Newbie... PLEASE HELP!!!!!!!!!!!!

I really hope someone can read my story and help...

In early 2008 my family doctor suggested that I go to have a sleep study done to see if I had sleep apnea. It went like this...

Do you Snore? ah, according to my wife.... YES

Ok, you probably have sleep apnea.

Done deal, I was on my way to the clinic at the local hosptial last July.

Step1 - Upon my arrival, I am greeted by a 22 year old telling me that he will be observing me tonight and that he had only done this a few months. I barely slept b/c the bed was basically a cot and of course I was hooked up to 8,438 wires!!! 5am rolls around and the kid comes in and says that he can not officialy say it, but I had sleep apnea.

Later that day I get a phone call that the Imaginary doctor has reviewed my chart and wants me to come in for another study to put me on the machine... Please do not ask my numbers b/c they were never really explained all that well by the kid or the person setting up the appointment.

Step 2 - I go back in for the 2nd night to be greeted by another 22 year old kid that had been doing this for about 4 months! Again, I barely slept at all and kept waking up b/c I kept moving and yanking the wires out from under my cot. 5am rolls around and the kid says that he thought a pressure of 10 worked fairly well and that the MIrage swift II was the mask for me.


Step 3 - I get a call from the medical supply company and they come out and give me a 20 minute tutorial on how my life will change.... WRONG... I ended up not being able to sleep with that mask b/c I felt that I could not breath at all... LIKE I WAS SUFFOCATING. I ended up changing to the SWIFT LT and that actually works 3 of 4 nights a week...

Fast forward today...

-I have never once had a good night sleep since I have been on CPAP
-I Used to sleep better and feel WAY less tired during the day before CPAP - (It actually crossed me mind that this was a scam, LOL)
-I am more irritable during the day then I have ever been
-I still have yet to see my imaginary doctor... Did get a couple of bills from neverland though...
-My Imaginary doctor increased my air pressure when I complained I never saw him (this was through my diagnosis from the nurse on the phone)
-I have tried every humidifier setting on my machine (Remstar Plus M Series)- who is the rocket scientist who put the hologen beams in the top buttons???? try to sleep when they light up a flight path!!!!!!!!!
-I think I sleep off and on with my mouth open... Tried the strap only to feel like my head would explode so I took it off.
-Really am afraid to try the full mask for suffocation feelings...

-AND FINALLY... I AM TAKING AFRIN NIGHTLY B/C I CAN NOT BREATH THROUGH MY NOSE WITHOUT IT AT ALL... WHEN I WENT BACK TO MY REGULAR DOC. HE GAVE ME NASONEX BUT THAT DID NOT WORK SO BACK TO THE AFRIN I GO EVEN THOUGH I KNOW IT IS BAD...WITHOUT IT I CAN NOT USE THE MACHINE AND NOW I AM WAY WAY WORSE THE NEXT DAY WITHOUT IT.


Then I try to call a new doctor in Orlando and pratically beg for an appointment ASAP and the soonest I get is the end of March!!!!!!!!!
HELP!!!!!!!!!!!!!!!!!

Ok, first, if you can, calm down and take a deep breath. I know that's difficult right now, but you gotta try. Unfortunately, you do not have a machine that is data capable, so you have no way to find out if your treatment is being effective or not right now. So, we have to ask some questions, please be patient with us.....

What insurance do you have? (Will they pay for another study at a different facility?)
If the insurance will pay for a new study, can you get the doc to schedule one BEFORE you go see him? My doc had us do the sleep study before we actually saw him.....by the time I saw the doc, I was on CPAP for a week but I had a great DME that was explaining alot.

If you can get a new study and scrip, will your insurance pay for a new machine at this point, one that is data capable if the doctor prescribes it for you, since obviously your treatment is not effective under the current setup.....

One step at a time, we'll help all we can....

Welcome aboard! Hopefully things will start to fall into place for you now. You are apparently become more involved in your own treatment which is good.

Find out about your insurance if they will cover another study. Most will especially if you are having problems. If they will at least you have stuck with it and proven that the cpap isn't working for you and you need something else. If you can't tolerate the pressure your doctor may want to put you on a BiPap which is one pressure of inhalation and a lower pressure for exhalation.

I understand your frustration as I was frustrated enough myself to quit four years ago. I had no support and no sites like this to turn to. This site is here and you can ask away and get answers.

Good luck keep at it

Thank you so much! I have United Healthcare CCO... I will probably have to use my spending account up for another study (High Deductible Plan). The sad thing is that I feel that I was taken advantage of big time.

