ADD and Narcolepsy as comorbid conditions?

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This topic contains 13 replies, has 10 voices, and was last updated by  JBoom 1 week, 1 day ago.

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  • #58848

    Household6toCrewof7
    Participant

    I am a 37yo female that was “officially” diagnosed with ADD 3 years ago (I’ve always suspected). But 8 months ago I did a sleep study because my Dr wanted to check for sleep apnea but they found narcolepsy instead. When I asked the sleep specialist how common it was for the two to be comorbid, she didn’t seem to think anything of it and kinda blew it off. She said the treatment (medicine wise) is pretty much the same. So I thought I’d ask here. Does anyone else have ADD and Narcolepsy (or know anyone else that does)?
    I do completely understand that both share many of the same characteristics (and Narcolepsy is considered a rare condition), I’m just trying to figure out how common (or rather uncommon) it is to have both.

  • #58850

    toomanytabs
    Participant

    I wouldn’t be surprised if narcolepsy was more common in folks with ADHD. A lot of people with ADHD have irregular sleep-wake cycles and poor sleep quality, similar to narcoleptics. Maybe the some of the same brain regions are involved? It is an interesting question. I have ADHD, diagnosed as an adult, and I often wonder if I have some degree of narcolepsy as well, though I haven’t been assessed – I have a terrible time waking up, have periods during the day when I can barely keep my eyes open, and I have a burst of energy in the evening.

  • #58941

    CatMa
    Participant

    I have both ADD and narcolepsy as well. What a combination. Both make it very hard to get anything done. With my head nodding in the afternoon, starting around 3pm, I would lose the ability to think of anything except my pillow. My ADD often keeps my brain running in circles (and also, add an earworm, some song I know allll the words to, that goes round and round!) The best thing that has helped me, is to be sure I give myself at least 8-9 hours of sleep every night. (No, not 7-8, because that always slips down to 6-7.) Figure out what time you need to get up, then get to bed at a time that will give you at least 9 hours of sleep. I think that we wake up hard sometimes (or all the time) because we’re trying to wake at the wrong spot in the sleep cycle. So the fix is to try to reset that sleep cycle. Sleep is far too important to just put off (I’m telling this to myself, too, because I need to hear and re-hear it.) We with ADD don’t have the luxury of just getting by on, oh, 6 or 7 hours a night ought to do it. Because it never does, not for us. Our best medicine is sleep. I’m just realizing now… maybe a good gift for myself is an automatic feeder, to keep the cat from climbing all over us both at 5:30am every day! Turn off the screens by 8pm, plan your next day, count your blessings, read a book, and go to bed.

    Today, I’ve just begun taking Adderall instead of Ritalin, or actually, instead of methylphenidate. I was taking two 20mg SR doses of methylphenidate a day, a.m. and p.m., to avoid the post-med come-down in the afternoon. We’re hoping the Adderall may actually work better for me, and not drop me in a sleepy puddle mid-day.
    Best of luck to you!

  • #58960

    Household6toCrewof7
    Participant

    Thank you Catma!
    I am on Adderall XR 30mg in the morning and another 15mg around 2pm. I will mention that it really helps to set an alarm for about an hour before you want to wake up & take your morning dose. By the time your alarm goes off again, the meds have kicked in & mornings go a bit smoother. I am also on Ambien CR 6.25 at night to help achieve a REM at night instead of walking around in various stages of REM during the day. I will agree that not allowing myself enough sleep is my biggest issue. The only quiet/down time I get is after the kids go to bed, which is often later than I’d like.(I should probably mention I have 4 ADDers. 😉 )
    Thanks for sharing & letting me know I’m not an anomaly!

  • #58962

    Household6toCrewof7
    Participant

    Oh! I should probably add that being on XR doses back to back isn’t the normal practice. (Or so ive been told…) I have to take XR doses because my body doesn’t absorb medication well. (Previous gastric sleeve surgery) On regular release doses I crash within 2 hours of taking the dose. :-/

