Question about Apneas

[blizzard2014]

I'm sorry if I'm posting too many topics lately. I remember reading something on someone else's post about apnea's yesterday and I want to ask a question about this. I have had three sleep studies done and all of them have such different results. One shows very low Apnea at 8 events per hour. Another shows some apnea with a constant low oxygen level of 88 percent. I never go above 88 percent all night. The last study shows Moderate Apnea with 21 events per hour and some central apneas. I had trouble sleeping on all of these tests, so they are probably not accurate. All of this was corrected with the highest pressure setting they have on a BIPAP machine. They stopped all the apneas and my oxygen level went to 94 when sleeping. The study also shows that I spend over 70 percent of my sleep time in stage 2 sleep and almost no time in REM. I think it was like 1.7 percent of sleep time in REM. Most of my sleep time is spent in stage 1 and stage 2 sleep. Also no stage three sleep. I'm just wondering how all of this can tie into autonomic dysfunction. I showed some low heart rates and high ones, but no PVC's or other events were recorded. I tried to use the BIPAP machine with ramp up feature a few times but it just makes me an insomniac every time I put the mask on. My pressure settings are 24 I believe, the highest setting there is. I hate the thing so here it sits collecting dust. I would need a Xanax pill in order to be able to fall asleep with the mask on. I go for long periods of time not dreaming, then dream for days and days and days. Lately with my out of control BP, I am more on the restless side than anything else. Just wondering if it is real sleep apnea or just autonomic problems. What do you guys think?

[Pistol]

Well - it can be related to either. Of course the apnea will prevent you from getting proper REM sleep. But the dysautonomia also causes this due to the adrenalin levels not falling when they should I am hyperadrenergic and I wake up every 3 hours and am right awake. That is when normally the adrenalin goes down and you can enter the REM stage. I am sorry about all your problems. I definitely understand how you can't use the BIPAP - I could not sleep with that on either. However - it would be a good idea to try and get used to it. My friends husband has to use one and it took him a long time to be able to sleep with it on. But today he is used to it and sleeps much better. 

[Colomom]

My teenage son has autonomic dysfunction and sleep apnea. His AHI was split evenly with 50% of his events being central apnea’s and 50% obstructive hypopneas. Most concerning was that my son was hypoxic during sleep. Thankfully with CPAP my son’s nighttime oxygen levels have improved. Treating my son’s sleep apnea has been life changing for him.

Sleep can vary from night to night, it’s not uncommon to have a variance in AHI numbers on different nights. Most people’s AHIs are highest during REM, it’s likely that your sleep studies may have actually underestimated your AHI because you had so little REM sleep during them. Your low oxygen saturation’s during sleep are concerning, I strongly encourage you to dig out your BIPAP and give it another try. Have you discussed your difficulties with BIPAP with your sleep doctor? Perhaps your doctor could start you on a lower pressure to help you adjust to using the machine. Trying a different style of mask might also help, it is common to have to try out a number of masks before finding one that is right for you. Some also find using the machine while watching TV or reading can help the brain adjust to using a PAP machine. Good luck, I hope you are able to find your way to a restful nights sleep!

[blizzard2014]

8 hours ago, Colomom said:

My teenage son has autonomic dysfunction and sleep apnea. His AHI was split evenly with 50% of his events being central apnea’s and 50% obstructive hypopneas. Most concerning was that my son was hypoxic during sleep. Thankfully with CPAP my son’s nighttime oxygen levels have improved. Treating my son’s sleep apnea has been life changing for him.

Sleep can vary from night to night, it’s not uncommon to have a variance in AHI numbers on different nights. Most people’s AHIs are highest during REM, it’s likely that your sleep studies may have actually underestimated your AHI because you had so little REM sleep during them. Your low oxygen saturation’s during sleep are concerning, I strongly encourage you to dig out your BIPAP and give it another try. Have you discussed your difficulties with BIPAP with your sleep doctor? Perhaps your doctor could start you on a lower pressure to help you adjust to using the machine. Trying a different style of mask might also help, it is common to have to try out a number of masks before finding one that is right for you. Some also find using the machine while watching TV or reading can help the brain adjust to using a PAP machine. Good luck, I hope you are able to find your way to a restful nights sleep!

yeah, most of my hypopneas happened during rem sleep. Well they kept on knocking me out of REM sleep. The doc was unwilling to work with me on giving me anxiety meds so I just dropped him and never went back. I am kind of claustrophobic and the mask makes me feel like I'm suffocating. The doc also did not want to lower pressure settings because it would not alleviate the events. On my sleep study, when they titrated the pressures, I had symptoms all the way up until the last 30 minutes of the test when they forced the highest level of pressure into my mouth. I have severe resistance in my throat from what the doc says. Any lower pressure would not work. Also, they put me on BIPAP with a pre-programmed breathing loop. That is because sometimes I do not breathe, so the machine forces me to breathe automatically every few seconds. I hate the thing so much It made me fill out a DNR for no respiratory machines. It must be h*** living on mechanical breathing. I may try the machine again, but with the hyperpots, it just causes me to stay awake. I can be dead tired and as soon as that machine goes off, I am wired up like crazy. I had to take sleeping pills at the sleep lab and those barely worked. 

