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Hi, (deleted section here about my family doctor "not" treating my anxiety over the return of the "flutter" (see below) seriously; she is doing her best to help me ferret out the true origin of my excessive anxiety regarding disordered sleep, which was NOT IN PLAY three months ago (it all started when my old issue, the "mystery chest vibration" started appearing again).

I was diagnosed with moderate sleep apnea in 2005 in Canada. At the time, i was experiencing a "tickling/buzzing" sensation in my left chest for at least 8 years. I had not been able to find the cause as it was apparently not a true cardiac murmur (29 doctors and specialists in 4 countries couldn't find a reason). I refused yo consider wearing a CPAP and fled the clinic. When i moved to Singapore in 2008 for romance, i began to suffer clear symptoms similar to narcolepsy. I gave in, got another sleep test and was diagnosed with AHI 23 by the great Dr Kenny Pang (PAT test). Fast forward to 2020. I still had a "fluttering" sensation in my chest when i slept; but i was doing great. I went to the same sleep clinic that diagnosed me positive in 2020 and, strangely, they said i do not have sleep apnea! This is perplexing because i used the machine for 15 years.

Last year, i did some very heavy work sanding and varnishing the floors in my house. After doing this, i noticed that the "mild flutter sensation" which i get at night, had grown stronger and had a bit of a "rhythmic rolling" to it. I was put on 120 mg Propranalol in 2007 for this "flutter," and so i thought the appropriate step would be to double it (was all the way down to 10 or 20 mg/day at that point), I woke up the next morning with severely cramped hands and the same flutter. While the hand-cramping might be related to the floor work, what convinced me it was not, was the fact that if i slept or even rested on my left side even for a few minutes, the cramping would come back (goes away in the morning). I feel the cramping is some sort of insufficiency.

A few weeks ago, the "flutter" stopped and i started getting PVCs or PACs. If i sleep on my left side and forget the CPAP, i get a pounding heart rate and a blood pressure of 180/100. The symptoms i am experiencing are excruciatingly worrying. But it's an extremely slow process getting any testing done through the Ontario system.

Can anyone confirm what CHF looks like on a CPAP report (i had one period of periodic breathing that was 9.7% recently, and many PACs/PVCs when i accidentally fell asleep without the CPAP mask)?

Duing the day. i am normal functionally but the anxiety is crippling.

CPAP: Respironics Auto-Bipap with insulation REMOVED
Usage history: 16 years (no idea if this is set right)

AirSense10 APAP
Usage History: 6 months (no idea if this is set right)

Proper treatment of any possible heart-related disorders and/or any possible anxiety-related disorders are best handled by trained, informed, trusted medical professionals who are fully aware of your family history and your full medical history.

Apart from all of that, any data you post here from PAP treatment may be used to assess whether your airway appears to be sufficiently stabilized.

ewriter wrote: ↑

Thu Jan 19, 2023 4:57 am

Can anyone confirm what CHF looks like on a CPAP report

This is what diagnosed my late brothers severe congestive heart failure:

And to go along with that . . .

Respiratory sleep disorders (RSD) occur in about 40-50% of patients with symptomatic congestive heart failure (CHF). Obstructive sleep apnea (OSA) is considered a cause of CHF, whereas central sleep apnea (CSA) is considered a response to heart failure, perhaps even compensatory. In the setting of heart failure, continuous positive airway pressure (CPAP) has a definite role in treating OSA with improvements in cardiac parameters expected. However in CSA, CPAP is an adjunctive therapy to other standard therapies directed towards the heart failure (pharmacological, device and surgical options).--Naughton MT. Respiratory sleep disorders in patients with congestive heart failure. J Thorac Dis 2015;7(8):1298-1310. doi: 10.3978/j.issn.2072-1439.2015.07.02--https://jtd.amegroups.com/article/view/4744/html

Thanks Lazarus (interesting name).

My doctor today finally talked with me and agreed to set me up with a new Cardiologist and a new sleep study and a Psych referral for the anxiety.


After checking my past history on the CPAP (11 years), i was surprised to find some incidents of periodic breathing; but most were short-lived and they don't occur that frequently. Seeing that, i was relieved. It's a lot to ask any doctor who sees me for any treatment, because i lived overseas for 17 years and was treated and seen by many doctors and specialists overseas. Though i have all my records, my current doctor didn't care to see them. I hope the referrals will prove more helpful but, on the other hand, i don't want to chase something that isn't there -- any worry constantly about it.

Below is a snapshot of a recent CPAP session (Respironics Auto-Bipap which i only use on the CPAP setting @ 12.5 / 13 PSI).
https://ibb.co/Rh9xP9k



Here is the truth: what i am experiencing, i have experienced at least five separate, memorable times over the past 25 years.

