doc seems stubborn to prescribe bipap arg

[johnspartanII]

Since posting here a few months ago, uncertain about treating what seemed to be rem-only hypopneas, I went back to my doc to replace my cpap machine for one with the C-flex.

It is true - as I told him - that we still don't have much data on the success of the C-Flex machine. That's because I have been unable to sleep an entire night wearing the device; in fact I have not been able to fall asleep PERIOD! wearing the the thing. It is always for the same reason; chin strap or not, nose-pillow or face mask, it feels like I cannot exhale enough air before the exhalation relief portion of the machine switches back to shoving air down my throat. While I am awake, I can wear the nose pillow kind alright (it's actually kind of comfy), have already tried nose-mask with same result - but I cannot seem to get past this pressure deal. It's like the amount of air i need to exhale builds up every couple of breaths until my mouth is full of air that needs to get out, until eventually the air does get released through my mouth. Using the chin strap stops that but instead makes me feel like I'm about to suffocate since i can't force enough co2 out before the pressure kicks up again. I wish that the machine had not only more of a change in pressure during the exhalations, but more importantly, a longer time relieving the pressure before it kicks back on to the higher pressure (although I'm told that it is unlikely that is something I could adjust even on a bi-pap machine).

Now, the pressure I'm at, 8.0, is not very high. Although the doc's assistant was unwilling to tell me how to adjust it, I went online and figured out how to do that anyhow... no difference. In fact, if I lower the pressure much more, it feels like I can't get enough air in, so that's no good.

The sleep doc has instead prescribed Trazadone and wants me to attempt taking that along with attempting the cpap. However, if my lack of sleep continues, I'm going to end up not wanting to move, or eat. This is how bad it's getting... brain super fogged, appetite disappearing. I have discovered, however, that despite the danger people say exists with benzos like Valium when you have sleep apnea, if I feel absolutely horrific every couple of days, I can take a tiny dose, about 3mg, and it will knock me out so that I wake up feeling vastly improved compared to not using it at all.

So I guess my question(s) are: how useful has Trazadone been for anyone needing cpap? Have any of you guys experienced this problem adjusting to cpap in the beginning, and if so, what the heck was your solution? Should I tell my sleep doc, "hey, man, just get me the bipap so I can see if that makes a difference, please, NOW?" Finally - is it possible that depression has caused these sleep disturbances moreso than a physical obstruction?

Thank you so much CPAP-talk-ers.

J!

[Slinky]

We can all have different responses to medication. 1/2 the scripted low dose for sleep of Trazadone made me higher than a kite! Tingling all over, walked like a sotted drunk, talk about an "out of body experience"!!!! And I sure as heck did NOT sleep! And the bleeping sleep neuro wanted to UP the dose!!! Ha! No way!

Eventually, God bless my family doctor, I was scripted Ambien and THAT worked well for me. Guaranteed me 4 hours sleep most every time I took it. I never did try the Ambien CR.

Lunesta got me 7 hours sleep the ONE TIME I took it. The aftertaste was so foul and lasted so long despite repeated teeth brushing and mouth wash gargling that I wouldn't touch that crap again on a bet!

I was given Sonata once but that did NOTHING for me. Absolutely NOTHING, na da, zilch.

[johnspartanII]

I know it. The medication merry go round is no fun; I'm just wondering whether there's some sort of magic step I'm missing here and i feel like i'm running out of options before I'm just sitting staring into space all day. Many folks on this board speak very highly of the results they've had with cpap - I'd like to find out if it would really help me, but so far the only time I have actually slept with the mask on was the 2nd time I went in for the first machine titration... I had only managed to sleep about an hour the night before, and then during the titration I'm pretty sure I only fell asleep for the last 3 hours because I was completely exhausted.

I do realize this is pretty often trial and error for most, but surely somebody has run into this particular issue? Am I being unreasonable regarding asking to try a bipap machine? So far even with sleep meds at 'starting' doses I just cannot fall asleep with the machine on because of the reason I previously stated.

[Julie]

Trazadone gave me worse breathing issues than not using it - I'd wake up at night not being able to breathe, or congested, etc. (long before I was on Cpap) - it was orig. prescribed for my 'depression' following quitting smoking - so I ended up only using for about 2 wks, by which time thankfully I was over the depression, but I found it scary to use otherwise.

[TWW]

Presuming your sleep doc to be "on your side," it's entirely reasonable to tell him what you just told us: that you feel like you can't exhale. Give him a moment to (hopefully) suggest Bipap, which is exactly what my sleep doc did. It was as quick as "Wow -- this must be how emphysema feels -- I can't breathe out." "Oh, then we'd better get you a Bipap."

