![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 25. This is the beginning of the thread.
Posted by Dinah on July 16, 2004, at 17:18:43
What might I expect? Is there a noticeable change in how you feel? How long does it take to work? How long does it last? Is it truly a bad idea for those with tendencies to anxiety and agitation?
Posted by Racer on July 16, 2004, at 17:40:54
In reply to Apprehensively starting Provigil, posted by Dinah on July 16, 2004, at 17:18:43
So, um, how about "your mileage may vary" as a definitive answer? (Sorry, couldn't resist)
Provigil takes a couple of hours to kick in, I think between about 2 & 4 depending on your metabolism. Then it works for as long as it works and -- at least from my experience -- wears off. When I stopped taking it way back when, the only "withdrawal" sort of effect I found was a *major* increase in my depression and anxiety, but I really do attribute that to the lack of efficacy in the other drugs I was on at the time. Sure, it could have been a withdrawal thing, but when I started taking it again, it calmed my anxiety and evened out my depression a bit. Basically, once I started it again, on its own, I pretty much figured that the only real improvement I had experienced before was due to the Provigil, and not the others.
So, while it's a stimulant, I've experienced it as calming, rather than agitating. I know a couple of others here have said the same sort of thing, too, so I guess I'm unique but not all that weird. :-D Also, while we think of "speed" as making you agitated and anxious, and, of course, it can, I think a fair number of anxious folks still do well on the stimulant meds. Just a sort of straw poll, based on nothing at all scientific.
Now, Dinah, I won't try to hide it -- I like Provigil. For me, it's first drug that I've found helpful -- not in terms of remission of depression, because it hasn't done that, but in terms of making life feel tolerable to me most of the time most days -- that hasn't created so many problems for me from adverse effects that I hated being on it as much as I hated what led me to be on it, you know? So far, it's improved my digestion, made it much easier for me to function, hasn't caused any of the bugaboos: weight gain, sexual dysfunction, etc -- and seems to be a pretty benign sort of a drug. That from me -- the Grand High Poohbah of the Resistant to Taking Meds club. (I have a hard time justifying Advil for a headache, and usually don't bother until it gets so bad I can't open my eyes or move my head. After all, no such thing as a totally safe drug, right?) The only problem I've had with it is the "headache" -- which for me hasn't been so much a headache as a kinda tight feeling at the back of my head. Not nearly bad enough to bother with an aspirin, and not really painful, just a feeling like wearing a too tight cap.
I hope this does help reassure you. I do understand your hesitancy, but the good news is -- if it doesn't work out, you can just stop taking it! Would that all psychotropics were so kind to us that way, eh?
Posted by SLS on July 16, 2004, at 17:58:21
In reply to Apprehensively starting Provigil, posted by Dinah on July 16, 2004, at 17:18:43
Hi Dinah.
> What might I expect?
That might depend upon what symptom cluster you are trying to treat. What are you being treated for, and why have you chosen Provigil?
> Is there a noticeable change in how you feel?
I experienced an improvement in mood within an hour of my first dose.
> How long does it take to work?
I don't think you can group Provigil in with the traditional antidepressants when it comes to the time-course of improvement. From what I can see, there doesn't seem to be the same type of 2-4 week delay. You should notice changes during the first week of treatment, especially if you can tolerate 100-200mg initially.
> How long does it last?
My improvement lasted for only two days, after which it produced headaches, anxiety, and worsened depression.
> Is it truly a bad idea for those with tendencies to anxiety and agitation?
Not necessarily.
I doubt anyone has enough clinical experience with this drug to be able to predict with certainty how it will affect you. There are plenty of instances where a drug that produces anxiety in one person makes it disappear in another.
What else are you taking?
- Scott
Posted by gabbix2 on July 16, 2004, at 18:09:33
In reply to Re: Apprehensively starting Provigil, posted by Racer on July 16, 2004, at 17:40:54
Hi Dinah. I hope I can offer you a little comfort because you and I have had similar reactions to many drugs.. Effexor (YIKES) Wellbutrin, I know we share a hatred of sensitized Noripinephrine receptors.. We got sumo wrestler head(I'll never forget your description) from Seroquel, and we are prone to anxiety.
According to my *Super Psychopharmacologist*
Provigil doesn't act on Noripinephrine but on the histimine receptors.
I know that officially it's mechanism of action is unknown, but my P.Doc is always up on his drugs so I'm sure he's correct about the noripinephrine at least.
