Orphan Medical has just announced the start of a new Xyrem trial in the U.S.

It is open to people who: Have a diagnosis of narcolepsy. Do not have
another sleep disorder. Are 16 years of age or older, and who are
willing/able to visit the research center 5 to 7 times. Are otherwise
in good health.

The study locations have not been announced. For further information,
click on "Participate in Research" on the Narcolepsy Network home
page at  http://www.narcolepsynetwork.org.

come on out and join us this sunday!

AUGUST 17 Sunday Annual Potluck Picnic 4pm-? @ Ellen's House
Bring your family and friends. Bring a dish of your favorite food and
something to drink. We always have a fun time chatting and eating and
meeting new people so make plans to come. Similar groups throughout
Ohio will be invited.
All are welcome to join us!

Ellen Haider's House
961 Farnham Road, Columbus, OH 43220, telephone: 614-459-0945
DIRECTIONS: We live on the other side of the tracks from Riverside
Hospital. Take West North Broadway to Shattuck, which is the first
traffic light west of the hospital. Take Shattuck north until it
deadends into Thomas Lane. Turn right on Thomas Lane. Turn left on
the very next street and then left on Farnham Road which is also a
deadend street. 961 is the last house on the left hand side.
Actually, the pavement ends, and you keep going on gravel for the
last 2 houses.

You can also get directions through http://www.mapquest.com.

Southwest Cleveland Sleep Center in Middleburgh Heights, Ohio is
conducting an Orphan Medical sponsored clinical trial on the
investigational drug Xyrem in the treatment for narcolepsy.

They are having a free educational seminar on Thursday, September 4,
2003 at 5:00pm regarding the study. Food and drink will be provided.

For more information, please contact:
Alex Juguilon, M.D.
Southwest Cleveland Sleep Center
Tel: 440-239-7533
E-mail: jalex001@...

SEPTEMBER 21 Sunday Meeting 2-4pm @ Columbus Community Health Regional
Sleep Disorders Center (formerly Columbus Community Hospital)
General gathering of support and learning. Speaker and/or topic to be
announced. Refreshments will be served.

Columbus Community Health Regional Sleep Disorders Center
1430 South High Street, 3rd Floor, Columbus, OH 43207, telephone:
614-445-7800
DIRECTIONS: Columbus Community Health is located south of downtown
Columbus and German Village on South High Street near the Greenlawn
Avenue exit of I-71 South. Enter the building through the north side
Urgent Care Plus entrance and walk through to the lobby on the south
side of the building. We will be meeting in the first floor lobby.

Danielle Evans at Columbus Sleep Consultants would like enough of our
brochures for them to laminate and post in their patient rooms.  I
thought I had a few, but can't find them.  Who has them and can get
them to me or CSC ( or I can pick up)?

They have their third center opening in Newark this December, and
would like to provide the information to all their patients in all 3
centers.  She was very interested in providing this service to their
patients; as well as answering Ed and my questions.  CSC is no longer
associated with Riverside.  It is wholly owned by the Doctors there.

More later when I've had more time to "digest" your note.
My direct reply to Ellen "bounced" so I'm directing this to everyone.

Lynn Jones

JANUARY - FEBRUARY - MARCH 2004
1st QUARTER MEETING NOTICE

Central Ohio Sleep Disorders Support Group
P.O. Box 82011, Columbus, Ohio 43202
http://groups.yahoo.com/groups/centralohiosleepdisorders

Meetings are currently held from 2:00 - 4:00pm on the THIRD Sunday of the month
at various locations in the Columbus area.

Anyone at all is welcome to attend these meetings.
Family, friends, and the general public are welcome to join us.
We are an informal patient support group of people with various sleep disorders
who started meeting in 1986. We exist to help each other and anyone
interested in learning more about
sleep through educational materials, guest speakers, referrals to
community services, suggested readings, contact with national
organizations, and most importantly support among our members. Please
feel free to contact any of the people listed on this announcement if
you have questions or concerns.

JANUARY 18 Sunday Meeting 2-4pm @ The Elizabeth Blackwell Center
Dr. Uma Marar, of Columbus Sleep Consultants and a Riverside Hospital
Sleep Center physician, will present the topic, "Effects of
Medications on Sleep" followed by a questions & answers session.
Refreshments will be served thanks to Karen Hedden. Please feel free
to bring a snack to share.

The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214, Tel: 614-566-5153
DIRECTIONS: Riverside Methodist Hospital is located in northwest
Columbus at the corner of W. North Broadway and Olentangy River Road,
with exits from the north and south off State Route 315. The
Elizabeth Blackwell Center is just north of the hospital on the west
side of the road, near the Riverside Health Center and Kobacker
House. Visitor parking is free and is just to the left and also
behind the Center. We will be meeting in the assembly room which is
to your right once you enter the building.

We have not scheduled our regular Sunday meetings for February and
March but instead would like to try the following which is organized
on a world wide basis - International Sleep Disorders Meetup Days. We
hope many of you will join us as others meet across the globe to
discuss sleep disorders. We have not yet officially decided how we
will schedule meetings for the rest of the year so watch your mailbox
for our next quarterly meeting notice with all the details. Your
input is valued and welcome as we plan 2004. Contact any one of our
Steering Committee members with ideas and suggestions.

International Sleep Disorders Meetup Days
JANUARY 27, FEBRUARY 24, + MARCH 23 [4th Tuesdays] @ 8pm
Sign up for International Sleep Disorders Meetup Day which is
scheduled across the world in up to 561 towns (anywhere that at least
5 people sign up) on the 4th Tuesday of every month. Meetup with
other local people to discuss sleep disorders treatment and coping.
The local meeting location is up for a vote each month. To sign up go
to http://sleepdisorders.meetup.com. You can see who's signed up from
across the world and in your own neighborhood at
http://sleepdisorders.meetup.com/members.

New Support by Telephone from Advocates For Sleep
Advocates For Sleep is a sleep disorder patient network for those
with narcolepsy developed by Talk About Sleep and funded by Orphan
Medical. Advocates for Sleep mentors are patients who realize the
devastating nature of untreated sleep disorders and want to offer you
the benefit of their experience and support. Call to talk to another
patient about living with your sleep disorder and new treatment
options. Advocates For Sleep serves the sleep disorder community by
connecting you with others that have been there before and can
provide information and support as you begin treatment for your
disorder. Call 1-800-823-8893, Monday - Friday 9am-9pm central time
(10am-10pm eastern) or visit http://www.advocatesforsleep.com for
more information.

National Sleep Awareness Week is Monday, March 29 - Sunday, April 4, 2004
"Sleep! It's a Healthy Choice" is the theme of National Sleep
Awareness Week® 2004 (NSAW), a major public awareness campaign
sponsored by the National Sleep Foundation to promote the importance
of quality sleep to health, productivity and safety. It coincides
with the week leading up to Daylight Saving Time, when most of us
"spring forward" and lose a potential hour for sleep. For more
information on NSAW activities and how you can get involved, go to
http://www.nsaw.org or contact the National Sleep Foundation, 1522 K
Street, NW, Suite 500, Washington, D.C. 20005,
1-888-NSF-SLEEP, http:// www.sleepfoundation.org.

