Note: This post may contain statements that I no longer consider true.
See: The Vivos mRNA Appliance Didn't Improve My Obstructive Sleep Apnea.
It’s been six months since I started wearing my Vivos mRNA Appliance, so it’s time for another update. The summary is that there doesn’t seem to be any impact on my CPAP pressure yet but my AHI is steadily dropping. I feel a bit less fatigued and don’t often feel sleepy during the day now, but I wouldn’t say I feel great yet. This treatment takes a long time.
I’ve expanded the upper appliance a total of 6.5 mm sideways and advanced 5.8 mm forwards, and expanded the lower appliance 5.3 mm sideways and advanced 6.5 mm forwards. I haven’t been advancing the upper appliance forwards this month due to a sharp part it digging into my front upper palate, and decided to wait until my monthly appointment to get it adjusted. I suspect that taking short breaks like this makes very little different in the long term since even wearing the appliance without expanding it probably gives the jaws time to consolidate the gains made so far.
My appliance usage is averaging just over 16 hours/day, but I’ve stopped wearing the facemask with it during sleep because my daytime fatigue and flu-like symptoms were getting worse. I also stopped wearing the pulse oximeter for the same reason, having collected enough data to see that my blood oxygen level doesn’t drop significantly. I’ll try the oximeter again when I get rid of the CPAP machine but it won’t reveal hypopneas that arouse me from deep sleep anyway, which is what my sleep study showed.
Here’s my usage graph so far:
A few people have asked me how my AHI has varied since using the Vivos mRNA Appliance. I don’t normally look at this since my CPAP machine is trying to keep it as low as possible, and I figure the pressure required to do that is more important. Here’s the data from OSCAR for the last 6 months:
Most of my apneas when using CPAP are central (shown in purple on the AHI chart), with only a few hypopneas (turquoise) and rare apneas (dark blue). It’s hard to see an overall trend in the OSCAR data since it’s so variable, so I added AHI to my monthly pressure trend analysis charts. Here’s this month’s CPAP pressure trend analysis:
The median pressure is flat but unfortunately the peak pressure is going up again after having come down last month. My AHI is also increasing.
Here’s the overall CPAP pressure trend, with AHI, Hypopnea count and Obstructive Apnea count:
The long term trend in my AHI is downwards (good), while the pressure required to maintain it is slowly rising (bad), and while my H Count (hypopneas) is falling (good), my OA count (obstructive apneas) is rising (bad).
At this point it’s possible that the mRNA just hasn’t expanded enough yet to make a significant impact on my airway given that my sleep apnea was severe on my last sleep study. I wish I had better news at this point, but only time will tell over the next 18 months whether I’m going to be able to dispense with my CPAP machine and be able to sleep naturally again. For the time being I think I just have to stick to what I’m doing and be patient with the thing.
30 Comments
Lauren Thurlow · April 30, 2021 at 11:56 AM
Looking forward to your next update! ? Hope you are feeling well.
Greg · April 23, 2021 at 5:12 AM
Hey Graham, started a more in-depth study on cpap, and also setup Oscar. Tried my first cpap night in years (had mild/moderate level way back in sleep study and was waiting for new solutions to come along – like Vivos – because cpap really tough for me)… So I used Dreamwear pillows and it didn’t go too well – still kinda hurt my nose and felt lousy afterward… also checked Oscar…my AHI was 16+ but ALL from Central Apneas – no leaks. Pressure range only 5.6 and 8.2. This really concerns me… I didnt have any Centrals in my sleep study many years ago. Then I see your CA’s as well almost about the same.
1) What’s your plan for addressing your Central Apnea? How come no ASV machine?
2) Did you also not use cpap for a long period of time while having your apnea condition? (I’m wondering if the brain could start doing central apnea behavior as a response if apnea is not addressed over a long period.)
3) Curious – ever try out the novel Bleep Dreamway mask approach?
Graham Stoney · April 23, 2021 at 7:17 AM
1) Like you, I had no central apneas on my sleep study; they are largely induced by CPAP. My plan is to get rid of the f@%#ing CPAP machine so I can get a decent night’s sleep naturally. I have a suspicion they may be worse under times of emotional stress, although I can’t say for sure. They have been reducing over time though so I don’t really worry about it. I just focus on using my DNA appliance… and hopefully ultimately kicking CPAP to the kerb. I see that ResMed have a dedicated machine for ASV, so apparently my Airsense 10 Autoset can’t do it. My machine already reduces the pressure when I exhale and I don’t know how ASV differs from that.