The first time I tried Provigil (illicitly) it did nothing for me, not nervous just thick headed and headachy-- but the second time, months later I tried it with a different A.D and it was wonderful. I felt energized and optimistic but not nervous at all, it combined with my A.D was my miracle combination actually.
Sad irony for me is of course I found my miracle
in the hospital and my G.P outside of the hospital refuses to prescribe it.. however that's another story.
And this has really been long enough (sorry)
Posted by SLS on July 16, 2004, at 19:05:14
In reply to Re: Apprehensively starting Provigil-Dinah, posted by gabbix2 on July 16, 2004, at 18:09:33
> Sad irony for me is of course I found my miracle
> in the hospital and my G.P outside of the hospital refuses to prescribe it..
Why couldn't the doctor in the hospital consult with your GP?
- Scott
Posted by gabbix2 on July 16, 2004, at 19:50:21
In reply to Re: Apprehensively starting Provigil-Dinah, posted by SLS on July 16, 2004, at 19:05:14
Thank you for your interest Scott..
My *superdoc* from the hospital is my former
psychiatrist and an amazing man, with about 18 letters after his name, he goes to bat for me still when things are tough.
However, I'm no longer technically his patient (out of the area)
He did try and went so far as to write my Dr. and my current psychiatrist a letter with his medication recommendation. Sadly I think it's nothing more than a battle of egos and I can't switch Dr's due to Canadian restrictions. So I'm stuck.
I feel like someone from the "Awakenings" who awoke from a coma only to slowly go back in.
sorry for the novel.. but
my depression is refractory too, and this has been really difficult to deal with. I'm sour graping right now and saying
"Aww the provigil would probably have stopped working anyway"Hope hope hope
S.
Posted by SLS on July 16, 2004, at 20:14:29
In reply to Re: Apprehensively starting Provigil-Dinah » SLS, posted by gabbix2 on July 16, 2004, at 19:50:21
> My *superdoc* from the hospital is my former
> psychiatrist and an amazing man, with about 18 letters after his name, he goes to bat for me still when things are tough.That this guy knows Provigil increases histaminergic neurotransmission says it all. Wow.
I wish for you better days.
- Scott
Posted by gabbix2 on July 16, 2004, at 20:28:02
In reply to Re: Apprehensively starting Provigil-Dinah, posted by SLS on July 16, 2004, at 20:14:29
> I wish for you better days.
Thanks Scott
You too, I meant to say this before, You're a special guy, People who you don't even know (like me) think often about how you are doing.And now.. back to you Dinah,
Posted by Dinah on July 16, 2004, at 22:47:33
In reply to Re: Apprehensively starting Provigil, posted by SLS on July 16, 2004, at 17:58:21
I do feel somewhat reassured.
You're right, Gabbi. I was scared it would be like Wellbutrin or Effexor.
I've been prescribed Provigil for the narcolepsy *I* don't think I have, but that the neurologist thinks is possible even though my sleep tests weren't definitive, because I go into REM sleep earlier than normal. Anyway, I hate to say it, but I'm mainly agreeing to take it because I'm curious, and because I do have periods of time when it seems very difficult for me to stay awake or get out of bed at all and my productivity really suffers. I really want to work 25-30 hours a week and I just can't manage that consistently. And from what I understand it's not like AD's so I can quit taking it when I'm hypomanic, right?
If there aren't hideous side effects from stopping, I suppose I can give it a try and stop it if I feel awful.
(I'm a hopeful lass, aren't I?)
The only psych meds I'm on are Depakote (125 mg) and Klonopin (1 mg). Although I'm reasonably certain my Glucophage has an adverse effect on my mood and generally makes me feel cr*ppy.
Now I have to decide whether or not to actually consider the CPAP machine. I think I'm too lazy to do the cleaning involved and I'll end up with Legionnaires disease or something.
Posted by Dinah on July 16, 2004, at 22:49:14
In reply to Re: Apprehensively starting Provigil-Dinah, posted by gabbix2 on July 16, 2004, at 18:09:33
Gabbi, I wish you could have super-pdoc all the time. :( I think it's disgraceful that they won't give you what works for you. Sigh.
Posted by SLS on July 17, 2004, at 6:41:29
In reply to Re: Thanks all, posted by Dinah on July 16, 2004, at 22:47:33
> I do feel somewhat reassured.
