This young lady is from my past. 15 years ago, she was a star in a class on writing for publication seminar series that I put on for 8 highly gifted 4th & 5th grade students in the Oak Harbor, WA School District. She was on an Odyssey of the Mind team that I coached for two years. She is a precocious, scarily smart (I really mean smart) and I was delighted to be allowed to mentor her. Recently, she found me via the Internet. After a few letters back & forth, I realized that she is having a long trudge through the forest of pharmaceuticals. I asked her about the drugs. The following is most of two letters. I deleted the personal references. I do not have the chops for this, you guys, but it looks to me that her doctors need the assistance of a good, modern pharmacist. If you can help my friend out, that would be good. I have her permission to post this. JP
As for me…I’m more medicine than girl. The official diagnoses are
bipolar I and OCD…for the last 8 years or so, my basic regimen has
been lithium (lots of it, 2700mg a day…makes life interesting),
lamotrigine, bupropion SR, propranolol (for lithium-induced tremor).
About 2 years ago the bupropion just kind of kicked the bucket, we’re
not sure why, so they started adding other things to prop it
up…fluoxetine, paroxetine, duloxetine, sertraline, fluvoxamine,
citalopram, escitalopram, venlafaxine, desvenlafaxine, mirtazapine,
nortriptyline, amitriptyline, clomipramine, doxepin, imipramine,
desipramine…the ones that weren’t ruled out by horrible side effects
(about 2/3) they tried alone, or put in 3 instead of 2 (nobody ever
stopped the bupropion…I don’t know why. Obviously it’s not working.)
or raised the dosage crazy high, or with the strangest dosing
instructions (take 3 one day, 1 the next, 2 the day after, repeat…with
one foot in a bucket of chicken’s blood while patting yourself on the
head and rubbing your tummy…*groan*) – the pharmacy doesn’t even have
to ask my name anymore, they all know me by sight. So, in early December
they put me in the hospital. I was there for about a week. Nobody ever
believes me when I relate what happens to me when I take various
medications…it’s like they don’t really believe that I’ve been on all
the things I say I’ve been on, and doctors know best *rolls eyes* – so
they put me on escitalopram, and then had to take me immediately off
because of the side effects. They replaced it with citalopram, which was
just as bad, and then he kind of closed his eyes and put his finger down
in his drug book…desvenlafaxine, again. I was so fed up at that point
that I “got better” really fast just to get the hell out of there. My
doc replaced the desvenlafaxine with venlafaxine (because man, that
stuff is EXPENSIVE) which was the most godawful experience I’ve had so
far…then I went back in the hospital 2 weeks ago. Where my experience
repeated, except with more dishonesty. He started by suggesting Geodon,
Risperdal, Zyprexa, Abilify, Seroquel, Invega (that one was new to
me)…then on to haloperidol, chlorpromazine, loxapine…getting
frustrated with me even as I’m explaining that every single
anti-psychotic I’ve ever been on…and I’ve been on most of them…has
given me severe tardive dyskinesia and made me act like a sluggish
zombie. So he goes, ok, we’ll try a stimulant and a new anti-depressant,
and wrote for Concerta and perphenazine. …now, you probably got right
off what’s wrong with that statement, but I’d never heard of
perphenazine, so I didn’t know until my face started moving on its own
that it wasn’t actually an anti-depressant. I was so angry I “got
better” again…bit stupid really, since I’m still in incredibly bad
shape and going back to the hospital is out of the question now.
My regular doctor decided he wanted to see how the perphenazine would
go, since I’d never had it before, and cut the dose down to 4mg…killed
the Concerta, he couldn’t even understand why the guy had decided to try
it to begin with. The TD is getting bad and the depression andOCD are
out of control, and I’ve considered just flushing the whole pile of it
and playing stupid. I asked for MAOIs…they’re the only thing I HAVEN’T
tried (other than crazy old anti-psychotics) and everyone I speak to
agrees that they’re the next logical step, but there are blocks on the
line…my doc can’t prescribe them because they’re not on the clinic’s
formulary and he’s not a permanent employee, just a contractor, and
can’t alter the stupid thing. He doesn’t seem to be willing to send me
to the chief psychiatrist who CAN, though…I was angry for a while, but
I’m mostly apathetic at this point. Mostly…it’s not all gone, as
evidenced by these two enormous paragraphs. *bangs head against wall*
A danger to myself…man, I wish I could tell you how uncomfortably
familiar those words are. Every doctor’s appointment, it’s “Are you
having thoughts of hurting yourself or others?” Lately the answer is
always yes, to the extent where I think I can get away with it before
they start putting through papers for involuntary commitment. Things are
pretty bad…worse than they’ve ever been, I think. Still holding on,
for now.
