Newb with some ?

DoriC wrote:I'm a bit confused about your RX. Your machine's pressure settings are 4-20 so if your pressure was titrated at 5cms why would you even need EPR=2 which lowers the pressure by one number for each EPR setting. Most people find it difficult to breathe at such a low pressure and you would probably benefit from a higher pressure to eliminate or prevent those events you're having. Keep us posted.

I should be clear that I had a sleep study, but was not titrated. They told me afterwords that my oxygen level only dropped to 86% (88% being acceptable) so they felt that I didn't need cpap during the study.

As far as the PA's RX, I don't know how they came up those numbers, but they don't seem to be working

ozij wrote:For some reason I can't see the images -- I get a frog frozen in an ice-cube with a "Domain Unregistered" caption underneath.

I will re-host the pics

I can see the images just fine.

Ozij they are quite similar to Alex's. Tons of events overlapping and when spread out, still tons of events with a sprinkle of centrals at the end of a grouping.

With no formal titration I am surprised that they set the machine at straight cpap of 5. Maybe they just wanted to give it a short time to see what happened.

Did any of the reports mention being worse in REM sleep or while sleeping on your back?

Whatever the cause, the 5 cm pressure isn't working so best to get it straightened out now.

I have had 2 appointments with the PA overseeing my treatment. I believe face time with him has been less than 20 minutes combined with most of that talking about treatment options besides cpap (in case cpap failed). He did mention something about REM related apneas being 48/hour, but didn't elaborate much. I can ask for more specifics when I see him again in a few weeks.

natethegreat wrote:

DoriC wrote:I'm a bit confused about your RX. Your machine's pressure settings are 4-20 so if your pressure was titrated at 5cms why would you even need EPR=2 which lowers the pressure by one number for each EPR setting. Most people find it difficult to breathe at such a low pressure and you would probably benefit from a higher pressure to eliminate or prevent those events you're having. Keep us posted.

I should be clear that I had a sleep study, but was not titrated. They told me afterwords that my oxygen level only dropped to 86% (88% being acceptable) so they felt that I didn't need cpap during the study.

As far as the PA's RX, I don't know how they came up those numbers, but they don't seem to be working

When I was hospitalized, my 02 levels dropped to 88% and they put me on oxygen. Of course with my dx of Asthma the criteria may have been different. I hope you get this sorted out quickly as you have a good attitude!

Often (depending on sleep study facility) there are certain criteria that has to be met before they put a person on CPAP during the first study. One place might have the 88% desat figure. Others may have a certain number of events per hour. Or a combination of factors. During my initial sleep study I did not meet the 15 event per hour that was the criteria for making it a split study and putting me on the machine despite my having desats to near 70%. I happen to be much worse in REM sleep (52 events per hour) and didn't hit REM soon enough and long enough to still have time to do the titration study because sleep time was so fragmented and short. There wasn't enough time left to do the titration part of the study once I finally got into REM long enough for things to start rocking and rolling. Tech said every time I would slip into REM the events would cause an immediate arousal out of REM before there was a chance to meet their criteria.

Just another reason to explain why sleep studies come with their own limitations and explains why studies don't always get it right. Some people just fall through the cracks for whatever reason.

Just got off the phone with the clinic, they won't adjust my pressure until they review my data. Earliest available appointment is 4/7/11...

While the sleep is slightly better with the cpap equipment, I do believe it could be so much better with a higher pressure.

What can they do/say if I decide to adjust the pressure myself?

-NTG

natethegreat wrote: What can they do/say if I decide to adjust the pressure myself?

Shake their finger at you, and say bad boy. Or tell you that you were right. Some doctors really get all bent out of shape but some embrace a patient that takes a proactive stance.

If you change the pressure one or two nights it will show in the summary numbers if they look closely. Most likely they won't and will only want to maybe see last few nights of data and you could change it back. A change to 6 or 7cm cpap for a night might not even be noticed. As it wouldn't make a huge impact on the summary pressure average. A change to APAP range would be much more noticeable on the reports. Depends on which reports they pull off to look at.

Of course April 7 is not that long.....though I know it seems long time. This has to be your choice and what you are comfortable doing. Is this sleep doctor specialist PA that you will see?

