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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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robysue
 
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Re: Three months in and I still feel like absolute crap

Postby robysue on Sun Apr 23, 2017 3:55 pm

drfaust wrote:I posted here because I still feel like I "fight" with my machine all night. My mask isn't uncomfortable, but I get tangled in the hose, or it gets caught on something, or the pillows slip out of my nose and I have to wake up and put them back in, etc.

I remember that feeling of "fighting" with my machine all night. Took me a long, long time to make peace with Kaa, my name for the damned machine.

In my case it was the intentional exhaust flow from the Swift FX blowing on my arms or hitting the blankets and blowing back into my face and chapping my lips pretty badly. And that went on for months.

The good news is that you will eventually figure it out.

Let's tackle that "get caught in the hose problem." Where do you run the hose? and how do you sleep?

Hubby is a stomach/back sleeper and he likes to run his hose over the headboard to the top of his head and down to his face. He finds that minimizes his getting trapped in the hose.

I'm a side sleeper who rolls back and forth all night long. I prefer to run my hose under the covers along my body and hug it as if it were a large stuffed toy. Hugging the hose allows me to turn over and bring the hose with me instead of getting tangled in it.

So tell us about your favorite sleep position and what you are currently doing with your hose.

As for the nasal pillows slipping out: eventually you will learn to pull the pillows slightly away from your face and let go of them so they settle back down and reseal without the need to wake up enough to know that you're doing it.

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kteague
 
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Re: Three months in and I still feel like absolute crap

Postby kteague on Mon Apr 24, 2017 4:15 am

When there's more than issue going on, the best we can do is address the known factors and see what residual symptoms remain. I agree with those who mention medication side effects as something to consider. It is my personal opinion that your case could benefit from another sleep study, but this time while sleeping with cpap at your seemingly therapeutic settings. Another study without cpap would tell you nothing about what's going on in your sleep with cpap and while mediciated as you currently are. It can be hard to get a doctor to agree to do something besides the usual diagnostic study or titration. I was lucky to find one. A few statements you made about your sleep caught my attention. Is your "waking up paralyzed" sleep paralysis? Have you been tested for narcolepsy? Unfortunately standard MSLT (the daytime nap test) wouldn't likely be diagnostic if on a REM suppressing medication. Can you perhaps find a neurologist who specializes in sleep disorders beyond OSA? Please do continue to use your cpap - I doubt anything else you find out will change your diagnosis of OSA.

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robysue
 
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Re: Three months in and I still feel like absolute crap

Postby robysue on Mon Apr 24, 2017 10:21 am

kteague wrote:When there's more than issue going on, the best we can do is address the known factors and see what residual symptoms remain. I agree with those who mention medication side effects as something to consider. It is my personal opinion that your case could benefit from another sleep study, but this time while sleeping with cpap at your seemingly therapeutic settings. Another study without cpap would tell you nothing about what's going on in your sleep with cpap and while mediciated as you currently are. It can be hard to get a doctor to agree to do something besides the usual diagnostic study or titration. I was lucky to find one. A few statements you made about your sleep caught my attention. Is your "waking up paralyzed" sleep paralysis? Have you been tested for narcolepsy? Unfortunately standard MSLT (the daytime nap test) wouldn't likely be diagnostic if on a REM suppressing medication. Can you perhaps find a neurologist who specializes in sleep disorders beyond OSA? Please do continue to use your cpap - I doubt anything else you find out will change your diagnosis of OSA.

+1

kteague's advice is spot on!

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Re: Three months in and I still feel like absolute crap

Postby ajack on Mon Apr 24, 2017 11:58 am

+1 on a sleep study
with the nightmares, it looks like you are getting some REM with the CPAP, even with the potential REM suppressing meds. Although confronting, this his may help your mental health and may settle to dreams. as you would know by now, apnea and depressive illnesses go hand in hand.

As well as sleepiness, the SNSR group can also cause/aggravate PLMD, which will show up in the sleep study. Don't think you are locked in to effexor and is something to discuss with your doctor. There are other brands in the SNSR group. It's a matter of finding one works and has the minimum side effects for you. There are also different types of meds for mental health, using different pathways. Valdoxan is one, it also helps with sleep disorders.

