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Canadian Support?

26 posts in this topic

Is it possible that we could get a support group section for Canadians? The Canadian health systems are different from the US or the UK and often need serious navigating. I'm not sure how many of us there are but I know there are a few Canucks here. I don't know if there are enough of us to make a whole section worthwhile though...

*giggles* The spellchecker objects to "Canucks". hehehe.

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Xyrem access in Ontario.

Anyone looking for help from the Ont. government to pay for the horrendous cost of Xyrem can forget it. Apparently sleep is overrated; either that or they'd just prefer to pay out long term disability instead!! I applied for "exceptional access program" and was refused not as an individual but was stated that they are choosing not to give support to anyone. Some private insurance companies are also now refusing to cover it. I have told them I can no longer afford to purchase it (costs roughly $20/night) and ceased reordering. They have asked for tax return and perhaps may subsidize; I'll wait and see. Would be interested in other stories!!!

I really like the idea of having a "Canada" section specifically with regard health care issues and government.

jjs

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Hello : )

I am new to the network and would also support a Canadian section if only for dealing with issues you mention related to the healthcare system here, access to medications and insurance coverage, not to mention disability issues etc.

Thanks!

2tired in BC

Xyrem access in Ontario.

Anyone looking for help from the Ont. government to pay for the horrendous cost of Xyrem can forget it. Apparently sleep is overrated; either that or they'd just prefer to pay out long term disability instead!! I applied for "exceptional access program" and was refused not as an individual but was stated that they are choosing not to give support to anyone. Some private insurance companies are also now refusing to cover it. I have told them I can no longer afford to purchase it (costs roughly $20/night) and ceased reordering. They have asked for tax return and perhaps may subsidize; I'll wait and see. Would be interested in other stories!!!

I really like the idea of having a "Canada" section specifically with regard health care issues and government.

jjs

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Hello everyone! I am 24 y/o living in Ontario and have been diagnosed with narcolepsy for about 3 years now. I have alos been approved for the Trillium Drum Benefits Program (exceptional access program) and have also been approved based on income, etc. but not covered because of the medication I am on (which happens to be Modafinil). This is ludacris to me, esspecially since I find it works, but not 100% of the time and sucks up 150$/month. So I have begun to take the steps towards ODSP but feel wrong for doing so because I dont feel like I deserve it. Needless to say, I cant drive and cataplex fairly often when not on the drug.

I was just wondering if anyone knows how to get help from our Ontario gov./heathcare system. They seem to be completely neglecting narcolepsy and the people whose lives it effects.

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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.

Hello everyone! I am 24 y/o living in Ontario and have been diagnosed with narcolepsy for about 3 years now. I have alos been approved for the Trillium Drum Benefits Program (exceptional access program) and have also been approved based on income, etc. but not covered because of the medication I am on (which happens to be Modafinil). This is ludacris to me, esspecially since I find it works, but not 100% of the time and sucks up 150$/month. So I have begun to take the steps towards ODSP but feel wrong for doing so because I dont feel like I deserve it. Needless to say, I cant drive and cataplex fairly often when not on the drug.

I was just wondering if anyone knows how to get help from our Ontario gov./heathcare system. They seem to be completely neglecting narcolepsy and the people whose lives it effects.

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

Hi Elaine! I was diagnosed in Vancouver and am still in the area.. I have yet to meet another person with N I hope to hear back from you!

=)

Liz

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

Hi Elaine - I was diagnosed in 1998 and am interested in meeting other narcoleptics - what part of Vancouver do you live in? Pam

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Hi Elaine - I was diagnosed in 1998 and am interested in meeting other narcoleptics - what part of Vancouver do you live in? Pam

East

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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.

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Xyrem access in Ontario.

Anyone looking for help from the Ont. government to pay for the horrendous cost of Xyrem can forget it. Apparently sleep is overrated; either that or they'd just prefer to pay out long term disability instead!! I applied for "exceptional access program" and was refused not as an individual but was stated that they are choosing not to give support to anyone. Some private insurance companies are also now refusing to cover it. I have told them I can no longer afford to purchase it (costs roughly $20/night) and ceased reordering. They have asked for tax return and perhaps may subsidize; I'll wait and see. Would be interested in other stories!!!

I really like the idea of having a "Canada" section specifically with regard health care issues and government.

jjs

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Hey everybody my name is Steve living in Guelph, On. I had trouble getting my XYREM as well I have something to help for you because I got it [email protected]

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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 not aware of this psychiatrist, but am curious who it might be? I think I might be looking to talk to someone new in the near future. I am in the Vancouver area. There is a Sleep Disorders clinic at the UBC Hospital that might be worth checking out. I was diagnosed there and saw a good specialist - I just failed to keep seeing her after missing a couple appointments during school and am regretting it now because I need to get re-referred and go through the motions again to see her again.

msg me and we can keep in touch.

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East

Hey have you Vancouverites met up yet? Havent been on the forums in a while. It's exciting to see others from the area. We should have a meeting! I am not currently in touch with anyone from the area with N.

:D

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Hey... I have just received a "diagnostic impression" of narcolepsy (REM on 2 naps on MSLT) but do not yet (or maybe never will) have cataplexy. Currently live in Northern BC and it seems there are little online resources for Canadians. I've viewed some narcolepsy forums which have been helpful however some information does not pertain (ie. I don't think Xyrem is available in Canada??).

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Hey... I have just received a "diagnostic impression" of narcolepsy (REM on 2 naps on MSLT) but do not yet (or maybe never will) have cataplexy. Currently live in Northern BC and it seems there are little online resources for Canadians. I've viewed some narcolepsy forums which have been helpful however some information does not pertain (ie. I don't think Xyrem is available in Canada??).

Hey!

I can never remember my username n stuff to sign on here .. damn brain... but I'm back n looking to chat with other canadians esp BC people so message me if you would be interested.

Cheers Liz

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I know you are out there Canucks. I don't bite eh?!

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Hi Elaine - I was diagnosed in 1998 and am interested in meeting other narcoleptics - what part of Vancouver do you live in? Pam

hi...sorry for delay...forgot password..other life events..

happy new year..

East..

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I am not aware of this psychiatrist, but am curious who it might be? I think I might be looking to talk to someone new in the near future. I am in the Vancouver area. There is a Sleep Disorders clinic at the UBC Hospital that might be worth checking out. I was diagnosed there and saw a good specialist - I just failed to keep seeing her after missing a couple appointments during school and am regretting it now because I need to get re-referred and go through the motions again to see her again.

msg me and we can keep in touch.

I go to the UBC Hospital.... they're wonderful there

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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.  

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

I visit Vancouver... like to connect?

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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.com/groups/canadian.narcolepsy.network/
  2. People With Narcolepsy in Niagara and Surrounding Area:https://www.facebook.com/groups/PWN.In.Niagara.And.Area/
  3. Narcolepsy Awareness In South Western Ontario:https://www.facebook.com/groups/284556971578939/
  4. Sleep Wake Disorders Association Of Toronto: https://www.facebook.com/groups/93388941079/
  5. Narcolepsy In Southwestern Ontario: https://www.facebook.com/groups/325073480929420/

 

 

 

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 

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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.

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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.com/groups/canadian.narcolepsy.network/

 

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

 

 

I am on Vancouver island.  Love to connect.  

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