I know what I would do but then I have always been a loose canon. It was obvious that my titrated pressure wasn't cutting it and I just changed it. I had good sound reasons and when I went back for follow up PA agreed with me. If she hadn't agreed, and had thrown a fit.. well, I still would have kept it at my changes because I had documentation that it was better.

Thank you Pugsy, and thank you Nate for rehosting - I see the images now.

With an AHI of 48 in REM and no titration I don't understand why in the world they put you on a set (fixed) pressure of 5 -- unless they have to prove you have apnea for insurance.
Or else, someone forgot to set the machine on Auto from 5 to 20.

Very strange.

Once we realized that this was OUR therapy and when my husband was really struggling, I obtained a little education here,got software, and adjusted pressures myself with the help of the good people here. At our first followup visit the Dr seemed "fascinated" with the data printouts I brought. At that time I had changed pressure settings to auto=11-15 with 90%=12. AHI <3, sleeping a little better. His titration was 13cms. He said I was doing a "good job" but he recommended that I reset his original prescribed settings to 5-18 and "let the auto do it's job". When I said I discovered that my husband seemed disturbed and was aroused by the changing pressures he said "he'll get used to it", "see you in 6months". We never went back and I again just followed the expert advice given here. He now sleeps at cpap=12cms,leaks controlled with a mask that works, AHI<2. Occasionally I reset the machine to auto at a narrow range when something seems amiss or to be sure we've still got the "sweet spot". This didn't all happen overnight and required lots of questions(I still ask), sometimes I still get confused(often), but most of all "patience"(not so easy)! Knowledge is Power!

Thanks for the help everyone! I believe I will try a higher pressure for a few days just to make sure I am doing everything I can. 6-7 cm sounds good for now

I am learning so much, I am very fortunate to have found everyone here. One of the things I have learned is that my S9 assumes a day runs from 12:00 pm - 12:00 pm. This can really make reading the detail data on rescan a p.i.t.a. I work the 3rd shift (11pm - 7am) so I sleep during the 12pm reset. Imagine the frustration of seeing only 3.4 hours of sleep reported when you know you slept for at least 6...

Example:




The LCD on the S9 only shows your most recent session, which in my case is after it resets at 12pm. I don't want to offset the clock settings because it messes with my weekends when I sleep more conventional hours.

Again, thanks for the help and info everyone, it is much appreciated.

-Nate

The time thing is annoying for shift workers. At least on weekend some semblance of continuity.

Are you feeling as bad as that report shows? Those events are coming non stop a good bit of the time. Do you sleep on your side, back or either one?

Please let us know how the pressure change goes.

Hi Nate,They can't say anything, and what if they do. It's not their sleep.
I would send them an email of those screenshots. Also one of a 5 minute view. I would also ask if it was the doctor's intention to set the machine at 5cm straight CPAP.
Also, if you haven't gotten a copy yet, Tell them you want to pick up a copy of the full report with condensed graphs. It's a wealth of information and, you will want to review that before your appointment.

Have you looked at those segments in a 5 minute window? You probably have additional apneas that are under 10 seconds so they aren't reported. That's more time that you are not breathing.

I think Ozij might be right: "Or else, someone forgot to set the machine on Auto from 5 to 20."
Why else would they not have scheduled a titration? Unless you don't have insurance and they are trying to do it cheap, but then they would auto-titrate.... Something is not right.

Yep, RX for straight cpap at 5 cm.

I can't really describe what my feelings about this would be. It wouldn't be nice. The simple fact is that the pressure is not sufficient whether it was a WAG on their part or an error or whatever. Best to try to work with what we do see now and move forward. Wouldn't be the first time that someone fell through the cracks or an error was made and it won't be the last. Let's just be thankful that Nate has a machine that shows this and has the know how to address the problem. Along with the guts to try.

Gonna be trying 7 cmH2o for a couple hours before I go to work tonight, hopefully the data looks better

When I called the clinic they basically blew me off saying that I needed to give the therapy time to work, and to call my DME to go over the operation of the machine and fitting of the mask blah, blah When I persisted, I was asked how I knew I needed more pressure. I told them that the machine has a minimum of 4 cmH2O and my RX was 5. Basically, the machine is running at min setting, along with the fact that I am waking up and noticing that I am not breathing. The response: Well, he's out of office until the 7th