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Dr. Bob is Robert Hsiung, MD,
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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
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
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