Sleep Question
Which animal sleeps standing up during non-REM sleep, but lies down
for REM sleep? See end of this notice for the answer. *

Join Us Online
Want to know the latest news about our group and its members? Join
our online group through YAHOO! at
http://groups.yahoo.com/groups/centralohiosleepdisorders.

Meetings Announcements Via E-mail
If you would rather receive your meeting announcements via e-mail,
just check the appropriate box on your membership form or send a
request to Laura at lje@.... Choosing to do this saves
trees and lowers our overall mailing costs. Both good things.

Thank You
A special thank you to Marjorie Malina for sending us stamps for our
mailings and to all those who have been able to contribute membership
dues.

In Your Dreams
Portions of this series appeared in The Columbus Dispatch Accent
section on January 9. The complete series of articles is available
from the Pittsburgh Post-Gazette online at
http://www.post-gazette.com/pg/03342/248635.stm.

STEERING COMMITTEE VOLUNTEERS:
… Ellen Haider is one of our founders and has narcolepsy.
614-459-0945 / e-mail: aahaider@...
… Lynn Jones has narcolepsy and sleep apnea. 614-868-1104 / e-mail:
lymjones@...
… Laura J. Evert has narcolepsy. Ask her about N[ART]. 614-784-8823 /
e-mail: lje@...
… Ed Howard is our expert on sleep apnea. 614-891-7213 / e-mail:
edhoward@...

TO BE ADDED TO OR REMOVED FROM OUR MAILING LIST, CONTACT:
Eva Allen who maintains our mailing list and has sleep apnea.
614-865-3418 / e-mail: eva@...

WEB SITES ABOUT SLEEP AND SLEEP DISORDERS:
American Sleep Disorders Association www.asda.org
National Sleep Foundation www.sleepfoundation.org
Talk About Sleep www.talkaboutsleep.com
SleepNet www.sleepnet.com
American Sleep Apnea Association www.sleepapnea.org
Narcolepsy Network www.narcolepsynetwork.org
Restless Legs Syndrome Foundation www.rls.org

* Answer to Sleep Question: Which animal sleeps standing up during
non-REM sleep, but lies down for REM sleep?
An elephant

although there is no solid medical evidence because the technology
just didn't exist back then, harriet tubman is believed to have had
narcolepsy. she is described as falling asleep midsentence, losing
varying amounts of time, and having visions. i wonder if the seizures
noted were actually cataplexy. very interesting i think... you can
read more in this book released for BLACK HISTORY MONTH.

HARRIET TUBMAN: The Road to Freedom by Catherine Clinton, published 02/2004
A new book which 'presents a full portrait of a complicated woman
with deep religious convictions, incredible courage, and a passion
for freedom. Tubman (1825 - 1913) suffered from seizures and
narcolepsy because of a head injury sustained when she tried to help
an escaping slave. Her condition might have contributed to the
constant visions she reported of fleeing harrowing circumstances and
of danger signs that she often heeded to her benefit. Clinton recalls
Tubman's vital role in the Underground Railroad; her relationship
with other prominent antislavery activists of the time, including
Frederick Douglass, William Lloyd Garrison, John Brown, and Sojourner
Truth; her espionage and other services provided to the Union during
the Civil War; and her later involvement in women's rights issues.
Also covered are Tubman's early marriage, her many rescues of
enslaved family members, the mysterious abduction of a fair-skinned
girl who may have been her own daughter, and her later marriage to a
man nearly 20 years her junior.' from Vanessa Bush, American Library
Association

[my apologies if you receive this more than once]
...
laura j. evert, columbus, ohio
founder/coordinator, N[ART] / make art. advocate sleep.
http://home.earthlink.net/~lje
steering committee volunteer, CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP
http://groups.yahoo.com/group/centralohiosleepdisorders

Please pass this information on to those it may help.
...
laura j. evert, columbus, ohio
founder/coordinator, N[ART] / make art. advocate sleep.
http://home.earthlink.net/~lje
steering committee volunteer, CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP
http://groups.yahoo.com/group/centralohiosleepdisorders
_________________________________

ADVOCATES FOR SLEEP 1-800-823-8893
A sleep disorder patient to patient network providing support for
people with narcolepsy by telephone.

HOURS OF OPERATION:
Monday - Wednesday: 9am-5pm central / 10am-6pm eastern
Thursday: 9am-9pm central / 10am-10pm eastern

Call to talk to another patient about living with your sleep disorder
and new treatment options. Advocates for Sleep serves the sleep
disorder community by connecting you with others that have been there
before and can provide information and support as you begin or
continue treatment for your disorder.

Advocates for Sleep mentors are patients with narcolepsy who realize
the devastating nature of untreated sleep disorders and want to offer
you the benefits of their experience. Talk to our team of mentors
about: * Living with narcolepsy * Medication / therapy options *
Being a student with narcolepsy * Narcolepsy and pregnancy *
Excessive daytime sleepiness * Cataplexy * Sleep paralysis *
Hypnagogic hallucinations * Automatic behavior

For more information: http://www.advocatesforsleep.com
_________________________________

Advocates for Sleep is made possible through an unrestricted
educational grant from Orphan Medical, Inc. This program was launched
in October 2003 by Talk About Sleep, Inc. as part of its SomnNet
sleep network serving the sleep disorder community. The information
provided by Advocates for Sleep is for informational purposes only
and is not intended to be a substitute for professional medical
advice, diagnosis or treatment. Always seek the advice of your
physician or other qualified health care provider with any questions
you may have regarding a medical condition. Never disregard medical
advice or delay in seeking it because of information you have
received through the Advocates for Sleep program.

Talk About Sleep, Inc.
P.O. Box 146, Chaska, MN 55318-0146 / Tel: 952-448-5511 / Fax: 952-448-6695
http://www.talkaboutsleep.com

some good articles i just discovered...

THE NARCOLEPTIC SPECTRUM, an article in the Spring 2001 issue of
Sleep Review magazine by Leon Rosenthal, M.D. When treating
narcolepsy, clinicians need to educate patients on the significance
of symptoms of EDS and remain vigilant in making medication
adjustments and detecting signs of depression.
http://www.sleepreviewmag.com/Articles.ASP?articleid=S0309F01

NARCOLEPSY, an article in the Spring 2001 issue of Sleep Review
magazine by Taj M. Jiva, M.D.
Patients with narcolepsy may have various combinations of cataplexy,
hypnagogic hallucinations, and sleep paralysis, which are phenomena
of REM, indicating an abnormal intrusion of REM sleep into
wakefulness .
http://www.sleepreviewmag.com/Articles.ASP?articleid=S0104F04

...
laura j. evert, columbus, ohio
founder/coordinator, N[ART] / make art. advocate sleep.
http://home.earthlink.net/~lje
steering committee volunteer, CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP
http://groups.yahoo.com/group/centralohiosleepdisorders

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the centralohiosleepdisorders
group.

