ohwhatanight,
I bid you a sad welcome to the CPAP&Insomnia club. And hope your time in it is short.
As pugsy mentioned, I had some very serious problems with insomnia when I was first starting out, and have written at length about it. Pugsy has already provided the link to my blog. (Thanks Pugsy!)
Several things in your posts jump out at me:
ohwhatanight wrote: Last night, I tossed and turned all night and don't think I got much actual sleep at all.
and
I take Ambien CR 12.5 but am still awake most of the night. Out of the 5 hours in bed last night, I think I only slept about 1 - 1.5 hours.
and
I do have chronic insomnia. It's been a problem most of my life
and
So, does it sound to you guys that my problem isn't just apnea? Or is this typical with newbies and it gets better over time?
From the overall tenor of your posts, it sounds as though you've had sleeping problems for much of your adult life and your insomnia clearly pre-dates starting CPAP.
As frustrating as it is to hear this: You have to tame that insomnia monster of yours BEFORE the CPAP stands a chance of making a difference in how you feel during the daytime. And you have to tame the beast WHILE also adjusting to CPAP therapy at the same time. In other words, you have to get to where you are
sleeping with machine rather than lying awake and tossing and turning with the machine on your nose BEFORE the CPAP stands a chance of making a difference in how you feel during the daytime. The CPAP will manage the OSA by preventing the vast majority of respiratory events from happening, but the CPAP will not magically fix other sleep issues.
And with your long history of insomnia, you are likely to have some serious insomnia-related adjustment issues when learning to sleep with the CPAP.
But the good news is that
with some hard work on your part it will get better. Not as soon as you would like it to, but it will eventually get better. Once you manage to re-teach your body and mind how to
sleep when you are in bed, then
sleeping with the mask will be easier and
CPAP therapy will then stand a chance of giving you the energy and alertness you hope it can provide to you. More about this later---after we do some analysis of what you say in the rest of your post.
Sleep study data and questions about that data
First I'm a bit confused about the number of respiratory events you had during your sleep study. First you write:
Hi, just finished my 4th night with CPAP. Before, my AHI was 8.7 - ...
and then you write
On my sleep study, I had 241 arousals in 194 minutes. (74.5/hr) 130 of those were non-respiratory.
This seems to indicate that you had 241-130=111
respiratory related arousals, presumably from apneas and hypopneas, in 194 minutes of sleep. That would lead to an AHI (or at least an RDI) in the neighborhood of
(AHI or RDI) = (111 events)/(194 minutes of sleep) = (111 events)/(3.23 hours of sleep) = 34.3
So first of all, can you clarify for us what your
diagnostic AHI is and the number and type of events it was based on? And if your sleep study lists both an AHI and an RDI, can you give us
both figures? Thanks.
Regardless of what your diagnostic AHI or RDI was on the test, it is extremely important for you to get the doc to also seriously consider the 130 NON-respiratory arousals as well as the 111 respiratory ones. (At least I'm assuming that the remaining 111 were all labeled as respiratory arousals.) Because with 130 non-respiratory arousals in 3.23 hours of sleep, it seems that eliminating every single respiratory arousal is still going to leave you with severely fragmented sleep.
Questions:
Are the 130 non-respiratory arousals all simply labeled as "spontaneous"?
Does the lab attempt to measure respiratory effort related arousals (RERAs)? If not, then it may be worth asking the doc if some or all of those arousals might be RERAs, which would indicate that you may be at the border between UARS (where the problem is mainly RERAs) and OSA (where the problem is mainly OAs and Hs). Treatment for both, alas, is CPAP.
Any mention of periodic limb movements on the sleep study? PLMs can also lead to arousals. These arousals are usually scored separately and they ARE usually scored as PLM-related arousals instead of spontaneous arousals. Sometimes an excessive number of PLMs will resolve itself as the CPAP manages to bring the respiratory related arousals under control. But sometimes an excessive number of PLMs is part of a separate sleep disorder named (surprise, surprise)
Periodic Limb Movement Disorder or PLMD for short. PLMD can occur with or without OSA being present. It can be treated through certain prescription drugs. If there are large numbers of PLM-arousals on the sleep study, this is something to talk to the doc about.
Something that sounds similar to PLMD on the surface is
Restless Leg Syndrome. If you feel as though your legs get antsy and you have almost uncontrollable urges to move them around when you are lying in bed trying to get to sleep, you might want to ask you doc if you've to RLS.
