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I Can't Sleep Or Stay Asleep
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Schnauzers 5 Offline

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Joined: Mar 2012

Machine: Respironics Rem Star A Flex
Mask Type: Nasal pillows
Mask Make & Model: LT swift for her
Humidifier: Respironics, I guess
CPAP Pressure: 9-14
CPAP Software: Not using software

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Sex: Female
Location:

Post: #1
I Can't Sleep Or Stay Asleep
I am so stressed out about my eye situation I can't relax no matter how I try. I take deep breaths and hot baths but this is got me so upset. I don't seem to get any compassion from anyone as to what I am going thru. To tell me to calm down feels insulting. Who among us wants to loose an eye or vision in one or both? Nothing anyone can say helps really but I still ask for some caring, understanding from friends.It was a mistake to email my heartless sister because she barely commented and told me about herself and how her surgery was successful and how well she is doing after her recent broken hip. I like my c-pap and do well with it usually. My problem is the headgear slipping up the back of my head or nearly off or when I need new nasal pillows. I never try to take it off in my sleep or have a problem that I know of of the hose getting caught under me or around my head.

I am just afraid and hurting right now. I am sorry, I am just not strong about this. I did work today and did laugh and the weather here is great, but it always comes back in my mind and I get stressed and afraid again. I am trying to pretend everything is normal and maintain a normal day. Waiting til Mid May for any consultation is killing me.
04-05-2013 01:04 AM
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Kellysfriend Offline

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Posts: 11
Joined: Apr 2013

Machine: Resmed S9
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage FX for Her
Humidifier: unsure
CPAP Pressure: 9
CPAP Software: SleepyHead

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Sex: Female
Location: Oceanside, CA

Post: #2
RE: I Can't Sleep Or Stay Asleep
I am sorry your are stressed and no body is there for you. We hope our family would step up for us and just like you saw today, they are often the ones who disappoint us the most. That old saying about laugh and the whole world laughs with you, cry and you cry alone sure is true. Somebody said once that most people are pretty much caught up in what is going on in their own life and they think the world revolves around them. How can the have compassion when that is their whole goal? I know this does not make you feel better or give you compassion, hopefully it explains that the indifference of individuals is not personal, they just do it. That stuff they tell us about being there for ourselves is really true. I wish the doctor could see you sooner than the middle of May. Knowing one way or the other helps.


(04-05-2013 01:04 AM)Schnauzers 5 Wrote:  I am so stressed out about my eye situation I can't relax no matter how I try. I take deep breaths and hot baths but this is got me so upset. I don't seem to get any compassion from anyone as to what I am going thru. To tell me to calm down feels insulting. Who among us wants to loose an eye or vision in one or both? Nothing anyone can say helps really but I still ask for some caring, understanding from friends.It was a mistake to email my heartless sister because she barely commented and told me about herself and how her surgery was successful and how well she is doing after her recent broken hip. I like my c-pap and do well with it usually. My problem is the headgear slipping up the back of my head or nearly off or when I need new nasal pillows. I never try to take it off in my sleep or have a problem that I know of of the hose getting caught under me or around my head.

I am just afraid and hurting right now. I am sorry, I am just not strong about this. I did work today and did laugh and the weather here is great, but it always comes back in my mind and I get stressed and afraid again. I am trying to pretend everything is normal and maintain a normal day. Waiting til Mid May for any consultation is killing me.
04-05-2013 03:40 AM
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DocWils Offline

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Posts: 1,271
Joined: Jul 2012

Machine: Philips Remstar series 60
Mask Type: Nasal pillows
Mask Make & Model: ResMed P10
Humidifier: same as machine
CPAP Pressure: 5-15
CPAP Software: SleepyHead

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Sex: Male
Location: Switzerland

Post: #3
RE: I Can't Sleep Or Stay Asleep
I know this is a frightening time, but you need to let it go if you can (stupid to say it, really, as you are hearing it all the time, I am sure). It sucks that you have to wait for so long, but on the plus side, it means there is no emergency - trust me, it this was dire, they'd have you in in a heart's beat, so this is positive in that sense. And you have fully qualified and experienced people looking at your case, so take comfort in that. Remember, dealing with eyes all they do - they have lots and lots of experience in it, so let them guide you and trust that they can and will do whatever they can for you. It may not come to losing your eyesight, so wait and see how it works out. Doctors are big on describing the worst case scenario, partly to be sure you are fully informed, and partly to cover their asses should the planned procedure not work. But until the procedure is done, there is no way to be sure, so just wait. They will bend over backwards to do their best for you when the time comes. I know that you are frightened, but what is frightening is the unknown quantity, and that may be as small as zero, so try not to jump at shadows.

