Need advice/help

Hello, i am new to the community of sleep apnea. I was recently diagnosed for sleep apnea by a home sleep study. I don't have insurance and did a home study due to costs. That said, i realize a home study isn't as good as a clinic sleep study. However that said i am somewhat skeptical on this diagnosis. Let me give a rundown and try to keep it simple and asks for advice/opinions.

pre-diagnosis story- skip the paragraph if it's TLDR.
(2 weeks before hospital visit i stopped all caffeine intake and changed to a lighter diet)Back in November of 2016 i went to the ER because i kept having heart palpitations and anxiety like pressure in my chest right after the palps. I had a echo, nuclear stress test, and stayed for almost 2 days on EKG etc at hospital. They told me i was having anxiety attacks as everything tested came back clear. I literally thought i was having a heart attack when the palps hit me. Fast forward a bit and i eventually went to a cardiologists as my symptoms never went away and seem to come and go on vicious cycles. The biggest issue i had during this was when i started having these "attacks" (heart palp, chest feelling strange,and rapid heartbeat after for a minute or so) is eventually i would get better over a period of a few days and progress to close to normal. Even in my best of times in between these attacks i still could feel random heat palps that were quick and painless but disturbing. They would occur almost always when i was calm or even idle. They also seemed to happen sometimes when breathing out/in and even moving legs/arms i may feel one very briefly. The attacks though were the worst because they induced a feeling of doom/anxiety in my chest sometimes butterflies and then my heart rate would shoot up. Then i couldn't get to sleep because it would trigger palpitations/attacks and i would wake up before falling into sleep cycle. So i stopped doing any strenuous activity as it seemed to promote these issues upon calming down/rest. My cardiologists worked with me since i am self pay and i did a 24hr heart monitor and he said it was good. However when i get to finally see him i am usually doing better due to scheduling and his work patient load. Anyways he suggested i see a sleep study and see if my issues were sleep apnea related. So i did a home study because it was affordable, and they gave me a quick run down and said i had "mild" sleep apnea. fast forward more and now i have a APAP machine. So below is where i need help/advice.


I now have an APAP machine and full face mask, i chose the mask because it was easier for me at the time of testing to breathe into.(my nose seems narrow when breathing and so nose only masks were not a go for me) So i decided to follow advice of testing the machine while relaxing and watching TV to get used to it. I had the mask on for about 30 minutes, and low and behold i had a palpitation attack right there while using the machine. I was totally calm and even thinking hey this isn't so bad then BOOM. During this test of 30 minutes i had a CM50d oximeter i just had bought the day before. I literally looked down and read the stats on it when my attack hit right after. I was at 98% oxygen and 43BPM then within 5 seconds i was at 140bpm/100% oxygen. I had to take off the mask and perform slow calming breaths to calm my heart rate down. I cannot understand why this happened as i was calm watching tv. So this prompted me to do some testing with my CM50d oximeter by recording myself at night without the apap.

My cm50d oximeter shows my oxy level never drops below 93% in a 2 hr sleep test i did the night after i tried the apap and palp attack. However my heart rate seems to be highly variable in this test never went over 100bpm but would jump from low 40's to 80/90s in very quick intervals. So i am starting to wonder why my oximeter is showing almost all cardiac events in summary but next to none in oxygen levels. Is this sleep apnea or am i having a cardiac issue? I realize people aren't doctors here but i am hoping i am not alone on this type of issue.


Summary of my wall of text(i apologize its longer than i wanted.)

Started having heart palpitations/panic/anxiety/chest pressure/accelerated heart rates attacks
Went to ER and had echo/nuclear stress/many EKG's etc. All cleared
Kept having palp/attacks finally went to cardiologists, who did a 24hr heart monitor and said i was okay, to try a sleep study maybe.
Sleep study at home, diagnosed with mild sleep apnea. given machine and sent home.
Tested on machine and had an attack after 30 minutes of using machine while awake in sitting position.
Started testing myself for oxygen sat levels and heart rate with CM50d oximeter to see what might be happening
Results from my own few tests show min 93% oxygen levels and tons of cardiac events of heart rate change during sleep. (low 40's to just below 100 bpms in very short intervals while asleep)

Explanation of attack: when laying down i get a bizarre feeling of quivering/doom in my chest which turns into what feels like pressure and travels up to my head. I then have to sit up to stop the feeling in my chest and then i get intensely warm/hot and my feet/hands immediately start sweating. All while my heart rate jumps from around 40bpm to 100+bpm. At night during the worst of these i cannot sleep properly as i keep waking up to attack happening and if and when i do fall asleep i wake up later with a sweaty shirt around my neck/chest.

