can apnea cause NO SLEEP at all (newly diagnosed)??

Hi folks, a little bit of background about me:

9 years of insomnia so far. I had a in lab sleep study in 2012, showed I had roughly 5 RERAs an hour, but no apneas. Other than my sleep being horrible where I kept getting aroused, they said no apnea no RLS etc nothing wrong. Only now did I realize those RERAs could indicate UARS, my damn sleep doctor was neglectful for not looking into that more or treating that. Well fast forward to Oct 2014, I was having SEVERE insomnia now, worse than I could ever recall, so I started taking benzo sleeping pills. Well in the end I realized they can be more harmful and helpful and it seemed to be the case. I stopped those pills in June and my sleep was worse off than when I started them. But it's been 5 months now off them, my sleep still has never recovered. I am about to get my TAP, and am waiting on a APAP my doctor ordered in case that doesn't work.

The question I have is this: Do you guys with severe sleep apnea or whatever feel like you sleep? I wonder if it's still not some long term affect of the pills, or something worse. Because everything I've read about sleep apnea, the person can sleep and thinks they sleep, but feel horirble the next time, or maybe wake up a lot during the night, but me? I can go multiple nights without sleeping at all! And make no mistake, I've made peace with my situation about 2-3 months ago. I have no anxiety, I am calm about that because I know anxiety doesn't help. I don't actively worry about getting to sleep at night. But again, I will lie there for HOURS and HOURS without sleeping. This doesn't seem like typical sleep apnea to me where people fall asleep but can't get deep levels of sleep but don't remember waking up.

Did anyone experience something like this before being treated? The times I do fall asleep, I sleep maybe 2 hours 3 at most before waking up and its the same thing again. Once I am awake it's super difficult to fall back to sleep. I also feel like I never reach anything lower than stage 3 sleep, I don't ever reach delta slow wave sleep where you are just completely out with no dreams or so it seems from my prospective. Also how can my sleep be so bad from just mild sleep apnea? When people who have much higher indexes seemingly still are able to fall asleep and sleep more than I. Now I probably bet there are additional RERAs going on besides the sleep apneas since I had them in 2012 and my newest study was home so it can't check RERA's, but still from what I read even someone with severe apnea was able to sleep and believe they slept, so how can my mild cause me no sleep? Could something else be going on? Thanks.

My apnea was called "moderate" in the doctor's notes; (AHI = 13)
I didn't feel like I was getting more than a few minutes a night.
So your apnea does not have to be severe in order to be disruptive.

Sorry I am not quite sure from your wording, just to be clear are you saying you slept but when you woke up you "felt like you slept a few minutes", or you were literally awake and conscience for hours and hours every night not sleeping?
Also how has treatment worked for you then? Fix the problem quite well? What treatment are you using? Thanks for your information chunkyfrog.

just really hoping my experience is not unique and it won't be something else. After struggling so much when the insomnia started, with doctors being useless, to just "dealing with it" for 7 years, then starting to feel like it was improving for about a year (exercised everyday probably helped this), then to hit rock bottom I just want this over with. I'm hoping a lot of people respond and say oh yeah me too, but now I am better. so I can finally have a normal life again.

If I were you, just for now anyway, I'd separate out apnea, UARS, etc. from insomnia. Tackle them separately if only because you supposedly had insomnia prior to the OAS diagnosis (tho' you may never know for sure how long that was). What if you're part of a small but 'valid' group of people who have just never slept very long hours at all and who seem to manage just fine that way (and have been declared healthy by doctors)? They're called 'short sleepers'.

The OAS and/or UARS may have come in more recently and being dx'd on top of the other, everyone's assuming your problems are all OSA related, but they may not be, and I suggest you try to find a sleep MD (neurologist who specializes would be a good place to start) to discuss it with. I'm not saying you definitely have one or the other or none or more (as yet undiagnosed) but thought you might want to consider things outside of where you've been. I think getting off the benzos was a terrific idea though - please don't go back there as there are other meds, if nothing else, that can help if that's where you end up having to go after lots of discussion and research, but messing with those will not do anything good even if they seem to address one problem temporarily.