As for the hose, do what I do and tack it to the wall over the bed (or get one of the hose holder arms) and it is out of the way - I can roll form side to side and the hose is never caught or tangled, and the nasal pillows stay seated. You will need to fiddle a bit until you get the right amount of slack so that the mask isn't pulled around when you move. I keep the back strap from slipping by pulling some of my hair out over the strap once I get it in place. My hair looks a right mess in the morning, but at least the gear stays in place all night.
04-05-2013 06:28 AM
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Sleepster Offline
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Posts: 4,988
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
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: #4
RE: I Can't Sleep Or Stay Asleep
(04-05-2013 01:04 AM)Schnauzers 5 Wrote:  Nothing anyone can say helps really but I still ask for some caring, understanding from friends.

When I got to this point almost two years ago I knew something was amiss. I'm so glad I contacted my insurance company and got a referral to see a mental health provider. Those discussions I had changed my life. That, combined with CPAP therapy, has made me happier than I have ever been in my life.

Quote:My problem is the headgear slipping up the back of my head or nearly off or when I need new nasal pillows.

Call your equipment provider and see if they can fit you with a different mask. There are a lot of choices out there and they may be able to find a different one with a different strap geometry better suited to your needs.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


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.
04-05-2013 09:15 AM
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Schnauzers 5 Offline

Preferred Members-2

Posts: 184
Joined: Mar 2012

Machine: Respironics Rem Star A Flex
Mask Type: Nasal pillows
Mask Make & Model: LT swift for her
Humidifier: Respironics, I guess
CPAP Pressure: 9-14
CPAP Software: Not using software

Other Comments:

Sex: Female
Location:

Post: #5
RE: I Can't Sleep Or Stay Asleep
Thank you all, it does help to talk to you about this I wear the headgear and pillows like the picture of the lady on this first page when we click to see Apnea Board I think it is called the swift LT for her. I need a pony tail to hold it but my hair is short.

I got an appt with a different surgeon a few miles down the road on Monday with yrs of experience and probably even has Dr H do the measurements who is the associate who said the scarey info They are in different eye centers not affiliated with eachother necessarily. He is under the top five listed So I will stop by today with all my info and fill out forms today so all I have to do is show up Monday at 8AM.

Since this topic isn't exactly sleep apnea related should I go to off topic for updates? Thanks for reading my story and caring. It does help.
04-05-2013 11:16 AM
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Christenson-the-Geek Offline

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Machine: F&P Icon "Auto"
Mask Type: Nasal pillows
Mask Make & Model: unsure/varies (Resmed FX nasal pillows)
Humidifier: heated
CPAP Pressure: 14cm
CPAP Software: Not using software

Other Comments: Software/Electronic Engineer

Sex: Male
Location: Charlottesville, VA area

Post: #6
RE: I Can't Sleep Or Stay Asleep
This is a support board, I don't think the topic should be moved. You have an additional sleep problem! And losing sight is distinctly a good reason to be scared. I hope you feel better soon. I think you need an appointment with your sleep doctor asap for help on this. You may want to read up on CPAP-related insomnia.

I just got myself some (hair)do-rags last night, from Wal-mart. What an improvement to both my beard and regular hair, they have *never* looked this straight in the morning, especially not after showering before bed! (I wear a chin-strap and a Res-med FX nasal pillows), am at about day 50 of treatment and still trying to control leaks.

I also found eucerin cream to be extremely helpful with the nasal pillows. Don't be afraid to change sizes. Don't be afraid to ask for an extra set of them.

On a practical level, since you are feeling anxious about your eyes, tell the scheduling person that you would really like to see the doctor/surgeon sooner, can they call you if a cancellation makes a time slot available? That significantly shortened my wait time for my second sleep study, after I found out I had an apnea problem.
04-07-2013 01:28 PM
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Schnauzers 5 Offline

Preferred Members-2

Posts: 184
Joined: Mar 2012

Machine: Respironics Rem Star A Flex
Mask Type: Nasal pillows
Mask Make & Model: LT swift for her
Humidifier: Respironics, I guess
CPAP Pressure: 9-14
CPAP Software: Not using software

Other Comments:

Sex: Female
Location:

Post: #7
RE: I Can't Sleep Or Stay Asleep
I am seeing a new eye doc this Monday and found another in Best Phoenix doctors in the magazine. I have NO sleep doctor as they went bankrupt in January and only recently notified me! The jerks. BUT
I have a client ( I groom her dog) who works for lung doctors and they also do sleep therapy and have a sleep lab. I will call her Monday and get info to set up an app with her bosses. Funny, how sometimes you know or meet someone who has just the right info for you.

