Newbie alarmed by sleep study- Central SA, 125 AHI, 57% O2!

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Newbie alarmed by sleep study- Central SA, 125 AHI, 57% O2!

Postby imsleepyinmi » Sat May 22, 2010 9:22 pm

Hello,

I have been lurking around here since scheduling a sleep study a couple of months ago--what a wonderful resource this is! At the time the initial sleep study was scheduled, they also scheduled a CPAP titration for next week. It took quite some time--maybe 6 weeks or longer?--from the time I requested the PSG to the scheduled date, so maybe they schedule CPAP titration at the same time so patients who need it don't have to wait so long.

I am 35 year old female, married with one young child, obese but otherwise quite healthy; lab tests & blood pressure are always good. I chase my kid around a lot and we have busy lives so I am not sedentary, but I rarely exercise or use our (expensive :roll:) gym membership except to take my child to the pool. I have heard concerns/complaints about my nighttime breathing and/or snoring since I was a teenager (and skinny!). Motivation to get sleep study occurred after vacationing with 2 doctor friends in the past year, both of whom seperately expressed serious concern about my snoring and ability/need to sleep during the day at the drop of a hat. Of course husband also complains that I snore loudly. :oops:

My all-night sleep study occurred last weekend. It went fine--I slept normally, felt comfortable, etc.

Someone from my PCP's office called yesterday morning and said, "Your test results show you do have sleep apnea, so go ahead and keep your CPAP titration appointment." I was told that I could pick up the test results from the office if I wanted. I assumed that my apnea was mild and weight-related, but decided to pick up the sleep study report just out of curiosity. It was a seriously rude awakening. Here are my results:

Total sleep time: 7H 23M
Stage Shifts 97
Arousals 107 (arousals per hour=16)
Latency to sleep: 1.5 min
REM latency: 166 min

Stage N1 Sleep 13.8% of total sleep time
Stage N2 Sleep 68.8% of total sleep time
Stage N3 Sleep 0.00% of total sleep time
Stage R Sleep 17.4% of total sleep time

Sleep Efficiency 90.7%

AHI=125.1
Mean sleep % SpO2=90
Min % SpO2 = 57
% of sleep time with SpO2 < 88% = 19.1

RDI=125.1
Obstructive Apnea Index=0.4
Central Apnea Index=20.3
Hypopnea Index=104.3
RERAs=0
Additional apneic events during wake epochs: 15
Cheyne Stokes breathing: No
Snoring: Frequent, Very Loud

Interpretation: This baseline PSG demonstrates severe sleep-disordered breathing in the form of obstructive and central sleep apnea, worse in REM sleep. The patient's sleep-disordered breathing was characterized mostly by hypopneas with clear obstructive features, but also by excessive central apneas (not in a periodic pattern). Many of the scored central apneas were associated with subtle obstructive features. In REM sleep, persistent O2 saturation was noted, with the patient's oxygen saturation often remaining 76%-84% due to the frequency of obstructive hypopneas, reaching a nadir of 57%. In the absence of respiratory events, it is also notable that the patient's respiratory rate most often ranged between 9 and 10 breaths per minute, which is borderline bradypneic.


So...have I been killing myself while I sleep? I was not upset about this until I saw the sleep study--I wasn't delighted at the idea of the CPAP, but felt OK with it. I figured that if nothing else, my husband would be happy not to have to listen to my snoring. Then when I read the study...well, I started to feel a little panicky, like I just barely missed being hit by a train. I am a little bit afraid to go to sleep now, which is silly since I've probably had this most of my life.

As far as I know, there are no future plans for consultation or treatment except to attend the CPAP titration in a week. We attend a huge medical system for our health care, which is great in many ways but also painfully bureaucratic at times. I *think* that I am supposed to see my PCP if I have any questions or concerns, but I feel that these results are so severe that I would like to speak with a sleep specialist. My insurance allows me to self-refer to a specialist, but the medical system gets picky about it (for example, they wouldn't let me schedule my own sleep study--had to go through PCP). I guess I am wondering if I should spend the time it would take to get through to a specialist ASAP, or just take it easy, see how the CPAP titration goes, and follow up from there if necessary.

