Jump to content


Photo

Introductions- Sleepyheads In Ontario!


  • Please log in to reply
29 replies to this topic

#1 eww

eww

    Member

  • Members
  • 169 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:At the moment... mostly sleeping. And then my animals and university.

Posted 16 March 2010 - 05:08 PM

I'm Erinn and I'm in Ontario!

Location wise, I'm in Guelph, which is about an hour/hour-and-a-half West of Toronto, North of Burlington/Hamilton and East of Kitchener-Waterloo. How's that for being nicely triangulated?

Anyway, I figure now that we've got our very own Support section, some introductions might be in order. Plus, if anyone lives close by, I'd love to meet up. Or, more likely, fondly harbour the intention of meeting up at some vague point in the future. B) I'm well aware of my quirky habits.

So I'm a female university student in my mid20's going back to school to get my (slightly overdue) degree.

I must sign off now (gotta catch a nap before my next class) but I hope to hear from others in the vicinity sooner... or later.

#2 BlueRenee

BlueRenee

    Member

  • Members
  • 2 posts
  • Gender:Female
  • Location:Ontario, Canada
  • Interests:Sleeping= <3
    Music (AFI is my fav. band), art, drawing, reading, makeup, pretty things (that sounds stupid, but I mean, I like pretty art, flowers, scenery, fancy desserts, makeup etc.)

Posted 10 May 2010 - 03:29 PM

Hey Erinn (you wrote it with 2 n's so I'm hoping you meant to..), I'm in Ontario too!

I moved out to an apartment in Etobicoke with friends last year, but my house is in Mono Mills (surrounded by Orangeville, Caledon, and Shelburne ....if you know where any of these are)

I'm a female college student, turning twenty in July (whoop!) I'm going to school for makeup art, which I adore, but I dislike occasionally falling asleep in class (even on meds!!).

So.. yeah. Hi. ...It's good to know I'm not alone Posted Image

I look forward to hearing back from you some time (and from others.... there's got to be more.. maybe they just haven't found this website yet..)!

#3 Guest_spencer hall_*

Guest_spencer hall_*
  • Guests

Posted 30 June 2010 - 04:55 PM

Hey Erinn (you wrote it with 2 n's so I'm hoping you meant to..), I'm in Ontario too!

I moved out to an apartment in Etobicoke with friends last year, but my house is in Mono Mills (surrounded by Orangeville, Caledon, and Shelburne ....if you know where any of these are)

I'm a female college student, turning twenty in July (whoop!) I'm going to school for makeup art, which I adore, but I dislike occasionally falling asleep in class (even on meds!!).

So.. yeah. Hi. ...It's good to know I'm not alone Posted Image

I look forward to hearing back from you some time (and from others.... there's got to be more.. maybe they just haven't found this website yet..)!



#4 Guest_spencer wall_*

Guest_spencer wall_*
  • Guests

Posted 30 June 2010 - 05:13 PM

Hi folks
I am living in Northern Ontario..Narcolepsy is one of many chronic diseases that require medication.As you know one falls asleep at any time and at variable periods.I work in a manufacturing plant and safety is extremely important to me.....but....but...but...I am at risk working around motors..equipment..noise..heat as I may fall asleep! I need to drive my car to get to work so I am a danger on the highways.I dont know what to do!!!Even as I write this my body is weak and wants to sleep.Hopefully this forum will be utilized to the benefit of all of us.I need to go...very tired

#5 Sleepy_Dancer

Sleepy_Dancer

    Member

  • Members
  • 1 posts
  • Gender:Female
  • Location:Toronto
  • Interests:Photography. Dancing. BMX. Writing. Dreaming. Walking. Travel. Surfing. Anything to keep me alert!

Posted 26 August 2010 - 10:00 AM

I only have a minute, but wanted to quickly introduce myself.