I only got below stage N2 sleep for 5 minutes of the whole night. I had a sleep efficiency of 53% on a night I was utterly exhausted and could barely stay awake in the chair while they hooked me up. I took 3 hours to reach REM even though I only stayed there for a few seconds.
Clearly your sleep architecture was horribly messed up on the night of the study. Lots of folks have a rough night in the lab, however. So the relevant question is:
Just how much worse was this night (subjectively) than your normal sleep at home?
The usual interpretation of data like yours is something along the lines of: Even though the night in the lab was a rough night, you do have a serious problem with repeated arousals, many of which are respiratory related, on a nightly basis every night. And you likely have severe problems on a regular basis getting into both REM and Stage 3 (deep NREM) sleep. And you probably also have rather low sleep efficiency at home on a regular a basis as well, although the lab's 53% is likely much worse than normal. And what's leading to the daytime fatigue you experience on a daily basis is a combination of the following things:
- Way too many respiratory arousals (Fix = CPAP)
- Way too many other arousals (Fix = ??? since it depends on what's causing them)
- Way too little total sleep time on a regular basis (Current fix = the Ambien CR, but it doesn't seem to be working all that well right now. More on this later.)
- Way too little REM and way too little Stage 3 sleep. (Fix = Fix items 1-3 and this should, in time, resolve itself)
And where you're at right now is that the CPAP seems to be doing an excellent job in addressing item #1, but item #3 is known to still be a problem and that means that items #2 and #4 are likely still issues in obtaining a good night's sleep.
Important questions about your insomnia
How long have you been taking the Ambien CR? How long has it been ineffective? It's just my opinion, and I'm NOT a doctor, just a patient, but: It seems silly at best and counterproductive at worst to continue taking medication that is clearly NOT helping the problem. Ask the doc about discontinuing the Ambien.
What other things have you tried to do for the insomnia through the years and how effective have they been? You say, " I am careful to have good 'sleep hygiene' as much as is practical." Please be more specific. What parts of good sleep hygiene do you practice? Which parts do you struggle with or ignore? (For me, the part that I struggle with is "maintain a constant WAKE UP time seven days a week". When that's in place, I am usually in much, much better control of my insomnia than when I allow myself to sleep in on days off.)
What kinds of things are known to make your insomnia worse? And I'm really looking for things beyond the obvious "lots of stress" kind of response. Is it easier or harder to sleep when the room is cold for example? Do weather changes affect your insomnia? Do you have issues like chronic headaches or joint pain that aggravate the insomnia?
My advice
You write:
Any words of advice or encouragement? I see my sleep doctor tomorrow - any questions I should ask? Do sleep specialist only deal with the breathing issues? Is she just going to tell me my AHI is great and send me on my way with no other help?
If you are NOT proactive, then there's a high probability that the doc will indeed say "your AHI is great" and send you on your way.
BUT---sleep docs do deal with
all kinds of sleep related issues, including both insomnia and sleep disordered breathing. It's just that once you've been diagnosed with OSA, there's a tendency to blame everything sleep related on the OSA and not see the patient as a whole person with
multiple sleep related problems. And it's up to you to insist on getting advice and treatment for
all the issues and not just the OSA.
So, in my humble opinion as a patient who's been there and done that, I think you need to talk at length with your sleep doctor about the combination of CPAP adjustment AND insomina. And I think you need to talk at length to the doc about the lack of effectiveness of the Ambien CR 12.5 since you write that you are "still awake most of the night" even after taking the Ambien.
Regardless of how long you've been taking the Ambien, it is clearly NOT working for you if you can lie in bed for 5 hours and feel as though you only got about 1 to 1.5 hours of sleep. Clearly, you need another approach to dealing with the insomnia than Ambien. And it may help to try to deal with the CPAP&Insomnia issues using a combination approach of both cognitive behavior therapy and a switch in sleep medication rather than just a change in sleep medication. Because ultimately what it sounds like is that you need to teach your body how to go to sleep and then stay asleep once you are in bed. And because of that, I think that simply switching from Ambien to a different sleep medication without some CBT may not be as effective as a combined approach: You need the CBT to help you learn how your current sleep habits are adversely affecting both your insomina and your ability to adjust to sleeping with CPAP and how to change those habits so that you teach your body to sleep more soundly at night.
