Mouth-breather Catch-22. Am I screwed?

[klutzo]

Hello all,
I apologize for the length of this,and thank you in advance for reading it. I don't know how to make a complicated story shorter without leaving out pertinent info.

This forum is the reason I am a CPAP user for two years now. Without the advice I got here, I would still have untreated moderate/severe OSA. Because of the help I got here, all has been well for a long time, and I have not needed to come back, until recently I started waking up with my mouth so dry that my tongue sticks to the roof of my mouth. I do not have nasal congestion and when I do, the air pressure usually knocks it right out. I also started falling asleep every afternoon around 4 PM. For some reason, my computer card showed no leaks two months ago, and I had an AHI of .8, which is great. Does mouth-breathing not show up on them?

I spent quite awhile searching older threads here for answers to my problem and did not find one. I am afraid there may not be one, but you guys came through for me before with fab ideas, so I will give it one last try.

Here is the situation:
I have severe fibromyalgia and as a result am so sensitive that I could not stand any mask at all. I also have late-stage Lyme Disease. After only 3 hours, the area of skin being hit by the air in the mask had swollen up, turned red, and was prickling and burning unbearably. This effect kept up for 48 hrs. after I took the mask off. My DME rep told me she had had 3 other people with that problem, all with fibromyalgia, and that my only recourse was to go to nasal pillows. I'd been told I could not use them due to a deviated septum, but they worked and I loved them, except for the rushing of cold air. Someone on this forum told me to get the pillows one size larger, and that worked.....no more cold air...it feels just like normal breathing.

I am a mouth-breather and have been all of my life, in spite of the fact that I naturally press my tongue against my upper palate when I sleep. So, I had to use a chin strap. I have 3 Respironics straps that I alternate and replace often when worn, since I need them tight enough to leave marks. It is hot and I must keep my graying hair long because it would ruin a shorter style, but it seemed to work until a couple of months ago. I tried one other type of strap which worked better, but it had no ear holes and when I took it off, my ears hurt so bad I cried. I don't want to try the Papcap due to living in very hot place and having to get up several times at night to go pee. (Most fibromyaliga patients have mild diabetes insipidus). I also have to get up twice to take meds and stay up until they've worked, so I have to take my head gear off completely. If I keep the headgear on, my nose fills up. I lost a lot of weight while awaiting surgery awhile back, but that did not lessen my apnea. In fact, I am now having apnea when I'm awake and it triggers panic attacks, explaining why I've always had most of my panic attacks in my sleep. I always had hypopnea when awake, which is typical with fibromyalgia, but now I actually forget to breathe. I am not going back to the sleep lab to see if I now have CSA. I've been there 3 times, each time more torturous than the last one. I am a "bad patient" because I am so very ill now, and the technicians get very angry with me because of symptoms I cannot help, like having to get all my wires unhooked to go pee 4 times a night, or having a panic attack that lasts over an hour when they raise the CPAP pressure. I cannot take that abuse again.

When I came back here today, I was surprised to see quite a few people had posted about taping their mouths. When I was last here, I remember only one post on taping, about a man who died when the power cut out while his mouth was taped and he did not wake up. Maybe that turned out to be an urban legend. I hope so. After reading the posts on taping, I did as suggested and tried breathing with my nasal pillows in, my mouth closed, and the machine turned off, to see if it was safe for me to tape. No dice. I got very dizzy in a couple of minutes. We have frequent power failures here in summer and I always wake up, but the feeling of having no air in my lungs is horrible and I cannot rip the headgear off fast enough. I also read that chapstick must be applied so you don't hurt your skin. I am allergic to chapstick and got an awful rash last time I tried to use it. Someone else said to cut a kleenex tissue in the shape of your mouth and tape that on. I have some paper tape and plan to try that tonight, since there is no chance of a storm tonight that could cut the power. But, since the power goes off an average of twice daily here from mid-June through September, that is not a long-term solution.

Does anyone have any ideas for me, other than stopping CPAP and resigning myself to an even earlier death than what Lyme Disease has in store for me? I see no point in using CPAP if I am going to mouth-breathe all night long. But, I've been 100% compliant for 2 yrs. and find I am "addicted" and can't even fall asleep in bed now without the machine. I can fall asleep sitting up at 4 pm, but not at bedtime. I don't know why I've been so compliant, since the only improvement I've had in 3 yrs. is that I fall asleep much faster with CPAP. All of the other wonderful changes my pulmonary doc promised have not occurred.

Any help appreciated. Thanks to all who read this far.

klutzo

[GaryG]

There are plenty of experts here who can help, but it helps if you can update your profile with your machine and mask, settings, etc. As a fellow mouth breather, I'd recommend you look into Hybrid Full Face or other Full Face masks, which cover the mouth. Also, the dryness can be alleviated with a humidifier.

