had follow up with sleep doc today--update (sorry, long)

cflame1 · Post by **cflame1** » Wed Jul 18, 2007 5:42 am

JR,
If using a CPAP was all that it took, my GP would be great at dealing with my sleep problems, because she wears one. But she's not, and she's one of the first to admit it. She agrees with my choice of sleep doc and thinks that he's awesome.

sharon1965 · Post by **sharon1965** » Wed Jul 18, 2007 8:29 am

My insurance is so bad that it also pays for a mask only once every five years! How ridiculous is that? How many masks last for five years??

this is definitely the worst one i've heard yet!

so is it cheaper for you to purchase interfaces from cpap.com? or do you have to pay the outrageously inflated canadian prices?

VT_very_tired · Post by **VT_very_tired** » Wed Jul 18, 2007 8:44 am

Hi Sharon,

I've been away for a few days. Hope your doing better. As an aside I call the idiot MD back that left me a message on my cell phone. Early June when I called, I couldn't get to see him until August 5th. Now all of a sudden there's an opening Thursday at 9 am. Must have looked at the result and realized I wasn't just a lone voice crying out in the wilderness.

But again, your in my prayers and hopefully your MD will figure it out.

VT

jabberwock · Post by **jabberwock** » Wed Jul 18, 2007 8:55 am

Sharon,

I have purchased a couple of masks from forum members and a couple on ebay. Now I am playing mask roulette in the continuing quest to find the right mask. Unfortunately, I realized last night that I might be mouth breathing and since I don't like the idea of taping, I guess I'll have to try a few more FF masks.

I would NEVER buy a mask at the ridiculous prices they charge in Canada; at least, not until my insurance will pay for another one

Bonnie

sharon1965 · Post by **sharon1965** » Wed Jul 18, 2007 9:01 am

and since I don't like the idea of taping, I guess I'll have to try a few more FF masks.

this might be old news to you, jabbs, but instead of taping have you tried polident strips? they're really convenient and not so bad...i just can't handle the thought of a ff mask, myself

jabberwock · Post by **jabberwock** » Wed Jul 18, 2007 9:11 am

Thanks for reminding me of that Sharon . The Polident strips sound kinda yukky, but I will try them and see how I do. I actually don't mouth breathe, I mouth "leak", and it's a vicious circle... when I leak, my pressure increases to compensate, and as the pressure increases, my mouth leaks more...

Bonnie

sleepyred · Post by **sleepyred** » Wed Jul 18, 2007 10:01 am

excuse my ignorance here - but what are polident strips and could you explain exactly how they would are used? I worry about "sticky" stuff that might like to "pull" skin! Would love to try it though - with some instructions!

Sleepyred

jabberwock wrote:Thanks for reminding me of that Sharon . The Polident strips sound kinda yukky, but I will try them and see how I do. I actually don't mouth breathe, I mouth "leak", and it's a vicious circle... when I leak, my pressure increases to compensate, and as the pressure increases, my mouth leaks more...

Bonnie

Wistful · Post by **Wistful** » Wed Jul 18, 2007 10:15 am

Oh Sharon, I am so sorry you are having such a hard time. I see my Sleep Doc here in Montreal in the fall, I can ask her for a reccomedation if that would help.

As for the poly-grip strips, sleepy red, they were the perfect solution for me, the lip leaker.
They are basically a small rectangular piece of double sided 'tape'. You wet your lips, dampen the strip and put in in between your two lips, close your mouth and voila! The nice thing about them is that you can open your mouth if choose to, and need simply to wet the strip on your lips to reseal. I could not handle the idea of taping, so the strips were perfect.
FYI, don't soak the strip, it is essentially a strip of clue, so it will get really icky if you do that

W

ozij · Post by **ozij** » Wed Jul 18, 2007 10:38 am

... and they're used to make dentures stick to their place....

O.

sleepyred · Post by **sleepyred** » Wed Jul 18, 2007 10:55 am

Thanks - think I'll try this! And thanks for the tip that I can open my mouth - I do get up and have a sip of water in the night.

Do they come off easily in the a.m. - might be a silly question - but do you just pull it off? Does it "stick" like a bandaid when you take it off?

