26 posts in this topic

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.  

 

 

 

 

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I think if you have a sleep disorder, it would be causing the ADHD like symptoms, not the other way around. After all, how can you focus when you never get a good night's rest?  :(  I have seen ADD like symptoms emerge in myself as the N has gotten worse. Especially, since intense concentration usually causes a sleep attack, my mind has sort of learned to avoid thinking too hard on any one thing. In my opinion, which admittedly doesn't mean much, ADHD is one of the most overused diagnoses on the planet. There are a million different problems that can impact your focus, so I think many times docs just throw that diagnosis out there in laziness and end up just treating the symptoms of a larger issue. That and the way parents use it as an excuse to shove powerful psychotropics down their kids throats to make them act up less really make me have a dim view of the ADD/ADHD diagnosis.

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Ha!  I would agree with you.  I have most of the symptoms, but not the hyperactivity.  I am just trying to pinpoint why the heck I am the way I am lol.  It's truely amazing how little help doctors give.  Thankfully I have found a couple good ones recently.

 

Thanks for your help!

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I saw an episode of Dateline ... last week, I think? They were discussing various sleep-related issues, including cases where someone has fallen asleep while driving, wrecked their car, and killed someone.

 

Another thing they covered was children diagnosed with ADD/ADHD. Several cases have been found where these kids actually have sleep disorders, and when those sleep disorders get treated, the supposed ADD/ADHD disappears. If I remember right, they were focusing on childhood sleep apnea, and interviewed one family whose child was diagnosed with ADD/ADHD, but was later found to have sleep apnea. When he started using a CPAP, all of the ADD/ADHD symptoms disappeared. The same may well be true for adults--the results of the sleep deprivation caused by the various sleep disorders can look a lot like ADD/ADHD, but once the sleep disorder is properly treated, the ADD/ADHD-like effects disappear or are greatly reduced.

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Oh how insightful!  I have read that before, but figured since my PST was ok there was no connection.  NOW that I have learned there is another test for sleep disorders perhaps that is the answer.  

 

I hate the ADHD medicine I am on.  One would think stimulants would be rather convivial, but they are not!  Plus they don't even really help.  I was not hyper to begin with.  All I do is hyper focus now on topics such as my fatigue or whatever else captures my attention.  

 

Ah the brain :)  

 

Thanks for the info-I will look up that story!

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I've been looking like mad, trying to find it. I'm pretty sure it was an episode of Dateline, quite possibly an old one being replayed. My mother found it one day and recorded it for me ... and, of course, I deleted it after I watched it. It involved a young man who was in jail after he fell asleep driving and caused a wreck that killed 2 people (or was it killed 1 and injured 1?). They also did a segment about a mother whose daughter had been killed by someone who fell asleep at the wheel (different case), the bit about kids with ADD/ADHD and the link to sleep apnea, and a segment about a kid with Kleine Levin Syndrome. Now, if only I could remember what it was called! If I can find it, I'll let you know.

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Ah-HAH! Found it! Not Dateline, but 48 Hours! The episode appears to have originally aired in April of 2001, and is no longer available on the CBS website, but you may be able to find it elsewhere. It has certainly been shown in reruns since then, since I just saw it a week or two ago. The synopsis is at http://www.cbsnews.com/stories/2000/05/30/48hours/main200597.shtml. Oddly, it looks like the URL incorporates a date in May 2000, though I can't find any evidence that this particular episode aired before 2001 ... and the synopsis itself is dated Feb 2009.

 

These people are weird, with their dates all screwed up ... BUT it was 48 Hours, possibly now being shown under the title 48 Hours: Hard Evidence, and the episode was called Sleep Tight.

 

In googling it, I've seen some evidence the episode might be available online from some other sources, since it is apparently no longer available from CBS, but since I'm at work, I can't check them.

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Hey that's so nice of you!  Thanks so very much!  No worries I am a google master.  I am sure it's on youtube somewhere!

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I was diagnosed with ADHD about two years ago.  I don't know my predominant type, but I would venture to say inattentive.  

 

 

The doctor who initially suggested I had narcolepsy said that it was possible that I don't have ADHD and that many of my symptoms are related to narcolepsy.  Now since the MSLT, he isn't totally convinced I have narcolepsy.  I still don't know the full results of the MSLT or PSG, but I do know my doctor follows very textbook narcolepsy MSLT results.  

 

 

I take Ritalin when I'm at work and school.  It helps keep me more focused and awake.  It does not help with my other symptoms (SP, HH, vivid dreaming, occasional limb weakness, EDS) and it isn't perfect, but life is better with Ritalin for sure.

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Well that's good-I find Vyvanse provides some resolve for about 5 hours and then I crash.  My depression is 5 times worse though.  

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I think sometimes stimulants cause depression because in those brief moments of alacrity, we truly realize how limited we've become by our disorder. My roommate has a theory that most suicides actually occur when successful treatment is found for psychiatric issues, because of this. Narcolepsy is more than a psychiatric disorder, but I think the same logic applies.

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I think Death Rabbit is right -- when I started taking Ritalin, I was like, "Is this what it feels like to be normal?"

