Encore report...when < 5 AHI is not enough

Beware, I just wrote another novel, sorry so long but wanted to explain things as best I could.
Just wanted to share another little quirk that I have found relating to myself that might ring a bell with someone else.
We hear about AHI less than 5 being the gold standard for therapy results and I just imagine that for many people it is quite sufficient but if you happen to be one of those people who continually get AHI's in 4-5 ranges and still have headaches, other symptoms, or do not notice any improvement, you may need a smaller goal.

Short history for newbies not aware of my previous posts. I am a newbie myself. Initial sleep study showed 11 events per hour in non-REM sleep and 53 events per hour in REM sleep. Oxygen level went down to 73% and averaged in the mid 80%. My initial recommended pressure setting was 8 cm. I am much worse in REM sleep and this is quite common, not a rarity at all. Our muscles relax more in REM sleep so stand to reason the airway muscles also relax and obstruct more. I will not see the full sleep study results and get copies till mid August.

I have changed my original prescribed pressure of 8 cm CPAP (giving me AHI's in the 8-9 range) to APAP 10 min/20 max and it has been this way for a little over 3 weeks. I have had a handful of nights were my AHI was below 3 and with those results I am headache free and feel much better the next day. I have had even smaller handful of nights less than 1 AHI and I feel remarkable on those days. The majority of my nights look like this graph below. In the 4-5 AHI range and again I woke up this morning with my usual sleep apnea headache that goes away in an hour or so.

I tend to have little "clusters" of apnea events and they appear within a time frame where my sleep cycle is likely in REM. Always majority being AI's and much fewer Hyponeas. I don't have an oximeter to judge oxygen desats during these clusters but I would bet money that I desat significantly, hence the headaches. Ozij and I have discussed finding a minimum pressure where I prevent these "clusters". The machine can't seem to respond quick enough to prevent at the 10 cm setting. So last night I increased the minimum pressure to 11cm and will leave it that way for a few days to how things go. If this trend continues I will likely have to increase it a bit more. I don't use the ramp and CFlex is off. The pressure variations during the night do not affect my sleep at all. I never notice them. I don't have any history of centrals and since the machine won't go higher than is needed, I am quite happy with the 20 maximum because when I initially had it at 12 cm, I was maxing out often and allowing too many events. I slept very well last night and didn't have to get up to pee. So while last night's result is good, it could be better because I still had the usual headache today. I have found that along with the headache comes the GERD symptoms during the day. No headache days have given me zero GERD symptoms.

Results below is with using my Swift LT for her nasal pillows and a sweatband used as a chin strap. Leaks are very minimal and snores also minimal so I don't think my pressure increases were chasing ghost events. I do believe they were real. This is why the software is priceless to me. If I didn't have it I would be sitting here wondering why I still had symptoms despite the attained < 5 AHI.

So... while we look at numbers we also have to look at how we feel. I wish I felt remarkably better with this AHI but I don't. I am going to need a lower AHI.
So... for those of you that attain the < 5 AHI and feel much better, that is wonderful. Count your blessings.
For those of you that don't feel so hot, haven't noticed any change with decent AHI's, you need to first evaluate your leak rate. You really need the software to see what happened. And yes, the overall leak rate can give a false sense of being good. One large leak might allow enough events to make you feel like crap but the overall average might not be so bad because you had enough "good" rate hours to offset the large leak. I have seen this very thing often with my own data. Last night's data just happens to have a nice flat leak rate.

Here is last night's data. Almost 6 hours of therapy. Pretty good since I took a Sudafed last night to help with nasal congestion and it does tend to wire me up.

That Sudafed may throw everything off but it looks to me, as if you still need a higher minimum pressure.

I know this is only the first night at a minimum of 11 cm for you but your pressure does go up a lot and several times after the first hour and then you have clusters of apneas and some hypopneas. Of course you see that too. It is certainly not leak related.

I am like you. I need to have an AHI below 1 to avoid morning headaches ,etc.

It could be the Sudafed since you said it wires you. I take a Claritin every day for seasonal allergies but I won't take it past 12 noon. It is a 24 hour non-drowsy formula and does not seem to affect my sleep.

