I have a form of central sleep apnoea, which means my upper airway stays open during sleep, however my body just doesn’t take breaths, leading to significant and sudden hypoxemia within a couple of minutes of falling asleep. These two-three minute sleeps was what I would have for maybe two hours, then there would be so much adrenaline coursing around that I was shaking and wide awake (despite being extremely fatigued and exhausted). Six hours later, the same thing: collapse pretty much where I was standing because I’m so tired, and be asleep for two - three mins, while not breathing, and each wake cycle I’d be gasping for air and my heart racing and shaking my entire chest (I could feel the blood pressure was so high, I was sensing my pulse in the arteries in my legs, arms, and in my brain).
It went on until my body was unable to produce enough adrenaline to wake me, and I would start to go four-five mins asleep with zero breathing.
I honestly thought sleep would end my life, but when I explained this to a colleague (I was working in the sleep technology industry) he said I should test a few non invasive ventilators - so I did.
These machines work on the correct breath rate, and correct volume of air, and provide the pressures (IPAP and EPAP) necessary to ensure adequate gas exchange in the alveoli.
Monitoring oxygen shows I’m not critically and dangerously desaturating anymore, and I have been using ventilation to keep me alive for the last 9 years (used during every second I’m asleep, as well as when I can’t efficiently breathe during the day (sustained sitting position at my desk, etc - I just put the vent on and I can breathe while I type..I work from home).
It took me around 5 months to become completely accustomed to ventilation (I started out being awake for hours on the machine because it was so different from the usual absence of breathing that I would fall asleep with), however after that time, I got so used to it that when I feel drowsy I actually ‘crave’ (similar to a food craving when hungry) the support to breathe that it provides. I still use the pulse oxymetry lead a couple of times a week (the lead connects to the machine, like the ones at the hospital with the fingertip lead that plugs into the monitor), just to make sure the breath rate and volume of air is working to provide enough air movement to keep oxygen levels normal.
Before using, when I woke up after a few cycles of zero air, my hands, lips, tongue, and legs would be a grey-blue colour and be painful like when you’ve cut off the circulation to limbs, and now, none of that occurs.
In terms of what I call metabolic adjustment, it took my body around two years to get back to proper cellular metabolism of oxygen (when chronically low in oxygen, the body makes adjustments in the way cells function and replicate), but once that recovery took place, I started to really feel like I was alive again.
I used to have such debilitating headaches from low oxygen that I would sometimes not be able to hear, lose most of my vision, and be unable to walk in a straight line (I would crawl from the bedroom to the bathroom, the room spinning like a carnival ride the entire way).
A savvy sleep doc prescribed a ventilator once I showed him the vent statistics from the one I had used from work, saying there was no need to wait for a diagnostic sleep study - the report clearly showed only 4% independent breathing, and he said to me he wondered how I was still alive and hadn’t had a massive stroke or heart attack.
So that’s how it was for me with a complicated form of central sleep apnoea. I would not wish it on anyone, because it’s so frightening, and very concerning for health.
So great that you found this advice! What is a non invasive nose machine? I’ve seen some advertising on tv of not using the usual box and cords..but where to look..if you’d just rather not have all the equipment around you…any brand names? Glad you overcame this most difficult challenge.
I was diagnosed with obstructive sleep apnea. I started using a CPAP machine about two months ago. Initially i was feeling much more refreshed and energetic. The last few weeks i have been waking up during the night and unable to get back to sleep for awhile. I don’t feel the tiredness that was before the CPAP, but just not as energetic as the first month of CPAP. I saw my provider last week and mentioned this to her.I get weekly allergy shots and recently despite the injections, I have been taking OTC meds for allergies. She seemed to think that the allergy symptoms were responsible for my not feeling as well. How long does it take for your body to feel refreshed and wake up energetic every morning?
I was diagnosed with obstructive sleep apnea. I started using a CPAP machine about two months ago. Initially i was feeling much more refreshed and energetic. The last few weeks i have been waking up during the night and unable to get back to sleep for awhile. I don’t feel the tiredness that was before the CPAP, but just not as energetic as the first month of CPAP. I saw my provider last week and mentioned this to her.I get weekly allergy shots and recently despite the injections, I have been taking OTC meds for allergies. She seemed to think that the allergy symptoms were responsible for my not feeling as well. How long does it take for your body to feel refreshed and wake up energetic every morning?
I can't speak for anyone else but it took me about a year before feeling the benefits of using my CPAP. I am a mouth breather and have tried many different masks over the past 4 years. I would love it if I could get by with a nasal mask or under the nose full face mask but I keep having to go back to the one that covers the nose and mouth. My latest failure was the new ResMed F40. I normally wake up several times during the night but find that when I can keep my AHI numbers under 4 I feel a lot better in the morning. My sleep doctor told me that anything under 4 was good for me.
Thanks, I am going go go back and look at my numbers. It seems that in the beginning, i had more numbers at 2 and 3, but lately i have been getting quite a few 5. Also good to know that it took a year to feel the full benefits. I was happy that initially inwas feeling that burst of energy initially. Lately i have not and i hope it will start improving. Did your doctor offer any suggestions to help your ani stay under 4?
Thanks, I am going go go back and look at my numbers. It seems that in the beginning, i had more numbers at 2 and 3, but lately i have been getting quite a few 5. Also good to know that it took a year to feel the full benefits. I was happy that initially inwas feeling that burst of energy initially. Lately i have not and i hope it will start improving. Did your doctor offer any suggestions to help your ani stay under 4?