 

When people who don't need Ritalin or other stimulants take them, they feel like super heroes.  When people who need stimulants take them, it lets the function as a "normal" person.  When you realize that something neurologically isn't normal, but you get a few hours of close-to-normalcy, it may cause depression.  I know I have struggled with it.

 

 

Also, ADHD and depression/anxiety are closely linked, if not part of the disorder.

 

If you also have narcolepsy or other major sleep problems, sleep deprivation causes depression.

 

Side effects of most stimulants also involve depression.

 

 

Stimulants are not without risks.

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Oh for sure guys.  IDK if I have narcolepsy.  They didn't test for it.  I am seeing the sleep doc again soon.  All I know is I feel like the fatigue I have has ruined my careers and life.  It's not a normal fatigue.  It's almost like I am missing a vital nutrient if that makes sense.  Maybe it is from MS or Lupus or who knows what.  Working my way down the list.

 

Yah Stims cause me depression.  Which is strange, because I use to do a lot of Coke in my younger days and I never got depressed.  The withdrawal was completely different.  The stimulants literally kick my buttocks!  

 

I think you are right.  Feeling 'normal' was such a blessing, but it also caused me to want it again oh so very badly.  My anti-depressant worked for a couple months and then stopped.  I know most do this eventually, but I was hopeful.  I was back to feeling the way I always had.  What's the point in living when your miserable?  It's a hard challenge.

 

Hopefully more research will prevail new and effective treatments.  There is so much we still don't know especially about the brain!

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When I took the sleep tests I was only one nap off from a diagnosis of Narcolepsy. My sleep specialist told me how ever that he is certain that I have N seeing as how I have most of the symptoms including mild Cataplexy, the SP and night terrors. I've been treating the N for over a year now, and about a year in I spoke to my specialist about seeing a psychiatrist for some depression symptoms (among other attention and mood symptoms.) When I saw the Psychiatrist, she explained to me that I don't have enouh of the childhood sypmtoms to be diagnosed, but she belives I have Adult ADD (I'm 24, 25 in June.) I was diagnosed however with a case of Mild Depression.

 

The N can certainly cause the attention symptoms of the ADD / ADHD. If you are feeling sleepy or tired, it's hard to focus. I know for me it's very wearing as well when my mind feels like it's racing, and so I wear out from the thinking... It's a visicious cycle.

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When I took the sleep tests I was only one nap off from a diagnosis of Narcolepsy. My sleep specialist told me how ever that he is certain that I have N seeing as how I have most of the symptoms including mild Cataplexy, the SP and night terrors. I've been treating the N for over a year now, and about a year in I spoke to my specialist about seeing a psychiatrist for some depression symptoms (among other attention and mood symptoms.) When I saw the Psychiatrist, she explained to me that I don't have enouh of the childhood sypmtoms to be diagnosed, but she belives I have Adult ADD (I'm 24, 25 in June.) I was diagnosed however with a case of Mild Depression.

 

The N can certainly cause the attention symptoms of the ADD / ADHD. If you are feeling sleepy or tired, it's hard to focus. I know for me it's very wearing as well when my mind feels like it's racing, and so I wear out from the thinking... It's a visicious cycle.

Sorry I just saw this.  That's BS about the childhood diagnosis.

 

They are and have been in the process of separating "types of ADHD."  Not everyone is hyperactive as an adult OR as a kid.  If you do a simple search on it it's pretty well documented.  My psychiatrist specializes in it and when I told her, hey these meds don't help like others, it's because I was not hyperactive as a child she laughed.  

 

I know there is some debate about it though.  But I must say using meds to help with some of those symptoms has been incredibly beneficial.  If your anti-depreseant doesn't work try a doc who has more information about ADHD.  Also Wellbutrin is an Anti-D to show to help with symptoms.

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I didn't find that Wellbutrin helped with focus, plus I had moderate sleep interruptions with it.  The medication that helped me most during the day with focus was Prozac, but I still fell asleep during the day with it and my nightly vivid dreams turned into nightly vivid terrors.    That is just my experience with those medications, though.  I liked Wellbutrin for mood.

 

 

I still think that my days would be more fruitful and focus improved slightly if I could actually sleep well at night.

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Yes you are probably right about that!  Sleep is pretty helpful.  Yah, I am surprised they gave you Prozac.  There are other alternatives that help activate rather than make one drowsy.  

 

Ugh, I see my sleep specialist next week.  She ran the PSG study but didn't recommend any follow up.  I am praying she has some ideas, because I have no idea why I am so tired.  I am seeing my 5th specialist!  Plus I am afraid I will fail the MSLT.  I couldn't even sleep during the PSG.  My mind new it had to sleep so it didn't.  

 

Ah the brain the brain

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Yes you are probably right about that!  Sleep is pretty helpful.  Yah, I am surprised they gave you Prozac.  There are other alternatives that help activate rather than make one drowsy.  

 

Prozac is actually fairly common to prescribe for PWN it seems. Even though it can cause drowsiness it can be very effective for cataplexy.

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Prozac is actually fairly common to prescribe for PWN it seems. Even though it can cause drowsiness it can be very effective for cataplexy.

