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singingkeys

singingkeys
Joined Oct 2018
singingkeys
Joined Oct 2018

In 2018, I got a doctor referral for a sleep study, finally in my 30's. Unable to function, brain fog, waking up exhausted every day, etc. Had an in-lab sleep study that showed 4.7 AHI, 18 RDI with 50 events in 2.75 hours for the whole night. Sleep doc said I didn't have sleep apnea. No major drop in O2 levels below the low 90's. Couldn't get a CPAP. My ENT doc requested a CT scan of my sinuses. Deviated septum and enlarged turbinates. Got surgery for both and I breathe easier now, but still sleep poorly. Requested a home sleep study via mail order on my own a few months after surgery. 5.2 AHI. I got my ENT doc to write me a prescription for an Air Sense 10 Autoset and I've been trying to get that to work. I have it to 7.6 starting pressure and max of 10.4 in APAP mode, because it never goes above about 10.1 no matter how high I set the max. Anything below 7cm makes me feel suffocated.

3 ER visits December 2019 - January 2020. Racing heartbeat out of nowhere at night before bed, trembling/shaking all over, feeling like I couldn't breathe, feeling faint, so much adrenaline that I felt like I couldn't walk, etc. A few EKG's, tons of blood work at the hospital each time. Nothing. Blood pressure went up as high was 170/100. I'm a healthy and muscular caucasian male, 5'8 and 150 pounds. Never been overweight. No large neck. Nothing outward screams sleep apnea.

February 2020 - my family got a violent stomach bug. 3 members of the household. One had violent vomiting for a couple of days along with diarrhea. The two of us just got black diarrhea. I had it for days. After that, my stomach was killing me for weeks with burning and pain all night. Finally had an Upper Endoscopy (EGD) at the Gastroenterologist. He saw a red and inflamed stomach lining. They did biopsies and found no bacteria (like H. Pyloria) and no cancer. He put my on a PPI med for months and I eventually ended up on Nexium 40mg twice a day, which I've taken for like 5 months now.

I've been to two primary care doctors, a Cardiologist for a full Stress Echocardiogram with ultrasound of the heart before and after the treadmill walk. He said my heart is healthy. Wore a Holter monitor 24/7 for 31 days. They caught half of a second of arrythmia and it wasn't even during a time when I reported symptoms. He said he thinks it is my sleep issues. I have Dysautonomia that started 2-3 months ago. Dizziness in my head, tingling on the top and back of my head, my heart rate increases and decreases suddenly, I feel faint-like sometimes. Suspected Postural Orthostatic Tachycardia Syndrome or Dysautonomia. My new primary care doc put me on Fludrocortisone, a steroid, to try to help with the Dysautonomia. Hasn't helped much, if at all. I've been to an Endocrinologist to make sure it wasn't thyroid related, had all kinds of blood work done again, etc. Nothing.

Earlier in 2020, I found a new sleep doctor and got an exam. He went up my sinuses with the endoscope and said they're clear, but turbinates are again enlarged. Covid-19 was happening, so he sent me home with a sleep test. 13 apneas/hour. He said he didn't believe that and when he looked at my throat, he said I don't look like someone with Upper Airway Resistance Syndrome, either. Did an in-lab sleep study at his lab because he wanted to know that they're counting apneas correctly as 10 seconds or more. I had 64 apneas/hour and slept for half of the night. Went back for a titration sleep study last week. I brought my P10 nasal pillow mask and she said it did well. My sleep tech was actually the sleep lab manager and previously owned her own sleep lab. They use the OmniLab titration system. During the earlier part of the study, I felt like I was floating up to the ceiling and then it went away. I don't get that at home when I use CPAP. Not sure why I got it in the lab.

Outside while waiting on my ride the next morning, off the record she told me that she started me off on CPAP at 6cm. She kept upping it and later told me that it wasn't working for me, so she switched it to BiPap and it started working. She said she saw some central apneas, as well. I also get autonomic dysfunction with the dizziness, muscle weakness, feeling faint, etc. General Dysautonomia. I also tend to have throat tightness all day long on both sides of my throat and it feels like I can't breathe or like there is a lump or swelling or something. It has been like that for days and days, so I doubt it is anaphylactic. shock or anything. I have no known allergies to food, etc. I'm waiting on my next virtual sleep doc appointment next week to get results and see what is next as far as treatment. Don't have the results back yet from the in-lab titration study that found the centrals, but she said I "slept well" once on the BiPap, even though I felt like garbage that whole day. She also commented that the monitoring system in CPAP/BiPap machines is junk and PSG is about the only true way to tell if it is working.