   File        : /04 2004 flyer
   Uploaded by : dreamiestgirlever <dreamiestgirlever@...>
   Description : 04 2004 mtg flyer

You can access this file at the URL

http://groups.yahoo.com/group/centralohiosleepdisorders/files/04%202004%20flyer

To learn more about file sharing for your group, please visit

http://help.yahoo.com/help/us/groups/files

Regards,

dreamiestgirlever <dreamiestgirlever@...>

This group if for people that want to get out this summer and do
things.

<center>
<a href="http://groups.yahoo.com/group/FunThingsToDoInOhio/join">
<img src="http://us.i1.yimg.com/us.yimg.com/i/yg/img/ui/join.gif"
border=0><br>
Click to subscribe to FunThingsToDoInOhio</a>
</center>

Hi everybody--

It has struck me that we spend far too much time in our support group
meetings talking about medications and doctors and too little time
discussing coping skills.  Perhaps the biggest challenge for someone
who is tired all the time, is how to make the most of a limited
supply of energy.  It seems to me that this website could be an ideal
forum for discussing this kind of thing because it can include people
who don't have enough energy to make it to a meeting.  It could also
be helpful to sleepy people who don't have a support group in their
area.

I'll post a couple comments that will hopefully get the conversation
going.

Ellen

Sleep hygiene is important.  We need to find the best routine for us
as far as when to go to bed, when to get up, and stick with it.  For
some, this is a daunting challenge.  Do you have some techniques that
might help other people to deal with this?

Ellen

I guess we all have a tendency to judge what we "should" be able to
accomplish by seeing what the people around us are doing.  But, we
aren't them!  When I am fixing a meal, for instance, (a "real meal"),
I think how long it "should" take me to fix it, and then add a half
hour to that.  That seems to work with lots of things for me.

Another aspect of this, though, is what it does to our self-image to
be judging ourselves by what others do.  I think that most people who
have a chronic sleep problem also have a bad self-image.  I have
found myself occasionally realizing that I think I'm "bad" because I
have Narcolepsy.  Or it could be more to the point that I feel like I
am failing the people who I live and work with.
Ellen

hello everyone! please view the attached flyer for info about our
july mtg. or just read below...

CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP
Riverside Methodist Hospital will be hosting the support group at the
Elizabeth Blackwell Center on Sunday, July 25, 2004 from 2:00-4:00
p.m.  Dr. Armand Bermudez, Pulmonologist at Riverside Pulmonary
Associates and a Riverside Hospital Sleep Center Physician, will be
addressing the group for the first hour.  He will be discussing
"Sleep Disorders and Pulmonary Disease".

This meeting is free of charge, open to the public, and requires no
registration.  If you have any questions, please contact Karen at the
Riverside Methodist Hospital Sleep Center at 566-5018.

Directions to the Meeting:
Riverside Hospital is located at the corner of W. North Broadway and
Olentangy River Road, with exits from the north and south off S.R.
315.  The Elizabeth Blackwell Center, 3635 Olentangy River Road, is
just north of the hospital on the west side of the road, near
Kobacker House.  Parking is free and is to the left of the Center.
The meeting will be in Room D, which is to your left as you enter the
building.


[Non-text portions of this message have been removed]

JULY – AUGUST – SEPTEMBER 2004
3rd QUARTER MEETING NOTICE
*PLEASE POST/SHARE THIS NOTICE!!!*

Central Ohio Sleep Disorders Support Group
P.O. Box 82011, Columbus, Ohio 43202
http://groups.yahoo.com/groups/centralohiosleepdisorders

Meetings are usually held from 2:00 - 4:00pm on the THIRD Sunday of
the month at various locations in the Columbus area.

Anyone at all is welcome to attend these meetings.
Family, friends, and the general public are welcome to join us.
We are an informal patient support group of people with various sleep
disorders
who started meeting in 1986. We exist to help each other and anyone
interested in learning more about
sleep through educational materials, guest speakers, referrals to
community services, suggested readings, contact with national
organizations, and most importantly support among our members. Please
feel free
to contact any of the people listed on this announcement if you have
questions or concerns.

JOIN OUR YAHOO GROUP for the latest + greatest information of past +
present
+ to keep touch with each other in between meetings!
http://groups.yahoo.com/groups/centralohiosleepdisorders

NOTE: Our July meeting has been moved to the fourth Sunday due to a
scheduling conflict. We hope you will join us!

JULY 25 Sunday Meeting 2-4pm @ The Elizabeth Blackwell Center
Dr. Armand Bermudez, Pulmonologist at Riverside Pulmonary Associates
and a Riverside Hospital Sleep Center Physician, will be addressing
the group for the first hour.  He will be discussing "Sleep Disorders
and Pulmonary Disease". The second hour will be an open discussion.
This meeting is free of charge, open to the public, and requires no
registration. Refreshments will be served thanks to Karen Hedden.
Please feel free to help out by bringing a snack to share. If you have
any questions, please contact Karen at the Riverside Methodist
Hospital Sleep Center at 566-5018.

The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214, Tel: 614-566-5153
DIRECTIONS: Riverside Methodist Hospital is located in northwest
Columbus at the corner of W. North Broadway and Olentangy River Road,
with exits from the north and south off State Route 315. The Elizabeth
Blackwell Center is just north of the hospital on the west side of the
road, near the Riverside Health Center and Kobacker House. Visitor
parking is free and is just to the left and also behind the Center. We
will be meeting in the assembly room which is to your right once you
enter the building. We will be meeting in Room D, which is to your
left as you enter the building.  If you have any questions, please
contact Karen Hedden, medical social worker at Riverside Methodist
Hospital Sleep Diagnostic Center at 614-566-5018.

AUGUST 15 Sunday Annual Potluck Picnic 5-7pm @ Whetstone Park of Roses
Bring your family and friends. Bring a dish of your favorite food
and/or something to drink. Cups, plates, napkins, and eating utensils
will be provided. We always have a fun time chatting and eating and
meeting new people so make plans to come. All are welcome to join us!
Most of the picnic tables are located on either side of the bridge
before you get to the large parking lot. We'll be at the picnic tables
near the large parking lot by the Park of Roses shelter house. Just
look for signs that say SLEEP PICNIC and you'll find us.

Whetstone Park of Roses
3923 North High Street, Columbus, OH 43214, Tel: 614-645-3217 or call
Columbus Recreations & Parks, 614-645-3350.
DIRECTIONS: Whetstone Park is located in Clintonville off of North
High Street behind the Whetstone Branch of the Columbus Metropolitan
Library. From I-71, exit on North Broadway, proceed East to High St.,
turn North on High Street, proceed approximately 1.5 miles north to
the Whetstone Park entrance located at 3901 N. High St. Enter at this
location, follow the park entry road to the lower parking lot. All
parking is free; please use the lower lot adjacent to the shelter
house. We'll be at the picnic tables near this lower parking lot.
Just
look for signs that say SLEEP PICNIC and you'll find us. You may
even
want to take time to visit the 13-acre manicured gardens of 11,000
rose bushes of 350 varieties. Peak bloom is mid-June through
mid-September.

