Falling asleep abnormally

[Guest guest]

Hello everyone,

I’ve been dealing with symptoms for a few years now on and off. It’s

something that a dear friend from our group had problems with and now another

has had similar symptoms. My two friends had Lupus though. I’ve posted a

little about it but I’m going to post again and ask if anyone that has these

symptoms too will reply.

At least five years ago I started falling asleep during the day suddenly as if I

had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When this first

started I took it as needing to sleep and would just do so. I was married and my

husband always drove so although inconvenient that I was falling asleep in the

middle of anything at times, not too big an issue. It happened rarely and then

would go without happening for long periods of time. Months to even over a year

without an episode. Then a over a year and half ago it became more often. My

relationship ended and I then realized how much it would overtake me while

driving. I started talking to doctors but the usual first answer is medications.

Not until you say the word driving and falling asleep do you get real attention.

For over six months I voluntarily didn’t/ couldn’t drive because of these

episodes. Finally last winter one of my doctors said to me, we can’t always

find the cause but we must treat the symptoms. So, I was put on medication for

Narcolepsy daily and that has worked.

I did reading on Narcolepsy last year and my symptoms are the same, brought on

the with the same circumstances and now being controlled with medication,

thankfully. Part of the reason I’m asking is that my friend Kathleen was an

RN and always said if it were Narcolepsy the episodes would not come and go over

the years. She passed away this year without ever finding out the cause of hers

either.

Do any of you have these symptoms? It’s not just falling asleep, it’s that

suddenly I cannot keep my eyes open. It’s not my blood sugars, medications and

several other tests I’ve had done for epilepsy, etc. turn out fine so I’m

turning to you all because I have another friend now too experiencing some of

the similar issues.

If you have an thoughts, thank you.

[Guest guest]

I have random episodes at work when I just can't stay awake and like you say

it's to the point that I can't even keep them open of I tried. It happens way to

often when I drive. Any answers I would appreciate also. Thanks

Nik

Sent from my iPhone

> Hello everyone,

>

> I’ve been dealing with symptoms for a few years now on and off. It’s

something that a dear friend from our group had problems with and now another

has had similar symptoms. My two friends had Lupus though. I’ve posted a

little about it but I’m going to post again and ask if anyone that has these

symptoms too will reply.

>

> At least five years ago I started falling asleep during the day suddenly as if

I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When this

first started I took it as needing to sleep and would just do so. I was married

and my husband always drove so although inconvenient that I was falling asleep

in the middle of anything at times, not too big an issue. It happened rarely and

then would go without happening for long periods of time. Months to even over a

year without an episode. Then a over a year and half ago it became more often.

My relationship ended and I then realized how much it would overtake me while

driving. I started talking to doctors but the usual first answer is medications.

Not until you say the word driving and falling asleep do you get real attention.

For over six months I voluntarily didn’t/ couldn’t drive because of these

episodes. Finally last winter one of my doctors said to me, we can’t always

find the cause but we must treat the symptoms. So, I was put on medication for

Narcolepsy daily and that has worked.

>

> I did reading on Narcolepsy last year and my symptoms are the same, brought on

the with the same circumstances and now being controlled with medication,

thankfully. Part of the reason I’m asking is that my friend Kathleen was an RN

and always said if it were Narcolepsy the episodes would not come and go over

the years. She passed away this year without ever finding out the cause of hers

either.

>

> Do any of you have these symptoms? It’s not just falling asleep, it’s that

suddenly I cannot keep my eyes open. It’s not my blood sugars, medications and

several other tests I’ve had done for epilepsy, etc. turn out fine so I’m

turning to you all because I have another friend now too experiencing some of

the similar issues.

>

> If you have an thoughts, thank you.

>

>

[Guest guest]

That same thing has been my problem for the past five years. One doc says I have

a form of narcolepsy and he treated me for it but my problem is even though the

meds keep me awake I am still tired all the time. My eyes get so heavy and tired

I have to close them. But I'm still awake, halfway! Hope things get better!

------------------------------

>I used to have a major problem with falling asleep all the time, even though I

was sleeping at night. (I was born with stills, and this happened in my 30s.)

It turned out that my doctor diagnosed me with secondary fibromyalgia - which

caused me to not have quality sleep at all. I would nod off trying to take

dictation as a secretary. The medication he subscribed was flexeril - brand

name only - for its side effect of causing deep sleep. It was not a sleeping

pill, and didn't guarantee a good night - but the sleep was very deep. He

warned me to take it for the first time on a weekend, and I slept until late

afternoon the next day and felt wonderful for the first time in years.

>

>My insurance has stopped covering this - will only cover the generic which

doesn't have the same side effect. It helps, but not in the same way. I'm

experimenting with some herbal remedies as well as thinking good thoughts! My

cat seems to know when I'm in exceptional pain, and he'll fashion himself into a

little furry heating cushion to help ease the pain. What a guy!

>

>

>>

>> > Hello everyone,

>> >

>> > I’ve been dealing with symptoms for a few years now on and off.

It’s something that a dear friend from our group had problems with and

now another has had similar symptoms. My two friends had Lupus though.

I’ve posted a little about it but I’m going to post again and ask

if anyone that has these symptoms too will reply.

>> >

>> > At least five years ago I started falling asleep during the day suddenly as

if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When this

first started I took it as needing to sleep and would just do so. I was married

and my husband always drove so although inconvenient that I was falling asleep

in the middle of anything at times, not too big an issue. It happened rarely and

then would go without happening for long periods of time. Months to even over a

year without an episode. Then a over a year and half ago it became more often.

My relationship ended and I then realized how much it would overtake me while

driving. I started talking to doctors but the usual first answer is medications.

Not until you say the word driving and falling asleep do you get real attention.

For over six months I voluntarily didn’t/ couldn’t drive because

of these episodes. Finally last winter one of my doctors said to me, we

can’t

always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

>> >

>> > I did reading on Narcolepsy last year and my symptoms are the same, brought

on the with the same circumstances and now being controlled with medication,

thankfully. Part of the reason I’m asking is that my friend Kathleen was

an RN and always said if it were Narcolepsy the episodes would not come and go

over the years. She passed away this year without ever finding out the cause of

hers either.

>> >

>> > Do any of you have these symptoms? It’s not just falling asleep,

it’s that suddenly I cannot keep my eyes open. It’s not my blood

sugars, medications and several other tests I’ve had done for epilepsy,

etc. turn out fine so I’m turning to you all because I have another

friend now too experiencing some of the similar issues.

>> >

>> > If you have an thoughts, thank you.

>> >

>> >

[Guest guest]

That same thing has been my problem for the past five years. One doc says I have

a form of narcolepsy and he treated me for it but my problem is even though the

meds keep me awake I am still tired all the time. My eyes get so heavy and tired

I have to close them. But I'm still awake, halfway! Hope things get better!

------------------------------

>I used to have a major problem with falling asleep all the time, even though I

was sleeping at night. (I was born with stills, and this happened in my 30s.)

It turned out that my doctor diagnosed me with secondary fibromyalgia - which

caused me to not have quality sleep at all. I would nod off trying to take

dictation as a secretary. The medication he subscribed was flexeril - brand

name only - for its side effect of causing deep sleep. It was not a sleeping

pill, and didn't guarantee a good night - but the sleep was very deep. He

warned me to take it for the first time on a weekend, and I slept until late

afternoon the next day and felt wonderful for the first time in years.

