dear jeri,i've got alot wrong with me too,but not as much as u.my dr, had me get
a blood test done to check the enzymes in my liver since they determine how
drugs are metabolised in your body. whatever he had prescribed to me i didn't
respond to or would work and then stop after a month or so.after getting the
results back the dr. was stunned,to say the least my enzymes were totally
bizarre.that could be your problem if drugs aren't working for you.hope that was
helpful.cherie

----- Original Message -----
From: numberonesnoozer <jamieverdier@...>
To: centralohiosleepdisorders@yahoogroups.com
Sent: Sat, 01 Jan 2011 17:32:25 -0500 (EST)
Subject: Re: [central ohio sleep disorders] Questions about medication and
treatment













Thanks Jeri,


I agree. I am just having trouble finding the right medication. I have lowered
my dosage of dextroampetamine and my mood has been so much better since then.
Thanks for the advice happy new year! If you don't mind me asking, if you have
narcolepsy, what treatment are you currenlty on. You can send it to my e-mail if
you would like. If not that is fine. I appreciate your advice.



--- In centralohiosleepdisorders@yahoogroups.com, Jeri Milburn
<jeri.milburn@...> wrote:


>


> Hi Jamie, I'm going to be kind of vague here, but I think that you will find
that


> Once you get your sleep situated, you will notice your overall health improve.
Sleep deprivation causes so much stress to the body and essentially that is what
narcolepsy is...sleep deprivation. Our bodies cannot get the much needed restful
sleep and our whole bodies suffer. I sincerely think that once the narcolepsy is
responding to treatment,


> You will feel better all over. As far as alternative treatments, I have never
tried anything like that, but I know for certain that there is not one wonder
drug to cure N. We all respond differently to mess and sometimes it takes a long
time to find the right one and


> Sometimes you find the right one but it loses effectiveness after


> A while.  Just keep trying until you find what works for you!


> Hope this helps some.


> Take care, jeri


>


> Sent from my iPhone--please forgive typos!!!!


>


> On Dec 8, 2010, at 5:24 PM, Jamie Verdier <jamieverdier@...> wrote:


>


> > I have been diagnosed with narcolepsy, irritable bowel syndrome, generalized
anxiety disorder, interstitial cystis, GERD, restless legs syndrome and now my
docotor thinks I might have fibromyalgia.


> > 1) Has any other of you narcolepsyonians been diagnosed with these
"disorders" in addition to your narcolepsy and if so what medications do you
take to treat them?


> >


> > 2)Has anyone tried vitamin therapy for their narcolespy. Like those vitamin
shakes? Have you had any success with them. I am thinking about seeing an
herbologist? Any advice?


> >


> > 3) Has anyone tried alternative methods of treatment like acupunture etc.


> >


> > Please I really need help I am taking a lot of medications and am feeling
even worse because of side effects.


> >


> >


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


> >


> >


>


>


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


>








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

jeri,hi i do have narcolepsy & it only took drs 20yrs to find it out.of course
since my enzymes are screwy i'm pretty much a mess all the time.even most of the
antidepressants doesn't work on me.the last option my dr tried was the xyrem,the
first dose he tried didn't even faze me so he upped it and i managed to get 6
weeks out of it before it quit working.so now i'm just treading water,the dr.
increased the dose again but i'm afraid if i go back on it the same thing will
happen.either that or my insurance will stop paying for it.take care.cherie

----- Original Message -----
From: CHERYL MARTIN <wannabmainers@...>
To: centralohiosleepdisorders@yahoogroups.com
Sent: Tue, 04 Jan 2011 19:54:44 -0500 (EST)
Subject: Re: [central ohio sleep disorders] Questions about medication and
treatment













dear jeri,i've got alot wrong with me too,but not as much as u.my dr, had me get
a blood test done to check the enzymes in my liver since they determine how
drugs are metabolised in your body. whatever he had prescribed to me i didn't
respond to or would work and then stop after a month or so.after getting the
results back the dr. was stunned,to say the least my enzymes were totally
bizarre.that could be your problem if drugs aren't working for you.hope that was
helpful.cherie



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


From: numberonesnoozer <jamieverdier@...>


To: centralohiosleepdisorders@yahoogroups.com


Sent: Sat, 01 Jan 2011 17:32:25 -0500 (EST)


Subject: Re: [central ohio sleep disorders] Questions about medication and
treatment



Thanks Jeri,



I agree. I am just having trouble finding the right medication. I have lowered
my dosage of dextroampetamine and my mood has been so much better since then.
Thanks for the advice happy new year! If you don't mind me asking, if you have
narcolepsy, what treatment are you currenlty on. You can send it to my e-mail if
you would like. If not that is fine. I appreciate your advice.



--- In centralohiosleepdisorders@yahoogroups.com, Jeri Milburn
<jeri.milburn@...> wrote:



>



> Hi Jamie, I'm going to be kind of vague here, but I think that you will find
that



> Once you get your sleep situated, you will notice your overall health improve.
Sleep deprivation causes so much stress to the body and essentially that is what
narcolepsy is...sleep deprivation. Our bodies cannot get the much needed restful
sleep and our whole bodies suffer. I sincerely think that once the narcolepsy is
responding to treatment,



> You will feel better all over. As far as alternative treatments, I have never
tried anything like that, but I know for certain that there is not one wonder
drug to cure N. We all respond differently to mess and sometimes it takes a long
time to find the right one and



> Sometimes you find the right one but it loses effectiveness after



> A while.  Just keep trying until you find what works for you!



