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[Pressure] Newbee - 1st Evening Failure
RE: Newbee - 1st Evening Failure
   
Hi Guys.

It has been a long time, almost 5 weeks since I have posted. Sad A case of my mentally struggling with what is happening and trying to get myself into a position where I can fight back and take control of my CPAP Treatment. I am sorry I haven't posted sooner or kept you updated as to why I haven't posted, I guess simply fear and hiding from the issue until i saw the Specialist and embarrassment of failing. I think I just had to hide....... though I have checked the board and been reading and learning as much as i can.

At the time of posting last, I was basically having CA's and could not fall asleep and as such i needed to discuss this and get it sorted out.

So I made an appointment at my Specialist Centre but stupid me made an appointment with the Cardiac Specialist not the Lung/ Respitory Specialist. Given that I was in there he did a full battery of tests and said that he can see significant improvement in all tests, EKG etc. He is delighted with how things are going.

It meant that it took another 3 weeks or so to get into the Respitory Specialist, which I did yesterday. I took him print outs of the Oscar Reports and also a Dongle so he could see them on his Computer.

Now a week ago, I go an "Update" Prescription stating that the final prescription differed from the initial prescription, rather than a pressure of 14, the max pressure should be 12.

During yesterdays appointment the RS stated or expressed the following:

a. That I should have purchased a FIXED machine because the pressure should be set at 12. I explained my reasons for buying an auto but he was not overly happy.

b. He wants me to start at 8 and make the machine "fixed" and use a 20 minute ramp from 8 to 12.

c. I explained my extreme concern about the CA and how I cannot fall asleep because just as i do, i go into an apnea and I wake up. It is hard to remember everything he said or even to repeat it accurately, but i will try. His points are:

i. He looked at the Hospital Titration Report and there was only a few CA's throughout the evening. He stated he was not worried in that regard at all.

ii. He had seen the Cardio Report which was sent to him (From the office next door)

iii. He looked at all my concerns and basically, I had very few OSA's on a pressure of 12, in fact, although my evenings and time on treatment were short and broken, there was only 2 or 3 OSA events in over 4 hours of sleep time. So he said that the pressure of 12 is working perfectly.

iv. The CA's. Now he agrees they are CA's and he did get a bit technical and I can't remember some stuff but basically, all the CA's are BEFORE i fall asleep and basically, when I am asleep, the CA's all added up to under 1.9 events per hour. (He said that some are also sleep junk and movement.)

So basically, he feels the problem is treatment induced and he believes that my issue is falling asleep and bad habits. I have spent the last 8 months on a mattress in the back room so I lack sleep hygiene, watching TV before bed and all the usual bad aspects including drinking coffee and stuff like that. When i wake up, instead of going back to sleep I go to the toilet and then watch a bit more TV, where I should be going straight back to sleep and being on the treatment.

So last night I just did what i could, it was a very hot evening, we had endured a day of 43C heat and I was a bit uptight but did ok for a while, Tonight I will get on it longer an I am determined to get to sleep. I have started addressing all aspects of Sleep Hygiene. (I can see that he is probably correct about the sleep hygiene issues)

I set the machine to fixed and made a ramp setting of 20 minutes for 8 -12. Damn.... i didn't like that at all.

I changed it back to auto and started at 8.6 and an upper level of 12. ( i did 8.6 for a while then put it back to 8)

I wonder if i could handle a starting pressure of 12? Thats pretty high for a newbee first up but what are your thoughts? He did say he wanted the constant pressure and something about washing the air or something but that part I cannot fully recall.

SO that's what is happening, I just wanted to fill you in and explain where I have been, both physically and mentally. I have to get this stuff sorted out and get sleeping and getting therapy so any advice or information would be greatly appreciated. I do understand what the Resp Specialist was saying to me, i just have concerns about the way he is going around things, although, he is the expert.

He said to do what I am doing, focus on sleep hygiene, he WILL NOT prescribe any sleep meds but will put me onto a Sleep phycologist if i request further assistance. Unless i have any concerns or need assistance, he stated he does not need to see me for 4 months.

So that is where I am. I still feel i am lacking a Leader that I feel comfy in following, b but my gut tells me that I am in relatively safe hands. Sad
I am now 59 and that means that I am old enough to forget, but i'm still young enough to learn. Your advice is gratefully accepted, your opinion is highly valued and your patience will probably be tested when assisting me.
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RE: Newbee - 1st Evening Failure
Well, your RS is full of it. Your results don't reflect any suggestion of obstructive apnea which might warrant a higher pressure. Your tidal volume is highly variable and minute vent is very high. The only events visible are CA and we can see the respiration is highly variable in volume and has a "central" anomaly. A sleep psychologist will not solve this problem. You NEED a ASV titration. No one you are dealing with has any expertise in these problems at all, and most people in your situation will just quit trying. You will either have to resolve to self-treat or find some way to get the help you need from competent individuals.
Sleeprider
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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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RE: Newbee - 1st Evening Failure
OK fine, the respiratory therapist, specialist, or whatever thinks this and that but ignores you. I thought it was your therapy. Tell the RS to stuff it. I see 7.69 AHI, not treated. Therapy is a fail. No it's not on you very much. Just do your part and stick to what we're suggesting. Get aggressive and assertive about your needs for your therapy. Dr. McQuack And Stu Pid the RS are wrong. I'm just saying if it were me, there's 3 words more to say to stu the RS and doc, you're fired, bye.

