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Narcolepsy And Add/adhd Anyone?


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#1 becky

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Posted 26 July 2008 - 08:12 AM

(Sorry! I think I posted this in the wrong topic so I'm reposting it in this one--thanks!)

Hey, I'm new here and trying to get some answers. I'm 21 and was just diagnosed with narcolepsy a few days ago--only symptoms so far are EDS and the hallucinations (since high school), no known cataplexy or paralysis yet. My doc has put me on Provigil (100 mg in the morning and 100 mg at lunch), 50 mg Zoloft in the morning and 5 mg Ambien to sleep at night. It's only been three days and things are going okay--I couldn't fall asleep at all last night but I figure that's just me getting used to the meds and getting the dosage right. The night before I slept until 4 am with no dreams whatsoever but fell back asleep at 7 am and hallucinated like CRAZY haha (if anyone's experienced anything good/bad with Ambien or Zoloft then please let me know!).

My real question deals with ADD/ADHD and narcolepsy--has anyone been diagnosed with both? And if so, has Provigil helped with memory, attention, organization, etc? Or have you found that another stimulant has been better for both ADD and narcolepsy? Before I did my sleep study I went in for ADD testing and my doc strongly suspects I have it (80% chance WITH a sleep disorder)--I had a very high IQ but my reaction, attention, etc scores were subpar. We're trying to get my narcolepsy under control first though. I'm just going back to school in the fall and I don't want to do horribly again so I wanted to know if anything helped yall or if anyone was going through the same stuff. Sorry for rambling a little--just worried and trying to figure out how to handle this. Thank yall so much!

#2 Lais02

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Posted 26 July 2008 - 11:41 AM

I have also been diagnosed with N as well as ADD... but I don't think I have ADD.

My sleep doctor told me one of the most common misdiagnoses for a narcoleptic is ADD the other common one he said is depression.

The provigil should help with the ADD like symptoms. It is a stimulant just like Ritalin and all the rest they put you on for ADD. Provigil is a million times better than anything else in my opinion.

ADD and N share symptoms, so the doctors don't usually think of N since ADD is so common. If you have N and did a sleep study to get that diagnoses I think there is a good chance you don't have ADD. I was diagnosed with ADD in 2nd grade and it too me until I was 22 to get a N diagnoses.

Anyways the Provigil made an ENORMOUS difference in my school work, so I hope you will see improvements as well.

#3 FaeMomma

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Posted 27 July 2008 - 11:20 AM

ugh hope you already read this...

#4 Shonda

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Posted 01 August 2008 - 07:13 PM

This a new product it's for people with (Add/Adhd) but it's helps people with nacrolepsy and since my son been on this medication we have taken him off all the other medication and he's sleep the whole night, without waking up and I have seen any hallcuations since he been on this (Vyvanse 70mg) look it up along, let me know if you have any questions. Shonda

(shondajdavis@yahoo.com)



QUOTE (becky @ Jul 26 2008, 08:12 AM) <{POST_SNAPBACK}>
(Sorry! I think I posted this in the wrong topic so I'm reposting it in this one--thanks!)

Hey, I'm new here and trying to get some answers. I'm 21 and was just diagnosed with narcolepsy a few days ago--only symptoms so far are EDS and the hallucinations (since high school), no known cataplexy or paralysis yet. My doc has put me on Provigil (100 mg in the morning and 100 mg at lunch), 50 mg Zoloft in the morning and 5 mg Ambien to sleep at night. It's only been three days and things are going okay--I couldn't fall asleep at all last night but I figure that's just me getting used to the meds and getting the dosage right. The night before I slept until 4 am with no dreams whatsoever but fell back asleep at 7 am and hallucinated like CRAZY haha (if anyone's experienced anything good/bad with Ambien or Zoloft then please let me know!).

My real question deals with ADD/ADHD and narcolepsy--has anyone been diagnosed with both? And if so, has Provigil helped with memory, attention, organization, etc? Or have you found that another stimulant has been better for both ADD and narcolepsy? Before I did my sleep study I went in for ADD testing and my doc strongly suspects I have it (80% chance WITH a sleep disorder)--I had a very high IQ but my reaction, attention, etc scores were subpar. We're trying to get my narcolepsy under control first though. I'm just going back to school in the fall and I don't want to do horribly again so I wanted to know if anything helped yall or if anyone was going through the same stuff. Sorry for rambling a little--just worried and trying to figure out how to handle this. Thank yall so much!