Bipolar, yes. I don’t know if I’m still myself with that much lithium,
but the alternative is much, much worse, so I keep taking it. Doctors
keep trying to take me off and put me on something “milder” like
Depakote and I have to fight like crazy against it…I’ve been on
*everything*, lithium is the only thing that’s been consistently
effective. It makes me terribly sick if I’m not extremely careful, but
taking me off lithium is a guaranteed stay in a psych hospital, no
matter how good or bad I was before. I’ve had 5 major manic episodes (
almost jumped off my apartment building once, was awake for 9 days and
drove to Canada another…none of which I remember doing) and I was off
my lithium every single time. I get mild bouts of hypomania sometimes,
but mostly if I’ve got a decent lithium level it’s depression that’s a
problem. I *need* an anti-depressant that works. I can’t believe I’m the
only one who sees this.
As for the OCD…it’s the O that kills me, right now. Compulsive
behaviors are present to a significant extent, of course, but obsessive
and intrusive thoughts are crippling me right now. This yahoo at the
hospital insisted the Concerta would help with that…I don’t have a
medical degree, but it seems absurd to me that anyone would think a
stimulant would CALM THAT DOWN. Which it didn’t.
Nobody likes the idea of MAOIs. They’re all crazy about the dietary
restrictions, primarily, although my doctor doesn’t like the idea of me
being without any anti-depressant at all for the 2 weeks I’d have to be
clean in order to start (which is a bit of good sense, I think, I’m
concerned about it, too)…but like I told him, I don’t care if it means
I have to live off cardboard sandwiches for the rest of my life, if it
makes me feel good and helps me function. They’re trying to push ECT
again and it amuses me slightly that they’re more relaxed about the idea
of inducing seizures than potential spikes in blood pressure. I’ve
refused ECT so far, and will continue to do so as long as there’s
another option…my brain is all I have, I won’t take even a tiny chance
of sacrificing it. Losing my short-term memory terrifies me like nothing
else. If I’m going to live, there has to be some quality of life.
JP, below is my letter to her. I am certainly no expert on this subject and what I know I have learned from 40 years of experience being a pharmacist and observing the patients for whom I filled rx’s:
I can tell from your letter that you are quite familiar with drugs. In fact, you are quite “smart” about the drugs, and you have a good idea about which ones work and which don’t. Looks like the physicians have taken a shotgun approach to your therapy. They just try one thing after another or a multitude of things. Simply put, I think they are over-medicating you. Personally, I would stay away from the old tricyclic antidepressants: imiprmaine, nortriptyline, amitriptyline and etc. From my pharmacy experience with bibolar patients, I believe lithium is a must. And, I think you are quite right at not stopping lithium.
About 20 years ago, I watched a lady go through a number of psychiatrists and antidepressants. The last time I heard from her she was on an MAOI. Despite the risks, if it were me, I would certainly try it before any ECT. I really can’t imagine a person with your mentallity undergoing ECT. That would certainly be my last option.
The lady on the MAOI, from the best I can remember, was taking Nardil(Phenelzine).
On a somehwat different note, I highly recommend you see the movie: “A Beautiful Mind”. You should be able to relate well to it. It is one of the best movies I have ever seen is closely based on the book by that title. It is the story of John Nash…a brilliant mathematician.
Maybe there will be some more posters on this topic with more insight into this problem, and with more clinical experience.
Aww man — I sure feel for her. The truth is, we don’t know what these drugs are doing to our brains — not really.
Is going to a “good” clinic or hospital where patients are treated like real people an option? I’ve been reading “Voluntary Madness,” which is about a woman who commits herself to three different institutions — third one seems the best, with good food, yoga, honest psychotherapy, exercise, kinda new age-y but healing. Getting clear of all the drug crap under careful supervision and then slowly, slowly, slowly going back on one at a time with lots of therapy to help things that can be helped with therapy.
Your friend has my sympathy.
I think we need more info. What side effects did she exactly have and from what drugs? Why the hesitation on the Depakote? Even the newer antipsychotics caused TD? How much lamotrigine is she on? Perhaps some side effects could be managed but we only have the names of the drugs, no doses, frequencies or durations. And why does she not see a different doctor? Is insurance a problem? Too many unknowns to give an educated answer I feel.
Thanks, JP, for volunteering to help me out. I’m quite desperate for it at this point!