I'm living in Toronto, am 30 years old and was diagnosed 4 years ago.
I've been on Alertec and am now on Ritalin.
I'm open to discussing any narcolepsy related topics with people. I'm very open about it.

I am fortunate enough to have a job where I can go outside for walks when necessary as I find this is a key factor in staying alert and functionable at work. Though, I have a pretty amazing job with a lot of supportive people.

I hope to converse more with everyone later!

Gotta run.

~A

#6 Guest_Sarah_*

Guest_Sarah_*
  • Guests

Posted 02 September 2010 - 10:24 PM

Hello,

My name is Sarah and I'm from Calgary Alberta, Im 17 and was diagnosed 2 years ago with Narcolepsy. I would say i had a pretty tough time with school when we just figured i was lazy and not sleeping enough, but now take ridilin and feel as normal as it gets! Im always interested in what others take for medications, and what others do to stay awake!
I nap once a day at school, in between classes and usually nap before work. I never take on more than a 6 or 7 hour shift just because i worry of falling asleep. If anyone wants to chat more about narcolepsy feel free to email me and such. What do you guys do about driving? And do you know the laws against not claiming your narcolepsy? thanks.
Sarah
s.bowlyou@hotmail.com

#7 dreamland

dreamland

    Member

  • Members
  • 3 posts
  • Gender:Female
  • Location:Ottawa
  • Interests:Reading, exercise, gardening, grandchildren and life

Posted 28 September 2010 - 09:00 PM

Hello to all Sleepy Canucks

This is my first day as a member. I was diagnosed with Narcolepsy and Sleep Paralysis 12+ years ago. After all these years, I still feel as though most people (including family) have a difficult time believing how this condition affects my day to day living. When I describe my dreams and episodes of sleep paralysis, they look at me as though I am from another planet. I am always doing research on this topic since I need to keep my doctor educated as well. I read lately that Narcolepsy is considered an autoimmune condition?
Well I am happy to have a Canadian group. By the way, I live in Ottawa, Ontario.

Den

#8 Dirtis

Dirtis

    Member

  • Members
  • 2 posts

Posted 28 November 2010 - 09:52 AM

24 y/o living in barrie, Ontario...was diagnosed 3 years ago after driving my car into the opposite ditch on my way to work one morning...needless to say I dont drive now, after the accident they suspended my liscense and I have been on modafinil (Allertec) since. I have been approved for the exceptional access program but they wont cover the medication due to abuse in the states? Can anyone confirm this for me because I find it almost laughable.
Also, to you students out there...I envy your determination to actually follow through with post secondary education. Ever since my accident I have just been working random jobs here and there (not much certainty in this economy) and would have probably gone mad by now if it wasnt for the band I play with. Its hard to muster up the motivation and inspiration to get things done when the people around you dont take you serious. I was considering applying for ODSP but am skeptical due to the experience with Trillium. Anyone know if they approve people with narcolepsy under ODSP?

Curtis

#9 Guest_Mark_*

Guest_Mark_*
  • Guests

Posted 01 December 2010 - 10:20 PM

Hi,
I'm Mark. After a bad couple of months and more recent weeks of feeling tired and needing to sleep and falling asleep uncontrolably all the time, I felt I needed to do something about it. I called and made an appointment with my doctor and went on the web to see what would come up if I searched about being tired. Norcolepsy came up. After reading on some of the web sites, it has come to my attention that I have really been suffering from this condition for many years. I always thought that being tired most of the time was normal for me. I never linked it to any type of condition.

I live just north of Barrie. I'm wondering what steps I should expect my doctor to take for me to really be diagnosed and where would I might have to go? What tests should I request to be done? Can they take your drivers license if you have this conditon even though you haven't had any accidents?

It would be nice to have some replies before I see the doc next week.

