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Support Group In Los Angeles? Anyone Interested


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#21 Guest_Nikki_*

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Posted 05 December 2011 - 01:43 AM

Hi, Redondo Beach here. I've been looking for a group for quite some time now so if anyone out there knows of anything please email me at redondoscorpion@yahoo.com Thanks :) Nikki

#22 Missy P

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Posted 05 December 2011 - 12:30 PM

Hi Guys,

I know how hard it is to find anyone else with Narolepsy and "really" understands. That being said.

I'd honored to speak to to you! I live in North Orange County.

Best Wishes,

Melissa

mpaige514@yahoo.com

:rolleyes:

#23 Rrrapture

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Posted 10 December 2011 - 08:00 PM

I just made a group called Narcolepsy LA on Meetup: http://www.meetup.com/Narcolepsy-LA/

I agree with some of the others that it could be a great way for us to plan get-togethers, and connect with other PWN.

To join the Narcolepsy LA Meetup, follow the link and answer 3 questions briefly. http://www.meetup.com/Narcolepsy-LA/

If you're new to Meetup, create a username you're comfortable with (it can be viewed publicly). Photos and intros are all optional; if you hate answering questions then answering with just a word or two is acceptable. The questions are there to filter out spam and help us get to know one another.

I have suggested a meetup next Saturday at 2pm at Pipers in Los Angeles. It's just a starting point, if other times/days work better for everyone, then please email them or post a comment in the Meetup page.

Any and all are welcome to be involved with organizing, promoting, and giving feedback. I paid for 6 months in advance (to host the meetup); we can discuss details like optional membership dues at another time. It was important to me to get it started.

Thanks folks. I can't wait to meet you!

Rrrapture

p.s. email or message me if you have any questions.

#24 sleepnow

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Posted 27 February 2012 - 12:54 AM

Are there no other LA people? Seems like all the N's are on the east coast.

#25 Guest_AYCV_*

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Posted 11 March 2012 - 11:59 PM

Are there no other LA people? Seems like all the N's are on the east coast.


I live in la. When is there another meeting?

#26 Guest_Melissa_*

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Posted 12 March 2012 - 03:57 PM

I live in la. When is there another meeting?


I live in North Orange County. I go to a small support group that mets every 3 months at St. Josheph's Hospital In Fullerton.
They are a wonderful people to have in my life. All with Narcolepsy are welcome to come. Dr. White leads the group. She is a
sleep disorder expert. You are welcome to email me for more information. I would like to know more about what you got going on to?
Great To Know Ya,
Melissa
mpaige514@yahoo.com

#27 Guest_AYCV_*

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Posted 13 March 2012 - 01:31 AM

I live in North Orange County. I go to a small support group that mets every 3 months at St. Josheph's Hospital In Fullerton.
They are a wonderful people to have in my life. All with Narcolepsy are welcome to come. Dr. White leads the group. She is a
sleep disorder expert. You are welcome to email me for more information. I would like to know more about what you got going on to?
Great To Know Ya,
Melissa
mpaige514@yahoo.com

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?

#28 Guest_Melissa_*

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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

#29 Guest_AYCV_*

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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

#30 Guest_AYCV_*

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Posted 17 March 2012 - 10:10 PM

Melissa when and where is there another meeting?
AYCV

#31 Guest_Melissa_*

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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

#32 Guest_Melissa_*

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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

#33 Guest_Docktor Dengler_*

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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!

#34 Guest_Melissa_*

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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!



#35 Guest_Melissa_*

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Posted 11 November 2012 - 04:48 PM

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

#36 9854

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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/



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