CPAP with negative sleep study?

[forest]

Has anyone had a negative sleep study, but were put on a CPAP anyways? My wife has heard me stop breathing during the night, but my oxygen levels were normal during my last study. I was told that I may still benefit from a machine, so I am going into the sleep clinic to discuss it with them. I am wondering if anyone else has had this problem, and if it helped them with the fatigue.

Thanks in advance...

forest

[Patze]

Hi forest,

I use a CPAP machine, but I have sleep apnea, obstructive apnea, and my oxygen level sometimes drops for no particular reason.  I don't know if you need one or not, but can they maybe repeat the test?  Maybe use a different facility?

Please take of yourself and keep us updated, okay?

Patze

[Kimi]

I have a CPAP too but I also have sleep apnea. I do think us Sjogren's people can benefit though from the moisture from the humidity part of the CPAP. I know I could not sleep most nights with out it as my throat and mouth get so dry it sticks together and wakes me cuz I can hardly breath.  Maybe this is  why they think you would do well with one???

Kimi

[irish]

I don't have much sleep apnea etc but I do have episodes where when I enter my REM sleep I will arouse some but not totally wake up. Doc says doing this over and over deprives a person of sleep and makes them feel awful.

Try the CPAP and see how you feel after a month or so. You may be surprised. Irish

[forest]

Thanks for the replies. This was my second study, with the first one done several years ago which showed borderline sleep apnea. It sure helps to hear what works for others. I suspect they will have me in the lab to try one out, but I'll have to wait and see. I was pretty surprised to hear that my study was normal, but then again everything seems to be "normal" for me. Perhaps what I feel is normal... and at 5pm everyone's body shuts down?    Anyways... one day at a time I guess.

Thanks again
forest

[Kimi]

Once you get use to the mask you'll find you don't even want to take a nap with out it!!! It did take me a good 6 months to really get use to it but now, after 5 years with it I will not be with out it! I feel so much better plus the moisture form it helps so much with the SJS! Good luck and keep us posted!

Kimi

[forest]

Thanks Kimi. I thought that the moisture might help as well, so that is a plus. I have heard that the machines can really change the lives of people with sleep apnea. Do you still feel fatigued from SjS even with the CPAP, or does it help with the fatigue? The only way I can describe my fatigue, is around 5pm my arms and legs start to feel like they are made of lead. I have to push myself to do something like get out of my chair and walk across the room. I just don't have the energy. I'll also let everyone know how I make out with my appointment on May 28.

Take Care
forest

[TerriJ]

I had a sleep study done and the only thing that showed up were a lot of alpha intrusions.  I think that might be what Kimi was referring to when she was talking about disruptions in REM sleep.  Anyway, they said I had no apnea.  In the last 6 mo. I have had two episodes of waking up choking with my air supply cut off.  It's scary.   I didn't exhibit any of this in the study though.  It is doubtful that my insurance company would cover a machine without a positive test. 

Have any of you ever had the choking experience and had a negative sleep study or not been diagnosed with sleep apnea?

Forest - I hope the CPAP helps you!!!  That would be great.

Terri

[forest]

Hi Terri

I don't think remember choking while sleeping myself. My wife has heard me stop breathing many times long enough that she wondered if I was still alive. I also snore really badly as well. I hope that there is something on the sleep study that can explain things. Perhaps I do keep waking during the night long enough to disrupt my sleep pattern. I feel like I am in a deep sleep, but wake up tired and always have dark circles under my eyes. Not sure if this is part of sjogren's, or maybe I have multiple things going on.

I am concerned about insurance not covering my machine as well. I know that it is covered, but I am not sure under what conditions.

Scott

[Kimi]

Under my insurance it is considered a durable medical divice. So I have to pay the first $250 each year for anything that comes under that heading and then  it is 80/20 after that. Stinks for sure. But with the CPAP machine itself, that usually only needs replacing at the soonest every 5 years. My dad had his first one for over 10 years but the Dr wanted him to get a new one as they could not get filters for his old on any longer. 

