The following Narcolepsy-Chat poll is now closed.  Here are the
final results:


POLL QUESTION: How many hours a day do you spend
asleep????

CHOICES AND RESULTS
- less, 0 votes, 0.00%
- 6-8, 4 votes, 30.77%
- 8-10, 0 votes, 0.00%
- 10-12, 3 votes, 23.08%
- 12-14, 2 votes, 15.38%
- 14-16, 4 votes, 30.77%
- 16-18, 0 votes, 0.00%
- more, 0 votes, 0.00%



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I am going to file an appeal.  I am searching for an attorney now.  I
need one that will come to me.  I do not drive and I really would
rather not have my G-ma have to drive me to Louisville.  I am a
paralegal and am thinking that the first appeal I may do myself.  I
know many Attorneys but they are in estate planing and real estate
law.  I would rather have someone that I know working on it or
someone who has had experience with the Narcolepsy.  I have to agree
that it seems appalling that I first have to teach the Attorney in
order for him to know how to file.  Maybe that is what they have to
do for most filings but seems strange.  Someone on here gave me a
name of an attorney in Pheonix.  Thank you for his name.  I am have
not yet called him until i run all options more around here.  I will
call him and see if he will come to Indiana but seems far away. 
I have an attorney that is calling back Monday that is right down the
road here.  He is a friend that went in Practice on his own that if
he will take it, I do not mind teaching him of the N he already has
some knowledge from when I worked with him in the past.
Shell

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----- Original Message -----

From: rtufts4health@...

To: Narcolepsy-Chat@yahoogroups.com

Sent: Sunday, December 21, 2003 5:00 PM

Subject: Re: [Narcolepsy-Chat] Re: Insotial

You may be referring to Inositol which is a vitamin from the B Complex of vitamins. It is usually combined with Choline, another B vitamin, to form Lecithin which you can purchase in any health food store. It is made from soy and is totally safe unless you are allergic to soy. It performs a number of functions:

Breaks down fat in the body
Calms you
Helps with sleep
Improves memory

Rick Tufts

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----- Original Message -----

From: Michelle

To: Narcolepsy-Chat@yahoogroups.com

Sent: Saturday, December 27, 2003 1:58 PM

Subject: [Narcolepsy-Chat] Re: Disability Denied

I am going to file an appeal.  I am searching for an attorney now.  I
need one that will come to me.  I do not drive and I really would
rather not have my G-ma have to drive me to Louisville.  I am a
paralegal and am thinking that the first appeal I may do myself.  I
know many Attorneys but they are in estate planing and real estate
law.  I would rather have someone that I know working on it or
someone who has had experience with the Narcolepsy.  I have to agree
that it seems appalling that I first have to teach the Attorney in
order for him to know how to file.  Maybe that is what they have to
do for most filings but seems strange.  Someone on here gave me a
name of an attorney in Pheonix.  Thank you for his name.  I am have
not yet called him until i run all options more around here.  I will
call him and see if he will come to Indiana but seems far away. 
I have an attorney that is calling back Monday that is right down the
road here.  He is a friend that went in Practice on his own that if
he will take it, I do not mind teaching him of the N he already has
some knowledge from when I worked with him in the past.
Shell

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  http://groups.yahoo.com/group/Narcolepsy-Chat/
   
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I am going to file an appeal.  I am searching for an attorney now.  I
need one that will come to me.  I do not drive and I really would
rather not have my G-ma have to drive me to Louisville.  I am a
paralegal and am thinking that the first appeal I may do myself.  I
know many Attorneys but they are in estate planing and real estate
law.  I would rather have someone that I know working on it or
someone who has had experience with the Narcolepsy.  I have to agree
that it seems appalling that I first have to teach the Attorney in
order for him to know how to file.  Maybe that is what they have to
do for most filings but seems strange.  Someone on here gave me a
name of an attorney in Pheonix.  Thank you for his name.  I am have
not yet called him until i run all options more around here.  I will
call him and see if he will come to Indiana but seems far away.
I have an attorney that is calling back Monday that is right down the
road here.  He is a friend that went in Practice on his own that if
he will take it, I do not mind teaching him of the N he already has
some knowledge from when I worked with him in the past.
Shell

Michelle,

you will always be denied the first go round get an attorney and
file for an appeal.  Dont let this get you down This is normal for
SSI.  hang in there!

