Hello.  I got the results of my sleep study yesterday: Upper Airway Resistance Syndrome.  I am feeling totally overwhelmed and sad.  I have been struggling with fatigue, brain fog, migraine and chronic daily headache, depression, etc for over 5 years, my former GP always poo-poo'd me and implied I was a hypochodriac or in some other way crazy.  I suppose I should mention that i am female and in my 30s and normal weight.  About a year ago it got so bad I was hospitalized and diagnosed with Bi-polar disorder, though the medications all made me much worse and eventually my therapist and my psychiatrist both decided I did not have bi-polar disorder.  I finally got a new GP who looked at my symptoms and my high blood pressure and suggested a sleep study.  So here I am, so tired I can't think, a little ( a lot) freaked out and nervous.  From what I have read today it is clear that all of my symptoms are pretty classic UARS/sleep apnea symptoms, and I am really hopeful that CPAP will make me feel better, but from my first attempt last night I can't even imagine getting used to CPAP.  It doesn't help that I got about 2 hours of sleep last night, and have a raging headache today.
 
So, long story short: I would love advice, support, wise anecdotes, suggestions on adjusting to CPAP, and / or inspirational tales of complete recovery. (Well, not recovery I guess, but improvement.)  Thanks.  Rachael

For one... congratulations on getting to where you are. I went through a lot of the same things. I just posted the short version of my long story in the forum today - "You can have my CPAP when you pry it from my COLD DEAD HANDS".

You are taking the first step on your way to recovery and have faith that this many people can't be wrong. If you keep with it, you will feel better! I started out slowly, 3 hours, then 4 then 5... until I sleep all night with it on now. Fortunately I had a friend who gave me a lot of good advice about the process.  It takes time. Be patient and don't rush it... yes, I know.. hard to do when you're a wreck. Just know it doesn't happen overnight - well, you know what I mean. :)  They told me at the medical supply store that if I wake up and want to take it off.. do.  Otherwise I'll start hating it. It worked. I took it off when I felt I had to and now I'm up to 8 hours.

I've gotten some great support in this forum before my sleep studies and now after. Keep in touch, let us know about your progress!

Take Care! lindsyj

HI  since most of us snore heavily I assume no one noticed this in hospital and wondered about a sleep disorder
do be patient with the CPAP, wear the mask around the house with no air hose to get used to the feeling of it on your face
then connect everything up and sit in a comfortable chair, watching TV, breathing thru the CPAP  but without thinking about it
no harm if you have a nap in the chair of course
if yours is a nose only mask the lips must stay tightly sealed, some of us tape our lips to make sure

dont worry what people may think of your appearance when wearing the mask, its for an inportant part of yopur health and no doubt your other problems will be reduced when you are getting refreshful sleep

i think we were in the same boat!  i also spent a year on bed rest with horrid symptoms and was diagnosed as bi-polar.  i could not function at all and was on total disability.  none of the meds helped, only made things worse.  eventually my psych admitted defeat.

fast forward one year to a sleep study (only offered because my child was diagnosed with moderate apnea (fairly coincidentally due to a link to adhd symptoms)).  i was diagnosed as severe.  

cpap has changed my life.  i'm not on any psych meds anymore and feel so good.  positive self-talk is crucial to success at cpap.  you can do it because you have to if you want your life back.  good luck to you!

Thanks everyone.  I took a long nap this afternoon with the CPAP, using a different mask than I had last night and with the humdity thing on.  I actually feel better already.  Wish me luck tonight.  I really think if I can get restful sleep it will make such a difference in my life.  Positive attitude and self-talk.. I think I can I think I can....

Any one else have Upper Airway Resistance Syndrom?  Or are you all having full apneas?  Any one know anything about Alpha Delta sleep?  I apperently had a lot of that.

Thanks again.

R

i was 30 when i found out i had sleep apnea , at that time i had been going to the doctors for 7 years falling out of bed everynight , carpet burns on my face , cutting my face open in many places , falling asleep 23 hours aday anywhere, then i changed my doctor who sent me straight to a sleep lab , i had a sleep study stopping breathing 57 times in one night , i thought then my life was over , i was give the cpap machine and thought this is it my life is over , the  1st 2weeks i thought i couldn't get used to it but to cut a long story short , 7 years later , i love my mask the rewards of wearing it are over whelming , my mask is now my best friend where i go my mask goes . we call my machine the E machine because i became hypoactive , because i had slept for the previous 7 years the difference was amazing i was constantly thinking what i was going to do next , i once thought my life was over how wrong i was , it was just the start good luck

Hey Rachel:

First, Welcome!  Second, you have found a GREAT site for help!  

