sleepycarol

Female

Sedalia, MO

United States

Profile Information:

My Interest in Sleep Apnea: I have Sleep Apnea
Treatment Being Used, if any: Auto-Adjusting CPAP
If Machine Being Used, What Type? (e.g., Respironics M Series with A-Flex Auto-Adjusting CPAP): Respironics M series with C-flex Auto-Adjusting Cpap with integrated humidifier

Also own a Resmed S8 Vantage with intergrated humidifier

Fisher and Paykel HC100 stand-alone humidifer base with water chamber
Fisher and Paykel HC150 stand-alone humidifer base with water chamber

Encore Pro 1.8 for monitoring therapy
Pressure set at 9 -15
Started therapy on August 30, 2007
If Mask Being Used, What Type? (e.g., ResMed Activa Nasal Mask): Headrest/Aura; F & P 431;

Comment Wall:

Load Previous Comments

breck hayden

Hi Sleepy Carol, my problem is i can not get the hose off the humidifer and the nasal mask can you give me some ideas

Jun 26, 2010
Kath Hope www.hope2Sleep.co.uk

Hi Sleepy Carol from Sleepy Kath lol! I'm in the UK and it's nearly 2 am so as a sleep apnea sufferer and helper, I should know better! It's been a really busy and stressful day here, but I didn't want to go to bed without thanking you for your welcome - it means a lot! I emailed Mike last night explaining that I joined this forum as I felt very strongly to post what I did. However, I pointed out to Mike that I do also run a business in the UK which provides sleep apnoea (UK spelling) comfort accessories which I import from you great lot in the states to help people here (where there are no such things) to get comfortable treatment to enable them to comply with their CPAP treatment. I didn't want anyone on here to think that was here to tout for business, as that's not my style (plus the fact, most of you on here from the states can get the comfort accessories at your end of the world anyway). I also provide information, help and support to the UK sufferers, and most of my knowledge has come from you great lot in the states, as the UK are many years behind the US. If you are interested, you can view my website at www.hope2sleep.co.uk and Mike has given me his blessing to be on here - knowing that I'm here and gaining extra knowledge (I'm sure) to pass on to the UK sufferers. I'm also on Twitter, which is where I found Mike.
Sorry for the long reply, but I truly wanted to thank you (and Mike) for the warm welcome.
Best get to bed now and practise what I preach lol.
Kath x
ps Changed my name to Kath@Hope2Sleep

Jul 13, 2010
John Kemp

Thanks for the welcome! I've only been on the site for an hour or so and learned a lot. Looking forward to sharing more information!
John

Jul 29, 2010
David Starobin

Thanks, Carol, for the kind welcome. It's like the old days when there was a Welcome Wagon. I remember ladies coming to the house when we first moved in (I'm talking half a century ago!) and welcoming us to the neighborhood with a basket of goodies and coupons.

I guess it's not that way anymore, but here on the Forum you and a few thoughtful others are my Welcome Wagon.

Especially helpful is you guidance on the newusers forum and FAQs. I'm new here, but not a new apnea sufferer. I've been using a BIPAP for 5 years or so.

I need to start advocating for myself, learning what's new and better, what to expect from the doctor and equipment provider - and this seems the place to start doing it.

Thanks again for your kind message.

Jul 30, 2010
Todd Last

Thank you Carol!

Aug 3, 2010
Sharon Gleason

Hi Carol,

I'm not on this site much so I apologize for the late reply!!

thanks for the tips and assistance I really appreciate it!!

Aug 8, 2010
Kenneth Dean McKnight

Thanks Carol. I'm a respiratory therapist based at a hospital but working on contract to an affiliated DME down the street. The sleep lab and pulmonary/ doc are my major referral sources for O2, PAP therapies, and overnight oximetry. We also get referrals from Giesinger Health System here in PA(I'm near Scranton). I have had diagnosed and CPAP treated OSAHS since spring of 2001 so i have dealt with or at least seen a lot of stuff dealing with other people and myself trying to get a good night's sleep. I look forward to becoming more involved in this valuable resource.

Aug 24, 2010
B N R Child

Thank you. I'm brand new to the apnea world. Just got my machine this past week and have many questions.
Bryce

Aug 30, 2010
Winn Sammons

Thank you. I have already found valuable information. I, too, am new to the world of sleep apnea. I received my CPAP unit and nasal "pillows?" about a week ago. So far, things seem to be going fine. Have there been any discussions on the forum about the post-surgical dangers of OSA? I represent doctors and hospitals in medical malpractice actions, and have for some time been forming a strong concern that many of the post-surgical respiratory arrests relate to undiagnosed or undisclosed OSA. Winn

Aug 31, 2010
Rev Aaron Fielder

Thank you for the welcome. Although I don't know much about "apnea" it is probably more because the VA Hospital I had worked with when I first contracted was trying to deny responsibility for all of the other things that were going wrong with me at the time, because of suspected "Agent Orange" exposure and other toxins where I was stationed for three years in the Army. It is one of those "the EPA says they did, the military says they didn't" situations! Haven't got it all sorted out, even yet after 35 years! Don't really have many questions...at least until I complained about the machine I was using drying me out (a difference in climate from Reno to Western Arizona). Now it seems that all I am dealing with is just trying to learn the new adjustments and how to get a mask that fits the way I am used to after the one I had broke (cheap Chinese plastic!) Thank you for being there to question and get answers from...The VA guys in Phoenix don't really seem to know much about the equipment except how to replace it when it doesn't work right...this is my third machine!

