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RELENTLESS sleep-transition central apneas
#1
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RELENTLESS sleep-transition central apneas
I'll try to give a brief history. About 4 months ago, I started jolting awake as I drifted into sleep. Happened a few times a week. Would get up, try again later, would usually go away. I thought it was "hypnic jerks" at the time. Continued like this for a few months. About 6 weeks ago, started happening almost every night and it was relentless. No exaggeration: it would keep me from sleeping for 30-40 hours straight. A living hell. Put pulse oximeter on my finger and saw O2 was dropping to low-mid 80s each time I checked after a "jolt".

Got a 2-day at-home sleep study. First night, ironically, slept well (subjectively). No centrals at onset. A lot of obstructives. Second night, didn't sleep at all because of the "jolts". Doctor drilled down into the data: sure enough, no breathing effort, O2 dropping to low 80s, corresponding to the timestamps I gave him of these jolts.

Prescribed AirCurve 10 VAuto. Said I had to "fail" bipap, then do in-lab sleep test, to qualify for an ASV machine. Ugh. Got my machine about a week ago. Yup, does nothing for the centrals as expected. Even tried it on pure CPAP mode as I found a paper showing elimination of centrals (suspected to be due to increased re-breathing against the pressure of CPAP). Didn't work. There's also slight hope due to increased lung volume after CPAP use, which seems to be one of the factors relating to centrals, but that would take months.

Right now, if I don't take 0.25-0.5mg of xanax, I will not sleep at all. I spent a hellish 2 weeks before taking medication in a cycle of staying up 30-40 hours and then sleeping 6-10 hours. I will not repeat that, yet I try every night to sleep medication-free. But even if I relax and get the jolts to feel like simply "being startled", after 10 of those in a row, there is way too much adrenaline in my system. I've confirmed that taking the xanax "fixes" the centrals. I'll have 5 minutes of them, a couple of muted startles, and then sleep. So, the medication is not making me sleep through them, it's actually preventing the endless negative feedback loop of arousal. Still, I want to be medication-free and get to the source of the problem.

Attached is a night trying to sleep. I took 0.25mg xanax then went to bed immediately (normally I wait for it to "kick in"). 18 centrals in a half-hour, at least half of which jolted me awake (I've only marked the major "awake" times, there were at least 8 arousals). The only reason I eventually slept was because of the xanax. On nights when I wait for it to kick in and/or take 0.5mg, I may only get 5 minutes of centrals. I don't get centrals during the rest of the night. That is, not unless I wake up fully and then try to drift off into sleep again.

Also attached is a zoom on a nap I recently tried to take. No medication. Although it's flagged as a 10-second central then a 27-second central, it pretty much looks to me like I held my breath for about 90 seconds. Tidal volume is falling throughout, despite some flow. Woke up with a huge jolt at the end of that. O2 meter when I put it on read 83.

1. Has anyone else suffering from this found a solution (other than ASV) that helps with this? Whether that be some natural medication (preferably), oxygen supplementation, CO2 re-breathing, some kind of technique or whatever?

2. To those who had sleep-onset issues in particular, has ASV helped? I am thinking a "forced breath" during this delicate time of falling asleep is going to wake me up just as much as I am waking up now and that the cycle will not end.

3. As to what might be causing this, I have had an echocardiogram and pulmonary function test. My thyroid levels are normal. I will insist on an MRI the next time I see my doctor to check for brainstem lesions. Is there anything else I need to look for? For anyone else who had this, did you ever find the root cause?

Thanks for your time and any help/info/insight you can provide. I feel really dismayed that this issue became augmented over the last couple of months and feel like there must be something really wrong with me. I can't even take a nap when sleep-deprived (and I refuse to take a pill just to nap).


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#2
RE: RELENTLESS sleep-transition central apneas
Based on your background story, your doctor is completely on top of this situation, is aware you probably have central or complex apnea, and knows the ropes on how to get you to ASV. Your job is going to be to do your best to use the machine until he can get insurance approval for ASV. We can help you to be as comfortable as possible, but it is reassuring to know you are already in progress towards the therapy you need. Most insurance and Medicare requires a diagnosis appropriate to the use of ASV and requires that you fail at CPAP and/or Bilevel therapy, before they will reimburse for the ASV (bilevel with backup (HCPCS E0471) http://www.apneaboard.com/wiki/index.php...ling_Codes .

It would help us to see a full night of therapy with the left margin statistics and settings as shown in the Organizing OSCAR Charts link in my signature. You appear to be using Vauto mode with an unknown range of pressure and pressure support. The CA events at sleep onset are going to be disruptive to your sleep until you have a therapy that kicks in a breath when you don't take one. The apnea causes a cascade of adrenaline which raises heart rate and creates an abrupt arousal to cause you to breathe. Once you are using ASV this should be significantly relieved. We have many members that use ASV therapy, so stick around and learn from them how to more quickly adapt once you get that machine.