I've been using CPAP on my own for about 6-8 months now. At this point, I don't know if I have Upper Airway Resistance Syndrome, Obstructive Sleep Apnea, Central Sleep Apnea or a mix of OSA/CSA and/or UARS. Some days I get just a few obstructive apneas showing up in OSCAR and maybe a few hypopneas with an AHI of 1.5 for an whole 8 hour night. Other days I might have 7 to 8 AHI, slept horribly, ripped the mask off after an hour or two, etc. I'll see mostly centrals in OSCAR, say 10 or so Centrals within under 2 hours and they're usually mixed with just a few hypopneas or obstructive apneas. Then I'll have other days with no Centrals and not many apneas/hypopneas under the exact same settings for no rhyme or reason. Lately, lots of Centrals has become the common theme.

How should this be approached from a diagnosis point of view? Try BiPap first to see if it works and then seek ASV? Curious why CPAP didn't work in the lab and BiPap did. She said she started at 6cm on CPAP and I guess kept upping it. Maybe it caused me to have a lot of centrals and get reduced oxygen for a short while? I had a floating up to the ceiling feeling I think while I was on CPAP in the lab and it went away when she went to BiPap after the saw the CPAP wasn't working. I don't get that floating feeling at home on CPAP, so that's odd.

Curiously, I have times when I wake up ahead of my heartbeat increasing. So my brain wakes up first, then my body about 10-15 seconds later and it feels scary as my heart "starts up" from a slow heartbeat to a more rapid heartbeat. As best as I understand it, most people with OSA wake up WITH a pounding heart, not with it starting after waking up. My brain wakes up first, then if I just lay there for 10-15 seconds or if I physically move my arm or something, my heartbeat will increase. I fall asleep on buses on the way home from work (30 minute ride tops), fall asleep in my chair in front of the computer, fall asleep in the passenger side of a car on a 20 minute trip across town to a store, etc. Sleepy all day. Sleep is not restful.

When I use the CPAP, I feel like I'm fighting myself breathing. When I don't use it, I'm obviously having lots of apneas on my back (like the 64 apneas/hour in lab), but but they claimed none on my side. I think the ones on my side may be Centrals. I have days when I feel irritated, hot all over, feel like the blood pressure is high in my face and hands, etc. I'm dizzy, my digestive system and bowels are all messed up (soft stools that come quickly with short notice and smell terribly).

As noted, next week is my doctor's appointment. I have a team of doctor's, so I'm not asking you to treat me. I'm asking for opinions, tips, anything helpful along this journey. Thoughts? :huh: I feel so bad that I can't even drive at all. My body doesn't want to work right sometimes. My muscles feel jumpy/jittery some days. I have trouble swallowing food and drinking liquids sometimes and not at other times. I get the pressure on both sides of my neck in the area where you check the pulse rate. When I check my blood pressure with an electronic monitor, the "irregular heartbeat" icon lights up even when the blood pressure and pulse rate are normal. As noted before, the Cardiologist found nothing in the Stress EKG or during the entire month of wearing a Holter monitor with 5 electrodes stuck to me 24/7 and looking for anything odd. My stomach/intestines "twitch" and feel like they are contracting a lot or something. There are times like right now when my heart is beating normally speed-wise, but I can see my entire stomach jumping lightly with each beat.

I'm attaching a couple of screenshots of OSCAR data from June 6 and June 10 to show the differences in what I'm dealing with. I had to do regular screenshot grabs because the F12 button in the program is capturing just a blank image. One day seems fine and the next I'm ripping my mask off after an hour or two and then putting it back on later and having a crazy amount of central apneas. Why would I have so many on one day and sleep terribly and then sleep 8+ hours on another day and not have as many?

