Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Just tried ASV and I hate it. Help?
#61
RE: Just tried ASV and I hate it. Help?
Broomstick, sounds like you feel a lot more relief when you sit-up. Have you tried an articulating bed or wedge?
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.
Post Reply Post Reply






Donate to Apnea Board  
#62
RE: Just tried ASV and I hate it. Help?
(10-22-2019, 05:13 PM)WillSleep Wrote:
(10-21-2019, 09:01 PM)Broomstick Wrote: Tomorrow we are gonna do an experiment. After I wake up and can't breathe with the machine anymore, I'm gonna set it to a CPAP of 20, press it against my face to breathe in, take it away to breathe out. If that doesn't work, 25. If that doesn't work, no machine is gonna help me.

A couple of additional experiment steps ..
 
1).  Cant breath or more constrained breathing through a nasal mask but at that same moment can breath (or breath better with mouth wide open and trying to mouth breath)  >> Then there is an restriction above the mouth.

2).  Cant breath well lying on my back or just sitting up but can breath better while lying on:
  • Left side
  • Right side
  • Stomach
  • Face down in a with my head in the cradle of a massage table
You may locate at least contributing constrictions or have shown that the issue is less likely from a soft tissue blockage anywhere above the jaw.   

Maybe a new/better for you Doc?

Best of Luck!

WillSleep

I love experiments. I really appreciate your help more than anyone and I apologize for blowing you off. But my mind is on other things right now. Read below. I'll try to get back to you.  Smile

(10-22-2019, 06:10 PM)Sleeprider Wrote: Broomstick, sounds like you feel a lot more relief when you sit-up.  Have you tried an articulating bed or wedge?

I went out and bought a recliner last week. Didn't help.



I have a couple things to say. 1. The people at the pulmonology place I was going to are extremely cruel. I'm experiencing something very very bad every day that I believe is deserving to be put ahead of the line to see a doctor immediately. This isn't a case of entitlement, my problem is just that bad. If I don't get help SOON, I may lose the ability seek help myself. I hope they all experience what I am going through someday. 2...

The problem I'm experiencing appears to be shallow breathing. This explains everything. 

-It explains why the machines aren't detecting a problem. "sleep studies cannot diagnose shallow breathing". 
-It explains why CPAP made my problem WORSE. See image. "...because the weak expiatory muscles can't exhale against the CPAP air pressure." I would wake up unable to breathe in or out much after 90 minutes. 
-It explains why ASV (with some form of pressure support) allows me to last much longer. (5 hours often, but many times less)
-It may explain why I still struggle to breathe after waking up. How I feel like its difficult to HOLD my breath in (while laying down) and it wants to snap back out. Perhaps diaphram isn't moving much and its only chest breathing for me after waking up.
-It may explain why its easier to breathe sitting up. Diaphram, which is weak, or stuck on "not working mode", is probably allowed to fall down and let lungs expand more.
-It may explain why I often wake up in extreme fear. If body is filled with too much Carbon Dioxide, it triggers extreme fear and anxiety.


FEW websites (and doctors) admit that Central Apnea is NOT just a complete lack of breathing, but also includes very shallow breathing.

If thats the case with me, then ASV, which is designed to treat centrals, will NOT help me. I understand how it triggers a breath when detecting a complete pause. But I don't see how the machine can fix shallow breathing when it seems to have no idea that I'm breathing shallow.

BIPAP is the only machine (to my knowledge) that is designed to assist with breathing for people with weak breathing muscles. I view having weak muscles as not much different than muscles that are simply not getting the message to work hard enough.

I hope and pray that BIPAP or some sort of non-invasive ventilator will help me. Can't wait to ask the doctor about this tomorrow. Wonder if he will say that the ResMed machines are garbage for this sort of condition and I need an actual commercial grade ventillator.

So yeah, tomorrow I will meet a hopefully better doctor. I kind of requested to see a non-sleep pulmonologist because the sleep doctors need to get it out of their heads that I just need a pressure change or an extra pillow. All they know is their checklist for sleep apnea. Well my problem is not on that checklist and I need a doctor who will think outside the box and imagine why can't I breathe and take action instead of resorting to a checklist. 

I now have a lot more info to bring (Instead of simply saying "It's hard to breathe) and am not gonna stand for a doctor scheduling for me to come back in a month.


