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Hello, I'm new to this forum - not able to acclimate to CPAP
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tekis Offline

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Posts: 30
Joined: Mar 2013

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: ResMed
CPAP Pressure: 4-13
CPAP Software: SleepyHead

Other Comments: Mild Sleep Apnea, Restless Leg Syndrome (severe), and Alpha Intrusion

Sex: Male
Location: NY, NY

Post: #1
Hello, I'm new to this forum - not able to acclimate to CPAP
Hi: A couple of years ago, I was diagnosed with mild sleep apnea, restless leg syndrome (severe) and alpha intrusion. My quality of sleep is very poor and I'm constantly fatigued.

A year ago, I had my deviated septum fixed and my breathing has improved, but I still can't sleep and I feel tired and really run-down all the time. I've never been able to acclimate to the CPAP machine. I've never felt any benefit from it. I think the most I could go on it was a couple of weeks.

I've been thru every kind of restless leg medication and sleeping pill. Sleeping pills seem to offer short-term relief, but I don't like their side-effects.

I guess I'm going to give this CPAP thing another go, while I wait to have an endocrine profile (I have low testosterone and am losing weight like crazy).

I've taken up yoga and meditation. Both of which I like, but there's nothing like a decent night's sleep. I've been like this for years. Every once in a while I get really depressed.

I have a lot to live for: I have the best job in the world (hardly performing up to full potential when I'm so darn tired, though.), a great family, amazing friends, etc.

I'll publish my sleep study scores another time. I guess I'm gonna wear this thing a night at a time.

Thanks for being here!

Disconsolate but not completely hopeless,

John S.
03-26-2013 10:34 PM
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Shastzi Offline

Advisory Members

Posts: 919
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #2
RE: Hello, I'm new to this forum.
Hi tekis!
You are in the right place.

Welcome

meditation is good. I use it everyday to relax or help fall asleep.
That Far Eastern stuff really works!

Sleeping pills, as you have noticed, dont really help you sleep so much as knock you out.
The thing you might want to consider is updating your equipment.
I have a RemStar Plus I recently delegated to "emergency back up CPAP" my main workhorse is the
ResMed S9 Autoset. What a difference!
The data that the S9 collects I feed to my SleepyHead program so I can actually see what went on last night and find ways to correct issues. I have no insurance so I had to smash my piggy bank to pay for it but it has been worth every penny so far.
***
The alpha intrusion I'm not sure about.
Hopefully you can get the apnea on a short leash and this may improve the other issues. (your mileage may vary)
However..you'll have one less problem to mess up your sleep and you will be able to minimize/eliminate the rest
***
There is a pretty good crew here with varied experience and I hope you'll be able to stay on the path to getting relief!

Best of Luck!

Sleep-well

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
03-27-2013 05:01 AM
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PaulaO2 Offline
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Moderators

Posts: 6,225
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Nuance (non-pro)
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome

Sex: Undisclosed
Location: western NC, USA

Post: #3
RE: Hello, I'm new to this forum.
Consider the CPAP to be a medication. Many medications take time to not just "get into your system" but often even longer to have results be noticeable. Medications also need to be adjusted and checked on a regular basis. CPAP use is no different.

Some people can take up to a year to notice enough of a difference. Some people take just a few nights.

If it has been a while since your last sleep test, I suggest having another one done. Besides just time, your weight loss may have affected it. And if you have insurance, get another machine. The "Plus" in your machine means it is a leaf blower. The only thing it tracks is hours used. Using the medication analogy, no doctor would ever prescribe hypertension medication yet never check the patient's blood pressure again. Avoid any Phillips Respironics with the word "Plus" in the name and any Resmed with "Escape" in the name. Icon is another good machine but software to read it is not free although the newer ones work with SleepyHead software.

How many masks did you try? Nearly all of us had to go through several masks to find the one that fit us and our sleep style.

Sit up during the day with the mask and machine on. This helps you and your body get used to the sensation of the air and the mask.

