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Link Posted: 12/29/2022 6:40:29 PM EST
[#1]
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Originally Posted By Regency:
I've been dealing with chronic illness for 17 years with good and bad years, but never reach asymptomatic.

I've been told I have CFS, Fibro, myofacial pain syndrome, and other BS. About 6 years ago I was diagnosed with POTS. I thought wow, something we can actually measure and see dysfunction.

I'm supposed to go to the Brigham in later 2023 to do more invasive testing. They do iCPET, nerve fiber studies, and muscle biopsies for mitochondrial issues.

I deal with chronic GI issues, muscle pain, fatigue, headache, and feel drunk.

Long Covid is rampant with POTS. All the POTS Dr's are booked out 1-2 years now because of Long Covid.  You can look up a 'poor mans tilt table test' to do at home.
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I'd never even heard of POTS until i read your post. Wow. I'll have to dig into that now. Wish I'd kept my inversion table.
So.....drumroll......I have my sleep study results.

Results say:

*ZERO* obstructive apneas.

*TWO* central apneas.

That was in less than 4 hours of a 7-hour study. IOW, I didn't sleep much at all. Of course I didn't. I was in a strange bed hooked up to multiple machines. Sleep Apnea has classically been known by poor sleep that resulted in constantly being tired......yet it took me forever to fall asleep (they call this sleep onset latency) in the hospital, as it always does at home, and my 'sleep efficiency' numbers are terrible because a lead fell off and the tech woke me up while fixing it and I never went back to sleep.

Sleep is divided into 4 phases/stages and my first 2 phases were 80% of the night. Not surprising at all given a strange environment. That means my last two phaes were only 20% of the night.

Is that typical for me? Who knows? Chance of a study done in a sleep lab allowing me to figure this out: low to none.

Now, the rest of the story: I have a lot of obstructive hypopneas. ~7 per hour. That's basically a lesser form of an apnea. My 02 sats drop, but I don't altogether stop breathing.

Until I talk to the doc (still ~3 weeks out) I will assume the best - that more exercise and weight loss could help with the hypopneas - and wait to discuss with the doc.

Summary: Sleep apnea isn't an on/off condition, it's a spectrum. Once you go over 5 events per hour they call it 'sleep apnea'. And because hypopneas and apneas are lumped together, I am now considered to have mild apnea with 7-8 events per hour.

I will address this immediately, with diet and exercise (I needed a diet push, honestly; I have been maintaining my weight well but need to drop more than I lost last year.....no more than 20 pounds, and I suspect that it'll be even less, as I have a bit loose skin that'll take a long, long time to go away). Much more importantly, I need to gain some muscle mass. I have been working on this lately and will double down on those efforts.

Also - more good news: While accessing my sleep study results, I had to create an account at the hospital and use their 'portal'. Lo and behold, my MRI from several weeks ago was on there. Perfectly normal. My eyes apparently bulge out of my head a bit, but, otherwise, my brain 'looks' normal per the MRI.

Link Posted: 12/29/2022 9:53:32 PM EST
[#2]
I am having a hard time being good at my job.  It may cause hardship. I've always been good at my job.  Wtf
Link Posted: 12/30/2022 9:42:15 AM EST
[#3]
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Originally Posted By Taboot:
I am having a hard time being good at my job.  It may cause hardship. I've always been good at my job.  Wtf
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My work ties pay directly to production.

Production has been abysmal the last 16 months. I know how you feel.
Link Posted: 12/30/2022 7:19:49 PM EST
[#4]
Yeah POTS seems to be taking the world by storm, probably because of more awareness, COVID, and autoimmune diseases are running rampant over the last few decades.

I actually just failed an EMG and reflex test this morning.  Looks like Lambert Eaton Syndrome doc says.  Probably what is causing my POTS.

My dad had been talking about fatigue a lot over the last few years, turns out he has apnea too. His machine has helped over time he says.
Link Posted: 12/30/2022 7:40:34 PM EST
[#5]
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Originally Posted By arowneragain:


14 months of post-covid brain fog.

Constant low level headache, perhaps a 1 on a 10 scale, with the occasional 2. Slight to moderately difficult sleep, and if I have a sinus infection or some similar minor illness, the 1-2 headache is additive to whatever comes with the other illness, so if I have a baseline 1 headache and get a baseline 2 headache from a sinus infection, the total is a 3/10. This makes me much more sensitive to minor illnesses. And when I exercise, once my heartrate is up my headache magnifies. To the point that exercise is unpleasant.

This headache comes with the inability to really think clearly. I can't focus, can't work hard under stress, I'm easily distracted from tasks, I make stupid, simple mistakes at work. Imagine if you're going up/down a mountain and your ear canals swell but won't 'pop'. That's my life. Or like you didn't sleep the night before and you desperately want a cup of coffee but you're out.  

I've heard people speak of having sleep apnea and my symptoms sound much like that, but only in my head; the rest of my body seems normal. I strongly suspect that much of 'long covid' is tied to reduced oxygen levels in the brain. That's what I feel like.

I got my first test result back just now. My Sedimentation Rate test came back as a '3'. Apparently that's very good, and a strong indicator of a healthy diet and no hidden infections.

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I know of several Drs who Rx ivermectin for long covid symptoms and they say it works.
Link Posted: 12/30/2022 7:49:10 PM EST
[#6]
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Originally Posted By arowneragain:
So....more labs came back today.