I am really very calm, rational, and pragmatic about most things, especially medical issues, but this has really thrown me for a loop. My mom did not help matters--when I told her about the results, she blurted, "Wow, think about how bright you would have been if you had been getting all the oxygen you need all those years!" Gee, thanks, Mom! And she's a nurse! :shock: (I'm giving her the benefit of the doubt and assuming it just came out wrong. 8-) ) So I guess that in addition to feeling like I cheated death, I also do wonder how my life has been impacted. Which is stupid, because I feel happy and have a great life, so what difference does "what might have been" make?

Sorry for the rant...I suppose that I am seeking advice about next steps as well as reassurance that this is normal...thank you!
Last edited by imsleepyinmi on Wed May 26, 2010 1:45 am, edited 2 times in total.
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Postby rustybadge » Sun May 23, 2010 5:49 pm

Your story is so much like mine it's scary! I'm a 48 yo male, not obese, and failed the 2nd study with cpap. Now for a third study with bipap. You'll be just fine. Be glad you're young and can get help. It's really the long term benifit you're after at this point(my opinion). Think about me, I should be mentally retarded by now the way I figure it. Ha Ha
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Re: Newbie - Alarmed by sleep study results!

Postby Daniel » Sun May 23, 2010 6:35 pm

Total sleep time: 7H 23M
Stage Shifts 97
Arousals 107 (arousals per hour=16)
Latency to sleep: 1.5 min
REM latency: 166 min

Stage N1 Sleep 13.8% of total sleep time
Stage N2 Sleep 68.8% of total sleep time
Stage N3 Sleep 0.00% of total sleep time
Stage R Sleep 17.4% of total sleep time

Sleep Efficiency 90.7%


Sleep efficiency is pretty good at 91%.
The lack of Stage N3 Sleep usually translates to Excessive Daytime Sleepiness. Stage N3 is also known as Slow Wave Sleep, it is your deepest sleep and is the stage of sleep that is most restorative/restful.
The disruption to your sleep architecture is caused by your apnoea events.

AHI=125.1
Mean sleep % SpO2=90
Min % SpO2 = 57
% of sleep time with SpO2 < 88% = 19.1


I would be concerned at your desaturations............particularly the drop to 57%

RDI=125.1
Obstructive Apnea Index=0.4
Central Apnea Index=20.3
Hypopnea Index=104.3
RERAs=0
Additional apneic events during wake epochs: 15
Cheyne Stokes breathing: No
Snoring: Frequent, Very Loud


In your case your RDI is the same as your AHI...........it is often the case that the RDI is higher (usually caused by RERAs). In your case you don't have any.
I think it important that a suitably qualified sleep specialist discusses the nature of your condition with you........particularly the level of Central events.

Interpretation: This baseline PSG demonstrates severe sleep-disordered breathing in the form of obstructive and central sleep apnea, worse in REM sleep. The patient's sleep-disordered breathing was characterized mostly by hypopneas with clear obstructive features, but also by excessive central apneas (not in a periodic pattern). Many of the scored central apneas were associated with subtle obstructive features. In REM sleep, persistent O2 saturation was noted, with the patient's oxygen saturation often remaining 76%-84% due to the frequency of obstructive hypopneas, reaching a nadir of 57%. In the absence of respiratory events, it is also notable that the patient's respiratory rate most often ranged between 9 and 10 breaths per minute, which is borderline bradypneic.


So...have I been killing myself while I sleep? I was not upset about this until I saw the sleep study--I wasn't delighted at the idea of the CPAP, but felt OK with it. I figured that if nothing else, my husband would be happy not to have to listen to my snoring. Then when I read the study...well, I started to feel a little panicky, like I just barely missed being hit by a train. I am a little bit afraid to go to sleep now, which is silly since I've probably had this most of my life.

As far as I know, there are no future plans for consultation or treatment except to attend the CPAP titration in a week. We attend a huge medical system for our health care, which is great in many ways but also painfully bureaucratic at times. I *think* that I am supposed to see my PCP if I have any questions or concerns, but I feel that these results are so severe that I would like to speak with a sleep specialist. My insurance allows me to self-refer to a specialist, but the medical system gets picky about it (for example, they wouldn't let me schedule my own sleep study--had to go through PCP). I guess I am wondering if I should spend the time it would take to get through to a specialist ASAP, or just take it easy, see how the CPAP titration goes, and follow up from there if necessary.

