About to start with CPAP - advice please!

[amelia76]

Hi all, I am very new to all this - I had a sleep study with CPAP last week and don't yet have the Rx for a machine. But that should be resolved this week. I've been reading the forums for a few days but still have little idea what I should be looking for in machine or mask. I'm hoping that some of you can advise me if I tell you a bit about my situation and needs: -

I have moderate OSA, with snoring; my initial diagnosis was ten years ago but I was unable to tolerate CPAP so I did nothing. Two years after the diagnosis I began using hypnotherapy for the condition, which helped immensely.

A year ago, in my night terrors, I began to kick and thrash out; sometimes I actually leapt right out of bed in my sleep. After two such instances in one night I was so frightened that I asked my doctor to arrange for another sleep study.

I am a mouth breather (the nasal passages get blocked very easily and it is often impossible for me to breathe through my nose). From what I've read here it seems that I should start with a full face mask.

I have a deviated septum, which I hope to get repaired in a few months; my sleep doctor told me that it may not help but I'm going for it anyway.

I also suffer from TMJ syndrome, so want to avoid anything that places too much stress on my jaw.

I will be looking for a fully data capable CPAP machine, ideally one that is lightweight for traveling.

Any tips will be welcome!

[cflame1]

as a TMJ sufferer myself... I tend to try and stay away from masks that have to be so tight that they hurt or they'll leak... and chin straps.

[LinkC]

Great! You know about "data capable"!

IF you can swing it, try to get an Auto-CPAP (APAP) machine. It can be operated in either mode (CPAP or APAP) and if you ever decide to try APAP you'll already have the right machine.

As for masks, it's whatever is comfortable and provides the lowest leak rate. Mainly trial and error. With all your issues, getting the right mask may be frustrating. See if your supplier has any kind of return/exchange program for the one(s) that DON'T work for you.

[Janknitz]

You sound like me when I got this diagnosis. I came up with every excuse in the book and then some about why this was NOT going to work for me. But someone kicked my can and told me that if I wanted to be alive to whine and complain then I better strap that mask on and get used to it. So I did.

I'm not here to say it's easy, or that these problems don't exist, but I am here to say you have to put on your big girl panties and figure it out. All night, every night.

It's wrong to assume that because you are a mouth breather you need a full face mask. Chances are that you are a mouth breather because you're not getting enough air in. With the direct delivery of a nasal mask or nasal pillows, you will get enough air in and you may be able to breathe comfortably through your nose. There are things you can do for the nasal congestion (saline rinses, steroid nasal spray, oral antihistamines), and unless your septum is so deviated that it's impossible to breathe through your nose, that will not be a barrier. Full face masks are the least comfortable and the most leaky, so if you can possibly use a nasal mask or nasal pillows you will be much more comfortable in the long run. So don't rule them out without at least trying.

Be sure to read "what you need to know before you meet your DME" in my signature, and there are hints for using either a full face mask or nasal pillows on my blog too.

Good luck--hang in there, you CAN do it.

[amelia76]

Thanks for the comments to date. LinkC, can you tell me what is the difference between an Auto-CPAP and a CPAP machine?

I intend to stick with this and sort it out, however long it takes! Ten years ago I said CPAP would not work, but now I know it HAS to, so I'm trying to assemble as much info as I can before jumping in to get the gear I need!

[tschultz]

I was recently in the same boat, and am hoping this week to have my final prescription for an Auto-titrating CPAP machine. I had no choice to adjust to the machine after being diagnosed with severe OSA, my AHI was 119 and my oxygen saturation level was dropping to as low as 58% when sleeping. I was suffering the effects of oxygen deprivation but did not know it. At least I have adjusted surprisingly well and am doing great even after only 1 month.

I personally feel that all the machines should be fully data capable and auto-titrating since they can still be used as straight CPAP as well. I won't go into details here, but if you check some of the many other threads by myself or numerous others you will find the reasons.

One thing that I will caution you on however is that being in Ontario (assuming this is the province in Canada) is that our wonderful province has an ADP program that will pay for 75% of the equipment costs. However they have very strict additional requirements for auto-titrating machines vs stright CPAP and you need to be aware of this. Unfortunately these requirements seem to get interpreted in what machine can actually even be sold to you regardless of the actual prescription, even if paying the full price and not wanting ADP's help. There are a few threads which detail this or you can PM me if you want for details.

I have been told that I will be getting an auto-titrating machine based on an additional letter from my sleep doctor but I still don't have the actual approval from ADP so I am still concerned even in my case, one which I have had to fight and push very hard to get as far as I have. I do have a backup plan where I can get the machine I want from the US but I need to try the "correct way" first.

Best of luck, and this is a great place for help.

