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Introductions- Sleepyheads In Ontario!


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#21 Airhead

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Posted 08 November 2011 - 11:50 AM

My name is Steve live in Guelph, Ont. i'v been diagnosed for almost 8 years NAC/CAT. I'm also trying to find people for meet ups. It feels like we are alone. I have been off work for 2years from a 12 foot fall so far and my sleep Doc pulled my drivers Lic. i not mad but upset because it was my Independence. Now that I'm back on XYREM hopefully i can get my Drivers lic. back.

#22 carrieannburns

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Posted 07 September 2013 - 04:02 PM

Hello, i am Carrie-Ann  :)

 

I started the support group 

 

I hope you all will join! :D

 

i also started many other groups if you are interested message me! :D

 

I hope to have get-togethers, or meetings / meet-ups and events eventually in Ontario, and other for all of us "Sleepy Heads", hehehe.

 

Here is a little bit more about me!;

 

Carrie-Ann

Carrie-Ann is a 21 year old, Canadian, female. She is completely self-employed, Carrie-Ann takes part in many things... She did model, does photography, designs clothing & accessories, background acting, photo retouching, videography, video editing, blogging, youtub'ing, did do hair & makeup styling, wardrobe styling, among many other things! Carrie-Ann has been diagnosed Carrie-Ann lives on her own, with one roommate who is slowly beginning to understand her condition. Carrie-Ann mainly survives off of web design, and social assistance or photography at this time, but is interested in getting healthy enough to do better things. She had always dreamt of being in the Air Force Military, and or traveling the world as a sponsored volunteer, while taking pictures for magazines such as the National Geographic... Her health has made these dreams less, possible, or more so impossible... So she settles, for what she is able to do with her, Narcolepsy, without Cataplexy, though she does experience, though very rarely, hours or a day of paralysation... The doctors do not think it is Cataplexy, but they do not know what it is, they have said possibly a muscle disease and are currently undergoing testing. She loves art, photography, film, and her other dreams that are more possible now to reach than her old ones, with her Narcolepsy, include; Directing (acting and horror movies), and being an Advertising Agent. She has not been able to finish high school, and really wishes to go onto College as soon as she can focus well enough to process information she is trying to learn while doing her studies... She has been struggling a lot with academics, and is currently trying to figure out why her skills are decreasing... Carrie-Ann has started this group, along with her, Canadian's with Narcolepsy group, which currently holds 52 members - https://www.facebook...olepsy.network/, and her Narcolepsy Gamers group which currently holds 81 members - https://www.facebook...y.Gamers.Group/ ... She also was contacted by Wake Up Narcolepsy, the Toronto/Canadian area, of the Non-Profit Organization, to take part in helping raise awareness, and her and her group helping out with Fundraisers, for research for a cure for Narcolepsy... Currently they are brainstorming ways on how they can all work as a team, and work together. Carrie-Ann also suffers from General Anxiety Disorder & Physical Depression... Though she has learn to deal with it in the best way she can and manage it well enough to not let it affect her life much anymore except for the uncontrollable, breathing difficulties along with anxiety. Carrie-Ann recently quit modeling which she has done from the age of 14-16 to 21 years old... This was causing a lot of depression and stress in her life, and since she has quit she feels a lot better!! Keeping up with these groups, and also looking into being an Activist and Narcolepsy Advocate makes her world brighter and brings hope. view all of her links at... http://itsmyurls.com/carrieannburns

 

 

(Btw if any of you are wondering why i am speaking in third person (i swear i am not full of myself! :P , i copied and pasted this from a group where i had posted an intro for a Narcolepsy support group)

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#23 Jmac05

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Posted 10 December 2013 - 09:07 PM

Hi I'm Jill, I am turning 30 and was diagnosed with Narcolepsy - specifically Hypersomnia (Excessive Daytime Sleepiness) at the age of 21; and was living with symptoms (undiagnosed) for approximately 4 years before that. Up until recently I was taking Modifinil (Alertec); then was told by my pharmacist when I went for a refill that the medication was on backorder and they were not sure when it they would get more. My Sleep Doctor put me immediately on Ritalin and have been on that for about a month now.

 

I have read some posts in regards to driving - Because my Narcolepsy is completely controlled by medication I am able to drive - more interesting - about 2 years I obtained my F class (ability to drive a 22 Passenger bus). Part of the process was doing a physical in which I had to disclose that I had Narcolepsy. The application had to go to the Medical Review Board of the Ministry of Transportation. After about 3 months and a note faxed by doctor the Medical Review Board allowed me to continue with the licensing process.

