Hi, friends. I'm a newbie. Just got the report of my sleep study today (by being persistent) and am really freaked out. Here it is:

"Recording time: 451 minutes
Epworth Sleepiness Scale Score: 14 (excessive somnolence)
Diagnostic Findings
Arousal index: 100/hr
Respiratory Disturbance Index (RDI), supine: 98/hr, non-supine 0
Respiratory Events: apneas - 4, hypopneas - 338, upper airway resistance events 0, lowest SpO2 saturation 83%
Periodic limb movements index:0

Sleep Efficiency

Sleep Architecture:
Stage 1 sleep 6.4%, Stage 2 sleep 93.6%, Stages 3 & 4 (Delta sleep): 0, REM sleep 0
Snoring: Moderate (4-5)

[/b]Treatment Findings
CPAP toleration: Poor response
Optimal CPAP pressure: not obtained
Recommended mask type/size: FP 431 full face mask - M
Additional equipment: Heated humidifier

Interpretation

Axis A: Obstructive sleep apnea syndrome, severe (780.53-0)
Axis B: Polysomnogram (89.17), CPAP (93.99)

Discussion

The patient was studied during the diagnostic component of the study for 263 minutes with a sleep efficiency of 79.8%. She experienced neither deep nor REM sleep and experienced  a highly severe overall arousal index of !00 events per hour of sleep. Her overall RDI of 97.7 events per hour pf sleep falls in the highly severe range and her low oxyhemoglobin saturation was 83%. No periodic limb movements were seen.

Following the baseline study, the patient was tried on both mask CPAP and Bi-level Positive Airway Pressure (BiPAP) with pressures ranging from 5 cm/H2O CPAP to 25/15 cm/H2O without achieving a clear improvement.  At the final pressure, the attending technologist reported persistent snoring and her index remained severe.

Impression and Recommendations

The patient has severe sleep apnea. It was difficult to control it despite trials of CPAP and BiPAP. Overall it appeared that a pressure of 19/15 seemed to reduce events and correct O2 though no REM sleep occurred. A trial of this pressure with a follow-up study and careful clinical follow up is recommended."


There are a couple of items that really don't sound right. The "moderate snoring" surprised me because I snore extremely loudly -- the technologist told me it was the worst she's ever heard in 20 years' experience. The poor tolerance of CPAP surprised me because I slept several hours with it on and anxiously demanded the mask be taken off my face just when I woke up.

I'm a nurse and know enough and have learned enough from these boards to be terrified by this report.
Right now, I'm interpreting this study as: I have very severe sleep apnea - I stopped breathing 4 times during the night, breathed shallowly 338 times, and have no Delta or REM sleep. I spend almost all my sleep in Stage 2, and even arouse from that every 40 seconds or so,all night long. No wonder I'm exhausted. The study could not control the sleep apnea even with high pressures. Maybe CPAP won't be able to help me and then what? Will I die from this?

.

I demanded to be seen tomorrow. The first MD, who ordered the study, only sees patients on Wednesdays, which is too long to wait, so I'm switching to his partner (also board-certified) in order to be seen within 24 hours. Some questions:

1. Besides listening to him explain the report, what questions should I ask him?
2.  I'm really pissed I wasn't put on CPAP immediately after the sleep study. I definitely plan to ask him why. Although it hadn't been interpreted yet, surely the experienced technologist knew the significance of what was happening. Why didn't she alert the MD that I needed to be put on CPAP right away? Does her failure to do so indicate I should have future tests at a different sleep center and/or switch to a different group of MDs?
3. Do I need to get a copy of the sleep study recording itself?
4. Should I get a second interpretation of the recording by another sleep specialist? (Like a second opinion). The recording was interpreted by a technologist, the chief technologist and my first sleep specialist. Even if I do decide on a second opinion, I'll definitely start CPAP in the meantime.

I'm extremely upset because, in addition to this report, I had a severe choking spell last night. While drifting off to sleep around 10, I could FEEL my throat closing up. It felt as though the roll of fat around my neck was strangling me. I was so disturbed by this that I couldn't get back to sleep til 3:30.

I'd really appreciate evaluations and comments by Dave and other experienced board members. This whole thing has got me scared to death. I'm still stunned by the report and so upset I'd cry, except I'm too tired to!

....



Last edited by another_guest on Tue Oct 31, 2006 10:28 pm; edited 1 time in total

If it were me, I'd request a trial with a specific machine, and I'd settle for no other machine or model for that trial - the Respironics REMstar BiPAP Auto with Bi-Flex.   I'd get the software and card reader for it, so I could see my data each morning on my own computer (needs to be a PC running Windows.)  One week into the trial, I'd ask the doctor to order an overnight recording pulse oximetry test, to doublecheck how things were going O2-wise while using the machine.

The software (Encore Pro version 1.5i) for that machine is a free download at the Respironics software update site:

http://software.respironics.com/cgi-bin/SoftwareUpdates.cgi?page=[Encore]

It takes a special card reader to read the Smart Card that comes stuck in the side of Respironics machines.  Not just any card reader will work.  Cheapest place (about $30) I've seen to get the necessary card reader can be Googled for with the key word 2factors.   The DT3500 USB desktop "sliding + postal".  

I'm not a doctor.  That's just what I'd want to at least try, if I were facing a trial where such high pressures were being recommended.   The "auto" feature of that machine would use only as much pressure as needed throughout the night.  The "bipap" feature of that machine would give relief from pressure when you exhale.  With it operating in "BiPAP Auto" mode, both would be working together.

Thanks, both of you. Sleepyjean, thanks especially for the detailed info on what I need and where to get it. I'll definitely demand the machine you recommend and follow your other suggestions. Thanks for sharing your expertise so generously.

....



Last edited by another_guest on Tue Oct 31, 2006 10:28 pm; edited 1 time in total

Hi MR:
Gad!  Another case of hypopneas that don't respond even to killer pressures!
While you're there, get the titration table and all the graphs.  Absolutely need those.
Any medications and pertinent medical conditions?
The short list of possibilities includes:
1. Additional sleep issues, such as severe PLMs (yeah, I saw the remark), GERD, etc.
2. Severe sleep fragmentation from other causes, such as medication effect.
3. CPAP/BiPAP intolerance.
4. Underlying insomnia (hey, the cutoff is 85% sleep efficiency).
5. Poor titration, or over-titration.
6. True refractory Complex Sleep Disordered Breathing.  But should see apneas instead of hypopneas if that were the case.
sleepydave

Miss Rumphius,

You were smart to demand a quick followup visit with your physician.  
And I agree with the others that they should put you on some sort of cpap machine right away, and I would think a rental until more is understood about your condition.  And I agree with Rested Gal that it ought to be one that records your apneas.  I understand the auto bipap is new and I don't know how good it is, but it does make sense to me that it ought to be used, at least tried, considering they don't really know what titrated pressures will work for you.  Also, those are high pressures they want to use.  I use a bipap with a pressure of 18 and it is most difficult to tolerate.  Others seem to do ok with that pressure, but I did not.  It's hard.  So if there's a bipap that might deliver lower pressures at times when that's all you need, I vote for that one!  

Do you sleep with your head fairly elevated?  If not, you might want to try that before you start any sort of cpap, or maybe even while using it, some.  I know you're concerned about the immediate issues of choking, and I would be too!  I'm sure you will be describing this to your doctor.  But maybe the elevation will help alleviate the severity of the problem temporarily.  We've had people here who were waiting for their doctor visits or even sleep studies and were experiencing similar problems that they were advised to sleep elevated.  Some have even slept in a recliner.  It may help, it may not, but you might give it a try if you haven't already.  

I don't know much about sleep studies, so I do recommend you find out as much as possible, and see if you can answer some of sleepydave's questions.  I know you're scared, and given your situation, I would be too.  Hang in there.  Keep us posted as to what happens.  


Linda

Thanks so much for the recommendations and for responding so promptly. Dave, I'm on a number of meds: Wellbutrin XR, Lamictal and Lexapro for depression; Xanax SR 0.5 for anxiety, Lopressor and Lisinopril for BP; and Lipitor for high cholesterol. I use Aleve for pain (bad back that's flared up). Would any of these explain part of the results? I hope to God I don't have the Complex type of SA. My depression and back pain are complex, difficult-to-treat disorders (breast cancer 3 yrs. ago too).  I'm getting really discourated about my health problems, like there's something inttrinsically wrong with me that I have so many hard-to-treat problems.

One thing I can start on immediately is weight loss, since I'm 100 pounds overweight. It will take a year to lose that much weight, and I'm not sure I can afford to take that time because of the severity of the SA. I will ask the MD whether, under the circumstances, I should get worked up for a lapband.

Linda, thanks especially for your compassion. I cope best with bad situations by getting as much info as I can and reaching out for emotional support. After getting the results yesterday, I posted immediately and spoke with my regular MD, my therapist, and 2 friends. Would you believe my husband had the nerve to tell me I was acting obsessive-compulsive?! He's not a clod, normally very sensitive; his concern is that I'm agitated about the situation (well, duh) and the way he copes with his distress over bad news about my health is to minimize the situation. I've learned he's not the best person to talk with about my fear and anxiety. Luckily, I've worked over the years to build a great support system.  He is there for me in other ways -- being there at major appointments, driving me around, etc.

Hi, Miss R,

BTW, love the book of the same name.

These are observations from an untrained eye:

Looks like almost all of your events occurred while you were on your back. Maybe, in addition to elevating the head of your bed, you can do the tennis ball thing and try to stay on your side when you sleep.

Regarding the snoring: The tech's comment might have referred to the volume of your snoring, while the report description of "moderate" might refer to the duration/frequency of snoring that night. The report mentions it in connection with the final pressure and that might have been a relatively short period of time. I'm just guessing.

As for what it all means, I'll leave that to the resident experts. A bunch of us are out here trying to find answers together so I'll share what I learn and will appreciate any answers you find. I also seem to be in one of those weird, not easily treated categories, although my AHI/RDI isn't near as high as yours.

One thing that's interesting about your study is that you had very few apneas but loads of hypopneas. I know that OSA is based on apneas and hypopneas, but is a hypopnea necessarily caused by an obstruction? It seems the doctor is making that assumption and recommending cpap/bipap even though it's use didn't control the events during the titration. So, doesn't that indicate the hypopneas might be from something other than obstruction?

It will be interesting to see, when you get your full report, how much of a reduction was attained at 19/15. That's a lot of pressure and not easy to get used to. Maybe if you have no obstructions there's an easier way to correct O2 desats?

PS...

Glad to see you can still appreciate your husband even though it's irritating when we're panicking and other people don't see the big deal, at least they don't show it outwardly. He's probably panicking inside. Having a big support group around you is great. I deal with fears by reading about the subject until I'm thoroughly sick of it.

SnoozeHunter,

I cope by learning about it until I'm thoroughly sick of it, too. I'm feeling proud of myself right now because, within 24 hrs. of getting the report yesterday, I've gotten advice from this forum about the study findings, the best machine for me to use, and what to expect from a good DME. I learned from Dave that I needed the actual study graphs and titration table, which I didn't know, and arranged to get them faxed to me today. I also called the coordinator of the local AWAKE group, who turns out to be an RT and the CPAP coordinator at a local hospital. I got her recommendation for the best local DME IHO, and found out that I should have been put on CPAP immediately. I'm seriously considering switching to her sleep center because my current one isn't very responsive and really missed the ball not getting me on CPAP right away. Plus, I love the idea that this CPAP coordinator shepherds patients through the whole equipment selection process and is there to help them troubleshoot. My current center doesn't have a person like that. I feel really well prepared to see the MD today. It'll be interesting to see how he reacts to a knowledgeable, assertive patient.

BTW, thanks for your comment about the Miss Rumphius book. I love it, too, especially the idea that she went around the world creating beauty. I'd like to think I do that, too, mostly by helping people.

Hey Mrs R,

I was wondering if your name was in refrence to that book!!! It is one of my favorites!!!!

Shannon

   Nancy-seems like you are certainly headed in the right direction. Use all the resources and favors you have as a RN. I'm happy that you have a A.W.A.K.E. SUPPORT GROUP IN YOUR AREA-THEY WILL BE HELPFUL. Las Vegas doesn't  even have a group so I'm in the process of organizing one.It's a biiiiiig job.  Remember what I've said before-this forum is a GODSEND and you will get a ton of info and support right here. Talk with you soon. FYI- you had more episodes than me but my pulkse oxi dropped down to 58% during a night without CPAP. I also use the full face mask F/P 431-let me know how I can help.      BARB


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Miss Rumphius wrote:

Plus, I love the idea that this CPAP coordinator shepherds patients through the whole equipment selection process and is there to help them troubleshoot.

That's how my sleep center does it, too. They have an RT who gets the equipment in and helps with the masks and other paraphernalia. She has sleep apnea herself so she's tried most of the masks and is very helpful and understanding.

Hi MR:

Quote:

I'm on a number of meds: Wellbutrin XR, Lamictal and Lexapro for depression; Xanax SR 0.5 for anxiety, Lopressor and Lisinopril for BP; and Lipitor for high cholesterol. I use Aleve for pain (bad back that's flared up). Would any of these explain part of the results? I hope to God I don't have the Complex type of SA. My depression and back pain are complex, difficult-to-treat disorders (breast cancer 3 yrs. ago too).

I think you need a different hobby.

Lexapro and Wellbutrin can create terrific sleep fragmentation and insomnia.  Lamictal can contribute to insomnia.  But don't stop taking them, I don't want you to walk into the Post Office on Monday dressed up in a clown suit, armed with an Uzi and opening fire.

Does bring up the chicken or the egg concept though.  Is this a case of severe sleep fragmentation that the decreased respiration between the arousals is interpreted as hypopneas?  If you weren't getting better even at 25/15, there's sure got to be some reason.

With the O2 desats to 83%, and the snoring by hx., there's undoubtedly respiratory component, tho.  Let's see how much on the graphs.

Let me editorialize a bit here.  There's 84 different sleep disorders.  OSA happens to be one of them.  In some cases a split study, let's go home and get the CPAP started, it's been 10 minutes how come we're not doing this already approach is appropriate.  Sometimes other things may get overlooked or ignored.

You asked if this is a case for the sleep specialist.  I think it could very well be, so keep that door open for the time being.
sleepydave