Edit again- Sleep doctor visit

[Attagirl70]

Hi everyone,

I am so GLAD I found this forum. I have just recently started my biPAP therapy (almost 2 weeks with my machine). My pressure is set very high (24/20). I am having A LOT of trouble with keeping the mask from leaking once the pressure reaches its max. I have tried readjusting the straps to no avail. Every morning I wake up looking like I have lost a prize fight. My eyes are swollen, the bridge of my nose has a huge (very sore) indentation, and my cheeks feel swollen. As the pressure ramps up (20 minute ramp time) my cheeks become chipmunk cheeks. I wake up with my bottom lip bent over and stuck to the inside of my mouth (not sure how else to explain that one!). I have my humidity set at 5 as recommended by the DME tech. I have tried higher humidity but that makes my chest feel heavy the next day.

I was prescribed the Simplus full face mask but was given the ResMed AirTouch F20 full face mask.

Some concerns I have are:

1. How can I get the mask to get a good seal?
2. How do I stop or prevent the chipmunk cheeks, if that is even possible at such a high pressure?
3. Any cushions I can get to stop my face swelling from the mask being so tight?
4. I seem to only sleep about 2 hours, then wake up wide awake, stay up for about an hour, then head back to bed, is that normal?
5. I feel very strange since using the machine. Is this how I am supposed to feel because I am actually getting "restful" sleep?
6. I get dizzy spells sometimes, is that part of the sleep apnea? I did recently switch from citalopram to sertraline, so it may be that.
7. I feel sick to my stomach after eating or drinking anything, is that part of this as well?

I can't get in to see my sleep doctor until sometime after the first of the year. My family doctor doesn't "deal" with my sleep issues and I have no one else to find out if what I am dealing with is supposed to be happening. Any help/information will be GREATLY appreciated. I tend to have anxiety with anything new and this has me stressed. LOL

Thank you in advance!!

[ragtopcircus]

For perspective, the next time you get a large fast food soft drink, try blowing through the straw with the cup full. That's about the same pressure. I'll bet you can do it without chipmunk cheeks easily.

I haven't tried the Simplus, and I like the F20 AirFit better than the Airtouch. The memory foam of the Airtouch just rolls under for me. Fwiw though, I find that the F20 AirFit will leak if too loose (obviously) OR too tight (not so obvious). There are several companies that make liners for the masks that may help with both comfort and leaks. I have not tried them, but padacheek seems highly regarded.

I can't take SSRIs at all. I've tried several (including both of those I think), and even at doses too low to be effective, I have trouble with ototoxicity. For me, that manifests as seriously aggravating tinnitus, enough to interfere with sleep. Dizziness seems like a possibility also, but I can't say for sure. While Wellbutrin plus an SSRI was effective for me, I had to compromise by dropping the Wellbutrin from 300mg daily (extended release) to 150, and eliminating the SSRI.

I have trouble with waking up every few hours also. 5mg of time release melatonin helps, but does not completely solve the problem. This was happening before CPAP also (due to both apnea and arthritis). It is slowly getting better over time (with CPAP), but is certainly still frustrating.

[Attagirl70]

Thank you for answering! I also have tinnitus and now I'm wondering if it's the SSRI causing it? I may need to talk to my doctor about that. I also have horrible headaches that start out not so bad but by the end of the day the pounding in my ear is almost unbearable. I thought it was my BP, but just went to the doctor and it was fine (on meds for it) and have been checking it at home and it's been okay. So, I have had a CT scan of my head recently, nothing there (just air-haha) so I'm wondering if the headaches are sleep related?

Like everyone else here, I just want to feel good again and be able to do things without falling asleep or having no energy to even get off the couch.

I still am in my 30-day trial mask period so I may speak to the DME guy about trying something else if I can't get the leaks under control, although maybe if he ever gets me the mask that was actually prescribed, it will work better. Do I have to buy from a certain DME supplier for insurance to cover it? Not that they cover much but every little bit helps.

Thanks again!

[Pugsy]

Usually insurance will only cover supplies bought through a supplier that they have contracts with....aka...in network supplier.
You will just have to ask your insurance company if there are other suppliers in your area that they have contracts with.

Do a forum search for "chipmunk cheeks"...it's a common complaint and has been discussed often.
No easy fix though. What happens is air goes up the nose and starts down the airway and takes a premature exit into the oral cavity because the back door is open. Lips are closed so cheeks inflate...hence the chipmunk cheek thing. Annoying for sure.
It's hard to learn how to keep the back door closed though. Tongue placement might help but when we are asleep the tongue gets lazy and drops down and opens that back door.

