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Is My Doc Being Unreasonable?


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#21 ironhands

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Posted 25 September 2013 - 04:51 PM

There is synthetic melatonin, but it's found in plants (i think most sleep things are).  It's used in plants to determine how deeply the roots grow, versus how much they grow above ground.  Seems like more melatonin in a plant, means more daylight, means more "awake", whereas less melatonin, means deeper roots, nutrition from the soil instead of relying as much on photosynthesis.



#22 IdiopathicHypersomniac

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Posted 25 September 2013 - 04:55 PM

Forget that -- scoring it by hand in 30 second epochs takes forever.  I work with sleep techs.  They have to look at the camera footage to determine some arousals.  It's not cut and dried.  I have a crude home device, but it's not accurate at all.  It can misread REM, wake, and Stage 1, as well as Stage 3.



#23 IdiopathicHypersomniac

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Posted 25 September 2013 - 04:57 PM

Melatonin is junk.  If you're in the US, get ramelteon (Rozerem).



#24 ironhands

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Posted 25 September 2013 - 04:58 PM

Which device is that?  The software could be automated to do that, but, like I said, hobbyist grade, a step up from the consumer level gear, with the freedom to hack the software.  The kit I saw used 4 electrodes, most of the consumer grade use 1-2.



#25 IdiopathicHypersomniac

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Posted 25 September 2013 - 05:20 PM

There's more to it than just electrodes.  You need to look at oximetry, flow limitations, video footage, limb movements.  Home equipment can only do so much.  Even PSGs do not show everything.  You've got chemicals swirling around in your brain that a PSG cannot "see".  PSGs cannot see subcortical arousals.

 

All a sleep study is good for is ruling out two things ... apnea, and limb movements.



#26 ironhands

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Posted 25 September 2013 - 05:24 PM

Yup, but I'm really only interested in the EEG activity for myself.  I scored a 0.0 for apnea related events.  Limb movements wouldn't easily be as easily trackable, but you could incorporate a gyro sensor in the headband to track tossing/turning.  not going for clinical accuracy here.  What do you expect for $200 :P



#27 IdiopathicHypersomniac

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Posted 25 September 2013 - 05:43 PM

Why?  All that really matters is how you feel.  If you're sleepy, you're sleepy.  If there's cataplexy, it's narcolepsy, otherwise it's IH.  Simple.  I can't tell you how many people in the sleep field have told me that MSLTs are complete junk.  They can only measure how fast you fall asleep, not how sleepy you are.  You can be sleepy and still not fall asleep in 20 minutes.  Insomniacs and apnea patients all report these problems.

 

Do you know how many normal and apnea patients can get a false positive MSLT, and how many narcoleptics can get a false negative?  There's a 50/50 chance the test will be wrong.



#28 ironhands

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Posted 25 September 2013 - 06:22 PM

Because I like EEG technology and BCI's in general.... I've been tinkering with the idea long before even considering I had sleep issues.



#29 Julie A

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Posted 25 September 2013 - 08:33 PM

Not to go off topic from the current conversation of this thread but...

 So how do you suggest I go about this? Do I make an appt with a couple of sleep specialists as a sort of consult, bring my records, and ask how they would go about treating me?Then decide which to stick with? 

How would others go about this, I wonder?

 

Figured I'd just quote myself rather than ask again :) I've never had to do this so not quite sure how to go about it. Thanks all!



#30 IdiopathicHypersomniac

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Posted 25 September 2013 - 09:01 PM

Go to your family doctor and say that you need a referral to another sleep specialist because of a personality conflict with your current one.  Just be honest and tell your story calmly.  You don't need to put up with abuse like that.  Good luck!



#31 Ferret

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Posted 25 September 2013 - 09:13 PM

Have you ever done it IH? <_< I mean trying to get your medical records from one Doctor to see another Doctor? My Doctor seemed to think they were his personal property and we had a loud difference of opinion. I pointed out that I paid for them and I paid for him too...that he was keeping them for me. He finally got the point and gave them to me. Some Doctors have huge egos and can't stand the thought that they might be proven wrong. I suspect the OP's Doctor falls into that category...but I do wish her luck.



#32 IdiopathicHypersomniac

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Posted 25 September 2013 - 09:57 PM

I've done it.  If her doctor says no, just say "I'm going to report this to the state medical board".



#33 Ferret

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Posted 25 September 2013 - 10:06 PM

Beauty! I'm gonna remember that line :D



#34 sk8aplexy

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Posted 25 September 2013 - 10:08 PM

I'd fallen, hurt my neck, was driven to E.R. by a friend, this was a skateboarding injury.  They clearly thought I was after pills and said it was only muscle damage, although that there were some irregularities which were likely developmental cervical disc degeneration matters in my neck.  I didn't get along with the doctor in the E.R., she gave me a big spew about wearing a helmet and straight up said I just wanted pills; which was absolutely not the case, I'd frikken hurt my neck.

