Highly malignant apnea, would you help me please?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
williamco
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Highly malignant apnea, would you help me please?

Post by williamco » Wed Sep 09, 2009 10:20 pm

1- I was diagnosed with apnea last year -couldn't sleep really well in lab but they estimated required pressure of 10

2- I couldn't get used to CPAP so I used a ball in my back to sleep on my side- it cured me for 2 months then symptoms returned

3- after that I came across the didge idea, I blowed in didge - it cured me for another 2-3 months then symptoms returned

4- Finally in June 17-2009 I was able to use CPAP- left it on Auto 7-20 - the machine reached pressure 10 - AHI border line high 5-6 - but I was still tired

5- from June 17-September 9 , the machine moved up gradually on pressure from 10 till 18 and AHI still high, still tired
in matter of 2 months with the machine left on its own, it moved 8 points in pressure and still wants to go higher -
leak is under control - CPAP instead of Auto is used and didn't make any difference in numbers

6- when I asked for help, the great helpers on this forum asked me to post some samples of my report, so bare with me. here they are
please note these reports are only expamles for too many nights-each report represent several nights

6/30/2009 - machine reached 10 - AHI 5.1 - I am tired
Image




7/3/2009 - machine reaching 11 - AHI edging up 6.2 - I am still tired
Image




7/5/2009 - machine edging to 12 -AHI borderline high 4.5 - I am still tired
Image


7/10/2009 - machine reaching 14 - AHI up 8.5 - i am still tired
Image




7/24/2009 - machine reaching 15 -AHI 5.8 - I am still tired
Image



8/12/2009 - I started to do limit 13-15 Auto - AHI OK 3.5 - I felt slight improvement
Image



8/13/2009 : having felt little improvement I set pressure on 14-16 - AHI 4 - more improvement
Image



8/16/2009 ultimate relief happened on 15-17 - AHI 3.6 - notice machine didn't want to go to 17 at all
I realized this might be it
Image



9/9/2009 machine kept edging up on pressure and AHI during last 3 weeks hiting 17 for major part of the night and AHI went to 5.7 - Feeling extremly tired
Image


when I set the machine on 16-18, the machine jumped to 18 after less than hour

Now, from natural cure :sleeping on my side to blowing didge they all didn't last as apnea was getting worse by the month
on CPAP from 10 till 18 in just a matter of 2 months
where am I going? and where will I stop? I am already struggling with leak and tight straps and traumatized nose from this high pressure and still no end in sight.

I appreciate your input and sorry for too many pictures.

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BleepingBeauty
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Re: Highly malignant apnea, would you help me please?

Post by BleepingBeauty » Wed Sep 09, 2009 11:40 pm

williamco wrote:1- I was diagnosed with apnea last year -couldn't sleep really well in lab but they estimated required pressure of 10

2- I couldn't get used to CPAP so I used a ball in my back to sleep on my side- it cured me for 2 months then symptoms returned

3- after that I came across the didge idea, I blowed in didge - it cured me for another 2-3 months then symptoms returned

4- Finally in June 17-2009 I was able to use CPAP- left it on Auto 7-20 - the machine reached pressure 10 - AHI border line high 5-6 - but I was still tired

5- from June 17-September 9 , the machine moved up gradually on pressure from 10 till 18 and AHI still high, still tired
in matter of 2 months with the machine left on its own, it moved 8 points in pressure and still wants to go higher -
leak is under control - CPAP instead of Auto is used and didn't make any difference in numbers

6- when I asked for help, the great helpers on this forum asked me to post some samples of my report, so bare with me. here they are
please note these reports are only expamles for too many nights-each report represent several nights
No, it sure doesn't look like that's the case. I'm no expert, but more important than your leak rate (the number) is the leak line on the graph. Only two of the nights' data you posted (August 13 and 16) have decent leak lines. The others (where you see spikes and dips) are a problem. You want that line to be as flat as possible.

As I understand it, the Activa is a very popular mask because it "floats" on the face and moves with you, to minimize leaks. If you have it adjusted too tight, it's not able to work the way it was designed to.

You also appeared to be changing pressure ranges pretty rapidly (one range on August 12th, another on the 13th, and another on the 16th). The advice I always see posted here is to change one thing at a time, and give that change a week or so before you change anything else.

The other aspect of your data that jumped out at me is the time of night (or day, as the case may be) that you're sleeping. Your sleep schedule is nuts, and that's not helping you get any rest.

My advice: Readjust your mask so that it's able to float on your face and move with you as you sleep. And go to sleep at the same (earlier) time every night of the week. Adopt good sleep habits (search the forum for "sleep hygiene" and you'll find lots of information) and stick to them.

I'm sure others here who use the Activa can give you advice on adjusting it properly. And since I use my APAP in CPAP mode only, I'll leave your pressure-related questions to those who have far more experience with APAP than I do.

