Belsomra (suvorexant) trial---UPDATE at end of Page 1

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Belsomra (suvorexant) trial---UPDATE at end of Page 1

Post by robysue » Tue Apr 14, 2015 8:40 am

I posted an update on my on-going Second War on Insomnia at viewtopic/t105101/Update-on-the-latest- ... omnia.html.

I've decided to post notes about the Belsomra (suvorexant) trial under a new thread with the name of the drug in its title to make it easier for future forum members to find using the search tools.

Night 1
The detailed instructions for Belsomra (suvorexant) say to take it about 30 minutes before going to bed. So I did that last night: Took the Belsomra about 30 minutes before I went to bed at around 1:45ish. And then didn't fall asleep right away because I wasn't particularly sleepy when I actually climbed in bed. I had put a timer on when I took the Belsomra for fear that I would get wrapped up in something, and I did need that timer to remind me to GO TO BED, so I'd gotten too wrapped up in the reading I was doing last night before bed. The reading was NOT on the computer, but it was something that was not "boring". So I need to work on choice of reading material. I also think that waiting the full 30 minutes may be a bit too long for me since I did (briefly) get sleepy about 10-15 minutes after taking the Belsomra. I also know I need to be much more draconian in saying, "Time to shut the computer down" at night----I didn't do that until about 12:55 last night.

But even though I didn't immediately fall asleep, the BiPap didn't bother me too much. Although I did get uncomfortable when the PR BiPAP Auto started its first "Hunt and peck" pressure increase for the night, and I turned Kaa OFF and back ON at that point, which was about 10 minutes after I first turned the machine on. And while I didn't fall asleep immediately after getting into bed, it didn't take me an exceptionally long to fall asleep, even with that early OFF/ON cycle for the machine. Subjectively I'd say it took a total of around 25-30 minutes to fall asleep. The SleepyHead data indicates that I was definitely sound asleep within 20-25 minutes of first turning Kaa on and about about 10-15 minutes after turning Kaa on for the second time at the beginning of the night. I felt a bit weird during this time, but the weirdness wasn't a bad kind of weirdness per se. Rather it's like I could feel the conscious (wake) side of my brain fighting back against the Belsomra by doing its darndest to keep thinking. There were some pretty strange daydream-type thoughts going through my mind. And my body felt very relaxed---spookily relaxed in fact---in a way that Ambien does NOT do for me.

Woke up this morning at around 8:45 this morning. Felt pretty decent and made the conscious decision to NOT repeat yesterday morning's mistake (written about in this thread: viewtopic/t105102/Sometimes-its-just-no ... sleep.html) I also had a really bad taste in my mouth when I woke up. Don't know if that's from the Belsomra or from allergies causing me to sleep with my mouth slighty open. (The leak line is pretty normal, but my tongue does a pretty good job of staying up on the top of my mouth even when my mouth opens up.) I was still very sleepy when I out of bed and I was a bit uncoordinated when walking down the stairs, but nothing alarming. Hubby had my first cup of coffee ready for me, and I perked up pretty well over breakfast and decided to get on cpaptalk. I'm not feeling particulary sleepy right now, but I'm also aware that I'm still waking up.

And what happened between falling asleep and waking up?

The data indicates that I clearly woke up 4 times, which is fewer than my worst nights on Ambien, but about the same as my best nights on Ambien; I can clearly remember 1 wake and I sort of remember 1-2 other wake(s). (I normally remember 2-3 of my far more numerous wakes.) At the first wake I was uncomfortable enough with Kaa to get up and go to the bathroom; the other wake(s) I remember are only vaguely remembered, and I can't pin point which ones they are.

The really good news is that I had a PAP session that lasted 2:27 in the middle of the night! This was the second session for the night, and it's somewhat unusal for my second session to be the longest of the night. The last time I had a session that was over 2 hours long was a week ago on April 6; that one lasted 2:10.

And last night I had two other single sessions that were pretty long for me as well: The first session after I got to sleep lasted 1:12, the third session for the night lasted 1:34. After that third session I had a 27 minute session followed by a 54 minute session separated by a very short wake.

The AHI for the night is 1.60. There were 4 Hs and 7 OAs scored during the night, with 4 of the OAs occuring about 10 minutes before I turned the machine OFF and back ON at around 5:46 this morning. Don't know what happened here. Maybe REM? Maybe some post arousal SWJ since there's a big breath right before the first apnea is scored? At any rate, it's not enough to worry about. Here's a picture of that cluster close up:

Image

Overall? I think it last night is a promising beginning. We shall see what happens as my trial continues.