I am going back to my cardiologists on the 30th, but until then i am going to try and record as much i can with my cm50d to show him these results. When i did his heart monitor test it was a day i felt fine. What i am really concerned with is my heart rate, both has always been low that i know of (bradycardia when idle/sleep) and now the jumps to high levels in such short time. I feel like i may have something like Afib as many of the symptoms are there but i am not a doctor of course and researching online can scare anyone into thinking the end of the world

(I have made an account but waiting for it to be activated posting as a guest for now)

Personally, I think your situation is too complex for anyone to give accurate advise on this message board. We are not medical people and I think it would be dangerous to take medical advise here. Best wishes.

Papertrayguest wrote:I feel like i may have something like Afib as many of the symptoms are there but i am not a doctor of course and researching online can scare anyone into thinking the end of the world

Welcome to the forum, Papertray. Thing is, we aren't doctors either. That said, I would bet a nickel that what you are experiencing all adds up to stress/anxiety. I also think that if you have Afib, your doctors would have mentioned it to you, or at least suggested it as a possibility. You mentioned you had a doctor appointment on the 30th. Please come back and let us know how you are doing.

PS Stop researching... (do as I say, not as I do).

And you stop practicing medicine without a degree!

to have a summary of 40 to 100 really doesn't mean much as there are glitches that spike the readings. these glitches normally show up as a single line
It's normal to have a swing during the night and different stages of sleep. You have already had a 24hr cardio and it was fine.

a +/- 4% swing in o2 is very normal and levels below 90% are generally acted on.

Thank you folks for the replies. I guess in hindsight my post is missing a lot of data and more the ramblings of a mental patient

I guess what i really meant to ask was:
1. is it normal or are there people who have experienced heart palpitations before being diagnosed with sleep apnea and then having it resolved with use of the device.(just curious to hear others experiences)
2. With my SPO2 level staying at 93% or above during sleep but variable heart rates seem normal(maybe someone else has had these results as well)? (i thought sleep apnea involved o2 sat levels dropping under 90% roughly)

As for my medical history there isn't much to go on. I rarely ever went to doctor and probably haven't been before this problem for roughly 15 years or more. I am a 37yr old male, 6"4 255lbs with no medical history. My blood pressure is normal, and even to this date only been diagnosed with sleep apnea. I have been somewhat concerned with my heart rate being low but really only with palpitations and what appear as anxiety attacks. I take no medication aside from occasional nexium or zantac for heartburn. My blood tests showed my cholesterol was slightly elevated i think 230ish. I do not smoke,drink, or do any drugs. I did however use tons of caffeine for as long as i can remember. I used to drink an energy drink almost every weekday morning for at least maybe 10 yrs? Also, the energy drink i drank did have a ton of B3,B12,B6 in it. The palpitations started before i totally quit caffeine but the anxiety like attacks started after that. I have quit almost all exercise outside of my job since this started happening because it seem to exacerbate the palps and attacks when i am relaxed/idle.

Lots of good advice on here about stop reading online and practicing medicine without a license I totally understand this and i do not doubt anxiety has a strong factor in my issues. However its the chicken or the egg argument for me. I have these palp attacks at random mostly when i am calm and never when i am active. So what i cannot figure out is if the anxiety causes the palps or the palps cause the anxiety. I refuse for now to take any medicine for anxiety mostly due to side effects. Also if the APAP machine does its job then i am hoping that's all i need for now.

