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#21 Rainbow

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Posted 11 June 2013 - 06:45 AM

Hello,
I am in Kamloops and know of 2 others in Clearwater with N....always happy to talk with others about NC....
My neurologist has suggested I see a specialist in Vancouver....a psychiatrist who specializes in sleep disorders and narcolepsy. Any of you Vancouverites know of this psychiatrist or other specialists that might be worth seeing? I'm not having a lot of success with the meds I've tried so far...
Thanks.

I am on Vancouver island.  Love to connect.  



#22 Rainbow

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Posted 11 June 2013 - 06:46 AM

Looking for anybody to relate to in Vancouver, BC...

I visit Vancouver... like to connect?



#23 carrieannburns

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Posted 07 September 2013 - 03:42 PM

Hello, to anyone who is seeking support in Canada, Ontario, or certain areas or regions for Sleep Disorders, and or Narcolepsy and other... 

 

Here are just a few groups you can find online on Facebook for support, and some of them even host meetings, or get-togethers, or events... 

 

 

  1. Canadian’s With Narcolepsy: https://www.facebook...olepsy.network/
  2. People With Narcolepsy in Niagara and Surrounding Area:https://www.facebook...agara.And.Area/
  3. Narcolepsy Awareness In South Western Ontario:https://www.facebook...84556971578939/
  4. Sleep Wake Disorders Association Of Toronto: https://www.facebook...ps/93388941079/
  5. Narcolepsy In Southwestern Ontario: https://www.facebook...25073480929420/

 

 

 

Also Wake Up Narcolepsy, has a Canadian branch located in Toronto region, and i am sure they would love for anyone to contact them with interest in helping in any way that they can even if it is brainstorming ideas for fundraisers, or giving a helping hand to any they host, as i know they do stuff at the Children's Hospital in Toronto.

 

I had started the Canadian's With Narcolepsy group, to help give one-another support, and show that we are not alone, although other countries like the USA may have more people known to suffer from Narcolepsy, we still do have a greater number than we think!

 

Thank you xo.   :D 



#24 carrieannburns

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Posted 07 September 2013 - 03:46 PM

Yes i also got coverage (it took two different Doctors, and three years (only due to horrible doctors previous to amazing current one)... It took me three years to get the EAP (Exceptional Access Form), for coverage too, it is where the Government actually pays directly for the medication and it is not any specific medical coverage, but for the drugs mentioned, on the list... It is sad because Modafinil i had experienced that too for many years, it has always been the only medication not covered by any drug plan, even welfare/assistance or trillium... 

 

But all you have to show is that that medication is needed (there isnt much to do other than sign it, or try alternative medications like Ritalin since it is covered under those programs, and is a significant amount cheaper!) <3 hope that helped!

 

 

 

I was approved for Exceptional Access to modafinil in 2009. My doctor was required to write a letter explaining why I was not tried on the standard narcolepsy meds (i.e. Ritalin or Dexedrine) first. He informed them that he felt the standard meds would exacerbate another pre-existing condition I had. That seemed to do the trick.



#25 carrieannburns

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Posted 07 September 2013 - 03:47 PM

I will be moving there eventually! :) I have friends who have Narcolepsy in that area and are in the group 

 

- Canadian’s With Narcolepsy: https://www.facebook...olepsy.network/

 

Incase you are willing to connect, or correspond with any of them!  :)

 

 

I am on Vancouver island.  Love to connect.