Re: It's 2:30AM!

[Guest guest]

Jan,

I don't know why the MD would call it fainting? My son had seizures and it

sounds a whole lot more like seizures. Has his regular MD sent him for any kind

of tests when he has these? If it is a stroke it should be able to be seen and

if it is seizures they should know that.

I don't think you should have to " get use to seeing " these. Do you know what

happens to his blood pressure at these times? I don't even know why I asked

that. What I do know is if it is seizures, he needs help or he may not come

out of these or at least that what they told me.

Sorry you are having this at all hours.

Donna R

It's 2:30AM!

[Guest guest]

Jan,

I don't know why the MD would call it fainting? My son had seizures and it

sounds a whole lot more like seizures. Has his regular MD sent him for any kind

of tests when he has these? If it is a stroke it should be able to be seen and

if it is seizures they should know that.

I don't think you should have to " get use to seeing " these. Do you know what

happens to his blood pressure at these times? I don't even know why I asked

that. What I do know is if it is seizures, he needs help or he may not come

out of these or at least that what they told me.

Sorry you are having this at all hours.

Donna R

It's 2:30AM!

[Guest guest]

Jan, this struck a chord whith me because firstly this used to happen to granda

and secondly i work with mental health patients who this happens to.

We were told that granda didn't have seizures when this happened but as this is

part of the field i work in i knew differently. Also sometimes when epilepsy

occurs no matter how mild or severe small TIA's can occur at the very same time

and unless the seizure is severe it won't always show up on EEG.

We always had to argue for granda when this happened and as the medical field is

so devoid of info into LBD you sometimes feel as if your banging your head off a

brick wall, we were forunate that my granda's consultant turned out to be

somewhat of an expert on LBD and explained that YES seizures are a rare effect

of the disease. The only thing was that granda was never given meds to combat

this as it was felt that the cocktail of drugs sufferers already take then to

add something else would be too much, on the up-side they did go away after a

while. hope this helps.

.x

It's 2:30AM!

Hi,

I just need to talk. Jim woke up about an hour ago and

was having a bad hallucination that a man leapt on top

of him in bed. He was afraid. He said he had to go to

the bathroom, so I helped him up out of bed and

transfered him to his transport chair and when I

brought him into the bathroom he was having a hard

time standing up from his chair, but I managed to get

him down on the toilet and then he went into one of

those seizures, but it's not a seizure, because he had

an eeg and it was negative. His entire body, arms and

legs thrash about and his eyes roll back into his head

and then he throws his head back and goes totally

stiff and into a stare that he can't come out of for

awhile, but then slowly comes around. The doctor

thinks it's fainting, but he hasn't actually seen it

and I think it is a TIA. This time when he came out of

it, his entire face was drooping down and he slurred

his speech. Usually he comes out of these things

seeming ok and not knowing what happened and acts as

if nothing has happened. I am going to keep an eye on

him for the next few hours and see how he is. I hate

when he goes into a stupor like this, they are scary

to me, but I am getting used to seeing them and don't

panic as much as I did when they first started

happening. If it is fainting, what are some of the

things that you do to help prevent it from happening

for those that are experienced with fainting LOs.

There is never a dull moment with this disease!.........Jan

__________________________________________________

[Guest guest]

Jan, this struck a chord whith me because firstly this used to happen to granda

and secondly i work with mental health patients who this happens to.

We were told that granda didn't have seizures when this happened but as this is

part of the field i work in i knew differently. Also sometimes when epilepsy

occurs no matter how mild or severe small TIA's can occur at the very same time

and unless the seizure is severe it won't always show up on EEG.

We always had to argue for granda when this happened and as the medical field is

so devoid of info into LBD you sometimes feel as if your banging your head off a

brick wall, we were forunate that my granda's consultant turned out to be

somewhat of an expert on LBD and explained that YES seizures are a rare effect

of the disease. The only thing was that granda was never given meds to combat

this as it was felt that the cocktail of drugs sufferers already take then to

add something else would be too much, on the up-side they did go away after a

while. hope this helps.

.x

It's 2:30AM!

Hi,

I just need to talk. Jim woke up about an hour ago and

was having a bad hallucination that a man leapt on top

of him in bed. He was afraid. He said he had to go to

the bathroom, so I helped him up out of bed and

transfered him to his transport chair and when I

brought him into the bathroom he was having a hard

time standing up from his chair, but I managed to get

him down on the toilet and then he went into one of

those seizures, but it's not a seizure, because he had

an eeg and it was negative. His entire body, arms and

legs thrash about and his eyes roll back into his head

and then he throws his head back and goes totally

stiff and into a stare that he can't come out of for

awhile, but then slowly comes around. The doctor

thinks it's fainting, but he hasn't actually seen it

and I think it is a TIA. This time when he came out of

it, his entire face was drooping down and he slurred

his speech. Usually he comes out of these things

seeming ok and not knowing what happened and acts as

if nothing has happened. I am going to keep an eye on

him for the next few hours and see how he is. I hate

when he goes into a stupor like this, they are scary

to me, but I am getting used to seeing them and don't

panic as much as I did when they first started

happening. If it is fainting, what are some of the

things that you do to help prevent it from happening

for those that are experienced with fainting LOs.