>

>My insurance has stopped covering this - will only cover the generic which

doesn't have the same side effect. It helps, but not in the same way. I'm

experimenting with some herbal remedies as well as thinking good thoughts! My

cat seems to know when I'm in exceptional pain, and he'll fashion himself into a

little furry heating cushion to help ease the pain. What a guy!

>

>

>>

>> > Hello everyone,

>> >

>> > I’ve been dealing with symptoms for a few years now on and off.

It’s something that a dear friend from our group had problems with and

now another has had similar symptoms. My two friends had Lupus though.

I’ve posted a little about it but I’m going to post again and ask

if anyone that has these symptoms too will reply.

>> >

>> > At least five years ago I started falling asleep during the day suddenly as

if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When this

first started I took it as needing to sleep and would just do so. I was married

and my husband always drove so although inconvenient that I was falling asleep

in the middle of anything at times, not too big an issue. It happened rarely and

then would go without happening for long periods of time. Months to even over a

year without an episode. Then a over a year and half ago it became more often.

My relationship ended and I then realized how much it would overtake me while

driving. I started talking to doctors but the usual first answer is medications.

Not until you say the word driving and falling asleep do you get real attention.

For over six months I voluntarily didn’t/ couldn’t drive because

of these episodes. Finally last winter one of my doctors said to me, we

can’t

always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

>> >

>> > I did reading on Narcolepsy last year and my symptoms are the same, brought

on the with the same circumstances and now being controlled with medication,

thankfully. Part of the reason I’m asking is that my friend Kathleen was

an RN and always said if it were Narcolepsy the episodes would not come and go

over the years. She passed away this year without ever finding out the cause of

hers either.

>> >

>> > Do any of you have these symptoms? It’s not just falling asleep,

it’s that suddenly I cannot keep my eyes open. It’s not my blood

sugars, medications and several other tests I’ve had done for epilepsy,

etc. turn out fine so I’m turning to you all because I have another

friend now too experiencing some of the similar issues.

>> >

>> > If you have an thoughts, thank you.

>> >

>> >

[Guest guest]

Howdy ....I don't have trouble alike yours, but I am tired all day

and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

me at the moment. I had one Dr. think I was Narcoleptic but after all of

his " tests " and such he decided I wasn't. I never pass out while driving or

doing anything from reading a book to doing heavier work, but the moment I

lie down I can pass out in minutes, except at night!

Hope you get the answers you need soon! Kirk

> **

>

>

> Hello everyone,

>

> I’ve been dealing with symptoms for a few years now on and off. It’s

> something that a dear friend from our group had problems with and now

> another has had similar symptoms. My two friends had Lupus though. I’ve

> posted a little about it but I’m going to post again and ask if anyone that

> has these symptoms too will reply.

>

> At least five years ago I started falling asleep during the day suddenly

> as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> When this first started I took it as needing to sleep and would just do so.

> I was married and my husband always drove so although inconvenient that I

> was falling asleep in the middle of anything at times, not too big an

> issue. It happened rarely and then would go without happening for long

> periods of time. Months to even over a year without an episode. Then a over

> a year and half ago it became more often. My relationship ended and I then

> realized how much it would overtake me while driving. I started talking to

> doctors but the usual first answer is medications. Not until you say the

> word driving and falling asleep do you get real attention. For over six

> months I voluntarily didn’t/ couldn’t drive because of these episodes.

> Finally last winter one of my doctors said to me, we can’t always find the

> cause but we must treat the symptoms. So, I was put on medication for

> Narcolepsy daily and that has worked.

>

> I did reading on Narcolepsy last year and my symptoms are the same,

> brought on the with the same circumstances and now being controlled with

> medication, thankfully. Part of the reason I’m asking is that my friend

> Kathleen was an RN and always said if it were Narcolepsy the episodes would

> not come and go over the years. She passed away this year without ever

> finding out the cause of hers either.

>

> Do any of you have these symptoms? It’s not just falling asleep, it’s that

> suddenly I cannot keep my eyes open. It’s not my blood sugars, medications

> and several other tests I’ve had done for epilepsy, etc. turn out fine so

> I’m turning to you all because I have another friend now too experiencing

> some of the similar issues.

>

> If you have an thoughts, thank you.

>

>

[Guest guest]

Howdy ....I don't have trouble alike yours, but I am tired all day

and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

me at the moment. I had one Dr. think I was Narcoleptic but after all of

his " tests " and such he decided I wasn't. I never pass out while driving or

doing anything from reading a book to doing heavier work, but the moment I

lie down I can pass out in minutes, except at night!

Hope you get the answers you need soon! Kirk

> **

>

>

> Hello everyone,

>

> I’ve been dealing with symptoms for a few years now on and off. It’s

> something that a dear friend from our group had problems with and now

> another has had similar symptoms. My two friends had Lupus though. I’ve

> posted a little about it but I’m going to post again and ask if anyone that

> has these symptoms too will reply.

>

> At least five years ago I started falling asleep during the day suddenly

> as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> When this first started I took it as needing to sleep and would just do so.

> I was married and my husband always drove so although inconvenient that I

> was falling asleep in the middle of anything at times, not too big an

> issue. It happened rarely and then would go without happening for long

> periods of time. Months to even over a year without an episode. Then a over

> a year and half ago it became more often. My relationship ended and I then

> realized how much it would overtake me while driving. I started talking to

> doctors but the usual first answer is medications. Not until you say the

> word driving and falling asleep do you get real attention. For over six

> months I voluntarily didn’t/ couldn’t drive because of these episodes.

> Finally last winter one of my doctors said to me, we can’t always find the

> cause but we must treat the symptoms. So, I was put on medication for

> Narcolepsy daily and that has worked.

>

> I did reading on Narcolepsy last year and my symptoms are the same,

> brought on the with the same circumstances and now being controlled with

> medication, thankfully. Part of the reason I’m asking is that my friend

> Kathleen was an RN and always said if it were Narcolepsy the episodes would

> not come and go over the years. She passed away this year without ever

> finding out the cause of hers either.

>

> Do any of you have these symptoms? It’s not just falling asleep, it’s that

> suddenly I cannot keep my eyes open. It’s not my blood sugars, medications

> and several other tests I’ve had done for epilepsy, etc. turn out fine so

> I’m turning to you all because I have another friend now too experiencing

> some of the similar issues.

>

> If you have an thoughts, thank you.

>

>

[Guest guest]

I believe you would be considered to be nocturnal. More like a cat, lol

a

From: Kirk Bonanny

Sent: Wednesday, June 13, 2012 11:08 PM

To: Stillsdisease

Subject: Re: Falling asleep abnormally

Howdy ....I don't have trouble alike yours, but I am tired all day

and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

me at the moment. I had one Dr. think I was Narcoleptic but after all of

his " tests " and such he decided I wasn't. I never pass out while driving or

doing anything from reading a book to doing heavier work, but the moment I

lie down I can pass out in minutes, except at night!

Hope you get the answers you need soon! Kirk

> **

>

>

> Hello everyone,

>

> I’ve been dealing with symptoms for a few years now on and off. It’s

> something that a dear friend from our group had problems with and now

> another has had similar symptoms. My two friends had Lupus though. I’ve

> posted a little about it but I’m going to post again and ask if anyone that

> has these symptoms too will reply.

>

> At least five years ago I started falling asleep during the day suddenly

> as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> When this first started I took it as needing to sleep and would just do so.

