Do I need a doctor?

[andy88488]

Hi all,

I was diagnosed with Apnea in 2007 by an ENT who didn't understand sleep issues. He prescribed my first CPAP machine, but when I had questions, he referred me to a specialist.

I've seen different sleep specialists a few times, but never really found one I clicked with. (Much like women in that regard... )

I've been paying for my own CPAP supplies, monitoring my own AHI stats, etc, basically since the initial diagnosis. I'm 100% compliant, and according to my data, my AHI etc is very low. I do have a problem with low energy level and overall fatigue, but I'm NOT sleepy. As a matter of fact, I realized yesterday that I used to fall asleep in the early evening of weeknights fairly frequently, and I haven't done that in a long time.

Hence my question. The general feeling on the CPAPtalk board is that one needs to be skeptical of doctors and manage your own care. I guess I've taken that to an extreme. I saw my Internist yesterday, and he asked me, "Who's your Sleep Doctor?" And my answer was, "I don't really have one."

So what is people's opinion? Do I need a doctor?

Thanks,

Andy

[cosmo]

I don't think it would hurt to go see a doctor. Try to rule out any other underlining medical conditions. You have sleep apnea under control, now its time to see what else it could be.

[NotLazyJustTired]

I will agree with Cosmo here. If you have your OSA under control but you are still feeling residual fatigue, then there maybe something else going on that needs to be diagnosed. I am not a doctor so I won't suggest what it might be, but I have one question for you...does your data show residual Flow Limits?

[andy88488]

I don't think it would hurt to go see a doctor. Try to rule out any other underlining medical conditions. You have sleep apnea under control, now its time to see what else it could be.

Well, I should say that I already saw one doctor. He did not even look at my sleep study or my CPAP data. He listened to me and had me try Provigil. It didn't really work. The question is more like, should I form a relationship with a doctor, and be under a doctor's supervision?

[andy88488]

I will agree with Cosmo here. If you have your OSA under control but you are still feeling residual fatigue, then there maybe something else going on that needs to be diagnosed. I am not a doctor so I won't suggest what it might be, but I have one question for you...does your data show residual Flow Limits?

Thanks for your message. I'm not a whiz at interpreting the data, and I'm at work (data is at home). However, I can't find anything in the data which would give me anything to follow up on. All of my numbers, including AHI, Leaks, Flow Limitations, etc, are depressingly low. (I wish they were higher so that maybe there would be a solution here!)

[NotLazyJustTired]

OK, well the reason I asked is because I have UARS which is a close cousin to sleep apnea. Basically I respond to Flow Limits by arousing from lower level sleep which causes sleep fragmentation and fatigue. Like you, I never really described myself as sleepy, just tired all the time. Did your doctor do blood work? I was initially diagnosed as having hypothyroidism and for a time that is all we thought it was. After my TSH numbers came down, we started looking elsewhere. Like I say, there may be something else going on, and you really need a medical professional to help you find it, so yeah, I would definitely seek professional help. Having said that, ask around for a doctor with a good reputation. I only have the excellent Dr. I have because a number of referrals from close friends and family. That's my PCP; jury is still out on my sleep Dr.

[khauser]

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

[Pugsy]

Are you still taking the Lisinopril and Concerta?

http://en.wikipedia.org/wiki/Lisinopril
From the above link...side effects
Drowsiness, headache, tiredness

We already talked about Concerta.
viewtopic.php?f=1&t=87040&st=0&sk=t&sd=a

When you say "should I see a doctor" are you talking about a sleep specialist doctor or a regular all purpose doctor?

[Julie]

If you're basically satisfied with your Cpap Rx ('not sleepy'), you still need to see someone about the rest of you (I take it you're not a 23 yr old fitness instructor and get some general labs done to check e.g. sugar, thyroid, cardiac status apart from OSA, etc. Not everything's an apnea just because you're on Cpap.

[LSAT]

If you're basically satisfied with your Cpap Rx ('not sleepy'), you still need to see someone about the rest of you (I take it you're not a 23 yr old fitness instructor and get some general labs done to check e.g. sugar, thyroid, cardiac status apart from OSA, etc. Not everything's an apnea just because you're on Cpap.

I Agree!

[andy88488]

Are you still taking the Lisinopril and Concerta?

http://en.wikipedia.org/wiki/Lisinopril
From the above link...side effects
Drowsiness, headache, tiredness

We already talked about Concerta.
viewtopic.php?f=1&t=87040&st=0&sk=t&sd=a

When you say "should I see a doctor" are you talking about a sleep specialist doctor or a regular all purpose doctor?