--- In Narcolepsy-Chat@yahoogroups.com, "Michelle" <mirewa2002@y...>
wrote:
> I am absolutely shell shocked.  I thought by the way the
interviews
> had gone that I was going to be approved.  I have to say that I am
> down in the dumps... my sleep has been very disrupted tonight.  A
> little more than normal due to panic attacks I have been having
all
> night long.  My chest hurts right now from the stress.  I have a
> history of panic attacks, for the last two years that is.  I know
> that I can file an appeal and plan to do so.  My question is to
you
> that have been approved ...  There are three types that I can
chose
> as it looks to me... case review, informal hearing and formal
> hearing... should I just start at the case review level first?  It
> also shows the doctors that they recieved medicals from... they
only
> got them from my GP fro two years and the new sleep doctor that is
in
> the hospital that i was admitted to.  I gace them all the doctors
> that had been part of the diagnose and treatment process over the
> last 13 years... they diod not even look at that.  They just
stated
> that I need to start new treatment and return to my "normal job'.
> My 'Normal Job' even with treatment i will never be able to return
to
> b/c of the stress level and obviously it has ran its toll on me.
I
> have been on all the stimulants, ritalin, cylert, addrenall, and
> dexadrine, and many many anti-depresents, most recent was the
> provigil which did not work for me.  I am considering trying the
> Xyrem through a clinical trial in Louisville Kentucky.  Xryem
aside,
> what other treatments am i suppose to try in order that I can
return
> to my normal job.  Needless to say I am very upset.  I am a single
> individual who does not have anywhere to go but the street if i do
> not have income coming in.  My desire would be to work.  I have
too
> many attacks in a day to work.  I can not drive, I can go shopping
> byself, I have set my kitchen on fire 5-6 times b/c I have attacks
> then forget I am cooking.  I do not go up and down the stairs
unless
> I absolutely have to b/c I fall down them all the time.  I sleep
on a
> mattress on the floor of my living room b/c my room is upstairs ,
but
> I can now return to work b/c I am normal... please explain this to
> me...   Sorry I have gotrten off track... I am rambling on the
> computer, no one else to talk to in the mornings.
> Ready to give up
> Shell

Kate, I do not take it but I was taking other meds with my N meds and
they did affect the sleep.  I am not sure what it is but found out
that when docs mix or create cocktails can be very dangerous.  If you
go to rxlist.com you can look at the drug interactions for all of
your meds.  Doctors are suppose to know but they do not always know.

--- In Narcolepsy-Chat@yahoogroups.com, kateland@w... wrote:
> Does anybody take this?  am I spelling this right?  (no) lol...
I am
> on it and am wondering if taking it is affecting my sleep. I cant
sleep
> like I used to. whats the best time to take it?KW~

Does anybody take this?  am I spelling this right?  (no) lol...    I am
on it and am wondering if taking it is affecting my sleep. I cant sleep
like I used to. whats the best time to take it?KW~

Michelle, I was denied 3 times. Here is Michigan after the 3rd time you
automaticaly get a hearing in front of a judge. You get to give him/her
any letters from doctors (which I had) any data - info you have
collected including a journal you should keep about all the doctors you
have seen and why and if they could/could not help you and why... You
can also have family there. (which I did).. After you talk to the judge
and tell him/her what your disability is and why you cant work and
everything you have gone through, they will listen to your family speak.
After all that the judge granted me disability. I walked out crying w/my
family. It was a 2 1/2 year fight to win that.... Even though I get
disabilitty the sate looks at my case every 3 years to see if they can
get me off it.. I hate that!