> You're right, Gabbi. I was scared it would be like Wellbutrin or Effexor.
Different is different. Sometimes, that's all the rationale you need to try something new.
> I've been prescribed Provigil for the narcolepsy *I* don't think I have, but that the neurologist thinks is possible even though my sleep tests weren't definitive, because I go into REM sleep earlier than normal.
Going into REM sleep early is one of the hallmark features of endogenous depression. I don't think it is a valid symptom to use to make a differential diagnosis between depression and narcolepsy. If that's the only thing they see, they have done nothing more than to confirm the work that has been conducted in depression research since the 1960s.
> Anyway, I hate to say it, but I'm mainly agreeing to take it because I'm curious,
Me too. It is not a bad idea to try.
> I understand it's not like AD's so I can quit taking it when I'm hypomanic, right?
Do you really get hypomanic? I didn't know you were bipolar II. When was your last hypomanic episode? What are the things you experience that distinguish you as being bipolar?
> If there aren't hideous side effects from stopping, I suppose I can give it a try and stop it if I feel awful.
Yup. No harm done.
> The only psych meds I'm on are Depakote (125 mg)
That is a worthless dosage for a bipolar if you ask me. I have an open mind, though.
> and Klonopin (1 mg).
What's that for?
> Although I'm reasonably certain my Glucophage has an adverse effect on my mood and generally makes me feel cr*ppy.
Ouch. I didn't know Glucophage could do that. That stinks.
> Now I have to decide whether or not to actually consider the CPAP machine. I think I'm too lazy to do the cleaning involved and I'll end up with Legionnaires disease or something.
Since I've got you over here on the Med board...
What is your diagnosis and why? There is so much I don't know about you.
What drugs are you taking and at what dosages?
How are the drugs you are taking right now helping?
What are your residual symptoms? What are you experiencing right now that still needs to be treated?
You don't have to answer any of my silly questions if you don't want. I won't take it personally. I do have a few more, though.
I think trying Provigil is a great idea. I wish you luck.
:-)
- Scott
Posted by Dinah on July 17, 2004, at 10:44:43
In reply to Re: Thanks all - Not finished yet... » Dinah, posted by SLS on July 17, 2004, at 6:41:29
Scott, I would never find your questions other than helpful, or mind answering them. I very much value your input.
> Going into REM sleep early is one of the hallmark features of endogenous depression. I don't think it is a valid symptom to use to make a differential diagnosis between depression and narcolepsy. If that's the only thing they see, they have done nothing more than to confirm the work that has been conducted in depression research since the 1960s.
Well, it's sort of a silly story, involving the (too my untrained eye) egos of different schools of medicine. I get what I call "involuntary naps" or "forgetting sleeps" when I'm upset - *only* when I'm upset. Sometimes just five or fifteen minutes, sometimes hours, but I *have* to take them. I do manage to get somewhere safe. My car (not driving), a stairwell, or all the way home. I happened to mention them to my migraine neurologist because one was averted by a tryptan, and she referred me to the sleep neurologist. Since I really respected her, I went. Based on that and the fact that when I'm really tired I hear background chatter as I fall to sleep (no words, just background stuff like in a restaurant) and the fact that I had sleep paralysis while on a short trial of Neurontin, and probably also an astonishing prevalence of sleep disorders on my mother's side of the family, he said that clinically I presented as narcolepsy, never mind that I didn't have any of the other symptoms. So he scheduled a sleep lab. My therapist and I think that it's just dissociation, sleep as an escape. But the neurologist said that therapists don't know anything about narcolepsy, and *all* of my dissociative symptoms were probably expressions of narcolepsy. So he had some ego involved, I think, in getting a certain result from the sleep study. That being said, I do have trouble with extreme daytime sleepiness sometimes, and I'm not really aware of being depressed.
>
> > Anyway, I hate to say it, but I'm mainly agreeing to take it because I'm curious,
>
> Do you really get hypomanic? I didn't know you were bipolar II. When was your last hypomanic episode? What are the things you experience that distinguish you as being bipolar?Officially, I'm cyclothymic. I'm happy with that diagnosis, although since I had three episodes of major depression, I've always wondered if I "fit". My hypomanic episodes are almost always, but not always, triggered by medication changes or sleep deprivation. They fall into the good sort of hypomania and the bad sort. In both I have a level of energy usually unknown to me, I get obsessed with something, I get by on 2-4 hours sleep without feeling sleepy. In the good sort, I also feel really intelligent - the me I used to be. My thoughts are clear, I can see and process several things at once, I notice things others have missed. I generally get some sort of obsessive "enthusiasm" where I spend a bit too much, but it's offset by the fact that I'm wonderfully productive, either at work or at home. The bad sorts are bad. I get hysterical over things that don't ordinarily bother me and constantly feel like *everything* is overstimulating and I want to rip my skin off. Not a pleasant situation. I take the occasional Risperdal (.25 mg) at these times. It certainly doesn't qualify as mania, but my family and friends can tell and I certainly can. Mild hypomania, I suppose.
