first sleep study - complete waste of time? - Yup!

ironhands wrote:Yeah, I meant AHI - I'm a coder, so API comes more naturally when I type

Yeah, I know what catathrenia is - but no doctors I've spoken to yet have ever heard of it. I know that it's not an apnea event, BUT, there are many studies suggesting CPAP therapy works for it, and, considering I wake myself up while doing it, it's a concern. Not as much as not breathing, but it's interfering with my sleep patterns, and those I share a room/apartment with. It's really loud, and embarrassing.

Going by the info I have, it'd seem my results are indicative of narcolepsy (without cataplexy). The depression, massive appetite, lack of wakefulness and incredibly low REM latency all point to an orexin deficiency. Unfortunately, not much can be done other than pumping myself full of stims. I was really hoping CPAP would finally set things right

Looks like no CPAP machine for me this time around. Have to wait another year to be re-tested. I'm certain I would have exhibited more symptoms had I had a better experience at this clinic.

You could get one on craigslist and give it a try.

From the description of catathrenia, it sounds like it is not considered a big deal, more annoying to other people than the person with it. So, even though it may be bothering you, it wouldn't be something that insurance wants to pay for. Thus, the sleep labs aren't going to test for it or diagnose it. That may be something that will change with time. But in the meantime, you can get a used machine and see if it it works for you.

kteague wrote:I wouldn't automatically think narcolepsy...

With a REM latency of 6 minutes, I would.

kteague wrote:It is very disheartening to go through all this and feel like something is going on that just wasn't able to be picked up on the night of the study. Did your study say anything about limb movements? What about arousals? If your sleep is short or fragmented over a period of time, it can do strange things to our sleep. I wouldn't automatically think narcolepsy based on the symptoms you mentioned, as they can also be a result of sleep deprivation. Did you get any Stage 3 sleep in the study?

Yeah, I know, and I was so hoping that this would *finally* be what fixes me. No limb movements, 9 arousals, a 5 from snoring (may have been catathrenia), 4 spontaneous.

stage 3 was 8%, 73% was stage 2.

"Short sleep and REM latency require clinical diagnosis" was one of the comments.

zoocrewphoto wrote: You could get one on craigslist and give it a try.

From the description of catathrenia, it sounds like it is not considered a big deal, more annoying to other people than the person with it. So, even though it may be bothering you, it wouldn't be something that insurance wants to pay for. Thus, the sleep labs aren't going to test for it or diagnose it. That may be something that will change with time. But in the meantime, you can get a used machine and see if it it works for you.

Yeah, but I don't think it's worth investing my own money in if it isn't prescribed, since I could be causing damage.

Catathrenia is usually considered harmless so they don't do anything about it, but for some it can be rough. For me, I used to wake up with bruised ribs from the spousal abuse it created

It's also fracturing my sleep, the same was a spontaneous limb movement would.

Had my consult today.

"No apnea events, so you don't need a CPAP"

Right, obviously.

"Ok so for the snoring you can do lose weight, surgery, or a 2500$ device"

Ok, uhh, don't care about the snoring, did the study mention the catathrenia?

"What's that?"

...

How about the REM latency being <6 minutes? Isn't that indicative of an orexin deficiency when coupled with the appetite/weight/depression and EDS?

"I don't know about that, my speciality is lungs. I don't deal with chemicals."

Wow.... Just wow....

Thanks for all of your support folks, I'll be moving along since CPAP won't be for me
Was so looking forward to sleeping the night through.

Even in Ontario you can get a second opinion. Try getting your family doctor to refer you to a sleep clinic full of neurologists, not respirologists. When my doctor learned that I had issues with my first sleep doctor, she was the first person to mention getting a second opinion, and she sent off the paperwork to a clinic full of neurologists and psychiatrists after confirming with me that none of the doctors in the second clinic were part of the first (all respirologists).

My first study was a huge waste, the therapist was a rude SOB, and then in the middle of the night ( Had the O2 monitor on opposite finger as the rest of the stuff ) and I heard the machine make a bRRRRRRRRR noise and my chest puffed up like the stay puff marshmellow man, and I threw the mask off, he ran in and started yelling at me to put the mask back on, I did not...

I ended up a few months later going to a completely different place, one that used a flex machine and the best guess was the first genius moved the air up too fast and too much,, I didnt have a problem with my second place and slept all night with nasal pillows, which of course were not offered at the time I picked up my machine, they didnt sell that brand, nice,, I just love that all...

ironhands wrote:REM latency abbreviated at 6 mins(60-120 normally).
efficiency 56%
only 10% REM sleep

Sounds like it's not respiratory; I certainly understand the disappointment at having to seek out another solution to your sleep woes!

