Do I need a doctor?

[andy88488]

I'm with those who feel having a close relationship with a sleep doctor is not likely to do much for you unless your problems are sleep related. Having a sleep study while using your CPAP at your prescribed pressure could reveal if anything else is going on affecting your sleep that it not picked up in machine data. Not all doctors like to order the tests that way.

My primary care physician was one I really liked, but I think the docs depend on us to really communicate how we feel. They rule out the obvious, and if we are content at that, so are they. Some patients really do go to a doctor with vague symptoms just for reassurance that they aren't dying. I finally got to the point after the doctor gave me one more negative result in a tone of finality that I told them that's great, you've found out another thing that's not wrong, but I need you to keep going till you can tell me what IS wrong. This doctor turned out to be a wonderful ally in my quest for better health.

Have you tried videoing yourself at night just to see if anything is obvious?

Video is an interesting idea. I haven't thought of that. However, I was married until July, and my future-ex-wife was a very light sleeper. She did not report anything to me, like restless leg, tossing and turning, that sort of thing. I actually went back on anti-depressants briefly, and that did bring on restless leg. She reported it to me, I got off the meds, and she reported that it went away. So I'm inclined to think that the video is probably not necessary. I had a "vigilant" wife.

[Julie]

I MEANT to say this - I was diagnosed ? 8-9 yrs ago and haven't seen anyone at all re OSA since then, and see no need to do it now unless something changes - but I'm very 'regular' and everything just keeps going the same way all the time, so I guess it's up to you.

[andy88488]

The general feeling on the CPAPtalk board is that one needs to be skeptical of doctors and manage your own care.

Hi Andy,
I am not sure I agree with this statement. Stick "DME" in place of "doctors" and you'd be spot on!

With doctors I think the idea is to find one that works with you as a team, and to ALWAYS ALWAYS (CPAP or otherwise) be your own patient advocate. When push comes to shove, nobody cares about your health the way you do.

So my recommendation in this case is to find a doctor that treats you with respect and engage him or her on the symptoms to see if there's other causes. In the mean time, if you care to post your data perhaps we can offer some ideas.

-Kevin

Okay, here is what I have. Please understand that I don't really understand this stuff too much, so if I've omitted something, please let me know. These are from the long-term trends page of the report. I don't think that the detailed reports vary that much.
Average Hypopnea Index 0.2
Average RERA Index 0.4
Average AHI: 0.6
Average FL Index: 0.8
Average VS Index: 3.2
Average Leak 0
Average % of night in periodic breathing: 0.1%
Average CA Index 0.1
Average OA Index 0.3

Other than the snoring, these numbers seem to me to be extraordinarily low.

[Julie]

You look to be doing really well... so why look for trouble where it seems not to be? If you're not feeling 100% then do talk to the 'other' doctors, but I can't see from what you've shown here that OSA or Cpap would be the 'thing' to start dissecting. It's new(er) to you, but seems to be fine, so until something more obvious looks wrong or you develop more definitive symptoms, look somewhere else for answers.

[old64mb]

You probably don't need a sleep specialist currently, but it's something to keep in mind for the future.

Here's the way to think about it. Your health is either stable or it's not. If you're not stable, you need to be going in to see someone to both diagnose and treat you.

For that diagnosis, internal medicine types who are your primary care physicians are your first stop for a reason. They are very good at figuring out a wide range of conditions and ruling other stuff out. They are also who you want coordinating your overall treatment, since medicine is, as it was once told to me, the 'doctor's doctor' of specialties as it combines everything together.

On the other hand, specialists are who you see when you have a condition that is outside your PCP's capability of handling. They are familiar with a lot more specific applications of drugs and treatments. Here's an example based on one of your medications. If you're being prescribed a widely used psychopharmacological like Concerta, your PCP is probably ok; they probably have a decent amount of experience with it, it's relatively benign, and there's a long trail of research on it. However, if you end up not reacting well to it, that's an immediate referral to a psychiatrist. That wouldn't necessarily be because you have psychological problems per se. It would be that once you start getting into different medications that are less widely prescribed, or multiple medications, or that your condition is such that a PCP isn't comfortable in treating you, that's when you need to see a specialist. That's where clinical expertise comes into play, since a psychiatrists do use that part of the drug cabinet and know those medications and symptoms and conditions far better than internal medicine types.

The key to consult a specialist, then, is whether or not your PCP feels they can treat you and all your conditions effectively.

Based on the fact that your PCP asked if you had a sleep doctor, they are really the person you should be asking if you need one. Some PCPs have a good deal of expertise in sleep medicine. Most don't. It's really more a matter of what they think, and it's worthwhile bringing up the next time you sit down with them.

She did not report anything to me, like restless leg, tossing and turning, that sort of thing. I actually went back on anti-depressants briefly, and that did bring on restless leg. She reported it to me, I got off the meds, and she reported that it went away.