> > The only psych meds I'm on are Depakote (125 mg)
>
> That is a worthless dosage for a bipolar if you ask me. I have an open mind, though.Well, sometimes I take 250 for migraine prophylaxis, but since it didn't do much to improve it, the doctor and I decided to stick with the 125 mg. I laughingly tell my psychiatrist that it's a placebo dose, but I *do* notice a difference when I'm off it, so I stay on it. He tells me that people process drugs differently, and it's not necessarily a placebo, but they *would* tell you that if they were giving you a placebo dose, wouldn't they. :)
It might have something to do with the fact that my liver enzymes have been elevated since the mid-nineties, when they first started testing me. They can't find anything wrong, but that would indicate a liver that wasn't functioning at top efficiency, wouldn't it?
>
> > and Klonopin (1 mg).
>
> What's that for?Ah, my beloved Klonopin. My first psych med, for anxiety and panic attacks. I've done a lot of CBT therapy work, but I still find the Klonopin helpful.
>
> > Although I'm reasonably certain my Glucophage has an adverse effect on my mood and generally makes me feel cr*ppy.
>
> Ouch. I didn't know Glucophage could do that. That stinks.
>
They don't tell you that side effect, but if you do research you can find it. And I did the research because it made *me* feel that way. My (tongue in cheek) guess is that it works by making you feel sort of crummy and not feel like eating. And punishing you horribly if you eat a fat rich meal. :)> > Now I have to decide whether or not to actually consider the CPAP machine. I think I'm too lazy to do the cleaning involved and I'll end up with Legionnaires disease or something.
>
> Since I've got you over here on the Med board...
>
> What is your diagnosis and why? There is so much I don't know about you.The sleep study revealed mild sleep apnea that is probably a major contributing factor in my nighttime panic attacks.
>
> What drugs are you taking and at what dosages?That was all of them. Depakote 125 mg. Klonopin 1 mg. Glucophage 500 mg. Lipitor 10 mg. Frova (tryptan) as needed for migraines. Risperdal .25 mg as needed (probably less than 20 times a year) for its tranquilizing effect.
My diagnoses are major depression, moderate, recurring, cyclothymia, OCD, probably some other anxiety disorder thrown in, and some serotonin related physical disorders - migraine and IBS, and diabetes :(. My therapist (who doesn't diagnose, so I don't have this diagnosis) would probably add dissociative disorder, not otherwise specified, but I tend to think of dissociation as a nifty coping skill and don't see it as a disorder.
>
> How are the drugs you are taking right now helping?Not bad. A fair compromise for effectiveness and side effects. I use therapy more than meds to control my symptoms.
>
> What are your residual symptoms? What are you experiencing right now that still needs to be treated?Hmmm.... My mood cycles are still a problem. I like the good hypomanias. But the meltdowns (sometimes, but not always, accompanied by bad hypomania) are probably my main problem. I get totally hysterical, unreasonable, nonfunctional, shaking crying etc. over some stressor that ordinarily wouldn't bother me. I'm not sure how much that's physical and how much it's a child's temper tantrum when I've had too many stressors. I handle the stressors ok, but then melt down? Or it's physical and related to the mood cycles. I'm not sure which. But it can last a week, or even longer, sometimes shorter - only a few days.
The lesser, but still important, remaining problem is my periods of low productivity. It's hard to stay awake. I'm apathetic. It's extremely difficult to motivate myself to do anything. My brain feels sluggish and stupid (and I *hate* feeling stupid). My family, neighbors, and bosses get angry because everything gets behind. It's not the crisis sort of thing that the meltdowns are, so I might not give this symptom as much weight. But if I lose my job and find it difficult to find another, I expect it'll move up the scale. Moodwise, I don't find it accompanied by any negative thoughts or negative feelings or distress.
