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Getting Acquainted
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robysue Online
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Location: Buffalo, NY

Post: #31
RE: Getting Acquainted
ImaSurvivor,

First, a belated "welcome to the forum" from another WNYer. I was traveling over the Thanksgiving holidays and this is the last week of classes at the college I teach at.

Some thoughts: I wish you the best of luck on dealing with the insomnia. It's plagued me for years, but the insomnia since starting CPAP has been more persistent than anything I've ever dealt with before. But I'm a far, far outlier when it comes to "bad adjustment" stories. I would say this: In retrospect I wish I had been more open to the idea of taking Ambien at the start when the PA in sleep doc #1's office first proposed the idea. It may have saved me some grief. But then again, since much of the insomnia was being fed by some really nasty aerophagia problems, maybe it wouldn't have helped all that much.

You write:
Quote:Not feeling terribly rested during the day yet but I understand with a deficit of rest, it takes time to get there. I can and have always been able to function pretty well driving and working. I was never 'in a fog' or falling asleep when I shouldn't. Just not a ton of energy. Making myself go to the gym every day after work is a mental battle because I don't feel like it, don't have the energy and just don't want to go. Once I go and get done I am happy and feel good but the mental battle is tiring too.
That pretty much described me pre-CPAP. I think that CPAP can be harder to get used to when your pre-CPAP life is pretty functional. Hopefully you won't have the same problems that I did.

I will say this: You may want to keep some kind of a "journal" where you can make some quick notes about how you're feeling each day. The improvements in how you feel on CPAP will likely be very subtle---so subtle you may miss them if you're not looking for them. In my case, the first thing that was a clear, bonafide positive PAP result was when I started to notice the phrase "woke up with no hand and foot pain" in the insomnia log I was being ask to keep to fight the CPAP-insomnia that had become entrenched and had turned my life upside down. I'd been waking up with hand and foot pain for several years before my sleep test. And it took me six months to really notice that the hand and foot pain was gone on almost every morning with CPAP. That's still the biggest, most positive difference in my life. Sounds like a little thing, but chronic pain, even when it's mild chronic pain has a way of sucking the joy of life out of you ...

So as you go through your own CPAP adventure look for small improvements at the margins and celebrate them even if you don't see any magical sudden burst of energy ....

And feel free to PM me if you ever need to actually have a chance to talk with another middle-aged OSA sufferer from WNY.
12-06-2013 03:29 PM
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ImaSurvivor Offline

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Other Comments: Moderate Sleep Apnea, Began using CPAP 11/27/2013

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Location: New York State

Post: #32
RE: Getting Acquainted
Hi robysue,

Thanks so much for your post and welcome. I understand how busy the end of semester can be! I too work in a private university (for 28 years) currently in ITS. I was in University Relations at the start, then a faculty secretary for 10 years and now work in web production in the ITS department for the past 14 years. Our daughter is actually finishing her undergraduate career at the university where I work and will receive her diploma this month. Although she is going to wait and walk in May with her friends. And she will be off to graduate school next summer in D.C.

I will indeed PM you. Will be nice to chat. It is possible you may know folks where I work. Buffalo is not all that far away. Good to know someone on here from WNY. I am not looking forward to our notoriuos winter weather.

I was prescribed Gabapentin. The doctor at the lab doesn't seem to be a fan of either Ambien or Lunesta. Not sure why. May be because they are stronger. The pharmacist told my husband when he picked up my prescript. that this is mild and many use it long term. I saw it is also used for restless legs. I had mentioned at my followup I wouldn't be surprised if I had a slight case of it. There was quite a bit of movement with my legs during the study. My Dad suffers from it and neuropathy. Neuropathy can be a side effect of chemo too. Thankfully I haven't been saddled with that. I have done two tours with chemo 14 years apart.

I have chronic pain that I just live with and have a pretty high pain tolerance. I really hate taking medication LoL. I am on arimidex for post breast cancer which causes joint and muscle pain and I know that stiff feeling you have described. I have it especially in my hands along with some arthritis. Over the last several months I have had sciatica flare ups too. That was a lot of discomfort last week for me on top of the newness of trying to move around hooked up to a hose and the pain in my hip from sciatica.

I appreciate all your words of encouragement and advice to me and others on the forum. In fact I had read your suggestion of keeping a journal on another thread and texted my husband to pick up a spiral notebook for me. He is retired and looking for things to do Smile I started making notes the day I went on therapy. I also put a journal app on my phone to keep track of AHI, leaks, usage, etc. in case I need to refer to that info while away from my notebook. Another tip I saw by someone was having bought a special bucket solely for washing CPAP equip. to avoid picking up any germs from sinks. I am constantly washing our sink out and emptying the drain traps that my family doesn't seem to see and I wash and disinfect it weekly. I bought a dishpan to use only for CPAP ... it just seems to make sense and a simple thing for extra precaution.

I find everyone on here so nice, very genuine and always willing to help with advice, tips and encouragement. Great site!
(This post was last modified: 12-06-2013 06:48 PM by ImaSurvivor.)
12-06-2013 06:35 PM
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me50 Offline

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Post: #33
RE: Getting Acquainted
I have a special bucket just for washing my CPAP equipment. I wash the mask in the sink daily but I don't soak it and it doesn't touch the sink. I just put some dawn on it and wipe it down and then rinse in warm water.

