Newbie observations and questions

Hello everyone,

I am a recently diagnosed to sleep apnea and restless leg syndrome. I do know I have the apnea part. Relatives watching me sleep recommended I see a doctor. I don't know how I have restless leg syndrome. I have read up on the condition and I have no symptoms for what is describe on most medical websites. My doctor has prescribed Requip for the RLS. I researched this drug before taking it and the possible side effects scares the ever living hell out of me. The drug can even make the conditions worse in some cases. What is even funnier is that Requip can give you the same conditions that apnea already causes and maybe worse. I am holding off on this til I talk to my doctor again.

I had been researching the different types of CPAP machines and masks and was a bit overwhelmed to the choices out there. I was told by the doctor's office that a representative would contact me about fitting me with a machine. Well it turned out it wasn't a consultation to allow me to choose. It was more like here is your machine and here is your mask and here how they work. Sign here please. He did say he could work with me on the mask fitting and types if this didnt work out. In the sleep study I just couldn't wear the nasal pillow type mask. I could not get use to keeping my mouth shut and every time I would open my mouth you get an overwhelming sensation you are being smothered to death. I kept waking me up til I put the full face mask on. Well I got the nasal pillows from this Rep. He said these are better than usual full face mask generally and take time to getting use to. I guess I can try to get use to this mask type. The mask type is a resperonics optilife nasal pillow mask. There is no model number I see anywhere in the paperwork or on the mask itself other that the optilife logo. The CPAP machine is a Fisher&Paykel Sleepstyle 200 model HC234.

Well, the first thing from reading the boards is that in any machine I should get, it should have a smart card with software to provide a readout. This machine does not have this. It only has a compliance readout. When I asked the Rep why machines with readers are prescribed, he stated my doctor doesn't do card readouts. I told the Rep I had read here on this site the data gathered is supposed to help you better manage your condition. He said that you will know it is working if you start to feel better.

The first night did not go so well, mostly because I am in the midst of a bad sinus cold with a horrible sinus drip. The machine has a ramp up feature to full pressure in 20 mins. The pressure setting I know is set at 14. This I questioned the Rep about because the technician at the sleep study told me the pressure needed to stop my apneas was found to be 10. This I know because she told me that when she pumped it to 12 it woke me up. Somehow I got a setting of 14 on my prescription. The machine ramped up and having to keep my mouth shut was kind of impossible due the fact I was coughing and wheezing. Also the pressure gave me the sensation that the sinus drip was going down the windpipe and that induce some choking/coughing. Another problem I noticed if the fact that the area behind my eyes was bulging and a sensation of pressure behind my eyes with a stream of air coming out of my eye sockets. At first the air was tickling but the pressure literally made my eyeballs hurt. I might be able to learn to use the nasal pillows but how in the hell do you stop air coming out of your eye sockets?

All in all I want to get better because I tired of being tired but it seems I am off to a rough start.

Any recommendations to a machine?
Any recommendations to a mask and should I even try to stick with the nasal pillows or go back to what worked?

taberge67 wrote:Any recommendations to a machine?
Any recommendations to a mask and should I even try to stick with the nasal pillows or go back to what worked?

Accept nothing less than a "fully data capable" machine... in other words a machine that will provide you with data about your therapy so you can tell whether the therapy is working for you. Without being able to see that data neither you nor anyone else will know for certain if the machine and pressure setting is actually doing for you.

As an example I was titrated at a pressure of 8 cmH20 but find that I need to have my pressure set at minimum of 10 to get the apneas treated. The only reason I know that is that my machine is "fully data capable".

Mask choices are an entirely different matter and very personal because what works well for one person may not necessarily work well for another person. Some go through several masks before discovering what works for them so do not get discouraged with the process.

Well, the first thing from reading the boards is that in any machine I should get, it should have a smart card with software to provide a readout. This machine does not have this. It only has a compliance readout. When I asked the Rep why machines with readers are prescribed, he stated my doctor doesn't do card readouts. I told the Rep I had read here on this site the data gathered is supposed to help you better manage your condition. He said that you will know it is working if you start to feel better.

this is so typical!!!!
Please see the thread below for the best explanation given by "Snoredog" and "Restedgal" in why you should decide your own model of CPAP machine ( and why your Rep sticked you with this one).
You usually have 30 days to change your machine, as well as the mask you're using - free of charge!

viewtopic/t36003/New-here.html

The pressure setting I know is set at 14. This I questioned the Rep about because the technician at the sleep study told me the pressure needed to stop my apneas was found to be 10.

