Hi.  I'm a 43 year old female.  Diagnosed with obstructive sleep apnea for about 3-4? years or so.  Got a CPAP machine.  I never noticed any miracle with alertness but I was doing ok though still fatigued.  I started a new retail job and it's very physical so I figured the fatigue was also a part of that.  In May I started dozing on the road.  I actually felt myself drifting towards the median.  That scared the hell out of me so I went to my doctor and got a physical plus bloodwork.  I've been sick a lot with bronchitis and sinus infections. My doctor put me on a medical leave from work (my work is about 35 miles away).  He said my bloodwork looked ok.  I have hypothyroidism but he said everything looked ok there and continue on the meds.  I'm having problems with my stomach so he sent me for a test and I do have GERD and am on meds for that.  At any rate, my CPAP machine quit working and the company fixed it for me. I think mine is a Respironics (don't know the exact model). Meanwhile I got to test a new CPAP machine.  I've been using it for about 1 1/2 months. It's a REMstar auto with C-Flex.  Since I have allergies and sinus issues I use a full face mask I have an Ultra Mirage.  Ok.  There's the history of me now here's the problem.  My sleep is worse than ever.  I'm using the auto with humidifier and I need a sleep med to get to sleep (I use Ambien).  Then my arms jerk and my legs jerk as I'm falling asleep and during sleep. I also experience arm and leg jerking when I'm awake.  I have nightmares and often bolt straight up in the bed.  My concentration is horrible, my moods are horrible.  All I want to do is lay down.  I have no energy at all.  I have a consult with a sleep doctor on Sept 8th.  He will probably do a new sleep study.  Is anyone experiencing this symptoms?  I'm barely functioning.  I'm applying for disability because I can't concentrate let alone have any energy to do a job.  I wake up and am totally out of it.  Then late at night I'm wide awake and need sleep meds to lay down.  Any help anyone can give me would be greatly appreciated. I feel like I'm going insane.

Hi,

Wow.  Sure sounds like a big problem.  I don't have any answers, though others might, I don't know.  You may well need another sleep study.
Do you have the report which gives the results of your original sleep study?  If you do have another sleep study, be sure to get a copy of the report.  That will provide you with a lot of information, and if you share some of that info here, there are people who might help you understand some of it.

You seem to have many of the symptoms of sleep apnea.  But it's odd it should worsen once you started with the newer machine, the auto.
Also, are you  happy with your regular physician?  Is he aware of these latest symptoms?  The jerking of the arms and legs while you are awake concerns me.  The restless leg syndrome is common for many with sleep apnea.  But you should be getting your entire health checked out for these things as well, in case it's something more.  Have you ever had any heart problems or high blood pressure?  If so, you might want to get checked out by a heart doctor, just to be sure you are alright.  I know you are getting scared.  Hang in there.  Let us know how things are going.  Please stay in touch.


Linda

Hi There!!

You sound like me!  I just had a sleep study done Friday 'cause my doc. insisted I come in to the office and then we decided there were just too many variables so a sleep study was in order.

First, this has to be determined during a sleep study, but it sounds a lot like you have Restless Legs Syndrome (RLS-what it is called if you are awake) and Periodic Limb Movement Disorder (PLMD-what it is called if you are asleep), so do I.  It is worse if you are anemic, so while they are turning you into a pin cushion, have them check your iron levels and do a Complete Blood Count (CBC) for anemia.  I take a Parkinson's drug to keep my legs still and the sleep study confirmed it is still working.  As you know jerking around disrupts your sleep so you don't get quality sleep, just like with apnea.

Second, hypothriodism causes apnea-like fatigue so make sure it is being adequately treated and your thyriod med. is working (i.e. normal levels of thyroid hormones), oh never mind, you said it was OK.

Third, I got flamed for saying this on another forum, but my doc. despises Auto PAPs because the algorithms aren't perfect and can spike high pressures which cause arousals.  I was using another brand of A-PAP and he proved to me during a sleep study that it was waking me up- a lot.  I got ahold of a RemStar and wanted to see during my recent study if it was waking me up but he wouldn't even let me bring it in.  I'll come back to this in a minute.