You can have sleep apnea without your O2 dropping significantly. The lowest mine went down to on two full-scale sleep tests was 90% and that was only for a few seconds.

papertrayguest wrote:Thank you folks for the replies. I guess in hindsight my post is missing a lot of data and more the ramblings of a mental patient

I guess what i really meant to ask was:
1. is it normal or are there people who have experienced heart palpitations before being diagnosed with sleep apnea and then having it resolved with use of the device.(just curious to hear others experiences)

There are anecdotal reports here of people who say they have less problems with heart palpitations after getting their OSA under control. But, quite frankly, that's one of the "your mileage may vary" things about OSA and CPAP therapy. As troubling as you find the heart palpitations, you should be talking to a cardiologist about them. But given the fact that you are uninsured, that complicates things. Still, we're not medical people here, and heart palpitations are a significant medical symptom that needs to be reported to a real doctor, not just patients on a patient support forum.

2. With my SPO2 level staying at 93% or above during sleep but variable heart rates seem normal(maybe someone else has had these results as well)? (i thought sleep apnea involved o2 sat levels dropping under 90% roughly)

You don't need to have O2 desats in order to be diagnosed with OSA. And you certainly don't need to have any desats that are less than 90%.

OSA is diagnosed based on the number of apneas (total cessation of breathing for >= 10 seconds) and hypopneas (definition to follow) that occur on average during each hour of sleep. If you have an average of 5 or more apneas+hypopneas per hour, that's enough to earn you a diagnosis of mild sleep apnea. If you have an average of 15-29 apneas+hypopneas per hour, you have moderate sleep apnea. If you have 30 or more per hour, then you have severe sleep apnea.

On a sleep test, a total cessation of breathing that lasts for at least 10 seconds will be scored as an apnea. If there is evidence that you are trying to breathe, the apnea will be labeled an obstructive apnea (OA). If there is evidence that you are NOT trying to breathe, the apnea will be labeled a central apnea (CA).

There are two distinctly different definitions of hypopnea that are currently used by sleep labs in determining whether or not a patient has sleep apnea. For most patients, it doesn't seem to matter a great deal which definition is used, but for a small number of patients (including me), the definition of hypopnea can make a big difference in whether one winds up with a sleep apnea diagnosis.

The older, so-called "preferred" standard for scoring a hypopnea requires two things: (1) A drop of 30% or more in the amount of airflow into/out of the lungs that lasts for at least 10 seconds and (2) an associated O2 desat of 4% or more. Note that if the baseline O2 saturation is 97%, a desat to 93% that is associated with a 30% drop in airflow is enough to score a hypopnea.

The newer, so-called "alternative" standard for scoring a hypopnea requires EITHER of the two combinations of things:

• (1) A drop of 50% or more in the amount of airflow into/out of the lungs that lasts for at least 10 seconds and (2) an associated EEG arousal. (No O2 desat is needed to score this kind of "hypopnea with arousal)
• (1) A drop of 50% or more in the amount of airflow into/out of the lungs that lasts for at least 10 seconds and (2) an associated O2 desat of 3% or more.

The "alternative" standard is the one that the AASM would prefer to use since sleep doctors have increasingly come to the conclusion that some people with sleep disordered breathing have a strong tendency to arouse themselves before an O2 desat can occur. And they've realized that the arousals suffered by people with UARS and/or OSA can be just as devastating to the quality of sleep and to the body's health as the O2 desats that are usually associated with obstructive sleep apnea.

The "preferred" standard is still around because Medicare/Medicaid still insist on using that definition for hypopnea to determine whether they will pay for a patient's CPAP equipment. Some insurance companies insist on following Medicare/Medicaid rules; others are willing to accept OSA diagnoses made using the "alternative" standard.

Sleep labs are supposed to make it clear which standard is being used when they score a sleep test. For home sleep tests, the only way "alternative" hypopneas can be scored is if the home sleep test kit contains some kind of (EEG) sensors for determining sleep state since the hypopnea related arousals are brief--as in they last no more than a few seconds.

Scientific studies have shown that for most OSA sufferers, most of their hypopneas would be scored under either the "preferred" or the "alternative" standards. But as I said before, a few people can have the results of their diagnostic sleep test skewed significantly by which standard is used to score the hypopneas.

