Re: excessive sleep/Olga

[Guest guest]

Hi Olga,

I am sorry to hear all you are going through. It's not easy, I know. Since you

are in a flat with stairs and the bathroom is between floors, it is going to

start getting harder on you, and you say you panic now. You don't want your

husband to fall down the stairs. I don't know what his diagnosis is, but you

have to start thinking of his safety before other complications arise from

falls. Make life easier on yourself and him, so you are not stressing out too

much. You need to take care of your health too. I hope you can find some

solutions for yours and your husband's safety.

Some of your husband's symptoms are similar to LBD symptoms;  but  he would have

to have 3 core symptoms to qualify for a diagnosis of LBD.

Rivastigmine is the " Exelon Patch " The doctor is giving him memory medication,

common for dementia.

It could be Alzheimers, it could be any kind of dementia. The wandering and

UTIs are common with dementia. Constipation could be caused from other

medications he may be on, and is also common with LBD patients.

Here are the core features of LBD, which would be in a diagnosis for LBD:

 

Core features: 

* Fluctuating cognition with pronounced variations in attention and alertness.

* Recurrent complex visual hallucinations, typically well formed and detailed.

* Spontaneous features of parkinsonism.

* http://www.lbda.org/content/symptoms

Jan Colello, San Francisco Bay Area, East Bay

Husband, Jim, dx w/PDD/LBD Oct. 2003

Deceased, January 2011

________________________________

To: LBDcaregivers

Sent: Saturday, December 17, 2011 5:39 PM

Subject: excessive sleep

What is precisely meant by this?

My husband was fairly reasonable. Than after one of his wanders he got a

UTI (urinary infection), which put in 2 hospitals for 4 weeks (with a

week's break in between). He just couldn't wake up and couldn't walk.

Then a week out of the hospital, he wandered off for about 4 hours and came

home on his own, and started to get drowsy, until finally he couldn't walk

again or he couldn't be woken up to walk. I got some antibiotics for him,

which seemed to help for about 3 days, but then he started getting

unwakable again. So, I sent him to the hospital again. The hospital seem a

bit annoyed. They say all it was is constipation. I of course panic a bit

because our rented flat has stairs and the bathroom is in between 2 floors.

Does this sound like LBD or is it something else (perhaps in conjunction

with LBD)? I mean there's excessive sleep (as in being overtired, whether

for a reason or not) and then there's this unwakable, debilitating sleep.

Is this LBD or something else?

Also, during his UTI episode, they finally started him on Rivastigmine.

Could it be causing all the trouble?

Any thoughts are greatly appreciated.

Thanks,

Olga

[Guest guest]

Hi Olga,

I am sorry to hear all you are going through. It's not easy, I know. Since you

are in a flat with stairs and the bathroom is between floors, it is going to

start getting harder on you, and you say you panic now. You don't want your

husband to fall down the stairs. I don't know what his diagnosis is, but you

have to start thinking of his safety before other complications arise from

falls. Make life easier on yourself and him, so you are not stressing out too

much. You need to take care of your health too. I hope you can find some

solutions for yours and your husband's safety.

Some of your husband's symptoms are similar to LBD symptoms;  but  he would have

to have 3 core symptoms to qualify for a diagnosis of LBD.

Rivastigmine is the " Exelon Patch " The doctor is giving him memory medication,

common for dementia.

It could be Alzheimers, it could be any kind of dementia. The wandering and

UTIs are common with dementia. Constipation could be caused from other

medications he may be on, and is also common with LBD patients.

Here are the core features of LBD, which would be in a diagnosis for LBD:

Core features: 

* Fluctuating cognition with pronounced variations in attention and alertness.

* Recurrent complex visual hallucinations, typically well formed and detailed.

* Spontaneous features of parkinsonism.

* http://www.lbda.org/content/symptoms

Jan Colello, San Francisco Bay Area, East Bay

Husband, Jim, dx w/PDD/LBD Oct. 2003

Deceased, January 2011

________________________________

To: LBDcaregivers

Sent: Saturday, December 17, 2011 5:39 PM

Subject: excessive sleep

What is precisely meant by this?

My husband was fairly reasonable. Than after one of his wanders he got a

UTI (urinary infection), which put in 2 hospitals for 4 weeks (with a

week's break in between). He just couldn't wake up and couldn't walk.

