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If you had two pieces of advice to give a newbie....

...what would those two pieces be?

A lot of us would really benefit from the been-there, endured-that experience you veterans have to offer us.

AND....

Happy New Year!

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Wow. Thanks for all this advice, TorontoCPAPguy. It's terrific.

I realize that I have to get a cardiologist and check out my heart. That said, my internist wanted to put me on statins a few years ago. I refused, telling him I would make some dietary changes, we could retest, and then see where to go.

The doctor was stunned by how high I raised my HDLs (the "good" cholesterol) from diet alone.  (It rose to over 60.) I kept at it. Next time I saw my internist, I was at 80. Last time my cholesterol was checked, my HDLs were so high (145) that the endocrinologist told me that he had seen only one patient close to my level (hers was 125) and he wondered if I did anything to get my levels so high. "I surely do!" I told him. Next time I saw him, I came in with the detailed list of everything I take, DON'T take, and what I do to keep my HDLs at such a high level.

All that said, I have noticed my heart beating when I climb stairs and once when I fell asleep accidentally (obviously, the apnea kicked in).

So, Mr. TorontoCPAPguy, you may be pleased to know that while I was typing the above, I stopped to call my insurance provider to get a list of cardiologists. I'm making an appointment. Thanks!

As for the mask, I'm happy with the nasal pillows BUT I've been finding that I wake every few hours throughout the night. I guess I'm going to have to get myself a different machine (that "reads"), maybe an oximeter, and then see what's what. Maybe I'll have to go to a FFM. I hope not.

Thank you so much for your two cents plus. They all made a lot sense to this newbie!



TorontoCPAPguy said:

get a machine that records data and the software to go with it so you can see what is happening during the night.  Get a recording pulse oximeter so you can match SpO2 against what goes on all night.

 

Can't do it in two pieces of advice so I will continue:

3.  Get a mask that fits well and is comfy.  I use a Quattro FFM so if my nose plugs up I can carry on sleeping.  I use a Mirage Nose Bag mask when watching TV in the evening if I expect to fall asleep.

 

4.  Take the CPAP/APAP with you wherever you go expecting to sleep overnight.  I spent two weeks in the hospital this past month and the CPAP let me sleep like a log.  The hospital even allowed me to infuse THEIR oxygen into my CPAP line so I sleep well all night.

 

5.  Get educated.  Know what it is that  you have and how to deal with it.

 

6.  Understand that OSA is a prime cause of Atrial Fibrillation - a heart affliction that will cut your quality of life to shreds.  I am back in Normal Sinus Rhythm after years of aFib and feel like a million bucks.  Know that aFib can be well hidden by OSA... similar symptoms.  Get an electrocardiogram read by a cardiologist if you are going to have a sleep study.... not read by a GP or nurse or clerk.... a CARDIOLOGIST!  The newest and best electrocardiogram gear actually prints "ATRIAL FIBRILLATION" across the strip in big red letters.  And if you have aFib get it treated IMMEDIATELY as the longer you wait the worse it gets and the harder it is to fix.

 

7. Forget nasal pillows for your CPAP machine.  They just don't work well and you are going to be disappointed.  THE FULL FACE MASK allows you to roll about and smoosh your face into the pillow without hassle.  Bring the hose up and behind your head (there are gadgets that do that for about $20) so you don't fight with the hose at night.

 

8.  Have your GP test for things like C Reactive Protein, Aldestorone, etc.  A full spread of blood tests on a regular basis.  To make sure that everything is working as it should be.

 

Good luck.

I think historically even docs weren't always aware of sleep apnea and its affects on a person's health. The seriousness of sleep apnea probably has only been recognized in the last 10 years or so. I became suspicious that I was apnic due to exhaustion and the fact that I had a brother and sister already diagnosed with sleep apnea.

When I first asked my doc who keeps himself very up to date and is probably one of the smarttest people I know and who has unfailingly taken good care of me, he went ahead and had me scheduled for one but he'd say things like, I don't why they make you have a sleep study. Just let you buy one if you think you have sleep apnea.

Back in October, he insisted I come in for a check up so he could check my cholesterol, bp, sugar (I'm borderline diabetic and he's worried I'll develop into a full fledged diabetic) Because he knows sleeping is a real issue for me (not only do I have sleep apnea but I'm also a chronic insomniac) he asked me how sleeping was going. I was honest and told him that I felt tired a lot and even after a whole night's sleep, didn't feel rested. I never thought about another study though. I mean, I'd already had one, right? He was the one that said, I think you need another study. Your apnea might just be getting worse.

I was horrified when I found out how much worse! I had gone from someone who did fine for the first 3 or 4 hours and became apnic as my muscles tired out and started closing up. I found out I was apnic all night with frequent hypoxia/apnic events, my oxygen sats ran around 80% for most of the night and that was ON cpap. No telling what I'd be like without cpap. But to me it was interesting that my doc went from being someone who didn't think sleep studies were necessary to insisting that I get another study. Of course, it is good to know that your doc is willing to learn and change how he thinks!

Kristi Halsey said:

I understand your frustration in getting a diagnosis.  I also think I have had some degree of sleep apnea for about 10 years and even went to my doctor and told her this when I was pregnant.  I was jerking awake, gasping for air and she blew me off and told me they didn't test pregnant women.  Imagine my surprise when I actually had the sleep study done and the tech told me they test pregnant women pretty regularly.    Glad that you have finally gotten a diagnosis you can do something with.
 


