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My first post, One month on CPAP
#1
My first post, One month on CPAP
I'm new on this forum. I'm 57 years old and was diagnosed with severe sleep apnea. I'm Italian and live in Vietnam. The Italian national health service should provide me with a CPAP for free but it takes long time. They ask me to be hospitalized for three full days to calibrate the CPAP!
Meanwhile I bought a Resmed S9 AutoSet with H5i humidifier with a Quattro Fx FFM mask and I'm pretty happy with it. I had to buy it on the fly in Italy because I was leaving and had no doctor telling me how to properly use it. A technician just set it with the basic parameters and gave it to me.
Anyway I managed to sleep with the mask with only some initial anxiety not to be able to breathe in the mask overcome with the use of delorazepam for some nights. Now I haven’t problem ant all, some leakage in the morning but tightening the straps solves it. I always got the smiling face about leakages.
As a newbie I have many questions, some I answered by myself looking around on the net, but two remain:
1- when I use the device I wake up in the morning with a slight chest pain that vanishes after half an hour. When I check the device in the night it's often working at max pressure. I sleep mostly one side and I know this helps with SA but I don't thinks this has anything to do with my chest pain. Is this kind of pain normal?
2- as I said I live in the Mekong delta in Vietnam. There is a Resmed here but I would prefer to buy the spare parts in a western country. Which are the parts more prone to default and after how much Time?
3- As I breath difficultly from the nose I'm using Breathe Right under the mask, any suggestion? they tend to loosen up during the night but at that time there is the pressure helping.
Thanks for answering...

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#2
RE: My first post, One month on CPAP
Hi seamad, welcome to the site! We don't get a lot of guys around here that live in Vietnam. How cool is that!

First, if you haven't done it yet download and install the Sleepyhead software on your computer. Start here, and be sure to read through Robysue's discussion of how to use the software.

As to the pain your experiencing, I suspect its a temporary thing. One thing you could do is change the EPR setting on your machine which allows for a little lower pressure on exhale than inhale. I have mine set to "2" which works well for me. You can set it to 1, 2, or 3. Try 3 and see how it goes.

I forgot what else you asked about, but lets start by you getting your data on the computer and let us know what your AHI results, your leak numbers, and your min/95%/max pressures are.

Good job getting started on the therapy.
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#3
RE: My first post, One month on CPAP
(07-09-2014, 11:06 PM)seamad Wrote: Now I haven’t problem ant all, some leakage in the morning but tightening the straps solves it. I always got the smiling face about leakages.
welcome to the forum, seamad
smiley face is good start, 70th percentile leak is less than 24 l/m, also you want check screen sleep report numbers, ahi, leak and pressure. numbers gives an idea how the therapy is working and if pressure need any adjustment
resscan and sleepyhead software download link http://www.apneaboard.com/forums/Forum-P...-and-Links

if you have not done already, get the clinical manual, the manual tells you everything you need to know about machine settings (while browsing machine setting, ensure 'sleep quality' set to 'on' so the machine report efficacy data), available via email http://www.apneaboard.com/adjust-cpap-pr...tup-manual
s9 setup explained in pictures and videos http://www.apneaboard.com/resmed-s9-cpap-setup

chest pain, might be nothing to worry about but see the doctor to make sure.
do you need the strips with full face mask, you can breathe through your nose or mouth with full face mask

as for CPAP, masks, and parts, suppliers #2 and # 10 ship resmed stuff internationally (#2 don,t sell mask parts separately)
suppliers list http://www.apneaboard.com/forums/Thread-...plier-List

Edit: SleepyHead Software - Beginner's Guide, Questions, Answers & Discussion
http://www.apneaboard.com/forums/Thread-...Discussion
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#4
RE: My first post, One month on CPAP
Hi seamad,
WELCOME! to the forum.!
If your chest pains persists, you might see your Dr. just to make sure everything is ok.
Hopefully, things will get better for you as you continue the CPAP therapy, just stick with it.
Hang in there for more suggestions and best of luck to you as you continue your CPAP journey.
trish6hundred
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#5
RE: My first post, One month on CPAP
Thanks for your prompt answers and for the warm welcome.

I downloaded Both SleepyHead and Rescan and tested the second one till now. Here are the results of the Rescan program and the the exams that started it all.