Here is what i experience (probably) a form of myoclonus or something similar:

(1) On trying to "drop off" to sleep, a feeling of a "blocK" as if my heart or brain will not allow it.
(2) A rumbling, rhythmic pulsation which i CAN NOT locate (seems to be in my chest; but it could also be in my mind);
(3) Extreme fear and anxiety;
(4) In the fifth episode that started last year after i did some very heavy manual labour (sanding a floor and varnishing it without adequate masking/ventilation), the "flutter" sensation started up again a few days after i had completed the floor. It grew more intense and eventually became PVCs and a "rumbling" heart sound (the "sound" is not heard on a stethescope: it's more like a "bounding pulse";
(5) No chest pain, no shortness of breath;
(6) During the day, suffering from clear sleep-deprivation symptoms. If i drop into a nap in the car, for example, i will get the "flutter" just as i drop off.
(7) mild left breast pain that is achy and that disappears;
(8) achy back pain that eventually disappears.
(9) ocassional sharp and small pain in my right flank above my kidney (wondering if this is due to a adrenal gland tumor, which causes precisely these symptoms and for which propranalol, which i have been on since the UK/2006 episode, is contraindicated for).

What i believe one cause for this experience is:

Environmental or other toxins and my severe allergic reaction to them, including the mercury in my fillings (i was given 16 often large fillings, and it is well known that these leach into your heart and brain). I had 15 of the 16 fillings replaced with resin in 2017 (with difficulty: the head of the practice suggested i have my brain examined by a shrink). But i have one large, black, root-canal filled with mercury left -- and dentists in Canada REFUSE to remove the tooth (though the latest one agreed to remove it if I would only buy a $3000 or similar implant).

To add a little more: the other 3 known episodes are CLEARLY linked to:

(1) sleeping beside a dusty, moldy furnace. When i went to see a Cardiologist, he directed me to an Allergy Specialist. Testing showed i was severely allergic to dust, mold, environmental toxins, etc. He gave me Vancenase, a corticosteroid, which is no longer available in Canada. After one puff of this, i slept for six or seven hours -- the first time in six months.
(2) In China, i rented a room in a housing estate. Unfortunately, i did not know the landlord had painted over the moldy walls. Although i was using a CPAP, i began getting very sick with "rumbling noises in my chest/flutter". There is also the added fact that i consumed large quantities of 40% Chinese liquor, which could have affected my heart and sleep apnea. I had to leave my job with Hewlett-Packard in China due to the extreme mold that appeared on the blankets and bed;
(3) Possible allergic/asthma-like reaction to the finish my landlord had used to paint my apartment walls in London, UK. I did not have a CPAP at this time and was not diagnosed with sleep apnea (AHI 23) until 2005 (which i did not follow up until 2011).
(4) Singapore: most likely, hyperstimluated reaction to the large amount of atmospheric molds, algaes, pollutants, dusts and pollens floating around Singapore.
(5) Probably others

I fully recovered from these incidents but it took years. I am working on getting my CPAP to optimal therapy and i know that i almost certainly need an oral appliance/
Please can anyone out there who is a Christian pray for me?

Thanks!

Paul

ewriter wrote: ↑

Thu Jan 19, 2023 8:56 pm

12.5 / 13 PSI).

Along the "just FYI" vein, it's Centimeters of Water, as in how much force it takes to push something (specifically air) that far down in water.

a 13 on your machine is 0.1849 PSI.

13 PSI would result in your ribcage being painted all over the walls and ceiling.

Also, please follow the instructions on the wiki, or pasted all over the top of the forum, on how to post pictures.

wiki/index.php/Oscar:organize

Use imgur, because imgbb sucks, it's fuzzy and impossible to read.

ewriter wrote: ↑

Thu Jan 19, 2023 8:56 pm

Lazarus (interesting name)

PAP therapy has given me a new life, so the over-the-top dramatic side of me convinced me to take on that name for this forum.

ewriter wrote: ↑

Thu Jan 19, 2023 8:56 pm

My doctor today finally talked with me and agreed to set me up with a new Cardiologist and a new sleep study and a Psych referral for the anxiety.

Glad to hear it. A stress test and an echo may let you know where you actually stand so that you don't have to worry about every flutter and twinge. And putting your anxiety in perspective where you can decide on a approach to it can be empowering in how to file it and deal with it. And if your PAP can get optimized so that you use effective pressure all night every night, that can do much for your heart and mood on it's own, too.

ewriter wrote: ↑

Thu Jan 19, 2023 8:56 pm

On trying to "drop off" to sleep, a feeling of a "blocK" as if my heart or brain will not allow it.

Dialing in the right starting pressure for PAP can sometimes help with that problem.

As for the allergies and mold, I have had a lot of trouble all my life with both. But after about a decade of optimized PAP, I feel I do better with them.

I am a little jealous of all the different countries you have lived!

ewriter wrote: ↑

Thu Jan 19, 2023 8:56 pm

getting my CPAP to optimal therapy

Maybe focus on that especially for now by allowing the ones at this forum who excel at assisting with that, such as Palerider, to suggest things to try once you get your posting of images of data all figured out.

As his last post said:

palerider wrote: ↑

Thu Jan 19, 2023 9:14 pm

please follow the instructions on the wiki, or pasted all over the top of the forum, on how to post pictures.

wiki/index.php/Oscar:organize

Use imgur, because imgbb sucks, it's fuzzy and impossible to read.