Thank you,
Mark

#10 Guest_Mark_*

Guest_Mark_*
  • Guests

Posted 01 December 2010 - 10:27 PM

24 y/o living in barrie, Ontario...was diagnosed 3 years ago after driving my car into the opposite ditch on my way to work one morning...needless to say I dont drive now, after the accident they suspended my liscense and I have been on modafinil (Allertec) since. I have been approved for the exceptional access program but they wont cover the medication due to abuse in the states? Can anyone confirm this for me because I find it almost laughable.
Also, to you students out there...I envy your determination to actually follow through with post secondary education. Ever since my accident I have just been working random jobs here and there (not much certainty in this economy) and would have probably gone mad by now if it wasnt for the band I play with. Its hard to muster up the motivation and inspiration to get things done when the people around you dont take you serious. I was considering applying for ODSP but am skeptical due to the experience with Trillium. Anyone know if they approve people with narcolepsy under ODSP?

Curtis


Hi Crutis,

I'm just wondering what is the "exceptional access program", "ODSP" and Trillium??

Where or how did you get diagnosed in Barrie? My doctor is at the Barrie Comunity Health center. Have you dealt with anyone there?

Mark.

#11 Guest_Jon_*

Guest_Jon_*
  • Guests

Posted 04 December 2010 - 10:18 AM

Hi,
I'm Mark. After a bad couple of months and more recent weeks of feeling tired and needing to sleep and falling asleep uncontrolably all the time, I felt I needed to do something about it. I called and made an appointment with my doctor and went on the web to see what would come up if I searched about being tired. Norcolepsy came up. After reading on some of the web sites, it has come to my attention that I have really been suffering from this condition for many years. I always thought that being tired most of the time was normal for me. I never linked it to any type of condition.

I live just north of Barrie. I'm wondering what steps I should expect my doctor to take for me to really be diagnosed and where would I might have to go? What tests should I request to be done? Can they take your drivers license if you have this conditon even though you haven't had any accidents?

It would be nice to have some replies before I see the doc next week.

Thank you,
Mark



#12 Guest_Jon_*

Guest_Jon_*
  • Guests

Posted 04 December 2010 - 10:54 AM

Hi Mark,

I live in Etobicoke and have been experiencing excessive tiredness for about 2 years now. I am able to fight the sleep, but I had a hard time concentrating and having enough energy to do anything, eventually my home, work, and school work/life were suffering.

I spoke to my doctor about a year ago with regards to feeling sleepy all the time here is what happened for me,

1) doctor asked me about feeling depressed (a common effect of depression) I didn't feel depressed, just tired

2) full set of blood and urine tests to check thyroid, anemia (low iron) and other conditions that can cause sleepiness. (tests all came back normal

3) initial sleep study at a sleep lab (overnight study to determine sleep patterns and stages of sleep being entered, 7pm-7am) you will also complete a standard "sleepiness questionnaire" to determine your level of sleepiness. you will also need to keep a sleep log for 2 weeks prior to the sleep study to track amount/quality of sleep, mood, energy levels, exercise levels, alcohol consumption, etc. The sleep study took quite a while to get an appointment, but once you've been referred to the sleep clinic you can request to be contacted in case of a cancellation, but make sure to have started your sleep log in case this occurs.

4)follow up with sleep specialist once the sleep study results were back (about 4 weeks) The specialist asked a lot of questions, they will likely ask you about strange and vivid dreams, previous head trauma, being paralyzed upon waking or falling asleep-temporarily, partial paralysis or loss of strength in situations where your emotions are present(laughing,crying,etc.)(my face muscles become very stiff when I get emotional, but more serious paralysis is common) The specialist then scheduled me for another overnight sleep study followed by a sleep latency test (for the following day). I was also told that I get too much REM sleep, more than a normal person's range anyway.

5)Sleep study #2 and next day sleep latency test were completed. the overnight sleep study was identical to the first one and used to confirm your quality of sleep as a benchmark for the latency test. The sleep latency test consisted of (5) 20-minute naps every 2 hours beginning 2 hours after waking up. after 20 minutes they get you up regardless of if you are sleeping or not.