Then a week out of the hospital, he wandered off for about 4 hours and came

home on his own, and started to get drowsy, until finally he couldn't walk

again or he couldn't be woken up to walk. I got some antibiotics for him,

which seemed to help for about 3 days, but then he started getting

unwakable again. So, I sent him to the hospital again. The hospital seem a

bit annoyed. They say all it was is constipation. I of course panic a bit

because our rented flat has stairs and the bathroom is in between 2 floors.

Does this sound like LBD or is it something else (perhaps in conjunction

with LBD)? I mean there's excessive sleep (as in being overtired, whether

for a reason or not) and then there's this unwakable, debilitating sleep.

Is this LBD or something else?

Also, during his UTI episode, they finally started him on Rivastigmine.

Could it be causing all the trouble?

Any thoughts are greatly appreciated.

Thanks,

Olga

[Guest guest]

Hi Olga,

There doesn't seem to be any really bad reactions to Rivastigmine. It is listed

under Good Medications for LBD: In the LBD

files. http://health.groups.yahoo.com/group/LBDcaregivers/files/Medications/

Rivastigmine (sold under the trade name Exelon) is a parasympathomimetic or

cholinergic agent.

 

The only side effects stated are listed below:

*The drug can be administered orally or via a transdermal patch; the latter form

reduces the prevalence of side effects,[1] which typically include nausea and

vomiting. For example, the presence of hallucinations appears to be a predictor

of especially strong responses to rivastigmine, both in Alzheimer’s and

Parkinson's disease patients.

[2] The drug is eliminated through the urine, and appears to have relatively few

drug-drug interactions.[2]

In 2006, it became the first product approved globally for the treatment of mild

to moderate dementia associated with Parkinson's Disease;  and in 2007 the

rivastigmine transdermal patch became the first patch treatment for dementia.

I only had good experiences with Exelon for my husband.

 

My husband had fainting spells once or twice a month and would be unconscious

and not responding for several minutes, but not 6 days. He didn't sleep in that

deep of a sleep. There were days when he would sleep several hours, but I could

wake him up. Only once when he had a bad reaction to Klonopin did he not wake up

or respond for an entire day, but not 6 days. My husband had an allergic

reaction to Klonopin. If your husband is not responding for 6 days, there may be

a medication he is on that he is having a reaction to. Is he on any of the " Bad

Medications for LBD, listed in the LBD files?

http://health.groups.yahoo.com/group/LBDcaregivers/files/Medications/

 

My husband was a lot older than me too. I hope you find your answers, sorry I

may not be able to help you; as I do not relate to 6 days without responding or

any side effects with Rivastigmine.

Take Care Olga, and best of luck in finding your answers.

 

Jan Colello, San Francisco Bay Area, East Bay

Husband, Jim, dx w/PDD/LBD Oct. 2003

Deceased, January 2011

 

________________________________

To: LBDcaregivers

Sent: Sunday, December 18, 2011 4:33 PM

Subject: excessive sleep

Hello everyone,

Thank you to Janet and Donna for their replies.

I am satisfied my husband has LBD: years of disturbed/active sleep,

hallucinations of people and animals, Capgras, reduplicative paramnesia,

cognitive impairment vs. memory loss, possible onset of Parkisonism just

now. And we have the official diagnosis from the National Neurological

Hospital.

I'm much younger than him and we live in London, where things might be a

bit easier in certain respects.

Before I married him I cared for a friend who had Alzheimer's (in my

estimation). And, my god, what a comparatively easy ride that was. But I do

have a first-hand experience with a different dementia.

What I'd like to know, if anyone has encountered this... Is it known for

LBD to cause unwakable sleep, say, for 6 days? So I can't wake him up and

persuade him to walk anywhere? I took him to the hospital very late on

Tuesday and every time I'd visit he'd be sleeping through the entire visit;

talks in his sleep and eats in his sleep. Wouldn't leave the bed. Today,

Sunday, was the first day he was awake. Chattering away nonsense but awake,

which is all that matters to me right now.

Another thing I would like to know, if anyone has observed this, ?

And if so, what kind of problems?

I have the diagnosis and I'm apprehensive of unmanageable practical

problems. But it's difficult making decisions without understanding what's

LBD and what's not.

Again, any thoughts are greatly appreciated,

Many thanks,

Olga