Central Sleep Apnea

[Kira]

I had a sleep study last week and was diagnosed with Central Sleep Apnea. (Not Obstructive Sleep Apnea... CSA is where your brain doesn't tell your respiratory muscles to breathe often enough when you are sleeping. OSA is where your airway gets temporarily blocked while you are sleeping so you snore, stop breathing/gasp, and have to wake up to breathe.)

I am trying to schedule my follow-up with the sleep specialist, but got the report and talked with my referring doctor. There are a few things that might be causing my CSA. One thing that could be causing it, or at least making it worse, is my pain meds. It could also be yet another mito thing, since neuromuscular and/or heart issues can cause it, too. I have clear neuro & muscle issues and some potential heart stuff, so it is hard to tell what the cause is (or maybe multiple causes).

What is causing it impacts how we end up treating it. They can try CPAP/BiPAP/etc no matter what the cause is, but if it is "just" the pain meds, then it should get better if we stop the opiates. I am scared to do that, though, because my pain is bad enough now, WITH the meds, so how bad will it be without them? But I am even more scared if it ends up NOT being the meds, because that leaves my brain, heart, and/or myopathy as potential causes, and it is scary to think that any of those systems are broken enough to cause this. Plus, maybe it is a combination of meds, neuro, muscles, &/or heart stuff... who knows.

Does anyone else have CSA (not OSA)? Do they think it is from your pain meds? Steve &/or Steve, what do you know about pain meds & CSA? I've been on long-acting opiates for more than 2 years, my doses haven't changed in more than a year, and I'm on pretty moderate doses (fentanyl patch and occasional prn oxycodone). Is this one of the side effects that improves with tolerance, like drowsiness & nausea, or is it one that doesn't really go away, like constipation? Is it the kind of thing where opiates will make underlying CSA from neuromuscular/cardiac issues worse no matter what (meaning it would be worth stopping the opiates even if they aren't the whole cause)? I don't want to look like a junkie to the sleep doc if they want me to stop the pain meds, but I am actually really scared of stopping the pain meds because I am kind of a baby about pain... although I guess I'd rather hurt than stop breathing.

[lobelsteve]

I had a sleep study last week and was diagnosed with Central Sleep Apnea. (Not Obstructive Sleep Apnea... CSA is where your brain doesn't tell your respiratory muscles to breathe often enough when you are sleeping. OSA is where your airway gets temporarily blocked while you are sleeping so you snore, stop breathing/gasp, and have to wake up to breathe.)

I am trying to schedule my follow-up with the sleep specialist, but got the report and talked with my referring doctor. There are a few things that might be causing my CSA. One thing that could be causing it, or at least making it worse, is my pain meds. It could also be yet another mito thing, since neuromuscular and/or heart issues can cause it, too. I have clear neuro & muscle issues and some potential heart stuff, so it is hard to tell what the cause is (or maybe multiple causes).

What is causing it impacts how we end up treating it. They can try CPAP/BiPAP/etc no matter what the cause is, but if it is "just" the pain meds, then it should get better if we stop the opiates. I am scared to do that, though, because my pain is bad enough now, WITH the meds, so how bad will it be without them? But I am even more scared if it ends up NOT being the meds, because that leaves my brain, heart, and/or myopathy as potential causes, and it is scary to think that any of those systems are broken enough to cause this. Plus, maybe it is a combination of meds, neuro, muscles, &/or heart stuff... who knows.

Does anyone else have CSA (not OSA)? Do they think it is from your pain meds? Steve &/or Steve, what do you know about pain meds & CSA? I've been on long-acting opiates for more than 2 years, my doses haven't changed in more than a year, and I'm on pretty moderate doses (fentanyl patch and occasional prn oxycodone). Is this one of the side effects that improves with tolerance, like drowsiness & nausea, or is it one that doesn't really go away, like constipation? Is it the kind of thing where opiates will make underlying CSA from neuromuscular/cardiac issues worse no matter what (meaning it would be worth stopping the opiates even if they aren't the whole cause)? I don't want to look like a junkie to the sleep doc if they want me to stop the pain meds, but I am actually really scared of stopping the pain meds because I am kind of a baby about pain... although I guess I'd rather hurt than stop breathing.

Kira, you know youa re always a special situation based on the Mito. However, opioids (particularly Methadone) are associated with CSA. This is greatly enhanced if using any Benzo.

http://www.chestjournal.org/content/128/3/1348.abstract
http://www3.interscience.wiley.com/journal/120089375/abstract

[Pharmacist.steve]

any drug that suppresses the Central Nervous System (CNS) has the potential to adversely affect this condition. Typically.. it is variable depending on the person... the number of drugs they take that could affect the CNS and the total daily dose of each drug..