Attached Files Thumbnail(s)
   
Post Reply Post Reply
#63
RE: Just tried ASV and I hate it. Help?
If you need a machine to breathe for you for any reason, no CPAP based machine is the right one. If that's the case, you're going to need a real ventilator such as the ResMed Stellar or Astral. If true, scratch off any CPAP APAP BPAP ST or ASV; these are not breathing ventilators the breathe for you. I'm not saying you do or don't as that's for a doctor to make that medical determination.

I would suggest you take a sheet of paper and note your concerns, all the symptoms you experience, the results of any machine and settings tried, and any other thoughts you have, then find a doctor that will discuss all this with you and it needs to be a doctor that you can see now even if it's your primary care. With a doctor on your side, things might be expedited with other health care professionals. It will require you to calmly and rationally discuss it with a medical professional that will listen and can take action.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#64
RE: Just tried ASV and I hate it. Help?
(10-29-2019, 11:05 AM)SarcasticDave94 Wrote: If you need a machine to breathe for you for any reason, no CPAP based machine is the right one. If that's the case, you're going to need a real ventilator such as the ResMed Stellar or Astral. If true, scratch off any CPAP APAP BPAP ST or ASV; these are not breathing ventilators the breathe for you. I'm not saying you do or don't as that's for a doctor to make that medical determination.

I would suggest you take a sheet of paper and note your concerns, all the symptoms you experience, the results of any machine and settings tried, and any other thoughts you have, then find a doctor that will discuss all this with you and it needs to be a doctor that you can see now even if it's your primary care. With a doctor on your side, things might be expedited with other health care professionals. It will require you to calmly and rationally discuss it with a medical professional that will listen and can take action.

Cool. Thats exactly what I wanted to know. I wish this forum had a thank you button like some others do. 

The good thing about this forum is that it has given me a place to document everything I've been noticing and has functioned as some sort of a journal. I know exactly what I'm gonna say tomorrow.
Post Reply Post Reply






Donate to Apnea Board  
#65
RE: Just tried ASV and I hate it. Help?
Hope you get the action you seek to start in the right direction ASAP.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#66
RE: Just tried ASV and I hate it. Help?
Update:

So I found the right doctor. I found the best doctor and the best practice and got an appointment within 10 days. 

We had a long 45 minute conversation and he listened to everything I said and wanted to know everything. I mentioned the sleepyhead/oscar. I don't think he's heard of it, but he wanted to see it! He told me things that no other doctors have said. He mentioned that it could have been something called Ondine's curse. That word scared me but he said it wasn't a big deal. 

Later that day we had another 30+ minute long conversation over the phone and he looked at all my ASV data.

This guy is a DO and not an MD. From what I understand, DO's are WAY better than MD's because they try to understand the big picture. Its like they actually give a damn unlike medical doctors who just wanna shove pills down your throat and push you out the door. I think DO's are the way to go because they stand a higher chance of actually listening to you.

Exactly 2 weeks later I did another home sleep study (#7 for those of you counting). Back to the traditional belt and cannula device. I only got 2 hours of rest and didn't have any problems though.

When I returned the device, I was asked if I was willing to see the doctor that same day. You're damn right I was. I took a walk and came back 1.5 hours later. This practice is great. I could never get in with the other place.

I sat down in some computer lab and he showed me everything. This is the way things should be! We had another 45 minute discussion. Again, can't say enough good things about this practice. This is a gentleman who takes pride in his job and is very interested in viewing the data and showing it to people. I feel like I hit the jackpot by finding this practice.

Long story short, I didn't really have any problems within those 2 hours. AHI was 3. 

I'm still not convinced and think it should be done again. I mentioned how central apnea can be inconsistent, but he didn't seem to think anything of it.

I asked if the problem could be psychological and he said yes. A primary doctor prescribed a drug called Mirtazapine, and he said I should try that.

It looks like the problem is not sleep apnea and no machine will fix it.






What I think the problem might be:

I learned something new. When I wake up, my breathing is all screwed up and I feel what I imagine an asthma attack to feel like. I just can't get a satisfying amount of air in me and my lungs won't expand. I can remain like that indefinitely. But it I grab my phone and watch a quick video, or read something, within 2-3 minutes I start breathing right again. I can easily resort back to bad breathing again if I put down the phone AND start breathing different.

