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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 25 of 43. This is the beginning of the thread.
Posted by NARCOLEPTIC on August 4, 2005, at 22:11:14
Are there variants of narcolepsy like varying degress subtypes??
Posted by willyee on August 5, 2005, at 5:57:43
In reply to Can Narcolepsy ADHD Co-exist??, posted by NARCOLEPTIC on August 4, 2005, at 22:11:14
I had a visit to a nuero once and we discussed that,and yess he said there was sort of "levels" of severity,nevertheless if u are officialy narcoleptic u are entitled to xyrem,one of the best anti-anxiety/anti-depressants *IF* used correctly.
Posted by med_empowered on August 5, 2005, at 8:31:39
In reply to Can Narcolepsy ADHD Co-exist??, posted by NARCOLEPTIC on August 4, 2005, at 22:11:14
Just based on the few people with narcolepsy I've known, and the little bit of stuff I've read about it, it would appear that there are levels of severity. Narcolepsy is commonly associated with varying degrees of depression--usually mild, but not always--that may both result from the disorder AND make the disorder harder to deal with. Antidepressants work OK on the depression; tricylics like Pamelor seem to be pretty popular for taking care of that. Anyway, some people with narcolepsy can take 1 200mg Provigil in the AM and function just fine...on the other hand, I've read case reports where up to **180 mgs** of dexedrine were required just to keep the person functioning at an "OK" (still sub-optimal) level. As for Narcolepsy co-existing with ADHD...I dont think there's a *correlation*, but the two disorders aren't mutually exclusive; so, yeah, one could have ADHD along with narcolepsy. Usually, though, when something like that happens, the physician treats disorders in order of their severity (it seems arbitrary to me, but thats how they do it). So...step #1 would be addressing the narcolepsy. If that goes well, the patient would then be considered for treatment of the ADHD after they'd been functioning for a while. The problem, as I see it, with treating ADHD and narcolepsy at once is that both conditions typically require use of stimulants. Since narcolepsy is a chronic condition, tolerance to the stimulants is a major issue in treatment...if you up the stims to deal with ADHD, you run the risk of getting more side effects (which, if you're doing high-dose stimulant therapy could put you at risk for amphetamine-psychosis) AND you accelerate the tolerance process. I guess Provigil and/or Straterra could be used, but the success w/ ADHD symptoms with those meds are lower than with the old-school stimulants. Assuming side-effects were OK, I imagine you could first try an anti-depressant treatment for the ADHD...its not ideal, but theoretically you could pump up the action of the amphetamines AND treat depressive symptoms AND maybe help the ADHD. Wellbutrin and high-dose Effexor are sometimes used for ADHD...Cymbalta also seems to be catching on (its new and shrinks love new toys...whether or not these uses have any basis in *fact* or proven efficacy remains to be seen). Tricyclics can also be used for ADHD...I think Pamelor is the big one for that application. Theoretically, Tricyclics would boost the amphetamines...having done a TCA+Adderall combo, though, I can tell you: its rough (picture sweating and heart weirdness). Good luck!
Posted by bimini on August 5, 2005, at 9:00:02
In reply to Re: Can Narcolepsy ADHD Co-exist??, posted by med_empowered on August 5, 2005, at 8:31:39
From my brief experience in the world of med-empowerment, disorders may be no clear cut one or the other. They overlap, morph, sometimes disguise.
Depression isn't always what it seems, neither is narcolepsy.
I have trouble with attention, miss chunks that don't make it through the in-take port...these can result in behaviour that seem to fit categories, but are just the result of something else. Concerta/Provigil I found has worked for me, Lamictal was the best except for side effect, Effexor did so much of the opposite it was scary.bimini
Posted by SLS on August 5, 2005, at 9:21:59
In reply to Re: Can Narcolepsy ADHD Co-exist??, posted by bimini on August 5, 2005, at 9:00:02
Hi Bimini.
> Lamictal was the best except for side effect
What side effects did you experience with Lamictal?
- Scott
Posted by zeugma on August 5, 2005, at 14:21:18
In reply to Can Narcolepsy ADHD Co-exist??, posted by NARCOLEPTIC on August 4, 2005, at 22:11:14
There are variants of narcolepsy: some have the full-blown syndrome of cataplexy, hypnagogic hallucinations, EDS, and sleep paralysis, and others have varying combinations of the above. Plus cataplexy can be weird: it can involve full or partial paralysis, usually in response to an emotional stimulus (one narcolepsy website advises patients to "avoid strong emotion", highly practical if you are capable of such avoidance. (Best bet: stay indoors and sleep.))