They do two tests for Rocky Mountain Spotted Fever. The first is a positive/negative test, mine came back positive.
The second is a ratio test, any ratio greater than 1:64 is considered high. My ratio is 1:256.

I get what 'positive' means. I don't understand the ratio. I suppose with the positive test, I don't have to understand the other. I have, or have had, RMSF.

But there's another RMSF test they ran where the reference range is 0.0 to 0.89. My result was 0.32, which is normal, or negative.

*Mysterious noises intensify*

But wait there's more:

They ran a bunch of autoimmune tests. One is a simple pos/neg test and mine is positive. Another (RNP) has a reference range of 0.0-0.9.  Mine is 1.0. So, high, by a little bit.

So I have test results that show me as low folate, positive for RMSF, and positive for some autoimmune issues.

Kinda worrisome, but at least I now know. I'm hoping the doc calls me today to explain what these things mean.

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COVID isn't just infecting you it could be reactivating viruses that have been dormant in your body for years

You had COVID a few months ago and recovered but things still aren't quite right.

When you stand up, you feel dizzy, and your heart races. Even routine tasks leave you feeling spent. And what was once a good night's sleep no longer feels refreshing.

Long COVID, right? It may not be so simple.

A mild or even an asymptomatic case of COVID can cause reservoirs of some viruses you've previously battled to reactivate, potentially leading to symptoms of chronic fatigue syndrome a condition that resembles long COVID, according to a recent study published in the journal Frontiers in Immunology.


https://fortune.com/well/2022/12/26/is-long-covid-chronic-fatigue-syndrome-myalgic-encephalomyelitis/

Link Posted: 12/30/2022 8:10:26 PM EST
[#7]
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Originally Posted By TheRealSundance:
COVID isn't just infecting you it could be reactivating viruses that have been dormant in your body for years

You had COVID a few months ago and recovered but things still aren't quite right.

When you stand up, you feel dizzy, and your heart races. Even routine tasks leave you feeling spent. And what was once a good night's sleep no longer feels refreshing.

Long COVID, right? It may not be so simple.

A mild or even an asymptomatic case of COVID can cause reservoirs of some viruses you've previously battled to reactivate, potentially leading to symptoms of chronic fatigue syndrome a condition that resembles long COVID, according to a recent study published in the journal Frontiers in Immunology.


https://fortune.com/well/2022/12/26/is-long-covid-chronic-fatigue-syndrome-myalgic-encephalomyelitis/

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Originally Posted By TheRealSundance:
Originally Posted By arowneragain:
So....more labs came back today.

They do two tests for Rocky Mountain Spotted Fever. The first is a positive/negative test, mine came back positive.
The second is a ratio test, any ratio greater than 1:64 is considered high. My ratio is 1:256.

I get what 'positive' means. I don't understand the ratio. I suppose with the positive test, I don't have to understand the other. I have, or have had, RMSF.

But there's another RMSF test they ran where the reference range is 0.0 to 0.89. My result was 0.32, which is normal, or negative.

*Mysterious noises intensify*

But wait there's more:

They ran a bunch of autoimmune tests. One is a simple pos/neg test and mine is positive. Another (RNP) has a reference range of 0.0-0.9.  Mine is 1.0. So, high, by a little bit.

So I have test results that show me as low folate, positive for RMSF, and positive for some autoimmune issues.

Kinda worrisome, but at least I now know. I'm hoping the doc calls me today to explain what these things mean.

COVID isn't just infecting you it could be reactivating viruses that have been dormant in your body for years

You had COVID a few months ago and recovered but things still aren't quite right.

When you stand up, you feel dizzy, and your heart races. Even routine tasks leave you feeling spent. And what was once a good night's sleep no longer feels refreshing.

Long COVID, right? It may not be so simple.

A mild or even an asymptomatic case of COVID can cause reservoirs of some viruses you've previously battled to reactivate, potentially leading to symptoms of chronic fatigue syndrome a condition that resembles long COVID, according to a recent study published in the journal Frontiers in Immunology.


https://fortune.com/well/2022/12/26/is-long-covid-chronic-fatigue-syndrome-myalgic-encephalomyelitis/

Yeah.  It isnt covid.   It us the vax weakening the immune system and allowing those viruses to thrive and not be fought off in those people.
Link Posted: 12/30/2022 8:18:52 PM EST
[#8]
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Originally Posted By S13:
Yeah.  It isnt covid.   It us the vax weakening the immune system and allowing those viruses to thrive and not be fought off in those people.
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I’m not vaxed, fwiw.

Link Posted: 12/30/2022 9:12:49 PM EST
[#9]
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Originally Posted By medicmandan:



I get some of that too.  And dry mouth, even with the humidifier.  It's contributing to gum recession and I'll probably need grafts soon.  But it decreases my chance of stroke and a heart attack so there's that.
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Mouth breather?
Link Posted: 12/30/2022 9:18:50 PM EST
[#10]
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Originally Posted By arowneragain:


I'm not vaxed, fwiw.

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Originally Posted By arowneragain:
Originally Posted By S13:
Yeah.  It isnt covid.   It us the vax weakening the immune system and allowing those viruses to thrive and not be fought off in those people.


I'm not vaxed, fwiw.

I was talking about the study the above poster linked.  

