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Frustrated with recommendations by doctor
#91
RE: Frustrated with recommendations by doctor
The advice you are getting is incredible.

I've hated the OSA treatment process in Ontario all of the over 25 years I've experienced it. Yesterday for fun I read the reviews others submitted for my old sleep doc on rate your doc. Oh my. It wasn't fun. I related to all of them. Dr Inouye enjoy your retirement. I wish you health and happiness.

I've had questions along the way. I used to participate in a newsgroup and learned stuff that scared me. So I use my cpap every night and check performance. I bought my S9 Elite used so I could check my performance daily. I left that newsgoup years ago because it became infected with trolls and good people were attacked and left.

Questions I've had?
* why can't I get an autopap from my sleep doc and do titration at home?
* why did he restrict me to cpap machines only? (suppliers say I would be more comfortable with a machine like yours.)
* Should I monitor oxygen levels in the blood? Would that be a good wellness indicator?

Things I've learned
* I need to use a surge protector always. One saved me; I posted the story here
* I need to be prepared when I travel. I need to prevent loss of my kit.
* I need to have a valid prescription with me for a mask purchase if I need it, or carry a spare mask.
* Heated hoses help me be more comfortable; I sleep better and longer using a heated hose
* Humidifier works; I sleep better and longer using my humidifier
* SleepyHead really helps me monitor my OSA condition
* My sleep doc hated SleepyHead. All he needed was proof my machine was turned on.
* Having a good DME was key to me. Sleep Management Group is my go-to and the office I use is Burlington
*

I respect you for buying your machine, and for having the skill to implement changes that wonderful people here suggest. I think what you're doing is much much better than what I've had happen in 25 years of cpap use.

This forum is incredible. I've been to others. This is the only one that has such active participation and helps with real solutions.
DaveL
compliant for 35 years /// Still trying!

I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

http://www.apneaboard.com/wiki/index.php..._The_Guide

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#92
RE: Frustrated with recommendations by doctor
(10-01-2018, 08:26 AM)allanri Wrote: Screen shot from last night.  (I forgot to put the card back in the machine on Saturday night .. so no data there).


I'm still finding it hard to get used to the ASV, so I have been using ramp.  And as you can see, my hypopnea occur almost always during ramp.  So, I'm not actually that concerned about them.  I'm hoping that as I become accustomed to the machine, I'll be able to ditch the ramp feature. That's what happened with when I first started using CPAP; I started out using ramp, and then, a few weeks later, stopped using it.

Anyway, there were a couple of hypopnea that did occur after the ramp had ended:


Any thoughts on what might have happened there?  

I took the mask off at about 4am.  I had awoken at about 3:30, and was tossing and turning, and found the air pressure too distracting to get back to sleep, even with a short (5 min) ramp period.  I'll keep plugging away with it, though.

During the hypopnea event, the ASV is delivering full pressure support, and it is resulting in partial breaths.  This would likely have been a full apnea without ASV.  It's surprising that you seem to have enough airway resistance that 15 cm of pressure support is not fully satisfying your volume needs.  The machine is working as designed.  The event is preceded by some very irregular breathing and I see a flow limitation before and after the event.  Are you using any kind of positional apnea aid like a soft collar?
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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#93
RE: Frustrated with recommendations by doctor
(08-19-2018, 10:14 AM)allanri Wrote: I will add that I think CPAP therapy has actually made my sleep WORSE, if you consider how many times I'm up at might making mask adjustments, or not able to get back to sleep when I wake up in the middle of the night because of the discomfort, etc.

It ain't easy being compliant but it's worth it.

You are fast-tracking to real solutions.

Key to sleep quality for me is mask comfort and mask performance. Find a source that will let you try masks before you buy.  Sleep Management Group has provided excellent service to me. I've bought about 10 masks there, roughly every six months.  I've probably tried 10 other masks.  My current mask is a ResMed N20 nasal mask. Large, with medium headgear.

I sometimes mouth breath; treatment doesn't work then. So I use a chinstrap (not very well) or a pad under my jaw to position it closed.  During my sleep study 3 weeks ago I was woken up by the tech. He said I was mouth breathing (in spite of my chinstrap I had on) He said to close my jaw. (I did, putting my tongue against the roof of my mouth). He said to tell my brain to keep my mouth closed (strange).  It worked. Waking up he said I could proceed using my mask and strap. (I didn't need a full face mask, and I don't tolerate them at all. Claustrophobia) He said I would get a prescription for a mask and for pressure.  Haven't yet.

The doc thing. Oh my.  My sleep doc caused me awful stress for over 10 years. When he announced retirement he said he had sent reports (which I wasn't entitled to know about or see apparently) to my gp for the entire period.  My gp was a quack. I fired him when I heard this.  Getting a new gp (family doctor) was terribly terribly hard. I found one finally. that gentleman retired recently; I got a referral to a sleep doc he chose because I panicked. 

Changing docs in Ontario Canada isn't easy. In fact it's darn hard. The system is foolishly difficult to live with. My brother in law is an American Doctor, retired. He has provided incentive and advice to Canadian doctors when I needed it He was surprised how restrictive the Canadian system is when he helped me. I believe we don't have Health Care in Ontario anymore. We have Health Management. It's about cost. It's a bipolar system.