Does this pretty much guarantee that I have both Central and Obstructive Sleep Apnea? What can I do to stop pulling off my P10 mask?

June 6 - https://i.ibb.co/PGw9swh/6-6-2020.jpg

June 10 - https://i.ibb.co/PhLM9st/6-10-2020.jpg

Does anyone with sleep apnea have a heartbeat that increases AFTER they take up?

I'm not talking about waking up WITH a racing heart. My brain wakes up first, then a few seconds later I can feel my heart kickstart physically as my body starts waking up after the fact. THEN my heart starts beating faster and I witness that increased beating. Not just while asleep in the bed, it can happen in my computer if I doze off upright or whatever. I pop awake, my heart starts beating faster and my body is asleep for a few seconds after my brain wakes up first. My sleep doc has no idea what I'm talking about. Other people with sleep apnea seem to not know what I'm talking about.

I've been checked by GP doctor and had tons of blood work. All normal. Cardiologist did a full Stress Echocardiogram. Everything was good. I requested a 31 holter monitor and just got done with that. Nothing wrong found. I've been to an Endocrinologist for an exam and blood work shows nothing is wrong. Not overweight, 5'8 and 150 pounds. Very muscular for my size. Active job lifting heavy stuff all day. All of my jobs have kept me active, always. 64 apneas/hour over my last in-lab sleep study. On my side, I was told that I have nothing, but I had bad wakeup events on my side during the study, so I'm puzzled. They didn't see it, but I felt it and it woke me up.

My brain wakes up during the night while my body is still asleep. Shortly after, my body wakes up and I can feel my heart start beating faster since my brain is already awake. This is an odd phenomenon and I can't find anyone with it. Sleep doc doesn't know. Cardiologist thinks it is sleep apnea causing all of my symptoms. I've been pretty dizzy and had POTS and/or Dysautonomia for a couple of months now. Primary care doc put me on Fludrocortisone for Dysautonomia (malfunction of the Autonomic Nervous System). It gets better or worse depending on how well I sleep x days in a row. I have events on my stomach, sides and back. Then my nose stops up at night when I lie down. I've had turbinate reduction and septoplasty in 2018. My ENT doc/sleep doc says the turbinates are swollen. When I exhale through my nose, sometimes I hear "popping" from in the sinuses of one side of my nose. Endoscope showed clear sinuses. I also may have a bit of a soft palate extra lip as I've had this thing since I was a kid where if I breathed out of my nose quickly, my throat would sort of choke itself a little bit as if the soft palate had a part that extended over and choked me.

I feel so tired some days that it feels like my weak and shaky legs are going to collapse me down into the floor.

I've posted on here quite a few times in the past trying to figure out what was going on with my sleep. I'm 37 years old. 5'8, 150 pounds. Fit and muscular. I have been for all of my life. No other known health issues. For a lot of my life, I've been really tired and couldn't figure out why. In 2018 I had an in-lab study that showed 4.7 AHI and 18 RDI with 50 breathing events over 2.75 hours. I had turbinate reduction and deviated septum corrected. Breathed better upright during the day, but still had sleep issues. After that, I had a home sleep study. 5.2 AHI. In late 2019, I convinced another ENT doctor before this one to write me a CPAP prescription based on my 2018 home sleep study with the 5.2 AHI. I tried to set it myself, but I never could get it to work right and never had a titration study.

I just finished a battery of doctors over the past 5-6 months. 3 ER visits in December-January for panic attack-like symptoms (autonomic nervous system going haywire), Cardiologist (and a holter monitor for a month) for a Stress Echocardiogram with ultrasound, etc. No heart issues. Nothing found on the holter monitor for 31 days, even when I reported events. GP doctor, blood work a number of times, nothing found. Gastroenterologist for an Upper Endoscopy of the stomach (in February I had severe stomach pain about a week after the household came down with a stomach virus). The biopsy showed no cancer or bacteria, just a swollen stomach lining (Gastritis). Endocrinologist did blood work and all was normal.

