Desparate for Advice

KayainOC · Post by **KayainOC** » Fri Apr 27, 2007 12:40 pm

Okay, I got my CPAP in early Feb. Things went well for the first month when I had a prescribed sleeping pill. That ran out after 30 days and for the last 3 weeks I have been ripping the mask off at night, only to wake up in the morning having been apneaic all night. This is catching up with me now and I feel AWFUL. Unfortunately, when I don't sleep well I cry uncontrollably for no reason - NOT a good thing to have ahppen at work.

I have a full face mask that makes me feel hot around the mouth and neck and I feel like I'm suffocating. I am pulling it off shortly after I fall asleep and never put it back on. It basically terrorizes me. Here in California, when I went to the class to get my machine, the technician told me that if I wanted to be fit for a different kind of mask I would need to go back to my doctor and then back to the sleep lab - WHAT?>??!!! This sounds crazy! I have an appointment with the Doctor next week, but I am looking for any suggestions on what my Plan B might be. Should I try a different kind of mask? If so, what kind typically works well for people with my anxiety and suffocating issues? Believe me, I wish this was something I could help, but I can't.

Also, if anyone knows how to stop the uncontrollable crying, I'd be open to suggestions there too!

Thanks,
Kaya

tangents · Post by **tangents** » Fri Apr 27, 2007 12:49 pm

Hi Kaya,

Sorry you're having such a rough time of it, but you've come to the right place for help. I definitely think you need a new mask, and you DEFINITELY DO NOT need to have another study done. A lot of people seem to have claustophobic wearing a full face mask, so don't think you're different or something you should be able to control.

You don't even have to go back to the doctor if you don't want to. You can order whatever mask you want to on line.

I'm sure you'll get lots of ideas from the good folks here. My opinion, for someone like you who's pretty freaked out, would be to go "minimalist" with the Puritan Bennett Twilight NP. If mouth breathing is a problem, you can try PolyGrip Strips to seal your lips - they might seem less scary than tape.

Good luck, and keep coming back.
Cathy

SleepingBeauty · Post by **SleepingBeauty** » Fri Apr 27, 2007 12:50 pm

Hi Kaya. If "in OC" means in Orange County, I am in OC too. I'm sorry you're having so much trouble.

I'm using the Aura Twilight. This is my third mask since starting CPAP last September.

I like the Aura because I can sleep on my side without problems, my leak rate has improved and my apneas have decreased.

I also have a Naselaire II and the OptiLife. They were okay, but tended to cause problems for me when I moved around at night.

My doctor suggested I try a little Benedryl if I was having trouble going to sleep when I first got the mask (not a problem for me any longer)

A mask doesn't require a prescription. You should be able to go to the DME and try any mask on. Who pays for it would depend on your type of insurance. Mine doesn't cover the machine or the mask, so I just order from this site.

I've only dealt with Apria in Tustin, but that was enough for me! I can't see why you would need to go back to a sleep doc to get a different mask! If your insurance covers it, you may need to call your doctor to have him order it for you, but if insurance doesn't you can either buy it on line (cheaper) or go to the DME and they will charge a fortune, but you can try them on. I'd go to the DME, try them on, pick one, and buy it on line!

Good Luck

KayainOC · Post by **KayainOC** » Fri Apr 27, 2007 12:58 pm

Sleeping Beauty - YES, it is Apria in Tustin - WHAT A NIGHTMARE!!!!

I would like my insurance to cover whatever I get, but at this point it's almost worth private paying if it means avoiding Apria.

KayainOC · Post by **KayainOC** » Fri Apr 27, 2007 1:08 pm

Here is the mask I presently have. I literally had a panic attack just looking at it online. I have a little anxiety problem that becomes a BIG anxiety problem when I don't sleep.

Manufacturer: Resmed

Ultra Mirage Full Face Mask with Headgear

gasp · Post by **gasp** » Fri Apr 27, 2007 1:21 pm

[/quote]Sleeping Beauty - YES, it is Apria in Tustin - WHAT A NIGHTMARE!!!!

I would like my insurance to cover whatever I get, but at this point it's almost worth private paying if it means avoiding Apria.[/quote]

Perhaps your insurance is like mine. I had multiple DME providers to choose from. You can either call your insurance and ask for a list or perhaps they have a provider directory online.

I can empathize with you. I've never tried a mask, but on top of not wanting my face covered (feeling of claustrophobia), I imagine I would get a rash from the heat/ contact with the face mask.

Hang in there.

