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[Treatment] New User
#1
Question 
New User
Hi,

I'm a new user to the board and a bi-pap user for the past month. During my sleep study I was diagnosed with an AHI of 96 and was put on a ResMed S9 Elite VPAP Auto - Mode: Bi-Level with H5i w/climate control and Nasal pillows. EPAP: 4.0, IPAP: 10.0 cmH2O and PS: 8.0 according to the SleepyHead software report. My RX reads 14/6cm H2O pressure. I've faithfully used the machine every night, even though we have had our share of disagreements.

My question(s)... I have made progress on getting my AHI down into the 20's which my RT says is great as it shows a steady decline. He also noted I'm maxing out the 14 pressure but the doc does not want to up the RX yet. When I look at the printouts it appears to bounce all over the place. Up until last night my best night was 5.96 AHI and I felt awesome the next day. Last night I had an AHI of 21.44 but yet today was the best I've felt in years. My hypopneia and obstructive run around 0.20, apnea's typically 0 and my clear airways 20 and above... they really jump around depending on the night.

I'm still trying to figure out how to read/interpret the SleepyHead reports and Huh don't understand how my AHI's can be relatively close one day to the next and yet I feel like crap one day and great the next. I guess I'm looking for feedback and thoughts from those of you who have been under treatment for some time. I won't be giving up the machine as I can now actually drive and not fall asleep PLUS I can watch a movie from start to finish! That in itself is great progress.

Thanks for any and all reply's.
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#2
RE: New User
Well, it's hard to get a correlation between how you feel and your AHI, especially for newbies. It's awesome that you're using your machine every night.

The best thing for you to do is to continue what you're doing. Monitoring your numbers and keeping in contact with your RT and doctor. Once you've been on the machine for a few more weeks you can see if pressure adjustments are needed.

Usually when your AHI is dominated by CA's as yours seems to be, the remedy is to lower the pressure. So it's good your doctor didn't raise it. It sounds like you're in good hands.

You've made some remarkable progress. Keep up the good work. You'd be surprised how many people have a hard time. Some worse than others. Some persevere and some don't. Peer support is crucial to success.
Sleepster

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: New User
Hi unrested,
WELCOME! to the forum.!
It sounds like you are making good progress. I encourage you to stick with it and keep doing what you are doing.
Best of luck to you.
trish6hundred
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#4
RE: New User
Thanks for the input Sleepster!

In regards to your below comment. I've had a hard time adjusting, terrible stomach pains (RT thinks it's Aerophagia) and backaches and headaches often, but those over falling asleep at the drop of a hat keep me using it, especially while driving... which got me to a sleep doctor.

I greatly appreciate your feedback!



(10-29-2012, 07:57 PM)Sleepster Wrote: You've made some remarkable progress. Keep up the good work. You'd be surprised how many people have a hard time. Some worse than others. Some persevere and some don't. Peer support is crucial to success.

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#5
RE: New User
(10-29-2012, 08:13 PM)unrested Wrote: I've had a hard time adjusting, terrible stomach pains (RT thinks it's Aerophagia) and backaches and headaches often, but those over falling asleep at the drop of a hat keep me using it, especially while driving... which got me to a sleep doctor.

If you've got aerophagia you should passing lots of gas ... out both ends!

I found exercise helpful, especially a bumpy bike ride. Jiggled out a lot of the gas.

Keep in mind that these side effects go away with time.
Sleepster

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: New User
(10-29-2012, 08:08 PM)trish6hundred Wrote: Hi unrested,
WELCOME! to the forum.!
It sounds like you are making good progress. I encourage you to stick with it and keep doing what you are doing.
Best of luck to you.

Thanks trish6hundred!

I've read many posts here and elsewhere and have been learning that good support is key. Being new I have so many questions and the doc and the RT's are not necessarily answering them, but on the boards I've found many users with questions I've had and answers that I can understand.

I'll stick with it and keep asking questions as I go.

Thanks again!

Larry



(10-29-2012, 09:16 PM)Sleepster Wrote:
(10-29-2012, 08:13 PM)unrested Wrote: I've had a hard time adjusting, terrible stomach pains (RT thinks it's Aerophagia) and backaches and headaches often, but those over falling asleep at the drop of a hat keep me using it, especially while driving... which got me to a sleep doctor.

If you've got aerophagia you should passing lots of gas ... out both ends!

I found exercise helpful, especially a bumpy bike ride. Jiggled out a lot of the gas.