In my case: I had no official O2 desats on my diagnostic sleep test that were associated with specific sleep disordered breathing events. Under the "preferred" standard for scoring hypopneas my calculated AHI was 3.5, not high enough to be diagnosed with OSA. But under the "alternative" standard for scoring hypopneas, my calculated AHI was 23.1, well into the range for moderate sleep apnea.

How did this happen? In my diagnostic sleep test, I got 238.5 minutes of sleep. During those 238.5 minutes of sleep, I had a total of 14 OAs (none of which caused a desat, but got counted because NO air was moving in/out of my lungs for at least 10 seconds AND I was still trying to breathe). During the 238.5 minutes of sleep I also had a total of 78 "hypopneas with arousal"---i.e. hypopneas where the airflow decreased by at least 50% for 10 seconds or more and which triggered an EEG arousal, but did NOT trigger an O2 desat of 4%. None of my hypopneas could be scored under the "preferred" standard, but all of them could (and were) scored under the "alternative" standard.

You also write:

As for my medical history there isn't much to go on. I rarely ever went to doctor and probably haven't been before this problem for roughly 15 years or more. I am a 37yr old male, 6"4 255lbs with no medical history. My blood pressure is normal, and even to this date only been diagnosed with sleep apnea.

Do you have the full summary data from your sleep test? Do you know how many events were scored and what kinds of events were scored? Knowing that information might help us better determine what the chances are that you were diagnosed correctly with OSA.

49er wrote:You can have sleep apnea without your O2 dropping significantly. The lowest mine went down to on two full-scale sleep tests was 90% and that was only for a few seconds.

This is like most diseases. You can have the disease and not show every symptom or marker associated with that disease.

As already stated, this case is complicated, and most of us are not doctors. Even those of us who are do not have the access to your records and lab tests your own doctor has.

It sounds to me like you might need a higher pressure setting, but I do not really have all the information.

Again awesome to see interaction with other sleep apnea folks. You guys are explaining it very well for me as a newbie to sleep apnea. To be clear as i probably wasn't in my previous post. I have been caffeine free since Nov of 2016. I also avoid anything that stimulates such as ginseng and the like. Its been rough in that regard, as i find myself tired easier. My major palpitation attacks with increase heart rate right after started not long after i quit caffeine. Given the fact there are many factors and variables such as i changed my diet also. I don't draw any conclusions there as it being a source. I just am trying to understand sleep apnea better as i feel my sleep doctor didn't explain it well to me.

The arousal event as mentioned by users here must be what they went by. I know on my (sleep doctor)home test my o2sat never went below 94%. I forgot the numbers they mentioned but there was a certain amount of arousal per hour. they said it was mild sleep apnea. Anyways i don't expect doctor diagnosis on a forum. I am really just trying to make sense of my issues and diagnosis. I know some doctors are quick to put people on medicine and the like. So i was just wondering if because i am uninsured if i was being quickly thrown into a group of diagnosis. I don't really feel this is the case for me, as i have had sleep issues a long time but never even considered it sleep apnea as i thought that was an overweight issue only. I feel the need to question diagnosis because it educates myself and just to try to be sure i am going down the right road.

On a side note: I was wondering on my Apap machine i have the full mask and find it hard to breathe out on exhale. I thought i saw somewhere here that there are adjustments to help with this. Should i ask my machine provider about this?

papertrayguest wrote:Again awesome to see interaction with other sleep apnea folks. You guys are explaining it very well for me as a newbie to sleep apnea. To be clear as i probably wasn't in my previous post. I have been caffeine free since Nov of 2016. I also avoid anything that stimulates such as ginseng and the like. Its been rough in that regard, as i find myself tired easier. My major palpitation attacks with increase heart rate right after started not long after i quit caffeine. Given the fact there are many factors and variables such as i changed my diet also. I don't draw any conclusions there as it being a source. I just am trying to understand sleep apnea better as i feel my sleep doctor didn't explain it well to me.

