long talk with sleep doc today, questions about apap range?

[Junebug999]

saw sleep doc today and while i'm a little bit better....i'm still having issues with sleep hygiene. last night i had headache and took EXCEDRINS when they should have been ASPIRIN and i was awake until 5:30 a.m. this morning!!!!!

Ick....so doc is letting me go back to work, and he told me....he had told me before my AHI was 10.9. He said today on my back my events were 34.9 and only 5 on my side....so he said i really need to sleep on my side AND get off of pillow mountain. He wants to put me on a sleep/wake schedule so...up at 6, take nuvigil, go to gym, breakfast go to work, work all day, no naps, no exercising after work, no food 3 hours before bed, no liquid 2 hours before bed. Also he wants me to disassemble pillow mountain one pillow per night.

In previous appointment he had told me my ahi was 10.9. Today he said i had 34.9 events per hour on my back and 5 events per hour on my side, so I guess I need to sleep on my side more....so with 34.9 events on my back....is that mild apnea...?

I told him I wanted to try autopap instead of cpap, and he said to yes go ahead, and then he smiled rather....funny like and said, "and you know how to change that?" HAHAHA I had been trying to be cool about what i knew how to do with that little machine so I sort of hung my head and said, "yeah, I got the smartlink too." He said, that's fine, but I just don't want you to only look at the numbers, I want you to consider how you feel, how many hours of sleep you got, the quality of the sleep, are you refreshed, are you feeling like getting to the gym, etc....

When i asked about the nuvigil/provigil question, because I really do have to be more alert than I am now until this gets better to do my job, or there could be a very unfortunate thing happen....so, he said he would let my try nuvigil IF I promise to take it early and promise to get to bed and have 7-1/2 to 8 hours in bed....because I've been getting there at 2-3 in the morning because of the eating late at night thingee.....

So, he also talked to me quite a bit about motivation, and being healthy, we talked about some issues in my life, even marriage, family, etc. He seemed very caring and genuinely interested. He said while it would be best to keep a patient....that his sincere hope is for me to lose at least 25 pounds and maybe be able to get off the machine....he said he tells people all the time to just lost about 25-30 pounds and they will get better or have lower pressures and they don't do it.

And at the end we prayed together. He asked if we could....and I said of course.....

When I first started the cpap journey I was very harsh about him, I think I transferred a lot of my negative feelings about being exhausted, tired, dizzy, hopeless, frustrated, onto feeling very negative about him, when now that I think about it I think he has sincerely tried his best to help. In fact today we were just relaxed in his office talking about stuff, and it was stuff the average doctor I don't think would ever have taken the time to try to talk about. In fact, I had the text message thing happen twice (my mom was in a cardiac unit in another city so I had to have cell phone on). So.....maybe I gave this guy a hard time when he is sincere and really tries to do a very good job with his patients.

He suggested my using the autopap at 8-15 range. I've been using the cpap for 3 weeks at 8.

So, what do you think about the range....Now do I start this range overnight? Or start it slower ...or what do you think? I forgot to ask about that. I think from what he said he meant "go home and set it at apap at 8-15. Oh, I only use the flex during ramp. And my ramp at 5 with the cpap at 8 was just too low.....So I want to use ramp, but I only use it for about 20 minutes......

So, c-flex....with APAP at 8-15, what should my c-flex be at?

you know...there was something he said today.....that for a minute I considered he might be calist....yeah....but then again....i was tired and sleepy -- what do I know!

[ozij]

Sounds to me like a doctor who would earn my trust.
Therefore, if it were me, I would do exaclty what he suggested, and I would call him back if had questions about the results.

O.

[Breathe Jimbo]

Sounds like a keeper.

If he said 8-15, then make it so immediately.

[Duckie]

I agree he is a keeper. I have found sleep hygiene has helped. I hate 5 in the morning but I now am more mentally with it all day. I love sleep Dr. who look at the whole picture. I was surprised how a scheduled sleep increases energy and mental alertness

[torontoCPAPguy]

Man, if I don't get to sleep at 11 or so I am bagged the next morning and have to sleep in which is impossible.