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.
03-27-2013 12:48 PM
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tekis Offline

Preferred Members

Posts: 30
Joined: Mar 2013

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: ResMed
CPAP Pressure: 4-13
CPAP Software: SleepyHead

Other Comments: Mild Sleep Apnea, Restless Leg Syndrome (severe), and Alpha Intrusion

Sex: Male
Location: NY, NY

Post: #4
RE: Hello, I'm new to this forum.
Hello and thanks for the reply. Before I spend $800 on the latest CPAP wouldn't the one I own now work for me, if sleep apnea is the main reason I feel the way I do? It's been checked and set up by the doctor. Don't get me wrong. I'd buy that thing today if I knew it would make me feel any better! I've worn this thing for over two weeks and it didn't make a bit of difference. I want to say that the doctor said I had mild sleep apnea, and that RLS was very bad. Anyone with RPLS and Alpha Intrusion around? Thanks.

I don't have insurance, but the doctor said my machine was fine. I could spring for a fancy machine if I felt it was a sure thing. I've never felt a bit of difference from the one I have now. Before I had my nose fixed it made me feel horrible. I would tear it off in the middle of the night and my extremities would feel very achey in the morning, and I'd have a headache on top of it! I tried one or two masks. They don't bother me, really.

I'll try it again tonight. I have a really important job on May 18th where I've got to be in top from. My endocrine profile is on May 5th. We'll see I suppose.

Thank-you for being here.
(This post was last modified: 03-27-2013 01:04 PM by tekis.)
03-27-2013 12:55 PM
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zonk Online

Advisory Members

Posts: 6,746
Joined: Feb 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: H5i
CPAP Pressure: 9/14
CPAP Software: ResScan

Other Comments: CPAP since Nov

Sex: Male
Location: Australia

Post: #5
RE: Hello, I'm new to this forum.
(03-27-2013 12:55 PM)tekis Wrote:  I don't have insurance, but the doctor said my machine was fine. I could spring for a fancy machine if I felt it was a sure thing. I've never felt a bit of difference from the one I have now. Before I had my nose fixed it made me feel horrible. I would tear it off in the middle of the night and my extremities would feel very achey in the morning, and I'd have a headache on top of it! I tried one or two masks. They don't bother me, really.
Sorry to hear things are overwhelming right now
Headache in the morning mean something is not right, need to search for the cause
If the headache from blood oxygen desaturation during apnea (airways blockage for at least 10 sec or more) or hypopnea (partial airways blockage at least 10 sec or more) events during sleep. RemSTAR Plus does not show number of breathing events and duration of each event in seconds (AHI) per hour to ascertain the effectiveness of the treatment
The right mask is important too, without good mask fit, there is no effective treatment

So data is not some fancy features, data is mandatory for apnecis as its for heart "monitors" patients

Oximeters are cheap and would show blood oxygen level drop during the night.
I don,t use one but few members do use them and can help you to choose one
03-27-2013 02:25 PM
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Shastzi Offline

Advisory Members

Posts: 919
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #6
RE: Hello, I'm new to this forum.
What zonk said I have experienced first hand.
Without the rich data you don't really know how well the machine is doing it's job.
The oximeter will help by telling you if you are still in the danger zone or not.
The new ones collect heart rate and O2 saturation and can be worn on the wrist.
Do not go buy one from Walmart. It wont work. (not robust enough)
Look for the Contac CMS50-F $150 and the software is free SPO2 Assistant.
That will get you started.

Hang in there!
Sleep-well

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
03-27-2013 02:43 PM
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trish6hundred Offline

Advisory Members

Posts: 3,224
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Nasal pillows
Mask Make & Model: Resmed AirFit P10 For Her
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: #7
RE: Hello, I'm new to this forum.
Hi tekis,
WELCOME! to the forum.!
What everyone has said so far.
Best of luck.

trish6hundred
03-27-2013 02:54 PM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 6,225
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Nuance (non-pro)
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome

Sex: Undisclosed
Location: western NC, USA

Post: #8
RE: Hello, I'm new to this forum.
Supplier #2 in the Supplier's List has used and open box machines at great prices.