  • #58975

    domalskid
    Participant

    Hi, Household6toCrewof7!. I have ADHD (officially finally dx’d at about 20 years old [am 36 now], but showed signs since a baby). I was dx’d initially with Klein-Levin Syndrome in my late 20s, an extremely rare sleep condition where sometimes you sleep for days, even weeks, on end. Longest I ever slept was 5 1/2 days, only getting up to use the bathroom. At that time, I would force myself to drink some water, but was way too out of it, tired and groggy, and didn’t eat nor take my daily meds for several different conditions, including Bipolar Disorder. I would wake up so incredibly sick after those several days of sleep, that I would be shaking uncontrollably and would honestly crawl to the bathroom and then the kitchen. I’m sure my blood sugar was very low, and I was going through withdrawals from not having taken my psych meds the entire time. This happened several times a month. Finally, upon a redo of a sleep study (I was also dx’d with mild sleep apnea), where I had told them the C-PAP machine felt like it was suffocating me and taking it off, the noise, the feeling of suffocation, all led to deeply disordered sleep. During the redo of the sleep study, it was found that I no longer had sleep apnea (thanks to a 40 pound weight loss!). I also took a sleep test I hadn’t before, called MSLT (multiple sleep latency test), which is conducted during the day. Taking 15 minute naps about every two hours gave the doctors the information to dx me as having narcolepsy. Now, I believe they still have Klein-Levin Syndrome on my record, but I don’t believe I have that at all. The narcolepsy and its treatment have made so much difference in my life. I no longer sleep more than 12 hours max (and that’s a rare occasion to even sleep that much; 8-10 hours is what I need the most). I take Xyrem at night to help me get the important deep restful sleep that I wasn’t getting before, and then taking Provigil during the day to counteract the often severe sleepiness during the day. I also found that after being treated for narcolepsy, my ADHD isn’t as severe as it was before. IMO, my ADHD was quite severe. Now, I would describe it as mild, though the narcolepsy treatment isn’t responsible for all of it. I also worked very hard for many years finding the right medications, coping skills, and implementing various pieces of advice in a way that works for me and minimizes symptoms during the day.

    I had narcolepsy even as a child. I remember being sent to the school social worker because, twice, this one teacher had seen me laugh uncontrollably and collapse on the floor. Apparently, they thought it was psychological, but in actuality (only having known as an adult), what I had been experiencing was cataplexy, which is loss of muscle control when overcome with strong emotion. Some people might collapse from being suddenly frightened or scared. Other people maybe when they find out terrible news, and the despair causes them to lose muscle control, and thus collapse. I stopped collapsing in my mid-20s I believe, but wasn’t dx’d with narcolepsy until my early-to-mid 30s.

    Proper treatment has made all the difference in the world. I literally had minimal quality of life while suffering with the narcolepsy, the various mental illnesses I have, and several physical ones as well. Being able to wake up every single day has given me a quality of life I never dreamed possible. The first time I took the Xyrem, I have NEVER in my ENTIRE life, woke up feeling like I did that morning. I was wide awake, rested, and felt like I could anything that day, and succeed. Over time, the restful feeling became less pronounced, but still, as a memory, was amazing.

    Feel free to email me if you have any q’s or just want support. 🙂 domalskid@yahoo.com

  • #80486

    wardmala
    Participant

    Hi this is my first time on a website. I am in tears. I am trying not to lose my job that I have been on since 2013! A record…i usually end up fired or I am smart enough to leave before I get fired. I was dx in 2012 with narcolepsy. Dxd in 2005 with ADHD in graduate school. I hit the brick “wall” as I called it: low focus, low concentration, not able to complete assignments or it taking and extremely long time to do simple tasks. I was on Ritalin 3x a day for years and WD sx were murder on family and friends. Migraine increased, muscle cramps, and I bet it. But really felt like kicking a serious drug. Using NAC and detox regularly. I cant finish my project. I am dont know why!! I took my meds, i sleep 8 hours, i drink coffee, i take Jet alert! And 3 hours on a single thing on my to do list. I try to figure out…am I OCD? But I procrastinate and quit. I want to quit now!!
    I am so much smarter than this but I look incapable and dumb.my relationships suffer just had a long talk with my boyfriend who can’t see my strengths. Why? I cut him off when he talks, i don’t finish tasks, leave chores half done, leave work late, i have too much in my plate, i over commit. I really love him but I really feel like I am just too much too handle. This is too much for me to handle. Not married, no kids, and 37 y.o. i am scared to ho back on stimulants but At least i was better at my job and maybe in relationships if I did not stop taking them on the weekends. I am on Nuvil 250mg it is not working and I keep telling my doctor…i take everyday no skipping…I can’t!! Please any advice you have is much apprechiated. Thank you. (Still crying)

  • #80632

    alishad002
    Participant

    Thank you so much for sharing. This sounds so much like me. I was diagnosed in college with ADD but always would say i feel like I have narcolepsy because my eyes would get so heavy during the day I couldn’t keep from shutting them. I’ve never been checked, I’ve always been told it’s ADD and depression which can also make you tired.

  • #81011

    mariabf
    Participant

    I know this is about 6 months old, but I wanted to comment. I was diagnosed in 2001 with ADHD at the age of 24. In September 2017 I realized I had all the symptoms of narcolepsy my entire life. Sleep attacks going back to daycare when I was 3-4 years old. Hallucinations when falling asleep and waking my entire life (don’t remember a time I didn’t have them). Not as often but sleep paralysis. I have noticed I even have muscle loss with emotion albeit mild. I drop things when I get a build up of anger. I have fumbled things with laughter, I didn’t notice my husband did. My knee gave out when I got embarrassed

