Newbie with lots of questions!

Hi all, I'm new here! I'm so glad this forum exists. I've been trying to soak up all of the information I can and will continue to as I'm about to go through the process many of you have already gone through. Long post ahead!! Please bear with me.

1.) I know different locations vary but how long did the process take from the time you got referred to the time you actually had the CPAP machine in hand? Is there any way to speed this up?

I am moving from the US to the UK in 8 months probably and I'm hoping I can be situated by then. I just got referred but it's an almost 6 week wait just for the initial consultation. I'm calling the place tomorrow to ask if it's at all possible to be seen sooner or be put on a stand by list but I will wait if I have to.

My fatigue is at a point I can't stand anymore and I have no life basically. This is my fault really as I put it off thinking I could lose weight and would never need a machine but I've struggled a lot with that. I also didn't realize sleep apnea was as deadly as it is. I have been told I snore loudly and stop breathing and my fiance and family are afraid I'm going to die. I wake up feeling like I never slept at all. My mouth and eyes are dry and painful, I wake up with a headache and I generally feel like death.

2.) Are there any pointers anyone has for the initial consultation as far as questions I should ask, what I should expect, what makes a good appointment...etc? Am I likely to be poked and prodded or just have a conversation?

I'm really surprised at how thorough the forms they gave me are so far. There were 8 forms just for symptoms and related conditions. In the letter it said to expect the appointment to be an hour.

3.) What should I expect from Medicaid with this? Do they pay part or all? Are there limited choices of machines?

Just from reading here so far and my personality I feel like I definitely need a full data capable machine that I can monitor myself. I'm very hands on with my health.

4.) I'm a mouth breather. Is a full mask the way to go for the best therapy? I saw that with the nasal type masks you can get a chin strap. Do people generally end up with a full mask anyway? What about with the oral masks?

Something comfortable and easy is obviously very appealing to me but I know that mouth breathing presents a problem and I'd also really like to get it right the first time.

5.) Why do I feel like I'm suffocating 5 hours into using a CPAP machine (REMstar Auto Smart CPAP System (P/N: 1007381)?

The above question is what finally pushed me to seek a specialist and I will ask them as well. Basically, my dad has sleep apnea and he had a machine from before he got his new one that he let me use. I was pretty desperate at this point and I was able to get a mask for myself to go with it. I found that everything was fine until about 5 hours in and I suddenly felt like I was suffocating. I don't know if it was some kind of panic attack or the pressure was off but from what I can remember I felt like there was no air at all and/or like I was still gasping for air. I feel like exploring this could help me in the future with finding what will work for me. I fiddled with the pressure settings and it didn't get any better but as I have no idea of what I would need currently I just feel like I need more help with it.

6.) The mask I got for the CPAP machine I tried was a ResMed Quattro FX. It appears to be the right size for me but unlike my dads mask (that was too big) it has a thin/flimsy/flexible cushion part that seems to encourage leaks. It literally flaps sometimes. Are there more solid cushions I can buy for it or is there something else I can add to it to help it seal better? I've tried just making the straps tighter but it ends up really hurting my head and I get a headache from it.

Any general tips for anything related would be welcome also! Thank you so much in advance.

sleepylilbean wrote:6.) The mask I got for the CPAP machine I tried was a ResMed Quattro FX. It appears to be the right size for me but unlike my dads mask (that was too big) it has a thin/flimsy/flexible cushion part that seems to encourage leaks. It literally flaps sometimes. Are there more solid cushions I can buy for it or is there something else I can add to it to help it seal better? I've tried just making the straps tighter but it ends up really hurting my head and I get a headache from it.

Unless the mask cushion was brand new it could simply be that the cushion is old and tired and in need of replacing anyway. These cushions sometimes will last months and months for some people and barely make it a month for others before they get leaky and nothing can seem to be done to fix the leaks (and there are some things that can be done...more on that later).

sleepylilbean wrote:3.) What should I expect from Medicaid with this? Do they pay part or all? Are there limited choices of machines?

Medicaid usually pays all but it depends on the state and there might be a copay involved.
You likely won't have any choice in machine and the DME is likely to want to supply the most basic of machines because they make more money dispensing the lower cost (to them) machines.
Please read this about the full data machines and at least get yourself educated on what machines are better in terms of useful data than others.
https://maskarrayed.wordpress.com/

I hate to say it but often Medicaid users get screwed more than others because of the way medicaid pays and the cpap user doesn't have as much recourse against DMEs that will do the screwing...hopefully the one you end up using won't be that way.

sleepylilbean wrote:1.) I know different locations vary but how long did the process take from the time you got referred to the time you actually had the CPAP machine in hand? Is there any way to speed this up?

Unfortunately this is one of those things that people on Medicaid get screwed on...no one gets in any hurry because Medicaid patients are often treated like the ugly step child.

Is there anyway your finances would allow you to buy a machine privately? I know of some machines that would be full data great machines to use that have little or no hours in the $350 to $600 range.

You need to request copies of your sleep studies...make sure what type of sleep apnea you have and what treatment is advised before buying out of pocket if that is something you want to do.

sleepylilbean wrote:4.) I'm a mouth breather. Is a full mask the way to go for the best therapy? I saw that with the nasal type masks you can get a chin strap. Do people generally end up with a full mask anyway? What about with the oral masks?

