Wish me luck (Update3/23)

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
RestlessinWoolley
Posts: 158
Joined: Sat Feb 11, 2017 2:03 am
Location: Sedro Woolley, Washington USA

Wish me luck (Update3/23)

Post by RestlessinWoolley » Wed Mar 22, 2017 12:24 pm

Well the night is finally here, the big 3rd night. They are going to split the night between ASV and A Backup rate, for me. She uploaded my last week and saw me peak out at 7% Periodic Breathing the other night, as well as seeing my AHI swing from 3-15 as well in this last week. On the 15 night, I had to take a tranquilizer, to knock me out as my pain was up to a 10/10, but she was glad i did as it highlighted more of my Centrals to gie her a better attack plan. She said this may not be my last in clinic study as well. Said if they cannot figure it out this time, I may be placed in patient for a few days, so they can continually monitor my respiratory rate, and my SpO2 Levels, to make sure I don't have something else going on, even when i am awake. She said the rental I will come home with tomorrow and will send instructions later in the day to set it up. Sadi she wants me on it for a few weeks before she will send the script in to the new DME, to be sure we get the right machine this time. She is happy the CPAP has helped but she wants me below a 3 average for a month period. Said while my Apnea is the most complex she has seen in a very long time, I may never see a 0-1 AHI, just because of my compound health issues. I went to bed really late last night, and woke up at 6 this morning to be sure I will sleep all night tonight for them. At least I can bring my mask with me, so I don't have to wear a different one. Anyway Wish me Luck, I just want to be able to wake up refreshed again, tired of waking up already tired.. Big thanks to Pugsy for all the help and info, I would've never, had all the info I did when I had my followup if it wasn't for her and many of you, getting me info that something still wasn't right.

Ill let everyone know tomorrow how it went, and I should have my full results by weeks end.

_________________
MachineMask
Additional Comments: Resmed AirCurve 10 ASV
Last edited by RestlessinWoolley on Thu Mar 23, 2017 8:40 pm, edited 1 time in total.
EPAP Min 6, Max 15, PS Min 6, Max 21, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

User avatar
Stormynights
Posts: 2273
Joined: Wed Mar 10, 2010 7:01 pm
Location: Oklahoma

Re: Wish me luck

Post by Stormynights » Wed Mar 22, 2017 1:39 pm

I hope it all works out for you and you have sweet dreams.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Pressure EPAP 5.8 IPAP 9.4-21.8 PS 3.6/16 S9 Vpap Adapt ASV

User avatar
Pugsy
Posts: 63942
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Wish me luck

Post by Pugsy » Wed Mar 22, 2017 2:13 pm

Good luck. Will be keeping my fingers crossed that you get some good sleep so you can get good data.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

Soothest Sleep
Posts: 290
Joined: Mon Dec 12, 2016 11:35 pm

Re: Wish me luck

Post by Soothest Sleep » Wed Mar 22, 2017 6:01 pm

All the best for useful results!

Jean
O soft embalmer of the still midnight,
Shutting, with careful fingers and benign,
Our gloom-pleas'd eyes, embower'd from the light,
Enshaded in forgetfulness divine
-- John Keats

User avatar
zoocrewphoto
Posts: 3732
Joined: Mon Apr 30, 2012 10:34 pm
Location: Seatac, WA

Re: Wish me luck

Post by zoocrewphoto » Wed Mar 22, 2017 8:16 pm

Glad to hear that your doctor is really trying to find the best solution for you. Hoping you have a good night with lots of useful data.

_________________
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

User avatar
RestlessinWoolley
Posts: 158
Joined: Sat Feb 11, 2017 2:03 am
Location: Sedro Woolley, Washington USA

Re: Wish me luck

Post by RestlessinWoolley » Wed Mar 22, 2017 9:18 pm

They say the third time is a charm, and when I get here I am assigned room 7. And right now I can hardly keep my eyes open. They are going to let me sleep right up till the cutoff as need be as well. Should have a tech in here fairly soon to hook me up.

_________________
MachineMask
Additional Comments: Resmed AirCurve 10 ASV

User avatar
RestlessinWoolley
Posts: 158
Joined: Sat Feb 11, 2017 2:03 am
Location: Sedro Woolley, Washington USA

Re: Wish me luck (Update3/23)

