February 24, 2011 at 5:34 am #89198
AnonymousInactiveFebruary 24, 2011 at 5:34 amPost count: 14413
Both my daughter and I have delayed onset sleep disorder – confirmed with a sleep study. This is not just trouble getting to sleep because your mind is overactive or you are a “worrier”. Since birth, my daughter just can’t go to sleep before 11 to 12 pm. Sometime it goes to 2 or 3 am. (and it is not insomnia)
I won’t dwell on the sleep disorder (it is complicated) — my question that I have had differing answers to it this “Is this part of the ADD or something separate. (and therefore should the focus of treatment be on the ADD or the sleep disorder — as both are causing trouble in high school)REPORT ABUSEFebruary 24, 2011 at 6:32 am #101200
AnonymousInactiveFebruary 24, 2011 at 6:32 amPost count: 14413
HI– I just became a member this minute. : ) My 20 year old son was diagnosed with ADD a few years ago and his doc suggested I check it out for myself. I’m responding to you because my son since birth ALWAYS fell asleep very late and at 18 was diagnosed with delayed onset disorder. I do not have the answer if this is part of ADD or not. I would suspect there could be a link and will watch this space to see what others say. I’m just writing in sympathy. I had delayed onset myself, throughout childhood and young adulthood, and only now suspecting/realizing I have ADD. For me, the sleep condition went away once I became a single mom with a demanding job and was tired ALL the time. I feel asleep the second my head hit the pillow. But for the last several years, I just do not go to bed before 1 or 2, there would be no point.
My son recently is mostly spared the delayed onset because he currently works a physically demanding job all day and gets home fairly late. It’s the first time in his life he has nights where he can fall asleep fairly quickly by 10pm. I will add that he still has the crutch of putting a movie or music on his laptop and setting it to stay on for 2 hours before turning itself off. This is his way of circumventing his mind’s tendency to become overactive and keep him up for hours in addition to the delayed onset. I’m sad for him, having had to deal with this for so long. Really, he’s tried everything. So sustained physical activity throughout the day worked for both of us independently, most of the time, plus for him the addition of something to focus on in the background while he falls asleep. Oh- and melatonin possibly helps; he is not certain but using it currently and thinking it might help some. I do wish you and your daughter all the best! and also would like to know if this is part of the ADD collection.REPORT ABUSEFebruary 26, 2011 at 6:13 am #101201
AnonymousInactiveFebruary 26, 2011 at 6:13 amPost count: 14413
Just went to the Pediatrician today. He says the sleep problem is common to ADD and recommended that we start by putting her back on the medication. (had previously been on Adderall and others — but off meds and doing well for 2 years). We will see how much difference this makes before deciding on what to do about the sleep. (already on the melatonin 5 mg ). I guess this is the way it goes into adulthood — can need medication on and off over a lifetime. I hope her grades recover — she was an “A” student.
By the way – music seemed to work against sleep for us so we stopped it. I guess it can go either way.REPORT ABUSEMarch 5, 2011 at 12:40 pm #101202
AnonymousInactiveMarch 5, 2011 at 12:40 pmPost count: 14413
I’ve just finished my first week on meds. At least 3 nights this week I woke up in the middle of the night with insomnia. I do have a burning issue currently that I’m dealing with but am concerned, is this possibly a spin off of the methylphenidate? I take my last dose of 10 mg no later than 6pm, actually usually around 5. I am very tired by 10:30 and am falling asleep quite normally and easily. When I wake up with my thoughts I seem less able than before to use mindfulness relaxation to fall back to sleep. Anyone else experience this?REPORT ABUSEMay 12, 2011 at 10:05 am #101203
AnonymousInactiveMay 12, 2011 at 10:05 amPost count: 14413
I’m still in the assessment phase for ADHD (#2 down, next meeting is the feedback meeting) but yesterday my ADHD specialist talked a little bit about narcolepsy (sleep disorder) and ADD. He says they can both co-exist and that he would treat the ADHD first and then deal with any residual problems from narcolepsy (if that’s what I was diagnosed with) or vice versa. Same with any other co-morbidity, I think, treat the main condition and then deal with residuals.
I had a sleep study back in 1992 but it was inconclusive and the doctor said there was no sign of narcolepsy. However my mother was diagnosed with it late in life and there is a genetic component so that’s why I got tested. The ADHD specialist suggested I might need another sleep study.
After the 2nd of two pretty sleepless nights in the last 5 days, I am desperate, so I’m calling my doc this morning to see what can be done for me. I’m pretty frustrated waiting for the outcome of the assessment process, but I can’t deal with this lack of sleep any longer.
I wake up 20 minutes to 2 hours after going to bed at night and then every hour or two hours I wake up again. I fall asleep during the daytime, not every day, but I usually feel like I’m dragging myself through the day and keeping busy keeps me from falling asleep. I can fall asleep watching a movie at home, reading a book, sitting at the computer. But when I go to bed to lay down, I can’t fall asleep. I make lots of notes of things to do, so it’s not as if they are following me to bed, I am not sure what the bleep is going on.
