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New to CPAP. unhappy with sleep therapist. Advise needed.
#1
New to CPAP. unhappy with sleep therapist. Advise needed.
Hi All,
Firstly I want to thank people on this forum for keeping it well organized, civil and being an excellent resource for people who are new to the whole apnea thing. I have personally learnt a lot using reading this forum and for that I am very thankful.

I am a 31yo male from Australia who was recently diagnosed just before Christmas with severe sleep apnea. After the diagnosis, the clinics shut for the Christmas break- you can imagine my anguish waiting for the APAP titration appointment that I could get only after the break. I have now started my trial with a phillips dreamstation APAP.

My diagnosis was Severe OSA- 65 average AHI per hour; 90 AHI when supine and 97 AHI in REM. Following this, I booked an appointment for an APAP titration and was given a Phillips dreamstation APAP that was initially set at between 6 to 20 cmH2O. I have no problem with use as it is comfortable and I do not suffer any mask leaks. My AHI per the machine was:
- 1st night: 7.4 AHI
- 2nd night: 9.8 AHI
- 3rd night: 9.6 AHI
- 4th night: 8.8 AHI
- 5th night: 9.8 AHI
- 6th night: 9.6 AHI

On 7th night, I had my appointment with the sleep therapist and she said the apnea was under control and no need to worry, treatment is going well. I disagreed with her as my AHI was still around 9.8 on average and my 90% pressure was around 12 to 14 cmH2O (I didn't note down the daily 90% pressures but they were within that range). I told her that I wanted to have an AHI of less than 5 and to increase the minimum pressure. My requests were based on the information gained in this forum. She seemed to rely too much on  the APAP doing its thing and didn't care that my AHI was above 5. I forced her to change the minimum to 8cmH2o and last night I had an AHI of 6.4 which is my lowest yet.

My question is this- Am I justified in being a bit concerned that my therapist doesn't really care that my AHI is at 9.8. I feel she should aim for less than 5 AHI. I feel as though she just wants to sell a machine. If you think my concern is justified, I will change the therapist. 

Would appreciate any advise give.
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#2
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
Well it really comes down to is can you work with her? If she listened to you and raised the pressure I'd say that was a plus. What you don't want to do is get another therapist who turns out not to listen to you at all.

Just something to think about.
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#3
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
The standard treated AHI would be <5, as you have already learned.

It's possible your sleep specialist is of the mind, like you, that trial and error is in order. I would say the most helpful kinds of sleep therapists are the ones that listen to you and feel comfortable participating with you in the process. This is true for any medical issue, IMO.

I'm too much of a newbie to offer number adjustments, but I'm quite certain someone will! There may also be a machine recommendation. Do you know why the Respironics was recommended over a Resmed?


To get you started....if you use SleepyHead already, provide some charts here. If not, get instructions here and start recording. You'll need an SD card and a card reader on your computer.

You might also screen shot your sleep study, upload it to Imgur, and link it via thumbnail here.


------
With all of that, I have some similar issues with my sleep specialist regarding her lack of rigor in diagnosing and responding to a less-than-treated AHI.
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#4
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
I think I would be sounding off like yourself if that was her attitude.
I might even increase the pressure slightly more, but you need to download Sleephead and post some data charts first so as you can get some advice from the guys here.  You can also request a clinicians manual from here to set the pressures yourself and treat yourself with advice given.
However, you should keep in mind that we are not doctors and any advice given should be taken as if we know nothing.
The Philips machines I am led to believe are a fraction slower at reacting to events than ResMed, but they should still get you good results.
I would have gone for a ResMed Airsense10Autosense.  However, the Philips should still get you down below 5 with a bit of good advice.
Get Sleepyhead and post some data so we can have a look at what is going on and where your pressures should be, I don't think you are that for off now.
>^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^<
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.

I am just a long term user of c.p.a.p. and therefore I have some experience in using these machines and equipment.

However, I am NOT an expert, so advice given should be taken as given in good faith only and NOT medical advice.