Do you take a Sudafed often? If you don't, it would be interesting to compare the nights with it as opposed to the nights without it.

As you said, this is only 1 night but it looks like you will be upping that minimum again, unless the Sudafed is affecting your sleep that much.

Sudafed is/was only last night one time drastic measure to help with the congestion I have had last few days.
It is not something that I normally take and certainly never at night. None of my other results which are/were similar to last nights had Sudafed as a factor. Normally I do not need any decongestant. I seem to be having some CPAP therapy nasal mucosal dryness issues last 3 days. I am working on that but I think they are unrelated to my clusters as the congestion has just now reared its ugly head. The congestion is much improved today.

Yes, likely the bump up to 11 cm won't be enough, but on the off chance last night was a fluke I will give it a couple more nights to see where the numbers go and how I feel.

I slept very well last night. I used the sweatband chin strap on top of my head gear and may have stumbled on an excellent way to stabilize the head gear and nasal pillows. The leak rate was great and I didn't wake up having to re-adjust the head gear or pillows. Always before I put it on under the head gear. I don't remember waking at all which is highly unusual for me. Except for the morning headache which went away fairly quickly, I feel pretty decent this morning.

Let me say I think you've got a good understanding and the right approach. You seem pretty logical and will get there soon.

Like you I don't feel good unless my AHI + FL's < 1
So when I started at 17cm with uncontrolled leaks (FFM= FP431) and my AHI=1.5 my then sleep doc didn't see anything wrong. Told me just tighten my mask and keep going.

I managed another PSG and while waiting for those results borrowed my dads bipap and set it to auto. When the DME called to say he had the order from another doc to set my pressure to 18cm - I told him don't bother. Don't even bother coming over.

I am no doctor but I know if I can't exhale at 17cm I will NOT be able to exhale at 18cm. Ya think?

Meanwhile after gathering about 4 weeks of data, I printed out the Encore charts for my next visit to another sleep doc who had been trying to help with the leaks. She agreed and ordered the bipap for me. It appears I was having troubles exhaling and this was known since my 1st PSG but I guess it's a game you have to play with some insurances.

The rest is Hx. Not that you need a bipap or are having troubles exhaling at your pressure. But I do feel the difference if my AHI goes over 1.

btw - other things
1. Sudafed WILL raise your BP as will other OTC nasal sprays - just fwiw
2. If you file a written request for your PSG - you should get it within 30days according to http://www.hipaa.org
Meaning you shouldn't have to wait until Aug. This way can have your Q?'s answer at the next appt.

ps. I love that avatar.

GumbyCT wrote:1. Sudafed WILL raise your BP as will other OTC nasal sprays - just fwiw
2. If you file a written request for your PSG - you should get it within 30days according to http://www.hipaa.org

I did not know about the 30 day thing, hope they don't mess with me much about that. I hadn't pushed about the follow up because I felt like I was doing at least as good on my own and probably better.
They offered sooner than Aug appt (to do the insurance compliance download) if I wanted to drive to the city instead of seeing doctor at the local satellite office but since I bought my own machine I told them it didn't matter. (Bought from individual, out of pocket actually a little less than with insurance)

Yes, Sudafed does significantly raise my BP, one of the reasons I avoid it unless I just have to use it. It and the OTC sprays are delegated for emergency use only. Been there and done that with the Afrin rebound, don't want to go through that withdrawal again. I can blow through the congestion with the pressure but last night the itching was just driving me crazy. I knew I wouldn't sleep with the itching or maybe not sleep with the sudafed. I opted for the maybe.

So far this morning no congestion at all. Yesterday was awful all day, thought I had concrete blocks in there. I am quite sure this congestion, itching, etc has been related to the APAP pressure drying the nasal mucosa. I don't normally have allergy symptoms of this magnitude. Hopefully the worst is over.

Pugsie,
I am a complete newb on the forum and to OSA, with just 7 nights on the blower and only just yesterday found out from a poster here how to show leak and AHI data on the screen (very annoying that this wasn't already set up). Where would I be (already) without this forum?
[rhet.]