> I was married and my husband always drove so although inconvenient that I

> was falling asleep in the middle of anything at times, not too big an

> issue. It happened rarely and then would go without happening for long

> periods of time. Months to even over a year without an episode. Then a over

> a year and half ago it became more often. My relationship ended and I then

> realized how much it would overtake me while driving. I started talking to

> doctors but the usual first answer is medications. Not until you say the

> word driving and falling asleep do you get real attention. For over six

> months I voluntarily didn’t/ couldn’t drive because of these episodes.

> Finally last winter one of my doctors said to me, we can’t always find the

> cause but we must treat the symptoms. So, I was put on medication for

> Narcolepsy daily and that has worked.

>

> I did reading on Narcolepsy last year and my symptoms are the same,

> brought on the with the same circumstances and now being controlled with

> medication, thankfully. Part of the reason I’m asking is that my friend

> Kathleen was an RN and always said if it were Narcolepsy the episodes would

> not come and go over the years. She passed away this year without ever

> finding out the cause of hers either.

>

> Do any of you have these symptoms? It’s not just falling asleep, it’s that

> suddenly I cannot keep my eyes open. It’s not my blood sugars, medications

> and several other tests I’ve had done for epilepsy, etc. turn out fine so

> I’m turning to you all because I have another friend now too experiencing

> some of the similar issues.

>

> If you have an thoughts, thank you.

>

>

[Guest guest]

I believe you would be considered to be nocturnal. More like a cat, lol

a

From: Kirk Bonanny

Sent: Wednesday, June 13, 2012 11:08 PM

To: Stillsdisease

Subject: Re: Falling asleep abnormally

Howdy ....I don't have trouble alike yours, but I am tired all day

and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

me at the moment. I had one Dr. think I was Narcoleptic but after all of

his " tests " and such he decided I wasn't. I never pass out while driving or

doing anything from reading a book to doing heavier work, but the moment I

lie down I can pass out in minutes, except at night!

Hope you get the answers you need soon! Kirk

> **

>

>

> Hello everyone,

>

> I’ve been dealing with symptoms for a few years now on and off. It’s

> something that a dear friend from our group had problems with and now

> another has had similar symptoms. My two friends had Lupus though. I’ve

> posted a little about it but I’m going to post again and ask if anyone that

> has these symptoms too will reply.

>

> At least five years ago I started falling asleep during the day suddenly

> as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> When this first started I took it as needing to sleep and would just do so.

> I was married and my husband always drove so although inconvenient that I

> was falling asleep in the middle of anything at times, not too big an

> issue. It happened rarely and then would go without happening for long

> periods of time. Months to even over a year without an episode. Then a over

> a year and half ago it became more often. My relationship ended and I then

> realized how much it would overtake me while driving. I started talking to

> doctors but the usual first answer is medications. Not until you say the

> word driving and falling asleep do you get real attention. For over six

> months I voluntarily didn’t/ couldn’t drive because of these episodes.

> Finally last winter one of my doctors said to me, we can’t always find the

> cause but we must treat the symptoms. So, I was put on medication for

> Narcolepsy daily and that has worked.

>

> I did reading on Narcolepsy last year and my symptoms are the same,

> brought on the with the same circumstances and now being controlled with

> medication, thankfully. Part of the reason I’m asking is that my friend

> Kathleen was an RN and always said if it were Narcolepsy the episodes would

> not come and go over the years. She passed away this year without ever

> finding out the cause of hers either.

>

> Do any of you have these symptoms? It’s not just falling asleep, it’s that

> suddenly I cannot keep my eyes open. It’s not my blood sugars, medications

> and several other tests I’ve had done for epilepsy, etc. turn out fine so

> I’m turning to you all because I have another friend now too experiencing

> some of the similar issues.

>

> If you have an thoughts, thank you.

>

>

[Guest guest]

I believe you would be considered to be nocturnal. More like a cat, lol

a

From: Kirk Bonanny

Sent: Wednesday, June 13, 2012 11:08 PM

To: Stillsdisease

Subject: Re: Falling asleep abnormally

Howdy ....I don't have trouble alike yours, but I am tired all day

and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

me at the moment. I had one Dr. think I was Narcoleptic but after all of

his " tests " and such he decided I wasn't. I never pass out while driving or

doing anything from reading a book to doing heavier work, but the moment I

lie down I can pass out in minutes, except at night!

Hope you get the answers you need soon! Kirk

> **

>

>

> Hello everyone,

>

> I’ve been dealing with symptoms for a few years now on and off. It’s

> something that a dear friend from our group had problems with and now

> another has had similar symptoms. My two friends had Lupus though. I’ve

> posted a little about it but I’m going to post again and ask if anyone that

> has these symptoms too will reply.

>

> At least five years ago I started falling asleep during the day suddenly

> as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> When this first started I took it as needing to sleep and would just do so.

> I was married and my husband always drove so although inconvenient that I

> was falling asleep in the middle of anything at times, not too big an

> issue. It happened rarely and then would go without happening for long

> periods of time. Months to even over a year without an episode. Then a over

> a year and half ago it became more often. My relationship ended and I then

> realized how much it would overtake me while driving. I started talking to

> doctors but the usual first answer is medications. Not until you say the

> word driving and falling asleep do you get real attention. For over six

> months I voluntarily didn’t/ couldn’t drive because of these episodes.

> Finally last winter one of my doctors said to me, we can’t always find the

> cause but we must treat the symptoms. So, I was put on medication for

> Narcolepsy daily and that has worked.

>

> I did reading on Narcolepsy last year and my symptoms are the same,

> brought on the with the same circumstances and now being controlled with

> medication, thankfully. Part of the reason I’m asking is that my friend

> Kathleen was an RN and always said if it were Narcolepsy the episodes would

> not come and go over the years. She passed away this year without ever

> finding out the cause of hers either.

>

> Do any of you have these symptoms? It’s not just falling asleep, it’s that

> suddenly I cannot keep my eyes open. It’s not my blood sugars, medications

> and several other tests I’ve had done for epilepsy, etc. turn out fine so

> I’m turning to you all because I have another friend now too experiencing

> some of the similar issues.

>

> If you have an thoughts, thank you.

>

>

[Guest guest]

I am diagnosed with Lupus and Fibromyalgia and have been having blackouts. I am

always sitting and just slump over, I'm told I can't really move for a little

while and my husband has to try to stand me up and take me to the bed. 90% of

the time I don't remember any of it. I spent 3 nights in the hospital last week

and CT scan and EEG and heart tests came out normal. They said it could be my

meds, but it can happen 2 to 4 hours after I take my meds. I don't think

blackouts like that are normal so I'm confused. They also tried to give me 4

times my pain meds I normally take while in the hospital and I refused it and

they got all weird. Does anyone have unexplained total blackouts, without

recalling what happened. Oh and when in the hospital I remember them wheeling me

down for my EEG but I don't remember the procedure at all, but I only remembered

this after coming home. I am always awake for that kind of stuff because it

interests me, so I think I had a blackout right when I got there. Please

anyone, if you have had this let me know what it was from. I'm scared to death.

Have a groovy day! Deb

> >

> > > Hello everyone,

> > >

> > > I’ve been dealing with symptoms for a few years now on and off. It’s

something that a dear friend from our group had problems with and now another

has had similar symptoms. My two friends had Lupus though. I’ve posted a

little about it but I’m going to post again and ask if anyone that has these

symptoms too will reply.