> Hope this helps some.



> Take care, jeri



>



> Sent from my iPhone--please forgive typos!!!!



>



> On Dec 8, 2010, at 5:24 PM, Jamie Verdier <jamieverdier@...> wrote:



>



> > I have been diagnosed with narcolepsy, irritable bowel syndrome, generalized
anxiety disorder, interstitial cystis, GERD, restless legs syndrome and now my
docotor thinks I might have fibromyalgia.



> > 1) Has any other of you narcolepsyonians been diagnosed with these
"disorders" in addition to your narcolepsy and if so what medications do you
take to treat them?



> >



> > 2)Has anyone tried vitamin therapy for their narcolespy. Like those vitamin
shakes? Have you had any success with them. I am thinking about seeing an
herbologist? Any advice?



> >



> > 3) Has anyone tried alternative methods of treatment like acupunture etc.



> >



> > Please I really need help I am taking a lot of medications and am feeling
even worse because of side effects.



> >



> >



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



> >



> >



>



>



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



>



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








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

Hi Everyone,

You should have just received a message of a "New file uploaded to
centralohiosleepdisorders".  That doesn't do it justice.  It gives information
about our upcoming meeting on Sunday, January 16 from 2-4.  The speaker will be
Jeff Karamol from OhioHealth Homereach talking about PAP masks and mask fit.

We will be meeting every other month this year and a schedule of all of our
meetings is included.

A report on Dr. Mignot's talk in November explaining his research into the
causes of narcolepsy is in there.

One of our members wrote about Dr. Helmut Schmidt who passed away in November.

Something for everyone!

Ellen

I wrote you a tempting message yesterday about all of the goodies that were in
our last mailing posted, including information about our next meeting on January
16, a schedule of our meeting plans for the year, a report on Dr. Mignot's talk
about research into the causes of narcolepsy, and a write up about Dr. Helmut
Schmidt.  Since then people have been gnashing their teeth because they couldn't
find it.  What you need to do is go onto our yahoo site and click on "files"
over at the left hand site of the page.  The file name is sleep 0111.  I think
it's the last file shown, but I'm not sure.

It shouldn't be this difficult.  Is there anyone who knows computers better than
me that can tell me how to make it easier?

Thanks

Ellen

Ellen,

Next time just let us know you posted it on the Yahoo group page...I think
people were expecting to get an actual email.  I'm part of several other
Yahoo groups and that's what we have to do.  A lot of people never actually
log onto the group page and instead just wait for emails to come.
Hope this might help??

Jeri :)

On Thu, Jan 6, 2011 at 3:31 PM, ellenhaider <ellenhaider@...> wrote:

>
>
> I wrote you a tempting message yesterday about all of the goodies that were
> in our last mailing posted, including information about our next meeting on
> January 16, a schedule of our meeting plans for the year, a report on Dr.
> Mignot's talk about research into the causes of narcolepsy, and a write up
> about Dr. Helmut Schmidt. Since then people have been gnashing their teeth
> because they couldn't find it. What you need to do is go onto our yahoo site
> and click on "files" over at the left hand site of the page. The file name
> is sleep 0111. I think it's the last file shown, but I'm not sure.
>
> It shouldn't be this difficult. Is there anyone who knows computers better
> than me that can tell me how to make it easier?
>
> Thanks
>
> Ellen
>
>
>



--
The greatest of all mistakes is to do nothing because we can do so little.
                            -Sir John Golding


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

Thanks Jeri.  That tells me more than I knew before.  I'll discuss it with some
people in the group who know more about this kind of thing than I do.  I'd
really like to send out e-mails.
We'll see.
 
I appreciate your help,
 
Ellen
--- On Thu, 1/6/11, jeri <jeri.milburn@...> wrote:


From: jeri <jeri.milburn@...>
Subject: Re: [central ohio sleep disorders] Where are the goodies
To: centralohiosleepdisorders@yahoogroups.com
Date: Thursday, January 6, 2011, 9:17 PM


Ellen,

Next time just let us know you posted it on the Yahoo group page...I think
people were expecting to get an actual email.  I'm part of several other
Yahoo groups and that's what we have to do.  A lot of people never actually
log onto the group page and instead just wait for emails to come.
Hope this might help??

Jeri :)

On Thu, Jan 6, 2011 at 3:31 PM, ellenhaider <ellenhaider@...> wrote:

>
>
> I wrote you a tempting message yesterday about all of the goodies that were
> in our last mailing posted, including information about our next meeting on
> January 16, a schedule of our meeting plans for the year, a report on Dr.
> Mignot's talk about research into the causes of narcolepsy, and a write up
> about Dr. Helmut Schmidt. Since then people have been gnashing their teeth
> because they couldn't find it. What you need to do is go onto our yahoo site
> and click on "files" over at the left hand site of the page. The file name
> is sleep 0111. I think it's the last file shown, but I'm not sure.
>
> It shouldn't be this difficult. Is there anyone who knows computers better
> than me that can tell me how to make it easier?
>
> Thanks
>
> Ellen
>
> 
>



--
The greatest of all mistakes is to do nothing because we can do so little.
                           -Sir John Golding


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



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

Yahoo! Groups Links








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

can be found in the files section and is name:

Sleep 0111.doc
2011 01 sleep mailing

or view below...

JANUARY-FEBRUARY, 2011

Central Ohio Sleep Disorders Support Group
c.o. 961 Farnham Road, Columbus, OH 43220
http://health.groups.yahoo.com/group/centralohiosleepdisorders

Anyone is welcome to attend our meetings. We are an informal patient support
group of people with various sleep disorders that 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.