KW~

OK, I took a deep breath and then another and then another.  I called
and talked to a friend of mine and told that I had been denied.  I
talked to her for awhile and then I had to lay down and take a nap.
I got back up 45 minutes later and saw on the computer that she had
sent -emails to me.  She sent me stuff from the Narcolepsy Network
website.  I had been on that website a number of times but looking
fro "new research" not looking for Disability info.  Well there it
was... they have info for people who are first filing for D or
appealing a descision.  I called an talk to the lady at the N Network
and she is sending me info lots of it.  She is sending me cases to
site of other people who have been approved and also sending info to
pass to the people at SS to help educate them and a list of Attorneys
that help people with Narcolepsy file their case and appeals.  They
will travel to any state for hearings and will know what to do.  I am
very pleased.  I feel for the moment that it will be OK... I just
have to figure out how to survive the next few monthes.

Michele, You will win on your appeal. Keep at it and do not let the stupid
bureaucrats give you any kind of attack. Lots of love and peace Love Nettie in
Chicago. Xyrem may be the answer It helped me a whole lot.

This is my first denial.  I would appreciate any names you could
provide me.  I need to get atty b/c I need someone to fight for me...
I can not fight.  I have already called a few of the hospitals and
one doctor office but has already worn me out mentally for now.  I
have a spliting headache and am having panic attacks every call I
make.  These people probably think I am nuts

--- In Narcolepsy-Chat@yahoogroups.com, Kathie Dees
<kitkat95632@s...> wrote:
> shell,
> 
> is this your first or second time to be rejected by ss?
> i would strongly recommend an atty. i was turned down twice and
felt the same way.
> i hired a great atty. and if you want info on him, i will send it.
> also, documentation is very important. alot of these dr. records
you must attain yourself.
> rule of thumb: everytime you see a dr. get a copy...keep your own
file.
> also, ss figures if they keep turning you away, you'll go away. you
must push forward with this...don't give up. it took me 2-1/2 yrs
before getting approved with an atty.
> when it came time for the third appeal, i hired an atty. the atty
would prefer to be involved earlier if possible, but you can still do
it.
> any questions or need more info, just ask.
> kat
>
> Michelle <mirewa2002@y...> wrote:
> I am absolutely shell shocked.  I thought by the way the interviews
> had gone that I was going to be approved.  I have to say that I am
> down in the dumps... my sleep has been very disrupted tonight.  A
> little more than normal due to panic attacks I have been having all
> night long.  My chest hurts right now from the stress.  I have a
> history of panic attacks, for the last two years that is.  I know
> that I can file an appeal and plan to do so.  My question is to you
> that have been approved ...  There are three types that I can chose
> as it looks to me... case review, informal hearing and formal
> hearing... should I just start at the case review level first?  It
> also shows the doctors that they recieved medicals from... they
only
> got them from my GP fro two years and the new sleep doctor that is
in
> the hospital that i was admitted to.  I gace them all the doctors
> that had been part of the diagnose and treatment process over the
> last 13 years... they diod not even look at that.  They just stated
> that I need to start new treatment and return to my "normal job'. 
> My 'Normal Job' even with treatment i will never be able to return
to
> b/c of the stress level and obviously it has ran its toll on me.  I
> have been on all the stimulants, ritalin, cylert, addrenall, and
> dexadrine, and many many anti-depresents, most recent was the
> provigil which did not work for me.  I am considering trying the
> Xyrem through a clinical trial in Louisville Kentucky.  Xryem
aside,
> what other treatments am i suppose to try in order that I can
return
> to my normal job.  Needless to say I am very upset.  I am a single
> individual who does not have anywhere to go but the street if i do
> not have income coming in.  My desire would be to work.  I have too
> many attacks in a day to work.  I can not drive, I can go shopping
> byself, I have set my kitchen on fire 5-6 times b/c I have attacks
> then forget I am cooking.  I do not go up and down the stairs
unless
> I absolutely have to b/c I fall down them all the time.  I sleep on
a
> mattress on the floor of my living room b/c my room is upstairs ,
but
> I can now return to work b/c I am normal... please explain this to
> me...   Sorry I have gotrten off track... I am rambling on the
> computer, no one else to talk to in the mornings.
> Ready to give up
> Shell
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
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>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/Narcolepsy-Chat/
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Service.

