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[Treatment] I've tried everything and nothing helps. Any tips?
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jcunningham7 Offline

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Joined: Oct 2012

Machine: Devilbiss
Mask Type: Nasal pillows
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Humidifier: Devilbiss
CPAP Pressure: 11
CPAP Software: Not using software

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Sex: Male
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Post: #1
I've tried everything and nothing helps. Any tips?
I'm a 25 year old male who's had symptoms of sleep apnea since I was about 12 years old and I was officially diagnosed with severe OSA about 5 years ago at the age of 20. I'm slim/in shape, exercise regularly, never have smoked and have no other health problems. I have tried pretty much everything under the sun to combat the excessive daytime sleepiness including surgery to open my airway, CPAP, and Provigil and nothing seems to work for me. I always seem to wake up in the morning more tired than I went to sleep the night before. I've went to a second ENT doctor and he told me my surgery was done perfectly and there was nothing else he could do. I've had a second sleep study done a couple of months ago and had my pressure retitrated to 11 cwp and also tried a new style of mask. I've taken caffeine pills a few times and the energy boost only lasts for about 25 minutes before I'm tired again. I've had blood and urine samples taken and the only thing my doctor found was that I had low vitamin D levels, for which I have been taking supplements and my current levels are in a healthy range. Most recently, I was prescribed Provigil which does very little for me. For very short periods of time, maybe 30 minutes or so, while on Provigil I'll have a laser like focus with no energy gain and yet somehow I still get a major crash soon after and I'll want to do nothing but sleep. I've heard that people who suffer from depression can have problems with their energy levels as well, but I have no other symptoms of depression and I'm always in a good mood. I want nothing more than to wake up every morning feeling fully rested. Is there anything left to try?
10-01-2012 02:11 PM
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jdireton Offline

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Machine: Resmed S9 Elite
Mask Type: Nasal mask
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CPAP Pressure: 12
CPAP Software: ResScan

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Sex: Male
Location: Florida

Post: #2
RE: I've tried everything and nothing helps. Any tips?
j,

Welcome to the board!

I don't want to speak for anyone else, but I think you need more help than we can provide. There's a lot of us here that know a lot about xPAP treatment and I think we help a lot of people who otherwise would quit.

But I do know that there are members who have used Provigil and other drugs and had different surgeries. I'll leave it to those with experience to give you advice.

I can tell you're tired in many ways and I hope you can get some good direction.
10-01-2012 03:51 PM
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PaulaO2 Offline
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Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #3
RE: I've tried everything and nothing helps. Any tips?
Yes, one of the symptoms of depression is excessive tiredness. But it is also the symptom of chronic fatigue syndrome, fibromyalgia, and others.

You say you tried CPAP. Are you still using it? Is your machine data capable? If it is, download SleepyHead and view the data.

If your mask leaks, you're not getting adequate sleep.
If you breathe with your mouth open, you're not getting adequate sleep.

Viewing the data will help know the answers.

What was your O2 during the sleep test? How is your O2 during the day, like when at the doc visit?

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
10-01-2012 04:00 PM
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jcunningham7 Offline

New Members

Posts: 3
Joined: Oct 2012

Machine: Devilbiss
Mask Type: Nasal pillows
Mask Make & Model:
Humidifier: Devilbiss
CPAP Pressure: 11
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #4
RE: I've tried everything and nothing helps. Any tips?
Jdireton,
Thanks I hope I do as well.

Paula02,
I'm still using my CPAP daily and according to Intellipap (Devilbiss version of sleepyhead) there are no leaks and my AHI is only 2.5. My oxygen levels were at 94% when awake and at the lowest 94% when sleeping.
10-01-2012 04:22 PM
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PaulaO2 Offline
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Posts: 8,065
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Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #5
RE: I've tried everything and nothing helps. Any tips?
Then I think you just ruled out sleep apnea. There are other sleep disorders. Do you have a certified sleep doc or 'just' an ENT?

