Polysomnogram GREAT - Home use HORRIBLE

[blueadler]

Hello brand new to CPAP and this forum. Got my CPAP 3 days ago ..... horrible experience.
Heres the tale

5/5/2010 >> sleep clinic study

5/7/2010 >> Results - Severe sleep apnea - Nadir Oxygen 59%; apnea/hypoonea index of 34, with 34 apneas and 125 hypopneas. Most severe during REM. PLM index 45.1 per hrwith 3.4 PLM arousals per hr. Recomendation for fully attended CPAP titration polysomnogram as soon as possible

5/19/2010 >> fully attended CPAP titration polysomnogram
This was the best nights sleep I can ever remember. Not sure of the machine, nut the mask was a ResMed Swift FX/ The technician was very thorough in getting the mask fitted and I also used a chin strap. Felt great the next morning. My impression was that the technician had made adjustments throughout the nite to arrive at a suitable "pressure" .... whatever it was worked.

6/9/2010 >> finally gor the study results and recommendations after calling repeated. Having discussed the test results with Primary Care Physician and several CPAP users I was kinda concerned about getting this taken care of right away .... helll .... I was scared !!! ... still am...... sleep setting up in chair most nights. Recommendation was for CPAP titration at 12

July and August --- welcome to insurance company hell. Tried to find out how much I would have to pay of the equipment and supply costs. I'll look to another thread to rant on that .... I'll just bet a lot of folks here have gone through the cirular non-logic between insur CO and DME and patient over copay,allowavle, billed etc.

Finally got the ResMed S9 CPAP with humidity and Swift FX mask on Sept 9, 2010. The most miserable night in years. Nothing like the sleep lab. By the time the unit ramped up to 12, I was ripping the mask off. Tried several times .. actually got to sleep for 40 minutes and woke up fighting tubes, unable to exhale. finally turned it off. For the next 18 hours had constant pain about 3 inches below left and right armpits, increasing on inhaling.

I understand some folks have difficulty adjusting, but I cannot understand the severe difference between the cllinic and home use. I tried again on Sept 10, 2010 ... finally gor two hours sleep, but my wife woke me and said she could hear air leaking from across the room .... guess I was cheating. When I adjusted the mask pillows, I was back to the previoous nights experience. I do not recall anything close to the volume of air or the resistance to exhale during the study nothing close at all !!!

Calledthe DME and talked to Resperatory Therapist. She seemed to be expecting my call and was definitely not happy (wasn't blaming her, but I wasnt mincing words about the esperience either) At any rate, she says the clinic typically "fiddles" with the pressure all night and prevents study subjects rom having "incidents ... I have no idea if that is BS or not. tomorrow, Monday Sept 12, 2010 I will start what I fear will be another journey into insurance hell

Any advice ... warnings ....... where to go? how to get there? be nice (please)

thanks ... i hope

[chunkyfrog]

How wonderful you are giving it (and yourself) another chance!
Keep in touch with the people on this forum.
There are many wonderful and knowledgeable people here who have lots of helpful hints and words of encouragement.
I, myself am a relative newbie (since April this year)
I learn something new every time I get in here.
Remember that every one is unique--not all suggestions will fit; some will be right on the money.
Welcome to the adventure!

[elena88]

yikes, you must be pretty freakin dissapointed that it didnt go like the sleep study night..
Im so sorry about that..

I have read about this happening to some people, I was titrated at home, so I dont know what the difference would be.. However,
your experience at home sounds exactly like mine. I was going to quit the first night, it was horrendous, but I had nothing to compare it to.

YOu do..

Do do you have a cpap or an apap? I have an apap.. you can run it both ways..

you should get a copy (the three to ten page summary) of your sleep study, so you can see what happened.

Do you have the software to download for your machine so you can view what is going on?

that would also be very helpful.. but do know, that it does get better, and you probably will learn to create whatever the tech did
by looking at your therapy information from your machine..
Untill then you might try to practice with your mask during the day..
Also, does your machine have an exhalation pressure relief function? It sounds like you got blown up quite a bit from the pain in your sides..
Its going to take some time to get used to that pressure, and sounds like you really need some EPR or c flex or whatever is on your machine
turned on the max so its easier for you to breath against the pressure.. ARE you sure its the right pressure? sometimes the person setting the
machine sets it wrong..