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Last edited by robysue on Mon Apr 27, 2015 8:33 am, edited 1 time in total.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by herefishy » Tue Apr 14, 2015 9:17 am

I'd like to follow your thread, but wonder if you could clarify a couple of things - maybe if I go back far enough I will find the answers, but it might be a good thing for others to keep it all together?
What is Kaa?
What is SJW?
I guess you have tried staying awake till you're really sleepy and then trying to go to bed/sleep earlier? I'm not really an insomniac so don''t know the trials of going to sleep when you are not exhausted, but my grandma always said the best sleep is the hours before midnight, and I get up earlier than you do. Not to be nosy, just, well, nosy.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by chunkyfrog » Tue Apr 14, 2015 9:25 am

Kaa is the name of her cpap machine, cleverly named after Kipling's snake in The Jungle Book.
SWJ refers to sleep/wake junk, which appears to be irregular breathing/events, which don't really count,
since you are not fully asleep.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Tue Apr 14, 2015 10:23 am

herefishy wrote:I'd like to follow your thread, but wonder if you could clarify a couple of things - maybe if I go back far enough I will find the answers, but it might be a good thing for others to keep it all together?
What is Kaa?
What is SJW?
As the all-knowing Froggie says: Kaa is the name of my machine and SWJ stands for Sleep-Wake-Junk. The kind of stuff you can see when you're not really asleep, but your not really awake.

As for Kaa: Back when I was a newbie dying for a good night's sleep, one night this part of Disney's The Jungle Book popped into my head: Kaa's Trust in Me song. Hubby was trying to get me to relax about the whole CPAP thing at the time (he was not yet a PAPer), and when I told him about the song and we got very silly that night. The critical lines from the song are:
  • Trust in me, just in me
    Shut your eyes and trust in me
    You can sleep safe and sound
    Knowing I am around

    Slip into silent slumber
    Sail on a silver mist
    Slowly and surely your senses
    Will cease to resist

    Trust in me, just in me
    Shut your eyes and trust in me
And since the hose in its hose cozy resembled a large, stuff toy snake that I was hugging each night attempting to get to sleep, the machine immediately got named Kaa.
I guess you have tried staying awake till you're really sleepy and then trying to go to bed/sleep earlier? I'm not really an insomniac so don''t know the trials of going to sleep when you are not exhausted, but my grandma always said the best sleep is the hours before midnight, and I get up earlier than you do. Not to be nosy, just, well, nosy.
My trials and tribulations with fighting the CPAP-induced Insomnia Monster were well documented back in 2010-2011 when I was a newbie. I'd always had a bit of an off and on problem with minor insomnia, going all the way back to when I was a kid. But tightening up on the sleep hygiene had always been enough to bring it under control---until I started PAPing.

And yes, the idea of staying awake until your really sleepy is a standard part of sleep hygiene. And it's probably the number one weapon in my large arsenal for fighting my insomnia. Prior to CPAP, that was usually all I needed to tame the Insomnia Monster enough to shove him back in his cage where he belongs. But at this point? Staying awake until I'm really sleepy results in my getting to bed after 3:00 AM night after night after night---even when I force myself to get up before 8:00 or 9:00.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by herefishy » Tue Apr 14, 2015 10:30 am

Thanks for the clarification - I can't help for sure, but do sympathize. It's not for everybody, but I say my prayers in the middle of the night when I'm having trouble going back to sleep, and if that's not enough, I just count.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by Sir NoddinOff » Tue Apr 14, 2015 11:39 am

Did your insurance pay for the Belsomra or did you have to dig into your own pocket Wonder how one would take it for sleep maintenance insomnia... later in the night

As a side note: I heard that the FDA dumbed down the level of the drug in the bloodstream so much for acceptance in the USA market that it's almost bordering on placebo effect/quality. The manufacturers were of course furious but had no choice.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Tue Apr 14, 2015 1:05 pm

Sir NoddinOff wrote:Did your insurance pay for the Belsomra or did you have to dig into your own pocket
Right now I'm on a ten day "free trial". However, well before getting the script I contacted my insurance. They said coverage for Belsomra would require "pre-approval". I contacted my sleep doc, who filed the pre-approval paper work. The pre-approval was granted about a week or so ago, and the doc sent the script to the pharmacy by snail mail. It took 3 days for the script to make it from Orchard Park (south suburb of Buffalo) to Kenmore (north suburb of Buffalo), and pharmacy had to order it.

