Replies to This Discussion

Permalink Reply by Mary Z on October 3, 2010 at 5:41pm

Donna, you may want to call the doctors office tomorrow- I usually have good luck talking with his/her nurse and getting the message relayed. As xxx says, don't despair, there are alternatives and you are far from exhausting the capabilities of your trial machine. A mild sedative may help you relax during the night. If you are using a nasal mask and are finding you are a mouth breather you may need a FFM. But, one thing at a time, If tonight is not better, call the office in the morning. Most of all take it easy on yourself, very few of us found it smooth going from day 1.
Mary Z.

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Permalink Reply by Donna B. on October 4, 2010 at 8:23pm

@Mary Z & xxx,
Ok, so last night I got a 4 full hours on the APAP. Don't know what woke me up but it sure scared me. I ripped off my head gear and leaped out of bed. I have no idea why. I shut the machine off and went back to sleep. I do know that my dreams are vivid but don't think that is what woke me up. Who knows. I will try again tonight.
Is it normal to NOT be able to use the APAP all night in the beginning. I am trying not to get frustrated. I am getting used to the pressure at 11 but I still think it is a bit to high. I had quite a bit of gas this morning. Is that normal too ? I usually do not have that problem.
Donna B.




Mary Z said:

Donna, you may want to call the doctors office tomorrow- I usually have good luck talking with his/her nurse and getting the message relayed. As xxx says, don't despair, there are alternatives and you are far from exhausting the capabilities of your trial machine. A mild sedative may help you relax during the night. If you are using a nasal mask and are finding you are a mouth breather you may need a FFM. But, one thing at a time, If tonight is not better, call the office in the morning. Most of all take it easy on yourself, very few of us found it smooth going from day 1.
Mary Z.

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Permalink Reply by Rooster on October 4, 2010 at 8:35pm

I would not say normal, but it is common to not be able to use CPAP all night when first starting out. Many with this experience find that after some days or even a few weeks they suddenly start using it all night every night.

If you got four hours last night, I think you are well on the way to successfully using it all night. Be patient for a little longer.

Pressure leaking into the stomach and even the intestines is common. This may go away with a little bit of time. If it doesn't we can give some tips on how to prevent most of it.

Which position are you sleeping in?

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Permalink Reply by Mary Z on October 4, 2010 at 8:41pm

Donna, a lot of folks take time to work up to sleeping the whole night with APAP. I would expect your problem with gas to go away in a week or so. You did great last night, just keep at it a little more each night. With APAP I would expect you to have a range of pressures. Is the machine set to a straight pressure of 11?




Donna B. said:

@Mary Z & xxx,
Ok, so last night I got a 4 full hours on the APAP. Don't know what woke me up but it sure scared me. I ripped off my head gear and leaped out of bed. I have no idea why. I shut the machine off and went back to sleep.

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Permalink Reply by 99 on October 4, 2010 at 9:25pm

you sound as if you did fine last night
little baby steps are fine gain your strength slowly do not be in a rush
you are now on the road to staving off the apnea.

the difference between an apap and a cpap is like chalk and cheese
an apap is much more tolarble that is why it is so strongly recommended as a first choice, as it also helps with compliance

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Permalink Reply by Jenny Foerst on October 5, 2010 at 12:29am

I knew you would say this. This is my second doctor, came highly recommended by my migraine neuro, but then I guess he doesn't go to her for sleep apnea. SIGH. So wearisome to always be doctor shopping--can't get adequate care for so many of my conditions. This doctor has OAS herself, which is why the denial is so suprising. Is there some evidence I can arm myself about APAP?

At any rate, I had my second ever sleep study last Friday. Interesting my AHI came down from a year ago--from 82 AHI to 40 AHI, but my pressure was set at 11 still, which I cannot tolerate, so I have it set to 10. This new doctor was willing to have me retested to "look for a lower pressure" since I've had Hashimoto's thyroiditis diagnosed and treated, which often directly affects swelling in the airways. I haven't seen the new doctor yet for the interpretation. If I go back to her at least for closure, I will press her again about the APAP and make good on my threat to leave if I don't get some answers that make sense to me. Well, maybe since my pressure is exactly what it was last year, APAP wouldn't make a lot of difference . . .

Thanks, as always, for the excellent support and knowledge I gain here.



Banyon said:

Jenny Foerst said:

I was surprised at how resistant the doctor was to my getting a decent machine like the S9. She said all they do is blow air and that I don't need it to do more than that. I told her I want something that records events, etc. Also, I think the S9 reduces noise transmission down the hose--right now I have to wear earplugs AND turn on music to get to sleep b/c of the whistling in my head.