2) My obstructive sleep apnea went undiagnosed for at least 10 years; probably 30… all the way back to the extraction/retraction orthodontic treatment, which is when the migraines started. So yes, possibly.
3) No, I hadn’t heard of it until now and haven’t tried it.
Greg · April 24, 2021 at 12:51 AM
Interesting. ASV tries to add pressure and force breathing during centrals. I have heard from a sleep tech that higher pressures than necessary can cause central’s. Since I have no obstructive’s showing up, I am going to run some tests and successively lower my pressure down until the point I can get obstructive’s just below AHI of 5 (not including the central’s) and see if the central’s get dramatically reduced. I may also experiment also with slightly increasing the exhale pressure just one point higher (I have it on lowest exhale pressure to feel easier to breathe out on my Autoset s9 machine), because am wondering if it’s tricking the brain into thinking that one is actually breathing by having it low, and that could be triggering the centrals. Just a theory at this point. I also just ordered that Bleep mask… it really seems like a cool idea… No headgear at all and has no pressing contact on the face at all…. And I also bought for about $22 the rotating and retractible hose management system for it. I can let you know how well it works.
I think one of the best videos that shows the separate hose managment idea is here… http://www.youtube.com/watch?v=L-pRVlAo6Ic I am wondering could certain cpap masks cause pressures on the jaw in such a way as to also affect the intentional growth of Vivos?
Graham Stoney · April 24, 2021 at 10:10 AM
My Autoset 10 seems to increase the pressure in response to central events; which I suspect is going in the wrong direction given that higher pressures induce more of them. There’s no clinician setting to turn off or reverse this behaviour. I only want higher pressure when necessary to stent my airway against obstructive events because the high pressure wakes me up and I want to train my brain to breathe as normally as possible, without relying on external cues like a machine taking over for me.
The downside of the Bleep mask is there’s another consumable to buy. It’s another revenue stream for the company, but I guess it’s worth it if it gives a better night’s sleep.
One reason I chose the P30i mask is that it doesn’t put any pressure on the jaws, which I thought might be important if I needed to wear it during Vivos or after jaw surgery.
Greg · April 18, 2021 at 11:17 PM
Cheers! Last night I also tried the pillows that I have at the least tightness and it does feel better now, but not sure of the dryness the pillow approach might create in general. Would a heated hose help with that? They really ought to allow a further angle adjustment to also angle the pillows also into the individual’s nose… too bad we can’t adjust open-source 3D-print these attachments (at least not yet) – Do you also have a link to the specific “Paw Paw” you use? Thanks!
Graham Stoney · April 19, 2021 at 9:15 AM
I use a heated hose; I believe it stops the air feeling too chilled if you’re in a cold climate and probably stops the water from the humidifier condensing in the hose. I use Real Paw Paw Ointment, which is cheap and widely available here.
Greg · April 22, 2021 at 12:53 AM
Thanks! Makes me wonder though if the heated hose (having extra elements) is likely heavier and may therefore pull or add more weight down or up on the mask at times. Is it noticeably heavier?
Graham Stoney · April 23, 2021 at 7:07 AM
I’e only ever had a heated host so I can’t compare. It enters at the top of the head on the P30i mask, so I don’t notice it’s there most of the time. I’d rather have a slightly heavier hose than cold air being blown into my nose; CPAP is unpleasant enough even with all the premium features like a humidifier and heated hose.
Harry · April 17, 2021 at 5:22 AM
I wish you all the best in this long journey Graham. I was wondering, what are your plans to track progress? Have you taken preliminary front and side pictures, scans of any sort to compare when treatment is finished?
Graham Stoney · April 17, 2021 at 7:25 AM
Thanks Harry. My provider takes regular photos and digital scans, so I’ll have before and afters I can post if it’s all successful; but the really important one will be the final sleep study showing if my obstructive sleep apnea is cured. Cheers, Graham
Erik · April 6, 2021 at 2:10 PM
Do you still believe apnea is the cause of your CFS or would you say they both coexist side by side… Don’t forget to use your relaxator twice daily to retrain your breathing, it’s a huge help to me..
Graham Stoney · April 6, 2021 at 2:29 PM
Yes, I doubt I will still feel fatigued when the sleep apnea is cured… but we’ll see. Thanks for the reminder about the relaxator; I’m glad you’re finding it helpful.