I take Pamelor (nortriptyline), but it is not listed in various tomes I've consulted as the preferred treatment for cataplexy, although it does work. Desipramine is probably better in some ways for ADHD and cataplexy, though I doubt the upgrade is substantial, and nortriptyline is an effective AD for me.
200 mg Provigil will keep me awake and relatively aware of my surroundings for a good 12 hours. I needed 60 mg Ritalin for the same results and had serious cardiac problems at that dosage. Strattera works well for the ancillary symptoms of narcolepsy,(i.e., HH and sleep paralysis) and also had an odd stimulant effect, but eventually brought on extreme fatigue and dysphoria. Narcolepsy is a disorder that permeates every area of consciousness, and it is hard to say where narcolepsy ends and ADHD begins for me, especially since my ADHD takes the form of extreme inattention that is practically like being asleep anyway.
-z
Posted by bimini on August 5, 2005, at 18:48:24
In reply to Re: Can Narcolepsy ADHD Co-exist??, posted by zeugma on August 5, 2005, at 14:21:18
LOL, no problem.
(Best bet: stay indoors and sleep.)
Highly practical advise.Cataplexy? Hypnagogic? Can you direct me to a site which explains the variants of narcolepsy?
bimini
Posted by bimini on August 5, 2005, at 19:02:37
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by SLS on August 5, 2005, at 9:21:59
Sandpaper-like tiny bumps covering the entire body. Happened within about 3 hours, next day swollen lymphnodes on neck, head, underarm and groin, second day more nodes stuck out, I looked like a horned creature from Star Trek. I couldn't move my head anymore, no fever, disoriented, problem with balance, whole body pain.
That wasn't the bad rash, my body just rebelled. I called my p/doc several times but she didn't get back to me for 8 days. I stopped cold turkey on that second day of reaction.
bimini
Posted by bimini on August 5, 2005, at 19:03:47
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by SLS on August 5, 2005, at 9:21:59
Sandpaper-like tiny bumps covering the entire body. Happened within about 3 hours, next day swollen lymphnodes on neck, head, underarm, leg and groin, second day more nodes stuck out, I looked like a horned creature from Star Trek. Couldn't move my head anymore, no fever, disoriented, problem with balance, whole body pain.
That wasn't the bad rash, my body just rebelled. I called my p/doc several times but she didn't get back to me for 8 days. I stopped cold turkey on that second day of reaction.
bimini
Posted by zeugma on August 6, 2005, at 16:09:31
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by bimini on August 5, 2005, at 18:48:24
Cataplexy= paralysis accompanied by a dreamlike state intruding on a wakeful state, often triggered by emotion as noted above. Hypnagogic hallucination= dreaming at sleep onset, when one is still partially awake, and so a state where dreaming and wakeful consciousness coexist, usually unpleasantly.
http://sleepnet.com/ is a pretty good site to explore. The problem with narcolepsy is that it does mimic many other conditions, particularly epilepsy. I think that narcolepsy and certain forms of severe ADHD overlap; my personal theory is that when ADHD is accompanied by sensory disturbances (e.g., not being able to perceive simple patterns, and being very prone to 'over-stimulation') it is more likely to be accompanied by serious sleep disturbances, of which narcolepsy is the most severe.
-best,
z
Posted by utopizen on August 7, 2005, at 8:08:00
In reply to Can Narcolepsy ADHD Co-exist??, posted by NARCOLEPTIC on August 4, 2005, at 22:11:14
> Are there variants of narcolepsy like varying degress subtypes??
Narcolepsy is called by my doc as a "wastebasket diagnosis." I tried Xyrem for my sleepiness, and it left me anxiety in the AM, didn't reduce sleepiness, caused vomitting, and severe depression, as well as insomnia. It's very poorly treatable anyhow, even if you did have it.
Fewer than 150,000 people with Narcolepsy exist in the U.S. That makes it an orphan disease.
If someone thinks they have narcolepsy, without having a sleep study proving this, the odds are you don't.
You might have the very common cause of sleepiness called "sleep apnea" (which can affect you even if you're skinny because some people have small airways).
More often than not, and even if you have some sleep apnea, the major factor of sleepiness is mood disorder. Specifically, atypical depression is the likely culprit.
Narcolepsy is extremely rare, and you would know if you had it.
