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Posted: 11/8/2022 11:51:36 PM EDT
Figured I'd document what, if anything, comes of it.
Today was an intro visit. Saw a NP, not the actual neuro doc. She said they've seen lots of brain fog patients, my symptoms were common, but honestly on the low end of the spectrum as far as severity. They scheduled some blood tests (lab drew blood today) and an MRI (scheduled for ~2 weeks out) and a sleep study (date TBD) to rule out the big, obvious things. After that they'll probably call it post-covid brain fog and discuss treatment. I asked about the possibility of HBOT and they said they'd be happy to try it, in time. Updating this thread will happen slowly. |
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Posted: 11/9/2022 12:42:43 AM EDT
[#1]
Hope you improve soon OP
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Posted: 11/9/2022 1:05:53 AM EDT
[#2]
Hope you find out what's wrong and recover.
Took my dad about a year to recover 95% from the brain fog. When he had it feb 2020. |
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Posted: 11/9/2022 1:17:13 AM EDT
[#3]
Good luck, I hope they can find out what is up and help you out.
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WY, USA
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Posted: 11/9/2022 2:21:48 AM EDT
[#4]
Quote HistoryOriginally Posted By Spleenless-Dave: Good luck, I hope they can find out what is up and help you out. +1 |
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Posted: 11/9/2022 8:56:41 AM EDT
[#5]
Please accept my sincere prayers that it is nothing major/something fully treatable.
Just FYI, I went through something similar post-COVID that ended up being unrelated to my then-recent COVID experience. In my case, it was a very high blood ammonia level caused by liver disease (NASH) that was still undiagnosed/unknown to me at the time. |
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Posted: 11/9/2022 9:50:37 AM EDT
[#6]
Hope they can help you.
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Posted: 11/9/2022 11:26:34 AM EDT
[#7]
OP, hope you get it taken care of.
What are the actual symptoms? |
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Posted: 11/9/2022 11:36:43 AM EDT
[#8]
Quote HistoryOriginally Posted By S13: OP, hope you get it taken care of. What are the actual symptoms? 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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Posted: 11/9/2022 11:51:18 AM EDT
[#9]
Quote HistoryOriginally 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. Quote HistoryOriginally Posted By arowneragain: Originally Posted By S13: OP, hope you get it taken care of. What are the actual symptoms? 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. That sucks. I hope it clears up. |
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OK, USA
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Posted: 11/9/2022 8:17:26 PM EDT
[#10]
Ive heard of some really weird stuff post covid. I lost vision in one eye for many months but it came back.
Good luck OP |
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MN, USA
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Posted: 11/10/2022 1:37:55 PM EDT
[#11]
Have they checked your upper sinuses for blockages? I had that going on and it was a massive pain in my head and ass. They were able to pinpoint it from ct and some other imaging.
Antibiotics helped but what really made a difference was using a navage brand booger sucker nasal rinse thing. Used that every day for a couple weeks and it slowly cleared out. Apparently I have super small nasal passages from my upper sinuses. Meeting with a doctor to see if anything else can be done because it came back a second time months later after I stopped the rinses. |
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Posted: 11/12/2022 8:13:59 PM EDT
[#12]
Update:
Another lab came back. B12 is on the lower end of the normal range, and my Folate levels are below the reference range to the point of being 'low'. (Folate was 2.3, IIRC, and B12 was 400ish, IIRC). If anyone has any experience with low levels of either of those, I'd love to hear it. Did diet help? I already eat red meat, greens, cheese, and eggs. Apparently I either don't eat enough or my body doesn't process it well enough. Apparently this is a common post-covid thing, too. |
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Posted: 11/12/2022 10:02:16 PM EDT
[#13]
Quote HistoryOriginally Posted By arowneragain: Update: Another lab came back. B12 is on the lower end of the normal range, and my Folate levels are below the reference range to the point of being 'low'. (Folate was 2.3, IIRC, and B12 was 400ish, IIRC). If anyone has any experience with low levels of either of those, I'd love to hear it. Did diet help? I already eat red meat, greens, cheese, and eggs. Apparently I either don't eat enough or my body doesn't process it well enough. Apparently this is a common post-covid thing, too. He was low also. We told him about the color change of his pee but he was still shocked. 
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Posted: 11/14/2022 10:08:26 AM EDT
[#14]
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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Posted: 11/14/2022 10:44:25 AM EDT
[#15]
Well it might be RMSF and not long Covid. That actually sounds more plausible.