Oh really?  Learned something new.  I don't have cataplexy.  I just know it increases Serotonin more then others which increase your drive to eat and sleep.  

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Oh really?  Learned something new.  I don't have cataplexy.  I just know it increases Serotonin more then others which increase your drive to eat and sleep.  

 

There are several antidepressants that can be used to help with cataplexy, hypnagogic hallucinations and sleep paralysis. Prozac and the tricyclics are among those that are most commonly used. They work by suppressing REM. C, HH and SP are all caused by REM intruding into the wakeful state. I take Protriptyline at bed time (a tricyclic antidepressant) both for my narcolepsy symptoms, and because I have REM related hyponea.

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There are several antidepressants that can be used to help with cataplexy, hypnagogic hallucinations and sleep paralysis. Prozac and the tricyclics are among those that are most commonly used. They work by suppressing REM. C, HH and SP are all caused by REM intruding into the wakeful state. I take Protriptyline at bed time (a tricyclic antidepressant) both for my narcolepsy symptoms, and because I have REM related hyponea.

Would you have any suggestions on finding help in diagnosing sleep ailments?  Man, I am sick of being tired.  It's been 8 years.  sleep at work have to nap daily, blah blah, same stuff you guys have heard.  My PSG showed nothing, but I didn't sleep all night since I was freezing and it was noisy (and I never go to bed at nine.)  I think I would fail the MSLT because as soon as I am suppose to sleep my brains says no. I am following up with the guy who read my sleep study, but he has all bad reviews and works with pulm stuff primarily.  

 

Any advice?  I am so scared I will never get help.

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Would you have any suggestions on finding help in diagnosing sleep ailments?  Man, I am sick of being tired.  It's been 8 years.  sleep at work have to nap daily, blah blah, same stuff you guys have heard.  My PSG showed nothing, but I didn't sleep all night since I was freezing and it was noisy (and I never go to bed at nine.)  I think I would fail the MSLT because as soon as I am suppose to sleep my brains says no. I am following up with the guy who read my sleep study, but he has all bad reviews and works with pulm stuff primarily.  

 

Any advice?  I am so scared I will never get help.

 

My first sleep doctor was a pulm as well, in fact the entire practice was nothing but pulms. I ended up going back to my PCM to get a new referral to a better sleep center that had better doctors with better a broader range of training.

 

The first doctors were treating me as idiopathic hypersomnia, and completely ignoring my REM related hyponea. The new doctor looked at the same test results, and after taking a more thorough history diagnosed narcolepsy. He was also concerned about the rem related hyponea that the pulmonologists didn't even mention to me. 

 

A good sleep specialist is going to understand that insomnia is part of many sleep disorders, even sometimes narcolepsy. The sleep center is at fault as well for not controlling the temperature to suit you better, and keeping the noise down. I had no real problem falling asleep for my PSG or my MSLT, but the EEG they used was SO LOUD. I am sensitive to ultrasonic sounds, and the hum from the leads that were just above my ears was maddening. It forced me to sleep on my back during the MSLT naps which then led to them turning into 20 minute sleep paralysis sessions. It is a sad truth that most narcoleptics have to spend a decade and several doctors searching for a diagnosis.

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Yeah, especially if you have anxiety, insomnia is going to be a problem, even if you are dog tired due to N. Plus, many of the stimulants can remain in your system enough to prevent sleep, even long after they've outlived their therapeutic effect. Another reason I'm staying away from the stuff these days.

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Yeah, especially if you have anxiety, insomnia is going to be a problem, even if you are dog tired due to N. Plus, many of the stimulants can remain in your system enough to prevent sleep, even long after they've outlived their therapeutic effect. Another reason I'm staying away from the stuff these days.

 

F my life lol....Yah I have trouble sleeping now, but at least for now I can stay awake during the day.  When I don't take them on the weekend I am reminded how bad it was.  

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My first sleep doctor was a pulm as well, in fact the entire practice was nothing but pulms. I ended up going back to my PCM to get a new referral to a better sleep center that had better doctors with better a broader range of training.

 

The first doctors were treating me as idiopathic hypersomnia, and completely ignoring my REM related hyponea. The new doctor looked at the same test results, and after taking a more thorough history diagnosed narcolepsy. He was also concerned about the rem related hyponea that the pulmonologists didn't even mention to me. 

 

A good sleep specialist is going to understand that insomnia is part of many sleep disorders, even sometimes narcolepsy. The sleep center is at fault as well for not controlling the temperature to suit you better, and keeping the noise down. I had no real problem falling asleep for my PSG or my MSLT, but the EEG they used was SO LOUD. I am sensitive to ultrasonic sounds, and the hum from the leads that were just above my ears was maddening. It forced me to sleep on my back during the MSLT naps which then led to them turning into 20 minute sleep paralysis sessions. It is a sad truth that most narcoleptics have to spend a decade and several doctors searching for a diagnosis.

 

Hey thanks this is very helpful.  My PCD is of no help.  I should find a new one so they can help point me in a direction.  I will drill him tomorrow.  I just paid for my sleep study-wow over $1000 to know nothing.  Not cool.  

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