> > >

> > > At least five years ago I started falling asleep during the day suddenly

as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When

this first started I took it as needing to sleep and would just do so. I was

married and my husband always drove so although inconvenient that I was falling

asleep in the middle of anything at times, not too big an issue. It happened

rarely and then would go without happening for long periods of time. Months to

even over a year without an episode. Then a over a year and half ago it became

more often. My relationship ended and I then realized how much it would overtake

me while driving. I started talking to doctors but the usual first answer is

medications. Not until you say the word driving and falling asleep do you get

real attention. For over six months I voluntarily didn’t/ couldn’t drive

because of these episodes. Finally last winter one of my doctors said to me, we

can’t always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

> > >

> > > I did reading on Narcolepsy last year and my symptoms are the same,

brought on the with the same circumstances and now being controlled with

medication, thankfully. Part of the reason I’m asking is that my friend

Kathleen was an RN and always said if it were Narcolepsy the episodes would not

come and go over the years. She passed away this year without ever finding out

the cause of hers either.

> > >

> > > Do any of you have these symptoms? It’s not just falling asleep, it’s

that suddenly I cannot keep my eyes open. It’s not my blood sugars,

medications and several other tests I’ve had done for epilepsy, etc. turn out

fine so I’m turning to you all because I have another friend now too

experiencing some of the similar issues.

> > >

> > > If you have an thoughts, thank you.

> > >

> > >

[Guest guest]

I am diagnosed with Lupus and Fibromyalgia and have been having blackouts. I am

always sitting and just slump over, I'm told I can't really move for a little

while and my husband has to try to stand me up and take me to the bed. 90% of

the time I don't remember any of it. I spent 3 nights in the hospital last week

and CT scan and EEG and heart tests came out normal. They said it could be my

meds, but it can happen 2 to 4 hours after I take my meds. I don't think

blackouts like that are normal so I'm confused. They also tried to give me 4

times my pain meds I normally take while in the hospital and I refused it and

they got all weird. Does anyone have unexplained total blackouts, without

recalling what happened. Oh and when in the hospital I remember them wheeling me

down for my EEG but I don't remember the procedure at all, but I only remembered

this after coming home. I am always awake for that kind of stuff because it

interests me, so I think I had a blackout right when I got there. Please

anyone, if you have had this let me know what it was from. I'm scared to death.

Have a groovy day! Deb

> >

> > > Hello everyone,

> > >

> > > I’ve been dealing with symptoms for a few years now on and off. It’s

something that a dear friend from our group had problems with and now another

has had similar symptoms. My two friends had Lupus though. I’ve posted a

little about it but I’m going to post again and ask if anyone that has these

symptoms too will reply.

> > >

> > > At least five years ago I started falling asleep during the day suddenly

as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When

this first started I took it as needing to sleep and would just do so. I was

married and my husband always drove so although inconvenient that I was falling

asleep in the middle of anything at times, not too big an issue. It happened

rarely and then would go without happening for long periods of time. Months to

even over a year without an episode. Then a over a year and half ago it became

more often. My relationship ended and I then realized how much it would overtake

me while driving. I started talking to doctors but the usual first answer is

medications. Not until you say the word driving and falling asleep do you get

real attention. For over six months I voluntarily didn’t/ couldn’t drive

because of these episodes. Finally last winter one of my doctors said to me, we

can’t always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

> > >

> > > I did reading on Narcolepsy last year and my symptoms are the same,

brought on the with the same circumstances and now being controlled with

medication, thankfully. Part of the reason I’m asking is that my friend

Kathleen was an RN and always said if it were Narcolepsy the episodes would not

come and go over the years. She passed away this year without ever finding out

the cause of hers either.

> > >

> > > Do any of you have these symptoms? It’s not just falling asleep, it’s

that suddenly I cannot keep my eyes open. It’s not my blood sugars,

medications and several other tests I’ve had done for epilepsy, etc. turn out

fine so I’m turning to you all because I have another friend now too

experiencing some of the similar issues.

> > >

> > > If you have an thoughts, thank you.

> > >

> > >

[Guest guest]

I am diagnosed with Lupus and Fibromyalgia and have been having blackouts. I am

always sitting and just slump over, I'm told I can't really move for a little

while and my husband has to try to stand me up and take me to the bed. 90% of

the time I don't remember any of it. I spent 3 nights in the hospital last week

and CT scan and EEG and heart tests came out normal. They said it could be my

meds, but it can happen 2 to 4 hours after I take my meds. I don't think

blackouts like that are normal so I'm confused. They also tried to give me 4

times my pain meds I normally take while in the hospital and I refused it and

they got all weird. Does anyone have unexplained total blackouts, without

recalling what happened. Oh and when in the hospital I remember them wheeling me

down for my EEG but I don't remember the procedure at all, but I only remembered

this after coming home. I am always awake for that kind of stuff because it

interests me, so I think I had a blackout right when I got there. Please

anyone, if you have had this let me know what it was from. I'm scared to death.

Have a groovy day! Deb

> >

> > > Hello everyone,

> > >

> > > I’ve been dealing with symptoms for a few years now on and off. It’s

something that a dear friend from our group had problems with and now another

has had similar symptoms. My two friends had Lupus though. I’ve posted a

little about it but I’m going to post again and ask if anyone that has these

symptoms too will reply.

> > >

> > > At least five years ago I started falling asleep during the day suddenly

as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When

this first started I took it as needing to sleep and would just do so. I was

married and my husband always drove so although inconvenient that I was falling

asleep in the middle of anything at times, not too big an issue. It happened

rarely and then would go without happening for long periods of time. Months to

even over a year without an episode. Then a over a year and half ago it became

more often. My relationship ended and I then realized how much it would overtake

me while driving. I started talking to doctors but the usual first answer is

medications. Not until you say the word driving and falling asleep do you get

real attention. For over six months I voluntarily didn’t/ couldn’t drive

because of these episodes. Finally last winter one of my doctors said to me, we

can’t always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

> > >

> > > I did reading on Narcolepsy last year and my symptoms are the same,

brought on the with the same circumstances and now being controlled with

medication, thankfully. Part of the reason I’m asking is that my friend

Kathleen was an RN and always said if it were Narcolepsy the episodes would not

come and go over the years. She passed away this year without ever finding out

the cause of hers either.

> > >

> > > Do any of you have these symptoms? It’s not just falling asleep, it’s

that suddenly I cannot keep my eyes open. It’s not my blood sugars,

medications and several other tests I’ve had done for epilepsy, etc. turn out

fine so I’m turning to you all because I have another friend now too

experiencing some of the similar issues.

> > >

> > > If you have an thoughts, thank you.

> > >

> > >

[Guest guest]

Maybe,I never looked at it that way...but I don't think my Dog

(Brownie...Lab & Mastiff...muscle bound nut!) will like that too much! The

reality of the situation that drives me totally crazy is that no Dr.

can give me an explanation as to why this happened 32yrs & 10 months into

my life! Prior to getting Stills I was never a night owl! I always had to

get my sleep, but I would do it on the weekends as I would work 14 to 22

hour days, 5 days a week if the Money was good enough! I would want to

sleep of course, but would force myself to get through the week, but come

Saturday I would sleep most of the day! I was never an easy person to wake

up..can't recall how many times my Drill SGT would toss my bed, with me in

it as I wasn't up on time. Once I never woke up after that and was asleep

on the floor with a few of my " buddies " doing everything and anything

possible to get me up......ice cold water poured on me finally did the

trick!

Later, Kirk.

