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
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
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
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 ;D
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? :o Anyways... one day at a time I guess.
Thanks again
forest
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
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
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
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
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
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
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
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! ;) :D
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! :D
Patze
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
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"! ;D
Patze
Hi Sassie,
I'm just like you..I have had my machine for a few years and don't use it very often...my doctors are constantly getting on me to use the darn thing. I do use it for awhile...don't feel that it helps me much and then get out of the habit again real fast.
Then awhile later I give it another shot etc etc etc. I have had the pressure adjusted up once or twice after renting a self titrating machine for one month and then they could read the computer printout about what pressure I was using through the night every night.
Maybe I should try it again??? Hmmmmm...if nothing else it would help with my dry nose/sinus' which has been a HUGE problem for me lately.
Btw..I also use the nasal pillows and like them much better than the face mask I first used.
Patze,
So far the pillow seems to be the best for me. I still don't know that I could use a mask becasue of the claustraphobic thing. I don't like anything covering my face. Water, scarves, anything.
Sassie
Sorry to hear about the claustrophobia Sassie, but I had a fear of a mask (had to have emergency operation as a kid, and the thought of a mask on my face used to scare the tar out of me - got over myself really fast! ;) :D); don't have much of a problem anymore, well mostly (there are still some nights...).
Do you find that you have to change your mask every six months or so? I don't know if it's because I clean them 2-3 times a week or what, but they get out of shape within six months, and sometimes earlier.
Keep trying Lynnmarie, I know it's tough, but you can do it! :)
Take care ladies -
Patze
Patze,
No, haven't had that trouble yet. I've had to replace the hose and filters so far. I just clean mine with tap water and a little bit of hand soap then let it air dry.
I'll keep trying to use it, thanks for your advice.
Sassie
Well, I made it through my appointment at the sleep clinic today. They are pretty sure that I have restless legs syndrome, and my sleep study showed a partial airway restriction. I guess it really wasn't a negative study, but not full blown obstructive sleep apnea either. I have an appointment to go back for another night at the sleep lab and they will hook me up to a CPAP machine to see if it helps with my energy levels. My oxygen levels were ok, but they said it was possible that the restriction could be disrupting my normal sleep pattern. Unfortunately my appointment isn't until October! I am going to see if I can get on the cancellation list and get in sooner. Although not a Sjogren's diagnosis, it is something to give me hope that I will find an answer one day!
forest
Good luck Forest! Please let us know how is goes!
Patze
Forest
Best of luck. Sounds like you're on the right road. Too bad that they have to wait clear till October.
Sassie
Forest are they having you take Iron for the RLS??? (restless leg syndrome) I have it quite bad and they have me taking one iron table a day and the RLS is no more!!! If I quit taking the iron for more than a week it comes right back!!! This is worth a try before they have you try any other meds.
Kimi
Kimi, they did send me for a blood test to check my iron yesterday. The doctor wanted to check this before prescribing any medication. I know that I was low on iron after my first surgery, and the restless legs was a lot better after taking the iron. I don't think that I am deficient in iron right now, so I'll have to wait and see what they decide at my follow-up. I was put on the cancellation list for the sleep study, so hopefully I will get in soon and try the CPAP. I am not looking forward to wearing a mask to bed, but excited about the possibility of having a good nights sleep!
Thanks Patze and SassieCat for the replies as well.
forest
Glad you are getting some answers....I hope you get more with your next sleep study! October is a long time to wait....I hope the cancellation list works to get you in sooner...I have used that route often and it works for me quite a bit!
Let us know what you find out! I hope you can get some restful sleep soon....(http://www.freesmileys.org/smileys/smiley-sleep002.gif) (http://www.freesmileys.org)
I was just diagnosed with moderate sleep apnea. I have been sleeping on the recliner in our den since October ( great for my marraige),because sleeping totally supine makes me feel like I am compromising my airway. I have a very severe nasal septal perforation..use saline spray numerous times daily as well as bactroban ointment 3tx daily. I also have dry eyes and ear canals. I use eye lubricating gtts all day and ear gtts daily. Has anyone had good reults with the mouth piece? I am nervous about drying out my nasal passges any more than they already are. Would love to hear back from any one who is using the mouthpiece. Thank God for this forum.......it sometimes is the only thing that keeps me sane. Thanks for letting me share............
Hi Irishgirl,
Let me also welcome you to the SJS World! Please do look around as there are tons of topics and oodles of information that might interest you.
I use the CPAP pretty much every night, and I use the half mask these days (started out with the nasal pillow). I'm awfully tired this morning, but a mouth piece? I don't think I've seen one yet, as the supplier I use doesn't have much of a stock at his store (much more on the website though). On your machine, do you have a humidifier (for lack of a better word :D) attached/combined? I do, and when it gets dry in the house, I crank up the moisture and it does help with the nasal dryness for several hours before it starts getting dry again.
I hope that you feel better soon, and come often as this is a great board with tons of wonderful members!
Take care -
Patze