With respect to getting use to your mask, I commented to another poster about making friends with your mask (figuratively).   Realize that your mask will be a tool that will help you feel better.   As you can see from your short nap, it already had a positive impact.  Look to your mask as a very positive thing that will help prevent all sorts of health problems.

I, myself, took a short nap after getting my mask. I've adapted fairly well.  If you have problems adjusting, try a behavior modification technique of setting a goal each night on how long you will use your mask.   After reaching your goal, reward yourself with something you enjoy . . . . avoid the candy and chocolate . . .  the you WILL have a weight problem.  

It may be disappointing that you have Obstructive Sleep Apnea (OSA) given that you are not "overweight".   I'm a triathlete . . . if you had told me several months ago (given that I had heard about or knew about sleep apnea) that I had sleep apnea, I would have said you're crazy.   I don't fit the classic "overweight" OSA profile (if you were profiling based upon weight alone.)   Although weight may be a factor in many cases, it is not the deciding factor.  

BUT, know that you're not alone.   There is a whole community of people out here and out there that have OSA.  I learned of two very good friends that have OSA just this weekend.   So you are now a member of what is loving referred to as "Planet Hosehead"!  

Ask questions, seek out knowledge and don't be afraid to share your thoughts, frustrations, and concerns.   This is why this forum is here.  To help address the needs of the community of people that have sleep issues.  

Keep us up to date on your progress!

THANKS!

Anonymous wrote:

Thanks everyone.  I took a long nap this afternoon with the CPAP, using a different mask than I had last night and with the humdity thing on.  I actually feel better already.  Wish me luck tonight.  I really think if I can get restful sleep it will make such a difference in my life.  Positive attitude and self-talk.. I think I can I think I can....

Any one else have Upper Airway Resistance Syndrom?  Or are you all having full apneas?  Any one know anything about Alpha Delta sleep?  I apperently had a lot of that.

Thanks again.

R

Hi Rachel,
When I first began to have serious health issues I got the RAD/ARS diagnosis.  Then exactly one year later and I do mean exactly, I was sent through a series of cardio-pulmanary tests and to see a pulmanist.  The pulmanist diagnosed COPD and ordered a sleep study.  The study revealed severe apnea.  I got a CPAP and O2 concentrator.  I get 3 liters of O2 bled into my CPAP hose.

I have been using CPAP for two weeks last night and nothing short of them confiscating my machines is going to stop me!  I have ordered some "pad a cheek" products to add some comfort and style   to the mask.  I should have them Monday at the latest.  I don't know where your located but if it is anywhere west of the Mississippi you are probably going to want the humidifier.  If you notice improvement after a good nap.....it can only get better.

I did a quick Google search for Alpha Data sleep and I think you should also, and then ask your Dr. some questions about just what you have going on.

My last bit of advice is join the forum....it's free and makes for a better experience.  You can take advantage of some features you can't use as a guest.


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Hoax~Slayer Forums

Thanks all!

Jean, every time I read about people who have O2 in their mask I get jelous.  I don't know why but it seems like it would be so great for my headaches.  

Had an okay night of sleep last night, didn't make it all night with the mask, but longer than the night before.  

I did have some strange sensations today... an odd, lightness in my limbs, a strange lack of ache in my head...  I was very confused but I thought it might be... rest?

Seriously, I did feel a little better today.  At any rate I no longer feel freaked out.  

So.  Off to bed.  Wish me luck.  My goal tonight is to keep the mask on for at least 4 hours.

It took me an astonishing short time to get used to the mask (Swift). However, most don't and it is great that you wore it longer last night. If this mask doesn't work well for you, try another there are so many different masks out there.

I simply must post of picture of my Rube Goldberg PAP setup.

I'm on my 5th week of wearing the CPAP (nose only mask) and still adjusting............ I fell off the wagon last nite. Mask noises were waking me up so I kept trying different fit positions for the desired silence. I'm typically not a light sleeper, but just couldn't seem to get settled! I tossed the mask on the table and immediately fell right asleep. Of course when I awoke in the morning, my wife had disappeared to the next room. It's a rough adjustment for me.
     My ramp starts at 5 and increases to 14 within 45 minutes. Sometimes the increased pressure wakes me up and I have to ramp down in the middle of the night. I hate that!!!  At times, it feels like 14 is way too much pressure. I'll take any and all suggestions. I'm certainly not giving up, as I now don't need naps during the day very often. Please send me some "war stories" about similar experiences.

