Ask MetaFilter questions tagged with CPAP

Mayo Clinic and Apnea

spicynuts — Mon, 28 Sep 2009 12:16:25 -0800

The Mayo Clinic and Central NS Sleep Apnea - has anyone had any experience there with any of the following: consultation, evaluation, treatment or just plain contact for informational purposes? After a long, long battle to convince doctors that obstructive sleep apnea is a wrong diagnosis, I've finally been diagnosed with Central Nervous System Sleep Apnea and had a change of machinery. However, I am still having difficulty with the CPAP (or whatever the specific version of CPAP for CNS Apnea is..) being an effective treatment. In talking with my therapist, she suggested that contacting the Mayo clinic for a more rigorous diagnosis and possible exploration of new/experimental treatments might be worthwhile. Has anyone been down a similar path? What's the best way to start? A detailed email to someone in the right department?

help me sleep... PLEASE.

isoman2kx — Tue, 28 Jul 2009 09:35:06 -0800

Please help me sleep. Please :( This is going to be VERY VERY VERY long because my sleeping problems have a 2-3 year history. Any replies I get beyond zero I will be very appreciative of.

I've posted questions/threads this in the past but the past has spanned a while hasn't it? As the months have progressed, each time I post this I'm increasingly frustrated and saddened that I will never have a normal sleeping life to get through college and get my degree. I started having sleeping problems when I started college. To this day, I cannot recall anything particularly horrific happening to me to traumatize my sleeping patterns. 4 years ago I switched from high school to college. That's what a good percentage of Americans do right and? Right.

I have a history of depression and a history of anxiety. Both I would say are not severe. The depression is moderate to slightly above moderate most of the time. I take 120 mg of Cymbalta for it and have done so for almost a year. I have anxiety, I used to take Xanax 3 times a day at .5 mg a clip and now I take it all at night to see if it helps me sleep any since I can cope with the anxiety in the day better now.

My depression/anxiety stems from lack of self-esteem and energy from a lack of sleep. So far it's all making sense right? Ok, let's keep going then.

I've always had a hard time winding down for sleep since I can remember and definitely before I started college. I'm sensitive to light before going to bed and I spend way too much time on the computer before bed (even though I've incorporated at least an hour to 2 hour cool down period before bed now after turning off the computer). I currently see an ENT doctor and a psychiatrist (and a psychologist for talk therapy sessions just to kinda vent really, I never have any big updates to give lol) . My ENT doctor is outstanding while I feel my psychiatrist is useless and I'm strictly on a seeing her every 2 month just because that's what you do I guess when you have all this shit going on. My psychologist/campus counselor is outstanding as well.

Roughly a year ago, I went in for a sleep study because as you'll see later on in this master thesis, I've tried every medication known to man for falling asleep and staying asleep. After an awful night in those horrendous laboratories they call sleep clinics, they said they had enough data despite my whopping 240 minutes of sleep. I was later diagnosed with sleep apnea and frequent arousals with my brain wave patterns. My options were CPAP, throat and uvula surgery (noooooooooo way. nooooooo way in hell), mandibular retainer, treating restless leg syndrome and jumping off a building. We tried a CPAP machine and I just got increasingly frustrating with the thing. At first the mask wasn't right, I got a new mask. Then I just detested all the maintenance you had to do to keep the piece of crap that didn't help me sleep all clean and functional. Later on, the sleep clinic and I tried to treat me for restless leg syndrome. Needless to say that didn't do a damn thing. I was on mirapex, although I don't remember the dosage. I just remember increasing it and then quitting the stuff. After I went back to them after all of that, I wrote them off as idiots and politely never scheduled another appointment with them again. I'm done with them. Best sleep clinic in Houston??? We fix the problems other clinics miss? Oh really???