I have gone to a neurologist, he's performed some tests as well as a brain MRI and EEG, everything appears fine this was in July. I've been to a TON of doctors, both when the insomnia started and as of the past year when it got to the point of being unmanageable. I've gone to an endrochronlogist as well, everything is normal.

Also I was historically not a short sleeper. Up until I hit 21, I could sleep 10 hours no problem, often times 12 hours even in bed if i felt lazy, and if I didn't get like 8-9 I felt like shit. I could fall asleep easily in 5 minutes no problem. Something else that I have come to realize is before my insomnia started, I could and did lucid dream like everyday, it was just part of my normal process for falling asleep. It wasn't until insomnia hit that it killed my sleep. I had a hiatus of about a year, where I was sleeping 6 hours a night in a row in 2013 and felt like it was finally getting better.

But you are right, it could be apnea/UARS is only recent. Historically after insomnia I could still get maybe 6-7 hours a night broken into 2-3 chunks while spending 9-10 hours in bed. This may be normal for some people, but I felt miserable everyday and it was way less than what I was used to. But recently as of June, other than a random rare day, I have been getting 0-3 hours per night non stop. There was a two week period where I slept only 1 hour per night. So yeah. I would be happy to revert to my "normal" insomnia. If the CPAP/TAP can fix my current extreme and just revert to the less severe, which may have other causes. I would be joyously happy. However, if true, to fix that other insomnia I am at a loss since I've been to billions of doctors, at least 3 "sleep specialist" who did nothing but proscribe me pills that didn't work, or hurt me worse off in the end, and no one could come up with anything.

It seems pretty likely that the current horribleness then is apnea related I guess. My blood pressure has gone up as well which I've read is a symptom of untreated apnea. I just wanted to make sure what I was experiencing was not uncommon among apnea people, because I feared fatal insomnia or other serious neurological problems.

Your story sounds very similar to my own. I started having severe insomnia about five years ago. And until my recent sleep study, I felt drained constantly. I gained weight, was diagnosed with high blood pressure, and even had an issue with my liver enzymes. I was diagnosed with severe sleep apnea (I scored in the top one-half of one percent of the most severe cases).

After spending an incredible amount of time on this board it appears as though I am one of the lucky ones. I was prescribed an Airsense 10 Autoset and chose the Dreamwear mask (I posted about the mask in another thread below). I now sleep with almost no disturbances and when I wake up in the morning I am full of energy again. I haven't felt this good in years.

I too tried using pharmaceuticals but they really did not do anything for me. In fact, I was allergic to the Ambien. They don't really cure anything. Good luck to you!

I have relatively mild sleep apnea, but I rarely experience drowsiness or nocturia. You can have sleep apnea without having classic symptoms. It all varies from individual to individual.

I'd like to suggest posting copies of sleep study reports to see if anything stands out to the eyes here. I always wonder when we see discussion of results how representative those results are of a person's real-life sleep. Any report where there is little-to-no deep sleep, REM and/or REM while supine I have to wonder if perspectives are being formed based on insufficient information.

Take case comparisons with a grain of salt. The brain of person prone to hypersensitivity to stimuli may stay vigilant with less prompting than those who are naturally able to sleep through a rock concert. Hopefully your doctor has already checked you for any medical conditions that can cause sleep difficulty. And has medication side effect already been ruled out? Finding answers when they are obscure can be frustrating. Hopefully you'll be able to hone in on what will help you by process of elimination. Good luck.

You've been through a lot, and it has gone on a long time.

sventory wrote:I am about to get my TAP, and am waiting on a APAP my doctor ordered in case that doesn't work.

At this point, why not cool your heels until you get your APAP, and then see what the machine data shows about your breathing? You can use Sleepyhead software to analyze what is going on - https://sleep.tnet.com/resources/sleepyhead . Forum members will help you with the software and analysis.

What model machine are you getting? Just need to make sure it is not a "brick".

Footnote: Gramps and I both have TAPs and find them unbearable and ineffective. YMMV.