PLease advise your Rep that the setting is wrong, and get him to ajust it to the pressure prescribed. If you need to get a new prescrition, see your doctor and get it fixed as soon as possible!

At first the air was tickling but the pressure literally made my eyeballs hurt. I might be able to learn to use the nasal pillows but how in the hell do you stop air coming out of your eye sockets?

It seems that the mask you have isn't suited for you! SO MUCH DISCOMFORT ISN'T NORMAL!!!!
Get it changed ASAP; perhaps another type of mask ( such as the Headrest??) would work better?

Hang in there and let us know how things go....we care!
D.

I just went and talked to my doctor about the issues I was having. I had also requested and received a copy of both my PSG's. The doctor was a bit perturbed about me not taking the Requip even though I voiced concerns about it. I then asked him if usually went over the sleep studies with his patients and proceeded to do so. I clearly pointed out that on the first test I had zero leg movements compared to the second showing 55. If he would have asked me if I had problems during the cpap test the answer would have been absolutely. The clinic probably had THE most uncomfortable mask out there. It looked like I was going scuba diving and not to bed. Then the clinic stuck me in a room where all the equipment/hoses were on the wrong side of the bed for me. All I did all night was try to turn to my regular sleep side only to be foiled by the hose. My sleep efficiency was actually higher with the first test with full blown apnea attacks. I won the argument on the requip, no chance for that potentially harmful drug to get me.

On the second part about the equipment and mask, he said he did not know of anyone being able to read cards in this area and there was really no need for cards. On the pressure part, he did set it to 14 because 10 stopped the apneas but 14 was needed to do away with all hypopneas.

I check with my father and he goes to a dedicated sleep center in this same area. He has a Respironics REMstar pro with a heated humidifier and a card reader. His doctor requires him to bring the card in to be read.

My appointment with my father's sleep center is next week.

It's amazing that this can happen today. You have to wonder if the compliance stats would go way up if doctors like the one you saw were more competent. I'd seriously consider turning him into the appropriate medical board for his behavior.

I hate to even suggest this to you, because I can't imagine having to use this.

But this mask is specifically for people that have air leaking from their eye sockets.
Click here

I hope you have better luck with your dad's sleep doc.

taberge67 wrote:On the second part about the equipment and mask, he said he did not know of anyone being able to read cards in this area and there was really no need for cards. On the pressure part, he did set it to 14 because 10 stopped the apneas but 14 was needed to do away with all hypopneas.

I check with my father and he goes to a dedicated sleep center in this same area. He has a Respironics REMstar pro with a heated humidifier and a card reader. His doctor requires him to bring the card in to be read.

If you have a machine that has any data worth reading... it's well advised to get the equipment and read your own card.

Ok,

I decided to try and use this machine til I get something better. The leaky eye tear duct is more like the problem I am having. It seems to be a problem mostly on the exhale part. The pressure resistance on exhale seems to force a stream of air out my tear duct the same as if I were blowing my nose. What is so freaky is that the right eye is the only problem, the left does not seem to leak. Do full face masks usually cover enough area to possibly cover the tear duct? Either that or I am thinking of swimming goggles maybe? That link with the full head mask looks like some torture device. I would have to say no on that one unless it is the last option left to me. I am hoping to get some idea of what I need to look for this problem so I can make a better choice this next time rather than another choice made for me.

If not the mask, than is there a machine that is able to ramp the pressure down on exhales?

taberge67 wrote:If not the mask, than is there a machine that is able to ramp the pressure down on exhales?

Yes, that kind of machine is called a bi-level machine, and it can give you distinctly different pressures for exhale and inhale. Go for it.
O.

While I didn't have time to completely read everyone who posted before me this threat compelled me to respond to the orignial post.

YOU have to control your own destiny. DO NOT let your doc fax your prescription and sleep studies to the vendor of HIS choice. Get it yourself. Then shop around and decide if the local DMEs are cost effective given your insurance, deductable and copay. DO NOT let the doctor write a prescription you do not want, and DO NOT take a machine that is not what you want as this may stop you from getting what you really want with insurance coverage.

IF your "sleep doc" is not helpful, go to your regular doc with your data and ask for a prescription.