[attachment=937]
[attachment=936]

On the 28 of August I will be hospitalized for 3 days in a Sleep Clinic where they will set the proper settings on mi APAP or on a CPAP they will give me.

I cant understand why I still have apnea if I use an APAP, Are those the ones the device cannot solve?

Thanks for all the links you sent me, I will read them all. It seems to me that SleepyHead has a better documentation on how to understand the results than Rescan.

As for the chest pain I'm not overly worried, I suffered a myocardial infarction when I was 36 y.o. and this pain is quite different.

If you should leave for a real long vacation to a country where you cant get spare parts for your device, which ones would you bring with you?
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#6
RE: My first post, One month on CPAP
(07-11-2014, 10:21 PM)seamad Wrote: If you should leave for a real long vacation to a country where you cant get spare parts for your device, which ones would you bring with you?
Good question, beside the machine, humidifier and plug adapter for that country, I take extra filters, extension cord, spare mask and cushions, headgear, hoses (climate line and slim line hoses) and SD card

As for 'I cant understand why I still have apnea if I use an APAP, Are those the ones the device cannot solve?'

APAP cannot prevent all apnea events or CPAP for that matter, some events are scored while you,re awake and that skew the results somewhat
your machine setting are set wide open 4-20 and pressure stats are on the high end, you might need talk to the doc about raising the minimum pressure but that probably get sorted out at the sleep clinic

You also wrote [On the 28 of August I will be hospitalized for 3 days in a Sleep Clinic where they will set the proper settings on mi APAP or on a CPAP they will give me]

Why 3 days, are they,re doing more than titration?




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#7
RE: My first post, One month on CPAP
Hi Seamad,

Just keep things where they are until your August titration. Your leak numbers are for the most part great, and your events - could be better, but are not bad for where you're at.

Likely, you will have Apnea from now on. What the cpap/apap machines do is to resolve the obstructive events so that they are greatly reduced, or eliminated. Having done that, you will begin to feel better because your body will be getting good, restorative sleep for once.

I doubt the chest pain you describe is anything other than normal getting used to cpap stuff. But you will want to explore it with the docs if it keeps up.

As to the spare parts? Basically take a healthy supply of consumables. Masks, filters, air hose. Even perhaps a spare humidifier tank. But that's about it. There really isn't much in the way of spare parts for the machine itself. You could take a spare machine though.

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#8
RE: My first post, One month on CPAP
You do seem to do better sleeping on your side. This is often true.
Your blood oxygen desaturation is of concern. You dropped rather low.
Some doctors induce oxygen from a concentrator into CPAP flow to help keep O2 levels up.
Avoid the delorazepam if you can. It lowers respiratory drive; and relaxes muscles that keep the airway open.
You will always have some apneas even on an APAP machine.
As for nasal breathing, generally raising humidity levels helps -- but living in the Mekong delta in summer, in the tropics, the air is already near 100% humidity. ( I speak from experience.)
The machine is running "wide open" at 4 to 20 cm-H2O. Your pressures are near 20 cm-H2O which is the max the machine can go to.
It might help if you raised the 4 to 8 or 10. Then it would start out closer to therapy pressure.
You bought the machine in Italy -- so it's internal clock is set to CET (UTC+1.) You should get into the menus and change the clock to Vietnam time (UTC+7) since the machine starts a new day when the clock hits 12:00 (noon).

Cordiali saluti
Admin Note:
JustMongo passed away in August 2017
Click HERE to read his Memorial Thread

~ Rest in Peace ~
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#9
RE: My first post, One month on CPAP
(07-09-2014, 11:06 PM)seamad Wrote: 2- as I said I live in the Mekong delta in Vietnam. There is a Resmed here but I would prefer to buy the spare parts in a western country. Which are the parts more prone to default and after how much Time?

Masks and hoses are interchangeable, you don't have to use ResMed just because you have a ResMed machine.

You will need ResMed filters for your ResMed machine, though.
Sleepster

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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#10
RE: My first post, One month on CPAP
(07-11-2014, 10:21 PM)seamad Wrote: I can't understand why I still have apnea if I use an APAP, Are those the ones the device cannot solve?

Hi seamed,

What is the Central Apnea Index and the obstructive Apnea Index which your machine is reporting? (In the Italian language I am not sure what IAI and AI would signify in the ResScan summary statistics.)