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
10-01-2012 05:26 PM
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jcunningham7 Offline

New Members

Posts: 3
Joined: Oct 2012

Machine: Devilbiss
Mask Type: Nasal pillows
Mask Make & Model:
Humidifier: Devilbiss
CPAP Pressure: 11
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #6
RE: I've tried everything and nothing helps. Any tips?
I just have an ENT as of now
10-01-2012 05:27 PM
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archangle Offline
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Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #7
RE: I've tried everything and nothing helps. Any tips?
Sometimes you have to tinker. For instance raising your minimum pressure.

About the only risk other than discomfort of higher pressure is getting central apneas and making your apnea worse. If this becomes a problem for you, it will show up in your AHI number.

Get a recording oximeter. You can buy one for under $100 at Supplier #19.

It MUST be a RECORDING oximeter to help with apnea.

Do you have any trouble sleeping or problems with the CPAP? How long do you sleep? If you let yourself sleep as long as you want, how long do you sleep?

It's a shame you got a CPAP machine that doesn't record airflow waveform data. That can spot a lot of problems you won't see from AHI data alone.

Have you tried experimenting with no caffeine, etc.? Experiment with foods as well, for instance, no grains for a week or so, then no meat for a week or so.

Try (temporarily) more vitamins, especially D and multi-B vitamins.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
10-01-2012 08:10 PM
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Dawei Offline

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Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Respironics "FitLife"
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CPAP Pressure: 10-20
CPAP Software: ResScan SleepyHead

Other Comments: Began CPAP in 2006; spent the first 6 years with a "brick"

Sex: Male
Location: Western North Carolina

Post: #8
RE: I've tried everything and nothing helps. Any tips?
Jcunningham, I agree with the thought of jdireton that your problem may well be out of our league to answer. I'd also second Paula's thought when she asked about whether you've been seeing an ENT or a certified sleep doc. The sub-specialty of sleep medicine is offered to docs in seven specialties. Of that group of seven, pulmonologists who are also boarded sleep docs makes the most sense to me. I'd suggest you see one to get another opinion about what's going on in your situation.
10-01-2012 09:58 PM
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trish6hundred Offline

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Machine: Resmed S9 AutoSet for Her
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Mask Make & Model: Fisher & Paykel Simplus
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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: #9
RE: I've tried everything and nothing helps. Any tips?
Hi jcunningham7, WELCOME! to the forum.! I hope you can find out what is going on with your sleep problems and your health in general.

trish6hundred
10-02-2012 12:36 AM
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vsheline Offline

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Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
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CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #10
RE: I've tried everything and nothing helps. Any tips?
(10-01-2012 09:58 PM)Dawei Wrote:  Jcunningham, I agree with the thought of jdireton that your problem may well be out of our league to answer. I'd also second Paula's thought when she asked about whether you've been seeing an ENT or a certified sleep doc. The sub-specialty of sleep medicine is offered to docs in seven specialties. Of that group of seven, pulmonologists who are also boarded sleep docs makes the most sense to me. I'd suggest you see one to get another opinion about what's going on in your situation.

Hi jcunningham7,

I suspect some sleep docs do not pay much attention to flow data, mostly focusing mostly on AHI and hours per night of usage. Sometimes we need to investigate things for ourselves, and I think treatment of our sleep apnea is an area in which we can do this, by becoming very actively involved in monitoring our own xPAP data and pulse oximeter data, and bringing our findings to our doctors.

I think it is too soon to conclude that xPAP therapy cannot help a great deal more than it is helping at present.

If you can get a fully data-capable machine (for example, perhaps you can manage to pick up a used ResMed S9 AutoSet from Supplier #2 and an economical recording pulse/oximeter) and if you will invest the time to look over your xPAP data and pulse/oximeter data regularly (and even post samples on this forum for others to comment on), you may discover things (like periodic breathing or atrial fibrillation, or whatever) which need treatment and which you can bring to the attention of a sleep doctor (or other doctor).

Good luck and take care, and don't give up looking for the cause(s) of your fatigue.

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 10-02-2012 03:26 AM by vsheline.)
10-02-2012 03:10 AM
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