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Any Adhd-Pi And Narcolepsy Out There?

ADHD ADHD-PI SCT Narcolepsy and ADHD Narcolepsy and Depression Adderall and Narcolepsy

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#21 dasikins

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Posted 24 February 2013 - 12:07 PM

There are several antidepressants that can be used to help with cataplexy, hypnagogic hallucinations and sleep paralysis. Prozac and the tricyclics are among those that are most commonly used. They work by suppressing REM. C, HH and SP are all caused by REM intruding into the wakeful state. I take Protriptyline at bed time (a tricyclic antidepressant) both for my narcolepsy symptoms, and because I have REM related hyponea.

Would you have any suggestions on finding help in diagnosing sleep ailments?  Man, I am sick of being tired.  It's been 8 years.  sleep at work have to nap daily, blah blah, same stuff you guys have heard.  My PSG showed nothing, but I didn't sleep all night since I was freezing and it was noisy (and I never go to bed at nine.)  I think I would fail the MSLT because as soon as I am suppose to sleep my brains says no. I am following up with the guy who read my sleep study, but he has all bad reviews and works with pulm stuff primarily.  

 

Any advice?  I am so scared I will never get help.



#22 MINItron

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Posted 25 February 2013 - 01:18 AM

Would you have any suggestions on finding help in diagnosing sleep ailments?  Man, I am sick of being tired.  It's been 8 years.  sleep at work have to nap daily, blah blah, same stuff you guys have heard.  My PSG showed nothing, but I didn't sleep all night since I was freezing and it was noisy (and I never go to bed at nine.)  I think I would fail the MSLT because as soon as I am suppose to sleep my brains says no. I am following up with the guy who read my sleep study, but he has all bad reviews and works with pulm stuff primarily.  

 

Any advice?  I am so scared I will never get help.

 

My first sleep doctor was a pulm as well, in fact the entire practice was nothing but pulms. I ended up going back to my PCM to get a new referral to a better sleep center that had better doctors with better a broader range of training.

 

The first doctors were treating me as idiopathic hypersomnia, and completely ignoring my REM related hyponea. The new doctor looked at the same test results, and after taking a more thorough history diagnosed narcolepsy. He was also concerned about the rem related hyponea that the pulmonologists didn't even mention to me. 

 

A good sleep specialist is going to understand that insomnia is part of many sleep disorders, even sometimes narcolepsy. The sleep center is at fault as well for not controlling the temperature to suit you better, and keeping the noise down. I had no real problem falling asleep for my PSG or my MSLT, but the EEG they used was SO LOUD. I am sensitive to ultrasonic sounds, and the hum from the leads that were just above my ears was maddening. It forced me to sleep on my back during the MSLT naps which then led to them turning into 20 minute sleep paralysis sessions. It is a sad truth that most narcoleptics have to spend a decade and several doctors searching for a diagnosis.



#23 DeathRabbit

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Posted 25 February 2013 - 10:15 AM

Yeah, especially if you have anxiety, insomnia is going to be a problem, even if you are dog tired due to N. Plus, many of the stimulants can remain in your system enough to prevent sleep, even long after they've outlived their therapeutic effect. Another reason I'm staying away from the stuff these days.



#24 dasikins

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Posted 25 February 2013 - 11:03 PM

Yeah, especially if you have anxiety, insomnia is going to be a problem, even if you are dog tired due to N. Plus, many of the stimulants can remain in your system enough to prevent sleep, even long after they've outlived their therapeutic effect. Another reason I'm staying away from the stuff these days.

 

F my life lol....Yah I have trouble sleeping now, but at least for now I can stay awake during the day.  When I don't take them on the weekend I am reminded how bad it was.  



#25 dasikins

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Posted 25 February 2013 - 11:04 PM

My first sleep doctor was a pulm as well, in fact the entire practice was nothing but pulms. I ended up going back to my PCM to get a new referral to a better sleep center that had better doctors with better a broader range of training.

 

The first doctors were treating me as idiopathic hypersomnia, and completely ignoring my REM related hyponea. The new doctor looked at the same test results, and after taking a more thorough history diagnosed narcolepsy. He was also concerned about the rem related hyponea that the pulmonologists didn't even mention to me. 

 

A good sleep specialist is going to understand that insomnia is part of many sleep disorders, even sometimes narcolepsy. The sleep center is at fault as well for not controlling the temperature to suit you better, and keeping the noise down. I had no real problem falling asleep for my PSG or my MSLT, but the EEG they used was SO LOUD. I am sensitive to ultrasonic sounds, and the hum from the leads that were just above my ears was maddening. It forced me to sleep on my back during the MSLT naps which then led to them turning into 20 minute sleep paralysis sessions. It is a sad truth that most narcoleptics have to spend a decade and several doctors searching for a diagnosis.

 

Hey thanks this is very helpful.  My PCD is of no help.  I should find a new one so they can help point me in a direction.  I will drill him tomorrow.  I just paid for my sleep study-wow over $1000 to know nothing.  Not cool.  



#26 slo.mo.a.go.go

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Posted 24 March 2013 - 04:24 PM

I have not been officially diagnosed with narcolepsy.  Since I was a wee bit teen (I am 31 now)  I have struggled with fatigue and sleep issues primarily NES.  When I take the Narcolepsy self quizzes it's pretty darn high.

I have always had depression by my new Psychiatrist recently diagnosed me with ADHD.  I think I am primarily PI. 

Is there anyone else who is diagnosed with both?  Maybe even SCT?

 

 

I was diagnosed with ADHD about two years ago.  I don't know my predominant type, but I would venture to say inattentive.  

 

The doctor who initially suggested I had narcolepsy said that it was possible that I don't have ADHD and that many of my symptoms are related to narcolepsy.  Now since the MSLT, he isn't totally convinced I have narcolepsy.  I still don't know the full results of the MSLT or PSG, but I do know my doctor follows very textbook narcolepsy MSLT results.  

 

I take Ritalin when I'm at work and school... and it isn't perfect, but life is better with Ritalin for sure.

 

 

IDK if I have narcolepsy....All I know is I feel like the fatigue I have has ruined my careers and life.  It's not a normal fatigue.  It's almost like I am missing a vital nutrient if that makes sense... Working my way down the list.

 

Hopefully more research will prevail new and effective treatments.  There is so much we still don't know especially about the brain!

 

dasikins & dormir,

I feel like i'm in the same boat w/ you two. I editted your posts to the nubs that really resonated w/ me.

 

for me, the "is it N?" journey has been:

Teens & early 20's-sleeping thru HS & college but believing that it's depression (but how not to be down when u see life passing u by thru yr half-opened eyes!!).

 

@ age 26- ID'ing & getting DX'd w/ the ADHD-PI/SCT symptoms 2nd & finding stims help to function, but still not able to find a functional balance.

 

Finally, during the stim shortage, I had to confront the fact I was unable to stay awake, esp. when driving. My ADHD Psychiatrist let me confirm those experiences are abnormal & disconcerning and suggesting N. Definitely took me a year to even wrap my head around that. N was defined by what Hollywood had shown me. Boy, was I wrong!!

 

Now 33, despite all my hrs researching N & finding I had 3 of 4 symptoms including mild C, I can't get myself to call the sleep specialist. I'm scared bc the mslt is not fool-proof and I would have a hard time drumming up the strength to get another. But the cost too!! No health insurance! yipes!!!

 

I really fear I'm losing ground to a fight against being a zombie!

 

But thank you for your posts, it helps me trust my gut instinct and maybe call the sleep spec/neuro. hopefully we will all find our answers &/or a functional existence!- April







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