[Beachmeezer]

When I first started, I kind of blew off the sleep hygiene aspect. Now I've learned it makes a huge difference. Going to bed about the same time each night, getting up about the same time each morning - really does make a difference. I'm ready for bed the same time each night now. I've given up 10 pm TV shows (but can watch favorites on demand so its a win win) - Kim

[Mary Z]

Sorry, I am not familiar with what C Flex is designed to do. I'd set that Auto at 15/8 just as he said. Sounds reasonable. That as well as the other interventions- losing weight, side sleeping, and losing the pillows sound like good advice.

[Mary Z]

Oh yeah, sleep hygiene is probably half the battle. It's so imortant.

[torontoCPAPguy]

Overall sleep hygiene has become CRITICAL to me as well. I don't eat or drink within at least a couple of hours of bedtime and if I do eat after dinner it is almost always what the rehab MD's recommened and that is (and I used to hate it) yogurt and berries in a cup. The tummy processes the whole shebang fast and it does not churn my intestines at night nor produce gas (any more than I normally produce - we change the window coverings every 6 months as they are torn to shreds in the wind). Wind down time is also absolutely essential to me and I get really ticked off when someone comes to me with an issue to be discussed at 11 pm. REALLY ticked off as of late as I have said I don't wish to discuss anything that needs deep thought within an hour or two of bedtime. The time for that is right after dinner... sometimes AT dinner. I don't want to be thinking about getting Winter tires for the new van at 11:30 at night, right? Room temperature makes a big difference for me. Even a difference of two or three degrees messes with my sleep. I sleep best at 69-70F and try to use the most economical means to get there. During the winter months we crank the heat down even further and use a comforter/duvet to snuggle under. Bought an automatic thermostat that will raise the heat to 71F around 6:45AM so that by 7AM the whole house is warmed up to get ready for the day; then back down to 69F or crack some windows open a bit. You get the picture I'm sure. I refrain from alcohol, caffeine, chocolate, etc., after dinner 100%. And we bought a new mattress with a memory foam (Tempurpedic?) pillow top. It was a big improvement but unfortunately is beginning to show signs of different compression across the surface... sorta like getting lumpy but different. It is going to go back under warranty as soon as we locate the bill (filed by year alphabetically in an accordian filebox). We got the non-prorated warranty option on the thing so if it's unsatisfactory... it gets replaced. No questions asked (we hope). And lastly, we have found our APAP range sweetspot a few months back as some of you know and are getting regular numbers that are <1 and often ZERO. But we still had SpO2 issues where it would drop during REM sleep due to the shallow breathing (but not shallow enough to trigger it as a hypopnea event). We have added 2-3L of O2 into the APAP airline and that has also improved things as we no longer get the deep desaturations, rising pulse and BP and arousals caused by them. Funny thing is that we have a friend who has exactly the same thing happening. AHI always under 1 with zero apnea events.... yet he has numerous arousals during the night according to the EEG. Has had two sleep studies and now returns to the pulmonologist for further evaluation. It's great when you find a sleep doc and pulmonologist, etc., that don't poo-poo your data and questions... I know it has made a huge difference in my treatment. And it has allowed me to find the 'sweet spot' in terms of APAP range although I wish the S9 would react faster to the few events that I do need it to react to... if I can get my SpO2 to straightline at around 95% I think my body will eventually find its rhythm again and I will sleep well. Find that APAP range that you need but don't expect your body to respond instantly to it. For most of us it will take weeks or months for the body's natural rhythm to be 'relearned'. And remember that as we get older we have many MANY other factors at play; drugs, drug interactions, disturbed sleep patterns due to any number of causes including the onset of arthritic pain at night (exacerbated when you start to sleep deeply as you tend not to roll about as much which relieves that discomfort to an extent). I would use narcotics, sedatives, sleeping meds, with a huge grain of salt and close attention to SpO2 as the meds will depress your breathing most certainly. And we all keep our fingers crossed!

[Hawthorne]

C-Flex is "exhalation relief". When it is set (and there are usually 3 different settings), the pressure is lowered while you exhale so that you are not exhaling against the set pressures but rather a lower pressure.

I don't know if it is on Bipap or not since you already have a lower exhalation pressure. Someone experienced with Bipaps can tell you that.

I had a machine without exhalation relief for 6 years and, now that I have it, I really get better therapy. Some people do not like it at all.

