Sleep Apnea Circle's topics - tribe.net

A day late...

2010-01-03T07:52:17Z

Hello Tribe!
Hope you all had a good holiday (even if only relatively) - its been quite a hectic last quarter of 2009 for me - had to travel much more than usual and not for pleasure or vacations (to see a sick friend).

It seems that for many of us this was a tough year - and for some on of the toughest ever. Scotty - glad you are hanging in there.

Nevertheless, I have finally finished my New Years Video - its an edit of two timelapses (one of the moon and one of the sun) I took during the transition into the new year and during the afternoon of New Years Day. For me, shooting time lapse sequences has been very therapeutic for me - so much I started a channel on YouTube with just my timelapse sequences. Here is the link to my New Years Day timelapse video greeting:

http://www.youtube.com/watch?v=VWTnSeuh4I0

Happy New Year, good people of the Sleep Apnea Circle. May you be happier in 2010.
MC

posted in Sleep Apnea Circle - 0 replies

Scotty Larue....

2009-12-16T19:50:12Z

This is to let..all our Tribe friends know..that Scotty Larue has had a stroke

and he is in the hospital..

this is the message I received from his wife Carol..

Scott had a stroke yesterday and is still hospitalized..They did some big tests today and are very concerned about the blockages in his carotid arteries, especially the right side..They will perform an ultra sound tomorrow to determine if surgery to clear the blockage is an emergency..The stroke yesterday affected the left side of his body, maybe it was an early warning, but he is weak and has numbness in his face..

he has asked that I let his tribe friends know.. If I get an address ...for him..to send a card..I will let you all know..

lets keep him in our healing thoughts and prayers..we know what a hard time he has had..

Get Well..Scotty Larue!

posted in Sleep Apnea Circle - 7 replies

Not so much about apnea but...

2009-12-15T16:57:01Z

My doc told me about a week and a half ago that she thinks I am done with treatment for the thyroid cancer for now. "...doesn't need any more RAI at this time...".
Its great news and about as close to "free and clear" as it is going to get. I was partying quite a bit leading up to the holiday. Last night was pretty mad. I'm paying today but had to end the last ten days accordingly. :)

Thanks to all of you for giving me some great support during my diagnosis, surgery and recovery.

Sincerely,
MC

posted in Sleep Apnea Circle - 6 replies

NASAL CANNULA TREATMENT FOR SLEEP APNEA

2009-10-17T05:00:50Z

I have not been able to adjust to using a CPAP all night. The nasal pillows, which are supposed to be the most comfortable mask option, are too uncomfortable for me. I've been wondering why CPAP suppliers do not use the same devices used in medical situations to deliver oxygen. I finally looked it up, and found out the name of the device: nasal cannula. It looks like studies have been done using these with apnea patients ( http://www.bio-medicine.org/medicine-news/Nasal-Cannula-Treatment-for-Sleep-Apnea-Patients-23257-1/ ), and the studies look promising. Does anybody have any knowledge of or experience with using a nasal cannula for treatment of sleep apnea? Does anybody know about these studies and have any idea whether or how long it would take for this to become an approved device for the tx of sleep apnea?

Thanks in advance.

posted in Sleep Apnea Circle - 5 replies

I'm Back....!!!! Scottylarue

2009-09-25T10:17:12Z

well what a journey the last week. It started with me sleeping almost 24 hours then waking up with left side numb... Every time I tried to speak I kept on biting my tongue... Every thing had gone off the charts 240/190 bp, heart rate 110 bpm, blood sugar almost 500!!!! PVC's like crazy and of course Tri-gmts' and Bi-gmt's (messed up heart beats)...

Two days ago they decided to put a stint in my Carotid Artery on my right side... They do this without sedation, numbing only the groin.... I had to hold on to a couple of rubber balls that I had to squeeze as the Doctor was digging in the Artery... I had to move my neck and head as he asked to help him guide the tools through to my neck... I am allergic to the dye they use so I sent into shock, Anaphylactic shock, couldn't breath then I went blank... Suddenly I was awake again and I realized I had I had dropped the ball in my left had... I said out loud I dropped the ball and I heard from the Anesthetist "Yes you really did, Your heart stopped and before we could "Paddle you" it started back up again."

So now I am home, with almost complete recovery... Just a little numbness on the left side, and a very sore and swollen neck... Yes you do feel them going from the groin to the neck... Not for the squeamish....

I do still get very tired and then the symptoms come back a bit more.... So I am going to post this on a couple of my Tribes, later I will talk more if asked... I have been feeling very good for almost a year so maybe I will get a good turn out of this....

posted in Sleep Apnea Circle - 14 replies

the Healing Power of Touch...

2009-08-15T13:50:57Z

http://www.care2.com/greenliving/the-healing-power-of-touch.html

posted in Sleep Apnea Circle - 0 replies

Changes in Sleep Habits/Patterns

2009-06-24T12:29:17Z

Hey y'all,

For about the last year or so, when I go to bed it takes me at least an hour to fall asleep. This is a change from my lifelong habit (no pun intended) of falling to sleep quickly. Sometimes I can go for hours. Also, after a recent illness, I've developed the ability to stay up all night (ability isn't the right word, I just can't go to sleep) and crash later in the day. Here's my question:

For those of you who have been diagnosed longer than me (I'm about 5 years in), have you noticed similar patterns? Are there any older (I know, ouch) women on the tribe who have had an experience like this while going through menopause? I'm wondering if these things might NOT be related other than they are both happening to me.

Just wondering. I don't have any older female relatives to ask, so, as usual, I'm relying on you all (guys included, but not about the menopause thing - I'm pretty sure just reading the question is creeping you out!!!). Thanks.

posted in Sleep Apnea Circle - 4 replies

and where oh where is..our..Scotty Larue?

2009-06-12T22:57:56Z

I have noticed him missing as of late

Scotty..give us a shout..if you should appear!

posted in Sleep Apnea Circle - 4 replies

Updates!

2009-05-26T03:00:13Z

Hey all,

It's been a little quiet in the Circle lately - so speak up.

MC, how's your post treatment recovery going? Lee, post surgery? Scotty - now that you have a face full o'air? All y'all, quit living your life and get in here and catch me up. Thaaaaaaaannks.....

posted in Sleep Apnea Circle - 22 replies

Scotty Larue~

2009-04-03T11:15:29Z

what is the next step in your progress of sorting this out?

have you done a sleep study yet?

oh fun..!!!

plugs and wires and sticky stuff!

posted in Sleep Apnea Circle - 31 replies

Home Monitoring..for Sleep Apnea!

2009-04-02T23:50:59Z

check this out..

http://www.johnshopkinshealthalerts.com/reports/lung_disorders/2966-1.html?ET=johnshopkins:e17135:475806a:&st=email&st=email&s=RLH_090402_005

posted in Sleep Apnea Circle - 0 replies

LOL!!!!

2009-03-30T16:56:03Z

Here is a hysterically true story to add to the "joys" of CPAP use while travelling:

I have just returned from an 8-day medieval re-enactment camping trip called SCA Estrella War XXV. Yes, my trusty CPAP and battery back-up system went with me and worked like a charm.

Every day, one of my hale and hearty knights would carry my very heavy Lifeline battery & charger up to Chiurgeon Point (medieval first-aid station) to be recharged for my night's use. On Saturday night the little traveling cart my battery sits on to keep it off the ground couldn't be found. As my entire encampment was sitting around the fire enjoying themselves, my Baron stands up and in a loud voice proclaims "Has anyone seen Leah's cart for her PAP SMEAR MACHINE?" I'm not kidding!!!!!!! That's what he said!! The entire group looked with the either raucous laughter brought on by the ingestion of alcohol or looks of total shock and then laughter! The Baron looks at me and says "What? What do you call that thing?" After I stopped laughing, which took a while, I just looked at him and said, "Well, it's not called THAT!"

Yes, my cart was found and my battery put into my tent for that night's use but the story of Leah and her "pap smear machine" will now go down in Kingdom history.

Huzzah!

posted in Sleep Apnea Circle - 5 replies

ok..folks...

2009-03-11T15:39:56Z

here is another problem that affects people with sleep apnea

I just got out of the hospital..and have been diagnosed with pulmonary hypertension..

which From what I can tell..(this is new to me) fluid buildup around the heart..

not allowing enough oxygen to get into the lungs...

and thus..making me not able to get a full breath..

have been having a hard time breathing of late..

has anyone else been affected by this..?

posted in Sleep Apnea Circle - 5 replies

Hella newbie...

2009-02-26T23:31:40Z

I don't know much about tribe.net but I'm looking for resourses for my boyfriends sleep apnea. We don't have health insurance currently but it's getting worse and we recently lost a friend to this so it's become worrisome. Are the over the counter products we possibly don't know about? Anything would be helpful...

posted in Sleep Apnea Circle - 1 reply

Hey MC

2009-02-21T03:27:20Z

how..ya doing these days?

posted in Sleep Apnea Circle - 6 replies

Could this all be from lack of sleep?

2009-02-11T03:23:06Z

You guys have been so supportive and helpful that I thought I would turn to you once again for your advice.

