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Q: 2 Episodes, 6 Yrs. & Still Taking Lithium
I am an Australian woman of 40 years and have only had two (albeit major)
"episodes" one of which occurred post pregnancy and one during pregnancy.
Despite what I see as a problem directly related to pregnancy hormones, I am
still taking lithium after 6 years. Do you think I need to continue taking
lithium forever?
Dear Australia --
Ah, this is a big question. (Most are, mind you; but this one really goes to the
core of what bipolar disorder is, and how when we get there we find that we
don't know enough to give good answers.) Other readers, stick through to
the end because the ending of the answer, such as it is, comes out quite
different from the beginning...
For starters, we have to take into account the
perhaps-significant email address you use, which I won't repeat here for privacy
sake, but let's say there is evidence there, perhaps, of a tendency to have a
lot to say about things, a lot of the time. As that is a bipolar symptom
(of hypomania; one of the better such markers), perhaps the history you
give of "only two episodes" misses some much more subtle
manifestations of this bipolar phenomenon.
Not that one would have to take medications for talking
a lot, of course. But you can see it raises the question: well,
suppose that on lithium the only manifestation of this bipolar thing is
the tendency to have a lot to say. If that occurred at times, but
not at others; if there were phases where even for a few days your usual
garrulous self changed into a quiet, withdrawn, nothing-to-say-about-anything
state -- then there would be evidence that something "cyclic" was
still going on despite lithium. In that case I'd be quite worried that
without lithium, something much more major would show up.
Note the "might's" and the "perhaps's".
This concern could be completely off base (for several different
reasons!). Particularly if there is no "cycling" to the tendency
to talk a lot, then there would be much less basis for this line of
thought.
Okay, that said, or supposing you just had a different
email address, then the rest of the thinking (in my view; and this is definitely
something to be worked out with your doctor, not struck out upon on your own)
would go like this: let's say there "really" have been only two
episodes, and no subtle manifestations of bipolar disorder since. Since
both episodes were associated with major hormonal changes, i.e. did not occur
spontaneously; and since nothing has happened since, I think many mood experts
would consider a very, very slow taper off while maintaining vigilance
for a return of symptoms. This might also depend on how destructive the
two episodes were, and how you're currently situated in life -- that is, can you
afford a big disruption along the lines of what you saw before. It might
also depend on how much warning you might expect to get before things got really
bad, based on your previous experience: did it creep up on you, and show
something (in retrospect) pretty obvious that you could recognize early this
time? or did it hit full-blown all of a sudden? Finally, do you have
some people around who could help you manage, and help you see the
symptoms? Are they willing to take this course?
So, those are all the general considerations I'd go
through for one of my patients in this situation (I was just counseling one of
them along these lines last week, for example). Note that we have very
little actual data to use to make these decisions, instead it's more a matter of
common sense, looking at the risks and the balancing factors, as above.
I'm sure there are mood experts who would simply say "nope, you gotta stay
on"; but that's not my style, and in the absence of data, this really is
more an issue of style, of how a patient's wishes get incorporated into the
Plan.
Finally, if you do decide -- with your doctor --
to taper off, there are some data to tell you how to do it, and that's:
SLOWLY. Very slowly. Slower than we even recognized a year
ago. One of the most conservative mood experts says "take a
year". Recently a study showed that patients were more likely to
relapse and have another bipolar episode if they had gone from a relatively high
lithium level like 0.8 down to around 0.4 than if they had been at 0.4 the
whole time. That was because the research study design took them
abruptly from one level to the other. So, we can say that if your level is
0.8 and you go quickly down to 0.4, that's setting yourself up to have an
episode. On that basis, I'd recommend that if your doctor decides with you
to do this, that you take at least a year, and maybe even more, to go
off.
You can tell I think this is a crucial issue for many
people. Oh yes, one more detail: as you're 40 now, in the next 5 years or
so you'll enter a phase of substantial hormonal variation compared to your
non-pregnant state -- perhaps something capable of producing shifts big enough
to trigger an episode just as the end of pregnancy did. So, unfortunately,
you'll have to factor that in. If you know when your mother stopped having
menstrual cycles, you can count back at least 5 years from there (some though
fewer would say 10) to identify a point at which this could come into
play. Since the average age of cessation of menses is 51, you're pretty
much right there according to the most conservative effort.
Oh yes (see what I mean?), there's one more yet:
there is also evidence that previous severe mood episodes such as you went
through can sensitize your nervous system in some way so that subsequent
episodes can happen more easily. In the case of bipolar I, most initial
episodes have a trigger, like a severe emotional stress; but then later episodes
appear to start relatively spontaneously. So, sorry to lay this one on you
too, there's reason to think that you're at more risk now than you
were.
There, I think that's all the factors to be taken into
account as you make this decision. It isn't obvious, is it? (and we
didn't even get into how much you are having to put up with in the way of side
effects; what your current level is and has been; what your thyroid status looks
like; and probably some other things that would come to mind if I keep
going. Better stop then. Sorry, I don't mean to overload you, but
rather, hopefully, to show you a way of thinking).
Yes, I did notice that I too seemed to have a
lot to say...
Dr. Phelps
Published March, 2003
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