Hi everyone,
I have both obstructive and central sleep apnea. I am using an adapto servo ventilator with a face mask and I sleep through the night. I had to use a chin strap, but I go to sleep and wake up in the morning. The problem is that I still feel as tired. Even before using the machine, I never woke up, but I was extremely tired all the time. I still feel as tired. It's been only 5 days since I started using the machine. Am I expecting too much? Is it a matter of recovering from many years of lack of sleep?
I am having red welts around my nose too, and the technician recommeded ky jelly or mole skin to fit around the mask. I am hoping to try nose pillows instead. The marks remain with me during the day, they don't fade, so it is really not good to be walking around with the shape of my face mask in red around my face. Thank you so much for any advice and suggestions.

lucy wrote:

Hi everyone,
I have both obstructive and central sleep apnea. I am using an adapto servo ventilator with a face mask and I sleep through the night. I had to use a chin strap, but I go to sleep and wake up in the morning. The problem is that I still feel as tired. Even before using the machine, I never woke up, but I was extremely tired all the time. I still feel as tired. It's been only 5 days since I started using the machine. Am I expecting too much? Is it a matter of recovering from many years of lack of sleep?
I am having red welts around my nose too, and the technician recommeded ky jelly or mole skin to fit around the mask. I am hoping to try nose pillows instead. The marks remain with me during the day, they don't fade, so it is really not good to be walking around with the shape of my face mask in red around my face. Thank you so much for any advice and suggestions.

Lucy,

You will have to give some more detail, otherwise the thread may lose direction.

Can you tell us more about the ventilator..........more so the inhalation and exhalation pressures.
Were you told why a ventilator was prescribed ? Do you have other respiratory conditions ? or Cardiac problems (CHF etc).
Can you tell us the name and type of mask. I believe it is some form of nasal mask.............also, do you normally breathe through your nose (only), mouth (only) or a little of both.
Mole skin is grand, but it sounds like you have a badly fitted mask. Don't use the KY jelly. You may also have the straps too tight.

Have you been supplied by a DME, if so have they given you choices, or are they following a prescription toi the letter.

Finally...........You should get a copy of your sleep study and titration report......you are entitled to it.

And really finally, is your physician a respiratory sleep disorders specialist, a neurologist or GP.

Please respond with as much information as you can get. I have no doubt that someone here can come up with some answers.

BTW........welcome to the murky world of sleep disorders treatment equipment    

Kind regards,

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Hi Daniel,
Thank you so much for your answer. I will try to provide answers. I truly need to get a copy of the sleep study. I have a mask called ultra, that is the type that was set in the configuration mode of the machine. It has little supports on the forehead and a full chamber that goes on my nose, and other than the marks, it actually is comfortable. My max pressure is 10 and minimum I believe it is 6. I was fit to the ventilator because CPAP did not work for me. After the third sleep study that much was evident. This machine seems to be working in the sense that at least I sleep, the CPAP just kept me awake.

I don't have any other medical conditions. I am in good health. Actually, it seems my sleep apnea is a product of the size of my bones, too small a frame, The central apnea who knows why I have it?

I also think the mask is not well fitted. People look at my face and think I am small or medium size when I am large most of the time. I talked to the company this afternoon and got the impression they just did not want to make another visit. At the end they agreed to come back and leave a larger mask (they offered to mail it) and maybe a nose pillow type. This was after I insisted I did not want to walk around with the red marks on my face. They actually suggested I might have skin that bruises too easily (which I have) and maybe there is nothing to do   They finally said they will come back with some more options but I have to wait for a call to schedule an appointment. They have not called yet, so I am dreading the marks tomorrow morning. It is a bit embarrasing  

I am happy with my doctor, she is a neurologist and she is the third doctor I see about this problem, she seems to have a lot of experience and she feels this machine is right for me. She wrote the prescription for this type of mask, but she also said if it did not work for me, to talk to the company and make sure I got options.

Thank you so very much for the welcome and the answer, I have to say I am so glad for this group, it can be a lonely, very tired world out there for those of us that have this condition

Hi Lucy,
despite the chinstrap you may be breathing thru your mouth, can anyone look at you while you are asleep?
you may do better with a full face mask, covers both nose and mouth

ordinary KY is recommended for skin marks as it doesnt harm the soft part of the mask


_________________
resmed S6 lightweight, respironics comfort gell mask using CPAP since 1995, no humidifier
during my many years of severe fatigue, no doctor ever asked me if I snored

Thank you Lynn,
I know the chin strap is working because I don't wake up, as soon as I breath through my mouth the pressure pushes air through my mouth and that wakes me up. I got a new mask, with a soft nasal sort of pillow. I tried it yesterday for the first time, it was a rough night. The marks from the other mask got very dark, it will take some time for them to disappear. The new mask seems to be working, I woke up one time through the night and then went back to sleep, the problem is I feel as tired as before when I wake up. I try to remember what the doctor said, that very few people start using the machine and then all issues just disappear and that it can take up to 6 weeks to improve but I am so tired all the time I could just sit and cry. Thanks again for the answer!

Quote:

Thank you so much for your answer. I will try to provide answers. I truly need to get a copy of the sleep study. I have a mask called ultra, that is the type that was set in the configuration mode of the machine. It has little supports on the forehead and a full chamber that goes on my nose, and other than the marks, it actually is comfortable. My max pressure is 10 and minimum I believe it is 6. I was fit to the ventilator because CPAP did not work for me. After the third sleep study that much was evident. This machine seems to be working in the sense that at least I sleep, the CPAP just kept me awake.