I have never spoken to a doctor
I do not know my settings... ( I was told if I bring my machine in that they could give that info to me???)


I have had my sleep study results transferred to this new place... I feel that I have not changed physically in the last 8 months to suggest that the overall study would results would change woould they?

Anyone ever heard of Dr. Decker in Orlando, fl? That is where I am set to go now.

Given your description of the first study, you doc may want to schedule a new one...or he may just adjust your machine and settings...either way, see if you can get a new fully data capable machine....if the insurance won't cover it (high deductible), see if you can get it online (CPAP.com) is probably cheaper than going out of pocket locally. Others here can give you the info on how to do that.

You have been wonderful! Thank you!

Welcome! Your experience isn't unusual based upon many posts I've read over time. You're taking charge so it should go smoother.

Is your current machine paid for in full by your insurance company or is it a rental or lease? It is probably a rental. Most insurance companies want to know the machine is working for you before paying for it. Your doctor can prescribe a data capable machine if nothing else but on the basis that the doctor wants to see your data!

If you were issued a Respironics or ResMed mask, then both those companies have a 30 day warranty to the DME to replace the mask if it doesn't work out. Make certain if your DME replaces your mask that they don't bill for both, only for the replacement and credits the one taken back under warranty.

I find that prescription and over-the-counter medications designed to clear nasal passages end up causing irritation that then need to be cleared - a vicious cycle. I have found that by using plain salt water in a Neti Pot http://www.himalayaninstitute.org/Netip ... teway.aspx, I am able to keep my nasal passages healthy and clear. (There was a time I couldn't breath through my nose and even resorted to prescription nasal inhalers). Perhaps this will work for you too. Many on CPAPtalk use this and have found it helpful. I like the little blue pot that has a lid that is available at many U. S. drugstores. I bought a bag of the special fine salt. I haven't had a plugged nose since using it. It's especially wonderful during pollen season to wash out the pollen and prevent allergic reactions.

Other products I use that helped me achieve a wonderful apena therapy experience are:
PurSleep: I use my favorites to achieve a more pleasant experience. I love the essential oil smell versus plastic. It's important to use essential oils without chemical byproduct and ones designed for inhaling. PurSleep has these oils.http://pursleep.com/
Pad-a-Cheek: I use the microfleece cover on my CL2 to keep the headgear from chafing my forehead. http://www.padacheek.com/
Travel Hose Buddy: I use this to keep my hose under control and to help stabilize my mask so it's not tugged off by the hose. https://www.cpap.com/productpage/travel ... ystem.html
Hose cover:A hose cover helps control moisture in the hose caused from the heated humidifier warm air versus a cooler room (condensation in the hose). https://www.cpap.com/productpage/respir ... -hose.html

It took me over a year to try many things that eventually resulted in a wonderful apnea therapy experience. Keep it up - keep taking charge and you'll get there. Again, welcome.

I don't think you need another sleep study and I certainly wouldn't wait for one. You need to take the time to educate yourself, learn how to take charge of your treatment.

Who cares more about you than YOU? There is NO pill to give you the knowledge, NONE.

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf

Start at the Yellow Lite bulb - Our Collective Wisdom found at the top of the page at http://www.cpaptalk.com
our-collective-cpap-wisdom.php
new-cpap-user.php

If you've been reading - do you have copy your PSG? Of your prescription? Why not?

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf
http://www.resmed.com/en-us/patients/un ... 40x380.swf
http://www.nbc.com/Saturday_Night_Live/ ... -2/742141/

take a breath, put on your reading glasses and get comfy
there is NO wisdom pill
and one size does NOT fit ALL
Faces are like fingerprints

Reading this will help -
For Acronyms & Definitions
http://www.sleepnet.com/definition.html

Where A CPAP Newbie Should Start
viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html

READ cpaptalk.com FAQ
faq.php


Learn to search
use Google & the syntax "search words" site:www.cpaptalk.com
or the Advanced Search at the top of each page.
or here - viewtopic/t35702/search.php

This is the Yellow Lite bulb you'll hear people mention aka "Our Collective Wisdom" -
our-collective-cpap-wisdom.php

Search here if you like videos-
cpaptalk-cpap-video-movie.php

Read some more.
Good Luck,
GumbyCT

Mr. No Sleep..........

Your smartest move....is to follow Gumby's suggestions......they are correct......dead-on right.

You have to take charge of your own therapy.......

You can do it!

The benefits are 100 times worth it......