Our traditional meeting time is from 2:00-4:00 pm on the THIRD Sunday of the
month.  Recently we have been meeting quarterly at Riverside with occasional
meetings at other locations.  With the New Year, though, come new possibilities.

WE WILL BE MEETING EVERY OTHER MONTH AT RIVERSIDE THIS YEAR.  TURN THE PAGE FOR
A FULL SCHEDULE OF SPEAKERS.  Thanks to Jennifer at OhioHealth Sleep Services
who set up the schedule and will be supporting us in our activities this year.

Please join us for our meeting Sunday, January 16 from 2-4pm
@ The Elizabeth Blackwell Center

In the first hour, Jeff Karamol, respiratory therapist with OhioHealth Homereach
will talk with us about PAP masks and mask fit.

In the second hour, we will support each other through group discussion.

The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214
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 of State Route 315. The Elizabeth Blackwell Center is just north
of the hospital on the west side of Olentangy River Road, near the Riverside
Health Center and Kobacker House. Visitor parking is free and is just to the
left and also behind the Center.


DR. EMMANUEL MIGNOT
It was a very special occasion for the people with narcolepsy who were able to
hear Dr. Mignot speak on November 6, 2010.  He is the chief researcher in the
United States working on unlocking the puzzle as to the causes of narcolepsy. 
We are grateful to the Drs. Schmidt who brought him to Columbus.

In 2000, Dr. Mignot and his team of researchers, working with narcoleptic dogs
at the Center for Narcolepsy Research at Stanford University, were instrumental
in discovering that most people with narcolepsy lack the neurotransmitter
hypocretin.  Hypocretin stimulates the brain to stay awake.  It has been
determined since then that HLA DQB1*0602 is the primary gene involved in the
development of narcolepsy. It is almost a certainty that narcolepsy is an
autoimmune disease (a disease where one's body attacks its own cells.)  Dr.
Mignot explained that he believes something causes the bodies of some of the
people who have that particular gene to think that hypocretin is a virus and
attack it.  Several pharmaceutical companies are now trying to manufacture
hypocretin.  That could be a big step towards more effective treatment of
narcolepsy.

The cause of narcolepsy is more complex than that, though. For one thing, most
people with that gene never get narcolepsy. It is now believed that narcolepsy
is caused by the interaction of several different genes with a variety of poorly
understood environmental factors.  For instance, regarding the environmental
factors, Dr. Mignot said that he has met several children who have developed
narcolepsy shortly after having a staph infection.

Blood Needed

Dr. Mignot showed us a graph analyzing the blood of people with narcolepsy. 
There was a big spike up of HLA DQB.  There were smaller spikes, though, of
other genes that have yet to be identified and surely play some role.

A method of combining blood samples from many different individuals has recently
been developed.  By using this method, it will now be possible to combine blood
samples of many people with narcolepsy to see what other genes we have in
common.  That is why it is so important to collect blood samples from as many
people with narcolepsy as possible.  If you haven't yet participated, you are
urged to do so.  Contact Mali Einen, the research coordinator at Stanford.  You
can e-mail her at  HYPERLINK "mailto:einen@..." einen@... or
call her at 650-721-7550.  She will send you a kit that includes a long
questionnaire to be filled out and the equipment you need to take to a lab to
get the blood work done.  It's a very concrete way to make a contribution to a
cause that is very personal to each of us who has narcolepsy.  We can be part of
the solution!

Brains Also Needed!

Dr. Mignot also spoke about how much invaluable information they have gained
from the brains of people with narcolepsy who have willed their brains to the
Stanford Brain Donation Program.  The brains are being used to understand the
process of the autoimmune attack against hypocretin (which takes place in the
brain).  They can also study the hypocretin system at the molecular and
pharmacological level, with the goal of finding new treatments.  I have a copy
of the donor packet, if you would like to look at it.  There are forms that must
be filled in completely.  When they receive the forms they will send information
to you for your doctor and others that you list in the form.  Then they will
contact you about twice a year to update your medical history.  You are free to
withdraw consent at any time.  If you have questions, contact Mali Einen.

If you go to the website 
http://www-med.Stanford.EDU/school/psychiatry/narcolepsy you will find
information about narcolepsy and the research going on at Stanford.  There is
even a link to a video made by the Discovery Channel that shows Dr. Mignot and
his narcoleptic dog named Bear.

For a person with narcolepsy, it's very exciting to see all of the progress
being made in discovering its cause and treatment.  Dr. Mignot struck me as
being as tenacious as a bulldog.  He's got this problem between his teeth and
he's not going to let go until he finds the solution!  That's why it's an
especially good time to join Narcolepsy Network.  Their newsletter is an
excellent way to keep up-to-date on the most recent discoveries.  To join,
contact them through  www.narcolepsynetwork.org or call toll free 888-292-6522. 
The individual membership fee is $35 with the memberships running Jan.-Dec.

written by Ellen Haider


DR. HELMUT SCHMIDT
The sudden passing of Dr. Helmut Schmidt on October 20, 2010 at the age of 71
came not only as a shock to all that knew him, but also with deepest sorrow.  I
know that many people around the world felt the loss of Dr. Schmidt, as he was
known for his dedication and was often referred to as a "Pioneer in Sleep
Medicine".