So that led me to my ENT that I currently see. After a few months of trying nasal sprays (prescription), afrin, and useless saline rinses I decided to have sinus surgery on June 22, 2009. For the medical students out there... I had a balloon sinusplasty done combined with correcting a deviated septum (which doesn't cause problems in most peoples sleep) along with a right turbinate reduction. The surgery sucked balls but now I can breathe better, just no improvement in sleep. Hooray! :) The sinus surgery was my part one out of a two part plan for fixing my sleep. My ENT informed me that he could definitely get me breathing better but the surgery would not be primarily to fix my sleep. If it did so then that would be great, but if not then that was what we had understood going into the surgery so no big whoop. I secretly hoped it would though and had the surgery more so for that reason than fixing my day-time breathing. My second part would be using a mandibular retainer after my sinuses fully heal up. I think at this point, my ENT and I are "entertaining" the idea of when it's all healed I'll have great sleep. At this point, if I got a mandibular retainer it would be through a doctor that my ENT knows and not the useless sleep clinic that I previously went to. I don't even know what good that would do?

Now let us back track to what goes on once I manage to get relatively sleepy. I always eat before I go to bed because I've gotten so frustrated with every other method and medicine I've tried, so that's my first step. I then go to sleep and proceed to wake up anywhere from 3-4 times like god damn clockwork (for the past 4-5 years at least). I've consulted with other friends and they wake up too, but they fall asleep quickly. I usually eat before I go back to bed because in my mind I'm tiring my body out by using energy to digest food and thus it will help me get back to sleep. I know, but it's my theory, valid or not, lol. At this point when I post, I'm always asked well what do you think about when you wake up? Are you short of breath? What is your mood? How do you feel?

Well, I'm almost always irritated because I immediately think "great, it starts again. let's see how many times I wake up this night". Despite my severe sleep apnea diagnosis, I never wake up in a panic or short of breath. My mood of course is frustrated and irritated and I feel the same. Surprisingly, this is the point where I say there is nothing traumatic going on in my life that's causing me to wake up in the night like this. I've got the usual responsibilites such as being the man of the house since my dad passed away last year (again, sleep problems existed long before he passed away and I've discussed this with others at length), going to school trying to finish my degree through being tired as hell, helping my mom with daily house chores, running whatever errands I do, getting a good amount of exercise per week, getting together with friends, etc. It's not like I'm waking up every night 3-4 times because there's some lingering issue. If it's buried deep in my subconscious then that's where it must be and someone needs to Harry Potter my brain and extract whatever haunting fear or memory that is buried there with a magic wand because it sure as hell isn't anything out of the ordinary I can think of.

So now we're done with describing this. Have you fallen asleep yet? :). Within the last 3 months, we've replaced my bed and I have a brand new tempurpedic mattress and tempurpedic pillows - both of which I happen to like. However, the new bed and new pillows are not helping my waking up 3-4 times a night any. It's more comfortable to sleep on, but it's not helping the issue I bought it for.

Ok, aside from that paragraph I've stopped taking sleeping pills. They just don't work. Here is a list of what I have taken and I have been on each of these medications for at least 2 week periods (which in my mind is more than enough to see a difference, I've never believed that crap about give it more time...give it more time. 2 weeks is enough god damn time).

list (most are official sleeping pills, some are not):

Ambien
Ambien CR
Lunesta
Restoril
Rozerem
Trazodone
Seroquel

regular things I've tried:

all the sleep time teas in the world
valerian root capsules
different herbal cocktails (like those bottles that have valerian root, chamomile, etc in their capsules)
different indian teas.
hot baths for at least 30 mins, about an hour before I go to bed.
hot baths with epsom salt (yeah, it doesn't help sleep specifically, whatever right?)
hot baths with different "sleep" salts and other sleep mixtures.

what I haven't tried:

overdosing on drugs and getting permanent sleep. I'm kidding about this as I've entertained the idea, but you get the point of my situation.

After all of that and I really am sorry I had to put you through reading it, but there's just no way to sufficiently describe my situation. I wake up 4-5 days out of the week wanting to kill someone upon waking up or wanting to punch holes in my wall (which I haven't done yet).

What do you guys recommend? I am seriously convinced that certain pathways in my brain are screwed up and that I should almost see a neurologist to see what else could be going on with me. At this point, what would you do? I have tried so many things... so so many things and for what? What has it done for me besides nothing? Who should I take my problems to? Who should I see for this? What battery of tests can help me?

- Travis

Help me stay asleep!

um_maverick — Mon, 09 Feb 2009 08:29:25 -0800

I haven't slept through the night in at least 3 years - I need some help around sleep apnea, restless leg syndrome, and sleep studies. For as long as I can remember, I've generally woken up 4-6 times per night. As a result, I'm exhausted all the time - the final straw was when my sister, who has two toddlers, told me that the bags under my eyes are worse than hers....