Meetings Announcements & News Via E-mail By Joining Us Online
<http://groups.yahoo.com/groups/centralohiosleepdisorders>
Get to know our members better and stay in touch between meetings by
joining our online YAHOO! group. Sign-up is available at
http://groups.yahoo.com/groups/centralohiosleepdisorders. If you would
rather receive your meeting notices exclusively via e-mail, let us
know. Choosing to do this saves trees and lowers our overall mailing
costs. Both good things so sign up today.

International Sleep Disorders Meetup Days
JULY 27, AUGUST 24, + SEPTEMBER 21 [4th Tuesdays] @ 8pm
Sign up for International Sleep Disorders Meetup Day which is
scheduled across the world in up to 561 towns (anywhere that at least
5 people sign up) on the 4th Tuesday of every month. Meetup with other
local people to discuss sleep disorders treatment and coping. The
local meeting location is up for a vote each month. To sign up go to
http://sleepdisorders.meetup.com. You can see who's signed up from
across the world and in your own neighborhood at
http://sleepdisorders.meetup.com/members. LOCALLY, venues up for a
vote include Mozart's Cafe on High Street as well as its second
location on Indianola Avenue. Don't have computer access at home?
Visit your local library and ask the reference staff for help.

In The News

FIRSTLINK: Helping People Connect
Our group is listed in the annual FIRSTLINK Directory, their Directory
On-line and additional publications. More than 1 million Frankln
County residents looking to get or give help can reach FIRSTLINK by
simply dialing 2-1-1. The agency connects individuals to critical
resource information, enrichment activities and volunteer
opportunities in the Columbus community. Clients who call 2-1-1 will
receive assistance from an experienced FIRSTLINK specialist, ranging
from home healthcare resources to assist an aging parent to where to
enroll a child in summercamp. For more information, contact FIRSTLINK,
195 North Grant Avenue, Columbus, OH 43215, Tel: 614-221-6766 / Fax:
614-224-6866 / Website: http://www. firstlink.org

ADVOCATES FOR SLEEP: A Patient To Patient Network
The Knowledge Base section of the AFS web site, has content about
fibromyalgia, so those of you who need a quick basic education on it,
it's there for you.  For more extensive information on fibromyalgia,
contact the National Fibromyalgia Association, 2200 N. Glassell St.,
Suite A, Orange, CA 92865; Tel: 714-921-0150 / Fax: 714-921-6920 /
E-mail: NFA@... / Website: http://www.fmaware.org. Advocates
For Sleep is a sleep disorder patient to patient network where you can
talk to another patient about living with your sleep disorder and new
treatment options. Advocates for Sleep serves the sleep disorder
community by connecting you with others that have been there before
and can provide information and support as you begin treatment for
your disorder. Talk to our team of mentors about: * Living with Sleep
Disorders * Medication / therapy options * Being a student with
Narcolepsy * Narcolepsy and pregnancy * Excessive Daytime Sleepiness *
Cataplexy * Sleep Paralysis * Hypnagogic Hallucinations * Automatic
Behavior. Advocates for Sleep mentors are patients who realize the
devastating nature of untreated sleep disorders and want to offer you
the benefits of their experience. (Our very own Laura is a patient
mentor.) Talk to mentors free of charge - 1-800-823-8893,
Monday-Wednesday 9AM-5PM and Thursday 9AM-9PM (CST).


STEERING COMMITTEE VOLUNTEERS:
∑ Ellen Haider is one of our founders and has narcolepsy.
614-459-0945
/ e-mail: aahaider@...
∑ Lynn Jones has narcolepsy and sleep apnea. 614-868-1104 /
e-mail:
lymjones@...
∑ Laura J. Evert has narcolepsy. Ask her about ART FOR SLEEP.
614-784-8823 / e-mail: lje@...
∑ Ed Howard is our expert on sleep apnea. 614-891-7213 / e-mail:
edhoward@...
∑ Fernando Caro has narcolepsy. 614-537-3371 / e-mail:
noname@...

TO BE ADDED TO OR REMOVED FROM OUR U.S. POSTAL MAILING LIST, CONTACT:
Laura Evert who maintains our mailing list database. 614-784-8823 /
e-mail: lje@...

TO BE ADDED TO OR REMOVED FROM OUR E-MAIL LIST THROUGH YAHOO! GROUPS,
CONTACT:
http://groups.yahoo.com/groups/centralohiosleepdisorders


On The Web

WEBSITES: About Sleep, Sleep Disorders, And Related Conditions
American Sleep Disorders Association www.asda.org
National Sleep Foundation www.sleepfoundation.org
Talk About Sleep www.talkaboutsleep.com
Advocates For Sleep www.advocatesforsleep.com
SleepNet www.sleepnet.com
American Sleep Apnea Association www.sleepapnea.org
Narcolepsy Network www.narcolepsynetwork.org
Restless Legs Syndrome Foundation www.rls.org
National Fibromyalgia Association www.fmaware.org

This mailing was made possible with the generous help of
Robert Clark, M.D. and the staff at
Columbus Community Health Regional Sleep Disorders Center.
Tel: 614-443-7800 / Website: www.thesleepsite.com
and YOU,
the members of the Central Ohio Sleep Disorders Support Group.
Thank you everyone!


Membership

Central Ohio Sleep Disorders Support Group Membership!
Our July quarterly mailing is the time we ask for your voluntary
membership dues of $10 or more to help pay for our post office box,
mailing supplies, and such. We do want to emphasize that no one will
be excluded because of an inability to pay. We want everyone to stay
involved and informed. This will be an honors system based collection
of dues. Membership dues will be asked for each July with a reminder
in October, so please take the time now to send your $10 annual
membership dues payable to Central Ohio Sleep Disorders Support Group
at P.O. Box 82011, Columbus, OH 43202. A membership form follows. A
special thank you to all those who have been able to contribute
voluntary membership dues of $10 or more last year. We also appreciate
the personal notes, suggestions, and ideas that you have sent in. Keep
that mail coming! We can't do it without you! All information is
optional and kept confidential.

Name/Organization:
Address:
Telephone:
E-mail:
Website:
Sleep disorder(s):
Sleep physician:
Personal notes, suggestions, and ideas:

[  ] Membership dues of $10 or $____ enclosed.
[  ] Please add me to your US postal mailing list.
[  ] Please send meeting announcements to me via e-mail.