That's probably far more than you wanted to know about my condition. :) But answering your questions was very helpful to me, because I tend not to look at the big picture. I tend to think however I'm feeling now is how I always felt. So I thank you, and think I'll print this post out as a reminder of what needs to be done. And check it with the perceptions of my family and friends as well. I'm pretty sure I'm remembering my husband's complaints correctly. (smile)
If I somehow managed not to answer any question, please let me know. And if you have any ideas I'd be happy to hear them. As I said, I have immense respect for your judgement.
I'm going to try the Provigil today so that if it has a negative effect, it won't mess up work too much. Thanks for the good luck wishes.
Posted by Emme on July 17, 2004, at 11:11:42
In reply to Re: Apprehensively starting Provigil-Dinah, posted by gabbix2 on July 16, 2004, at 18:09:33
Gabbi,
That must be *endlessly* frustrating for you not to be able to get what works for you. Will you be able to change pdocs ever...? And I can't remember what you said, but what was the miracle drug for you?
Emme
> Hi Dinah. I hope I can offer you a little comfort because you and I have had similar reactions to many drugs.. Effexor (YIKES) Wellbutrin, I know we share a hatred of sensitized Noripinephrine receptors.. We got sumo wrestler head(I'll never forget your description) from Seroquel, and we are prone to anxiety.
> According to my *Super Psychopharmacologist*
> Provigil doesn't act on Noripinephrine but on the histimine receptors.
> I know that officially it's mechanism of action is unknown, but my P.Doc is always up on his drugs so I'm sure he's correct about the noripinephrine at least.
>
> The first time I tried Provigil (illicitly) it did nothing for me, not nervous just thick headed and headachy-- but the second time, months later I tried it with a different A.D and it was wonderful. I felt energized and optimistic but not nervous at all, it combined with my A.D was my miracle combination actually.
> Sad irony for me is of course I found my miracle
> in the hospital and my G.P outside of the hospital refuses to prescribe it.. however that's another story.
> And this has really been long enough (sorry)
>
Posted by gabbix2 on July 17, 2004, at 13:10:59
In reply to Re: Apprehensively starting Provigil-Dinah » gabbix2, posted by Emme on July 17, 2004, at 11:11:42
Oh yes, frustrating, devastating really.
And just so angry, I mean why am I continuing to see a Pdoc if I've already found what works but
it's not being given to me? I can't quite believe there isn't a law or something..The last 2 years I've settled for feeling
numb as opposed to anxious and terrified and thought that was being "better". When I took the provigil I remembered what it was like to feel part of the world.. you know little things like "it's nice outside today" Or "this coffee is really good" --Those things depression slowly steals away.Anyway to answer your question, this was my second remission in about eleven years, and it was a combination of Topamax
a small dose of Paxil 15 mgs, and 100 mgs of Provigil 50 mcgs of Cytomel.My G.P suggested E.C.T rather than Provigil
WTF???? And I've never abused stimulants ever so it's not that.Well, as Slinky said "That's why the call us patients"
Good luck to you Emme, Oh, and thanks again for your link to the Corpse flower I became rather obsessed with it. I want to see one live now.
Posted by gabbix2 on July 17, 2004, at 13:16:40
In reply to Re: Apprehensively starting Provigil » gabbix2, posted by Dinah on July 16, 2004, at 22:49:14
Yeah, I wish I could have him all the time too,
it's hard to go back after having the best.
He still answers my e-mails though (Whatta guy)
I hope you have a positive response to the Provigil.
There is definitely not an excruciating
withdrawal like there is with other medications
(at least not for me) it's more like a crash that is finished within a day or two, and can probably be completely prevented with a taper.Fondly,
S.
Posted by SLS on July 17, 2004, at 13:18:11
In reply to Re: Not finished yet... » SLS, posted by Dinah on July 17, 2004, at 10:44:43
Hi Dinah.
Well, you certainly have a lot of stuff going on. No wonder your doctors are fighting! I'm afraid sleep disorders and dissociative disorders are outside my realm.
> > What are your residual symptoms? What are you experiencing right now that still needs to be treated?
> Hmmm.... My mood cycles are still a problem.
What is the periodicity of your cycles? How frequent are they? Is there a pattern? Do they occur spontaneously, or are there always triggers.
> I like the good hypomanias.