I am often scared that something is seriously wrong with me. I am constantly exhausted, and at times am overwhelmed with it. Sometimes I collapse on my couch after work -- even after just a four hour shift, and lie there breathing heavily for 2+ hours. All I can do is feel my breathing and my heartbeat. I can't sleep, nor can I do any useful thinking. My mind drifts, and I feel as if I am dying. Of course, I have no idea what it feels like to be dying, but when it's all I can do to lie completely still, when breathing takes up all my energy and is all I can concentrate on; I worry.

I used to hike up a mountain about once a year. About 5 or 6 years ago, I suddenly could not do it without stopping and resting and catching my breath every few minutes. It was dramatically different than what I was used to my body being able to do. There was no reason for it that I could think of, except that I'd passed the age of 40.

My mental faculties have disintegrated greatly. My ability to concentrate, remember things, use judgment, problem solve, or just plain think has been greatly reduced. I can barely function at work, and when I am home, I am too tired to do the physical tasks, and unable to do the mental tasks that I would like to do. I am way behind in my correspondence with friends, because I sometimes cannot complete an email. I have always been a writer, and I have a constant flow of ideas and lots of material to work from, but I do not have the mental energy to write. I write one or two sentences, and then am exhausted.

This is all very scary and sad to me. I have a very strong urge to create, and I used to be a talented writer. Now it can take me several minutes to think of a common word that I cannot recall. To write just one page is overwhelming - and something I haven't done in years. [I can write a post like this because it doesn't take any creative energy, I just write what I'm thinking, and spend a lot of time editing afterwards.]

Can this all be due to the fact that for years I have only been sleeping 3-4 hours per night, interrupted by apneas? I used to be able to sleep five hours, 5 or 6 years ago. I've had a lifetime of insomnia, and sleep has just been dwindling over the years.

Another factor I wonder about is that I take the generic form of Klonopin. I only take 2 mg. per night, to help me fall back asleep with my frequent awakenings. I wonder sometimes if it is the klonopin that makes me so overwhelmingly tired. Yet that would not explain the decline in mental functioning.

My physician's assistant assumes that my chronic fatigue is due to my sleep problems. I guess because I've had sleep problems my entire life, and yet have NEVER felt this tired until recently, and in my earlier years was able to function fairly well - I often feel as if there must be something more serious going on that we don't know about.

Since you all have at least one sleep disorder, I wonder if you can tell me if what I described is common with long-term sleep disorders.

Thanks so much.

posted in Sleep Apnea Circle - 11 replies

Good news!

2009-01-28T23:55:16Z

My C-PAP is coming! My C-PAP is coming!

I got a call this morning. When I told them I couldn't get out to their office in Foster City, they told me they will set up a home visit and to expect a call in a few days.

After getting only 3-4 hours sleep this morning - after being awake for two straight days - this is welcome news. I don't know if it will help me to stay asleep, or stop the heart-pounding I often wake up to, but I am hopeful. At least it is a first step. If C-PAP doesn't work, then there are a number of surgeries that I could have on my jaw, nose, and some of the soft tissue.

It has been a looong wait! I've had problems sleeping my whole life, have had 3-4 sleep studies, and finally the one I had last October that proved beyond a shadow of a doubt that I have obstructive sleep apnea severe enough to require treatment (and there have been several complications that have delayed my getting it). Two years ago, I had been turned down for a C-PAP because my sleep report was off by one digit to qualify for a C-PAP with my HMO. My new sleep doctor thought it was ridiculous that I was denied. All this time, I had no idea I was so close... my last sleep doctor, imo, sucked.

posted in Sleep Apnea Circle - 10 replies

What is your feeling towards Sleep? Do you enjoy it?

2009-01-07T01:27:17Z

Do you enjoy sleeping? I used to love it…in fact, I looked forward to it.
Now, I hate it. I feel like OSA has taken the pleasure out of it.

posted in Sleep Apnea Circle - 12 replies

Happy X-mas and a wonderful Holidays

2008-12-27T04:36:15Z

I hope your week is filled with wonder, enjoyment and child-like fun!!!

Lee

posted in Sleep Apnea Circle - 3 replies

I made it through the surgery

2008-12-19T20:26:47Z

Hi all,
My surgery is over and I have been released from the Mayo today. My wife and I will be heading back to Orlando tomorrow. We are stay in Jacksonville over night. I will write over the weekend. Thanks for all your support.

Lee

posted in Sleep Apnea Circle - 15 replies

To each his or her own...

2008-12-01T15:36:37Z

...but Happy Thanksgiving - whatever that represents to you.

I will be very busy so I am posting this early! Thanks for being there when I need you all!

MC

posted in Sleep Apnea Circle - 4 replies

Mayo Update

2008-11-12T15:23:19Z

I have had my 3rd of 6 visits before I have my operation. They have restricted me to 2000 calories and I am required to keep a detailed food and medical journal (blood sugar, BP/pulse, hours slept). 2000 calories did not seem a lot at first…I can stuff it away, but most of the time, I don’t think about eating. I have found it difficult to eat the full 2000 calories everyday. Sometime, I just don’t get around eating either breakfast or lunch and I don’t snack. Yet, I am still over 150 lbs over weight.

On the strange and happier side of things, I had my metabolic rate tested and the results were that I burn 3000 calories at rest. Now, my wife and I were the only ones that thought that seemed awful high. A professional athlete burns between 5000-6000 calories. So, if I do nothing and I consume less then 3000 calories, I should lose weight.

Since last month and on most days, I had roughly 2000 calories, but I only lost 5 lbs. The Registered Dietician did not think that was unusual or she thought I lied in my journal. So, when I go back up this month, I am going to ask to be retested.

It just unlikely that it would be that high when I have been so inactive for the past 3 years. I have been struggling all my life with my weight. Even when I was my most active, it was hard for me to lose or keep the weight.

posted in Sleep Apnea Circle - 22 replies

Posting

2008-11-10T03:36:31Z

Is anyone else been having problems posting or sending messages. It seems to take 3 or 4 tries before it takes.

This post took 6 tries

posted in Sleep Apnea Circle - 3 replies

Was hesitating to bring this up but...

2008-11-08T02:09:08Z

...I've been told sharing with a community I like is a good thing.

So...

I was diagnosed on Tuesday with thyroid cancer. But the prognosis is very good. It seems that I have the most common form and, amongst cancers, this type of thyroid cancer is one of the most survivable with excellent 10-30 year outlook. Even with common local metastatis, and the very rare distant metastasis, the prognosis still remains very good. I fall on the earlier half of mass size so I am currently in the 90-95% percentile for 30 year survival.

All those thyroid concerns you heard me express in an earlier thread culminated in a biopsy and the diagnosis.

Good things about all of this:

1. If I am a typical case, no chemo or aggresive radiation therapy is required. Typical treatment after surgery is to take a few cycles of radioactive iodine which specifically target only thyroid cells - wherever they may have ended up. So, beyond my surgery to remove my thyroid, I will only feel less than normal on the days I take my iodine pill at the beginning of each cycle (one pill per cycle). Sometimes, there is 24-48 hours of some nausea and fatigue but then things work out. I have to sequester myself for the first two days of each cycle anyway so I don't radiate anyone - esp kids and expectant mothers. For most, the surgery is the most traumatic.

2. Very few people actually die from this form of thyroid cancer. A friend of the family who is the head of pathology at a hospital in Los Angeles, and having been a pathologist for 45 years, says he personally has not seen a single patient with this form die from it. This isn't to presume no one does but the good prognosis is supported here.

3. I've decided to go ova/lactic veggie (the right way) to support my immune and recovery. Regardless of approach or philosophy, while there is disagreement on how meat may or may not contribute to cancer, most schools of thought seem to agree avoiding red meats and saturated fats is very good for recovery. I know myself well enough to know I need to go all the way or I will not go anywhere in the end. I already avoid diary for the most part as I don't tolerate dairy too well anyway and I already use only egg whites or egg beaters. So, just cutting out the meat.

4. The mass is actually making my trachea deviate - so, while it will not cure my apnea, it is likely it will improve and, at least, give me more comfortable positions to sleep with after recovery from surgery.

Honestly, I am sharing not because I expect any specific type of response but because this community seems to understand chronic illness more than most I am in. So, I thought I would share.

You may shower me with words of encouragement now - I promise I will soak it all in. :)
MC

posted in Sleep Apnea Circle - 16 replies

Destrubing Sleep

2008-11-08T00:29:09Z

The other night, I fell asleep in my chair...I guess it was a very deep sleep...I remember waking to my choking, but i could not lift my head in order to breath. Has this ever happen to any of you? I have never experienced the sensation of being paralyzed before. It was quite scary.

posted in Sleep Apnea Circle - 1 reply

So, What's Up, Chuck?

2008-09-20T03:20:25Z

mc, how you doon, man? You've been on my mind so much but I've been having real issues getting online (connectivity issues, but finally figured out a patch for now). How are things going? You have the surgery? Treatment? How you doon, man?

As fer the rest of ye, I wouldn't mind hearing how you all are and are getting alone with stuff, so please give a post. You guys mean a lot to me, and I really do care how you are...

D.

posted in Sleep Apnea Circle - 2 replies

waking up with heart pounding

2008-08-27T07:01:32Z

I sometimes wake up with my heart pounding so fast and so hard that it worries me. It usually takes about an hour before my heart rate returns to normal.