Edit: I'm not a victim. I'm learning how to use the regulations and the way the system works to get the results I need. I've done well and got better results working outside the system.
DaveL
compliant for 35 years /// Still trying!

I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

http://www.apneaboard.com/wiki/index.php..._The_Guide

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#94
RE: Frustrated with recommendations by doctor
How is anyone supposed to "tell our brain" to keep our mouth closed at night, while we are asleep? I had the same type of QUACKS telling me stuff like this, that I eventually move to new sleep and ENT doctors. You can practice all you want keeping the tongue to the roof of your mouth and train it to stay there. But in my case, once I'm asleep, my tongue falls back and doesn't stay there. I have to tell you, a lot of doctors seem to just make up stuff to try, and also like pushing problems to other doctors, when they have no solutions for people.
ResMed AirCurve 10 vAuto
Pressure EPAP min 4.4, IPAP 8.4, IPAP Max 18, PS 4.

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#95
RE: Frustrated with recommendations by doctor
Beats me MyronH!
I just know that I got past that and survived. I don't want to wear a full face mask ever. I"ve tried about 7 of them. I'm claustrophobic.

Meantime my sleep study went ok.

I find the Doctor system horribly managed. This was a sleep tech that I talked to.

I've been compliant for more than 25 years. I find my best help is from the DME I finally found. I looked for a good one for years and years.

I sometimes mouth breath. Otherwise, nasal masks work fine. I've used nasal pillows too. I'm currently using a ResMed N20. I had a chinstrap on. Perhaps it had streteched since I bought it.

I get incredible help here from the skilled, caring people.

I know far more about therapy from reading posts here, from using SleepyHead, and from asking questions.

Sorry for the rant. It's hard being compliant.
DaveL
compliant for 35 years /// Still trying!

I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

http://www.apneaboard.com/wiki/index.php..._The_Guide

Post Reply Post Reply
#96
RE: Frustrated with recommendations by doctor
(10-01-2018, 08:48 AM)Sleeprider Wrote: Are you using any kind of positional apnea aid like a soft collar?

I do use a cervical collar.  And I see what you mean about the irregular breathing.  Here's a QuickTIme movie showing a time-lapse of the minutes leading up to and following the hypopneas: https://www.dropbox.com/s/72utm2et4wx04a...a.mov?dl=0.

Where are you seeing the flow limitations? In the flow rate graph?  The flow limitation graph doesn't show anything ...?

I've looked back on other nights, and I have had several hypopneas outside of the ramp period:

[attachment=8606]
[attachment=8607]

Here's the time lapse of each:https://www.dropbox.com/s/fhljitev8jjj0qr/Hypopneas%20Sep%2025.mov?dl=0 I think for the first of these, I might not have worn the collar; but I'm fairly certain I was on the 2nd.

Also, I have switched from using an AirFit F20 mask to a DreamWear nasal mask the last few nights.  It's definitely more comfortable.  I can't imagine that would make a difference.  

Perhaps I need to increase the minimum EPAP again?
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#97
RE: Frustrated with recommendations by doctor
My chinstraps stretch then don't work. They also slip off my bald spot then don't work.
I'm really interested in finding a solution that's comfortable.
What do others do?
DaveL
compliant for 35 years /// Still trying!

I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

http://www.apneaboard.com/wiki/index.php..._The_Guide

Post Reply Post Reply
#98
RE: Frustrated with recommendations by doctor
Another kinda crummy night.
[attachment=8642]   

Based on what sheepless said in a recent post, I tried increasing my EPAP min a little, to 7 cm, and reduced my PS.  Was hoping to (a) keep hypopneas down, and (b) feel more comfortable with the maximum pressure. Although, if I understand how this all works, with an EPAP max of 15, and a PS max of 10, I'd still end up at the machine's maximum of 25 cm if I had difficult OAs or CAs, correct?  That said, it seems my IPAP max was just below 20.  

And again, I had to take the mask off at about 3:30 for a few hours, because I couldn't get back to sleep with it on.  I did put it back on at about 6:15 for a couple of hours, and did manage to get back to sleep.  

Am at a loss for what to do to get rid of these hypopneas, and also how to balance whatever I do for that with whatever it is I need to do to not rip my mask off at 3:30am ...

Allan
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#99
RE: Frustrated with recommendations by doctor
Alan, I think we should start experimenting with some alternative settings and see if we can get some relief for you. Keep in mind this is really trial and error, and we may try some things that are better, and some that are worse, and it's up to you to decide what works. For starters, I think we can drop the PS max to 12. Your discomfort with the higher pressure swings is the main reason, and we'd like to get a feel for whether a lower PS max is workable. I don't agree with the higher EPAP because the auto ASV is moving within a small range and I don't see a relationship between the hypopnea and EPAP for you. I do think higher PS min may be needed for the hypopnea. Let's take that slowly and try 3.4 cm to start.

So if you're game, let's move PS min to 3.4 and PS max to 12 and see if that is more comfortable.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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RE: Frustrated with recommendations by doctor
Sounds good, Sleeprider. Thx.
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