I just got a new one from my regular doc and due to insurance change, I have a new machine Resp M Auto with A flex 100% covered. By the way for those of you interested I ended up going through Apria (don't lynch me) as it was 100% covered and they would not 100% cover CPAP.com This time Apria gave me no trouble about the auto, sent it to my door UPS, and billed my insurance co under $600 for the unit. All depends on the coverage and contracts with the insurance co. I had to pull teeth last time to get an auto with my old insurance with the same Apria office.

Yes, the choices are overwhelming.

You need a data capable machine. You need to buy your own software and reader. An auto is best as it can always be set to straight cpap. Bi level if you need it. At 14 though unless you have other breathing issues I am not sure you do (I am 13 but run an auto 10 - 15).

At 14 a newbie should start with a machine with exhale relief C FLEX, A Flex or the EPR.

Don't give up on the nasal pillows. They do take some getting used to. Maybe not the best choice to start, but don't write them off for the future due to issues when you just started.

As to no one reading the card. That is total BS. That is their excuse to give you a base machine and make a large profit.

Read all the info and the infor with the lightbulb for newbie's figure out what you want and be firm.

taberge67 wrote:Do full face masks usually cover enough area to possibly cover the tear duct?

Unfortunately, no. The "torture device" mask I linked to is the only one I have ever heard of that is designed to solve the "air leaking through the eye socket" problem.

taberge67 wrote:Either that or I am thinking of swimming goggles maybe?

I hadn't thought of that. But I like it. It just may work. I see two challenges. One is that swim goggles are designed to keep higher pressure stuff (a.k.a. water) away from your eyes. The pressure of the water actually helps seal the goggles to your face. You need something to keep the higher pressure stuff (a.k.a. CPAP air) around your eyes.

The second challenge is finding a strap technology that is comfortable enough to wear all night without getting a headache, or a nasty case of morning goggle eyes.

Here is a site that I use for my swim gear needs. No I don't get any commission. Here is the goggles page. Goggles page You can even get prescription goggles.

taberge67 wrote:That link with the full head mask looks like some torture device. I would have to say no on that one unless it is the last option left to me.

As I said before, I hated to even suggest it.

As an update,

I made the switch to the new sleep doctor.

He prescribe for me a Remstar M series W Cflex @3 10cm with a Resmed Ultra mirage 2 mask with headgear.

I saw somewhere in and around the site that someone recieved a plus instead of a pro, I wonder if this DME guy is going to try to give me a plus? From what I understand the plus is a compliance only card reader?

Just from talking to just the nurse, the nurse seem to know more apnea than my GP doctor.
I don't know if they are going to be able to redo the cpap titration test. It will depend on the insurance approval. It seems the Sleep Lab that my GP sent me to has no accreditation. My new doctor was a bit annoyed I think. I heard him tell the nurse outside the room after he left that he had to clean up another one of their (the other sleep labs) messes again. He was kind of shocked that the machine I had had no card reader at all, not even one for just compliance.

The new doctor set my pressure to 10. Reading the report, he said he didn't know why I was started out so high. I hadn't even told him the actual tech that cpap titration night gave me a setting of 10 she used to stop all apneas. BUT, the big thing is that at 10 which they tested and had an actual fitting for a mask resulted in no air streaming out my tear ducts!!!

I go back in 3 weeks and I can't wait to get my new machine.
I may be put off from the experience but I kinda have this feeling I may have to fight with my DME to actually get my new machine. God I hope not.

At least I found this site even though I wished I had found it before the initial testing began. Better late than never

taberge67 wrote: All in all I want to get better because I tired of being tired but it seems I am off to a rough start.

just hang out here, keep asking questions, it will get better.

After a game of phone tag with my DME, I found out he was indeed trying to stick me with the plus and not the pro. The prescription did not specify the pro but I know that he knows my new doctor requires the pro. He had in fact told me that my newest doctor was the only one to require fully data capable machines at the time he dropped off my first machine. What is it that I am not understanding about this game? Does this man not make more money if the machine cost more money to rent? I told him to hold off, that I was going to contact the doctor first to clear up this confusion. No sooner than I could leave a message at the doctor's office, he called me back saying he could get me what I wanted. I want to make sure this machine will work for me. I'm thinking 4-6 months and I'm going to outright buy my machine online. I don't won't to give this guy anymore money than I have to at this point.