If/when I get my first 30-day script, the insurance will pay for it, but I'll have a whopping $60 copay. The plan right now is for me to do the full 10-day trial and before that trial is up, to let the doc know if I want to continue taking it. If so, he'll send another script over to the pharmacy.
Wonder how one would take it for sleep maintenance insomnia... later in the night
According to http://www.drugs.com/pro/belsomra.html, the peak concentration for Belsomra is reached about 2 hours after taking it on an empty stomach. Taking Belsomra with food (particularly a high fat meal) delays the peak concentration for up to 1.5 additional hours. The half-life is about 12 hours, and you apparently get to a steady-state concentration in about 3 days of taking the drug consistently. Because of the long half-life, it's not clear whether you need to try to do anything different to treat sleep maintenance insomnia with Belsomra. I suppose if getting to sleep were not the issue, you could take it with some (high fat) food and hope the delay in max concentration corresponds to the time of the night you most need the help in staying asleep.

To put those numbers in perspective: According to http://www.drugs.com/pro/ambien.html, Ambien (regular release, not the CR type) reaches a peak concentration in about 1.6 hours and has a half life of roughly 2.5 hours. Ambien's short half-life is part of why it's not particularly effective for a lot of people's sleep maintenance insomnia. And that's why Intermezzo (which contains 1.75 mg and 3.5mg doses of Ambien) is designed to be taken by people with sleep maintenance issues in the middle of the night when they wake up and have problems getting back to sleep. (They're also only supposed to take Intermezzo ONCE per night and only if they have at least 4 more hours before their normal wake up time.)

My own experience is anecdotal evidence of how Ambien's short half-life makes it problematic if the problem is sleep maintenance: I have no trouble getting to sleep on Ambien. And I sleep pretty well---for the first 2-3 hours. During those first 2-3 hours, I typically have one wake---usually around 90 minutes into the night, and most likely right after I finish my first REM cycle. I turn Kaa OFF and back ON and then I immediately fall back asleep and I often get another 1 to 1.5 hour session before the next wake. But after that second wake? It's back to waking up every 25-55 minutes enough to turn Kaa OFF/ON and who knows how many additional wakes/arousals until morning arrives. I'm just glad I don't actually remember all these wakes that are there in my data. Then I'd be exhausted rather than merely tired during the day.
As a side note: I heard that the FDA dumbed down the level of the drug in the bloodstream so much for acceptance in the USA market that it's almost bordering on placebo effect/quality. The manufacturers were of course furious but had no choice.
I've read about this on some of the insomnia boards that popped up in doing a google search for Belsomra. While there's a lot of concern that it may not be as effective at the approved 10-20mg doses than the 20-40mg doses in the trials, there's a lot of concern on the feds part about drug-induced daytime sleepiness being serious enough to affect driving the next day. For what it's worth, the 20mg size was approved, but fed guidelines strongly urge starting people on the 10mg dose (under most circumstances) and 5mg for a few groups of people. When I was talking to the nurse in the sleep doc's office she told me to start with the 10mg dose for 2-3 days, but if it wasn't working, to bump the dose up to 2 10mg tabs for the next couple of days and then let them know if the larger dose was more effective.

For what it's worth: I'm medication sensitive as a general rule and I'd been worried about being able to tolerate the 10mg dose. (It's available in a 5mg size, but the free trial is for 10mg.) And I was pretty loopy this morning for the first hour or so after I got up this morning.


And it's not just Belsomra the feds are worried about: They halved the FDA-recommended dosages for women taking Ambien from 10mg to 5mg back in 2013 and strongly suggested that men starting Ambien ought to be started out on the 5mg dose for the exact same reasons they refused to approve the larger doses of Belsomra.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by howkim » Tue Apr 14, 2015 4:41 pm

I'm really glad that Belsomra seems to be working for you. I used a coupon for a free 10 day trial. The first dose (on an empty stomach) caused SUCH nausea that I was very uncomfortable. I didn't even get sleepy for hours. My quality of sleep that night was non-existent. I tried again a week later, with food in my stomach. I had some stomach discomfort, but that was it. Didn't even get sleepy. I guess it's not working for me. ::sigh::

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Wed Apr 15, 2015 3:15 pm

Night 2

Night 2 presented some challenging circumstances under any circumstances. I've got a very late teaching schedule this semester: TR's my last class ends at 5:45 and on a good day, I get home by around 6:30. Yesterday was not a good day: I had to finish some things up AND I had a long telephone call with a colleague about some school related stuff and I didn't leave the office until around 7:00 or 7:30. (Can't remember just how late it was.) And I had to cook supper when I got home. So supper didn't get put on the table until after 8:00.