Then, weekly, I mix vinegar and dawn dishwashing soap, unscented and not antibacterial and let everything soak a short while then I rinse it and hang to dry. I can't remember who does this but when I rinse the hose, I run water through it from the kitchen sink, but, there again, the hose never touches the sink.
12-06-2013 07:48 PM
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ImaSurvivor Offline

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Machine: ResMed S9 Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
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CPAP Pressure: 10
CPAP Software: SleepyHead

Other Comments: Moderate Sleep Apnea, Began using CPAP 11/27/2013

Sex: Female
Location: New York State

Post: #34
RE: Getting Acquainted
I saw that post about running water through the hose too. I don't wash my pillows every day. But they really don't come into contact with the face or oils that would affect the seal. I did have a freebie CPAP mask wipe I used half way through the week. Might pick up some of those at some point. The therapist told me instructions say to wash everything every day. Then he countered it with saying most do it once a week because no one has that much time in their lives ... LoL. I have the unscented Dawn minus anti bacterial agent and white vinegar ready to go. Just adding the job to my Saturday cleaning chores.
12-06-2013 08:22 PM
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PaulaO2 Offline
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Location: western NC, USA

Post: #35
RE: Getting Acquainted
To clarify, because I am in that kind of mood, Bigwink Restless Leg Syndrome (RLS) is a day time thing. Leg/limb movement during sleep is called Periodic Limb Movement Disorder (PLMD). A person can have one or both. RLS can happen just as a person is getting ready to sleep (which is irritating as crap) and can continue shortly after falling asleep but is limited to leg movement and the usual "itchy crawly" feeling.

PLMD is often noted on sleep studies in relation to if they coincide with an apnea event, how bad the event was, etc. Often the more worse the event, the more violent the movement. (I once kicked my 85lb Rottweiler over the foot board of the bed and onto the floor. She was not happy.)

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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.
12-06-2013 10:51 PM
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ImaSurvivor Offline

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Posts: 322
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Machine: ResMed S9 Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
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CPAP Pressure: 10
CPAP Software: SleepyHead

Other Comments: Moderate Sleep Apnea, Began using CPAP 11/27/2013

Sex: Female
Location: New York State

Post: #36
RE: Getting Acquainted
Thanks for the clarification PaulaO2. I re-read my sleep study report. My sleep doctor mentioned in my report restless leg syndrome (among a lot of othet things) can be a potential cause of PLMS. I haven't had the itchy crawly feeling. My Dad always described it as a need to move his legs. When lying or sitting still he would have a sensation to move his legs to a more comfortable position. When he did so, he would get the sensation all over again. He couldn't get them comfortable.

I have a sensation when sitting in a recliner or laying on bed, with my legs up, that I need to stretch them longer than they will go. They aren't long enough to stretch as far as I feel I need to stretch to satisfy the feeling. I remember doing it a lot before sleep at the sleep study. It is an odd thing to me. It comes on often. I have tried to see if there is a correlation of any activity I have done in the gym that day but just not sure. I have also wondered if it is Restless Leg Syndrome since I know my Dad suffers from it.
12-07-2013 08:22 AM
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PaulaO2 Offline
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CPAP Software: SleepyHead

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

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Location: western NC, USA

Post: #37
RE: Getting Acquainted
Yep, that's how I've heard it described, both your dad and yours. Mine is like your dad's. Like I absolutely have to move them. No position seems to make the dang things happy. It is quite annoying! Luckily it seems to happen in fits and spurts rather than daily.

I did some reading and a lot of people with RLS (80%) also have PLMD. RLS is a "feeling" of the need to move and you're awake while PLMD is actually moving but you're asleep and not aware of it.

PaulaO2
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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.
12-07-2013 01:42 PM
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ImaSurvivor Offline

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Posts: 322
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Machine: ResMed S9 Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: H5i Heated Humidifier, ClimateLine Tubing
CPAP Pressure: 10
CPAP Software: SleepyHead

Other Comments: Moderate Sleep Apnea, Began using CPAP 11/27/2013

Sex: Female
Location: New York State

Post: #38
RE: Getting Acquainted
It all makes total sense then. Mine too is not daily and what I would consider mild when I have it. It doesn't drive me to distraction. I just know it is there. Since I seem to hit every bump in the road with my health, I consider a mild case not a big issue. Soldier on with the big stuff.
12-07-2013 01:51 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: #39
RE: Getting Acquainted
Sometimes, though, its the little stuff that causes me the most grief. I guess because I feel like I *can* complain about them. I can't do crap about the Big Stuff but I can about the splinter in my toe so by georgianna, I'm gonna go on and on about that splinter.

And remember, it wasn't the bag of grain that broke the camel's back, it was the single straw. So take care of all the little stuff, too. Mask noises, machine whistles, hoses that seem to have a life of their own, that's what we are here to help each other get control over.

PaulaO2
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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.
12-07-2013 08:29 PM
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PaulaO2 Offline
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Moderators

Posts: 8,065
Joined: Feb 2012

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: #40
RE: Getting Acquainted
Zoohouse, I split your post to a thread of its own. You can find it here:

[never mind]

This way it can get the attention it (and your husband!) deserves.

Edited to add: since you created another thread, I deleted the one I moved.

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.
12-07-2013 11:27 PM
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