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Introductions- Sleepyheads In Ontario!

29 posts in this topic

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  I have withdrawn from the world.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.

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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.

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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?

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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.com/groups/canadian.narcolepsy.network/

 

 

Canadian Supporters Of People With Narcolepsy (39 members)

https://www.facebook.com/groups/1382948355297773/

 

 

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.com/CarrieAnn.S.Burns

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