> **

>

>

> I believe you would be considered to be nocturnal. More like a cat, lol

>

> a

>

> From: Kirk Bonanny

> Sent: Wednesday, June 13, 2012 11:08 PM

> To: Stillsdisease

> Subject: Re: Falling asleep abnormally

>

> Howdy ....I don't have trouble alike yours, but I am tired all day

> and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

> and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

> me at the moment. I had one Dr. think I was Narcoleptic but after all of

> his " tests " and such he decided I wasn't. I never pass out while driving or

> doing anything from reading a book to doing heavier work, but the moment I

> lie down I can pass out in minutes, except at night!

> Hope you get the answers you need soon! Kirk

>

>

>

> > **

> >

> >

> > Hello everyone,

> >

> > I’ve been dealing with symptoms for a few years now on and off. It’s

> > something that a dear friend from our group had problems with and now

> > another has had similar symptoms. My two friends had Lupus though. I’ve

> > posted a little about it but I’m going to post again and ask if anyone

> that

> > has these symptoms too will reply.

> >

> > At least five years ago I started falling asleep during the day suddenly

> > as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> > When this first started I took it as needing to sleep and would just do

> so.

> > I was married and my husband always drove so although inconvenient that I

> > was falling asleep in the middle of anything at times, not too big an

> > issue. It happened rarely and then would go without happening for long

> > periods of time. Months to even over a year without an episode. Then a

> over

> > a year and half ago it became more often. My relationship ended and I

> then

> > realized how much it would overtake me while driving. I started talking

> to

> > doctors but the usual first answer is medications. Not until you say the

> > word driving and falling asleep do you get real attention. For over six

> > months I voluntarily didn’t/ couldn’t drive because of these episodes.

> > Finally last winter one of my doctors said to me, we can’t always find

> the

> > cause but we must treat the symptoms. So, I was put on medication for

> > Narcolepsy daily and that has worked.

> >

> > I did reading on Narcolepsy last year and my symptoms are the same,

> > brought on the with the same circumstances and now being controlled with

> > medication, thankfully. Part of the reason I’m asking is that my friend

> > Kathleen was an RN and always said if it were Narcolepsy the episodes

> would

> > not come and go over the years. She passed away this year without ever

> > finding out the cause of hers either.

> >

> > Do any of you have these symptoms? It’s not just falling asleep, it’s

> that

> > suddenly I cannot keep my eyes open. It’s not my blood sugars,

> medications

> > and several other tests I’ve had done for epilepsy, etc. turn out fine so

> > I’m turning to you all because I have another friend now too experiencing

> > some of the similar issues.

> >

> > If you have an thoughts, thank you.

> >

> >

[Guest guest]

Maybe,I never looked at it that way...but I don't think my Dog

(Brownie...Lab & Mastiff...muscle bound nut!) will like that too much! The

reality of the situation that drives me totally crazy is that no Dr.

can give me an explanation as to why this happened 32yrs & 10 months into

my life! Prior to getting Stills I was never a night owl! I always had to

get my sleep, but I would do it on the weekends as I would work 14 to 22

hour days, 5 days a week if the Money was good enough! I would want to

sleep of course, but would force myself to get through the week, but come

Saturday I would sleep most of the day! I was never an easy person to wake

up..can't recall how many times my Drill SGT would toss my bed, with me in

it as I wasn't up on time. Once I never woke up after that and was asleep

on the floor with a few of my " buddies " doing everything and anything

possible to get me up......ice cold water poured on me finally did the

trick!

Later, Kirk.

> **

>

>

> I believe you would be considered to be nocturnal. More like a cat, lol

>

> a

>

> From: Kirk Bonanny

> Sent: Wednesday, June 13, 2012 11:08 PM

> To: Stillsdisease

> Subject: Re: Falling asleep abnormally

>

> Howdy ....I don't have trouble alike yours, but I am tired all day

> and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

> and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

> me at the moment. I had one Dr. think I was Narcoleptic but after all of

> his " tests " and such he decided I wasn't. I never pass out while driving or

> doing anything from reading a book to doing heavier work, but the moment I

> lie down I can pass out in minutes, except at night!

> Hope you get the answers you need soon! Kirk

>

>

>

> > **

> >

> >

> > Hello everyone,

> >

> > I’ve been dealing with symptoms for a few years now on and off. It’s

> > something that a dear friend from our group had problems with and now

> > another has had similar symptoms. My two friends had Lupus though. I’ve

> > posted a little about it but I’m going to post again and ask if anyone

> that

> > has these symptoms too will reply.

> >

> > At least five years ago I started falling asleep during the day suddenly

> > as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> > When this first started I took it as needing to sleep and would just do

> so.

> > I was married and my husband always drove so although inconvenient that I

> > was falling asleep in the middle of anything at times, not too big an

> > issue. It happened rarely and then would go without happening for long

> > periods of time. Months to even over a year without an episode. Then a

> over

> > a year and half ago it became more often. My relationship ended and I

> then

> > realized how much it would overtake me while driving. I started talking

> to

> > doctors but the usual first answer is medications. Not until you say the

> > word driving and falling asleep do you get real attention. For over six

> > months I voluntarily didn’t/ couldn’t drive because of these episodes.

> > Finally last winter one of my doctors said to me, we can’t always find

> the

> > cause but we must treat the symptoms. So, I was put on medication for

> > Narcolepsy daily and that has worked.

> >

> > I did reading on Narcolepsy last year and my symptoms are the same,

> > brought on the with the same circumstances and now being controlled with

> > medication, thankfully. Part of the reason I’m asking is that my friend

> > Kathleen was an RN and always said if it were Narcolepsy the episodes

> would

> > not come and go over the years. She passed away this year without ever

> > finding out the cause of hers either.

> >

> > Do any of you have these symptoms? It’s not just falling asleep, it’s

> that

> > suddenly I cannot keep my eyes open. It’s not my blood sugars,

> medications

> > and several other tests I’ve had done for epilepsy, etc. turn out fine so

> > I’m turning to you all because I have another friend now too experiencing

> > some of the similar issues.

> >

> > If you have an thoughts, thank you.

> >

> >

[Guest guest]

Maybe,I never looked at it that way...but I don't think my Dog

(Brownie...Lab & Mastiff...muscle bound nut!) will like that too much! The

reality of the situation that drives me totally crazy is that no Dr.

can give me an explanation as to why this happened 32yrs & 10 months into

my life! Prior to getting Stills I was never a night owl! I always had to

get my sleep, but I would do it on the weekends as I would work 14 to 22

hour days, 5 days a week if the Money was good enough! I would want to

sleep of course, but would force myself to get through the week, but come

Saturday I would sleep most of the day! I was never an easy person to wake

up..can't recall how many times my Drill SGT would toss my bed, with me in

it as I wasn't up on time. Once I never woke up after that and was asleep

on the floor with a few of my " buddies " doing everything and anything

possible to get me up......ice cold water poured on me finally did the

trick!

Later, Kirk.

> **

>

>

> I believe you would be considered to be nocturnal. More like a cat, lol

>

> a

>

> From: Kirk Bonanny

> Sent: Wednesday, June 13, 2012 11:08 PM

> To: Stillsdisease

> Subject: Re: Falling asleep abnormally

>

> Howdy ....I don't have trouble alike yours, but I am tired all day

> and wired all night. If life allowed for it I would sleep until 3 or 4:00PM

> and go to bed by 5-6:00 AM. There is a medical term for this but it escapes

> me at the moment. I had one Dr. think I was Narcoleptic but after all of

> his " tests " and such he decided I wasn't. I never pass out while driving or

> doing anything from reading a book to doing heavier work, but the moment I

> lie down I can pass out in minutes, except at night!