I’m tempted to try our portable DVD player with a very boring movie. I used to fall asleep late at night to tv movies and white noise as a teenager, but I don’t have the delayed onset disorder as far as I know.REPORT ABUSEMay 12, 2011 at 12:21 pm #101204
AnonymousInactiveMay 12, 2011 at 12:21 pmPost count: 14413
There’s an over the counter sleep aid that’s all natural. I’ve used it successfully when I’ve had problems sleeping.
But while we’re on the subject. like many people with ADHD, I have a problem with alertness, especially when driving. I haven’t nodded off yet (thank goodness) but it’s a rare occasion where I don’t have the urge to “rest my eyes” even after a few minutes of driving.REPORT ABUSEMay 12, 2011 at 12:31 pm #101205
AnonymousInactiveMay 12, 2011 at 12:31 pmPost count: 14413
I’ve had this problem since my late teens. I used to drive home from university on a major highway and pull over after a half an hour, get in the back seat and sleep. I had an alarm clock to wake me up. I am sure that once I closed my eyes on the highway and narrowly averted going off the road on a curve and that’s why I started pulling over to sleep.
Even driving only 20 minutes to work in the morning in the past, I’ve felt like I needed to pull over and sleep, even though I had a seemingly restful night. I can’t keep my eyes open, I slap my face until it hurts, open the windows in the middle of winter to freeze myself, turn the radio up full blast, drink coffee, etc. Strangely enough, root beer seems to help even though there’s no caffeine in it. Maybe it’s the sugar. I don’t have low blood sugar, though, I’ve been tested for that.
I no longer drive long distances alone because I can’t guarantee that I won’t fall asleep at the wheel. I don’t want to tell my doctor because I don’t want my driving license taken away.REPORT ABUSEMay 12, 2011 at 1:52 pm #101206
nellieMemberMay 12, 2011 at 1:52 pmPost count: 596
Just curious, when I was first prescribed meds, I started with Ritalin and the info sheet said it was for the treatment of Narcolepsy and ADHD. I thought I read one of your posts that mentioned you tried your husband’s Ritalin, if so, did you notice any decrease of the sleepiness?
Seems very worrying that you fall asleep while driving, I think you owe it to your own safety as well as those around you not to drive. Think of the consequences – far more grave than not driving.
Don’t mean to preach but I can relate to the feeling.
Years ago I was working in a field where I was up at 4 doing very physical work and would crash by 9 PM- Very uncommon for my normal late night rhythm! During the middle of the day I would sometimes have to drive long distances on a 3 lane highway and I was so sleepy that I would drift off. My brain was so sleep deprived that I thought it would all be ok if I could close my eyes for a few seconds until the sound of the bump of the shoulder of the road when the car swerved would wake me back up. I think I chose the right lane on purpose and was grateful for slower traffic so that I could “sleep” at slower speeds and didn’t need to concentrate so much! Still can’t believe that I did that and that I didn’t kill myself or someone else. The sleep deprived brain is a dangerous thing – scares me to think how many are out there all the time!REPORT ABUSEMay 12, 2011 at 2:08 pm #101207
AnonymousInactiveMay 12, 2011 at 2:08 pmPost count: 14413
I think the problem with alertness and driving is that the drive can be very dull and given that the ADHD mind is already prone to wandering, it becomes challenging to stay focused on the road, particularly if it’s one you’ve been on over and over again.
I don’t think there’s a danger of suddenly falling asleep at the wheel, but simply not finding the routine drive as interesting as other things one might be thinking about. One might even become bored and that’s where the drop in alertness can make you feel tired.
Conversely, going to sleep at night can be a challenge as my mind is often going so fast that I don’t even have complete thoughts. By reducing the worry and anxiety, it becomes easier to relax and sleep.REPORT ABUSEMay 12, 2011 at 8:47 pm #101208
nellieMemberMay 12, 2011 at 8:47 pmPost count: 596
I dunno GameGuy,
I’ve been bored and zoned out and suddenly realized that I’ve been driving on autopilot for who knows how long and can’t remember the past several miles, which is completely different from being so tired that you fall asleep. If you’ve ever done it you’d know, it’s frightening.REPORT ABUSEMay 12, 2011 at 10:37 pm #101209
AnonymousInactiveMay 12, 2011 at 10:37 pmPost count: 14413
I know that my eyes have closed, briefly, at least once while driving, and that scares the crapola out of me. GameGuy, I don’t drive long distances without my husband anymore (and long distances equals more than a 10 minute drive around town). I am definitely distracted at times when driving, probably more so than a “normal” person, though, so I’m anxious to get through this assessment process and hopefully get a resolution to the driving too. The ADHD specialist remarked on how dangerous it was for someone with ADHD to be driving untreated. I’ve had enough close calls that his remarks sent a bit of a chill up my spine.