Post by RestlessinWoolley » Thu Mar 23, 2017 9:01 pm

Well last night was interesting to say the least. I get there meet my technician for the night and we start chatting, and I get a massive dizzy spell. he gets my Vitals checked my BP was 110/45, figuring the machine was wrong, he manually checked it and got a similar result. Concerned he calls the clinic nurse, who comes in and checks my vitals and my SpO2 was 82%, and I had a raging headache coming on. SHe hooks up a cannula and gives me straight oxygen. within minutes my levels are looking better and my headache goes away almost instantly. SHe asked if this has happened before and I said yes, I have been getting these bad headaches, that are beyond migraines, they just wipe me out. I was given a better SpO2 finger monitor then my Wally World $20 special. One that I can track and store my levels with a date and time stamp, and has a micro SD card for the clinic. anyway after an hour I am doing well enough I get wired for sound, with some additional sensors, for respiratory, pulse, O2, a few extra wires on my arm, chest and oddly ones on my throat. About 10 I said I was ready to sleep. It took me a good 20-30 minutes to figure out the ASV machine, he said its hard to do an ASV test in one night as it usually takes the machine and the person a few nights to adjust and the machine to adjust to you. The slightest hint of an inhale and the machine would fill my lungs up. a minute leak in the mask did odd things. but once I got comfy, and my breathing regulated BOOM i was out like a light. I had some of the craziest dreams, many in fact, I cannot recall another time having so many dreams back to back. Then all went black as I woke up gasping for air, and all hell broke loose. I managed to get my breathing rate adjusted back down, and the ER Nurse from the Main hospital was on her way to check me out. Back on the oxygen again as apparently I had totally stopped breathing again, on the ASV machine and the only way to recover was a full blast blow to my face from the machine to rouse me. My tech is totally wide eyed at this point, he had never seen this before, as well as the other technicians, never seen a central that bad, to the point of a person totally stop breathing. I talked for a bit saying this is how all it started, I'd wake up in the middle of the night, totally soaked to the bone, usually voiding my bladder, as I did last night, gasping for air. AFter all the brewha, I tried sleeping again, I was back on oxygen with the ASV and I dozed in and out till about 6 am, when I had figured I had enough. They were going to let me sleep as late as I needed to, even if it was 9 am, but after an attack like that I usually cant go back to sleep as sheer panic has totally woken me up. They got some stellar data last night, but not really any closer to an answer, then we were to start. The tech has never seen anything like my graph, so mixed, so confusing. THe ASV did help though my AHI for the night was a 3.2. Doctor is pushing hard to have my test read by Tomorrow and to my new DME, another local one I was unaware had a local office, that will make Lincare Pound Sand. But here is the fun part, I have now been scheduled for a special Brain scan, one that supposedly shows oxygen levels in the brain, as well as a full PET/CT and possibly an MRI of the Brain. I have also been referred to a Respiratory Specialist to set up oxygen full time to help with headaches, and to look into maybe possible lung damage as well as brain damage. The ER Nurse said my lungs have a bit of fluid buildup, like you would see in Pneumonia but I havent had a hacking cough in years. Also said for some reason, my lungs are unable to scavenge enough oxygen for some reason. But it will sound like with the ASV machine, I will have oxygen set up, apparently i will have to wear a sensor, and if my oxygen drops the oxygen will meter in with my airflow to my mask.. SO basically back to square one. ANother sleep test tentatively scheduled for 3 weeks after i get the machine as it takes a bit more to dial in than a standard machine, and a full hopefully last followup with the sleep doctor in 6 months.. UGH!

_________________
MachineMask
Additional Comments: Resmed AirCurve 10 ASV
EPAP Min 6, Max 15, PS Min 6, Max 21, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

Soothest Sleep
Posts: 290
Joined: Mon Dec 12, 2016 11:35 pm

Re: Wish me luck (Update3/23)

Post by Soothest Sleep » Thu Mar 23, 2017 11:09 pm

That's quite the overnight adventure! Sounds like you're getting the support you need to make adjustments in your treatment plan. I'll bet you're wishing you could skip all the diagnostics and just get to a routine that works, already! Keep your chin up (figuratively); you are taking good care of yourself by seeing to all these things.

Keep on keeping on,
Jean
O soft embalmer of the still midnight,
Shutting, with careful fingers and benign,
Our gloom-pleas'd eyes, embower'd from the light,
Enshaded in forgetfulness divine
-- John Keats

User avatar
RestlessinWoolley
Posts: 158
Joined: Sat Feb 11, 2017 2:03 am
Location: Sedro Woolley, Washington USA

Re: Wish me luck (Update3/23)

Post by RestlessinWoolley » Thu Mar 23, 2017 11:37 pm

I just hopped into bed and hooked up to my machine with a flashing light, and some changes. I bet ill get a call tomorrow or a message thru myProviderLink why she made the changes. Machine is on Auto PCap for now, 6/8 Flex is set on A-flex.

Oh most definitely, I had planss later in April that got me the heck outta town for a few weeks to see the GF, but now my April is filling back up with tests and appts..UGH! LIke you said I just want it done and better sleep, the more they dig the more they find and it isn't simple.

Edit: I do have a message on the link, the changes made will hopefully help till my test results are finalized. Said not to mess with them too much as once again pressure exasperated my centrals, where the ASV Machine will sense that and throttle back where the DreamStation won't, unless event count drops..

Preliminary stats I slept 4.2 hours actually, again never reached Deep, I was in REM for 2.3 hours. and my even't count is horrid, leading up to the attack, my central events apparently peaked at 56.. in just that 4 hour period.

and an apology, saying bear with them, my situation is really complicated.

_________________
MachineMask
Additional Comments: Resmed AirCurve 10 ASV
EPAP Min 6, Max 15, PS Min 6, Max 21, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

User avatar
zoocrewphoto
Posts: 3732
Joined: Mon Apr 30, 2012 10:34 pm
Location: Seatac, WA

Re: Wish me luck (Update3/23)

Post by zoocrewphoto » Fri Mar 24, 2017 2:33 am

Sorry to hear that your situation is so complicated and no answers right away. But also glad that some of your problems presented themselves with educated witnesses and data on record. Hopefully, they will give the clues that the doctors need to figure this out.

_________________
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 autoset pressure range 11-17
Who would have thought it would be this challenging to sleep and breathe at the same time?

User avatar
RestlessinWoolley
Posts: 158
Joined: Sat Feb 11, 2017 2:03 am
Location: Sedro Woolley, Washington USA

Re: Wish me luck (Update3/23)

Post by RestlessinWoolley » Fri Mar 24, 2017 5:41 pm

Funny now my DreamStation is totally acting up totally. I have triple checked to be sure that auto off is off, yet last night it shut off at least 5 times, for up to 5 minutes a piece. No issues with power blips. I will be picking up a clinic rental machine, an old System One Bipap AutoSV unit to use till my tests are finalized.

_________________
MachineMask
Additional Comments: Resmed AirCurve 10 ASV
EPAP Min 6, Max 15, PS Min 6, Max 21, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins