Cpap

[Christina L]

First off, Happy 4th of July!! What a great country we live in. May God continue to guide us.

I had a second sleep study done last night with CPAP titration. I used the nasal pillows/prongs (whatever they are called) instead of the full mask over the nose or the full mask over the mouth and nose. The tech wanted to start with the least hard to get used to device. I did well with it - they left it on all night (didn't sleep soundly but that was to be expected with having that contraption on your face) - only had one hypopnea episode and they turned up the air pressure and that took care of that. I guess I am going to try this type of mask for a while and see how it goes.

I feel somewhat better today - tired, but not in the regular way I usually feel tired. The tech told me I will notice that I will have more energy this afternoon instead of wanting to take a nap as I usually do.

My question - my average heart rate was in the mid 40s during the sleep study. That just seems so low as I am definitely not a trained athlete! The tech told me most people while sleeping have heart rates in the 50s and 60s, but that 40ish was okay.

I am so pleased that I was able to tolerate the CPAP mask. One of the other tecs at the Sleep Lab (a big, burly guy) has been wearing a CPAP for four years - he said he is also a respiratory therapist and knows the dangers of oxygen saturation and stopping breathing at night. He loves his CPAP. I hope that I will, in time, dearly love mine too. Ha.

As for now, it is more of a love/hate relationship. Nancy and Ross, I am trying to have a sense of humor about this and Wayne told me the same thing last night - you have to laugh about these things - what else can you do?

What are some average heartbeats here on VR.com - sleeping and resting? Just curious.

Christina L

 

[Nancy]

Can't remember if it was here that someone imagined herself a fighter pilot while donning her mask. That's a little humor.

Yes, humor will get you through all this stuff. It's all meant to help you, and it will, but it sure can get ridiculous looking sometimes.

You should see all the jokes that go on at the Breast Cancer forum about baldness. And yes, I lost all my hair during chemo. It's back now. But Joe rarely missed any opportunities to say funny things about it, I did too. Some of the women let their kids draw pictures on their heads , and they photographed it too. It was a lousy time in my life, but humor got me through it all. And it will help you as well.

There is almost always a lighter side to what is going on. You may develop a weird sense of humor like we have, who knows??

 

[Ross]

When you can laugh at SOB cartoons, you've been intialized!

 

[Der Biermeister]

Christina - welcome to the HOSE HEAD SOCIETY. Yep ... we have to laugh.

CPAP shouldn't have any effect on your HR - one way or the other. However - what is happening is that you are FINALLY getting into Stage 4 (Delta wave) sleep -- plus also REM. These two stages get murdered with OSA. So - I could be wrong, but I have a feeling your HR is slowing down during Stage 4, just like your brain is.

Oh yes - once you get your energy back, you will come to realize that your CPAP is your best friend.

BTW - if you tire of the nasal devices - try a ResMed ACTIVA mask. Absolutely the most comfortable interface on the market. I should know - I've been a hose-head for 15 years now and tried just about everything.

 

[Christina L]

Oh gee,

Oh gee,

a member of the "hose head" society. I am honored. I know I need to look at my CPAP as my best friend and hopefuly in time will. I truly do look forward to feeling good every day instead of hit and miss. Since wearing the oxygen, that has helped a lot and in fact, the doc told me I could continue with that and not try CPAP, but I know that oxygen does not get rid of apneas totally - it may diminish them.

I also have to remember that countless people wear CPAP - most probably without organic heart problems. It is common amongst adults - don't they say up to 10% of adults have sleep apnea (or something like that). I am just one of the lucky ones (ha) I guess. Gone are the days of my youth....they were good ones....now I need to face getting old with bravery.

Ross and Nancy, I am not quite sure I could ever laugh about a person being short of breath and I certainly hope that I won't be having to laugh at myself any time in the future with this issue. Everything else - I will try to find more humor in. Promise. I truly agree that laughter can be good medicine in the right circumstances.

Christina L

 

[Nancy]

It's not that you are laughing at others, certainly not. It's a sense of humor regarding yourself that's important. Without that sense of humor, things become sad and depressing.

The cartoons drawn by the woman who herself wears oxygen and has PH were her laughing at herself and others who have a similar problem find things they can relate to in her humor and they are laughing WITH her, not AT her.

 

[Christina L]

Nancy -

Nancy -

I realize that people with primary PH have to laugh - personally I don't know how they can, but....I have just read about these young gals who are afflicted suddenly with this nasty disease and it makes me sad. I get sad about these things very easily - especially when seeing a very young person in a wheelchair, or a beautiful young gal walking around on oxygen. It just makes me really, really sad for them. However, they probably are not as sad as me!!

I do understand how humor is very important to get through rough patches in life.

One more time - I would like to know heart rates around here at VR.com - your average while awake and while sleeping!! Just want to know what "normal" is for most.

DerBiermeister - you wear a full face mask evidently. I checked out the web site. I see they have nasal pillows also. They don't look exactly like what they put on me last night. I was told by the tech that I can ask the equipment company about different head gears to try. If the nasal pillows work and keep apneas at bay, I would rather go with them. BTW, he got me up to an 8 air pressure flow. What do you use? The tech said this will be about right for me and that I can get a machine that will slowly titrate the air pressure up as I fall asleep so I won't notice it.

I used the restroom shortly after being hooked up and when I saw myself in the mirror, it was very comical. Sad - - but comical. What can I do? - things have to be taken care of in the way of my health and I made the choice to wear the CPAP, as the pulmonologist said I didn't have to - could just continue with the oxygen.

Hopefully others out there who are on CPAP will have some info/advice for me.

Thanks.

Again, happy 4th all - it is rainy and cold here in Estes Park, Colorado (high in the Rockies) - Wayne and I are going to hunker down in front of the TV and watch the fireworks over New York Harbor.

Chris

 

[MelissaM]

Hey Chris,

My waking pulse (after getting up and getting some bfast) is often around 50. I've never had a measurement while I am aleep, but imagine it is below 50, if my waking-walking-around-pulse is 50.

It steadily climbs during the day, and depending on when I take it, my "resting" pulse during the day can be any where from 64 to 84.

As long as I feel good, I don't worry about it. When sleeping, I'm glad my heart gets its chance to take a snooze and get some R and R. Why should it have to work so hard all of the time?

The slower your heart beats, the more time it has to fill with rich, oxegenated blood and pump it out into the body - a good thing!

Take care,
Melissa

 

[Nan]

Hi Christina, I also welcome you to the world of CPAP! I can't help you with your heart rate as I have a pacemaker and my hr doesn't go below 70 with it. Probably worth a mention to your cardio to make sure s/he agrees it is OK in the 40's at night.
and I second the activa as a great mask. If you need a full face mask the ultra mirage ff has worked for me. But masks are highly individual and what works for one person may not work for another.

Hopefully the CPAP will have you feeling better soon.
there is another site < CPAP.com> where they have a good forum about CPAP...lots of info and lots of humor. You have to scroll down to the bottom of the page to get to the link to the forum.
Take care.

 

[Der Biermeister]

DerBiermeister - you wear a full face mask evidently. I checked out the web site. I see they have nasal pillows also. They don't look exactly like what they put on me last night. I was told by the tech that I can ask the equipment company about different head gears to try. If the nasal pillows work and keep apneas at bay, I would rather go with them. BTW, he got me up to an 8 air pressure flow. What do you use? The tech said this will be about right for me and that I can get a machine that will slowly titrate the air pressure up as I fall asleep so I won't notice it.

Christina - no, my masks just cover my nose. A full-face mask covers nose and mouth. Some of them are designed such that they seal under your chin. Others can seal right under your mouth.

