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Just Told I Had N + C. At Age 74. Thought This Happens When You Are Young?


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#1 sunset

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Posted 07 October 2012 - 11:58 AM

I was just told last week the results of my sleep lab stay. The day I napped every 2 hrs I went directly into REM in a few minutes of laying down. I have Narcolepsy with Cataplexy. The Dr. said I probably have had Narcolepsy for at least 20 or more years. Surely I would have had some symptoms? The Cataplexy just started slowly about 3 years ago with a slight tremor in the knees to now I am collapsing to the floor. If I talk or laugh while I am standing or walking I end up on the floor. I am fully awake and aware during the attacks. Thats what got me into sleep lab. Thank goodness I know what is wrong with me now but when you look "old" the Dr's won't listen to you when you try to describe your symptoms. I was almost paralized because a Dr. wouldn't listen to me describe the strange feeling in my neck. Finally when I started collapsing with Cataplexy a MRI was ordered and they found I had cervical stenosis with bone spurs touching my spinal cord. I would have been paralized soon if I didn't have the surgery. I had the surgery but that delayed getting the reason why I was collapsing.

Oh well, I suggest you just don't get" old" It is bad for your health. I have been so depressed I cry all the time sure hope that goes away soon.

Are there any other Seniors out there that have been told you have N or C or both late in live?

Looks like if I have had N for 20 years I would have symptoms other than just being sleepy. I worked and raised 3 daughter on my own...so I was tired all the time. I retired in 1993.
Now I am on mind bending drugs...the second day of taking them...Nuvigil 150mg - one in the morning. At night I take one 25 mg of Imipram. I am still sleepy in the day and stay up all night . How long do you have to take the meds to see any results???? I am having more C attacks and these come when I am sitting down....Now I am so afraid to drive..and won't till everything gets better don't worry.

Been reading everything on N and C. They are studing if the H1N1 vaccine can cause N. Read when the Bird Flu made alot of people sick there was an increase of N patients. I of all things at my age got Mono in 2007. My Dr. said there was an epidemic of old people getting it ....wonder if that is why I got N+C??? Question but no answers...............................

#2 sk8aplexy

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Posted 07 October 2012 - 01:19 PM

I am not a doctor, I am in my early 30's and have had a plethora of health matters from day 1; and have had this in odd and unusual forms likely from soon after day 1, but I'll never really know nor have any need to know at this point.
I've been in very similar sounding places as you, neglected nor heard, and I don't think age is the key factor unfortunately, today...

From what I've pieced together by researching, reading, experiencing as well as contemplating a whole lot.
Along with paying close attention to my own symptoms and matters for a long long while; below I'll attempt responding to some of your concerns and/or questions.

Don't ask me to explain the below stuff, it is all out there and can be simply found; this comes mainly through and/or from the Stanford Center for Narcolepsy.

It seems Narcolepsy with Cataplexy can be triggered by 'strep' as well as other 'environmental' triggers; could food relate, we are what we eat, especially today.? (that last piece is my $0.02; gluten-free = less-inflammation = less-depression as well as other symptoms)
We all, through our own individual genes have certain pre-disposals, to different disease/s; meaning some of us are more likely than others to come down with such...
The autoimmune system, mutates some gene or RNA (?) related to perhaps 'strep' and/or 'environmental' factors, resulting in a loss of hypocretin within the brain; Narcolepsy with Cataplexy.
There was a connection made in Europe, to do with a batch of H1N1 flu shots which triggered quite a few peoples' Narcolepsy with Cataplexy; so it was more the batch than the flu.
An odd part (not really though, that is when only one piece of a puzzle can be, or is, looked at), is that each of us is entirely different in the effect/s (symptoms) we have; much is similar yet vastly variable.
This Narcolepsy with Cataplexy effects our Central Nervous System, Autoimmune System and the Neurological System; simply said, it is no 'sleep disorder' in itself...

Clearly there is an effect on the Psychiatric State too as today's society and culture, at least here for US, are far off from helping and/or acknowledging certain serious structural matters, and effects of such...
(that above is another of my $0.02; which to observe simply takes the willingness to openly look, and think)

Best of luck to you.

