Shortness of breath while trying to sleep (sleep apnea)?

[ChookityPop]

I have this right now and have had it quite a few times. It seems to happen If the clock is 4-5 in the Morning and I have yet to fall asleep and therefor very tired.

I fall asleep and wakes up gasping for air. This happens multiple times in a row. Its actually very uncomfortable and a little frightening. Since it feels as If I am choking.

Something that has worked is rinsing my nose with saltwater since my nose often feels Congested when this happens.

Anyone experience this? Could it be dangerous?

Just thought If it actually could be sleep apnea.. I guess I should get that checked out. Im not overweight. I am 180cm and wheigh 70kg.

 

[GlassCannonLife]

Yeah really sounds like sleep apnoea! You can have it due to structural issues that are unrelated to weight. You could have had it or some upper airway resistance syndrome (UARS - I think the two are being potentially combined into one condition though) for years.

Some people find that their ME/CFS was caused by or at least strongly influenced by sleep disordered breathing.

I have had a few issues like that but have been unsuccessful in treating myself with a bipap so far due to my general insomnia issues (can't fall asleep properly with it atm).

I'd definitely recommending getting a sleep study done, or potentially multiple depending on the results.

 

[Judee]

Just thought If it actually could be sleep apnea.. I guess I should Get that checked out.

Yes, please get a sleep study done. Last week in my grief group a lady told the story of her best friend who had sleep apnea deciding to take a nap w/o using her C-Pap machine. Her friend died.

It's serious business so please get in touch with your doctor very soon.

 

[lenora]

Hello@ ChookityPop.....It sounds like a sleep study should be on your list of January resolutions. If it's not sleep apnea, perhaps you'll receive some ideas about what to do. If you do need mechanical means to help, then that will also be discussed.

I understand.....as we all get tired of running around looking for answers. This past summer was the first time in all of my years of illness that I couldn't tolerate sitting for 5 min. in a specialist's office. Why? It just all came to a head and I couldn't bear one more appointment.

I realize that my health is my responsibility; flawed as that may be. So with renewed vigor I'll be seeing doctors that I should have seen for the last 6 mos. of this past year. However, may I note that I did see the important ones, my neurologist who often acts as my GP and my Elder-care Internist. Both fine people who go the extra mile, but I can't rely on their good natures. So we're in the same category....it's time to move ahead and find out the rest of the story. Be well. Yours, Lenora.

 

[ChookityPop]

Yeah really sounds like sleep apnoea! You can have it due to structural issues that are unrelated to weight. You could have had it or some upper airway resistance syndrome (UARS - I think the two are being potentially combined into one condition though) for years.

Some people find that their ME/CFS was caused by or at least strongly influenced by sleep disordered breathing.

I have had a few issues like that but have been unsuccessful in treating myself with a bipap so far due to my general insomnia issues (can't fall asleep properly with it atm).

I'd definitely recommending getting a sleep study done, or potentially multiple depending on the results.

Very interesting. So some people benefit quite a bit from things like CPAP? I need to get my hands on one of those. I think its central sleep apnea. It happens when my brain is super tired and I havent slept.

I will for sure get a sleep study or multiple. I probably need multiple since this doesnt happen that often as Im aware of. Not to the point of waking up gasping for air. I wonder if its possible to fake the test? Like hold my breath multiple times per hour to be sure I get one. I have a feeling that if I do a sleep test a random day it will be normal like it was in 2015 but if I had done one last night it would have shown abnormal results. And Im so used to be rejected by the health care system so I would love to know if faking the test is a real possibility.

 

[GlassCannonLife]

Very interesting. So some people benefit quite a bit from things like CPAP? I need to get my hands on one of those. I think its central sleep apnea. It happens when my brain is super tired and I havent slept.