Meetings Announcements & News Via E-mail By Joining Us Online
<http://groups.yahoo.com/groups/centralohiosleepdisorders>
Get to know our members better and stay in touch between meetings by
joining our online YAHOO! group. Sign-up is available at
http://groups.yahoo.com/groups/centralohiosleepdisorders. If you would
rather receive your meeting notices exclusively via e-mail, let us
know. Choosing to do this saves trees and lowers our overall mailing
costs. Both good things so sign up today.
_____________________________________________

THE CENTRAL OHIO SLEEP DISORDER SUPPORT GROUP is your group but only
if you make it so!
_____________________________________________

Hi Laura,

I live in the Columbus area and am trying to find a group that meets
to discuss Lucid dreams, sleep apnea, and narcalepsy. I have been
experiencing things in my sleep that made me think that I was
loosing my mind and the more I started reading up on it I realized
that others were experiencing the same things. I really feel a great
need to discuss the events that unfold in my dreams but I will be
out of town on Sunday the 25th. Are there any other meetings in the
area that you are aware of?

Any help is greatly appreciated.

-Troy




--- In centralohiosleepdisorders@yahoogroups.com, "laura jane evert"
<dreamiestgirlever@y...> wrote:
> JULY – AUGUST – SEPTEMBER 2004
> 3rd QUARTER MEETING NOTICE
> *PLEASE POST/SHARE THIS NOTICE!!!*
>
> Central Ohio Sleep Disorders Support Group
> P.O. Box 82011, Columbus, Ohio 43202
> http://groups.yahoo.com/groups/centralohiosleepdisorders
>
> Meetings are usually held from 2:00 - 4:00pm on the THIRD Sunday of
> the month at various locations in the Columbus area.
>
> Anyone at all is welcome to attend these meetings.
> Family, friends, and the general public are welcome to join us.
> We are an informal patient support group of people with various
sleep
> disorders
> who started meeting in 1986. We exist to help each other and anyone
> interested in learning more about
> sleep through educational materials, guest speakers, referrals to
> community services, suggested readings, contact with national
> organizations, and most importantly support among our members.
Please
> feel free
> to contact any of the people listed on this announcement if you
have
> questions or concerns.
>
> JOIN OUR YAHOO GROUP for the latest + greatest information of past
+
> present
> + to keep touch with each other in between meetings!
> http://groups.yahoo.com/groups/centralohiosleepdisorders
>
> NOTE: Our July meeting has been moved to the fourth Sunday due to a
> scheduling conflict. We hope you will join us!
>
> JULY 25 Sunday Meeting 2-4pm @ The Elizabeth Blackwell Center
> Dr. Armand Bermudez, Pulmonologist at Riverside Pulmonary
Associates
> and a Riverside Hospital Sleep Center Physician, will be addressing
> the group for the first hour.  He will be discussing "Sleep
Disorders
> and Pulmonary Disease". The second hour will be an open discussion.
> This meeting is free of charge, open to the public, and requires no
> registration. Refreshments will be served thanks to Karen Hedden.
> Please feel free to help out by bringing a snack to share. If you
have
> any questions, please contact Karen at the Riverside Methodist
> Hospital Sleep Center at 566-5018.
>
> The Elizabeth Blackwell Center of Riverside Methodist Hospital
> 3635 Olentangy River Road, Columbus, OH 43214, Tel: 614-566-5153
> DIRECTIONS: Riverside Methodist Hospital is located in northwest
> Columbus at the corner of W. North Broadway and Olentangy River
Road,
> with exits from the north and south off State Route 315. The
Elizabeth
> Blackwell Center is just north of the hospital on the west side of
the
> road, near the Riverside Health Center and Kobacker House. Visitor
> parking is free and is just to the left and also behind the
Center. We
> will be meeting in the assembly room which is to your right once
you
> enter the building. We will be meeting in Room D, which is to your
> left as you enter the building.  If you have any questions, please
> contact Karen Hedden, medical social worker at Riverside Methodist
> Hospital Sleep Diagnostic Center at 614-566-5018.
>
> AUGUST 15 Sunday Annual Potluck Picnic 5-7pm @ Whetstone Park of
Roses
> Bring your family and friends. Bring a dish of your favorite food
> and/or something to drink. Cups, plates, napkins, and eating
utensils
> will be provided. We always have a fun time chatting and eating and
> meeting new people so make plans to come. All are welcome to join
us!
> Most of the picnic tables are located on either side of the bridge
> before you get to the large parking lot. We'll be at the picnic
tables
> near the large parking lot by the Park of Roses shelter house. Just
> look for signs that say SLEEP PICNIC and you'll find us.
>
> Whetstone Park of Roses
> 3923 North High Street, Columbus, OH 43214, Tel: 614-645-3217 or
call
> Columbus Recreations & Parks, 614-645-3350.
> DIRECTIONS: Whetstone Park is located in Clintonville off of North
> High Street behind the Whetstone Branch of the Columbus
Metropolitan
> Library. From I-71, exit on North Broadway, proceed East to High
St.,
> turn North on High Street, proceed approximately 1.5 miles north to
> the Whetstone Park entrance located at 3901 N. High St. Enter at
this
> location, follow the park entry road to the lower parking lot. All
> parking is free; please use the lower lot adjacent to the shelter
> house. We'll be at the picnic tables near this lower parking lot.
> Just
> look for signs that say SLEEP PICNIC and you'll find us. You may
> even
> want to take time to visit the 13-acre manicured gardens of 11,000
> rose bushes of 350 varieties. Peak bloom is mid-June through
> mid-September.
>
> Meetings Announcements & News Via E-mail By Joining Us Online
> <http://groups.yahoo.com/groups/centralohiosleepdisorders>
> Get to know our members better and stay in touch between meetings
by
> joining our online YAHOO! group. Sign-up is available at
> http://groups.yahoo.com/groups/centralohiosleepdisorders. If you
would
> rather receive your meeting notices exclusively via e-mail, let us
> know. Choosing to do this saves trees and lowers our overall
mailing
> costs. Both good things so sign up today.
>
> International Sleep Disorders Meetup Days
> JULY 27, AUGUST 24, + SEPTEMBER 21 [4th Tuesdays] @ 8pm
> Sign up for International Sleep Disorders Meetup Day which is
> scheduled across the world in up to 561 towns (anywhere that at
