YARD Time (Yet Another Rapamycin Diary)

#41

My right eye has been bothering me all week. My ongoing ptosis was particularly bad and it felt like the muscles both above and below my eye were twitching although this was not visible. I have been monitoring my recovery by taking photos of my face morning and night and as of this morning I see a very significant improvement in RUL ptosis. Flipping the photo from mirror image and back I can see only a very slight difference between left and right.

I started taking:

250mg citicoline daily
200mg huperzine every other day
800mg Lions mane (Hericium Erinaceus‎) Extract daily
160mg Phosphatidylserine daily
425mg Bacopa Monnieri 50% Bacosides daily

for the past 3-4 weeks. Has this helped? Has rapa helped? No idea. It certainly hasn’t done any harm from what I can tell.

Continuing of 4mg rapamycin weekly until my next blood panel in 8 weeks time. Hopefully that gives sufficient time to see if citrus bergamot is effective at reducing my LDL and triglycerides which shot up 50% since starting rapa.

I have also started taking boswellia extract again in the hopes it brings down my hs-crp levels which shot up 100% since my first blood panel. I understand hs-crp can spike dramatically when recovering from an infection but I wasn’t aware of having one at the time.

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#42

Latest blood test shows:

LDL cholesterol still out of range despite citrus bergamot and niacin

hsCRP at 17mg/L - 4 times higher than previously and 8 times higher than before starting rapa despite taking boswellia extract.

No other changes to diet or exercise.

Clearly something is up. Consistently high hsCRP and LDL is a major risk factor for CVD and heart attack. I am discontinuing rapa for 3 - 6 months until I get greater clarity on what is going on.

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#43

Although Rapa may be the cause of LDL I would not think it is the cause of the CRP. CRP follows IL-6 which is cause by a combination of SASP and Infection. Hence the lower level over a period of time implies the senescent cell burden.

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#44

Totally agree with you there John. I just want to re-establish a solid baseline. Too many unknowns with this not entirely resolved Horner’s Syndrome.

#45

what is the reason you chose telmisartan as your ARB vs. Losartan and such?

#46

I have been off rapamycin for 10-12 weeks now and been focussing instead on getting my sleep apnea under control. I appreciate this forum is focussed on rapamycin so I am happy to repost this elsewhere if it’s not a great fit here.

Diagnosis

First sleep study diagnosed Obstructive Sleep Apnea (OSA) with an AHI of 60

Second sleep study 1 year later diagnosed OSA with an AHI of 30

Treatment

CPAP set to fixed pressure with no exhale relief

Adherence

I simply cannot tolerate CPAP and yet in the UK and Norway it seems to be the only thing state medical practitioners know anything about.

Root Cause

I eventually discovered that in order to control your sleep apnea via means other than CPAP you first must understand what is causing the apnea/hyponea events. Astonishingly no medical professional told me there can be LOTS of different root causes! You can find the root cause via a drug induced sleep endoscopy (DISE). I had this procedure done recently and discovered that my OSA is entirely tongue based. The very base of my tongue gets swallowed blocking the airway.

I have been advised that the inspire implant is probably the best option for me but before I take such a major surgical step I wanted to explore all other options first. To measure the effect any therapy is having I gathered a set of freely available tools and created my own DIY sleep lab at home.

DIY Sleep Lab

Pulse oximeter - this can tell me the number of times per hour my o2 drops 3% below baseline and hence give me a rough indication of AHI. It can also wake me up if my o2 goes below a set threshold.

CPAP machine - I have learned how to alter the settings on this machine (ResMed AirSense 10). Occasionally I will put it on the lowest possible setting and use it kind of like a cannula I can read the data captured using OSCAR.

OSCAR - this open source software is amazing. Your CPAP machine captures so much more data than is shown in the ResMed app and OSCAR can display it to you.

The OSCAR guide is essential reading and gives lots of tips on how to interpret your data and how it can guide your approach to lowering your AHI:

https://www.apneaboard.com/wiki/index.php/OSCAR_-_The_Guide

SnoreLab - mobile app which is really just a fancy audio recorder. It is extremely useful to be able to hear what is happening at the time just before the pulse oximeter alarmed

Webcam - I have a night vision webcam set up so I can track my sleep position and correlate position with events.

So now I have my very own sleep lab at a very low cost allowing me to measure a baseline and the effect of any interventions.

Hypotheses & Interventions

Hypothesis - Tongue based issues can be helped by positioning yourself such that gravity has less of an effect

Intervention - electric adjustable bed set to a 30 degree incline

Hypothesis - Tongue based issues can be helped by improving the muscle tone

Intervention - ExciteOSA. Basically a tens machine for your tongue. Yes very expensive but cheaper here in the UK than US.

Results
Snoring has almost completely stopped. Gone from an average of 50/100 “snore score” to 5. I need to gather much more data to understand how much is due to improved tongue tone and how much is positional but this is so encouraging!

Unfortunately my pulse oximeter still triggers 2-4 times a night with a threshold of 87% saturation. O2 dips for less than 1 minute each time.

Next Steps

The webcam is showing that I have my chin tucked hard against my chest each time the O2 alarm goes off. Then I discovered this is something the apnea community has also discovered and remedied via using a soft neck brace!

https://www.apneaboard.com/wiki/index.php/OSCAR_-_The_Guide#Issue_-_Positional_Apnea_.28Chin_tucking.29

I will continue to track using all the tools in my home sleep lab for at least a month or so and supplement with at home sleep studies from hope2sleep:

This is the exact same kit the NHS will give you and IMHO is really not that expensive. It will be interesting to compare the AHI score I come up with using my home setup vs the stowood visi kit.