[blizzard2014]

I keep on dropping doctors because they do not listen to the patient. If I had something to sedate me, I could fall asleep and then the machine not bother me. I also have chronic pain and that is another thing that wires me up at night. Even Ambien only works for a few hours and then wears off for me. I guess in a way I am doomed with the low oxygens at night. I might ask for straight up oxygen take for at night because in the hospital with PE's I did not drop into the 80's at night with the supplemental oxygen. But my GP was not overly-concerned about the low oxygen, says everyone's oxygen goes low at night. Just hard to find good help with these issues. If the machine had a lower pressure like when it ramps up half way and it around 15 pressure, it is fine. I just cannot tolerate the high pressure, but without the high pressure, it will not work. A pressure level of 15 does absolutely nothing for me. It would be a waste of time even trying. 

[Peter Charlton]

There are a couple of types of sleep apnea, "Obstructive" which tends to go hand in hand with snoring, its when soft tissues relax and block the airway, I would guess this has little to do with Dysautonomia, the low oxygen readings tend to come as frequent spikes. Though having said that, the Autonomic Nervous System does dilate and constrict the bronchial tubes.

The rarer type however is called "Central sleep apnea" and as far as I can see, has everything to do with the Autonomic Nervous System as it is this system that detects levels of carbon dioxide and oxygen in the blood, and maintains the correct levels without you even being aware, if this system isnt working correctly, then blood oxygen will not be at the levels it should be.  This is one of the symptoms I experienced when beta blockers knocked my ANS for six, I post one of my all night reviews, you will see that rather than spikes, my blood oxygen is staying low for long periods.

Funny enough, back in April, 13 months after coming off beta blockers, this particular symptom pretty much went away, I no longer get the breathlessness, and the low blood oxygen at night.

 

[blizzard2014]

2 minutes ago, Peter Charlton said:

There are a couple of types of sleep apnea, "Obstructive" which tends to go hand in hand with snoring, its when soft tissues relax and block the airway, I would guess this has little to do with Dysautonomia, the low oxygen readings tend to come as frequent spikes. Though having said that, the Autonomic Nervous System does dilate and constrict the bronchial tubes.

The rarer type however is called "Central sleep apnea" and as far as I can see, has everything to do with the Autonomic Nervous System as it is this system that detects levels of carbon dioxide and oxygen in the blood, and maintains the correct levels without you even being aware, if this system isnt working correctly, then blood oxygen will not be at the levels it should be.  This is one of the symptoms I experienced when beta blockers knocked my ANS for six, I post one of my all night reviews, you will see that rather than spikes, my blood oxygen is staying low for long periods.

Funny enough, back in April, 13 months after coming off beta blockers, this particular symptom pretty much went away, I no longer get the breathlessness, and the low blood oxygen at night.

 

Mine was not spiking either, it was pretty much at 88 percent most of the night. But I was not on any BP meds when I had the sleep study done. Most of my events are hypopneas and they actually suspect it is upper airway resistance syndrome in my case. I will post my results if I can get them up on here.

[Colomom]

I understand and relate to your frustration with doctors. The first sleep doctor/ pulmonologist that my son saw was horrible. We fired him and got lucky on the second try. My son also had difficulty tolerating the machine. To help my son tolerate CPAP his doctor started him on a low pressure and titrated him up slowly to the pressure he needed as he became used to the machine. Many people experience claustrophobia when starting PAP therapy, sometimes changing masks can help with claustrophobia. Your sleep doctor should have worked harder to make your sleep study more representative of your normal sleep and should have made an effort to help you find a treatment you could tolerate. My guess is that few people would be able to handle a starting pressure of 24. Your doctors rigidity and unwillingness to work find a solution for you is unacceptable, you were smart to move on. I encourage you to find another sleep doctor, one who is board certified in sleep medicine and Pulmonolgy would probably be your best bet. If you cannot tolerate BIPAP, ASV may be a better fit for you. ASV is the best treatment for central apnea’s, but because it is the most expensive option insurance generally requires that patients “fail” CPAP and BIPAP before ASV can be offered.

To qualify for supplemental oxygen Medicare requires O2 sats be under 88 for 5 minutes over the entire night, you are well below that threshold. Hypoxia damages the cardio vascular system and the brain, it is likely a significant contributing factor to your high blood pressure. Your GP is wrong, your nighttime oxygen saturation’s are to low, your doctors should be doing whatever they can to address your hypoxia.