[Pugsy]

Why stop using CPAP? Just because mouth is dry from some mouth breathing? How do you know that you are doing it all night? How do you know if it is seriously impacting your therapy?

I understand your other health issues that impact your choices. In a perfect world you would of course try full face mask but it isn't a perfect world and sometimes we gotta do what we gotta do.

You numbers are good. You report you feel better using the machine?? I would think any numbers of hours with the machine (even if not perfect treatment) would be a better choice than no treatment. No, not ideal therapy but certainly better than no therapy.

Do you happen to have the software to really see what is going on when the mouth may leak?? Maybe the leaks aren't as big as you think. Just a thought..

[BleepingBeauty]

Hi, and welcome back. Sorry to hear you're having problems after three years of treatment.

From the last paragraph you wrote, it sounds like your therapy hasn't been effective at all. If you haven't noticed any improvement in three years, what has your sleep doctor been doing all this time? Do you monitor your therapy with the software for your machine? (Please fill in your User profile so we can better help you.)

You mention checking the card two months ago and seeing no leaks. Have you checked it since then?

With your other health concerns, it sounds like you need more restorative sleep than the average person. So, FWIW, I wouldn't stop CPAP therapy.

I hope you can resolve these issues and start feeling better.

[klutzo]

Sorry I forgot to list what I use. I am not too computer savvy, so I will just type it here.

REMSTAR PRO M SERIES WITH C-FLEX AND HEATED HUMIDIFIER
ENCORE PRO SMARTCARD
THE BREEZE NASAL PILLOWS HEADGEAR
RESPIRONICS PREMIUM CHINSTRAP
PRESSURE SETTING OF 7

To GARY , who mentioned that I should use a full face mask, please go back and read the first part of my post. I wish I could, but I can't.

To PUGSY, I do not feel any better with the CPAP, as I mentioned in the end of my post. I wish I did. To answer your other question, I wake up at least four times per night and every time I have severe cotton mouth. By the time I get up in the morning it is so bad I can't speak until I drink a glass of water. Sometimes I wake up with my mouth slightly open. My mouth was so dry my tongue was white from it, but due to my compromised immunity, I assumed it was thrush and went through 3 courses of drugs for thrush before finally doing a yeast test and finding out that was not the cause.

Thank you all,
klutzo

[klutzo]

Hi Bleeping Beauty,
My husband calls me "Beeping Sleuty", so maybe we are related, lol.

I will try to locate my profile and update it ASAP. Meanwhile I typed the info in the post above.

My sleep doc saw me a couple months ago, looked at my printouts from having the software read and said they were great. He is sorry I have little improvement, but I do have late-stage Lyme, which is progressive and eventually terminal, so he had nothing to offer me. Very few docs in this area know much about Lyme.

I did not want to bug the Sleep Lab Director by asking her to read the card yet again, so soon after she just did it, plus my husband has to take off work without pay to deliver it and to go back and pick it up there, since they open after he usually starts work, and close before he stops work, he is self-employed and I can't drive anymore.

However, it looks like that is what I will have to do (have the sleep lab read the card again). I seem to be spending way too much of the precious time I have left at doctor's offices or dealing with them. I've always wanted to go out of this life on skis with chocolate in my mouth, but looks like I won't get my wish!

Thanks for your input,

klutzo

[Pugsy]

I am sorry I misunderstood your comments. I thought you were mentioning the decent numbers being associated be feeling okay considering all that you have going on. Given your history you pretty much are in a nasty catch 22 but I still think that some hours of decent treatment (your AHI was reported as very decent) is better than no treatment.

But that is me and only you know your own limits the best. You really need to get with whoever manages your care and go over the reports and see what is happening on those reports to have a real idea how much the mouth breathing impacts your therapy and the way you feel.

[jdm2857]

There are electronic power failure alarms that are inexpensive and would awaken you as soon as the power goes off, well before you feel short of air.

Also, you could look into getting a UPS for your xPAP. They're not cheap, but given the frequency of your power interruptions, one would probably be worth it.

[Kiralynx]

Klutzo,

I very nearly lost it at the idea of either taping my mouth (I have bad claustrophobia) or a full face mask (ditto) or the standard chin straps (ditto). So I made my own.

My "brandy keg" is a 4" diameter cylinder of closed-cell foam which I bored a hole through, covered in fleece, and then ran a strap through the hole. It tucks up under my chin and holds my jaw up, but I can shift it readily to one side if I want some water.

With regards to your Lyme, and other issues, have you looked at any alternative treatments? I know a lasy who is being treated for Lyme, and is doing much better.

[BleepingBeauty]

Hi Bleeping Beauty,
My husband calls me "Beeping Sleuty", so maybe we are related, lol.

I always wanted a sister.