Bree · April 6, 2021 at 10:18 AM
I’m wondering if you have, to your satisfaction, proof that you’re getting actual palate expansion and not just tooth tipping or tooth movement. I only have mildly disordered breathing, not proper sleep apnea, and my dentist is prodding me to get palate expanders (either a DNA or a Schwartz since I balked at the price tag). I joined a support group and so many of them are all shouting that only MSE works and everything else just messes up your teeth particularly past your 20s (which I am). The potential waste of money, even 11k, is secondary to doing any more damage to my teeth, but I would like to widen my palate for hopefully multi-faceted health reasons. I just don’t know who to trust.
Graham Stoney · April 6, 2021 at 11:43 AM
I see no evidence of tooth tipping so far, but I don’t have any evidence at this point to say whether it’s actual palate expansion or tooth movement either. MSE advocates online tend to be quite vocal in their condemnation of anything else, but I’m yet to find one who has found a flaw in the research on bone remodelling I cite in this article. I consider the hefty price tag is paying my dentist to keep a close eye on things and make sure no damage is done. I’ve heard of a few failed cases with DNA Appliances in the Adult non-surgical Palate Expansion Facebook group, but I don’t think any of them involved damage being done; it just didn’t work for them.
Linda Horn · April 5, 2021 at 3:25 AM
Hi Graham,
I wonder if your nightly number of AHI is decreasing. I’ve only been using my mRNA for almost 3 months and it looks like average AHI is coming down. Pressure hasn’t changed for me either. Don’t get discouraged, this is a long-term plan. Thank you for posting your experience!
Graham Stoney · April 5, 2021 at 10:00 AM
Hi Linda,
I just updated the post to add AHI, H Count and OA Count to the graphs. The good news is that my overall AHI is falling, but the bad news is that it’s mainly central apneas and my OA Count is actually increasing. As you say, it’s a long-term plan all right!
Cheers,
Graham
Greg · April 19, 2021 at 2:44 AM
Hi Linda, how much has your AHI come down?
Kevin · April 5, 2021 at 1:54 AM
Thank you for the update. I am one week into wearing my DNA device. I did want to mention that the dental clinician I met with when I received my DNA device and wen through the initial fitting, reported that most people begin to experience significant changes around the 6 month mark (including the clinician herself, that wears the DNA device). I sincerely hope that you start to see some significant improvements since you are at the 6 month mark.
Can you let me know what pulse oximeter you use? I am stateside (I have browsing models on amazon).
Graham Stoney · April 5, 2021 at 6:24 AM
Yes, I’ve heard similar things too Kevin, so I’ll keep at it. My pulse oximeter is a Contec CMS50H. They’re available on eBay. There are a couple of other Contec models but this seems to be the latest and the cheaper ones don’t always have storage, which you need if you want to upload the results to OSCAR. It’s a little bit bulky though and I generally had to switch fingers during the night, so a more comfortable option is the Wellue O2Ring if you can afford it. Cheers, Graham
Clark · April 6, 2021 at 10:15 AM
Mandibular advancement splints like mRNA are suppose to provide immediate benefits to OSA
Of the many causes for airway obstruction, mRNA prevents a retrognathic jaw from falling backwards and narrowing the airway, while tongue physio strengthens the tongue base and prevents it collapsing during muscle relaxation of deep sleep, it only helps sleeping in a supine position
https://www.intechopen.com/books/sleep-apnea-recent-updates/nerve-and-muscle-changes-in-the-upper-airways-of-subjects-with-obstructive-sleep-apnea-structural-ba
I am not medically trained and I do not know OSA, but from what I have read the peripheral neuropathy aspect of OSA is the main cause beyond the anatomical and physiological problems, otherwise you’d wake up every time you hit deep sleep, instead of an AHI>5 your symptoms would be fragmented sleep, which is indicative of OSA’s little cousin UARS
I see it as anecdotes from two different perspectives, Vivos promises improvement for mild to moderate sleep apnea/UARS, if your symptoms alleviate immediately and disappears gradually over the first six months of treatment, then of course yo think of it as a cure, for someone with much more severe symptoms I’d imagine that’s where the “six months is when it really starts to work” narrative comes from, it will help, but to what extent? No amount of epigenetics will cure the neuropathy aspect of OSA, all your dentist can do is open up the oropharyngeal as much as possible
Found a presentation done by the DMD lady whose picture is used in the marketing material, sadly she doesn’t talk much about anything https://www.youtube.com/watch?v=uV_5gD4uj2Y
Graham Stoney · April 6, 2021 at 11:58 AM
Hi Clark,
I’d put my money on neuropathy being the consequence of the disease, not the cause. The paper you cite is interesting in that the two primary theories they describe both assume that muscle collapse is the problem rather than the airway being too small in the first place due to craniofacial dystrophy. I agree that peripheral neuropathy could well be a contributing third order effect after the primary (anatomical) and secondary (physiological) effects, but first order effects tend to be much more significant. I believe I do wake up partially every time I hit deep sleep when I’m not using my CPAP machine; this is the nature of OSA.