Most brands of mahines have this feature in some form. It is called something different for each brand of machine.

[cflame1]

If you've got a Respironics Bipap... then you have BiFlex.

Junebug... smartflex... which is what you've got instead of CFLEX... if you've been using your machine at CPAP 8... were you using your smartflex? If so why not just try it at the same level?


Editted: Sorry... wrong person, was meant for Junebug!

[JohnBFisher]

Sounds like a great doctor. He seems to want to work with you, willing to LISTEN, and tries to address all the issues. Definitely a keeper. Remember it took a long time to get to a very bad level of sleep. It will take a while for your problems with sleep to straighten out. I sure wish there was a magic wand we could wave, but in fact we all need to take it one day at a time.

Best wishes on your continued journey.

[Emilia]

Smartflex is DeVilbiss's version of c/a-Flex or EPR on the other two major machines. Smartflex can be set from 1-3 (I have mine at 2) and, in addition, DeVilbiss has a patented Rounding feature that can be set in clinician mode for IRounding (inhale) and ERounding (exhale) in a range of 1-5. The Rounding makes the transition from one pressure to another very smooth and makes it feel like a normal breath.

Junebug: I'd certainly follow the doctor's recommendation for the range of 8-15, but after a week of collecting and viewing your data, if you are having any issues, you can let him know, or perhaps tweak things a bit yourself. I started off with my doc's recommended range of 6-10, but I found I needed to increase the lower number up to 6.5 and then to 7.0 to achieve good results. I now keep my range at 7-10 and rarely need a pressure above 7.5 to achieve an AHI of 1.5 or less. Everyone's situation is different and you will need to see how you feel and what your data tells you. As for using the Delay (ramp), you need to figure out what is good for you. I tend to fall asleep very quickly and had mine set for only 10 mins starting at 5. I just decided to turn it off the other night as I was noticing a bit of intolerance for the lower pressure starting out. I now just jump right in at 7 and stay there. I like it better and fall asleep just as quickly. But you need to base your setting on how you deal with going to sleep, if you need to gradually get to 8, etc.

My sleep doc is also a keeper..... he loves that I am proactive and in control of my therapy. He encouraged me to get the software and monitor my results, and he has been 100% supportive of my choices in machine, mask, and that I participate on this forum. He wishes all his cpap patients would be so involved!

[Junebug999]

thank you for all of your responses and I can report the best night's sleep i've had in a long time...went to bed about 12....i know bad bad, but will be to bed earlier tonight and from now on. I set the apap range at 8-15, and noticed the highest pressure used last night was 8.5!!! which is good. I was using a comfort gel nasl mask and the big white thingee chin strap. I took one pillow away from the mountain, and took about 1/3 tab ambien to help me drift off. I stayed asleep until about 6:30 a.m. Whic is probably the longest sleep I've had without awakening in many many months. I set the humidifier at 3, because doc had asked if I use heated humidifier....BUT I think heated humidifier makes my nose stuffy, so I'm putting that back to passover mode.

I have used the Smartflex (thanks for helping me remember the right term ) and used it during ramping. I'm going to use it set at where Emilia sets it which is the main setting at 2. I'll set the inhale and exhale at the middle...or go read the manual. I think I need the most help at exhale.

So, now I just need some good sleep hygiene, and go with this for a week, then pull my daily reports next weekend and check the numbers and see how I did.

Question, on the Intellipap Auto, can I pull the daily reports all at once say on next Saturday morning? Or is that something I need to do each day?

Now, when I did my sleep study and titration study, they said I didn't have obstructive events, I had hyponea events....and the level was down to I think 92% at the lowest....so with my apap and good sleep hygiene, the hyponea should take care of itself? Or do I need oxygen? Which is interesting, because when I do get off my lard butt and get active, with the increased respiratory need, I feel BETTER, more clear headed, more energy etc.

Oh, and took the Nuvigil this morning...WOW, I like this !!!

[Muse-Inc]

JuneBug...with no naps, get up & bedtime same time every day, he's shooting for what they call sleep consolidation. The methodology helps to get you sleeping the entire night with reduced daytime sleepiness. The huge challenge with this is the change to your lifestyle. Good luck!

PS That doc sounds like a keeper to me!