And after supper came finishing taxes. Ours. My cousin's. And our son's. Each with its own set of problems. To be fair, hubby does the grunt work on the taxes each year, but he always wants me to go over stuff before we submit, and there always is some unanticipated twist on how TurboTax decides to do things.

There were two complicating factors in our taxes: (1) Hubby accidentally entered son's tuition stuff twice in the interview process and, while we could tell something was fishy with the return, we didn't catch the actual error until we were able to see the actual appropriate IRS form and (2) because of some kind of NYS tax credit in 2013, not all of our 2013 NYS tax refund was taxable for the 2014 federal form. Hubby needed to figure out the discrepancy between the refund and what TurboTax was putting on the 1040 line for 2013 state tax refunds.

The cousin's taxes were complicated by multiple state returns (as in three different state returns), an early retirement distribution subject to additional tax penalties, unemployment benefits, and getting the calendar straight on when she did and did not have health insurance. And two of the state forms had to be snail mailed rather than submitted on-line. (Don't ask why.)

Son's taxes were complicated because Son is in Kazakhstan on a Fulbright award as an English Teaching Assistant. The Fulbright money is taxable as ordinary income, but there's no W2 and there's no withholding. And Son is still our dependent for 2014 because we were providing all of his support while he was in his final semester of college last spring and during the period between graduation and the beginning of the Fulbright. And Son did not file the estimated tax payments as we told him to do last fall. And Kazakhstan is 12 or 13 hours ahead of us in terms of time zone, so simply getting in touch with Son by Skype is not that easy. And Son's internet connection is not that great, so even when we do Skype, the line can be dropped. (Fortunately Son has the money in his account to pay his rather large tax bills, but getting that money in a place where we can make the payments to the IRS and to NYS has required a couple of different Skype calls.)

It also became clear by around 10:00pm that we also needed to make copies of a bunch of things---mainly forms for Cousin's snail-mail returns, but also our annual "file for an automatic extension because we know what the Schedule D is going to say, but we don't have time to get that form properly filled in to file on time." So I had to go back to the office because we own 3 or 4 NON-functioning printers (and they haven't functioned in years, but hubby won't throw them away.) By the time I get back, Hubby and Cousin are hacking away at her Federal and NYS taxes in TurboTax, with much gnashing of teeth. We finally manage to get Cousin's NYS returns finished at 1:25 AM. And I'd meant to take the Belsomra at 1:00 AM with the intention of being in bed by 1:30AM.

I was wired. And I also had a 9:00 AM dentist appointment this morning. So I needed to be up by 8:00. So I was double wired at 1:30 AM when I took the Belsomra. Then I brushed my teeth, did the neti pot thing, did a cryptogram puzzle in the newspaper, and played a game of solitare on the computer (which I really shouldn't have done, but I didn't want to overshoot the 2:00AM bedtime.) And I went to bed at 2:00AM, still feeling somewhat wired from all the chaos, but also feeling like the Belsomra was starting to kick in.

I feel asleep hard and quite quickly. Possibly within 5 minutes of hitting the sack and definitely within 10-15 minutes. And the first Kaa session lasted for a whopping 2:59. (I see a session that's 3 hours long maybe a couple of times a month; so a 2:59 session is really great for me.)

When I woke up after that 2:59 long session, however, I was feeling queasy. I went to the bathroom and came back to bed. And the queasiness grew after I laid back down in bed. And it took a long, long time to get back to sleep because I was feeling so sick to my stomach. Eventually I drifted off to sleep, but the rest of the night I kept waking up feeling really queasy at rather frequent intervals. And the aerophagia was growing as the night went on---most likely because every time I started to drift off, I'd catch myself snoring, but not in time to prevent Kaa from increasing my EPAP. By the time 8:00 AM rolled around I was more than willing to get up, just to get away from Kaa and to see if getting vertical would help the queasiness.