Have you had a tick bite? |
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Posted: 11/14/2022 10:47:33 AM EDT
[#16]
Quote HistoryOriginally Posted By S13: Well it might be RMSF and not long Covid. That actually sounds more plausible. Have you had a tick bite? The last bite I remember having would have been in April of this year, in turkey season, and I don't remember any symptoms changing after that, for better or worse. The last before that would have probably been the previous spring, long before the brain fog started. One of my fears here is that they'll start finding other things and assume that all my problems are because of the other things. I mean, yeah, I want to address it all, but I don't want them to lose sight of the fact that this all started immediately post-covid. |
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Posted: 11/18/2022 4:04:43 PM EDT
[#17]
Another test result:
I have low vitamin D levels. I doubt that fixing this makes a radical change, but I’ll certainly try. Had the MRI today. Now I wait for results. |
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Posted: 11/18/2022 4:42:12 PM EDT
[#18]
Quote HistoryOriginally Posted By arowneragain: Another test result: I have low vitamin D levels. I doubt that fixing this makes a radical change, but I'll certainly try. Had the MRI today. Now I wait for results. |
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Posted: 12/6/2022 5:41:03 PM EDT
[#19]
So this isn't much of an update but it's sort of funny.
I have markers for Lyme, RMSF, autoimmune issues, and I forget what all else. Well, some of those tests have a built-in trigger where if you have an anomaly (like, they run five tests and 1 is positive and the rest are negative) they automatically redo the tests to confirm the results. I assume there's enough extra blood drawn to handle this. Well, we paid almost $600 for the initial lab work. They sent me a bill for almost $500 more for the additional tests.  My sleep study is next weekend. After that I will call the neuro and try to get them to push my next appt up as much as possible so we can proceed with the process. |
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NC, USA
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Posted: 12/6/2022 6:02:33 PM EDT
[#20]
Quote HistoryOriginally Posted By akcaribouhunter: Dad is taking a b complex vitamin and it seems to help. He was low also. We told him about the color change of his pee but he was still shocked. shocker for me was the damn smell. You could smell my vitamin pee from down the hall. I could walk into the bathroom 15 minutes later and smell it. OP, hope you get this sorted out (including the extra $ charged  )
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Posted: 12/6/2022 8:54:08 PM EDT
[Last Edit: markhateen]
[#21]
My wife has suffered from the same exact thing( including the positive RMSF test which we thought was weird as she didn't have symptoms) since a neuro event (cortical wave depression)in Sept. of 2020
She was diagnosed with POTS and also developed Visual Snow Syndrome. It's been fucking crazy. You aren't alone out there. They've now prescribed a steroid and salt as the new headache treatment along with propranolol. Her team of doctors has floated a nerve block. One note of caution is if they ask about a lumbar puncture, she had one done which amplified the symptoms. |
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Posted: 12/7/2022 8:33:50 AM EDT
[#22]
Quote HistoryOriginally Posted By arowneragain: Update: Another lab came back. B12 is on the lower end of the normal range, and my Folate levels are below the reference range to the point of being 'low'. (Folate was 2.3, IIRC, and B12 was 400ish, IIRC). If anyone has any experience with low levels of either of those, I'd love to hear it. Did diet help? I already eat red meat, greens, cheese, and eggs. Apparently I either don't eat enough or my body doesn't process it well enough. Apparently this is a common post-covid thing, too. |
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Posted: 12/7/2022 10:32:59 AM EDT
[#23]
Quote HistoryOriginally Posted By SSF556: Do you take anything for acid reflux? No. I’ve had very minor AR issues over the years but a better diet stopped it. |
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Posted: 12/8/2022 10:35:28 AM EDT
[Last Edit: Mach]
[#24]
Quote HistoryOriginally Posted By arowneragain: So this isn't much of an update but it's sort of funny. I have markers for Lyme, RMSF, autoimmune issues, and I forget what all else. Well, some of those tests have a built-in trigger where if you have an anomaly (like, they run five tests and 1 is positive and the rest are negative) they automatically redo the tests to confirm the results. I assume there's enough extra blood drawn to handle this. Well, we paid almost $600 for the initial lab work. They sent me a bill for almost $500 more for the additional tests. My sleep study is next weekend. After that I will call the neuro and try to get them to push my next appt up as much as possible so we can proceed with the process. @arowneragain What markers do you have for Lyme? What tests were done? I have had something very similiar for over 2 years, did the standar PCR tests for tick diseases at Quest Diagnostics and lyme antibodies, all negative. But i am still getting worse. I have been diagnosed with Post Viral Syndrome from COVID, Lyme, or some other unknown tick or respiratory diease, but am not being treated except for vitamins and pain killers and I am not getting better. Now they find an Incomplete Right Branch Heart Block with a 400 ms delay. ie. a heart arrythmia and I am still getting nowhere on getting better. |
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Posted: 12/8/2022 10:57:37 AM EDT
[#25]
Quote HistoryOriginally Posted By Mach: @arowneragain What markers do you have for Lyme? What tests were done? My ANA Direct test was positive. My RNP test was positive (my result was 1, the reference range is 0-0.9). My RMSF, IgG, EIA test was 'positive'. My RMSF, IgG, IFA test was 1:256 which is considered positive, with a reference range of less than 1:64. On my Lyme test, I was positive for IgG P23 Ab. But the following line-blot test was negative. So, in theory, I am negative for Lyme. And one of my RMSF tests was negative. But the above list, that's my collection of weird markers.