> Hope you get the answers you need soon! Kirk

>

>

>

> > **

> >

> >

> > Hello everyone,

> >

> > I’ve been dealing with symptoms for a few years now on and off. It’s

> > something that a dear friend from our group had problems with and now

> > another has had similar symptoms. My two friends had Lupus though. I’ve

> > posted a little about it but I’m going to post again and ask if anyone

> that

> > has these symptoms too will reply.

> >

> > At least five years ago I started falling asleep during the day suddenly

> > as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine.

> > When this first started I took it as needing to sleep and would just do

> so.

> > I was married and my husband always drove so although inconvenient that I

> > was falling asleep in the middle of anything at times, not too big an

> > issue. It happened rarely and then would go without happening for long

> > periods of time. Months to even over a year without an episode. Then a

> over

> > a year and half ago it became more often. My relationship ended and I

> then

> > realized how much it would overtake me while driving. I started talking

> to

> > doctors but the usual first answer is medications. Not until you say the

> > word driving and falling asleep do you get real attention. For over six

> > months I voluntarily didn’t/ couldn’t drive because of these episodes.

> > Finally last winter one of my doctors said to me, we can’t always find

> the

> > cause but we must treat the symptoms. So, I was put on medication for

> > Narcolepsy daily and that has worked.

> >

> > I did reading on Narcolepsy last year and my symptoms are the same,

> > brought on the with the same circumstances and now being controlled with

> > medication, thankfully. Part of the reason I’m asking is that my friend

> > Kathleen was an RN and always said if it were Narcolepsy the episodes

> would

> > not come and go over the years. She passed away this year without ever

> > finding out the cause of hers either.

> >

> > Do any of you have these symptoms? It’s not just falling asleep, it’s

> that

> > suddenly I cannot keep my eyes open. It’s not my blood sugars,

> medications

> > and several other tests I’ve had done for epilepsy, etc. turn out fine so

> > I’m turning to you all because I have another friend now too experiencing

> > some of the similar issues.

> >

> > If you have an thoughts, thank you.

> >

> >

[Guest guest]

I am 38, I have Stills and Fibromyalgia. Last november I started passing out and

I dont remember anything about it either. I thought I had a seizure, but like

you, all my test came back normal. And now if I get real cold or use my calf

muscles much I pass out. The doctors act like its not anything to worry about

but its not them. I have a 15 year old son and I have missed a lot of school

things because of this. I was scared to drive for months. One doctor gave me

anti seizure meds, they help a little with the shaking and trembling in my

hands. I cant wear shoes with heels anymore. But mine happens most of the time

when Im standing. I am so sorry to hear you are having problem and I cant help

but maybe it will make you feel better to know your not alone. Hope things get

better.

anna

________________________________

To: Stillsdisease

Sent: Thursday, June 14, 2012 1:07 PM

Subject: Re: Falling asleep abnormally

 

I am diagnosed with Lupus and Fibromyalgia and have been having blackouts. I am

always sitting and just slump over, I'm told I can't really move for a little

while and my husband has to try to stand me up and take me to the bed. 90% of

the time I don't remember any of it. I spent 3 nights in the hospital last week

and CT scan and EEG and heart tests came out normal. They said it could be my

meds, but it can happen 2 to 4 hours after I take my meds. I don't think

blackouts like that are normal so I'm confused. They also tried to give me 4

times my pain meds I normally take while in the hospital and I refused it and

they got all weird. Does anyone have unexplained total blackouts, without

recalling what happened. Oh and when in the hospital I remember them wheeling me

down for my EEG but I don't remember the procedure at all, but I only remembered

this after coming home. I am always awake for that kind of stuff because it

interests me, so I think I

had a blackout right when I got there. Please anyone, if you have had this let

me know what it was from. I'm scared to death. Have a groovy day! Deb

> >

> > > Hello everyone,

> > >

> > > I’ve been dealing with symptoms for a few years now on and off.

It’s something that a dear friend from our group had problems with and

now another has had similar symptoms. My two friends had Lupus though.

I’ve posted a little about it but I’m going to post again and ask

if anyone that has these symptoms too will reply.

> > >

> > > At least five years ago I started falling asleep during the day suddenly

as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When

this first started I took it as needing to sleep and would just do so. I was

married and my husband always drove so although inconvenient that I was falling

asleep in the middle of anything at times, not too big an issue. It happened

rarely and then would go without happening for long periods of time. Months to

even over a year without an episode. Then a over a year and half ago it became

more often. My relationship ended and I then realized how much it would overtake

me while driving. I started talking to doctors but the usual first answer is

medications. Not until you say the word driving and falling asleep do you get

real attention. For over six months I voluntarily didn’t/ couldn’t

drive because of these episodes. Finally last winter one of my doctors said to

me, we can’t

always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

> > >

> > > I did reading on Narcolepsy last year and my symptoms are the same,

brought on the with the same circumstances and now being controlled with

medication, thankfully. Part of the reason I’m asking is that my friend

Kathleen was an RN and always said if it were Narcolepsy the episodes would not

come and go over the years. She passed away this year without ever finding out

the cause of hers either.

> > >

> > > Do any of you have these symptoms? It’s not just falling asleep,

it’s that suddenly I cannot keep my eyes open. It’s not my blood

sugars, medications and several other tests I’ve had done for epilepsy,

etc. turn out fine so I’m turning to you all because I have another

friend now too experiencing some of the similar issues.

> > >

> > > If you have an thoughts, thank you.

> > >

> > >

[Guest guest]

I am 38, I have Stills and Fibromyalgia. Last november I started passing out and

I dont remember anything about it either. I thought I had a seizure, but like

you, all my test came back normal. And now if I get real cold or use my calf

muscles much I pass out. The doctors act like its not anything to worry about

but its not them. I have a 15 year old son and I have missed a lot of school

things because of this. I was scared to drive for months. One doctor gave me

anti seizure meds, they help a little with the shaking and trembling in my

hands. I cant wear shoes with heels anymore. But mine happens most of the time

when Im standing. I am so sorry to hear you are having problem and I cant help

but maybe it will make you feel better to know your not alone. Hope things get

better.

anna

________________________________

To: Stillsdisease

Sent: Thursday, June 14, 2012 1:07 PM

Subject: Re: Falling asleep abnormally

 

I am diagnosed with Lupus and Fibromyalgia and have been having blackouts. I am

always sitting and just slump over, I'm told I can't really move for a little

while and my husband has to try to stand me up and take me to the bed. 90% of

the time I don't remember any of it. I spent 3 nights in the hospital last week

and CT scan and EEG and heart tests came out normal. They said it could be my

meds, but it can happen 2 to 4 hours after I take my meds. I don't think

blackouts like that are normal so I'm confused. They also tried to give me 4

times my pain meds I normally take while in the hospital and I refused it and

they got all weird. Does anyone have unexplained total blackouts, without

recalling what happened. Oh and when in the hospital I remember them wheeling me

down for my EEG but I don't remember the procedure at all, but I only remembered

this after coming home. I am always awake for that kind of stuff because it

interests me, so I think I

had a blackout right when I got there. Please anyone, if you have had this let

me know what it was from. I'm scared to death. Have a groovy day! Deb

> >

> > > Hello everyone,

> > >

> > > I’ve been dealing with symptoms for a few years now on and off.