After a cup of coffee and some cereal the worst of the queasiness passed. I had Hubby drive me to the dentist since I'm still leary about how the Belsomra is affecting my alertness in the morning. The dentist visit went find and by the time I got home, I was feeling pretty good. The day at work has been hectic, but I've felt pretty good---in spite of all the queasiness last night and all the wakes I remember because of the queasiness. When your sleep is as bad as mine naturally is, getting close to 3 hours of reasonably high quality uninterrupted sleep seems to be enough to help me function ok during the daytime.

I still have an evening class to get through tonight; I won't get home tonight until after 9:00pm. We'll see how that class goes because I'm tired right now---as in physically worn out.

And at this point, I'm not at all sure what to make about all the queasiness last night. It could be a Belsomra side effect (I hope not), but then again, the queasiness felt a lot like a return of the queasiness that I had on Friday night through Monday evening when I had some kind of stomach problem that I could NOT blame on the Belsomra since I didn't yet have the Belsomra pills in my possession. So perhaps last night was the stomach bug raising its ugly head again. But perhaps it is a side effect of the Belsomra. Only time will tell I guess. Fortunately, the queasiness has not been very apparent since about 30 minutes after I got up. (But the aerophagia has been with me all day.)

Regardless of whether the queasiness is related to the Belsomra, I can say this about the Belsomra: Unlike when I take Ambien, I don't feel "hung over" all day (at least so far). When I take Ambien there's always a substantial risk that the whole next day I'll feel drowsy and not all there. With the Belsomra, I have some trouble waking up, but it seems to "wear off" within an hour or so of getting out of bed, and the rest of the day, I have not had the same "drowsy and not all there" feeling that I tend to have with even a 2.5mg dose of Ambien. But if I get as queasy every night as I got last night, then that will be a deal breaker. So based on how I felt yesterday and today during the daytime, I'm really hoping last night's queasiness was related to the stomach bug rather then the medication.

I'll post another update tomorrow.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Thu Apr 16, 2015 9:56 am

Night 3
The good news: No waking up feeling queasy and nauseated last night.

The less good news: Back to the old pattern of sleep. Hit the sack about 2:00am--- 30 minutes after taking the Belsomra. Woke up for good around 9:30AM. The data indicates there were a lot of places where I woke up enough to turn Kaa OFF and back ON; fortunately I don't remember most of them. (I do clearly remember 2-3 wakes, which is about normal for me.) Longest single session was around 90 minutes long, but there were a lot of 30-50 minute sessions last night. I certainly don't remember being that restless.

It still took a long time to properly wake up this morning, but now that I'm actually awake, the body is feeling more rested than when I use Ambien and there's much less of a day-long Ambien hangover.

We'll see how the energy level lasts during the day today.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by Krelvin » Thu Apr 16, 2015 11:39 am

Question: why do you need to turn you machine on and off during the night?
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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by Pugsy » Thu Apr 16, 2015 12:28 pm

Krelvin wrote:Question: why do you need to turn you machine on and off during the night?
It's just something she has done for a long time so that she can more accurately gauge the number of middle of the night wake ups. Quick off and back on so that it shows up on the therapy flow rate graphs as a small break.
I think for her now that it is a habit and often done without consciously thinking about it....hence the not remembering all of the off/on marks in the reports.
Gives her an idea as to overall sleep quality since her sleep in general is so fragile anyway and let's her have some sort of baseline as to compare good nights and bad nights to.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Thu Apr 16, 2015 1:08 pm

Pugsy wrote:
Krelvin wrote:Question: why do you need to turn you machine on and off during the night?
It's just something she has done for a long time so that she can more accurately gauge the number of middle of the night wake ups. Quick off and back on so that it shows up on the therapy flow rate graphs as a small break.
Actually I don't turn Kaa OFF and back ON to more accurately gauge the number of middle of the night wake ups.

Rather: I have always had serious problems with aerophagia even at very low pressures. And when I wake up the first thought that goes through my sleep addled brain is "Is the pressure at 8/6 and leading to potential aerophagia?" Turning the machine OFF and back ON resets the pressure back to my minimum pressures of 6/4 and even my unconscious brain knows this. Hence as soon as I wake up enough to know I'm awake, I automatically turn Kaa OFF and back ON so that I don't start worrying about the pressure being at 8/6. And "not worrying about the pressure" usually allows me to get back to sleep very quickly. And when I get back to sleep in less than 5 minutes, I don't remember the wake at all the following morning. (And that's typical: Most people only remember wakes that are at least 5 minutes in length.)
I think for her now that it is a habit and often done without consciously thinking about it....hence the not remembering all of the off/on marks in the reports.
It is definitely a habit and most of the time I do indeed do this without any thinking: Because the total time between "wake up and turn machine OFF and back ON to prevent worrying about the pressure leading to aerophagia" and "get back to sleep" is under 5 minutes, I don't remember most of the times this happens. Hence when I look at the data and see the wakes, I'm always a bit surprised.