4. I seem to only sleep about 2 hours, then wake up wide awake, stay up for about an hour, then head back to bed, is that normal?

No, not normal and far from acceptable. Sleep maintenance insomnia...google it.
My first suspect might be the medication though... sertraline...it's a SSRI and they are well known to mess with sleep in various forms.
Google "sleep and SSRI" and you can see what I mean.

Your other various rather odd symptoms...research the sertraline and see if any of those are known side effects.
SSRIs are well know to have all sorts of rather nasty side effects.

[zonker]

3. Any cushions I can get to stop my face swelling from the mask being so tight?

please see karen over at padacheek.com. she might have something to help.

i haven't used her products myself, but she gets big praise from forum members here.

good luck!

[TropicalDiver]

Obtaining the perfect mask -- for me -- was transformative. I felt better. Therapy was easier.

Everyone is different -- and you have higher pressures which makes even pretty decent fits leaky.

Leaks are potentially a problem in two ways. First, if they are large enough they can directly impair treatment. That can be measured using your machine, a SD card, and software (OSCAR) for a PC. Second, if it disturbs your sleep. For example, farting sounds are almost never going to directly impair the treatment. But they will drive you crazy and keep you from being rested (and thus indirectly impact your therapy).

There are major styles of masks (full face, nasal mask, etc.). There are many mask models of each style. And then there are sizes within each model. Use have a full face mask -- the F20 -- with memory foam cushions (it also can come silicone mask). I am assuming the size is appropriate for your face.

Not all masks with fit all faces well -- assuming you have the right size. It is possible that this mask is not the best for you. (I have the same mask and love it -- after a tweak!) You can't fix a bad by simply tightening the straps.

My suggestions:
a) If are able through your DME, try lots of masks (including styles). Under your typical pressure. I can exclude most masks in less than a minute each. Narrow down the list to the "not no" and start thinking about trying them for a bit more time. My DME ended up giving me two masks (and I had to retrun my least favorite within 30 days or be charged)
b) Look on you tube for videos about tightening the straps for your mask. Tighter can make leaks worse (or better) -- it just depends. Try all sorts of adjustments.
c) Look at the anti-leak strap for the F20 from pad-a-cheek. Try moving it around (lower on your head; higher on your head) and see if that helps. (This make my F20 go from OK to awesome).
d) Consider a mask liner. I hate them but they can eliminate the farting sound; and others swear by them. You can make your own to try (or they are made by many companies. There are also various strap pads that can make things more comfortable.
e) Comfort matters. It will ultimately improve your outcomes. Don't be satisfied with the current situation -- but also work to solve the problems (rather than abandoning treatment).

Above all else, do what works for you. A DME rep saying everyone loves this mask means nothing if it fits you poorly. Just because I love your mask does not make it the right choice for everyone.

PS: Humidity is more of a comfort thing as well -- feel free to try more/less (I know you did that a bit).

[Attagirl70]

Thank you for the suggestions. I finally got my Simplus FF mask medium size. I have tried everything I know to get a good seal on this mask and the ResMed Mask I have to no avail. I am extremely exhausted and beyond frustrated with this. I can’t get in to see anyone about anything until “maybe” February.

With the ResMed mask I have to pull the straps very tight to get an “okay” seal but of course that leaves my nose and head very swollen and sore and I wake with a horrible headache.

The Simplus makes the farting sounds no matter what I try.

I am wondering if I need to use a larger size or if I can’t get a good seal because of such high pressure? My DME person didn’t really seem to be bothered by my issues. I have researched online and this forum and tried everything I have read about including ordering straps from padacheek.

Can I order large cushions for the frames I have or will I have to go through my DME supplier?

Thanks in advance for any help.

[zonker]

Thank you for the suggestions. I finally got my Simplus FF mask medium size. I have tried everything I know to get a good seal on this mask and the ResMed Mask I have to no avail.

have you perhaps tried going on youtube and searching for mask fitting videos, with your mask in the search?

[Attagirl70]

Yep, I have watched every video I could find.

[Pugsy]

Can you normally breathe through your nose just fine during the day?
Or do you have chronic nasal congestion that you can't clear up and you are forced to breathe through your mouth.

If your nose is clear most of the time....how about a nasal cushion or nasal pillow mask. They are much easier to keep sealed at any pressure. Less real estate touching the skin and needed to be sealed.

Or did someone tell you that with your pressure needs that you just had to use a full face mask.....which is untrue.