My sleep doc saw me a couple months ago, looked at my printouts from having the software read and said they were great. He is sorry I have little improvement, but I do have late-stage Lyme, which is progressive and eventually terminal, so he had nothing to offer me. Very few docs in this area know much about Lyme.

Okay. So, it may be the case that you're getting the most out of your therapy that you can hope for. Or maybe not. (Without more closely monitoring the detailed data your machine produces, it's hard for anyone to say which areas need attention, if any.)

I did not want to bug the Sleep Lab Director by asking her to read the card yet again, so soon after she just did it, plus my husband has to take off work without pay to deliver it and to go back and pick it up there, since they open after he usually starts work, and close before he stops work, he is self-employed and I can't drive anymore.

As I'm sure you know, a lot of forum members have obtained the software and card reader so they can monitor their therapy regularly. But even if you can't afford to obtain those components, surely you can have your card read more frequently than every couple of months, by mail. With two cards, you can mail one and use the other, and so on. If your provider doesn't offer this kind of exchange, perhaps another PAPer nearby who has the equipment can read the card for you. There are ways.

I seem to be spending way too much of the precious time I have left at doctor's offices or dealing with them.

Maybe all the more reason to want the software and the card reader for yourself, so you can take this therapy into your own hands and participate in your care with the help of this forum.

I've always wanted to go out of this life on skis with chocolate in my mouth, but looks like I won't get my wish!

Never say never. It could happen. Keep the faith.

[rise&shiner]

Biotene just came out with a gel for dry mouth that you put on your tongue actually taste pretty good, also try Biotene PBF dry mouth mouthwash, as I found these products were helping me with my dry sahara mouth. I think you are amazing with all that you are going through that you are not giving up. that's important and you areehelping a lot of us on this site. Also have you tried puting your hose in a different position that might also help.

[mdintx]

Have you considered trying the oral mask?

https://www.cpap.com/productpage/fisher ... -mask.html

[BadBreath]

If you are mouth breathing then the therapy is leaking out of your mouth and is the same a not using it at all, and your numbers are not accurate. If your mouth is closed it should not be dry. Solve the mouth breathing problem and then you can trust the numbers and make appropriate pressure adjustments.

Do a site search on "denture strips" or more specifically "Poligrip denture strips". They are a great alternative to taping because the stickiness is strong enough to keep your mouth closed (especially at your pressure) but light enough to open it at will if necessary. Then a light re-wetting with your tongue allows you to reseal and go back to sleep. They only contact your lips, not your facial skin and require no lotion or chapstick. In the morning they wipe off easily with a Kleenex.

Most people find that the oral mask makes your mouth so dry it is unbearable no matter how much Biotene you use.

Lastly, a UPS (uninterruptible power supply) is a great idea if you live where the power is interrupted on a regular basis. A long term one is best. (I use the http://www.xantrex.com/web/id/204/p/1/pt/30/product.asp and it will easily last a night, with just enough alarms to let you know what is going on without keeping you awake all night.)

[ozij]

Mouthleaking compromises therapy in a tricky way -- they are not major, and they don't look like major leaks on the chart; they are well withing the machine's formal ability to compensate -- but nevertheless, that does not happen, since the machine can only handle your airway closures properly when air is not escaping through your mouth. And on some machines, you seem to have good AHI - and yet you're not getting good therapy despite that.

At this point you're probably getting less benefit from your therapy than you could - I know the kind of leaks and dryness you're talking about: they can't be compared to anything in normal living - a tongue stuck to the roof of your mouth can be unbelievably painful. Depending on which part of your report the doc looked at, he may have missed the leaks entirely.

{quote="klutzo"]After reading the posts on taping, I did as suggested and tried breathing with my nasal pillows in, my mouth closed, and the machine turned off, to see if it was safe for me to tape. No dice. I got very dizzy in a couple of minutes. We have frequent power failures here in summer and I always wake up, but the feeling of having no air in my lungs is horrible and I cannot rip the headgear off fast enough[/quote]

There are electronic power failure alarms that are inexpensive and would awaken you as soon as the power goes off, well before you feel short of air.

Also, you could look into getting a UPS for your xPAP. They're not cheap, but given the frequency of your power interruptions, one would probably be worth it.

Very important in your case, and worth it.

Wouldn't it be cheaper to get the software, and track you data yourself instead of you husband having to take off work and driving to the doctor?

I lost a lot of weight while awaiting surgery awhile back, but that did not lessen my apnea. In fact, I am now having apnea when I'm awake and it triggers panic attacks, explaining why I've always had most of my panic attacks in my sleep. I always had hypopnea when awake, which is typical with fibromyalgia, but now I actually forget to breathe.