Now this, on the other hand, would be exactly the reason to find a sleep specialist and establish a relationship with them, since a discussion should be had with someone who has familiarity with dopamine levels and their effects. That's not likely to be found outside of sleep, and it's also something that someone who would prescribe you anti-depressants should be made well aware of and coordinate your care with whomever deals with your sleep.

Hence, if you end up switching or adding drugs, or needing more treatment because your health isn't stable - that's when you need to see someone, specialist or PCP.

Hope that helps.

[avi123]

Why don't you ask the MD who you see the most if you should go see a sleep MD or do a sleep study?

I am asking you this even though my Internist MD that I have seen for more than a decade diagnosed two years ago that I was coming down with Peripheral Neuropathy (soles of my feet became numb) and did NOT send me to see a Neurologist. Next, when I came back with sleep problems he just increased the Zolpidem dose (generic Ambien). Luckily, I went to see another Internist/ Geriatric MD who immediately suspected OSA syndrome, and was smart enough to arrange a sleep study for me. BTW, I am on Medicare and can go to any MD who accepts Medicare patients. The minus of this is that almost every DOC that I visit gives me a new Rx without even glancing at my Rx list..

[Coach_Houston]

I am on day 2 of my CPAP....Had my sleep study 10 months ago, took me a while to find a doctor who understood. Go to a local medical supply store, and ask to talk to their CPAP rep. He will gladly provide you with a good Doctor to talk to. I asked my local supply store guy for a good doctor who also used a CPAP. I now have a cardiologist who uses a CPAP and a general pract. doctor who uses a CPAP.

[NotLazyJustTired]

Andy,

That Average FL number of 0.8 may seem low, until you understand that the range is 0.0 to 1.0. If you truly are seeing that kind of Flow Limitation and are the sort of person that has a sensitive nervous system, it can be causing arousals in your sleep and causing sleep fragmentation leading to daytime fatigue. Have you ever had an overnight sleep study? If so, did they score RERAs (respiratory event related arousals)? For more info, do a search on UARS (Upper Airway Resistance Syndrome).

OTOH, it may be nothing, not everyone with FLs has issues with it. But if you are still feeling fatigue after getting the apnea under control, it might be a good idea to talk to a sleep doctor about it.

[Pugsy]

That Average FL number of 0.8 may seem low, until you understand that the range is 0.0 to 1.0.

Actually Andy's FL number is quite low. His machine reports FLs differently than your machine does. He has a Respironics PR System One machine and his machine flags FLs as individual events. You are using a ResMed S9 machine and your FLs are recorded as a graph. So 2 totally different ways of presenting a piece of data.
His 0.8 is a per hour average and 1 per hour for him with his machine is really insignificant. He would need double digit FL numbers before we would worry about FLs and also we would look at his RERA numbers which are also flagged as individual events. Your S9 doesn't flag RERAs which are Respiratory Event Related Arousals. His RERA is also less than 1.0.
So the FL and RERA numbers are actually quite low and are pretty much insignificant. Nothing there screaming UARS in this situation. Of course UARS could possibly be a factor here despite the low numbers but it is unlikely in this situation.

[NotLazyJustTired]

That Average FL number of 0.8 may seem low, until you understand that the range is 0.0 to 1.0.

Actually Andy's FL number is quite low. His machine reports FLs differently than your machine does. He has a Respironics PR System One machine and his machine flags FLs as individual events. You are using a ResMed S9 machine and your FLs are recorded as a graph. So 2 totally different ways of presenting a piece of data.
His 0.8 is a per hour average and 1 per hour for him with his machine is really insignificant. He would need double digit FL numbers before we would worry about FLs and also we would look at his RERA numbers which are also flagged as individual events. Your S9 doesn't flag RERAs which are Respiratory Event Related Arousals. His RERA is also less than 1.0.
So the FL and RERA numbers are actually quite low and are pretty much insignificant. Nothing there screaming UARS in this situation. Of course UARS could possibly be a factor here despite the low numbers but it is unlikely in this situation.

Pugsy, thank you so much for that clarification. I stand corrected. Yes, I would agree then that an RDI of 1 or less would probably not be bothersome to sleep architecture. Sorry Andy, I thought I was on to something, my bad.

[andy88488]

Thank you all for all of your helpful comments! I was going to respond individually, but since the consensus is pretty clear, I'll just say thanks to all. I did think those numbers looked startlingly good, and that it seemed to indicate that there was no real point in looking at Sleep issues for my fatigue. Or at least, not Apnea issues. I was hoping to use Zeo to see if my sleep was good regarding Alpha waves, REM, etc, but Zeo as a company imploded before I had the opportunity to do so.