My mother experienced a disturbing "flutter" for years until she finally saw a
competent doctor, who referred her to a cardiologist--who recognized
she needed a pacemaker.
Post-pacemaker, she had no more stupid "flutter"--
and vast improvement of her quality of life.

And anxiety and stress hormones from bad sleep can sometimes cause similar fluttering sensations too.

Hi Lazarus,

Can you or anyone please help me understand my results in the attached report? I am waiting on a sleep study but it is taking weeks to get set up.

https://imgur.com/a/e1dZlP0

Maybe I missed it, but is there a reason you're on plain Cpap vs Apap?

Do you still take the Propanalol?

Have you ever been on anything for your anxiety etc?

Hi Lazarus,

Thanks so much for replying. For about 14 years i have been taking the propranalol. I was originally prescribed it in the UK in 2007 and was given 120 mg a day. I had a very mild "flutter" and the feeling of a "bounding pulse." I was not using a CPAP. I have used the beta blocker to suppress the "flutter" and reduced the dose, with my doctor's knowledge, down to 80 mg in 2018. However, without my Doctor's knowledge, i continued to reduce the dose all the way down to 20 mg/day because i felt so good. That was up to September/October last year, when i went into overdrive sanding a floor with a very heavy floor sander, hand-held electric sander, and did the varnishing (mostly without proper masking / ventilation). My "flutter" which was still very mild, came back and came back much more vigorously. I doubled the dose of Propranalol and the next morning, though i had no "flutter," my hands were cramped badly together like claws. That was last October. Since then, i have decreased the Propranalol down to 40 mg/day with the Doctor but my Cardiologist wouldn't allow me to increase it again, as my symptoms continued. Eventually, with another doctor's permission (walk-in/urgent care), i increased the propranalol back to 80 mg/day. This helped to control my "flutter" but i could not fall asleep at all, or slept only 1 - 3 hours, because the "flutter" would wake me up.

I feel the propranalol might be slowing down my breathing, so i have cut the dose of 40 mg down to 20 mg at night. If i take 40, it seems my "flutter" is not controlled and i wake up with a racing heartbeat IF i have "too many" hypopneas, pauses and apneas, and increased blood pressure (not every night). My biggest issue is the inability (yet) to get 4-6 solid hours of "flutterless" sleep.

As for CPAP vs APAP. I was using the APAP mode for a long time including up to August last year (i used the machine only six times that month, as i was able to sleep well without it (and only a tiny "flutter" on waking). I am not sure why i switched to CPAP. Right now i am using the APAP machine in CPAP mode. Do you think i should put it back in AutoPAP mode? (one reason i may have changed is because the DME sold me an "Autoset for HER" which is phsyiologically programmed for "female anatomy." (i.e. a female gender PAP algorithm). But, perhaps this was a bad idea!

I was prescribed some Lorazepam for anxiety (0.5 mg twice daily); i do take it BUT i fear it actually slows my breathing (yes, it might prevent panic attacks; but it's contraindicated for sleep apnea). Some years ago (prior to CPAP use) i was also prescribed Respiredol (SSRI) for anxiety; but i don't think this helped.

I feel i could recover if only i can sleep through, without any panic attacks that increase my: apneas or hypopneas/blood pressure/anxiety/heart rate/blood pressure.

Taking more medicine that might stifle my breathing is not an option; and what is even more strange is that i feel i MIGHT be able to sleep through, without the CPAP (because i just feel i breathe better without the therapy) as long as i didn't notice any "flutter" or "palpitations."

ewriter wrote: ↑

Sat Jan 28, 2023 9:12 pm

the DME sold me an "Autoset for HER" which is phsyiologically programmed for "female anatomy." (i.e. a female gender PAP algorithm). But, perhaps this was a bad idea!

You have the AirSense 10 AutoSet for Her model machine.

It has ONE mode target marketed for women but actually the for Her auto algorithm could just as easily work for a guy.
It has ANOTHER auto adjusting mode that is the regular auto mode. I believe it is called AutoSet mode.
And of course it has fixed CPAP mode.
3 modes of operation.

If you were trying the for Her autoSet mode it probably wasn't the best idea if you needed 12 cm or more pressure.
The For Her mode doesn't work so great when the pressures needed are 12 or higher.

Try auto mode again but the regular autoset mode and not the For Her mode.

Hopefully your medications and dosages can get worked out between you and your team in a way that won't necessitate your having to make such decisions so much on your own, as you may have done before. I realize systems differ from country to country. But hopefully things will come together where you are now.

Good communication and patience can help. But it is good for everything to make sense to you as you and your team cooperate.

I have used the For Her algorithm, although I am a large (over 6'2") male, and did well on it. But I now use the regular autoset algorithm and it also works fine for me.

I do not consider myself skillful at interpreting sleep reports the way many here are. Part of that is laziness on my part, probably, but part of it is my recognition that I'm just not good at it.

Again, just curious, but have you tried a small (? 2 mg) dose of melatonin 1/2 hr before bed - it's a milder sleep aid but may help counteract other meds that may be waking you, or at least not letting you get good sleep.