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narcolepsy nightmares

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Ms CC

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Oct 13, 1999, 3:00:00 AM10/13/99

I. from correspondense with certain lovely individuals have realised that I
probably do have narcolepsy but as i live in the uk have found a rather
unresponsive approach to the subject.
I had an interview with a group of psychiatrists due to my eating disorers
and they, when trying to understand my mental state, found out about my
constant sleep attacks etc. seemed very uncertain that I was telling the
truth even suggested that it was because I had not had enough sleep at
night. this totally discouraged me but I am still battling on one does not
just fall asleep while walking across a room when just tired.
I am still being evaluated but have the uncertainty that my disorder will
not b recognised.
I just wanted everyone to know how difficult it can be if one is not in the
us.

I assume they will just try to up my dosage of prosac again (oh god)

Cordelia

Mongo

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Oct 13, 1999, 3:00:00 AM10/13/99

(posted and e-mailed)
Hello Cordelia -

Many of us have found that the average doctor (any who does not specialize in sleep disorders) knows
very little about sleep and sleep disorders, at least here in the US. From what I have observed on
this and the alt.support.sleep-disorder newsgroups, the UK isn't any better.

I have narcolepsy that began when I was 13 and was not diagnosed until I was 50, after I had taken a
disability retirement because I was unable to stay awake at work. This is despite the fact that I
complained about being excessively sleepy in every complete physical I had beginning in my early
20s. So it is not unusual to have doctors fail to recognize narcolepsy.

I will e-mail you and also post a list of links about sleep disorders. Narcolepsy is in Section C.
There are two web sites that are based in the UK: UKAN (item C7), a narcolepsy association based in
the UK and a wonderful new site (NAPPS, item C11) created by sleepycat, who posts on this newsgroup.
Sleepycat (Cathy) was diagnosed with narcolepsy a year or two ago (if I remember correctly) and was
appalled at the lack of support for narcoleptics. Amazingly, she summoned the energy to organize a
support group and has put together the NAPPS web site. I love the cat illustrations that she has on
the web pages, especially the one wired for a sleep test (you'll have to check out all of the
pages).

UKAN, item C7 on the list that I will post, is at:
http://www.narcolepsy.org.uk/
NAPPS, item C11, is at:
http://www.napps.cwc.net/
Did I mention that I love sleepycat's NAPPS site <g>?

Cordelia, I wish you the best in finding a treatment that helps you. I don't think Prozac is the
answer. The traditional treatment for the excessive sleepiness of narcolepsy is an amphetamine like
Dexedrine or an amphetamine-related medication like Cylert (pemoline) or Ritalin. However there is
a relatively new medication specifically for narcolepsy. It is modafinil, sold in the US since Feb,
1999, under the name Provigil. It has been available in the UK for a longer time. I think it is
sold as Provigil there, also, but sleepycat could tell you for certain.

I have been using Provigil only since May; before that I had used Cylert since my diagnosis in 1992.
I VERY much prefer Provigil. It makes me alert and awake without being overstimulated and jittery
the way that Cylert does. I take one 200mg tablet of Provigil in the morning only.

Please check out the web sites on narcolepsy in Section C of the list that I will post and e-mail
you. I think that you might also benefit checking out some of the general sites in Section A,
especially the ones that give you a quick overview of many sleep disorders and also the ones that
discuss the sleep process itself. It is very useful to understand what normal sleep is so that you
can tell how your sleep is different.

You mention that you have an eating disorder. I and many others have reported eating too much
because eating helps us stay awake and more active. This applies not only to narcolepsy but even
more so to sleep apnea (which I also have). Many people who have eaten too much in the past find
that they are no longer so hungry once their sleeping disorders are successfully treated. Perhaps
this may happen for you, too! (Of course, maybe your eating disorder is that you don't eat enough!
Wish I had that problem....)

Regards,
Kent Taylor (Mongo)

Ms CC wrote in message <7u2ve8$2hfa$1...@quince.news.easynet.net>...

Mongo

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Oct 13, 1999, 3:00:00 AM10/13/99

================================================================

Here is a collection of sleep and sleep-disorder links that I have selected from many
that I have seen because I think these are very useful for someone who is starting to
look for information about sleep disorders. Section A is general information that gives
an overview of various sleep disorders. Section B is about sleep apnea. Section C is
about narcolepsy. Section D is about sleep related movement disorders, such as restless
leg syndrome (RLS), periodic limb movement disorder (PLMD), sleep starts, etc.
Section E is about sleep paralysis. Section F is about insomnia. Section G is about
Delayed Sleep Phase Syndrome (DSPS). Section H is about night terrors (pavor nocturnus),
sleep-walking, enuresis, etc. Section I is about Night Eating Syndrome.