They didn't even give me any ice, the 4-5 hours I was there; my Mother came and watched, it was outrageous, they'd drop the lifted bed with no warning, and they told me they'd not help move me from the wheel chair to the bed, that no screaming is allowed in the E.R.  It was one of my most awful experiences.  And, my shoulder as well as neck have never felt the same...

The following year, I went into the medical records room and asked for all records from the past 10 years, this included 4 sleep studies and that visit along with when I'd broken my thumb years ago...

Guess which files were not included. 

So, I went back in the following day and got very specific about which documents they'd 'not' included, basically in a not so friendly tone, I demanded the files.

They said, "oops, here they are, they were in this other" spot...  Bologna; as I read them, more and more about my neck became apparent.



#35 Megssosleepy

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Posted 26 September 2013 - 12:00 PM

Why?  All that really matters is how you feel.  If you're sleepy, you're sleepy.  If there's cataplexy, it's narcolepsy, otherwise it's IH.  Simple.  I can't tell you how many people in the sleep field have told me that MSLTs are complete junk.  They can only measure how fast you fall asleep, not how sleepy you are.  You can be sleepy and still not fall asleep in 20 minutes.  Insomniacs and apnea patients all report these problems.

 

Do you know how many normal and apnea patients can get a false positive MSLT, and how many narcoleptics can get a false negative?  There's a 50/50 chance the test will be wrong.

 

There is Narcolepsy without Cataplexy.  I had the understanding that people with IH tend to sleep long long hours but still have EDS.  I also thought they did not have the audio or visual hallucinations, Sleep Paralysis, or the same sleep architecture.  I could very well be wrong though. 

 

When I was first DXed they said N w/o C, but after finding out what Cataplexy was I realized I definitely had that too.  

 

With the MSLT they are really just looking to see if you fall into REM quickly. I do agree that many Narcoleptics get a false negative due to many different reasons.  The key is you really can't get a false Positive.  Someone who is a "normal" sleeper shouldn't be able to fall asleep within (what is it like 10mins) for all 5 naps and they won't go into REM either.  This is after getting 7+ hours of sleep.  I am sure a normal person who slept like crap the night before or didn't get but 3 hours may be able to fall asleep quick for a few of the naps, but they wouldn't go into REM.  Plus the MSLT is paired with the night test to see how much SWS there is.  Narcoleptics do not spend much time there if any. 



#36 Megssosleepy

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Posted 26 September 2013 - 12:02 PM

Not to go off topic from the current conversation of this thread but...

 

Figured I'd just quote myself rather than ask again :) I've never had to do this so not quite sure how to go about it. Thanks all!

 

You should be able to go to the new Doctor and fill out a form and they will do all the legwork to get your records.  Its a simple waiver form.  No need to ask your current sleep doc for it. 



#37 ironhands

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Posted 26 September 2013 - 12:07 PM

Personally, I like to think of N as a symptom, not really a diagnosis, in the same way that depression can be both a diagnosis and a symptom, because of the whole "secondary narcolepsy" do to other neurological issues or other autoimmune conditions.  I don't think I'd be able to fall asleep within 10 minutes, I don't nap well; a by-product of forcing myself awake all these years, plus the stress of the situation, though, I'm convinced I'd show a sorem or two.  Dr. Mignot just published a SOREM on a PSG is sufficient in 90% of cases to get an accurate diagnosis, so, the MSLT could potentially be phased out, and only used if no sorem activity was present on a PSG.  The study is/was published in a recent JAMA.

 

http://archneur.jama...ticleid=1684863

 

Julie - finding the right doctor can be a pain, I got lucky with my sleep Dr I think (though the same can't be said for the clinic he's at).  I don't think there's any real simple answer, other than be honest and direct.

To get your records, shouldn't be too difficult, I told my place that I wanted a copy to take to my dentist who has sleep issues as well, and I couldn't remember his fax number.  Had it in 5 minutes.  Wasn't even a lie really :P



#38 Megssosleepy

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Posted 26 September 2013 - 12:11 PM

How effective is melatonin?  Wondering if it'd be useful for me.  I have no trouble falling asleep as it is, staying there and regulating it is of course an issue.  How long does it stay in your system?  What would happen if I popped one in the morning?

 

Before I was DXed I tried everything to stay asleep.

 

When I went for my first office visit with my sleep doc I told him about everything that I tried.  When I said Melatonin he said it was more for people with Shift Disorder. When he mentioned he thought I had N he said Melatonin doesn't work on Narcoleptics.  He was right it didn't do anything to keep me asleep.  I have heard that it works for some people... so its worth a shot though.



#39 DeathRabbit

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Posted 27 September 2013 - 10:49 AM

I've done it.  If her doctor says no, just say "I'm going to report this to the state medical board".

I had to threaten that as well, because my previous sleep doc was dragging his heels on getting my hypnogram to the new guy.



#40 ironhands

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Posted 27 September 2013 - 10:50 AM

heh, I carry mine in my wallet ;P