If the underlying anatomical and physiological problems are resolved, I believe the neuropathy will resolve itself.
Cheers,
Graham
Clark · April 8, 2021 at 8:25 AM
Has Jalal explained what the face mask accomplishes?
The DNA expands palate and will bring your upper teeth more forward, what does face mask do that the DNA isn’t able to?
Graham Stoney · April 8, 2021 at 9:03 AM
The face mask was my idea, based on Dr Felix Liao’s use of them with DNA Appliance patients. The idea is to get as much forward growth of the maxilla as possible to untrap my mandible. You can read more about it in this post. Cheers, Graham.
Greg · April 4, 2021 at 11:23 AM
Well with the upper and lower jaw expansion are you at least looking more like Brad Pitt?? I’d like to hear more about your CPAP pressure settings. 1) What are the min and max pressure settings range that you are using? 2) Does the CPAP machine have a resulting AHI score with your current pressure – if so what it it? 3) Also If so, has that AHI score gone down over time? 4) Idea to try if you haven’t already: If the AHI is already showing below 15 (low OSA) with the current min/max range, maybe you can try manually lowering your max to 7 (and/or 7.5) and see if the resulting AHI score roughly stays the same? The concept here is that maybe additional unnecessary pressure being triggered on by the machine is causing some other types of sleeping arousals from slight mask leaks and etc and this could be a way to double check that?
Graham Stoney · April 5, 2021 at 10:19 AM
Hi Greg,
Yes, I’m looking more and more like Brad Pitt every day, and it’s becoming a real problem at the beach with constant attention from very beautiful young women in bikinis. 1) My machine is set to min=5, max=15, fully automatic. 2) I’ve added AHI to the graphs in the post. 3) Central apneas are going down, hypopneas are steady and obstructive apneas are going up. 4) This may reduce my central apnea which seem to be induced by the machine since I didn’t have any on my 2 sleep studies. I notice that the machine increases the pressure after a central event, which I suspect makes them worse but I can’t find any way to turn this off. However, my central events are reducing over time so I don’t really want to mess with this; but thanks for the suggestion.
Cheers,
Graham
Greg · April 5, 2021 at 10:32 AM
The idea came from this video: http://www.youtube.com/watch?v=pL4egwDrvbg
Check out the video because maybe it might make a better case than I did…
(I was think even if you tried it just for a night or 2, it might yield some discovery – doubt that could mess anything up overall.)
Graham Stoney · April 5, 2021 at 10:50 AM
Thanks Greg, I’ll check it out.
Greg · April 17, 2021 at 11:36 AM
Hey Graham, I just started to try out CPAP again after not using any for many years, hoping new masks might help me. The pain/discomfort of the mask plus the forced breathing have been problems for me. I just got a new under the nose DreamWear nasal mask , as well as a medium pillows attachment for it and using it with my resmed s9 autoset. So far first day they are hurting in my nostrils a bit. I plan to not use them at night yet for some days so that my brain might get more used to the forced breathing – by watching tv during normal wake hours. What masks has worked for you? What mask are you using now?
Graham Stoney · April 17, 2021 at 11:49 AM
I think I trialled a Dreamwear Nasal cushion mask but found it didn’t fit the shape of my nose. I use a Resmed Airfit P30i, which is similar but has seperate “pillows” in the nasal section and fitted my nose better. I also experienced pain and irritation for the first week or so, and it comes back sometimes. Using Paw Paw ointment helped with this. Eventually it heals and my nostrils stopped hurting, so long as I adjust the strap to give the minimum force required to maintain a seal throughout the night. Otherwise, my nose hurts.