I will for sure get a sleep study or multiple. I probably need multiple since this doesnt happen that often as Im aware of. Not to the point of waking up gasping for air. I wonder if its possible to fake the test? Like hold my breath multiple times per hour to be sure I get one. I have a feeling that if I do a sleep test a random day it will be normal like it was in 2015 but if I had done one last night it would have shown abnormal results. And Im so used to be rejected by the health care system so I would love to know if faking the test is a real possibility.

I don't think you can fake it, they look at a combination of EEG, breathing, and SpO2 to determine apnoea/hypopnoea. Issues can emerge if you also have a lot of respiratory effort related arousals (RERAs), as there aren't scored appropriately by all places.

This is essentially not a proper obstruction, but a thinning of the airways that leads to a potentially subconscious arousal (ie don't always wake but your sleep gets ruined). That is characteristic of UARS, while hypopnoeas/apnoeas are proper sleep apnoea.

You would be best off finding a clinic that uses a 3 % (vs 4 %) SpO2 drop, as this is believed to be more appropriate for SDB in recent literature, and also a clinic that properly grades RERAs and checks you for UARS.

You can check the r/UARS sub on reddit if you want to find some people that can recommend good clinics in your local area - it is a diverse bunch.

 

[ChookityPop]

I don't think you can fake it, they look at a combination of EEG, breathing, and SpO2 to determine apnoea/hypopnoea. Issues can emerge if you also have a lot of respiratory effort related arousals (RERAs), as there aren't scored appropriately by all places.

This is essentially not a proper obstruction, but a thinning of the airways that leads to a potentially subconscious arousal (ie don't always wake but your sleep gets ruined). That is characteristic of UARS, while hypopnoeas/apnoeas are proper sleep apnoea.

You would be best off finding a clinic that uses a 3 % (vs 4 %) SpO2 drop, as this is believed to be more appropriate for SDB in recent literature, and also a clinic that properly grades RERAs and checks you for UARS.

You can check the r/UARS sub on reddit if you want to find some people that can recommend good clinics in your local area - it is a diverse bunch.

Super interesting! I have copy pasted all of this in my notes app on my phone, thanks!

I wonder if I should go ahead and just buy this one
https://www.noinsurancemedicalsuppl...e-10-autoset-central-obstructive-sleep-apnea/

I talked to a guy that had the test done and had mild apnea but didnt get a machine even though they give it to people with his level of apnea in other countries. The healthcare system over here is completely trash and outdated. I have read that it can be dangerous for people to use these machines if they dont have sleep apnea (if I remember correct).

 

[Judee]

I wonder if I should go ahead and just buy this one
https://www.noinsurancemedicalsuppl...e-10-autoset-central-obstructive-sleep-apnea/

That company has really bad ratings with the Better Business Bureau (BBB).
https://www.bbb.org/us/nj/ridgefield/profile/hospital-supplies/no-insurance-medical-0221-90165534

(Though the address is different, the phone number listed in both is the same so it's that same company.)

 

[ChookityPop]

That company has really bad ratings with the Better Business Bureau (BBB).
https://www.bbb.org/us/nj/ridgefield/profile/hospital-supplies/no-insurance-medical-0221-90165534

(Though the address is different, the phone number listed in both is the same so it's that same company.)

This is the Cpap that was mentioned in the link i posted. It says it works for both central and obstructive apnea.

AirSense™ 10 AutoSet
https://shop.resmed.com/NO/no/cpap-...r/airsense™-10-autoset-inc-humidifier/p/37259

Its Resmed that makes them and it is Resmed´s CPAP machines patients where I live gets. The other site I shared was only talking about the product (that was why I shared it) I will buy from this site if I end up doing it which I very likely have to. Thanks for the heads up!

 

[GlassCannonLife]

Super interesting! I have copy pasted all of this in my notes app on my phone, thanks!