I knew weren't vaxed.  
Link Posted: 12/30/2022 11:51:22 PM EST
[#11]
Link Posted: 12/30/2022 11:58:59 PM EST
[#12]
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Originally Posted By medicmandan:



Yeah, which is why I'm in a full mask instead of just a nasal pillow.
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Originally Posted By medicmandan:
Originally Posted By TheRealSundance:
Mouth breather?



Yeah, which is why I'm in a full mask instead of just a nasal pillow.

I am too.   But I have an elastic band that keeps my mouth shut, so I use the nasal pillows.

Interestingly I can't have the humidifier going at all.  I've always used dry normal temp air.
Link Posted: 12/31/2022 10:45:23 AM EST
[#13]
You guys that sleep with an octopus on your face, how does this impact sleeping with your wife? I don't mean that euphemistically. I mean literally - I often fall asleep now with my face 3 inches from my wife's ear.

How do you handle that?

How overweight are you? Have you *tried* losing excess weight to see if it helped? Have you considered surgery to trim the offending neck tissues?
Link Posted: 12/31/2022 11:18:57 AM EST
[#14]
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Originally Posted By arowneragain:
You guys that sleep with an octopus on your face, how does this impact sleeping with your wife? I don't mean that euphemistically. I mean literally - I often fall asleep now with my face 3 inches from my wife's ear.

How do you handle that?

How overweight are you? Have you *tried* losing excess weight to see if it helped? Have you considered surgery to trim the offending neck tissues?
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We have a king bed and I don't put it on until we are going to sleep.  

As with most, I could lose a bit of weight but I'm not a hambeast or anything.  I'm quite active for a 54 year old and exercise 4-5 days a week.  I deadlifted 365 yesterday, so I'm not in bad shape.   I snored when I was 20 and was playing football, so it isn't weight, it is my head and neck structure.  I've had a UPPP and tonsillectomy and it didn't stop my snoring.  CPAP is the only thing that worked for me.

My Dad had apnea bad.   He died at 73.  He probably would have lived longer if he had used a CPAP.
Link Posted: 12/31/2022 1:14:23 PM EST
[#15]
Link Posted: 12/31/2022 11:19:13 PM EST
[#16]


@arowneragain

I had a confirmed case of RMSF 7 years ago.  I STILL show antibodies for it every year during annual bloodwork ...with tick panels because of my outdoor work.  Have you been on any antibiotics in the last 5-7 years?  Esp. Doxy?  You could have...in essence without knowing it.... Had undiagnosed RMSF and treated it.  Expect to flag for it.  

Unrelated... Well....actually related.... Look up olive leaf extract.
Link Posted: 1/1/2023 1:46:47 AM EST
[#17]
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Originally Posted By medicmandan:



Yeah, which is why I'm in a full mask instead of just a nasal pillow.
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Have you tried a soft neck brace?   Keeps your mouth closed.
Link Posted: 1/1/2023 1:49:23 AM EST
[#18]
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Originally Posted By arowneragain:
You guys that sleep with an octopus on your face, how does this impact sleeping with your wife? I don't mean that euphemistically. I mean literally - I often fall asleep now with my face 3 inches from my wife's ear.

How do you handle that?

How overweight are you? Have you *tried* losing excess weight to see if it helped? Have you considered surgery to trim the offending neck tissues?
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It keeps me from snoring.  

the pulmonologist looked at my throat and said neither would help.  Plenty of slim people use cpap.  Couple post about surgery said it was very painful and helped a little.
Link Posted: 1/1/2023 9:19:17 AM EST
[Last Edit: arowneragain] [#19]
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Originally Posted By leafinthewind:



@arowneragain

I had a confirmed case of RMSF 7 years ago.  I STILL show antibodies for it every year during annual bloodwork ...with tick panels because of my outdoor work.  Have you been on any antibiotics in the last 5-7 years?  Esp. Doxy?  You could have...in essence without knowing it.... Had undiagnosed RMSF and treated it.  Expect to flag for it.  

Unrelated... Well....actually related.... Look up olive leaf extract.
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You contract it locally? That would answer the question of whether there’s a precedent for it in my area.

Not sure if I mentioned it in this thread but during Turkey season (April 2022) I got a tick bite. Maybe ~2 weeks later I woke up with severe pain in both elbows. No other symptoms. A real WTF type moment. Seven months later the pain still exists though only at maybe 10-20% of original level. I did report this to neuro as it’s a common side effect of RMSF.

*shrug*

I may have just had the worlds mildest case of it.

Unfortunately I do not remember the last time I had antibiotics. Not saying I haven’t had them lately; I’m saying I literally do not remember, if I did have them.

Eta: will look up olive leaf. Thanks!
Link Posted: 1/1/2023 9:21:18 AM EST
[#20]
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Originally Posted By medicmandan:


Been almost four years and she only complains when I don't wear it or when I need to replace a mask and it's leaking.

I have central sleep apnea diagnosed after a cardiac stent four years ago (this week).
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Any insight as to what causes central?