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Re: Three months in and I still feel like absolute crap

Postby ChicagoGranny on Mon Apr 24, 2017 12:15 pm

drfaust wrote:That brings us to the psychiatrist. I do suffer from anxiety, which is under control right now with a relatively high-ish dose of Effexor. I also take 1mg clonazepam before sleep, which has actually significantly helped reduce the severity of my nightmares and reduced my nighttime arousals. We've experimented with lots of other things too: prazosin (used to treat nightmares in PTSD patients -- didn't do anything for me), trazadone (didn't do anything), amitriptyline (turned me into even more of a zombie the next day), low-dose zyprexa at bedtime (same thing as the amitriptyline -- zombie-city).


That's a lot of powerful drugs that have been through your system, and some are still going.

Therapists and psychiatrists have a very poor record of failing to recognize sleep apnea and treating the patient improperly. There's a chance that all your problems were because of untreated sleep apnea. CPAP would have been the only proper treatment, and all those drugs caused problems and are still causing problems.

What do you think about working with your doctors to taper off all drugs?

You are right to focus on sleep hygiene. You don't mention caffeine - be very careful, even of caffeine in chocolate.

BTW, have you heard of REM rebound? It's experienced by people who are suddenly sleeping well after a prolonged period of sleep deprivation. The brain is "starved" for REM and tries to catch up over a period of weeks or months. During this time vivid dreaming may be frequent.

tan
 
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Re: Three months in and I still feel like absolute crap

Postby tan on Mon Apr 24, 2017 8:42 pm

drfaust wrote: The sleep doctor only cares about the AHI. He says I'm doing great and should ignore all of the sleepiness,

You have a clueless doctor. Find yourself another one who knows about UARS, because it's what you have and that's why you still feel absolute crap

So -- I'm wondering if any of you experience non-restorative sleep, and if any of you have dealt with this in the past, what strategies have you used that have been helpful?

Can you share your Sleepyhead charts?

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Re: Three months in and I still feel like absolute crap

Postby drfaust on Thu Apr 27, 2017 8:31 pm

Thanks everyone for your thoughtful replies! I can't hit on every point by every one, but here are some thoughts:

Another sleep study: I see the sleep doc on Monday. I can ask about that. One issue is that I am a *terrible* sleeper in general. In my diagnosis study I got 3.5 hours of sleep and in my titration study I got 4 hours of sleep. And in neither study did I get any REM. I get sleep claustrophobia, and having things attached to me while sleeping in an uncomfortable bed makes it very hard. I fell asleep fast enough (About 20min sleep latency for both studies), but I couldn't stay asleep. Though I did get a decent amount of Stage 3 sleep in both studies.

Meds: Effexor is the only antidepressant that has worked for me, and has the fewest side effects of any I've tried. Because I'm no longer having 6-hour long panic attacks, I'm hesitant to go off of it for now anyway. And actually I feel MUCH BETTER and MORE ALERT the next day after started the clonazepam. It is the best think I've found for suppressing nightmares, which interfere horribly with my sleep. I've had the nightmares for as long as I can remember (I've never been a good sleeper -- the feeling like crap all day is not new since CPAP, either), and when I started on the clonazepam recently, things got MUCH BETTER. So the residual daytime sleepiness isn't hangover from the clonazepam. On the contrary. I credit it with me not waking up in panic attacks from nightmares most nights. The gabapentin is new this week -- we're tinkering around with it, and it's a very small dose. I had been using 5-10mg of melatonin, but the sleep doc thought gabapentin might be worth a try instead of the melatonin for a while. Things haven't gotten any better or worse with that yet, but the doc said we can tinker with the dose and see if anything happens. If not, we can get rid of it. But it certainly isn't the cause of the sleepiness, either.