I have also driven on autopilot too. It’s very scary.
Nellie: YES, the ritalin really helped with my sleep. I was alert all day only 10mg every 4 hours. Even when I took another 10mg in the early evening (like 6 pm), I was still able to get to sleep at night, and I slept through the whole night for the first time in a long, long time. That’s partly why I am finding it so frustrating to not have meds at the moment. Dr J here cautioned me about the risks (both legal and physical) of taking unprescribed meds.
My mom had narcolepsy (undiagnosed ADHD) and she took Ritalin and Dexedrine at different times, I guess she was trying them out at the time. But later in life she still had lots of trouble sleeping. So I am a little worried that it’s not going to help completely if I also have a sleep disorder. But I’ll wait to see what is diagnosed and recommended.REPORT ABUSESeptember 9, 2011 at 12:46 am #101210
AnonymousInactiveSeptember 9, 2011 at 12:46 amPost count: 14413
Well, I managed to find this thread again to be able to post an update.
Today I had a consultation at a sleep clinic. I had to bring a 25 page questionnaire and met with the doctor for 45 minutes. Discovered afterwards that they have cameras all over the clinic so they can watch you – not just in the sleep study suites!
He says it’s classic narcolepsy, a textbook case, and actually apologised to me that it hadn’t been diagnosed earlier in my life (sleep study 20 years ago inconclusive and I had to beg for something to help me with sleep, the sleep study doc told me to try to wean myself off it as soon as I could). He thinks there’s a possibility of some form of sleep apnea. He was very interested to hear that I’d done the ritalin experiment and said that was proof to him (along with all of the other symptoms as well as strong family history, driving issues, etc).
He marked my intake form as URGENT, and I’m booked for a sleep study on the 18th of Sept, with a daytime study the next day. Followup is again urgent, 3 weeks later or earlier if the report is ready sooner.
It was a great relief to hear his diagnosis. I thought of my late mother, who was the one who urged and aided me in investigating it 20 years ago after she had been diagnosed in late life. She would have been pleased.
The downside is that I can’t drive anymore. I haven’t been written up because I am not in treatment yet, so I don’t know what that means. My mother continued to drive even though she’d been diagnosed with narcolepsy. So perhaps it is decided by the doc on a case-by-case basis.
I’m still trying to wrap myself around the fact that the sleep doc says classic case of narcolepsy and the ADD doc says textbook case of ADD. I guess the good part is that the treatment appears to be similar, stimulant meds. Double confirmation for my family doc, I guess.REPORT ABUSESeptember 9, 2011 at 1:03 am #101211
caperMemberSeptember 9, 2011 at 1:03 amPost count: 179
My sleep issues don’t fall into the disorder category, but I was pleasantly surprised that with concerta I don’t get drowsy in the afternoon like I often used to.REPORT ABUSESeptember 9, 2011 at 2:54 am #101212
AnonymousInactiveSeptember 9, 2011 at 2:54 amPost count: 14413
narcolepsy? hmm?? Do you get the cataplexy in which you have sleep attacks during strong emotion?
About 40 minutes is my limit for driving without momentary sleep moments. maybe not so weird though? More than that and I have to pull off the road to rest my eyes (I do not have the ability to nap no matter how tired I am >_<).
I ran a solid red light in December at 2:30am and broke my pelvis in 5 places . (other driver physically fine, but had some emotional consequences ). absolutely hellish experience. I just spaced out and didn’t notice that it was red. no alcohol (of course) no cell phone. no changing the radio. . no eating. nothing… I have trouble driving at night and without traffic on the road because it is harder for me to focus. I got into a similar zone out accident 10 years ago. totaled my mom’s car, but no physical harm. I’ve had numerous close calls on the early morning drive to work (just cannot wake up) and on long highway drives.
I need a sleep study!! I’m going to ask my doc about it when I see her next month!!! (although, I’m pretty sure I do not have narcolepsy). I’ve accepted that my body is physically unable to sleep without ambien for 4 years (ie sleep in 15min intervals) (and not due to anxiety).. before that, lifetime of insomnia (mostly the takes 1-3 hours to fall asleep type with a few brief awakenings type). maybe there is another reason? and I should find an answer? My mom has similar sleeping issues (except a much less severe wind down for bed will power problem).REPORT ABUSESeptember 9, 2011 at 10:27 am #101213
AnonymousInactiveSeptember 9, 2011 at 10:27 amPost count: 14413
I don’t sleep. Well that’s an exaggeration… but its 6 30 am, and I have to be up at 930 and I’m not a bit tired, and i may stay up all night abd be fine tomorrow. I as well am not “worrying” etc I just don’t get tired every night.
I try to avoid sleeping aids as they are highly addictive (for me)
However, once I do get to sleep it is hard to wake me up. But once I’m up Im fine. I function on 4 hours most nights…this has been going on my whoele life, pre stimulant meds.REPORT ABUSE
Sleep disorders and ADD2011-02-24T05:34:09+00:00
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