ADD and Narcoleptic

[Anonymous]

Background: My sister and I have ADD and narcolepsy; treatment for my narcolepsy covers enough of ADD for functionality. (My father had narcolepsy, too.) My son has ADHD, tends toward anxiety, and has the genetic markers for narcolepsy, though at 13 he hasn’t had a sleep study yet. He doesn’t like how he feels with Methylphenidate or Strattera and is presently unmedicated (except for removing the previously hidden food allergy foods from his diet). He doesn’t like how he feels when his mind returns from a “space out.” Don’t know if that’s an ADHD spaceout, or a narcolepsy spaceout.

QUESTIONS: Should the co-existent ADHD and genetic markers for narcolepsy (and anxiety tendency) lead to different strategies in treatment? How common is the coexistence of ADD and narcolepsy? Would I better approach that through an ADHD specialist, a narcolepsy specialist, or ……. What are your thoughts?

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[Anonymous]

I was diagnosed narcoleptic and have used Adderall (dextroamphetamine and amphetamine) and switched to Provigil (Modafinil) because it is less up an down. That has worked pretty well for a few years and it might work for your son’s ADHD even though that is not was it officially supposed to be used for. I have also read a good deal about how doctors have been using provigil because it has less side effects and you usually only have to take it once a day. It’s also not a controlled narcotic so you can have a refillable prescription without all the hassle. They may be able to do a sleep study on your son even though his so young. That might explain the “spaced out” episode.

As for the dual diagnosis of narcolepsy and ADD, I am currently making appointment to be evaluated for ADD and have talked to a few other people who have the same diagnosis. I don’t think ADHD co-exists with narcolepsy but ADD makes sense, at least as much as the research I can find on the two.

I hope you can find an answer. I would talk to both the ADHD specialist and a sleep specialist. Good Luck!

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[Anonymous]

I would also be interested to know how you and your sister manage the dual diagnosis. What kind of issues have you had to deal with because of the narcolepsy and ADD?

Thanks.

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[Anonymous]

Let me copy a portion of my graduate students work on sleep and ADHD:

The objective identification of pathologies accountable for the sleep problems in childhood ADHD has proven to be evasive. In three out of 23 studies using polysomnography (PSG) or actigraphy no differences were detected in sleep between ADHD and controls121,128,138, while in 20 studies, significant differences were detected. However, amongst these studies, there were controversies as to how sleep was affected. Among the major findings, one study reported that stage 3 of sleep is affected129, another study reported increased slow wave sleep (SWS)130; and five studies reported increased REM sleep130-133,204, while four studies reported decreased REM sleep93,135,136,139. Moreover, two studies reported decreased sleep duration 103,141, while two studies reported increased sleep duration130,133; two studies reported increased stability of sleep patterns112,142; and one study reported decreased sleep efficiency143, while another study reported increased sleep efficiency130 in ADHD.

There are only nine studies on sleep disturbances in adult ADHD. Questionnaires revealed that there are sleep problems such as non-restorative, poor sleep quality and initial/middle insomnia, and daytime sleepiness in adult ADHD69,113,144-148.

I do believe there is a connection between ADHD and narcolepsy but it has not been flushed out. There is definately a connection b/w ADHD and sleep problems though.

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[ellamama]

This is really interesting. For years I’ve had issues with “excessive daytime sleepiness”. Despite what feels like sufficient and high quality sleep I’ve fallen asleep in way too many inappropriate situations, e.g. singing in a chorus during an instrumental section where we were permitted to be seated; jury duty; etc. A few years ago, I had a sleep study to rule out narcolepsy. It didn’t show anything other than wriggle my feet (which I’ve done since childhood). The doctor prescribed Provigil for times when I was afraid falling alseep would be dangerous (e.g., driving on a long trip). It was very helpful for ADHD, but pooped out in the afternoon. I’ve found Concerta more helpful.

But I’m still really interesting in the sleep issue. It’s only recently that I’ve realized the falling alseep problem is (presumably) ADHD-related.

Gee, now it’s time for me to go to bed!

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[Anonymous]

Provigil or modafinl is like a weak Concerta but stronger than a cup of coffee.

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[Anonymous]

My late mother was diagnosed with narcolepsy later in life and we thought that might also be my problem since there’s a genetic component. I had a sleep study in ’92 which ruled out the narcolepsy (I couldn’t fall asleep for the second time in my life). My mom was sure she had ADHD as well (probably from her own research) but was never diagnosed. She had restless legs syndrome, cataplexy, exploding head syndrome (that one sounds really weird), etc. and was seeing Dr. Shapiro at the sleep clinic in Toronto.

I’m going in for my first assessment meeting tomorrow (one of three) for ADHD.

As for me, my husband won’t let me drive long distances alone. When I worked outside of the home (I’m now self-employed work-at-home entrepeneur), although it was only a 20 minute drive to work, I was in danger of falling asleep on the way. I tried everything, windows wide open in the winter, radio blaring, slapping myself in the face until it really hurt, etc. I also fall asleep regularly at home watching a movie, and am at risk for the same when we’re out at the movies (why do I fall asleep even when the movie’s action ramps up and it’s LOUD?) I’ve also fallen asleep at the computer at home later at night, and reading more than a paragraph of a book is often enough to conk me out. I don’t want to fall asleep but I can’t help it. If I go up to my bed and lay down during the day, I can’t fall asleep!

I did an illicit trial of my husband’s Ritalin for 3 weeks and boy did I sleep good! I slept all the way through the night. Lately i’ve been going to bed dead tired but twenty minutes later I might wake up as alert as if it was morning.

I’m hoping that the psychiatrist I’m seeing tomorrow will be able to help me.

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[Anonymous]

Hey, great thread! I happen to be HVZ’s sister-also ADD and narcoleptic. We now take Nuvigil, which is an isomer of Provigil and works much better for us. When I was on Provigil, I took it twice a day and sometimes still had to boost it with Ritalin at times. with the Nuvigil I have only rarely had to boost it and I take it only once a day, not twice. Between getting the hidden food allergies out of my system and starting Nuvigil, my ADD has been much easier to handle. Both my children have ADD and food allergies, but not the genetic markers for Narcolepsy. They have not had sleep studies however. My older child has ALWAYShad trouble getting to sleep–due to what we call “brain buzz” but has recently started Focalin (another methylphenedate with a slightly different delivery system than Concerta) and says that does help–not so much “buzz” when she’s trying to sleep. She also says she likes the way Focalin works better than the Concerta she was once on. There are others in our family with both ADD/HD and narcolepsy. Someone really needs to study this!

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