It’s something that a dear friend from our group had problems with and

now another has had similar symptoms. My two friends had Lupus though.

I’ve posted a little about it but I’m going to post again and ask

if anyone that has these symptoms too will reply.

> > >

> > > At least five years ago I started falling asleep during the day suddenly

as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When

this first started I took it as needing to sleep and would just do so. I was

married and my husband always drove so although inconvenient that I was falling

asleep in the middle of anything at times, not too big an issue. It happened

rarely and then would go without happening for long periods of time. Months to

even over a year without an episode. Then a over a year and half ago it became

more often. My relationship ended and I then realized how much it would overtake

me while driving. I started talking to doctors but the usual first answer is

medications. Not until you say the word driving and falling asleep do you get

real attention. For over six months I voluntarily didn’t/ couldn’t

drive because of these episodes. Finally last winter one of my doctors said to

me, we can’t

always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

> > >

> > > I did reading on Narcolepsy last year and my symptoms are the same,

brought on the with the same circumstances and now being controlled with

medication, thankfully. Part of the reason I’m asking is that my friend

Kathleen was an RN and always said if it were Narcolepsy the episodes would not

come and go over the years. She passed away this year without ever finding out

the cause of hers either.

> > >

> > > Do any of you have these symptoms? It’s not just falling asleep,

it’s that suddenly I cannot keep my eyes open. It’s not my blood

sugars, medications and several other tests I’ve had done for epilepsy,

etc. turn out fine so I’m turning to you all because I have another

friend now too experiencing some of the similar issues.

> > >

> > > If you have an thoughts, thank you.

> > >

> > >

[Guest guest]

I am 38, I have Stills and Fibromyalgia. Last november I started passing out and

I dont remember anything about it either. I thought I had a seizure, but like

you, all my test came back normal. And now if I get real cold or use my calf

muscles much I pass out. The doctors act like its not anything to worry about

but its not them. I have a 15 year old son and I have missed a lot of school

things because of this. I was scared to drive for months. One doctor gave me

anti seizure meds, they help a little with the shaking and trembling in my

hands. I cant wear shoes with heels anymore. But mine happens most of the time

when Im standing. I am so sorry to hear you are having problem and I cant help

but maybe it will make you feel better to know your not alone. Hope things get

better.

anna

________________________________

To: Stillsdisease

Sent: Thursday, June 14, 2012 1:07 PM

Subject: Re: Falling asleep abnormally

 

I am diagnosed with Lupus and Fibromyalgia and have been having blackouts. I am

always sitting and just slump over, I'm told I can't really move for a little

while and my husband has to try to stand me up and take me to the bed. 90% of

the time I don't remember any of it. I spent 3 nights in the hospital last week

and CT scan and EEG and heart tests came out normal. They said it could be my

meds, but it can happen 2 to 4 hours after I take my meds. I don't think

blackouts like that are normal so I'm confused. They also tried to give me 4

times my pain meds I normally take while in the hospital and I refused it and

they got all weird. Does anyone have unexplained total blackouts, without

recalling what happened. Oh and when in the hospital I remember them wheeling me

down for my EEG but I don't remember the procedure at all, but I only remembered

this after coming home. I am always awake for that kind of stuff because it

interests me, so I think I

had a blackout right when I got there. Please anyone, if you have had this let

me know what it was from. I'm scared to death. Have a groovy day! Deb

> >

> > > Hello everyone,

> > >

> > > I’ve been dealing with symptoms for a few years now on and off.

It’s something that a dear friend from our group had problems with and

now another has had similar symptoms. My two friends had Lupus though.

I’ve posted a little about it but I’m going to post again and ask

if anyone that has these symptoms too will reply.

> > >

> > > At least five years ago I started falling asleep during the day suddenly

as if I had Narcolepsy. I do have sleep apnea and wear a C-pap machine. When

this first started I took it as needing to sleep and would just do so. I was

married and my husband always drove so although inconvenient that I was falling

asleep in the middle of anything at times, not too big an issue. It happened

rarely and then would go without happening for long periods of time. Months to

even over a year without an episode. Then a over a year and half ago it became

more often. My relationship ended and I then realized how much it would overtake

me while driving. I started talking to doctors but the usual first answer is

medications. Not until you say the word driving and falling asleep do you get

real attention. For over six months I voluntarily didn’t/ couldn’t

drive because of these episodes. Finally last winter one of my doctors said to

me, we can’t

always find the cause but we must treat the symptoms. So, I was put on

medication for Narcolepsy daily and that has worked.

> > >

> > > I did reading on Narcolepsy last year and my symptoms are the same,

brought on the with the same circumstances and now being controlled with

medication, thankfully. Part of the reason I’m asking is that my friend

Kathleen was an RN and always said if it were Narcolepsy the episodes would not

come and go over the years. She passed away this year without ever finding out

the cause of hers either.

> > >

> > > Do any of you have these symptoms? It’s not just falling asleep,

it’s that suddenly I cannot keep my eyes open. It’s not my blood

sugars, medications and several other tests I’ve had done for epilepsy,

etc. turn out fine so I’m turning to you all because I have another

friend now too experiencing some of the similar issues.

> > >

> > > If you have an thoughts, thank you.

> > >

> > >

[Guest guest]

Good day everyone,

Thank you for sharing your experiences. As I said, I am now getting medication

but will keep asking questions from my doctors and maybe in time there will be

more clear answers as to why these episodes happen.

Please don’t let your doctors just pass it off and or let it go because you

are afraid of not being able to drive. There are medications such as

Provigil/Nuvigil and more.

Best thoughts for all to have a better day,

From: Connolly

Subject: Re: Falling asleep abnormally

I have random episodes at work when I just can't stay awake and like you say

it's to the point that I can't even keep them open of I tried. It happens way to

often when I drive. Any answers I would appreciate also. Thanks

Nik

[Guest guest]

Good day everyone,

Thank you for sharing your experiences. As I said, I am now getting medication

but will keep asking questions from my doctors and maybe in time there will be

more clear answers as to why these episodes happen.

Please don’t let your doctors just pass it off and or let it go because you

are afraid of not being able to drive. There are medications such as

Provigil/Nuvigil and more.

Best thoughts for all to have a better day,

From: Connolly

Subject: Re: Falling asleep abnormally

I have random episodes at work when I just can't stay awake and like you say

it's to the point that I can't even keep them open of I tried. It happens way to

often when I drive. Any answers I would appreciate also. Thanks

Nik

[Guest guest]

Hey everyone, This is such a big issue isn't it, and seemingly one that the docs

and family/friends just don't get at all. " So, you are tired? " " C'mon, just get

moving; " " Oh, you aren't eating properly. " Errr.....nooooooooooooooo, this is

total BLACKOUT guys. Horrible, awful feeling when it comes over you, and so

very hard to wake up out of. I don't have much on this, only to say I totally

understand and empathise. Like I was saying earlier about the perspiration

issue, this blacking out is a big signifier to me of " danger right ahead. " I

just take to my bed and refuse to be brow beaten by anyone else over it.

