New auto-SV user checking in

[CrazyCooter]

First post, however I have been reading here the past month due to the poor info supplied my doctor. I met with him one time and have pretty much been on my own ever since because the techs can't tell me anything and have had to practically demand copies of my studies......Obviously I don't know how to read most of the data since I'm an auto mechanic, not a sleep doc!

Background:I have never slept well and snored really bad! In my earlier years, I would sleep so soundly and long that I would wake up late for work/school after 11 hours of sleep to my alarm clock that has been sounding off for up to 2 1/2 hours! One time while camping, my buddies at the time shot a 12ga shotgun off within 10' of me sleeping on the ground on a tarp and they said I never stopped snoring! Over the years, say by age 22, I was able to wake on time most of the time, but was always groggy and tired where it took a while to actually really be aware of what was going on.......At this time I was still living at home under a less than ideal conditions. The home didn't have enough bedrooms for all of us, so I slept on the floor in the living room where my mother would get up much earlier than the rest of us that had normal 8-5 jobs....Mom told me stories where I would carry on full intelligent conversations with her while I seemed conscious, but I had no recollection after waking!

---Fast forward to moving away from home and starting my business, approx ages 24-44 where girlfriend and finally wife telling me I would stop breathing for a long time only to wake up gasping for air especially when sleeping on my back and much worse after drinking alcohol on those weekend occasions as many of us do when we're young. I blew it off as I was young/invincable and didn't have health insurance.....Wife started wearing earplugs, but had constant anxiety over my breathing at night. She would lose sleep trying to make sure that when I rolled over on my back that she would scratch my back to where I would roll over stomach to receive it......Like a dog with a back scratching fetish! Early on I worked long hard hours in the startup of my business as required and plenty of energy to do so, but over the years it has taken it's toll along with this condition that I would soon find out is a sleeping disorder! Welcome to the club huh?

More current: Ages 44-now almost 46 where I lack energy and seem to be waking up dumber every day. Friends, family, and clients tell me all the time that I'm brilliant as I seem to excel where others in my field are failing or just existing. What I created now is a business (monster) that requires more time and focus as I have been unable to find qualified help to assist in keepng the work flow smooth. With every day I fall behind and struggle with less brain function, energy, weight gain, sleep debt, etc....I fallen farther into depression as I can no longer mentally or physically keep up like I was once able to do. I have a lot of older friends and just chalked it up to older age and par for the course, but as we all here know.... there is much more to it than that!

Within the past year and a half: Wife started to press me for getting regular checkups since now we have great insurance and I wasn't taking advantage of it at all. Eye doctor caught the high blood pressure at my first eye exam and recommended that I see a doctor immediately.....Um, ya right...I feel fine. Put the numbers into google and it said go to emergency now! OK, maybe I better get this checked out...... Doc puts me on meds to lower BP, then doubles the dose a few months later, I fire a dipshit employee that was causing me stress, I locked the doors on my shop and go to appointment only.....all of which I can see on the calendar where each event lowered my BP. Pretty good except it's still on the high side especially in the morning, so the doc wants me in for a sleep study.....

The past 4 weeks: Did my first in office sleep study where with 2 hours of sleeping they put me on CPAP where it appears by the numbers it improved things, but the outcome says 1. Severe Complex Sleep Apnea 2. CPAP/BiPAP failure......Went home and drank the normal 2 cups coffee with breakfast an went to work a 12 hour shift.

Next week: They get me back in for test two and set me up on a BiPAP ST where the numbers look better yet, but the outcome says 1. Complex Sleep Apnea 2. Periodic Limb Movement Disorder 3. BiPAP-ST failure. Came home for coffee and breakfast and headed off to work for a few hours of catch up.

Two weeks later: I'm back in for a third round set up on a BiPAP autoSV where I had just 1 central apnea 0 obstructive, AHI 18 REM 13.1%. Diagnosis the same as test two....1. Complex Sleep Apnea 2. Periodic Limb Movement Disorder 3. BiPAP-ST failure. Went home and slept for almost 8 hours waking up felling horrible as I have for the past 2 weeks!