Every journey, however large or small starts with the first step.   Coffee
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#5
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
(01-10-2018, 07:50 PM)Walla Walla Wrote: Well it really comes down to is can you work with her?  If she listened to you and raised the pressure I'd say that was a plus. What you don't want to do is get another therapist who turns out not to listen to you at all.

Just something to think about.

There is that to think about as well, get some data and go back and get her to adjust the machine.
>^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^<
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.

I am just a long term user of c.p.a.p. and therefore I have some experience in using these machines and equipment.

However, I am NOT an expert, so advice given should be taken as given in good faith only and NOT medical advice.

Every journey, however large or small starts with the first step.   Coffee
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#6
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
"90% pressure was around 12 to 14 cmH2O"
If they were my numbers, with a dreamstation I would want my min pressure on 10 and see how it went. They are slow to respond.
http://www.apneaboard.com/dreamstation-c...structions

I would get the resmed for her, it has 2 algorithms and you can chose which one works best for you.
new http://www.apneaboard.com/wiki/index.php...re_success
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
From machine or charts for auto-cpap, set the min 1cm below median pressure, or 2cm below 90/95%. max at 20cm for now. Forum will help you fine tune settings
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#7
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
Hi SIRSnoralot,
WELCOME! to the forum.!
Good luck with CPAP therapy, hang in there for more responses to your post.
trish6hundred
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#8
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
(01-10-2018, 07:53 PM)Sleep2Snore Wrote: I think I would be sounding off like yourself if that was her attitude.
I might even increase the pressure slightly more, but you need to download Sleephead and post some data charts first so as you can get some advice from the guys here.  You can also request a clinicians manual from here to set the pressures yourself and treat yourself with advice given.
However, you should keep in mind that we are not doctors and any advice given should be taken as if we know nothing.
The Philips machines I am led to believe are a fraction slower at reacting to events than ResMed, but they should still get you good results.
I would have gone for a ResMed Airsense10Autosense.  However, the Philips should still get you down below 5 with a bit of good advice.
Get Sleepyhead and post some data so we can have a look at what is going on and where your pressures should be, I don't think you are that for off now.

Yes, I did make it clear on my first appointment that I wanted the RESMED machine. I got stuck with the dreamstation because it was the only one with a cellular modem they could access data from wirelessly. Ive been reading this forum and have read that the resmed is more aggressive. I am very comfortable with the APAP and I do not believe the resmeds more aggressive response would cause me any discomfort. I'm trialing the resmed on my last week.
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#9
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
(01-10-2018, 08:58 PM)ajack Wrote: "90% pressure was around 12 to 14 cmH2O"
If they were my numbers, with a dreamstation I would want my min pressure on 10 and see how it went. They are slow to respond.


I would get the resmed for her, it has 2 algorithms and you can chose which one works best for you.

Thank You Ajack. The links were very informative. It explains what she did yesterday to change the settings. Ill lay off from changing it just yet as they can monitor it remotely. The next steps are another week on the apap, then a fixed pressure trial and then on last week, I asked for a resmed trial. I'm gunning to get an apap but she says whatever casues less ahi.
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#10
RE: New to CPAP. unhappy with sleep therapist. Advise needed.
Welcome to Apnea Board.

Just remember that a lot of the procedures quoted here relate to the American situation and are not relevant here in Oz. You are perfectly entitled to purchase any machine you want from whomever you want. If your health insurance is like every other one I've looked at, they won't care what type of machine you have - the will pay you a fixed rebate which varies between about $500 to $800 depending on the company. In addition there is no requirement for a prescription.

It sounds like your therapist is following a standard procedure of trialling you on auto-adjusting pressure before locking you in to a single fixed pressure. This is a very common approach, but in my view is very sub-optimal. (I'm not a doctor by the way, just a part time astrophysicist Smile ). You need to know that one of the Dreamstation models (not sure which) gives you a period of autoset following which it reverts to fixed pressure only. You definitely do not want to get stuck with one of those.

Regarding the target AHI, there has been some pressure in the States to make 10 the target as this is easier to achieve and requires less / fewer interventions by the therapist. Most people who actually experience apnea will tell you that the lower you can go the better, with even 5 not really being low enough for most people. I think a more realistic target is 2.0 or lower.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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