Paralysis/Narcolepsy: I actually did not mean paralyzed in a technical sense -- sorry for that. I have experienced sleep paralysis before, but just a few times. It's not a regular thing. It's really horrible, let me tell you. The doc was a bit worried about narcolepsy because I have actually fallen asleep standing up while talking to someone on several occasions recently -- maybe 5-6 times in the last 2 months (yes, I'm that tired... and only one time was I actually talking to someone, but the other times were doing routine normal things, like waiting in line). But since my sleep studies showed no REM, the doc says that narcolepsy can't be what's going on, since a hallmark of that is onset REM apparently.

Sleep/hose position: I'm generally a back sleeper, but I will roll to my side when my bladder starts filling up (I can buy myself some time before getting up if I roll on my side) or when my low back starts hurting (mild lumbar arthritis -- since I've been nearly incapacitated with sleepiness I haven't been able to run/exercise like I used to, so my core strength is starting to go, so my back is bugging me). I keep the hose routed on top of me, hugging it like one person said, so that when I roll, I can take it with me.

Cohesiveness of care team: Yes, my GP, sleep doc, psychiatrist and therapist are all on board and part of the same health system and can review each other's notes (I've given the therapist permission to share notes with the other docs). So no secrets, and they all know what the others are doing. The sleep doc seems to be the least interested in my actual sleep, though. Like I mentioned, he only looks at the AHI number and assumes I'm treated perfectly. But he believes me when I say that I'm having residual sleepiness... it's just not what he focuses on. My psychiatrist has been the most helpful in dealing with this stuff. She's who recommended the clonazepam for nightmares, and it helped a lot (and reduced my residual sleepiness).

Shots from sleepyhead: I've posted a few before (see link in my previous messages), but was told not to worry about it. Sleep doc said that those "apneas" are probably me just rolling over. Otherwise you won't see anything very interesting because it reports my average AHI as around .7. I just get clusters of them, especially right when I fall asleep, and more toward morning.

Masks: Sleep doc and CPAP therapist at the DME both recommended nasal pillows. So that's what I got. I had them past the 30 day return window, so when I asked about trying something different, they said that if I wanted insurance to pay, I had to wait another 5 months to get another mask. So I got a paper prescription and ordered a nasal mask (N20) online. It gave me panic attacks. I'd get condensation from my exhalations in the mask (not from the humidifier in the hose), which would make my nose itch -- when I'd try to scratch it in my sleep I would reach up to feel my nose and I couldn't get to it (because there's a mask over it, obviously), which would trigger nightmares, panic attacks, and me waking up and ripping everything off of my head. I tried various suggestions I saw on this and other boards to reduce condensation, but nothing worked. And the mask was way less comfortable than the pillows anyway.

Also, because of the nightmares and talking/shouting in my sleep, I often open my mouth, which causes air to leak out and wakes me up. I use a chin strap, but it can only do so much. I had read about taping on here, so I tried that, but that led to panic as well (when you can't open your mouth in the middle of a nightmare, it's not a good thing). I'm not a habitual mouth breather at night -- it's just when my dreams lead me to talk or shout. In my titration study this was happening constantly, and the hypnogram shows me going between awake and N1 sleep constantly for a huge portion of the night because of the mouth opening issue associated with shouting with air shooting out my mouth.

This past week I've actually had some good days, but they were gotten "the wrong way". I had my normal 8 hours in bed with CPAP (for which I was "asleep" pretty much the entire time). But when my alarm went off, I took off my mask meaning to get up but immediately fell back asleep and slept 4 more hours or so. This happened 3 days this week. When I woke up from that second CPAP-free sleep, I felt normal and could get a normal day in after that (even though I wasn't getting out of bed until 11am).

That said, I just got my prescription for modafinil. I said I was worried about triggering insomnia, since I already have such trouble with sleep, but she said that in her experience, most patients don't actually have trouble with insomnia when on modafinil -- they actually sleep better because they can get up, be alert, get work done, be active, exercise, etc. So they're sleepier at night. So I'm curious to give this a few days' try to see if it helps out.

Thanks all. I'm a tough nut to crack, I know. My sleep has been an absolute mess for years -- I'm sure even before I developed apnea. I was hoping CPAP would be a cure-all, but it's obviously not that. I'm still holding out hope for things to improve.

But in the meantime, gosh I'm tired. Really, really tired.

