Apnea Misdiagnosis?

[Eradicator]

I'm here for info and like many here, I'm pulling hair out trying to get more than 2hr sleep a night.

I began the insomnia 4 months ago and did a At Home Sleep study to wit they decided I have sleep apnea. That was 3+ weeks ago and they still haven't found a responsive company to get the machine shipped to me.

I question the whole deal because I setup a Trail Cam in my room a week ago and what I found was truly scary. From the time I fall asleep to the time I wake 2-2.5 hrs later, the camera is taking well over 150 pics. Typically, there is one 40 minute period of no moving, other than that, I toss and turn every minute or two. This doesn't happen if my GF sleeps with me nor has anyone else ever reported that I toss & turn so I'm only doing this when sleeping along.

Does this sound familiar to anyone?

I'm getting very disappointed with the fact that if I don't advocate for myself, I'm screwed.

Erad

[ChicagoGranny]

did a At Home Sleep study to wit they decided I have sleep apnea

What were the results of this study? Do you have a copy of the summary page? Give us some details.

That was 3+ weeks ago and they still haven't found a responsive company to get the machine shipped to me.

Who is "they"? Are you buying the machine with the use of insurance or self-pay? Which country are you in?

I'm getting very disappointed with the fact that if I don't advocate for myself

This is a start!

[D.H.]

Yes, pleace attach a copy of the study, or at least a summary. Surely, to diagnose Sleep Apnea, they need to have detected Apnea events (at least five per hour per the current clinical guidelines).

[Eradicator]

Thanks guys for the responses. I'm so new to this "process" that I don't even know how much I don't know yet.

I am picking up the Sleep study results or summary this afternoon from my Dr office so I will be able to post tomorrow.

When I spoke with the girl at the Sleep study firm, she noted that the telemetric data showed I had several "breathing sensor faults" per time period, usually 1.5-2hrs. She said that I needed to reset the sensor, check connectors and rearrange placement of the nose tube each time the fault displayed. I explained that I'm receiving HD meds to sleep so when I'm knocked out, there is no one to reset their machine. She had me wear it 3 nights because they were trying to get an accrued 6 hrs on record. They made the determination that I suffered moderate sleep apnea. Since the picture record shows that I'm moving nearly non-stop while "sleeping", I would hate to think how bad it would be if it were a severe case!

FWIW- the 150 or so motion-activated pics in a 1.5 to 2hr period is the same # whether I take the sleep med or not.....I'm very confused how apnea can cause that kind of hyperactive motion but that's why I'm here asking you guys.

The "they" is the Dr office who is trying to find a supplier. USA... and well insured to answer the other questions.

I do appreciate your help guys!


erad

[ChicagoGranny]

I'm receiving HD meds to sleep

Which meds, dosages, times?

I am picking up the Sleep study results or summary this afternoon from my Dr office so I will be able to post tomorrow.

Also, get a copy of your script. It's your right by law. We need to know what the script says and exactly which model machine. Some doctors are still prescribing unsuitable machines (bricks).

[kteague]

I understand your concern about the accuracy of your test results, considering the lack of sleep and sensor issues. Do consider that had you slept more it may have allowed for even more events. Is there any chance of you getting a lab study, one that also has your legs wired? Some people move about when they have apnea events, as the body is struggling to breathe. In a lab study they identify those movements as respiratory related. Some people move about a lot when they are in a state of restlessness or agitation, and this can be caused by any number of reasons. Some people experience what is called Periodic Limb Movements. These movements will be somewhat stereotypical in appearance and rhythmic in nature. You are in hard place. You don't really have enough information to know where this is going. There is always a chance that treating your sleep apnea will resolve much of the moving about. Once you get settled in with your CPAP treatment you might want to record yourself again to see if things have settled down.

[jennmary]

Your movements might be an entirely different sleep issue. That doesn't mean you dont also have sleep apnea. Your girlfriend is presumably asleep when she is sleeping with you.....so she may not notice that it is happening. Set up the camera with her there. Confirm. Dont trust another sleeping person to tell you what is happening.

If you did poorly with the at home test I do not understand why they have not sent you for a study in a sleep center.

[Eradicator]

Again, I appreciate the help to a stranger. I posted the Sleep Summary and the lab results for those of you smarter than I am concerning these things for your candid opinion. Kind of looks more cut & dried than I THOUGHT it would but I'll save my opinions till I hear from you guys, because you guys know and I'm only guessing.