I guess the major question is, if I had a major change in my Apnea, or how I responded to my CPAP, would I be able to recognize it? Because it does seem like right now, yes, I have this thing figured out. I tolerate the machine and mask extremely well, the mask fits well, the machine appears to be very, very effective in dealing with my Apnea.

I don't have the feeling that my Internist really understands sleep issues, but I will ask his opinion the next time I see him.

Andy

[Pugsy]

thank you so much for that clarification.

You had a great idea and actually I wish that we had something like that to point the finger at.
I have seen a lot of Andy's reports in the past and I wished often that there was something somewhere on those reports that was screaming "fix me" so we would have something to try. His reports are actually very boring though.
If I remember right we did try a little more pressure just to see if we could reduce the events that we did see on the off chance that he was super sensitive and the least little thing was causing sleep architecture problems.
There comes a point where we can't reduce the events any more no matter how much pressure is used.

[andy88488]

You had a great idea and actually I wish that we had something like that to point the finger at.
I have seen a lot of Andy's reports in the past and I wished often that there was something somewhere on those reports that was screaming "fix me" so we would have something to try. His reports are actually very boring though.
If I remember right we did try a little more pressure just to see if we could reduce the events that we did see on the off chance that he was super sensitive and the least little thing was causing sleep architecture problems.

Yeah, you and me both! I also was hoping that there was some magic bullet here, like that I needed a VPAP or something, but I would think that would show in the Apnea detection. Unfortunately, my Apnea is very garden-variety, and yes, BORING. It's my secret shame...

Thank you for your help Pugsy!

[Pugsy]

I also was hoping that there was some magic bullet here, like that I needed a VPAP or something, but I would think that would show in the Apnea detection.

Actually no..a need for bilevel wouldn't necessarily show up in the reports.
Did you ever read my story and how I ended up with bilevel machines?
viewtopic/t71442/viewtopic.php?f=1&t=71 ... te#p656179

Short version is that I also had really boring reports on APAP and found out I actually felt better on bilevel.
BUT....my issue was being sleepy in the afternoons...you say you aren't sleepy so that's why I haven't talked about bilevel.
It's a pretty expensive experiment. I found out that I sleep approx 1 hour longer on Bilevel machine than I do/did on the APAP machine and it appears that extra hour really helps with my sleepiness during the day. Now why I sleep longer (when left to wake up on my own) on the bilevel machine....I have no idea what or why that happens.

Plus I am not on any meds that are known fatigue side effect meds. Also I have experimented with times where I took zero meds for a while to eliminate meds as any culprit for possible explanations of why I wasn't experiencing the "miracle" that others have despite my boring reports on the APAP.

I don't know if your meds are a factor in how you feel or not and I sure can't advise going without them because your situation is different from mine. My meds are comfort meds and not BP meds or other potentially significant health meds.
It wasn't dangerous for me to go without meds while experimenting.

[andy88488]

I also was hoping that there was some magic bullet here, like that I needed a VPAP or something, but I would think that would show in the Apnea detection.

Actually no..a need for bilevel wouldn't necessarily show up in the reports.
Did you ever read my story and how I ended up with bilevel machines?
viewtopic/t71442/viewtopic.php?f=1&t=71 ... te#p656179

Short version is that I also had really boring reports on APAP and found out I actually felt better on bilevel.
BUT....my issue was being sleepy in the afternoons...you say you aren't sleepy so that's why I haven't talked about bilevel.
It's a pretty expensive experiment. I found out that I sleep approx 1 hour longer on Bilevel machine than I do/did on the APAP machine and it appears that extra hour really helps with my sleepiness during the day. Now why I sleep longer (when left to wake up on my own) on the bilevel machine....I have no idea what or why that happens.

Plus I am not on any meds that are known fatigue side effect meds. Also I have experimented with times where I took zero meds for a while to eliminate meds as any culprit for possible explanations of why I wasn't experiencing the "miracle" that others have despite my boring reports on the APAP.

I don't know if your meds are a factor in how you feel or not and I sure can't advise going without them because your situation is different from mine. My meds are comfort meds and not BP meds or other potentially significant health meds.
It wasn't dangerous for me to go without meds while experimenting.

No, I hadn't seen that. Thanks so much for linking it. Interesting... So you thought you were fine on APAP, but just tried bilevel more or less as a lark.

Yeah, I'm not sleepy. I don't wake up feeling hugely well-rested and energized, but I'm inclined to put that down to overall fatigue and overall low energy level, rather than a specifically sleep-related issue. Actually, the past few nights, for whatever reason, I'm waking up briefly in the middle of the night, checking the time, then going back to sleep without difficulty. Fairly unusual for me, and I'm not sure why. I had a little bit of an upsetting relationship issue, but I don't really think it's bothering me that much.

My doctor was fine with trying to eliminate the Lisinopril. As a matter of fact, the Blood Pressure monitor just arrived from Amazon. So we'll see how it goes.

Thanks,

Andy