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Upcoming sleep PA appt question - SleepyTree - 10-13-2018

I am new to sleep apnea.  I asked for -- thanks to this great forum! -- a ResMed AirCurve Vauto 10, and received it because I had such a horrible problem with aerophagia on a loaner CPAP. 
    I have now been using it for exactly a month and I see my sleep PA next week.  I am NOT using the Rx that he asked the DME to set (which I think was 9 IPAP and 5 EPAP but I am using 7.8 IPAP, 3.8 EPAP).  I tape my mouth with paper tape and use a Dreamwear nasal cushion. 
    I am sleeping well without aerophagia, which was unbearable on a CPAP while I waited for this BiPap.  My AHI is usually around 0.2-0.7 (I have mild sleep apnea, but qualified for the BiPap because I had a seizure).  However, I have had three days of 1.2 - 1.7.  I realize I am lucky and this sounds great to many of you, but I only had and AHI of 5 to begin with (I only qualified for the BiPap due to a seizure caused by sleep deprivation, and good luck of having good insurance for now).
   I feel good about this, but I suspect I may get push-back because I was titrated higher in the sleep study and took things into my own hands without permission, and the DME sleep tech told me that 1.0 (on the CPAP) was not a good AHI for me because it was 1/5th of my original AHI "so you aren't well controlled". 
     I can't show any SleepyHead graphs to you because I have no idea how to use the program.  Will my PA be likely to use my SD card to look at my sleep?
     Does anyone have any advice for me on how to handle my upcoming PA appt?  It would be much appreciated.  But right now, I am waaaaaaaaaaaaaaay past bedtime, will check tomorrow to see if anyone answered.... sleep tight! 


SleepyTree

RE: Upcoming sleep PA appt question - FifthAvenue - 10-13-2018

You are fortunate that you have such excellent medical insurance.  The PA will review the SD data.  Approach the appointment with an open mind and discuss your issues and concerns.  It sounds like you are receiving excellent treatment.

RE: Upcoming sleep PA appt question - Mosquitobait - 10-13-2018

Just take along a copy of your Sleephead results.  include an Overall and a few days of example nights of data. Download the program and installing it is usually a first step. Do you have a computer with windows or something else? You need to be able to read an SD card as well - if you don't have a plug in for it on your computer, you need a card reader.

Most visits to the sleep doc involve bringing your SD card so that they can look at your AHI results. Most never bother to look at the graphs, which is damned annoying.

RE: Upcoming sleep PA appt question - Gideon - 10-13-2018

Use this as a guide to Sleepyhead
http://www.apneaboard.com/wiki/index.php?title=New_to_Apnea%3F_Helpful_tips_to_ensure_success#Using_SleepyHead
Data is the key to getting good feedback and the SleepyHead software is among the best PC applications to help examine the effectiveness of CPAP therapy.

RE: Upcoming sleep PA appt question - thibaulthib - 10-14-2018

Sorry to jump on this topic without helping but I am interested by the fact you have been having seizures because of sleep deprivation.

How did it manifest? Was it like panic attack/fits/convulsions/spasmophilia?

A similar thing happened to me 6 months ago and that is how we found out I was doing sleep apnea. They put me on CPAP.
3 weeks ago, I've got another "panic attack" episode, and they found out I needed to use BiPAP, which I do since then.

Do you think this is related?

Thibault

RE: Upcoming sleep PA appt question - SleepyTree - 10-14-2018

Hi Thiebalt
  Are you seeing a neurologist?  They would be able to answer your questions, sorry I can't.  I have never remembered a seizure and I have only had 3, but after I had the first one I was referred to a neurologist who said I should see a sleep doctor. Apparently many (maybe 40%) of people who have seizures also have sleep disorders or sleep apnea.  I was doing FINE on medication, no seizures since I started it, until the sleep study where there titration was set far too high and I could not breathe.  But I am thankful to have my BiPap.
SleepyTree
I know I am VERY lucky.  I may not have this insurance much longer, so I am grateful that I got my machine.
Smile 
SleepyTree
Yes, grateful.

RE: Upcoming sleep PA appt question - SleepyTree - 10-14-2018

Thank you for the answer, Mosquitohead.  I do not know how to get SleepyHead results on my computer (though I have downloaded it and I do have a card reader, I am not very techy at all!), so I guess I will just take in the SD card.
SleepyTree.

RE: Upcoming sleep PA appt question - SleepyTree - 10-14-2018

I will take my SD card, but they didn't even ask me to bring it in??  Or to bring the machine?  I wonder why not...

RE: Upcoming sleep PA appt question - thibaulthib - 10-14-2018

(10-14-2018, 07:58 PM)SleepyTree Wrote: Hi Thiebalt
  Are you seeing a neurologist?  They would be able to answer your questions, sorry I can't.  I have never remembered a seizure and I have only had 3, but after I had the first one I was referred to a neurologist who said I should see a sleep doctor. Apparently many (maybe 40%) of people who have seizures also have sleep disorders or sleep apnea.  I was doing FINE on medication, no seizures since I started it, until the sleep study where there titration was set far too high and I could not breathe.  But I am thankful to have my BiPap.
SleepyTree
I know I am VERY lucky.  I may not have this insurance much longer, so I am grateful that I got my machine.
Smile 
SleepyTree
Yes, grateful.

Yes I have seen a neurologist, did an EEG + Brain MRI with contrast 2 weeks ago. All came back normal.

My neurologist and pulmonologist told me it could come from the fact I was only on CPAP, and that my treatment was not adapted to my case (extremely low tidal volume of 250ml in average, instead of 400-420ml that I should be getting, therefore low minute vent, so probably not enough oxygenation).

But of course, it is only supposition as all the medical results came back ok...

Thibault

RE: Upcoming sleep PA appt question - SleepyTree - 10-14-2018

Hi Thibault
  Sorry I spelled your name incorrectly the first time.  My MRI with contrast and EEG were normal after my first seizure too, it was only the 24 hour EEG that revealed a seizure disorder, well-controlled by my medication. I am NOT trying to worry you, I am just cautioning you to not be totally surprised if you have another event.  But if your CPAP is correct now, you probably won't -- my ONLY event since starting medication was caused by the inaccurate BiPap setting and the resulting stress/sleep deprivation. So the take home message, per my neurologist, is to never-never-never be sleep deprived.  Thank goodness for correctly-adjusted machines!
Take care,
SleepyTree