Best of luck getting your therapy on track.
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williamco
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Re: Highly malignant apnea, would you help me please?

Post by williamco » Thu Sep 10, 2009 1:01 am

BleepingBeauty : thanks for your observations. 2 valid points leak and sleep schedual.

while I am working on the leak, my leak is not from the mask activa, the mask is working great but it is in the mouth leak and I am working on that. however, whithin the same night that have parts of leak line pops and dips, the other parts of the same night where the line is straight, the apnea is still there and with high rate too

sleep schedual: absolutely I am working on it. but do you think the time of sleep has anything to do with the rate of the apnea or pressure required..

Thanks again

Eric_M
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Re: Highly malignant apnea, would you help me please?

Post by Eric_M » Thu Sep 10, 2009 3:49 am

no expert here by any means and I am not even going to pretend like I know what all of those numbers mean. However, as I was working my way down on your charts one by one, I was thinking 7-20 pressure range was a huge difference and it needed to be tightened up. As I got further, I noticed you did that and it worked for you. Leads me to a question though... were you prescribed the auto machine? Can you lock it down to just one setting? Might try it at just a pressure of 15... the chart seemed to react good there. If you are like me, you want instant gratification and it is hard to do like mentioned above... change one thing at a time, wait a few days to see if it helps...however, it is ultimately the best way to see results.

When I first got put on CPAP in June 2009, i was already in the mindset that I was going to have to wear a mask, so it made it easier to get used to. However, after weeding through the growing pains, I feel like a new man today. It wont happen over night, but after a week or two of great sleep...you will feel 18 again... atleast I did (39 now). Before, not that I was heavy, but for me I was (5'9", 187 lbs (195 at max)), I was always to petered out to exercise. Now I have started running and exercising and have worked my way up to a slow 2 mile run, watching what I am eating and down to 174 lbs with a goal of 168-170 lbs.

Good luck man... keep us in the loop... don't give up... your close, just a matter of consistency now.

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Julie
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Re: Highly malignant apnea, would you help me please?

Post by Julie » Thu Sep 10, 2009 4:19 am

I wonder if it isn't as simple as needing a good trial of tape, leading to a full face mask if the tape works. It would certainly explain the leak rates and the fruitless business of continuing to turn up the pressure, especially if most of the cpap air's going out your mouth when you sleep.

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bdp522
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Re: Highly malignant apnea, would you help me please?

Post by bdp522 » Thu Sep 10, 2009 6:12 am

If you pick one pressure and stay there for a week you may see things start to settle down a bit. Changing thins too quickly will just make things worse. I agree with the tape idea. Try it and see how you do. Try to just make 1 change at a time and give each change a few days to a week before changing something else. It's the only way to know what is and isn't working.

Brenda

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williamco
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Re: Highly malignant apnea, would you help me please?

Post by williamco » Thu Sep 10, 2009 9:20 am

Eric, Julie and Brenda:
thanks all for your observations.

1- the point of changing seting quickly, it didn't happen except in mid August when I reached pressure 13 and I noticed some improvement, so I thought I am very close from my sweet spot, so I changed it 2 times to 14 then 15 in matter of days. remember the entire move from 10-17 it took 2 lf months from mid June till mid August so with the exception of this mid term jump, the rest of the rythm was weeks for each change -

for instance right now the pressure of 15-17, it is there for 4 weeks now from 8/16 till today. I am at the same spot

2- the tape is a great idea, I actually tried it last night. it was great. the leak now is a striaght very smooth line and even the number is below the intentional leak of my mask for the pressure, it is 32 LPM. AHI with the tape is 4.1 (dropped from 5.5 to 4.1 but I also slept on my side for first time last night, so I don't know if the drop from the tape or sleeping on my side - talking about having 1 change at a time, I will separate the difference next few days)

but even though, 15-17 for a full month with tape and side sleeping with AHI at 4, it is ....??? but I will wait for a week on these changes and see

Thanks again
William

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BleepingBeauty
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Re: Highly malignant apnea, would you help me please?

Post by BleepingBeauty » Thu Sep 10, 2009 9:30 am

williamco wrote:BleepingBeauty : thanks for your observations. 2 valid points leak and sleep schedual.

while I am working on the leak, my leak is not from the mask activa, the mask is working great but it is in the mouth leak and I am working on that. however, whithin the same night that have parts of leak line pops and dips, the other parts of the same night where the line is straight, the apnea is still there and with high rate too
Everything I read here with regard to data says: Until the leak is under control, you can't trust the other data to be accurate. So first and foremost, priority-wise, is to get the leaking under control. If that means taping your mouth shut and/or wearing a chinstrap, or switching over to a full-face mask, you do what you have to do. (I was a confirmed nasal pillows user. I wore a chinstrap when it became apparent that I was mouth-breathing, but it didn't stop me from leaking air from my lips. So I taped for awhile, but I didn't like it much. A little over a month ago, I got the Respironics FullLife FFM, and my therapy numbers have never looked so good.)
sleep schedual: absolutely I am working on it. but do you think the time of sleep has anything to do with the rate of the apnea or pressure required..
I can't answer that question, as I don't have the background or experience for it. But one of the rules of good sleep hygiene is sleeping in the dark; if you're going to bed at 5:00 a.m. and your bedroom isn't completely "blacked out" from the outside light, you're not doing yourself any favors. Even with eyes closed, our bodies can sense light, and that can interfere with good sleep.