#5 AceszHigh

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Posted 16 September 2008 - 12:27 AM

I also have many ADD symptoms. My reaction times are so slow, and I feel so scatterbrained! I've been on pretty much every pill they make as far as stimulants go..
Provigil doesn't help, maybe even makes it worse. I think adderall was the best...





Isn't Vivance just another amphetamine, much like adderall but specially coated to prevent abuse?

#6 becky

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Posted 16 September 2008 - 12:43 PM

I'm the exact same way--slow reactions, amazingly forgetful, mind running a mile a minute, scatterbrained as all get out. I've been on Provigil for a couple months now and it does seem to make me feel physically more alert and not as sleepy (though I can still lie down and nap whenever hahah), but my brain seems even foggier than without it. I'm currently on 200mg Provigil in the morning and at noon and 30mg Adderall at the same times...and I think I can feel the Adderall begin to work and take effect for an hour or two, but never longer than that. That high of a dose should last much longer, I would think, which is why I'm wondering about Vyvanse--it's supposed to be much like Adderall but a different kind of extended release. Instead of the normal MO like Concerta XR (which pretty much gives you a second dose after a certain amount of time has lapsed from the first), Vyvanse is supposed to be a continuous dose throughout the day...at least that's how I understood it from everything I looked at. I could be way off though haha....anyway the doc and I are still workin on it. Le sigh. Good luck to you! I'll update if I find anything new or more helpful

#7 Mike M

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Posted 16 September 2008 - 09:57 PM

My understanding of Vyvance is the same as Becky's. The added chemistry causes the amphetamine to be released in a fairly steady stream, truly making it an extended release. The one narcoleptic I know who is on it has said wonderful things about it. And, Becky, for what it is worth, I too think my two 30 mg doses of amphetamine should last much longer than the 2-3 hours that I think I can feel it working.

#8 Bafflegab

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Posted 24 August 2009 - 11:48 AM

My understanding of Vyvance is the same as Becky's. The added chemistry causes the amphetamine to be released in a fairly steady stream, truly making it an extended release. The one narcoleptic I know who is on it has said wonderful things about it. And, Becky, for what it is worth, I too think my two 30 mg doses of amphetamine should last much longer than the 2-3 hours that I think I can feel it working.


I've noticed that none of the stimulants I've tried work as advertised. They don't last nearly as long as they are supposed to, and the effectiveness is less than reported. Is this common with other PWN? I've always assumed that my metabolism is the reason I need higher than recommended doses of meds, but could it be the narcolepsy? And, if so, why haven't the researchers noticed?

#9 shall

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Posted 24 August 2009 - 11:47 PM

I went to my doc thinking I had add becuase I was so forgetfull and disorganized. I was dozing off driving too but thought it was the hours I was keeping. He prescribed Concerta and it didn't help at all. A year later I went to another doctor complaining of the sleepiness and he prescribed provigil. I thought wow this is great. A year later I was taking 400mg a day and was worse off than ever. I was dreaming and driving now. I got very paranoid and was called into the bosses office and was about to be fired when I told them that I was on a med that i thought might be causing the problem. He told me to go to the doctor and get it fixed or else. I went to the the sleep clinic and was told that I couldn't go back to work until we could get a handle on the sleepyness. I did the mslt and was diagnosed with N. We tryed all the meds and I couldn't tolerate anything but provigile. He wouldn't prescribe the amphetamines. a year later he referred me to the Mayo Clinic becuase he said my Mslt was questioned by his collegues. The first test showed 2 onset rems but it took me 10 minutes to fall asleep. They say you have to fall asleep within 7 minutes. I waited 1 year to get into mayo clinic. At this time im taking 800mg of provigile i do not have a job and I have spent all of my 401 k. Mayo confirmed the diagnoses. They took me off the provigile and gave me dextroamphetamines. Im still sleeping. I can take 20 mg fast acting dextro and go back to sleep.

I think with each ADD diagnoses there should be a sleep study and MSLT. There isn't any substitute for a good night sleep. Unfortunately narcos don't get restfull sleep and that is the reason for the ADD symtoms

#10 eww

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Posted 27 August 2009 - 02:04 PM

I just saw this and I'm in a bit of a rush so I'll write more later, but I wanted to pass along this article. I think you'll find it interesting.