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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 35. This is the beginning of the thread.
Posted by Princess Artemis on June 19, 2001, at 0:11:58
That's what the neurologist and psychiatrist both said, although never to me, only to family.
Is this even possible? My movement trouble is pretty severe, and as I understand it, the psych assumed a great deal when he talked to my mother about it.
He assumed I knew what the withdrawal effects of Paxil were because I looked them up and not because I had them...maybe he meant I looked them up and then manifested them rather than had the symptoms and then did the research. This seems to me to be a rather wild conjecture...I mean, surely I'm not the only one who has begun having severe symptoms that decided to figure out what they were...(I'm rather irritated by this assumption he made without even asking me about it.)
He also assumed I had researched movement disorders before I started manifesting symptoms rather than the other way around. He told my mom my 'movement disorder' was too far off the severe end of the spectrum to be real. In otherwords, I couldn't have TD because my TD was too severe to be TD and thus I must be 'making it up.'
According to the neurologist what my disorder is called is chorea athetosis, which he believes the stuttering to be also. (He did a zillion tests and said they all came back in the normal range, so he thinks it's psychosomatic too >:P .)
So...does anyone know or even heard of someone developing chorea athetosis in all limbs and trunk and face as a psychosomatic syndrome?
Personaly, as I know how this has developed in me, I am positive it is Paxil induced movement disorder. The start of this whole adventure was the precise moment I attempted to taper off Paxil. Plus, the psych's reasons for thinking it's psychosomatic hold water the same way a sieve does; I'm having no bizarre stress in life...going back to college to get a master's and credential in special ed. doesn't seem like a gigantic psychological chrisis to me.
Any opinions? Anyone ever heard of someone mentally conjuring up such a severe movement disorder? Is there anything in the literature?
Princess Artemis, who is not making this up.
Posted by kid_A on June 19, 2001, at 0:28:29
In reply to Psychosomatic Tardive Dyskinesia?, posted by Princess Artemis on June 19, 2001, at 0:11:58
pardon me for being ignorant possibly, but I don't think you can get TD from an SSRI, only from an antipsychoctic... like geodon/zyprexa et al... I don't doubt you are having withdrawl symptoms, but probably not TD. Someone please correct me if im wrong...
Posted by Andy123 on June 19, 2001, at 0:56:42
In reply to Re: Psychosomatic Tardive Dyskinesia?, posted by kid_A on June 19, 2001, at 0:28:29
> pardon me for being ignorant possibly, but I don't think you can get TD from an SSRI, only from an antipsychoctic... like geodon/zyprexa et al... I don't doubt you are having withdrawl symptoms, but probably not TD. Someone please correct me if im wrong...
I think I saw a woman (on some show like 20/20) who had a really bad movement disorder that apparently was caused by SSRI's.
To the lady who has TD symptoms - I think its awful that your neurologist has passed the buck on to you by chalking it up as a psychosomatic illness. Maybe I'm wrong here, but I thought that SSRI's in general caused some antagonism of dopamanergic pathways.
I'm not sure why your doctors think this is caused by your having read about TD... Didn't they consider that you had also read that it is antipsychotics (and not antidepressants)that cause TD?
Posted by Princess Artemis on June 19, 2001, at 1:09:09
In reply to Re: Psychosomatic Tardive Dyskinesia?, posted by Andy123 on June 19, 2001, at 0:56:42
The psychiatrist was fully aware that Paxil can cause movement disorders, but for some reason he felt it wasn't in me.
Why? No clue. All I can think of is preconcieved notions (i.e. once a nut always a nut). I honestly don't know.
The neurologist knows I know about the neuroleptics. He suggested Haldol to help with the twitches and I was so surprised I stopped my random movements and stared at him like his nose had just fallen off!
kid_A: SSRI's can cause TD. It's popping up in the scientific literature more and more. It's just not widely known.
Posted by stjames on June 19, 2001, at 1:34:23
In reply to I don't know what they were thinking., posted by Princess Artemis on June 19, 2001, at 1:09:09
kid_A: SSRI's can cause TD. It's popping up in the scientific literature more and more. It's just not widely known.
James here....
Its always been reported in adverse reactions, but quite uncommon. The problem is that movement disorders are also "naturally occuring", that is to say that people not on AP's or AD's do get them. In general one would not expect AD's to cause movement disorders as AD's don't effect dopamine directly. Dopamine is key to movement disorders, hince the well known problems with AP's and TD.