6)follow up #2 with sleep specialist, to go over the results. For my situation, I was confirmed to have a good amount/quality of sleep the night before (benchmark to ensure enough sleep prior to the sleep latency test). of the 5 naps, I fell asleep every time with an average of just around 10 minutes (which is the borderline number that they look for. The most interesting thing was that I entered REM sleep 3 of the 5 naps which was a big sign of something going on. you shouldn't hit REM sleep until 70-80 minutes into your sleep cycle, this also accounts for the increased amount of REM sleep confirmed by the overnight studies.

The sleep specialist has not officially labeled it Narcolepsy, but I am being treated for it, I think he just wants to make sure things are similar on my follow up (after 6 months).

I was put on medication for a week and then went back for a medication follow up. I was good for about a month, then the medication didn't seem to be as effective so I made another appointment. I was prescribed another medication to try, I did this for 2 weeks and didn't have a good reaction to the drug, so I was instructed to go back to the first medication. So far, the first medication (dexadrine) seems to be working alright, I just have to make sure to get lots of rest and nap when possible.

As you can see, this process is extremely long, but it's worth it to figure out what is really going on. the tests done will help to diagnose the problem, I wouldn't go in to your doctor telling them you have Narcolepsy, because from what I've read, the drug seekers seem to be out for these types of drugs and it probably won't look to good if that is your doctors perception. If your issue is genuine (and I'm sure it is) hang in there and make sure you get all of the necessary tests done.

Hope this info helps, feel free to post back with any questions.

Take care sleepyheads!

Jon

#13 Guest_Mark_*

Guest_Mark_*
  • Guests

Posted 08 December 2010 - 06:36 AM

Hi Jon,

Thank you for your reply. I see the doctor tomorrow. Not sure what to say to her. I think you are right, I shouldn't say anything to her about narcolepsy.

Good info.

Thank you,
Mark

#14 Guest_Virginia_*

Guest_Virginia_*
  • Guests

Posted 11 January 2011 - 10:56 AM

24 y/o living in barrie, Ontario...was diagnosed 3 years ago after driving my car into the opposite ditch on my way to work one morning...needless to say I dont drive now, after the accident they suspended my liscense and I have been on modafinil (Allertec) since. I have been approved for the exceptional access program but they wont cover the medication due to abuse in the states? Can anyone confirm this for me because I find it almost laughable.
Also, to you students out there...I envy your determination to actually follow through with post secondary education. Ever since my accident I have just been working random jobs here and there (not much certainty in this economy) and would have probably gone mad by now if it wasnt for the band I play with. Its hard to muster up the motivation and inspiration to get things done when the people around you dont take you serious. I was considering applying for ODSP but am skeptical due to the experience with Trillium. Anyone know if they approve people with narcolepsy under ODSP?

Curtis



#15 Guest_Melody_*

Guest_Melody_*
  • Guests

Posted 17 January 2011 - 11:20 AM

Hello,

My name is Sarah and I'm from Calgary Alberta, Im 17 and was diagnosed 2 years ago with Narcolepsy. I would say i had a pretty tough time with school when we just figured i was lazy and not sleeping enough, but now take ridilin and feel as normal as it gets! Im always interested in what others take for medications, and what others do to stay awake!
I nap once a day at school, in between classes and usually nap before work. I never take on more than a 6 or 7 hour shift just because i worry of falling asleep. If anyone wants to chat more about narcolepsy feel free to email me and such. What do you guys do about driving? And do you know the laws against not claiming your narcolepsy? thanks.
Sarah
s.bowlyou@hotmail.com



