First, Second and Third night results

JimmyKSenior · Post by **JimmyKSenior** » Mon Oct 24, 2005 8:39 am

Well it was more successful than not, but here's a clue - it's almost 10:00 AM, I'm at work, and I just had to take my first half Provigil and the 45 minute commute was difficult staying awake. Yes, dear diary the sleepiness remains. Overall, I'm doing fairly well and not too disappointed but will keep trying until it works. I have REMstar auto with cflex and Activa mask.

First night, last Friday - machine was there when I got home. Set everything up and played with it until it felt comfortable. Had set cflex on 1 and HH on 2 per starting recommendations. Auto is set on 5 - 15 cm, with recommended cpap at 10. Went to bed, put mask on and within minutes, felt like seconds, had to sit up and remove mask due to claustrophobic reaction. Wow! Set cflex to 2, and HH to 1, tried again. Felt OK but everytime I started to fall asleep felt like throat closed and I woke up. Went through this for a little while (minutes?) and fell asleep finally. Woke up a few times when moving, or rolling onto side but quickly back to sleep. Felt a little congestion in nose like not 100% open. Never saw anything except 5.0 cm on machine display so not sure if auto worked or what the pressure range was. Pressure seemed to be less than what I felt during titration study but this may be due to the cflex. I felt perhaps a little better on Saturday but not a whole lot. Slept > 8 hours.

Second night, Saturday - pretty similar, except fell asleep faster and woke less. Used a breathe right strip to see if I could breathe easier. Machine/mask seemed louder. Slept 8.5 hours. Thought I did really well. Had no energy and was sleepy all day Sunday, fell asleep on couch numerous times. Unable to accomplish much. Bummer!

Third night, Sunday, (off to work next day) - nothing felt right going to bed. Finally realized mask was leaking. Appears the day before when putting the cushion back on, I did not get it fastened tight on one side. I attached it correctly, noise reduced to basically nothing as noted by wife. Had trouble falling asleep though, nose seemed a little congested. Woke more than previous night but felt like not getting enough air. Woke at 4:30 unable to return to sleep, normally up at 6. Nose too congested, tried some saline spray, but had to remove mask and fell back asleep without it. Machine now has 24.4 hours logged on it for three nights.

Tonight I will try again, this time with the large cushion instead of standard. It felt like the mask was pinching the nasal passage on the sides. Might try a breathe right again. All 3 nights I found when I inhaled, I got more air if I flared my nostrils which doesn't seem normal. Not sure what I did when I was asleep. Another night or two with the Activa and I will try the Swift and see how that works. I am assuming I can't tell much about the pressures until I get the software and reader. I just don't feel like the pressure is high enough to keep the airways open and I don't like the difficulty breathing through nose. Another option is to change the range or to go off auto and just see how it is at a constant 10 cm. I'm not even close to giving up and only a little disappointed. Still lots to try and these seem to be small problems compared to what others have experienced.

Thanks again to all for support and knowledge sharing.

JimK

biggziff · Post by **biggziff** » Mon Oct 24, 2005 2:56 pm

You might find that somthing like a Swift might be the right mask for you. Not much chance of the "closed in" feeling and comfortable.

rested gal · Post by **rested gal** » Mon Oct 24, 2005 7:22 pm

Excellent description of your experiences so far, Jimmy!

Felt OK but everytime I started to fall asleep felt like throat closed and I woke up.

That exact same feeling of throat closing if I deliberately let it relax is why I moved the lower pressure of my autopap up to 8. I've been using 8 - 14 as my range for many months now. There's no feeling of throat closing as I drift off to sleep, if I start at 8 cm H2O pressure. Can get to sleep much more smoothly.

While testing various low pressures that way, I found that 7 cm H2O almost keeps my throat open when I'm relaxing to go to sleep. But it takes 8 to really keep it open for me. If you are able to lie down and consciously and deliberately relax your throat as much as possible while using the machine, you also may be able to determine what pressure is best to set for your low. Might be 6, or 7, or 8...whatever keeps your throat open when you deliberately relax it trying to simulate the relaxation of sleep and trying to take a breath in.