About a month ago, my new ENT/sleep doc gave me a type 2 home sleep study. 13 apneas/hour. He didn't believe it because I don't show any of the typical characteristics of someone with sleep apnea or UARS. Neck is average size, not overweight, I look 20 every though I'm 37, fit and healthy, etc. He even went up my nose with a tube endoscope and said my sinuses looked clear (at least while upright) and said I didn't have characteristics of someone with Upper Airway Resistance Syndrome.

Well, I had my in-lab study a couple of weeks ago. I had my virtual appointment this morning to review the results. He said I have positional sleep apnea and barely had anything on my side, but 64 apneas/hour on my back. 33 RDI which included apneas, hypopneas and RERAs. Lowest 02 was 91% and I slept for half of the night, which he said is pretty typical for everyone. 1 central apnea and 98 hypopneas noted.

As of the past month or two, I've noticed that I get really dizzy and feel kind of top-heavy on my head (feels like I'll tip over) when I don't sleep well enough for days in a row and it goes away when I get more sleep. It also improves when I'm more active and physically doing heavier stuff like lifting stuff or doing something cardio-related, so it may be a little bit of POTS-related stuff or Dysautonomia due to the malfunctioning autonomic nervous system. I now know to try to sleep on my stomach or side since it seems to be position per the doc. He wanted me to try the "tennis balls on clothing on the back" thing...I'm not interested in it. I still have my ResMed Air Sense 10 Autoset. I've got 3 masks from my previous tries. Going to have my titration study soon and see how it goes. I think I have the P30i full face mask, nasal pillow mask and the P10 nasal pillow mask.

If after a number of months the CPAP doesn't go well (or if I simply hate being on CPAP and don't want to be on it for life), I'll opt for surgery to try to correct it. I'm definitely his odd patient given the circumstances and that nothing about me screams sleep apnea. He wanted me to try a dental device first, but I don't want teeth moving around and I've had a lot of dental work and such. Plus he said it could eventually cause jaw problems and I get a little TMJ sometimes already, but minor. Now I know why I wake up in the morning feeling like a truck ran over me. I'm literally waking up every minute on my back. No wonder my anxiety is through the roof with no previous history of it. No wonder I can't concentrate to drive and fall asleep 10 minutes after getting on a bus or riding in the car with someone. Looking forward to feeling better. I know that I'm a mouth breather sometimes (air puffing out of lips like blowing a kazoo), but the full face mask that I've tried so far (the P30i) was awful and made me feel claustrophobic and I normally don't feel that way for anything. The nasal masks are okay and I just switched back to the P10 a while back because it allowed for more air flow. I just hate the hose on the front of the P10 instead of on top of the head like the P30i. I liked the P30i nasal pillow mask the best, but the sides are so flimsy that it cuts off the air flow.

Here's to the future of feeling better!

I've been everywhere...2 primary care docs, 3 ER visits for panic attack-like symptoms, two ENT docs, tried CPAP (didn't work for me or was wrong settings), Gastroenterologist and had an Upper Endoscopy of the stomach (developed Gastritis a few months ago after a stomach bug made the rounds around the household), thyroid doc (it was fine), etc. Been to a Cardiologist...full Stress Echocardiogram. He said my heart was fine and that I'm completely healthy, but his notes on their internet portal said I had an odd looking r-wave, palpitations, etc. Yet he reiterated that nothing was wrong and I have a healthy and strong heart. I had ultrasound walking on the treadmill and resting.

Just had a home sleep study done yesterday morning since the lab isn't open. Had a televisit this morning for results. 13 events/hour, so mild sleep apnea. Very well-known ENT and sleep doc. He said he's never heard of anyone having the kind of dizziness/vertigo that I have, from sleep apnea. He wants to do a hearing test and balance test, which may take 2-4 weeks. I'm dizzy every single day and feel faint-like when I walk, as if the floor is coming towards me or something. Anyone else had this happen? I've become exercise intolerant, yet I'm very muscular and in shape. 37 year old male, never overweight and always in good shape and active.

