Re: sounds like narcolepsy (was: Dena's Mom)

[Guest guest]

This sounds like narcolepsy. In PD and related disorders, the

sleep/wake cycle can get out of whack. I don't know how narcolepsy

is diagnosed; you could investigate this through web research, by

calling a narcolepsy research dept, or by asking a sleep center. You

might treat narcolepsy the same way you do fatigue -- Provigil or

other psychostimulants. Best bet is to call your mother's

neurologist.

Another possible explanation for the eyes not opening is

blepharospasm. But that wouldn't account for her not being able to

hear or seeming like she's asleep.

Sounds like she was asleep! I don't think this is the beginning of

the end.

>

> Hi Everyone

>

> Just wanted to let you all know about something that

> seemed strange to me today. My husband is on vacation

> and we went together to see my mom today. She was in

> her usual position. Her eyes closed and slumped over

> to one side. She did not open her eyes or try to open

> them the whole time we were there, which is usual now.

> But what was weird is I clapped my hands four or five

> times right next to her and she did not respond at

> all. I would think that if she was asleep she would

> have at least flinched at least. I repeated this again

> before we left and got the same no reaction. Can

> someone go deaf all of a sudden? Or is this just

> another phase of LBD? Even when she is shaken on the

> shoulder she does not rouse. I do feel like this is

> the beginning of the end, but I have felt like that so

> many many times before, so I try not to speculate any

> longer. It just gets me all upset and I get so anxious

> and I can't do anything about it anyway so I try not

> to go down that road. If anyone has any thoughts or

> has watched this happen before, please let me know.

>

> Dena in So CA

> Mother (84) Living with LBS in NH

>

>

[Guest guest]

I agree. This sleep that people can't be roused from even with

painful stimuli is a really emerging area in DLB. We were having

these attacks on a daily basis a year ago. We don't have them

anymore, because we have dextroamphetamine and Provigil. We also

don't have hallucinations anymore, either.

These drugs are rapidly effective, don't have a lot of drug/drug

interactions, and are generally well-tolerated. If I had known then

what I have learned about these agents, I would have been FAR less

hesitant about them; we started using them before Cal even *had* a

DLB diagnosis, and the difference was like flipping a light switch.

[Guest guest]

Hi Robyn

Thanks for your insight. I will add these to my list

of things to check for today. It is strange I will say

that. My list is growing. Ear Wax, new drugs, and

Narcolepsy. I will also check and see if she is

sleeping at night. Maybe she has her days and nights

mixed up. I will let you all know what I find out.

Dena in So CA

Mother (84) Living with LBD in NH

--- rriddle_travel wrote:

> This sounds like narcolepsy. In PD and related

> disorders, the

> sleep/wake cycle can get out of whack. I don't know

> how narcolepsy

> is diagnosed; you could investigate this through web

> research, by

> calling a narcolepsy research dept, or by asking a

> sleep center. You

> might treat narcolepsy the same way you do fatigue

> -- Provigil or

> other psychostimulants. Best bet is to call your

> mother's

> neurologist.

>

> Another possible explanation for the eyes not

> opening is

> blepharospasm. But that wouldn't account for her

> not being able to

> hear or seeming like she's asleep.

>

> Sounds like she was asleep! I don't think this is

> the beginning of

> the end.

>

>

>

> >

> > Hi Everyone

> >

> > Just wanted to let you all know about something

> that

> > seemed strange to me today. My husband is on

> vacation

> > and we went together to see my mom today. She was

> in

> > her usual position. Her eyes closed and slumped

> over

> > to one side. She did not open her eyes or try to

> open

> > them the whole time we were there, which is usual

> now.

> > But what was weird is I clapped my hands four or

> five

> > times right next to her and she did not respond at

> > all. I would think that if she was asleep she

> would

> > have at least flinched at least. I repeated this

> again

> > before we left and got the same no reaction. Can

> > someone go deaf all of a sudden? Or is this just

> > another phase of LBD? Even when she is shaken on

> the

> > shoulder she does not rouse. I do feel like this

> is

> > the beginning of the end, but I have felt like

> that so

> > many many times before, so I try not to speculate

> any

> > longer. It just gets me all upset and I get so

> anxious

> > and I can't do anything about it anyway so I try

> not

> > to go down that road. If anyone has any thoughts

> or

> > has watched this happen before, please let me

> know.

> >

> > Dena in So CA

> > Mother (84) Living with LBS in NH

> >

> >

>

>

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[Guest guest]

Just to clarify; the symptoms are *like* narcolepsy, but narcolepsy

is a diagnosis that is usually not found in conjunction with another

disease - these people fall asleep for no good reason. The cataplexy,

the hallucinations, the sudden, irresistible daytime sleepiness, the

sleep behavior, the paralysis - all of it stems from a deficiency in

orexin/hypocretin, usually caused by either a genetic cause or an

autoimmune one. Narcoleptics have otherwise normal mental function

(once you treat the chronic sleep deficiency).

This is closer to the PD-related sleep research that UCLA published

and was nice enough to post the link to while I was

traveling. The deficits in acetylcholine *and* the damage to the

orexin/hypocretin-producing neurons give people with PD and PD+Plus

disorders bad sleep.

Earwax is easy to solve - people who don't specialize in sleep

medicine may be VERY hesitant to use these wakefulness promoting

drugs, but once they find how incredibly well-tolerated and effective

they are in this phenomenon, they come around.