I wonder if I should go ahead and just buy this one
https://www.noinsurancemedicalsuppl...e-10-autoset-central-obstructive-sleep-apnea/

I talked to a guy that had the test done and had mild apnea but didnt get a machine even though they give it to people with his level of apnea in other countries. The healthcare system over here is completely trash and outdated. I have read that it can be dangerous for people to use these machines if they dont have sleep apnea (if I remember correct).

Some people find CPAP intolerable or unhelpful for their particular SDB. In those cases it is possible to buy second hand CPAPs like the one you mention and flash the chip to that of a cloned BiPAP using a special link cable and a Linux operating system.

 

[ChookityPop]

Some people find CPAP intolerable or unhelpful for their particular SDB. In those cases it is possible to buy second hand CPAPs like the one you mention and flash the chip to that of a cloned BiPAP using a special link cable and a Linux operating system.

Great to know if I end up having to do this. I have to try this!

 

[GlassCannonLife]

I should also mention if you're genuinely having central apnoeas (no way to know without a sleep study I don't think), you would actually need an adaptive servo ventilation aka ASV machine.

You can also flash the resmed into their ASV model (Aircurve 10 ASV), or buy it outright, but it has a forced "backup rate" - ie if you stop breathing it will force-ventilate you. I found this extremely jarring as the backup rate is 15 BPM and I naturally breathe around 12-14 when settling to sleep. It will keep forcing higher and higher pressure support into you if you don't hit the target backup rate.

There is no way to use the ASV mode on resmed machines without this issue. If you also struggle with this, you'd have to use a Philips Dreamstation auto SV instead - they allow you to disable the backup rate.

Overall, I think a good sleep study will really help determine what you may need to pursue.

 

[seamyb]

I get this exact thing. It isn't sleep apnoea, it only started with my illness.

I'm certain the cause of my illness is a colonisation in the sinuses, probably mold. I would look into that. It gets particularly bad when I blast antifungals up my nose, but it can happen at any time. I also get a strange phenomenon where I feel like I can't swallow properly when I'm falling asleep and I think the two are related.

It's either the effect of the toxins on the upper respiratory system, or it's something more systemic with the autonomic nervous system. It certainly feels like I've just forgotten to breathe.

 

[kewia]

Interesting to see other having this.

For me, it seems kind of reactive and related to my lymphatic system/muscle pressure. If my muscles are becoming too tight/stiff it becomes harder to breath.

Then my autonomic system kicks in, and I got agonal respiration just between normal breathing, really strange.
If my pressure over the subclavian/thoracic duct joint is too much, I can't fall asleep due to re-awakening by grasping.

The best solution so far are zeolite, spirulina and coal powder, but not always. I got times when I need to cup my chest serveral times in order to get some relief.

I wish I could talk this to some MD, but in my country it would be that ticket leading you straight into psychiatry.

 

[lenora]

Hi Kewia......Have you noticed if it's on one specific side of another? It could be caused by digestive complaints in addition to so many other problems.

Rib problems (costochondritis) can also leave us with breathing problems. I have those problems, but no longer have respiratory problems. There is an acupressure point that can be gently used on both sides of the front ribs. Generally around the collar bone area....two areas that can be pressed with just one hand. Don't press too tight, or it will become even more aggravated. Good health.....Yours, Lenora.

 

[kewia]

Rib problems (costochondritis) can also leave us with breathing problems.

Yes, I probably have this or pleurodynia or somethig else.

There is an acupressure point that can be gently used on both sides of the front ribs. Generally around the collar bone area....two areas that can be pressed with just one hand.

Yes, sometimes it is lying in that area, but sometime below, but it seems my complete ribcage is affected. The area is too large to be covered by massage, but of course tackling some areas help sometimes.

I've also small knobs around my ribcage, massaging the makes them smaller and relieving some pain. I'm always asking what that might be, biofilm, lymphatic lesions, no idea.
And there are craves tightening your muscles, but they lay so deep you couldn't touch them.

I have those problems, but no longer have respiratory problems

How you left them?

