Hopefully a Breakthorough

mbscats · Post by **mbscats** » Sat Jul 29, 2006 5:48 pm

I have now been on my cpap machine for a month. To say the least it has been a terrible experience so far as I have not been able to fall asleep. I would give about 1 hour and if I am not asleep I would take the mask off. Getting up at 5 every morning one can not afford not to sleep. Last night I actually slept for 3 1/2 hours with the mask on. The only reason why I woke up was because my throat was sore. Has anyone experience sore throats? I will say I did have the AC on but the house was not really chilly and had my humidifier on my cpap set at 3. I'm wondering if I need to set the humidifier up higher. Any advice would be greatly appreciated.

Linda3032 · Post by **Linda3032** » Sat Jul 29, 2006 5:57 pm

With the humidifier at 3, you should not be getting a sore throat unless you are mouth breathing.

Sorry, but you need to either tape or get a full face mask to stop mouth breathing. If you don't, your therapy won't work anyway.

You might try the new Hybrid mask. It's a full face mask/nasal pillows combination that appears to work for many mouthbreathers.

I would try the Hybrid before I tried taping.

GoofyUT · Post by **GoofyUT** » Sat Jul 29, 2006 7:23 pm

ResMed humidifiers don't produce a lto of humidity at settings below 4. You might want to try turning your humidifier setting to at least 4 and see what happens before you either start taping your mouth or spring $175 for a new whiz-bang mask.

Just a thought.

Chuck

Sibby · Post by **Sibby** » Sat Jul 29, 2006 7:30 pm

I feel your pain (or drowsiness)

I am scared to death at this point to try to tape my mouth shut, as I am having some claustrophobic issues.

At least we can come in here and get some suggestions and hopefully find out what works for each of us.

MandoJohnny · Post by **MandoJohnny** » Sat Jul 29, 2006 8:31 pm

I agree with Chuck. The ResMed 3Hi humidifier does nothing at 3. I have mine on 5 and it's just about right in an airconditioned house in the summer. In the winter, I expect that I may need to crank it even higher.

As far as mouth breathing and taping, that is a serious issue for some people here and I respect that. But I have to say, reading this message board got me really paranoid about that topic, because it is discussed a lot. I did have dry mouth in the morning and I was still not sleeping well. I was just about ready to start taping or ordering a full face mask, but I thought that I really ought to get some actual facts first.

I asked my doc and he said that I did not have a single instance of mouth breathing during my titration study, which was done with nasal pillows. He said I should have shown at least some sign of it if that's what was happening. I checked my leak numbers and they were good. They should have been high if I were mouth breathing. But I still wondered. So I got my Sony videocam, with the "Nightshot" feature, which is like night vision goggles. I did a three hour video of my face while sleeping. Both the video and the audio did not document even a trace of mouth breathing.

So I could have spent money and wasted time on a "cure" that would not have been a cure, for me, based on the internet version of "Ben Casey Syndrome." In case you don't remember, "Ben Casey" was one of the original doctor shows on TV way back when and it was very popular. When the show was on, after each episode, doctors all over the country started to notice a huge influx of patients coming to them convinced they had the same disease that was on the show.

So I guess what I'm saying is get the facts if you are having a problem. If you don't believe your doc, get one you do believe. This message board is very helpful and there are great people on it. It is especially helpful at solving minor equipment problems, comfort and compliance issues and lay person tracking what is going on the world of sleep medicine, new advances in equipment, etc., as well as moral support. But if you have a serious problem and it sounds like you do, don't try to solve it on an internet message board. Call you doc.

BTW, mine thinks there is a strong indication my problem is restless leg syndrome and we are working on it.

snoozie_suzy · Post by **snoozie_suzy** » Sat Jul 29, 2006 11:17 pm

MandoJohnny wrote:BTW, mine thinks there is a strong indication my problem is restless leg syndrome and we are working on it.

Mando,

I wonder if you could have the "night vision" function of your recorder focused on your legs, maybe without your sheets covering you, and if it would pick up movements that way?

I also wonder if the video cam would pick up every type of mouth breathing. What I mean is, not everyone who mouth breathes has their mouths gaping open. It might be more subtle that the camera might not pick up. For me, my lips wouldn't even open, but the very corner of my mouth on one side, air would hiss out of. I only knew this because it would wake me up and I could feel myself do it. I don't think a camera would catch that because my mouth was still shut.

Suzy

MandoJohnny · Post by **MandoJohnny** » Sun Jul 30, 2006 8:24 am

Suzy:

You make two good points.

I have tried the VTR on my legs, so far with inconclusive results. My legs certainly don't move very much, although I have read of RLS, in some cases, simply being a sensation or a tensing of the legs, without much movement. Also, people's legs to move some at night normally. I need to try it again, sleeping in shorts with no covers, if I can get to sleep that way. Also, one of the limitations of the camera is that the longest I can record is four hours and I have heard that some RLS mainly occurs in the last few hours of a normal night's sleep. I have to figure out a way to record that.

Also, getting away from my "home grown" diagnosis, my sleep study clearly showed a lot of leg movements, both before and during CPAP use. Also, the current medication my doctor has me on for it, Nuerontin, seems to be helping. He is allowing me to "self titrate" with the medication. I try it at a dosage for two weeks. Based on how I feel, I can increase to a certain level for another two weeks, etc. But I will continue with the video, just to learn more.