Following those is a list of sleep-related newsgroups.

There are other disorders, too, for which I have not provided separate sections of links.
Item A2 has links to some of these other disorders.

Thanks to Paul Kemp, this list is also available at the following web page (note that the
URL has changed as of 22 September 1999):
http://www.btinternet.com/~kemp.paul/mongo.html

================================================================
----- A: General information about sleep and sleep disorders

(A1) Web page with short summary of normal sleep and sleep disorders:
http://www4.umdnj.edu/med/slepsymp.html

(A2) Sleep Net collection of links with ratings (very useful):
http://www.sleepnet.com/links.htm

(A3) Info about a variety of sleep disorders, including descriptions, diagnoses,
treatments, and related links. Still under construction but much information nonetheless.
Note: this page points to additional pages - be sure to check them all.
This is page one of eight.
http://members.aol.com/THRVSleep/Diso.html

(A4) SleepNet "Everything you wanted to know about sleep disorders but were too tired
to ask"; contains discussion forums, info about disorders, sleep links, news, etc
http://www.sleepnet.com/index.shtml (home page)
http://www.sleepnet.com/wwwboard/wwwboard.html (discussion forums)

(A5) American Sleep Disorders Association (ASDA) (oriented towards medical professionals)
http://www.asda.org
American Sleep Disorder Association list of accredited sleep centers and labs
http://www.asda.org/centers.htm

(A6) National Sleep Foundation (NSF)
http://www.sleepfoundation.org

(A7) Glossaries of sleep related terms
http://members.aol.com/blackcover/glossary.html
http://www.geocities.com/HotSprings/Spa/4752/page1.html#term16

(A8) National Library of Medicine (part of National Institute of Health) (USA)
http://www.nlm.nih.gov/ (home page)
http://medlineplus.nlm.nih.gov/medlineplus/ (allows searching for med info)

(A9) Websciences.org publications
BiblioSleep - bibliography of sleep related papers from 1992 to present
http://www.websciences.org/bibliosleep/
NAPS - New Abstracts and Papers in Sleep; recent papers on sleep topics
http://www.websciences.org/bibliosleep/naps/

(A10) Basics of sleep behavior from UCLA
http://bisleep.medsch.ucla.edu/sleepsyllabus/

(A11) Sleep Medicine home page; collection of links in MANY categories: support groups,
sources of information, books, medications, etc., etc.; very useful for its breadth
http://www.users.cloud9.net/~thorpy/welcome.html

(A12) Sleep Center, Inc; a variety of sleep-related info, including an excellent link list
Note: these links now appear to be broken
http://www.sleep-central.com/index.htm (main page)
http://www.sleep-central.com/f_links.htm (list of links around the world)

(A13) National School of Sleep Medicine (NSSM); oriented towards health professionals but
there are useful links under "Support Links" and "library"
http://sleepmedicine.org/

(A14) KidsHealth.org; info about childhood sleep disorders
http://kidshealth.org/parent/healthy/sleep_disorder.html

(A15) Healthology.com; sleep disorders and sleep hygiene
http://www.healthology.com/sleepdisorders/frameset.html

(A16) Sleep Medicine Associates of Dallas, Texas; info about sleep disorders, CPAP tips,
Epworth Sleepiness Test (self-quiz with scoring)
http://www.sleepmed.com/index.html
Glossary of sleep and sleep test terms and abbreviations from the same site
http://www.sleepmed.com/glossary.html

(A17) Newcastle Sleep Disorders Centre (Australia)
Information about normal sleep and about several sleep disorders
http://www.newcastle.edu.au/department/md/sleep/index.html

(A18) Dr. Koop's info about sleep disorders (has pages on several disorders)
http://www.drkoop.com/adam/mhc/top/000800.htm

(A19) Cephalon Inc.'s excessive daytime sleepiness (EDS) site
(Cephalon markets Provigil)
http://www.daytimesleep.org/what.htm