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This is my first denial.  I would appreciate any names you could
provide me.  I need to get atty b/c I need someone to fight for me...
I can not fight.  I have already called a few of the hospitals and
one doctor office but has already worn me out mentally for now.  I
have a spliting headache and am having panic attacks every call I
make.  These people probably think I am nuts

--- In Narcolepsy-Chat@yahoogroups.com, Kathie Dees
<kitkat95632@s...> wrote:
> shell,
>
> is this your first or second time to be rejected by ss?
> i would strongly recommend an atty. i was turned down twice and
felt the same way.
> i hired a great atty. and if you want info on him, i will send it.
> also, documentation is very important. alot of these dr. records
you must attain yourself.
> rule of thumb: everytime you see a dr. get a copy...keep your own
file.
> also, ss figures if they keep turning you away, you'll go away. you
must push forward with this...don't give up. it took me 2-1/2 yrs
before getting approved with an atty.
> when it came time for the third appeal, i hired an atty. the atty
would prefer to be involved earlier if possible, but you can still do
it.
> any questions or need more info, just ask.
> kat
>
> Michelle <mirewa2002@y...> wrote:
> I am absolutely shell shocked.  I thought by the way the interviews
> had gone that I was going to be approved.  I have to say that I am
> down in the dumps... my sleep has been very disrupted tonight.  A
> little more than normal due to panic attacks I have been having all
> night long.  My chest hurts right now from the stress.  I have a
> history of panic attacks, for the last two years that is.  I know
> that I can file an appeal and plan to do so.  My question is to you
> that have been approved ...  There are three types that I can chose
> as it looks to me... case review, informal hearing and formal
> hearing... should I just start at the case review level first?  It
> also shows the doctors that they recieved medicals from... they
only
> got them from my GP fro two years and the new sleep doctor that is
in
> the hospital that i was admitted to.  I gace them all the doctors
> that had been part of the diagnose and treatment process over the
> last 13 years... they diod not even look at that.  They just stated
> that I need to start new treatment and return to my "normal job'.
> My 'Normal Job' even with treatment i will never be able to return
to
> b/c of the stress level and obviously it has ran its toll on me.  I
> have been on all the stimulants, ritalin, cylert, addrenall, and
> dexadrine, and many many anti-depresents, most recent was the
> provigil which did not work for me.  I am considering trying the
> Xyrem through a clinical trial in Louisville Kentucky.  Xryem
aside,
> what other treatments am i suppose to try in order that I can
return
> to my normal job.  Needless to say I am very upset.  I am a single
> individual who does not have anywhere to go but the street if i do
> not have income coming in.  My desire would be to work.  I have too
> many attacks in a day to work.  I can not drive, I can go shopping
> byself, I have set my kitchen on fire 5-6 times b/c I have attacks
> then forget I am cooking.  I do not go up and down the stairs
unless
> I absolutely have to b/c I fall down them all the time.  I sleep on
a
> mattress on the floor of my living room b/c my room is upstairs ,
but
> I can now return to work b/c I am normal... please explain this to
> me...   Sorry I have gotrten off track... I am rambling on the
> computer, no one else to talk to in the mornings.
> Ready to give up
> Shell
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/Narcolepsy-Chat/
>
>    To unsubscribe from this group, send an email to:
> Narcolepsy-Chat-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.