I received my Resmed Airsense 11 a year ago. I now own it as I had to rent it for a while. My CPAP machine works great and I don’t even hear it. However, I don’t wake up refreshed.. I also have a headache especially in the morning. I don’t know if what I’m going to say helps anyone but I’ve developed a right vocal cord paralysis. It doesn’t work. It makes it difficult to breathe and talk. I’m in the process of getting a handful of tests . Including an esophagus “stretch “ the surgery opened up my esophagus. It had gotten too narrow and I was aspirating food and liquids into my lungs instead of my stomach. Made it easier to swallow.
CPAP related? I’m not sure.
My right vocal cord paralyzed I blamed the CPAP machine. I have also been informed that I have a white spot on my right lung. CPAP related? Don’t know.
I clear my throat all day long. My throat burns me because it is so painful to use it. My talking is down to a whisper and I have difficulty breathing. I’m operating on one vocal cord for everything.
I started wondering if it’s caused by my CPAP machine. Do I really need it?
I have one or two episodes and sometimes no episode of waking up to a gasp.
It’s a Resmed so it’s top of the line and I haven’t used it in a while. I sleep all night with no more CPAP now but I received an email asking if I was having problems with it. I have sleep apnea and COPD . The CPAP has become useless.
I looked up the ASPIRE system where they implant a mini CPAP electrical system in your shoulder and attach it to wires attached to your tongue as the back of the tongue is suspect.
You have to qualify and I was but I checked the cost and it is between $30 and $40 thousand dollars. They said it was due to the expensive surgery. I said forget it even though my insurance company approved it. I don’t use anything now and I’ve gotten no complaints about snoring. I don’t snore anymore even without it.
I tend to blame my Resmed for at least one of my issues.
It’s Bluetooth and uses a MyAir app which lets my doctor or DME to monitor me. I used nasal pillows as they were very comfortable to sleep with. I don’t know what to do with it now.
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Wow, that sounds horrific!
So great that you found this advice! What is a non invasive nose machine? I’ve seen some advertising on tv of not using the usual box and cords..but where to look..if you’d just rather not have all the equipment around you…any brand names? Glad you overcame this most difficult challenge.
I was diagnosed with obstructive sleep apnea. I started using a CPAP machine about two months ago. Initially i was feeling much more refreshed and energetic. The last few weeks i have been waking up during the night and unable to get back to sleep for awhile. I don’t feel the tiredness that was before the CPAP, but just not as energetic as the first month of CPAP. I saw my provider last week and mentioned this to her.I get weekly allergy shots and recently despite the injections, I have been taking OTC meds for allergies. She seemed to think that the allergy symptoms were responsible for my not feeling as well. How long does it take for your body to feel refreshed and wake up energetic every morning?
I can't speak for anyone else but it took me about a year before feeling the benefits of using my CPAP. I am a mouth breather and have tried many different masks over the past 4 years. I would love it if I could get by with a nasal mask or under the nose full face mask but I keep having to go back to the one that covers the nose and mouth. My latest failure was the new ResMed F40. I normally wake up several times during the night but find that when I can keep my AHI numbers under 4 I feel a lot better in the morning. My sleep doctor told me that anything under 4 was good for me.
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1 ReactionThanks, I am going go go back and look at my numbers. It seems that in the beginning, i had more numbers at 2 and 3, but lately i have been getting quite a few 5. Also good to know that it took a year to feel the full benefits. I was happy that initially inwas feeling that burst of energy initially. Lately i have not and i hope it will start improving. Did your doctor offer any suggestions to help your ani stay under 4?
I received my Resmed Airsense 11 a year ago. I now own it as I had to rent it for a while. My CPAP machine works great and I don’t even hear it. However, I don’t wake up refreshed.. I also have a headache especially in the morning. I don’t know if what I’m going to say helps anyone but I’ve developed a right vocal cord paralysis. It doesn’t work. It makes it difficult to breathe and talk. I’m in the process of getting a handful of tests . Including an esophagus “stretch “ the surgery opened up my esophagus. It had gotten too narrow and I was aspirating food and liquids into my lungs instead of my stomach. Made it easier to swallow.
CPAP related? I’m not sure.
My right vocal cord paralyzed I blamed the CPAP machine. I have also been informed that I have a white spot on my right lung. CPAP related? Don’t know.
I clear my throat all day long. My throat burns me because it is so painful to use it. My talking is down to a whisper and I have difficulty breathing. I’m operating on one vocal cord for everything.
I started wondering if it’s caused by my CPAP machine. Do I really need it?
I have one or two episodes and sometimes no episode of waking up to a gasp.
It’s a Resmed so it’s top of the line and I haven’t used it in a while. I sleep all night with no more CPAP now but I received an email asking if I was having problems with it. I have sleep apnea and COPD . The CPAP has become useless.
I looked up the ASPIRE system where they implant a mini CPAP electrical system in your shoulder and attach it to wires attached to your tongue as the back of the tongue is suspect.
You have to qualify and I was but I checked the cost and it is between $30 and $40 thousand dollars. They said it was due to the expensive surgery. I said forget it even though my insurance company approved it. I don’t use anything now and I’ve gotten no complaints about snoring. I don’t snore anymore even without it.
I tend to blame my Resmed for at least one of my issues.
It’s Bluetooth and uses a MyAir app which lets my doctor or DME to monitor me. I used nasal pillows as they were very comfortable to sleep with. I don’t know what to do with it now.