Of course we can't completely simulate the total relaxation of muscles during sleep, but if you're good at deliberate relaxation, you can get a pretty darn good idea of what pressure keeps your throat open for inhaling, and what pressure lets it slam shut. Use the number that keeps your relaxed throat open as your low pressure, if you can.

If that turns out to be a pressure that is difficult for you to exhale against while still awake, I'd set C-Flex for "3", to give you the most exhalation relief.

Had trouble falling asleep though, nose seemed a little congested. Woke more than previous night but felt like not getting enough air. Woke at 4:30 unable to return to sleep, normally up at 6. Nose too congested, tried some saline spray, but had to remove mask

Have you had a really good ENT scope you for nasal obstructions and examine you for sinus problems? snork1 was not able to get truly good cpap treatment for a year, until he had extensive nasal and sinus surgery. Made all the difference in the world as to how well cpap worked for him later after he got all those problems cleared up surgically.

You might want to check out the topics under "Turbinate and Sinus" about halfway down the page in this link, paying special attention to the posts by snork1:

LINKS to surgery, turbinates, Pillar, TAP experiences

JimmyKSenior · Post by **JimmyKSenior** » Tue Oct 25, 2005 7:18 am

biggziff and Rested Gal,

Very good feedback, both of you, thanks! In discussing the problem with Bonnie at BMI (my DME), we agreed to raise the minimum pressure to 8 so the range will be 8 to 15. My titration was at 10. I am also going to increase the humidifier to 2 and see if the extra moisture helps. I will be trying the Swift but need to see if I can finalize the Activa before introducing another variable. There are a lot of things that can be changed and I want to go slow so one change can't cancel out another. I willbe using the Swift eventually as I think alternating between two masks can solve some issues but each seems to have its own issues to work through. I will also be ordering the software and reader soon.

Of note - last night was the worst yet. Going from the Activa Standard mask cushion to the Large helped alleviate the pressure on the side of my nose but I had even worse congestion, and had to remove the mask at 2:30. One of my sons is being treated for sinusitis right now and I woke with a sore throat so it may be a couple days to sort out what is causing what. I'm kind of disappointed but not surprised actually. I always have been a pessimist and I just assumed it would go perfect. Silly me! My doctor is considering the ENT route but not until I've done 6 weeks on the therapy. I think I have some issues physicaly that are getting in the way but I don't play one on TV and I'm not married to one so I'll have to defer to the professional's opinion and wait the 6 weeks.

On the positive side, I think I am getting some benefit so all is not lost.

Thanks again!

JimK

WAFlowers · Post by **WAFlowers** » Fri Oct 28, 2005 8:13 am

JimmyKSenior wrote:... we agreed to raise the minimum pressure to 8 so the range will be 8 to 15. My titration was at 10. I am also going to increase the humidifier to 2 and see if the extra moisture helps. I will be trying the Swift but need to see if I can finalize the Activa before introducing another variable. There are a lot of things that can be changed and I want to go slow so one change can't cancel out another.

A great attitude and excellent plan (changing few variables at a time). So, did the changes you made help?

bspearsleep · Post by **bspearsleep** » Fri Oct 28, 2005 10:41 am

I have seen this many times when a person is drifting off to sleep...
causes:
1. mask is too small and resting against the otside of the lower bridge of the nose.
2. the humidity level(heated) is too great and secretions in your nares are swell ing form moisure obsorption.
3.As most people fall asleep they relax reducing muscle tension, if your jaw is droppng, your oral venting will make you feel like you can't get enough air( as most CPAP users know )when you 1st used your machine, and try to talk you get (that old sticking your head out the car window doing 55 feeling) which is the quickest way to feel claustraphobic.
Options
1. Oracle oral Cpap device made by Fisher Paykel
2. Full face mask so you can bypass the nasal interface entirely(best on the market is also fisher paykel)

I have put both of these on numurous patients and have seen very few problems with them.( the oracle does take a special type of person to wear it though) Bryan

bspear@tienahealth.com, bspear@sleephealers.net

JimmyKSenior · Post by **JimmyKSenior** » Fri Oct 28, 2005 11:18 am

The changes seemed to work pretty well. Upping the min pressure to 8 was the ticket I think. HH still@ 2. I don't know my numbers for the night yet but every time I look its at 9 or 10 so that's pretty close to the 10 they prescribed. My software and reader came yesterday and I didn't get time to install last night, maybe over the weekend. I have averaged 6 hours a night due mostly to World Series. Does anyone know, do I have to use the new card that came with the software or can I use the one that came with my REMstar Auto and has my numbers from the start?

