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Omicron posted a topic in DiagnosisSince only about 25% of narcoleptics ever actually get an accurate diagnosis of narcolepsy, I've been wondering- were any of you been misdiagnosed before it was discovered you had narcolepsy? If you were diagnosed with anything other than what's in the poll, what were you misdiagnosed with, and how long was it before you were correctly diagnosed?
JMom posted a topic in DiagnosisHello Everyone. New member here. In December I was diagnosed with "idiopathic hypersomina" by a highly respected neurologist, who specializes in sleep disorders and directs a sleep center. I would appreciate hearing form others who were diagnosed with narcolepsy but who did not have daytime REM during MSLT or people who might have shift work disorder. My diagnoses was based on on the results of my MSLT, which followed an overnight polysomnogram preceded by 2 weeks of at-home monitoring with actigraphy watch and sleep diary. After 2 weeks of what the doc describes as "fairly regular" and "adequate sleep" at home and 7+ hours of overnight sleep with 87% efficiency in the lab, my MSLT was as follows: I feel asleep 5 times (each nap) within 7.4 minutes each time (latency) but no REM. Tests showed some "advance circadian rhythm", "no apnoea," and "no restless leg". The doctor says my case definitely indicates a sleep abnormality, but not narcolepsy, due to lack of REM during MSLT. She prescribed modafinil, which insurance denied because idiopathic hypersomnia does meet criteria for coverage for this medication. Then she prescribed ritalin, which the insurance company also denied for the same reason. I am paying out of pocket for one month of modafinil just to try it. (The university where I am a doctoral student has provided money to pay temporarily.) But this is not a sustainable solution. The problem: my Rx insurance provides NO Rx coverage for idiopathic hypersomnia. The diagnosis is simply just not in the formulary. So now I'm trying to figure out how to proceed. Now, insurance WILL cover modafinil for the following diagnoses: MLS, narcolepsy, apnoea, and shift work disorder. My sleep doc is helpful but I find it difficult to communicate with her. (When I asked her what the "next step" might be she seemed defensive and gave me the impression that she thought I was pushing her to change her diagnoses. I could be wrong. But that was my read when we spoke by telephone.) The managed care office at her practice is extremely helpful. Also, I have an exceptional relationship with my PCP who works closely with the sleep doc. I'd love to hear from anyone who might have some advice/thoughts/wise words of comfort Thanks.
TangentManic posted a topic in DiagnosisI have ADHD and have had it my entire life. I wasn't diagnosed until the last year, partially because I hid my symptoms from my doctors out of embarrassment, and partly because my parents were very anti-medication (so much so, that I had to run cross country without an inhaler despite bad asthma). I've got all the classic symptoms, and hyperfocus has been a particularly significant asset and handicap. I can remember having trouble sleeping all the way back to being a young child (6 years old or so), lying awake - which seems like typical ADHD mental hyperactivity. Till I was about 12-14 years old though, I would sleep through the night, and feel awake during the day. I'm trying to figure out if this is normal for ADHD'ers. I have a friend with ADHD and she seemed to think what I described was odd. When I was 12, that began to change. It started with my first episode of sleep paralysis, which I thought was just an exceptionally intense dream. It was absolutely terrifying, and nearly 15 years later I still remember it clear as day. A slow decline began from there, especially after an episode of mono where I slept 23 hours a day for 4-5 days - I had more and more trouble falling asleep at night, and increasing sleepiness during the day. I usually don't fall asleep involuntarily, and I didn't then either, though I did tumble out of my chair in study hall once (the supervisor was very strict about not sleeping so my head would just nod until I keeled). But when I got home, unless I went to bed at some crazy time like 4pm, I would end up with insomnia. And the cycle would repeat itself. It continued to get worse in college, and plateaued there, remaining unchanged till the present day (my sleep cycle is all over the place no matter how hard I try to keep it consistent, I usually end up on some vaguely nocturnal schedule). The sleep paralysis episodes became frequent, and I still get them several times a week, sometimes several times a night, my record being nearly 10 times in a row in under an hour. (It's absolutely exhausting.) I was lucid dreaming so much that I had to make a very deliberate effort to reduce my dream recall because I was getting panic attacks from being trapped in fully conscious dreams - it began to feel like sleep paralysis where you can move, except the whole world is a hallucination. I usually dream no matter how briefly I am asleep. I can have a vivid dream while my head bobs to the side, before the motion wakes me back up, to give some idea. I'm often afraid to go to sleep because the dreams are so intense, and the sleep paralysis frequent enough, I've stayed up for 2-3 days at times to avoid it, but I really try not to do this as it only makes the sleep paralysis worse - I'm only delaying the inevitable. It's like I can sleep, and I can sleep very easily, but I can't really control when, and if I miss the bus (so to speak) then the result is insomnia. If I go lie down when I feel a wave of delirium come (which usually takes