Fourth, if your pressure is around or over 9, an Ultra Mirage full face mask cannot hold that pressure and will leak.  The sleep tech said they make a farting sound, I prefer to say it honks.  I've been honking for a year, which, um she says sleepishly, has been waking me up a lot.  I have switched to a new mask on the market, a FlexiFit 431 which is very comfortable and doesn't leak at my higher pressure.  I had the most vivid and colorful dream I had since the last time I was in a sleep lab.

Fifth, if your apnea is not being treated, it is very common to not want to go to sleep at night.  It is a subconscious thing, your body doesn't want to be suffocated!

Back to the above paragraph, nobody tell my sleep doc. (I'm setting a really bad example aren't I?) but I think I'll try my RemStar a night or two with my new mask so I can have the data card analyzed and compare the RemStar before and after my new mask.  I'm following my docs. orders though and going back to my CPAP.

Sounds like you need the sleep study 'cause I don't think you're crazy.  Let us know how all of your issues turn out!

Vicki

Good advice Vicki.  No flame here at all, but one thing that might give some people difficulty with an autopap is having the pressure set too low below the prescribed single pressure.   Some do fine with a rather wide range, with the low set as low as they feel comfortable breathing at.   But many, including me, have found that an autopap can give them smoother treatment if the low is set very close up to, or even at the prescribed single pressure.

What would be the use in having an autopap at all then, if one isn't able to take advantage of setting the low pressure of the range really, really low?

For me, it's the ability to set the higher pressure 4 or 5 cm's above the titrated single pressure.  Gives a nice bit of mostly unused margin up there that the machine can use if needed.   Gives the assurance of knowing that if conditions change temporarily on some nights, conditions perhaps requiring a bit more pressure -  a new med, more stressful day, heavy meal or celebratory drinking, more exercise than usual, allergies, congestion - the autopap can handle that.   Or even if a more permanent change creeps in like weight gain or saggier throat tissues with age,  one is using a machine that is automatically adjusting when a notch or two or three more pressure is needed.

I think a lot of the distrust some doctors have for autopap behavior arises from two things:

1.  earlier autopaps that didn't "behave" as well as more modern day machines do.

2.  setting the pressure range too "wide open" for many patients instead of a narrower range with the low set close to or on the titrated pressure.

As you pointed out, Vicki, even if the autopap works best for a few by switching it into cpap mode and really using just one single pressure,  it is two machines in one - can be run in either mode, as an autopap or as a cpap.  Very versatile and worth having, imho, as opposed to a single straight cpap that is...just that.  

Having the software, as you and I do, Vicki,  to examine an autopap's overnight data certainly is a good way to be more of a participant rather than just a "patient" in this kind of treatment.    

Hi jt!
Yeah, that's a bundle.
Let me say that it's important to differentiate "sleepiness", lack of sleep or quality sleep, and "fatigue" or "malaise", which may relate more to another underlying medical issue.  Certainly a sleep study will be able to better differentiate between the two, but the point I want to make to everyone is, if you still don't feel right after the sleep issues are all addressed, don't simply accept that, keep pushing till you get satisfaction.
That said, I certainly hope that it's a just a CPAP adjustment or some treatment of PLM/RLS symptoms, and you're absolutely on target with the new sleep study, seeing additional specialists, whatever it takes.
In the meanwhile, as Linda mentioned, if you find the old results, when you get the new results, and if you can get the results of the AutoCPAP activity (either in printout or file form) and would like to share them, please do, we'll try to help as best we can.
Hang in there till then.
sleepydave

Consider exploring your thyroid medication dosage.  There are a lot of people who believe the traditional blood tests for thyroid don't provide a clear view of your thyroid function.  Many are suspicious of the T4 only medications (Levothyroxine) and believe hypothyroidism should be treated with a combination of T3 and T4.  Look at http://thyroid.about.com/ for some discussion.

Also look at saliva testing for thyroid levels.  Some think it's voodoo, but other physicians are impressed with the results.  Look at http://www.diagnostechs.com/main.htm.

Good luck!