I have had the same settings for 3 nights now and I felt better each day except today I almost fell asleep in a boring meeting on listening skills (wow), but I do feel pretty good. I woke a few times each night but not for long and not to get up. I think its just mask issues when I turn. I added a cover to my hose and the only other variables I still plan to try are HH from 2 to 3, c-flex from 2 to 3, and the Swift mask although having no problems yet with Activa except I seem to be in-between the two sizes. No irritation or red marks, the std seems to restrict my nose, the large leaks a little when I move. So, bottom line is after 7 nights I am just tweaking. I couldn't have done this without the help of everyone who contributes to these threads and puts their experience out there for all of us to share. THANK YOU!!!!!!!!!!

Unintended consequence: I think my wife is getting jealous of all my new toys and is hinting for some new bling.

Wulfman · Post by **Wulfman** » Fri Oct 28, 2005 11:48 am

Does anyone know, do I have to use the new card that came with the software or can I use the one that came with my REMstar Auto and has my numbers from the start?

My advice is to use the one that's been in your machine....it's got data on it.

Sounds like you're gettin' there.
Lots of "variables" to this therapy, aren't there?

Take care,

Den

Sleepless on LI · Post by **Sleepless on LI** » Fri Oct 28, 2005 12:27 pm

Jimmy,

Hi. Glad you had a better night last night. I am going to take a different road than everyone else did. Why are you starting on auto mode? I would have started on cpap at 10, what you were titrated at, and gave that the first shot. Yes, it's higher than what your auto might stay at, and it MIGHT be harder to get used to for a day or two, but that was your ideal pressure that the RT at your sleep study found to help you best, if it was done properly, and would be what I would think would help you the most, especially right at the beginning of your therapy. I am not suggesting you do anything I didn't do at the beginning. I mean, it's great you have the machine you do (I have it, too), but you don't have to start off with auto mode which I found can be a bit touch and go as far as helping me feel well at times. But cpap does it each night for me.

Also, I think your claustrophobia comes from the pressure being at 5 cms. That is a very low pressure for some people and when you're not used to being on the machine at all, it could feel like you're not getting air, that and together with warm, moist air from the hh, too. I can see how you could get that feeling very easily.

Third and last suggestion is, I would try the Swift. I think it's one of the most effective and easiest to get used to of all the interfaces out there. Yes, the pressure can feel a bit stronger on it, but like everything else, you get used to it.

Okay. Those were my suggestions. I am a HUGE fan of CPAP, rather than auto. Yes, auto alleviates some of the other side effects you can feel from straight cpap at a higher pressure constantly, but I think it provides the best treatment, at least for me. I'm sure a lot of other members of this forum are going to jump all over me for this one, but that is truly my opinion. I went back to straight cpap after fooling around on auto for too long and I'm glad I did.

ufo13 · Post by **ufo13** » Fri Oct 28, 2005 2:00 pm

Jimmy:

I would also agree with Lori's advice above. You may find a fixed cpap pressure is best for you. At a 10 cm h2o (fixed) with the ability to use c/flex for exhilation relief if you need it may be perfect for you! It is worth a try for a few days, and if that doesn't help you, i would also advise a tight pressure range around your titrated pressure of 10 ie: (8 to 12) etc. I use the remstar auto set at a range of 16 to 20, c/flex at 3 due to my high titrated pressure of 18 when i'm home, but when traveling i use my PB420 set at a fixed 18 (compact and easy to travel with) and it does a great job even though it has no c/flex etc, as that's what i was used to for 11 years before i got the auto.