at least 10-15 minutes to develop, though I could be off as I haven't actually made any effort to time it) I will fall asleep almost instantly, and if I wait for it to pass it will take much longer, often over an hour. If I do succumb to a nap, even if it's only a minute long, I'll feel physically different, like my mind is buzzing, or my skin is tingly somehow - hard to describe accurately - but the result is severe insomnia, hours and hours of just lying there. Though maybe I am sleeping randomly while lying there, I had an ex tell me she once saw me sleep with my eyes open. Supposedly I thrash around a lot too. I sleep like I'm dead sometimes, impossible to rouse no matter the scale of the ruckus, and will get really pissed if anyone tries to disturb me (I have no recollection of it). I'll have these periods where I'll be unable to sleep more than 5 or 6 hours before I wake up, and I'll wake up exhausted and delirious but I won't fall back asleep, so I just get up out of frustration. Invariably I end up struggling to stay awake at random times throughout the day. How tired I feel has little effect on how quickly I fall asleep. Then there will be a period where I can't seem to get enough sleep. Usually if I have trouble falling asleep I can stay asleep, and if I have no trouble falling asleep I have trouble staying asleep. I've sat reading something I found thrilling, and I couldn't stop nodding despite having had a full 8 hours the night before - stomping my toes, pinching myself, shaking my head like I'm insane, trying to stay awake, and still unable to keep my eyes from crossing, my head from nodding, etc. Literally impossible. It passed after an hour or two, I didn't think I'd slept at all and I thought I'd been working continuously but I noticed that the timestamps of two of the documents I was working on were two hours apart, when they shouldn't have been more than 5 minutes apart. So there's almost two hours that went missing, and I was in a library on a public computer near a research desk, and sleeping is definitely not allowed there, so I couldn't have just napped on the keyboard. I'm wondering if that was an episode of "automatic behavior." I did it once behind the wheel over a decade ago and it ended in a terrifying high speed spinout. I haven't owned a car since... The thing that makes it difficult is that I've had so much insomnia problems in my life, that I have trouble believing it could possibly be narcolepsy. And it's not like I'm collapsing every couple hours, it's usually just once or twice a day that I feel intensely sleepy, and I can usually fight through it (or so I think, maybe I am sleepwalking through it?). But, here's the stickler: I've had cataplexy symptoms before. I think in most cases it's been subtle enough I probably missed it, where if I'm upset or stressed I sometimes feel weak or clumsy, and sometimes if I'm laughing a lot I'll wobble a bit and bump into things, feeling mildly unsteady. That has other possible explanations though. Maybe it's normal, I don't know. One time I was dealing with a very scary individual I was living with, and I thought he may have been planning on trying to kill me (turned out he was) - a few times I got really weak after dealing with him, and one time as I walked away my knees and everything turned to jello and I crumpled to the ground in seconds. I fell like a bag of bricks. I recovered in just a few moments enough to get up and leave. The thing that always seemed so strange was I didn't faint - I was fully conscious throughout the entire episode, no dulled hearing, no grayed out vision. I've fainted before so I know what that's like. Now I'm reading that cataplexy is almost diagnostic of narcolepsy, so that really makes me wonder. I had an EEG done years ago - I don't have epilepsy. If I had a brain tumor I'd be dead by now, and if I had a stroke I'd have had some serious problems that would be hard to miss. Sorry for writing so much, but I felt like anything less would be too little information given all my questions. There's a lot of symptom overlap between narcolepsy and ADHD (boredom leading to sleepiness), so it's really confusing. Any insight would be GREATLY appreciated! Thanks!!! P.S. To clarify, I have one question I really want answered: Is this normal for ADHD? Also I'm not really looking for replies that just say I should see a doctor - I know I should, and I do genuinely appreciate the concern, but I'm very much interested in answers that address more than that.
Hi guys! Only my second post, but I enjoy reading through these forums. I have not been officially diagnosed with narcolepsy. Since I was a wee bit teen (I am 31 now) I have struggled with fatigue and sleep issues primarily NES. When I take the Narcolepsy self quizzes it's pretty darn high. I fall asleep in meetings, after lunch regardless of what I eat, and pretty much am miserable after 2 PM. I use to take naps in my car and under my desk at work. I can't even go shopping for more then two hours without feeling incredibly fatigued-phew! My original sleep study showed nothing, but I am doing a follow up with a sleep specialist as he only looked for apnea. I have also done the whole kit and caboodle of thyroid, vitamins, GI, allergies, anemia, lymphnodes, act. I have always had depression by my new Psychiatrist recently diagnosed me with ADHD. I think I am primarily PI. Is there anyone else who is diagnosed with both? Maybe even SCT? I know they can contribute to fatigue more. Just curious what your experiences were and how you they impacted you. Which one did you get diagnosed first? What treatment options work well for you? I am wondering if my ADHD could be causing me fatigue although everyone says no.