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Old 03-29-2009, 06:34 PM   #1
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Using CPAP but still tired/not sleeping.

I was diagnosed with sleep apnea a few months ago and I've been using my CPAP, which only has a fixed pressure of 5 (I'm told that's low?) but I'm still tired constantly...I've been going through periods of extreme insomnia where I won't sleep for up to 2.5 days and/or go weeks with sleeping under 3 hours a night. Then I crash and don't want to get out of bed for days. It's driving me crazy...when I don't sleep, I get extremely paranoid, my memory is awful...I forget that I've just done things. Like I'll go to rinse the conditioner out of my hair but there isn't any in my hair and I'm not sure if I've even put it in yet or if I've washed it out...and I'll have to start all over and shampoo again (I've done that at least 3 times recently!) I don't know what to do.

 
Old 03-30-2009, 07:38 AM   #2
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Re: Using CPAP but still tired/not sleeping.

Although sleep deprivation can cause memory problems as well as mood problems, you are still experiencing these problems despite cpap treatment which suggests that your problems with sleep may not be "sleep" related.

Some of the posters on this board have found (after a considerable amount of time and after seeing doctor after doctor after doctor) that their sleep problems were caused by something else...but these people also one or more other issues...examples?

cracking and popping joints
muscle and bone pain (knees and jaw is common)
thyroid problems
sensitivity to cold
sensitity to sounds/light
headaches and migranes
feelings of pins and needles
zaps, jolts, feelings of electricity
problems with balance/gait
bladder and urinary tract infections, yeast infections
ibs, acid reflux
skin conditions, dry, scaley, rashes, acne, constant itching
sleep apnea and other sleep problems

These people found that their symptoms went away or lessened when they were treated with antibiotics for the bacteria b. burgdorferi and/or its coinfections.

If you have one or more of the above symptoms, you might want to consider the possibility as residents of New York are at high risk for this condition.

Last edited by bethsheba; 03-30-2009 at 09:04 AM.

 
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Old 03-30-2009, 12:01 PM   #3
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Re: Using CPAP but still tired/not sleeping.

I have all those symptoms. O.O What exactly is it?

 
Old 03-30-2009, 12:21 PM   #4
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Re: Using CPAP but still tired/not sleeping.

pinkpixies,

There are a few conditions that can cause multi-system (muscle/skeletol, urinary/reproductive, neurological/sensory, etc symptoms). I can't diagnose you but I can tell you that a few of those symptoms are somewhat unique to a bacterial infection b. burgdorferi (Lyme disease) and/or its coinfections...joint clicking and popping, jaw/facial problems, and the electrical/buzzing/humming/vibrating feelings, for example.

ALS, MS, chronic fatgue syndrome, lupus, and a few other conditions that cause multi-systems problems but they can be misdiagnosed as Lyme or Lyme can be misdiagnosed as one of those condtions. Please be aware that MOST doctors are not knowlegable/experienced enough to id and to treat lyme...and we do not have reliable tests.

Bethsheba

PS Out of curiosity, what did your sleep study reveal regarding REM sleep, etc?

Last edited by bethsheba; 03-30-2009 at 12:24 PM.

 
Old 03-30-2009, 12:41 PM   #5
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Re: Using CPAP but still tired/not sleeping.

I slept a total of 2.5 hours in the sleep study and woke up 55 times.

I had an ANA done last year b/c of the protein in my urine and the chronic pain and such but it came back normal. I'm waiting for my ob/gyn to call me back right now b/c I've been having a burning sensation *down there* without infection and it's driving me crazy. It hurts to pee most of the time for months now. I've been using this jelly stuff she gave me to help maintain the ph balance but it's not really working.

Joint popping isn't normal? I've had that for as long as I remember. And I have recently been diagnosed with IBS after a colonoscopy found nothing that would cause the constant diarrhea. I take medication for diarrhea and acid reflux. This is just too weird...

 
Old 03-30-2009, 04:38 PM   #6
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Re: Using CPAP but still tired/not sleeping.

Quote:
Originally Posted by pinkpixies View Post
I slept a total of 2.5 hours in the sleep study and woke up 55 times.
There is a lot more to a sleep study than length of sleep and number of arousals...did you request your results? If so, you should have a document that is 8 or more pages long...and it would contain info about your REM sleep as well as the amount of time in other stages...from what other posters have said, sleep specialists don't glean much if anything from the amount of sleep you report....thus my questions/concerns.