I am absolutely shell shocked.  I thought by the way the interviews
had gone that I was going to be approved.  I have to say that I am
down in the dumps... my sleep has been very disrupted tonight.  A
little more than normal due to panic attacks I have been having all
night long.  My chest hurts right now from the stress.  I have a
history of panic attacks, for the last two years that is.  I know
that I can file an appeal and plan to do so.  My question is to you
that have been approved ...  There are three types that I can chose
as it looks to me... case review, informal hearing and formal
hearing... should I just start at the case review level first?  It
also shows the doctors that they recieved medicals from... they only
got them from my GP fro two years and the new sleep doctor that is in
the hospital that i was admitted to.  I gace them all the doctors
that had been part of the diagnose and treatment process over the
last 13 years... they diod not even look at that.  They just stated
that I need to start new treatment and return to my "normal job'. 
My 'Normal Job' even with treatment i will never be able to return to
b/c of the stress level and obviously it has ran its toll on me.  I
have been on all the stimulants, ritalin, cylert, addrenall, and
dexadrine, and many many anti-depresents, most recent was the
provigil which did not work for me.  I am considering trying the
Xyrem through a clinical trial in Louisville Kentucky.  Xryem aside,
what other treatments am i suppose to try in order that I can return
to my normal job.  Needless to say I am very upset.  I am a single
individual who does not have anywhere to go but the street if i do
not have income coming in.  My desire would be to work.  I have too
many attacks in a day to work.  I can not drive, I can go shopping
byself, I have set my kitchen on fire 5-6 times b/c I have attacks
then forget I am cooking.  I do not go up and down the stairs unless
I absolutely have to b/c I fall down them all the time.  I sleep on a
mattress on the floor of my living room b/c my room is upstairs , but
I can now return to work b/c I am normal... please explain this to
me...   Sorry I have gotrten off track... I am rambling on the
computer, no one else to talk to in the mornings.
Ready to give up
Shell

---

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  http://groups.yahoo.com/group/Narcolepsy-Chat/
   
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I am  furious also that you have been denied! Sometimes I
think disability is hoping we will die or suicide before we
can collect!!!!!! grrrrrrrrrrrrrrr. Don't let them win
Michelle - appeal appeal appeal appeal - Is it ok to cuss
on this forum? I sure want to. Stupid government - wish
they could spend 1 day in your shoes!!!!!!!!!!!! Snowing in
Illinois - Danita
  On Thu, 18 Dec 2003 11:01:46 -0000
  "Michelle" <mirewa2002@...> wrote:
>
>
>
>
> I am absolutely shell shocked.&nbsp; I thought by the way
> the interviews
> had gone that I was going to be approved.&nbsp; I have to
> say that I am
> down in the dumps... my sleep has been very disrupted
> tonight.&nbsp; A
> little more than normal due to panic attacks I have been
> having all
> night long.&nbsp; My chest hurts right now from the
> stress.&nbsp; I have a
> history of panic attacks, for the last two years that
> is.&nbsp; I know
> that I can file an appeal and plan to do so.&nbsp; My
> question is to you
> that have been approved ...&nbsp; There are three types
> that I can chose
> as it looks to me... case review, informal hearing and
> formal
> hearing... should I just start at the case review level
> first?&nbsp; It
> also shows the doctors that they recieved medicals
> from... they only
> got them from my GP fro two years and the new sleep
> doctor that is in
> the hospital that i was admitted to.&nbsp; I gace them
> all the doctors
> that had been part of the diagnose and treatment process
> over the
> last 13 years... they diod not even look at that.&nbsp;
> They just stated
> that I need to start new treatment and return to my
> &quot;normal job'.&nbsp;
> My 'Normal Job' even with treatment i will never be able
> to return to
> b/c of the stress level and obviously it has ran its toll
> on me.&nbsp; I
> have been on all the stimulants, ritalin, cylert,
> addrenall, and
> dexadrine, and many many anti-depresents, most recent was
> the
> provigil which did not work for me.&nbsp; I am
> considering trying the
> Xyrem through a clinical trial in Louisville
> Kentucky.&nbsp; Xryem aside,
> what other treatments am i suppose to try in order that I
> can return
> to my normal job.&nbsp; Needless to say I am very
> upset.&nbsp; I am a single
> individual who does not have anywhere to go but the
> street if i do
> not have income coming in.&nbsp; My desire would be to
> work.&nbsp; I have too
> many attacks in a day to work.&nbsp; I can not drive, I
> can go shopping
> byself, I have set my kitchen on fire 5-6 times b/c I
> have attacks
> then forget I am cooking.&nbsp; I do not go up and down
> the stairs unless
> I absolutely have to b/c I fall down them all the
> time.&nbsp; I sleep on a
> mattress on the floor of my living room b/c my room is
> upstairs , but
> I can now return to work b/c I am normal... please
> explain this to
> me...&nbsp;&nbsp; Sorry I have gotrten off track... I am
> rambling on the
> computer, no one else to talk to in the mornings.
> Ready to give up
> Shell
>
>
>
>
>
>
>
>
>
>
> Yahoo! Groups Sponsor
>
>
>   ADVERTISEMENT
>
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
> To visit your group on the web, go
> to:http://groups.yahoo.com/group/Narcolepsy-Chat/&nbsp;
> To unsubscribe from this group, send an email
> to:Narcolepsy-Chat-unsubscribe@yahoogroups.com&nbsp;
> Your use of Yahoo! Groups is subject to the Yahoo! Terms
> of Service.
>
>
>
>
>
>