Obstructive is somewhat mechanical and understandable. Central is a very different animal.
Link Posted: 1/1/2023 9:22:47 AM EST
[#21]
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Originally Posted By TheRealSundance:
It keeps me from snoring.  

the pulmonologist looked at my throat and said neither would help.  Plenty of slim people use cpap.  Couple post about surgery said it was very painful and helped a little.
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Certainly it would be a last resort, but I’m not ruling it out.
I either don’t snore badly or only do it when my wife is in deep sleep. So it’s not a bother now, for her at least.
Link Posted: 1/1/2023 6:10:08 PM EST
[#22]
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Originally Posted By arowneragain:


Certainly it would be a last resort, but I'm not ruling it out.
I either don't snore badly or only do it when my wife is in deep sleep. So it's not a bother now, for her at least.
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I would go to a Dr that specializes in Apena to get it checked out.  
Link Posted: 1/1/2023 6:21:32 PM EST
[#23]
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Originally Posted By arowneragain:
So the neuro office called this morning and told me I had mild apnea.

They didn't bother to break down which type or to what degree, just told me the med device people would be calling soon to sell me a device. I more or less went off on the person on the phone about prescribing expensive devices without even letting me see the study results and we ended the convo with a plan to get me a copy of the results. They couldn't even deliver the results through the portal where they delivered all of the other results they didn't bother explaining to me or following up on.

I am growing to despise the entire medical community. I may have apnea but I have to get a handle on whether it's obstructive or central and in what ratios and if it's obstructive, to what degree it could be fixed by losing (more) weight, and if it/s central, could it be caused by the same thing causing the rest of the brain fog, and if I'm generally asymptomatic on the obstructive part (IOW, pre-brainfog I woke up refreshed every morning) is it really necessary to clamp a mask on my face every night for the rest of my life?

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If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.

I had no idea how bad off I was until the sleep study where I wore a CPAP for the first time - literally felt like a completely better person the next day and that was with disrupted sleep.  Apnea can screw with so many other things - get a sleep study, CPAP isn't the worst thing.

I did lose a bit of weight - which also helped - Losing weight was very hard at first - Hunger habits are hardest for me to beat.

Link Posted: 1/1/2023 9:45:17 PM EST
[#24]
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Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.


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I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.
Link Posted: 1/2/2023 12:23:44 PM EST
[#25]
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Originally Posted By arowneragain:


I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.
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Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


You may be thinking about this wrong. It can be a short-term fix while you are making your way thru other issues. Any help you can get is help you should take. It will likely help you to get to your longer-term goals/objectives faster and you can drop it any time you like.
Link Posted: 1/2/2023 12:47:37 PM EST
[#26]
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Originally Posted By planemaker:


You may be thinking about this wrong. It can be a short-term fix while you are making your way thru other issues. Any help you can get is help you should take. It will likely help you to get to your longer-term goals/objectives faster and you can drop it any time you like.
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That's a fair point and one I'll consider.
Link Posted: 1/4/2023 4:55:25 PM EST
[#27]
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Originally Posted By arowneragain:


I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.
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Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.
Link Posted: 1/4/2023 5:09:46 PM EST
[#28]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:


That is a known problem with some people.

My sleep study with BiPap showed I need 13 call me of pressure to keep breathing. I slept 6 hours and for the first time in over 2.5 years woke up almost refreshed.

I put my CPAP ( have been unable to sleep with it once for over a year ) on 13 cm yesterday and simply could not breath out when I relaxed trying to fall asleep. The only way I slept with it in the sleep study was the tech slowly manually increased the pressure. Letting the machine do it kept waking me up and me ripping off the mask.

I really do not think this is going to work for me. In the last 2.5 years I developed coronary calcium and an incomplete right bundle branch block ( arrhythmia ) . I need to get this sleep apnea fixed or it will kill me. I have already lost 26 pounds and it helped a little but not enough. I am 5’ 10” and 170 so not over weight.

I think I just need to accept that I will not live that long.
View Quote


Keep working at it. See if your doctor or the device manufacturer has any advice. It took me weeks before I was really fully comfortable with my CPAP.
Link Posted: 1/4/2023 5:30:08 PM EST
[#29]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.
View Quote View All Quotes
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Originally Posted By Mach:
Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.


Several systems have a ramp feature that lets you slowly ramp up the pressure. That is probably what you need.
Link Posted: 1/4/2023 8:49:29 PM EST
[#30]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By macros73:


Keep working at it. See if your doctor or the device manufacturer has any advice. It took me weeks before I was really fully comfortable with my CPAP.
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Originally Posted By macros73:
Originally Posted By Mach:


That is a known problem with some people.

My sleep study with BiPap showed I need 13 call me of pressure to keep breathing. I slept 6 hours and for the first time in over 2.5 years woke up almost refreshed.

I put my CPAP ( have been unable to sleep with it once for over a year ) on 13 cm yesterday and simply could not breath out when I relaxed trying to fall asleep. The only way I slept with it in the sleep study was the tech slowly manually increased the pressure. Letting the machine do it kept waking me up and me ripping off the mask.

I really do not think this is going to work for me. In the last 2.5 years I developed coronary calcium and an incomplete right bundle branch block ( arrhythmia ) . I need to get this sleep apnea fixed or it will kill me. I have already lost 26 pounds and it helped a little but not enough. I am 5’ 10” and 170 so not over weight.

I think I just need to accept that I will not live that long.


Keep working at it. See if your doctor or the device manufacturer has any advice. It took me weeks before I was really fully comfortable with my CPAP.