least
> 5 people sign up) on the 4th Tuesday of every month. Meetup with
other
> local people to discuss sleep disorders treatment and coping. The
> local meeting location is up for a vote each month. To sign up go
to
> http://sleepdisorders.meetup.com. You can see who's signed up from
> across the world and in your own neighborhood at
> http://sleepdisorders.meetup.com/members. LOCALLY, venues up for a
> vote include Mozart's Cafe on High Street as well as its second
> location on Indianola Avenue. Don't have computer access at home?
> Visit your local library and ask the reference staff for help.
>
> In The News
>
> FIRSTLINK: Helping People Connect
> Our group is listed in the annual FIRSTLINK Directory, their
Directory
> On-line and additional publications. More than 1 million Frankln
> County residents looking to get or give help can reach FIRSTLINK by
> simply dialing 2-1-1. The agency connects individuals to critical
> resource information, enrichment activities and volunteer
> opportunities in the Columbus community. Clients who call 2-1-1
will
> receive assistance from an experienced FIRSTLINK specialist,
ranging
> from home healthcare resources to assist an aging parent to where
to
> enroll a child in summercamp. For more information, contact
FIRSTLINK,
> 195 North Grant Avenue, Columbus, OH 43215, Tel: 614-221-6766 /
Fax:
> 614-224-6866 / Website: http://www. firstlink.org
>
> ADVOCATES FOR SLEEP: A Patient To Patient Network
> The Knowledge Base section of the AFS web site, has content about
> fibromyalgia, so those of you who need a quick basic education on
it,
> it's there for you.  For more extensive information on
fibromyalgia,
> contact the National Fibromyalgia Association, 2200 N. Glassell
St.,
> Suite A, Orange, CA 92865; Tel: 714-921-0150 / Fax: 714-921-6920 /
> E-mail: NFA@f... / Website: http://www.fmaware.org. Advocates
> For Sleep is a sleep disorder patient to patient network where you
can
> talk to another patient about living with your sleep disorder and
new
> treatment options. Advocates for Sleep serves the sleep disorder
> community by connecting you with others that have been there before
> and can provide information and support as you begin treatment for
> your disorder. Talk to our team of mentors about: * Living with
Sleep
> Disorders * Medication / therapy options * Being a student with
> Narcolepsy * Narcolepsy and pregnancy * Excessive Daytime
Sleepiness *
> Cataplexy * Sleep Paralysis * Hypnagogic Hallucinations * Automatic
> Behavior. Advocates for Sleep mentors are patients who realize the
> devastating nature of untreated sleep disorders and want to offer
you
> the benefits of their experience. (Our very own Laura is a patient
> mentor.) Talk to mentors free of charge - 1-800-823-8893,
> Monday-Wednesday 9AM-5PM and Thursday 9AM-9PM (CST).
>
>
> STEERING COMMITTEE VOLUNTEERS:
> ∑ Ellen Haider is one of our founders and has narcolepsy.
> 614-459-0945
> / e-mail: aahaider@w...
> ∑ Lynn Jones has narcolepsy and sleep apnea. 614-868-1104 /
> e-mail:
> lymjones@b...
> ∑ Laura J. Evert has narcolepsy. Ask her about ART FOR SLEEP.
> 614-784-8823 / e-mail: lje@e...
> ∑ Ed Howard is our expert on sleep apnea. 614-891-7213 / e-
mail:
> edhoward@j...
> ∑ Fernando Caro has narcolepsy. 614-537-3371 / e-mail:
> noname@a...
>
> TO BE ADDED TO OR REMOVED FROM OUR U.S. POSTAL MAILING LIST,
CONTACT:
> Laura Evert who maintains our mailing list database. 614-784-8823 /
> e-mail: lje@e...
>
> TO BE ADDED TO OR REMOVED FROM OUR E-MAIL LIST THROUGH YAHOO!
GROUPS,
> CONTACT:
> http://groups.yahoo.com/groups/centralohiosleepdisorders
>
>
> On The Web
>
> WEBSITES: About Sleep, Sleep Disorders, And Related Conditions
> American Sleep Disorders Association www.asda.org
> National Sleep Foundation www.sleepfoundation.org
> Talk About Sleep www.talkaboutsleep.com
> Advocates For Sleep www.advocatesforsleep.com
> SleepNet www.sleepnet.com
> American Sleep Apnea Association www.sleepapnea.org
> Narcolepsy Network www.narcolepsynetwork.org
> Restless Legs Syndrome Foundation www.rls.org
> National Fibromyalgia Association www.fmaware.org
>
> This mailing was made possible with the generous help of
> Robert Clark, M.D. and the staff at
> Columbus Community Health Regional Sleep Disorders Center.
> Tel: 614-443-7800 / Website: www.thesleepsite.com
> and YOU,
> the members of the Central Ohio Sleep Disorders Support Group.
> Thank you everyone!
>
>
> Membership
>
> Central Ohio Sleep Disorders Support Group Membership!
> Our July quarterly mailing is the time we ask for your voluntary
> membership dues of $10 or more to help pay for our post office box,
> mailing supplies, and such. We do want to emphasize that no one
will
> be excluded because of an inability to pay. We want everyone to
stay
> involved and informed. This will be an honors system based
collection
> of dues. Membership dues will be asked for each July with a
reminder
> in October, so please take the time now to send your $10 annual
> membership dues payable to Central Ohio Sleep Disorders Support
Group
> at P.O. Box 82011, Columbus, OH 43202. A membership form follows. A
> special thank you to all those who have been able to contribute
> voluntary membership dues of $10 or more last year. We also
appreciate
> the personal notes, suggestions, and ideas that you have sent in.
Keep
> that mail coming! We can't do it without you! All information is
> optional and kept confidential.
>
> Name/Organization:
> Address:
> Telephone:
> E-mail:
> Website:
> Sleep disorder(s):
> Sleep physician:
> Personal notes, suggestions, and ideas:
>
> [  ] Membership dues of $10 or $____ enclosed.
> [  ] Please add me to your US postal mailing list.
> [  ] Please send meeting announcements to me via e-mail.
>
> Meetings Announcements & News Via E-mail By Joining Us Online
> <http://groups.yahoo.com/groups/centralohiosleepdisorders>
> Get to know our members better and stay in touch between meetings
by
> joining our online YAHOO! group. Sign-up is available at
> http://groups.yahoo.com/groups/centralohiosleepdisorders. If you
would
> rather receive your meeting notices exclusively via e-mail, let us
> know. Choosing to do this saves trees and lowers our overall
mailing
> costs. Both good things so sign up today.
> _____________________________________________
>
> THE CENTRAL OHIO SLEEP DISORDER SUPPORT GROUP is your group but
only
> if you make it so!
> _____________________________________________