#16 Guest_Melody_*

Guest_Melody_*
  • Guests

Posted 17 January 2011 - 11:49 AM

Hi Sarah, my 16 year old son was diagnosed with Narcolespy late this past fall. He was always a great sleeper but it progressively got worse in high school. He would take 2 - 3 hour naps after school and still go to bed and fall right asleep. He never got excited about things and was a very calm person with no mood swings, but that all started to change in grade 9, he started getting snarky in his replies with me which was just not his character. When I asked him why he was talking to me like that, his reply was " i am tired of always being tired". He would sleep the entire weekends, he would get up at 10:00 have breakfast lay down on the sofa take another 2 hour nap get up have lunch lay down again and sleep a couple more hours then he would get up have supper and somtimes take another nap, wake up get a snack and go to bed, he was sleeping up to 18 hours a day on the weekend. I took him to the doctor and they said he was just a teenager and they do that, after telling them i was sure there was something more to it, they agreed to do blood tests, of course they came back perfect, nothing wrong don't worry mom they told me. He was an exceptional student and very athletic with lots of friends so I let it go until late spring when he was getting grumpy again. By this time he was telling me he was sure that he was falling asleep in class and he was even sure he was doing it with his eyes open. I talked to the teachers and they said yes he would nod off in class but when they called on him, he could always answer the questions, weird I know but i wasn't letting it go this time. I told my son i would make an appt but he needed to tell the doctor that he really felt something was wrong and wanted to be tested for sleep apnea. The doctor finally agreed, we didn't see the specialist until September and he felt right away that he may be borderline narcoleptic or have some other form of sleep disorder. Finally i felt like we were getting somewhere. The tests took place in October and we went back for results in November. Sure enough he had narcolepsy but more severe than the doctor anticipated. He only took 6 1/2 minutes to fall asleep for the naps and went into rem sleep anywhere from 5 minutes to 12 minutes at the most. They figured he had to be falling asleep at school at least 5 - 10 times a day. We were very lucky, the doctor put him on Modafinil and it only took a few weeks to get the the right time of the day to take it. It has been a wonderful change for all of us. He finds it very difficult to get up in the morning but now only naps maybe once a month out of boredom. He has not had any reactions to the medication and from what we have been told, it does not have an addiction pattern to it.

When he was first diagnosed, he only had his beginner's driver license for a couple of weeks. The doctor said that it was a reportable medical condition to the Motor Vehicle Department. He asked him not to drive until his follow up appt, which would determine if the medication worked. We agreed and when we went back he said that he would report Narcolepsy with CONTROL, this means that they have to treat him just like a regular driver and he would get to keep his license. If they can't get control with medication then he said that they have to report Narcolepsy WITHOUT Control and they take your license away from you.

#17 canadian

canadian

    Member

  • Members
  • 16 posts

Posted 31 January 2011 - 08:48 PM

Hi Sarah, my 16 year old son was diagnosed with Narcolespy late this past fall. He was always a great sleeper but it progressively got worse in high school. He would take 2 - 3 hour naps after school and still go to bed and fall right asleep. He never got excited about things and was a very calm person with no mood swings, but that all started to change in grade 9, he started getting snarky in his replies with me which was just not his character. When I asked him why he was talking to me like that, his reply was " i am tired of always being tired". He would sleep the entire weekends, he would get up at 10:00 have breakfast lay down on the sofa take another 2 hour nap get up have lunch lay down again and sleep a couple more hours then he would get up have supper and somtimes take another nap, wake up get a snack and go to bed, he was sleeping up to 18 hours a day on the weekend.
When he was first diagnosed, he only had his beginner's driver license for a couple of weeks. The doctor said that it was a reportable medical condition to the Motor Vehicle Department. He asked him not to drive until his follow up appt, which would determine if the medication worked. We agreed and when we went back he said that he would report Narcolepsy with CONTROL, this means that they have to treat him just like a regular driver and he would get to keep his license. If they can't get control with medication then he said that they have to report Narcolepsy WITHOUT Control and they take your license away from you.

Wow, Melody! Sounds like my son!! My Son was diagnosed at 12 and is now 14. It has been a challenging 2 years and I think I know what you are going through.
In Ontario, once narcolepy is reported to the Ministry, a medical report would need to be submitted with reference to a successful Wakeful Test as well as a reference to a period(months) of stability. Cataplexy also seems to be an important factor in the Ministry's decision for (re-)approving a Driver's License.