I am absolutely shell shocked.  I thought by the way the interviews
had gone that I was going to be approved.  I have to say that I am
down in the dumps... my sleep has been very disrupted tonight.  A
little more than normal due to panic attacks I have been having all
night long.  My chest hurts right now from the stress.  I have a
history of panic attacks, for the last two years that is.  I know
that I can file an appeal and plan to do so.  My question is to you
that have been approved ...  There are three types that I can chose
as it looks to me... case review, informal hearing and formal
hearing... should I just start at the case review level first?  It
also shows the doctors that they recieved medicals from... they only
got them from my GP fro two years and the new sleep doctor that is in
the hospital that i was admitted to.  I gace them all the doctors
that had been part of the diagnose and treatment process over the
last 13 years... they diod not even look at that.  They just stated
that I need to start new treatment and return to my "normal job'.
My 'Normal Job' even with treatment i will never be able to return to
b/c of the stress level and obviously it has ran its toll on me.  I
have been on all the stimulants, ritalin, cylert, addrenall, and
dexadrine, and many many anti-depresents, most recent was the
provigil which did not work for me.  I am considering trying the
Xyrem through a clinical trial in Louisville Kentucky.  Xryem aside,
what other treatments am i suppose to try in order that I can return
to my normal job.  Needless to say I am very upset.  I am a single
individual who does not have anywhere to go but the street if i do
not have income coming in.  My desire would be to work.  I have too
many attacks in a day to work.  I can not drive, I can go shopping
byself, I have set my kitchen on fire 5-6 times b/c I have attacks
then forget I am cooking.  I do not go up and down the stairs unless
I absolutely have to b/c I fall down them all the time.  I sleep on a
mattress on the floor of my living room b/c my room is upstairs , but
I can now return to work b/c I am normal... please explain this to
me...   Sorry I have gotrten off track... I am rambling on the
computer, no one else to talk to in the mornings.
Ready to give up
Shell

--- In Narcolepsy-Chat@yahoogroups.com, "woo_conley"
Pam,
I have IH and started with provigil in April 1999.  I took 2oomg to
start by Jan 2001 I was taking 500mg.  I had to stop because it was
not helping at all.  In the beginning I was able to work like
normal - this was 60-65 hours a week and still maintain my home.
Since 2001 I was on state disability and now I am on SSDI.  My nero
said I will never drive again.  After the holidays we are stopping
the dexedrine and then mo meds for two weeks and are going to try
the provigil again.  Here's hoping you have good results, even if it
is for a short time.
Lorraine