Essentially there are 3 basic types of CPAP interfaces -- the nasal pillows that you are familiar with, the nose masks and the full-face masks.
Nasal pillows can feel great for a night or two, but then some (most?) will begin to irritate the openings of your nasal passages.

Most nose masks require a fairly tight tension on the head gear to maintain a good seal. That is what makes the ACTIVA so unique - it requires almost no tension, and therefore eliminates chafing and strap marks, etc. on your face.
I would suggest this - get BOTH. Many insurance companies will pay for new masks several times a year. Being able to switch off has a lot of benefits. And -- if you stay with CPAP, you'll end up with a lot of masks.

I told you about the basic 3 -- there are weird variations of all of these. So - when you get your prescription for machine and interface, you will be sent to a DME (durable medical equipment) company to get your supplies. Make sure the therapist sits down with you and lets you try on ALL the stuff that is available.
I would also advise you to get a machine that has C-FLEX. Only one company has it (protected by patent) -- Respironics. Their machines are called RemStar. Like RemStar Pro, or the newer Model M. But C-Flex is a must. It is computer controlled to work with your breathing so that it backs off the pressure when you breath in .. and when you breath out. You only have full pressure when you are not breathing. Makes a world of difference in how comfortable the CPAP experience is. Actually it is very soothing. You will also want a HEATED humidifier attachment for the machine as you will need it during dry air conditions of winter.

Almost forgot -- my pressure setting is 12.

The slow titration up is called Ramp. I think every machine has this feature - you can adjust the time in at least 5 min increments up to probably an hour. I personally never use it, as I like to feel the pressure and then have it respond via C-Flex to my breathing. Lack of pressure (as in the early moments of RAMP) make me feel like I am suffocating.

 

[Christina L]

Melissa -

Melissa -

Thanks for telling me what your heart rate is. So you are low also, huh? I know when I was in the doc's office once, the cardio said "great!" when I asked him about my heart rate of 60 there in the office. The nurse seemed a little concerned about it - said it could cause faintness, etc. Do you have any tiredness, etc., from your low heart rate? How is your blood pressure doing?


Nan - thanks for your info on CPAP. You talk very positive about CPAP and that encourages me. I am waiting for a call from the doctor or the medical supply co to see what the next step is. Until then, I am wearing my oxygen at night. I don't know what to think about my heart rate being in the 40s while asleep - especially when the tech said most people have a heart rate in the 60s and 70s while sleeping. Kind of scary.

DB - what can I say - thanks bunches for all your helpful info on CPAP and the different types of masks. I am kind of worried about the nasal pillows as they seemed to pop out of my nose every now and then - I will have to be careful on how I turn, etc. Even now with the oxygen cannula, I sometimes wake up and it is not in my nose. Thanks for telling me about C-Flex. The tech didn't say anything about that, but guess the medical supply co will have all the info on that.

Thanks all - very much!

Christina L

 

[Nan]

Hi Christina,

Re:CPAP, let's hope that you have a good durable medical supply company....but some are better than others.

Many will push a particular machine and don't have much information about other types. You may have to be assertive in your request for c-flex and a heated humidifier. Der Biermiester is 100% correct when he says that it makes a difference in the comfort level....also in your ability to use the CPAP.

I use a auto adjusting CPAP with C-flex and a heated humidifier, a Remstar Auto. My parameters for pressure are set with 10 being the lowest and 14 the highest. The machine senses my need for pressure and will adjust it in between those two settings. Per the readouts, I spend most of my time with the CPAP at a pressure of 10.

I use a full face mask most of the time and when not congested, the Activa. Nasal prongs or pillows can be difficult for some people. See if the DME will let you borrow some other types of masks to try. Trying them is really the only way of knowing what will work for you. If they won't/can't see if your sleep lab can let you borrow some. They have the facilities to properly disinfect masks for different users whereas many DME's do not.

Sleep apnea has a very strong connection to cardiac issues so hopefully you will get your machine soon.

Let us know how you are doing.