#18 Guest_Melody From Ontario_*

Guest_Melody From Ontario_*
  • Guests

Posted 02 March 2011 - 10:46 AM

Wow, Melody! Sounds like my son!! My Son was diagnosed at 12 and is now 14. It has been a challenging 2 years and I think I know what you are going through.
In Ontario, once narcolepy is reported to the Ministry, a medical report would need to be submitted with reference to a successful Wakeful Test as well as a reference to a period(months) of stability. Cataplexy also seems to be an important factor in the Ministry's decision for (re-)approving a Driver's License.



#19 lashgirl

lashgirl

    Member

  • Members
  • 5 posts
  • Gender:Female
  • Location:Montreal, Quebec Canada
  • Interests:People, Performing Arts, University

Posted 09 March 2011 - 01:52 PM

Hi I’m Judy I am in my 40’s, divorced with 2 small kids (9 with ODD and Apnea & 6yrs with Autism) in La Belle Province. I was diagnosed in my early 20's, but have noticed that women have a harder time to deal with Narc as they get closer to menopause (yep).

My husband didn't understand Narcolepsy and left me when I developped Apnea. I work full-time, study part-time towards my Master's degree and enjoy (when I can) the company of family and friends. How, you ask? Remember that many Narc symptoms mirror some of those found in patients with ADHD. For example, I get note-takers for school and am looking into getting home help. I also found a doctor who keeps looking for the right meds and helped me to structure my life so that I can handle the day to day. You got to make lists of everything, get post-it notes and find a reliable housekeeper not housecleaner. A housecleaner just cleans, a housekeeper runs your house like their own).

I write everything down on checklist, got a smartphone and programmed it with alarms and notes for every task. Of course I also lose my carefully recorded notes but that’s just part of having Narc. And yes, I can drive because the laws in QC require the doctor to assess and authorize a licence. We do have a foundation here “Foundation Sommeil” but they operate in French and I am an Anglophone. They do, however provide lots of information and try to make everything available to me in English.

Also-weight gain. The part of the body that controls sleep also controls appetite. Make bread your frenemy. Eat it in strict moderation as Carbs can add to sleepiness. Some people also find that reducing caffeine helps. I personally love an expresso but hey, it's not for everyone.

Oh yeah, I'm on Xyrem-fully funded so I pay nothing and I sleep with a CPAP (how sexy is that, not). I have tried Ritalin (too nervous and speedy but slimming), Mondial (sp?) did nothing for me, Alertec (allergic) and Cylert (creatine levels flew through the roof). Xyrem is making me a bit aggressive and I seem to be developing OCD so I will be checking in with my Dr. tomorrow about this. Losing weight again though, I'm liking this part:yelling at my kids all the time-not so much.

Edited by lashgirl, 09 March 2011 - 02:35 PM.


#20 Airhead

Airhead

    Member

  • Members
  • 6 posts
  • Gender:Male
  • Location:Guelph, Ontario, Canada
  • Interests:Electronics, Meeting People

Posted 08 November 2011 - 11:18 AM

I'm Erinn and I'm in Ontario!

Location wise, I'm in Guelph, which is about an hour/hour-and-a-half West of Toronto, North of Burlington/Hamilton and East of Kitchener-Waterloo. How's that for being nicely triangulated?

Anyway, I figure now that we've got our very own Support section, some introductions might be in order. Plus, if anyone lives close by, I'd love to meet up. Or, more likely, fondly harbour the intention of meeting up at some vague point in the future. B) I'm well aware of my quirky habits.

So I'm a female university student in my mid20's going back to school to get my (slightly overdue) degree.

I must sign off now (gotta catch a nap before my next class) but I hope to hear from others in the vicinity sooner... or later.