very new cpap user with questions

[jayec]

Hello all,

I am new to the cpap world. I just started this past Saturday July 30th.

I will give everyone a quick rundown as this seems to be helpful in answering these questions.
I did a sleep study that said I needed a cpap machine. I did NOT however go back to the 2nd one to actually get fit for a mask and to see what pressure I should be on because of money reasons.


I have been given a CPAP machine by someone though it is an older model.
It is a ResMed s7 lightweight.
I purchased an Opus 360 nasal pillow mask.
I am 6 foot.
I weigh around 290lbs

I am starting my pressure at 4..ramping up to 10. I have a close family member who is a Respiratory Therapist that suggested the pressure of 10. They are speaking to my wife who is taking notes and monitoring my sleeping behavior until he can do it personally this weekend to adjust the pressure as needed.

My big questions:

1. My mouth is so dry when I wake up in the middle of the night its unreal. Any thoughts on how to combat this?
2. I honestly wake up almost in a panic from the feeling of being able to breath with the nasal pillow on. ( I use the large size ) I tend to wake up around 1 or 2am and then take the mask off for the remainder of the night.
3. Should I have a facemask or just stick with what I purchased in the Opus Nasal Pillow?

The first 2 nights of use...Saturday and Sunday I went to bed around 11 and wore the mask about 3 hours each night before taking it off. Monday night I did the same thing though my wife woke me up at 3 am and told me to put it back on which I did and was able to finish the night with it on till 7am. However, last night I was only able to use it for 90 minutes before waking up in almost terror that I was going to suffocate.

I refuse to give up because I am truly on my last leg. I have not slept in years....have a constant migraine headache along with 5 to 6 other things that are persistent from what I am guessing is just lack of sleep.

Does anyone have any tricks they use that can help with issues?
Thanks in advance for any help

Jaye

[EO_123]

I just started cpap a few days ago as well, so I won't be as much help as other people on this board, but it is nice to meet other people who are new to cpap as well. If you are having difficulty tolerating it, my uneducated guess is that they pressure may be too high. The other question I'm sure someone will ask is does your unit have a humidifier and/or can you get one? From what I'm learning this can make quite a bit of difference when it comes to comfort (for some people) I hope you are able to find something that works for you and get some relief soon!

[ozze_dollar]

With the dry mouth problem...that is caused because you are opening your mouth while you are asleep. This is a common problem. You have got to keep your mouth shut. Some people use tape others use a chinstrap.I have this problem also.

You will get used to the mask over time. I have only been using for 4 months and I am now quite comfortable. I have very brief feelings of terror sometimes but just ignore them.

Good luck with it.

[apneawho]

Hi Jaye,
I am sorry to hear about your trials. I hope things will get better for you soon. I am not sure, but doing this without a titration study might be like playing darts in the dark, especially because you do not have a data capable machine. I hope you can get the appropriate titration study. Is the doctor who ordered your sleep study involved in your care at this time? Maybe he or she can help with all of this. A humidifier helps me with dryness. I also use a chin strap to keep mouth closed while using nasal pillow and I do not wake up dry. I use higher pressure than you and I do not feel the suffocation. Two of my friends swear by full face mask. It is very individual so maybe you should try some other masks. Hopefully the RT in your family can help you with fit. I have heard other more experienced users say to wear your mask while you are awake sitting in bed, watching TV, reading, so you can get accustomed to the feel. Don't give up.

[jabman]

Hi Jayec and welcome,

First it is important that you get a titration to find your pressure it is fairly unique for everyone. Hopefully your friend will be able to help with this.

Second the feeling of suffocation, i believe, comes from a low pressure, that is not to say that you need a higher pressure. The avrage pressure is 11.

third if your mouth is dry chances are you need a chin strap or some other way to keep your mouth closed eater that or a full face mask.

fourth, this can, for a lot of people, take some time getting used to. There can be a lot that goes into it, it is best to have a data capable machine. That is one that will record your leaks, ahi's and other data that can help you understand what is going on with your therapy.
also the right mask can play a big role, a lot of people go through any number of masks before finding one that works for them.

I hope that you don't get so frustrated that you quit. this forum is a great place to come tro for help. Good luck and welcome.

[Emilia]

I would not be starting my pressure at 4... it is too low and most folks feel like they are suffocating. If you can adjust the settings yourself, I'd start the ramp at 6 or 7 and let it rise to 10 or 12. The reason I suggest raising the number is that you say you are awakening in a panic which suggests apneas are occurring and are not being addressed at a pressure of 10. Your dry mouth is definitely from opening your mouth which is also allowing therapy to literally blow out it. If you can remedy the loss of therapy out your mouth, you may get by with a pressure of 10. So... fix the open mouth issue first and keep the pressure at 10. If you continue to awaken in a panic, raise it to 11 and then 12 if necessary.

Many on this forum use painter's tape...the blue one. 2" width seems to be the favorite. Chin straps are also popular, but they don't work for everyone. The only other option would be to get a new mask...either a full face mask or a hybrid mask that has both oral coverage and nasal pillows. But since money is tight, I'd suggest taping first. Do a search on the forum for 'taping' and you'll come up with a gazillion posts on the topic.