I remember the first time I heard about the field of Sleep Medicine in the early
1990's.  Dr. Schmidt, who opened one of the first sleep disorders centers in the
country at The Ohio State University Medical Center in 1975 and founded the Ohio
Sleep Medicine Institute in Dublin in 1990, was the guest on a radio talk
program.  Listening to the discussion, I realized that after 15 years I no
longer had to go through the daily struggles associated with all those weird
symptoms of what I would soon find out was narcolepsy.  Finally, here was a
professional who could help me when no one else could.  I immediately called to
make an appointment.

Promoting research, providing training, and educating patients and the general
public were important to Dr. Schmidt.  One example of how he accomplished this
is the annual "Keynote Symposium: Sleep Medicine" which he started in 1992.  It
provides an opportunity for healthcare professionals to learn from each other
about the latest research.

Dr. Schmidt was involved in so many professional organizations that one might
wonder how he was able to maintain a practice.  I think it's because he was
motivated by his dedication to his patients.  I'll never forget the times he
became my advocate with my insurance company.  He cared about each patient,
respected each one as an individual, and knew that they would receive the
benefits of his efforts.  Above all, he believed that each patient deserved to
experience quality in their lives.

I consider myself fortunate to have been one of Dr. Schmidt's patients.  He
always seemed to know what I needed—from a change in medications to words of
encouragement, a pep talk, a boost in confidence, reassurance.  I can still see
the twinkle in his eye that reflected his sense of humor and his warm smile that
radiated his caring and welcoming spirit.

Dr. Schmidt will be greatly missed by his family, friends, colleagues, and
patients like me.  In this time of sorrow, we need to remember and celebrate his
accomplishments and influence on all of us.  We are blessed to have known and
experienced him in our lives.

written by Karen Milhoan


2011 MEETING SCHEDULE mark your calendars now!

January 16: Jeff Karamol, RRT, OhioHealth Homereach - Topic: PAP Masks & Mask
Fit

March 20: John Eickholt, MD, ABPN, ABSM - Topic: Conquering Insomnia Through
Cognitive Behavioral Therapy and Mental Training

April 17: possible meeting with Markus Schmidt, MD, Ohio Sleep Medicine
Institute

May 15: Ray Sheridan, DDS - Topic: Dental Sleep Medicine

July 17: Erica Harris, BS, RPSGT - Topic: Understanding Sleep Studies From the
Sleep     Technologist's Perspective

August 21: Picnic at Whetstone Park, 5:00-7:00pm

September 18: Group Discussion

November 20: Richard Irene, MD, ABO - Topic: Surgical Solutions for Sleep
Disorders


WE ENCOURAGE OUR MEMBERS to join the national organizations that address their
individual concerns.  It's an excellent way to keep up-to-date on recent
developments in that field.
American Sleep Apnea Association   202-293-3650    www.apneasupport.org
Narcolepsy Network   888-292-6522    www.narcolepsynetwork.org
Restless Legs Syndrome Foundation   507-287-6465    www.rls.org
National Fibromyalgia Association   714-921-0150   www.fmaware.org

STEERING COMMITTEE VOLUNTEERS
Ellen Haider has narcolepsy.  614-459-0945   E-mail: ellenhaider@...
Laura Evert has narcolepsy.  614-784-8823
E-mail:  dreamiestgirlever@...
Mary Anderson has sleep apnea.  614-794-3060
E-mail:  marymar154@...
Harvey Newpoff has sleep apnea.   E-mail: northcompany2@...
Tanya Biesecker has sleep apnea. 614-262-7773


TO BE ADDED TO OR REMOVED FROM OUR US POSTAL MAILING LIST CONTACT
Ellen Haider, keeper of the mailing list, 614-459-0945, ellenhaider@...

TO BE ADDED TO OR REMOVED FROM OUR E-MAIL LIST THROUGH YAHOO GROUPS CONTACT 
HYPERLINK "http://health.groups.yahoo.com/group/centralohiosleepdisorders"
http://health.groups.yahoo.com/group/centralohiosleepdisorders

Thanks to OhioHealth Sleep Services for making the copies of this newsletter.

Just a last reminder of the support group's meeting this Sunday, January 16 from
2-4 at the Elizabeth Blackwell Center near Riverside Hospital.  Jeff Karamol,
respiratory therapist with OhioHealth Homereach will talk during the first hour
about PAP masks and mask fit.

Hope you can come,

Ellen

Please join us for our meeting Sunday, March 20 from 2-4pm
@ The Elizabeth Blackwell Center.
In the first hour Dr. John Eickholt will tell us about his program for
Conquering Insomnia Through Cognitive Behavioral Therapy and Mental Training.
Dr. John Eickholt's office is MidOhio Sleep Services in Worthington at 7811
Flint Rd.  As one part of his work there he has established Neuro Behavioral
Systems LLC for patients who want to conquer insomnia through behavioral
therapy. It is an intensive program of group and individual therapy that takes
place over the course of several weeks.  The cost of the program is covered by
many insurance policies.

In the second hour, we will support each other through group discussion.

As always at our meetings, refreshments will be served and you are welcome to
contribute a snack.

The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214
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 of State Route 315. The Elizabeth Blackwell Center is just north
of the hospital on the west side of Olentangy River Road, near the Riverside
Health Center and Kobacker House. Our meetings are held in the auditorium. 
Visitor parking is free and is just to the left and also behind the Center.

Please join us for a specially scheduled meeting Sunday, April 17 from 2-4pm at
the Ohio Sleep Medicine Institute in Dublin.

Dr. Markus Schmidt will be our host and talk to us about
Clinical Management and Treatment of Narcolepsy.

Dr. Schmidt contacted us several months ago and expressed an interest in being
supportive of our group. He invited us to his office in Dublin for a meeting.