Hi Sventory. It sounds like you have what I have, UARS. People with this often have narrow, sometimes recessed lower jaws, or large tonsils blocking the airway. Doctors are just starting to realize that a lot of people with chronic insomnia and certain facial characteristics have sleep breathing problems. To read all about this, you might want to pick up a book by Dr. Steven Park called Sleep, Interrupted. It is estimated that this condition is about 20% un-diagnosed. That is how I found out I had it and linked it to the chronic, severe insomnia I have had all my life.

According to Dr. Park, people with OSA have obstruction - then apnea or hypoapnea, then arousal. But people with UARS have obstruction and then arousal, often without the apneas. The UARS brain detects the obstruction right away, then builds up pressure in the chest to grab the breath. This will often wake you up and you will have a lot of trouble getting back to sleep. The UARS brain will also resist sleep altogether to try to protect you from breathing obstructions. Hence the insomnia. People with UARS can also have a variety of typically somatic complaints and are often being seen by Psychiatrists and taking a lot of psychiatric medications (which make the breathing issues worse), when this is a real physical condition. Also, people with UARS will more often complain about chronic fatigue rather than daytime sleepiness.

I have had this all my life and am just now realizing it. I am hoping that the CPAP therapy can help my insomnia and various other symptoms of UARS like sore throats and headaches in the morning.

a book by Dr. Steven Park called Sleep, Interrupted.

Much of the information in the book is also in Dr. Park's blog - http://doctorstevenpark.com/index.php?s=uars .

PEF wrote:Hi Sventory. It sounds like you have what I have, UARS. People with this often have narrow, sometimes recessed lower jaws, or large tonsils blocking the airway. Doctors are just starting to realize that a lot of people with chronic insomnia and certain facial characteristics have sleep breathing problems. To read all about this, you might want to pick up a book by Dr. Steven Park called Sleep, Interrupted. It is estimated that this condition is about 20% un-diagnosed. That is how I found out I had it and linked it to the chronic, severe insomnia I have had all my life.

According to Dr. Park, people with OSA have obstruction - then apnea or hypoapnea, then arousal. But people with UARS have obstruction and then arousal, often without the apneas. The UARS brain detects the obstruction right away, then builds up pressure in the chest to grab the breath. This will often wake you up and you will have a lot of trouble getting back to sleep. The UARS brain will also resist sleep altogether to try to protect you from breathing obstructions. Hence the insomnia. People with UARS can also have a variety of typically somatic complaints and are often being seen by Psychiatrists and taking a lot of psychiatric medications (which make the breathing issues worse), when this is a real physical condition. Also, people with UARS will more often complain about chronic fatigue rather than daytime sleepiness.

I have had this all my life and am just now realizing it. I am hoping that the CPAP therapy can help my insomnia and various other symptoms of UARS like sore throats and headaches in the morning.

Yes I thought about UARS as well, the jaw doctor who did the fitting for my TAP said my lower jaw is recessed and I should get MMA surgery to fix it so he's not sure the TAP will help that much. That's honestly a last resort, at my current state I'd rather wear a PAP for the rest of my life then get that kind of serious surgery. That would also explain why my OSA is "mild", but I can barely sleep. Since that was a home test I am sure I had RERAs as well that it was missing out on.

What's more frustrating is now at night when I try and sleep my body does all these crazy twitches. Usually my mouth will open and close, or my fingers will move, but sometimes the leg will twitch. Feel like my body is breaking down.

ChicagoGranny wrote:You've been through a lot, and it has gone on a long time.

sventory wrote:I am about to get my TAP, and am waiting on a APAP my doctor ordered in case that doesn't work.

At this point, why not cool your heels until you get your APAP, and then see what the machine data shows about your breathing? You can use Sleepyhead software to analyze what is going on - https://sleep.tnet.com/resources/sleepyhead . Forum members will help you with the software and analysis.

What model machine are you getting? Just need to make sure it is not a "brick".

Footnote: Gramps and I both have TAPs and find them unbearable and ineffective. YMMV.