Sep 19, 2010
Chris H

Hi sleepyCarol Thanks for the intro. Been on cpap about year and a half 5 masks heated humidifier chi-san pad later here I am Glad To find you peeps.

Sep 20, 2010
Pat Kniel

Thanks for the welcome. I know I am late but that doesn't mean that I didn't appreciate it.
Pat K

Sep 21, 2010
Rette Tyrrel

Morning,

Appreciate the welcome.
Have had my CPAP for almost 5 years and must use it every night. My question is, I'm out of the country right now and am on 220 electricity. My humidifier does not work (I wake up in the middle of the night feeling like I'm in the desert, have to drink and go back on it. Can't be good for my lungs), yet works perfectly on 110. This is the 2nd machine. The first one did the same thing and was exchanged for that reason. Anybody have any ideas? Thanks.
Rette

Sep 25, 2010
Bill L.

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.

Sep 25, 2010
Kay Day

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?

Oct 31, 2010
Kay Day

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.

Nov 1, 2010
Ryan G

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.

Nov 2, 2010
Kay Day

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.

Nov 4, 2010
Bill Pilgrim

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

Nov 5, 2010
Mary Callahan

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!

Nov 8, 2010
ken sherbett

thanks for the warm welcome, I have been on a cpap/bi pal since about 2000. nice to read some coments

Nov 13, 2010
Dave Drake

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

Nov 26, 2010
Sandra Ceslowitz

Thanks, I'm finding the groups you suggested helpful.

Nov 26, 2010
Kevin Hill

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.......

Dec 19, 2010
Donald Lutes

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.

Dec 19, 2010
carol hamburg

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.

Dec 31, 2010
Kay Day

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

Jan 3, 2011
Tom Cannon

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

Best, Tom

Jan 7, 2011
Adi

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

Cheers,
Adi

Feb 2, 2011
Fred

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

Feb 5, 2011
Sheryl J. Runyon

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

Feb 5, 2011
Lycinda Richardson

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 :)

Feb 6, 2011
Donna Medin

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.

Feb 6, 2011
Sheryl J. Runyon

I used the Sleep Weaver again last night,and I am really liking it. It broke seal twice,probably because I am not that familiar with it yet. My other masks have broke seal up to 6 or 7 times a night,so this mask has been great. All I had to do to get to seal was to lift the mask off my face a little and let it drop back down. Piece of cake!
I have bought several masks from directhomemedical.com They have a pretty good policy. I think they have the Sleep Weaver right now for $100.00 and for an additional $30.00 they will let you return their masks and get something else if it doesn't work for you. I have always found them very good to deal with,and their delivery time is good also. If I hadn't been required to get mine through a provider in my area with a therapist on staff I would have ordered my equipment from them, but insurance wanted me to do it the other way or they would not pay.
I will keep you up to date on how the Sleep Weaver is working. If it still works well after the first washing,I will be sold. The material is so light weight the only thing you feel is slight pressure from the straps.

Feb 6, 2011
Nancy Roach

Thanks for the welcome, Carol. Today marks two weeks that I have had my CPAP machine. I was diagnosed with severe sleep apnea at the end of December. I have been very lucky and my treatment has gone well from the beginning. I know that it might not always be like that but I am very thankful that it has gone well so far. Thanks again.

Nancy

Feb 8, 2011
Chris H

Hi Carol, I am glad we are in the same life boat. Did you find any if the allergy testing helpfull or just painful and expensive? Good Sleep,Chris

Feb 9, 2011
domenica

Thanks you....:-)

Feb 9, 2011
Gerald Donoghue

Sleepycarol,

Thank you for the kind welcome. I am sorry I didn't respond earlier. This forum has provided a wealth of information. Unfortunately, I signed up here and on another forum at about the same time. The other one seemed great at first, but I found it became increasingy acerbic with some posters being out right cruel. It became the Jerry Springer show online. I was reluctant to return there or here, but decided there is too much value here to ignore it. Thanks again!

Feb 11, 2011
Lori D

The hose with the machine sometimes gets loud--I guess it is the water from the humidifier on it. Would you have any suggestions on that?

Feb 20, 2011
Pam Keyt

Thanks for the nice welcome!

Feb 21, 2011
Madison

Thanks sleepycarol. I have tried to post comments, but keep seeing them disappear into the ether. the contibutions by you and others on the forum have been so helpful. in the rare moments i have to check internet at home, i look forward to visiting the website. melanie

Feb 26, 2011
Lori D

Thanks for the info!

Feb 27, 2011
Russell Macmillan

Thank you..glad to be a member!

Mar 2, 2011
George Sibley

Thank you.

Mar 3, 2011
Patty Tucker

Thank you. Hope to be of service.

Mar 9, 2011
Anthony Rainey

Thank you for you welcoming note.

Mar 9, 2011
judy a

Thank you for the nice welcome, it's so nice to know I'm not alone in my "battle" with the illness and machine.

Mar 12, 2011
Glen

Thanks Carol for the welcome. I am yet to start using a CPAP machine but am here doing my homework in the meantime.

Mar 14, 2011
Jazz Angel

Thank you for the welcoming note. I'm very new to all of this. Looking forward to learning a lot.

Apr 2, 2011
Karl Grissom

Thank you for the welcome. I just starting using the CPAP and had some concerns about the adjustment period and what others were dealing with and came to find this forum.

Apr 2, 2011