I know I'm leaving a lot of numbers out as I don't know what I should be including exactly.....If anyone wants more, ask! I have been borderline insane from the sleep debt I incurred over the three studies, my workload, and our dog who for some reason has be waking us up many times per night for seeming no good reason. The third study seemed to be the worst for me......Felt like the damn machine would wake me up almost every time I was dozing off by slamming me with a massive gulp of air that either inflated my face so I woke up, blew the mask up/blew air in my eyes from a leak, or made my ears pop......I was ready to tap out just 4 hours after checking in and looked at a clock every time I woke up for reference. By hour 8 I had had enough and they let me leave early as they had the data that was needed.

This weekend: I picked up the Dreamstation BiPAP autoSV with F&P Simplus mask on Friday. Left work Friday a bit early after an abnormally stressful day looking forward to trying out this life changing device and catching up on some much needed rest, but it wasn't that easy. I have the same problem with waking up just as I'm about to go out. Cheeks puff out or ears pop waking me up once again! After almost 2 hours of this BS, I shut down and decide to get some guaranteed sleep that I desperately need. Saturday went to work, but know I'm right at that threshold where I almost cant trust myself to not screw something up for much longer without sleep. Last thing I need is to leave someone's lug nuts loose....... Worked 4 hours and came home where I was falling asleep in my chair as soon as I quit moving or thinking directly about something around 6:30 PM. Figured this is the perfect time to head off to bed and try once again. Mind you I'm at a point where as soon as I stop moving and sit down I will go out for the count.... Lay down and as soon as my head hit the pillow, I'm starting to fall asleep....Better put the mask on before it happens! This time I press the ramp button thinking maybe that will help after reading it here pressures 4/9 instead of normal 5/10 to start and lay down. I doze off quite a few times only to be woken up every damn time!!!!! 40 mins I shut down and get some sleep, but now I'm so pissed and the anxiety building up of what if I CAN'T DO THIS! Again....insane from lack of rest......I want to smash the machine! I slept for probably about 10 hours and felt better this morning with a little more clarity in my mind, so I went to work for a couple of hours to catch up and lighten the load this coming week.

I'm reading my prescription and it says Max 20cm, EPAP15cm, EPAP 5cm, H2O max PS20, Min PS 7cm, Min breath rate Auto BPM

I'm at a total loss. Everything I have read is complaints about mask fit, hose tangling, noise, etc...... I don't see a solution yet to what I'm experiencing. I complained to the tech the last time about what was happening and I got a blank stare.

Looking to the wisdom of those here to help me through this tough time so I can get back on track. I seem to be waking up dumber every day.....simple things to me like math involving large numbers is impossible where it used to quick and easy to me. I'm losing the ability/patience to deal with arising situations and difficult clients at my work. Life is falling apart around me.....

Tony

[zonker]

welcome to the zoo. i'm NOT one of the experts you are looking for. i suspect one or more of them will be in within the next hour or so.

mainly just wanted to say howdy. thanks for supplying the forum with your machine type and settings. it will help tremendously.

may i ask, are you using software to track your sleep journey? either sleepyhead or the newer oscar? if so, you may want to prepare to add charts here for review. if not, you can get sleepyhead in my link below. i don't currently have the link for oscar.

i'll now step aside and let the more knowledgeable folk step in.

good luck!

[CrazyCooter]

Thank you very much for the welcome!

I read where people didn't supply enough or any info so I wanted to be as detailed as possible without overdoing it....... I did just notice that I had not checked text description for equipment after you pointed out that I had selected it, however not sure if the dropdown menu had my exact machine since is was labled slightly different.

I had seen reference to software on the forum, but have not looked into any of it yet. I really have my hands full just trying to swim/stay afloat right now......I used to be a pretty sharp techy kind of guy, but playing with computers/Android apps the past few years and learning anything new is just too much. Thought I was just not caring due to depression, but thinking it could be much more than that now.

[ajack]

ASV is a sharp learning curve. I think it's one of the hardest machines to get use to, because of the pressure shift. Give it a month. You really need to keep your mask on. You aren't getting decent sleep with it off. It will also take longer to get use to. Exhaustion, can help you sleep with it. I woke every hour and a half when I started. The last resort would be some medication short term.