Could this be a side effect of sleep apnea? When this happens, I don't feel anxious or recall any bad dreams. I don't recall any feelings or dreams of suffocation. It's the pounding of my heart that makes me anxious.

I don't have a C-Pap, but was diagnosed with mild obstructive sleep apnea. The study showed that I had frequent awakenings that were all breathing-related. I only got 5.5 hours of sleep at the time of my last study, but this past year I normally wake up after 3 or 4 hours. My oxygen levels weren't low enough for my insurance to qualify me for a C-PAP, but I'm going to try again with another sleep study. I am exhausted more days than not, and fall asleep frequently at inappropriate times.

Thanks for your help.

posted in Sleep Apnea Circle - 3 replies

Noisy machine

2008-08-25T17:24:09Z

Last night I was awakened by the sound of my REMstar Plus. At first I thought the mask required adjustment but when that didn't work, I had to really wake up and see if I could do anything about my machine wheezing as if it were suffering from asthma. The light on the dial was blinking. I don't know if that signifies a malfunction or if the light was just fixing to burn out. Maybe an electric fluctuation caused both phenomena.

I'm going to look for the manual to see if there is anything I can or ought to do. If not, I'll need to go to Providence Home Health on Tuesday. I've been using it for a couple of years and had it inspected last winter. Could this be a sign of (the machine's) old age? Anyone else have a similar problem?

posted in Sleep Apnea Circle - 3 replies

Electricity!!!!

2008-08-11T17:12:59Z

I finally did it! I got POWER! Got your attention, didn't I????

Since my OSA diagnosis in June 2006, I've been fortunate enough to have a friend within my medieval re-enactment group who co-owned a portable generator with his father. He'd be able to borrow it for the events we were both attending and if he didn't have it, there was power available that I could plug my battery charger into to recharge my Lifeline battery. That is, until this upcoming medieval camping event August 7-10, 2008. He was not able to borrow the generator and the site for the event, while I'm told is very lovely and has tall trees, is totally unimproved and has NO electrical power for medical equipment, or any equipment. I was going to rent a portable generator for the 4 days but it was such a hassle and the cost was at least $130.00. A member of my group found a portable generator she thought would meet my needs and sent me the info online. I ordered it and it should be here tomorrow! My hubby will help me figure out how to use it and now I will not be at the mercy of someone else's generator availability. For $182.00 I've bought my own!

I'll let you know how it works out when I get back from Highland's War.

Love,
Leah

posted in Sleep Apnea Circle - 6 replies

ResMed Mirage Swift II

2008-08-11T06:43:56Z

Hey all, I ended up with a with an extra Mirage Swift II mask. I have two of these masks already and both are in prefect working condition. This has been the best mask that I have used to date.

I don't need a third mask, but I do need the money. If anyone needs a new mask or knows someone and their insurance company won't pay for it, I am willing to sell it at a much discounted price.

The mask is still factory sealed and comes with the case, DVD, instructions, headgear, and 3 nasel pillow sizes.
Just let me know.

posted in Sleep Apnea Circle - 3 replies

Difficulties Falling Asleep

2008-07-16T15:41:06Z

I've been having problems falling asleep for the last month or so. Once I'm asleep I'm fine and sleep the rest of the night but it is taking me almost 2 hours to actually fall asleep. Is anyone else experiencing this? It's frustrating!

posted in Sleep Apnea Circle - 8 replies

Obesity and HIgh Fructose Corn Syrup

2008-07-06T16:10:15Z

I have been doing some reading..I am not sure if I posted this here before but I think it's important enough to let everyone know what they have found about this.

High fructose corn syrup which is added into beverages, ketchup, cereals, BBQ sauce, some yogurt, Fat Free salad dressings etc has been found to seriously mess with appetite hormones and insulin resistance. Also, in rats it was found to raise cholesterol levels.

Even Weight Watchers treats have HFCS in some of them. I found that if it says Organic, it cannot contain HFCS so that's what I am buying now. And Fat Free unflavored (Plain) yogurt is best and then add in whatever you want. The low fat has HFCS in it.

There are studies by the Amer Journal of Clinical Nutrition..

here's a link to one of them

http://www.ajcn.org/cgi/content/full/79/4/537

There's a movement to get this out of foods, just as they are getting transfats out of foods. I hope they suceed. In the meantime we can take care of ourselves and our kids.

Pam

posted in Sleep Apnea Circle - 4 replies

I got seven hours last night...

2008-07-02T01:23:00Z

...minus waking up once or twice.

How did it happen? And how can I repeat this? I feel so alert it was almost irritating.
MC

posted in Sleep Apnea Circle - 5 replies

Moist Hoses?

2008-06-11T17:13:06Z

I know...The topic sounds kinda exciting huh? Calm down folks..it isn't all that exciting. Yanno I bought some of those fleece covers for my CPAP hoses to insulate them so I wouldn't get so much Rain-Out. But, Yanno those hoses don't dry out completely between uses. I have two that I hang over my bedroom door and swap them out so they have a chance to dry out. I pulled the insulation off of one last night after a droplet worked it's way out and noticed they were both still wet inside....even the one that had been used the night before last.

I admit that I don't wash my hoses every single morning.. When I do they don't dry out by next use either.

It can't be good to have hoses that never dry out completely. What do you all do to dry your hoses thoroughly between uses..this is for the folks with humidifiers..of course.

I have a second CPAP that a friend gave to me so now I am starting to hook up my hoses to that to blow dry them between uses. I don't want any fungus or mold growing in there.

Thanks
Pam

posted in Sleep Apnea Circle - 14 replies

Pure Sleep product- I'm using it

2008-05-19T18:02:50Z

So about a month ago I saw a commercial for product called Pure Sleep. It's a mouthpiece one wears at night to push the lower jaw slightly forward with the intent of eliminating snoring. I've been using it for about a week now with pretty good results (and not using the cpap).

A few observations:
1. It's a little on the thick side (because the front of it has opening) which makes it hard to keep my mouth shut during the night, so I wake up with a dry mouth.
2. I have a crooked bottom front tooth and the mouthpiece puts some pressure on it, making it kind of sore in the morning.

But other than that, for $60ish it seems to work! My partner says that I don't snore using it, and I feel fine in the mornings. I'm happy to have another option besides the cpap now- especially when traveling.

Is anyone else using this product?

posted in Sleep Apnea Circle - 3 replies

Anyone here dealign with thyroid issues?

2008-05-19T06:40:21Z

I would like to ask a few questions - if even privately. Thanks.
MC

posted in Sleep Apnea Circle - 15 replies

Apologies and a question...

2008-05-11T07:28:07Z

Hello everyone...
Firstly - I have been very preoccupied lately - suddenly lost 2/3 of my income in a month and trying to regroup. Can't say I am terribly busy but most definitely distracted. I have been rather absentee here so sorry to all - especially our newer members. But I am glad this community is still here.

Secondly - I have a vague sort of question:
Given we are all more or less on BiPap/CPap therapy...how do you generally feel? For me, I can say while I feel immensely better using the therapy than not, at the same time I am definitely not close to "normal" as I am happy if I get more than 5 hours. So, I am still rather tired much of the time although the nodding off only comes when I have skipped the therapy (which usually happens when I fall asleep in my studio before I get to my pre-sleep routine).

Sort of a vague question, I know. But just wanting to see how the rest of you fare having been diagnosed and on therapy now.

Peace.
MC

posted in Sleep Apnea Circle - 3 replies

Crapped Out!!!

2008-05-09T04:35:33Z

Hey all,

Night before last, I was going to bed and my BiPAP was DEAD! No light, nothing. It wouldn't turn on, and I have gone the past two days without my constant companion. It's been a little scary. I will call my doc first thing in the morning b/c I do not have the first clue about what to do - do I get it fixed? Where? I don't use the same DME anymore. Do I get a new one? My doc said once that if you get a new machine you have to do another sleep study and I would SO rather not. The last one was about 3 years ago and I just now have gotten all the glue out of my hair from it (jk). I looked and there is no reset button.

Anybody have this happen? Any suggestions?

posted in Sleep Apnea Circle - 17 replies

Daytime sleepiness

2008-04-08T00:24:33Z

HI everyone,

Well, after a couple of years of wearing my CPAP most nights I have lately just been feeling soooooo sleepy during the day. I could easily fall asleep just sitting at work or at a stop light. I just feel so sleepy lately. I am thinking maybe my apnea has gotten worse and maybe I am obstructing at night and I don't know it. ( I sleep alone so I wouldn't notice)...either that or I am just getting old.

I really hate the thought of going through another sleep study. I swear I only slept an hour at the last one. It must have been enough because they said I had moderate apnea.

Does anyone else still feel really sleepy during the day even while using their CPAP? I work a lot but I suppose I could take naps a couple of days a week on the rare days that I am home.

Thanks in advance for listening,

Pam

posted in Sleep Apnea Circle - 6 replies

Lesson learned: Wear your cpap

2008-03-28T05:17:35Z

I've been trying hard to wear my mask throughout the whole night. Like many folks, at some point during the night I end up pulling it off (I have the nasal pillows) but must be wearing it long enough that I generally feel good the next day. Well on Monday night I was too tired to put it on (read: Lazy) and on Tuesday night I was too tired and didn't wear it either.