As for the poly-grip strips, sleepy red, they were the perfect solution for me, the lip leaker.
They are basically a small rectangular piece of double sided 'tape'. You wet your lips, dampen the strip and put in in between your two lips, close your mouth and voila! The nice thing about them is that you can open your mouth if choose to, and need simply to wet the strip on your lips to reseal. I could not handle the idea of taping, so the strips were perfect.
FYI, don't soak the strip, it is essentially a strip of clue, so it will get really icky if you do that

sharon1965 · Post by **sharon1965** » Wed Jul 18, 2007 10:58 am

they come off very easily, just a little gooey but not so bad...i tried the polident paste first and was gagging just trying to wipe the goo off my lips ...the strips are much easier and the little bit of residue is easy to clean off...i use one strip for two nights by cutting it in half lengthwise

Wistful · Post by **Wistful** » Wed Jul 18, 2007 12:07 pm

Just wipe them off with a tissue.
W

sleepyred · Post by **sleepyred** » Wed Jul 18, 2007 12:15 pm

Thanks! I will try this tonight.

sharon1965 · Post by **sharon1965** » Wed Jul 18, 2007 4:42 pm

thanks for all the kind thoughts and words

i'm feeling a little better about my appointment and ready to share

the first thing the sleep doc asked me was how my iron supps were going...we checked my file and the bloodwork had finally come back from the lab, so it showed that my ferritin levels had increased from a dismal 6 to a respectable 30 in just a couple of months...yayyy, some good news...so he wants to get it up to 50-60 to see if that will address the restless leg and periodic limb movement, which he seems to be convinced are the real underlying reasons for my lack of improvement in spite of cpap-in that the leg movement every 18-30 seconds or so is causing so many arousals i can't possibly be getting any real rest...interestingly enough, he seemed geeked about the possibility of trying to get me off the 'requip' if the numbers do get that high, and that was refreshing as i've never had a dr. who didn't want to just throw pills at me at every opportunity...so 4 more months on the same dose of iron and requip, then bloodwork...if it's high enough, off the requip to see how i do, if it's not, increase the iron supp dosage

he didn't seem to think my pressure was an issue, in spite of how low it is, because he insisted that we had 'perfect' control of my apneas at 6 cm...so no bumping that up...he said upgrading to a data capable machine was a fine idea, though he didn't think it would show much since he seems to think i would know if i'm mouth breathing or having significant leaks--i knew he'd say that, so i told him that not feeling better after nearly 6 months of 100% compliance was discouraging and that i'd feel better if i could monitor my therapy...he agreed that i should go ahead and upgrade

but...he didn't feel that i need an apap, since my apneas were consistent throughout the night...he maintains that people who have more or less apneas based on their position or the sleep phase they're in are candidates for apap as their needs change throughout the night and mine, apparently, don't... tried the approach that maybe one night in titration is not truly indicative of my needs, but he managed to deflect that somehow and now i don't even remember what he said...i would like to have an apap, though i'm not absolutely determined, i just hoped that if he changed my prescription it might give me more leverage with the supplier, but no, no new prescription

so, reminding me that i have fibromyalgia, which causes profound fatigue along with pain--and we all know how pain can cause exhaustion as well--and that i have other issues besides severe osa--he suggested we give it another 4 months and do a re-check...i told him that 4 more months was a really long time to someone who feels like shite and that it would almost be a year in total by that time...he told me again that it can take as long as that for some people, especially complicated cases with other sleep issues, but that if i don't see any improvement by then, we'd run more tests

so, i made it to the elevator before i started to cry like a big sissy girl , cried all the way home and spent the day in a funk

but i've also emailed my RT and told her i need to know what my options are since she told me to wait and talk to him about upgrading...she has never come out and told me that i can't change my machine, and i'm going to need to hear that from her before i make any other decisions; then i'll have to see about getting a copy of my prescription so that i can order a new machine on cpap.com since there's no way in hell i'm paying the inflated prices they charge at my supplier

so, sorry about the long rambling post--though i think i may be famous for those by now!

...thanks to all for the well wishes and thoughtful pms

sharon

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Wistful · Post by **Wistful** » Wed Jul 18, 2007 4:51 pm

Ramble all you like my dear, you have every right to. I will keep praying for you!
Erin

had follow up with sleep doc today--update (sorry, long)

Still pulling for you

Wistful ?

update on re-check with sleep doc (long)

Software

Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips

Mask

Additional Comments: Aussie Heated hose for rain out/PapCap Headgear and chin strap