Why do you mouth breathe? Is it because of chronic nasal congestion issues that you can't get cleared up enough to use the nose alone?
If you simply cannot adequately use your nose most of the time...get a full face mask of some sort and yes you could look at the oral mask like the Oracle.
Now if the mouth breathing is simply out of habit or just for part of the time and you can normally get the nose cleared up for the bulk of the night...then you might consider a nasal interface mask with chin strap to help keep the mouth shut. I thought I was a mouth breather at night but it was just habit from gasping for air at night because of the apnea events. Took a couple of months but my mouth seemed to learn that it was okay to remain shut...so old habits can be broken.

sleepylilbean wrote:5.) Why do I feel like I'm suffocating 5 hours into using a CPAP machine (REMstar Auto Smart CPAP System (P/N: 1007381)?

No way to really hazard guess here because we have no way to know what's going on after those 5 hours.
It could be any number of things and that's why we talk about machines with full data available...so we can at least look at the software reports to maybe get an idea what might be going on.
How old is this machine you borrowed?
Take a look here and see if you spot the machine or at least one that looks like it.
https://www.cpap.com/cpap-machines/apap-machine.php
Once we know what kind of machine there may be some data available on the machine that might help.

Hello and welcome. I'll take a stab at a few of your questions.

3. Medicaid should pay all. However, their reimbursement rate to the vendor is probably rock bottom so you may have trouble getting the vendor to give you a higher end machine when the reimbursement rate is low. Before getting so far along then reaching another delay, I suggest you contact the DME and ask them exactly what machine they routinely dispense. Give yourself some time to shop around so you know what you are up against. If it comes down to a battle you can't win, keep in mind that while an auto machine can give you a bit more data and options, there are CPAPs that are data capable and I would not feel slighted to have one of those. Just be careful. The names are similar so get exact and full names.

4. Do you mouth breathe during the day also? If your mouth breathing is due to a deviated septum or other causes, you will probably need a full face mask. If your mouth breathing is only when sleeping it may be a response to the sleep apnea, or simply that your jaw goes slack. I was a mouth breather at night. My first several months I used chin straps, mouth tape, denture adhesive between my lips, all trying to avoid a full face mask and eventually was able to train myself to keep my big mouth shut. Some prefer to just go ahead with the full face mask and not have the hassle. Depends on personal need and preference.

5. Since you have not been titrated to know your needs, it's likely the machine was not set to a range of pressures that meets your needs. Some need more pressure during REM, and at 5 hours in I'd have to suspect that could be what you're looking at. If the machine you were using was either starting too low to reach your needs quick enough, or capped off at a pressure less than your maximum need, you could experience the sensation of inadequate air.

Good luck expediting things. I had pretty good luck being available to fill in for a cancellation.

starting from the bottom

http://www.ebay.com/itm/Resmed-S9-Sliml ... 43dc43ec0e

Thank you for the replies. I really appreciate it!

Pugsy wrote:Unless the mask cushion was brand new it could simply be that the cushion is old and tired and in need of replacing anyway.

This is the mask: https://www.cpap.com/productpage/resmed ... dgear.html

I bought the mask new. I think it's just the way the cushion part is made that is bothering me. I like the mask itself so maybe I can keep that one if I can substitute the part and keep further costs down. I don't know if that is possible though. Would I be able to bring that mask to the sleep study or would it be weird that I already had a mask? lol Maybe it wouldn't be allowed for whatever reason.

Pugsy wrote:You likely won't have any choice in machine and the DME is likely to want to supply the most basic of machines because they make more money dispensing the lower cost (to them) machines.

If I could somehow get a doctor to write down a specific model on the prescription would that be honored or should I skip the local DME altogether and just get what I want/need online?

Pugsy wrote:Is there anyway your finances would allow you to buy a machine privately?

It would be difficult but I feel I could buy a machine privately at the price range given. It helps to know ahead of time so I can plan for it. Thank you for the link about the different machines. I think I have a good idea of what I would want now.

Pugsy wrote:Why do you mouth breathe? Is it because of chronic nasal congestion issues that you can't get cleared up enough to use the nose alone?

kteague wrote:4. Do you mouth breathe during the day also?

I do have some allergies and I think one of my nostrils is partially blocked but from reading what you all replied it seems like the mouth breathing could be a habit/sleep apnea thing. I breathe normally when not asleep.

Pugsy wrote:How old is this machine you borrowed?

The machine I'm borrowing is like this one but no C-FLEX: https://www.cpap.com/productpage/respir ... cflex.html

I am unsure of how old that machine is but I feel like it's pretty old as my dad has had his new machine for a while now.

kteague wrote:If the machine you were using was either starting too low to reach your needs quick enough, or capped off at a pressure less than your maximum need, you could experience the sensation of inadequate air.

Thank you for the thoughts on this. I was thinking something along the same lines. It would really be helpful to know what's going on with myself. At least the process is in motion now and I'll find out at some point in the next few months hopefully.

grayghost4 wrote:starting from the bottom
http://www.ebay.com/itm/Resmed-S9-Sliml ... 43dc43ec0e

Thank you, sir! =)

I was able to get the initial consultation moved up to 3 weeks from now.

Thank you very much for all your tips. It's very useful.

Ignore last post - has made 3 this a.m. but no mention of OSA/Cpap.