I am over 2 years. Have not slept with it more than 2 hours. I have tried everything. I am going to try this bipap but I doubt I will be able to sleep with it
Link Posted: 1/4/2023 8:50:46 PM EST
[#31]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By planemaker:


Several systems have a ramp feature that lets you slowly ramp up the pressure. That is probably what you need.
View Quote View All Quotes
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Discussion ForumsJump to Quoted PostQuote History
Originally Posted By planemaker:
Originally Posted By Mach:
Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.


Several systems have a ramp feature that lets you slowly ramp up the pressure. That is probably what you need.


tried that, doesnt help. when the pressure starts even with the ramp i wake up not able to breath
Link Posted: 1/4/2023 11:13:24 PM EST
[#32]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:


tried that, doesnt help. when the pressure starts even with the ramp i wake up not able to breath
View Quote View All Quotes
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Originally Posted By Mach:
Originally Posted By planemaker:
Originally Posted By Mach:
Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.


Several systems have a ramp feature that lets you slowly ramp up the pressure. That is probably what you need.


tried that, doesnt help. when the pressure starts even with the ramp i wake up not able to breath


Not able to breath or not able to exhale? A CPAP machine is designed to help you breathe in. Some machines have a sensor and fast enough response to lower the pressure on exhale so you're not fighting it.

Another common complaint is that some machines just can't deliver enough air. This is frequently true for small, travel sized units. They just can't push enough air down the tube to keep up with a deep breath. One of the units I read about will shut itself down if you breathe in too quickly.

Finding the right mask is also trial-and-error. It's why there's so many of them on the market.
Link Posted: 1/5/2023 5:32:45 AM EST
[#33]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By planemaker:


Not able to breath or not able to exhale? A CPAP machine is designed to help you breathe in. Some machines have a sensor and fast enough response to lower the pressure on exhale so you're not fighting it.

Another common complaint is that some machines just can't deliver enough air. This is frequently true for small, travel sized units. They just can't push enough air down the tube to keep up with a deep breath. One of the units I read about will shut itself down if you breathe in too quickly.

Finding the right mask is also trial-and-error. It's why there's so many of them on the market.
View Quote View All Quotes
View All Quotes
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By planemaker:
Originally Posted By Mach:
Originally Posted By planemaker:
Originally Posted By Mach:
Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.


Several systems have a ramp feature that lets you slowly ramp up the pressure. That is probably what you need.


tried that, doesnt help. when the pressure starts even with the ramp i wake up not able to breath


Not able to breath or not able to exhale? A CPAP machine is designed to help you breathe in. Some machines have a sensor and fast enough response to lower the pressure on exhale so you're not fighting it.

Another common complaint is that some machines just can't deliver enough air. This is frequently true for small, travel sized units. They just can't push enough air down the tube to keep up with a deep breath. One of the units I read about will shut itself down if you breathe in too quickly.

Finding the right mask is also trial-and-error. It's why there's so many of them on the market.



It feels like I can't breath out, but I am waking up so I don't know what is really happening. Feels like my lungs fill up, I breath out less than I breath in and then my lungs are full and I can't breath out.

So far for the last 2 years even the sleep doctor is of no help.

I have tried every variation of mask that exist.
nasal pillows
nasal mask
full face mask
full face mask under nose
bigger full face mask
tube off the top of my head

They all cramp the muscles in my face. ( Due to COVID or Lyme or both or something else, I have neuropathy all over my body head to toe that results in painfully tight muscles and painful contracting muscle cramps including my rib cage. I also have Small Fiber Neuropathy. Some type of infection has damaged most of my small fiber neurons in my skin and muscles). And now within the last 2 months, I have an Incomplete Right Bundle Branch Block in my heart that showed up a month after i got over COVID in September.  It feels like I am slowly dying.

I think the mask makes it worse in my face, just like my shoes make my feet worse, or walking, or sleeping
Link Posted: 1/5/2023 11:30:13 AM EST
[Last Edit: planemaker] [#34]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:



It feels like I can't breath out, but I am waking up so I don't know what is really happening. Feels like my lungs fill up, I breath out less than I breath in and then my lungs are full and I can't breath out.

So far for the last 2 years even the sleep doctor is of no help.

I have tried every variation of mask that exist.
nasal pillows
nasal mask
full face mask
full face mask under nose
bigger full face mask
tube off the top of my head

They all cramp the muscles in my face. ( Due to COVID or Lyme or both or something else, I have neuropathy all over my body head to toe that results in painfully tight muscles and painful contracting muscle cramps including my rib cage. I also have Small Fiber Neuropathy. Some type of infection has damaged most of my small fiber neurons in my skin and muscles). And now within the last 2 months, I have an Incomplete Right Bundle Branch Block in my heart that showed up a month after i got over COVID in September.  It feels like I am slowly dying.

I think the mask makes it worse in my face, just like my shoes make my feet worse, or walking, or sleeping
View Quote View All Quotes
View All Quotes
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:
Originally Posted By planemaker:
Originally Posted By Mach:
Originally Posted By planemaker:
Originally Posted By Mach:
Originally Posted By arowneragain:
Originally Posted By cherenkov:

If you have to wear a CPAP mask it isn't goin gto ruin your life.  You can and will get used to it within a few weeks of wearing it.