If you think these docs are wrong about this, I would get another consult.
James
Posted by Sulpicia on June 19, 2001, at 1:53:56
In reply to I don't know what they were thinking., posted by Princess Artemis on June 19, 2001, at 1:09:09
> Have you looked at the WeMove web site?
Excellent info on movement disorders including most recent important
research.
I'm sure you already know this but one reason that pdoc *may* think TD
is not med related is the timing -- tho rare, it usually happens after
a good chunk of time on the med -- I *think* there is even a report of
TD with initial dosing but I'm certain that it was haldol & co. and NOT
SSRIs. TD more often than not remits after the drug is withdrawn. Have
you found examples of TD at cessation? I'm guessing that this sort of backward
pattern of onset is part of pdoc's thoughts.The important point, which is easily lost in anger and recrimination, is that
you get better. So the pdoc thinks it's psychogenic -- so what? You're suffering
whatever the origin. How does he propose to treat you? I *might* grab a trusted friend
and take him/her along and demand that the pdoc get off his duff and treat you.I discount the advice of the neuro regarding haldol -- either this was a joke or he thought
you were actively psychotic: either way he seems to be a nitwit.
I hope you're better soon.
S.
Posted by Princess Artemis on June 19, 2001, at 10:23:49
In reply to Re: I don't know what they were thinking. » Princess Artemis, posted by Sulpicia on June 19, 2001, at 1:53:56
I'll go see what that WeMove is about.
I know that ultimately it doesn't matter what they think as long as they treat it. Psych is helping me taper of the Paxil, slower this time (although because he thinks it's in my head, he first proposed an 8 week taper, which is what got me in all this trouble in the first place...he wants to go faster than I do.) He gave me some Klonopin too for when the chorea got really bad.
I've been on Paxil for three years and am thoroughly dependent on it (yes that's right GSK :P ) I've only seen this psych once and it was to get him to help me off the Paxil, which he's doing.
Still...I wonder what's more common; TD or pretending it's TD?
Posted by Sulpicia on June 19, 2001, at 14:53:15
In reply to I'll have to look..., posted by Princess Artemis on June 19, 2001, at 10:23:49
> If you by chance do have TD of psychogenic origin it does NOT mean
you are pretending. If any doctor told you that psychogenic=pretending
you should flee -- and realize they are clueless.
A somatoform disorder [aka conversion disorder] is nothing less than
a physical response to an emotional experience that is overwhelming to
the person at the time. At a basic level the disorder functions as a safety
valve to protect the individual. Tho I'm not a profession, I can tell you that
it's not voluntary.
I've been in contact with a woman whose son developed seizures of psychogenic
origin in response to a protracted custody dispute, and a six y/o can no more
*read up and fake* seizures than I can fly.
There is good info about somatoform disorders on the American Psychiatric Association web site and
probably here too under Dr. Bob's links.
I'm sorry about the nasty paxil withdrawal. A friend had a relatively easy withdrawal using the paxil
elixer -- she was able to decrease precisely, as little as by 1 mg if need be. Perhaps this might help
you stay comfortable?
And why on earth is this so earthshattering to your pdoc???
sending good thoughts,
S.
Posted by Princess Artemis on June 19, 2001, at 15:47:33
In reply to Re: I'll have to look... » Princess Artemis, posted by Sulpicia on June 19, 2001, at 14:53:15
It just feels like they're saying it's all in my head, and discounting any physical cause (like Paxil, which DOES cause TD sometimes) because I've had depression before.
Wanna know the great gigantic huge stressor in my life that the psych says caused this? I started taking night classes to get a teaching credential.
Yep. That's it.
I've done college before so I know what it's like. I'm feeling no overwhelming emotional trouble. The most traumatic thing that's happened to me this year is an aborted attempt to get off Paxil, which started me into this whole mess to begin with.
As for the liquid Paxil with 1mg taper...that's what I wanted. But the psych, who has known me for an entire 45 minutes (I went to him specifically to get off Paxil) refused to perscribe that because he feels it will play into my "deep seated desire to stave off independence."
That's what he thinks caused my debilitating movement disorder. A fear of independence. And he knows this after speaking with me for 45 minutes about my physical problems.
The reason I wanted the sloooooooow taper was because I'm up to my eyeballs in symptoms anyway, why would I court more? I want to be extra cautious.
Honestly, I can't see why it would be psychosomatic as opposed to drug induced. It doesn't make any sense to me. Is it more common to get psychosomatic chorea than it is to get drug induced chorea?
