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I'm Exhausted...now I'm Not...now I Am...


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#1 louie

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Posted 20 May 2013 - 04:51 PM

I was just diagnosed with narcolepsy with cataplexy. I have had it for years. I have so many questions!!! First, is it 'normal' to feel tired for a bit and then magically alert followed by exhausted and so on all day long? It seems to be a cycle whose pattern I cannot figure out because there is no pattern. 

 

Also, I'm depressed as all get out. I've been busting my butt for years with the idea that I will find something to help me feel better. With this diagnosis, it seems I won't ever find that magic bullet. Any coping strategies for the newly diagnosed?



#2 Gurr24

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Posted 20 May 2013 - 09:45 PM

Hey there! I am newly diagnosed! Got diagnsoed back in December. And i think it started freshman year of high school, 2 years ago. I'm NOT taking medication. I'm a pretty down to Earth person and don't take medication unless its very important and the benefits outweigh the negatives. And in this case, i will never take medicaiton for Nacolepsy.I still have taht hope that yes things will get better and slowly by slowly they have. I don't sleep as much as i used to before. But my cataplexy seems to be getting a little worse, progressing i guess you could say.

I would suggest dont feel depressed about it. See it as something that will go away eventually. I believe in God, so i've been doing faith healing, and it actually works alot. I won't be giving up hope anytime soon.

And try experimenting with foods you eat? I've noticed that if i eat oreos, i will end up falling asleep for a long time. And try noticing what foods make you fall asleep. Drink lots of water and try being healthy juist in general, it probably helps a bit.

Dw, you're not alone, there are people who understand out there!



#3 Hank

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Posted 24 May 2013 - 08:07 AM

I was just diagnosed with narcolepsy with cataplexy. I have had it for years. I have so many questions!!! First, is it 'normal' to feel tired for a bit and then magically alert followed by exhausted and so on all day long? It seems to be a cycle whose pattern I cannot figure out because there is no pattern. 
 
Also, I'm depressed as all get out. I've been busting my butt for years with the idea that I will find something to help me feel better. With this diagnosis, it seems I won't ever find that magic bullet. Any coping strategies for the newly diagnosed?


Daytime sleepiness follows the REM cycle of about every two hours, just like at night. That is why the MSLT consists of naps 2 hours apart.

When we are active or stimulated, it is easier to overcome the sleepiness. Passive situations make that harder. Heavy meals during the day, sugar/ caffeine crashes, poor sleep prior night, emotional stress- many of these things make sleep harder to stave off during the day. These things make daytime sleepiness seem less predictable than it actually is.

Sleepiness is always there. There are things that make it easier or harder to manage. The trick is finding what does and does not work for you.

Regarding depression, its symptoms overlap a lot with N symptoms. People with N have a high incidence of depression. Cataplexy is often treated with antidepressants- so you could consider if it is a problem.

#4 exanimo

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Posted 25 May 2013 - 10:41 PM

That is normal - for us with narcolepsy. Basically - as Hank said, we can become sleepy within a few hours of waking up.

Part of this is attributed to REM intrusion ( where rem intrudes into your waking hours) and part to sleep deprivation. This is because we do not enter the correct sleep cycles for the correct amount of time. In normal adults - 25% of sleep is REM. it's much higher for PWNs. We also then lack a good portion of the other stages and so even though we sleep as much - if not more - than normal people, we experience symptoms of sleep deprivation (memory lapses, brain fog, automatic behavior, mood swings, hallucinations, etc).

After a sleep attack, microsleep or a nap, we are temporarily refreshed and alert, only to go through it again in a few hours. This is why stimulants help, as they will mask the sleepiness.

#5 louie

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Posted 27 May 2013 - 10:28 PM

I am glad to hear its normal to be exhausted and alert in cycles. Mental stimulation really does help. Thank you for responses.

#6 Mmartens3

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Posted 28 May 2013 - 11:08 PM

When we are active or stimulated, it is easier to overcome the sleepiness. Passive situations make that harder.