I woke up very early Wednesday morning because I wasn't breathing. I remember opening my eyes and taking a deep breath and feeling my heart pounding. I knew what woke me up but didn't want to alarm my partner, so I just rolled over and went back to sleep. When I finally did get out of bed I was exhausted and, more troubling, had heart palpitations all day. I've had them before here and there, but not all day.

Finally at 5:30 I was worried enough that I took my self to the emergency room. I _thought_ I could just get someone to look at me, say 'yes' they were caused because I didn't wear my cpap and send m on my merry way. Well, of course traditional medicine isn't so simple.

They took me into emergency, took blood, took an EKG, then hooked me up to a monitor and there I lay for the next two hours. When the doctor finally came by she listed with a stethascope, asked a few simple questions about family history and then was gone. Another hour went by and my partner arrived. I filled him in and there we sat. After another while I sent him home to feed and walk the dog. When I finally noticed the doctor go by I asked her if there were any updated. She said she was waiting for the results from the blood test and urine test (which I never took) and she was going to order and EKG (which was done when I arrived).

Clearly she was overworked. If I hadn't had the catheter in my hand I probably would have left right then.

My partner came back and I told him not much had transpired. He went and found the doctor (who was doing paperwork) and she sent the nurse over who told me that they were still waiting for the results of the blood work and that the doctor would probably admit me. I didn't want to be admitted and the nurse said that the blood work would show if there was a minor heart attack by the presence of some enzymes and that they repeat this particular test three times over 12 hours.

I chose not to stay and signed the paperwork necessary to be released (since the lab results weren't back yet) .

Anyway, I wrote all this to say that I believe the palpitations are absolutely related to the apnea. Even last night, once I got home four and a half hours later, I still had them. But I put on that damn mask and made sure I wore it all night.

I feel good today- rested, and no palpitations. But it was a big eye opener and now more than ever I really believe that I hold the power to control this. Not only with the cpap but by taking care of myself though exercise and diet.

Note: I _just_ turned 40, I'm 6'1" and 172lbs. so I'm not the typical case of being overweight; however I'm not active. I work at my computer all day long and only move when I have to walk the dog.

So for those folks who are still struggling with the mask, as I am, do yourself a favor and just wear it. If that means waking up to put it back on, do it. Finding myself in the emergency room with the possibility of being admitted in hospital with a heart problem is really scary.

posted in Sleep Apnea Circle - 2 replies

How long will it take??? New CPAP user..needs advice/help.

2008-03-27T14:39:28Z

Hello everyone.

I'm new here, I've come here in search of some support and insite from those who've been in my shoe or are in my shoes.

I'm new to the Sleep Apnea world. Was diagnosed recently and last week got my CPAP machine, with the nasal pillows.

Well I've only slept one night all the way through with the mask on...only because I took an Ambien.

My issue is, I cannot sleep with the mask on and I don't understand why. I'm exhausted when I go to bed I put the mask on and after about 10 minutes I feel wide awake and cannot relax at all. I can't seem to keep the mask on any longer than about 2 to 2 1/2 hours before I take it off and then I fall asleep, but as you could probably guess wake up extremely exhausted because I dont' fall asleep until o'dark thirty and i'm not getting any substantial sleep.

I'm starting to lose hope here...I wanna hang in there but I'm so exhausted (even people at work are noticing).

Advice anyone? I feel alone (my fiance has no idea how to relate or help).

posted in Sleep Apnea Circle - 4 replies

Mirage Swift II Nasal Pillow System

2008-02-17T16:07:45Z

I have been on the Mirage Swift II Nasal Pillow System for over a week now. I really like this mask over the others that I have used. I have gotten use to the pressure going straight into my nose. Also, I cannot say it enough; what a simple pleasure it is to be able to itch your nose or have a drink of water without having to take off the mask in the middle of the night...ah, the simple things.

I feel like I am getting a better night’s sleep. I am not waking up to the noise made from my old mask or having to readjust it because it is leaking into my eye. The day time sleepiness has yet to go away, but I have high hopes. A couple of days ago, I slept through out the night without waking up once…well, I don’t remember waking up at all. I cannot remember the last time I slept that well. It was a wonderful thing. Plus, I did feel much more alert the next morning. I am hoping to have more nights like that.

My only negative comment I have about this mask is that the hose attaches to the side of the nasal pillow rather than in the middle, like most of the other masks. If you sleep on your back or on one side, it is no big deal. The hose will attach to either side of the mask, but if you are like me, a tosser and tuner, the hose will get in the way, but not to the point of keeping awake. It is just a matter making space for it around your pillow.

This is a great mask.

posted in Sleep Apnea Circle - 1 reply

My sleep apnea has not gotten better

2008-02-16T02:01:42Z

I have a question for you all. Back in September of 2004, I was diagnosed with sleep apnea. I was amazed by the number of people who have it. At work, ( I worked for a very large aerospace engineer firm) people that I never met starting coming up to me, telling me my life was going to start changing: once you go on that cpap, your life will be like night and day.

I don’t want to sound like a downer, but my life never changed. The only thing that has changed are the suffocation and drowning nightmares are gone. Also, the night sweats are also gone. It’s those damn nightmares that keep me using my bipap. I don’t want those to come back.

However, the daytime fatigue is as bad as ever, if not worse. Despite the fact that my wife and I walk with our dogs just about everyday and we eat healthy, I continue to slowly gain weight. Which I know only makes this worse.

Since I continued to fall asleep at work, I had to go on long term disability. Which might sound great, after being home for a few weeks and you cannot drive yourself any where, pretty much sucks.

I started off on the cpap, went back for another sleep study and they put me on a bipap and max out the setting 20/18. Now my doctor has scheduled me with the Mayo Clinic for further sleep studies. I have been read a lot of these type groups to hope to find someone with a similar condition.

Have any of you had this problem where the chronic fatigue has not gone away?

posted in Sleep Apnea Circle - 10 replies

Doubt and diagnosis

2008-02-05T07:33:46Z

Granted I snore loudly, but I maybe wake once a night and usually wake rested in the morning. I'm doubting the diagnosis, because I think Kaiser is taking the cheap route all the way and I'd like to hear comments and advice.

They basically gave me a home testing device which checks oxygenation with a sensor taped to the finger. Based on this and the self-reported snoring (and high b.p.) they prescribed cpap. So I try this thing and it feels like reverse choking with cold air. (this is at the lowest pressure). Okay, they will provide a heated humidifier and give me a nose pillow option. But once the study period is done on this machine I will be allowed only a single level cheapo machine. Frankly, I doubt that I can tolerate even the 4 setting. It might be okay if it would come on after I'm asleep, though.

So, any opinions about diagnosis without a sleep lab?
Also, are their machines that wait for you to sleep or even wait until there is an obstruction?

Thanks

posted in Sleep Apnea Circle - 8 replies

Mojo Mask...

2008-02-01T22:54:50Z

...anyone use it? Curious.

http://www.cpapxchange.com/cpap-masks-bipap-masks/mojo-sleepmask-gel-full-face-cpap-mask-bipap.html?gclid=CL-L56LxkpECFRsFagodtTJpPQ

MC

posted in Sleep Apnea Circle - 7 replies

Here is something for the books of crazy cures

2008-01-25T19:34:01Z

I found this doing some research...I might give it a go, but I am sure where to find a Didgeridoo. :-P

http://www.cbsnews.com/stories/2008/01/24/earlyshow/health/main3747454.shtml

posted in Sleep Apnea Circle - 0 replies

Not so funny story, but sort of is.

2008-01-24T03:26:59Z

I own three very big Akitas: Logan, Lilly and Luther. Lilly is on my photo. She goes everywhere with me. She is almost 100lbs, Logan is the oldest and he about is about 165 lbs, and Luther is the youngest and weights in at about 170 lbs.

When we got Luther, he would sleep on his back. It really is the cutest thing. My wife and kids just ate it up. Anyway, now that he is full grown, he still sleeps that way, but he snores like a freight train and on occasion he chokes and wakes himself up. My dog has sleep apnea.

posted in Sleep Apnea Circle - 2 replies

Vertigo Anyone?

2008-01-24T03:18:25Z

Do any of you experience vertigo more than on rare occasions that you think might be related either to your apnea itself or stemming from apnea therapy?

Since my apnea was at its worst and I started complying more regularly with my BiPap regimen, I have experienced vertigo several times a year lasting as short as one day and as long as a 1-2 weeks.

Still trying to put my finger on it but it seems like the following could be factors:
- I sleep late in general (early am). Whenever I try to drastically change my sleep patterns (to sleep earlier) I tend to experience a bit of it.
- On some occasions, I feel like I have a bit of a head cold immediately preceding a vertigo spell
- I think I may have very mild, ongoing vertigo and it explodes now and then

I have also heard that many patients who use BiPap/CPap actually have a low grade sinus infection and do not know it because it is not obviously symptomatic. The explanation is that drier, forced air tends to dry out our sinuses and make them more susceptible to sinus infections. The sinus infections can affect the inner ear causing vertigo.

Anyway...vertigo is one of those things that can be hard to trace causes for unless an infection is readily apparent and can happen for reasons other than viral or bacterial. Oh well.