I have fairly good sleep hygiene (I think), and it's gotten better lately - left the stressful consulting job and have a pretty standard 9-5 that I can leave behind when I leave the office. Very low stress, go to bed/wake up at the same time, no caffeine at all (though I sometimes break this when I need a kick to stay awake in the office), exercise 4 times a week, and I've lost 20 pounds since I left the old job - I'm now 5'11" and 170 lbs, and 29 years old.

I don't have problems falling asleep, but I do have problems *staying* asleep. When I wake up, I don't have problems breathing, but I usually roll over and go back to sleep. According to wifey, I don't snore unless I've had a few too many drinks, or am sick.

Now, finally, the question(s): I feel like a sleep study is going to be a self-fulfilling prophecy, in that I'm not going to be able to sleep because everybody's staring at me and I'm covered in electrodes. Is this true? Is there any middle step between reading-ask-mefi-and-getting-sleep-advice and the sleep study itself? Is there an alternative to CPAP if I do have sleep apnea? Many of the older posts say that the device can be hard to get used to, and the hissing can annoy significant others. I don't want to rely on meds to sleep, but I'm starting to run out of options.

I spent about 30 mins last night reading older posts about this, but couldn't come to a solid conclusion about the questions above - apologies if it's duplicative...might just be my sleepless-haze that made me miss it. Thanks in advance.

CPAP alarm?

Ery — Sun, 08 Feb 2009 07:39:02 -0800

Is there any way to set up an alarm that will go off if an electrical device is not in use? I need a non-usage alarm for my CPAP. I keep forgetting to put on my CPAP mask before I fall asleep, since it's too annoying to fall asleep with if I'm not already very sleepy, and sometimes I fall asleep suddenly. I wake up several hours later feeling dreadful since I have not been breathing enough, and feel bad all through the next day.

Unfortunately, I don't snore at all when suffering apnea, so we can't use that as a natural alarm for my spouse to wake me up. I'd like some sort of quiet alarm that will go off about an hour after a preset bedtime if I am not using the device.

I want to wake up rested!

Camofrog — Tue, 08 Jul 2008 16:05:53 -0800

Help me buy a CPAP machine. I have insurance, but I don't want them to get involved since they will want me to do a sleep study, which I did a couple of years ago with negative results. I think that was mostly because I barely slept. (Hospital bed with railings, wires all over my body, noisy nurses trundling past in the hall all night --- I don't know how they expect to get a good sample under those conditions...) For a few hundred bucks, I'll just spring for my own, thanks.

So, who out there has one? I am looking for very specific advice, down to specific models and websites where I can purchase one. Would this be something I could return if I didn't like?

Also, can someone explain what the nasal pillows are? Is there a general consensus on what percentage of people find relief using CPAPs? Any info at all would be appreciated.

Has anyone had success treating sleep apnea without a CPAP (or surgery)?

tastybrains — Sun, 06 Jul 2008 21:00:04 -0800

Has anyone successfully used non-surgical alternatives to CPAP therapy (oral appliances, special pillows, etc) for treatment of mild-to-moderate sleep apnea, or been able to stop CPAP therapy after losing weight? (Note: Surgery is not an option, I do not have severe apnea, and my doctor even told me it wasn't worth considering.)

I was recently diagnosed with mild-to-moderate sleep apnea after a sleep study. It had actually surprised me, as in the 6 months between when the study was ordered and when it actually happened, I had lost ~25 lbs and according to my husband hadn't been snoring at all anymore (I used to snore like a "chainsaw" apparently). Anyway...

I was given a CPAP machine along with a nasal pillows-style mask. I've tried to use it several times over the past 3 weeks, and I loathe it. I feel like I'm suffocating no matter whether the machine is on, off, or doing it's "ramping up" thing. I've forced myself to keep it on for hours, and I've fallen asleep with it a couple times, but I always wake up within an hour, and always with a tremendous headache. I'm at the point where just thinking about trying to sleep with it again makes me feel like crying.

I am planning to ask about getting a nose & mouth mask to see if it's the fact that I can't breathe through my mouth that makes me feel like I'm suffocating...but in the meantime, I'm just feeling VERY discouraged and miserable about the whole thing. I don't even have severe apnea ... I know there are some alternatives!

