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Permalink Reply by KAREN JAFFE on April 30, 2009 at 3:51pm

The one thing I wished I had know when I started treatment with the cpap was that it is not a cure. What I mean is, I thought it would get rid of all the fatigue. Although I feel better and think more clearly I am still tired all the time. My doctor put me on Provigil. It does help me think more clearly for about 4 hours but my body still tells me to lay in the recliner and do nothing.

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Permalink Reply by Cathy s on April 30, 2009 at 6:21pm

Judy said:

Cathy s said:

Well my provider finally showed up and looked at my mask and she was able to fix it so guess it wasnt too defective. But I asked her a second time about the price and she said they retail $800 but for insurence companies they only have to pay $110. I also wish when I had started this that I had known the dr I went to was an uncaring ass!! I went to his office once and was seen by a nurse practitioner. Then I went and had a followup about 6 months after my study and the dr said your next follow up will be in one year and we will call you to schedule it. They never called.back so after awhile I realized that it had been awhile and they hadnt called so I called there. The receptionist asked if I was having problems. I told her no it was just time for a followup. She told me if I was not having problems there was no reason for me to be calling. Ive had my cpap for 9 years and have not seen the dr that prescribed it since 6 months after I got it!!

CathyS, since you've had your current CPAP for 9 years your insurance should be willing to purchase a new one for you. Usually they will pay to replace them after 5 years. Since your current CPAP is still running so well it would be worth keeping as a backup and/or travel xPAP and meanwhile depending on your copays and annual deductable you might be able to get a fully data capable APAP or CPAP. You would need a new script, but if you have a good rapport w/your family doctor he/she could write the script for you. Something to think about.

Actually I have a new cpap!! I had surgery last september and the doctor asked me to bring my cpap to the hospital with me. When I did they had respiratory therapy check it over while I was in surgery. When I woke up I had a new machine and the respiratory therapist came in and told me that since mine was so old and all they had gotten me a new one. And by the way this is a different thread but the surgery I had was gastric bypass and since September Ive lost 120 pounds!! As far as my insuance I have no co-pays and no deductables

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Permalink Reply by Teresa Greene on April 30, 2009 at 7:22pm

I wish I had known that there are some masks that are more comfortable than others and that you don't have to feel like a mummy for it to work. Good luck!

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Permalink Reply by Clyde C. Parker Jr. on April 30, 2009 at 8:38pm

My name is Clyde C. Parker Jr I have been on a CPAP machine since 1988. I have severe sleep apnea because of a face injury that damaged my nose and sinus. Everything I say will be from personal experience and not from another person. First let me say this: The medium size mask is usally appropiate for most people. Small frame and light weight people usually like the smaller mask. Your mask should be snug enough that you have no leaks. (NOT EXTREMY TIGHT, JUST SNUG.) If you sleep on your side, then there is more of a chance your mask will leak while you are asleep because of your movement while asleep. If you are using a rental machine you can get a new mask every three months. Take advange of it. the soft plastic on the old mask are bad about cracking and leaking. Listen closely to what I am fixing to say: Wash your mask and hose at least three times a week in warm soapy water. (NOT HOT WATER BUT WARM.) Also wash your filter that is in your CPAP machine. If you are sick with a cold or the flue, wash them every day because of the jerms from the cold or the flue; If you choose to ignore keeping them clean you wil get a severe sinus infection you wish you never had. Believe me, I know what I am talking about. I have been there and you do not want a severe sinus infection. Also, if the air in your room is too cold, then pull your hose under the covers and that will warm the air coming into your mask. You may have to wait a few minutes but it will warm the air. Another warning you need to be aware of and that is this: If the air does leak and blow into your eyes for a long time, it will cause an infection, and can cause you to have Bell Palsy. I have had it twice; once for over a year; another time for about 1 year. Another warning you need to be aware of and that is this. Too low of a setting can drop your blood oxygen levil and you can die in your sleep. When I first got on a CPAP machine, my oxygen level was in the low 50's. If it wasn't for God's grace I would have died in my sleep. Also, too high of a setting for too long of a time can raise your blood oxygen and too much oxygen for too long can damage the eye sight. Also, too high of a setting will cause dry mouth. My dry mouth started when my CPAP setting went above 12. If anyone is suffering from dry mouth, then buy you a large 15 slice pack of sugar free extra gum and chew the whole pack up into one big ball, and then put it in your mouth just long enough to saturate your mouth with the juice from the gum. (DO NOT GO TO SLEEP WITH THE GUM IN YOUR MOUTH); put it in a container with a lid on it; and everytime you wake up during the night, put the gum back in your mouth just long ebough for the juice to saturate your mouth again, and repeat it everytime you wake up during the night.That works real well for me. Friends, I am not a doctor, nor am I some smart mouth know it all, but I do know what I have learned from 21 years of personal experience on a CPAP machine. Friends, if I can be of any help to anyone, just ask, and if I don't know the answer, I will at least, say so.
Sincerely; Evangelist and Author
Clyde C. Parker Jr.
Heavenly Nuggets Evangelistic Outreach Ministry
http://nuggets.flashbuilder.net/
email me at<>heavenlynuggets@cableone.net