That said, to answer your question, SLEEP APNEA + AD/HD are very common combinations, and my pulmonary specialist (pulmonologist) treats me for both using Provigil and Straterra. He says they have a synergistic effect in patients with both.
Ignore obsessing over your disorder's name, and focus on working with your doc to get a sleep study and just take the Provigil, stimulant, and up your dose on an antidepressant agressively to rule out the possibility it's mood-related.You have a better luck at winning the lottery than getting dx'd for narcolepsy. You'd have to fall asleep in fewer than 5 minutes every two hours, staying awake for those two hours forcefully by the clinician evaluating you all day long, and you'd have to enter REM sleep within those 5 minutes.
Narcolepsy does exist, but for every one legitmate case, there's 1,000 people using it to fool themselves into thinking their sleepiness is unrelated to a mood disorder because they haven't experienced depression yet. Trust me, I did the same myself.
Antidepressants are necessary for anyone with true narcolepsy anyhow, since it's not realistic to think a narcolepetic doesn't suffer from depression because of their inability to remain alert during the day.
Posted by bimini on August 7, 2005, at 9:38:59
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by zeugma on August 6, 2005, at 16:09:31
Thank you Zeugma,
> Cataplexy= paralysis accompanied by a dreamlike state intruding on a wakeful state, often triggered by emotion as noted above.
That is also an effect of shock, comlex partial seizures and maybe more.
> Hypnagogic hallucination= dreaming at sleep onset, when one is still partially awake, and so a state where dreaming and wakeful consciousness coexist, usually unpleasantly.
I do experience dream-like visuals, intense but not unpleasant, just going into sleep. Often just a single scene, sometimes lucid dream-like. I can open my eyes, move and all and go back to continue dream.
> my personal theory is that when ADHD is accompanied by sensory disturbances (e.g., not being able to perceive simple patterns, and being very prone to 'over-stimulation') it is more likely to be accompanied by serious sleep disturbances, of which narcolepsy is the most severe.
Sleep disturbance can well be caused by electrical discharges. Depending on location of the brain storms and how they dissipate. Sure explains wild fluctuations for me. There must be a reason it ends with -lepsy.
The ADD is a by-product of over-stimulation or under-filtering. Can you find relief by overtraining/desensitizing common triggers? Can you isolate triggers?
bimini
Posted by bimini on August 7, 2005, at 9:58:57
In reply to Anything can co-exist, but Narcolepsy is rare, posted by utopizen on August 7, 2005, at 8:08:00
> Narcolepsy is called by my doc as a "wastebasket diagnosis."
I like your Doc already!
> Narcolepsy is extremely rare, and you would know if you had it. Fewer than 150,000 people with Narcolepsy exist in the U.S.
> SLEEP APNEA + AD/HD are very common combinationsMakes sense, if the brain in oxygen starved and/or deprived, that will logically result in neuropathway alterations. (Like a continuous contruction site in Florida clogs up traffic :)
> Antidepressants are necessary for anyone with true narcolepsy anyhow, since it's not realistic to think a narcolepetic doesn't suffer from depression because of their inability to remain alert during the day.
Good point. Depression arises from the frustration of ineptness. Caution when you are dealing with sodium channel gating problems? For me SSRI caused severe halluzinations and increase in dissociation.
bimini
Posted by NARCOLEPTIC on August 7, 2005, at 20:56:27
In reply to Re: Anything can co-exist, but Narcolepsy is rare » utopizen, posted by bimini on August 7, 2005, at 9:58:57
I could never tolerate SSRI's NONE of them. They make me hyper in thought and exhausted physically. I am always sleepy, like a brain fog, its at that time that I feel extremely irritable not violent or aggressive, but just plain grumpy and unhibited; like i'd tell you anyone where to get off and dont even think twice, but in like 30 minutes I'd feel bad about it. I have a low tolerance for noise. Yet its the "white noise" from my fan that puts me to sleep. All this happens during the day. I the early afternoon I feel so sleepy, and my hands especially feel like they have no life in them. My eyes feel like they weight a thousand pounds. If i read for 5 minutes i fall asleep. It is only if what I am reading is very very interesting that I manage to stay focused. The high heat just adds to the stress. Its at night that I come alive so to speak. Its not that I want to sleep and cant, but my thoughts are clearer I can get more done I am more rational.
Everytime I eat, no matter what or how small or if its carbs, protein whatever I feel so lethargic and my chest feels like an inflated balloon and my heart rate hits 100 bpm and this lasts for 1-2 hours.