Anyone else experience anything like this?
MC

posted in Sleep Apnea Circle - 18 replies

What is your pressure? Do you use a CPAP or bi-PAP

2008-01-22T19:10:14Z

Just curious what others here use.

I'm at "14" on CPAC and as I said in a different post am being retested to up the pressure and use a bi-PAP.

What do you guys use?

posted in Sleep Apnea Circle - 11 replies

Weird!?!

2008-01-22T19:07:20Z

Yesterday I got an e-mail, out of the blue, from someone I didn't know who had read a comment from me on a news release from my sleep lab. I knew I was the "spokesperson" for that lab, but had NO idea someone would actually try and contact me about sleep apnea from reading that news release. Without going into detail, he found an e-mail contact for me online. He wanted my opinion on the sleep lab as he needs a sleep study done and wanted to know if I had any problems sleeping with a mask, etc. I did answer his questions and then let him know that I'd be happy to assist him AFTER he has completed his sleep study and told him I was proud of him for taking this first step.

I guess now I really am "officially" speaking out about sleep apnea. If it's alright with all of you on this tribe, I'd like to let him know about it. But I wanted to ask permission, especially of our moderator, MC, first.

Love,
Leah

posted in Sleep Apnea Circle - 21 replies

Can't wear the mask

2008-01-22T03:36:05Z

Even though I wore the darned thing for four whole hours on the sleepover test night, I have barely worn it since it came home with me. I know I have a really neat machine. That's not the problem and have a really neat, unobtrusive mask thingy with nothing strapped to my face or under my chin or nada like that, It is the smallest one you can get. I just cannot bring myself to use it..

I am pretty sure of why. Two reasons actually. One is that I am a night owl. I stay up quite late (early?) and by the time I hit the sack, I look at the thing and just say, "I'm too tired to mess with it". Of course, the underlying reason is deeper than that, really. I have had a lot of surgeries for bone cancer since I was a sweet young thing. The last decade or more, whenever I have had to go in for surgery, my aversion to anesthetic mask has been so anxiety producing that apparently I fight them off, even when I am out, or on my way out, I guess. So one of those wisdom anesthesiologists told me to ask to be put under by IV first before putting the mask on me. And I have done that ever since. But, I certainly cant do that for a CPAP issue!

Anyhow.... So, I figure this may have something to do with it. I have had my CPAP for about 4 months and have only put it on a few times, wore it for short periods trying to acclimate myself, and only one time fell asleep with it and tore it off with a feeling of dread. I think the air pressure had increased about that time. I called and asked if the air could be reduced, but the say it is the lowest it can go.

Haven't been able to make myself use it since.

I know I need to use it. I know I would feel a heck of a lot better, if I did. I really want to get over this.

Has anyone else had this much of a problem with it? Has anyone succeeded in overcoming this issue?

Thanks for any suggestions.

posted in Sleep Apnea Circle - 11 replies

Happy New Year...

2008-01-08T23:50:41Z

...beloved tribe!

Some had it hard - some had it soft. But its over and a new one begins. May your 2008 surpass your 2007 in every positive way.
Peace.
MC

posted in Sleep Apnea Circle - 1 reply

Braces and a CPAP

2008-01-06T16:47:09Z

Well, my dentist and my orthodontist have decided I don't look funny enough. They have decided that in my middle age I should get braces on my teeth. Top and bottom. I am getting white ceramic ones so they won't be sooo bad, I don't think. I asked my orthodontist how this would work with my CPAP. He said he had one other person who had one and that it should be a problem. One other person isn't much of a test.

I sure hope my mask doesn't hit where my braces are. I hear about braces kind of tearing up the inside of people's lips as it is without having the pressure of a CPAP mask. Anyone here wear braces with their CPAP? Do you use a nasal mask?
I have a comfort gel mask.

Thank all. I will let you know how it turns out. I get my new braces on Aug 13th. Until then I am looking for caramel apples and popcorn :)
Pam

posted in Sleep Apnea Circle - 8 replies

Happy Holidays...

2007-12-27T11:44:38Z

...to everyone on this tribe. Whatever your observance (or non-observance) might be, my wish is that everyone has a fine week. Thank you all for your openness and warm support - this tribe definitely has helped me feel more confident and affirmed about dealing with my apnea.

Sincerely,
MC

posted in Sleep Apnea Circle - 6 replies

NYT article on sleep and mattresses-

2007-11-18T00:31:40Z

see http://www.nytimes.com/2007/11/18/magazine/18sleep-t.html?_r=1&oref=slogin

posted in Sleep Apnea Circle - 0 replies

Piss Off

2007-11-03T12:47:23Z

No, that's not a command - that's what happened to me last night and I'm still a little hungover with it.

Last night, my husband suggests we get a piece of plexiglass to put down between us in bed so the "exhaust" from the BiPAP/mask doesn't blow on him. Grrrrr...like I have some choice about this damned contraption.

What do you people with partners do? Do you all have that kind of problem?

posted in Sleep Apnea Circle - 7 replies

New product made by a CPAP user-has anyone used it?

2007-10-27T22:38:19Z

Hi there, i also read the reviews of masks and machine at CPAP.com. They have a Talk Forum. Well I signed up for this newsletter and I am in Essential oils.

http://www.cpap.com/DisplayNewsletter/29?utm_source=newsletter&utm_medium=email&utm_campaign=pursleep2

Has anyone used this?

Thanks,
Lei!

posted in Sleep Apnea Circle - 4 replies

Face Time

2007-08-24T23:30:49Z

Yeah, I couldn't think of a catchy title.

Here's the deal. I just got a call from my DME provider (I SO hate those people), but this guy says that the way this particular mask is packaged they come in S, M, and Lg. Well, chances are I'm a M or a Lg (never been a small in my LIFE!), and I am willing/happy/more than willing to share my largesse with the class if this is true. In other words, like in English, if anyone wants one of these extra masks and I actually get to keep them at no additional cost, I'll be happy to send them on to you. I'm thinking this might be good for someone who wanted to try a full face mask but didn't want to go through all the BS.

Lemme know. I know it would require a certain amount of trust to give me an address, but do think about it. I hope this works out the way I think it will.

Darla

posted in Sleep Apnea Circle - 0 replies

First Night with CPAP~

2007-07-31T16:50:47Z

hi everyone- the last time I posted was back in May, when I had my sleep study done.
It was supposed to be a two part test, but because the tech got started late I had to go back to have the second part (w/ CPAP) done separately. But long story short, yesterday I got my CPAP.

It's the REMaster and I chose the "nasal pillow" that has the head strap (instead of using a full face mask).

A couple of comments my first morning after:
- The machine is a little louder than I'd like. I prefer complete silence in a pitch-black room for sleeping. I may use my earplugs.
- The blue "on" light is really bright! Again, I like it dark, so in the middle of the night I put something on top to block the light.

The nasal pillows aren't bad...I may try the small size tonight, as at one point, probably early this morning, I woke up and my nose felt a bit pinched.

However, my partner said that I didn't snore once, which is great. And while I don't feel like a completely new person (yet?) I will say that I do feel rested. I know it'll take a few days to get used to, but I'm really glad I got it.

My pressure is set to 90? 9? Not sure what the scale is (the dr. did a very POOR job and basically prescribed it without going into much detail, but that's a whole other posting). And this model also has the heater and water chamber.

posted in Sleep Apnea Circle - 4 replies

TNI..anyone heard of this technique?

2007-07-24T04:41:03Z

http://www.hospitalbuyer.com/medical-specialties/pulmonary/nasal-insufflation-minimizes-symptoms-of-sleep-apnea-1165/

posted in Sleep Apnea Circle - 1 reply

Carbon Monoxide

2007-07-05T04:18:24Z

Hi Guys and Gals and everyone in between!

I was thinking way back when I was first going to my doctors complaining of daily headaches that maybe I should check to be sure that my wall heater was working correctly. I installed a Carbon Monoxide Detector and all is well. I was noticing though that sleep distubances and headaches etc can be symptoms of long term carbon monoxide poisoning. Thought I would post it here in case anyone wanted to stick some detectors up in their house.

Detectors are cheap.

End of the Public Service Anouncement for today. Back to your regularly scheduled programing

Pam..who loves that this tribe exists so I don't feel like such a mosquito face

Here are some symptoms of Chronic Carbon Monoxide Poisoning I found on a website:

http://www.carbon-monoxide-poisoning.com/effects.html

Effects of Carbon Monoxide Poisoning
Carbon monoxide can poison or kill an individual with little warning. There are a number of symptoms that are indicators of possible carbon monoxide poisoning. These symptoms vary depending on the amount of exposure to the actual poison. Recently, studies have been performed to show that chronic carbon monoxide poisoning can result in long term, residual effects on our bodies.

One such study has been conducted by Dr. David G. Penney. He suggests that long periods of exposure to carbon monoxide, at low levels, can result in long-term effects. He calls this chronic carbon monoxide poisoning. This can cause effects in an individual for days, weeks, months, or even years. Results vary depending on the age and health of an individual.

For the purposes of Dr. Penney’s study, the term “chronic” is used to describe how long the carbon monoxide exposure lasts, not how long the resulting effects are.

