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Dr. Bob is Robert Hsiung, MD,
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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
Posted by bimini on August 15, 2005, at 19:27:05
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by ed_uk on August 15, 2005, at 3:45:17
Ed, I sure would. I asked to try another anticonvulant but Doc gave me the option of adding Strattera or Wellbutrin, replace Concerta with Adderal or Ritalin. I opted for just scaling down Concerta, keep Provigil. Monitor BP, pulse, temp.
High dosage of stimulants caused arrythmia and tachycardia, got sent to the hospital for ischemia evaluation. I'm opposite profile for heart attack, LDH 61, no diabetes, 112lb, 168cm, fit and toned. EKG's were all abnormal, TIA's were ruled out. Pulse and bloodpressure do their merry own thing with or without stimulants, but with Concerta it got extreme. Can a cardiologist diagnose seizures from EKG's?
bimini
Posted by ed_uk on August 16, 2005, at 5:49:28
In reply to Re: Can Narcolepsy ADHD Co-exist?? » ed_uk, posted by bimini on August 15, 2005, at 19:27:05
Hi,
Why is your doc so resistant to the idea of trying another anticonvulsant?
>Can a cardiologist diagnose seizures from EKG's?
No - you'd need an EEG.
Kind regards
~Ed
Posted by bimini on August 16, 2005, at 11:44:18
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by ed_uk on August 16, 2005, at 5:49:28
> Why is your doc so resistant to the idea of trying another anticonvulsant?
>Not just one, but two Neurologists didn't feel an EEG was necessary. I was told the gaps are panic attacks and given AD's which made it worse. My present Doc is certified in both Neurology and Psychiatry, that makes three Neuros steering away from ruling our seizures. I gave up for now :o.
What I do believe is that in my case anticonvulsant's undesirable side effects outweigh the potential benefit, if I can fudge my way through life without control it is better in the long run. (If I don't shut off suddenly and permanently that is. That then will be understood as sudden cardiac arrest and not as status epilepticus) I don't know why the head is disconnected from the body when it comes to medical care.
bimini
Posted by ed_uk on August 16, 2005, at 12:06:04
In reply to Re: Can Narcolepsy ADHD Co-exist?? » ed_uk, posted by bimini on August 16, 2005, at 11:44:18
Hi,
>What I do believe is that in my case anticonvulsant's undesirable side effects outweigh the potential benefit........
But didn't Lamictal help?
~ed
Posted by ed_uk on August 16, 2005, at 12:07:32
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by ed_uk on August 16, 2005, at 12:06:04
.......but didn't Lamictal help?
Perhaps another anticonvulsant would help as much as Lamictal without the side effects.
~ed
Posted by bimini on August 16, 2005, at 12:20:48
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by ed_uk on August 16, 2005, at 12:06:04
> But didn't Lamictal help?
Hi,
yes Lamictal was great. I told my Neuro I would try Lamictal again too I liked it so much.
I meant the undesirable side effect of anticonvulsants provoking psychosis in people with complex partials, besides slowed functioning. Lamictal didn't appear to slow functioning for me, I felt like I had more energy.bimini
Posted by ed_uk on August 16, 2005, at 15:49:16
In reply to Re: Can Narcolepsy ADHD Co-exist?? » ed_uk, posted by bimini on August 16, 2005, at 12:20:48
Hi,
I was wondering whether Trileptal might be similarly effective.
In what way did you benefit from Lamictal?
~ed
Posted by zeugma on August 16, 2005, at 15:53:56
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by bimini on August 14, 2005, at 20:12:17
Hi B,
I relate to this completely. Especially about the dislike of propaganda... when communication is so difficult, why waste valuable signal time with meaningless and destructive bullsh*t?
I feel like I have an allotted amount of signal time, which is why I conserve my energy as carefully as possible to avoid becoming excessively drained before my designated 'crash days' (usually Sunday where I barely get out of bed to go to the bathroom).