Also, my baby would notice if I moved at all but the advice to set up the cam when she's there is solid. She's very attentive in her own bed at her home and in mine, it's a waterbed but it wouldn't matter since I usually hold her close all night, unless she's having a hot flash and needs to roll over to cook off some steam...but she comes back once she's comfortable but pic proof is irrefutable. She has told me that I stop breathing while I'm asleep, even when I was sleeping normally for 8 or 9 hours at a time. She said it seems so long that she will shake me occasionally. I heard her but as I honestly admitted, didn't listen. The labs bear her out but taking the advice of running the cam with her there is solid. I have not asked her the obvious question though(another case of failing to connect the dots) and that is, "did the apparent stopping of breathing episodes change since this insomnia began 4 months ago?" I'll be sure to ask that this morning!


I can go on but I'm really interested in what the consensus from you guys is........that's the entire reason I'm here, like any of us, to learn.


erad

[ajack]

If you have another reason besides sleep apnea, why you stop breathing 12 times an hour, for up to 2 minutes. I'd like to hear what it is. Do you think you are in denial? It's not that uncommon at first. You will get your head around it.

[Julie]

I would have wanted to see, in the results, what percent of the time you were on your back (which promotes many more events) and on your side and most labs give those results - you might ask why yours didn't. If you think you back-sleep most of the night, you should try to find a way to not do so, either by (temporarily at least til you get in the habit of side sleeping) wearing e.g. a backpk with pillows, a foam wedge in behind, something to keep you from flipping onto your back once asleep. If the lab, e.g. had found that the majority of your apnea events took place while on your back, you might not even have scored high enough to need a machine once the issue is addressed, so I'd talk to them and see if they got those results (tho' i doubt it or it would have been noted). You might, again, once your habit has really changed, ask for a new study to see how it comes out.

[ChicagoGranny]

I'll save my opinions till I hear from you guys

Reading your sleep summary, it's simple ------> Get an APAP and use it. Hang out here for help in getting your CPAP process optimized.

While you are waiting on your machine, avoid sleeping on your back. This may give you a little relief. OSA is usually worse when backsleeping because gravity is directly pulling the tongue and soft palate into the airway.

[ChicagoGranny]

I would have wanted to see, in the results, what percent of the time you were on your back (which promotes many more events) and on your side and most labs give those results - you might ask why yours didn't.

It was a home sleep study. There are no positional measurements.

[Eradicator]

You guys are really super.

Yes, ajack, de-nile isn't just a river in Egypt. I'm terrified because I don't like things touching my face while I sleep.

I'm waiting to receive a machine or fitting or whatever.

I NEVER sleep on my back. Generally it's on the right side but never on my back and the photo's confirmed this.

I had imagined a "condition" where I could address the tossing & turning alone and be able to sleep throughout the night again....yes, I was fantasizing I suppose. I wanted it NOT to be S/A because of that face touching phobia but after reading a bunch of posts where you guys helped others see that embracing treatment wrings the best results....so I'm trying to get "up" for this.

Lastly, when I stopped at the DR yesterday, we talked about the Belsomra dosage. He suggested that I double the dose & take 2- 20mg tablets at the same time. I took both at 4:30 last evening, fell asleep by 6 or so and woke at 10:30PM....4.5 HOURS!! I took it very early since I needed time to "get it out of my system" before I leave for work at 5am. Yes, I've been up since 11 last night BUT I got more sleep than I have in nearly any two days since Thanksgiving!!

This has been a life-changing & debilitating event....and I'm pretty much toast at this point. I'm just biding time till the machine comes in then if I need to take a few weeks off, I will. I just didn't see any point to taking time off without a specific plan for getting "better"

I'm fairly well educated so upon reading the report, I instantly knew how bad it really was. As much as I'd like to fool myself, I saw what you all saw....Yes I have a real problem but yes, there are also solutions.

Thanks again guys....this has been a lot of help!!

erad

[zonker]

congrats, eradicator! you've come to the right place for help. your attitude is positive and that's a big step in helping yourself.

your journey has just started, though. please come back here (and by HERE, i mean to this post.) and keep us up to date once you get your machine. you are going to have a lot of questions!

as to the mask-this is, i think, the hardest thing to get used to in therapy. pugsy here has referred to it as "the alien on your face"! true that. it takes some adjustment to relax to the piece of plastic resting there. even though you KNOW it's to improve your health, your brain takes some convincing.

when you first get your mask, you may want to take some time wearing it while not in bed. say, during the evening while watching tv. that can help you get used to it.

in any event, good luck!

[ajack]

I would have wanted to see, in the results, what percent of the time you were on your back (which promotes many more events) and on your side and most labs give those results - you might ask why yours didn't.

It was a home sleep study. There are no positional measurements.

some do positional, my home study did.