As to the mouth breathing, the camera also has audio. I did a test before falling asleep, where I did some intentional mouth breathing. I tried to mouth breathe as lightly as possible to show the hardest to detect case. What I found was that it was hard to just mouth breathe a little on CPAP. Once that mouth airway path opened even a little, I got this "whoosh" of air that forced the mouth "path" open all the way and made it hard to actaully breathe at all. It was just air rushing in my nose and out my mouth. Also, the audio picked up the whoosh clearly. So I know a few things:

1. Neither the audio or the video picked up any mouth breathing during my first four hours of sleep.

2. I am not sure that in my individual case I can mouth breathe just a little. I know some people can, but when I try to do it a little, it becomes a lot very quickly. It is startling and I am pretty sure it would wake me up if I were asleep.

3. The sleep study did not show mouth breathing on nasal CPAP.

4. My leak stats are good.

5. I have talked with my sleep doc, who is very good and he said based on the above, I shouldn't worry about mouth breathing. I should concentrate on the RLS.

Could I still be a mouth breather? Sure, I accept that. I don't think sleep medicine is an exact science yet. I am just trying to use what rough science I have available to get all the facts I can. My point above was just that while other people's experiences can give you some leads as to things to check out, it is problematic using other people's actual diagnoses and prescriptions to treat yourself without getting the facts on your own individual condition.

So I am cool with people saying, "This is what happened to me" or suggesting things people might try. I think sometimes people inadvertently cross a line by saying or implying, "You need to do XXX," with regard to medical treatment. That is not advising, that is "amatuer prescribing" and even worse, "amatuer prescribing" with little or no actual data about the patients medical history or symptoms.

GoofyUT · Post by **GoofyUT** » Sun Jul 30, 2006 8:28 am

Right on Johnny!!!!!!!!!!

Now, give me a second to put on my asbestos suit........

Chuck

MandoJohnny · Post by **MandoJohnny** » Sun Jul 30, 2006 10:18 am

Now, give me a second to put on my asbestos suit........

LOL, Chuck. I'm on a lot of message boards, including some that discuss politics. If you haven't noticed, I am pretty opinionated. So I pretty much stay "extra crispy" all the time on line. My wife says the males in my family have emotional "rhino hide." So I say "bring it on." I like it hot.

Linda3032 · Post by **Linda3032** » Sun Jul 30, 2006 1:53 pm

Johnny, I think anyone that comes into a forum to ask a question is smart enough to take all suggestions with several grains of salt.

Is it better to quickly type out a suggestion that might help, or is it better to not respond at all because we haven't got the time to pussy foot around and to type in all the disclaimers?

Geeeeez. Give all of us (both posters and responders) credit for a little bit of common sense.

Did I dot all my i's and cross all my t's?

MandoJohnny · Post by **MandoJohnny** » Sun Jul 30, 2006 2:51 pm

Linda:

I hope you are right. But some of the stuff I read makes me wonder. Besides, it's not the wording or the disclaimers I care about, it's the attitude. I am not talking about the posters here are not trying to be quickly helpful, as you suggest. I am talking about the ones that are trying to be self-appointed, internet sleep medicine experts, the ones who represent thier opinions as established medical fact. I think you get the distinction as well as I do.

Dave, RI · Post by **Dave, RI** » Sun Jul 30, 2006 4:40 pm

MandoJohnny wrote:Linda:

I hope you are right. But some of the stuff I read makes me wonder. Besides, it's not the wording or the disclaimers I care about, it's the attitude. I am not talking about the posters here are not trying to be quickly helpful, as you suggest. I am talking about the ones that are trying to be self-appointed, internet sleep medicine experts, the ones who represent thier opinions as established medical fact. I think you get the distinction as well as I do. ...... even worse, "amatuer (sic) prescribing" with little or no actual data about the patients medical history or symptoms.

LOL. So what are you MJ, the "self-appointed expert on posters' attitudes." Or "even worse, an amateur poster analyzer with little or no actual data about the posters' psychological history or symptoms." LOL

Guest · Post by **Guest** » Sun Jul 30, 2006 4:52 pm

MandoJohnny wrote:I am not talking about the posters here are not trying to be quickly helpful, as you suggest. I am talking about the ones that are trying to be self-appointed, internet sleep medicine experts, the ones who represent thier opinions as established medical fact. I think you get the distinction as well as I do.

Amen to that. On some other threads I just now read there are people who represent their opinions as established fact. Hopefully everyone see through it but it seems like if someone challenges them they get really defensive and testy. That is an attitude I don't like.

MandoJohnny · Post by **MandoJohnny** » Sun Jul 30, 2006 5:28 pm

LOL. So what are you MJ, the "self-appointed expert on posters' attitudes." Or "even worse, an amateur poster analyzer with little or no actual data about the posters' psychological history or symptoms." LOL

Nope. Just an average guy with an observation and an opinion. BTW, I was not aware there was a such thing as a "professional poster analyzer," creating the need for the "amateur" distinction. Is that what you do for a living? Also, I really don't care a bit about any posters' psychological history or symptoms. It is irrelevant to any of the opinions I have expressed. I have no doubt your psychological history and symptoms are pretty interesting, though.

mbscats · Post by **mbscats** » Sun Jul 30, 2006 6:48 pm

Thanks to all for your helpful information. I have to tell you after going through the sleep study and speaking with the people who do the tesing it obvious none of them have apena. The fact that they say oh it should only take you 3 weeks to get accustom to the machine and speak of no other problems leads me to believe this. After reading many posts here there are a number of issues associated with this condition. I do have one question, how is it that many of you are able to check your leak stats. Just another question from a newbie.

Hopefully a Breakthorough

Hopefully a Breakthorough

Humidifcation

Right on!!!