<woo_conley@H...> wrote:
> Hi again!
>
> I had my appointment with the sleep doc after the PSG yesterday.
He
> told me that I have no sleep apnea and severe PLM. He had me start
> Permax (pergolide) for PLM last week but it didn't work and I had
> weird side effects so he took me off of it. This is the same
> diagnosis I got 3 years ago except things are much worse now
> (jerking all day, etc). He also noted that there was "other stuff"
> going on and thought I should see a neurologist. YES!
>
> It was cool that when they called to get me an appointment,
someone
> had just cancelled. I got in this morning – much sooner than
> expected.
>
> The neurologist listened – he took all my information and said
that
> in addition to the PLM, it sounded like I had N. He gave me 2 wks
> sample of Provigil for the N and told me to take 2 doses per
evening
> (1 at 5 pm and 1 at bed) of clonazepam for the PLM. He also told
me
> to wean myself off Prozac (which someone along the way had
> prescribed as a migraine preventative) since it could make things
> worse.
>
> I'm scheduled for an EEG on Jan 5 (to rule out any seizure
activity)
> and am supposed to be contacted about getting an MLST (or is that
> MSLT?) after the first of the year. He did tell me that for that
> test I have to stop taking the Provigil a couple of days ahead of
> time.
>
> FINALLY seem to be getting somewhere.
>
> Now – I'm going to look at the boards and see what people have
> written about Provigil and its effectiveness.
>
> Questions (if anyone has time):
>
> If anyone has been on Provigil:
> How many days should it be before I see any effect?
> Anybody with confirmed N have Provigil NOT work?
> Any side effects that I should be on the lookout for?
> Do people build tolerance to Provigil after a while like with some
> other drugs? If so, how long does it appear to work and what do
docs
> do when that happens – up the does?
>
> If anybody has both N and PLM:
>  How did you sort out how to tell you EDS from each apart?
>  What, if anything, worked for your PLM?
> How common is having both?
>
> Thanks again for any help. I love this board! Finally getting
> answers!
> Pam

Yes I know that things could be worse... I have been through so many
bad dating experiences in the past that I always have a guard up.  I
had been feeling more normal for the first two years we were
together.  Over the last year I have been distancing myself from him
as a safe mechanism... I could not have "handled" him dumping me over
the N.  I lost the support that I had from several friends when my
mother died b/c they did not know what to say and then when N got
worse I lost job and dad can not handle any stress.  I saw everyone I
loved "leaving me" So I pushed him.  To my delight, I found out the
last few days that I was WAY wrong with Brian.  He is coming over
tom. morning to take me to his church with him.  Apparently I did not
embarrass him at all. :)  I have to say that for the last two days I
am feeling like life is going to go on.  I have been down for awhile
b/c I am not able to work and I live alone and money is running out.
Hopefully I hear from Disability soon.  I have maintained everything
so far.  I have not worked since April.
Shell

Michelle, if your boyfriend really loves you he will understand.  If
you think about it, it really isn't as bad as other disorders for
dating, like being in a wheelchair or having down's syndrome, or
terrets syndrome.  My current boyfriend has IH so he is very
supportive, its hard for him too, but not as hard as it is for me.
My boyfriends in the past have always told me I'm cute when I sleep,
I've found most guys to be really nice about it.  I suupose what I
really need is a sugar daddy so I can sleep in a big silk bed and not
have to work! j/k.   Jen.