EDIT: One thing my psychiatrist hypothesized about -- since I'm just coming out of several months of severe panic disorder, which is not just hard on the mind, but also the body (think of all of that cortisol constantly doing its damage), she thought that maybe this most recent round of insane sleepiness (falling asleep standing up, etc), might just be my body recovering from months of trauma. Seems reasonable to me. But it doesn't make it any easier to get through this time.

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Re: Three months in and I still feel like absolute crap

Postby drfaust on Thu Apr 27, 2017 8:43 pm

tan wrote:
drfaust wrote: The sleep doctor only cares about the AHI. He says I'm doing great and should ignore all of the sleepiness,

You have a clueless doctor. Find yourself another one who knows about UARS, because it's what you have and that's why you still feel absolute crap



One problem -- I live in a small town. It took me 8 months from my GPs referral to the sleep doc to finally get in for my initial consultation. It took me 5 months to get a psychiatrist consultation. Doctors are *that* backed-up here.

And isn't CPAP the treatment of choice for UARS, anyway?

https://stanfordhealthcare.org/medical-conditions/sleep/upper-airway-resistance-syndrome/treatments.html

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Re: Three months in and I still feel like absolute crap

Postby Julie on Thu Apr 27, 2017 9:15 pm

You mentioned taking 5-10 mg of melatonin... very many articles and med profs now suggest (as many here have) taking the lowest possible dose... e.g. 1-3 mg (if that) because it often works better, with fewer side FX than the relatively huge doses prescribed in the past. It is, after all, a hormonal substance, not a 'drug' in the usual sense, and it reacts differently in many people used to drugs regulated by certain doses no matter what. I find if I take just 1-2 mg half an hour before bed only on nights where for whatever reason I don't feel sleepy, it helps to knock me out a bit better, but after a couple of nights begins to backfire... so I stop it altogether until the next time I feel the need. Fwis.

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Re: Three months in and I still feel like absolute crap

Postby tan on Fri Apr 28, 2017 1:04 pm

drfaust wrote:
tan wrote:
drfaust wrote: The sleep doctor only cares about the AHI. He says I'm doing great and should ignore all of the sleepiness,

You have a clueless doctor. Find yourself another one who knows about UARS, because it's what you have and that's why you still feel absolute crap



One problem -- I live in a small town. It took me 8 months from my GPs referral to the sleep doc to finally get in for my initial consultation. It took me 5 months to get a psychiatrist consultation. Doctors are *that* backed-up here.

And isn't CPAP the treatment of choice for UARS, anyway?

https://stanfordhealthcare.org/medical-conditions/sleep/upper-airway-resistance-syndrome/treatments.html

CPAP maybe a treatment, but in case of UARS, AHI don't really corelate with how you feel and that's why your current doctor is useless. And I am not sure whether machine-detected RERA counters are also valid.

In my case of UARS, my AHI numbers were often "0.0", aka yellow smiling face, but I felt quite-quite tired after a night with "perfect" numbers

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Re: Three months in and I still feel like absolute crap

Postby tan on Fri Apr 28, 2017 1:20 pm

drfaust wrote:This past week I've actually had some good days, but they were gotten "the wrong way". I had my normal 8 hours in bed with CPAP (for which I was "asleep" pretty much the entire time). But when my alarm went off, I took off my mask meaning to get up but immediately fell back asleep and slept 4 more hours or so. This happened 3 days this week. When I woke up from that second CPAP-free sleep, I felt normal and could get a normal day in after that (even though I wasn't getting out of bed until 11am).

I know what you experience. Kinda crashed. While you feel relieved that day, the sleep cycle gets violated afterwards. With you meds, the picture is quite complicated: too many variables.

On taping and chinstrap. The latter was useless in my case, the former worked well, if I used partial cover. But I don't see "grey area" leaks in your links. You say that nightmare cause the leak spikes, as in the pictures. Could it be the other way around: leaks cause nightmares and awakening?

