Tardive Dyskinesia & Respiratory Dyskinesia

[concdernedmom749]

My 37-yr-old daughter (adopted) was diagnosed with bipolar disorder in her teens.  She’s been on psychotropic medications for over 20 years now (starting with Stelazine, has also taken several other psychotropic medications, and finally has been on Geodon for the past 5 years).  This year she developed tardive dyskinesia of the jaw/mouth and also respiratory dyskinesia.  

Her neurologist wants her to get off the Geodon and onto Clozaril.  Her psychiatrist has been slowly weaning her off the Geodon and slowly increasing the Clozaril.  She also takes Klonopin for the jaw movements.  He also added Cymbalta for depression.  When she was on the Geodon, she functioned well, worked, was pretty stable and didn’t need an antidepressant.

She is having a hard time with this transition (it's been a couple months now).  She doesn’t feel “normal,” said she feels like her skin is crawling, she sleeps a lot during the day and is anxious about her future…wondering if the Clozaril doesn’t work, what will she be able to take.  Some days she is very thick tongued and her speech is slurred and slow, other days she’s more normal.  She has no motivation to do normal daily activities (she’s presently on long-term disability) and is starting to get a “shutting down” feeling (not wanting to leave her apartment, etc.).

We were wondering if some of these symptoms were from withdrawal of the Geodon or side effects of the new medication, Clozaril?  I’ve also read online in some chat rooms of people having awful withdrawal symptoms getting off Geodon.

Do you know of anyone diagnosed with bipolar disorder who has been able to get off all medications entirely?  I found The Road Back Program online and wondered if you knew anything about it and if people have really been successful in getting off psychotropic meds?

If not, is there any other medication that might help with the bipolar and dyskinesias other than Clozaril?
Thank you for any help you can give us.

Sincerely,
Concedrnedmom749

[Peter Forster]

Other things that I thing might be very worthwhile are -

Use of light to try to stabilize circadian rhythms
Bipolar disorder specific psychotherapies - such as Interpersonal Social Rhythm Therapy
Physical activity (not necessarily exercise)
Beginning with tiny steps on some kind of mindfulness or prayer meditation

Good luck!

[Peter Forster]

Your daughter has had a terrible time with her illness and with medications. As you know, respiratory dyskinesia is a rare side effect of antipsychotic medications. A search of the literature revealed 32 articles on this subject. The majority of the recent articles talk about withdrawal dyskinesia (symptoms developing as an antipsychotic is reduced) highlighting the complexity of treating this condition - it is presumed to develop as the result of chronic administration of antipsychotics but it may actually get worse with reduction of those medications. The only recent information about treatment options that I could find talked of olanzapine, but in general, clozapine is the gold standard atypical antipsychotic for treating patients with tardive dyskinesia of all kinds.

A Geodon to Clozaril plus Cymbalta cross taper makes sense pharmacologically, but in such cross tapers, there is often a need to make dose adjustments along the way, as what might be the right schedule for one person won't be the right schedule for another due to differences in how different people metabolize these drugs. I often find that getting blood levels of the drugs can help me figure out how to fine tune the cross-titration.

From what you say I might be inclined to think that the main problem now is undertreatment of her depression - either the Geodon has been tapered down too quickly, or the Cymbalta (or perhaps the Clozaril) has been tapered up too slowly.

There are a bunch of other possibilities, of course and I may try to add more to this posting later on.

Peter

[concdernedmom749]

We saw her doctor on Friday and he upped her Cymbalta and Clozaril.  Said he wasn't aware of any blood tests for these meds but that you might know something he didn't.  He didn't think she was tapered off the Geodon too quickly so hopefully these increases will help.

You didn't mention whether or not you have heard about The Road Back Program.  When you have time I would appreciate your comments about that.

Thank you for your other suggestions...we will pursue.

[concdernedmom749]

Thank you so much, Doctor, for your insight into this.  We are seeing her psychiatrist tomorrow and I'm going to take your response...I think the measure of blood levels is a good idea.

I would love to see any other possibilities later, if possible.  I do so appreciate your time and effort and this has been very helpful.  

Thank you!

[Jaquta]

Just from a lay perspective I wonder if the dosage of med/ meds is too high.  And maybe instead of depression they are just side-effects of the meds.  (Although given her history and symptoms it would be easy to understand someone becoming depressed).

My understanding, which isn't very great, is that a med (cogentin, I think) can be used to off-set side-effects from some other meds.

My understanding is that bipolar can be somewhat improved by psychotherapy.

Your daughter's doctors sound as though they are doing some things right.

I had a lot of respect for Dr Gould, the former doctor on the mental health expert forum.  I would try searching through some of the old posts there and see if any of the information is helpful.

The doctor here should also be able to provide some good advice.

Good luck!