Appointment with Dr.Earley

For everything and anything else not covered in the other WED/RLS sections.
Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Appointment with Dr.Earley

Postby Orrel » Sat Sep 05, 2015 2:20 am

I had my long-awaited appointment with Dr. Earley this past Tuesday, Sept. 5.'
I found him to be caring, compassionate and empathetic. He seemed pleased
that I had taken myself off the badly augmented Neupro patch, even though
I used clonazepam. I was able to do this with the help of a local neuro whose
name I got using the RLS Foundation website's search engine. Since I can't use
dopamine agonists and drugs like Lyrica (it scrambled my brain), I am
restricted to sleep drugs or opioids. Since my baseline symptoms are rather
mild, even though they happen every night, he suggested Ambien (in place of clonazepam)
but not every night to avoid tolerance and addiction. If this doesn't work, then I can go
to one of the opioids. I think I will see if I can manage without any drugs. He said that
some with milder symptoms do this. At least side-effects can be avoided. If this
proves intolerable, then I can go to prescription drugs.

He gave me some interesting information. As those with rls know, we
usually get less sleep than the general population. (He has a patient who gets only
three hours of sleep every night and is very high functioning.) However, this does not
mean that we will experience the dire health consequences predicted by those who
say we need 8 hours of sleep for good health and well-being. We won't. Also
autopsies were performed on those who had rls. An examination of their brains
showed less than average evidence of dementia, including Alzheimer's plaques.
A nugget of good news???

ViewsAskew
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Posts: 15742
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Appointment with Dr.Earley

Postby ViewsAskew » Sat Sep 05, 2015 4:21 am

So glad you had a good appointment with him.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
Posts: 386
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Appointment with Dr.Earley

Postby Yankiwi » Sat Sep 05, 2015 4:30 am

Orrel wrote:Also autopsies were performed on those who had rls. An examination of their brains
showed less than average evidence of dementia, including Alzheimer's plaques.
A nugget of good news???

That is good news.

Polar Bear
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Posts: 7554
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Appointment with Dr.Earley

Postby Polar Bear » Sat Sep 05, 2015 8:46 am

This is indeed a positive comment from Dr Early.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Posts: 4086
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Appointment with Dr.Earley

Postby Rustsmith » Sat Sep 05, 2015 9:00 am

As someone with a family history of Alzheimer's, I find this as one of the positives about having RLS/WED.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Appointment with Dr.Earley - lack of sleep detrimental o

Postby badnights » Mon Sep 07, 2015 3:46 am

we usually get less sleep than the general population. (He has a patient who gets only
three hours of sleep every night and is very high functioning.) However, this does not
mean that we will experience the dire health consequences predicted by those who
say we need 8 hours of sleep for good health and well-being.

As an aside, there was a study (more than one?) linking WED/RLS with higher morbidity .. . it seems we do actually die sooner, but who knows why.

Mainly I wanted to say something that's been on my mind a lot lately. When I'm exhausted and sleepy in the afternoon or evening, and I succumb to it (because 1 time out of 10 it works), and it doesn't work - well, you know how it goes: I lie down in blessed exhaustion, just as sleep arrives the thrumming tension in my bones also arrives, I shift position in the hopes it will end (because 1 time in 20 it does) and it doesn't so I get up, and this is the greatest agony, the brain is effectively asleep but the body needs to move, so for the next many hours I move I walk I do lunges and squats and force myself into as alert and active a state as possible because it's the only way to stay sane, and the whole time as I twitch and cold-sweat, I curse myself for having tried to lie down because it just makes it worse. At these times, I KNOW that I need sleep, I know with great conviction that my body is being harmed by lack of sleep.

Then about 6 or 10 hours later, I can't sleep for the life of me. The electrical implosion symptoms are gone, but I'm wide awake. I'm falling asleep as I read, but I'm wide awake. And I don't feel like I really need to sleep, I certainly don't feel as if I'm dying from lack of sleep, but I know that come tomorrow, if I make the mistake of trying to lie down at the wrong time, I will feel that way again, as if lack of sleep is doing me physical harm.

Which is the truth? I am sure I am harming myself, yet I know even as it's happening that I will not have that conviction at all in a few hours; and that I will have it again the next day, etc.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15742
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Appointment with Dr.Earley

Postby ViewsAskew » Mon Sep 07, 2015 4:46 am

It is such a strange dichotomy, isn't it?
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 5289
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Appointment with Dr.Earley

Postby badnights » Mon Sep 07, 2015 4:49 am

yup.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 7554
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Appointment with Dr.Earley - lack of sleep detrimental o

Postby Polar Bear » Mon Sep 07, 2015 1:25 pm

badnights wrote:
we usually get less sleep than the general population. (He has a patient who gets only
three hours of sleep every night and is very high functioning.) However, this does not
mean that we will experience the dire health consequences predicted by those who
say we need 8 hours of sleep for good health and well-being.

As an aside, there was a study (more than one?) linking WED/RLS with higher morbidity .. . it seems we do actually die sooner, but who knows why.

Mainly I wanted to say something that's been on my mind a lot lately. When I'm exhausted and sleepy in the afternoon or evening, and I succumb to it (because 1 time out of 10 it works), and it doesn't work - well, you know how it goes: I lie down in blessed exhaustion, just as sleep arrives the thrumming tension in my bones also arrives, I shift position in the hopes it will end (because 1 time in 20 it does) and it doesn't so I get up, and this is the greatest agony, the brain is effectively asleep but the body needs to move, so for the next many hours I move I walk I do lunges and squats and force myself into as alert and active a state as possible because it's the only way to stay sane, and the whole time as I twitch and cold-sweat, I curse myself for having tried to lie down because it just makes it worse. At these times, I KNOW that I need sleep, I know with great conviction that my body is being harmed by lack of sleep.

Then about 6 or 10 hours later, I can't sleep for the life of me. The electrical implosion symptoms are gone, but I'm wide awake. I'm falling asleep as I read, but I'm wide awake. And I don't feel like I really need to sleep, I certainly don't feel as if I'm dying from lack of sleep, but I know that come tomorrow, if I make the mistake of trying to lie down at the wrong time, I will feel that way again, as if lack of sleep is doing me physical harm.

Which is the truth? I am sure I am harming myself, yet I know even as it's happening that I will not have that conviction at all in a few hours; and that I will have it again the next day, etc.


Absolutely..... !!!
A wonderfully clear description
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

tea4one
Posts: 47
Joined: Thu Feb 24, 2011 6:43 pm

Re: Appointment with Dr.Earley

Postby tea4one » Wed Sep 09, 2015 7:20 pm

I'm glad you found Dr. Earley. My symptoms and quality of life have improved since seeing him.
Opiodes have their own set of characteristics, but nothing like the DA's. Good luck and stay well.


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