Hi, I am introducing myself and seeking advice.

I was diagnosed this spring.  I'm in a town where there's only one doctor/clinic that is available to with my insurance for diagnositics and treatment.  The culture of that office is really pretty negligent and - "get over it, get used to it."  For example, even though they had me fill out a questionaire that was supposed to help identify a good mask for me, they never looked at it.  Just gave me an Resmed S8 machine and an Quattro mask and sent me out the door.  Odd, since I had really strugged with, and hated, the Quattro during the titration study - severe and loud leaks, pain, bad aerophagia, etc.   I informed as I was walking out the door that the mask would have to be exchanged in 3 days, if at all.  I told them there was no way I was starting treatment immediately, because I was 4 days short of my wedding and honeymoon. Didn't matter.

Fortunately, there is ONE employee there who does not follow the rest of culture and since then, both my spouse and I have met with her AFTER HOURS to find masks.  She has kindly leant us ones from the study supply.  With that one employee's help, I've identified the FP Flexifit 432 as the only mask that will likely work - I have a severe overbite that doesn't close fully and major sinus issues.  So, my mouth opens very widely during sleep in order for me to breathe. A chin strap is defenseless (and could keep me from being able to breathe).  The Flexifit 432 seems to be the most accomodating for this range of movement without requiring a chin strap.  Also, the aerophagia is much improved with this mask for whatever reason.

After getting the mask squared away, I found that after being asleep for about 2 hours, I felt like my ear drums were going to blow out of my head and the mask was about to blow off my face. I also struggled to breath against the pressure - I was at a 16 pressure level, which I know is high.  So, I asked the Dr. to lower it.  He went down to a 14.  Now, at the 2 hour mark, I wake up feeling like I am suffocating.  I can't breathe, my heart is racing, my body is flushed and sweating.  I often have to get up out of bed and sit upright in a cool room for an hour or more to fully recover. I know that this is somewhat common, but I'm thinking that if it was anxiety/clausterphobia (the common cause) I would experience it before the 2 hour time period and it would be hard to go to sleep in the first place?  I've tried adjusting the humidifier settings, but they don't make any difference.

Anyone have any ideas as to other possible causes or solutions?  Is it something I should try to just get used to for now?  How long is too long to try to get used to this terrifying sensation that I have like clockwork after 2 hours every night?  I'm definitely not getting good sleep this way.

Thanks in advance.  



Last edited by JulesDread on Sat Jul 11, 2009 11:15 pm; edited 1 time in total

Just some thoughts on some of your problems. Is it possible that your suffocating, can't breather and racing heart are simply apnea events?

In my experience the ear drum thing is related to swallowing or yawning on the "inhale" or an inner-ear or sinus or allergy thing going on.

What brand / model of cpap do you have? Do you have a C-flex, A-flex, or EPR function that is not turned on?

Hi, I'm enough of a newbie, I'm pretty vague on what you're talking about with those functions, so its certainly possible.  (Feel free to post a link explaining if you think it would be helpful, I'll gladly read it)  My machine is the Resmed Escape S8 if that helps.  It seems I've been locked out of every function except ramp and altitude.

So you are telling us that the sleep doctor, the sleep lab and the DME supplier are all one facility??? Or is there more than one local DME supplier? How long have you had this S8 Escape now?

Iyou've had it less than 30 days t might be worth your while to call your insurance company and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than this one w/in a reasonable distance as that gives you more bargaining/negotiating room.

From the sounds of this sleep doctor you are going to need a fully data capable CPAP (at least the Resmed S8 Elite II w/EPR if not the Resmed S8 AutoSet II w/EPR) so that you can help yourself. It seems pretty obvious this sleep doctor isn't going to be much help at all.

I'm pretty sure that the S8 Escape has the EPR function. That can give you up to 3 cms of pressure relief on exhale. There are settings for 1, 2 and 3 cms of expiration pressure relief and you should be able to select the one most comfortable for you or turn it off and not use it at all.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity mask, ResScan 3.7, S8 ResLink, Embla oximeter.

Yep, the diagnosis clinic, equipment supply and doctor are a one-stop-shop.  In fact, I've been a little suspicious of the whole thing.  Like, one of the employees said "we're all on c-pap here" and I don't know anyone who's walked out of there without an apnea diagnosis so far.  Oh, and the Dr. hires techs with no training, education or experience in polysomnography -- just trains them on the job.  Some decide later to get certified.

There's one other supplier here, but they would require me to bring in prescription.  Also, I'm way too late on exchanging the machine.  I took the machine, had a wedding less than a week later, followed by a two-week honeymoon, followed by a week-long business trip.  Pretty much ate up the 30 days before I even started therapy a few weeks ago.  Plus, I think that office has a 3-day policy for all equipment anyway.  Wish I had educated myself earlier, but it was an insane spring with my workload being double it's norm and the wedding and honeymoon planning.

So, with the S8 Escape is there a way for me to hack in and adjust the EPR?

I have no idea. You will have to dig out your Users Guide and see what it has to say. You should be able to. I could on my Elite.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity mask, ResScan 3.7, S8 ResLink, Embla oximeter.

Nope -- "The S8 escape is ideal for patients who want the convenience and portability of the S8 models but do not require the added comfort features of EPR mode."  I guess it was decided for me that I didn't need that added comfort.

*sigh* I'm so sorry they got away w/pawning off that bare bone compliance data only Escape on you. Your insurance and copay are paying as much for that Escape as they and you would have paid and copaid for an Elite. They are both HCPCS code e0601. Insurances pay by HCPCS code, not by brand and model. If it is any consolation, the Escape provides excellent therapy, therapy as good as the Elite, just doesn't have the comfort options such as EPR or the full data capability. The S8 Escape is a 2006 model. Resmed has since come out w/the S8 Escape II in June 2008 and the S8 Escape II has EPR.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity mask, ResScan 3.7, S8 ResLink, Embla oximeter.

It's really a bummer that you got stuck with the Escape. I have had mine for almost two years now, it's works fine, but I hate that there's no data capability. I often have days when I can hardly get up in the morning and walk around with brain fog all day. Ido not know whether it's because of having too many apneas or some other reason. My insurance company told me they would have paid for a data capable machine but it was too late by the time I realized there was something out there other than what I had. So...it's either wait until it breaks down (I have a hunch it's going to keep pumping forever), wait five years until I am due for a new machine, or save up the bucks to buy one myself. I have found a new DME. I hope you can also.
Grandma


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ResMed Quattro Full Face Mask
ResMed S8 Escape with heated humidifier
Pressure set at 11

Thanks for the help, everyone.  It isn't exactly good news, but at least it won't be a big mystery anymore.  I'm almost tempted to make an appointment and go confront the doctor - in a nice way.  Just say "Hey, you want me to be at a 16, which is high.  Why wasn't I sold a machine with some sort of exhalation relief?"  

Is there some specific term of art that encompasses the C-flex, A-flex, and EPR functions?

I went back to the doctor today.  He said he doesn't believe in C-Flex, EPR, etc.  He says he thinks it closes the airways and compromises therapy.  He basically dismissed it as a manufacturer's gimmick. Ultimately, he just lowered my pressure yet again.  I'm down to 12 from 16.

He is also against data capabilities - says the data is largely inaccurate and insurance companies will use it to deny continued coverage - will claim that if patient is using not C-pap regularily, they will no longer cover supplies, etc.  Although that doesn't really seem to make sense since all machines seem to have compliance data if nothing else.

Oh, and my insurance co. denied my machine.  The Dr.'s office didn't send in study results, etc.  I think this is just a hiccup and is easily resolved, but its still irritating.

Thoughts?

JulesDread wrote:

I went back to the doctor today.  He said he doesn't believe in C-Flex, EPR, etc.  He says he thinks it closes the airways and compromises therapy.  He basically dismissed it as a manufacturer's gimmick. Ultimately, he just lowered my pressure yet again.  I'm down to 12 from 16.

He is also against data capabilities - says the data is largely inaccurate and insurance companies will use it to deny continued coverage - will claim that if patient is using not C-pap regularily, they will no longer cover supplies, etc.  Although that doesn't really seem to make sense since all machines seem to have compliance data if nothing else.

Oh, and my insurance co. denied my machine.  The Dr.'s office didn't send in study results, etc.  I think this is just a hiccup and is easily resolved, but its still irritating.

Thoughts?

Jules I have been reading this post and like the others, I feel this doctor and "organization" are in it for the money and not for the well being of the patient.  I can't believe he would tell you c-flex compromises pressure.  I mean it breaths with you.  It allows you to exhale easier and provides the pressure in inhalation.  Many people here have data capabilities.  This makes me wonder what this guy is trying to hide.  Talk to your insurance company about your concerns and see if there are other places you can go to.  For your own well being it might be worth the drive.    

Also how does a place like that "forget to send in the sleep study results to insurance if the want to get paid" !!  

I am guessing, but if he is lowering your pressure you may not be getting enough pressure to stop the apneas.  The symptoms you describe are just like when you are untreated.  I used to have all that before I started therapy.  You may need the higher pressure, but with the relief when you exhale.  Also there are many masks available and every person is unique with what will work for them.   Beware of this place.   My DME is awesome, when I first started they gave me a nasal mask and I my insurance paid for the ff mask.  Since then they have given me a different head strap and filters for my machine.   They have just ordered for me two other masks I just want to see if I like.   I am looking for a ff mask that does not have the forehead brace.   They are working with me to find what works for me.  They are getting paid for their services by you or your insurance.  They should be working for you.  You should not have to settle for anything less than what you need for a good therapy!  Good luck


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REMstarplus, M Series with C-flex and heated humidification
C- Pap setting of 10
ResMed Mirage Quatro full face Mask
Sleep study showed 36 events per hour
Location, Nebraska

Well, I did some research online today and it looks like that since I started this whole thing back in February, a sleep clinic has opened up within a newly opened physician owned hospital.  There are some board certified sleep specialists there and at least one is covered under my insurance (maybe all are and my hbp's directory hasn't been updated).

The big question will be if they can do for me now that I own this inappropriate machine and my insurance won't want to cover another?

Anyone want to by a bare-bones Escape S8? ;)

Call your insurance company, tell them the problems you have and let them know you want to go to the other provider and what are your options if another type of c-pap is perscribed.  If you have to buy one, explain to the new DME the problem see if there is anything they can do for you.  Perhaps some creative financing.  Also check the net for a slightly used machine.  You often can even find them on e-bay, or a c-pap supply house.  Check out to see if there are any charities in your area that might be able to help you.  This is something you HAVE to have so you have nothing to lose by checking out all options, but start with  your insurance company first.   Anyone out there have any other suggestions due to a similair experience ??


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REMstarplus, M Series with C-flex and heated humidification
C- Pap setting of 10
ResMed Mirage Quatro full face Mask
Sleep study showed 36 events per hour
Location, Nebraska

I really appreciate the suggestions.  I have been looking at the C-pap auction site and my local Craig's list.  If I did purchase one of these, would I be able to set the pressure myself?

BTW, I just found the post from PWPyle in this thread: http://www.apneasupport.org/post-458.html.   I have the same doctor.  PWPyle was lucky to have smartened up faster than I did.  It's so frustrating, because normally I obsessively research everything.  This time I was just too busy.