ADHD Vs, Narcolepsy

It is hard to get started because I don't really know where to begin... When I was younger my mom told me how she used to find me all of the house sleeping. I would be playing with my "My Little Pony's" downstairs, and she would walk down stairs to check one me and Iwould be sleeping right next to them. I would go...gooo...goooo until I almost literally dropped for a nap.  Nothing was really said about these occassions at the time, but now reflecting back on the yearlier years of my life, I am now starting to understand, and accept the diagnosis of Narcolepsy. I always had/have  trouble sleeping at night, I was always the late owl, which could have appeared more insomnia, which i have been diagnosed as. I had some behavioral problems groing up, and i was using drugs and alcohol, around the age of 19 I went to my doctor, a pediatrition, that i highly respect, and I brought to her attention that I had trouble focusing, concentration and being untask.... Started taking Adderall it saved my life, I no longer did street drugs, I was getting straight A's things were looking up..Couple years later, i had to go to a new doctor that lived closer to where i went to college, she continued on prescribing the aderall for a year or so, but they asked fore me to get some testing down, long story short the testing results came back inconclusive.... well to me that is no a NO or a YES....she basically ******** me off my adderall and my life went to hell. Later on I got a sleep study done, and it turns out that I am narcoleptic. The adderall works good for the day, to keep me awake and motivated to get my stuff done, and at night i take ambien which helps me to sleep through the night.   I am kind of tired but i just wanted to give a really brief start to what i wish to share about and i am interested to see if anyone else... thinks like me, feels like me... got misdiagnosed like me... and get upset when people to accept the diagnoses.

lala216 lala216
22-25, F
20 Responses Nov 6, 2008

So did you really ever have ADHA? And do the adderall really keep you alert all day without feel tired and fatigued? And do you have any side effects from the adderall? Please let me know!

I take adderall and it helps me, but i see someone said they take nuvigil , i was taking that at first but had to stop because it was giving me liver problems, that medicine literally destroys your liver. so i got off of that and got on adderal, and i take it twice a day, once in the morning 20 mg and then a 10 mg in the afternoon to keep me going the rest of the day. At night im still having the issue of staying asleep but i recently just had another sleep study and found out i have sleep apnea , and it turned out that i was stop breathing 36 times in one hour, so everytime you stop breathing your body wakes you up basically,so i never went into a deep sleep , or REM sleep as they call it , so where you get rest and energy and all that stuff you get when you sleep , i was maybe getting 1 hour of it compared to the 8 hours people normally get, so just the other day i got fitted for my machine and i could tell the difference ,in that one day on the machine , so im hoping that might be and solution to one of my problems, but for others take a sleep test and have them make sure you dont have sleep apnea,and the machine is a miracle worker :)

Good lord ! You are me !!!!!! I flipped out when I just read this!..... I was like ... Uh ....when did I write this ?

Hello. I read your posts. Considering the span of years...i'm sure most of you have long gone, but it does not change the fact that I am crying right now....

I have ADD and Narcolepsy. I like to think that the ADD helps keep me awake and interesting.

When will you stop?<br />
I was the same way the body adjust so you have to take more<br />
Are you just want to stay awake or looking for the high<br />
I started to take ambien to sleep but after a while I started to sleep walk<br />
And don't remember<br />
Do any of you who are taking ambien sleep walk?

Has anything worked better than ambien for you that does not have horrible side effects but truly just knocks you out? I on rare occasions do things while i take my ambien that i do not necessary remember fully. Like hide things, clean my room (which isnt a horrible thing ha ha ) put up blinds, etc. . .

Yes there is something that works 10 times better, it's called xyrem and it's a liquid I have been on it for a year and a half with no side effects and I sleep like a baby even though I haven't found anything to help with my daytime sleepiness and fatigue I pray my doctor will find something really soon.

I want to say thank you! I too entered ADHD narcolepsy assuming nothing would come up and <br />
Here I am! I was diagnosed with ADHD as an adult (25) and narcolepsy at 32. I too don't understand<br />
How this all works. I'm on nuvigil (250mg) and Concerta (60mg) and I don't think that combo is working. It's like I feel lazy but can't shut my brain off. I'm so glad that I found this post! Good luck to everyone! And thanks!

Are you still currently on the same medication or did they switch you up?