I deeply disagree. The only way I’m going to spend 1/3 of my life (the 1/3 where I’m closest to my wife) with an octopus clamped to my face is if it’s a severe medical necessity in the short term. Surgery would be FAR less invasive in the short term. Weigh loss isn’t a huge big deal. I lost a ton of weight in 2021 and gained a very small amount back in 2022. Of course, weight loss discipline was easier before the brain fog started but I actually did lose more after the brain fog started. Just struggle with staying focused on it.

Further, I used to live with someone with a cpap and have traveled with them 3+ weeks in the last 3 years. They have a newer-tech machine but traveling with them is a huge pain (for them) and the machine noise is very noticeable if you’re in the next room when they remove their mask. Doubly so if you’re camping and they’re in a tent. I’ve travelled internationally with less gear than they pack for a single overnight trip now (machine, backup battery, mask, hoses, distilled water, dc adapter).

I was, best I remember, down from 277 to ~240 when the brain fog started. Got down to 213 in February 2022. Went from strict keto to a mere ‘low carb’ diet and immediately had a water-weight/glycogen bounce to 225. Through the rest of the year I went to about 228 and through the holidays have jumped to 234 this morning.

During this time I’ve realistically added a couple pounds of muscle. My target right now is to drop 15 pounds of actual fat and add some muscle and end up close to 220.

I’d consider another sleep study after that. But that’s not my immediate concern. Given the myriad other symptoms outlined in this thread I think it’s entirely possible that the hypopneas are complicating the problem but there’s very little chance that they’re *driving* it. And even if they are, a cpap wouldn’t fix the problem, it would just replace it with a different problem.

I don’t say that to be critical of the technology. I have no doubt that it helps people and believe it could possibly help me. But it’s an ‘easy button’ I’m not willing to hit just yet. I’d rather make a serious effort to quantify how much improvement I can make with diet/exercise/sleep position improvement *then* look at both surgery and cpap as increasingly invasive options, but all of these in the context of continuing to pursue brain fog treatment.


I just had a titration sleep study  in the hospital with a BiPap.

I have obstructive apneas, central apneas, hypopneas, and RERAs and the bipap fixed all of it.

Getting to sleep with it was the issue, the tech had to manually slow the pressure increase to keep me from waking up and ripping the mask off my face.

But when I finally was asleep with the BiPap i had zero events.

I honestly dont think i will ever sleep with a mask on my face. I will probably just die early.


Several systems have a ramp feature that lets you slowly ramp up the pressure. That is probably what you need.


tried that, doesnt help. when the pressure starts even with the ramp i wake up not able to breath


Not able to breath or not able to exhale? A CPAP machine is designed to help you breathe in. Some machines have a sensor and fast enough response to lower the pressure on exhale so you're not fighting it.

Another common complaint is that some machines just can't deliver enough air. This is frequently true for small, travel sized units. They just can't push enough air down the tube to keep up with a deep breath. One of the units I read about will shut itself down if you breathe in too quickly.

Finding the right mask is also trial-and-error. It's why there's so many of them on the market.



It feels like I can't breath out, but I am waking up so I don't know what is really happening. Feels like my lungs fill up, I breath out less than I breath in and then my lungs are full and I can't breath out.

So far for the last 2 years even the sleep doctor is of no help.

I have tried every variation of mask that exist.
nasal pillows
nasal mask
full face mask
full face mask under nose
bigger full face mask
tube off the top of my head

They all cramp the muscles in my face. ( Due to COVID or Lyme or both or something else, I have neuropathy all over my body head to toe that results in painfully tight muscles and painful contracting muscle cramps including my rib cage. I also have Small Fiber Neuropathy. Some type of infection has damaged most of my small fiber neurons in my skin and muscles). And now within the last 2 months, I have an Incomplete Right Bundle Branch Block in my heart that showed up a month after i got over COVID in September.  It feels like I am slowly dying.

I think the mask makes it worse in my face, just like my shoes make my feet worse, or walking, or sleeping


Yikes. That just sucks rocks. I hope you can find a way out of all that mess. Not sure if there's anything any of us can do to help but if there is, just ask.

ETA: This is an interesting development:

Near Infrared Light (940nm) Improves COVID Outcomes: Exciting Randomized Control Trial


and

Near Infrared Light Reduces Inflammation via TLR4 In Vitro


and a more general:

Sunlight: Optimize Health and Immunity (Light Therapy and Melatonin)


Not sure any of that would do anything for your situation but it probably wouldn't hurt, either.
Link Posted: 1/5/2023 12:06:36 PM EST
[#35]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By planemaker:


Finding the right mask is also trial-and-error. It's why there's so many of them on the market.
View Quote


Given that pumps and electronics wear out, technology changes, and there are consumable/disposable parts to buy and buy again, and the grossly inflated retail prices of med devices, I honestly don't see how CPAP is considered a good long term approach to this problem. At some point the NPV of a one-time surgery has to be lower than the NPV of predicted future costs (plus the constant doctor revisits and new sleep studies you'd need to keep your prescription current).

CPAP/BIPAP really looks like a giant cash cow.
Link Posted: 1/5/2023 1:38:41 PM EST
[Last Edit: DDalton] [#36]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By TheRealSundance:
I would go to a Dr that specializes in Apena to get it checked out.  
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Yes, it's unfortunate that you didn't see a pulmonologist in regards to the sleep study.  My apnea testing was a parallel process that was happening while I was doing the electrophysiology and cardiologist testing process, and I got a pulmonologist to deal with the apnea.

