zuzuarregui, who practices medicine at the intersection of sleep disorders and RBD.

3. I emailed my sleep doctor at Stanford to refer me to Dr Z. If all had gone smoothly, my sleep doctor would have reached out to Dr Z, with whom he did his sleep Fellowship, and whom he highly recommended. But my sleep dr's admin assistant didn't even show him my request and said Stanford doesn't make referrals outside their system. (Turns out Stanford has no such policy.) So, I asked my primary care dr to make the referral. I supplied my PCP with case notes from my last 2 visits to the sleep doctor, and the results of 2 sleep studies, which she then faxed to UCSF along with their referral form.

4. There's an unpleasant gate keeper, the "patient coordinator" at UCSF who rudely turned down my request for an appointment with Dr Z. When I asked why, and what the criteria for being accepted were, she hung up on me. But, before she hung up, she said she had referred me to another neurologist, though did not specify a name. This seems to be her modus operandi, as she is cited by name in Yelp and Healthgrade reviews as being quite rude to other prospective patients. Throughout the process of getting a referral, I have kept the end goal in mind and "not stopped for every barking dog".

5. I heard back within 1 business day from Dr Liza Ashbrook's office, the neurologist I was referred to. This 2nd patient coordinator was incredibly professional, efficient, pleasant and empathetic. Dr. Ashbrook will perform whatever tests are necessary to determine if I have RBD. Dr Ashbrook also was in the same fellowship class as my sleep doctor, and he highly recommended her. My appointment is in Sept (6-month wait), but am on the cancellation waiting list and may get an earlier appointment.

There's probably a long wait time everywhere to see a specialist. I was originally referred to the Stanford neurology dept (from the Stanford sleep department), but they were even ruder, took 3 weeks to completely reject my sleep doctor's referral, and said to call back in Dec, 2022 to see if there might be appointments in 2023.

So, you might have some luck finding an RBD expert at a hospital with an excellent neurology department, located close to you.

Wishing you good luck!