I used to almost always sleep thru 7 hrs or til dogs barked or alarm went off. Now I sleep 2-3 hrs and wake up. I am not startled or heart beating fast; nothing like that, I am dreaming nicely and just wake up. Like I slept all night but I am surprised it is dark and only three hours later. I go back to sleep usually til 4 or 5 and am now awake 2-3 hrs before I need to be. Melatonin not helping. I can't take antihistamines due to dry eyes. It will work itself out, I am sure.
04-07-2013 05:24 PM
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JJJ Offline

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Post: #8
RE: I Can't Sleep Or Stay Asleep
(04-07-2013 05:24 PM)Schnauzers 5 Wrote:  I used to almost always sleep thru 7 hrs or til dogs barked or alarm went off. Now I sleep 2-3 hrs and wake up. I am not startled or heart beating fast; nothing like that, I am dreaming nicely and just wake up. Like I slept all night but I am surprised it is dark and only three hours later. I go back to sleep usually til 4 or 5 and am now awake 2-3 hrs before I need to be. Melatonin not helping. I can't take antihistamines due to dry eyes. It will work itself out, I am sure.

Waking up frequently during the night is not uncommon. Like you, I used to go to sleep and the next thing I knew it was morning. Over the years I began waking up more and more often. Before CPAP I was waking up 6-7 times a night. That means that I probably wasn't getting a full dose of REM sleep, since each full sleep cycle is around 1.5 hours.

After several months of CPAP I was still waking up just as often, although the doc and respiratory therapist both said I would sleep without waking up once I got on CPAP. Eventually I went to see the sleep doc. After going through the usual checklist (no, I don't drink coffee before bedtime, etc.) she suggested that it might be a condition known as psychophysiological insomnia. What happens is that your body wakes up in response to the apneas and eventually thinks it needs to wake up, even though the apneas are later eliminated with the CPAP therapy. It's like your body has developed a habit of waking up.

She suggested cutting down on my hours of sleep in order to make me sleepier at bedtime. The idea is that this would then create deeper sleep so I wouldn't wake up. using this technique I could eventually retrain my body to stay asleep. I tried it for maybe a week before giving up. Cutting down on my hours of sleep just made me fall asleep during the day.

My doc also said that if it didn't work there was another sleep doc who practiced in the same building who specialized in this problem. Since then my awakenings are down from 6-7 a night to 4-5, so I'm making progress. I am skeptical about what the specialist can do, so I haven't followed through with a referral.

Now you know a new term you can use when you go see the sleep doc. Smile
04-07-2013 07:48 PM
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Sleepster Offline
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Posts: 4,988
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
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: #9
RE: I Can't Sleep Or Stay Asleep
I think that all a specialist can do is, after checking for physical causes, counsel you on good sleep hygiene techniques. Exercising regularly is also a very good idea. I think that a week isn't long enough to break your body of the habit, but like you, I'd rather suffer the symptoms than suffer the cure. I'll sleep when I can for as long as I can.

I have noticed that after 17 months of CPAP therapy I now can go longer without waking up, and I wake up fewer times per night. My average time in bed (as measured by the CPAP machine) has dropped from about 9 hours a night to 8. I know I'm getting better quality sleep and I do notice that if I sleep fewer than 7 hours a night for a few nights in a row I do start to sleep deeper and go longer between awakenings.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


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.
04-07-2013 08:40 PM
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Schnauzers 5 Offline

Preferred Members-2

Posts: 184
Joined: Mar 2012

Machine: Respironics Rem Star A Flex
Mask Type: Nasal pillows
Mask Make & Model: LT swift for her
Humidifier: Respironics, I guess
CPAP Pressure: 9-14
CPAP Software: Not using software

Other Comments:

Sex: Female
Location:

Post: #10
RE: I Can't Sleep Or Stay Asleep
I have been on c-pap for about eight years.On and off thru these year I have sleep changes. I think the wrong food also plays a part and maybe even silent reflux too, I know for a fact that spaghetti sauces no matter how pure, keeps me awake, as does citrus My grandmother used to say. " Oranges in the morning are gold, silver at noon and lead at night. I think she was correct. I think food plays a part often for many people or medications. My only medication is Restasis for eyes. No side effects. Worry is no doubt the biggest factor.
04-07-2013 09:23 PM
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