I suspect that it may be an Ultra Mirage Mask. If you have marks on your face, either the mask is badly fitted or the straps or too tight...or a little of both. The UM has a double skin and the mask is inflated by the air pressure from the ventillator. The mask should 'float' on your face with the inflated 'bubble' creating a seal with your face. Straps should be left loosish to allow the mask inflate. also make sure that the top and bottom straps are of equal tension.

Quote:

I don't have any other medical conditions. I am in good health. Actually, it seems my sleep apnea is a product of the size of my bones, too small a frame, The central apnea who knows why I have it?

Are you sure you have a ventillator ? It may be a BiLevel PAP machine or a VPAP ? A full ventillator seems fairly extreme. BiLevel or VPAP are forms of non invasive ventillation and would usually be prescribed for Central Apnoea.........but a full ventillator will actually carry out the breathing function for you.

Quote:

I also think the mask is not well fitted. People look at my face and think I am small or medium size when I am large most of the time. I talked to the company this afternoon and got the impression they just did not want to make another visit. At the end they agreed to come back and leave a larger mask (they offered to mail it) and maybe a nose pillow type. This was after I insisted I did not want to walk around with the red marks on my face. They actually suggested I might have skin that bruises too easily (which I have) and maybe there is nothing to do   They finally said they will come back with some more options but I have to wait for a call to schedule an appointment. They have not called yet, so I am dreading the marks tomorrow morning. It is a bit embarrasing  

Your DME company need to be called to order. If you have an Ultra Mirage Mask, ResMed (the manufacturers) insist that you get a proper fitting. They have a number of 'templates' which are put on your face to determine the correct fitting............not rocket science, but very important. If you have the UM Mask , I suggest that you contact them and demand a correct fitting..........you might mention that you have been told that ResMed recommend this. You should not pay fror any mask until such time as you have been properly fitted.

When they call, make sure that you are satisfied with the fit before allowing them to leave. Try using the mask while lying on your bed etc.

Quote:

I am happy with my doctor, she is a neurologist and she is the third doctor I see about this problem, she seems to have a lot of experience and she feels this machine is right for me. She wrote the prescription for this type of mask, but she also said if it did not work for me, to talk to the company and make sure I got options.

You need to take a hard line with this company. BiLevel, VPAP and Ventillators are quite expensive, with large profit margins..........keep this in mind when talking to them. You are a profitable customer to them.......make sure to let them know, that you know this.

Best of luck.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

lucy do you have the ResMed VPAP Adapt SV  machine? From what you describe that is what it sounds like. It is specifically made for Central apneas and Complex sleep apnea (both centrals and obstructive)  there are a few of us on this forum that use this machine, at least 4 maybe 5 of us give or take a few. Welcome to our little niche of the Sleep Apnea world! I started on the VPAP ASV this past May, it is a Great machine but you will have to give it a little time, my Doc told me to give it at least three months, before noticing any noticeable changes in the fatigue and being tired, and for the most part he was pretty much right, some things changed pretty quickly, my night sweats went away within a few days, getting up all night long to go to the bathroom ended in just a few weeks, some of the other stuff can take a bit longer, but compared to CPAP and BiPAP this machine is a Godsend!! Do you have the newest one? it has a little sticker or label right under the status button that says enhanced. If you have that then you can get all the good data from it AHI and AI  if it is enabled.
 Sounds like your biggest problem is getting the right mask! That can somewhat challenging and might take a little bit of time, but nothing that you can't over come. They make so many masks there is bound to be one that will work just for you! Welcome to the XPAP adventure, and remember patients, it takes time, persistence, just keep using it,perseverance & determination, just don't give up, try try again, attitude , that is everything if you think you can do this then you can! and a big huge dose of Humor, that is what will keep you sane   And of course you know where to come for help and support, and to rant and rave and also vent! We are all here to help one another and give each other support! Good Luck to You


_________________
White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

Oh Thank you so very much! Daniel, I did call my doctor and complained directly to her and she did call the company, is how I got 3 masks all at once to try to my convenience. Where to start? It was an ultra type of mask, and I was not fitted properly, the sores are gone but the dark marks (I do have sensitive skin) are still with me.  They also brought more chin straps, I can't believe they gave the most complicated and cumbersome one instead of giving me the simplest first. I got a simple strap right now that it is working much better for me.

I do have the RedMed VPAP machine, I feel lucky my insurance covers it because out of my pocket I would not have been able to afford it, and it is the enhanced kind, my doctor already told me I need to take it to the first appointment so the data can be uploaded to her computer.

I am using a nasal cradle mask now, optiLife type, set up in the VPAP machine as Vista type, it is working very well, I find it  much less invasive and I can sleep on my side without any issues, I am waking up 2 or 3 times during the night, and I still feel very tired, but I feel that now that I am not so uncomfortable with the mask, I can give myself time and just get used to the machine. Thank you so much White Beard for your kind words, they give me hope. You all know how it is to feel that you can't even drive, I was in tears most days because I felt life could just not be one tired day after the other.

Again, Thank you so much for taking the time to read and reply, I was truly feeling hopeless and feeling that maybe I had to get used to being tired, I am very glad I found this site!