He has recently greatly improved his website at www.sleepmedicine.com.
Included on the website under "publications" in the archives of their newsletter
for December 29, 2010.  It is a good summary of Dr. Mignot's presentation of his
research that was held at the Schmidt's New Albany office on November 6.

Directions to Ohio Sleep Medicine Institute
Dr. Schmidt's office in Dublin is located at 4975 Bradenton Avenue Dublin, OH
43017.  It is just west of Frantz Rd. There is a traffic light at Bradenton,
which is about half way between U.S. 161 and Hayden Run Rd. (not far from Tuttle
Mall).
You will find directions and a map on their website.

MARCH-APRIL, 2011

Central Ohio Sleep Disorders Support Group
c.o. 961 Farnham Road, Columbus, OH 43220
http://health.groups.yahoo.com/group/centralohiosleepdisorders


MEETINGS IN BOTH MARCH AND APRIL!!

Our traditional meeting time is from 2:00-4:00 pm on the THIRD Sunday of the
month.  Just this year we have begun meeting every other month rather than
quarterly at the Elizabeth Blackwell Center which is part of the Riverside
Complex.  Jennifer at OhioHealth Sleep Services set up a schedule of interesting
programs listed on page 4 and will be supporting us in our activities this year.

In addition, Dr. Markus Schmidt has graciously invited us to his Dublin office
in April.  So we have scheduled meetings for both March and April.

We are committed to meeting this often through this year, but not beyond, so
your attendance will determine whether this opportunity will continue.


Please join us for our meeting Sunday, March 20 from 2-4pm
@ The Elizabeth Blackwell Center
In the first hour Dr. John Eickholt will tell us about his program for
Conquering Insomnia Through Cognitive Behavioral Therapy and Mental Training    
(More information on p. 2)


In the second hour, we will support each other through group discussion.
As always at our meetings, refreshments will be served and you are welcome to
contribute a snack.

————


Please join us for a specially scheduled meeting Sunday, April 17 from 2-4pm
  @ Ohio Sleep Medicine Institute in Dublin
Dr. Markus Schmidt will be our host and talk to us about
Clinical Management and Treatment of Narcolepsy (More information on p. 2)





More about our meeting with Dr. Eickholt on March 20

Dr. John Eickholt's office is MidOhio Sleep Services in Worthington at 7811
Flint Rd.  As one part of his work there he has established Neuro Behavioral
Systems LLC for patients who want to conquer insomnia through behavioral
therapy. It is an intensive program of group and individual therapy that takes
place over the course of several weeks.  The cost of the program is covered by
many insurance policies.

The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214
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 of State Route 315. The Elizabeth Blackwell Center is just north
of the hospital on the west side of Olentangy River Road, near the Riverside
Health Center and Kobacker House. Our meetings are held in the auditorium. 
Visitor parking is free and is just to the left and also behind the Center.

—

More about our meeting with Dr. Schmidt on April 17.

Dr. Markus Schmidt contacted us several months ago and expressed an interest in
being supportive of our group and invited us to his office in Dublin for a
meeting..  He has recently greatly improved his website at
www.sleepmedicine.com.
Included on the website under publications is the archives of their newsletter
for December 29, 2010 is a good summary of Dr. Mignot's presentation of his
research that was held at their New Albany office on November 6.

Directions to Ohio Sleep Medicine Institute
Dr. Schmidt's off ice in Dublin is located at 4975 Bradenton Avenue Dublin, OH
43017.  It is just west of Frantz Rd. There is a traffic light at Bradenton,
which is about half way between U.S. 161 and Hayden Run Rd. (not far from Tuttle
Mall).
You will find directions and a map on their website.  There is a map provided on
their website.

Anyone is welcome to attend our meetings. We are an informal patient support
group of people with various sleep disorders that 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.




SLEEP HYGIENE

The term "sleep hygiene" refers to a variety of tried and true coping strategies
that can help us have a good night's sleep and full daytime alertness.

1. Maintain a regular bed time and wake time schedule including weekends.  By
sticking to a regular schedule, we reinforce the circadian clock in our brain
that regulates our sleep-wake cycle.

2. Establish a regular, relaxing bedtime routine such as soaking in a hot bath
or hot tub and then reading a book, listening to soothing music, or practicing
relaxation therapy.  This helps separate your sleep time from the stress of your
day.

3. Create a sleep-conducive environment that is dark, quiet, comfortable and
cool.

4. Sleep on a comfortable mattress and pillows.

5. Use your bedroom only for sleep and intimacy.  Take work materials, computers
and televisions out of the sleeping environment.

6. Finish eating at least 2-3 hours before your regular bedtime.  Eating or
drinking too much may make you less comfortable when settling down for bed. 
Some people, though, find milk or herbal, non-caffeinated teas to be soothing
and a helpful part of a bedtime routine.

7. Exercise regularly.  It is best to complete your workout a few hours before
bedtime.  Regular exercise contributes to sounder sleep.  However, exercising
right before going to bed makes us more alert because our body temperature rises
during exercise.  A cooler body temperature is associated with sleep onset.

8. Avoid caffeine (coffee, tea, soft drinks, chocolate) close to bedtime.  The
stimulant in caffeine remains in the body on average from 3 to 5 hours, but can
affect some people up to 12 hours later.

9. Avoid nicotine.  Used close to bedtime, it can lead to poor sleep.  Nicotine
is also a stimulant.

10. Avoid alcohol close to bedtime.  Although many people think of alcohol as a
sedative, it actually disrupts sleep, because as the body metabolizes the
alcohol it causes nighttime awakenings.