I thought the hypomanias were associated only with changes in medication or sleep deprivation. There would be no stress triggers here, right? I think there might be a problem. Which comes first, the sleep disturbance or the beginnings of hypomania? Have you ever kept a mood chart including hours of sleep?
Here's one you can use. It might be of some help to see what's going on.
http://www.psychiatry24x7.com/bgdisplay.jhtml?itemname=mooddiary
or
http://sl.schofield3.home.att.net/medicine/mood_chart_beam.pdf
It's in PDF format, so you'll need the Adobe Acrobat Reader.
http://www.adobe.com/products/acrobat/readstep2.html> But the meltdowns (sometimes, but not always, accompanied by bad hypomania) are probably my main problem. I get totally hysterical, unreasonable, nonfunctional, shaking crying etc. over some stressor that ordinarily wouldn't bother me. I'm not sure how much that's physical and how much it's a child's temper tantrum when I've had too many stressors. I handle the stressors ok, but then melt down? Or it's physical and related to the mood cycles. I'm not sure which. But it can last a week, or even longer, sometimes shorter - only a few days.
I think charting your mood will help you to see what's what. Also write down daily events as notes along with your mood ratings to get an idea if the stress triggers the episodes or the episodes determine the stress.
> The lesser, but still important, remaining problem is my periods of low productivity. It's hard to stay awake. I'm apathetic. It's extremely difficult to motivate myself to do anything. My brain feels sluggish and stupid (and I *hate* feeling stupid). My family, neighbors, and bosses get angry because everything gets behind. It's not the crisis sort of thing that the meltdowns are, so I might not give this symptom as much weight. But if I lose my job and find it difficult to find another, I expect it'll move up the scale. Moodwise, I don't find it accompanied by any negative thoughts or negative feelings or distress.
Depression has many faces. It presents differently in different people. It is not necessary for there to be present depressed mood, sadness, or negative thoughts. Apathy and loss of interest or pleasure also qualify.
http://www.mentalhealth.com/dis1/p21-md03.html
> If I somehow managed not to answer any question, please let me know. And if you have any ideas I'd be happy to hear them. As I said, I have immense respect for your judgement.
Man, I managed to fool yet another. It's amazing how far a few fancy words will go. :-)
As a layman, I would say first off that you need to be on a real dose of a mood stabilizer. Depakote 125mg just won't cut it. Have you tried Lamictal?
> I'm going to try the Provigil today so that if it has a negative effect, it won't mess up work too much. Thanks for the good luck wishes.
Go for it!
- Scott
Posted by Racer on July 17, 2004, at 14:16:20
In reply to Re: Not finished yet... » Dinah, posted by SLS on July 17, 2004, at 13:18:11
Dinah -- Scott's idea about a mood chart seems really good to me. I've been working on one for myself, and so far it's really helped me. I noticed the same thing you mentioned, about not being able to remember feeling any other way? Once I realized that, it spurred me on to put one together that worked for me. Still working out the bugs, but it's helping *so* much. If you like the idea, but don't find a chart that works for you, and would like to see mine, drop me an email and I can send you a sample. I also have an Access database I'm working on to create reports and charts from it, as well as make data entry easier, and if you've got Access I can send you a sample of what I've got there, too. (Not perfect, and the charts need to be created manually, but the charts have been WONDERFULLY helpful to me.)
Specific to the mood charts, what's helped me the most is being able to keep track of events and activities and things like dr's appts and therapy sessions and my menstrual cycle, which helps me figure out if there's a specific trigger or not. That part has been very helpful for me, because it does help weed out confounding variables.
Scott, thank you for mentioning the changing faces of depression. Again, I know that it was directed at Dinah, but once again that grapeshot managed to find another target -- and help. I, too, get the hysterical overreactions to overwhelming stress, and sometimes that's the most evident symptom of depression for me, which always leads me to wonder if I'm "really" depressed, or if I'm "faking" it somehow, or if I'm really bipolar. This despite a lot of evidence that I'm *not* bipolar, *am* depressed, etc. Somehow, reading Dinah's explanation of her reactions and your response to them finally "clicked" somehow, where none of the others did.
Thank you both.