There is never a dull moment with this disease!.........Jan

__________________________________________________

[Guest guest]

Hi Jan-

This is the first time that I have jumped in here, but the seizures struck a

chord with me, too. When my father first got sick with LBD (7 years ago) it all

started for him with seizures. They were scary and disorienting for him and he

always seemed to lose a lot of memory each time. We were all baflled and

terrified and ran him to the ER each time. Once all was said and done and he

was finally diagnosed with LBD by the Mayo Clinic in Rochester MN we learned

that these are actually called Spells. Sounds very southern to me. I do

declare! Anyway, the doctors at Mayo were very interested in him because of the

Spells. They put him in their research group and boy does he get the works out

there each year. He was prescribed an anti-seizure drug which really helped.

At this point we don't think he has them anymore, but he does have " jolts " where

his arms or legs jump while he is sitting. Usually when he is very calm. I

don't know if this helps but just thought that I would jump in there.

Janet

It's 2:30AM!

Hi,

I just need to talk. Jim woke up about an hour ago and

was having a bad hallucination that a man leapt on top

of him in bed. He was afraid. He said he had to go to

the bathroom, so I helped him up out of bed and

transfered him to his transport chair and when I

brought him into the bathroom he was having a hard

time standing up from his chair, but I managed to get

him down on the toilet and then he went into one of

those seizures, but it's not a seizure, because he had

an eeg and it was negative. His entire body, arms and

legs thrash about and his eyes roll back into his head

and then he throws his head back and goes totally

stiff and into a stare that he can't come out of for

awhile, but then slowly comes around. The doctor

thinks it's fainting, but he hasn't actually seen it

and I think it is a TIA. This time when he came out of

it, his entire face was drooping down and he slurred

his speech. Usually he comes out of these things

seeming ok and not knowing what happened and acts as

if nothing has happened. I am going to keep an eye on

him for the next few hours and see how he is. I hate

when he goes into a stupor like this, they are scary

to me, but I am getting used to seeing them and don't

panic as much as I did when they first started

happening. If it is fainting, what are some of the

things that you do to help prevent it from happening

for those that are experienced with fainting LOs.

There is never a dull moment with this disease!.........Jan

__________________________________________________

[Guest guest]

Hi Jan-

This is the first time that I have jumped in here, but the seizures struck a

chord with me, too. When my father first got sick with LBD (7 years ago) it all

started for him with seizures. They were scary and disorienting for him and he

always seemed to lose a lot of memory each time. We were all baflled and

terrified and ran him to the ER each time. Once all was said and done and he

was finally diagnosed with LBD by the Mayo Clinic in Rochester MN we learned

that these are actually called Spells. Sounds very southern to me. I do

declare! Anyway, the doctors at Mayo were very interested in him because of the

Spells. They put him in their research group and boy does he get the works out

there each year. He was prescribed an anti-seizure drug which really helped.

At this point we don't think he has them anymore, but he does have " jolts " where

his arms or legs jump while he is sitting. Usually when he is very calm. I

don't know if this helps but just thought that I would jump in there.

Janet

It's 2:30AM!

Hi,

I just need to talk. Jim woke up about an hour ago and

was having a bad hallucination that a man leapt on top

of him in bed. He was afraid. He said he had to go to

the bathroom, so I helped him up out of bed and

transfered him to his transport chair and when I

brought him into the bathroom he was having a hard

time standing up from his chair, but I managed to get

him down on the toilet and then he went into one of

those seizures, but it's not a seizure, because he had

an eeg and it was negative. His entire body, arms and

legs thrash about and his eyes roll back into his head

and then he throws his head back and goes totally

stiff and into a stare that he can't come out of for

awhile, but then slowly comes around. The doctor

thinks it's fainting, but he hasn't actually seen it

and I think it is a TIA. This time when he came out of

it, his entire face was drooping down and he slurred

his speech. Usually he comes out of these things

seeming ok and not knowing what happened and acts as

if nothing has happened. I am going to keep an eye on

him for the next few hours and see how he is. I hate

when he goes into a stupor like this, they are scary

to me, but I am getting used to seeing them and don't

panic as much as I did when they first started

happening. If it is fainting, what are some of the

things that you do to help prevent it from happening

for those that are experienced with fainting LOs.

There is never a dull moment with this disease!.........Jan

__________________________________________________

[Guest guest]

This is what Liam did when they gave him 2 doses of Ativan in the hospital.

