National (U.S.) Sleep Clinic Recommendations

[Tom W]

After spending quite a bit of time, money and effort I'm unable to get my AHI down to a reasonable number.

I also have a few other things going on with my sleep and I don't think any of my local doctors are knowledgable enough (or willing) to get to the root of my problems.

You can read about some of it here:

viewtopic.php?f=1&t=77372&st=0&sk=t&sd=a

At this point I'm considering going to one of the National Sleep Centers and would like to hear any experiences (good or bad) that you'd like to share.

Below is some data I've compiled from SleepyHead at my prescribed pressure. I've had 4 sleep studies done at three different local sleep centers over the past 12 years and each of them have determined that 12 cm is 'my' number.



I'm pretty sure I don't have a number and APAP and Bi-PAP have actually proven worse in regards to lowering my AHI so I feel it's time to start over.

[greatunclebill]

4 sleep studies are not wrong. that's something even i would bet on. your number is 12. you say you've used all different machines and use respironics and sleepyhead programs. let's have some good screenshots of nightly results on the machine you are using so somebody can help you. better yet, how about getting and posting the various sleep study results. no matter how many more studies you have, the answer is going to lie between you and your machine.

[Tom W]

[Tom W]

[Tom W]

Still think 12 is my number?

[Tom W]

Latest Bi-PAP titration (May 23, 2012) recommended 8/12 CM setting...

[greatunclebill]

thank you for the quick graphs. lets see you tommorrow in one machine, whichever is easier, in automatic mode. whichever it is, make the upper number 14 and the lower number whatever you can tolerate, 8 0r 10 something like that. we want to see how the pressure goes up and down in automatic mode. so many oa's say the airway is not getting enough pressure. are you able to change to automatic and change pressure?

[Tom W]

Been there, done that....

Bi-PAP at 12/18



APAP at 13-18

[Diablode]

Well, I don't think anyone can argue that you are getting proper treatment with those numbers. Try turning off cflex in auto mode, your problem may have something to do with exhalation.

[kteague]

Excuse me while I scream. AAARRRGGGHHH!!! Well, maybe you've mentioned it elsewhere and I just haven't connected the dots. Please tell me your limb movements are being addressed even if not mentioned on the recommendations. Your sleep study states you have severe PLMS at 66 per hour yet the recommendations do not address this. No matter how effective your cpap therapy may be, if your limb movements aren't addressed you may feel better, but still feel like you've been hit by a train. What is being done about your PLMS?

[chunkyfrog]

Silly me, but there was NO MENTION of sleep position in the report.
Even if events/pressure were the same, regardless of position, that should have been mentioned.
Or am I just a fussbudget?

[Xney]

PLMS at 66/hr is no joke. Did they say how many PLMSs were associated with arousals?

[avi123]

GreatUncleBill, Just a Sec. If Tom has any component of Central Sleep Apnea syndrome, or heart problems, or COPD, then APAP IS COUNTER INDICATED.

[Tom W]

Excuse me while I scream. AAARRRGGGHHH!!! Well, maybe you've mentioned it elsewhere and I just haven't connected the dots. Please tell me your limb movements are being addressed even if not mentioned on the recommendations. Your sleep study states you have severe PLMS at 66 per hour yet the recommendations do not address this. No matter how effective your cpap therapy may be, if your limb movements aren't addressed you may feel better, but still feel like you've been hit by a train. What is being done about your PLMS?

Thank you for bringing this up, I had no idea it could effect my sleep so much.

My previous doctor did try to address this briefly by prescribing REQUIP. It took about 4 weeks to get up to the recommended dosage but after 6 weeks total I was having severe side effects and after talking with him I discontinued its use. He suggested this about 10 months after the sleep study and after the REQUIP failed he never suggested another medication. I left him about 3 months after I stopped taking the REQUIP. I really didn't notice any changes sleep wise while taking the REQUIP.

I did give a copy of this report to my new doctor with my new patient paperwork. He hasn't mentioned anything about PLMS being an issue.

I asked him to go over my last sleep study with me but he just responded that there wasn't anything out of the ordinary in it. I've been repeatedly asking for a copy during visits but he hasn't provided me with one yet. I made another request in writing a few weeks ago but still haven't received one.

[Tom W]

Silly me, but there was NO MENTION of sleep position in the report.
Even if events/pressure were the same, regardless of position, that should have been mentioned.
Or am I just a fussbudget?

I'm hoping my latest (05-12)sleep study has more detailed information in it but I still haven't received a copy of it from my doctor yet.