For your convenience, here's the list of good sleep hygiene tips (from Muffy) that I've been following:

Fixed bedtime and awakening time, 7 days a week.
No naps.
No alcohol, caffeine, chocolate, smoking.
Maybe a light snack before bed, no sugar. Stick to carbohydrates or dairy products.
Exercise program.
Cut BMI.
Comfortable bedding. Cool room temperature. No noise.
Relaxation techniques before bed. Yoga, deep breathing, Herb Benson.
No computer before bed (the screen eats up the melatonin). No bright lights during the sleeping period.
Establish pre-sleep ritual.
Bright light therapy. As soon as you get up in the morning, go outside and get 15-30 minutes of face-sun.
A lavender sachet (lavender helps sleep).
Address any pain issues.
Optimize medications.

And here is a similar list (with Do's and Don'ts) from http://www.uihealthcare.com/topics/medi ... index.html:

Paying attention to good sleep hygiene is the most important thing you can do to maintain good sleep.
Do:
1. Go to bed at the same time each day.
2. Get up from bed at the same time each day.
3. Get regular exercise each day, preferably in the morning. There is good evidence that regular exercise improves restful sleep. This includes stretching and aerobic exercise.
4. Get regular exposure to outdoor or bright lights, especially in the late afternoon.
5. Keep the temperature in your bedroom comfortable.
6. Keep the bedroom quiet when sleeping.
7. Keep the bedroom dark enough to facilitate sleep.
8. Use your bed only for sleep and sex.
9. Take medications as directed. It is often helpful to take prescribed sleeping pills one hour before bedtime, so they are causing drowsiness when you lie down, or 10 hours before getting up, to avoid daytime drowsiness.
10. Use a relaxation exercise just before going to sleep. Muscle relaxation, imagery, massage, warm bath, etc.
11. Keep your feet and hands warm. Wear warm socks and/or mittens or gloves to bed.
Don't:
1. Exercise just before going to bed.
2. Engage in stimulating activity just before bed, such as playing a competitive game, watching an exciting program or movie on television, or having an important discussion with a loved one.
3. Have caffeine in the evening (coffee, many teas, chocolate, sodas, etc.)
4. Read or watch television in bed.
5. Use alcohol to help you sleep.
6. Go to bed too hungry or too full.
7. Take another person's sleeping pills.
8. Take over-the-counter sleeping pills, without your doctor's knowledge. Tolerance can develop rapidly with these medications. Diphenhydramine (an ingredient commonly found in over-the-counter sleep medications) can have serious side effects for elderly patients.
9. Take daytime naps.
10. Command yourself to go to sleep. This only makes your mind and body more alert.
If you lie in bed awake for more than 20-30 minutes, get up, go to a different room (or different part of the bedroom), participate in a quiet activity (e.g. non-excitable reading or television), then return to bed when you feel sleepy. Do this as many times during the night as needed.

HTH
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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Pugsy
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Re: Highly malignant apnea, would you help me please?

Post by Pugsy » Thu Sep 10, 2009 9:36 am

William can you refresh my memory? Did you have a sleep study and not have good results then begin self treating? Not casting any stones but wondering if you had any history of centrals?? Do you know if REM stage sleep was worse for you? I tend to have many more events much later in my sleep time also. I know I am worse in REM and from what I have read we get more REM in the very later sleep time. So I typically will have a fairly nasty last 2 hours of sleep (regarding events) but not as nasty as you seem to have. Just a thought..

Do you use either the AFlex or CFlex feature on your machine? If so what setting?

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Re: Highly malignant apnea, would you help me please?

Post by DoriC » Thu Sep 10, 2009 1:29 pm

Hi Williamco, thanks for posting your reports, you're getting lots of good observations and advice here. I'm no expert but things don't look too terrible to me so hang in there. I'll just add a few of my own comments. I'll quote from one of the pros here, "one night does not a trend make", so you know about giving each change at least a week or more unless you're really miserable. From our own experience as newbies, it was harder for us to interpret reports and find that "sweet spot" on auto settings until we changed to cpap and made small changes in that mode. I wish you had posted some of those nights. Also,as I tell my grandchildren,(scold!) you've got to get to bed at a reasonable hour(say no later than 11PM?) and try for at least 7-8hrs sleep a night. Also, your mask may not be working for you,although hubby has some leaky nights too when he's restless, don't remember if you tried any others? Have you thought about a FF? Well, that's it for now. Dori

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Re: Highly malignant apnea, would you help me please?