Keep in mind that these side effects go away with time.

Hmm, perhaps a bike ride is in order!
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#7
RE: New User
Don't be discouraged! It really sounds like you are doing great for one month in.

Keep in mind that while you will have good days and bad days, xPAP treatment is long term. If you're feeling better, even on the bad days, it's working. People respond differently, but some have taken up to six months to really feel the full benefit. Patience and discipline (use your xPAP every night) are the keys. Look at "Sleep Debt" on the Wiki, it discusses it further. Also, xPAP is not a cure all. If you have other issues, make sure the core cause is not something else

Aerophagia usually gets better over time. Discomfort and plain weirdness will get better. I don't want to discourage you from looking at your numbers agressively, I'd just recommend that you don't take one or two nights too seriously. You're looking for trends over a one week to two week period. You say you've talked with a RT, so you're already doing better than most of us. THe typical story goes something like, sleep study, prescription, get machine, never hear from doctor again.

Keep with it and let us know how you're doing. Sorry, I don't use Sleepyhead, but if you post some screen shots many people here do and can give you some advise.
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#8
RE: New User
I'm three days away from my one-year anniversary and I'm still noticing improvements.

I'm recovering from years of abuse to my body and my psyche.

I echo what jdtireton said about good days and bad, and not focusing on one day's, one week's, or even one month's data. As long as your AHI is below 5 respond only to long-term trends.
Sleepster

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: New User
(10-30-2012, 11:21 AM)jdireton Wrote: Don't be discouraged! It really sounds like you are doing great for one month in.

Keep in mind that while you will have good days and bad days, xPAP treatment is long term. If you're feeling better, even on the bad days, it's working. People respond differently, but some have taken up to six months to really feel the full benefit. Patience and discipline (use your xPAP every night) are the keys. Look at "Sleep Debt" on the Wiki, it discusses it further. Also, xPAP is not a cure all. If you have other issues, make sure the core cause is not something else

Aerophagia usually gets better over time. Discomfort and plain weirdness will get better. I don't want to discourage you from looking at your numbers agressively, I'd just recommend that you don't take one or two nights too seriously. You're looking for trends over a one week to two week period. You say you've talked with a RT, so you're already doing better than most of us. THe typical story goes something like, sleep study, prescription, get machine, never hear from doctor again.

Keep with it and let us know how you're doing. Sorry, I don't use Sleepyhead, but if you post some screen shots many people here do and can give you some advise.

Thanks for the feedback, I do appreciate it. I've been on for 32 days today and my overall AHI is now 30.80 as opposed to 96 during the sleep study. AHI for last 30 days is 27.32, the last 7 days is 20.50 so it is going down.

I've decided to be very proactive in my treatment and have talked to the RT (actually 3 of them) in the past month. Today I also talked with the sleep doc's nurse and had the RT fax over my 30 day report. The nurse said they would get back to my on Thursday with an update on where the doc felt I was at. The past two days have been the best I have felt in years so I do know it is working. The side effects have not been so pleasant, but feeling energy for the first time in forever makes the side effects more tolerable. I no longer need 3 pots of coffee a day either... that could not have been good in the first place.

Yes, I am in this for the long haul. My episodes with driving and falling asleep have me committed as I wish to be around a lot longer and I would find it hard to keep going if I hurt someone else because of my sleep issues. I've read and understand the frustrations many write about; the headaches, bloating, stomach pain, backaches, sore nose, air leaks, hose tethering you to one side of the bed, etc... but not dealing with this could be so much worse. There have been days where I feel like taking the machine out to the driveway and running it over, but that would only relieve the frustration for a few seconds and lead to more stress. Big Grin

I'll work at looking at the trends more over time. All of this is so new and in many ways I feel like I'm learning a foreign language. With the help of all the good people here I hope to make even better progress!

Thanks again and Sleep-well
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#10
RE: New User
(10-30-2012, 07:06 PM)Sleepster Wrote: I'm three days away from my one-year anniversary and I'm still noticing improvements.

I'm recovering from years of abuse to my body and my psyche.

I echo what jdtireton said about good days and bad, and not focusing on one day's, one week's, or even one month's data. As long as your AHI is below 5 respond only to long-term trends.

Sleepster,

Thanks and congrats on your approaching 1-year anniversary! I will write a celebration report the first night I have an AHI below 5. To date the lowest I've had was a 5.96 but bounce around from 11 to the upper 20's 99% of the time yet.

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