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jewelsav

jewelsav
Joined Feb 2022
Bio

San Francisco Bay Area

jewelsav
Joined Feb 2022
Bio

San Francisco Bay Area

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, 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!

Time for an Update...

CPAP THERAPY

As you suggested @Sierra, I made a change on Mar 17 from Min/Max 8.8/10.6, EPR: Ramp to Fixed Pressure 10.4, EPR 1. After 1 week, AHI, OA, H and R are all down significantly. Yippee!! But CAs are up slightly. So, for the next week, I will try lowering the fixed pressure to 10.2, while maintaining EPR=1. See https://docs.google.com/spreadsheets/d/122kA5EJiwUXKilxmQYR6FRRvGxNRau7Tufwssk3-Etw/edit#gid=0 for details.

AHI down from 5.16 to 2.50

OA down from .48 to .37

H down from 2.14 to .77

R down from 1.91 to .53

CA up from .63 to .87

SLEEP QUALITY

Fortunately, my jumping out of bed like a ninja, and screaming like i'm in a horror movie have ceased. My parasomnia diminished to speaking in a conversational tone, my not waking up, and having no recollection of dreams (my husband reported the events). Then, at least for a week, all these events have disappearing altogether. We purchased a Wyze outdoor camera for ~ $35, mounted it with a wide angle view, so for the next few weeks I can see if I have sudden movements or outcries. I expect these behaviors/vocalizations may appear from time to time, but this is a vast improvement over events happening 2-3x/week. I had a preliminary diagnosis of RBD, but it (hopefully) will turn out to be pseudo-RBD with parasomnias brought on by sleep apnea and long term sleep deprivation.

I still wake up 2-3x/night, and get only 5-6 hours of sleep/night. I am waking up a tiny bit more refreshed. From reading others' experiences on this forum, I figure it may take weeks to months to feel less tired. Any suggestions are welcome.

DEALING WITH $#@&

My (excellent) sleep doctor referred me to a movement disorder neurologist within the same health organization (Stanford) to run some tests to determine if I have RBD. It took 3 weeks for the Stanford neurology department to decline the referral and tell me to contact them again in December 2022, at which time they "may or may not" schedule an appointment for me sometime in 2023. I emailed my sleep doctor and asked for a referral to UCSF (US News & World Reports rates the UCSF Neurology department #1 in the US). My dr's admin assistant (without even showing him my request) emailed me back that Stanford has a policy of not referring patients outside their system. Fortunately I had a zoom call with my dr yesterday. He was dismayed that there's such a policy (if there even is one, since he's never heard of it), and said simply "Why would I do that?"

Between the time I heard back from the ding-a-ling assistant until I saw the dr, I asked my primary care physician to make the referral, which she did within 24 hrs. As it turns out, my sleep dr and the UCSF neurologist are good friends and did their sleep fellowship together. My dr highly recommends the neurologist. He offered to pick up the phone and call her then and there to make the referral, if I wished. He lamented, "We both work for organizations with a lot of bureaucracy."

So while I feel I am in good hands both with the sleep dr (who gave me his direct email for future communication) and the neurologist, roadblocks and obstacles continue to suck the energy out of me on my journey to get a good night's sleep.

Another energy-drain is the DME. I have asked for six weeks for nasal cushion replacements for my Airfit N30i mask, which should be replaced every 2 weeks. I finally raised my voice, and was told they weren't in stock, the DME would have to order them (wouldn't give me a time estimate), and then they would have to go through the usual shipping channels (+1-2 weeks). Then I raised my voice even louder, screamed a bit, and lo and behold, the nasal cushion replacements arrived 3 days later. With the old cushion, I was experiencing a sore throat and headaches. I used a new cushion last night - woke up just fine.

Thanks for allowing me this one-time rant. I realize everyone on this forum has stories like these and worse. Why does it have to be this way? Sigh. I'm just so awfully tired of these nuisance roadblocks. This has already been a 3-yr journey to get to this point - I won't bore you with the details. But now I have the finish line in sight, thanks in part to the help you have generously and compassionately given me. I am truly grateful.