But then I'm a weird insomniac: Most insomniacs over estimate the number of times they wake up during the night. I underestimate it. Most insomniacs under estimate the total amount of sleep they get in a given night. I over estimate it---as documented on all 5 of my in-lab sleep tests, the actigraph data from August 2013, and the Zeo data I had back when I could still get Zeo supplies.

The sleep doc's concern along with mine is this: Although my OSA is well controlled and I'm getting sufficient "time in bed" most nights, I am waking up feeling unrested and unrefreshed. I have some real issues with daytime fatigue and sleepiness that are not explained by other health problems. And although I only typically remember 2-3 wakes in a given night, the data suggests that I am waking up a lot more often. And that the time between the wakes is often only 20-50 minutes. In other words, the data suggests my overall sleep is quite fragile and that I am often not getting in enough full cycles of sleep between the numerous pesky wakes to actually wake up feeling rested and refreshed.

The goal I and my sleep doc share is pretty simple: We'd like to reduce the number of actual wakes down to something closer to the 2-3 wakes I remember each night. And we'd like to increase the amount of time between the wakes I don't remember from 20-50 minutes up to something closer to 90 minutes. In other words, I and my sleep doc will be thrilled if I ever get to the point where I'm waking up every 90 minutes or so just long enough to turn Kaa OFF and back ON. Brief post-REM wakes are pretty normal, and if I can ever reduce my wakes down to where those are only wakes I typically have, both I and my doc expect that I'll feel much more rested in the morning.
Gives her an idea as to overall sleep quality since her sleep in general is so fragile anyway and let's her have some sort of baseline as to compare good nights and bad nights to.
This is a consequence of the fact that I'm turning Kaa OFF and back ON out of a primal fear of aerophagia. But it's not the motivating reason that I keep turning Kaa OFF and back ON.

One thing I want to point out: I've been at this for a long time. If I were using the OFF/ON cycles to intentionally track down every wake I have during the night, I'd actually work on NOT doing it. Intentionally tracking the wakes has a way of perpetuating them: You wake up (a bit) and think to yourself, "I need to track this", and that makes you wake up more. Which in turn increases the restlessness. And once upon a time I think I was allowing myself to fall into that trap. I'd stare at the data carefully each morning trying to ascertain exactly when each woke occurred, how long it lasted, and whether I could tie it to any of the wakes I actually remembered during the night.

I don't do that so much any more. Sure, if I remember a bad restless period during the night, I'll try to correlate to which part of the data corresponds to it. But if I recall 2-3 short wakes, but no real restlessness, I typically assume the wakes are likely post-REM wakes and nothing to worry about. And when I look at the data, which is no longer right after I get up most mornings, I don't second guess why each and every wake occurred. These days I prefer to focus on the positive when I can find it: Anytime I see a session that lasted more than 90 minutes, that's a big PLUS since it likely indicates I got one full, uninterrupted sleep cycle. And the rare nights where I have three or four 90+minute long sessions are causes for celebration. Those are the days I feel at my best. And those are the kind of night I and my sleep doc want to see many more of.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Fri Apr 17, 2015 7:47 pm

Night 4

Last night I didn't get to bed on time. No good reason why. And several bad reasons why. Hubby was watching Marco Polo on Roku later than I wanted, and several scenes of the episode he had on freaked me out. I don't do well with a lot of visual TV violence shortly before bed. I've got to get far more draconian at telling hubby: NO, I can't watch this when it's after 11:00pm. And I had a hard time forcing myself to shut the computer down. I absolutely have to start enforcing some self discipline when it comes to late night web browsing, email reading, and playing solitare on the computer instead of doing a crossword on a real newspaper. And cousin came down to chat around 1:00AM. Sheesh.