[Mark N]

Kira, I haven't been diagnosed with CSA but I can tell you that my snoring and catching my breath during sleep have increased since starting my pain meds. My family is sure to keep me from getting a big ego as they laugh and imitate me to our delight.

I understand your fear about the pain meds and doing without. I can imagine going off your meds and how bad it would it would be. If you pursue this I hope you don't have to be off your pain meds for long.

[jtroy]

Hey there Kira:

Reading your thread was like reading a Xerox copy of what I went through as well. I had never had any real sleep problems in my life...it seemed like college and then vet school (where I "dreamed" (pardon the pun) about operating with no sleep ever) went quite well in spite of long days and nights studying.

Then the pain came along. In 2000 I began to notice that I was having trouble falling asleep and this was when my pain got to a point where I was disabled (although I didn't label myself with that term at that point.) So, I naturally assumed that the pain was likely the issue since it could wake me from a dead sleep and certainly prevent me from falling asleep when I was bad. The docs threw the normal sleeping pills at me along with the other meds and they didn't seem to help. As a matter of fact, when a doc gave me a script for Ambien later on I found that it actually made me quite hyper.

About the time I started college I noticed (along with others) that every great once in a while I would "nod off"...could be any time but usually happened during class--especially in vet school. The thing is it could happen any time anywhere and even happened a couple of times while I was driving---totally scared my wife. Again, chalked it all up to just not sleeping enough.

When I became disabled and was on pain meds this effect was dramatically increased. I chalked it all up at that point to lack of sleep and the typical "narco nods." So, finally had the sleep study done....came up with the same result you had. The sleep "specialist" (wasn't very impressed with the guy) indicated that once I began to use the Bipap all would be well, I would sleep normally and that would be the cure. My pm doc was far less optimistic and after taking a look at the polysomnogram indicated that I was just barely at a level where an insurance co would pay for a Bipap and so on. To be honest I went to the sleep doc b/c I felt like it was likely Narcolepsy b/c I literally was falling asleep at stop signs, traffic lights, etc., and would wake up once the person behind me honked like mad. Plus I would be in a conversation and fall asleep right in the middle of talking.

So, the sleep doc said to wear the Bipap and not to complain about sleep until I'd done it for 6 months...which my wife made sure happened. It truly honestly was the worst 6 months of my life (as far as sleep is concerned I mean.) I hated it---and I think everyone who uses them hates them initially---however, it just made it too difficult for me to fall asleep (which, ironically, is what frustrated me the most.) After 6 months I gave my sleep doc all my sleep diary info, complete with my narcoleptic episodes, as well as brought the little computer card so he could verify my compliance, look at its data, etc. At that point he simply told me that I needed to continue with the Bipap and also asked if I needed to purchase a new mask and that they could take care of all that during check-out. I didn't need one.

So I went to my PCP the very next day and luckily he is a good friend so he actually will give me 30 minutes or more when I come in for something. I laid it all out for him and told him that I didn't want to have to take the powerful meds required for people with narcolepsy if my sleeping issues were related to the Methadone I was on. He told me that if the problem had begun when I started taking opioids then he'd have some concern but the problem began before and opioid had ever entered my body. So he started me on Provigil...there was a positive response (meaning fewer episodes of nodding off) from my 1st dosage. He later increased it to the maximal dosage and there was more improvement, however, my insurance co balked at it and it simply was too expensive for me to afford. At that point he decided to change me to Adderall much to my dismay (I just don't like the idea of taking Amphetamine knowing my sister has been a Methamphetamine addict for 15 years) but there was a far better response. We slowly worked my dosage up (I insisted on started extremely low and slowly moving to an effective dosage and no more---my doc told me that I would likely not have to move up on the dosage as a narcoleptic and would be able to stay there for long periods) to 20mg am, 20mg noon. I've been on that dosage for over 2 years now and I have not had a single episode of nodding off while on it. Plus, it completely normalized my sleep/wake cycle. I no longer take Methadone (I'm on Fentanyl now) and it doesn't matter what opioid I'm on.

Long story even longer, perhaps for me there was/is a mixture of CSA and narcolepsy. My pm doc indicated that he would have only put me that if I truly had only CSA he wouldn't have put me on a Bipap unless I was so apneustic that there was a potential for bad things to occur if not on it. He also told me that if all his patients who take opioids were to go through a sleep study you'd likely see a ton of them with CSA (assuming they don't have OSA) because of the opioids.