I requested a holter monitor for the heart (5 electrodes) and they wanted me to wear it for 30 days. I'm on day 5. I've triggered it whenever I felt odd events, noted dizziness and such on the screen. I can't figure out why I'm so dizzy. Current sleep doc doesn't recognize the former sleep lab (only 2.75 hours) study of 4.7 AHI with 18 RDI. He doesn't think I need my CPAP/APAP (Air Sense 10 Autoset). It wasn't working for me and I tried various settings for months on my own. He said he has never heard of dizziness being caused by mild sleep apnea, but yet when I look online, dizziness IS a symptom of sleep apnea/sleep deprivation. Very well-known doctor in a large city, won all kinds of awards, has written books on sleep issues, etc. He even recognizes UARS, but says I don't look like a candidate for it. He thinks the in-lab study was wrong. My dizziness just started like 4 months ago, got better and then came back again. He wants to do a hearing test and balance test, but eventually when the lab opens, a sleep study.

I'm under the care of a Gastroenterologist, a primary care doctor and a sleep doctor. But right now we're pulling straws to find answers. Fairly healthy 37 year old Caucasian male, 5'8, 150 pounds. Muscular and very active with active jobs for all of my life. Never overweight. No known major health issues.

In December - January, I went to the ER 3 different times for having a racing heartbeat out of nowhere, increase in blood pressure, pressure feeling/redness in face, full-body adrenaline bursts, etc. ER did all kinds of blood work, EKGs, etc. Nothing found. Sent me home after my blood pressure (which reached as high as 173/100 at one point) went down 4-6 hours later. On the third ER visit, my family had just gotten over a bad stomach virus that gave me black diarrhea for 3-4 days. My stomach was burning in the solar plexus area. ER referred me to go to a Gastroenterologist, but did a CT scan with contrast at the hospital. Nothing found. All organs looked normal. Cardiologist said my heart was fine after checking everything with a Stress Echo, ultrasound, color flow, etc.

I went to the Gastro doc. He did an EGD (Upper Endoscopy) and found nothing but a red and inflamed stomach for seemingly no reason. They did a biopsy of the stomach and it came back negative for cancer and H. Pylori. I've had that pain for a few months now and Gastro doc says it may take months. I'm on Nexium 40mg twice daily. I've been watching what I eat and avoiding the foods known to irritate the stomach. He said a lot of their patients have sleep apnea.

I've been to a sleep doctor in 2018. I had a 4.7 AHI and an 18 RDI on my 2018 in-lab sleep study. No major oxygen level drops were noted and I stayed in the lower 90's. I found a very good, well-known sleep doctor local to me. He looked at my anatomy and doesn't believe I have Upper Airway Resistance Syndrome (even with that 18 RDI, which he said may not be accurate because of how lazy many sleep labs are nowadays in their scoring). He said my anatomy doesn't reflect that of someone with UARS. He checked my throat, tongue, went all the way up my nose with a camera endoscope and said my sinuses are clear. I had deviated septum/turbinate reduction in 2018. A home sleep in 2019 study showed a 5.2 AHI. The new sleep doctor is going to have me do a third Type 3 home sleep study (in-lab studies are currently closed for Coronavirus) because he said a Type 2 doesn't give him enough results. I'm confused because I thought type 2 was actually the better one that records way more stuff. He also said that the CPAP that I've been trying to self-treat with, as far as he is concerned based on my sleep study results, isn't necessary for me to be using. He said the large apneas on my home sleep study results could have been the cannula moving out of place for a minute or two or an artifact.

For the past 2+ weeks, I've been quite dizzy 24/7. The room isn't spinning, it is more so that I feel dizzy-headed like I'm going to faint when I move my head around or when I exert myself too much. It comes and goes. When I first get up in the morning, it isn't there. Also, when I first get up in the morning, my burning legs don't feel that way. When sleeping and lying down, my blood pressure and heart rate seem lower. When I'm upright, they seem to go up. I know that POTS can do this, but I'm not sure if that's what I have. There is apparently something else called Dysautonomia that I'm not sure if I have, either. Who diagnoses either of those? Cardiologist? It seems like docs just kind of "oh well" shrugs it off and keeps going, but nobody addresses my dizziness or weird feeling in my legs. My primary care doctor (also new) said that with all of my blood work and such being done, the chances of me having some major illness that hasn't been uncovered yet is rather slim. My stomach still has "attacks" where it starts burning for seemingly no reason. I have felt tingling/cold feelings/burning in my legs from the calves down to the feet for about a week now. I feel general malaise and sometimes short bouts of nausea. My Gastro doctor ordered a blood test a week ago and everything came back normal. My T3 Uptake was 22, a few numbers lower than the lowest reference amount. A few of my cholesterol levels are high and my good cholesterol is low. My total Cholesterol is 203, just a little high. HDL Cholesterol is 38 (low). LDL Cholesterol Calc is 140 (High) and T. Chol/HDL Ratio is a little high at 5.3. My A/G levels are high at 2.5, but just a little and they said that most of the results can go up and down based on when you get the blood test. My Glucose showed 100 (High) with a reference of 65-99 given for that. That was after 12 hours of fasting before the blood test.

