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[split] Sleep Inertia, general Malaise, PLM [Shulamet Therapy Thread]
#1
[split] Sleep Inertia, general Malaise, PLM [Shulamet Therapy Thread]
I  was calling it Morning Depression,  then thought it was Excessive daytime Sleepiness, then learned it is  Sleep Inertia-never feeling refreshed, groggy and hard to get up and out of the house. I have read the posts related to Sleep Inertia/Sleep Drunkenness. There is no Wiki on this. I found good information on Hypersomnia Foundation's site however it is not practical advice as apeaboard is. I am hoping to learn of a success story. I use good sleep hygiene, new mattress, APAP compliance....

After three years on APAP two home studies  one recent and a Titration a year ago, my Sleep Inertia is worse despite Adderall which I take an hour before I have to drag out of bed. it wears off by 4pm and I fall asleep. I have been to four "sleep specialists" none have even optimized my APAP ( AHI are erratic and even when below 5 I still don't wake up refreshed.
I will next try another Pulmonary Doctor for their tests, try the collar again and am looking to switch to the Resmed Airsense 10 for her...maybe a different algorithm will help?

I am still learning how to use Oscar, it is overwhelming when you are tired and foggy.  I have posted the raw data from LOFTA/ Itamar home study....


Attached Files
.pdf   Lofta 12 30 2020 Data.pdf (Size: 952.61 KB / Downloads: 6)
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#2
RE: Sleep Inertia and general Malaise
Shulamet, plm is indicated in your profile & it could explain your unrefreshing sleep. idk if you are doing anything for it but in my experience untreated plm is as exhausting as apnea. pap machines won't help with that. if you want to explore this further, it's probably best to bring it up in your treatment thread.
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#3
RE: Sleep Inertia and general Malaise
Thank You  Sheepless.....PLM was indicated in my Titration study a year ago. My research and asking a Neurologist with a Sleep Specialty indicated there was nothing to be done, can't be treated or cured.... the other Doctors did not know what PLM was. I did  have iron ferritin ruled out, labs were fine. 
I suspect there are other sleep disturbances/fragmentation/disorders, however I was told there are no tests. I need to do what I can.
So I am back to trying to trying to optimize my APAP settings and equipment ( change to a Resmed for Her) and getting a daytime stimulant that works. ( Sunosi and Waiki are not covered by insurance) Maybe a pulse oximeter?

What else did the sleep data show?
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#4
RE: Sleep Inertia and general Malaise
Shulamet, you've been misled about treatment for plm.

since we don't want to continue to hijack hadley101's thread, start your own with a title to your liking, post some oscar charts and any questions you have.

moderators, if okay with Shulamet, I suggest the posts in this thread between Shulamet and sheepless be copied/moved/split to Shulamet's new thread when she creates it.
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#5
RE: [split] Sleep Inertia, general Malaise, PLM [Shulamet Therapy Thread]
Hi Shulamet,

My official diagnosis is Idiopathic Hypersomnia, narcolepsy has been ruled out and have been
told that there isn't much else to do for me as I fall into the un-treatable 5%, this is according to
my pulmonologist/sleep specialist. He did offer Sunosi for treatment and just preferred to pass
on it as I've tried every stimulant possible trying to treat my sleep inertia without much help but
one, run of the mill caffeine. 

Actually get allot of relief with caffeine, its the only thing that clears my brain fog and wakes me up.
My problem is partially neurological as caffeine does seem to have a huge impact on my adenosine
receptors and wakefulness.

Other half of my issue is having obstructive sleep apnea too and this makes my diagnosis complex
or mixed apnea and treatment more complicated apparently. It seems this forum is filled with
people getting complex apnea treated properly but just not me.

Looking for another doctor who will take a closer look than to tell me Idiopathic Hypersomnia is the
end of the line for me and wash his hands of it, pushed to have him to read my dreamstation reports
when I wanted to discuss having central/mixed apnea. Had to tell him the DME told me they
found central apnea events on my sleep reports after finding them on my own, he wouldn't even
entertain the idea at first. He admitted half of my events were central after going back and reading
the report himself begrudgingly. Seemed reserved to the idea that since my AHI comes in under 5 consistently
an ASV isn't called for even after reminding him of my sleep inertia and general awful daily experiences.

Just an absolutely frustrating and exhausting past 10 years it has been!

We seem to both be in the same struggle for treatment that helps and sure do hope this gets worked out
for both of us. I'm going to see another sleep specialist but go in from the very beginning focused on getting
this treated properly and not get run around. Once everyone has been vaccinated I'll feel better about an
in person doctor visit and another possible sleep study, plan on this within the next two months.  

Will check back in here and let you know how I'm doing and find out the same about your situation too.

Good luck!
Hadley
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#6
RE: [split] Sleep Inertia, general Malaise, PLM [Shulamet Therapy Thread]
I am going to try another Neurologist and a Pulmonologist with a sleep specialty in May to get a differential diagnosis re Sleep Inertia/ change to Resmed for different algorithm (maybe reduce the AHI), change of RX etc.
I was told to start a new thread for Sleep Inertia so look for that If I can figure out how to start a new thread with brain frog!
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#7
RE: [split] Sleep Inertia, general Malaise, PLM [Shulamet Therapy Thread]
Look under the Forum Account Help for most anything you wish to do here.   A very important thread is: HOW DO I...

Read this tutorial on starting a thread: How Do I Start A New Thread

-Red
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: [split] Sleep Inertia, general Malaise, PLM [Shulamet Therapy Thread]
The Wiki is very helpful I have read many items more than once.... Some of the tech stuff is not intuitive so I am just trying not to give up. The start a new thread only appears on a certain page of forums....finally found it.
The information here is invaluable. Thank you
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