2011 MEETING SCHEDULE mark your calendars now!

  March 20: John Eickholt, MD, ABPN, ABSM - Topic: Conquering Insomnia Through
Cognitive Behavioral Therapy and Mental Training

April 17: Dr. Markus Schmidt - Topic: Clinical Management and Treatment of
Narcolepsy
Meeting location: Dr. Schmidt's office in Dublin

May 15: Ray Sheridan, DDS - Topic: Dental Sleep Medicine

     July 17: Erica Harris, BS, RPSGT - Topic: Understanding Sleep Studies From
the Sleep     Technologist's Perspective

    August 21: Picnic at Whetstone Park, 5:00-7:00pm

   September 18: Group Discussion

   November 20: Richard Irene, MD, ABO - Topic: Surgical Solutions for Sleep
Disorders


WE ENCOURAGE OUR MEMBERS to join the national organizations that address their
individual concerns.  It's an excellent way to keep up-to-date on recent
developments in that field.
American Sleep Apnea Association   202-293-3650   www.apneasupport.org
Narcolepsy Network   888-292-6522     www.narcolepsynetwork.org
Restless Legs Syndrome Foundation   507-287-6465    www.rls.org
National Fibromyalgia Association   714-921-0150   www.fmaware.org


STEERING COMMITTEE VOLUNTEERS
§ Ellen Haider has narcolepsy.  614-459-0945   E-mail: ellenhaider@...
§ Laura Evert has narcolepsy.  614-784-8823
· E-mail:  dreamiestgirlever@...
§ Mary Anderson has sleep apnea.  614-794-3060
· E-mail:  marymar154@...
§ Harvey Newpoff has sleep apnea.   E-mail: northcompany2@...
§ Tanya Biesecker has sleep apnea. 614-262-7773


TO BE ADDED TO OR REMOVED FROM OUR US POSTAL MAILING LIST CONTACT
Ellen Haider, keeper of the mailing list, 614-459-0945, ellenhaider@...

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

Thanks to OhioHealth Sleep Services for making the copies of this newsletter.

Don't miss hearing Dr. John Eickholt talk about his program for Conquering
Insomnia Through Cognitive Behavioral Therapy and Mental Training this Sunday,
March 20,2011.  The meeting will be from 2:00-4:00 at The Elizabeth Blackwell
Center.  Dr. Eickholt will speak for the first hour, followed by more general
group discussion.

Dr. Eickholt's office is MidOhio Sleep Services in Worthington at 7811 Flint
Road.  He will be telling us about the intensive program of group and individual
therapy that takes place over the course of several weeks there.

The Elizabeth Blackwell Center of Riverside Methodist Hospital is at 3635
Olentangy River Road.  Our meetings are held in the auditorium.

hello Eric Adkins here new to the group Dx of narcolepsy in august of 2010
looking for someone to talk to to learn different strategies for care of
condition. thanks all




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

hi eric,this is cherie,i've got narcolepsy and it only took drs 25 yrs to figure
it out.of course when i did finally know what i had it was total denial.even now
my family members still says i can't have it since its a genetic disorder,but of
course they don't understand it just like all the drs i was bounced back and
forth to.what made it worse for me is the drs wanted to blame it all on that i
had sleep apnea,maybe so but that wasn't it totally.i had to go through surgery
for sleep apnea to find out that there was another cause to my sleepiness.and
now i have to deal with it and what makes it so unique for me is the enzymes in
my liver which determines how your body responds to medications are defective.so
i can't take the normal meds that are prescribed and so i get to handle the
downfalls all on my own.email back if you would like to know more.cherie

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

Hi all. I have narcolepsy and am now taking midnite and traznodone which seems
to be working better but I am still having crazy violent dreams, I know that
vivid dreams are normal for us narcolepsians, but does anyone else have violent
dreams? Have you found anything to help? Also, I just found out that I have a
lot of food intolerances, gluten and wheat is on the list. I have started a
gluten/wheat free diet and do feel like I have alittle more energy. Anyone else
gluten/wheat intolerant? Can you suggest any brands you use, or stores that have
a wide selection of gluten/wheat free products. Thanks.

Hi All,

This is a reminder that our group is scheduled for a special meeting the third
Sunday of this month, April 17 from 2:00 to 4:00 at Dr. Markus Schmidt's office
in Dublin, Ohio.  Dr. Schmidt will talk about "Clinical Management and Treatment
of Narcolepsy".

Dr. Schmidt has posted information about it on his website sleepmedicine.com. 
There is also a map and directions to his office on his website.  Dr. Schmidt
has suggested an RSVP to contact@....

I advise that you decide which is more likely to cause you to attend.  If you
think that RSVPing will give you an extra little motivation to attend, I would
RSVP.  If you think that the request for an RSVP might discourage you from
attending, I would ignore the request.

Us sleepy people need to use psychology on ourselves!

Write me if you have any questions,

Ellen

MAY-JUNE, 2011


Central Ohio Sleep Disorders Support Group
c.o. 961 Farnham Road, Columbus, OH 43220
http://health.groups.yahoo.com/group/centralohiosleepdisorders



Anyone is welcome to attend our meetings. We are an informal patient support
group of people with various sleep disorders that 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.

Our traditional meeting time is from 2:00-4:00 pm on the THIRD Sunday of the
month.  Recently we have been meeting every other month at the Elizabeth
Blackwell Center at Riverside with occasional meetings at other locations.