I am really very calm, rational, and pragmatic about most things, especially medical issues, but this has really thrown me for a loop. My mom did not help matters--when I told her about the results, she blurted, "Wow, think about how bright you would have been if you had been getting all the oxygen you need all those years!" Gee, thanks, Mom! And she's a nurse! :shock: (I'm giving her the benefit of the doubt and assuming it just came out wrong. 8-) ) So I guess that in addition to feeling like I cheated death, I also do wonder how my life has been impacted. Which is stupid, because I feel happy and have a great life, so what difference does "what might have been" make?


Important that you go ahead with the titration study. Also important that you get a copy of that report..........and VERY IMPORTANT that you arange to see the sleep specialist that signed off your report. Best to do this after the titration study, as the additional report is important. You should not see your PCP about your SA..........they are not qualified to deal with this.

Sorry for the rant...I suppose that I am seeking advice about next steps as well as reassurance that this is normal...thank you!


Once you attend for the titration study........get an appointment to see the sleep specialist. It is quite possible that the titration study will help to sort things out, but your condition is not straight forward, plain vanilla.........but can be successfully treated. Another week isn't going to make a huge difference.

Best of luck.

Daniel.
The untreated Sleep Apnoea sufferer died quietly in his sleep..
Unlike his three passengers who died screaming !


The first 40 years of childhood are by far the hardest
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Postby imsleepyinmi » Sun May 23, 2010 6:54 pm

Thank you! On the plus side, my new fear of sleeping means that my dear husband and I have spent time chatting & hanging out late at night, and we haven't had a lot of time to just hang out together recently, so that's nice. Besides, I have apparently been courting death in my sleep, so it's probably better for me to stay up anyway. (I *have* slept since getting the sleep study results, but I'm certainly not in a hurry to go to sleep and I jump out of bed in the morning no matter how much I want to go back to sleep.)
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Postby CrohnieToo » Mon May 24, 2010 5:48 am

I would inquire about scheduling an appointment w/the sleep doctor now and schedule it for about a week after your titration study if at all possible. Usually it can take quite some time to get scheduled w/the sleep doctor so you want to try to schedule now. It may be 30 days after your titration study, or 30 days after you get your equipment, before you can get the consultation w/the sleep doctor.

Frankly, there ARE some advantages if it has to be your family doctor who will be writing your equipment order (script). You can usually have some say in just what PAP you want rather than having to try to convince some sleep doctor of which PAP you want.
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Postby imsleepyinmi » Mon May 24, 2010 2:03 pm

So I just called the sleep disorders clinic to schedule an appointment with a sleep neurologist.

The first available appointment is in late October. Five months from now? Seriously?

The lady who scheduled the appointment also said that I "might" have my xPAP machine by then. My xPAP titration study is tonight (there was a cancellation so I was able to move mine up a few days). Does it really take months to get the equipment?

I know that I have survived with this condition for who knows how long, but it is hard to understand why there is all this fuss about how dangerous SA is but at the same time it takes months to see a doctor.
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Postby Janknitz » Mon May 24, 2010 5:23 pm

Holy goodness, those are some serious numbers there!!! It's good that those numbers scare you, because you WILL accept therapy.

I can't believe they didn't slap a machine and mask on you as soon as the report was made--57% is way too low for 02 to go!!!!!!!!! They wouldn't let me go home without a machine when they saw my O2 sat going to 73%.

No way you should wait until October, and no way it should take more than a few days, at most a week, to get a machine once you've been titrated and an rx has been written. Even then, they should arrange a loaner or rental or something to make sure you are covered. Hopefully you will walk out of the titration appointment with a prescription or the promise of one in a day or two.

If not, ask your PCP to write an rx for a rental DATA CAPABLE auto-pap until you can be seen by the sleep doctor. You do have to be careful with centrals, so your titration should be considered in the prescription. Chances are your PCP will have better luck than you talking to the sleep doctor and getting recommendations to cover you until you can be seen. Maybe your PCP can get you in sooner, too. Maybe your doctor friends can pull a couple of strings???

You are living proof that while weight is a risk factor for SA, it is NOT the only cause. You may just structurally have a narrow airway or something else going on causing these apneas.

In any case, you are going to have to be a bit pushy to get care ASAP. Do it--you should not wait until your health care system gets around to it if you want to be around and well for that child and your husband. Adjusting to CPAP isn't easy, but you have some good motivation there :-)

Keep us posted.
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Postby Daniel » Mon May 24, 2010 6:36 pm

Don't go rushing out to purchase or rent any machine until after the titration study.