Hi Pugsy! Gee, you remembered! I'm flattered!!!!!

I did talk to my doctor about the Lisinopril, and we're trying to taper me off, to see how I feel off of it. For right now, I'm halving the dose for a month, and monitoring my blood pressure. Yes, the Concerta is a fairly recent addition to the mix, so I know that's not the culprit.

This question is sort of less about "Why am I fatigued?" and more about "Do I need to be monitored by a Sleep Doctor?". I do think that it's unlikely that my fatigue is sleep-related, so I'm trying to figure out if I just need my treatment and condition monitored by a Sleep doctor anyway.

[andy88488]

If you're basically satisfied with your Cpap Rx ('not sleepy'), you still need to see someone about the rest of you (I take it you're not a 23 yr old fitness instructor and get some general labs done to check e.g. sugar, thyroid, cardiac status apart from OSA, etc. Not everything's an apnea just because you're on Cpap.

Oh, I am seeing someone about the rest of me! I actually saw my internist yesterday. One of my goals there was to try getting off Lisinopril, to see if maybe that was causing my fatigue. No, regrettably I am not a 23 year old fitness instructor (and when you said that, my mind's eye saw a hot young woman in spandex, which is not me either!), and I have checked a number of these things already. My sugar is okay, my thyroid is okay, my heart is okay, my cholesterol is okay, my testosterone is low but with medication is okay, my blood pressure is okay but we have to see now that I'm tapering off Lisinopril. I'm under the care of several doctors, and have checked for many issues.

The specific issue for me is, since I don't seem to be having any sleep-related issues, if I should still have a Sleep Doctor whom I see regularly.

Andy

[Pugsy]

For me..whatever that is worth...if I were sleeping well, getting adequate hours of quality sleep and my OSA appears to be well controlled (as yours is) then I wouldn't be looking at a Sleep doctor unless I was having problems with some sort of aspect with sleep either insomnia or some sort of sleep disordered breathing.
I would be looking at the other stuff that affects how I feel during the day and for that I think a general purpose doctor would be a starting point.

Look at it this way...what would you expect a sleep doctor to offer or suggest? Maybe a sleep diary/log to see if there was something that stood out as a possible sleep related factor. Like I have discovered that 7 hours of sleep and I am "okay" but with around 8 hours of sleep I feel a whole lot better. That extra hour of sleep is something I seem to need and this is with the other aspects of my sleep pretty much being unchanged.
Have you thought about doing that sort of diary just in case you can see something that sticks out? Wouldn't hurt.

[kteague]

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?

[andy88488]

For me..whatever that is worth...if I were sleeping well, getting adequate hours of quality sleep and my OSA appears to be well controlled (as yours is) then I wouldn't be looking at a Sleep doctor unless I was having problems with some sort of aspect with sleep either insomnia or some sort of sleep disordered breathing.
I would be looking at the other stuff that affects how I feel during the day and for that I think a general purpose doctor would be a starting point.

Look at it this way...what would you expect a sleep doctor to offer or suggest? Maybe a sleep diary/log to see if there was something that stood out as a possible sleep related factor. Like I have discovered that 7 hours of sleep and I am "okay" but with around 8 hours of sleep I feel a whole lot better. That extra hour of sleep is something I seem to need and this is with the other aspects of my sleep pretty much being unchanged.
Have you thought about doing that sort of diary just in case you can see something that sticks out? Wouldn't hurt.

Yeah, that's where I've been, up to this point. I haven't had a sleep doctor, and I haven't really felt the need for one. I recently went to the one guy, who prescribed Provigil without seeming to really give a lot of thought to my overall sleep situation, and after I realized that Provigil wasn't the answer, I wasn't inclined to go back to him. It wasn't until my internist asked me who my Sleep Doctor was, and I realized, "I don't really have one", that I thought about this.

It's not that I think that a Sleep Doctor is really going to do anything special at this point (unless there's something I'm not seeing, which is of course possible). It's that I was thinking that since a CPAP is a prescription device, and since this is (theoretically) a somewhat life-threatening condition, should I be monitored by, and checking in with, a specialist?

A sleep log is definitely a possibility. I will certainly consider it. I don't generally feel like there is that much variability in how I feel. On one or two mornings when I've just felt awful, I've gone back to my data to see if there is any correlation between (for example) a higher AHI and my feeling poorly rested. I haven't found any.