Sleep Apnea

[goldicedance]

I recently began using a CPAP because of sleep apnea. It is still difficult to sleep with this mask on my face. I wake up in the morning with red creases and even had a bruise. (Melissa, dear, what style mask do you use?)

Despite the difficulty of using the CPAP mask (I have to wait 6 months before my insurance will cover a new mask), I have noticed a big improvement--the number of trips to the bathroom--have decreased significantly. Hopefully, I will see some benefit in "fatigueness" and forgetffulness.

I would suggest that you may want to consider getting a sleep study if you have not already done so!

Lois

[dawn]

Have you tried the nasal prongs?

I had better luck with them than the mask.

Unfortunately, I cannot use mine as my sinuses really flare up.

If you don't have sensitive sinuses they work great. They fit like oxygen prongs but, have a soft end on them to

fit snuggley in your nostrils.

Dawn

[morgan617]

My pcp refuses to order a sleep test for me. My son just got a cpap and much prefers the prongs over the mask. He does find that he wakes up with the prongs sitting neatly on his bedside table and no memory of pulling it off, but I can certainly tell when he's worn it and when he hasn't. morgan

[Sunfish]

hi lois -

it's so great that you've seen some improvements already...congrats! sorry that you're having a touch time getting adjusted though...hopefully a better mask fit will help that for you. some have trouble even with a great mask fit but i know for me once my mask was good to go i didn't have any trouble at all so hopefully that will be the case for you. that may mean a new mask or perhaps just some adjustments to the one you already have. which one are you using? since you mentioned bruising i'm wondering if you might even have your mask adjusted too tight? it seems counterintuitive, but the seals on most of the masks actually work better a bit looser. just a thought...

after a decent amount of trial & error my favorite mask/ headgear is Respironics' ComfortLite 2. it has three cushion options of which i use the "simple cushion". i tried other nasal pillow masks and more standard nasal cushion masks before this one without great luck. i had a lot of trouble with skin irritation/ chafing/ rashes as well as even the small sizes of some mask styles being a bit too big for my build. thankfully i was connected with a great sleep center when initially tested/ diagnosed that had access to some mask samples so i was able to try several masks without the constraints of insurance.

here's the info on my mask (though the first picture isn't with the cushion i use):

ComfortLite 2

http://comfortlite2.respironics.com/

"fitting guide" for the above mask showing the various mask options:

http://global.respironics.com/UserGuides/F...ePatientCL2.pdf

i prefer the "simple cushion" as the others tend to irritate my nostrils after more than a night or two.

the only time i had to use a different mask was when i had an NJ tube in once at the hospital. we couldn't get it configured right so i had to make do with something they had. it would also be tough (as would any nasal mask) during a cold wherein one was badly congested on both sides but the one cold i've had since being on CPAP/ BiPAP seemed to alternate nostrils so i managed okay . but that's here nor there...

i always use my own mask at the hospital (my old mask is packed in my ready-to-go hospital bag) & - as funny as it may sound - often get "compliments" from the respiratory therapists as most haven't seen a mask like mine. it was used for me in ICU when i was on BiPAP 24/7 as well so i'm SO glad i had something that fit well. it honestly may have been a contributing factor in my being able to stay off a vent. but that's another tangent...

the other nasal pillow system/ mask i tried was Resmed's Mirage Swift. there's a new version out now (Mirage Swift II) but it looks very similar: http://www.resmed.com/en-us/products/masks...l?menu=products

i loved the feel of it at first, the fact that i could slip my glasses on & off without having to take off the mask (i can't see the clock next to my bed so it's nice to be able to throw my glasses on during the night if needed without taking the mask off), it's not bulky, etc. i had some trouble with it leaking but the reason i had to scrap it was that after a few days i had a lot of trouble with irritation & a rash around my nares that kept getting worse. i was told it's a pretty popular mask though.

i don't recall which specific nasal mask i used & i have only used a full face mask during the NJ tube situation.

i think i have an extra set of headgear & some mask cushions for it that aren't my size/ style so since you're in the insurance bind maybe i could even send some your way. shoot me a note if you think that might be helpful. i'm not sure what size you'd need but i'll see what i have & could let you know in the next few days. you'd might want to wash the headgear (the fabric part) but it's in good shape & the masks haven't been touched.

hope this helps,

melissa

p.s. i spent a bit of time at an apnea forum when i was first diagnosed & gleaned some helpful info re: masks (though largely via searches rather than participating myself). i'm sure there are others but http://www.apneasupport.org is one option.

[ajw4790]

As far as the sleep study goes I have brought it up to drs. but for whatever reason are not real into it and just brush me off. Weird with them having diagnosed me with RLS!

Maybe they just want to wait? I don't think it is an apnea issue, but more of what others have posted on as not getting restful sleep with alpha delta sleep and/or the night owl syndrome etc. Or plain old RLS. I guess it would be good to know and try to treat!

[goldicedance]

Thanks, everyone, for getting back to me.

Melissa....thanks for your good information and offer. I have a respironics comfort gel. That is what they used at the Mayo Clinic Sleep Center so that is what the home health care delivered.