Hi<br />
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I want to relate my narcolepsy symptoms as clearly as possible. Here goes.<br />
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As long as I can remember I've been a night owl. I crave quietness, so nights are magical and wonderful as far as I'm concerned. Mornings have been something else. Morning for me is whatever time I get out of bed and have a cup of coffee and a few bites of food. The thing is, I was never able to wake up fully. I was nominally functional for hours. It was as if I were suspended somewhere between awake and asleep. As I got older, the symptoms got worse. I'd go for days without fully 'coming to'. By this time, I was retired. I don't snore, am not ADHD, not overweight. Sleep Apnea doesn't fit my symptoms. I have experienced sleep paralysis in the past. My latest symptom is intermittant weakness first in one leg, then both at the same time. Then the weakness manifested in different parts of my body, even to an inside part of me perhaps in a specific organ (can't tell that for sure). While in the suspended state of not being awake or asleep, I am cranky, irritable, crave quietness and want no interaction with others. I am mentally alert. When I was younger, the episodes lasted about four hours after I got up. When I got to work I'd hit my stride about noontime. <br />
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All medications should be taken under the supervision of a physician. Count it a blessing, if you have or can find a doctor who is willing to work with you trying 'off label' uses for medications to treat your symptoms. What has worked for me may not work for you, but I take 37.5 mg. of Wellbutrin and 37.5 mg. of Lyrica (half a tablet of each) once daily in the morning. The Wellbutrin wakes me up. The Lyrica takes the edge off feeling irritable. In each case, they are working 'off label' at half a dose for my symptoms, with no negative side effects. When I take either of these medications at regular doses, the negative side effects are too unpleasant.

You are not alone, i have both ADHD and Narcolepsy at the same time. I'm glad you posted this because I've always thought it was such a contradiction to have both. I often describe myself as feeling "wired but tired." I fidget all the time, and am hardly ever still, yet I'm always exhausted. I am currently taking Provigil which actually is helping with both. I'm not only able to stay awake through the day, but am also able to focus more and have less trouble with distractability. I've also found diet and exercise have helped balance out both conditions. Some days are harder than others.<br />
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I went misdiagnosed from my teens to now. I was given so many medications for depression and anxiety that I didn't have a menstrual cycle for 5 months. Finally they were ready to try me on "anti-psychotics" to which my mother thankfully stepped in and said there was no way it was psychosis. It took 10 years until a sleep study confirmed Narcolepsy with an early on-set REM. My MSLT however was "inconclusive" but that was because of the ADHD not letting me sleep on command. My narcolepsy makes me crash when it wants to - luckily my sleep doctor recognized this and gave me the proper diagnosis to be medicated. I also have mild cataplexy that affects my face and arms when laughing really hard or when I'm startled. I don't take medication for it since it isn't that bad. As a teen I suffered from sleep paralysis and hypnagogic hallucinations that made me think my room was haunted (part of why they were considering anti-psychotic meds) and also experienced extremely vivid dreams. Some dreams were terrifying, others were just confusing because i thought something really happened that didn't. I suspect the ADHD caused the crazy dreams. Now that I'm grown I don't get the visual hallucinations when falling asleep, but sometimes get auditory ones. They don't bother me now that I know what they are.<br />
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Hope this info makes you feel less alone!

Hi all, I know this thread is a little old. But I'm hoping that someone can point me in the right direction. It's a bit of a long story, that starts with me and ends with my son. I had a great deal of trouble in school, staying on task, concentrating etc. In high school (12th grade) I began falling asleep in class daily, despite the fact that I got a good amount of sleep. Throughout my adult life I have always been extremely tired, but since my whole family always felt this way (although I did have one relative that had severe Narcolepsy), I just chalked it up to normal (normal for us, anyway) I was finally diagnosed with Narcolepsy at 32 years old, and was amazed to learn that many of the symptoms were things that I called normal (sleep paralysis, hallucinations etc). Fast forward to about two years ago, I began to see my son, then in third grade, struggling in school. It never even occurred to me that he was having trouble sleeping until I began to see a great deal of irritability in the morning. When I questioned him as to whether he had a hard time waking up in the morning, his response surprised me. "Sometimes I can't move when I try to wake up" This began a dialogue about other symptoms he began to describe (none of which I had ever described to him). He is now in fifth grade and we have seen several sleep specialists and neurologists. His sleep studies have not yielded much, as he did not sleep well in a hospital setting. He did have an actography, though, that did show interruptions in his sleep, several times per night. No diagnosis has been given. Knowing all this, his school sent him to be evalutated for ADHD. The doctor barely asked us anything and hardly examined my son. ba<x>sed on his school performance/evaluation, he diagnosed him with ADHD. My understanding is that ADHD is a diagnosis of exclusion, meaning you can't diagnose ADHD unless there is no other possible explaination for the symptoms. I am not comfortable with the diagnosis, ba<x>sed on the fact that it does not explain the sleep related symptoms. I'm tempted to just go with the diagnosis, because I know they'll likely perscribe adderall, and I am certain that it would help him with the symptoms. But I'm also concerned that we won't be getting to the root of the problem. Also, I don't want him labled with something that we don't believe he really has. I'm in the process of trying to find a doctor that specializes in cases like this. Any recommendations any of you may have would be greatly appreciated. Thanks

