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15 Months into the Therapy but symptoms are worse then before.
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Realtor 1 Offline

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Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed F10
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CPAP Pressure: 8-14
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Ontario, Canada

Post: #1
15 Months into the Therapy but symptoms are worse then before.
It's been over 15 months and I have been using my CPAP machine for at least 7 to 8 hr everynight regardless of how I sleep. AHI is less then 1 . I do wake up many many times per night but mostly do fall asleep. Have been using sleep medicines off & on but not on nightly basis but the fatigue I get during the day is debilitating and do feel sleepy al the times with Headaches and loss of focus.
Provigil was prescribed a few months ago, did not help me much ( To be fair it did take away the sleepiness to a certain extent but the side effects were very harsh) Used an Adptogen called Rhodiola and did feel good for about 8 weeks but then it stops working. Sleep doctor is useless as he does see me every 60 days but really does not want to listen or do much a part from giving everything more time.

My question is why do I still feel this bad even after that many months ? I did not even feel this bad even before tarting CPAP. Seriously contemplating about trying to go without CPAP for few days to see if the machine is causing it. Do I need a Bipap (Although I do tolerate the CPap reasonably well at least Consciously) Advice from the veterans would be greatly appreciated.
11-23-2014 11:22 PM
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trish6hundred Offline

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Posts: 6,452
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #2
RE: 15 Months into the Therapy but symptoms are worse then before.
Hi Realtor 1,
I'm sorry that you aren't feeling any better.
You might post some of your graphs from Sleepyhead or ResScan so that others could help you interpret them.
Hang in there for more suggestions.
I hope things get better for you with your CPAP therapy.

trish6hundred
11-23-2014 11:43 PM
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Ghost1958 Offline

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Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #3
RE: 15 Months into the Therapy but symptoms are worse then before.
Wouldnt call myself a veteran compared to alot here but. You say you wake up many times a night. Ive went thru a period like that and I felt wore out for a few days when it was happening. The machine wont make you "feel" better as in not sleepy in the daytime if your not getting good sleep at night.

Broken sleep aint good sleep. Those are great numbers better than I have most of the time unless I go nasal but cant really do that consistently right now. But numbers arent everything. 4 hrs with low AHI isnt going to make you ready for a full day the next day.

However I wouldnt stop therapy. Even if you dont feel all up and rarin to go, your sleep apnea is being prevented from doing physical damage to you that it otherwise would. Which is worth wearing the mask IMO.

Docs tend to toss pills at everything. They dont always help. Actually alot of the time ive found they cause more problems than they solve.
11-23-2014 11:49 PM
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Realtor 1 Offline

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Posts: 48
Joined: Oct 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed F10
Humidifier: Built in
CPAP Pressure: 8-14
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Ontario, Canada

Post: #4
RE: 15 Months into the Therapy but symptoms are worse then before.
Attached is my data from last night.
The data is fairly decent like this on most of the nights.
11-23-2014 11:52 PM
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rjberube Offline

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Posts: 17
Joined: Jun 2014

Machine: ResMed AirSense 10 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: AM Airway Management - Tap PAP with headgear
Humidifier: Integrated, + ClimateLine Hose
CPAP Pressure: 5-11 with AHI: 0.5 to 1.9
CPAP Software: ResScan

Other Comments: Oh, to sleep like my cats....

Sex: Male
Location: South Florida

Post: #5
RE: 15 Months into the Therapy but symptoms are worse then before.
Hi Realtor... some questions:

Are you using a ClimateLine heated hose? And if yes, what temperature and humidity settings are you set up at?

If you don't have the heated hose, I might recommend it as a way to deliver more humidity without condensation issues happening inside your hose and mask, especially during colder weather.

Other point is that you might want to try dropping your minimum pressure by 2, to allow machine to ramp down. You might have retrained your breathing patterns to require less of an assist.

You might be uncomfortable without consciously realizing it, hence sleep disruptions...
11-25-2014 02:15 PM
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Sleepster Offline
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Machine: ResMed AirCurve10 VAuto
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Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #6
RE: 15 Months into the Therapy but symptoms are worse then before.
(11-23-2014 11:22 PM)Realtor 1 Wrote:  It's been over 15 months and I have been using my CPAP machine for at least 7 to 8 hr everynight regardless of how I sleep.

Does that mean that you are spending some time sleeping without the CPAP machine? If so, that's the first variable to eliminate if you're trying to figure out what's wrong. You have to commit to using the machine every time you sleep, all the time you are sleeping.

Until you do that, nothing else that you try will work.

When you sleep without the machine your brain has to keep waking up your body so it can breathe. For many of us, when we're hooked up to the machine it takes a long time for the brain to begin to trust that the body will keep breathing when it's asleep. Every time you sleep without the machine you are violating that trust. In other words, you are interfering with the adaptation process and resetting it. You'll not get anywhere unless and until you make a total commitment to complete compliance.

Until you do that, nothing else that you try will work.

Sleepster
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11-27-2014 12:40 AM
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Realtor 1 Offline

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Posts: 48
Joined: Oct 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed F10
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CPAP Pressure: 8-14
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Ontario, Canada

Post: #7
RE: 15 Months into the Therapy but symptoms are worse then before.
(11-25-2014 02:15 PM)rjberube Wrote:  Hi Realtor... some questions:

Are you using a ClimateLine heated hose? And if yes, what temperature and humidity settings are you set up at?

If you don't have the heated hose, I might recommend it as a way to deliver more humidity without condensation issues happening inside your hose and mask, especially during colder weather.

Other point is that you might want to try dropping your minimum pressure by 2, to allow machine to ramp down. You might have retrained your breathing patterns to require less of an assist.