Physical symptoms: headache, nausea, vomiting, muscle pain, joint pain, chronic fatigue, dizziness, numbness, tingling, vertigo
Cognitive / Memory Impairments: attention problems, multi-tasking problems, word-finding problems, short-term memory problems, verbal and/or visual deficits.
Affective Disorders (emotional/personality effects): irritability, anxiety, lack of motivation, temper, loss of interest, sleep disturbance.
Sensory and Motor Disorders: blurry vision, double vision, buzzing in the ears, decreased co-ordination, speaking, eating and swallowing disorders.
Gross Neurological Disorders: seizures, inability to speak, balance problems, tremors.

posted in Sleep Apnea Circle - 1 reply

sleep study results

2007-07-01T16:05:46Z

I got them this morning and they do not show any sleep apnea. I went right to sleep, slept for about 3 and 1/2 hours, and managed to make it to stage 3 sleep and then REM before I woke up. I fell asleep later but only got to stage 2 sleep.

So I guess I'll have to look elsewhere to understand why I'm not sleeping well. The doctor suggested that after I wake up from my first period of sleep, which seems to happen because I have to go to the bathroom, I am not falling back into deeper sleep and thus don't feel well rested. Looking at the sleep study results, that figures because my second period of sleep was not very deep.

It also answered my curiosity on one point. I take mirtazapine (Remeron) at bedtime and if it happens that I take a long time to fall asleep I begin to suffer from a restless leg, the left one, after about an hour. It's weird, I know, but it's just the one leg. I've wondered if it was happening in my sleep when I go to sleep quickly but apparently it isn't.

There's also something else that I wonder about. The graphs show that I slept on my left for the first long sleep period, then the left again for the second period of sleep, lay on my back for a short period of time then turned on my right until the end of the study. However, I didn't. For both sleep periods, I slept on my right side. I turned on my back when asked but I didn't stay there long because I was not comfortable so I slid back over to my right again. I was never on my left, unless I turned over during that first sleep period, but then I would have turned back to the right again because I woke on my right. And they say that I snored a little on my left but not on my right.

I suppose that the technician could have plugged the leads into the wrong place to account for the wrong side showing. Has anyone had this happen to them?

I don't know what I'll do now. I did suggest that I sleep somewhat better when I take a sleeping pill and thought that I might try using them more often (I know I can't use them all the time) and he didn't demur at the idea.

posted in Sleep Apnea Circle - 5 replies

Humidity

2007-06-19T14:44:29Z

I've noticed, esp. over the last year or two, that very high humidity at night (in any season, although I'm far enough north that it is much more a summer thing) can keep me very awake for most of the night, countering the good effects of my BiPAP (currently set on 8 and 11 for the past 2 years, using nasal pillows) in a big way. I'm writing this at work, on 2-1/2 hours of Benadryl-assisted (when 3:15am came and went) sleep, and it is far from a pleasant feeling.

Sometimes, if I set the humidifier to a medium-high/high setting (4 and above, on a 0-6 dial), I can eventually get unconscious - but that's not always the case.

I'm also about a month or so away from my next appointment with my sleep specialist, who I also intend to discuss this with. Any tips?

posted in Sleep Apnea Circle - 8 replies

sleep study last night

2007-06-15T05:57:51Z

From one point of view, everything went well. With the help of my anti-anxiety pill, I slept for about 3 hours right away, then I woke up and was trying to change sides when the technician came in about something or another so I decided to go to the bathroom, which I was going to need soon, After that I had trouble going asleep again because all the wires kept me from moving freely so I sneaked in another lorazepam and fall asleep for about another hour and was awakened by a loud noise and pretty soon the time was up.

In a sense it was an anti-climax and I didn't get an opportunity to display all my problems, especially those that occur late in my sleep. I haven't a clue what the results were. I hope it shows something! I asked the doctor at my consultation to send me the results at the same time that he sends them to my doctor and I thought that he agreed but we'll see. I want a chance to digest the results before I talk to the doctor next. That appointment is on June 26, 2 weeks from yesterday and I can hardly wait!

My blood pressure has become very erratic and 2 weeks ago I wore a 24-hour BP monitor for which I get the results tomorrow. And I think that will be very interesting.

Any way, I behaved my self and got through whatever was necessary.

posted in Sleep Apnea Circle - 4 replies

It's been a while since I last posted

2007-06-12T02:40:08Z

because I had nothing to say. At that time, I replied to Leah's post about camping with a CPAP and I was glad to see that you did get to go, Leah, and that everything worked out well.

I had a sleep study May '06 that I flunked, literally, because I had a panic attack and had to leave and then went on to have more panic attacks. Even after I got help for them, anxiety continued to be a low level problem for me and there was no way I was going to try another sleep study. Well, I'm still having problems and I'm fairly sure that I have at least mild sleep apnea and I've been more or less receptive to the idea of trying again but the problem was, where to go, since I would never go back to the original clinic. It didn't help that my husband was very ill and in the hospital this winter for almost 9 weeks; he had a compression fracture of the L1 vertebra compounded by 2 life-threatening infections, one of which was septicemia. I didn't know that anyone got septicemia any more!

Anyway, I have a sleep study booked for June 12 at a clinic that looks much better than the first one and I have talked to the doctor on my case and he seemed very sympathetic. I am still bothered by free-floating anxiety for which I may take lorazepam sublingually and was very happy to find that he would have no objection to my using it at the study, if necessary. That's good because I had fully intended to use it anyway.

Not too long ago, someone was complaining about members who never posted and I admit to that fault but I really had nothing to say. I'll post again after the study to tell you-all how it went. I'm not looking forward to it but I need to know what is going on because I'm not getting enough sleep and getting up and started in the morning has gotten very difficult. Just cross your fingers that I can pull it off without another panic attack.

posted in Sleep Apnea Circle - 10 replies

Hello and my story

2007-05-25T22:22:38Z

HI everyone. I have been on Tribe for a while and on other CPAP forums for a short time but decided to see if there was a Sleep Apnea Trobe here so I could have a place to chat with folks who had the same kinds of things going on that I do. I am happy to have found you all here:)
I am Pam and I live in the SF east bay and was diagnosed with Sleep Apnea just in the past year. In retrospect I must have had it for years and years. I slept through Phantom of the Opera twice...snoring away to the dismay of the people in the seats next to me in the theater. When I had a motor vehicle accident on my way to work at a hospital, I ended up having surgery there that day. I woke up after surgery complaining of pain in my jaw instead of my surgical site. Turns out the anesthesiologist spent about an hour as I dozed off and on in the recovery room trying to keep me from obstructing so I would get enough oxygen.
I went to my doctor complaining of a headache that had lasted for several months without any relief. Finally, I asked for a sleep study which showed moderate sleep apnea. A Holter monitor measured my heart rate as high as 180 at night and my blood pressure would rise too.

I got my CPAP machine..yay! I don't obstruct anymore when I wear it. I get a nice facial steam so that's always a plus! My headaches are less and my blood pressure is coming down.

I do have a couple of issues about it which I feel so petty complaining about since I am so grateful for it. But maybe all of you experienced ones can suggest some things?

#1 I work in SF proper three days a week and sleep there. I take BART and Muni and walk several blocks to get there. I already carry my clothes for the weekend and I can't really haul my CPAP into work too for the weekend. Does insurance pay for a second one? If not, is it possible just to purchase a second one from my DME provider?

#2 The velcro on the headband pops open and the little ball and socket thingies go flying. It is almost impossible to find those in the middle of the night. Is there a better system?

#3 I learned all about rainout and have done all I can. I have the machine very low to the ground. I have bought the hose insulation. I bought an extra hose to give the first one time to dry out. I have turned the humidifier down. I still get rainout sometimes. I have heard of the Aussie hoses. Do any of you use them, like them?

Thanks in advance and good to see everyone here

Pam

posted in Sleep Apnea Circle - 13 replies

Are you "out" about your OSA?

2007-05-18T16:08:35Z

Is this info you share with folks on a regular basis? I am a private person by nature and don't tend to talk a lot about personal stuff (yeah, I know, it's hard to believe!), and feel very self-conscious about talking about it. How about you? Do you share it? Does it embarrass you? Make you feel less than?

posted in Sleep Apnea Circle - 5 replies

Sleep Study Last Night

2007-05-14T20:07:49Z

I was schedule to have my sleep study done on May 2, but the sleep center called yesterday to say they had an opening, so I went. I had a sleep study done about 9 years ago, so I was somewhat familiar with how it's conducted.

Anyway, they were hoping to do a two-part test whereby I would use the cpap for the second half of the night, but unfortunately that didn't happen as the attendent said I didn't have enough episodes before 1 a.m.

Well, I have to say I was a little miffed, only because I don't have great insurance so I had to pay for the study myself ($652). And while I was sleep at 10:30 p.m. and drifting off, the attendent wasn't able to get me hooked up until 11. So after that was done and I got back into bed I wasn't really tired anymore.....so I read for a little while then shut off the light, but ended up lying there for what felt like an hour before I drifted off.

I also felt like I woke up about 4-5 times during the night and didn't really feel exhausted or tired either (whereas the night before at home I was enervated and snoring by 10:30).

But this morning the attendent did say I snored a lot and that I do have apena (which I knew). I just wish I would have had the opportunity to use the cpap.