I think mask fit and leaks are a high priority. There is a mask fit function on the machine that blows high pressure to help.

[CrazyCooter]

Downloaded/installed Oscar and uploaded my data although there isn't enough to do much with I don't think....... Pretty sure I never slept last night before quitting.

I have to be able to work this week, so if I don't sleep easy tonight I'm quitting till next weekend. I'm planning to wrap up the long term projects in the shop and have stopped taking in any more work as I have a week long desert camping vacation planned in 1.5 weeks and I'm considering extending it to up to a month so I can get used to this without having to deal with other obligations. I have a very robust solar/inverter system in the RV, so running the machine won't be a problem out there. If I sleep bad and feel useless, I can have a nap as needed without the fear of leaving lug nuts loose.......

Figure I need to make time for this or it will cost me big later.

[katestyles]

Figure I need to make time for this or it will cost me big later.

Ain't dat the truth!

You are lucky to have found the forum - we have people here who have made this journey ahead of you, and others who have walked alongside them. They are now here to help others, like you.

You understand how important this is to your health, but it isn't always easy to get over some of the big hurdles in the beginning.

Stick with it!

I think it is a smart plan to take a little extra time off work to get your head round this game.

[Pugsy]

Welcome to the forum.

I realize your machine isn't included in the drop down menu choice but it is more confusing to us to have the wrong machine chose so how about just no machine choice but instead add your exact model machine to the comments section.

Software choice...just ignore it. That was useful years ago when software was actually sold but the choices in their now are so old they are useless.

[CrazyCooter]

Thank you all for the kind words!

Looking over the data and I see Friday night's mask pressure spike in 4 breaths following a few timed breaths over about 40 secs time. Obviously it woke me up as the mask pressure shows 0 for a few mins cause I remember taking it off and used the bathroom. Then it happened an hour almost to the min later and I took the mask off!

Pressures hanging around low 4/ high 7.5 after getting into bed.
53:53 first ramp up to 9.3 following 4 timed breaths
54:16 snore, pressure spikes to 12.7....I wake up and take the mask off to use bathroom
55:45 I resume with pressures 4-7.5ish with some timed breaths and spikes up to 9.5-10 with a couple of 11's.\
1:54:57 spike of 12.7 again and I shut it down......

Did they program it to ramp up the pressure at the 1 hour mark? Did I have a central event and the machine was forcing me to breath causing the spike? I'm a numbers guy and this data fascinates me! Just what I needed to mellow some anxiety.

I have been burned out on the automotive industry, beat myself up pretty good and looking for something new/more challenging but less physically demanding......Along with that, something that really irritates me is a person who sells a product that they have never used or does a job that they really don't understand or have first hand experience with fixing. Have I possibly stumbled on to a new career path? The guy who delivered/set my machine up actually is a patient that retrained from his prior career as an equipment mechanic. He offered up some good info and I found that refreshing as none of the people in the industry I had been in contact with up to that point have our condition!

[CrazyCooter]

Good morning to all!

Made it through the entire night with the mask on!!!

One time about 4 hours in, the pressure woke me up where I could hear and feel a leak to the sides of my nose. I took the time to use the bathroom and snug the straps a bit. Now it felt a bit too snug, but wanted to try again.

Woke up many times throughout the night but mostly when I rolled onto my back and that's when I think the pressures ramped up and I noticed leaks yet again. Looked at the screen to see pressure over 15....I just rolled onto my side and went back to sleep.

Time on was almost 10 hours and AHI of 2.5. At least now I'm in compliance for the average........

Imported data, but not much time to look at it before work.

[CrazyCooter]

Hope this is what I needed to post up?

[ajack]

Were you lab titrated? It does take a lot to get use to ASV, It's a lot harder than cpap.
The min epap4 is default, as with the min PS4, the max PS has been reduced and I can't see the max epap on oscar.
This is the philips titration guide
https://www.sleepapnea.com/downloads/10 ... fGuide.pdf

This is a good slideshow on how ASV works
http://www.masm.wildapricot.org/resourc ... Morgan.pdf

It's really important to get the mask not leaking at all with an ASV, There is a mask fit function that blows high pressure to help you. The machine will mess up and get wrong feedback. Also clean shaven with a FFM or make sure no mouth leaks with a nasal. When setting up you may be better in a FFM, then swap to nasal if you prefer.


