Help with Sleep Study Results

[cjk422]

Hello,

I recently had a sleep study to review my 2018 diagnosis of idiopathic hypersomnia. My original neurologist was no longer practicing and I was referred to the ENT who took over his sleep patients. My main symptoms are daytime sleepiness, brain fog, poor concentration and memory, and sleep inertia. I just never feel rested. This new study did not show IH after doing the multiple sleep latency test. My ENT also said that my sleep is normal and there are no issues. I pushed him on this a few times. My AHI is 6.3, but he was more interested in my "respiratory arousal index" of 4. That number seems to only count apneas and ignores hypopneas. I also questioned the high number of spontaneous arousals (index of 31.3). He said they meant nothing.

Digging in to the report, it seems I have an AHI over 10 when sleeping on my back, and next to none on my sides. So I'm working on training myself to sleep on my sides more. I'm also trying to address some issues around nasal breathing, mainly nasal valve collapse. I found the high number of spontaneous arousals as well as my pulse rate to be areas of concern. I'm working on getting a second opinion, but wanted to see if anyone here had any insights. Screenshots are attached. Thanks!

[Expat31]

Hi, 

Your total AHI is at 6.7 which is classified as mild, with the supine element reaching 10.7 supine, however still within the mild  category. The categories are:-

      Mild 5-14
      Moderate 15-29
      Severe 30+

One inportant section I cound not find in the report, was on oxygen desaturation, showing the all important   
ODI (oxygen desaturation index).

My own initial sleep study report indicated an AHI of only 8. The conditions were poor. I had another a year later, turned out to be AHI of 30 ! 

It may be of some help to view the video at the foot of  this present page, just to get some idea what it is all about. 
It starts off fast, but the tempo settles down fairly quickly. You may have to view a couple of times.

[coutherino]

There seems to be a lot of... questionable advice being given by your ENT. I have a few concerns. First off, an AHI of 6.3 is within the diagnosable range for obstructive sleep apnea. That alone means your sleep is not "normal." The fact that they seem to be more interested in an index that excludes hypopneas is very, very strange. Hypopneas disturb sleep all the same, and there is literally no reason to shift the focus away from them in favor of complete apneas. Sleep disordered breathing is sleep disordered breathing.

Following that, I noticed that the sleep lab you went to doesn't score RERA's (Respiratory effort related arousals). RERA's are essentially just a less severe version of hypopneas. You can see the scoring criteria they used for hypopneas in the middle of the page. At least a 30% reduction in airflow for at least 10 seconds prior to a 3% (or more) blood oxygen desaturation and/or an arousal. There's a lot to be said about the strictness with which some sleep labs score respiratory events, but know that RERA's can absolutely be disruptive to sleep as well. What if you only have a 25% reduction in airflow for 10 seconds followed by an arousal and a 2% blood oxygen desaturation? You still had an arousal (you briefly woke up) but that is now no longer a hypopnea, it is a RERA. And what if you're having those all throughout the night? Guess where those events get scored if the sleep lab you went to doesn't count RERA's? Yep, it becomes a "spontaneous" arousal. Perhaps you can see the issue here. 

Spontaneous arousals are a normal part of sleep, and it's impossible to know if improperly scored RERA's are what's causing your symptoms. The number is higher than average, but that doesn't mean much if we don't know how many of those are not truly spontaneous. What I can say is that even without that, you qualify to get a CPAP. Is that the solution? I don't know. But you're having symptoms, and your ENT trying to brush you off by saying everything looks normal is wrong. Like you said in your post, I would definitely advise trying to get a second opinion. 

All I can recommend for now is trying to stay on your side like you have been, as it seemed to make the apneas and hypopneas much better.

[Expat31]

@cutherino

I have an idea that may help to have some idea what is happening now, although you do not have any actual means at the moment of collecting data from the use of CPAP device.

If you can get an oxymeter capable of night recording, this would give you all the basic saturation, desaturationand and pulse data as of currently. 

The calculated ODI will give you an order of magnitude of your sleep situation, and I have read* that there can be a direct relationship with with AHI, not exactly 1:1, but again an order of magnitude.

In my sleep study, my ODI total  ODI was 22/hr, but the breakdown was predominantly supine at 31.9, left with non supine 5.3/hr.

Surprise surprise, may AHI was actually 30.2/hr. Just a fluke perhaps, but the order of magnitude was about right. 

You coulld produce say a week's report of data, then that's a start, something to take to your doctor to review. 

With data in hand, it is better than purely oral arguements.

*If I can find the study of the relationship between ODI and AHI, I will post the link.

