Page 2 of 2

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 03, 2012 7:52 pm
by GumbyCT
Find the money some how some way. You can sometimes find machines for $50.

Do some more reading here on this forum - everything you need to know is here, or post more questions. Check Craiglist list for machines in your area. You want a machine that records data and that software is available for.

Some people on CL want Insurance prices, I think they are DME's or employees making extra cash. Others just don't know what machine they have so you have to be careful and see with your own eyes.
But there are deals to be had.

There is a way to search CL for your whole area of the country too. Be careful with mail deals cuz the machine may not be what you think it is.
http://www.allofcraigs.com/2011/01/crai ... 9vzpa67h&a


The people on this forum are more than willing to help you out. It will help if you signup so people can PM you. It is FREE and no emale spam either. Stick with machine used by the people most willing to help you. If you get an OFF Brand then you will be on your own.

Good Luck and keep us posted.

You are too young to let this ruin your life.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 03, 2012 7:59 pm
by awritersmind1
Ok, thanks. I made a username. I'm not awritersmind1

I have a huge test tomorrow and papers and all this coming do and there's just no energy left... I'm trying to cruise around the forum right now to find stuff.

With this sort of thing, when you sleep, does it make you feel worse? With me, the nights I do get REM sleep are when I feel the worst. They are also when I wake up the most often. The other day I took a nap and I kept having full body tremors take over and it would wake me up while I was dreaming. Someone once told me this can happen when you stop breathing and your body is trying to arouse you. I was checked for epilepsy and all that before because I had one grand mal seizure around the time of a spinal injury so it's not seizures or anything. Happens rarely, though. Mostly it's that when I do try and sleep, I feel horrible.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 03, 2012 8:12 pm
by SleepingUgly
You are only 22. Do you have involved parents that can put some pressure on your doctor? If my kid were in your position, I would call the doctor and say, "Please spell your name for me again. I'm writing this all down, just in case something happens, like my daughter develops hypertension or falls asleep driving a car... 'Refuses to write prescription for CPAP despite REM AHI in the severe range'... Smith is such a common name. What's your middle name? For that matter, why don't you just give me your license number."

If you don't have involved parents, you could try this yourself.

Study for your test. You can surf this forum another time. The information is going nowhere.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 03, 2012 8:24 pm
by GumbyCT
SleepingUgly wrote:Study for your test. You can surf this forum another time. The information is going nowhere.
I agree
But do get yourself a machine. Many times CL is cheaper that some co-pays.
SleepingUgly wrote:For that matter, why don't you just give me your license number."
Again

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 03, 2012 11:50 pm
by lostsheep
I have a similar result from my sleep study - apneas in REM only, with a resultant deficit of REM and deep phase sleep. I do not typically wake up, but my body compensates by keeping me in sleep stages 1 & 2 most of the night. The diagnosis was something like "severe REM phase apnea".

My doctors explained it to me - nice when it works out that way(!) The insurance company covered two sleep studies and prescribed CPAP equipment with no argument. I'm a beginner; tonight will be my 5th go at CPAP.

It sounds like you really need a different doctor - I hope you have a choice. From your own research you've probably seen that the REM dysfunction is being recognized only recently compared to typical sleep apnea. That doesn't mean there aren't health implications, but there is probably no need to panic in the short term. (In my case, I suspect I've been like this for a very long time. My concern is more around the long-term health consequences.)

Try to manage your stress level, take care of yourself as best you can for now, and trust your body (and mind) to adapt while you find the help you need. It sounds like you are going in the right direction

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Wed Apr 04, 2012 6:51 am
by awritersmind1
Yeah, I don't think parental involvement is a possibility right now. I suppose I will have to hassle this place AGAIN. I think they already just think I'm nuts. But hey, I've had tons of docs lie on my medical records (I'm serious here) so why not again?

The reason I've gotten very concerned is the other day while I was driving I like blacked out completely for probably about 2 seconds. It was very strange.

Yes, I see that the REM phase sleep apnea is something newer, and, unfortunately, since it seems to affect women more, I have a suspicion that that influences a doctor's decision to treat as well. When I needed back surgery, I went to about 15 doctors who insisted it was all psychological and "in my head" when it wasn't. I think this doctor was headed in a route very similar to that. Perhaps that is why I am so frustrated that I don't even want to deal with him anymore...

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Wed Apr 04, 2012 7:33 am
by awritersmind1
I lost my train of thought entirely earlier and now I just remembered what it was. Maybe I even mentioned some of this; I don't remember.