You might be uncomfortable without consciously realizing it, hence sleep disruptions...

I do use the climateline
Humidity is set at 5 and the temp @ 29. (I had the FP Icon machine before and really enjoyed the warm air with the resmed even at the highest heat setting it never get warm).
11-27-2014 06:23 PM
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Realtor 1 Offline

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Posts: 48
Joined: Oct 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed F10
Humidifier: Built in
CPAP Pressure: 8-14
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Ontario, Canada

Post: #8
RE: 15 Months into the Therapy but symptoms are worse then before.
(11-27-2014 12:40 AM)Sleepster Wrote:  
(11-23-2014 11:22 PM)Realtor 1 Wrote:  It's been over 15 months and I have been using my CPAP machine for at least 7 to 8 hr everynight regardless of how I sleep.

Does that mean that you are spending some time sleeping without the CPAP machine? If so, that's the first variable to eliminate if you're trying to figure out what's wrong. You have to commit to using the machine every time you sleep, all the time you are sleeping.

Until you do that, nothing else that you try will work.

When you sleep without the machine your brain has to keep waking up your body so it can breathe. For many of us, when we're hooked up to the machine it takes a long time for the brain to begin to trust that the body will keep breathing when it's asleep. Every time you sleep without the machine you are violating that trust. In other words, you are interfering with the adaptation process and resetting it. You'll not get anywhere unless and until you make a total commitment to complete compliance.

Until you do that, nothing else that you try will work.
Sleepster,

I do keep the mask on for the whole time regardless, if I am sleeping or not.
11-27-2014 08:55 PM
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herbm Offline

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Machine: ResMed AutoSet S9
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Mask Make & Model: ResMed Airfit P10 Nasal Pillow
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CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #9
RE: 15 Months into the Therapy but symptoms are worse then before.
Ok, so you are 100% compliant (GOOD, Keep that up)

I looked for leek problems, to see it that might be waking you up. If the example you posted is representative of your sleep most nights, you don't seem to be having leaks that would be causing you to be awakened.

Based on this it seems that the therapy is probably effective as far as it goes.

Therefore it is probably most useful to look for something else that is awakening you and/or causing your symptoms. Either something in the environment (e.g., living next to a train track with frequent trains, your sleeping partner is snoring loudly) or something else about your body and health is awakening you.

Do what ever you can to find a new sleep doc.

We all have generally agreed that many of the docs are not that useful. Even the really good ones see us so seldom that they really don't know much about what is happening with our sleep on my client bases.

But there are some good ones out there, and they are MOST useful when someone has a problem like your, i.e., 100% compliant, good numbers, frequent awakening, continued symptoms.

Good luck -- keep up the therapy but do seek out the cause and insist on getting the help that you need to do that.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
11-28-2014 04:20 AM
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rjberube Offline

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Posts: 17
Joined: Jun 2014

Machine: ResMed AirSense 10 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: AM Airway Management - Tap PAP with headgear
Humidifier: Integrated, + ClimateLine Hose
CPAP Pressure: 5-11 with AHI: 0.5 to 1.9
CPAP Software: ResScan

Other Comments: Oh, to sleep like my cats....

Sex: Male
Location: South Florida

Post: #10
RE: 15 Months into the Therapy but symptoms are worse then before.
Hi Realtor... I can sympathize with your desire for warmer humid temp... Especially with the Uber-dry northern home humidity levels that come with heating season (I know all about those 5% humidity levels...).

Finally took a close look at your report... I notice that your pressures (page 2) are actually in the lower part of your range. Looks like you rarely get close to 11, let alone 14.

Having had an S9 and similar experience with a plateau (and eerily enough, almost identical settings), I found that dropping the min and max by 2 (making pressures 6-12) worked wonders - AHI figures didn't really change, but I woke up more rested.

My doctor told me that I had taken to therapy very well and it sounds like you have also. So you may have properly retrained your breathing and MAYBE can use a lower pressure range.

Also, after a period of PAP therapy, many users end up shortening (or even eliminating) the ramp time. For myself, dropping ramp time to 15 minutes from the default 45 seems to signal my body to fall asleep faster.

Key with any testing/experimentation is to try new setting[s] for say, a week, and use the software to monitor changes. And try and be patient... After I dropped my pressures a bit, my first night had an AHI spike [ack, what have I done?] followed by a steady decline back to what it was before i.e. ~2.0 +/- 0.5.

Interestingly, while I dropped the minimum pressure by two, median pressure only dropped by one, signaling that I was approaching my own "sweet spot".

As you've discovered, AHI, while important, isn't the only requirement for a good night's sleep. Take a critical look at your bedroom.

Some possibilities include being an overly bright alarm clock disturbing your sleep, too hot or cold room temp, "dead air" syndrome [fixed by a ceiling fan on bull low just to move the air in your bedroom], a mattress that is no longer suitable [age DOES change both the mattress and what you may actually need in a mattress - my better half is doing better with a softer pillow-top layer, and I seem to be gravitating toward monk-like hardness SHa_biggrin5 ],

Don't forget the pillow. I have a fancy CPAP pillow, which (if I had REALLY read the instructions - DUH) has a memory foam side and a conventional side... memory foam and I don't agree - by simply turning pillow over [cue angelic chorus] my personal bad sleep indicator - restless leg syndrome - has calmed down.

This is all a process... your solution will be what works for you - take the changes one at a time, note any results, good or bad, and if you get discouraged, try to remember how REALLY lousy you felt before PAP therapy... Sleep-well
11-29-2014 11:08 PM
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