I was also surprised that this attendent was really pusing the surgery. When I told her that I had a study done years back she asked if I had lost a lot of weight, which I hadn't (I'm 6'1" and ~173lbs and have been for a long time- but never overweight). She would say things like with the cpap that I would have to carry it around when I traveled and that I'll have to wear it for the rest of my life and i'm young and should consider the surgery.

But the surgery is why I never did anything the first time- I know it's a difficult surgery and any surgery with anesthesia can be risky.....

Anyway....the results will be sent to the doctor in about ten days, so we'll see what he says.
I guess I"m just a little disappointed that I didn't get use the cpap and a little afraid of the surgery option....

I'll post again after I get the doctor's report.......

posted in Sleep Apnea Circle - 7 replies

yoooooooooo hooooooo

2007-05-02T11:04:32Z

everyone must be sleeping well

itssssssss been so quiet around here...

me been not doing well.... 4th round of this super bronchial flu that has been going around

this round has been 3 weeks..and really couldn't use my cpap..cause..I couldn't breath..with congestion of both chest and sinus

back on the past few nights....UGH....

sooooooooooooo..sick of being sick.....I Need some sunshine...and dryness I think

hope everyone else is doing well!

hugsss Heron

posted in Sleep Apnea Circle - 10 replies

New Tribe - Gmo's and the Future of Food

2007-04-11T22:15:34Z

tribes.tribe.net/gmo

I decided to start a new tribe...

this topic is one of the largest facing us...today..

if you are interested ...please give me a yodel...

will love to have ya..and we can share our knowledge and caring about this subject

posted in Sleep Apnea Circle - 0 replies

Second sleep test tonight

2007-04-02T17:28:39Z

first post here...

I have no clue how long I have had sleep apnea, but I had my first sleep test back in December and was put on a CPAP machine in January.

Sleeping with the mask and hose wasn't too tough to get used to, but it just seemed not to make a big difference for me. So many people with apnea tell me that using the machine was like night and day for them. For me it was more like night and evening.

So, the doctor wants me re-tested and on a bi-PAP machine. He figures they will increase pressure and the CPAP at a higher pressure would be difficult.

Wish me luck.

posted in Sleep Apnea Circle - 2 replies

How to deal?

2007-03-28T14:24:54Z

Well first off i dont have apnea. My fiance does have OSA. He hasnt seen a Dr. about it since he was 16 he is now 26. In april it will be two years since he was in a car accident where he fell asleep at the wheel and drove into a ditch and into a telephone poll at 50 miles an hour. Life flight had to come get him, he spent 6 months in a coma, 6 months after that in a wheel chair because they had to put his pelvis back together with titanium, and about a year of physical therapy.

So now he works about 50 hours a week and within 5 minutes of being home he is asleep. He falls aleep whenever he sits down. Falls asleep when he drives for more than 10 minutes. We cant even talk anymore because he will fall asleep in the middle of a conversation.

I get no sleep at night because im waking up everytime i hear him choking. I go check on him when hes napping and i cant hear him snoaring. Im having to drive him everywhere because im afraid of him crashing again. When he does drive i hold my breath until he pulls in the drive way.

In august we had the talk about kids. He told me he cant wait to be a father and would love to have children with me. I had to be honest, I told him that if i wanted to be a single parent i wouldnt be getting married. He didnt understand what i meant. It really hurt him to know that i wouldnt be able to leave kids with him because he would fall asleep and something might happen. And that i would get no help from him raising them.

So after that talk he promised me that he would go do another sleep study and talk to his Dr. Its now almost april and he still hasnt gone. Everytime i bring it up he freaks out and says im pushing him. I cant help but feel that its not worth it to him to be a little scared and uncomfortable to have a life with me.....like im not worth the effort or something.

So my question is....how do you deal with your apnea?
Is there anyone else who has a partner that has it but they dont themselves?
How do you handle being responsible for everything even though its suppost to be equal...because of there apnea
Handling the lost sleep at night every night?
The feelings of being helpless because you cant help there apnea?
And the main one....How do i bring up the fact of him seeing a Dr. without him feeling like im pushing it on him?\

Any and all comments and answers will help. Thanks a bunch everyone for letting me rant about this.

posted in Sleep Apnea Circle - 9 replies

On the road to recovery...

2007-03-27T14:55:37Z

I had a sleep study done almost ten years ago confirming that I have sleep apnea. I never did anything about it at the time as the dr. recommended that I get my tonsils out- not an easy operation for an adult. So I did nothing....
I've been in a relationship for almost 4 yrs now and my partner keeps telling me about how I snore, and stop breathing, and gasp...etc, etc.
So I finally went back to the dr.'s (a different one) and he's scheduling another sleep study for me. I guess things can change after ten years so he needs more recent results. But I basically told him flat out that I wanted the cpap as a friend of ours just got one and is singing its praises.
My sleep study is scheduled for May 3 :-) Apparently this time it's a two stage study-where if they have enough evidence of apnea they'll wake me and then use the cpap for the second half of the study.

It's been very encouraging to read everyone's posts here so I really can't wait- to wake up refreshed? I can't imagine.....
more to come.........

posted in Sleep Apnea Circle - 5 replies

Energy Breath

2007-03-21T20:25:32Z

http://people.tribe.net/e07dd220-cb56-4a35-b2c7-6bfe252645ea/blog/07febed1-eedb-43d5-b00c-248a58895113

posted in Sleep Apnea Circle - 0 replies

Knock Knock...

2007-03-21T20:21:46Z

anyone home..

how you folks doing...?

been pretty quiet around here!

posted in Sleep Apnea Circle - 8 replies

Just wanna let you folks know..

2007-03-17T17:04:16Z

that when you sleep with that CPAP machine..is sure sucks you into lala land..

It hazs been working much better..and man oh man..been sleeping deep..

its like you are in your own..little astrophysical bubble~

posted in Sleep Apnea Circle - 3 replies

Karyl..

2007-03-14T17:49:18Z

how are you making out..

any progresssssssssssssssss to report?

posted in Sleep Apnea Circle - 8 replies

Drymouth situation..

2007-03-12T21:32:54Z

well folks my doc gave me a good idea..last night and tried..it

heating the water up before I put it in my heater... it helped...

and I just bought a hose cover..sooooooooooo..lets see if this helps

plus soon we will be out of winter..and my bedroom will be warmer..think that will help too..

tonight is like freakin 9 degrees out there..frig.. but next week..SPRING WARMING will be here and they said we should get up into the 60's

I hope they ain't a lying to me~

AM SO READY FOR SPRINGGGGGGGGGGGGGGGGGGGGGGGG~ been really cold for way to long..this winter..

it took its time settling in ..but once it did... WHOOOOOOOOOHOOOOOOOOOOOO

posted in Sleep Apnea Circle - 5 replies

Leg Pain and/or "Restless Legs"

2007-03-12T21:29:44Z

Does anyone have experience with leg and/or foot pain and cramping when trying to get to sleep?

I don't know if what I'm experiencing is what doctors call "Restless Legs Syndrome". About 3 nights a week I get some of the most horrible cramping of the muscles in my calves or feet while trying to fall asleep. If I've been especially active during that day and on my feet alot, that night is HORRIBLE when it comes to trying to fall asleep. I'll get cozy, my CPAP humming, and then the legs or feet start cramping and hurting and I can't move or straighten them to "undo" the cramp; its agony! It doesn't happen every night, but often enough to be a bother. I know there is a prescription drug for "restless legs" but frankly I'm "drugged out". I take enough perscription meds as it is for my allergies, asthma, etc. I don't want another "drug".

Are leg & foot problems while trying to sleep common for OSA patients? Anyone found a way to cope with it? Some days are much better than others and some days the cramping doesn't happen at all. But on the days it does...HELP!

posted in Sleep Apnea Circle - 3 replies

Sleeping Update

2007-03-12T19:27:52Z

well I think I am making progress!

heating the water before I put it in my heater..is a good situation..it helps alot

I bought myself a hose cover..anddddddddddd

I put a teeshirt over the water area..to keep the warmth in there..

and voila..think it is helping the moisture problem..quite alot..

think I made it thru ..4 nights this week.. and till 4 one night..and one night..I ripped the thing off at 2:30

sooooooooooooooooooooo..progress..whooooooooohooooooooo

posted in Sleep Apnea Circle - 8 replies

new to cpap -- discouraged

2007-03-12T16:13:01Z

Tonight will be two weeks with the new CPAP. I am on my third mask already and not doing well with it. I started this thinking it would help me sleep better, feel better and I am giving it all I've got, but growing discouraged. Please give me some advice or hope that the CPAP can work for me?
thanks
karyl

posted in Sleep Apnea Circle - 10 replies

How Many Times a Night..do you guys wake up?

2007-03-12T15:38:11Z

between lady room runs..and twistin and turning cause my body hurts so much

and now my mouth so dry..needing to swallow..

and having to concienciously wake up to be able to change positions because I have that hose attached to my face..

I am lookin at about 15 a night now... FRIGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGG

posted in Sleep Apnea Circle - 21 replies

Cpapman website

2007-03-08T02:16:45Z

http://www.cpapman.com/auto.html#anchor388266

not sure if you folks know of this website...my doc told me about it

posted in Sleep Apnea Circle - 1 reply

Sleep Awareness Month

2007-03-07T16:55:50Z

Hi all!