Kimi

[SassieCat]

Hi,

I've had my machine for a couple of years now and still can't get used to it.  I've had the pressure turned down and have tried different masks.  I toss and turn so much because I ache and I think the tossing keeps me awake enough to know there is something on my face.  During the winter I can sit and read with it on and it feels good.  But when I fall asleep I find it's on the floor by morning.  A few times I even found the mask in pieces where I must have torn it off while trying to sleep. 

I suffer from claustrophobia and I think that doesn't help that I don't like things on my face either.

Good luck if you find one helps!

Sassie

[forest]

Kimi, I am glad that your dad has had good luck with his. For the cost of the machines, I hope they will last for a while! Like everything else, I guess they can only support a product with replacement parts for so long.

Sassie, sorry that you have had rough luck with keeping your CPAP gear on. I flip from one side to the other quite often as well, so I may have the same problem if I end up with a machine. I hope that you can find a way to make it work for you.

My appointment is Thursday afternoon. I didn't realize that the appointment was sneaking up on me this quickly. I look forward to hearing what the doc has to say about my sleep study.  This appointment has become a bit more important, since my internist is considering sleep disorders and depression as two possible alternatives to a Sjogren's diagnosis. Since my sleep study was already negative, and the anti-depressants are doing nothing for my terrible fatigue, I think a sero-negative Sjogren's diagnosis makes more sense. Hopefully I can at least get a referral to a rheumy if the internist can't give me an answer or get a lip biopsy done.

Scott

[Patze]

Hi Scott, I feel your pain!  Being sero negative is nuts personified!  I wish the researchers could find another "flag" for us negative folks; it would make life so much easier.

Hi Sassie, I know what you mean about fighting the mask.  It took some time of fighting the mask before I finally got used to something on my face.  I started with the nasal pillow and now use the half mask (and the whole one when my sinus's flare).  I've scared myself a couple of times by looking in the mirror before I take the mask off.  Whew, talk about looking like I have a face hugger on!

Hang in there and hopefully it'll work out for you.  You probably have, but what does your doctor say about this?

Hi Terri, have you asked your insurance company wether they will cover the machine without a positive test?  Or pay part of it maybe?  I know there are some companies out there that will rent the machines out on a monthly type basis, can you call some medical supply companies in your area and see if will rent one to you?

Hi Kimi, I do love that my nose/sinus's are not so dry (during the summer that is; during the winter it's still miserable once I'm up for the day).  I know what you mean about having to pay out of pocket!  But it seems to help with the sinus inflammations, I have only 4-5 a year now, instead of the usual dozen or so.

It's great to hear that your dad's had his for ten years!  Keep on rolling dad!


Patze

[SassieCat]

Patze,

Thanks for the laugh, I'll have to look in  a mirror now just out of curiosity.  I started with tubes that you put in your nose.  But it kept falling off and bugged my ears wearing.  Then a few years later I did another sleep study in a different hospital and they tried the pillows and another one that connects to a small cylindar and has pillows on it.  The last two are the best so far.  I can wear either of them while reading.  Some days preferring one over the other.  The second  hospital also turned down the air pressure too. 

I keep struggling to wear it every now and then.  Sometimes I just forget to put it on.  A few times I actually slept all night with it on and felt better in the morning. 

Does your nose hurt from wearing the pillows.  Mine does, but not for long.  It is just something I have to be more diligent about using.

Sassie

[Patze]

Hey Sassie,

The first few times that I tried the nasal pillow, wow, I thought my nose was going to go on strike!  It hurt, but the more I used it, the less it hurt to a point where the pain was mangeable.  I'm a tosser, and it would often come off and my eyes got tired of being hit with a sudden blast of air in the middle of the night.  I finally couldn't take it anymore and went to a half mask.

The mask that I use now has a device that will move me during the night so that's one last distraction I have to worry about (it's a plastic rope like device that connects both sides with the strap).  Do you prefer the nasal pillow?

Hang in there fellow CPAP "sufferer"!

Patze