A mental distraction is the quickest and easiest way to fix my breathing. But if I'm just laying there idle, I have better success breathing when I start breathing slow and deliberate. Making sure to breathe all the way out before breathing in again and not breathing too fast. Deep breaths will then start to actually fill my lungs and it feels satisfying. But its like I can't "waste" my deep breaths. I have to breathe slow and shallow, and THEN a deep breath will eventually fill me up. Does my diaphram get tired after too many deep breaths and needs to rest up?

I wonder if I start chest breathing somehow instead of diaphram breathing. I am now able to (and learning to get better at) correct my breathing upon waking up and laying in bed. Still, this won't stop the bad breathing from happening in my sleep, and ASV seems to do NOTHING to correct it. Could the bad dreams be causing the breathing disruption instead of the other way around? Is it panicked breathing? Will Mirtazapine help? Will another drug help? Will one of those diaphragm pacing implants keep me regular?

This is truly a bizarre condition but I'm a lot further along in understanding what it actually happening, and hopefully solving the problem one day.


Edit: Oh, and why did that that previous WatchPAT sleep study show an AHI of 16 and a bit of cheyne stokes breathing? That was from my awkward awake breathing. The doctor probably just clicked print and didn't even look at it. I was able to tell this new doctor exactly when I was and wasn't sleeping when we went over the results together.
Post Reply Post Reply
#67
RE: Just tried ASV and I hate it. Help?
Nice to hear you have a more attentive and interested physician. I hope you find a solution to the chronic hypopnea and other events that have continued to fragment your sleep, even on ASV. The is one more level of positive pressure therapy that might be a consideration, but is usually reserved to people with chronic hypoventilation. iVAPS or AVAPS has a higher level of control than ASV, and can maintain a more reliable minute vent or tidal volume and respiration rate. I really don't know if it's a solution for you, but the ASV has let you down by slowly diminishing the minute vent target it is supposed to maintain, because it relies on your own 90 second rate as a baseline, rather than using a setting. There are a lot more things these machines do like holding longer IPAP and even working with higher pressures. Just a thought.
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.
Post Reply Post Reply






Donate to Apnea Board  
#68
RE: Just tried ASV and I hate it. Help?
(11-18-2019, 12:37 PM)Sleeprider Wrote: Nice to hear you have a more attentive and interested physician. I hope you find a solution to the chronic hypopnea and other events that have continued to fragment your sleep, even on ASV.  The is one more level of positive pressure therapy that might be a consideration, but is usually reserved to people with chronic hypoventilation. iVAPS or AVAPS has a higher level of control than ASV, and can maintain a more reliable minute vent or tidal volume and respiration rate.  I really don't know if it's a solution for you, but the ASV has let you down by slowly diminishing the minute vent target it is supposed to maintain, because it relies on your own 90 second rate as a baseline, rather than using a setting.  There are a lot more things these machines do like holding longer IPAP and even working with higher pressures.  Just a thought.

I'm definitely gonna bring that up to the doctor. Thank you.
Post Reply Post Reply
#69
RE: Just tried ASV and I hate it. Help?
Glad you found a doc that'll listen. Hope you find success soon.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  I hate my P10 so I'm switching back to the Wisp kdmorris410 21 4,715 01-31-2020, 08:47 PM
Last Post: old82
Surprised Night 8, it's already Love - Hate. So glad I found you guys! FE350 148 7,205 01-08-2020, 09:33 AM
Last Post: Sleeprider
Angry [CPAP] I hate my CPAP Machine. Sleep1ngb3auty16 7 1,490 11-02-2017, 07:27 PM
Last Post: Sleep2Snore
  Hate my CPAP! MrsBrando 35 4,090 02-14-2017, 01:38 PM
Last Post: Cranberry Ray
Ohmy I hate this. I'm worried I won't make compliance and will never learn to tolerate it allynpsych 23 4,003 04-13-2016, 02:53 PM
Last Post: palerider
  OMG!!! I hate 3:30 AM!!! Sleepyabby 10 2,042 02-26-2016, 12:55 PM
Last Post: DariaVader
Grin I HAVE A NEW MACHINE... and you're gonna hate me. snuffles 15 4,955 10-13-2015, 11:35 AM
Last Post: PaytonA


New Posts   Today's Posts






About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.