Ultimately, maybe RS the stupid professional goof would like to take a long walk of the short pier. One like this:

[Image: pjkayCV.png?1]
Dave

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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.
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RE: Newbee - 1st Evening Failure
Damn..... pretty much what is doing my mind in because what i am being told does not make sense to me Sad

I'm going to have to contact another lung /respiratory specialist and talk to him.

Thanks for the info and i will keep you advised what is happening.
I am now 59 and that means that I am old enough to forget, but i'm still young enough to learn. Your advice is gratefully accepted, your opinion is highly valued and your patience will probably be tested when assisting me.
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RE: Newbee - 1st Evening Failure
Hi Guys,

Well it has been a "different" sort of week, lots of stress, lots of learning and hours upon hours of reading hundreds of relevant forum posts. I figure if i make a mistake with a setting i wont kill myself, where as if I fail using CPAP, then that will be the result from the side effects. Sad

I am starting to make headway and at this stage, "going it alone" without communicating with the Specialist. A couple of rough evenings sleeping, but gradually getting it under control I believe. It is almost impossible to get in to see another Respiratory Specialist until March next year and that is too far away and also another $260 or thereabouts for the first visit.

So........I did what Dr Quack advised for one more day and then I did a few minor pressure changes here and there, tried a 20 minute ramp, even though I was against that from the start and with more tweaking we appear to heading in the right direction.

Original Directions From Specialist
Set FIXED pressure of 12, with a 20 minute ramp to allow you to get to sleep.

Current Treatment
  1. Ramp of 10 minutes so as to let me get comfy
  2. Ramp pressure 9.8
  3. Fixed Max Pressure reduced from 12 to 11.4
I have attached an Oscar Report and to me it indicates we are doing ok. I do note the following :
  • CA's reduced
  • No OA's apparent
  • Hyponeas have a small increase
  • Last night was by far the longest sleep I have had whilst under treatment and it would be much better if the stupid head gear was bigger and more comfy. Dam it hurts. The mask is fine, it is the headgear itself that hurts.
  • Minute Vent is high
  • Respiration is still Noctournal Hyperventilation and high, but improving as i learn to calm down. This is probably anxiety and obesity and I am addressing both issues, the obesity at "warp speed".
So that is where I am, it is based upon reading everyone's forum posts after post and advice after tip after idea and hopefully we can keep it working. This forum is proving such a huge help and instils confidence, so thank you to everyone that has made a most about CA's over the last 10 years because you can be sure that I have read it.

Any comments would be greatly appreciated.


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I am now 59 and that means that I am old enough to forget, but i'm still young enough to learn. Your advice is gratefully accepted, your opinion is highly valued and your patience will probably be tested when assisting me.
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RE: Newbee - 1st Evening Failure
Could you zoom in to the flow wave at 00:30 with a 2-3 minute zoom? I want to see what is causing a respiration rate near 50.
Sleeprider
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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RE: Newbee - 1st Evening Failure
(12-09-2020, 07:24 PM)Sleeprider Wrote: Could you zoom in to the flow wave at 00:30 with a 2-3 minute zoom?  I want to see what is causing a respiration rate near 50.

Hi Sleeprider, im hoping this is suitable for you.

Thanks Smile


Attached Files Thumbnail(s)
   
I am now 59 and that means that I am old enough to forget, but i'm still young enough to learn. Your advice is gratefully accepted, your opinion is highly valued and your patience will probably be tested when assisting me.
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RE: Newbee - 1st Evening Failure
That's just amazing! I have known another member that got relief from similar "panting" by moving to ASV, but that is a phenomenal respiratory pattern.
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: Newbee - 1st Evening Failure
(12-09-2020, 08:29 PM)Sleeprider Wrote: That's just amazing! I have known another member that got relief from similar "panting" by moving to ASV, but that is a phenomenal respiratory pattern.

Do you mean that's good or bad??? I don't fully understand.
I am now 59 and that means that I am old enough to forget, but i'm still young enough to learn. Your advice is gratefully accepted, your opinion is highly valued and your patience will probably be tested when assisting me.
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RE: Newbee - 1st Evening Failure
it's a longshot but I'd feel remiss if I didn't mention it: that panting pattern isn't quite like my plm flow rate but they're similarly uniform / repetitive enough to wonder if movement is triggering your unique respiratory pattern.
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