Nevertheless, the psych did honestly think I read about the symptoms then started subconsiously to manifest them. He didn't even ask if I had looked up the symptoms.
I am trying to find info on psychosomatic stuff just so I know what that's all about, even if I think it's extrememly unlikely. Thanks for the leads.
Posted by Sulpicia on June 19, 2001, at 16:21:31
In reply to True., posted by Princess Artemis on June 19, 2001, at 15:47:33
> As for the liquid Paxil with 1mg taper...that's what I wanted. But the psych, who has known me for an entire 45
minutes (I went to him specifically to get off Paxil) refused to perscribe that because he feels it will play into my
"deep seated desire to stave off independence."That's what he thinks caused my debilitating movement disorder. A fear of independence. And he knows this after
speaking with me for 45 minutes about my physical problems.Change doctors NOW, even if you go into debt to do so.
Something is very wrong here.
Head for the nearest university affiliated hospital and call their
dept of psychiatry. DON'T bash the former pdoc [initially]: simply, and calmly, say that you need a second opinion consultation
on an urgent medication problem and ask for whoever has SSRI/depression/psychopharmacology experience and an appointment available
soonest.
You need not suffer like this nor waste energy being pissed [rightly so] rather than feeling better.
S.
Posted by Willow on June 19, 2001, at 16:51:52
In reply to True., posted by Princess Artemis on June 19, 2001, at 15:47:33
> It just feels like they're saying it's all in my head, and discounting any physical cause (like Paxil, which DOES cause TD sometimes) because I've had depression before.
-My father has severe TD caused by older antipsychotic medications. If I'm correct you described yours being in your arms and legs, there's another name for this.
As my psych says, we don't understand everything about the human body & mind, and how they work.
What I think they are trying to say is that it is similar to "butterflies" in your stomach. Instead of feeling the anxiety or stressor, you are getting the movements.
> Wanna know the great gigantic huge stressor in my life that the psych says caused this? I started taking night classes to get a teaching credential.
>
-The one time I saw a psychiatrist he claimed the "problem is that she has three children." I never went back to him. For myself any form of stress good, bad, physical, or psychological will make my symptoms worse. There was no major stressor that started it.>
> is an aborted attempt to get off Paxil, which started me into this whole mess to begin with.
>
> As for the liquid Paxil with 1mg taper...that's what I wanted. But the psych, who has known me for an entire 45 minutes (I went to him specifically to get off Paxil) refused to perscribe that because he feels it will play into my "deep seated desire to stave off independence."I think psychiatrists aren't very good with the human psyche. The next time you get a prescription ask the pharmacist for the liquid form.
>
*Is it more common to get psychosomatic chorea than it is to get drug induced chorea?
>
-Psychosomatic symptoms are the most common reasons for doctor visits, everyone gets them.
> I am trying to find info on psychosomatic stuff just so I know what that's all about, even if I think it's extrememly unlikely. Thanks for the leads.- Beware when you read up on them, that they'll mostly be in a negative tense. Doctors like to quanitative measurements and this doesn't fit. And mostly I would have to say that MDs make this condition worse.
Just my opinions.
Best of luck!Willow
Posted by Willow on June 19, 2001, at 16:56:07
In reply to Re: True. » Princess Artemis, posted by Sulpicia on June 19, 2001, at 16:21:31
> > As for the liquid Paxil with 1mg taper...that's what I wanted. But the psych, who has known me for an entire 45
> minutes (I went to him specifically to get off Paxil) refused to perscribe that because he feels it will play into my
> "deep seated desire to stave off independence."
>
> That's what he thinks caused my debilitating movement disorder. A fear of independence. And he knows this after
> speaking with me for 45 minutes about my physical problems.
>
> Change doctors NOW, even if you go into debt to do so.
> Something is very wrong here.
> Head for the nearest university affiliated hospital and call their
> dept of psychiatry. DON'T bash the former pdoc [initially]: simply, and calmly, say that you need a second opinion consultation
> on an urgent medication problem and ask for whoever has SSRI/depression/psychopharmacology experience and an appointment available
> soonest.
> You need not suffer like this nor waste energy being pissed [rightly so] rather than feeling better.
> S.