Yes, this describes me. When I am on a family outing that involves walking around at some sort of festival and participating in physical activities I am less likely to have sleep attacks. I seem to have more energy. But if I had stayed at home that day I would have been more sleepy. Although there always seems to be a time during an outing when I realize I have had enough and am ready to have a nap. But that time is always later than it would have been had I been less stimulated.

I just thought it was adrenaline kicking in.

#7 TiredAgain

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Posted 22 July 2013 - 07:15 PM

I never thought about it in cycles, but that is exactly how it goes the majority of the time.

When I go anywhere or do anything I know within a couple of hours that I will start to get grouchy or have brain fog. Sometimes I can keep going and it goes away. But the bewitching hours like between 2:00 & 3:00 I usually can't push through except at work.

My sister has become great at reading my symptoms and when were shopping or something like that she catches it quickly and will help work around it. She will offer to go eat or she will hurry up in the store etc...Because of that I will do more things with her then anyone else. About half of the time I'm asked to do something that takes more then 2 hours I say no because I feel like I'm the downer of the group.

#8 Livi

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Posted 31 August 2013 - 01:26 PM

Exanimo, I was only in REM for 18% of the time in my PSG and I have N.
Actually, my PSG showed normal rhythm, but a reduced sleep efficiency of 63%.
So it varies even amongst PWN.

#9 jennel

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Posted 12 September 2013 - 01:45 PM

Daytime sleepiness follows the REM cycle of about every two hours, just like at night. That is why the MSLT consists of naps 2 hours apart.

When we are active or stimulated, it is easier to overcome the sleepiness. Passive situations make that harder. Heavy meals during the day, sugar/ caffeine crashes, poor sleep prior night, emotional stress- many of these things make sleep harder to stave off during the day. These things make daytime sleepiness seem less predictable than it actually is.

Sleepiness is always there. There are things that make it easier or harder to manage. The trick is finding what does and does not work for you.

Regarding depression, its symptoms overlap a lot with N symptoms. People with N have a high incidence of depression. Cataplexy is often treated with antidepressants- so you could consider if it is a problem.

I appreciate the question being asked and the answer being given! I honestly never thought to categorize it or why it happened, other than  - it happens! I sometimes try to walk away from my desk when this happens at work. If I'm at home I actually start to feel a bit sick - dizzy, lightheaded, etc. - if I don't lay down. It will eventually pass though it can be tough.



#10 slo.mo.a.go.go

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Posted 12 September 2013 - 08:54 PM

Thanks for starting this thread. I couldn't find a medical term to describe this & gave up trying to explain this feeling to docs.  It's unsettling to feel these opposites of exhaustion and wakefulness come at you throughout the day without being able to stop and rest for a bit somewhere in middle. I've only felt a fleeting hint of that middle range of the vigilance scale -middle range meaning a comfortable level of being alert&awake. it crazy but I don't know if that middle ground is real or even exists but I just have to assume so. 

 

As with other posters i've have that correlation. if I'm engaged mentally &/or active, i suddenly awake and as soon as the activity or novelty is gone,zzzzz.  I tried napping, thinking I've somehow exhausted myself, but  there wld no change in my tiredness. 

 

A sizable chunk of this cyclic awakeness can be attributed to my adhd-pi. Anyone else who relates to this cycle of now I'm awake/now i'm exhaustion who are N w/ adhd? or can this symptom be severe and definitive and just be N attributed.

 



#11 slo.mo.a.go.go

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Posted 12 September 2013 - 10:00 PM

Daytime sleepiness follows the REM cycle of about every two hours, just like at night. That is why the MSLT consists of naps 2 hours apart.

Hank, thanks for that info. When i can remember, i've been recording my EDS symptoms as an extension of my sleep journal. So far my cycle of awake peaks and sleepy valleys on some days is a 2hr cycle. unfortunately, my monthly lady cycle really complicates my N symptom picture and makes half of the 12wks i've been journaling seem unrelated. but on normal days, i can look for that pattern and that's helped me to plan/do a coupla of errands a bit more successfully and with much less frustration.