 

I would say that in regards to living with Narcolepsy, I have been very lucky - I have a full-time job as a Youth Worker and am able to drive. I do however, remember exactly what it was it like to live with undiagnosed Narcolepsy.

 

If anyone ever has any questions, feel free to contact me - I would happy to try my best to answer them for you.



#24 carrieannburns

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Posted 11 December 2013 - 07:20 AM

Hi I'm Jill, I am turning 30 and was diagnosed with Narcolepsy - specifically Hypersomnia (Excessive Daytime Sleepiness) at the age of 21; and was living with symptoms (undiagnosed) for approximately 4 years before that. Up until recently I was taking Modifinil (Alertec); then was told by my pharmacist when I went for a refill that the medication was on backorder and they were not sure when it they would get more. My Sleep Doctor put me immediately on Ritalin and have been on that for about a month now.

 

I have read some posts in regards to driving - Because my Narcolepsy is completely controlled by medication I am able to drive - more interesting - about 2 years I obtained my F class (ability to drive a 22 Passenger bus). Part of the process was doing a physical in which I had to disclose that I had Narcolepsy. The application had to go to the Medical Review Board of the Ministry of Transportation. After about 3 months and a note faxed by doctor the Medical Review Board allowed me to continue with the licensing process.

 

I would say that in regards to living with Narcolepsy, I have been very lucky - I have a full-time job as a Youth Worker and am able to drive. I do however, remember exactly what it was it like to live with undiagnosed Narcolepsy.

 

If anyone ever has any questions, feel free to contact me - I would happy to try my best to answer them for you.

Jmac :)

 

Yes the Modafinil and non-generic version of it have been on and off backorder since August... it is very difficult to deal with, and usually needs to be ordered for 2-3 months per month incase of a back order (which can actually be quite challenging to do sometimes because pharmacies dislike giving out that many in advance...) And for those who take Modafinil you can get the Non-Generic version under the same medication coverage if that is the issue... But if you are having troubles with getting the non-generic and modafinil then yes another medication would need to be taken just like you have. Sorry to hear you had to switch and i hope it is working out for you. I know i tried Ritalin and it did not work for me. 

 

I am currently off meds as of now though, for other reasons ontop of the backorder, (because of bad side-effects after taking them for a near 4 years)... 

 

 

Are you in our Canadian group? if not you should join! :D

https://www.facebook...olepsy.network/



#25 Airhead

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Posted 11 December 2013 - 08:09 AM

Hello my name is Steve. I live in Guelph also I was diagnosed in my early 30's I'm now 40 I would love to meet up with others too. I'm strong believer in peer support.Hopefully get to chat with some of you soon.

#26 Jmac05

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Posted 11 December 2013 - 09:44 AM

Jmac :)

 

Yes the Modafinil and non-generic version of it have been on and off backorder since August... it is very difficult to deal with, and usually needs to be ordered for 2-3 months per month incase of a back order (which can actually be quite challenging to do sometimes because pharmacies dislike giving out that many in advance...) And for those who take Modafinil you can get the Non-Generic version under the same medication coverage if that is the issue... But if you are having troubles with getting the non-generic and modafinil then yes another medication would need to be taken just like you have. Sorry to hear you had to switch and i hope it is working out for you. I know i tried Ritalin and it did not work for me. 

 

I am currently off meds as of now though, for other reasons ontop of the backorder, (because of bad side-effects after taking them for a near 4 years)... 

 

 

Are you in our Canadian group? if not you should join! :D

https://www.facebook...olepsy.network/

I am not a member - but will look into it. I have been really lucky in regards to medication - the first one was Modafinil and it worked - when it went on back order my sleep doctor said to try Ritalin - I was off work for a week for my body to transition and I can honestly say I has my doubts at first - my behaviour was definitely altered. But it worked out, the only issue im having is loss of appetite - and understand that some people would 'love' to have that side effect; but it just makes me feel sick when I do eat until the medication wears off later in the evening. 

 

Thanks for responding - maybe i'll see you in the Canadian group on Facebook.



#27 ssnow

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Posted 19 December 2013 - 07:38 AM

I am Sarah.  I am 36.  I live in Kitchener.  I didn't believe my narcolepsy diagnosis at first and have not tried Modafinil or Ritalin since my early days as a "narcoleptic" many years ago when Modafinil made me extremely dizzy and Ritalin caused headaches.  I have been advised by my pharmacist that there are new versions of Ritalin and I knew myself that the Modafinil has been altered as I was part of the drug study.  During that time I either had the placebo or it simply did nothing for me.  Even the doctor is not allowed to know, so it didn't really help me at all.  The study was so intense to my inability to handle a schedule or extra activities in that schedule that I actually became quite anxious and stressed out when it was sleep study time.   I quit despite the free meds and paycheck.