I have had degenerative spinal disease for over 20 years and have had
trouble sleeping and having nightmares.  A couple of years ago I
found a site to purchase a chinese remedy called Leskin Good Sleeping
pills.  These are the first pills I have taken that have given me a
good nights sleep.  They are very inexpensive.  Just $6.95 for
thirty.  They are very small and I only needed to take one most of
the time.  Sometimes two.  I was hoping someone might know of a
vendor selling theses sleeping pills or a web site that I can obtain
them. His old address is no longer working.  Thanks for any help.  I
hope you all have a great week.

Art!

Hi all,

I've been a sort of silent member for awhile.  Grad school, a new
city and relationship, and learning about my narcolepsy pretty much
took up all my energy.  I went to a sleep meeting with Laura a few
months ago and it was wonderful.  All of you who were there really
made me understand that I was not crazy, that what I had been
feeling was real, and reminded me that it is good to have a sense of
humor sometimes.

I've been working on my MFA (Master of Fine Arts) in Creative
Writing and this final year is my thesis year.  I write about many
things, but lately writing about narcolepsy, informing people, and
using narc in some creative capacity has gone to the forefront of my
work.  I have tons of medical resources, and my own experiences, but
I am looking to collect stories from other narcoleptics.  Everything
would be done professionally.  I wouldn't release your name if you
did not want it to be known, I'll be recording our chats and taking
notes, and basically presenting your story as is - no changing
around what you tell me.

What I am hoping to do is have a collection of narratives interwoven
with the history of narcolepsy and the medical side of things.  This
is something that I've been working on for some time, and what my
manuscript lacks are the voices of other narcoleptics (or anyone who
has hypnogogic hallucinations, lucid dreaming, eds).  There are
currently no books out there that represent our community, and when
I was searching for the personal side of narcolepsy, this frustrated
me.  I wanted to know how people were living with this disorder, how
they managed, found healthcare, raised families, etc.  I knew how
the disorder worked and I knew what meds to take, but sometimes you
just need other people.

Which is why I'm mailing out to the support group and asking for
volunteers.  If you are interested in being a part of this project
or would like more information, please email me at
k1torres@... (there is a #1 next to the k, not the letter l).
Or call my home at 614-263-4175.

I have limited transportation (Columbus area) so would prefer to
meet somewhere in this area, but if you want to talk over the phone,
I'll gladly pick up the phone bill and call you. And I can arrange
to meet up in the nearby Columbus suburbs.

If you need credentials or anything like that, just let me know. As
of now, I have one published piece about narcolepsy, but it is not
coming out until January 2005.  Thanks for the time.

best,
Kristina Torres

Hi Everybody--

I want to remind you that our annual potluck picnic is coming up
soon.  I hope you will be able to come.  We are going to have it at
Whetstone Park this year on Sunday August 15 from 5:00-7:00.  Laura
has good directions and details in her 3rd quarter meeting notice
posted on July 14.

This is an excellant chance to share information and concerns
informally.  And the more people that come the more there is to share!

As a bonus, there is going to be a concert in the Park of Roses
gazebo at 7:00.  It will be the Reynoldsburg Community Band.  (More
incentive for East siders to come.)

Hope to see you there.

Ellen

hello:
   I was wondering if there are any support groups in the cleveland
area?  I was diagnosed in 2003 with nacolepsy and it's really
starting to get to me.  I am taking provigl,500mg a day, but I still
have sleep attacks. The cataplexy is getting bad I'm afraid to laugh,
cry, for fear of falling down which has happened but not in public. I
tried taking ritalin(sp) but that just turned me into super bitch,
how do those kids take that stuff? Thursday I was written up at my
job for having an attitude problem. My boss suggested therapy (that
hurt) I think the provigl is causing me to become a b**h too.  Any
info you can give me would really help. I am pretty much alone, even
tho I do have a significant other and my kids, no one really
understands what is going on.  And as far as a freinds...well lets
just say who? I try to make light of the problem ("I'm a
dyslexic,narcoleptic, metapausel women!!) But I really don't know
where to turn,
Any ifo you can give me would be greatly appreciated.
sarah

Sarah,

I was diagnosed 2 years ago and have been on provigil
ever since.  I was on 600 mg but I am now down to 400,
some days even 200.  I found out a lot about myself
and it really took a while to determine how to take
provigil and make it work for me.

One this for sure, sugar is a killer for me.  I know
in an office setting there is lots of sugar and all it
takes is one peice of chocolate or a star mint and I
am ready to pass out.  I also know that taking my
provigil to late in the day or to early in the day
really makes my day bad.  I have found that if I take
200 mg when I wake up and then 200 more later in the
day, depending on how I feel, sometime noon, sometimes
2PM works best for me.  I think everyone has to work
out a schedule for how their body reacts and what
thier life style is like.

Pay close attention to your reactions to foods,
situations etc, knowing how you react will help you a
lot.  I do not have cataplexy, so I can not help with
that, but I will be praying for you!

God Bless you and your family.

Grace and Peace
Jeff
--- ramoth41@... wrote:

> hello:
>   I was wondering if there are any support groups in
> the cleveland
> area?  I was diagnosed in 2003 with nacolepsy and
> it's really
> starting to get to me.  I am taking provigl,500mg a
> day, but I still
> have sleep attacks. The cataplexy is getting bad I'm
> afraid to laugh,
> cry, for fear of falling down which has happened but
> not in public. I
> tried taking ritalin(sp) but that just turned me
> into super bitch,
> how do those kids take that stuff? Thursday I was
> written up at my
> job for having an attitude problem. My boss
> suggested therapy (that
> hurt) I think the provigl is causing me to become a
> b**h too.  Any
> info you can give me would really help. I am pretty
> much alone, even
> tho I do have a significant other and my kids, no
> one really
> understands what is going on.  And as far as a
> freinds...well lets
> just say who? I try to make light of the problem
> ("I'm a
> dyslexic,narcoleptic, metapausel women!!) But I
> really don't know
> where to turn,
> Any ifo you can give me would be greatly
> appreciated.
> sarah
>
>




_______________________________
Do you Yahoo!?
Win 1 of 4,000 free domain names from Yahoo! Enter now.
http://promotions.yahoo.com/goldrush

Greeting, All~
My name is Paula.  I live in Urbana, which is about 45 minutes to an
hour west of Dublin.  It seems I've had narcolepsy and insomnia for
several years, and fibromyalgia for many more, but I've only
recently been correctly diagnosed with each.  I will soon begin
Xyrem therapy and received all the written information today via
Federal Express, which the company makes you read before they send
the actual medication.  I've not heard or read anyone's experience
with the drug and wanted to ask here...my first contact with a
support group.  I'd also like to know if any of you have
fibromyalgia and myofascial pain, as quite a few people with these
syndromes also have narcolepsy and/or insomnia (non-restorative
sleep disorders).
I'll leave my first post at that, as I have over ten years of horror
stories leading up to being correctly diagnosed.  But I am very
eager to share and get to know all of you.  I'm so excited to know
that I'm not an alien after all ;)

Jeff:
> Thanks for getting back to me.  You know I never thought about food
causing a sleep atack!! Actually today was better than the last few I
didn't really do anything different other than I didn't drink any
coffee other than the 2 cups I had at home this morning!!  I know I
had a couple of episodes ( I can taste it after !! ) tho but nothing
like having to go in the ladies room and crash! Makes me wonder! I
take 200mg of provigil in the morning 1/2 a tab around noon and 200mg
about 2pm. I have tried taking it at different times but not the
dose.  Tho there have been days when I forgot to take a dose and I
can tell!! Weekends it's hard to remember!!
I'll keep in mind what you said about food.. can't give up the
chocolate tho!! I have noticed when I'm doing some of the paper work
I do everyday it seems have an effect. Prolly cause its an everyday
automatic thing.
Thanks for listening ! hope to hear from you again!! I already feel
better!:)
Sarah
>
> _______________________________
> Do you Yahoo!?
> Win 1 of 4,000 free domain names from Yahoo! Enter now.
> http://promotions.yahoo.com/goldrush

Sarah,

Glad I could be of some assistance.  I know what you
mean about chocolate, but let me tell you, once you
realize what it may be doing to you, it helps in the
reduction of intake.....