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Posted: 12/8/2022 11:14:03 AM EDT
[#26]
Quote HistoryOriginally Posted By arowneragain: My ANA Direct test was positive. My RNP test was positive (my result was 1, the reference range is 0-0.9). My RMSF, IgG, EIA test was 'positive'. My RMSF, IgG, IFA test was 1:256 which is considered positive, with a reference range of less than 1:64. On my Lyme test, I was positive for IgG P23 Ab. But the following line-blot test was negative. So, in theory, I am negative for Lyme. And one of my RMSF tests was negative. But the above list, that's my collection of weird markers. Quote HistoryOriginally Posted By arowneragain: Originally Posted By Mach: @arowneragain What markers do you have for Lyme? What tests were done? My ANA Direct test was positive. My RNP test was positive (my result was 1, the reference range is 0-0.9). My RMSF, IgG, EIA test was 'positive'. My RMSF, IgG, IFA test was 1:256 which is considered positive, with a reference range of less than 1:64. On my Lyme test, I was positive for IgG P23 Ab. But the following line-blot test was negative. So, in theory, I am negative for Lyme. And one of my RMSF tests was negative. But the above list, that's my collection of weird markers. Thanks, I will have to look to see if I was tested for any of that. |
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Posted: 12/9/2022 2:21:05 AM EDT
[#27]
Shit man I feel bad for you. I hope you find out the fix for all this
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WA, USA
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Posted: 12/9/2022 10:38:29 AM EDT
[#28]
reach out to Bruce Patterson. He's been doing great work and working with clinics all over the world now.
https://twitter.com/brucep13 https://incelldx.com/ |
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Posted: 12/16/2022 10:20:25 PM EDT
[#29]
Sleep study tonight. Woohoo.
 
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Posted: 12/17/2022 10:36:34 AM EDT
[#30]
Minor update:
Of course, the sleep study tech can't tell me anything, but if I do have sleep apnea, it's mild enough that they didn't wake me mid-study and start trying to fit a mask to my face. Apparently that's a common thing, and if I have it, it's not *that* bad. *shrug* |
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Posted: 12/17/2022 4:07:58 PM EDT
[#31]
Quote HistoryOriginally Posted By arowneragain: Minor update: Of course, the sleep study tech can't tell me anything, but if I do have sleep apnea, it's mild enough that they didn't wake me mid-study and start trying to fit a mask to my face. Apparently that's a common thing, and if I have it, it's not *that* bad. *shrug* The implanted heart monitor picked up the apnea. |
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Posted: 12/27/2022 12:37:20 PM EDT
[#32]
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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Posted: 12/27/2022 1:31:51 PM EDT
[#33]
Quote HistoryOriginally 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? Try out the Cpap. The good thing is it is non invasive and it cant harm. It doesnt work just dont use it I use it every night. Not a big deal. Taking it on trips is the biggest hassle. It may solve the issue. |
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Posted: 12/27/2022 2:09:13 PM EDT
[#34]
Quote HistoryOriginally Posted By S13: Try out the Cpap. The good thing is it is non invasive and it cant harm. It doesnt work just dont use it I use it every night. Not a big deal. Taking it on trips is the biggest hassle. It may solve the issue. If it's 100% obstructive, I assure you, I will. But I strongly suspect that mine isn't (primarily) obstructive. And the brain fog didn't develop slowly over time as it should if it was caused by apnea. |
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Posted: 12/27/2022 2:22:37 PM EDT
[#35]
Quote HistoryOriginally Posted By arowneragain: If it's 100% obstructive, I assure you, I will. But I strongly suspect that mine isn't (primarily) obstructive. And the brain fog didn't develop slowly over time as it should if it was caused by apnea. Mine was not bad. as a matter of fact it was on the VERY low scale. But apparently it was enough to cause me morning headaches and brain fog. When I DONT use it, I feel it. My brain feels it. Also it lowered my BP. |
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Posted: 12/27/2022 5:32:21 PM EDT
[#36]
Quote HistoryOriginally 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? I've enjoyed and disliked a lot of your posts over the years; I'm really sorry for your situation and I honestly hope it resolves soon. I don't have any medical input but please get better soon man.  |
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FL, USA
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Posted: 12/27/2022 5:58:37 PM EDT
[#37]
I was diagnosed with sleep apnea.