But I am having trouble finding first-hand accounts of people successfully using them. Also, I am having trouble finding accounts of people ever stopping CPAP therapy after starting it. Even people who have lost a lot of weight. And I find this really discouraging...

Has anyone here used (or known someone who used) alternatives to CPAP for sleep apnea with success? Has anyone ever been able to stop using CPAP therapy after losing weight (or anything else)?

Seeking Help with Some CPAP/Apnea Issues

WCityMike — Wed, 27 Sep 2006 08:49:41 -0800

Do you have sleep apnea and use a CPAP machine, or do you know someone who does? Help a CPAP newbie who's having a rough ride by answering a few questions and/or giving advice. In advance, please excuse me for the length of this; I'm asking a number of questions, which is why this goes on for a bit.

My first question on Ask MeFi was about CPAP (continuous positive airway pressure) shortly after being diagnosed with sleep apnea. I very much did not want to undergo CPAP therapy, and my life underwent some traumatic twists and turns, making it easy to push the therapy to the back burner. Recently, however, my doctor has made it clear I need to go back on it, and so after work on Monday, Walgreens Home Care dropped off a Respironics REMstar plus (with humidifier) and a medium ResMed Ultra Mirage Full Face Mask, which I've used for two nights.

First, both nights, I've woken up at least three times during the night, and, moreover, woken up fully conscious and alert. (This only happened rarely in pre-CPAP times.) In order to get back to sleep, I end up needing to essentially go from full consciousness to completely asleep each time, just as I would when I first lay down for the evening. Ideally, I'd love to be able to close my eyes with the CPAP machine on and wake up to the alarm in the morning, and get the full effects of an uninterrupted night's sleep, but that's not happened so far, and I'm quite concerned it won't. Although I have felt the positive effects of CPAP therapy despite the interruptions (I awoke yesterday not feeling as if I'd drunk a million cups of coffee, but nevertheless energetic; the effect is dampened somewhat today - not quite as good, perhaps light fatigue -- but my usual sensation of heavy fatigue seems absent), this nevertheless is a definite hit to my comfort, energy, etc., and I'm wondering when it's going to pass. (As a side question, my pillows seem to be sliding around a lot more than they used to; I'm less able to find a comfortable spot with my head and the pillow.)

Second, equal in severity and possibly related, I'm not sure how to prevent air leaks while remaining comfortable. I've familiarized myself with where and how to adjust the mask, but it seems like any slight change in position causes an air leak to occur, unless I cinch the mask extremely tight to my face. The training video depicts a man adjusting the mask and then being able to turn from side to side without readjusting; with me, even if I rest my head on my hand, it seems to alter my face enough that a leak manifests and I have to cinch the straps and/or adjust. This can alter my sleep; if I adjust myself to get comfortable to fall asleep, I suddenly have to start fiddling with the mask (in the dark) in order to end the leak. I should note that since I've breathed through my mouth for nearly my entire life, the nasal pillows or nasal mask is almost certainly not the route for me. (It was a big problem during my CPAP titration.) Is it a sign that the mask is too small? Too large? And is it acceptable for a leak to exist only during the exhale? I noticed last night that sometimes a "leak" seemed to appear only when I would exhale; if I put my finger near that spot when I was inhaling or not breathing, I detected no vent air coming out.

Third, and also nearly equal in severity, my nose has swiftly and quite severely broken out. Pardon the grossness (I'm not enthused about talking about this, either), but it went from (presumably) normal skin pre-CPAP, to a cluster of whiteheads after Monday night (although, admittedly, I only saw the whiteheads after applying moisturizer to the area), to an unpleasant state of affairs after last night. I get the sense that this is due not to the physical pressure of the mask on the bridge of my nose, but due to air pressure conditions inside the mask; I may be wrong, but where I'm breaking out seems to be not so much on the actual bridge of the nose where the mask is riding, but directly beneath it. When I Googled about this, one commenter advised a questioner that their skin would toughen up within a week's time. Is this the case, or can I expect the condition to just worsen?

Fourth, what is the easiest, simplest, most low-impact way of taking care of my equipment? I'm not very household-conscious or gung-ho about cleaning. The person dropping off the equipment did go through it with me, but I'd nevertheless appreciate your own experiences as to how you wash your equipment and how frequently.

