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Sleepycarol's Comments

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At 8:21am on February 6, 2011, Donna Medin said…

Thank you for the welcome!  I have had my cpap since April 2010.  It has been a challenge because it's set at 17.  I use medication to help me sleep.

 

 

At 5:29am on February 6, 2011, Lycinda Richardson said…
Thank you for the welcome!  I have had my cpap for almost 10 years now.  I was looking for a site for my ex-husband who was recently put on one.  So far I love what I have seen when I have had the chance to tool around this site :)
At 11:33pm on February 5, 2011, Sheryl J. Runyon said…

Where is Sedalia,Mo?

 I appreciate your input on my new equipment.  I got the Resmed S9 auto cpap with humidifier and ClimateLine heated tubing. My doc and provider picked it for me. Really didn't have much to say about it. I told them I wanted to try Auto cpap and they let me pick my mask. I really like the mask,so far anyway. I have only used it one night. Got it Friday. Its the Sleep Weaver Advanced. So comfortable,I can't believe it.Unfortunately my heated tubing was defective and it shut my machine down about 3:30 this morning. UGH  Was able to get hold of my provider and he said I could use the machine without the heated tubing feature. I sure hope everything works tonight. Only got about 4 hrs sleep last night. 

   Thanks for the welcome.

                  Sheryl

At 9:42pm on February 5, 2011, Fred said…

Thank you for the welcome. I've been at it for a couple of months now still learning and trying to go all night with the mask. I have been fighting a cold and that don't help but I have been on the computer learning as much as posable. between that and fighting all this snow in central IL Iv'e been busy.

                                                                         Thanks again

                                                                                Fred

At 11:29pm on February 2, 2011, Adi said…

Thank you for welcoming me.  I intend to start spending lots of time in this group.

 

Cheers,
Adi 

At 9:19am on January 7, 2011, Tom Cannon said…

Thank you for the welcome; I'm still learning my way around the site.

Best, Tom

At 1:17am on January 3, 2011, Kay Day said…

Hi sleepycarol,

I suggest you go to the RLS Foundation home page at www.rls.org, click on Medical & Scientific Info, and click on Publications & Brochures. You can download as many of the publications as you'd like. After you've read the literature, et me know if you have more questions.

 

Sorry it has taken me so long to reply. We moved into our house the day before Thanksgiving, and then Christmas and New Year's came along.

 

And if this is a repeat reply, my apologies. I haven't learned how to track my communications on Sleepguide.

 

Hope to hear from you soon,

 

Kay

At 1:57am on December 31, 2010, carol hamburg said…

THIS IS THE FIRST TIME I AM GOING THROUGH THE SITE.IT IS GREAT NO OTHER WORDS CAN BE SAID.

I AM 67 AND HAVE BEEN ON  A CPAP  FOR MANY YEARS CAN'T REMEMBER.I STOPPED USING IT BECAUSE OF THE MASK,BUT ALLEN (MY WORKER FROM THE STORE I GET EVERYTHING FROM) BROUGHT A MASK IT IS ONLY ON MY NOSE,THE ONLY PROBLEM DAVID (MY HUSBAND OF 13 YEARS} AND I ARE HAVING IS THE TUBE COMES OUT OF THE MACHINE AND I'M ASLEEP SO I DIDN'T KNOW IT.WHEN IT IS WORKING,I'M ALSEEP BUT DAVID GETS UP AT 1;30AM FOR WORK AND CHECKS ON ME WHEN HE LEAVES AT 3:40AM  AND CALLS ME WHEN HE OPENS THE SHOP.WHEN I DON'T HAVE THE CPAP ON I USE THE REGULAR CANNAEL ON MY FACE AND TAPE IT ON.THAT TOO HAS COME OFF IF I DON'T PUT THE TAPE ON THE RIGHT PLACE OF MY FACE

  BUT AFTER LOOKING THROUGH THIS SITE WHICH IS ENOUGH TO KEEP ME BUSY  FOR A FEW WEEKS OF CONSTANT LOOKING.