#3 DeathRabbit

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Posted 07 October 2012 - 03:15 PM

I am not a doctor, I am in my early 30's and have had a plethora of health matters from day 1; and have had this in odd and unusual forms likely from soon after day 1, but I'll never really know nor have any need to know at this point.
I've been in very similar sounding places as you, neglected nor heard, and I don't think age is the key factor unfortunately, today...

From what I've pieced together by researching, reading, experiencing as well as contemplating a whole lot.
Along with paying close attention to my own symptoms and matters for a long long while; below I'll attempt responding to some of your concerns and/or questions.

Don't ask me to explain the below stuff, it is all out there and can be simply found; this comes mainly through and/or from the Stanford Center for Narcolepsy.

It seems Narcolepsy with Cataplexy can be triggered by 'strep' as well as other 'environmental' triggers; could food relate, we are what we eat, especially today.? (that last piece is my $0.02; gluten-free = less-inflammation = less-depression as well as other symptoms)
We all, through our own individual genes have certain pre-disposals, to different disease/s; meaning some of us are more likely than others to come down with such...
The autoimmune system, mutates some gene or RNA (?) related to perhaps 'strep' and/or 'environmental' factors, resulting in a loss of hypocretin within the brain; Narcolepsy with Cataplexy.
There was a connection made in Europe, to do with a batch of H1N1 flu shots which triggered quite a few peoples' Narcolepsy with Cataplexy; so it was more the batch than the flu.
An odd part (not really though, that is when only one piece of a puzzle can be, or is, looked at), is that each of us is entirely different in the effect/s (symptoms) we have; much is similar yet vastly variable.
This Narcolepsy with Cataplexy effects our Central Nervous System, Autoimmune System and the Neurological System; simply said, it is no 'sleep disorder' in itself...

Clearly there is an effect on the Psychiatric State too as today's society and culture, at least here for US, are far off from helping and/or acknowledging certain serious structural matters, and effects of such...
(that above is another of my $0.02; which to observe simply takes the willingness to openly look, and think)

Best of luck to you.


I blame the rise in autoimmune disorders on sedentary American living, increasing vaccinations, and relative lack of contagions. Since, N is thought to be autoimmune, it is waxing with the rest of them. I'm not one of those 'vaccinations are evil' types. I have no desire to experience Smallpox, Polio, Yellow Fever, etc. But we get a little trigger happy with them,and there's always a risk of a bad reaction. The Swine Flu vaccine, for instance, has shown to increase chances of childhood narcolepsy by 1000 fold.

#4 sunset

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Posted 08 October 2012 - 09:28 AM

I am not a doctor, I am in my early 30's and have had a plethora of health matters from day 1; and have had this in odd and unusual forms likely from soon after day 1, but I'll never really know nor have any need to know at this point.
I've been in very similar sounding places as you, neglected nor heard, and I don't think age is the key factor unfortunately, today...

From what I've pieced together by researching, reading, experiencing as well as contemplating a whole lot.
Along with paying close attention to my own symptoms and matters for a long long while; below I'll attempt responding to some of your concerns and/or questions.

Don't ask me to explain the below stuff, it is all out there and can be simply found; this comes mainly through and/or from the Stanford Center for Narcolepsy.

It seems Narcolepsy with Cataplexy can be triggered by 'strep' as well as other 'environmental' triggers; could food relate, we are what we eat, especially today.? (that last piece is my $0.02; gluten-free = less-inflammation = less-depression as well as other symptoms)
We all, through our own individual genes have certain pre-disposals, to different disease/s; meaning some of us are more likely than others to come down with such...
The autoimmune system, mutates some gene or RNA (?) related to perhaps 'strep' and/or 'environmental' factors, resulting in a loss of hypocretin within the brain; Narcolepsy with Cataplexy.
There was a connection made in Europe, to do with a batch of H1N1 flu shots which triggered quite a few peoples' Narcolepsy with Cataplexy; so it was more the batch than the flu.
An odd part (not really though, that is when only one piece of a puzzle can be, or is, looked at), is that each of us is entirely different in the effect/s (symptoms) we have; much is similar yet vastly variable.
This Narcolepsy with Cataplexy effects our Central Nervous System, Autoimmune System and the Neurological System; simply said, it is no 'sleep disorder' in itself...