The other issue with sleep apnea is arousals. With your  “moderate” AHI of 21 your brain may be waking your body up every 3 minutes to breathe, it’s no wonder you are exhausted and unable to achieve deep sleep. Add on top of that the fact that they suspect RERAS which can create even more arousals.  I am amazed that you ever able  make it out of bed.

My heart breaks for you, I can’t imagine how difficult it must be to be in your shoes. The one thing I am thankful for is that when my son’s problems began to manifest he was still living at home, with his symptoms my son would have never been able to navigate the complexities of autonomic dysfunction, sleep problems, and the medical system by himself. 

[WarpedTrekker]

I had similar issues and now using a BIPAP in combination with an oral dental appliance (ResMed Narval CC). This brings my jaw and tongue forward so it doesn't block my airway. I also went to an ENT doctor that performed a DISE procedure (drug-induced sleep endoscopy).  He found the base of my tongue in back of my throat was the main thing causing my obstructions.  I'd suggest looking into getting this short procedure done. It takes place in a surgical center, but only takes about 15min that you are asleep and then they wake you up. They use a camera down your throat to check for blockages. Then, once you know what is causing your blockage, there is surgery that could help. Some ENT doctors do a new style of surgery with a Davinci machine to cut out tissue in your throat and tongue.  So all of those are options, if you don't like BIPAP masks.

I use both my BIPAP (ResMed AirCurve 10) with AirTouch mask, and my Oral-Dental appliance. It is a PAIN to wear at night, but if I don't wear it, I suffer from low oxygen levels, racing heart rate, palpitations, and other symptoms. I had several sleep studies, and always came back "mild apnea" with AHI 7, but I had NO REM sleep during one study.

Even with my low AHI 7, this was causing some major issues for me which is why I force myself to use my equipment. I sleep better now. I'm at the point though of asking my doctor again about surgery to reposition my jaw and cut out some tissues and fix my deviated septum.

[blizzard2014]

8 hours ago, Colomom said:

I understand and relate to your frustration with doctors. The first sleep doctor/ pulmonologist that my son saw was horrible. We fired him and got lucky on the second try. My son also had difficulty tolerating the machine. To help my son tolerate CPAP his doctor started him on a low pressure and titrated him up slowly to the pressure he needed as he became used to the machine. Many people experience claustrophobia when starting PAP therapy, sometimes changing masks can help with claustrophobia. Your sleep doctor should have worked harder to make your sleep study more representative of your normal sleep and should have made an effort to help you find a treatment you could tolerate. My guess is that few people would be able to handle a starting pressure of 24. Your doctors rigidity and unwillingness to work find a solution for you is unacceptable, you were smart to move on. I encourage you to find another sleep doctor, one who is board certified in sleep medicine and Pulmonolgy would probably be your best bet. If you cannot tolerate BIPAP, ASV may be a better fit for you. ASV is the best treatment for central apnea’s, but because it is the most expensive option insurance generally requires that patients “fail” CPAP and BIPAP before ASV can be offered.

To qualify for supplemental oxygen Medicare requires O2 sats be under 88 for 5 minutes over the entire night, you are well below that threshold. Hypoxia damages the cardio vascular system and the brain, it is likely a significant contributing factor to your high blood pressure. Your GP is wrong, your nighttime oxygen saturation’s are to low, your doctors should be doing whatever they can to address your hypoxia.

The other issue with sleep apnea is arousals. With your  “moderate” AHI of 21 your brain may be waking your body up every 3 minutes to breathe, it’s no wonder you are exhausted and unable to achieve deep sleep. Add on top of that the fact that they suspect RERAS which can create even more arousals.  I am amazed that you ever able  make it out of bed.

My heart breaks for you, I can’t imagine how difficult it must be to be in your shoes. The one thing I am thankful for is that when my son’s problems began to manifest he was still living at home, with his symptoms my sonI have would have never been able to navigate the complexities of autonomic dysfunction, sleep problems, and the medical system by himself. 

I have to slam expresso shots all day to stay awake. Without the coffee, I will be asleep all day. I guess the low oxygen is screwing me up too. One day I will try and wear the mask again. 

[RecipeForDisaster]

I use an APAP for sleep apnea myself and it took years to optimize my therapy. I'd say I've tried 15 masks and different liners and stuff too. I wouldn't be without it now. I didn't see any mention of automatic titration, where your machine stays within a range and doesn't hit that 24 unless it's needed that night? It could help...

 

I'm on another forum, CPAPtalk, that has been really helpful. There are lots of tricks shared there. Good luck-I hope you can make the machine work for you since it clearly seems to be needed! IMO, if you need that high a pressure, it's very important that you consistently use the machine.