As I say I know this site is not sleep apnea focussed so if this doesn’t fit here let me know. I thought you all might appreciate the biohacking angle and how easy it is to setup your own sleep lab especially once you have had a DISE to let you know the root cause.

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#47

@Lichen, this is a brilliant plan imo. We have been sleeping on an incline since 2019 and it has really helped my husband’s snoring. His doctors have been wanting him to have a sleep study for years but he will absolutely not do it unfortunately so I talked him into inclining our bed. I also found the incline helpful for myself for some minor aches and pains due to the slight traction. Some people use carbonic anhydrase inhibitors like high dose thiamine or diamox to promote better oxygenation and although I don’t know much about it myself that might be another area to explore on your quest to better manage the apnea.

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#48

“STM showed a satisfactory safety profile in moderate and/or severe OSA. STM reduced OSA, on average, by more than 20 events/h, one of the strongest reductions reported in a drug trial in OSA.”

WOW! That is an amazing reduction! Definitely something I am going to investigate fruther.

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#49

More astoundingly positive results for carbonic anhydrase inhibitors. I am so grateful to you for making me aware of this @blsm !!

https://jcsm.aasm.org/doi/10.5664/jcsm.6968

Study Impact: In this randomized crossover study, we found that acetazolamide alone or in combination with continuous positive airway pressure (CPAP) significantly reduced blood pressure and vascular stiffness compared to CPAP in patients with moderate to severe OSA who had withdrawn antihypertensive medication. In addition, acetazolamide decreased the apnea-hypopnea index by 42% and this reduction was associated with a decrease of bicarbonate concentration. Our findings suggest that carbonic anhydrase related mechanisms may be involved in blood pressure regulation and sleep-disordered breathing in patients with OSA and comorbid hypertension.

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#50

Fantastic Lichen! I’m glad you have something to to explore further that might make a difference.

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#51

Move along, nothing to see here.

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#52

I always found diamox to make carbonated beverages taste very bad. Weird but true.

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#53

My subjective feeling for the past 4-5 years has been that I lose my drive to breathe. My new hypothesis is that this decreased drive could be due to over active carbonic anhydrase. This would lower CO2 in the blood and in turn reduce drive to breathe. This in turn could allow the tongue to fall back as there is no longer a sufficient continuous flow of air that would otherwise help support it. And it is this which is causing OSA.

Until now I had been told that it is impaired signalling to the tongue to hold its tone. This could be part of it but my theory is a much better fit for why some OSA patients saw HUGE improvements in AHI when using acetazolamide.

What I find astonishing is OSA studies do not divide the cohort into groups depending on root cause. Someone who’s windpipe is crushed by excess weight is lumped in with someone like me who has a completely different underlying mechanism. No wonder these studies show mixed results!

Of all the carbonic anhydrase inhibitors I have managed to find studies for diamox aka acetazolamide is the most readily available where I am located.

Thiamine is interesting too but I have only found an in vitro not in vivo study.

My plan now is to trial acetazolamide using the protocol used in the Swedish study and monitor it’s effects using the DIY sleep lab outlined in my previous post.

I am hoping a mix of positional therapy, ExciteOSA for tongue tone and a carbonic anhydrase inhibitor might just be the combination that gets this under control. Watch this space.

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#54

@Lichen, I’m really excited to follow your experience!

#55

Honestly I cannot thank you enough for your reply which has given me a whole new very exciting avenue to follow. I just found a brand new paper which is fairly technical but in essence supports my hypothesis that by slightly increasing CO2 you can stabilise your breathing:

Their approach is to augment a CPAP type device with a “Enhanced expiratory rebreathing space” which basically reduces the ability for the body to remove CO2 quite as efficiently. This is therefore a mechanical way to achieve the same outcome as a carbonic anhydrase inhibitor!

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#56

I assume you’ve gotten past the easy stuff but just in case. I would have nighttime breathing issues if I slept on my back. I put a pillow under my hip to discourage rolling over after falling asleep in my side. I also mouth tape when I sleep, and, to train my tongue, I consciously hold my tongue at the roof of my mouth during the day. I’m told I no longer snore, and my Oura ring says my SpO2 is ~97.

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#57

My pleasure. It was just a meager breadcrumb of information but I’m glad it’s proven useful. Thank you for the fantastic frontier paper. I have a special place in my heart for people dealing with sleep apnea who cannot tolerate CPAP.

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#58

Thanks Joseph. Yeah my second sleep study showed my AHI was twice as high when on my back so started trying various things to keep me on my side. Most recently using this app:

http://www.proximalbox.com/somnopose/

I keep my tongue forward and breathe through my nose. There seems to be something about the very base of my tongue right at the back of my throat that blocks even when the rest of my tongue is forward. Hard to say when I am sleeping but when I awake my tongue is hard against the roof of my mouth too.

Diamox aka acetazolamide arrives today. I am excited to get started and see if I can replicate the results in the study with minimal side effects.

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#59

Thanks for the app info. How do you “wear” the iPhone?

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#60

Currently using a running belt. However, I note that I can rotate my neck and upper chest without setting off the alarm so I reckon it would be even better to wear it in some sort of vest that holds it on my chest. There are dedicated devices that you can even wear as headband but they are £350 here

This one does record audio though and I can’t run both snorelab and somnopose at the same time so if I am ever feeling flush with cash maybe I’ll get it.

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