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Re: Three months in and I still feel like absolute crap

Postby drfaust on Fri Apr 28, 2017 7:09 pm

tan wrote:
drfaust wrote:
tan wrote:
drfaust wrote: The sleep doctor only cares about the AHI. He says I'm doing great and should ignore all of the sleepiness,

You have a clueless doctor. Find yourself another one who knows about UARS, because it's what you have and that's why you still feel absolute crap



One problem -- I live in a small town. It took me 8 months from my GPs referral to the sleep doc to finally get in for my initial consultation. It took me 5 months to get a psychiatrist consultation. Doctors are *that* backed-up here.

And isn't CPAP the treatment of choice for UARS, anyway?

https://stanfordhealthcare.org/medical-conditions/sleep/upper-airway-resistance-syndrome/treatments.html

CPAP maybe a treatment, but in case of UARS, AHI don't really corelate with how you feel and that's why your current doctor is useless. And I am not sure whether machine-detected RERA counters are also valid.

In my case of UARS, my AHI numbers were often "0.0", aka yellow smiling face, but I felt quite-quite tired after a night with "perfect" numbers


I'll ask the doc about UARS on Monday when I see him, and educate myself on it beforehand. The machine almost never reports RERAs... mostly just central apneas, and some hypopneas.

As for your other comment about nightmares -- the nightmares have been there for decades, so I don't think it's the leaks causing the nightmares. The nature of the nightmares hasn't change (though they've gotten less severe/frequent since starting the clonazepam).

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Re: Three months in and I still feel like absolute crap

Postby DaisySmith on Sun Apr 30, 2017 10:34 am

how is your diet? Are you getting a lot of good protein or do you eat processed foods/carbs?

How is your sleep hygiene in terms of your nighttime routine?

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Re: Three months in and I still feel like absolute crap

Postby robysue on Mon May 01, 2017 8:06 am

drfaust,

It sounds like you've got a good medical team working for you.

You also write:
drfaust wrote:EDIT: One thing my psychiatrist hypothesized about -- since I'm just coming out of several months of severe panic disorder, which is not just hard on the mind, but also the body (think of all of that cortisol constantly doing its damage), she thought that maybe this most recent round of insane sleepiness (falling asleep standing up, etc), might just be my body recovering from months of trauma. Seems reasonable to me. But it doesn't make it any easier to get through this time.

I think the psychiatrist may be right. And in that case, it may be that you just need to give the CPAP ---and the antianxiety meds--- more time.

Your body needs time to recover from the "several months of severe panic disorder" combined with the months or years of sleep disordered breathing. It sounds like you may be starting to stabilize---i.e. things are getting worse anymore. And that's important: Before "how you feel" can start improving, you first have to get to a point where the downward spiral of feeling worse and worse and worse has ended. You can only start going up (in terms of how you feel) if you've quit going down (in terms of how you feel.)

As you said, knowing this doesn't make it any easier to get through physically. But knowing this can help keep you working towards the solution rather than abandoning it too early.

Good luck!

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Re: Three months in and I still feel like absolute crap

Postby HannaJ on Mon May 01, 2017 2:13 pm

Sorry to wait so long to post. Have you been checked for REM behavior disorder? The dreaming you describe makes me think this might be part of your problem. Do you thrash about in your sleep, maybe even inadvertently whacking yourself or your partner? Clonazepam is prescribed for RBD, but you can also use melatonin, which has lower risk of side effects. SSRIs like Effexor can trigger REM without atonia (REM sleep without the muscle paralysis that normally prevents you from acting out your dreams), which can look like RBD.

I don't want to alarm you, but REM behavior disorder is strongly correlated with later development of serious neurodegenerative disorders, like Parkinson's disease and multiple system atrophy. If CPAP isn't delivering relief, and if you have dreams of being attacked, and if you thrash around in your sleep, definitely research this disorder and get checked by a sleep specialist/neurologist. It should show up clearly on a titration/sleep study, in both the video and the graphs, but you need a top sleep specialist for a definitive diagnosis.

If you have SSRI-related RBD, stopping the SSRI can halt the RBD. I took SSRIs for many years; I have some kind of RBD, and have stopped the SSRI. My mental health has gone to s--t, because I haven't yet found an effective replacement antidepressant, but I seriously want to get rid of the RBD.

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