Posted by zeugma on July 17, 2004, at 16:05:29
In reply to Re: Not finished yet... » SLS, posted by Dinah on July 17, 2004, at 10:44:43
Well, it's sort of a silly story, involving the (too my untrained eye) egos of different schools of medicine. I get what I call "involuntary naps" or "forgetting sleeps" when I'm upset - *only* when I'm upset. Sometimes just five or fifteen minutes, sometimes hours, but I *have* to take them. I do manage to get somewhere safe. My car (not driving), a stairwell, or all the way home. I happened to mention them to my migraine neurologist because one was averted by a tryptan, and she referred me to the sleep neurologist. Since I really respected her, I went. Based on that and the fact that when I'm really tired I hear background chatter as I fall to sleep (no words, just background stuff like in a restaurant) and the fact that I had sleep paralysis while on a short trial of Neurontin, and probably also an astonishing prevalence of sleep disorders on my mother's side of the family, he said that clinically I presented as narcolepsy, never mind that I didn't have any of the other symptoms. So he scheduled a sleep lab. My therapist and I think that it's just dissociation, sleep as an escape. But the neurologist said that therapists don't know anything about narcolepsy, and *all* of my dissociative symptoms were probably expressions of narcolepsy. So he had some ego involved, I think, in getting a certain result from the sleep study. That being said, I do have trouble with extreme daytime sleepiness sometimes, and I'm not really aware of being depressed.>
Hi, my knowledge of most things neurological/psychotropic is very limited, but I do know that cataplexy is sensitive to emotional triggers. That is narcolepsy. And the background chatter and sleep paralysis- we are unlucky to live in an era when psychologists and neurologists still fight over the mind, but it sounds like narcolepsy to me. The Provigil won't block the cataplexy, but it might make you feel better. It's worth a chance. I take 50 mg for ADHD and 'dissociative disorder NOS'.
>
Posted by Dinah on July 17, 2004, at 18:29:01
In reply to Re: Not finished yet..., posted by zeugma on July 17, 2004, at 16:05:29
Yeah, I think it was the chatter as I fell asleep that put him over the top in diagnosing me. I happened to see my migraine doctor before I saw him again, and she said he had put in the chart that clinically he was sure it was narcolepsy. I think he did put a lot of meaning in the sleep paralysis too, even though it only happened during the week or so I was on Neurontin.
In any case, my first day on Provigil didn't bring any hideous surprises. I need to call him Monday and check on dosing though. The bottle says one pill twice a day, but he can't mean for me to take the second one before bedtime...
Posted by Dinah on July 17, 2004, at 18:42:32
In reply to Re: Not finished yet... » Dinah, posted by SLS on July 17, 2004, at 13:18:11
I did a lot of mood charting about a year ago, but have gotten sloppy. It was really like clockwork. The meltdowns were every ten weeks or so, give or take two weeks either way. The meltdowns were followed by a stuporous period. Which was followed by a period where I was either reasonably normal or a bit thick and sleepy and apathetic, but not horribly so. The good sort of hypomanias probably don't come more than twice or *maybe* three times a year. I also charted my migraines, which had their own cycle that I can't quite correlate with my mood cycle. I can't find any correlation at all with my hormonal cycle, unless it's possibly ovulation. But that's really really iffy.
It's chicken and egg, perhaps, with the sleep deprivation. I usually see it as sleep deprivation coming first, then the hypomania. My job has a lot of deadlines, and I not infrequently have to pull an all nighter, or close to an all nighter. Which almost always perks up my mood and sometimes catapults me towards too good (or too agitated) a mood. Not good for me, I know, but I'm lousy at change. I can't see myself changing jobs.
I think the meltdowns have been spacing themselves out further lately - maybe twelve to sixteen weeks rather than eight to twelve, which I credit entirely to the twice a week therapy. That lends credence to the escalating stressors followed by meltdown theory. I think I'm nothing but a grownup with a two year old's nervous system. Try fitting *that* into the DSM! :)
Posted by zeugma on July 17, 2004, at 18:51:17
In reply to SLS and Racer, posted by Dinah on July 17, 2004, at 18:42:32
here's a pharmacagenomic study of dosing for modafinil:http://www.genomenewsnetwork.org/articles/03_02/narcolepsy.shtml
Optimal drug dose for treating narcolepsy depends on one gene
By
Edward R. WinsteadMarch 29, 2002
Researchers have found that men and women with narcolepsy have different responses to the drug modafinil. This may be due to an underlying genetic difference: Men and women tend to have different forms of a gene called COMT, which plays a role in regulating the brain chemical dopamine. Modafinil is a stimulant that modifies dopamine levels in the brain.