With me, as soon as I hit the part of the night where REM sleep kicks in, I'm a mess. It's been taking me longer to fall asleep lately because I'm getting so frustrated. But about 3 in the morning, which is a couple hours after I fall asleep, I'm up about every hour or two, and by time about 6 AM comes around, forget it... But I'm too exhausted to get up seeings how I've only gotten 5 or 6 hours of very interrupted sleep. My stage one was very extended for my two tests. They were in the 20% range (don't have the report this second.) Stage two on the second study was 49%. I think that number is more in the standard range, but I know the stage one wasn't. Stage 3 was about 23%. I have been unable to find the range that number should be in. REM sleep was only 4% on the last study, yet the doctor said my sleep architecture really wasn't that messed up.

I've tried sleep aids in the past, and they make it harder for me to keep breathing. I start having trouble with apneas and hypopeas at other times then, such as when I'm dozing and it wakes me back up, so I know that's a no no to keep me asleep.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 17, 2012 3:04 pm
by chunkyfrog
Your doctor's numbers can be found online.
You might include them when you report him to the state licensing board.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 17, 2012 4:53 pm
by DiverCTHunter
Whoops, forgot to check the date stamps, but my advice applies for anyone else suffering from HMO-sponsored quackery:
awritersmind1 wrote:Yeah, I don't think parental involvement is a possibility right now. I suppose I will have to hassle this place AGAIN. I think they already just think I'm nuts. But hey, I've had tons of docs lie on my medical records (I'm serious here) so why not again?

The reason I've gotten very concerned is the other day while I was driving I like blacked out completely for probably about 2 seconds. It was very strange.

Yes, I see that the REM phase sleep apnea is something newer, and, unfortunately, since it seems to affect women more, I have a suspicion that that influences a doctor's decision to treat as well. When I needed back surgery, I went to about 15 doctors who insisted it was all psychological and "in my head" when it wasn't. I think this doctor was headed in a route very similar to that. Perhaps that is why I am so frustrated that I don't even want to deal with him anymore...
I work in for a medical company, and the fastest way to make a clinic nervous is to bring up HIPAA. Start by making a request for your records, and see what they try to charge you for them. Many places will try to ask for the legal maximum of $2/page. Keep at them and remind them that under HIPAA Section 164.524 (c)(4) the records fee must be "Reasonable" and "cost-based". Document every encounter with them.

If they still give you grief, contact the state medical licensing board and file a complaint. Better yet, if the doctor accepts Medicare or Medicaid (most don't), file a complaint with the state Medicaid office. God(s) forbid, but should you have an accident before he writes your script, tell your insurance company. Their lawyers can use it to shift the liability from your insurance to the doctor's malpractice insurance.

Bring a copy of the law along with you and put a few patient rights fliers up around their office.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Tue Apr 17, 2012 11:23 pm
by apnea2142
isn't stage 3 sleep the important one for your health and hormones and brain function?
my sleep doc said that normal is 5% stage 3 sleep. my REM seems ok on the vpap adapt but my stage 3 is really low and I am still exhausted...

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Wed Apr 18, 2012 2:43 pm
by apiscesmom
Please find another doc! Do NOT let them use "you're too young" as an excuse. Been there, done that and am paying the price for believing it for another condition. My OSA is almost all REM (20 something events in 4 minutes) but my sats dropped to 66% to "prove" it was a problem. The nights I'd dream before CPAP were the worst even though dreaming is supposed to indicate good sleep - I wanted dreamless nights. Don't give up. Get the copies and go see your primary care doc, they can write the prescription even if the specialist won't.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Wed Apr 18, 2012 8:43 pm
by awritersmind1
Hi everyone,

I just thought I would let you all know since there are still responses, that apparently the doctor ended up considering all the articles I brought in and he got me a loner auto CPAP to see how I do. I was really surprised when I got the news.

I seem to sleep soundly now. There aren't the multiple awakenings and maintenance insomnia and all that I was struggling with. Don't really remember my dreams now. I always thought remembering them was an indication that you awaken during them, or at least I was told that. The only times I do now is when I have a nightmare I jump awake from, which hasn't been often lately. I believe it only happens when the auto doesn't cycle up high enough. It's lowest is 5, but early readings from the card show that it has to go up to 12. I think every now and then it doesn't kick in fast enough, but that is rare. I feel much better. Not so sick and hung over and all of that. Still don't have the most energy in the world for someone my age, but the relief I've received in my first week has been great!!

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Wed Apr 18, 2012 8:49 pm
by BlackSpinner
Congratulations. This should prove to your doctor that he was wrong. Hopefully you will end up with your own machine soon.

Cudos to the doctor, however, that he was willing to try something like that.

Re: REM Only Sleep Apnea -- Doctor Doesn't get it...

Posted: Wed Apr 18, 2012 10:20 pm
by avi123
Guest, how do I know that you're not a sleep doctor yourself?