I finally registered, so this is me, Rachael.

I made it almost all night with the mask last night.  I have been going to bed later and later, and sleeping later and later because I am a teacher and it's winter break and I have no discipline.  Watched two whole videos last night and stayed awake.  Just to clarify, I stayed awake for two videos.

Now, for other people I am sure that is no big deal, but on that epsworth sleepiness thing I had to honestly say that any reading, dark room, passenger in a car, etc. I have a 100% chance of falling asleep.  I never get to watch more than a few minutes of a video.  For most of the last year I would fall asleep within moments of lying down and my husband would have to take my book off of my face.  Once I even fell asleep with my book in my hand, in the air.  My husband left me that way to see how long it would take me to move and it was over an hour.

But I digress.  

So, last night I kept the mask on from midnight to 6 am.  I think I had the humidity up too high because water kept condensing on my nose and itching.  I have two masks, one of the nasel pillow kind, I think its a swift, and one that covers my whole nose and has a super-dorky forhead thing.  I want to use the nasel pillow, but have been using the other kind because the whole having my nostrils covered thing makes me sort of freak out.  

I feel okay.  I had been feeling better since I started taking magnesium and a variety of other vitamins that are supposed to support the adrenals, but this is a noticable improvment.  

I have no advice for Newbie, I am even newer than you to planet hosehead.  I am so grateful to my DME dude for giving me two masks to try though!  Sounds like it makes a huge difference.

I am using a resmed autopap, with heat/humidity on 4, I start at a pressure of 4 and look to be avaraging a pressure of 9, I don't really notice the ramping up, I think I have fallen asleep too fast.  

I find it really hard at first when I put it on because I don't feel like I can breath out against the air.  I do have the cflex thingy, it's set on 2.  I seem to be adjusting to it slowly though.

I had also had a air-hunger feeling during the day over the last year, and I have been considering getting a breath trainer thing, I forget what they are called exactly but it's basically resistance training for your respiratory muscles.  If Digerido training works it seems to make sense that training repiratory muscles to be stronger and more efficient might work too.  Any way, the air trainer thing is relatively cheap and seems worth a try.  On the other hand breathing out against the cpap might serve the same function!

Rachael

For those of you who are experiencing that shortness of breath or "air hunger" feeling during the day there is a simple test that only takes a minute or two and can be done in most doctors' offices. The device is called a spirometer and the test is called spirometry.

There is also a test referred to as the 6 minute walk test. It is simple and easy enough but not really called for when the spirometry test is simpler and shorter timewise. Still, if your doctor doesn't have a spirometer in his office he might have a finger pulse oximeter and thus could conduct the six minute walk test instead.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, ProBasics Zzz-Mask full face, ResScan 3.7, S8 ResLink, Embla oximeter.

Guest Rachel and Newie,

I have been using CPAP for over  1 month. My first few weeks on CPAP were awful with little sleep and much frustration. This site has been a great resource. I solved the following problems through the recommended books, FAQs, and member posts.

The blowing air felt very unpleasant and made my sinuses ache. I was able to get a humidifier accessory and tested higher humidity settings progressively each night. Finally the highest settings felt comfortable to me.

Then I got "rain-out". Drops of cold water falling on my face. I tried running the hose under the covers and it has stopped the problem.

I got some books-on-tape at the local library and listen on ear phones to distract me from the headache, the mask, the noise, etc.

It took about a month to get used to the pressure. I am at 10 or less for 90% of the time. I tried a machine with C-Flex which reduces the pressure on exhale. This felt much better. Then I switched to auto-PAP which is supposed to allow more pressure flexibility.

I have taken off the mask or had leakage (loud blowing noise) without being aware of it. I asked my partner to awaken me any time this happens.

I am a stomach/side sleeper and my mask leaks a lot in those positions. I seem to have very few leaks when I sleep on my back. So I have been sleeping on the couch on my back where it is difficult to roll over. I hope to get used to sleeping on my back.

I had awful symptoms of OSAHS, for example, headaches. I had a severe headache for almost all of 2006. So  I am willing/eager to try any treatment or adjustments (except surgery).

This week I finally started getting good results:  sleeping for up to 6 hours on the mask without waking up and my headache is about half as bad.

I am also buying a new mask to see if I can get any improvement on leakage/comfort. The costs are a big deal because I have been unemployed for almost 2 years, but I beleive that sleep apnea has, is, and will continue RUINING my life unless I can beat it.

Good luck to all and my Thanks to the moderators and posters!