The best way to reduce these central events is to use low, constant pressure with little or no pressure support. Let us see the full-night charts and we can make a suggestion. ASV will eliminate this issue, just keep your doctor informed of your discomfort so he expedites the process to get you approved.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: RELENTLESS sleep-transition central apneas
At this point contrary to Sleeprider's suggestion, id suggest you use a very high ps. Once you tried constant pressure for a few days and it didnt work. Set the EPAP to 8 and IPAP 15. Do it during the day and check how comfortable it feels to you. Trigger to very high. Cycle at default. I'm suggesting this due to personal experience with jerks where constant pressure was of no help, I assume at least in my case the cause is different to regular CA's.

Then again maybe you should put the worst settings possible so you 'fail' bipap.
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#4
RE: RELENTLESS sleep-transition central apneas
(05-31-2019, 01:01 AM)crowtor Wrote: At this point contrary to Sleeprider's suggestion, id suggest you use a very high ps. Once you tried constant pressure for a few days and it didnt work. Set the EPAP to 8 and IPAP 15. Do it during the day and check how comfortable it feels to you. Trigger to very high. Cycle at default. I'm suggesting this due to personal experience with jerks where constant pressure was of no help, I assume at least in my case the cause is different to regular CA's.

Then again maybe you should put the worst settings possible so you 'fail' bipap.

This strategy would not cause centrals to be treated because there is no backup rate to switch to IPAP when the user does not spontaneously breathe.  Your suggestion would not only make his condition much worse, it is irresponsible and potentially dangerous to exacerbate the already bad central apnea problem.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: RELENTLESS sleep-transition central apneas
(05-30-2019, 04:03 PM)Sleeprider Wrote: The best way to reduce these central events is to use low, constant pressure with little or no pressure support. 

I appreciate you looking out for me! I could see how crowtor's settings could cause more centrals, but I can also see how it would almost function like an ASV due to the trigger set to Very High. It probably wouldn't be a good setting to use all night long, but I am curious to try things when awake to see how they feel, and also if I could do it on the verge of taking a nap to see if it's helpful. It's almost like I need 2 machines: one to deal with what happens at sleep onset and one for the rest of the night! I suppose an ASV could handle that.

I did try a night of constant pressure at 6 cm, which was all I could tolerate at the time. The centrals were still there, and my obstructives went through the roof because the pressure was not high enough. But I like the idea of trying to reduce the PS to 0, start min EPAP at 4, but allow max IPAP to rise to wherever. Because I do not get many obstructives at sleep onset, so the pressure should stay low during this issue and only rise when I'm in the deeper stages of sleep when I need it for the obstructives, and I hardly get any centrals at those stages.


(05-31-2019, 01:01 AM)crowtor Wrote: Set the EPAP to 8 and IPAP 15. Do it during the day and check how comfortable it feels to you. Trigger to very high. Cycle at default. I'm suggesting this due to personal experience with jerks where constant pressure was of no help

Okay, so tell me more about what's worked for you! Since you have IPAP/EPAP fixed, are you in S mode? If so, do you have a Ramp Time set? If using VAuto mode, so just set those values and put PS at 7 so nothing will change throughout the night?

Were the jerks you were having flagged as Centrals? So is the idea here that the very high Trigger will push a breath at the slightest detection of effort? I'm sure this may startle me awake, but I suppose it's better than not breathing  Wink


Sleeprider (again) - I saw your wiki on EERS. Is there an ultra low-tech way I could try this, leaving the CPAP machine out of it for now? I'd just be curious to see if extra CO2 would help me. Like really just putting a shirt over me as I sleep on my side (so it's not flush to my face) and cutting x amount of holes in it or something like that? Or do I need the "dead space" of a tube? I have a nasal mask that I will never use, it has its own hose. What if I cover the vents, and put holes in the tube further down and block off the other end, would that work in the absence of pressurized air? How far down the tube would I put the holes?
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#6
RE: RELENTLESS sleep-transition central apneas
(05-31-2019, 07:22 AM)Sleeprider Wrote:
(05-31-2019, 01:01 AM)crowtor Wrote: At this point contrary to Sleeprider's suggestion, id suggest you use a very high ps. Once you tried constant pressure for a few days and it didnt work. Set the EPAP to 8 and IPAP 15. Do it during the day and check how comfortable it feels to you. Trigger to very high. Cycle at default. I'm suggesting this due to personal experience with jerks where constant pressure was of no help, I assume at least in my case the cause is different to regular CA's.

Then again maybe you should put the worst settings possible so you 'fail' bipap.

This strategy would not cause centrals to be treated because there is no backup rate to switch to IPAP when the user does not spontaneously breathe.  Your suggestion would not only make his condition much worse, it is irresponsible and potentially dangerous to exacerbate the already bad central apnea problem.

Like the bolded part right above states, I had the same 'jerk' sleep problem like OP. I've fixed it with EPAP 10 and IPAP 17, though I suggested lower settings because not everyone is used to high pressures. Thats why I also said to try my setting suggestion after trying yours. Too much CO2 depresses the CNS too.
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#7
RE: RELENTLESS sleep-transition central apneas
(05-31-2019, 03:57 PM)idlewire Wrote:
(05-30-2019, 04:03 PM)Sleeprider Wrote: The best way to reduce these central events is to use low, constant pressure with little or no pressure support. 