Post by twokatmew » Thu Sep 10, 2009 1:53 pm

William, I understand the desire to feel better and get therapy optimized very quickly. I'm starting my fourth month, and I'm still struggling, though I'm starting to see trends and feel like I might be seeing the start of better therapy.

I've been reading your posts and see a lot of anxiety in not getting good results in one month of therapy. It's awfully soon to be expecting to feel like a new man. Further, although you readily admit leaks are an issue, you're still calling your condition "highly malignant apnea." Yes, you're struggling, but from your messages and charts, I see no reason to jump to the conclusion that your apnea is untreatable and out of control. In fact, many others have gone before you with the very issues you're calling "highly malignant apnea," and they're reaping the benefits of xPAP, even if their therapy is not as optimized as some members' here.

BB and others have given you good advice, but if you can at least *try* to relax more and look at this as a "data-gathering" period, you may begin to see trends which will help you optimize your treatment in the long run. Anxiety and good sleep are mutually exclusive, as are major leaks and good therapy!

Tape that mouth of yours and cool your jets. Or try a full face mask. It looks to me as if perhaps you're chasing leaks with pressure increases, which will only cause worse leaks.

You've also listed a few things that worked for a while. Perhaps you'll need to find a combination of things that work for you and help you on the road to feeling better.

Finally, is there one fixed pressure where you felt more comfortable? If so, set your machine to CPAP mode at that pressure and leave it there for a while. At the same time, work on leaks, relaxation and of course, sleep hygiene. You may find you start feeling better before you know it!

Hang in there, and good luck!

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Re: Highly malignant apnea, would you help me please?

Post by timbalionguy » Thu Sep 10, 2009 1:58 pm

The usual disclaimer of not being a health care professional....

Of course, fix the leaks and troublesome mouth breathing. I have used a FFM since day 1 by choice because I knew mouth breathing would be an issue for me. Masks like the hybrid or the FullLife are worth checking out.

I noticed that you have your auto range down to just 2 cm H2O. Although a narrower range is better than too wide a range, I wonder if 2 cm is too narrow. If I were in your shoes, I would try lowering your lower pressure by 1 cm for a week or two and see what happens on average during that time. If you see trending improvement after that time, try lowering it one more cm. If 1 cm reduction of the lower does not result in an improvement, or makes things worse, try raising the upper end by 1 cm. Raise it another cm if this helps. After that use the wisdom you have accumulated up to this point (plus suggestions from others on the list) to raise your pressure 'bracket' up or down as needed. If increasing your pressure, I would try raising the high end first, followed a few days later by the low end. If decreasing pressure, do just the opposite: lower the low end, then the high end a few days later. Keep your pressure 'bracket' to 3-4 cm between low and high, increasing it to 5 max only while titrating up or down as described. The key here, as has been suggested is 'gradual'.

Although not there yet, this is the technique I have settled down with. It is working abeit slowly. The sleep doctor is thrilled.
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bdp522
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Re: Highly malignant apnea, would you help me please?

Post by bdp522 » Thu Sep 10, 2009 7:33 pm

And just to really confuse you...some of us do much better on one straight pressure rather then the autos range of pressures. I get a much better AHI and feel better using one set pressure. So if you try a wider range and it doesn't help try setting the machine in cpap mode for one pressure.

Brenda

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Re: Highly malignant apnea, would you help me please?

Post by jules » Thu Sep 10, 2009 8:12 pm

if you feel your leaks are under control now, I would go back and start from scratch - i.e. - go back to your titrated pressure and redo this whole journey again much more slowly this time

also you need to get 8 hours or more each night to start paying back sleep debt ----

BB posted about sleep hygiene - read it and get some going for you

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Re: Highly malignant apnea, would you help me please?

Post by Wulfman » Thu Sep 10, 2009 8:23 pm

bdp522 wrote:And just to really confuse you...some of us do much better on one straight pressure rather then the autos range of pressures. I get a much better AHI and feel better using one set pressure. So if you try a wider range and it doesn't help try setting the machine in cpap mode for one pressure.

Brenda
williamco,

Just to re-emphasize what Brenda (and I) have tried to get across to you in the two threads you have going.......

You keep asking for input and suggestions and are apparently disregarding the ones given you.
You're trying all of these screwy pressure ranges and getting equally screwy results and you're getting frustrated.

What part of "Try single-pressure (CPAP mode)" do you not understand???


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