As for specifics: Prozac and Paxil made me manic even on lithium. Citalopram/escitalopram both caused severe urinary retention (doc didn’t even know it was a side effect, but they each were the only new drugs added at the time, and the symptom cleared up almost immediately upon stopping.) All 3 SNRIs made me horribly dizzy, to the point of falling when walking, as well as the “brain shivers” and a general feeling of extreme “not good.” Discontinuing those was a nightmare, as well. Tricyclics ranged from extreme sleepiness to dizziness that impaired my ability to walk properly. Lots of dry mouth from a number of these, but I can handle that.
Depakote was useless; it was started in the hospital and I stayed on it for 8 months before they finally tried the lithium. The results were fantastic and immediate.
Every antipsychotic I have tried has caused some severe side effect. The newer ones…risperidone, ziprasidone, aripiprazole, olanzapine – lots of lip chewing, mouth movements I couldn’t control. Olanzapine made me sleep, 23 hours a day (no exaggeration…I fell asleep showering, cooking dinner, etc). With the newer ones, my muscles kind of locked up…I’d go days without being able to relax muscles in my hip, leg, shoulder. The older ones were pretty similar, although I think it took longer for the symptoms to develop. Thorazine and haloperidol also messed with my neck and my vision (I couldn’t look straight ahead, only down and to the right, and my eyes wouldn’t focus properly.) They tried giving me Cogentin to calm it down a little, but I had a bad reaction to that, as well. As far as I can tell, the only good they did was to calm me down, and I’d really rather not go through life sedated.
I’m on 400mg lamotrigine per day, in addition to the 2400mg of LiCO3. The lamotrigine was initially added because the doctor I was seeing at the time was uncomfortable with giving me such a high dose of lithium.
I’m stuck with the doctor I have because I’m using county mental health, a free clinic. They take the doctors who volunteer, and they rarely stay longer than 3 months or so. I have Medicare (I’m on disability) so it’s theoretically possible for me to see a private psychiatrist, but $30 copays add up quickly when I’m seeing the doc once a week, and I just don’t have enough money to pay for that AND my prescriptions.
The bupropion worked for so long, and it was fantastic. I was functional, doing quite well in fact. The lamotrigine/lithium/bupropion combination came after a very long (4 years) and difficult period of trying new things, new combinations, etc. It was a miracle… and then the bupropion just gave up. I’ve been severely depressed for nearly 2 years now and nothing they’ve tried has even made a dent. I don’t even know what to ask for anymore, I’m kind of in over my head.
I hope this helps…I thank you all so much.
Were you maxed out on Wellbutrin? Also has thyroid function been evaluated? Nefazadone is the only antidepressant I can come up with that seems like something you have not tried but am not sure of its role in bipolar disorder plus is quite toxic to the liver. Also have you been on trileptal or tegrtol?
I’m not sure what maxed on Wellbutrin is, but I’m at 400mg a day and they won’t let me take it all at once because they worry about seizures. I’ve had SR and XL…SR is what I’ve been taking that’s worked in the past. Thyroid is fine. I was given Serzone during a hospitalization a few years ago and I honestly don’t remember what happened, other than I wasn’t on it for very long. If it’s anything like trazodone, I was probably sleeping 18+ hours a day. I have been on both Tegretol and Trileptal. At one point I was taking Trileptal with lithium, but they dc’d it…and nothing happened, so I’m not sure what it was doing for me. Tegretol came before lithium, and I don’t remember why it was stopped…that was about 12 years ago.
I have had issues which have lead me through similar hurdles and am partial to lithium even if it a bit one sided in its action. It might not make me feel good but it has made me feel safe. I haven’t been as far on the roundabout, but I have been through exemplars of each of the families of pharmaceuticals you mentioned though not every particular drug. My bipolar hasn’t become that bad yet either. What you probably need is a differential diagnosis, being bipolar doesn’t mean you can’t have something else. Is it Tarditive Dyskenisia or some form of Parkinsonism. If Welbutrin worked and no SSRIs or SNRIs have a positive response you probably should be on Selegine. Selegine is the MAOI you should probably try for. It does the dopamine action that Welbutrin does except in the MAOI way, and it is strong enough that it is used for Parkinson’s.
The way this morning’s net surfing is going, I am going to have to write a blogpost about polypharmacy. I’ll repeat what I just told The Angriest Pharmacist.
I still remember this lady’s name, and never mind her drug profile. She was THE WORST prescription customer I ever had. If you look at Angriest’s post, you will see her. Anyhow–one day she came in and announced that she had stopped all of her medications (don’t try this at home). From that day forward, she became the BEST prescription customer I ever had, before or since—happy, even jovial, respectful. She had gotten her life back by getting off of drugs. I don’t mean abuse drugs. I mean pharmacotherapy—in her case, as I recall, antihypertensive and antihyperglycemic (DM) meds.