Things you might want to try or ask the doc about:
1) Keeping a sleep journal for a couple of weeks. A simple journal format can be found
here. It's important to realize that "time to sleep", "number of wakes", and "total time asleep" should be
estimates based on what you think is going on rather than based on watching the clock all night or making notes in the middle of the night. The notes don't need to be elaborate, but if specific CPAP related things cause problems getting to sleep or wake you up, put them down in writing. (For example, "Woke up twice with leaks and once with a dry mouth" is plenty detailed enough.)
2) Talk to the doc about a common tendency amongst insomniacs: Most insomniacs over estimate the time they are awake during the night and under estimate the amount of time they are asleep. Sometimes the simple knowledge that you are sleeping more than you think you are helps you to relax enough to get over the hump.
3) Talk to the doc about how to distinguish between the feeling of
being sleepy and the feeling of
being exhausted. The two are NOT the same. And many insomniacs mistake being exhausted with feeling sleepy. And it can be tough to fall asleep if you are
exhausted but not
sleepy. (Think about the cranky toddler who is worn out but way too keyed up to actually take a nap to recharge the batteries.) Ask the doc for tips on how to help your body
get sleepy before you become over tired and exhausted.
3) You write: "I am careful to have good 'sleep hygiene' as much as is practical." Read through a current
list of guidelines for good sleep hygiene. Carefully and honestly consider your own behavior patterns that affect your sleep. Discuss with the doc which aspects of sleep hygiene are most important and which need the most work on your part. Specifically ask for advice on which parts of sleep hygiene are most critical for you to establish. In particular, ask what you should do when you find yourself lying in bed AWAKE for what seems like hours on end. My guess is that you'll be told to get out of bed, go do something else that is RELAXING for a few minutes in a room other than your bedroom, and then go back to bed only when you are both
sleepy and
relaxed enough to mask up again. It's hard to force yourself to do this, but it's important. You've inadvertently taught your body that it is OK to be in bed and be WIDE AWAKE. You have to "unteach" your body that and reteach it "time in bed = time to sleep" and at the same time you have to teach it "time to sleep = time to mask up."
4) Make sure that you schedule a follow-up appointment in a month or two in order to talk about BOTH the insomnia and the CPAP adjustment. If things deteriorate before the next followup, CALL the doc's office. They won't treat your issues as serious if you don't treat them as serious.
5) You write: "I don't drink or smoke, but I also know I don't get enough exercise. It's hard to find the energy when I am so exhausted all the time." Daytime exhaustion can be caused by
many medical problems, including both untreated OSA and insomnia. So the tendency is going to be for everybody to just assume that your problems are related to the OSA and insomnia. But---schedule an appointment with your PCP as well. Talk about OTHER potential causes of extreme daytime exhaustion. Request blood tests for
all the following: A full thyroid panel; a CBC with differential and platelet count; vitamin D level; iron, folate, B12 levels; magnesium level; and diabetes test. This will either eliminate or uncover other potential reasons for your current exhaustion. If anything abnormal pops up in the blood work, then there's another underlying medical condition to treat. And you'll be one step closer to getting the daytime energy you so crave.
6) You write: "I don't drink or smoke, but I also know I don't get enough exercise. It's hard to find the energy when I am so exhausted all the time." As for the exercise: Start with baby steps. Take the stairs instead of the elevator if you are only going up one or two flights of steps. Park on the far side of the parking lot instead of that spot next to the door when you go to work or go to the store. Try to get at least a 20 or 30 minute walk outside every day. If you don't feel like you can walk very far or very fast, don't beat yourself up about it, but get at least a short walk in even when you don't feel like it. If nothing else, try to take a stroll around the block after breakfast or supper every day.
7) Buy yourself a copy of
Sound Sleep, Sound Mind, by Dr. Barry Krakow. Lots and lots of
practical advice on how to deal with chronic insomnia without medication. And he's also got some really useful information on the connections between OSA and insomnia and bad sleep. And a nice section on just how CPAP/BiPAP is supposed to work. Another useful book is
Sleep Interrupted, by Dr. Stephen Y. Park, which is an excellent layman's introduction to just what OSA does to our sleep cycles.
Best of luck as you start out on this crazy adventure.