Simmel

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: It's 2:30AM!

>Date: Fri, 26 Aug 2005 02:51:23 -0700 (PDT)

>

>Hi,

>I just need to talk. Jim woke up about an hour ago and

>was having a bad hallucination that a man leapt on top

>of him in bed. He was afraid. He said he had to go to

>the bathroom, so I helped him up out of bed and

>transfered him to his transport chair and when I

>brought him into the bathroom he was having a hard

>time standing up from his chair, but I managed to get

>him down on the toilet and then he went into one of

>those seizures, but it's not a seizure, because he had

>an eeg and it was negative. His entire body, arms and

>legs thrash about and his eyes roll back into his head

>and then he throws his head back and goes totally

>stiff and into a stare that he can't come out of for

>awhile, but then slowly comes around. The doctor

>thinks it's fainting, but he hasn't actually seen it

>and I think it is a TIA. This time when he came out of

>it, his entire face was drooping down and he slurred

>his speech. Usually he comes out of these things

>seeming ok and not knowing what happened and acts as

>if nothing has happened. I am going to keep an eye on

>him for the next few hours and see how he is. I hate

>when he goes into a stupor like this, they are scary

>to me, but I am getting used to seeing them and don't

>panic as much as I did when they first started

>happening. If it is fainting, what are some of the

>things that you do to help prevent it from happening

>for those that are experienced with fainting LOs.

>There is never a dull moment with this disease!.........Jan

>

>__________________________________________________

>

[Guest guest]

Jan-

My Dad had some seizure activity when his Aricept was increased from 5 mg. to 10

mg. It was reduced back to 5 mg. and the problem resolved.

Jan, talk all you want to. That is what we are here for.

Gerry

It's 2:30AM!

Hi,

I just need to talk. Jim woke up about an hour ago and

was having a bad hallucination that a man leapt on top

of him in bed. He was afraid. He said he had to go to

the bathroom, so I helped him up out of bed and

transfered him to his transport chair and when I

brought him into the bathroom he was having a hard

time standing up from his chair, but I managed to get

him down on the toilet and then he went into one of

those seizures, but it's not a seizure, because he had

an eeg and it was negative. His entire body, arms and

legs thrash about and his eyes roll back into his head

and then he throws his head back and goes totally

stiff and into a stare that he can't come out of for

awhile, but then slowly comes around. The doctor

thinks it's fainting, but he hasn't actually seen it

and I think it is a TIA. This time when he came out of

it, his entire face was drooping down and he slurred

his speech. Usually he comes out of these things

seeming ok and not knowing what happened and acts as

if nothing has happened. I am going to keep an eye on

him for the next few hours and see how he is. I hate

when he goes into a stupor like this, they are scary

to me, but I am getting used to seeing them and don't

panic as much as I did when they first started

happening. If it is fainting, what are some of the

things that you do to help prevent it from happening

for those that are experienced with fainting LOs.

There is never a dull moment with this disease!.........Jan

__________________________________________________

[Guest guest]

Jan-

My Dad had some seizure activity when his Aricept was increased from 5 mg. to 10

mg. It was reduced back to 5 mg. and the problem resolved.

Jan, talk all you want to. That is what we are here for.

Gerry

It's 2:30AM!

Hi,

I just need to talk. Jim woke up about an hour ago and

was having a bad hallucination that a man leapt on top

of him in bed. He was afraid. He said he had to go to

the bathroom, so I helped him up out of bed and

transfered him to his transport chair and when I

brought him into the bathroom he was having a hard

time standing up from his chair, but I managed to get

him down on the toilet and then he went into one of

those seizures, but it's not a seizure, because he had

an eeg and it was negative. His entire body, arms and

legs thrash about and his eyes roll back into his head

and then he throws his head back and goes totally

stiff and into a stare that he can't come out of for

awhile, but then slowly comes around. The doctor

thinks it's fainting, but he hasn't actually seen it

and I think it is a TIA. This time when he came out of

it, his entire face was drooping down and he slurred

his speech. Usually he comes out of these things

seeming ok and not knowing what happened and acts as

if nothing has happened. I am going to keep an eye on

him for the next few hours and see how he is. I hate

when he goes into a stupor like this, they are scary

to me, but I am getting used to seeing them and don't

panic as much as I did when they first started

happening. If it is fainting, what are some of the

things that you do to help prevent it from happening

for those that are experienced with fainting LOs.

There is never a dull moment with this disease!.........Jan

__________________________________________________

[Guest guest]

Hi Jan,

I wanted to agree with Donna. My son's girlfriend has epilepsy and what

you discribed sounds so much like what happens to her - I'm not saying

that Jim has it just that the seizures sound so familiar.

I'd be tempted to get a second opinion.

Hang in there my friend.

Courage