I got the cpap but it didn't seem to help. Cutting out diet coke helped the most. Not caffeine. Just diet coke. I haven't lost a pound and I stopped snoring. Wierd. |
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Posted: 12/27/2022 6:26:45 PM EDT
[Last Edit: Mach]
[#38]
Quote HistoryOriginally 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? I doubt you will get those answers. The only answer is wear this mask. I have been at this for over 2 years. I have obstructive apnea, cental apnea, hypopnea, and RERAs. My AHI was 16 on my side until I lost 26 pounds. Now I am 170, 5' 10", then it went down to 5 on my side, but still 72 on my back. The doc actually made the suggestion that I just don't sleep on my back even though my RDI is still 17 on my side and well over 72 on my back with completely fractured sleep. That doesn't work for the FAA, I have to get this fixed. have not been able to sleep with an APAP for over 2 years. Not once. I just had a sleep study in the hospital and slept soundly with a BiPaP. I woke up almost refreshed ( didn't feel exhausted ) for the first time in over 2 years. This whole thing has been a joke and now I have an arrhythmia. Now I wonder how long it will take to get a BiPaP that I can actually sleep with. |
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Posted: 12/27/2022 6:29:54 PM EDT
[#39]
Quote HistoryOriginally Posted By arowneragain: If it's 100% obstructive, I assure you, I will. But I strongly suspect that mine isn't (primarily) obstructive. And the brain fog didn't develop slowly over time as it should if it was caused by apnea. Quote HistoryOriginally Posted By arowneragain: Originally Posted By S13: Try out the Cpap. The good thing is it is non invasive and it cant harm. It doesnt work just dont use it I use it every night. Not a big deal. Taking it on trips is the biggest hassle. It may solve the issue. If it's 100% obstructive, I assure you, I will. But I strongly suspect that mine isn't (primarily) obstructive. And the brain fog didn't develop slowly over time as it should if it was caused by apnea. The fix for obstructive, central, hypopnea, and RERAs are all the same thing. The mask. I also have brain fog, loss of concentration ability, neuropathy, and fatigue. |
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Posted: 12/27/2022 6:32:09 PM EDT
[#40]
Not to make light of this but any chance it's some kind of allergy or nasal problem?