(A20) SleepNet's guide to sleep labs
http://www.sleepnet.com/slplabs.htm

(A22) Wake Forest University Dept. of Neurology; descriptions of sleep test and
several sleep disorders; a convenient, short overview
http://www.bgsm.edu/neurology/department/diagneuro/disorder.html

================================================================
----- B: Sleep apnea information

(B1) American Sleep Apnea Association (ASAA):
http://www.sleepapnea.org/

(B2) Phantom Sleep Resources (primarily sleep apnea, with self-test quiz and FAQ)
http://www.newtechpub.com/phantom/
http://www.newtechpub.com/phantom/faq/osa_faq.htm (very good FAQ)

(B3) Conjo Distributing home page. This is a supplier's web-site that has photos of
CPAP equipment, many useful tips, equipment cleaning instructions, illustrations of
obstructive sleep apnea, etc, and of course a catalog and price list. Although I have
had no dealings with Conjo, I have seen many positive comments about the company and
its owner on the alt.support.sleep-disorder newsgroup. Certainly the web pages are
very informative.
http://www.cpapman.com/

(B4) Tony Polson's sleep apnea page (UK)
http://www.scalby.freeserve.co.uk/osa.htm

(B5) Paul Kemp's wonderful photos of the popular Resmed/Sullivan Mirage mask (UK)
http://www.btinternet.com/~kemp.paul/mirage/
and his guide to building your own manometer for checking a CPAP's pressure
http://www.btinternet.com/~kemp.paul/manometer/
and how he converted his CPAP to operate at 12V
http://www.btinternet.com/~kemp.paul/12vcpap/

(B6) Mike's Trach Page - about the tracheostomy operation for OSA; also FAQ and OSA terms
http://members.aol.com/citylinc/osa/index.htm

(B7) A.W.A.K.E. (Alert, Well, And Keeping Energetic) is a support group for people with
sleep apnea and their families; information about AWAKE groups in your area or about
starting an AWAKE group may be obtained by sending an e-mail request to:
aw...@sleepapnea.org

(B8) Sleep Matters, the quarterly newsletter of the UK Sleep Apnoea (British for apnea)
Trust Association (SATA), a registered charity "... to improve the lot of sleep apnoea
patients, their partners and their families"
http://www.sleepmatters.org

(B9) "Obstructive Sleep Apnoea" (British spelling of apnea) by Dr John Loadsman of
Australia; thorough description of apnea and its causes, diagnosis, consequences,
treatment, etc.
http://www.usyd.edu.au/su/anaes/lectures/Sleep_Apnoea.html

(B10) John B. Fisher's list of URLs on health risks and consequences of sleep apnea;
note that there are many entries from the site of Kerrin Leon White, M.D., a physician
with severe sleep apnea; Dr. White's home page may be found at:
http://www.geocities.com/HotSprings/Spa/4752/index.html
John's list (many thanks, John!):

(B11) Dr. Koop's Medical Encyclopedia - apnea
http://www.drkoop.com/centers/Sleep_Apnea/ (main page)
http://www.drkoop.com/adam/mhc/top/000811.htm (obstructive sleep apnea)
http://www.drkoop.com/adam/mhc/top/003997.htm (central sleep apnea)

(B12) Vancouver Sleep and Breathing Center - an excellent site that discusses apnea
and snoring along with their causes and treatments; includes discussion of merits
problems with the various treatments with a list of questions to ask; includes photos
showing actual apnea and snoring events
http://www.sleep-breathing.bc.ca/default.htm

(B13) Mayo Clinic's description of sleep apnea; includes sound files of apnea events.
http://www.mayohealth.org/mayo/9803/htm/apnea.htm

(B14) A.P.N.E.A. Net - Apnea Patient's News, Education, & Awareness Network
http://www.apneanet.org/

(B15) Dr. Rose's Peripheral Brain
http://faculty.washington.edu/momus/PB/obstruct.htm (OSA, hypopnea)
http://faculty.washington.edu/momus/PB/tableofc.htm (main page)

(B16) Guidelines for referral and management of snoring and sleep apnoea (UK)
http://www.equip.ac.uk/issue1/snoring.htm

(B17) National Institutes of Health; breathing disorders during sleep
http://www.equip.ac.uk/issue1/snoring.htm

(B18) Univ. of California, Davis; overview of apnea; includes descriptions and graphs
of apnea events
http://medocs.ucdavis.edu/IMD/420C/esylabus/apnea.htm

================================================================
----- C: Narcolepsy information