Thats what I live with EVERYDAY OF MY LIFE.
i AM 30 YEARS OLD AND I FEEL LIKE I AM 80
GOD HELP ME, I DUNNO HOW MUCH MORE I CAN TAKE.
Posted by Declan on August 8, 2005, at 0:13:08
In reply to Re: Anything can co-exist, but Narcolepsy is rare, posted by NARCOLEPTIC on August 7, 2005, at 20:56:27
Hello Narcoleptic
Do you know why your heart rate goes up after eating? Does your BP go up too?
Declan
Posted by NARCOLEPTIC on August 8, 2005, at 6:22:27
In reply to Question for NARCLEPTIC, posted by Declan on August 8, 2005, at 0:13:08
> Hello Narcoleptic
> Do you know why your heart rate goes up after eating? Does your BP go up too?
> DeclanActually my bp remains around 110/60-70
Posted by zeugma on August 8, 2005, at 18:48:40
In reply to Anything can co-exist, but Narcolepsy is rare, posted by utopizen on August 7, 2005, at 8:08:00
Antidepressants are necessary for anyone with true narcolepsy anyhow, since it's not realistic to think a narcolepetic doesn't suffer from depression because of their inability to remain alert during the day. >>
AD's are necessary too because they are anti-cataplectics.
I think virtually all diagnoses in psychiatry have an element of the wastebasket about them. And in truth, that is where a good number of those making the diagnoses belong.
-z
Posted by zeugma on August 8, 2005, at 18:56:23
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by bimini on August 7, 2005, at 9:38:59
Sleep disturbance can well be caused by electrical discharges. Depending on location of the brain storms and how they dissipate. Sure explains wild fluctuations for me. There must be a reason it ends with -lepsy.
The ADD is a by-product of over-stimulation or under-filtering. Can you find relief by overtraining/desensitizing common triggers? Can you isolate triggers?>>My ADD, as best I can tell, is a byproduct of poor linkage between my perceptual and cognitive systems. When my ADD gets bad, it's not inattention per se, but sensory unresponsiveness. Then when I fall asleep, I get hyper-responsive- the refrigerator's hum becomes deafening, and a truck driving by becomes the end of the world. And yet, if I can make it past the first minute or two of sleep, I can have the radio on, construction going on outside, and I sleep so deeply that hardly anything will wake me.
Triggers: lack of sufficient sleep. If I haven't slept enough, I become very prone to these electrical-like disturbances of sleep initiation.
Do you have a seizure disorder of some kind, if you don't mind my asking?
-z
Posted by bimini on August 14, 2005, at 10:54:46
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by zeugma on August 8, 2005, at 18:56:23
> Triggers: lack of sufficient sleep. If I haven't slept enough, I become very prone to these electrical-like disturbances of sleep initiation.
> Do you have a seizure disorder of some kind, if you don't mind my asking?
-zZ, I was deep in the woods, not lost :), but disconnected from civilization with internet connection.
Sleep deprivation to me is sleeping less than 7 hours. I will phase out once or twice an hour for minutes. I might have my eyes open but am unresponsive. At 9-10 hours sleep at night phase outs are ~ 3 to 8 a day.
I was brain injured in an accident that caused autonomic and visual dysfunction. ADD is the by-product of not beeing able to process visual input in the same automatic semiotic way and slowed processing speed of all cognitive tasks. Dysautonomia imbalances the stabilizing systems, like body temp, blood pressure, heart rate, metabolism, adrenal and thyroid regulation.
I experience simple partial and complex partial seizures. Doc's shy away from diagnosing seizure disorder for practical and political reasons.bimini
Posted by ed_uk on August 14, 2005, at 11:26:58
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by bimini on August 14, 2005, at 10:54:46
Do you take any anti-seizure medication? eg. Lamictal.
~ed
Posted by zeugma on August 14, 2005, at 14:01:11
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by bimini on August 14, 2005, at 10:54:46
> >
>
> Z, I was deep in the woods, not lost :), but disconnected from civilization with internet connection.B, I have been too, recently, but not deep in the woods, unless in a metaphorical sense :-)
> Sleep deprivation to me is sleeping less than 7 hours. I will phase out once or twice an hour for minutes. I might have my eyes open but am unresponsive. At 9-10 hours sleep at night phase outs are ~ 3 to 8 a day.