Best to you,

steve,
ufo13

rested gal · Post by **rested gal** » Fri Oct 28, 2005 2:00 pm

, but that was your ideal pressure that the RT at your sleep study found to help you best, if it was done properly

No jumping on anybody by me! ... (POUNCE, POUNCE) ...

Straight cpap works fine for most everyone, if the pressure is not higher than they feel comfortable with.

"if it was done properly"

and I'd add this:

Even if it were done properly, it's still a one night snapshot of a person's sleep, in a very different environment than at home.

If done properly, scored properly, interpreted properly, prescribed properly, the formal PSG certainly can come up with the right single pressure to use, for most people.

All those "if's" don't always happen. Sometimes people are prescribed a pressure too high or too low, based on that one night.

I'm a rather big believer nowadays in keeping the low pressure up close to the prescribed pressure -- unless the prescribed pressure is too high for that person to get comfortable with it or "get used to it." However, to me that doesn't detract from the usefulness of having an autopap since the upper pressure can be set higher than the prescribed single pressure. Gives a person some room between their head and the ceiling, so to speak, to handle events if future pressure needs change, without having to go back for another sleep study just because symptoms are returning.

Might be just temporary "need a bit more pressure" for brief periods in a single night. After a party, after an unusually stressful, tiring day, etc.

Might be more permanent "need a bit more pressure" with weight gain, med changes, underlying health problems, etc.

I can get the same good treatment whether I'm using my autopap set for straight cpap mode at, say 9. Or as an autopap with the 8 - 14 range I normally run it at. If someone took my autopap away and gave me a straight cpap machine, I'd still do fine. But I wouldn't be happy about not having the upper range available, "if" and "when" needed.

As for which mode for a new user who happens to have an autopap to start out with, I'd still start in auto mode, but I'd have the low pressure set pretty close to the prescribed pressure as long as that was reasonably comfortable to breathe against. The software is a "must", imho, to get a really good look at what is happening when using an autopap.

Wulfman · Post by **Wulfman** » Fri Oct 28, 2005 2:19 pm

The software is a "must", imho, to get a really good look at what is happening when using an autopap.

DITTO!!! Whether it's in auto mode or CPAP mode.

(I won't get into the argument over which mode to use)

Best wishes,

Den

WAFlowers · Post by **WAFlowers** » Fri Oct 28, 2005 3:04 pm

JimmyKSenior wrote:except today I almost fell asleep in a boring meeting on listening skills (wow),

Sounds like they need to have an exciting meeting on speaking skills! (They're focusing on the wrong problem.)

It sure sounds like you are focusing on the right problems, and getting them solved! I found your other progress reports (after I posted to this thread) and am looking forward to more.

debidew22 · Post by **debidew22** » Sat Oct 29, 2005 8:49 pm

Hey I am new with the cpap-but not new to Provigil...you said you took 1/2 tab, I take 4 a day...tell me eventually I will be able to stop "popping pills" to get through the day! This "Darth Vadar" I am sleeping with has to be for something!!!

JimmyKSenior · Post by **JimmyKSenior** » Mon Oct 31, 2005 7:38 am

I guess everybody is different. I now try to go everyday as long as I can without taking any. Sometimes I still get sleepy but I try to push through it. I haven't had to use any Provigil since last Tuesday. I have felt better each day and right now now the only difficulty I seem to have is still mask fit but I am getting better sleep. This weekend was two of the most energetic days I have had in years. I am tired today but I think its because I stayed up to watch the Patriots. Also because I went virtually all day,working outside.

On Friday my PAPillow came and that night (my 8th) I struggled a little with the pillow but Sat and Sun each night got better. I can see where over time one adjusts and gets used to the feeling and the mask. I still have not installed the card reader or software, I intended to do it last night after it got dark but I found other things to do. Maybe tonight.

Hang in there, I'm finding it worthwhile hope you do too!

JimK

First, Second and Third night results

First, Second and Third night results

reduced flow during CPAP use