I do not feel coherent off medication. It is as if my head is full of broken glass that reflects random glints of light. On medication, I feel like I have a facsimile of a 'user illusion' (term from some book that tries to show our mental lives aren't real- thesis is false, but useful in explaining my lack of said life) but not much of one. I have a semblance of a self, in my better moments.
provigil gives me extreme dry mouth. I thought Strattera was bad, but my tongue literally feels like a withered plant on modafinil. It is the reason I'm on Ritalin now, to get me through this crappy stretch where I have to take an antifungal to ward off the mouth infections that i am vulnerable to on this drug. Ritalin has an inadequate half-life and doesn't treat enough target symptoms. I am looking for optimal treatments, not ideal ones. And stimulant side effects are not well tolerated by me. Unlike other classes of meds, I do not develop tolerance to any side effect I experience on a stim.
My sleep doc was very interested in whether I had a seizure history. I don't, if you except the times I would dream I was flailing in agony on my apartment floor with a violent pain in my head and trying to reach the phone to call 911 for an ambulance. I would tell myself that when I awoke I would reach the phone I would call the ambulance (the pain was that intense, and I also fully knew that I was dreaming. I lost the 'user illusion' when it comes to dreams a long time ago). Then I would wake in bed, with a residual migraine, but safely in bed nowhere near the phone. Nortriptyline is very good at preventing these kinds of attacks, hence I believe this is not some weird variation of nocturnal epilepsy.
Living without user illusions, though- the guy who wrote the book is full of it, if it were true everyone would feel this way.
-z
Posted by ed_uk on August 16, 2005, at 16:19:16
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by zeugma on August 16, 2005, at 15:53:56
Dear Z,
Is it time to try Dexedrine?
Kind regards
~Ed
Posted by zeugma on August 16, 2005, at 16:27:29
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by ed_uk on August 16, 2005, at 16:19:16
Hi there Ed,
I think the reason pdoc doesn't want to try Dex is because Dex has more potential of interaction with TCA. I know we've discussed this before, all sources I dredge up say MPH is better with TCA than Dex or Adderall. Also, considering the severe appetite suppression I have had with pemoline and MPH (I'm on a low dose of Rit that is inadequate, but am having significant loss of appetite anyway) and the fact that said sources all agree that AMPH is worse than MPH or pemoline from an appetite point of view... well, if you can convince me that my sources are wrong, then I will broach the idea to my pdoc, who appears to have been convinced independently that my sources are correct.
Regards,
z
Posted by ed_uk on August 16, 2005, at 17:55:38
In reply to Re: Can Narcolepsy ADHD Co-exist?? » ed_uk, posted by zeugma on August 16, 2005, at 16:27:29
Hi,
>.........if you can convince me that my sources are wrong, then I will broach the idea to my pdoc, who appears to have been convinced independently that my sources are correct......
I'm not saying you're wrong - but you won't know whether Dex is a good med for you unless you try it.
Regards
~ed
Posted by zeugma on August 16, 2005, at 18:24:30
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by ed_uk on August 16, 2005, at 17:55:38
Dex might very well be good for me. I know my pdoc asked me if I had ever tried Dex after I had no response to Rit after a good while at a reasonable dose. then, as you know I began to respond- much like an AD response in that respect.
Have you heard many stories about Dexedrine causing dry mouth? That may seem like a trivial concern, but my mouth is in serious pain! And I've tried OTC remedies, Biotene Orajel, no help, totally intractable. Are there any prescription meds for this condition?
-z
Posted by bimini on August 16, 2005, at 23:23:48
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by ed_uk on August 16, 2005, at 15:49:16
Lamictal started to mellow the phase outs. I adhered a bit better to the here and time became fuller. I was less exhausted.
This is what I function like any day:
I may drive two or three blocks and not notice much of what I did. My daughter told me I took a left turn on red, I didn't know I was driving the car!
Avoided driving for a while but keep getting yelled at by everybody, psychiatrist included who calls it phobia of driving. I just go missing in my 'fog' every now and then at random. Not provoked by anything I can tell.