From the above, it sounds like you could use a neurologist rather than someone focused on SDB, especially given the comment about needing a clinical diagnosis.

Best of luck to you!

Thanks all!

Yeah, it's certainly not respiratory or mechanical. The doctor I saw referred me to someone in the same clinic who is a psych/neuro specialist. I don't know why they referred me to him right away after it was determined there were SOREMS going on. Thankfully, I only have to wait 2 more days, instead of the usual weeks/months.

What I didn't even realize until I got home last night, is that the doctor I saw didn't even mention the SOREMs, if I hadn't received a copy of the tests myself, I'd never have learned of the issue. I don't think he even looked at the entire summary, or the hypnogram.

Going to discuss everything with the new doc, given my history with depression, there might be a single solution for everything.

Tetragon - I know we could get a second opinion consult in Ontario, but, aren't we limited to a single sleep study per year? There's a 2 hour period in mine where I couldn't sleep due to constant interruption from the technician coming in, I don't know how much that may have invalidated the results.

The one-per-year bit is for repeat diagnostic studies, and it's the sort of thing where I wouldn't expect it to be a big issue for reasons unrelated to the tech.

I got less than three hours of sleep in my original study. I still landed a mild (medium, according to my current sleep doctor who went by RDI) sleep apnea diagnosis. I went in for a titration and stayed the day for my first MSLT. The MSLT that you'll probably be subjected to will probably be a very boring experience.

I have a feeling they'll want me to do one. I don't see the point really, I'm tired, always, and I don't think I'll be able to sleep from the stress of being in a new place, and knowing that my treatment depends on me sleeping.

I'd rather just have them assume those results and provide a treatment based on it.

Then again, I pretty much fell asleep during a root canal and tooth extraction.

My head is really heavy right now, I'm sure I could nap if I let myself... Ah well, 2 more days till I hopefully get one step closer to getting this under control.

Are you still in Ontario? Which clinic did you go to?

I'm a newbie to sleep disorders but I have read that people can have sleep apnoea that is present only during REM sleep. If you search Google for "REM-related obstructive sleep apnea" you will find studies.

Have you tried recording your self when sleeping? I actually did this along with a number of other things before having a home sleep study, I bought a second hand Sony handycam 20gb night vision camcorder (DCR-SR35) along with an Infrared night vision led lamp (to increase visibility), it lit up my whole upper body/head/face (only on the camcorder) so I was able to see what was actually happening in my sleep.

I just had a look on eBay.com and it appears that model isn't for sale, the "Sony Handycam DCR-SR45 30GB Camcorder" is which also has night vision and a larger hard drive.
One auction ending within the next two hours: 360719106218

I did, audio only, there were a few gasps, but nothing too serious. It was mostly very loud snoring and catathrenia noises. I'm confident there are very few apnea events in my sleep, and breathing issues are likely due to the excessive dreaming I'm doing. I'll figure it out on Friday, hopefully anyway

The point is to see how long it takes for you to fall asleep and if you hit REM in the naps. And the wiring hookups weren't as bad during the day as they were for the night studies. They removed the wires that weren't attached to my head after I woke up in the morning. And I doubt that any MSLT that you have will be as horrible as my first one, at the clinic that I have since switched away from.

My first MSLT was run immediately following my titration, which was my first encounter with CPAP. The tech was listening to 680 News during my first nap (the radio station has a distinctive sound and a regular time signal). During the later naps, I could hear doctors' consultations through the paper-thin walls. My food was kept in the same tiny fridge as the drugs used in pulmonary testing, and for there to be space, my tech pulled out and tossed multiple abandoned tech lunches. My bedroom was not the same for the night and day portions; my night room had a window and the day room was an interior room across the hall. There was nowhere for me to go except the bedroom and the washroom. I was completely alone, save for when the tech came out of her office to send me to bed or get me out of it. And yet, I still fell asleep in all four of my naps (although officially, I only slept three times as my sleep latency for one nap was 22 minutes).

ironhands wrote:I did, audio only, there were a few gasps, but nothing too serious. It was mostly very loud snoring and catathrenia noises. I'm confident there are very few apnea events in my sleep, and breathing issues are likely due to the excessive dreaming I'm doing. I'll figure it out on Friday, hopefully anyway

Good luck for tomorrow .