(C1) Narcolepsy Network:
http://www.websciences.org/narnet

(C2) Young Adults With Narcolepsy (YAWN)
http://www.yawn.org/

(C3) Narcolepsy InterNet
http://www.narcolepsy.org/

(C4) Narcolepsy InterNet Jumpstation (narcolepsy-related links from (C3))
http://www.narcolepsy.org/narc.links.html

(C5) Edie Lou's narcolepsy education page: a very comprehensive site about narcolepsy;
personal stories, links to other sites, definitions and diagnosis;
http://www.angelfire.com/pa/sleepprincess/

(C6) Dr. Koop's info about narcolepsy
http://www.drkoop.com/adam/mhc/top/000802.htm

(C7) Narcolepsy Association (UK) (UKAN); info about narcolepsy, including diagnosis,
treatment, and experiences; some UK specific info as well
http://www.narcolepsy.org.uk/

(C8) Narcolepsy Communication Center; links to chat, e-mail discussion, and web forums
http://narcolepsy.homepage.com/

(C9) Mayo Clinic; narcolepsy
http://www.mayohealth.org/mayo/9903/htm/narcolep.htm

(C10) Florida Narcolepsy Association; has pages that describe sleep process, narcolepsy
and its symptoms, and sleep apnea and its symptoms; has self-test for sleep disorders
http://www.geocities.com/HotSprings/8627/

(C11) Narcolepsy Action for Positive & Practical Solutions (NAPPS) (UK); an excellent web
site with sections on the impact and effects of narcolepsy, symptoms, treatment, disability
policy and narcolepsy, plus links to other info
http://www.napps.cwc.net/

================================================================
----- D: Sleep Related Movement Disorders: RLS, PLMD, others

(D1) Restless Legs Syndrome Foundation, Inc.:
http://www.rls.org

(D2) Southern California RLS Support Group web site
http://surf.to/rls (home page)
http://ourworld.compuserve.com/homepages/somno/rlsrx.htm (treatment)

(D3) Cyberspace RLS E-mail Support Group:
http://www.mlists.net/judson/RLSINTRO.html

(D4) Jodi's RLS site (Jodi suffers from RLS); links to other sites:
http://www.mlists.net/judson/rls.html

(D5) Newcastle Sleep Disorders Centre (Australia)
http://www.newcastle.edu.au/department/md/sleep/plmd.htm

(D6) Cyberspace RLS Email Support Group
http://www.mlists.net/judson/RLSINTRO.html

================================================================
----- E: Sleep paralysis (note: sleep paralysis is a common symptom
of narcolepsy, so you may wish to check "Section C: Narcolepsy" also)

(E1) Sleep paralysis and hallucinations
http://watarts.uwaterloo.ca/~acheyne/S_P.html#tabcon
http://watarts.uwaterloo.ca/~acheyne/S_P2.html

(E2) Trionic Research Institute - awareness of sleep paralysis
http://www.trionica.com/awarenes.htm

(E3) Presentation on Isolated Sleep Paralysis given in May, 1998
http://www.hip.atr.co.jp/~terril/SSE.Presentation.HTM

================================================================
----- F: Insomnia

(F1) Dr. Koop's Health Site Insomnia page
http://www.drkoop.com/centers/insomnia/a1.asp

(F2) Desperately Seeking Snoozin', the insomnia cure
http://www.insomniacure.com/Default.htm (home page)
http://www.insomniacure.com/sleep1_toc.htm (discussion forum)

================================================================
----- G: Displaced Sleep Phase Syndrome

(G1) Displaced sleep phase syndrome
http://www.geocities.com/HotSprings/1123/dsps.html

(G2) about.com - Delayed sleep phase syndrome; links
http://sleepdisorders.about.com/msubdsps.htm?pid=2750&cob=home

(G3) Stanford University - Delayed sleep phase syndrome;
http://www.stanford.edu/~dement/delayed.html#chron

================================================================
----- H: Night Terrors, Sleep-walking, Enuresis

(H1) A patient's view of night terrors; includes links to other sites
http://www2.micro-net.com/~dwr/index.html

(H2) National Enuresis Society
http://www.peds.umn.edu/Centers/NES/

(H3) Healthology.com's info on somnambulism (sleepwalking)
http://www.healthology.com/sleepdisorders/articles/walking.html

(H4) Dr. Koop's info on night terrors
http://www.drkoop.com/adam/mhc/top/000809.htm

================================================================
----- I: Night Eating Syndrome

I am indebted to DSPS77 for contributing this section and these items to the list.