My problem is a little different. Sleep loss makes my already limited quota of attentional resources even more scarce. And then I become prone to the 'electrical' disturbances, which leave me feeling jangled, sometimes for days, depending on severity.
> I was brain injured
in an accident that caused autonomic and visual dysfunction. ADD is the by-product of not beeing able to process visual input in the same automatic semiotic way and slowed processing speed of all cognitive tasks.I process visual input poorly, and I have signs of prosopagnosia (inability to recognize faces). This is apparently also a trait of Asperger's syndrome, which my neuropsych denied I have, but I question her judgment on this matter. I also have what I call 'Scalosian syndrome'- there was an old Star Trek episode where an alien race was speeded up to the point where they could not be perceived by others, except as a high-pitched hum. Cognitively, I feel like I'm in this situation- my body is slowed down to the point where it is very difficult (as odd as this sounds) to get myself to 'pay attention' to myself. I used to cope with this by drinking lots of alcohol when I was a student, where I could slow my mind down enough to get my thoughts on paper. This led to a choice between a graduate degree and a damaged liver, as the grades I got on paper written while intoxicated were excellent but my health was in jeopardy. Provigil actually helped in this regard by slowing down my thinking. I am not sure if I will be able to continue with it however due to side effects.
>>
Dysautonomia imbalances the stabilizing systems, like body temp, blood pressure, heart rate, metabolism, adrenal and thyroid regulation.
> I experience simple partial and complex partial seizures. Doc's shy away from diagnosing seizure disorder for practical and political reasons.
>
I didn't know that. Seizures disorders are politically incorrect? Oh, the absurdities of medicine in the 21st century..-z
> bimini
Posted by ed_uk on August 14, 2005, at 16:37:13
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by zeugma on August 14, 2005, at 14:01:11
Hi Z,
>I process visual input poorly........
I often pay very little attention to what's going on around me. I'm very 'inside my own head' if you know what I mean. I find it difficult to focus on external events.
~ed
Posted by bimini on August 14, 2005, at 18:47:04
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by ed_uk on August 14, 2005, at 11:26:58
Lamictal helped a great deal until lymph node reaction forced me to stop cold. Not dxd epi, no other anticonvulsant tried.
I was pushed up on high dosage of stimulants, maybe to see what will arise from it? Psychosis or grand mal? Haven't lost conciousness, drift abruptly into altered awareness, can't comprehend speech, can't talk, loss of motorcontrol, tremors. It has been a wild ride!
bimini
Posted by bimini on August 14, 2005, at 20:12:17
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by zeugma on August 14, 2005, at 14:01:11
Z,
I was in the real woods; apparrently I saw the forest, just not all the trees. I walked into one of the elusive ones, I think, have a red and sore 'third eye' now smack in (couldn't have been more perfect if I had tried) the middle of my forehead.My thinking does go spinn off into unrelated directions, not like a process with a sequence or even a purpose. More like a jumble, a mess of memories and ideas, dreamlike fragmented, often hinting at something maybe too elusive to ponder. I get ideas of cross reference, can't communicate what I perceive. Feels kind of lonely in the crowd of cellphone-yada-yada-talkers. In this sense I relate to your speeded up aliens. I get tired with people regurgitating spoonfed propaganda. The whole process of communicating becomes useless, wish I could just upload my output to the receptive receiver, and vice versa.
I used to like a couple of glasses of wine or beer, alcohol now makes functioning much harder. Next day my hangover goes like this: I can't talk coherent and have balance trouble, can't remember anything and what I try to accomplish I mess up, like I have two left hands without thumbs. I'll usually manage to do something stupid, like maybe walk into a tree in the forest and not remember seeing the stars.
What side effects did Provigil give you?
> Seizures disorders are politically incorrect? Oh, the absurdities of medicine in the 21st century..
LOL. I think heart disease is politically correct at the moment. EEG's may be not helpful in pinpointing the locus of onset. If the seizure doesn't generalize to cause loss of conciousness and convulsions, noone wants to make a guess. I was denied an EEG but had about 6 ultrasounds of my heart. And.....I don't have to surrender my driver's licence for hallucinations so far, one doc told me to pull to the side of the road when I feel out of control. Pull what? What road? Docs are too funny.
bimini
Posted by ed_uk on August 15, 2005, at 3:45:17
In reply to Re: Can Narcolepsy ADHD Co-exist?? » ed_uk, posted by bimini on August 14, 2005, at 18:47:04
Would you consider trying another anticonvulsant? Trileptal or Depakote might help.
~Ed
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