My initial overnight eval showed AHI 17.5, of which 11.5 was in non-REM and 45.5 was in REM (shock!), so I'm much like you in this it seems. Also, I had severe desats almost exclusively in REM, down to 6.9 at the extreme - ouch. All this and I was resisting getting the blasted evaluation because I was so darned sure I didn't have OSA; I only got the eval done because my GI doc recommended it (respiratory depression when put under with i.v. fentanyl + Midazolam for colonoscopy) and the FAA Medical people insisted on it (to let me continue to fly a light aircraft) when they saw his report.

Imagine my surprise .....

I didn't have another overnight session, just went straight on the APAP set wide open (4 to 16). After I figured out how to view the data on the screen, I now know that my averages over the first 6 nights were as follows: 90% press. 7.1, AHI 6.5, Leak 41. My first 1-night reading (last night) was 90% press.8.0, AHI 5.5, Leak 27.5. I'll keep taking them of course and will learn more before I see the doc and get the full data set.

I knew there was some leaking going on but I've jiggered the nasal cushion and mostly have that licked I think (but it's hard to tell without the real data of course). 27.5 is about where it should be on the graph. I feel that AHI of 5.5 is still too high but I'm speculating of course without other data including O2 levels.

Comments:
Symptomatic improvement was wonderful the first few days (night sweats gone completely, morning headache gone completely, less nocturia, started remembering vivid dreams again, much more energy altogether, better concentration/focus etc .....) but I still notice occasional mild headaches and feel that I need to get the AHI lower. I suspect that I'm still having some O2 drops esp. in REM, it's clearly where I run into problems.

I haven't even seen the sleep doc yet since going on the machine (see him in 2 weeks to review the data) so maybe I'm getting ahead of myself but I'm planning to get the card reader + software and probably a recording oximeter as well because of the hypoxia. I'm a translational research scientist in pharma so analyzing data is what I do all day - might as well look at some of my own for a change ..

I know I've had this condition for years (off and on) looking back on it, and feel like an idiot for not thinking of OSA as a possible explanation for my symptoms. It's in the family but I'm not overweight and never used to wake up with breathing problems ..... I know I know, don't tell me. So far in denial was I when I first visited my sleep doc that I openly told him I don't have the symptoms and was only in his office because of FAA's insistence - I was that sure I was a false positive in the i.v. sedation "test".

*smilie with egg on face here*

The irony is that I spend much of my time evaluating biomarker data (anticancer drug development) to see how well the numbers predict clinical outcome (time to tumor progression, overall survival, best overall tumor response, etc), and analyze data using ROC curves and contingency tables to come up with positive and negative predictive values, test sensitivity, test specificity, accuracy and Fisher's exact p values. Bit of a joke really, but I don't care coz I feel soooo much better.

Pneumonym, great progress!

Pugsie, keep on posting this info, I'm learning fast as I can ... I so look forward to a full-data capable device!

Pugsie,

Something nasty happened just before and especially just after the two-hour mark. Any idea what it was?

Your leak rate held at a good level. Any chance you have positional sleep apnea and rolled onto your back about there?

Except for that one period your therapy looks great.

Regards,

rooster wrote:Something nasty happened just before and especially just after the two-hour mark. Any idea what it was?

Your leak rate held at a good level. Any chance you have positional sleep apnea and rolled onto your back about there?

Rooster, I have lots of nights where I show those nasty little clusters about 2 hours into therapy and sometimes a second time about 3-4 hours later. Here is last night's example. My leak rate wasn't anything to crow about but still not so terrible. I do know (from the first sleep study) that I have long REM latency and I know that in non REM sleep I only had 11 events per hour but in REM (when I finally got there) I started kicking serious butt with 53 events per hour. Desats to 73%. I think these are REM stage events. I could very well be rolling over onto my back but I don't think they are strictly positional events. On my list of things to do is find something that will keep me on my side. Also on my list is to finish the Hybrid mask trial.