[DoriC]

Welcome Amelia, a cpap machine can only be set to a straight pressure,usually your titration during your sleep study, while an auto cpap can be set to a range of pressures so you might only need the higher pressure at certain times of the night such as if sleeping on your back or snoring,etc. So you're actually getting two machines in one. Some people find straight pressure is better and some do better with the auto. Read all you can here and ask lots of questions. Good luck.

[robysue]

If you have a TMJ splint, wear it with the CPAP mask. They are fully compatible.

If something gives you problems---report it to the sleep doctor, the DME, and post it here. Do NOT suffer in silence hoping that things will somehow get better on their own. Ask for ideas. Accept suggestions that make sense. Be willing to try suggestions that don't necessarily make sense if they're the only ones offered.

Be persistent. Don't expect an instant miracle. Realize that the benefit of CPAP therapy comes only when you work at making it work for you: Use it every night, all night long.

[amelia76]

Here is a summary of the results from my baseline study 2010/12/20
AHI = 20.7
Sleep efficiency = 77.9%
Lowest SaO2 = 73%. Amount of time spent below 85% = 10.7 minutes
Technician’s comments: Severe positional and REM related SDB. Severe desaturation in supine REM events. Mild intermittent snoring. Mildly fragmented sleep. Sinus rhythm.

My Rx states the following: CPAP pressure 10, mask used in lab: Comfort Gel (XS), C-Flex setting: 1

I will hopefully get a CPAP (or APAP maybe if I'm lucky) machine today and will report back!

[DoriC]

You would be a good candidate for an Apap since you certainly seem to have positional apnea and may only need 10cms when in supine position or REM and may do just as well with a lower pressure when sleeping on your side. That's the case with many people. I hope you can insist on an Apap based on your diagnosis.

[amelia76]

So...for a one month trial I have an M series with C-flex and heated humidifier, comfort gel mask plus an OptiLife nasal pillow. Will see how tonight goes!

[DoriC]

Are you sure it's not the PR System One rather than the M Series which is an older model? And is it an auto? It should be written right on the machine. Keep us posted.

[Pad A Cheek]

I wish you the very best as you begin your adjustment to CPAP. The M series machines came before the PR System One machines, but if this is just a trial and not your final machine it may be a start for you. When you get the machine you will keep, insist on an APAP with data capabilities. These machines can also run as a straight CPAP, but you may appreciate the flexiblility of an APAP machine.

Good luck and welcome to the Hose heads.

Karen

[Big S]

Welcome Amelia. I know you will find helpful advice in this forum. You remind me of myself when you say your nasal passages get blocked very easily and it is often impossible for you to breathe through your nose. After being a cpap user for 3 weeks, I surprisingly discovered my nasal passages opening when the machine was ramping up to my therapy pressure. It consistently happened about halfway up from the starting pressure. This worked in some head positions better than others. I am 61 and had these problems since I was a kid. With cpap I am now able to breathe almost all the time through my nose. I have also kicked an Afrin habit that was 25 years old. Cpap has also made a difference in my awake hours for nose breathing. You could have done nothing to convince me that this might be a possibility before I started. I hope that bigger revelations and healings will occur for you.

[amelia76]

Are you sure it's not the PR System One rather than the M Series which is an older model? And is it an auto? It should be written right on the machine. Keep us posted.

DoriC, My trial machine is a Remstar Auto M series with A Flex. The system I'll be getting in a month is Remstar Pro nasal CPAP system with C-flex (that's what the estimate says).

Here follows my report of the first three nights on CPAP:

Night 1: put the mask on at 11.15, lay rigid in my bed with tense neck and shoulders for two hours, completely unable to relax. I am very sensitive to drafts and my neck and shoulders were cold from the hose and exhalations, but I was unable to arrange the hose any differently and I could not lie on my side. At 1.15 I removed the mask and finally got to sleep about 2.15, sleeping until 7.15.
Day 1: I bought a snuggle hose cover and a Buff to wear around my head and neck. After reading some suggestions on the forum I jury rigged the hose to keep it up above my head. I used two plastic over-the-door hangers, Velcro straps and some lengths of fabric tape to attach the hose to the bedpost and headboard.

Night 2: I wrapped a length of silk fabric around my shoulders and neck as extra protection from any drafts. Before putting on my mask I listened to my hypnotherapy tape. I put the mask on at 22.45 and went to sleep about 23.00, sleeping right through until 3.15 when I had to use the bathroom. Back to sleep around 3.45 and awoke at 8.15! A miracle!

Night 3: I put the mask on at 23.45 but did not attach the hose until I had listened to my hypnotherapy tape. Hose connected at 24.10 and almost straight to sleep. Awake at 4.15 until 4.45 and then slept until 7.30 when I felt drops of moisture falling onto my face. I removed the mask and dozed for another hour.

I assume the drops of moisture are as a result of too high a setting on the humidifier.

I am VERY happy with the way the last 2 nights have gone and look forward to even better sleeps, though I am prepared for set-backs.

How should I dry my gel mask?