Appointment with Dr.Earley

[Orrel]

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]

So glad you had a good appointment with him.

[Yankiwi]

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]

This is indeed a positive comment from Dr Early.

[Rustsmith]

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

[badnights]

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.

[ViewsAskew]

It is such a strange dichotomy, isn't it?

[badnights]

yup.

[Polar Bear]

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

[tea4one]

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.