Before I increased my pressure I had many more of these clusters (sometimes nearly a straight green line) at this 2 hour window (usually lasting 45 min to an hour). So I am thinking I need to increase my minimum maybe just a wee bit more to better prevent the clusters. The random sole events don't seem to hurt me but those clusters are problematic. When I have them, I don't feel my best.

Also in typical OSA form, I have other sleep related issues that need to be addressed. Poor sleep architecture, sleep efficiency of 44 % on the titration study. They marked it up to "first night" nerves on CPAP but it really was the norm for me. Some back and neck pain issues which I have mentioned in another thread do affect my sleep. I simply cannot stay in one position for extended periods of time because of pain without some serious pain meds and we don't want to go down that road. Ambien puts me just deep enough that I don't wake up with each toss and turn but I still toss and turn. So I have lots of things to address on my "to do" list to work on.

So here was last night's data. No headache this morning. Busy day, my grandson has been with me for 3 weeks and we had to put him on the plane today. I am tired but considering short nights lately, not too bad.

I would suppose that even if these clusters have some positional components it simply gives me another justification for APAP instead of CPAP. I wish I could stay in your often recommended Falcon position. I start out in it but always have to move.

BTW I don't have my full sleep study results to look at yet. I do have the titration short report though.
No ambien last night, so tossed and turned and woke up more.

Pneumonym wrote:I feel that AHI of 5.5 is still too high but I'm speculating of course without other data including O2 levels.

Comments:
Symptomatic improvement was wonderful the first few days (night sweats gone completely, morning headache gone completely, less nocturia, started remembering vivid dreams again, much more energy altogether, better concentration/focus etc .....) but I still notice occasional mild headaches and feel that I need to get the AHI lower. I suspect that I'm still having some O2 drops esp. in REM, it's clearly where I run into problems.

I feel crappy at AHI of 5.5. It usually means I have had a couple of my "cluster" episodes. I sent you a PM with a link to my first Encore report where these clusters are discussed and most likely REM stage related.
When I get some extra money I plan to get a pulse oximeter that will let me check my overnight O2 levels. Just want it to satisfy a curiosity in my mind. With AHI less that 4, I don't usually have a headache. I have had a handful of nights with less that 1 AHI, oh boy, I felt like I was 20 yrs old again.

I think that every sleep apnea patient will have individual "what is best for them" numbers. I also don't dwell on one night being 3.5 or 4.2 or 2.1. or 0.6 or 5.9. I make a mental note and correlate it to how I feel and do I have excuse for maybe a bad night. Big leak let in a bunch of events?? Mouth fall open and maybe lose a bit of air??
Was the machine chasing snores?? Whatever the reason, I just then move on. I can't have a perfect night every night. Even a crappy night on the machine is still better than pre-CPAP therapy.

Welcome to the forum. Lots of wonderful people here always willing to help in some way. Let me know if I can help you in some way.

Brenda

Brenda.....

You're on the right track by planning to purchase a recording Oximeter. It's the only way you'll REALLY know how you're doing.

I was surprised to find....four days ago.....that my AHI scores of 0.0, 0.2, and other instances below 1.0 were "fooling" me....and giving me a false sense of success.

My blood pressure started creeping back up......I began needing to pee in the middle of the night......so, I strapped on my oximeter and ran a test.

I was shocked to find that on a night with an AHI of 0.0, my O2 was below where it should have been....for half the night.

I had my low pressure set on 9.5-cm and high on 14-cm. I thought everything was perfect....but, I was wrong.

Evidently, I'm a very lazy breather....and I have instances of "flow limitations".....not many....just a few every night. I think my breathing is so lazy.....so shallow.....that I fool the machine into thinking everything is "OK".

When I began to figure this out, I bumped my low pressure setting up 1-cm......ran another Oximeter test....got a 0.3 AHI score....and brought my O2 up where it should be except for about 12% of the night.

Last night, I bumped the pressure up another 1/2-cm (now set on 11-cm)....and raised the high end to 16-cm......and I did even better. These last two days, I've felt much better......my B/P is down......and the urge to pee in the middle of the night is gone.

