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Ok I'm Compeltely Fed Up With Doctors.


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#21 IdiopathicHypersomniac

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Posted 01 February 2014 - 11:36 AM

You have sleep apnea, not narcolepsy.  Looks like your doctor's hunch was right about the 0.0 AHI on your prior test.  Why do you want a diagnosis of narcolepsy?  They will retest you in a few months with the machine.  What psych issues are you talking about?



#22 ironhands

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Posted 03 February 2014 - 11:07 AM

You have sleep apnea, not narcolepsy.  Looks like your doctor's hunch was right about the 0.0 AHI on your prior test.  Why do you want a diagnosis of narcolepsy?  They will retest you in a few months with the machine.  What psych issues are you talking about?

Yes, I believe that is what I said.  I don't want a diagnosis of N; just a solid diagnosis instead of it being up in the air, because even with the apnea diagnosis the sleep architecture is still highly disturbed.  My retest with the machine is next Monday, so we'll see if the sleep architecture is fixed up now that the CPAP's working - I'm checking my detailed logs every night, my AHI's down from 16 to ~0.5 which is very low, so I'm on the right track there and I'm feeling more alert already, but still physically tired.  Should take a month of two before I really start noticing the effects.  Haven't had any hallucinations this week, nor am I consciously waking up more than once.  Last night it was only once when I needed to refill the humidifier - the dryness was pretty bad.

 

Psych issues are confirmed atypical depression, possibly avoidant personality disorder (quite likely, but undiagnosed, need to get the sleep under control before an unbiased diagnosis can be made of course, as the deprivation can be having a substantial impact on the mood).  it's not uncommon for avoidants to seek out stimulants to self-medicate.  Doc advised me to pick up some tryptophan to boost my serotonin to help regulate the mood and sleep, and a massive dose of the vitamin B's

 

Still somewhat concerned about it being N, but it's pretty unlikely at this point.  Not really satisfied with the MSLT results because I was pretty stressed, but I don't really care what the diagnosis is ultimately so long as I start seeing an improvement.  REM latency on the first PSG was 8 minutes, the second, 158, both are pretty atypical, as are the number of spontaneous arousals, but I'll have my results with the CPAP in a few weeks and we'll go from there.



#23 Hank

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Posted 03 February 2014 - 04:31 PM

Well I sure hope you get some relief from your EDS soon. And I definitely hope you do not have Narcolepsy as well. OSA alone is a lot more manageable than both.

Either way, symptomatic relief is the goal and I hope you attain it. Please take good care of your mind, body and soul- only good things come of it. And you deserve good things in your life.

#24 ironhands

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Posted 04 February 2014 - 04:09 PM

So do I.  I'm a little more alert now, but it'll be a while for the body to get all caught up if the apnea is responsible for all of this.  Any idea what else could be causing so many arousals when they aren't all apnea related?

 

Thanks for the support!  Starting to feel like there might be resolution in sight for a change.



#25 Hank

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Posted 04 February 2014 - 06:39 PM

So do I.  I'm a little more alert now, but it'll be a while for the body to get all caught up if the apnea is responsible for all of this.  Any idea what else could be causing so many arousals when they aren't all apnea related?

 

Thanks for the support!  Starting to feel like there might be resolution in sight for a change.

Here's my 2 cents- don't wrack your brain with the "what else could be causing this". It will drive you bonkers. Until the OSA is well managed, even the best specialist will not be able to answer that.

 

Give yourself a break and take care of yourself.  If-  when everything is well managed and you are taking good care of your body, mind and spirit- there is still a problem, then you have a problem. Resist jumping that far ahead until you have done everything else for enough time.

 

I hope that does not sound dismissive. I mean it more like" steady on" or "chillax".



#26 SleepyDays

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Posted 04 February 2014 - 11:06 PM

I have UARS and N with C.

The CPAP machine hasn't helped the EDS at all. (I've been using it for approx. 8 months.)

I do find that I have more mental clarity in the morning since I started using CPAP.

I'm going to continue using it, I definitely breath more easily over night.

As my doc explained, if the machine makes me feel even 5 or 10 % better...even if it's just in the morning....grab what I can get..... it's worth it.

 

I hope you find the CPAP helps you.  It would be great not to have to be on meds!!!

 

Just an aside....if your humidifier has dried out overnight you might be leaking.... are you using nasal pillows?  You might be breathing through your mouth overnight.  (our jaws naturally relax) Check out the papCAP online by Pur-Sleep...it's a great way to train yourself to sleep with your mouth closed.

I found eventually I didn't need to wear it.



#27 ironhands

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Posted 05 February 2014 - 10:33 AM

I'm using a wisp, and checking my logs in the morning, there's generally only one OA event per night so not a worry.  I have a mirage as well if I get worried about mouth breathing, but seems fine.  I generally clench my jaw pretty hard at night and wear a mouthguard.  Humidity is fine, I fill it nightly and keep it on 4-4.5.

 

I do agree with the clarity, but still pretty lethargic/physically tired.  I'm more alert, but still yawning



#28 SleepyDays

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Posted 05 February 2014 - 07:49 PM

I wonder if you started taking a whole bunch of naps...with the CPAP machine on....could you dig yourself out of your sleep debt faster?

I'd be tempted to take a week off work and sleep as much as I possibly could....just to try to kick the EDS to the curb as quickly as possible.

Wonder if it would work????