I asked for an APAP, but she says they haven't been demonstrated to work like they are supposed to, so she won't prescribe one.

Any suggestions, comments? Help?

Get a new doctor who cares about patients and is not holding on to 20th century technology.

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Permalink Reply by Rooster on October 5, 2010 at 8:40am

Jenny Foerst said:

Is there some evidence I can arm myself about APAP?

Just my way of operating, but I would not argue for an APAP. I would argue for a machine that has full efficacy data capability (all current models also happen to have APAP capability) and optional software. With the software you can optimize your pressure setting (and other things) over many nights under your normal sleeping conditions - your own bed in your own home. Once you find the optimal settings (whether APAP or CPAP), you can continue to monitor the effectiveness of your therapy over years and months. This is important because OSA is progressive for most people.

Here is something I recommend:

Questions to ask about your PSG and Titration Study

1. Did I have any central apneas? How many?

2. Were there any comorbidities? What were they?

3. Did I breathe or leak through my mouth? How often? What do you recommend to prevent it?

4. Did I exhibit Positional Sleep Apnea (PSA)? Was my apnea more severe in one sleeping position as compared to others? Is my pressure requirement higher in one position as compared to others? (Often sleep apnea is more severe when sleeping on the back.)

5. Is there anything else unusual about the results?

6. How will I know my therapy is preventing apneas?

7. I am determined to own a data-capable machine and software to monitor apneas, hypopneas and mask leak. This will allow me to call your office with specific questions if I have problems with the therapy. Will you help me with the appropriate prescription?

In addition to the questions:

1. Get a copy of your PSG. It is your legal right to have one.

2. Get a copy of your CPAP prescription.

3. Make sure the prescription calls for a humidifier with the machine.

http://www.sleepguide.com/profile/Rooster

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Permalink Reply by Rooster on October 5, 2010 at 9:00am

Some comments made in the last twelve hours by some patients on home sleep studies/titration versus in-lab:


I only had a home sleep test. I also had a home titration with a special apap and O2 monitor and some other gadgets. Since it measures what you need when you sleep in your normal position it is the pressure you really want. If you insist on getting a data capable machine you can check yourself how the presure is working for you over several days at the time.
In both tests I slept at least 8 hours. Most people report sleeping only a couple of hours in the fancy sleep labs. I would only go for the sleep lab if my use of cpap was not effective. Then I would want to know what else might be the problem.

-----------------------------------------------------------------------------------------

I absolutely cannot go to sleep with a technician watching me and a million electrodes taped to my body. I probably wouldn't have been a good astronaut. I did a home test and then titrated myself. If your events go way down and you sleep better that's all that matters.

" The times they are a'changin"
http://www.youtube.com/watch?v=nrVZV__w500

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Permalink Reply by yogariffic on October 5, 2010 at 4:07pm

Rooster said:

I would not say normal, but it is common to not be able to use CPAP all night when first starting out. Many with this experience find that after some days or even a few weeks they suddenly start using it all night every night.


I agree with Rooster. I got my CPAP 9 weeks ago yesterday. The CPAP clinician told me to use it a few hours each night until I was used to it because I would tire myself out fighting with it and using it all night. But I wore it the entire night every night. I cussed it every night. I readjusted and readjusted every night. But I wore it.

FInally a month later, I still wasn't seeing any relief. In fact, I was absolutely exhausted during the day. Falling asleep several time a day. My doctor sent me for a daytime sleep study which didn't show anything out of the ordinary.

After all this time, I can finally notice a difference! I sleep the entire night- rather than waking up every few hours. I don't toss and turn and I don't wake up 2 hours too early.

It was a little easier getting up this morning (5:15 am) and I didn't get completely drop-dead sleepy after lunch today.

You just have to stay with it. Yell at it, scream at it. Threaten to bash it with a hammer. But keep using it and you will get used to it.

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Permalink Reply by Donna B. on October 5, 2010 at 6:08pm

@Rooser, I usually start out on my back but will turn on my side before I go to sleep. I try to sleep at an angle on 2 pillows so that my throat doesn't feel like it is closing up. When I do wake up I am always on my side.
Donna B.



Rooster said:

I would not say normal, but it is common to not be able to use CPAP all night when first starting out. Many with this experience find that after some days or even a few weeks they suddenly start using it all night every night.

If you got four hours last night, I think you are well on the way to successfully using it all night. Be patient for a little longer.

Pressure leaking into the stomach and even the intestines is common. This may go away with a little bit of time. If it doesn't we can give some tips on how to prevent most of it.

Which position are you sleeping in?

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