So, your idea that an AHI of 5.0 is not good enough....is "dead-on-correct". That's what I'm finding. Get yourself an Oximeter....I love mine....got it from Turnermedical.com ....over a year ago.....and I've not regretted my purchase for even one minute.

Gerald

your clusters and numbers are very similar to mine when I don't wear something to keep me off my back....except your pressure isn't rising as high as mine does when I have the clusters.

Gerald wrote:So, your idea that an AHI of 5.0 is not good enough....is "dead-on-correct". That's what I'm finding. Get yourself an Oximeter....I love mine....got it from Turnermedical.com ....over a year ago.....and I've not regretted my purchase for even one minute.

Thanks Gerald,
The Oximeter is also on my to do list. Now to go find that money tree....

Regarding that magical "< 5 AHI", I think that the medical community had to have some sort of line in the sand for clinical diagnosis so they incorporated that number into adequate (or should be adequate) treatment numbers.
One size fits all type of thinking and we all know that never works.

It is a decent place to start but doesn't work for everyone because we are all different. For me the actual number isn't nearly as important as how effective the therapy has been and I already know that I can have some really good days. I am greedy and I want more of those.

I can't help but wonder how many others have "settled" for "my AHI is 4.2 and that is supposed to be okay but I don't feel better and my doc says give it time" "It's been 3 months and I get good numbers but don't see any difference" "everyone says it just takes time". Hmmmmm. I would buy that only after I had done a huge amount of detective work to insure that events weren't still creating havoc. In my case I know that the "clusters" are affecting the way I feel. Easily spotted but only with the software. Overall averages might be okay but that hour where I might have 10-15 events really messes my body up. I can't be the only one in the world that this happens to.

I am increasing my pressure 0.5 tonight to 11.5 minimum. See what happens.

Pugsy wrote:

Gerald wrote:So, your idea that an AHI of 5.0 is not good enough....is "dead-on-correct". That's what I'm finding. Get yourself an Oximeter....I love mine....got it from Turnermedical.com ....over a year ago.....and I've not regretted my purchase for even one minute.

Thanks Gerald,
The Oximeter is also on my to do list. Now to go find that money tree....

Regarding that magical "< 5 AHI", I think that the medical community had to have some sort of line in the sand for clinical diagnosis so they incorporated that number into adequate (or should be adequate) treatment numbers.
One size fits all type of thinking and we all know that never works.

It is a decent place to start but doesn't work for everyone because we are all different. For me the actual number isn't nearly as important as how effective the therapy has been and I already know that I can have some really good days. I am greedy and I want more of those.

I can't help but wonder how many others have "settled" for "my AHI is 4.2 and that is supposed to be okay but I don't feel better and my doc says give it time" "It's been 3 months and I get good numbers but don't see any difference" "everyone says it just takes time". Hmmmmm. I would buy that only after I had done a huge amount of detective work to insure that events weren't still creating havoc. In my case I know that the "clusters" are affecting the way I feel. Easily spotted but only with the software. Overall averages might be okay but that hour where I might have 10-15 events really messes my body up. I can't be the only one in the world that this happens to.

I am increasing my pressure 0.5 tonight to 11.5 minimum. See what happens.

I like to keep my aHI under 1 and usually can, I would think you may be rolling on your back, when I do it does go bad. I tend to do it the first two hours of the night, I watch TV and fall asleep on my back, the Apnea wakes me up and I roll to my side, problem solved. I'd go to 12 CM so the machine can respond faster. Yoiur leaks look good. I dose with OTC decongestants every night they don't cause a problem, but I am not supposed to use them at all. Jim

The respironics m series auto. takes up to 2 minutes to jump each point of pressure when it senses that you need more. That is why closing the pressure gaps on your true needs is important, so you don't spent to much time lower than you need. If any of you purchase an oximeter make sure it is downloadable and get the software with it, otherwise it will do you no good while you are sleeping because you won't beable to see how far you drop since you will be sleeping. The type I use with my respiratory company is the respironics 920m or 920m plus, with download software by the name of profox. These can be quite expensive. If you have a local CPAP supplier such as lincare or apria that you are established with your dr can order an overnight oximetry and those companies will do them for free. Laura RRT