Clearly there is an effect on the Psychiatric State too as today's society and culture, at least here for US, are far off from helping and/or acknowledging certain serious structural matters, and effects of such...
(that above is another of my $0.02; which to observe simply takes the willingness to openly look, and think)

Best of luck to you.


Thank you for the reply. I too have been researching N.+C. since I found out I had it and wish they would find a cure. There are some studies going on...........This is the 3rd day of taking my meds and everything is going good..no bad reaction. I can stay awake longer in the day but have to nap am and pm or I will get too tired. Thats when I have my Cataplexy attacks. I am setting the alarm to get up by 8 am to take the nuvigil. Setting the alarm to take a nap and to wake up from a nap. The worse is setting the alarm to make me aware it is bed time as I am wired from the daytime meds............then take the Imipram. I still wake up 3 or 4 times a night.

I am so happy I found this support group and I know I am not alone. Thanks.

#5 The Dreamer

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Posted 17 October 2012 - 03:43 PM

I heard somewhere that Narcolepsy can affect people differently at different times in their lives. It was explaining how some people find out in their teens, while other in their 20's, 30's, 40's when things get move significant, it can also at other periods in life become less of an issue. Somebody commented that it didn't hit until their 60's.

For me things seemed to start getting really bad in my 40's, though looking back I've had it to some extent or another for a long time. Largely because I didn't really know much about sleep disorders or Narcolepsy until my 40's....

The Dreamer.

#6 sunset

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Posted 17 October 2012 - 07:08 PM

I heard somewhere that Narcolepsy can affect people differently at different times in their lives. It was explaining how some people find out in their teens, while other in their 20's, 30's, 40's when things get move significant, it can also at other periods in life become less of an issue. Somebody commented that it didn't hit until their 60's.

For me things seemed to start getting really bad in my 40's, though looking back I've had it to some extent or another for a long time. Largely because I didn't really know much about sleep disorders or Narcolepsy until my 40's....

The Dreamer.



Hi,
You are right, if we had known about sleep disorders we would have treatment earlier. I believe that if I had been treated earlier I wouldn't have the Cataplexy attacks that I have now. I feel sad about all the young people that have to hold down jobs and deal with Narcolepsy. Hope for a cure............

#7 The Dreamer

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Posted 17 October 2012 - 09:20 PM

Hi,
You are right, if we had known about sleep disorders we would have treatment earlier. I believe that if I had been treated earlier I wouldn't have the Cataplexy attacks that I have now. I feel sad about all the young people that have to hold down jobs and deal with Narcolepsy. Hope for a cure............


Yes, its interesting how I've made it this far not knowing what was wrong with me, and now I hope to do even better in life and career, etc. And, I think there are some pretty amazing young people also knowing what they have and making the effort to get educated, get and hold down jobs, and do all that other living stuff. A lot of which, I missed out on because I was too sleepy or thought I had some other limitation.

Wonder if I should try to ride a bike again? Though until a couple years, I had never broken a bone....despite some pretty significant accidents. Including the last time I rode a bike....I had been up late the night before for work, but tried to still make it into work at my normal time...so rode my bike. When I blinked and saw a tree that wasn't really there.... jammed on the brakes and went flying head first over the handle bars....no helmet.... and after I smacked into the pavement, the bike came crashing onto me for good measure. But, I didn't break anything...except for a couple of teeth (I've always had weak teeth.) And, now that I think of it, I wonder if this is why I've always had so much trouble with going up on t-bars or chairlifts with a buddy versus going up alone....for some reason I would have trouble staying upright in a t-bar with a friend, but no problem if I went up alone. Didn't break anything falling out of a chairlift, though leg sure hurt bad... and haven't skied since then. Though apparently, not enough restorative sleep can lead to a variety of other health problems, including a loss of bone density....so maybe now that will get better.

Probably won't ever pursue getting a driver's license again though. There are some things that despite all the stimulants and better sleep, still put me to sleep. sitting in the front seat is apparently one of them. As is an airplane taxiing for take off. Though I'm awake now for the rest of the flight....which I find now is either annoying or boring. Think I liked it better when I would sleep from taxiing for take off and final descent for landing....

OTOH, there's the others that see the diagnosis as an automatic get disability and then not have to do work, etc.

Though its strange that my parents have more than once suggested that I just give up, and go on disability and move in with them....

The Dreamer.