While it is good your doctor says "it is fine", the problem is...how will he know it is working? He won't. How will he know the pressure is what it needs to be? He won't. How will he know that you have central events when the pressure is high? He won't. Because the machine you have is not data capable.

And the thing is, all you will be going by is how you feel and perhaps an oximeter. But not everyone has O2 drops during/after events and certainly not after every event. You won't know if it is working or if it needs adjusting.

With a data capable machine, you both will know how it is or is not going for you. Yes, data is but one part of the solution, but it is a big part. Combine it with how you feel and how awake you stay during the day, and there will be no doubt as to how treatment is going. Yes, treatment would be the same but you would know for sure.

Like, if you were a diabetic and your doc prescribed a medication but never tested your blood again. The two of you only went by how you felt and if you had any symptoms such as the shakes or whatever. That method of treatment is unacceptable for diabetes and "brick" machines should be unacceptable for sleep apnea. Both are just as serious and both can have serious consequences when not managed properly.

Restless Leg Syndrome (RLS) is a daytime disorder. It can happen when one lies down to sleep but rarely happens during sleep. Periodic Limb Movement Disorder (PLMD) happens at night and is very common with people with sleep apnea. It is the brain trying to wake the person up so they open their throat. A person can have one or both.

I am one of those blessed with both. I had PLMD so bad, I once kicked my 85lb Rottweiler up and over the foot board of the bed. With time and treatment, the PLMD should go away. I do it every once in a while now, usually when very tired.

RLS is a tough beastie to master. It really depends on the cause. Some say that walking helps and certainly less sitting helps. Friend of mine uses a standing desk and has decreased hers a lot. For me, we found it was related to my potassium levels. I was on a supplement for a while until we could switch my other medication that depleted potassium (some blood pressure medications do this). Now if I experience it, I eat a banana or some other potassium rich food and ride it out.

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.
03-27-2013 04:10 PM
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Dawei Offline

Advisory Members

Posts: 260
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Respironics "FitLife"
Humidifier: H5i
CPAP Pressure: 10-20
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Western North Carolina

Post: #9
RE: Hello, I'm new to this forum.
John S., welcome to the forum. I had a machine like yours and used it for five years set to the initial pressure that came from my first sleep study. What I discovered was that my body changed and along with that so did my CPAP needs. Sometime during that period, the pressure set on my M series was no longer stopping me from having apneas. It took a new sleep study followed by a switch to an auto machine and some time experimenting (the doc and I) to find a pressure range that works.
During that process, the auto machine allowed me to take printouts of my sleep data to doctor's appointments where he could fine tune the settings I needed. Without a data capable machine, the only two options for the doc were to either guess at appropriate settings for me or for him to suggest yet another sleep study. That is, he was about as in the dark as I was.
One other comment to share is that mild sleep apena is apnea nonetheless! The adjective only refers to the number of apnea events occurring in which you stop breathing for at least 10 seconds during sleep. It doesn't mean that because it's called mild, it cannot harm your health in serious ways.
03-27-2013 06:14 PM
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tekis Offline

Preferred Members

Posts: 30
Joined: Mar 2013

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: ResMed
CPAP Pressure: 4-13
CPAP Software: SleepyHead

Other Comments: Mild Sleep Apnea, Restless Leg Syndrome (severe), and Alpha Intrusion

Sex: Male
Location: NY, NY

Post: #10
RE: Hello, I'm new to this forum.
Alright. Where shall I buy the machine from? Group conscious has convinced me that it's the right thing to do. I saw a price of around $850. Is this against the rules of the forum to ask this? If so, perhaps someone could private message me. Also, I would buy a used one. Thanks for all the kind support. I'm desperate to get better and start living. I feel like the walking dead. I may see my doctor tomorrow and I'll get her to write the prescription.

PS: Could someone please give me a couple of different models/makes. How's "Sleep Style" or the "S9 Escape Auto"? My doctor uses a firm which sells these brands.
(This post was last modified: 03-27-2013 10:52 PM by tekis.)
03-27-2013 10:38 PM
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