I also have weird conversations when I am in a dream state.  I am not
married and I do not have to worry about dancing in bed. :)  However,
I did go out last night on my "first date" in monthes.  I have been
seeing my boyfriend for three years.  He knows, of course, all about
the N.  This was however his first experience with me on no meds.  I
have steered clear of him b/c I did not want to embarrass him or
myself.  Anyway, yesterday we spent the whole day together, I took a
nap at his house when I felt I could no longer fight it.  Then last
night we went to a christmas play.  My biggest fear... Embarrassing
him and myself, came to pass.  It was actually kinda funny... but
they turned off the light totally and the "play" was not a play at
all.  One person talked and everyonce in awhile a choir sang.  Well
it did not take long for me fall asleep.  Aparently I was talking in
my sleep, then when he "woke me up" I did not fullyt awaken and was
dreaming on top of the wakefullness... We had to leave.  I don't
remember it, but he was OK... He said he was bored and was glad that
he could blame me for us leaving.  Guess it worked out after all.
Course it did not scare him away like I feared it would.  When he
realized how bad it actually was.  I have not even talked to him but
a few times since I went off meds b/c I was afraid he would leave
me.  It was easier for me to push him away...  Guess he is a great
guy after all. :)

--- In Narcolepsy-Chat@yahoogroups.com, kateland@w... wrote:
> Jen,
>
> You hit it right on the note.. Mornings are another world. Me to
until I
> hit the (HOT) shower, If I have to wake up thats how I do it.
Otherwise
> dont bother talking to me cause I may be walking around wait no more
> like stumbeling around but my brain is still in dream-land.
Sometimes I
> walk around but talk from my dreams. My husband hates sleeping in
the
> same bed cause I talk,fight, and dance yes dance in my bed as I am
> dreaming. I move a  lot.
> I had one the other night and woke up just a moving my entire body
still
> hearing the song. I was bouncing in my bed lol
>
>
> Kristina~   Currently the worst thing for me is  lack of energy and
no
> memory at age 27...

I too was in this same situation, I only have a few classes short of
a degree is Chemistry specializing in drug research.  actually I have
six classes and their labs.  I had to drop out until I felt I could
go back.  I had to concentrate on either work or college. I could not
do both.  That was 10 years ago.  Unfortunately I probably won't go
back b/c my concentration and memory are so bad.


--- In Narcolepsy-Chat@yahoogroups.com, Sonya Riggs
<carolina_girl1969@y...> wrote:
>
>
> jingergyrl21 <jingergyrl21@y...> wrote:
> If anyone has any advice on how to get through college with this
> disorder please help.  I failed almost all of my classes this
> semester because I'm too tired to go and do some of the work. I am
> considering dropping out, at least for now. I don't know what to do
> and I'm really depressed about it.  I'm starting to feel like
nobody
> cares except for the disability rep. at school.
>
>
> Jingergirl,
>
> There are people out there that care.  I am one of them.  I can
relate to your situation, because I am in the same "boat" so to
speak.  I hate to say this, but I have to take 1 class at a time.  I
don't go to a regular college, I did at one time though.  However,
currently I am taking my college classes on-line.  It saves me travel
time, and if I feel tired, I can lay down and take a nap. It will
take me longer, but sometimes, in this life you have to do, what you
have to do......
>
> Take Care,
>
> Sonya
>
>
>
>
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----- Original Message -----

From: kateland@...

To: Narcolepsy-Chat@yahoogroups.com

Sent: Saturday, December 13, 2003 1:31 AM

Subject: Re: [Narcolepsy-Chat] on conking out

Jen,

You hit it right on the note.. Mornings are another world. Me to until I
hit the (HOT) shower, If I have to wake up thats how I do it. Otherwise
dont bother talking to me cause I may be walking around wait no more
like stumbeling around but my brain is still in dream-land. Sometimes I
walk around but talk from my dreams. My husband hates sleeping in the
same bed cause I talk,fight, and dance yes dance in my bed as I am
dreaming. I move a  lot.
I had one the other night and woke up just a moving my entire body still
hearing the song. I was bouncing in my bed lol


Kristina~   Currently the worst thing for me is  lack of energy and no
memory at age 27...






Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

If anyone has any advice on how to get through college with this
disorder please help.  I failed almost all of my classes this
semester because I'm too tired to go and do some of the work. I am
considering dropping out, at least for now. I don't know what to do
and I'm really depressed about it.  I'm starting to feel like nobody
cares except for the disability rep. at school.