I weighed 245 when I decided I needed to lose weight.  Down about 10 pounds, a weird thing happened while exercising, and led me to cardiologist, who referred me for apnea testing. By the time I got my sleep study I was down to about 220 (like you I didn't feel like I had slept 2 hours due to the strange bed and extreme discomfort).  By the time I got my appt with the pulmonologist I was down to around 210... they had determined I had mild apnea, needing a setting of 6 and the CPAP would only go down to 4, and he told me that he wanted to do trial 3 months on an autopap, but that if I lost another 15 or so pounds I may not even need the machine.  That's pretty much how it worked out - somewhere in the 190s I started pulling the mask off at night and in the 180s I was sleeping better without the thing (I have anxiety, and trying to fall asleep while breathing against the pressure made me start to hyperventilate).  So after the 90 days I told him I was sleeping well without and he said "ok, I'm not here to make you wear it, just to make sure you have what you need if I can help."

I'm back up to 210# (down from 220 in Nov), and I finally think I figured out my issue.  My dentist (new about the time I had heart issues) had been pestering me about clenching my jaw, probably at night, and that effecting my overbite to crack the enamel of lower teeth at the gumline.  I blew him off, he wanted me to do a $4k tray system and was putting the hard sell on me.  But over the next few years my jaw is always sore and tense...wondered why.  One night I was laying there trying to go to sleep (side sleeper) and realized I had tension in my jaw, me holding it in place, and if I relaxed it, it shifted right (with gravity) and that happening pulled my facial skin causing one of my nostrils to close. Eureka. So, I got a molded mouthguard deal to try to keep my lower jaw in alignment and keep me breathing...haven't tried it yet because it's pretty uncomfortable on the couch, but crossing my fingers will try it tonight.

Food for thought. Hope you get this figured out. I ended up at a rheumatologist about 10 years ago...talk about witchcraft. I came out with a high positive on a protein test for rheumatoid, though I'm asymptomatic for rheumatoid (which wasn't clear to me at the time because I also have some significant osteoarthritis), so I've been on arthritis meds as a preventative.

eta I'm sleeping much better (turning alarm off and sleeping past it) since I quit my high-stress job in October . Before, I would be laying waiting for the 4:45 am alarm.
Link Posted: 1/5/2023 2:28:51 PM EST
[#37]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By arowneragain:


Given that pumps and electronics wear out, technology changes, and there are consumable/disposable parts to buy and buy again, and the grossly inflated retail prices of med devices, I honestly don't see how CPAP is considered a good long term approach to this problem. At some point the NPV of a one-time surgery has to be lower than the NPV of predicted future costs (plus the constant doctor revisits and new sleep studies you'd need to keep your prescription current).

CPAP/BIPAP really looks like a giant cash cow.
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Originally Posted By arowneragain:
Originally Posted By planemaker:


Finding the right mask is also trial-and-error. It's why there's so many of them on the market.


Given that pumps and electronics wear out, technology changes, and there are consumable/disposable parts to buy and buy again, and the grossly inflated retail prices of med devices, I honestly don't see how CPAP is considered a good long term approach to this problem. At some point the NPV of a one-time surgery has to be lower than the NPV of predicted future costs (plus the constant doctor revisits and new sleep studies you'd need to keep your prescription current).

CPAP/BIPAP really looks like a giant cash cow.


It's certainly a giant cash cow for the sleep doctors who generally are also DME providers. However, there's no guarantee that surgery will fix the problem either. There are a few dentists now that are getting in on the act selling certain dental appliances that are supposed to work for people with mild obstructive apnea. The claim is they work as well as a CPAP for people that can't tolerate CPAP machines for whatever reason.
Link Posted: 1/17/2023 3:59:33 PM EST
[#38]
So, appt#2 was today. Not much to say. We discussed lab results, had an animated discussion of sleep apnea but came to an understanding. Doc agrees that losing weight is an acceptable first strategy there and it isn't likely to be what's causing my brain fog anyway.

She Rx'ed a round of Doxycycline for the RMSF. She suggested seeing an ENT about the sleep apnea (I agreed to do that after trying to lose weight and made it clear that I didn't see it as a driver of the brain fog, and wanted to be certain that we focused on that, and its most likely cause). She also suggested that the autoimmune markers indicated that I needed to see a rheumatologist. Again....ehhh, maybe at some point, but I don't think it's causing the main problem, and neither did she.

That left us with 'ok, what do we do'. There's basically no real approved, documented treatment for post-covid brain fog. So, again, We discussed HBOT. I provided studies.

She's going to discuss it (I provided links to studies) with the head doc there (technically I think the lady I saw today is a NP) and ask her to weigh in on whether she's willing to Rx this and whether the local hospital is willing to allow it (since it isn't FDA approved yet).

Not much else to add. Symptoms continue with no notable changes. In light of the sleep study I have made a bunch of changes to how I sleep (darker, colder room with white noise, slightly positive air pressure) and I have taken melatonin a few times. That actually does seem to help me sleep faster.

Next step, other than the Doxycyclene, is to see what the head doc says about HBOT. I'm scheduled to take that back up with her in March unless she greenlights the idea sooner.