    So off to the sleep specialist. Well 2 actually. Two PSG’s and MLST’s later, both came out negative for Narcolepsy. No rem, and sleep latency’s were 13.5 on the first and 14 on the second. Sleep apnea, RLS & other movement disorders, and circadian rhythm disorders were ruled out. IE all other sleep disorders. All the PSG showed was 1) I don’t sleep well at all in the lab. only 55-65% sleep efficiency. 2) I wake up and jump from deep to light sleep ALOT, so fragmented sleep. 3) I had hypersynchronous theta waves during stage 1 (not normally seen past the age of 13). The actigraphy shows that I have fairly decent sleep habits I go to bed between 9-11 every night and wake up 5-7am every morning including on weekends. The MLST 1)I have a normal sleep latency 2) I don’t go into rem 3) I have hypersynchronous theta waves during stage 1 and stage 2 (again not normally seen). 4) Despite not going into rem, I dreamed AND had hallucinations(ie heard sounds that couldn’t have happened). I don’t have my followup on my mlst with the 2nd sleep specialist until next week April 13th, but since the mlst was in February I got the results earlier. My diagnosis after my first visit with her was hypersomnia unspecified.

    So that led me on a journey of what and the heck was causing all the narcolepsy symptoms all my life if I didn’t have narcolepsy. I was diagnosed with depression and anxiety in 2009 after a really shitty year, and I was actually depressed in 2012. But my symptoms started as far back as 1980-1981 at least. Not to mention my sister & brother both have all the symptoms and both diagnosed with ADHD. My parents both have some symptoms of narcolepsy as did my grandparents, great grandparents on both sides. AND my son has had hallucinations when wakeing and falling asleep since before a year old, and now at 3 has started have intermittent sleep attacks. SO CLEARLY, there is something physiological wrong that runs in my family.

    Well my research all leads back to my ADHD. It runs rampant in my family several nephews have been officially diagnosed, my parents show all the signs but never diagnosed. And it is well known ADHD runs in families. So I started there. Tons of articles indicate that people with adhd have sleep disturbances, including parasomnias and fragmented sleep. There is an additude article where a psychologist termed “eeg negative narcolepsy”. She believed that some people with ADHD would suddenly fall asleep during the day because their brain would give off theta wave intrusions. Theta waves… wait a minute I had hypersychronous theta waves in my psg and mlst during a time they aren’t normally seen. Huh, so I investigated theta waves. Turns out there was a study done on adhd children and it was found that there is a subset of people with ADHD that have extra theta waves. Looked into them further, they are often seen in children who are drowsy…. so they are associated with drowsiness, and per the psychologist sleep attacks. That explains my sleep attacks and constant sleepiness. Looked into it further. Theta waves in the meditation world is known to trigger VIVID hallucinations/imagery. Oh and hypersynchronous theta waves are saw in REM, and spikes are seen when waking (ie when I have hallucinations) Huh, well if that is the case it explains my hallucinations and dreams even without rem sleep happening. So that explains almost everything, BUT the muscle loss with emotion. Well until I found a study that showed that theta wave intrusions occurred during cataplexy in children. WELL, so back to theta waves, which I know I have in times usually only seen in children….. SO. Well and I have run into a few ADHDers online who where diagnosed with Narcolepsy but had mlst results the same as mine.

    So my theory, that there is a subset of people with ADHD who have these extra Theta waves that cause Narcolepsy or as the psychologist stated “eeg negative narcolepsy”

  • #82441

    jerseynoah
    Participant

    Hey,

    I have ADD and narcolepsy. I take Adderall 2x/day. I started with 5mg 2x/day and it did nothing. I increased to 10mg/2x day and it was helpful. I am starting to increase to 15mg 2x/day. I wasn’t diagnosed with either until I was 30, but definitely had both growing up. My parents were not the type of parents to get things like this checked out, but my dad was definitely narcoleptic as well, he just took very poor care of himself (he also died super young). My brother also started getting diagnosed with things he had his whole life in his late 20’s/early 30’s. My brother definitely was a good example for me, but it took me a while to understand when something wasn’t the most healthy and I could do something about it. Life is SOOO much better now that I take medicine for this stuff.

  • #82497

    wardmala
    Participant

    So what happened? Any updates.

  • #86253

    wondertwins
    Participant

    Yes. I was diagnosed with ADHD as an adult (very clear I had it as a child looking back). I am being treated for sleep apnea with a CPAP but my pulmonologist suspected it would not change my day time sleepiness due to my sleep study results (which show signs of narcolepsy).

  • #86289

    JBoom
    Participant

    There is growing evidence that ADHD and Narcolepsy are basically the same condition, expressed in different ways. Or, more to the point, that ADHD is fundamentally a sleeping disorder just as Narcolepsy is. It’s not a widely accepted idea at this point, and it may not pan out to be true. The fact that the same medications work on both is a good reason to at least continue researching this hypothesis.

    Worth an internet search for anyone interested.

  • #58963

    Household6toCrewof7
    Participant

    A sleep study would be extremely beneficial if you are struggling. It took over 15yrs before someone listened enough & realized I wasn’t tired all the time because we have a bunch of kids. I would love to hear an update if/when you’re able to do a study!

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