Just wondering why someone suggested to have the hose to be coming down from above your head - how or what does the help with or prevent, just curious. thnx


Terry Vella said:

Aas previously mentioned, use mask liners and a hoselift or make sure you hose is coming down from above your head.
Jennifer, I started out with it down but was getting tangled and the mask was leaking as soon as I changed to coming from above my head my leaks have decreased dramatically and I never get caught up in it. Everyone recommends that you have it coming from your head and they sell hose lifts specifically designed for it. I made my own or you can hang it over your bed head if you have one. Apart from the tangling the gravity pulls your mask up instead of down.

I used to fight with the hose and knock my mask loose until I got headgear that routed the hose to the top of my head. It depends on how you sleep (on your side, back, and/or stomach) and how much you move at night. I'm a side-sleeper who does turn over (I have Restless Leg Syndrome, which means I sometimes move a lot), but if you spend all night on your back or stomach, a different hose arrangement might work for you.

Stomach sleeping is one of the more difficult positions to deal with, as you need to ensure that you aren't blocking the air-exit from your mask, as that's how you vent the carbon dioxide that you exhale.

Hi!

I've been on CPAP for about two years, so in "CPAP-years" I've been using it a very long time!!

My two pieces of advice are:

1) Give it time

2) Don't give up

I've also got to add a few more:

3) Take charge of your therapy. You care more than any doctor or DME ever will.

4) Try different masks, especially in the beginning. My DME let me try two, and let me keep them both.

5) Ask the sleep study tech if they throw out the supplies you use. If so, ask to take them when the study is done. My sleep center will let me "try" three different masks, and I get to take them all home with me the next morning. I never seem to find the "right" one until I've tried all three :)

6) Make sure to get a full-face mask for those nights when you have a cold. It will probably be the best one to use.

7) Give it time.

8) Don't give up.

9) Yes, I know I already said that, but it's the most important advice!

Thanks for suggesting the full face mask for the times that one has a cold. I've had a bad cold and went back to my Mirage Micro nasal mask for the last two nights. It's not a FFM but comes close. There are things that I really like about the nasal mask as compared to the nasal pillow masks that I switched to.

I had a revelation: Maybe I'll try switching from mask to mask from night to night. I know people tend to find a mask that they really like and stick to IT. But maybe for some it makes sense to switch around.

I appreciate the advice, Andy. And, trust me: I'm not giving up AND I am giving it time.

Andy said:

Hi!

I've been on CPAP for about two years, so in "CPAP-years" I've been using it a very long time!!

My two pieces of advice are:

1) Give it time

2) Don't give up

I've also got to add a few more:

3) Take charge of your therapy. You care more than any doctor or DME ever will.

4) Try different masks, especially in the beginning. My DME let me try two, and let me keep them both.

5) Ask the sleep study tech if they throw out the supplies you use. If so, ask to take them when the study is done. My sleep center will let me "try" three different masks, and I get to take them all home with me the next morning. I never seem to find the "right" one until I've tried all three :)

6) Make sure to get a full-face mask for those nights when you have a cold. It will probably be the best one to use.

7) Give it time.

8) Don't give up.

9) Yes, I know I already said that, but it's the most important advice!

Hi Zolistar:

I have been using the Swift FX, and I really like it. But I also have three other types, and sometimes I'll switch just for a change. It's especially nice to have different ones if you have any irritation, or even a cold.

When I have a cold I sometimes end up with trying all four types until I find one that works (or fall asleep from boredom!)

I will say, though, that since CPAP I've been more energized, have been thinking more clearly (well, at least for me!) and my memory has improved. I enjoy using the CPAP, and my family does too. Both of my children say that my "ritual" of cleaning the gear and filling the humidifier is a signal for them that it's time to sleep, and they are comforted by it.

I haven't missed a single night of CPAP since I started!

I haven't missed a single night since I started either. June 13, 2011 was my first night -- and it was awful. Apart from my less than promising start (and, yes, I've worked at it -- and still work at it), I know that since I'll sleep better, I'm happy to "gear up" for the night.

On the other hand, I'm also afraid -- literally afraid -- of sleeping without my CPAP. My SA is severe and I've heard of three SA-related deaths in the past two months. I will take no, zero, chances sleeping with out my machine given the seriousness of my condition.

Thanks for your contribution, Andy.

Andy said:

Hi Zolistar:

I have been using the Swift FX, and I really like it. But I also have three other types, and sometimes I'll switch just for a change. It's especially nice to have different ones if you have any irritation, or even a cold.

When I have a cold I sometimes end up with trying all four types until I find one that works (or fall asleep from boredom!)

I will say, though, that since CPAP I've been more energized, have been thinking more clearly (well, at least for me!) and my memory has improved. I enjoy using the CPAP, and my family does too. Both of my children say that my "ritual" of cleaning the gear and filling the humidifier is a signal for them that it's time to sleep, and they are comforted by it.

I haven't missed a single night of CPAP since I started!

Both you two make some really god points that all newbies should listen too. Andy's point on 'Take charge of your therapy. You care more than any doctor or DME ever will' is an extremely good point whether it's sleep apnea or any illness.

Terry, I agree.  It makes so much more sense for us to take charge of our therapy because we know how we feel and sleep every day.  Some of check our numbers and keep track of AHI.  The new machines have amazing reporting capabilities.  I still want my doc and DME to be there when I need them, but I think I've learned 90% of what I know about CPAP, the other modalities, tweaking my therapy, and dealing with problems  from the forum.

Mary, I also agree, it would be good if Dr's and DME's suggested to newbies that they use forums like this one and hope2sleep. You learn so moch more than you are ever told. It's all the small stuff that they leave out. I have spoken to both that I go to and have even given them the web addresses for them to visit themselves. I have my review with my Dr next Wednesday and have a lot of questions written down to ask him since I saw him 6 months ago. I don't know about the US, but in Australia they are very difficult to get to see and cost a heap about a third is covered by insurance.

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