Please join us for our meeting Sunday, May 15 from 2-4pm
@ The Elizabeth Blackwell Center

Ray Sheridan, DDS will talk with us on the subject of Dental Devices for Sleep
Apnea.  Also, representatives from Homereach will be there with a variety of
masks for attendees to look at and discuss.

Refreshments will be served.  Feel free to help out by bringing a snack to
share.


The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214
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 of State Route 315. The Elizabeth Blackwell Center is just north
of the hospital on the west side of Olentangy River Road, near the Riverside
Health Center and Kobacker House. Visitor parking is free and is just to the
left and also behind the Center.

ON THE WEB

www.sleepconnect.com
Check out this website for support in the form of discussions, videos, news
articles, blog articles, product reviews, information about books, and more!

Other useful websites are:
Sleep Care 				 http://sleepcare.com
American Academy of Sleep Medicine www.sleepeducation.com
National Sleep Foundation 	 www.sleepfoundation.org
American Sleep Apnea Association   	 www.apneasupport.org
Narcolepsy Network   			 www.narcolepsynetwork.org
Restless Legs Syndrome Foundation   	 www.rls.org
National Fibromyalgia Association   	 www.fmaware.org

And found on our old favorite www.talkaboutsleep.com:
"Bells and Whistles:  Do you know enough about your CPAP Machine?"
This article describes features available on CPAP machines that make the machine
much more user friendly.  You need to enable the features in order to use them,
so you may not even know about them.  There are 3 different categories of
features addressed in the article.
1. Ramps initiate pressure at a low setting and slowly increases over a preset
period of time.
2. Pressure relief helps deal with the continuous flow of air pressure during
exhalation.
3. Heated humidification makes for a much more pleasant experience.
tells in detail what is available for use on the machines from 3 different
manufacturers.

T-SHIRT ENVY?

Did Ellen detect some people who were envious of the t-shirt she wore to the
last meeting?  Sue Evans, her partner in forming this group twenty-five years
ago (yikes!!) found them advertised on the web.  They say "Looking for my dream
job where I don't have to be awake!"  You too can get one at
www.whatonearthcatalog.com or by calling 1-800-945-2552.

2011 MEETING SCHEDULE
FEEDBACK, PLEASE!
Here are the remaining programs scheduled for this year.  We have scheduled more
meetings with more speakers.  How do you like the changes we have made?  We
would really appreciate your feedback.  One way we will judge if the new
approach should be continued is by attendance.  Another is by your comments. 
You can make them at our Yahoo site
http://health.groups.yahoo.com/group/centralohiosleepdisorders, to Ellen at
ellenhaider@... or 614-459-0945 or to one of the other leaders of the
group.

May 15: Ray Sheridan, DDS - Topic: Dental Sleep Medicine

  July 17: Erica Harris, BS, RPSGT - Topic: Understanding Sleep Studies From the
Sleep     Technologist's Perspective

  August 21: Picnic at Whetstone Park, 5:00-7:00pm

   September 18: Group Discussion

   November 20: Richard Irene, MD, ABO - Topic: Surgical Solutions for Sleep
Disorders

DR. SCHMIDT'S TALK

At our meeting in April, Dr. Markus Schmidt talked about Clinical Management and
Treatment of Narcolepsy at his Dublin office.  The main point that he was making
was that to successfully deal with narcolepsy you need to look at everything
that is happening in the person's life.  What are all of the causes of
sleepiness in that individual?  Dr. Schmidt's website is www.sleepmedicine.com.

DR. EICKHOLT'S TALK

At our meeting in March, Dr. John Eickholt told us about the training programs
that he has developed using cognitive behavioral therapy.  There are two
separate programs—"Conquering Insomnia Through CBT and Mental Training" and
"Managing Chronic Pain Through CBT and Mental Training".  Both are conducted at
his offices at 7811 Flint Rd. in Worthington.  They are six-week programs where
the patient works one on one with a trainer.  Each session is two hours long. 
There is a manual that accompanies the training and homework given which
includes practicing relaxation twice a day.  Most insurance companies at least
partially cover this kind of therapy.

Dr. Eickholt spoke of how the programs have helped people with many different
types of problems including those with insomnia, sleep apnea and headaches.

More information is available at www.nbsempowers.com or at 614-EMPOWER
(614-367-6937).

Join us this Sunday, May 15 from 2-4pm to learn about Dental Devices for Sleep
Apnea from Ray Sheridan, DDS.  Representatives from Homereach will also be there
with a variety of CPAP masks.

The meeting will be at our usual place, The Elizabeth Blackwell Center at 3635
Olentangy River Rd.

Please join us Sunday, July 17 from 2-4pm
@ The Elizabeth Blackwell Center

Erica Harris, BS, RPSGT will talk about UNDERSTANDING SLEEP STUDIES from her
perspective as a Sleep Technologist.
Refreshments will be served.

The Elizabeth Blackwell Center of Riverside Methodist Hospital
3635 Olentangy River Road, Columbus, OH 43214
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 of State Route 315. The Elizabeth Blackwell Center is just north
of the hospital on the west side of Olentangy River Road, near the Riverside
Health Center and Kobacker House. Visitor parking is free and is just to the
left and also behind the Center.

AND…DON'T MISS OUR
PICNIC-POTLUCK!

Sunday, August 21 from 5:00-7:00

at Whetstone Park in Clintonville.

Mark your calendars now!

Come out and play with us at our picnic/potluck August 21
5:00-700 at Whetstone Park!