Interestingly though, my rheumatologist gets this completely. In fact, his

research shouts loudly that the principal reason we Stilligans have such a hard

time at work / getting back to work is fatigue. By which he doesn't mean

" tired. " He means total wipe out. He talks about this being the last bastion

in this wretched disease - i.e. can use all the NSAIDs, DMARDs, steroids,

biologics etc to contol at least most everything else - but not the fatigue. I

don't have a link to hand but you can google him - Dr. (now Professor but

publications will likely be under Dr.) A. S. Marshall, Department of

Rheumatology, Glasgow (or possibly Paisley). For me, I know now when the black

out is coming - my head feels like it's full of cotton wool, I'm not quite " with

it, " I just feel odd. So, at that point, absolutely no way to getting in the

car and extreme caution in the kitchen etc, but most importantly - away to my

bed. Best wishes, Francesca

.

[Guest guest]

Hey everyone, This is such a big issue isn't it, and seemingly one that the docs

and family/friends just don't get at all. " So, you are tired? " " C'mon, just get

moving; " " Oh, you aren't eating properly. " Errr.....nooooooooooooooo, this is

total BLACKOUT guys. Horrible, awful feeling when it comes over you, and so

very hard to wake up out of. I don't have much on this, only to say I totally

understand and empathise. Like I was saying earlier about the perspiration

issue, this blacking out is a big signifier to me of " danger right ahead. " I

just take to my bed and refuse to be brow beaten by anyone else over it.

Interestingly though, my rheumatologist gets this completely. In fact, his

research shouts loudly that the principal reason we Stilligans have such a hard

time at work / getting back to work is fatigue. By which he doesn't mean

" tired. " He means total wipe out. He talks about this being the last bastion

in this wretched disease - i.e. can use all the NSAIDs, DMARDs, steroids,

biologics etc to contol at least most everything else - but not the fatigue. I

don't have a link to hand but you can google him - Dr. (now Professor but

publications will likely be under Dr.) A. S. Marshall, Department of

Rheumatology, Glasgow (or possibly Paisley). For me, I know now when the black

out is coming - my head feels like it's full of cotton wool, I'm not quite " with

it, " I just feel odd. So, at that point, absolutely no way to getting in the

car and extreme caution in the kitchen etc, but most importantly - away to my

bed. Best wishes, Francesca

.

[Guest guest]

Hi Francesca!

It’s so good to hear from you. Thank you for giving us your doctors

information. I 100% agree with your doctors advise about the fatigue issues with

this and other diseases and rest being one of the biggest things we can do to

help manage the symptoms. Several of my hospitalizations in the first year of

onset were primarily for the exact reason. A private room to have total rest,

peace and quiet while I got physical therapy and daily care so that I could

rest. My daughter was 2 1/2 at the time.

I would like to share again that the falling asleep issue for me and several

friends has been exactly the symptoms of Narcolepsy though. It’s suddenly not

being able to keep my eyes open during periods of time and not the black outs

I’ve had at times since I was 14. When black out’s happen to me, it’s

usually because of low blood pressure especially when standing. That has been

intermittent over the years for me as well. It all affects our lives so

drastically though and makes for such challenges to live normally.

I hope you’re doing better these days? I think of you often and am so happy to

read your back posting. You’ve always been such a supportive member of our

family.

Well wishes for your days,

From: Francesca Fair

this is total BLACKOUT guys. Horrible, awful feeling when it comes over you, and

so very hard to wake up out of.

Like I was saying earlier about the perspiration issue, this blacking out is a

big signifier to me of " danger right ahead

Interestingly though, my rheumatologist gets this completely. In fact, his

research shouts loudly that the principal reason we Stilligans have such a hard

time at work / getting back to work is fatigue. By which he doesn't mean

" tired. " He means total wipe out. He talks about this being the last bastion in

this wretched disease - i.e. can use all the NSAIDs, DMARDs, steroids, biologics

etc to contol at least most everything else - but not the fatigue. I don't have

a link to hand but you can google him - Dr. (now Professor but publications will

likely be under Dr.) A. S. Marshall, Department of Rheumatology, Glasgow

(or possibly Paisley). For me, I know now when the black out is coming - my head

feels like it's full of cotton wool, I'm not quite " with it, " I just feel odd.

So, at that point, absolutely no way to getting in the car and extreme caution

in the kitchen etc, but most importantly - away to my bed. Best wishes,

Francesca

[Guest guest]

Hi Francesca!

It’s so good to hear from you. Thank you for giving us your doctors

information. I 100% agree with your doctors advise about the fatigue issues with

this and other diseases and rest being one of the biggest things we can do to

help manage the symptoms. Several of my hospitalizations in the first year of

onset were primarily for the exact reason. A private room to have total rest,

peace and quiet while I got physical therapy and daily care so that I could

rest. My daughter was 2 1/2 at the time.

I would like to share again that the falling asleep issue for me and several

friends has been exactly the symptoms of Narcolepsy though. It’s suddenly not

being able to keep my eyes open during periods of time and not the black outs

I’ve had at times since I was 14. When black out’s happen to me, it’s

usually because of low blood pressure especially when standing. That has been

intermittent over the years for me as well. It all affects our lives so

drastically though and makes for such challenges to live normally.

I hope you’re doing better these days? I think of you often and am so happy to

read your back posting. You’ve always been such a supportive member of our

family.

Well wishes for your days,

From: Francesca Fair

this is total BLACKOUT guys. Horrible, awful feeling when it comes over you, and

so very hard to wake up out of.

Like I was saying earlier about the perspiration issue, this blacking out is a

big signifier to me of " danger right ahead

Interestingly though, my rheumatologist gets this completely. In fact, his

research shouts loudly that the principal reason we Stilligans have such a hard

time at work / getting back to work is fatigue. By which he doesn't mean

" tired. " He means total wipe out. He talks about this being the last bastion in

this wretched disease - i.e. can use all the NSAIDs, DMARDs, steroids, biologics

etc to contol at least most everything else - but not the fatigue. I don't have

a link to hand but you can google him - Dr. (now Professor but publications will

likely be under Dr.) A. S. Marshall, Department of Rheumatology, Glasgow

(or possibly Paisley). For me, I know now when the black out is coming - my head

feels like it's full of cotton wool, I'm not quite " with it, " I just feel odd.

So, at that point, absolutely no way to getting in the car and extreme caution

in the kitchen etc, but most importantly - away to my bed. Best wishes,

Francesca

[Guest guest]

Hi Everyone!

I'm just back from my first visit to the Pain Clinic.. and, for once, I

felt 'listened to'! My new doc is Dr. Ribnik, full handle-bar mustache and

all! He took the time while I was in the room to look up Still's and read

all about it!! Didn't pretend it was 'something else'. AND he agreed with

me about getting off the many, many prescription drugs and narcotics I am

currently taking. I have to take all my bottles over there with me every

time.. and I have 32 prescription meds I take every day, along with daily

kineret injections.

The psychologist I was required to meet with spent an hour and a half

telling me all about HIS childhood, and HIS pain journey, and HIS

practice.. and well, you get the picture. After 90 minutes I looked at my

watch and told him I had to leave! That's the problem of letting him know

I'm a counseling psychologist! Anyway, he's doing fine with his pain

treatment, in case you were wondering?!

I do feel, though, that this clinic will be helpful, the doc was

sympathetic and thorough in his exam, and has set a course of action, so

that's a good thing.

I woke up with 'flare impending' feelings which have been there all day, so

I'm off to bed.

Thank you for listening.

This site, and all of you have been such a blessing. thank you all for

being there!

hugs to all.

*Holly *

*

*

*Holly Dorst*

*Compassionate Help with Difficult Issues*

*1050 N 3rd St., Ste B2*

*Laramie, WY 82072*

**

*