This has been very hard for me to deal with, I have
never had any long term problems until now and I hate
taking medicine.  My condition is mild, but provigil,
while it has helped a lot for my sleepiness and being
tired all of the time, has taken me to a different
level because of different types of food.  Coffee is
another that causes issues.  I use to be able to drink
a pot a day and now If I have a cup, I have to really
watch what I am doing.  I have taken many 5 minute
refresher's in the bathroom at work.  While at home on
the weekends, when I forget my pill, I am usually ok
until about 7PM and then I am ready to crash, and
usually take a short nap and I am ok.

It will get better, it just takes time.

God Bless
Jeff
--- ramoth41@... wrote:

> Jeff:
> > Thanks for getting back to me.  You know I never
> thought about food
> causing a sleep atack!! Actually today was better
> than the last few I
> didn't really do anything different other than I
> didn't drink any
> coffee other than the 2 cups I had at home this
> morning!!  I know I
> had a couple of episodes ( I can taste it after !! )
> tho but nothing
> like having to go in the ladies room and crash!
> Makes me wonder! I
> take 200mg of provigil in the morning 1/2 a tab
> around noon and 200mg
> about 2pm. I have tried taking it at different times
> but not the
> dose.  Tho there have been days when I forgot to
> take a dose and I
> can tell!! Weekends it's hard to remember!!
> I'll keep in mind what you said about food.. can't
> give up the
> chocolate tho!! I have noticed when I'm doing some
> of the paper work
> I do everyday it seems have an effect. Prolly cause
> its an everyday
> automatic thing.
> Thanks for listening ! hope to hear from you again!!
> I already feel
> better!:)
> Sarah
> >
> > _______________________________
> > Do you Yahoo!?
> > Win 1 of 4,000 free domain names from Yahoo! Enter
> now.
> > http://promotions.yahoo.com/goldrush
>
>




_______________________________
Do you Yahoo!?
Win 1 of 4,000 free domain names from Yahoo! Enter now.
http://promotions.yahoo.com/goldrush

I was just wondering what side effects some of us have had while
taking provigil.  I was on another site and most every one talked
about short term memory loss. I really didn't think I had that
untill I started reading some of the posts. I guess being dyslexic
and narcoleptic I really didn't think anything was THAT diferent!!
lol!
Anyway I was wondering if anyone had a problem general additude
changes.  I know it can make you more aggressive but when is that a
side effect and not just the stress of trying to get by day to day.
I know I'm not the easiest person to live with on a good day but
lately I have had a TON of stress.  I know stress is one of those
thing that can cause a whole host of problems and am now working on
reducing the stress, most of which I am prolly putting on my self!
So what other things can I expect?????
Thank you!
Sarah

Hey everyone,
I just signed up with this support group.  Just wondering if any of
you are having problems with gaining weight after your dianosis?
Since my diagnosis in October 2003, I have gained 40 lbs!!
I hope there is someone out there that can identify with me.
Thanks!

Sarah,

The short term memory loss was one of the first things (other than
falling asleep everywhere!) to clue me in that something was wrong.
I still feel like I'm going crazy when I can't remember a word, or
what I wanted to say, or what I did...  It has taken my family a bit
to get used to it.  I used to have an amazing memory and a lot of
people thought I was purposely forgetting things.  But most of the
time I'm okay.  I know that the Provigil has made this a little
worse.  My dose just increased by a lot and I noticed it right
away.  I find it is worse when I drink too much caffeine or have an
alcoholic drink, and when I have a burst of stress.  So, usually
after a big meeting at work or a long day at school, typically right
after I have taught, my mind goes blank.  I can't remember a thing.
I've started writing everything down, sometimes I bring a small tape
recorder to meetings, and I've done a lot of stress management -
TaiChi.

I've found with the Provigil, that some days it is wonderful, and
others it just doesn't work.  But I really haven't had all that many
side effects.  I did notice that my emotions became a little
more "jumpy", I was switching between being really up and excited to
down way too quickly, but I've balanced that off with a low dose of
an anti-depressant.  I also avoid eating too many high carbs, even
though I love them!  They'll make me sleepier and with sleepy, comes
some memory loss.

:-)  Overall, I really like the Provigil.  The only thing I did
learn about it this year was that if I take an allergy medication
with a decongestant, like Allegra-D, I get vertigo.  Apparently the
decongestant in it doesn't work well with the Provigil.  I don't
have this with over the counter stuff though.

It's sort of been a trial by experience for me.  The longer I'm on
the Provigil, the more I learn about how it works with me.

Thanks for your post!  It is so good to hear that someone else has
short term memory loss!!!!

Kristina

Kristina:
   I knew somthing was wrong when I (besides falling asleep too!)
stared writing goofy things I couldn't remember doing!! The one time
it really got to me I was working on my cash drawer report(I'm the
cashie/AR at a large car dealership) it's all math and I had a sleep
attack. Seems MATH of all things is a trigger for me??!!  I didn't
know then what was going on but I got up and walked out side. I was
really frustrated cuz i couldn't get the darn thing to balance and
figured fresh air would help.(yea right)  When I came back I saw I
had written "choppy waves" on the totals line!! I had no idea what I
had done or why but there in MY hand writing was this "choppy waves"
Scared the crap outs me cuz I NEVER had a black out! I mean not even
when I was younger and COULD drink like a damn fish!! Like you I have
a pretty good memory and to NOT remember doing something was
frightening to say the least!!
   As far as OTC meds go I have really bad sinus headaches and take
Benadryl sinus for them. It is the only thing that works to knock
them out. But it makes the Provigil pretty much a moot point!! I just
kinda "float" along not really caring about anything.  So I
understand your problem.
   I haven't taken any antidepressants (yet) but the way things are
going right now I may have too!  My dr did give somthing to help me
sleep through the night. but they just made me soo groggy in the AM
that I had to drink a whole pot of coffee just to wake up!!
The only other ting that makes me crazy is driving, I yell at myself
alot to try to fight it but most of the time I just have to pull over
and close my eyes for a minuite! I only live about 30-45 min from
work soo it makes me late ALOT!
   Just within the last few days I have learn alot about this disorder
and it's makeing me understand alot of what I do and why. Somethings
I never even thought of that can trigger an attack! I'm really glad I
found this club! To know there are others out there with the same
things happening to them makes me feel not so crazy after all!  :-D
I hope to learn alot more and I'm glad I'm not alone!!
Sarah

Hi:
   I haven't gained any weight but I think maye I have lost a little.
I don't and havent for prolly 6 years owned a scale.  I just got to
mad everytime I got on the thing,  So I tossed it out! I don't know
if it is the meds or just the fact I'm not as hungry as I was before.
I also don't seem to crave the stuff I used to. As a major chocoholic
I have kind of lost the taste for!
sarah