Link Posted: 1/17/2023 4:52:49 PM EST
[#39]
Reach out to Dr Bruce Patterson, he's working with clinics all over the world now and having a lot of success.
Link Posted: 1/17/2023 5:12:05 PM EST
[#40]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mr_Woodsy:
Reach out to Dr Bruce Patterson, he's working with clinics all over the world now and having a lot of success.
View Quote


I googled him. Looking into that. Of course, he only works through referrals, so I'd have to get that.
Link Posted: 1/17/2023 5:27:56 PM EST
[#41]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By arowneragain:


I googled him. Looking into that. Of course, he only works through referrals, so I'd have to get that.
View Quote

He's running the lab and coming up with the testing and treatment protocols but he's working with clinics all over.
https://incelldx.com/
Link Posted: 1/17/2023 5:54:05 PM EST
[#42]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By arowneragain:
So, appt#2 was today. Not much to say. We discussed lab results, had an animated discussion of sleep apnea but came to an understanding. Doc agrees that losing weight is an acceptable first strategy there and it isn't likely to be what's causing my brain fog anyway.

She Rx'ed a round of Doxycycline for the RMSF. She suggested seeing an ENT about the sleep apnea (I agreed to do that after trying to lose weight and made it clear that I didn't see it as a driver of the brain fog, and wanted to be certain that we focused on that, and its most likely cause). She also suggested that the autoimmune markers indicated that I needed to see a rheumatologist. Again....ehhh, maybe at some point, but I don't think it's causing the main problem, and neither did she.

That left us with 'ok, what do we do'. There's basically no real approved, documented treatment for post-covid brain fog. So, again, We discussed HBOT. I provided studies.

She's going to discuss it (I provided links to studies) with the head doc there (technically I think the lady I saw today is a NP) and ask her to weigh in on whether she's willing to Rx this and whether the local hospital is willing to allow it (since it isn't FDA approved yet).

Not much else to add. Symptoms continue with no notable changes. In light of the sleep study I have made a bunch of changes to how I sleep (darker, colder room with white noise, slightly positive air pressure) and I have taken melatonin a few times. That actually does seem to help me sleep faster.

Next step, other than the Doxycyclene, is to see what the head doc says about HBOT. I'm scheduled to take that back up with her in March unless she greenlights the idea sooner.

View Quote

I wish you the best of luck getting treatment that works.
Link Posted: 1/17/2023 11:26:19 PM EST
[#43]
Very interesting.

I have many of the same symptoms and had the small fiber neuron biopsy and have small fiber neuropathy.
Link Posted: 1/18/2023 9:46:40 AM EST
[#44]
Big unexpected update:

The NP and the neuro doc discussed the research info I sent them, last night, and agreed to greenlight the HBOT treatment. They're calling the hospital today to see if the hospital will allow it and then they'll either let me know they said no or someone from the hospital will call me to schedule.

This is a very positive development, IMO.

Link Posted: 1/18/2023 9:50:50 AM EST
[#45]
awesome man
Link Posted: 1/18/2023 10:08:03 AM EST
[#46]
Just went through this, neuro, labs, brain CT, neuropsych. I have SLE and Sjogrens but Rheumatologist says disease activity shown by labs doesn't support that my brain fog is auto-immune related. Neuropsych said the issues shown are normal for a guy with my baggage and not likely to cause brain fog. Had Covid around Xmas 2021 but kicked its ass with early monoclonal antibody infusion and bc I'm on maintenance HCQ for SLE already.  Very frustrating. Best of luck.
Link Posted: 1/18/2023 1:31:40 PM EST
[#47]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:



It feels like I can't breath out, but I am waking up so I don't know what is really happening. Feels like my lungs fill up, I breath out less than I breath in and then my lungs are full and I can't breath out.


I think the mask makes it worse in my face, just like my shoes make my feet worse, or walking, or sleeping
View Quote


Something you might try is to wear your mask for 10 or 15 minutes before you try to sleep.

You might also try reducing the pressure.  What is your pressure at?  Maybe set as low as 9 or 10 mm.

I have used a cpap for 17 years.  Still using the original prescribed.
Link Posted: 1/18/2023 5:46:35 PM EST
[#48]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By arowneragain:


I’m not vaxed, fwiw.

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Originally Posted By arowneragain:
Originally Posted By S13:
Yeah.  It isnt covid.   It us the vax weakening the immune system and allowing those viruses to thrive and not be fought off in those people.


I’m not vaxed, fwiw.



My symptoms started June 2020 after probable COVID Feb and Mar 2020, long before the Vax was even available.
Link Posted: 1/18/2023 5:53:40 PM EST
[#49]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By arowneragain:
Big unexpected update:

The NP and the neuro doc discussed the research info I sent them, last night, and agreed to greenlight the HBOT treatment. They're calling the hospital today to see if the hospital will allow it and then they'll either let me know they said no or someone from the hospital will call me to schedule.

This is a very positive development, IMO.

View Quote


do you have links to the research?
Link Posted: 1/18/2023 7:38:11 PM EST
[#50]
Discussion ForumsJump to Quoted PostQuote History
Originally Posted By Mach:


do you have links to the research?
View Quote


@Mach

These are the three articles I shared with the neurologist:

https://www.nature.com/articles/s41598-022-15565-0

https://connect.uclahealth.org/2022/08/24/hbot-a-potential-treatment-for-those-with-long-covid-19/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8806311/
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