(I1) Albert J. Stunkard's research at Univ. Penn. into "night eating syndrome"
http://www.med.upenn.edu/weight/ajsbio.html

(I2) Night Eating Syndrome (Anorexia Nervosa and Related Eating Disorders, Inc.)
http://www.anred.com/nes.html

(I3) Beyond the strictly physical reasons, night-eating is an unconscious way to
deal with stress...
http://www.wellmedia.com/news/news5397.html

(I4) Binge eating and night eating are widely overlapping but different
behaviors...
http://kathy-on-the-edge.com/eatdis/news/news05.htm

(I5) The night eating syndrome in the general population
http://www.med.upenn.edu/weight/publications.html

(I6) Sleep Eating Disorder or Nocturnal Sleep-Related Eating Disorder (NS-RED)
http://www.something-fishy.org/sed-nes.htm

================================================================

----- Some newsgroups on the internet

(A) Sleep disorders in general, but more about sleep apnea than others
alt.support.sleep-disorder

(B) Narcolepsy
alt.support.narcolepsy

(C) Seasonal Affective Disorder (SAD): seasonal (generally winter) depression
alt.support.depression.seasonal
soc.support.depression.seasonal

Stefani276

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Oct 14, 1999, 3:00:00 AM10/14/99

Cordelia;

Do not assume diagnosis is easier if you live in the US. I am 47, started with
symptoms when I was 16 and was not diagnosed until last year. I was too ashamed
to let anyone know what was going on with me.The things I did to stay awake
were unbeleivable. I never told any Dr. until last year when I was falling
asleep at traffic lights. Fortunately I started with a Dr. who was sympathetic
to me. However, she was looking for sleep apnea, as was I. Imagine our surprise
when it turned out to be narcolepsy.

Unless you have an eating disorder of the kind such as bulimia or anorexia, I
would be very careful about accepting that as related to narcolepsy. If you
happen to be a fat person, many Dr's will blame everything from dandruff to
hangnails on fat, or what they perceive to be an "eating disorder".

I am taking Provigil with excellent results also. I was started on an
ampehetamine but did not like it at all. Fortunately the Provigil became
available and my Dr. switched me immediately. I take 100 mg in the morning with
good results.

Best wishes to you. This is a funny disorder.

Stefanie

Stefa...@aol.com
"Give of yourself unto others and to life, for what you reap is beyond measure
or compare"
Me...

Michael Armstrong

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Oct 14, 1999, 3:00:00 AM10/14/99

Hi Cordelia,

Sorry to hear about your problems getting a positive diagnosis for
narcolepsy. Stick with it, gal! I am a narcoleptic and have had similar
problems to other repliers re: a long time getting diagnosed.
But things ARE looking up, narcolepsy is becomming more widely known - due
to some extent to the UK, American and European associations for
narcoleptics.

Someone quoted UKAN, I recommend you join. I was diagnosed in 1989 and am
continuing to learn more about my condition all the time. Make no mistake,
narcolepsy is no simple neurological disorder! I am a member of UKAN and
one of the major benefits is to be able to talk to fellow sufferers. If you
gain nothing else, you realise that you are no longer alone.

You do not say whereabouts in the UK you are; as with anything, there are
good doctors and bad doctors. I would think your next step is to see a
consultant who specialises in sleep disorders. From what you said, I would
think you could reasonably request this.

Best of luck,
Mick

cat

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Oct 22, 1999, 3:00:00 AM10/22/99

Hi Cordelia,
Mongo is absolutely right, there are not many GP's at all who will easily
recognise the symptoms of Narcolepsy. This indeed does seem to be an
'international affliction' and sadly, as you say, they often misdiagnose the
condition as 'stress', fob you off with the old 'you're depressed'
chestnut...
I too live in the UK and can well understand your frustration and annoyance
(understatement of the year...) at being constantly fobbed off with a
diagnosis that you KNOW is wrong.
On a practical level, the first thing you need to do is INSIST that you get
a referral to an appropriate sleep specialist (not just any neurologist, as
even they don't often see the symptoms as I well know-since this happened to
me....). From what I understand, the two most promising possibilities that
you could ask your GP about, are a referral to Dr John Shneerson at the
Sleep Disorders Unit, Papworth Hospital, Cambridge, or Dr Adrian Williams,
at 'The Sleep Disorders and Respiratory Clinic, St.Thomas's Hospital,
London.
Professor Parkes from King's College Hospital still researches, but
unfortunately for us UK Narcoleptics, has recently retired from actual
clinic work. (He is also a world-renowned authority in Narcolepsy as well as
being a lovely person and very insightful of narcolepsy).