It is imperative that once it is decided the best machine for your condition (the one that clears all events), get your PCP to write the prescription. I suspect you may require BiLevel/ASV type machine because of your Centrals.

As regards waiting until October...........no way. The guy who signed off your sleep study should see you ASAP..........he has been paid to read your study and should have the basic courtesy of seeing you.

I suggest that you get on to your PCP and get him to arange the appointment ASAP...........after all he refers patients to him for sleep studies and should be able to bump you up the line.

Best of luck.

Daniel.
The untreated Sleep Apnoea sufferer died quietly in his sleep..
Unlike his three passengers who died screaming !


The first 40 years of childhood are by far the hardest
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Postby imsleepyinmi » Mon May 24, 2010 9:59 pm

At sleep study. Tech already said tonight probably won't work because of mixed apnea. Ugh.
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Postby Janknitz » Tue May 25, 2010 12:22 pm

At sleep study. Tech already said tonight probably won't work because of mixed apnea. Ugh.


Meaning what? Did you do your titration study? How did it go?
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Postby parabellum » Tue May 25, 2010 5:37 pm

Wow, I thought my AHI was high at 65....yours is double mine!

I just wanted to drop in here and wish you all the best of luck in dealing with this!!!!!



As to getting seen soon.....if you call the lab and your doctor (and later your DME after the titration study) and tell them how high your AHI is...I'm sure they will find a spot for you.

I got my timeframe moved from 3 weeks, to three DAYS because of an AHI of 65.....so yours should get you seen YESTERDAY.
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Postby CrohnieToo » Tue May 25, 2010 9:53 pm

Daniel, it is quite common in the USA for the patient to NEVER see the sleep doctor who dictates the results of their titration and just sends those results to the referring doctor w/his recommendations for pressure, etc. When first I became aware of that I was disgusted and siad no way would I use a sleep lab that didn't provide consults w/the sleep doctor. HA! I've since come to realize that are MANY sleep doctors that aren't worth seeing or consulting w/anyway.

There are local DME providers who like to "play games" and make like "full data capability" equates to just compliance only data so we've learned the hard way that the script should say "access to Leak, AHI and AI" so the provider can NOT claim any misunderstanding. Since different mask styles have different insurance codes we've also learned the hard way that w/some of the real tight-fisted local DME providers we need to have "full face, nasal cushion, nasal pillow or oro-nasal mask of patient's choice" on our scripts as well.
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Postby imsleepyinmi » Wed May 26, 2010 1:43 am

The CPAP titration did not go very well--I slept poorly, switched masks in the middle of the night, and the tech told me in the morning that at one point she thought she had me titrated but then I started having centrals...she said, "I'm not the doctor so I can't give you specific information, but don't be surprised when you get called back here."

There are other bureaucratic complications I haven't mentioned because they are so mind-numbing, so this morning I could see the writing on the wall and really started to fear that I would get caught up in this crazy bureaucratic spiral and never get this resolved.

I started making calls and politely explaining to anyone who would listen that my case is severe and it's important for me to get this sorted out ASAP. In the end I scored an appointment with the sleep neurologist for Thursday. The sleep lab mentioned in one conversation that they have cancellations almost every night, so I am hoping to get titrated Thursday night and have some kind of treatment plan in place by the weekend.

I have learned that attempted CPAP titration is required by my insurance company before they will allow a BiPAP or ASV-PAP, so even though it was an annoying waste of time and money (since it was pretty clear from my PSG that CPAP would not resolve my central apnea), it seems that was unavoidable.

What remains baffling to me is that neither the person who wrote my PSG report, nor the doctor who signed off on it, thought it was serious enough to bring it to anyone's attention. If I hadn't picked up and researched the results myself, no one would even know. The sleep techs at the lab last night had no idea what my numbers were until I told them. Don't they have copies of the PSG when they to a CPAP titration? It seems like that would be important information.

Lots of evidence these past few days that it is absolutely critical for individuals to be educated, engaged, informed consumers of health care so that we can be our own advocates.

Now I need to prep for the visit with the neurologist--it looks like there are really only 2 machines designed to manage Central Sleep Apnea, so I need to learn about those. I tried nasal pillows and a nose mask last night. I preferred the pillows but there was trouble with mouth-breathing, so I might need to consider a full face mask. I know I can read a lot of information on those topics here.