The result? I suddenly realized it was already after 2:00AM. And I still needed to get ready for bed. I skipped the neti pot, which was a mistake, judging by the snores. I took the Belsomra and then went to the bathroom to brush my teeth. And I checked the water in Kaa and fiddled with the mask a bit before lying down and turning Kaa on.

I'm happy to report that I had no nausea or queasiness during the night. It's looking more like what happened on Night 2 was the result of a stomach bug rather than a Belsomra side affect.

Overall Night 4 was pretty good news in regards to my sleep continuity problems.

I got to sleep without any real problems and the first PAP session of the night lasted 1:08. Not sure that was long enough for a full sleep cycle or not, but it's also not a 20-30 minute session like I sometimes have at the beginning of the night. I did have a bit of trouble getting back to sleep and I vaguely recall this first wake. Once I did get back to sleep, I slept pretty well (except for some snoring) for not quite two hours (the session was 1:49). After a brief wake that I don't remember at all, the next Kaa session lasted for 2:30, which is really, really good for me. Here's what that whole session looks like in SleepyHead:

Image


The last hour of this 2:30 session is one of the prettiest hours of sleep I've seen in my data for a long time.
And if I zoom in on the breathing during that last event free hour of this session, we see some really nice, regular breathing typical of good sleep breathing:

Image


But the middle part of this long session has some weird clustering of events. I'm really not sure what's going on here. Here's what the cluster of events looks like closer up:
Image


The cluster starts about an hour after the beginning of the session and it lasts for about 26 minutes. The timing of this suggests a possible REM cycle. And there's some kind of arousal around 7:12 before those last to OAs are scored.

I remember waking up at the end of the long 2:30 long session; the wake was around 8:30 and I was NOT ready to get up. So I turned Kaa OFF and back ON and I drifted into a not very good sleep for about 25 minutes before the next time I turned Kaa OFF and back ON. I don't remember being restless for 25 minutes, and the machine says I was snoring, and I certainly don't remember "snoring while awake" like I sometimes do. Clearly the fact that Kaa increased the pressure to 8/6 somehow got through to my addled (half-awake?) brain and I woke up enough to turn Kaa OFF and ON again. I'm not sure I remember this wake, but I'm also not sure if I don't remember this wake. But after that last wake, I did fall back asleep for another 30 minutes before my Hubby started yelling up the stairs at me that it was time for me to get up and that he had made me some (decaf) coffee. And in my memory, it was his yelling, "I've got your coffee ready" that woke me up for good.

Like the other days so far, I had some real trouble fully waking up. And it again took me a full hour or so before I was awake enough to feel like I wasn't sleepy any more. The AHI = 2.42 is somewhat higher than it normally is, but then it's also allergy season and I forgot to do the neti pot. I had some hand and foot pain this morning, but it dissapated while I was eating breakfast.

After finally fully waking up, I had a pretty good day in terms of how I felt and in terms of energy levels. Not an excellent day, but a pretty good day. My allergies are pretty bad right now, which has made my eyes and sinuses hurt today. And the work day was a bit busy----no time for lunch unfortunately, which gave me a slight headache.

Again, one of the best things about the day is that once the Belsomra wore off about an hour after getting out of bed, I felt pretty alert and normal the rest of the day. And that's not been true when I take Ambien: The day after I take an Ambien I often feel "hung over" and not all there for most of the day. The Ambien hangover is not really excessive sleepiness, and it's definitely not excess fatigue. But it is a feeling of just not being fully awake and alert.

I emailed a brief update to my sleep doc today about the Belsomra trial. His nurse had said something about bumping the dose up from 10mg to 20mg if I thought it was not working, and I asked about that in the email. Right now the doc wants me to stick with the 10mg dose because of the problems I've had with morning tiredness and sleepiness on the Ambien. He'd like me to gather more data about just how I'm reacting to the Belsomra during the daytime before increasing the dosage. I'm inclined to agree with him. He also sent a 30 day script over to my pharmacy this afternoon. Hopefully that's enough lead time for them to order it and get it delivered to them before my 10-day trial supply runs out. The doc also pointed out that there's a Coupon on the Belsomra web site for reduced co-pays for a year. So I printed that out for when it's time to pick up the next script.

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Re: Belsomra (suvorexant) trial---reporting from the trenches

Post by robysue » Mon Apr 27, 2015 8:33 am

Nights 5-10
Been a while since I've updated this thread.