In your situation there is the whole Mito issue....I honestly can see how that would contribute significantly as well. However, all of us in pain have to look at life from a qualitative standpoint and for years I made my own life a living hell because I didn't want to take meds, didn't want to go to docs, etc. When I gave in I began to realize that I'd rather have 1 great hour a day on meds as none without them.

My sleep doc did make the comment, "Methadone can contribute to what I'm seeing on your polysomnogram and I think that it absolutely is what is causing you to nod off at lights, fall asleep while driving, and completely fall asleep in the middle of a sentence during conversation....if your only reason for taking it is head pain you should consider greatly reducing it and perhaps even stopping it altogether." Those are the times a guy would like to take a nutcracker (you know, pecans, walnuts, etc.) and place one testicle in it while squeezing firmly and then asking him if he'd consider stopping it if that was how he felt all the time.

Kira, no matter what you end up deciding or what the docs tell you...you are not a junkie and if you get the vibe your sleep doc is going down that road stop him/her in their tracks and tell them so. You have a real reason for taking the opioids or else you wouldn't. It's normal for all of us cp'ers to always feel uneasy with new docs (lets face it...society places this stigma around the whole pain issue but particularly on the meds) b/c we don't want to appear dependent on the meds when the truth is we cannot function without them. When I was diagnosed with CSA I did a ton of research myself as I'm sure you have. Steve and Steve certainly correctly advised that the opioids will contribute to it.....however, your Mito certainly likely also contributes and I don't think without many many different diagnostic tests they could say that it doesn't.

Bottom line....are you gonna keel over while sleeping? That is the number one question I'd ask the doc. Specifically, if opioids were out of the equation would you need a Bipap? If the answer is yes then it isn't going to matter whether you quit the opioids or not. Perhaps the best thing to focus on is just how apneustic you are. You likely are going to be put on a Bipap no matter what and I doubt seriously that your doc will say it's ok to go without one if you quit opioids. Lastly, consider your quality of life with and without pain meds. If you can have a good quality of life without them then maybe it's worth discussing it. However, if not, then remember what I said earlier....you are no junkie...this I know from just your participation here....and you deserve the best life you can have. Sorry about the length...I don't know how to be short-winded.

My email is: tjandfon@hotmail.com.....feel free to email me any time if you have any questions or just want to know more about how things will go, more about sleep docs, etc....I know all about Bipaps, masks, on and on from the day. I'm assuming you went in because you are having trouble sleeping, I don't know....but it's never an intrusion to email and I generally get back to emails quickly. Wishing you the best....wish I could be of more help. I hope it all goes well for you...keep us posted.

Regards,

T. Jones, DVM

[Kathi49]

Kira,

I am sorry to hear this but am GLAD you brought it up. I had an episode last night; the worst I have ever had (choking). And I have not increased any of my meds. BUT...I did have a vivid nightmare; don't recall if the episode was before or after that. It was like I knew it was happening but couldn't wake up. When I was finally fully awake my throat was dry and raw. Every now and then, like Mark, I might gasp or sigh...but nothing like what happened last night. I asked my husband if I snore and he says not all the time...just every now and then. Well, it scared me enough that I think I might ask for a sleep study and also because my Neurologist has mentioned it before. I just didn't see a need for it at the time. Or, maybe it was the nightmare itself...I just don't know. And I am grateful for the info. the Steve's posted as well as Troy. I am sorry you are having to contend with this and hope you can get a resolution.

[Kira]

Thanks for the replies. I looked at the links and they were helpful... actually got me thinking about my other meds (besides pain meds), particularly Baclofen, since the one table does seem to show a small association with muscle relaxants... the Baclofen isn't really working lately, anyway, so that might be a med that could be tapered without making me feel much worse. I do understand that nothing is simple with my disease, and that it is probably a combination of things--that even if the main reason for the CSA is mito stuff, the opiates & baclofen probably aren't helping. I liked how Dr Troy put it, though--how bad would the CSA be if I wasn't taking any opiates, and would I still end up needing BiPAP anyway?

I think the BiPAP will probably bug me at first, like it bugs most people, but I honestly am not that weirded out about trying it. I have gotten used to being hooked up to stuff after so many hospitalizations in recent years, and if it helps me sleep better and potentially have more energy, then I am all for it. A friend of mine who also has mito recently started nighttime BiPAP for hypoventilation from her neuromuscular issues and says it seems to be helping a lot with energy levels. Plus, she is lucky enough to see some of the nation's experts in mito (due to where she lives), and had recently heard from her mito doc, pulmo/CCM doc, and sleep doc that they are seeing good results with NIV (non-invasive ventilation, including BiPAP) for mito patients that have even milder neuromuscular issues. (Theorized to have something to do with worse metabolic effects of chronic hypoventilation/low O2 in us... our mitochondria already don't work well, and now Complex V isn't getting as much O2 to make ATP with, so it makes our ATP metabolism even worse... plus we are generally bad at anaerobic metabolism and blah blah blah).