Wow, when I entered 'narcolepsy+adhd' in google search, I expected my pc to give me its typical computer-equivalent to a blank stare! I'm glad to see I'm not alone, but it seems that my problems with adequate symptom control are the same as several people here, all with no solutions. I initially tried Provigil; 10 days of Hell (spent my days w/ major headaches and feeling very hungover). Went back on Dexedrine (previously prescribed for my adhd). This controls my narcolepsy daytime issues, but adhd is still a major problem. Can't concentrate, remember where I put things, get organized, etc.<br />
Does anyone know of any developments in the hypocretin research? Initial discoveries looked promising, but I'm hoping some progress is being made. That seems to be the 'golden ticket'. I also have Restless Limb Syndrome and take Sinemet (levadopa/carbidopa). Tried melatonin in conjunction to try improve my chances at some stage 4 sleep, but it just zombified me for the next day like any other sleep promoting med. Any ideas?

Hi, I want you to know that your article and all the others on this site are a real help. I have had sleep problems all my life...I am 50 years now. I have no diagnosis, but I have experienced the same problems with the same medication you have taken. I was told that my symptoms to Dexdrine i.e. lack concentration, memory loss and in my case blurred vision; was extremely unusual. Clearly, if you have experienced the same/similar reactions then it cannot be that uncommon. If only I could get you and all the others who have wrote articles to attend my consultation then perhaps something would finally be done about my condition. The problem is that I have had numerous sleep studies but I do not always fall asleep within the permitted time slots. So, this makes me out to be nothing but a liar. I am so tired all the time, I cannot remember, I cannot concentrate and I loose coordination. I have now been passed onto a Neurologist who has an interest in sleep. I have seen him once last March 2011 and my next appoint is August 2012. In the meantime, I am left struggling every single day as I have for the previous 50 years. Are you in the UK, can you recommend anything to obtain a diagnosis or somewhere for me to request a referral to?

Leicester have been great, after doing trials for sodium oxybate 10years ago i decided to stay there,when im good yearly appointments and not so good 3-6 monthly appointments they seem to no more than other hospitals id been to. ie:- after Miss diagnosis of eperlepsy in home town, York for 2nd opinion diagnosed narcolepsey/cataplexy gave meds couple of visits n discharged as nothing else to be done. Was better than before taking anything but not great...hope this helps,if not already sorted.

I can certainly relate to these comments. I, too, have both Narcolepsy and ADHD. I just feel grateful that medicine was available. With the medication, I was able to complete my university degrees, hold a professional position, and raise a family. It continues to this day to be a fragile balance between the symptoms and the medicine's efficacy to control the symptoms, but the recent research in hypocretin or orexin (sp?) deficiency in the brains of narcoleptic patients seems very promising. The documentary, "I Woke Up in the Morgue," was enlightening. It was done by a production company in the UK and was very informative. Unless an individual has experienced the types of symptoms with which we have all coped, no one could understand. These disorders are not character disorders; they are physical malfunctions. God knows how many heroes are out there who have struggled for normalcy in spite of incapacitating symptoms.