Nights 5-9 were pretty much the same: A few stretches of 2 hours of uninterrupted sleep, but mostly continuing to wake at intervals that may imply nothing more than post-REM wakes. And I didn't remember most of these presumed-to-be-post-REM wakes because they were very short: I woke up just enough to turn the machine off and back on and then got back to sleep. During the daytime, there seemed to be very little to none of the "I'm still sleepy" feeling that I get from even 2.5 mg of Ambien. Energy levels during the daytime were decent.

Night 10 was heaven sent: A three hour long chunk of uninterrupted sleep at the beginning of the night with only two events (both of which may be post mini-arousals which didn't fully wake me up) and two other sessions that appear to be long enough for a full sleep cycle. And an overall AHI = 0.62 thrown in as icing on the cake. There was one session that night that was only 33 minutes long, followed by a 7 minute long session. Usually when this happens, I have a sense of "restlessness" that also shows up in the flow rate as ragged breathing that is potentially SWJ breathing. But this time, the breathing in the 7 minute session looks to be pretty normal sleep breathing:
Image
It looks like I had some kind of (spontaneous) arousals at both ends of this session. At any rate, when I woke up on Saturday morning, I didn't remember any of this so it doesn't "count" as a major sleep interruption in my opinion. And Saturday I had a lot of energy. Spent the day doing some badly needed yard work that involved some real lifting and shoving dirt around. And had a great time doing it.

But that was the last Belsomra in the package. And even though my sleep doctor had said he would send a script for 30 Belsomras to the pharmacy earlier in the week, I had not gotten a phone call from the pharmacy all week long. I didn't think of following up until Friday evening, when I called the pharmacy and found out that they had not yet received a new script. Bummer. The pharmacist volunteered getting in touch with the doc and I also sent email to the doc through the patient portal that evening. But that means Saturday night and Sunday night were back to my old problems.

I meant to take an Ambien on both Saturday and Sunday nights, but managed to "forget". On Saturday night, the problem was I was NOT sleepy for the longest time. I finally wound up going to bed around 4:20AM. I slept "ok", but not great. The first three sessions that night lasted 42, 58, and 10 minutes respectively. So that first sleep cycle was pretty chopped up. After that the wakes seem to be post-REM based on the lengths of the sessions. Didn't feel anywhere near as energetic yesterday. And still had problems getting sleepy on time. When I went to bed last night around 3:00 I meant to take an Ambien, but I literally climbed in bed forgetting to take it and I didn't want to get back out of bed. The first two sessions lasted 1:11 and 1:15 respectively, which is pretty decent and I think those are probably long enough to be a full sleep cycle, or close to a full sleep cycle. There was one other session that was 1:23 in length. But there were also three sessions that lasted less than 30 minutes, including two in the hour before I got up for the day. And I'm tired this morning.

Overall Impressions for the whole 10 day trial
So at the end of the 10-day trial, here are my overall impressions about how Belsomra is working for me:

1) There's plenty of evidence that Belsomra is at almost as effective as the Ambien in terms of helping me get to sleep at the beginning of the night when I'm a bit wired and Kaa starts bothering me.

2) Belsomra does as good of a job as Ambien at keeping me asleep through full sleep cycles; and Belsomra may do a slightly better job of helping me get a few longer stretches of sleep between wakes where I'm aware enough of being awake to turn Kaa OFF and ON.

3) Belsomra doesn't eliminate all of the short, less than 60 minute long sessions during the night. It may, however, do a better job than Ambien of reducing the number of them. It may also do a slightly better job of helping me not remember the restlessness of multiple short sessions piled up together.

4) While it takes me a while to wake up in the morning, once I'm awake the daytime after effects of Belsomra seem to be significantly less than the after affects of the Ambien. I don't feel drugged out all day long on the Belsomra, and I do feel that way on Ambien. Ambien also tends to trigger real problems with constipation in me, but Belsomra does not. Between no constipation and less of a drugged out feeling, I feel more alert and more energetic when I take Belsomra than I do when I take Ambien.

5) Belsomra definitely does NOT weird me out when I first take it the way Sonata and Lunesta do. That's a good thing. Then again Ambien also does not weird me out when I first take it.

6) Belsomra may be a bit better than Ambien in term of helping me stabilize my bedtime.

Overall, I consider the Belsomra trial a success. Not a "bases-loaded home-run" success, but a good solid "double with an RBI thrown in" success. And I certainly hope the sleep doc sends another script for it over to the pharmacy today.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5