If you are setting it up yourself.
If it was my chart, I'd increase the min epap to 6 or 7, to clear a few OA, Then review.
max epap 15 default
min ps 4 default
max ps, keep the 16 or move to whatever the largest max available. To open up the range of the machine. The default on epap4 would be PS20

[CrazyCooter]

Thank you for the reply and your recommendations! RT set up the machine on Doc's prescription.

I don't know exactly what titrated is exactly? Is that where they play with the pressures throughout the night and get it all dialed in? If so, then yes I believe they did that.

I got two 10 hour nights on the hose along with just 4 hours last night due to mask leaks but I feel great overall when compared to this past month of testing. Comfort at home so far has far surpassed my experiences at the lab and I'm grateful for that. So many people struggle with just having a mask on their face .......I'm so lucky to be able to tolerate, just want a better fit.

I have been dealing with shortness of breath the past 3 days and trying to determine if its seasonal allergies or related to the new therapy. I don't notice roughness in my lungs like I would with a cold or allergies, just like someone is sitting on my chest and I can't catch my breath while just talking.

Meeting with a RT tomorrow to figure out the mask situation and question the breathing issue, because like you said....Even a small leak freaks the whole system out and then the higher pressures just makes the leak bigger. Can't risk having my eyes dried out and don't want my teeth to hurt when I wake up. I saw my Mom go through the dry eyes when she was new to it and she had to take a week off of work cause she couldn't see!

Having the craziest dreams after maybe years without, can't remember the last time. I'm excited because I know that is a good thing, but damn........They have been weird ones filled with situations of high anxiety!

Also training myself to nose breath which seems to be natural now that I'm aware of it. No dry mouth after the first 10 hour night and training. Even conscious of it when out riding my motorcycle!

Thanks for this links! Much of the seeming witchcraft is actually coming together for me.

[palerider]

I don't know exactly what titrated is exactly? Is that where they play with the pressures throughout the night and get it all dialed in? If so, then yes I believe they did that.

They play with the pressures to get it dialed in for that exact moment, in that situation... which very frequently isn't the right pressures for when you're back home, in your own bed, without a rats nest of wires and straps all over you.

lab results are very often wrong, because sleep varies from hour to hour and night to night.

[CrazyCooter]

I can totally see how the numbers could be different at home. After 3 night there over 4 weeks, I was beginning to feel at home!

Hell they had the temps all screwed up every time I was there! I woke up so damn hot and I knew it was going to be a problem when I walked into the door, felt the heat, and then saw they had Temperpedic mattresses. My wife freezes me out at home and we have a Sleep Number bed cause she sleeps so hot all the time.

[CrazyCooter]

Updating the thread with great news.......I'm responding to the ASV well!

I took the entire month of June off and spent it in the remote desert catching up on sleep and visiting with my retired friends. Brain power seems to be coming back, depression is almost non existent, and I equate my energy level to what it was 20 years ago.......Like I'm on crack!

I have not reviewed much of the data I have been pulling off the card in some time, but the DreamStation is scoring my AHI 30 day average at 2.6 and it's dropping daily as the doc is playing with my settings. Last night it was .6.

Next problem.......Traveling with this giant bag of shtuff. I'm a motorcycle junkie and I took my first overnighter trip this weekend. We stayed in a motel, so power wasn't an issue, but the darn bag of mask, hose, and ASV takes up al least 30% of my available lockable storage. Research has shown my there are no compact ASV machines available nor will there be ever or anytime soon? Have a visit to the doc and will be questioning him about the possibility of using a BiPAP for these travels......Anyone have any thoughts or opinion on that possibility?

If I can get on a nasal mask and a compact machine....That will make room for a Li-Po battery pack and I could also be able to tent camp. I usually do 2 week long trips with some weekend trips mixed in throughout the year and need a solution! I have read about just going without for a few days probably won't kill you, but I feel so good now that I'd like to keep the momentum going in a positive direction.