Then, if he doesn't come up with it on his own, broach the subject. Your doc wants to give you the best odds of success, and if you need Bipap to achieve compliance, chances are good he'll bless the idea.

[angela 6]

Medicines react differently for each individual. Two different people could use Ambien and have different experiences. The same with Lunest or Sonata. Sonata is proven to help you get to sleep, it isn't really known for keeping you asleep all night. Lunesta and Ambien CR are known for getting you to sleep and keeping you asleep. Trazadone is an antidepressant but it is also used to help you get to sleep. Again, you won't know it's effect on you until you try it. Like any medicine, side effects vary.

Also, if someone moves their arms and legs a lot while sleeping t(periodic limb movement) that can prevent you from getting a good sleep.

As to the breathing issue, 8 cm is not very high. If you combine it with Cflex for exhalation relief it should help you breath while using cpap. Cflex comes in three pressures, you need to experiment to see which one helps you best.

As to the BPAP, it is usually recommended for one of several reasons: a person has a very high sleep pressure, like a 20, and using the BPAP allows for better exhalation relief; if you have lung or heart issues and breathing is a problem, the lower pressure of the BPAP helps. BPAP are also used for people who have central apneas as opposed to obstructive ones. BPAP is also used for people that can't get their apneas and hyponeas addressed by cpap.

As for getting used to the mask, there is alot written on this forum about tips for getting used to the mask, the different types of masks available, etc. Do you have a DME that you like and is willing to let you try different masks while hooked up to a machine? Remember, you need to be lying down when trying a mask.

[angela6]

Medicines react differently for each individual. Two different people could use Ambien and have different experiences. The same with Lunest or Sonata. Sonata is proven to help you get to sleep, it isn't really known for keeping you asleep all night. Lunesta and Ambien CR are known for getting you to sleep and keeping you asleep. Trazadone is an antidepressant but it is also used to help you get to sleep. Again, you won't know it's effect on you until you try it. Like any medicine, side effects vary.

Also, if someone moves their arms and legs a lot while sleeping (periodic limb movement) that can prevent you from getting a good sleep.

As to the breathing issue, 8 cm is not very high. If you combine it with Cflex for exhalation relief it should help you breath while using cpap. Cflex comes in three pressures, you need to experiment to see which one helps you best.

As to the BPAP, it is usually recommended for one of several reasons: a person has a very high sleep pressure, like a 20, and using the BPAP allows for better exhalation relief; if you have lung or heart issues and breathing is a problem, the lower pressure of the BPAP helps. BPAP are also used for people who have central apneas as opposed to obstructive ones. BPAP is also used for people that can't get their apneas and hyponeas addressed by cpap.

As for getting used to the mask, there is alot written on this forum about tips for getting used to the mask, the different types of masks available, etc. Do you have a DME that you like and is willing to let you try different masks while hooked up to a machine? Remember, you need to be lying down when trying a mask.

[pagebypage]

It sounds like you are a "mouth leaker" as part of your problem, i.e. you are not really a mouth breather, but you release excess air/CO2 through the mouth when it builds up over time. I had a similar problem that gradually went away. Just trying to live with it, adapt to it, and consciously avoid it drew inconsistent results. Switching to a full face mask helped a lot. Now I can use almost any type mask without having that particular problem. Your problem sounds much more severe than mine was. It will probably take a combination of suggestions for you to get the relief you need.

[BlackSpinner]

. That's because I have been unable to sleep an entire night wearing the device; in fact I have not been able to fall asleep PERIOD! wearing the the thing. It is always for the same reason; chin strap or not, nose-pillow or face mask, it feels like I cannot exhale enough air before the exhalation relief portion of the machine switches back to shoving air down my throat. While I am awake, I can wear the nose pillow kind alright (it's actually kind of comfy), have already tried nose-mask with same result - but I cannot seem to get past this pressure deal.

Try a hypnotherapist. This issue feels physical but it is in your mind - deep deep down- 8cm is not much pressure. If this is not covered then invest in your self.

[Slinky]

With me it is not a matter of too much C02 or getting rid of C02 or getting rid of enough C02. It just plain is sometimes I get lax, lazy, overtired, whatever and for some reason my tongue doesn't hold as good a seal as usual and I will have air slip around my tongue and maybe fill my cheeks, maybe not, before it finds a way to sneak out between my lips.

I have COPD and many COPDers are C02 retainers, I am not as yet as proven by periodic PFTs and a recent ABG.

With a set pressure of 8 cms and C-Flex of 3 (APPROXIMATELY 3 cms) your exhalation pressure is about 5 cms and VERY FEW people can breathe comfortably at only 5 cms of pressure.

I would try "practicing" wearing my mask w/CPAP turned on to my set pressure at various times during the day and evening whilst reading a book, magazine or newspaper, working a crossword or jigsaw puzzle, crocheting, knitting, whatever occupies your mind and holds your interest other than concentracting on "I've gotta get to sleep, I've gotta get to sleep".

[Slinky]

Furthermore, bi-levels are CONSIDERABLY more expensive than CPAPs or APAPs. Most insurnaces require that you fail CPAP therapy before they will pay for a bi-level. Quite often, they will require that a doctor provide PROOF that a bi-level TRULY is NEEDED and the doctor must "jump thru hoops", provide a Letter of Medical Necessity, etc. before insurance will pay for a bi-level.

Are you WILLING TO PAY FOR A BI-LEVEL OUT OF POCKET??? Or do you want your insurance to pay for a bi-level you may well NOT really NEED.

[johnspartanII]

Thanks for all your answers! I almost managed to fall asleep wearing it for the first time last night, but yeah, same problem with the exhaled air building up in my mouth wanting to leak out. Plus I noticed I seemed to be getting a headache this time.... might that be a humidification issue? I will try mask #3, I guess (i sure do prefer the nasal pillows to the bigger masks so far, tho).

[Slinky]

Look, you've got a bottom of the barrel CPAP capable of providing compliance data only so you have no proof, only your say so of what you are experiencing.

And I'm not sure you aren't confusing an APAP w/a bi-level. It would seem to me that exchanging that Plus for an Auto w/C- or A-Flex would provide you w/some REAL answers if not THE answer to your problems. I'm thinking you may need the re-titration ability of an auto titrating APAP at home.

[Muse-Inc]

...prefer the nasal pillows to the bigger masks...

Try the Resp Care Hybrid, it covers the mouth and has nasal pillows (comes with 3 sizes of oral cushion, 2 sizes of pillows that can be set to 2 heights). I wore my beloved OptiLife from Aug '07 until I switched to the Hybrid July '09 because I was losing therapy air via puffs thru my lips. If the OptiLife is comfortable, you might like the fit of the Hybrid. Our host has mask insurance, so if it doesn't work out you can return it https://www.cpap.com/productpage/RespCa ... -Mask.html

I may be waay off base here but it sounds like the Respironics breathing waveform isn't working for you. Each mfg designs a certain pattern of inhalation-exhalation into their machines as well as exhalation relief. It just sounds like your breathing pattern isn't a good mesh with the Respironics design. Can you try another mfg's machine or two or three to find one that is a better match?

I do not sleep well on a single pressure; I sleep so much better with the varying pressures of an Autotitrating CPAP (APAP). An APAP varies the pressure it delivers based on your previous breaths, increasing as needed when it detects signals that it interprets as leading to an apnea or hypopnea -- this variable pressure fragments sleep and causes a higher AHI for some, for other like me it's wonderful! It is set to range of pressures and many offer exhalation relief. It could be that an APAP might be a more comfortable machine.

[rested gal]

Very good advice, as usual, by Slinky...

I would try "practicing" wearing my mask w/CPAP turned on to my set pressure at various times during the day and evening whilst reading a book, magazine or newspaper, working a crossword or jigsaw puzzle, crocheting, knitting, whatever occupies your mind and holds your interest other than concentracting on "I've gotta get to sleep, I've gotta get to sleep".

One small correction here:

With a set pressure of 8 cms and C-Flex of 3 (APPROXIMATELY 3 cms) your exhalation pressure is about 5 cms and VERY FEW people can breathe comfortably at only 5 cms of pressure.

C-Flex in Respironics doesn't work at all the way EPR in ResMed machines works. While EPR in a ResMed machine gives a full 3 cm drop in pressure for exhaling if the EPR is set for "3", C-Flex set at 3 doesn't necessarily even approximate a drop of 3 cms.

The amount of drop with C-Flex, no matter what the C-Flex setting, is very, very dependent on how forcefully the person breathes out. C-Flex at 3 might not drop the pressure even one cm, if a person's normal exhalations are rather light, or if the person is using a pressure that is difficult for them to breathe out against at all. And "difficult to breathe out against" would be quite relative. What some would call an easy pressure to exhale against could feel like a concrete wall to another person.

There is just too much variation in how forcefully different people exhale, not to mention variations from one breath to another within one person, to say that a C-Flex setting of 3 is going to cause even "approximately" a drop of 3 cms.

With ResMed's EPR at "3", yes. With Respironics' C-Flex...not necessarily, and not even likely (imho) to get very close to a 3 cm drop for most people.