To be fair, I haven't even talked to the actual sleep doc yet, so they might be very good about juggling the issue of my pain vs CSA. When I first saw my GI doc for gastroparesis/dysmotility (from the mito, probably worse b/c of pain meds), I was worried that all he would do was tell me to stop the pain meds and not deal with the potential mito aspect of it... but he ended up being really good about it and I like him a lot. I just get very sensitive about the pain meds issues because of some experiences in the ER/hospital and because of some life experiences with people I love who have struggled with addiction. Plus, like I said, I am genuinely scared of trying to get through the day with untreated pain (though I'm sure that my pain doc wouldn't leave it totally untreated and we'd try to come up with something).

About the severity of the CSA... I am not really sure. I do have the report from my sleep study, and the good news is that I didn't get terribly hypoxemic or hypercapneic (based on end-tidal CO2 and SpO2). My sleep was really, really fragmented. Basically, I would start falling asleep, get into N1 or maybe N2 sleep, get apneic/hypopneic, wake back up, and repeat... in cycles that usually lasted a few minutes at most... all night. I did have one period of consolidated N3 sleep for 50-some minutes starting at about 4 am, but that was it. Otherwise, I didn't get to N3 sleep any other times and had NO REM sleep at all (though I know I have REM sleep sometimes, because I do dream). One interesting thing is that all of my apnea and hypopnea happened during transitional sleep (where you're falling asleep), and I had NO apnea or hypopnea during that one period of consolidated sleep.

It says that I had 58 awakenings. I spent 407 minutes in bed, started falling asleep 57 min into the night, but only slept a total of 168.5 minutes all night. Arousal Index 5.7/hr. I had prolonged sleep latency, severe sleep fragmentation, and moderate alpha-NREM intrusion.

For the respiratory stuff, I had 16 central apneas, 32 hypopneas, and 31 respiratory event related arousals (RERAs). I didn't have any obstructive events. AHI was 17.1/hr; RDI was 28.1/hr. My SpO2 was actually really good... mean SpO2 of 94%, nadir of 85%, only 3.6 min spent below 90%. End-tidal CO2 was pretty good, too, but my expected "normal" PaCO2 should be lower than normal people because of my chronic metabolic acidosis (my bicarb is usually 17-18 mg/dL). My avg end-tidal CO2 was 38-41 torr while awake and 40-42 torr while asleep. HR was fine, but I'm on a beta-blocker for autonomic dysfunction.

About the beta-blocker... a year ago, I started taking atenolol for sinus tachycardia from what we presumed to be autonomic dysfunction. I did a Holter monitor and (in Jan 08), it showed HR peaks up to 160 bpm while sleeping/resting, with an avg HR of about 100 bpm. At the time, we blamed the tachycardia on autonomic dysfunction from my mito, because I have some other autonomic symptoms as well (temperature instability, labile BP, GI dysmotility, etc). The atenolol works great to stabilize my HR, but I am wondering if the HR peaks during sleep that we saw on the Holter were actually from CSA... not from a dysfunctional autonomic nervous system, but from an autonomic nervous system that was actually appropriately responding to the stress of apneas/hypopneas... (???) Who knows... Just theorizing.

I am being really long-winded, but this is something I've been thinking about a lot lately while I wait for appointments. If you read all of this, thanks...

[Nana4&cntn]

Kira, I take a ton of meds and my PM became concerned about the raise in my Methadone and decided to do a pulse/ox test over night for 2 nights. The company that brought out the finger test things, picked them up after the 2 nights.

My PM received the results my pulse/ox was in the 80's and not sufficient. I was delivered an oxygen unit with a humidifier as part of the unit, with a canula. After the first night I used the canula, I had another pulse/ox finger thingy and slept again w/canula and am back in the hi 90's.

My PM is positive the methadone and muscle relaxants are responsible for the lack of oxygen at night, which is the only time I need the oxygen. After I got used to the noise (not that loud, just different) I sleep like a baby at least a full 8 sometimes more hours a night! I feel so much better after I sleep!

I don't have Mito problems, but thought I would throw that out there for you.

Take care and I am happy to see you back!
Kathy