Sleep doctor wouldn't talk about Gastro issues because that "isn't his field" and the primary care doctor said if he was me, he would try to chase down sleep issues. But the primary care doc doesn't know that much about sleep stuff. I know that I wake up on camera a lot during the night, turn my head to look around as if confused and put my head back down again. I shift a lot at night...just turn over and go back to sleep, basically. So we're not sure if I have: 1) Restless legs causing me to wake up and altering the breathing as my brain wakes up or 2) My brain waking up for some other reason and causing my body to wake up and physically shift around as a response or 3) My breathing slowing/stopping (apnea/hypopnea) and waking up my brain and causing me to shift my body. Meanwhile, my health is taking a toll and I feel AWFUL every day. My stomach hurts, my legs and feet burn/tingle and I'm dizzy and have to work this way. Got any advice? Some days in addition to the dizziness, my hands or feet will turn bright white briefly for a minute or two and they'll feel cold. Doesn't happen that often. I'm super sleepy every day to the point where I can fall asleep on a noisy bus after 10 minutes on the way home during a 30 minute bus ride. I can't drive - not alert enough. I do my job physically at work, but it takes a toll on me. My legs have that burning feeling that comes and goes.

Could all of this really be my sleep? I apparently wake up dozens of times minimum per night. In the in-lab study, in just under 3 hours I had about 50 events of waking up, so I may be waking up a good 100-150 times a night. Are all of my symptoms simple attributable to this?

I can't tell why. I have an extra home security camera with night vision trained on my bed and hooked to the security DVR. I mean spot-on all throughout the night, typically averaging about 33 to 35 minutes apart, I wake up to turn over and go back to sleep. 2018 in-lab study showed 4.7 AHI and 18 RDI (indicative of UARS). Had deviated septum fixed and turbinate reduction. Lots of RERAs - 50 breathing events in 2.75 hours. Severe sleep fragmentation noted.

A home sleep study after that surgery showed a 5.2 AHI overall, but some of the positions had higher AHI like 9 listed in the technical details. Also, an apnea listed as 85 seconds long and yet no oxygen level drops below 92/93. I'm puzzled. It even showed a heart rate down to 42bpm and spikes up to 100+ during the night. Been to heart doc for a full Stress Echocardiogram, had all kinds of blood work, etc. Should I be chasing the UARS? I feel like garbage every morning. This has led to panic attacks due to "fight or flight" mode malfunctioning. Now I have had Gastritis for like 1.5 months. I feel short of breath in spurts throughout the day and I've been extremely dizzy-headed the past 1.5 weeks. When I take a nap, sometimes my legs hurt afterwards with calve cramps. No energy daily no matter how much I sleep. Odd feelings, heart palpitations, blood pressure up, etc. Been dizzy-headed the past 1.5 weeks.

All the UARS or apneas? Off to sleep doc next? Primary care doc?

I also wake up a lot at night being fully awake with my brain, but my physical body is still asleep until I move my head too far, reach my phone or reposition my body. When it wakes up. Otherwise, I could say there for at least 2 minutes feeling my body 'vibrate/jerk' in sleep mode. Is this a sleep disorder of its own? I don't have hallucinations like the part-dream/part-reality people have with sleep paralysis.

Here is a scan of the chart regarding my RERA's. https://i.postimg.cc/FFjsGvhd/RERAs.jpg

An hourly index of 60. That's a disturbing amount. Arousals and awakenings were 166(!). Over 130 of them were in NREM sleep. Something's going on.