CPAP is meant for treating obstructive sleep apnea. What you're describing sounds like a wake breathing problem -- is your pulmo aware of that? Has your waking pulse oxygen saturation been checked recently? You don't mention what operation you were waiting for -- could it be bariatric surgery? If so, has anyone ever discussed obesity related hypoventilaton syndrome with you? If your breathing is so badly compromised during the day, perhaps you need respiratory support during the day as well?

O.

[klutzo]

WOW, lots of posts. Than you all so much for your time and thoughtfulness!


PUGSY - I will keep on using the machine for now. Heck, I can't fall asleep without it anymore. I am addicted to CPAP, lol. BTW, I love your Avatar...looks like a major mouth-breather!

JDM2857 - I do wake up right away when the power goes off. I am a very light sleeper, since like most Fibromyalgia patients I have the alpha-delta sleep anomoly, as well as OSA. This causes awake brain waves on top of the deeper sleep waves, so you have one foot in the land of sleep and one in the land of the waking at all times. I did not know they made UPS units for CPAP machines. Thank you. That is a good idea, though not sure I can afford it, but will definitely check it out.

KIRALYNX - Your chin strap sounds very ingenious! I am not sure I'd be able to handle the foam, since I have MCS along with all my other miseries. How do you keep it on...does it tie at the top of your head? Have you thought of marketing it for others like I think Sleep Guy did with PapCap, since it works so well for you?

BLEEPING BEAUTY aka "SIS" - I did not know about card exchange. Great idea. I will call my DME rep, explain my problem, and ask her if that is available.

RISE & SHINER - Thanks very much for the Biotene info! I have my hose well up over my head, running through a velcro loop attached to a plant hanging hook, which I stuck into the shelf over our bed. Once when staying with friends, the best I could do was sling it over the wire cord to a light just a few inches over my head and that worked fine, so I don't think that has much to do with my mouth-breathing. I'm not sure I understand how the height of the hose could affect mouth-breathing, or maybe I misunderstood what you were trying to tell me. If so, please correct me.

MDINTX - I've never heard of this type of machine, thanks! I do take "medications that dry the mouth", which they warn may make the product not work well in the info at the link you provided. My blood pressure pill has a massive drying effect, which only adds to my problem, but it's the only med on the market that works for me. Have you tried this machine or do you know anyone who has? If you tried it, did you have to use the nose plugs too? From the picture, I can't figure out how the strap around the back of the head would ever stay up there

BAD BREATH - thanks. I could not understand how Poligrip would help someone with teeth, but your explanation was very enlightening. Another thing to check out, and I am glad you can open your mouth and remoisten, since I must take meds twice during the night too.

OZIJ - My pulmonary doc knows about it since 24 hours of an Oxygen saturation testing machine is how I ended up in the sleep lab in the first place. Hypopnea is ubiquitous in fibromyalgia patients, 24/7, though many don't realize that is one reason why they are so fatigued. There were two incidents of low oxygen during the test, and when I asked what time they occurred, I informed him that I had still been awake at both those times. Of importance here is that I had already taken my bedtime meds. Due to the severe dominance of the sympathetic side of the nervous system that fibromyalgia causes, most of my drugs supress it, and without them I would have been dead long ago. If you put my drugs into a drug interaction checker, you'll come up with "life-threatening interactions" along the lines of respiratory depresssion. But, without them, I cannot exist. And, I must take more at night or I can't sleep at all, and I mean not at all. I once went 4 nights with zero sleep before I was diagnosed. Sucks, doesn't it? The surgery I was having was gallbladder. 80% of Lyme patients lose their gallbladders. I had to jump through a lot of hoops to get it done, because I could not digest anything bu hot cereal and canned fruit and the docs wanted to know why it was not just fats I was having trouble with. Turned out the gallstones had been backing up into my pancreatic ducts for years and blocking the enzymes from gettng out, so they ate my pancreas. I didn't notice until it got really severe, since I was taking OTC enzymes, as all Lyme patients are told to do, since digestion decreases by 20,000% in Lyme Disease. By the time I got to surgery, I'd lost 35 lbs, and 95% of my pancreas is destroyed. I now have to take over 600 expensive prescription enzymes per month to eat at all, and my life span will be at least 20% less. Doctors, gotta love 'em (Not). Nobody ever discussed obesity-related hypoventilation syndrome with me, probably since hypopnea is so common in fibromyalgia, air hunger can be severe in advanced Lyme due to coinfection with Babesia, and the constant pain of the disease is exhausting. Also the pancreatic problem produces shortness of breath during episodes of abdominal swelling and bacteremia, which I have sometimes now. The problem you mentioned most likely never occurred to the doctors, with so many other causes to choose from. Also, I've found once you have a terminal diagnosis, most doctors act like you're already dead and no longer try to help.

.

It's midnight, an hour past my bedtime, and I have cut a piece of tissue in a mouth shape and am going to try the paper tape over that. I will call my DME rep tomorrow about some of your suggestions, thank you all.

klutzo