Urinary tract and bladder infections can be common in people with Lyme. I have read that some practioners say 1/2 of their patients presenting with these problems have Lyme disease...for whatever reason, the urinary/reproductive system can be a place Lyme bacteria like to set up housekeeping, but I don't know why.

Quote:
...Joint popping isn't normal? I've had that for as long as I remember.
Joint popping is not normal...although many people report "joint popping and cracking", the only patients that I am aware of that have responded to treatment are Lyme patients. And you might be interested in knowing that Lyme can be transitted to a baby before birth...thus, many people have these symptoms for as long as they can remember.

Quote:
... I take medication for diarrhea and acid reflux. This is just too weird...
If you have Lyme, there may be other things you can do to alleviate your symptoms...but you best check with posters who have been diagnosed with this condition.

But again, we've seen a number of people with your symptoms on this board...and they found their "sleep" answers elsewhere as did I.

Bethsheba

 
Old 03-30-2009, 07:32 PM   #7
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Re: Using CPAP but still tired/not sleeping.

Thanks. I've been going to so many doctors and having so many tests done that basically find nothing wrong...I'm worried to go to my doctor and request being tested for that. LOL I think they think I'm a hypochondriac.

 
Old 03-30-2009, 09:27 PM   #8
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Re: Using CPAP but still tired/not sleeping.

i was wondering if you are having trouble with the cpap? Do you put it on and after a little while panic? When you have it on and open your mouth do you feel the air comming back out your mouth? If so you might have a deviated septum that needs fixed before you can get proper use of the cpap. That is what my problem was and it took me 2 years to find the answer.

 
Old 03-31-2009, 05:36 AM   #9
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Re: Using CPAP but still tired/not sleeping.

Quote:
Originally Posted by pinkpixies View Post
...I'm worried to go to my doctor and request being tested for that. LOL I think they think I'm a hypochondriac.
Most doctors are not trained/experienced enough to diagnose/treat this condition. Lyme patients who've responded to treatment suggest seeing a Lyme Literate Medical Doctor as many have experienced the "brush off" by other specialists, including Infectious Disease docs. If I haven't said it before, I'll say it again...there is no test in existence that is conclusive for Lyme! So you and your docs can't rely soley on testing for diagnosis.

If you do have some of the symptoms I've mentioned, do some serious reading to learn how to separate fact from myth from what we don't know. There are a lot of myths out there and some doctors are perpetuating these myths! Reading some of the posts (the stickies inparticular) on the lyme boards might be a good starting place.

Take care!

Bethsheba

 
Old 03-31-2009, 06:50 AM   #10
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Re: Using CPAP but still tired/not sleeping.

It doesn't bother me wearing it, cept sometimes it digs in a bit on the sides of my nose. The air does come out my mouth when I open it, but I thought that was normal? The lady who showed me how to use it acted like it was normal. I don't breathe out my mouth anyways unless I have a cold.

 
Old 03-31-2009, 09:22 AM   #11
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Re: Using CPAP but still tired/not sleeping.

Quote:
Originally Posted by pinkpixies View Post
... The lady who showed me how to use it acted like it was normal.....
Yes, it is that air pressure that keeps the airways open so we can breath at night. Mouth breathers (like myself) sometimes have problems adjusting but once the reason for mouth breathing (in my case clogged nasal passages) is addressed, therapy is usually effective.

I have no personal experience with deviated septums and cpap therapy...so no comment there.

Bethsheba

 
Old 04-07-2009, 04:14 PM   #12
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Re: Using CPAP but still tired/not sleeping.

My cpap is set at 13.0 which is alot of air i was told that the highest they can be set is 20.0. A setting of 5.0 doesn't sound like much air though.

 
Old 04-07-2009, 05:17 PM   #13
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Re: Using CPAP but still tired/not sleeping.

Quote:
Originally Posted by errs2u View Post
My cpap is set at 13.0 which is alot of air i was told that the highest they can be set is 20.0. A setting of 5.0 doesn't sound like much air though.
Yes, that's a good point....5 is relatively low. I'm afraid that I almost assume everyone has the correct pressures because I use an auto pap which adjusts to my breathing...I range from 7 on up to 13 but I don't have to change the settings on my machine at all. Also, I have a smart card in my machine so my doctors know if my pressures need to be adjusted outside of my current range.

Again, you make a good point...one shouldn't assume the pressure is correct!

Welcome to the boards, by the way!!

Bethsheba

 
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