  HOPE OUR STORMS ARE GONE SOON I WANT TO START DRIVING SOON,I DON'T DO TOO MUCH DRIVING IN THE SNOW WITH MY TRUCK.

  LIKE I SAID I WISH  I KNEW OF THIS SITE YEARS AGO.

I'M GOING TO GO TO SLEEP NOW BUT AS I SAID IN THE BEGINING THANKS SLEEP GUIDE YOUR GREAT

MAMAJO  (CAROL) MAMAJOLYLYNN2@YAHOO.COM.

At 11:18pm on December 19, 2010, Donald Lutes said…

      Hi Carol, thanks for welcoming me to the gang. I am married to a C-Pap user, my husband Don started having symptoms in '98 or '99. I would come to bed after reading a book, and he would be snoring so loud, I couldn't go to sleep. So I layed there and listened, he would actually stop breathing, and I would have to shake him awake to take a breath. I hadn't heard of sleep apthnea before, but I knew something was wrong. His doctor had him take the sleeping test, and they said he had it. Then we moved to Fl right after that, and he forgot about bringing it up with our new doctor. We moved back to Ill. after 2 yrs,missing kids, and he had the test over, this time after he took a stress test, and failed it. He had to have 4 way by-pass surgery in '05, and I wonder if he had been on a C-pap before that, if he would have not had to have surgery? Probably tho. He uses the large mask and humiderfier in the winter. So far he does good with it, sometimes not, and takes naps alot. I really just want to read about everyones take on the disease. He did have back surgery lately, and the anesithologist wrote a letter saying we should warn the next doctor about the trouble she had getting the tubes in his throat. Would that be because of the extra flab in his throat? Will he need that throat surgery at sometime? And is there some point in time he would need oxygen, he was a smoker for 30 yrs, but stopped the day he had heart surgery, soon 6 yrs ago? Maybe you know some answers for us, or can send us to a specialist in our area, that would be great info. Hope everyone in the group has a Merry Christmas and Happy New Year! Sue L.

At 3:00am on December 19, 2010, Kevin Hill said…

Carol,  Thanks for the Welcome.  As a Registered Respriatory Therapist and a user for some 6 years I am pretty familiar with the processes of PAP therapy, but always need to learn more.  I am just recently under the care of an excellent Sleep Medicine Doc locally - She has "upgraded" my therapy, retested me with a new sleep study and I have felt better than ever. I seem to be somewhat complex and involved, but who isn't?  Got some mild Complex Central Apnea w/ RL and some sensitivity of BiLevel pressure changes.......

At 9:15pm on November 26, 2010, Sandra Ceslowitz said…
Thanks, I'm finding the groups you suggested helpful.
At 4:05pm on November 26, 2010, Dave Drake said…
SC,
I used to sign that way back when my kids were small ... even though I have been using a CPAP for 16+ years, I still consider myself a newcomer. I'll explain mose fully with a post to the whole group ...
Thx for the welcome and even though I not very verbose ... I'll try to communicate often cause I feel I have a lot to offer ... if not vent . Hehehehe
Papaducke
At 10:15pm on November 13, 2010, ken sherbett said…
thanks for the warm welcome, I have been on a cpap/bi pal since about 2000. nice to read some coments
At 9:30pm on November 8, 2010, Mary Callahan said…
Thanks for the warm welcome. I am definitely new to sleep apnea just being diagnosed last month. I have not been for my titration study just yet, as I am terrified at using those masks. They look like torture devices to me. I am totally panicked at the thought of having to use them. Besides going to the support group in Manhattan, I also went to the support group in Long Island. They were both very good meetings. I work in Manhattan and live in Long Island.