When you’re up to your neck in alligators, it is difficult to remind yourself that your original objective was to drain the swamp.
Instead of living in the world of medicines—the woman had a great line, “I am more drug than girl.”—there has to be a better way: psychotherapy? A change in milieu? I didn’t catch what she did for work, if she coudl work. To this politically incorrect guy, OCD is of the same origin as ADHD: from the modern book of diagnoses. I don’t say these things don’t exist, but I question their root causes. There must be a human solution to the pains of the “beautiful mind” (I saw and highly recommend that spectacular film, if only to see the gorgeous Jennifer Connelly). There must be better music to dance by than just a symphony of drug names.
A note to “The girl from the past”, I have had a couple of patients in my career with similar issues that you are currently going through yourself. They seemingly had been put on every medication under the sun to resolve their issues with no luck. One was an acquaintance I met while in school who was ADHD and the other was an OCD patient who was also battling with severe depression and had a history of polypharmacy without any meaningful positive results.
That second patient that was from a store I worked at years ago was finally helped with the addition of an MAOI: Nardil. I had spoken with her main doctor on the phone and told him basically “there are good reasons why these drugs aren’t used very much anymore, HOWEVER in this particular case I think this patient might actually benefit from a trial of this type of medication” so we decided to give it a try. I had a long talk with the patient about the use of this type of medication and what to watch for and be careful of BEFORE we filled the prescription. As it turns out she did suprisingly well after trying the phenelzine. It seems to be more effective for Major Depressive Disorder (MDD) and is more effective than SSRIs for clinical major depression usually. It seemed to really help this old patient of mine. Was she perfectly better? No, but vast improvement was what she was looking for and she was lucky enough to reach her goal. And she was willing to put the time and effort into taking that kind of medication correctly along with all the precautions and drug interactions to watch for that ususally concerns physicians and pharmacists.
As for ECT, don’t bother. I don’t think that is the right direction for your particular situation based on the limited knowledge I have in the above posts. I would not stop the lithium either, it seems to be helping you more than anything else you’ve tried to date. But consider a trial run with Nardil if you think you are willing to give it a try.
In the end I think most importantly is that you find a doctor that you trust and are comfortable with and stick with them. And don’t underestimate the support of family and friends in this whole process either. That support can mean as much as anything else. Good luck. I hope this helps a little.
Girl From the Past – I am bipolar myself and I’m very happy with my doctor (he is both psychiatrist and therapist). As a disclaimer: I am, apparently, very high functioning as it wasn’t until I put myself in the hospital as an adult anyone realized something was wrong.
I’ve tried Depakote, Topamax, and Abilify. Depakote made me emotionally catatonic, Topamax barely helped, and I developed akathisia from Abilify which thankfully resolved as soon as I stopped the medication.
The decision that provided me immediate relief was taking me off the SSRIs. Even with a mood stabilizer, SSRIs made me violent feeling and I would find myself still having manic highs despite the stabilizer.
I’ve found the _most_ relief with monotherapy Lamictal. I’m at 200mg a day. We’ve also recently discovered that ADD medications take care of my panic attacks and rage issues. So now I’m at Lamictal once daily and Concerta (36mg). My doctor refuses to treat by diagnosis and only by symptoms with guidance from diagnosis.
I understand you’re stuck with the “freebie” docs but if you _can_ find someone consistent, I strongly (as another person with bipolar disorder) recommend it. It was seeing multiple therapists and psychiatrists that finally put me over the edge and into the hospital. No one was really paying attention to me, they were just medicating me and mouthing platitudes. I’ve put out at least a thousand dollars to my psych just this past year as I’ve been on and off insurance and every penny is worth it.
I’m also on patient assistance with GSK for my Lamictal. If you can find someone steady or at least someone to advocate for you to a patient assistance program (like a pharmacist -they CAN be your advocate for something like this. The advocate does all the paperwork, your doctor just writes the rx) you may find prescription cost relief.
I should point out, the various psychs/therapists were from my University. *I* put myself in therapy because *I* knew something wasn’t right. It was their bungling that put me on higher and higher doses of SSRIs and ignoring all the other warning signs that spun me out of control ultimately.
Most of my care has been through university student health clinics too. In my experience SSRIs and little else tend to be how they work generally taking the path of least resistance. They also tend to get worked all to hell with tremendous patient volume.
Doing whatever you can to get get a provider who has time for you is so incredibly helpful. Getting single provider to coordinate my care helped to empower me in my treatment, by cutting down on the noise and crosstalk that added to the confusion. When you have to deal with several doctors who have no time to communicate with each other over your care who proceed according to their own gut without any consistent idea of your history.