Your machine is an oldtimer, for sure, but if it is all you've got for now, you can make it work. Having a RT to consult with is a major plus over trying to do go this alone. However, when you have the funds to do it, I'd suggest getting a fully data capable APAP with which you can self titrate and either run in auto or straight cpap mode. My machine is excellent, and brand new with humidifier included runs $425 out the door. You can also find newer models of the other top brands on Craig's List, cpapauction.com, or secondwindcpap.com

Keep us posted on your progress.... Please take a minute to go up to the User Control Panel (under search, top left) and then to your Profile and then Edit Equipment. Choose your gear from the pull down menus and the choose to show those in TEXT, not pictures. This will put your equipment at the bottom of every post your write automatically, like mine below. Those with the same equipment can help you better than having to constantly ask you what you use!

If your machine is not in the list due to being so old, you can simply add it to the comments area!

[jayec]

Thank you everyone for the posts. It is very encouraging to read other people's issues and successes. Last night was much the same as the other though I did wear the mask longer durations. At least 5 to 6 hours last night before taking it off.
I found my 1st sleep study and while I cannot make sense of all the words or what they mean I thought I would type it out here for those that understand this better. Perhaps you all can suggest a better pressure I can use.
Here are the notes:

A full attended polysomnogram was performed.
PSG Analysis
Lights out time was 10:19pm and lights on time was 5:46am. Total recording time was 447 minutes with total sleep time of 242 minutes for a sleep efficiency of 54%.
Sleep onset occurred after 76 minutes.
Sleep architecture revealed 37 minutes(15%) Stage N1:
175 minutes (72%) of Stage N2.
There was zero Stage N3 Sleep.
REM sleep was represented at 31 minutes (13%) of the study night with a REM latency of 277 minutes.
Sleep disordered respiration was observed with an overall apnea-hypopnea index of 28 events per hour ( 85 per hour supine ) These events consisted of a total of 10 central apneas, 54 obstructive apneas and 45 hypopneas, lasting up to 38 seconds.
Periodic limb movements during sleep were not observed. The EKG summary reveals an average heart rate of 66 beats per minute. Baseline arterial saturation was 95% on the room air with a minimum arterial saturation of 87% recorded during sleep. The patient slept less than 1% of the evening below an arterial saturation of 88%. Mild to Moderate snoring was documented by the attending technologist.

Impression
Jaye demonstrated a delay in sleep onset with reduced sleep efficiency and sleep architecture skewed toward the lighter stages of sleep. Severe obstructive sleep apnea with worsening in the supine sleep posture was observed. Periodic limb movement during sleep were rare.
Spontaneous arousal were frequent at 21 per hour.
The EKG summary was unremarkable for sustained arrhythmia. Mild arterial desaturation was observed associated with sleep disordered respiration.

[jayec]

I understood little of what I just typed out. I have been reading a ton on this but perhaps someone can offer a better pressure reading my sleep study. Or, perhaps a good pasture to put me out too

[apneawho]

Hi Jaye,
Having the first part of your study is good, but I don't think it is any help in suggesting pressures. I think the best way to determine optimal pressures is to sleep with PAP and have data that shows the pressure necessary to suppress the apnea/hypopnea events. Congrats on keeping the mask on 5-6 hrs last night. Were you able to sleep with it on during that time?

[Emilia]

Of course that would be the best.... BUT, the OP doesn't have a data capable machine with which to determine a pressure. Having a RT friend to guide him, will be very helpful, and my suggestions on pressure are not out of line considering the symptoms he outlined. A pressure of 10 is generally considered average.....

[jayec]

Yes I was able to sleep for those 5 to 6 hours with the mask on. And I can say that it is 10am my time and I have not tried to fall asleep yet today. I KNOW this is helping me and I am so excited and happy!!!

Do you all suggest a machine that can do all of these things? Did I read this right where there are some machines that will tell you what you should be at pressure wise?

Also, the masks I have seen that go over the nose, these simply just fit over the nose and nothing is sticking in your nostrils correct? I think that is my big problem, I think where these things stick in my nostrils that it scares me somewhat.
I think maybe a mask would be worth a try.

Money is tight but I feel like I need to try anything. So if you all suggest a better machine that can monitor and adjust levels then I would be all for it.

I want to thank everyone for all there kind words and help. Places like this give me and others hope and support. I am in this for the long haul because as I stated earlier I feel like I am on deaths door. And since I started 5 days ago even with the limited use I can tell I am nowhere near as tired.

[nanwilson]

I have a Respironics Original Comfortgel nasal mask..size medium that you can have. Please pm me is interested.

[Mary Z]

jayec, there are used machines avilable at cpapauction and secondwind. You will need a prescription. Can you afford to see your doc again and explain your financial problems? Perhaps they can give you a cash price or do 1/2 a night for a titration. At the very least he could give you a prescription for an AUTO machine that will help you find your correct pressure. I agree that 4 may be too low of a pressure for you to start with. If you have a humidifier I would turn it up a bit for the dry mouth. There are also Biotene products available in the dental section of the drugstore especially for dry mouth. Gopd luck.

[Pugsy]

Is there anyway your RT friend can get hold of a full data machine just to even try for a short while to see if the pressure is adequate to prevent events and make sure that leaks aren't making what therapy you are getting now ineffective? Can you get your regular family doctor to write a RX for the cpap machine? It doesn't have to be from a sleep doctor. Then perhaps you could pick up a good data machine at the cpapauction. Some good deals there on full data machines. $250 to $300 will get you a late model PR System One machine that is full data with a SD card to make using software easy. The older machines require an expensive smart card reader to use the software.

[jayec]

Thanks again all.

I just got a line on newer cpap machine. I don't know the model yet..but someone is selling one. I will get the model number and post it on here to see if it is a good one.
Thanks again for all the advice!!!