KansasRT · Post by **KansasRT** » Fri Apr 27, 2007 1:24 pm

I am not sticking up for DME's or Dr's or anyone, but just a background. I am used to fitting my patients with a mask. When a patient gets set up we spend 1-2 hours going over the machine and trying on different masks and trying on different masks. The patient leaves with a full understanding of CPAP, sleep apnea, their mask and the whole lot. I have a DR that insists that the Comfort Classic small mask is the only mask for every patient. I have fought this and fought this. I have started calling the Dr with the patient in the clinic and telling them that their mask is not working and could I get another order for a different mask. I hate putting the patient in the middle, but what else can I do? Sometimes when your DME is being difficult it is really the Dr's fault, not ours.

kteague · Post by **kteague** » Fri Apr 27, 2007 2:43 pm

KayainOC,

Just getting things going on an even keel with the therapy is the hardest because you need to expend extra energy and there was already a shortage. I cried a lot then too. It seems experiencing frustration after allowing yourself to hope the worst is over is just too disappointing. This will pass - those tears won't always be sitting so close to the surface. And if you loose a few before you can excuse youself, try not to take yourself too seriously. Soon you'll be shaking your head and saying "Gee, I WAS such a crybaby."

Kathy

snoregirl · Post by **snoregirl** » Fri Apr 27, 2007 3:00 pm

Just make sure your insurance is really worth it on the mask. Make sure your copay isn't more than an online cash purchase without insurance.

Wulfman · Post by **Wulfman** » Fri Apr 27, 2007 3:08 pm

KayainOC wrote:Here is the mask I presently have. I literally had a panic attack just looking at it online. I have a little anxiety problem that becomes a BIG anxiety problem when I don't sleep.

Manufacturer: Resmed

Ultra Mirage Full Face Mask with Headgear

You need to make friends with your mask.
If that one is properly sized and adjusted, it's one of the most comfortable masks on the market.

Other possibilities are that your pressure might be too low.....too high.....too much humidity or too little.

Which machine do you have, what is the pressure setting, do you have a humidifier?

Try wearing/using your equipment when you're sitting in front of the TV during the day/evening.....BEFORE you go to bed.

Best wishes,

Den

SleepingBeauty · Post by **SleepingBeauty** » Fri Apr 27, 2007 3:17 pm

Sleeping Beauty - YES, it is Apria in Tustin - WHAT A NIGHTMARE!!!!

I would like my insurance to cover whatever I get, but at this point it's almost worth private paying if it means avoiding Apria.

Okay, I totally can relate to you then! I had an awful experience with those people. I work just down the street from that Apria and absolutely positively will not go there to buy anything...not even a hose replacement.

I got myself angry just thinking about trying on new masks there, (plus, I knew it would take weeks of making an appointment, showing up and having it be a "scheduling error" with the person I was to see out on vacation, and a "please call back and reschedule" type situation) so I just researched, crossed my fingers, and ordered on line.

I don't like a lot of stuff on my face either, so the mask you were issued wouldn't work for me either.

What type of mask did you have during your testing? Do you think you could handle having just a nasal mask and then taping your mouth if you find yourself with "leaky lips"?

I liked the Nasalaire II because it was so mininal - but side sleeping kept knocking it off and I'd wake up.

I swear one of these days I'm going to cut up all my masks and make one that I like from the parts!

Snoredog · Post by **Snoredog** » Fri Apr 27, 2007 4:45 pm

um...

1. Here in California, I never use the heat on my humidifier this time of the year. We are pretty dry humidity is luck to go over 20%. Turn your humidifier up too high and it will make you feel stuffy and congested.

2. There are hundreds of different masks. Sounds like your DME is Apria, best thing you can do is make them buy you the expensive masks and you buy the cheap ones yourself from cpap.com or elsewhere. Are you a mouth breather? Did they find that out during your PSG?

You would be wise to wait a few weeks to see what new interfaces will be coming out of the recent MedTrade show in Vegas.

The only company I've heard so far that is coming out with new interfaces is Resmed with their new Quattro and they have a Hybrid also coming out. I'm sure Respironics has a few coming out also, but the latter has had more misses than hits so I don't expect much from them.

Nodoze · Post by **Nodoze** » Sat Apr 28, 2007 6:32 am

I couldn't stand the full face mask either. I now have the CPAP-Pro mask and love it. That mask and a machine with C-flex made all the difference in the world to me.

You can read about the mask at http://www.cpappro.com

Good luck

RosemaryB · Post by **RosemaryB** » Sat Apr 28, 2007 1:49 pm

I just got my equipment and tried on 6 masks. My favorite was the ResMed Mirage Swift. It was so different than the nasal mask I wore during the sleep study. I love it compared to that one. It hardly feels like I'm wearing a mask at all. I may need to use Poligrip to keep from leaking, but it's still too early to tell.

If you have to have a full face mask due to mouth breathing, I hear that the Teleflex hybrid is an easier one, so you could look at that. It has nose pillows, so is much more open.

So many people here have had success after horrible starts. Hang in there and keep coming back for information so you can make it work, too.

Desparate for Advice