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©2002 The Pharmacogenomics Journal
Mehdi Tafti, of Université de Genève, Switzerland, and colleagues analyzed the response of 84 narcoleptic patients to modafinil as a function of their COMT genes. The optimal dose of modafinil was approximately 100 mg lower in women and lower in all patients with the ‘L’ form of COMT (catechol-O-methyltransferase) compared to others in the study.
The gene, which encodes an enzyme, comes in two forms—‘L’ for low enzyme activity and ‘H’ for high enzyme activity. Last year, Tafti and colleagues reported that women tend to have two copies of the L form, while males tend to have the H form. That observation was supported by the new study. Modafinil appears to be more efficient at modifying dopamine levels when the enzyme is less active, according to the researchers.
“The findings of this study constitute the first report of the use of pharmacogenetics in sleep disorders. The differences in daily dose between gender and COMT genotypes may help individualization of modafinil treatment and highlight the importance of understanding the genetic basis of variability in drug response,” the researchers write.
In the previous study, Tafti‘s group found that the severity of symptoms in narcolepsy was associated with the particular form of COMT a person had. During a sleep study, women narcoleptics with the HH genotype fell asleep twice as fast as those with the LL genotype while the opposite was true for men. The researchers concluded that the results “strongly suggested a genetic link between narcolepsy and the dopaminergic/noradrenergic systems.”
Modafinil has been used in narcolepsy treatment for over a decade in France and has recently been introduced in other countries as a means of treating pathological sleepiness. How modafinil works in the brain is not fully understood, but the drug can treat excessive daytime sleepiness without the risks of addiction and abuse that come with other stimulants.
. . .
Dauvilliers, Y. et al. Sexual dimorphism of the catechol-O-methyltransferase gene in narcolepsy is associated with response to modafinil. Pharmacogenomics J 2, 65-68 (2002).
Dauvilliers, Y. et al. MAO-A and COMT polymorphisms and gene effects in narcolepsy. Mol Psychiatry 6, 367-372 (July 2001).
Posted by SLS on July 17, 2004, at 19:18:00
In reply to SLS and Racer, posted by Dinah on July 17, 2004, at 18:42:32
Hi Dinah.
> I did a lot of mood charting about a year ago, but have gotten sloppy. It was really like clockwork. The meltdowns were every ten weeks or so, give or take two weeks either way. The meltdowns were followed by a stuporous period. Which was followed by a period where I was either reasonably normal or a bit thick and sleepy and apathetic, but not horribly so.
The common pattern found in bipolar illness is for depression to follow immediately after mania, and then by euthymia or something close to it. Your pattern, as you describe it, seems to follow this course. The key, then, is to prevent the hypomania. This might best be accomplished using a three-pronged approach:
1. Good sleep hygeine
- regular sleep schedule
- avoid advancing circadian rhythm2. Reduce psychosocial stress
- psychotherapy
- environment
- performance demands3. Usage of mood-stabilizing somatic treatments
- higher dosage of current mood stabilizer
- switch to different mood stabilizer
- combination of two mood stabilizers
- alternative treatments (omega-3, inositol)If I were a psychopharmacologist with a bias towards drug treatment, I would push hard for aggressive use of mood stabilizers. Wouldn't you?
:-)
- Scott
Posted by Dinah on July 17, 2004, at 21:40:24
In reply to Re: SLS and Racer » Dinah, posted by SLS on July 17, 2004, at 19:18:00
Chuckle. Yes I suppose I would. But since I have a mild anti-med bias, I think I'll wait and see what happens with the newest changes first. If the Provigil works, maybe I won't get so far behind on my work that I need to stay up all night. And if I get the CPAP, maybe my sleep will be better.
I don't suppose my job stress or deadlines will go down, but I'll keep using therapy as a way to keep the stress buildup low. And I suppose if things get worse, I'll consider adding more meds or increasing them. I'm still taking the 250 mg Depakote, and maybe with the Provigil I'll be able to stay with that.
Did I mention I'm not crazy about meds? :)
Thanks for all your help, Scott.
Today went fine, so I'll keep my fingers crossed on the Provigil.
Posted by Dinah on July 17, 2004, at 21:41:42
In reply to Dinah, something to look at, posted by zeugma on July 17, 2004, at 18:51:17
Posted by Dinah on July 17, 2004, at 21:42:23
In reply to Re: Thanks :) (nm) » zeugma, posted by Dinah on July 17, 2004, at 21:41:42
Thanks again everyone.
This is the end of the thread.
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