The other thing I need to do is choose a DME. My insurance covers many in my area and some national companies. Does anyone know about a resource for reviews of DMEs?
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Postby Janknitz » Wed May 26, 2010 12:27 pm

I know you are reeling from all of the stuff coming at you right now, but I think you are doing GREAT! You took charge of your own health and you are being proactive. =D> =D> =D>

Congratulations on getting an appt with the sleep neuro this week instead of sitting in the back seat and waiting til October! That's awesome.

If you can't find any recommendations on DME suppliers in your area, research the machines (understanding that you may need to actually start out on CPAP and fail for a period of time before your insurance will go for BiPAP) and masks you are interested in and then start calling the DME's to see what kind of responses you get to whether they can set you up with your machine(s) and masks of choice with your insurance. You'll quickly smell the rats that try to talk you into lesser or non-data capable machines. Ask about their mask fitting and return policies. If they are one of the big companies (Apria and Lincare) be sure you read what others here have to say about those companies, keeping in mind that your local office may be better or worse.

Finally, mouth breathing can often be overcome. When your optimal pressure is found, in many cases mouth breathing stops. For some, an external aid like a chin strap or mouth taping help. Sometimes you only need those aids for a short time to "train" yourself to keep your mouth closed. So if you are more comfortable with nasal pillows, you will be more comfortable with treatment and more likely to use it. If possible, get the mask you are most comfortable in, and a back up FF mask in case it just won't work.

Keep us posted.
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Postby marlow54 » Wed May 26, 2010 3:33 pm

Hi,
It's really good you're being proactive. You definitely have a horrible case of sleep apnea, and catching it now will hopefully prevent any permanent health problems. Desaturating down to 57% is very severe.
I have sleep apnea and have been using CPAP for 12 years. I am also a sleep tech and have been doing sleep studies for > 20 years. Lots of people have some central sleep apneas sprinkled around at first. Once you're on CPAP, controlling the obstructive apneas & hypopneas, it sometimes takes your brain a little while to get tuned into the idea that you now have enough O2 and that it needs to keep breathing. In a perfect world, people would go home on CPAP and then come back to have another study while using CPAP a few months down the road to see if the centrals have resolved. Typical patients with central sleep apnea have either heart or neurological problems. You sound pretty healthy besides for the fact that you have OSA.
CPAP or BPAP has to be tried first because that is what works for the majority of people. If that truly doesn't fix you, then you need to go the ASV route. Insurance won't pay for ASV unless it has been thoroughly documented that CPAP or BPAP doesn't fix you. ASV is a lot more expensive for them, and also for the patient.
Yes the sleep tech should have had the results of your first study while doing your titration study. Makes me wonder about the quality of the sleep lab. Wish I could have been there. Not to bad mouth any labs, but there are HUGE variations in quality of sleep labs. Also, if you can get used to a nasal mask, you will probably be happier in the long run. Nasal pillows work for some people (I'm not a fan myself, so have a bias) but if you need a higher pressure, which seems quite possible considering your RDI, nasal pillows aren't as good of an option. Pressures greater than 12 cm H2O or so are sometimes uncomfortable to be shooting air directly up your nose via nasal pillows. Also, insurance companies pay for replacement mask every so often, often every 6 to 12 months or so. I've heard of people getting a different sort of mask when they're eligible for a replacement, such as a full face mask to use if they're stuffed up. Good quality masks, and machines, last a long time. My personal preferences for nasal masks are the Resmed Activa nasal mask or the Fisher and Paykel 406 or 407 nasal mask. (number just refers to size, either a medium or large) These are the masks I myself have used for years. They are also the masks that work for a great majority of people that I do sleep studies on.
As far as DMEs go, expect good service. If you call them, they need to respond promptly. If you're having trouble, they need to help you. Don't let them brush you off. Be pushy if need be. It is their job to make your treatment work for you, and it can take some TLC and fine tuning, especially in the beginning. If you are not happy with their service, switch to a different DME and spread the word.
Lastly, there is no way it should take months to get set up with CPAP, BPAP or ASV. A week is typical. Some labs can take care of it the next day. October? No way. Say you fall asleep behind the wheel and get in a bad accident between now and then. Who do you think might be responsible for that?
Good luck with all this. It will change your life. Do whatever it takes.
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