Cordelia, I was in same situation as yourself (and to an extent, am still
not entirely 'home and clear' yet). It took three of the most
soul-destroying and difficult years of my life, not to mention humiliation,
to get the GP to take me seriously enough to even listen.... at a time that
you have least energy, you wonder how you will ever get through; but you
will, really. It's not easy getting this disorder diagnosed; the biggest
hurdle being the referral to a proper specialist who knows about sleep
disorders. It is your right under the patient's charter to ask for a second
opinion if you are not happy with a diagnosis/treatment given by a
specialist. It is also your right to be appropiately referred (the downside
to this bit of the charter is that it has an addendum; ...'where the GP
feels it is reasonable to do so'.
Insist, insist, insist....the angle I took in the end, was to say, Look, I
am not saying that I have Narcolepsy- I just want to either get it ruled out
as a possible cause of my sleep attacks, or diagnosed so I can be treated
and get on with my life... I said to the GP, I don't want to be here, you
don't want me here as no doubt you have numerous other patients waiting, so
the sooner you get me sorted out, the sooner we can part company and I'll
leave you in peace....'
It took 3 years, but yes, I was diagnosed just earlier this year; and have
JUST, finally got my referral to a specialist in Narcolepsy (John Shneerson
at Papworth). So am awaiting my appointment to see him. I am be treated with
dexedrine and prozac for cataplexy, but neither adequately control the
symptoms since they are very severe. I know that many people have had
success with the modafinil and some people find the dexedrine fine for them.
Until you are referred to a sleep doctor and have the appropriate tests, you
can't access any treatment. Everybody's experience is different and what may
suit one person, may not suit another and vice-versa.
As Mongo says, prozac is not the answer alone; you need a proper assessment
and for them to listen to what you're saying.
Try and arm yourself with as much information as possible, both about the
condition and about your rights as a patient (see if you can get hold of a
copy of the patient's charter', your GP surgery should have their own
charter which you should be able to get directly from them) Ask for an EEG
set of sleep tests, these are called 'multiple sleep latency tests' and also
for a blood test to determine whether or not you have the tissue-type HLA
(DR2). This can be determined by a simple blood test which will identify the
presence of this antigen (or not), but 95-98% of narcoleptics will test
positive for this, which provides a strong support for diagnosis of
narcolepsy.
My web-site as mongo says is pretty new and I'm trying to develop the
support resources in the UK for Narcolepsy. The project is called NAPPS
(Narcolepsy Action for Positive Practical Solutions). Now have a snail mail
address this is: NAPPS, PO BOX 113, PUDSEY, LS28 7XG, (UK). Feel free to
write if you need any more info or would like me to send you the info
publication I've put together. That extends to to anybody on the NG,
irrespective of where in the world you live.
Also, if you'd like to email, my addy is slee...@cwcom.net

Hang in there Cordelia and don't let them grind you down. Good Luck and
please let us know how you get on. You'll find a heck of a lot of good
people on this NG, also a lot of support and a wide range of knowledge.
Best of luck and Regards,
Love
Sleepycat
Mongo <emai...@stny.rr.com> wrote in message
news:Lg8N3.9169$46.2...@typhoon.nyroc.rr.com...

John

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Oct 25, 1999, 3:00:00 AM10/25/99

Hi Cat,

Just read your reply to Cordelia - sounds like you had a fine time getting a
diagnosis. The first GP I went to - in a large medical centre too! - refered
me to a sleep specialist so I was very lucky. I have recently started taking a
food supplement called Juice Plus (unfortunately only available via a pyramid
sales group - 'though not sur which as my mum put me onto them). It has reduced
my cataplexy symptoms by a huge degree which is great as it's allowed me to cut
my dose of Anafranil by two thirds (I now have one - instead of three - per
day, and my symptoms are still much less than they were. I would be interested
to know whether you know of anyone else who has tried it. I have to go now but
would appreciate any feedback that yo may have about this (or any other
narcolepsy tips). Hope all is well over there.

Cheers

john

gaf.vcf

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