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Permalink Reply by Chris on May 9, 2009 at 8:50pm

When Is this going to help.If it is going to help. Thats what I would like to know. It has been almost a week since I started using a cpap machine and I am still half a sleep all the time. Very ticked off about that. I dont want to spend the rest of my life just working and sleeping.

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Permalink Reply by RockRpsgt on May 9, 2009 at 9:42pm

Chris be patient it will come. You first have to pay off your sleep debt. This is the amount of sleep that you have lost due to work,family, and apnea. You may want to try goig to bed an hour early or sleeping an hour longer until your body is able to catch up. It will happen! Don't give up.

Chris said:

When Is this going to help.If it is going to help. Thats what I would like to know. It has been almost a week since I started using a cpap machine and I am still half a sleep all the time. Very ticked off about that. I dont want to spend the rest of my life just working and sleeping.

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Permalink Reply by Kristina Zabala on May 10, 2009 at 6:42am

I wish I had known that I eventually would get used to it. I did, but it took about six weeks until I consistently quit pulling it off in my sleep. A mask that works well for you definitely makes a difference. If you don't have a humidifier, but the hose under the covers with you to keep it warm. The first med supply company sold me what made them the biggest profit I think. When I told them my mask wasn't working for me, their solution was to let me buy another one. [AVOID APRIA] I couldn't afford one, so I used my first mask (an UltraMirage) for a few years. It was okay, but it seemed like I kept knocking it sideways, and it didn't really feel very soft with the gel center. Wearing it hurt my forehead a lot. Then I saw an ad online for one that really made sense to me because it "floats" on air instead of gel. It's the Activa by ResMed. I got it much cheaper than at my local supplier, it works great, and I love it. Once you find a mask that works for you, it's all downhill from there.

When I got my new machine, I decided that I wanted to try a full-face mask because sometimes my nose gets stuffy. My sleep clinic let me try all that they had and even said they'd order one if we couldn't find one that worked. They even let me bring a couple of them home to try. I got leaks with all of them, no matter how tight I cinched them up. I must have a strangely shaped face. I did end up getting a full face one, but it does leak, so I almost never use it. If your provider has masks, keep trying them until you find one that works best. Adding a humidifier helped and so did the nose spray that my ENT prescribed. Once you get used to it, you'll sleep like a baby. No matter what time I go to bed, my mask puts me to sleep right away now and I stay that way.

Oh, and another thing I wished I knew was to clean the mask with vinegar. I kept getting a rash on my face from it when I was only washing it with soap and water, now I don't. Plan some extra time when flying for them to inspect and test your machine. Okay, I've gone on long enough. Time to go to sleep.

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Permalink Reply by Mike on May 17, 2009 at 4:37pm

although this hasn't received a lot of attention or scrutiny yet, i would have liked to have known about this report that a certain sleep aid taken for first 2 weeks might help ...

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Permalink Reply by Karen on May 21, 2009 at 3:04pm

I wish I knew a nasal mask was better. I have a full face mask and found out the hard way about how is is if you have GERD. hoo boy. Have a face mask that is just for the nose ordered now.
Karen C.

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Permalink Reply by Gordon Osmond on June 12, 2009 at 10:36am

You have sleep Apnoea (What the hell is that?)
This is your CPap machine. (Did I get a choice?)
It is set up for you. If it needs adjusting or you need new filters, go to here (the local pharmacist.)

After much trial and error and three machines replaced under warranty, I feel reasonably confident. I sleep better. I don't fall asleep at the drop of the hat.

But, believe me, here on sleepguide, one way or another, I found the answer. Just to share experiences has been a big boost. Thanks for your help my friends.

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