Posted by stjames on June 19, 2001, at 17:12:07
In reply to Re: True. » Princess Artemis, posted by Sulpicia on June 19, 2001, at 16:21:31
DON'T bash the former pdoc [initially]: simply, and calmly, say that you need a second opinion consultation
> on an urgent medication problem and ask for whoever has SSRI/depression/psychopharmacology experience and an appointment available
> soonest.James here...
I second this. Reguardless, even if this is psycosomatic, calling it "in your head" is wrong. It is happening for a reason, and this needs to be treated. Another opinion will make the cause more clear.
James
Posted by Princess Artemis on June 19, 2001, at 18:48:02
In reply to Re: True., posted by stjames on June 19, 2001, at 17:12:07
None of them said "It's in your head" per se, but that's what it means...and both docs refused to exhaust all possible physical problems before calling it a psychiatric matter.
I dunno. Maybe they just don't like the fact that Paxil can cause my problems and thus refuse to accept it as a possibility.
Another psychiatrist's opinion would likely be the same, as it would take a strong doctor to admit that their favorite medicine could do this to someone. Regardless, I would take a dim view of anyone who would try to tell me the psychiatric reasons (if there are) of my movement disorder within one visit.
::sigh::
Posted by Princess Artemis on June 19, 2001, at 20:10:35
In reply to Re: True., posted by Willow on June 19, 2001, at 16:51:52
> -My father has severe TD caused by older antipsychotic medications. If I'm correct you described yours being in your arms and legs, there's another name for this.
What's it called? The neurologist called it chorea athetosis...which is in every stinkin' part of my body. Most commonly my left hand, but the left side of my face is also common. The worse it gets the farther down my body it goes, down to my toes, and it includes my trunk. Sometimes it's accompanied by a VERY uncofortable feeling in my back that almost forces me to move. Not nice, I don't like it. Some times I breathe in gasps when I get the tense kind of movements. I make random noises on occasion too.
And I'm sending out a gigantic *THWAP* to the psych who thought her problems were her kids. Bad psych, no cookie for you.
Posted by Willow on June 19, 2001, at 20:55:26
In reply to Me and my dance. » Willow, posted by Princess Artemis on June 19, 2001, at 20:10:35
Your symptoms sound more like mine then my father's. What tests had they done? The sleep clinic I went to called it "periodic limb movements" and "restless leg syndrome." These drugs can cause rls so I can't see why the withdrawal couldn't cause it. Anxiety does make it worse. What does your family doctor say?
Here is a link to the "WeMove" web site http://www.wemove.org/rls_rlswc11_19_98.html
If the problem is psychological it may be easier to treat if it just started suddenly and you never had symptoms before.
Keep in touch,
Willow
Posted by Sulpicia on June 19, 2001, at 21:10:31
In reply to Me and my dance. » Willow, posted by Princess Artemis on June 19, 2001, at 20:10:35
> And I'm sending out a gigantic *THWAP* to the psych who thought her problems were her kids. Bad psych, no
cookie for you.
I *love* it. Entirely appropriate for some clinicians -- never considered a rolled up newspaper.
I really wish I had the training to explain somatoform disorders better but I don't. Can you ask on psycho-social?
My only experience with this sort of thing: in grad school we take comprehensive exams -- we study 18 hours a day for
a year and sit 12 hours of horrible exams. The examiners as a rule have memories like elephants and big mouths -- it's a
horror. Several of us needed new eyeglass prescriptions but one colleague developed a somatoform disorder -- she went blind.
This was not volitional in any regard.
What the pdoc said to you about paxil and independence issues is akin to reading tea leaves unless you were huddled in the corner
screaming at your parents at the same time -- the whole thing is nuts.
Just find a clinician to treat you -- you need assistance to stop the paxil and recover from the movement disorder -- regardless of
its origin.
Keep the rolled up newspaper handy tho.
S. :) :)
Posted by Jane D on June 19, 2001, at 22:30:28
In reply to True., posted by Princess Artemis on June 19, 2001, at 15:47:33
> Wanna know the great gigantic huge stressor in my life that the psych says caused this? I started taking night classes to get a teaching credential.
>
> Yep. That's it.
>
> I've done college before so I know what it's like. I'm feeling no overwhelming emotional trouble. The most traumatic thing that'sStressors don't have to be caused by emotional conflict. Going to night school can be demanding physically. At the very least, your schedule has changed. You're probably losing sleep some of the time to finish schoolwork. I've finally learned that I can't afford to do that very often even when I like what I am doing.
One thing confused me about your account. Why was your doctor speaking to your family instead of you? This would upset me greatly.