We will meet to share food + fun + heartfelt understanding.  Please bring a dish
of food to share, but if you cannot, just bring yourself.  All else will be
provided.  We will be there rain or shine (so hope for sunshine).

Just for fun, we will have a white elephant gift exchange.  Bring a wrapped gift
and we will play a game where you try to steal the best gift for yourself.  If
you have extra lawn chairs, bring those too.

For those who wish to stay, the Clintonville Community Band and Choir will be in
the Park of Roses at 7:00 for a free concert.

How to Get There:  The entrance to Whetstone Park and the Park of Roses is next
to the Whetstone Branch of the Columbus Metropolitan Library at 3909 North High
Street.  It is north of North Broadway and south of Henderson and Cook.  Take
the road back until it crosses a small bridge.  Make a left after the bridge and
look for the Sleep Picnic sign.

SLEEP AND DEPRESSION

For those of us with a special interest in sleeping well, Dr. Rubin Naiman's
online quarterly Mindful Sleep, Mindful Dreams Newsletter can be a very helpful
resource.  Rubin Naiman, PhD, is at the Arizona Center for Integrative Medicine
at the University of Arizona in Tucson and is a proponent of behavioral sleep
therapy.  You can subscribe to the newsletter at www.drnaiman.com.

In his Spring, 2011 newsletter, Dr. Naiman has an article about "Circadian
Rhythm and Blues—The Interface of Depression with Sleep and Dreams".  He
explains that people with insomnia are excessively wakeful or hyperaroused,
running at an increased metabolic rate 24 hours per day.  This leads us to a
state of depression where we always feel fatigued.

And insomnia is not simply about sleep loss, but also about disrupted REM sleep
or dream loss.  Healthy dreaming helps us process and heal emotions.  REM dreams
in the first part of the night appear to process and diffuse residual negative
emotion from the waking day.  Dreams later in the night integrate this material
into one's sense of self.  Dr. Naiman describes dreaming as a kind of
psychological yoga.

He goes on to say that most of the newer antidepressants are REM suppressant
stimulants that essentially mask symptoms of depression by suppressing dreaming
and encouraging excessive wakefulness.

Dreaming is antidepressive.  It restores something expansive and rhythmic to the
flow of consciousness.

The full article is available at
http://www.psychologytoday.com/blog/mindful-sleep-mindful-dreams.  There is also
a Part II there that recommends steps to take that will help us alter this
destructive pattern.

NEWS FOR THOSE WITH NARCOLEPSY

Narcolepsy Network is conducting a study of women's perceptions of managing
past, current, and/or future pregnancies with narcolepsy and/or idiopathic
hypersomnia.  All women with narcolepsy are invited to participate in this
preliminary survey.  The data will be used to write an article for the NN
website and newsletter.  This data will also be used to form a larger, more
comprehensive research study.  No information or data from individuals will be
published in a way that can identify a specific person.

The Narcolepsy Network's annual conference will be held Thursday, October
13-Sunday, October 16, 2011 in Las Vegas.  (Feeling lucky?)  More information is
available at www.narcolepsynetwork.org.

ON THE WEB
Sleep connect 		 www.sleepconnect.com
Sleep Care 			 http://sleepcare.com
Talk about Sleep 		 www.talkaboutsleep.com:
American Sleep Apnea Association    www.apneasupport.org (202-293-3650)
Narcolepsy Network   		 www.narcolepsynetwork.org (888-292-6522)
Restless Legs Syndrome Foundation    www.rls.org (507-287-6465)
National Fibromyalgia Association    www.fmaware.org (714-921-0150)
National Sleep Foundation  www.sleepfoundation.org

2011 MEETING SCHEDULE
FEEDBACK, PLEASE!

Here are the remaining programs scheduled for this year.  We have scheduled more
meetings with more speakers.  How do you like the changes we have made?  We
would really appreciate your feedback.  One way we will judge if the new
approach should be continued is by attendance.  Another is by your comments. 
You can make them at our Yahoo site
http://health.groups.yahoo.com/group/centralohiosleepdisorders, to Ellen at
ellenhaider@... or 614-459-0945 or to one of the other leaders of the
group.

July 17: Erica Harris, BS, RPSGT - Topic: Understanding Sleep Studies From the
Sleep     Technologist's Perspective

  August 21: Picnic at Whetstone Park, 5:00-7:00pm

   September 18: Group Discussion

   November 20: Richard Irene, MD, ABO - Topic: Surgical Solutions for Sleep
Disorders

DON'T MISS OUR
PICNIC-POTLUCK!

Sunday, August 21 from 5:00-7:00

at Whetstone Park in Clintonville.

Mark your calendars now!

Come out and play with us at our picnic/potluck August 21
5:00-700 at Whetstone Park!

We will meet to share food + fun + heartfelt understanding.  Please bring a dish
of food to share, but if you cannot, just bring yourself.  All else will be
provided.  We will be there rain or shine (so hope for sunshine).

Just for fun, we will have a white elephant gift exchange.  Bring a wrapped gift
and we will play a game where you try to steal the best gift for yourself.  If
you have extra lawn chairs, bring those too.

For those who wish to stay, the Clintonville Community Band and Choir will be in
the Park of Roses at 7:00 for a free concert.

How to Get There:  The entrance to Whetstone Park and the Park of Roses is next
to the Whetstone Branch of the Columbus Metropolitan Library at 3909 North High
Street.  It is north of North Broadway and south of Henderson and Cook.  Take
the road back until it crosses a small bridge.  Make a left after the bridge and
look for the Sleep Picnic sign.