[sleepycarol]

Which S9 model do you have -- there is more than one. How long is your ramp time and where does it start? If it is starting too low for you it will make you feel like you aren't getting enough air. It didn't take me long to stop using the ramp.

Do they have the easy breathe technology turned on? If so what is that setting?

[billbolton]

she says the clinic typically "fiddles" with the pressure all night and prevents study subjects rom having "incidents ... I have no idea if that is BS or not.

Typically what happens during a titration study is that the flow rate (aka pressure) is increased until a point is reached at which the further increases do not produce any significant change in the overall AHI score.

Cheers,

Bill

[Kevin G.]

There are several goals hear 1) improve your treatiment and 2) minimize the insurance grief.

When dealing with the insurance carrier and the DME be clar how much you can afoard to pay out of pocket. It may not be fair but sometimes it may be worth it to pay for equipment yourself and then try for insurance reimbursement. This also puts you in better control.

Rather than looking to the RT or DME look to your doctors. You may want to check witha sleep specialist.

Learn how to adjust your machine. You can find out how on this web site. Also download the software to give your doctor better information to help you.

While waiting for the doctor approintment try some experiments.
--Enable the EPR feature if it is not turned on.
--If you have the Autoset version of the S9 enable the APAP function. Presssure ranges of 4-20 are common. If you want to be conservative consider 8 to 16 cm
--Try changing your pressure in small steps. If no improvement after 3 to 4 cm increase go back to the original 12 and potentially try slightly lower pressures.
--Try sleeping on your side or with your back slightly elevated.

Do one thing at a time. If you are miserable you have little to loose and it sure beats doing nothing until you can see the doctor.

Consider contacting your DME to find out what it would take to change to the Autoset version of the S9.

Regarding mask leakage: some times you get a better fit if the mask is not too tight..

Sometimes it takes a little time for your body to get used to sleeping with the machine.

[slaaplekker]

Basically the sleep study is to 1. figure out if you need therapy and two to figure out what pressure is required to be effective therapy. So as the DME said they do fiddle with the pressure trying to find the lowest pressure that will do the job of eliminating OSA. So you may not have been at the diagnosed 12 CM pressure for an extended period of time. Second their equipment is quite a bit different then yours but the good news if I understand the model of APAP you have is that yours can be changed to make it more comfortable to exhale and to give you a range of pressures to make breathing easier. It also can provide you with information as to how effective your therapy is.

Having said all of that you will need to spend some time reading here and asking questions to get up to date on what your machine can do for you and trying different options. I wish I could say it will be easy but if it was going to be easy for you would already know that. I envy those who adjusted easily and have know problems since I'm day 107 of therapy and ever night is challenge for me. I keep trying new things, mask, hoses, mask liners, hose management, just added aroma therapy and still haven't come on the magic combination.

But you've already taken the first step which is to ask for help which is great. There are lots of folks with similar machines and generaly great advice to try, the important thing is not to give up. I keep telling myself that each day.

The other thing I noticed on your sleep lab results was the Periodic Limb Movement stats. Those are significant just by themsleves and will normally have a negative impact on your quality of sleep even once you get the APAP therapy working for you. So you will need to follow up on getting that treated. PLMD wakes me up all of the time and is very detrimental to quality and amount of sleep I get. I also have Restless Leg Syndrome they can go hand in hand - 80% of the people with Restless Leg Syndrome also have PLMD but not the other way around. If you are lucky you will only have the PLMD which is bad enough.

Take it one night at time and the best thing you can do is get educated as quickly as you can. It won't actually fix the problems but it gives you a fighting chance at fixing them yourself since depending on the medical system and DME is not usually effective.


Good Luck
John

[elena88]

I hope they gave you the resmed s 9 autoset right? its an autopap, not a cpap?

If you have the autoset, youll be able to figure this out and make it work, just hang out here and everyone will help you
out, and teach you use the machine they gave you..

MAKE SURE YOU HAVE AN AUTO AND NOT A CPAP..

if you have a cpap, trade it in as fast as you can for an autoset.

come back, and I can give you some links to threads of people who just got new s nine autosets..