I have no idea what model I am getting. I just called them again this morning and it seems they didn't even forward the prescription to the supplier yet! So I have to wait for that to happen and them to call me to come in. All I know is I was proscribed an autopap. Care to give more experience on the TAP? Did you have an oral surgeon look at your mouth to see if there will any obvious problems? He said my lower jaw is too recessed.

kteague wrote:I'd like to suggest posting copies of sleep study reports to see if anything stands out to the eyes here. I always wonder when we see discussion of results how representative those results are of a person's real-life sleep. Any report where there is little-to-no deep sleep, REM and/or REM while supine I have to wonder if perspectives are being formed based on insufficient information.

Take case comparisons with a grain of salt. The brain of person prone to hypersensitivity to stimuli may stay vigilant with less prompting than those who are naturally able to sleep through a rock concert. Hopefully your doctor has already checked you for any medical conditions that can cause sleep difficulty. And has medication side effect already been ruled out? Finding answers when they are obscure can be frustrating. Hopefully you'll be able to hone in on what will help you by process of elimination. Good luck.

I will post them as soon as I get home, thanks for the support.

sventory wrote:Care to give more experience on the TAP? Did you have an oral surgeon look at your mouth to see if there will any obvious problems?

I think an oral surgeon is the wrong specialty to be giving advice on sleep-disordered breathing (SDB). I used an ENT who has the equipment to examine the airway, and of course he looks at the jaw structure. He also was well educated and experienced with SDB patients and had done many varied surgeries on the airway. He corresponded with my sleep doctor.

What can I say about TAP? You put a big chunk of metal and plastic in your mouth and try to go to sleep. Worse yet, that chunk is pulling your lower jaw forward. CPAP is much easier and without discomfort once you get the mask sized properly and the head gear adjusted properly.

sventory wrote:What's more frustrating is now at night when I try and sleep my body does all these crazy twitches. Usually my mouth will open and close, or my fingers will move, but sometimes the leg will twitch. Feel like my body is breaking down.

What are your doctors saying about this?

I would definitely start with an ENT who can actually look at your airway inside your throat because TAP may not be the entire solution anyway. I have had both dental appliances and PAP masks and, to me, at least, there is no PAP mask that is more uncomfortable than having something in my mouth. Either one you will have to get used to. More often than not, dental appliance is only part of the solution while PAP will be the entire solution. There are people that use both.

I also have a badly recessed jaw which I think is the main culprit in my UARS. Autopap is my choice because I don't want to have that awful surgery (I can't because I have osteoporosis in my jaw and I believe they break your jaw), and dental appliances won't work because of 2 missing teeth.

My issue right now is that I tend to be a mouth breather and need a full mask. I am having a hard time finding a mask to fit.

Do you know if your mouth will stay closed at night? If it will, you could use a pillow mask which is unbelievable comfortable.

Hi, I'm in a similar boat as you, but I can't blame the insomnia on the apnea as I have been a light and high maintenance sleeper for as long as I remember, but still with stretches with only a night here and there with major sleep problems when something was going on in my life but otherwise usually good and long sleep and I was functioning at work, socially, etc.. For the last 5 years sleep has been much more troublesome, and since the diagnosis in August, sleep has been a fleeting thing, with and without the CPAP (I'm trying to be compliant for the last 11 or so days) , and I wear a FitbIt which confirms that. I haven't tried real sleeping pills (GP has given me several) because of side effects but use an assortment of herbal stuff, none of which is guaranteed to work. Bottom line is for me right now is that I slept better before the diagnosis. Matter of fact, when I saw the doctor to get the results of the report I was feeling pretty good, 7 + hours of sleep a night (the apnea is positional for me so 70% of the night I was getting decent sleep which may be why). This is somewhat of a nightmare, but I'm trying to "be compliant" to see if I get the positive effects I've heard about. I know people who swear by these machines.
I originally requested the sleep study because of the insomnia, not quality of sleep, I am awake in the middle of the night, but the sleep doctor didn't address that at all, just the apnea, get a machine, come back for 2nd sleep study.
I appreciated the comment to separate the insomnia from the apnea. Getting used to a mask on my face and tethered to a machine at night has just added layers and layers to the sleep stress which was never far away in the last few years! (sorry if I sounds complainy but last night I was up for hours in the middle of the night; new here too so not sure if it's OK to chime in when I can't be of any help).