I will slowly make my way around this I am sure since surgery does not seem like a likely solution for me. I have read too many horror stories about people losing their ability to swallow and talk. Not to mention the severe pain while getting over the surgery. But I guess time will tell if I will ever be able to allow myself to put a mask on my face. I know people say it just takes time, but I am talking about some basic deep down fear. Probably comes from when I was 5 and had to have my tonsils out. I can still remember them putting the mask on my face when they used the ether to knock me out. I am still cringing.

Well thanks again for the warm welcome!
At 4:20am on November 5, 2010, Bill Pilgrim said…
Hi there Carol, Thanks for the nice welcome. I am afraid I am an old hand now. I have complex apnea and was upgraded to a VPAP Adapt almost a year ago, when I finally convinced the doctors that I felt I was constantly suffocating with CPAP. It took over 6 or 7 years to convince them. Some certainly have tunnel vision and just do not listen. I am wondering if there are others with my problems. I seldom sleep for more than 2 or 3 hours without waking even with the VPAP and I remain constantly tired to the point where it is starting to worry me about driving. Even though I am almost 76 I can still drive well for hundreds of miles/ kms. I want to take a few months and drive around Australia, but would love to be more alert. I really would likew ideas about why I do not sleep well now.
Regards Bill
At 1:00pm on November 4, 2010, Kay Day said…
Hi Carol,

From your description of your leg movements, it appears to me that you may have restless legs syndrome and/or periodic limb movements.

I suggest you go to the RLS web site at www.rls.org, click on Medical & Scientific Information, Publications & Brochures, then print Restless Legs Syndrome: Causes, Diagnosis and Treatment, RLS Fact Sheet, RLS Patient Sleep Diary, RLS Triggers, Coping Methods for RLS, and RLS Mimics. Or click on Support Groups, click on MO, then click on Central Missouri Support Group. You can get in touch with Kathy Page, and she might be able to send these brochures to you.

I suggest you complete the RLS Patient Sleep Diary. It helps you a lot in understanding your sleep patterns. Your husband should also make his comments about how many times a night he is aware of your leg movements.

If you have questions after reading the literature, you can call Kathy or contact me here.

For immediate action, cut down gradually on your caffeine intake, go to bed at the same time every night, don't take naps, and don't eat for 3 hours prior to bedtime. Most antihistamines aggravate RLS, so if you're taking one, check the information sheet that comes with it. You can go to www.rlshelp.org for a list of medications that aggravate RLS. Also go to www.wemove.org and read the information on RLS.

I hope this helps. Let me know if the literature helps, too.
At 12:41pm on November 2, 2010, Ryan G said…
Thanks for the invite.

I recently had some communication with Mike, who I found through the sleepguide.com facebook page, and I told him that we sometimes write articles on sleep and sleep apnea. I shared with him a couple of these articles and he suggested I post them on the forums.
At 10:03am on November 1, 2010, Kay Day said…
Kathy Page is my friend. She is on the Board of Directors of the Restless Legs Foundation. It's too bad the sleep study didn't identify your leg movements. They can interfere with sleep almost as much as apneas do. I can understand your not wanting to go on another medication. There are changes in life style that can make a huge difference. Let me know if you're interested. I won't be offended if you're not.
At 6:31pm on October 31, 2010, Kay Day said…
Hi sleepycarol,

Thanks for the welcome. I've been on CPAP for 10 years, at least 20 different masks, and now a chin strap. I'm currently using the SleepWeaver mask, and I think this is the one I'll stay with. Getting a new chin strap Monday which should work better than my current one.

I'm an RLS support group leader, so if anyone has questions, they can ask me. I also teach the Arthritis Foundation Exercise Program -- and I especially like to tell people how much it has improved my life.

Thanks again for the intro.

kayiniowa

P.S. Just noted you live in Sedalia, Missouri. We just moved from Linn, Missouri, to Keokuk, Iowa. Do you know my RLS friend Kathy in Smithton?
At 1:15pm on September 25, 2010, Bill L. said…
Thanks sleepycarol. I am still catching up on all of the reading so as not to be too redundant in my postings later. I am amazed at the wealth of knowledge posted here.

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