I am now on my second bad cold in a month. I wonder if the CPAP machine could be a contributing factor? I have a Respironics CPAP Flex with humidifier. The nurse at Mayo told me not to use the machine when I have a cold. I'm think the air flow into my nose just hastens the cold germs into my system.

I like to watch tv before falling asleep. I am hard of hearing and need tv ears headset to wear. Put that on over the mask is tricky at best.

Oh, well, my problems are few in the scheme of things. I will forge ahead.

[Rosie]

Woohooo......someone else has been diagnosed and is being treated. Good on you, Goldicedance! The beginnings can be a little rough, but hang in there. The results can be well worth the effort. If I can help in any way, let me know. I have been on treatment for 2 years now.

About the cold symptoms......I got those before I turned my humidifier up. The machine, for me, seems to make any virus much milder.

Morgan-

Can you work around your Doc? That is not something I would normally recommend, but will if (s)he isn't open to testing. Honestly, it is worth the effort.

AJW-

Same for you. Sometimes we have to be our own advocate.

Take care all.

[morgan617]

Rosie, I can't into a single doctor here without my primary's referral!!! I have preferred insurance and don't need referrals, but the doctors refuse to see me without them...I'm not sure what's up with that, because they make the money...so it's got to be a political thing. If cpap helped with my fatigue, I'd pay out of pocket for it....morgan

[Rosie]

Morgan.....a Sleep Lab connected to a University Hospital in my state doesn't require a referral. Might want to check yours if one is near.

My Insurance is like yours. I was able to get my PPC to refer me, but found out later I could have gone to the University without the referral.

Good luck!

[morgan617]

little miss fishy

I looked at the pics with Jake. He has the third one with the nasal prongs. He takes it off every single night in his sleep and places it very neatly on the bedside table. I think we need to duct tape it to his head at night! The machine he is using right now has variable pressures and he seems to have a lot more problems with taking it off than the one with continuous pressure. He's turning in his chip tomorrow and having them read, to see which machine works best. He said they only had two choices of masks, but I am betting they would order one for him. I am assuming you use the one that looks like a miner's hat?

Lois, I am so glad you are getting so much benefit from yours! I really can tell whether Jake has left his on for awhile or not. If asked he realizes it too. Obtuse boy..

Rosie, our closest University hospital is about 6 hours away. I did call them, and they said they would love to see me after I get a referral from my doctor and notes. I swannee, I don't think I would be allowed to use a public restroom here, without Dan's referral.....ikidyounotmorgan

[Rosie]

Well, what is the matter with that man, Morgan!!!?

Seriously, what are his objections? Maybe we can find something to convince him to change his mind.

[morgan617]

Did you know that having very vivid dreams that you can remember the next day, is wrong? It's an indication that you are constantly waking up and having disruptive sleep. You don't wake up enough to remember waking up, but you are. Jake found that out in his testing. It is a sleep disorder, as is being a "night owl" It has a name late sleep phase or something like that. Jake just can not get to sleep before 3-4 AM. That is a sleep disorder, besides his apnea.

So, I wrote a note to Dan and mentioned that since I dream all darn night and in vivid colors and complex storylines and can remember them for days, it could quite possibly be a reason for my profound fatigue. No response. We only have one sleep center and 3 doctors who specialize in sleep disorders. 2 of them work with my doctor! Jake sees one of them.

This is what I am up against with everything. The pitfalls of living in a city with few specialists. And of going to the same doctor for 23-24 years. My chart looks like a Stephen King novel, so no one else will take me on. There are only two neurology groups and one of the doctors in one diagnosed me with conversion disorder in 15 minutes with no physical exam. So the other group won't see me with out my records and a referral, and when they see that record, they will turn me down. Once a specialist has written me off, my primary doesn't want to talk to anyone else, as it reflects on him. He has been a good doctor, but has reached the point where he is shutting me off completely. I don't think I spelled that right.

I have stopped asking for anything at all. I haven't seen him in at least 6 months and my last labs haven't been looked at yet. They are over a month old. Can't send me the results till looked at, haven't gotten them yet. We would have to move to kookamunga and tell them my records were destroyed in a fire, before I felt like I could ever get any one to listen again. But I am so gunshy at this point, I don't even want to try....So I fight for my kid instead.....morgan

[Rosie]

Oh, Morgan!!! What a terrible situation for you to be in. Honest to goodness there ought to be a law prohibiting such things. And Conversion Disorder.....unhuh, yeah right. Pfffftttt...and a very derisive pppffffffttt, at that.

I hate to see you give up, but can understand why it seems hopeless. Maybe something will materialize.

Yes, I know remembering dreams isn't 'normal'. I will still occasionally wake up when I have a vivid dream, but I don't remember it the next day.

Tell your son he may want to hang on to the Auto machine if he can. The set up can be changed so that it will run at a straight pressure if he is more comfortable with that, but a straight pressure CPAP can never be changed to an Auto. Since he will have the machine for a good while, there may be a time when he might want an Auto. One that collects data is good as well.

Take care.