I watched an airplane above skipping a considerable stretch of sky, that is a rare moment of me getting direct feedback from the environment like that. Most of the time I just have a vague fuzzy feeling, start a crescendo of yawns, or things don't look familiar anymore, I get confused.
Vision therapy had me do these hand/eye coordination routines, or looking through red/green filters, that gave me instant feedback on onset and duration of input shutting down. I'm there, but half of me is out to lunch.I'll ask about Trileptal and Topamax next appt. Thank you Ed,
bimini
Posted by bimini on August 16, 2005, at 23:53:51
In reply to Re: Can Narcolepsy ADHD Co-exist?? » bimini, posted by zeugma on August 16, 2005, at 15:53:56
> my head is full of broken glass that reflects random glints of light
How poetic Z. reminds me of Leonard Cohen's "there is a crack in everything, that's how the light gets in". I often think of that song, that is just how I understand what it does do. A little crack letting in a sneensy bit of light, the reflection is of something opposite. The whole process of opinion doesn't get filtered through the translating the reflection to true form. Yeah true from whose perspective...
Dry mouth with Provigil-----oh yah--big time. It doesn't go away with drinking buckets of water, it isn't thirst I guess. I call it cardboard tongue, blechhh.
> Living without user illusions, though- the guy who wrote the book is full of it, if it were true everyone would feel this way.
I'm not sure what 'user illusions' are.
I think everybody busies to occupy and fill the time to prevent noticing illusions. If one stares us in the face we pretend it wasn't so, just lying to ourselves and fixing up to make whole, whatever we think whole is, always comparing with the potentially faulty base experiences and memories. Amateur human I am, and life is short and shorter.bimini
Posted by ed_uk on August 17, 2005, at 4:54:14
In reply to Re: Can Narcolepsy ADHD Co-exist??, posted by zeugma on August 16, 2005, at 18:24:30
Hi Z :-)
>Have you heard many stories about Dexedrine causing dry mouth?
Dry mouth and dry throat seem common with amphetamines :-(
>That may seem like a trivial concern, but my mouth is in serious pain!
It doesn't seem trivial at all!
>Are there any prescription meds for this condition?
There are (cholinergic) tablets to stimulate saliva production eg. pilocarpine (Salagen) and cevimeline (Evoxac).
The manufacturer of pilocarpine suggests caution in......'underlying cognitive or psychiatric disturbances. Cholinergic agonists, like pilocarpine hydrochloride, may have dose-related central nervous system effects.'
Sugar-free chewing gum and saliva substitutes can sometimes to relieve xerostomia.
~ed
Posted by ed_uk on August 17, 2005, at 4:55:33
In reply to Re: Can Narcolepsy ADHD Co-exist?? » zeugma, posted by bimini on August 16, 2005, at 23:53:51
>>my head is full of broken glass that reflects random glints of light
>How poetic Z.He's an excellent writer.
~ed
Posted by ed_uk on August 17, 2005, at 4:59:06
In reply to Re: Can Narcolepsy ADHD Co-exist?? » ed_uk, posted by bimini on August 16, 2005, at 23:23:48
Hi B,
>I'll ask about Trileptal and Topamax next appt.
I'd recommend Trileptal. Topamax is renowned for causing cognitive side effects.
I'm very surprised that your pdoc wants you to drive.
Kind regards
~Ed
Posted by tybekofu on August 31, 2005, at 7:02:03
In reply to Re: Anything can co-exist, but Narcolepsy is rare, posted by NARCOLEPTIC on August 7, 2005, at 20:56:27
I thought I was the only one! I'm a mother of four small kids, three of which have ADD/ADHD. Three years ago I was diagnosed with narcolepsy, and earlier this year, with ADD. I'm desperately searching for some answers to help me function. To hear someone else out there is going through what I am, helps me face another day. Drugs such as Ritalin and Concerta I've taken for ADD have "knocked me out". Thus rendering the Dexamphetamines I take for narcolepsy, inaffective. Can't seem to find a funky mix, any suggestions?
This is the end of the thread.
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