I can empathise with your story as my husband had been diagosed with Narcolepsy 5 years ago but has since been given the diagnosis of Dissociative Disorder where he looks like he's sleeping but he is really only 'shutting down,' a bit like a tortoise. It is extremely frustrating and I amagine it is much the same for yourself. Do you also have the Cataplexy that often accompanies Narcolepsy? My husband has these collapses which we call wobblies.<br />
I really hope you can work through your troubles and find a way of coping. I would be very interested in chatting to you regarding your day to day coping stategy as it may help my husband too.

I have for the past 13 years have been complaining about fatigue. I had been to many GP's who became uninterested listening to me that was made obvious by them twiddling pencils and looking up at the ceiling. I happened on a sleep specialist because of suspected APNEA. That was corrected, but I still would get extremly sleepy most times within 2 hours of awakening. So far I have been diagnosed by my sleep specialist as a very "sleepy person" I think he suspects narcalepsy. I was started on Adderall and 2 hours after the first dose I was shocked at how I felt. Not only did my sleepiness go away, but it was like being jolted out of a deep haze. I really think something else has been going on long before perhaps more than 40 years ago. My mental abilities exploded for the first week but now I feel I am sliding back a little. The sleepyness has not returned for a little over 3 weeks since starting Adderall. I can't wait for my next appointment as I want to share this with the doctor and perhaps stop or reverse the backwards slide on my mental abilities. I am filled with optimisim about my future now. Before I was so tired I was beginning not to care.

I happen to have Narcolepsy and ADHD. My story is a bit backwards, though. I was diagnosed with Narcolepsy at age 11 after several years of frustration and have been on stimulants (first Ritalin, then switched to Dexedrine at around 19yrs) ever since. I was diagnosed with ADHD when I was 21, which is very complicated. It is believed that all the stimulants I used over the years actually changed the make-up of my brain and led to the ADHD. For now, the medication I take (Dexedrine - the others, Cylert and such, didn't work for me), only affects the Narcolepsy, so the ADHD is basically untreated. At this point in time, I'm hoping to begin taking Xyrem, which I know will treat the Narcolepsy (I was involved in one of the clinical trials) so that the stimulant I'm taking (Dexedrine) will actually affect the ADHD. It is all very confusing.

I found this topic interesting....I just did my college thesis on narcolepsy and comorbidity with other disorders....focusing on ADHD.....apparently in children narcolepsy symptoms are often similar to those of ADHD and children are often misdiagnosed....<br />
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Other than that...I feel your pain with all the misdiagnoses....I just finally got diagnosed with narcolepsy about 6 months ago after years of wrong diagnoses....and the kicker is I pretty much diagnosed myself after doing much research into my tests done and turns out I was right.....when my doctor got my test results she was really excited because she said she had never had a patient with narcolepsy before....glad I could be her first and amuse her hehe....but yea depression, bipolar disorder, ADHD, laziness, sleepy cuz I'm slightly overweight, anxiety disorder, epilepsy, etc the list goes on with things I have been told I may possibly have....but now I know what it is and it makes sense....but yes it's frustrating when doctors don't know what they're talking about and don't make much of an effort to diagnose you properly

sometimes it gets stressful because I know my life is basically based on those two pills.. Adderall XR 30 twice a day and Ambien at night. If i dont take the AD than nothin is going to get done and I can at times starting feel sad when i dont take it. Even if i dont take the ... i still DEF need ambien. that small little guy saves my life at night. Basically you take your meds everything is fine, but sometimes you wanna break. i get worried bout my health sometimes and get tired of livig pill to pill... but i do it because i know how much easier my life is and more enjoable with them.

I hope I'll remember to get back at you next week. I'm on adderall for having adhd and just got a sleep study done because my doctor thinks I have narcolepsy. I'll be getting the results soon, and it just dazzles me how is it that adhd can be mistaken by narcolepsy or viceversa.

I have narcolepsy too. I found if you find something that works, stick with it. I suggest that you pay close attention to how you feel on a daily basis. A journal would be helpful. I found out that at a certain temperature my body would shut down. It is 74 degrees F. Whenever I find myself in a room at that exact temperature, I would feel myself shutting down. I would usually have to get up and walk around or go outside. Or else I would sit and have a narcoleptic attack as I would call it. It is like your whole body is asleep but your mind is wide awake. It would last about 10 to 15 minutes. It is scary as hell if you don't know what is going on. <br />
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Anyway, hang in there. Your not alone in this battle. Take care.<br />
<br />

That must be so hard and I hope the docters look after you well