[raisedfist]

In my humble opinion you shouldn't sleep at set pressures based on one night in a lab. Since you have a VAuto, you have the ability to start lower and see where the algorithm wants to take you. It's always easier to start with lower pressures, see what happens, and be more comfortable, and then if you need to increase the pressures, do it slowly so you can acclimate. I personally can't imagine going from sleeping with no mask, to sleeping with 24/20, and thinking things would work out dandy. With data shared here people can help you get to where you need to be. And if by chance 24/20 is actually the right pressures for you, by taking the time to acclimate and slowly increasing over a period of time, you may just become comfortable and accept the therapy that much easier. There is no real cure for sleep apnea, so since we are in this for life, taking a bit of time in the grand scheme is rather harmless.

I also believe that the Simplus seals rather well compared to most of the other FFMs out there. And I don't get painful sores on my nose bridge from the mask. Occasionally I get some red marks (non painful) if the headgear is too tight, but that's mostly due to me not taking the time to properly adjust things.

Just my 2 cents. I'm far from the smartest dude in the room here.

[Attagirl70]

@pugsy - yep, I was told I had to have a FF mask at my pressure settings but after doing a ton of research I have learned I don’t have to. I have always been a mouth breather at night because as soon as I lay down my nose gets congested. Since starting therapy with the humidifier though my nose stays open at night. I have been trying to breathe through my nose at night but I’m finding it hard to keep my mouth shut. I do have straps ordered so hopefully that will help.

@raisedfist - I am locked out of being able to adjust my settings. I haven’t seen the pulmonologist yet and I’m afraid to mess with the settings in case insurance would decide to stop paying if I adjust settings without doctor’s approval. I have read online though how to bypass their password. Since you use the Simplus how do you manage to keep it from making the farting noises and to stay sealed?

I am right at the cutoff for a medium mask as I measured it so I’m wondering if going up a size would be of any benefit.

[zonker]

@pugsy - yep, I was told I had to have a FF mask at my pressure settings but after doing a ton of research I have learned I don’t have to. I have always been a mouth breather at night because as soon as I lay down my nose gets congested. Since starting therapy with the humidifier though my nose stays open at night. I have been trying to breathe through my nose at night but I’m finding it hard to keep my mouth shut. I do have straps ordered so hopefully that will help.

i know you are asking a specific question about mask size. sorry, i can't answer that.

what i would like to suggest to help keep your mouth closed is scuncis rather than"straps". (i take it you mean a chin strap?) scuncis discussed here-

viewtopic/p1089718/viewtopic.php?f=1&t= ... s#p1086296

i've modified jays original just a bit but it's basically the same. using this method plus a firm foam cervical collar has eliminated mouth breathing for me. as you can see in my sig, i use nasal pillows with no problem.

good luck!

[Okie bipap]

The mask farting can be fixed by using a mask liner. If you want to try making one, you can find a pattern at this site:
http://montfordhouse.com/cpap/diy-cotton-mask-liner.pdf

I made my liners out of an old, well used tee shirt my wife told me to get rid of several months prior. I have also used knit paint rags I got at Lowes. Karen at padacheek makes some very nice mask liners.

[raisedfist]

@pugsy - yep, I was told I had to have a FF mask at my pressure settings but after doing a ton of research I have learned I don’t have to. I have always been a mouth breather at night because as soon as I lay down my nose gets congested. Since starting therapy with the humidifier though my nose stays open at night. I have been trying to breathe through my nose at night but I’m finding it hard to keep my mouth shut. I do have straps ordered so hopefully that will help.

@raisedfist - I am locked out of being able to adjust my settings. I haven’t seen the pulmonologist yet and I’m afraid to mess with the settings in case insurance would decide to stop paying if I adjust settings without doctor’s approval. I have read online though how to bypass their password. Since you use the Simplus how do you manage to keep it from making the farting noises and to stay sealed?

I am right at the cutoff for a medium mask as I measured it so I’m wondering if going up a size would be of any benefit.

As far as I know, you are free to do whatever you want with your machine. Insurance only cares about compliance, using the machine for 4 hours or whatever on average in a certain window of time. If a doctor doesn't like that you care about your therapy, they need to be fired by you.

I don't have problems with the seal on the simplus. Assuming it's properly fit, try playing with the headgear to make sure it's snug but not too tight and not too loose. After that, you can try a mask liner. I have a feeling more "normal" pressures will help a bunch as well.

If I were you i'd unlock the clinical menu and take control of your therapy.