Help

Hi! I am a 60 year old woman who has been diagnosed
> (sleep center evaluation) with severe apnea. The report, per doctor who read it, is not clear whether it is obstructive or not.
> E-N-Throat doctor says there is no clinical evidence
> of OSA, but I do have a wicked deviated septum
> (which he says has never been shown to have any
> relationship to apnea). I am getting a second
> opinion on that next week. Truthfully, apea
> (non-obstructive) scares me even more than OSA.
>
> My problem is that I have not been able to accept
> CPAP in the eight weeks I have had it. Problem
> areas: mouth fills up with air while I am asleep (and can't control) and awakens me and I have to take nosepiece off because I am about strangling. (I think that may be that I am
> rebreathing exhalation, but I am not sure); face and
> nose area burn and turn red and raise welts; I have very sensitive skin; headpiece and nose pieces all shift and
> become unsealed because I toss and turn and then I
> am awakened even more than before, causing worse
> sleep, and vicious cycles, etc.
>
> I don't know much about this yet, but am wondering
> about equipment I was sold ($500): REMStar/Pro
> (manual dated 2002). Is it up to date
> sufficiently?
>
> I am struggling to comply and not doing too well.
> "Private respiratory therapist" has never called,
> handled all nose-pieces at end of day with unwashed
> hands after seeing other patients (apparently she never heard of how the flu and colds are spread; I washed everything before using it the first time); told me that for nostril inserts with two tubes that I just have to
> fling it over my ears and put small strap on front.
> After that immediately flipped off, at 2am I read
> instructions and found that the straps in the
> package that I asked her about and she said weren't
> needed, actually are needed. Stays on head now,
> but inserts pop out. They do seem to fit snugly in nostrils. To the point, I cannot rely
> on "private respiratory therapist" for assistance.
>
> There are no support groups in our town or next
> nearest city in Florida. I have to rely on support
> online. I do know how important this is when of 90
> episodes of non-breathing, the longest was 41
> seconds. I wasn't tested despite complaints for
> five years because I only "purr" (per my husband and
> nurses at sleep center) not snore and I don't awaken
> gasping for air and (maybe) because I am not a man. E-N-T doctor says with 41 second episode, I should be awakening neighbors with my snoring and jerking awake, which I don't do.
> I don't fit profile. How do I get help?

Note: I am having a second sleep study on Dec. 13, this one half with and half without CPAP to see if it helps. The first study did not use the CPAP during the night. I am hoping the second sleep study will clear up what kind of apnea I have since the e-n-t doctor says he can't see evidence of obstruction and that cpap does not work for non-obstructive apnea.

Adam Robison has replied to me and I am re-reading his advice and taking his advice to post my original email.

Thank you in advance for any direction you might give me,
> Sharon Rapone
>
>
>

Hi Sharon,

The person who told you to post your story to the main apnea forum on this message board told you right. You'll get support and answers to your questions here from a lot of people.

I'm not a doctor or health care professional of any kind. But, imho, it sure sounds like you've not been handled well at all by the "professionals."

Do you have a report from your first sleep study? If not, you might want to ask the doctor's office for a copy of your report.

From your description of the "mask" they gave you, it sounds like a Nasal Aire? If so, it's an interface that some people like, but was too noisy for me, and uncomfortable in my nostrils. A "mask" that might suit you better is the Breeze with nasal pillows, especially if you will have them fit you with "pillows" that they'll say are too large for you. "Too large" suits me better in nasal pillows because it makes them sit more outside my nostril openings (the nares)....sitting nice and cushy against the openings to my nostrils rather than shoved up inside my nose.

However, if you are leaking treatment air out through your mouth, no nasal interface (either covering the nose, or pushed up into or against your nose) is going to deal with that. Usually a full face mask (covers just the nose and mouth) is the answer for gushing mouth air leaks, but since you say you have very sensitive skin and are easily irritated by parts contacting your face, it's kind of a catch-22.

A lot of people who have sleep apnea don't "fit the profile". It's good that you are going in for another sleep study in Dec. Do be sure to get a copy of the report from your doctor afterwards.

Good luck and keep posting any questions or problems you have!

Sharon,

Wow, your posted message really got to me.

Rested Gal has already given me lots of advice to think about. I know others will chime in too. I'm new, have had the two sleep tests and a followup visit to the doctor who ordered the tests. I'm awaiting getting the equipment. I find reading this forum so helpful. Sometimes it makes me more nervous, seeing people having problems. But mostly everyone is real supportive and upbeat, and it's good to read about people having success adjusting to this, treatment and all. I don't much care for this doctor, a referral via my medical coverage. He even got annoyed when I asked for a copy of the sleep clinic report, and when he photocopied it for me, he gave me only part of it, I guess thinking no mere woman should be bothered with the fancy graphs and things. I get madder and madder every time I relate this! It's your right.....no, an obligation for you to have those test results. A good doctor will know that. This bad doctor got mad when I admitted to browsing the internet for information. My primary care physician always encourages me to use the internet or any other info. With so many different types of doctors out there, we've got to look out for ourselves.

I don't know if you're aware of the private message feature of this forum, where you can talk to specific people if you have a question/comment you might not want others to view. That's always nice, too. Feel free to use it.

Good luck to you.

Linda

Sharon,

Ooops, my above post got logged on as guest. I'm registered, so if you ever want to post a private message to me, look for my LDuyer name.

Linda