Fifth, when I wake up a few hours before I would normally awake (say, around 4:00 am), it almost feels as if I am breathing normally and without the CPAP at all. Is this normal, i.e., my breathing having grown accustomed to the CPAP by that point? Or is it a mechanical thing, such as the machine "backing off" after a certain period of time? Or is it indicative of a seal problem?

Finally, and still quite importantly, I'm finding myself concerned that the CPAP machine will be a real blow against my attractiveness as a sexual and romantic partner for a woman. I understand that women do have an ability to look past things, but certainly there is also a surface assessment; I'm concerned that the idea of sleeping next to a man with CPAP equipment on his face is such a turn-off that I'll have great difficulty with romantic and sexual relationships in the future. Now, if you already loved the man in question, that would be one state of affairs - for example, if your husband or boyfriend was set up with CPAP after you began dating him, then the romance and the feelings were established first. But has anyone dealt with a situation where the CPAP was established prior to the relationship, and you had to deal with, at some point in the relationship, discussing the apnea and getting the partner acclimated to the idea of sleeping next to someone with equipment on their face?

To recount:

Waking up alert and conscious;
Preventing air leaks during casual movement;
Swift and severe acne outbreak on nose;
Taking care of equipment;
Feeling as if breathing is 'normal' after several hours of sleep; and
Sexual/romantic attractiveness.

Thanks, everyone.

Broke but suffering from sleep apnea.

SilverTail — Mon, 24 Jul 2006 17:54:56 -0800

Unemployed and uninsured but suffering from sleep apnea. What can I do? A few years ago I was diagnosed with sleep apnea. A CPAP machine was recommended to me, but I (foolishly) did not take the prescription because the thought of sleeping with a machine strapped to my face was appalling. Now, several years later, my apnea has become a serious problem!

Now I'm unemployed and uninsured. I need a CPAP, but aquiring a perscription would surely mean a visit to the doctor and most likely the sleep tests again. I simply can't afford it. What are my options?

CPAP Machine Question

AArtaud — Sun, 23 Apr 2006 22:03:03 -0800

I have a CPAP machine, a REMStar Plus, and I'd like to adjust the settings on it to turn it down since I've recently lost a lot of weight. I can't get to my clinic to do this since I'm currently in Nepal. Anyone have any suggestions on how to do this?

How do I sleep when I'm a lab rat?

emptybowl — Wed, 27 Apr 2005 08:02:12 -0800

I'll be going to the hospital for a CPAP fitting tomorrow night, which is a follow-up to a sleep study I had a few months ago. I've been reluctant to schedule the follow-up because in the previous sleep study I barely slept at all. I'd really prefer not to repeat that... The problem is that I thrash around a LOT both before and during sleep. Having electrodes connected to your body isn't exactly condusive to that kind of behavior though. As a result, I had to try sleeping on my back (not my preferred sleeping position), which made it very hard to get to sleep in the first place, and once I got to sleep, I would unconciously move, pulling out one of the electrodes, and they would have to come in, wake me up, and reattach it. All of this was very stressful and lead to me barely sleeping at all.

So my question to others who have had sleep studies done, what can I do to a) maximixe my comfort and calm myself down enough to actually fall asleep and b) not rip equipment out of the wall if I actually do get to sleep?

Also, to anyone who uses a CPAP machine, given my problems with getting comfortable, will I have the same problems every night with the CPAP strapped to my face?

People's Experiences with Sleep Apnea & CPAP?

WCityMike — Thu, 17 Feb 2005 14:32:05 -0800

I was recently diagnosed with moderate sleep apnea. My CPAP titration will be done a week from Saturday. I am wondering if people could share their experiences with CPAP; from what I understand, it can give apnea sufferers a dramatic upsurge in their energy and can lower blood pressure. I'd especially appreciate any experiences that correlate with weight loss efforts, as well as any experiences about CPAP treatment affecting people's teeth. (I don't think it does, but I did find one person's experience in Google with regards to their teeth feeling odd.) Finally, any advice current users of CPAP could offer would be appreciated regardless of subject, whether it be good models, tips to getting used to it, or anything else you'd like to share.