 

Employment led me to a corporate DR who seemed to understand my complaints and sent me to Toronto.  I managed a regular sleep study 2011 which gave me my official diagnosis and I then vowed never to do it again... I also lost my job as a result of the stress induced illnesses and I was just too bloody exhausted to fight it and went home to sleep even more.  With the severity of it all, I was granted ODSP.

 

Sudden changes in my ability to wake (having numbness and paralysis, moreso if I "dream"... quotes as its been so extreme I don't know WHAT it is anymore) have led me to request yet another study just so that I can get a doctor who believes me... Ya, I have asked for another sleep study.  I am DESPERATE.  My GP asks me every appointment, "Are you SURE you're not just depressed??" 

 

Sure I am.  NOW.  But there is a REASON for my depression.  I am EXHAUSTED without reason, no one believes me, I am portrayed as a lazy mental case. I don't feel like I am living.  I have withdrawn from the world.  I feel like I am dying.

 

I am afraid.



#28 Hank

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Posted 19 December 2013 - 11:46 AM

I completely get it.

 

Sleep and depression are intertwined.

 

As PWN, our base line is functionally sleep deprived. It sets off a viscous cycle so living a balanced and drama free life is very important.

 

Stress makes our symptoms worse. The worse our symptoms are, the harder it becomes to manage stress. So, we spin off into a downward spiral of stress and exhaustion that depresses our entire system. They feed off one another and result in misery.

 

But the spiral can work the other way around also. As stress reduces, symptoms become more manageable and the misery begins to lift.

 

The deeper into the downward spiral, the harder it becomes to imagine anything being ok again- or remembering that ok even exists. It becomes like living in the bottom of a well.

 

You have a lot of personal strengths, but you may not have the use of all of them to their full extent right now.

 

You have already managed more than most people and have done it successfully.



#29 ironhands

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Posted 24 December 2013 - 02:56 PM


 

Sure I am.  NOW.  But there is a REASON for my depression.  I am EXHAUSTED without reason, no one believes me, I am portrayed as a lazy mental case. I don't feel like I am living.  I have withdrawn from the world.  I feel like I am dying.

 

I am afraid.

Since you're dealing with something neurological, there will naturally by psychological complications.  I would strongly recommending a sleep doctor who specializes in neurology/psychiatry who will understand, and can treat BOTH parts of the illness, and can help deal with the additional problems associated with it.  There are many, you just need to find the right doctor.  Don't be afraid to speak to a psychiatrist directly, as there are many who also have a good understanding of sleep.

 

As for ritalin, It messed me up, I was more tired and angry when I was on it.  My sleep issues are entirely psychological now it seems, unless the stress of the testing skewed my results which is entirely possible. 

 

There are many people here who understand what you're going through, so please do not feel alone.

 

I thought there was a great sleep clinic in KI/WL, but I don't remember.

 

 

 

@Hank, are you in Canada?



#30 carrieannburns

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Posted 16 April 2014 - 10:29 AM

Hello everyone!! I just wanted to update you to say that We have a "Canadian's With Narcolepsy" group on facebook, for PWN (people with narcolepsy) or parents of those who are 16 or younger with Narcolepsy... 

And then we have a Canadian Supporters of People With Narcolepsy group for loved ones, friends and family members of pwn.

 

 

Please join them here!

 

Canadian's With Narcolepsy (121 members)

https://www.facebook...olepsy.network/

 

 

Canadian Supporters Of People With Narcolepsy (39 members)

https://www.facebook...82948355297773/

 

 

WE HAVE near MONTHLY meetings across Canada!!! Especially in Ontario, if you are interested in them please join our group on facebook for event invites, and information and other resources ect.

 

 

Here are pictures from some of the meet ups we have already had since we started having them in 2014.

 

Our first Meet Up in Hamilton, Ontario.

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(all but one in the above photo are PWN - People With Narcolepsy) and as shown it shows where everyone is from.

 

 

From our second meet in Oshawa, Ontario! 

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From our Third Meet in Alberta!

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From our Forth Meet in Montreal!!

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Please come and join us! :)

 

 

 

Feel free to add me as a friend on fb, or PM me if you cannot saying you are a person with Narcolepsy and would like me to add you!

https://www.facebook...rrieAnn.S.Burns