Jump to content


Replying to Support Group In Los Angeles? Anyone Interested


Post Options

  or Cancel


Topic Summary

Posted 25 August 2015 - 10:48 AM

Because the LA area is large, especially when considering traffic congestion, I have found myself wishing there were a support group in Orange County even further south than Fullerton. Every 20 minutes makes a difference for me when it comes to driving, and I'm guessing that's true for most PWNs.

 

I decided to start a support group to work IN TANDEM with other area groups (Rachelle's LA group and Dr. White's Fullerton group). In other words, I will make efforts to schedule meetings on dates not already scheduled in LA or Fullerton. Also, I'm hoping that as the OC group grows, we can organize carpools to the LA/Fullerton meetings. I do WAY better driving in congested stop-and-go traffic if I have others to converse with in the vehicle!

 

Please join if you are within a comfortable distance of Fountain Valley/Huntington Beach. Depending on the location of the majority of the group's members, we can hold meetings further south in Irvine or further east in Orange, etc.

 

Information and dates for meetups is available on Meetup.com at  

 

http://www.meetup.co...olepsy-Support/

 

 

P.S. To set expectations, I am a very organized person BUT I'm a PWN with limited energy and financial distress (hence the option to chip in towards the fee to set up a group with Meetup.com). I'm just doing the best I can to make connections available and would definitely welcome any assistance and/or friendly suggestions.

 

Colleen  :)


9854

Posted 08 November 2013 - 04:17 PM

Hi, I see this is an old post but just wanted to update you on a N Meetup group started by a friend in your area. Here is the link:
http://www.meetup.com/Narcolepsy-LA/

Posted 11 November 2012 - 04:48 PM

What exactly are you asking for? Maybe I can Help. Reply: mpaige514@yahoo.com :)

Posted 11 November 2012 - 04:43 PM

Support whom? Groups are for leaders and followers. Forget about it. The only thing I want from you guys is cheap Provigil. It costs $50 per pill and it is the best treatment for Narcolepsy. Indian imitations help but nothing is as good as Provigil. It's like drugs for terminal cancer, blackmail!


Posted 10 November 2012 - 06:07 PM

Support whom? Groups are for leaders and followers. Forget about it. The only thing I want from you guys is cheap Provigil. It costs $50 per pill and it is the best treatment for Narcolepsy. Indian imitations help but nothing is as good as Provigil. It's like drugs for terminal cancer, blackmail!

Posted 20 March 2012 - 12:00 PM

Melissa when and where is there another meeting?
AYCV


Orange County Narcolepsy Support Group:
Saturdays, April 28, July 26, October 27 for 2012
10:00 to 12:00 AM
Erikson Building, 3rd Floor, Room I in Back.
St.Jude Medical Center
N. Harbor Blvd. At Bastenchury Ave.
Fullerton, CA 92835
Lead by: Dr Margaret White, PhD
Nationally Reconized Leader in Sleep Disorders
www.stjudemedicalcenter.org

Posted 20 March 2012 - 11:52 AM

I'll e-mail you tomorrow.
I tried Provigil but had an allergic reaction to it. As far as Xyrem, I'm scared of the black box warning.
AYCV


Yes, I was very scared to try Xyrem. But I handled to with care and study indepth first. But at the end of the day,
was desperate to try any thing.
Xyem turned out to be a wonder drug for me. It worked great with no side effects. It made a wonderful inprovement in me!
I am wide awake all day and have more functional hours a day with no narcolepit spells or any cataplexly. It was worth the risk!
Use it RESPONSIBALBY!
Sincerly,
Melissa P.
mpaige514@yahoo.com

Posted 17 March 2012 - 10:10 PM

Melissa when and where is there another meeting?
AYCV

Posted 14 March 2012 - 09:30 PM

It sounds alot like me. You must have a sleep studing done to confirm narcolepsy in any form. With confirmed diagnosis you only them quaifiy for the medications you need.
Like Nuvigil or maybe even Xyrem. You may contact me directly at mpaige514@yahoo.com. Hope to here from you soon. I've been in your shoes. Melissa


I'll e-mail you tomorrow.
I tried Provigil but had an allergic reaction to it. As far as Xyrem, I'm scared of the black box warning.
AYCV

Posted 13 March 2012 - 11:39 AM

I haven't been technically diagno sed with narcolepsy yet. I'm scheduled to do the overnight study but with the symptoms that I've explained to my neurologist she said it. sounded like narcolepsy. I've been on adderrall xr 30 in the am and 25 in the pm for almost 8 years. I have a mild form of it. I dont fall asleep right were I'm at. I'm sleepy and tired all the time. I feel. Foggy some days more thanb others were I can't think clearly and my concentration is bad. Some days I yawn a lot. I get the sleep paralysis depends it could be from 3 t
o 7 times a month. Sometimes if I nap in the weekend I get it. I dont drive
And its very hard to try to explain this thing I cannot control. Its. Very frustrating because even my partner and family don't believe m e. I sometimes feel down because of this. I wil be emailing you tomorrow. :-)
How bad do u have it?



It sounds alot like me. You must have a sleep studing done to confirm narcolepsy in any form. With confirmed diagnosis you only them quaifiy for the medications you need.
Like Nuvigil or maybe even Xyrem. You may contact me directly at mpaige514@yahoo.com. Hope to here from you soon. I've been in your shoes. Melissa

Review the complete topic (launches new window)