 

[kangaSue]

It can just be a form orthopnea where for one reason or another, your autonomic functions aren't moving fluids efficiently when you are recumbent and can be a benign issue. Inefficient or reduved left ventricle pumping function can be a cause of it though, as can sleep apnoea.

I get it from time to time for no apparent reason, and my husband who has coronary artery disease is often woken by the breathlessness episodes, diagnosed as paroxysmal nocturnal dyspnea.

https://www.ncbi.nlm.nih.gov/books/NBK213/

 

[ChookityPop]

Interesting to see other having this.

For me, it seems kind of reactive and related to my lymphatic system/muscle pressure. If my muscles are becoming too tight/stiff it becomes harder to breath.

Then my autonomic system kicks in, and I got agonal respiration just between normal breathing, really strange.
If my pressure over the subclavian/thoracic duct joint is too much, I can't fall asleep due to re-awakening by grasping.

The best solution so far are zeolite, spirulina and coal powder, but not always. I got times when I need to cup my chest serveral times in order to get some relief.

I wish I could talk this to some MD, but in my country it would be that ticket leading you straight into psychiatry.

Very interesting, very well described, its very similar to how I experience it but I have had trouble with fiding the words describing it. So thanks for posting!

"For me, it seems kind of reactive and related to my lymphatic system/muscle pressure. If my muscles are becoming too tight/stiff it becomes harder to breath."
What do you mean that it seems reactive? And how do you think its related to the lymphatc system/muscle pressure?
I have the exact same thing that it gets harder to breath when I strain my muscles and that can happen very fast if I use my muscles the wrong way etc. Compression helps with pain and muscle function as I can do more with compression. I wonder if this is related to the lymphatic system in some way..


"
Then my autonomic system kicks in, and I got agonal respiration just between normal breathing, really strange.
If my pressure over the subclavian/thoracic duct joint is too much, I can't fall asleep due to re-awakening by grasping."
This is exactly how I experience it.

"The best solution so far are zeolite, spirulina and coal powder, but not always. I got times when I need to cup my chest serveral times in order to get some relief."
I need to try this more focused than I have done in the past. How do they help with your symptoms?
And what do you mean with cup your chest? Push it outwards?

It would be great to find a MD to discuss this with. It also feels like hypoxia like the muscles are starved of oxygen when the oxygen/energy demand increases.

 

[ChookityPop]

I get this exact thing. It isn't sleep apnoea, it only started with my illness.

I'm certain the cause of my illness is a colonisation in the sinuses, probably mold. I would look into that. It gets particularly bad when I blast antifungals up my nose, but it can happen at any time. I also get a strange phenomenon where I feel like I can't swallow properly when I'm falling asleep and I think the two are related.

It's either the effect of the toxins on the upper respiratory system, or it's something more systemic with the autonomic nervous system. It certainly feels like I've just forgotten to breathe.

Interesting. Have you tested for mold and mycotoxins etc?

 

[ChookityPop]

I should also mention if you're genuinely having central apnoeas (no way to know without a sleep study I don't think), you would actually need an adaptive servo ventilation aka ASV machine.

You can also flash the resmed into their ASV model (Aircurve 10 ASV), or buy it outright, but it has a forced "backup rate" - ie if you stop breathing it will force-ventilate you. I found this extremely jarring as the backup rate is 15 BPM and I naturally breathe around 12-14 when settling to sleep. It will keep forcing higher and higher pressure support into you if you don't hit the target backup rate.

There is no way to use the ASV mode on resmed machines without this issue. If you also struggle with this, you'd have to use a Philips Dreamstation auto SV instead - they allow you to disable the backup rate.

Overall, I think a good sleep study will really help determine what you may need to pursue.

This is great to know, thank you! Im waiting for a sleep study atm and I will ask for a prolonged sleep study to be "sure". I rarely wake up gasping for air, so if I need to do that to test "positive" it can be difficult.. Maybe I would need to trigger them with staying up all night.