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WA, USA
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Posted: 12/29/2022 3:12:05 AM EDT
[#41]
Quote HistoryOriginally Posted By Mach: The fix for obstructive, central, hypopnea, and RERAs are all the same thing. The mask. I also have brain fog, loss of concentration ability, neuropathy, and fatigue. Quote HistoryOriginally Posted By Mach: Originally Posted By arowneragain: Originally Posted By S13: Try out the Cpap. The good thing is it is non invasive and it cant harm. It doesnt work just dont use it I use it every night. Not a big deal. Taking it on trips is the biggest hassle. It may solve the issue. If it's 100% obstructive, I assure you, I will. But I strongly suspect that mine isn't (primarily) obstructive. And the brain fog didn't develop slowly over time as it should if it was caused by apnea. The fix for obstructive, central, hypopnea, and RERAs are all the same thing. The mask. I also have brain fog, loss of concentration ability, neuropathy, and fatigue. I believe that throat surgery, tonsil removal, etc is sometimes indicated for obstructive sleep apnea. I agree with OP that mild sleep apnea is likely not a primary cause of his brain fog. Especially, given the time dimension of the brain fogs appearance. I have friends with post covid/post vaccine neurological and auto immune issues. Sleep apnea certainly doesn’t help though and 100% needs to be taken seriously. Even simply for the long term cardiac implications. Standard disclaimer, I am not a medical provider and only his medical provider can make that diagnosis. |
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Posted: 12/29/2022 6:24:55 AM EDT
[#42]
Quote HistoryOriginally Posted By Mach: -snip- Now I wonder how long it will take to get a BiPaP that I can actually sleep with. My best friend is a neurologist who wears a BiPaP. He said the worst thing about it was waking feeling up in the morning bloated and burping long and loud to relieve the pressure. Apparently the machine forces air into his stomach as well as his lungs. |
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Posted: 12/29/2022 7:12:42 AM EDT
[#43]
Quote HistoryOriginally Posted By eracer: My best friend is a neurologist who wears a BiPaP. He said the worst thing about it was waking feeling up in the morning bloated and burping long and loud to relieve the pressure. Apparently the machine forces air into his stomach as well as his lungs. Quote HistoryOriginally Posted By eracer: Originally Posted By Mach: -snip- Now I wonder how long it will take to get a BiPaP that I can actually sleep with. My best friend is a neurologist who wears a BiPaP. He said the worst thing about it was waking feeling up in the morning bloated and burping long and loud to relieve the pressure. Apparently the machine forces air into his stomach as well as his lungs. 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. |
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Posted: 12/29/2022 10:37:42 AM EDT
[#44]
Quote HistoryOriginally Posted By Latency: Sleep apnea certainly doesn’t help though and 100% needs to be taken seriously. Agreed, but without a breakdown of my numbers I don’t know if mine is obstructive (fixable with weight loss or surgery) or central (very possibly caused by the brain fog) or sone combination of both, which could be fixed by diet, exercise, and fixing the brain fog, without sentencing my to sleep with an octopus on my face. It really ticks me off. It’s like I had a broke leg and they offered me a crutch but didn’t consider fixing my leg. I don’t want the crutch (long term anyway); I want to walk again. |
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Posted: 12/29/2022 10:39:42 AM EDT
[#45]
Quote HistoryOriginally Posted By Aimless: Not to make light of this but any chance it's some kind of allergy or nasal problem? Certainly. Neuro didn’t seem to think it likely enough to warrant allergy testing yet though. |
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Posted: 12/29/2022 10:43:28 AM EDT
[#46]
Quote HistoryOriginally 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. I’ve lost a lot of weight. Given proper motivation I could probably shed another 20. And that could probably help. I hope you try to learn to sleep with the bipap. It’s worth it. If wearing a mask keeps me alive and (otherwise) healthy longer I’ll do it. |
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Posted: 12/29/2022 12:20:51 PM EDT
[#47]
Quote HistoryOriginally Posted By arowneragain: I’ve lost a lot of weight. Given proper motivation I could probably shed another 20. And that could probably help. I hope you try to learn to sleep with the bipap. It’s worth it. If wearing a mask keeps me alive and (otherwise) healthy longer I’ll do it. Quote HistoryOriginally Posted By arowneragain: 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. I’ve lost a lot of weight. Given proper motivation I could probably shed another 20. And that could probably help. I hope you try to learn to sleep with the bipap. It’s worth it. If wearing a mask keeps me alive and (otherwise) healthy longer I’ll do it. Some machines have a setting that reduces the pressure when it senses you are exhaling. That helps a lot with the issues related to breathing out against the machine. Also, finding the right mask is a trial-and-error process. You have to find one that fits your facial structure (for the nose-cover or nose-mouth-cover types) or works with your nasal passages (nasal pillow type devices). |
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Posted: 12/29/2022 1:11:34 PM EDT
[#48]
Quote HistoryOriginally Posted By eracer: My best friend is a neurologist who wears a BiPaP. He said the worst thing about it was waking feeling up in the morning bloated and burping long and loud to relieve the pressure. Apparently the machine forces air into his stomach as well as his lungs. 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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Posted: 12/29/2022 1:13:16 PM EDT
[#49]
Quote HistoryOriginally 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. See if you can get an ASV machine. I could never go back to a regular CPAP. |
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Posted: 12/29/2022 2:04:06 PM EDT
[#50]
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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