Pokey49 - Therapy Thread

[Pokey49]

OK I get what you are saying about the charts. I did seem to have more issues with leaks last night than I have been having for a while. Maybe the pillow cushion is coming to its useful life. For sure none of the masks Ive tried the cushions make it through a month of use as allowed by Medicare. I did not use somnoseal last night, wanted to see how just mouth tape works. May try that again with a chin strap tonight. Not a somoseal fan either. I dont know how non-mouth breathers get by with nothing added on. The pressures alone can blow your moth open while one is asleep.  I have no idea if I am chin tucking or not. I dont think I can stand another piece of paraphernalia on my head/body to accommodate cpap. I will see how it goes with tape and chin strap tonight and I will lower my max pressure to 13 to see if I can stop those "blow outs" causing the CAs since I dont need to worry about my sleep doc getting upset with me anymore changing my pressures :o/

[Jay51]

Hopefully things go better using your PCP as the person who writes the scripts for you.  

Here is a list of healthcare providers who can and can't write prescriptions for tests, xpap machines, and supplies, etc.  
Prescriptions from the following practitioners are accepted:

• Medical Doctor (MD)
  
  
• Doctor of Osteopathy (DO)
  
  
• Psychiatrist (MD Only)
  
  
• Physician Assistant (PA)
  
  
• Nurse Practitioner (NP)
  
  
• Dentist
  
  
• Naturopathic Physicians
  

Please note that prescriptions from the following practitioners are not accepted:

• Chiropractor
  
  
• Podiatrist
  
  
• Optometrist
  
  
• Psychologist
  
  
• Registered Nurse (RN)
  
  
• Respiratory Caregivers
  
  
• Medical Assistants
  

[jdougc]

Pokey, 
I will gladly trade a soft cervical collar for a chin strap. 
I had to get velcro extensions for my collar as I have a large neck. I loosen the collar and try to tuck and go from there.

I have sooo many night addons, including a night guard to protect my teeth as I grind them at night.
I wear a foot brace to keep my right leg at 90 degrees. I had plantar fasciitis and don't want that again.
Mouth tape and the SomnoSeal device and one 1 ear plug, as I sleep on my side.
My wife just shakes her head as I get ready for sleep. 

I usually forget one or two things when I turn my cpap machine on.

[Pokey49]

Jay51. I’m not so concerned about getting prescriptions written for me as I am finding punctual medical cpap expertise.  Seems like the pulmonology docs or in my case a sleep medicine/neurologist tell you do this, do that and either you never see them again or it’s so infrequently they are of little help when things aren’t going well. I for one, like I think many of us here,am not someone to keep doing something that’s not working and having to wait weeks/months to get a doctors blessing to make a pressure change or change a mask. 
I mean that’s about all they advise a person on. Try this or that pressure or mask and come back in: months. It’s a long 3 months if that pressure or mask ain’t working. Im gobsmacked as to how unhelpful the “experts” are!!!

[SarcasticDave94]

You made mention you're thinking the mask cushions wear out within a month. How tight are you wearing the straps? You could get several months out of those cushions typically, before they're worn out.

[jdougc]

Your response of not wanting to add "paraphernalia on my head/body to accommodate cpap" is missing a key point.
These are additional items that could be beneficial to you to get the restful sleep that is lacking.
I look at these as useful tools in my journey. Each one addressing an issue as I learn more about my sleep issues.
Hopefully you get some good rest.

[Pokey49]

I try to tighten them just enough to not cause leaks. The pillow cushions clearly work better if they are not overly tight and its easier on my nose to not have them to tight....I've just noticed that some seem to work better new and then get more leaky with time

[ejbpesca]

I too experience loss of seal as silicone of mask cushions ages.  I have only one day left before installing a new cushion.  The current one is in bad shape after a month's use.  I expect AHI and Leaks to go down with installation of a new cushion.

My Leak Rate at the beginning of the month is around 10/L then by the end of the month it is 28/L as per the extended sleep report on the ResMed machine's screen.

I guess there is no way to rejuvenate the silicone of a cushion.  Silicone is so durable I wonder why it only lasts about 10 days before I have troubles with mask cushions.  Some use them for month without issues.

[Pokey49]

I dont disagree with you JDoug  CPAP and all my other aches and pains at one time is wearing me out. Another straw on the proverbial camels back. Just trying to figure out what I absolutely must do/have and what I can live/succeed without.

[Pokey49]

No OSCAR report ftom me today. Last night was a bust for cpap. Woke up about 2am. Mask was leaking. I fussed with it for at least an hour. Repositioning it, tightening straps, loosening straps. Tried everything i could think of. Think I had it working ok but then it would start leaking  again blowing in my eyes. I finally gave up about 3. Took the mask off for the night. woke up at 6 feeling totally rotten. im going to use a new cushion tonight. 

 QUESTION. If a person has been doing cpap for almost 3 months or longer like all of you here, does  your body get to the point that it "needs it"? Almost like a drug??  That if you dont do the therapy for a night like i did for 1/2 of last night, it can cause negative symptoms. I felt horrible when I woke up at 6 is why I ask.