I appreciate you looking out for me! I could see how crowtor's settings could cause more centrals, but I can also see how it would almost function like an ASV due to the trigger set to Very High. It probably wouldn't be a good setting to use all night long, but I am curious to try things when awake to see how they feel, and also if I could do it on the verge of taking a nap to see if it's helpful. It's almost like I need 2 machines: one to deal with what happens at sleep onset and one for the rest of the night! I suppose an ASV could handle that.

I did try a night of constant pressure at 6 cm, which was all I could tolerate at the time. The centrals were still there, and my obstructives went through the roof because the pressure was not high enough. But I like the idea of trying to reduce the PS to 0, start min EPAP at 4, but allow max IPAP to rise to wherever. Because I do not get many obstructives at sleep onset, so the pressure should stay low during this issue and only rise when I'm in the deeper stages of sleep when I need it for the obstructives, and I hardly get any centrals at those stages.


(05-31-2019, 01:01 AM)crowtor Wrote: Set the EPAP to 8 and IPAP 15. Do it during the day and check how comfortable it feels to you. Trigger to very high. Cycle at default. I'm suggesting this due to personal experience with jerks where constant pressure was of no help

Okay, so tell me more about what's worked for you! Since you have IPAP/EPAP fixed, are you in S mode? If so, do you have a Ramp Time set? If using VAuto mode, so just set those values and put PS at 7 so nothing will change throughout the night?

Were the jerks you were having flagged as Centrals? So is the idea here that the very high Trigger will push a breath at the slightest detection of effort? I'm sure this may startle me awake, but I suppose it's better than not breathing  Wink


Sleeprider (again) - I saw your wiki on EERS. Is there an ultra low-tech way I could try this, leaving the CPAP machine out of it for now? I'd just be curious to see if extra CO2 would help me. Like really just putting a shirt over me as I sleep on my side (so it's not flush to my face) and cutting x amount of holes in it or something like that? Or do I need the "dead space" of a tube? I have a nasal mask that I will never use, it has its own hose. What if I cover the vents, and put holes in the tube further down and block off the other end, would that work in the absence of pressurized air? How far down the tube would I put the holes?

My Ramp is always off and I'm in S mode. My jerks were exactly like the ones you described and only happen when falling asleep. No breathing effort detected, etc. but after I set up trigger to very high, somehow the machine did detect a breathing effort, i can only deduct the sensors on the machine are better and less overused as the ones in the sleep lab, I doubt the sleep lab follows the proper cleaning and maintenance procedure for all those squishy sensors.

Normally as sleeprider pointed out, low constant pressure is the way to limit Centrals. Which is why I also said that you try my suggestion only after trying his.

The reason I suggested this 'dangerous' strategy is because you mentioned 2 very important things: 
- if you take xanax the problem goes away
- centrals happen only while falling asleep

that is exactly the same problem as mine, where a doze of clonazepam, doxepin or zolpidem causes a significant reduction of CA's during sleep onset. 

Xanax, clonazepam, doxepin are CNS depressants, so if your(or mine) CA's were caused by a low breathing effort, all of the pills would only exaggerate Centrals and not solve them.
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#8
RE: RELENTLESS sleep-transition central apneas
Sorry Crowter, missed your personal experience. The good thing about settings is they can be turned back if something does not work. It may be worth a try. Idlewre, EERS is nothing more than adding some rebeathing space. Without using a CPAP machine, using a short lenghh of tube on a CPAP mask would do the same thing. Without CPAP pressure the mask and a small tube would still contain expired air that you would re-breathe. With CPAP pressure on, this is all flushed through the vent.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files

How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: RELENTLESS sleep-transition central apneas
I'm currently waiting on insurance authorization for an in-lab sleep study/titration on the way to getting an ASV. Since my centrals occur mostly at onset (and are relentless unless I take medication, which greatly helps, so I often do), my total centrals per hour is diluted by the remainder of sleep in which they do not occur. So I do not have 5+ centrals per hour by this blunt metric. The doctor documented that I had more centrals than obstructives and hopefully that is enough, but after reading the wiki at http://www.apneaboard.com/wiki/index.php...P_Machines I had the following (perhaps dumb) question:

Couldn't one optimize therapy, sleep normally, and spend an hour (or whatever) in bed -- awake -- and periodically hold one's breath for 10+ seconds, in order to get one's numbers up to qualify? The machine doesn't know if one is awake or not, correct? The doctor likely isn't going to drill down and figure out what one is doing (and if he's on your side, that doesn't matter anyway). I think this would be a much better approach than suffering needlessly with sub-optimal therapy. Just curious, as that is what I am planning to do if necessary.


Second question: I overheard the doc talking to the sleep tech and it seems I would be titrated on a Respironics ASV. Does that mean that's the machine I'll have to use at home, or can I request a ResMed?
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#10
RE: RELENTLESS sleep-transition central apneas
Hi idlewire,
Do you listen to your breath as you're falling asleep?
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