A little history, for those who have patience. Starting about 4 months ago, once or twice a week when going to sleep, I would get a jolt of adrenaline right as I was drifting off to sleep. After a few of these in a row, I would get up for a while, and then try sleeping again later and was usually successful. I believed at the time that these were “hypnic jerks” (even though I wasn’t jerking) or just anxiety related to “letting go” into sleep.
About a month and a half ago, this issue began happening almost every day, and repeatedly, such that I was unable to sleep at all. I had many days where I could not sleep for 30-40 hours because every time I would drift off, these jolts would shock me awake. I had my wife observe me and she heard no snoring nor any effort to breathe. I however had no awareness of holding my breath when I would be jolted awake.
I began to suspect sleep transition apnea and started using a pulse oximeter. Sure enough, every time I would subjectively experience a jolt, my SPO2 would dip, often into the 80s (the lowest number I ever saw was 80), and then take some time to go back up to around 95. This was happening repeatedly.
I did not have a CPAP machine at this time and went to see a sleep doctor. I did an at-home sleep test. Ironically the first night was a night where this did not happen, and while it showed a high level of obstructive apnea, did not show many centrals at all, at least until the last hour of sleep when I turned on my back and slept lightly. The second day, though, was typical. I did not sleep at all. I wrote down the timestamps of each of these “jolts” and sure enough they correlated with a central apnea and oxygen dropping into the low 80s and no breathing effort.
The doctor prescribed me a BiPap machine (AirCurve 10 VAuto) and I was told I would have to “fail” bi-pap and then do an in-lab study in order to qualify for an ASV machine :/ The doctor made no effort to address what might be causing these things, even though he is a neurologist. He is impossible to reach with questions but I should be seeing him in 10 days or so. I have since gotten an Echocardiogram and a Pulmonary function test, both normal. I believe I should push for an MRI when I see him.
There was a 2-week period towards the end of April where I was basically staying awake 30-40 hours and then sleeping 6-12 hours, and this was my life. These jolts seem to get worse with increasing exhaustion. They also seem worse when I have exercised (moderate cardio) even though it is early in the day. Sleep deprivation the previous day makes them worse. I do not know what changes when I am finally able to go to sleep. Why was I able to “push through” them at hour 40 but not hour 39, for example? Who knows.
I was, not to use the word too lightly, traumatized by this. I started experimenting with medication. I settled on xanax because it would calm and then sedate me without making me feel too “weak”. Now if I take 0.25-0.5mg and wait for it to kick in before going to bed, 90% of the time I fall asleep just fine. This jives with what I’ve read about these apneas, in that the arousal itself is what kicks off the next cycle of them, and if you can get past them without being aroused, you’ll have less of them.
I only began using my machine a few days ago and don’t have much consistent data (since I’ve been fiddling with the settings), but I already see evidence of this. If I take 0.25mg and lay in bed right away, I can get 30 minutes of central apneas jolting me awake until I fall sleep. If I take 0.5mg and instead wait for it to kick in, there are 5 minutes of centrals. So it’s not like the medication is allowing me to “sleep through” the centrals, it is actually “fixing” them. However I feel like something is getting messed up. My normal amount of “fully rested” sleep is 7 hours, but when taking medication, I usually wake up after 6 hours and cannot go back to sleep. And I am feeling foggy and a little off. From what I’ve read, xanax has one of the shorter half-lives of medications I could take, so I don’t know if there’s a better choice.
But every night I try to sleep without taking anything. It takes me about 30 minutes to drift off and then I try to tolerate these arousals for 15 minutes before giving up. It is best not to let them go on too long because from experience the adrenaline that builds up could subvert even using medication. Then I try as little as 0.25mg of Xanax, which takes about an hour to see if it’s enough. If it’s not, I’ll take another 0.25mg and that usually does it. So basically I’m averaging about needing 2 hours to get to sleep.
Although my machine is not an ASV, I was hoping it could help. I’ve tried different things. I read a paper where plain old CPAP was better than BiPap for centrals, so I tried it in CPAP mode. Didn’t work. I read here somewhere that raising the Trigger to Very High might help, but it didn’t and made me feel weird (like it was forcing a breath too quickly and at the wrong time). Just want to emphasize that these are not treatment-induced, as I’ve only used my machine for a few days.
I’ll attach a snippet from Sleepyhead. This is me trying to sleep. Here’s 18 CAs in a half-hour. I subjectively “jolted” probably about 8-10 times during this period. I want to clarify that I am asleep when I am jolted, and I’m laying perfectly still. And again, the only reason I finally fell asleep after a half-hour was because I took 0.25mg of xanax about 15 minutes before this session. If I did not take it, this would continue indefinitely. While I did not jolt awake from each and every one of these, I did jolt at least 8 times. The period I have marked as "awake" are just to say that I wasn't sleeping in those longer sections between, and not to say that I only awakened twice.
I also want to stress that so far I have not had any centrals after this initial onset period. I suppose that’s a good thing?
Bless you if you’ve read all of this. I guess my questions are:
1. Any idea why this is happening to me now? There was an escalation of intensity over the last 4 months. Besides heart, lungs, brain, is there anything else I should get checked?
2. Is the xanax working because it’s raising my arousal threshold, or because it’s getting me to stable sleep more quickly? Both? Is there a better medication?
3. Does the SleepyHead data give any further information about this? It’s not CSR I don’t think is it?
4. Since this is a delicate stage of entering sleep, do you think an ASV “forcing a breath” during this period is going to awaken me anyway and that I’ll still have the same problem?
5. Assuming no underlying cause is found, is there anything else I could try to fix this, whether it be machine settings, or something unique?
Thank you again for any insight or help (or just plain old commiseration
This board is a great resource.