Finally I agree with all the other advice that you should get a second opinion. Good luck.
Jane
Posted by Princess Artemis on June 19, 2001, at 23:54:46
In reply to Re: Me and my dance. » Princess Artemis, posted by Sulpicia on June 19, 2001, at 21:10:31
I've always got the paper handy! I've been dealing with psychs of varying degrees of competence for 10 years. I don't hesitate to swat when swatting's needed ;)
Maybe I'll ask on the Psycho-Social once I'm done being mad at the psych for saying all this junk and assuming so much.
I don't personally think he's right about the diagnosis, but I'll look into it to see what it is. Can't hurt to be informed.
Posted by Princess Artemis on June 20, 2001, at 0:01:32
In reply to Re: Me and my dance., posted by Willow on June 19, 2001, at 20:55:26
All told, between the GP and the neurologist, I have had a CAT, MRI, brain SPECT, spinal tap, blood tests of all stripes, and then more blood tests.
They all came out normal...or so the neuro says...I have also been having headaches almost daily on the right side of my head, and he said that was probably because the brain SPECT showed a little over activity on that side. This was after he said the scan was normal, so it's possible there were other things in the other tests that fit within the normal range.
When the neuro was doing the spinal, he had a larval doctor in to watch, and I over heard him explain to the baby doc that my movements and stuttering were chorea athetosis.
I did talk to a psychiatrist over the phone who's had a lot of experience in drug-induced disease and he said it sounded like tardive dyskinesia. The was off the record of course.
So...I'm pretty much trying to sort it all out.
Posted by stjames on June 20, 2001, at 2:06:50
In reply to Tests, tests, and more tests. » Willow, posted by Princess Artemis on June 20, 2001, at 0:01:32
Benadryl is usually first line treatment for TD, as it is OTC. You might consider trying it to see if it helps.
James
Posted by SalArmy4me on June 20, 2001, at 8:27:46
In reply to Re: Benadryl, posted by stjames on June 20, 2001, at 2:06:50
Agreed, Benadryl 50 mg is a good treatment for RLS.
> Benadryl is usually first line treatment for TD, as it is OTC. You might consider trying it to see if it helps.
>
> James
Posted by Willow on June 20, 2001, at 13:45:55
In reply to Re: Benadryl » stjames, posted by SalArmy4me on June 20, 2001, at 8:27:46
http://www.mlists.net/judson/3-meds.html
Here is a link to a site about medications which can cause RLS. I have a fairly constant runny nose, so I've used the non-drowsy and other antihistamines in the past. Then by accident I came across something that mentioned that they can cause symptoms that I have, and since not taking them I have been somewhat better. It is hard to say though what has caused improvement because I've been doing a number of things regarding the symptoms.
Princess
Are you working too on top of the school?Willow
Posted by Cam W. on June 20, 2001, at 13:54:22
In reply to Re: Benadryl, posted by stjames on June 20, 2001, at 2:06:50
Sometimes Benadryl is not recommended for long term use as it can wipe REM sleep and this can cause disrupted sleep patterns (eg. morning sedation), if used too much. - Cam
Posted by Maraschino on June 20, 2001, at 14:08:53
In reply to Tests, tests, and more tests. » Willow, posted by Princess Artemis on June 20, 2001, at 0:01:32
> All told, between the GP and the neurologist, I have had a CAT, MRI, brain SPECT, spinal tap, blood tests of all stripes, and then more blood tests.
>
> They all came out normal...or so the neuro says...I have also been having headaches almost daily on the right side of my head, and he said that was probably because the brain SPECT showed a little over activity on that side. This was after he said the scan was normal, so it's possible there were other things in the other tests that fit within the normal range.
>
> When the neuro was doing the spinal, he had a larval doctor in to watch, and I over heard him explain to the baby doc that my movements and stuttering were chorea athetosis.
>
> I did talk to a psychiatrist over the phone who's had a lot of experience in drug-induced disease and he said it sounded like tardive dyskinesia. The was off the record of course.
>
> So...I'm pretty much trying to sort it all out.
None of the tests you listed will rule out a drug-induced movement disorder. In fact, if you're experiencing involuntary movements, a normal MRI would support the diagnosis of a movement disorder. There are many neurologists who specialize in treating movement disorders (mostly in cities), and I'd seek a consultation with one of them if I were you.Whatever it is, I think it'll be reversible with proper treatment.
Good luck.. I think you'll be fine.
Maraschino
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