[jmcd]

Make sure your EPR is set to 3. That will help with the exhaling. I have the same CPAP device and mask --the hardest thing for me to get use to was the feeling when exhaling. I also find I have to work at relaxing when I start my therapy. I give myself time to relax before going to bed. For me that might be reading or watching tv in bed; showering, listening to music, etc. I also am using aromatherapy with my CPAP. I've done a couple of different things including vanilla extract on a cotton pad or a little Vick's Vapor Rub on a little piece of foil that I set behind my machine (right under the air filter). I've purchased the Pur-Sleep kit sold by cpap.com too and am enjoying it. Anyhow, all of this helps me relax so I can breath normally (I found myself breathing a little faster than normal when I started my therapy).

Are you using the right size pillows with your FX?

Hope it gets better for you very soon.

[Julie]

One tip - you said "by the time.... ramped up to 12". The great majority of us find that the ramp is best turned off altogether or at least set to start at no lower than 6 and only to run for as short a time as possible for us to be comfortable with it as trying to breathe at the lower numbers is almost impossible, plus it's not "therapy" in any case, just desirable by some whose prescribed setting is so high that going straight into sleeping at that number (often more than 15) would be too drastic a feeling for them, but you can just turn it off and not bother at all if you're comfortable with the initial 'blast'.

[Fogster]

I am very much a rookie as this is my 9th night with my CPAP. I have experienced the same issues you are having.

1. Fighting the exhale: I have my C-Flex setting at 3, the lowest amount of exhale pressure. The first night I took off the mask and the next morning I told my wife my machine was broken. It was not nearly this hard during my home study. I was fighting to exhale. Now I don't have that feeling at all. I think it might be getting used to it as this feeling decreased night after night. Unless you have a mask leak.

2. If your nasal pillows are leaking, try moving up a size. It seems counter to what you would think, however this made a huge difference both in noise/leak for me. It also make a big difference in the feeling of fighting the exhale.

[blueadler]

To everyone that reponded --- thank you so very much - sorry my response is late in the day, but I spent the day covering a lot of bases related to this

Regarding the various suggestions; most are addressed in this update.

Called BCBS insur and explained difficulty. I also explained the difficulty in dealing with the reperatory therapist employed by the DME. When I told her my problem and that I was considering returning the system she said I would have to sign an AMA (Against Medical Advice) On my response that I did not intend to sign ... ? .... she hung up on me. (I really am a nce person .... really ... I have two woderful dogs and a fantastic wife that love me and don't bite me ... at least the dogs don't The BCBS contact agreed on the return (and not signing) and suggested I consult my primary and start the process for a different system.

Following suggestions from folks here, I went to the sleep clinic and got the full set of information from the polysomnogram. What I originally had was the one page initial assessment and the one page diagnoses/recommendation. That recommendation was for 12 cmH20 ... NO OTHER NUMBERS. when I reviewed the full polysomnogram data it showed that the technician had started at 5/2 (hmmmm whats that .. /2 part) and eventually settled on 12/3. On the next page it showed the 12/3 to be titration at 12cmH2O with CFLEX set at 3. As most of you probably know the "3" means that on exhale the CPAP would reduce pressure by 3 cm. Finally ... this seemed promising

on returning home ... tried to figure out what I could do with the ResMed S9 Elite to duplicate the sleep clinic (12/3) ... went to WWW ... searched ... bunch of reading ... and EUREKA!!! ResMed EPR works like REMstar CFLEX (not identical .. but same end goal >>>>> To Let You freaking exhale !!!) Then I had to find the magic method of accessing and modifying the clinical settings on the S9. You simultaneously press the round knob and the setup button for 3 seconds .... OK ready to rock and roll. While fearing that the "CPAP police" wouldbust down the door ... I proceeded .... Unbelievable EPR was not even on and the system was not set to be patient configurable for the EPR. I have tested (20 minutes) with pressure at 12 and EPR at 3 Much better. I will be trying the sytem tonight at that setting and with a 'short' ramp time.

Tomorrow, I have a doctors appt with primary and will be looking to get a prescription for S9 Autoset with H5i humidifier and ClimateControl lines (getting a bit of moisure in tubes even with humidity set at 3).

Again ... thank you to everyone for the help and advice .... sorry for rambling on ... just really glad to see something that looks like light at the end of the tunnel

nite all

[Janknitz]

Good for you, taking charge of your own therapy. NOBODY cares about it as much as you do. You are smart, and good at figuring things out.

Wishing you peaceful nights very soon.