Did you know that March is "Sleep Awareness Month" and that March 8th is National Sleep Awareness Day?

And how do I know this little tidbit of info? My doctor has been named the director of a group of sleep labs in the state of Arizona and has asked ME to be his official spokesperson on sleep disorders and the effectiveness of CPAP therapy! When I met with him for a follow-up appointment earlier this month he told me that he considered my response to CPAP therapy to be nothing less than miraculous and he wanted me to be his spokesperson, if I agreed of course. I really felt quite humbled and honored both at the same time. I agreed because I would like to help others realize that a diagnosis of obstructive sleep apnea is NOT the end of the world; that there is help!

In 1997 I was diagnosed with breast cancer and I vowed that if I could help just one person through the devastation that is "C" and give them hope than that was what I was going to do. Two years after my treatment ended I became part of a unique vocal group completely conprised of breast cancer survivors, the first in the USA, to record music of hope and inspiration. We did concerts and were featured on several Arizona TV news shows. We even sang the National Anthem for the Phoenix Coyotes Hockey team and for the Phoenix Mercury WNBA! Now I have the chance to bring sleep awareness into the public eye.

Last week I was interviewed by a company in Seattle, WA who is handling the publicity for the Sleep Awareness campaign for the State of Arizona and the press release is being sent out March 1, 2007. The publicity director is hoping that the Arizona news and print media will pick up on the story and interview me for a feature on living with obstructive sleep apnea.

I just wanted to let you know that this tribe has helped me learn to live with OSA and CPAP and now I hope to be able to give back to the community at large what you have given to me.

With much love and gratitude,
Leah

posted in Sleep Apnea Circle - 23 replies

Sleep Apnea Circle..

2007-03-07T16:47:08Z

ya know... I was thinking about our name..

and how much "i believe in the circle..

that for me is the foundation of friendship..

and this the foundation of life also

thanx for the circle.. it goes..round and round~

posted in Sleep Apnea Circle - 7 replies

WOW..Didg's..helpppppppppppp..Apnea!

2007-03-07T07:19:19Z

http://www.laoutback.com/didgeridoo/education/Didgeridoo_and_Sleep_Apnea.html

oh and how I love the Didg....hard as hell to figure out how to play the thing..

but want a gorgeous earthy..sound..

found that lil link on the sidebar of our apnea..thread

posted in Sleep Apnea Circle - 2 replies

here is a great article..

2007-01-31T14:02:38Z

from a very dear friends..magazine.. Spirit of Change..

thought you folks may enjoy it.. http://www.spiritofchange.org/articles_archive.php?id=217

am still struggling with that darn mask..and breathing machine.. still dry mouth..hate it..

seeing the doc at the end of feb..hope she can sort this out a bit ..

hope all are well..its been pretty quiet around here... cheers for now.. ~Heron~

posted in Sleep Apnea Circle - 0 replies

a lil nose pillow advice needed~

2007-01-13T14:22:31Z

well folks..I tried last night..

made it about 2 hours..but had one choking event in the middle of that

and the second one I decided to take off mask for night

seems my mouth gets really dried out and I start choking..now maybe my mouth opens when I am asleep..

any suggestions?

will try again tonight~

posted in Sleep Apnea Circle - 16 replies

Still sick..

2007-01-13T01:15:31Z

haven't had a chance to plug into the monster...as of yet..

got some antibiotics..yesterday..sooooooo..hopefully in a few days.

but ..I have started and asthma tribe..

not sure if any of you have asthma..

if so..please come on over..and share your stories and ideas

my main goal is to have a place..where we can share our stories..and what has worked for us..and what didn't

http://tribes.tribe.net/asthmaclearbreathing

I am hoping my CPAP machine..will help my breathing..and from what all of you have said it will...

will let ya know..when I finally get to plug into..my dragon!

posted in Sleep Apnea Circle - 7 replies

HAPPY HOLIDAYS!!!

2006-12-23T19:21:02Z

To everyone here, thank you for a community where I do not have to explain what I endure with this madness of apnea.

I have been blessed by your wealth of support, candidness and the unspoken empathy that is hard to find. For whatever it means to each of you, I wish you only peace, health and many good things this holiday season and for the new year.

Sincerely,
Mike Chung

posted in Sleep Apnea Circle - 3 replies

Bust Up!

2006-12-16T21:05:45Z

How much glue, you ask, CAN a person put on a mask before it loses its effectiveness? I don't know, but I am working on the solution!

I called my DME and they told me that I had to get a new supplier because my insurance changed and they don't do HMOs. I was furious - not so much that I was dismissed (rather rudely) but that I had called them two weeks prior and asked. They were going to check into it and call me right back...GRrrrrrrrr. They were very interested in working with me when they could make a bunch of money off me, but wouldn't give me the courtesy of a call back once they found out that I had an HMO. Rats.

posted in Sleep Apnea Circle - 5 replies

Its ARRIVED!

2006-12-12T19:25:11Z

the Dragon has arrived..

it will be a warm steam breathin dragon..with nose pillows attached to it..

tonight my adventure begins..

the tech fit me for the nose pillows..and I think I will like those..much more than that mask

makes me to freakin claustiphobic...and NEED TO SLEEP ON MY SIDE

will let ya know ..tomrrow..how I survived my first night..dreamin with the dragon~

posted in Sleep Apnea Circle - 4 replies

Newbie ...just got my diagnosis..on sat..YIKESSSSSSSSsss

2006-12-04T04:58:46Z

I am kinda freaked out..by the thought of trying to use this mask over my nose...

i am a side sleeper..and could not deal with that mask...at all ...during the test

anddddddddddddd...I have chemical sensitivities...due to Fibro

AND I was getting nasal congestion from the plastic in the mask

and having a hard time with the pressure it was putting on my face...with the fibro ..
i have a very hard time with constant pressure on any part of my body...even the bridge of my nose is bothered by many reading glasses..depending on how they sit on my nose...
UGH

haven't gotten my machine as of yet..

but was wondering about the nose pillow..someone told me..that that agrivated the side of their nose..where the hose I guess is plugged in...think the pressure from that ..bothered her...

soooooooo..need a lil advice on what to order when the tech calls me...

am honestly a little freaked by this..

and not a freaked personality....but this one is...gettin me!

posted in Sleep Apnea Circle - 8 replies

Congestion??

2006-12-03T14:46:21Z

I know that being fairly new to this group I have probably not seen the past posts on this. Thought that I would bring it up again for me and others now that winter and cold season is coming. I was wondering what type of things people are doing to fight congestion. Anytime I am a little bit congested I feel like I am suffocating when I get the CPAP mask on. Any advice people can give would be greatly appreciated.

posted in Sleep Apnea Circle - 13 replies

Not-so-cheap CHEAP-ass masks

2006-11-27T14:20:55Z

Does anyone else struggle with the quality (or lack therof) their masks? I have a full mask that is cheap as cheap can be. The plastic is really poor and after a certain time, breaks. I have less good benefits than I had previously, and when I asked how much the mask would cost if I bought it outright was told $225!!!! I'm floored. I recognize that it's a piece of very well engineered, if not solidly built, work but damn - that's too rich for my blood. I've made my mask at least work with my hot glue gun (!) for now. Pretty scarey.

What do you all think?

posted in Sleep Apnea Circle - 3 replies

Frustration!

2006-10-10T01:52:50Z

Are there any members of this tribe who are also members of the SCA or are non-members who attend "war" events? How do you deal with your need to use a CPAP while camping?

I have attempted to send an e-mail to the powers that be for both the upcoming Southern Crusades in November and the Estrella War in February 2007. The Estrella War website specifically states that there are no electrical recharging stations for personal medical devices. What's a SCAdian to do? I love my SCA experiences and don't want to stop; but I need my CPAP at night.

Any suggestions? I'm feeling more than a little frustrated at the moment.

Thanks for your help,
Leah

posted in Sleep Apnea Circle - 1 reply

anxiety

2006-09-07T03:36:54Z

I began to experience periods of anxiety last March quite out of the blue. I have always been a person who suffered considerably from performance anxiety but never "just because". I would, for example, be sitting at the computer only to realize that I had become quite uncomfortable. I was able to control these bouts by diverting myself and they would go away. At the same time, my insomnia was worsening.

This sudden appearance of anxiety has been puzzling and troubling for me.

I noticed in my reading of the AASA Forums that it is not unusual for people to report that they suffered panic attacks for some time before they were diagnosed with OSA. Have any of you suffered from anxiety attacks before you were diagnosed? Did they continue when your OSA was treated with a CPAP device?

posted in Sleep Apnea Circle - 7 replies

Anyone else with CSA?

2006-09-07T03:18:33Z

I've just been diagnosised with Central Sleep Apnea. The doctor says he has little info on this type of apnea as OSA is much more common. Does anyone know where I can find more info?

posted in Sleep Apnea Circle - 8 replies

I learned something today...

2006-09-04T04:09:41Z

Unlike OSA, CSA is not neccsarily indicated by the presence of snoring.

FYI.
MC

posted in Sleep Apnea Circle - 1 reply

I will be gone 9/3 - 9/8...

2006-09-03T04:55:22Z

...so if I do not answer posts for a bit, it is not because I am disinterested. Have a good week, folks.

MC

posted in Sleep Apnea Circle - 0 replies