The arousal event as mentioned by users here must be what they went by. I know on my (sleep doctor)home test my o2sat never went below 94%. I forgot the numbers they mentioned but there was a certain amount of arousal per hour. they said it was mild sleep apnea. Anyways i don't expect doctor diagnosis on a forum. I am really just trying to make sense of my issues and diagnosis. I know some doctors are quick to put people on medicine and the like. So i was just wondering if because i am uninsured if i was being quickly thrown into a group of diagnosis. I don't really feel this is the case for me, as i have had sleep issues a long time but never even considered it sleep apnea as i thought that was an overweight issue only. I feel the need to question diagnosis because it educates myself and just to try to be sure i am going down the right road.

On a side note: I was wondering on my Apap machine i have the full mask and find it hard to breathe out on exhale. I thought i saw somewhere here that there are adjustments to help with this. Should i ask my machine provider about this?

It would help to know what machine you are using...most have exhale relief settings.

The machine is a Resmed Airsense10 - my pressure settings are 5-15 so i am told but it starts out at 4 initially. Again super thanks to all who have responded. (cant seem to quote people for some reason. maybe when my account is activated i can)

papertrayguest wrote:The machine is a Resmed Airsense10 - my pressure settings are 5-15 so i am told but it starts out at 4 initially. Again super thanks to all who have responded. (cant seem to quote people for some reason. maybe when my account is activated i can)

On the Resmed AirSense 10, there is a feature called EPR. EPR is a form of exhalation relief. In general EPR reduces the pressure by a fixed amount at the beginning of every exhalation, but it will never reduce the pressure below 4cm. That's to insure that there is enough air blowing through the mask and out the exhalation holes to make sure that the CO2 you exhale is vented out of the mask instead of allowing you to rebreathe it.

So it's worth making sure that EPR is turned on. But keep in mind that at the beginning of your ramp, when the pressure is set to 4cm, EPR is not going to do anything. However, as the pressure ramps up, EPR should make it easier for you to exhale.

Wanted to come in and update this. I have been on my apap machine for roughly 2-3 months now. I have improved greatly but not fully. I have reduced the palp issue to almost non existent at least during day.

I have worked on keeping my stress to a minimum and changed my diet a bit. I am used to the machine and it has become a kind of crutch to me. I have noticed if i try to sleep without it even long naps i can feel the difference. Without the apap i get extremely lethargic dead tired when sleeping. With the machine i feel moderately sleepy and don't feel dead tired.

I still have one issue left affecting me and its when sleeping mostly. I get some good nights and bad nights on duration between waking up. On bad nights i wake up almost hourly or every two hours. Usually when this happens i have nightmares or dreams of something happening to me like i am straining. This causes me to wake up eventually and it makes it hard for me to go back to sleep. I suspect i may still have an issue outside sleep apnea causing this. Right now i am focusing on using the machine religiously so overtime i can see if i continue to improve.

I still struggle also with full mask staying sealed when i sleep. I cannot keep my mouth closed and i don't use a chin strap because with full mask its too much stuff to wear comfortably. I usually tend to find a position of my head and hands/pillow to help keep my jaw closed or at least restricted some. I also tend to lean my face into a pillow to give extra support push against mask to keep from seal breaking in the night.

I also found i cannot eat anything 2 hours before bedtime. It can cause me to want to burp and with mask pressure i actually end up swallowing air instead of burping. This can repeat over and over and i end up with lots of air in my stomach over time. I also found this happens if i lay flat in bed more often than not. My solution so far is to sleep on the couch inclined on pillows and stuff. This may also be contributing to me waking up more than i should due to comfort. Sometimes my hip will hurt if my incline is too steep.

I also find i only sleep on my left side and or in a sitting up position. I will return to sleeping in my bed soon and try right side sleeping. Right now i am keeping my variables consistent to track my progress. If i do make a change i do only one change at a time to help determine if its causing issues or not.

Overall i am heavily inclined to use my apap and have really made good strides to getting better. I no longer worry about my daytime activity causing palps. I generally don't get sleepy during the day like i used too. The level of tiredness i do get is on a different level than before. Now i actually do not like the extreme fatigue/tiredness i can get without my apap. I can tell the difference there and i didn't know this before until using the machine has shown me a difference.

Sorry for writing a book. TLDR: apap has helped me dramatically but i am not fully back to normal yet. It has given me hope that i will be able to recover fully though.