CPAP with negative sleep study?

[lynnmarie219]

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.

[SassieCat]

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

[Patze]

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! ); 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

[SassieCat]

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

[forest]

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

[Patze]

Good luck Forest!  Please let us know how is goes!


Patze

[SassieCat]

Forest

Best of luck.  Sounds like you're on the right road.  Too bad that they have to wait clear till October. 

Sassie

[Kimi]

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

[forest]

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

[lynnmarie219]

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....

[Irishgirl61]

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............

[Patze]

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   ) 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