If more than half of your apneas are central, it may be helpful to lower your Max Pressure setting a little, even though this would likely increase the number of obstructive apneas.

On the other hand, having a few central apneas is usually no big deal. In the beginning weeks of therapy, patients sometimes have more central apneas than obstructive apneas, but these often gradually go away after a few weeks or months, as the body becomes accustomed to breathing under pressure.

I suggest lowering the max pressure may be helpful if it reduces the overall AHI (average number per hour of all apneas plus hypopneas), or if it reduces to bearable levels other symptoms like aerophagia (air swallowing) or eliminates problems with balance or vertigo or hearing loss or discharges from the tear ducts.

Regarding the setting for Minimum Pressure, your machine is spending at least half its time above 14. If I had pressure data similar to yours and was using your machine, I would probably jump the Min Pressure to about half the highest pressure the machine is reaching each night, and then I would walk the Min Pressure higher by 1cm H2O every night, until the Min Pressure is at least within 5 cm H2O from the highest pressure which the machine is actually using each night.

On ResMed machines, the Min Pressure is treated as a target which the machine is slowly trying to return to (between obstructive events). So. if the Min Pressure is much lower than the needed therapeutic pressure, having the Min Pressure so low will significantly decrease the average pressure the machine uses, which would likely increase the number of obstructive events.

What setting for EPR are you using? Using EPR (Exhalation Pressure Relief) may influence how many central apneas we will have. Often, lowering or turning off EPR may lower the central apnea index, but may also be less comfortable and may also increase the hypopnea index.

By the time of your in-hospital titration, if the Central Apnea Index is not lower than about 5 then you may need a more expensive ASV (Adaptive Servo Ventilator) type of CPAP machine, which is able to treat central apneas as well as obstructive apneas.

In any case, before the titration starts, I suggest you ask that, if the needed therapeutic pressure turns out to be higher than 15, that you will be switched to bi-level therapy.

Here is a link to a good article which discusses why some patients need bi-level therapy. Explains UARS and Respiratory Effort Related Arousal (RERA) events, and why some patients continue to suffer excessive daytime sleepiness even though they are using PAP treatment and have low AHI numbers, and how bi-level treatment may be able to solve this:
http://www.apneaboard.com/forums/Thread-...light=UARS

However, sometimes bi-level therapy will increase the number of central apneas we have. In that is true in your case, perhaps ASV therapy can be used, or perhaps bi-level therapy can be used if the number of central apneas it causes are small enough to ignore.

With your pressure maxing out night after night, I suggest taking precautions to guarantee you are never sleeping on your back. For example, I wear a teeshirt with one or two tennis balls in pockets sewn on the back along my spine, between the shoulder blades and higher, so that WHEN I roll onto my back I awaken enough to keep rolling until I am on my other side.

When the needed pressure is 15 or higher, it is common to prescribe bi-level machines, so that the exhale pressure (EPAP) can be lower, which is usually much more comfortable. Also, bi-level machines (including ASV machines) usually allow the pressure to go as high as 25 cm H2O if needed. (Which you may need.)

If getting a bi-level machine, I recommend an Auto model, such as the S9 VPAP Auto or the Philips Respironics System One BiPAP Auto with Heated Hose. The S9 VPAP Auto would be able to share the same power adapter and humidifier and air filters (and hose and mask, etc) as your S9 AutoSet.

(If you didn't already own an S9 machine, I would suggest a preference for the PRS1 BiPAP Auto, because it has a couple nice features which the "equivalent" ResMed machine does not have -- namely, the Pressure Support will slowly auto-adjust itself to minimize obstructive events, plus PRS1 bi-level machines have a second type of exhalation pressure relief called BiFlex which can provide additional pressure relief during exhalation without increasing the AHI.)

For now, look at the detailed data in ResScan to see how long your apnea events are lasting. By the way, personally, I would be less concerned about a central apnea event which lasted fairly long (like 30 or 40 seconds) than I would be concerned about an obstructive apnea which lasted the same amount of time, because with a central apnea as soon as I tried to breathe, I would start breathing again. But with an obstructive apnea, there would a struggle to breathe, and I think the stress on the body would end up being greater. (Just my opinion.)

Good luck, and take care,
--- Vaughn
The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies.  Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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