[cjk422]

Thanks for the insight. I had the same thought about RERAs and spontaneous arousals. I submitted a records request to try and get the raw study data so it can be re-scored. We'll see how that goes. I'm done with this particular ENT ... I'm not going to fight with someone to have them treat me. I have an appointment with a different ENT, the one who actually did my septoplasty and turbinate reduction in 2015. She's not a sleep doctor, but I'm hoping she can help with any breathing issues and possibly refer me to the sleep ENT in the practice. In the mean time, I'm doing everything I can do improve my sleep. No caffeine after 3pm, no large meals for 3 hours before bedtime, nasal rinse before bed, breathe right strips. I'm working on solutions to keep me off my back, and possibly a wedge pillow to elevate my head a bit.

[Cam12]

I’m in a very similar situation in that I’ve had 6 sleep studies that consistently show abnormal results but my providers continually say “everything is fine”. Then I look at the report details and, no, things are not fine. Examples include: in just 1 of 6 studies did they find ANY N3 sleep (3%) even at age 39; 108 sleep transitions in another; no more than 6% REM sleep in any study; A WASO score that lasted the first 3 hrs when my video shows I was fast asleep and their own report says I feel asleep in 9 minutes. Go figure; etc.. 

Sleep Medicine is still in the dark ages and many, many providers feel comfortable there especially if they just have to sell CPAP machines, adjust pressure every 6 months if needed. Anything beyond that isn’t in their job description. My experience is that they do not have the training to diagnose other sleep disorders or know how to treat them so even if your results are abnormal (outside of obvious moderate/severe OSA), they minimize those results. To make things even worse, they don’t (not one has so far) refer out to other specialists such as movement disorder specialists or neurologists. If you do a web search for normal adult sleep parameters, you’ll find that to this day there is absolutely no consensus about any normal parameters, not even the amount of sleep needed. 

In your particular case, I would have concerns about several parameters but the most concerning thing I see is your pulse rate. It continually spiking to 90-100 bpm is very, very concerning (mine are lower spikes but more of them). Your pulse rate is controlled in your brain stem and there IS something causing these (fight or flight responses). I didn’t see your respiration rate but guarantee that it went up with every one of those spikes, as well as your blood pressure. There are a couple of studies findings that indicate PLMS create these spikes which in turn cause hyperintensities in the brain (small capillary tears leaking blood into surrounding brain tissue). I insisted on an MRI and sure enough, abnormally high hyperintensities. Of course, these were minimized but I got lucky in finding a provider who sees the problem and is referring me to a specialty clinic in Dallas or Seattle. 

Given the BPM spikes + the huge number of arousals and arousal index, I’d guess that you may have a movement disorder such as fragmentory myoclonus/other myoclonus which is difficult to detect because they are barely noticeable - well, they are ignored to our long-term detriment because the AASM “rules” seem designed to minimize them.

I’d suggest seeing a neurologist not associated with your sleep providers org.. I’d prep for it by taping yourself while you sleep at home to see if you are having these movements, most of which if you’re having them, will only be noticeable at 3x-5x speed. For me, it’s the only objective data I have and, not surprisingly, every sleep provider has blocked my access to the RAW data. I’m filing a HIPPA complaint this week.

Bottom line is that sleep medicine is a joke. The fine people on this forum know more than 90% of the sleep providers out there. If you don’t feel rested, trust your gut and insist on other testing/imaging. Sorry to sound so negative but, for me, this is the big-picture reality.

I wish you all the best and hope you are able to find a provider who actually wants to and can help.

[cjk422]

Sorry to hear of your struggles. You're not alone!

I'm so angry that the doctor was so dismissive, and borderline negligent. He didn't even bother to say, "Hey, your AHI is really bad on your back but barely there on your side. Here's some tips for staying on your sides during sleep." I had a great provider (at least in my limited interactions) before he stopped practicing, which is a real bummer. I do have an appointment in December with a sleep neurologist completely unrelated to anyone I've ever seen. Hopefully I can gain some insight there.

I'm mostly concerned about the pulse spikes too. I think that definitely tells a story. There's a podcast from a sleep technologist who focuses on pulse rate over Sp02. Here's a link: https://www.youtube.com/watch?v=auGj35AssRI. I also think you're right about the scoring of sleep studies. Like cutherino said, if you don't meet the strict definition, it's a giant nothing-burger. While I get there needs to be a cutoff somewhere, nothing in medicine is black and white.

Best of luck to you, as well!

[SarcasticDave94]

Here's an idea, take your sleep study to your Primary Care Doctor. Ask him or her if they would order you a ResMed 10 or 11 AutoSet CPAP, humidifier (specify, but note they're built-in all ResMed CPAP and bilevel), mask, and heated hose. The only real thing this doctor needs to do is script this, and do the follow-up within 3 months. Done deal.

It does not require a sleep or other specialist to script the CPAP.

[cjk422]

Thanks, Dave. That's not a bad idea. I do have a good relationship with my primary. I've had the though of just someone give me the script, and I'll take it from there.