. . . At the mental health clinic [where] I stayed, they were really into prescribing low doses of Seroquel [quetiapine] for unipolar depression . . . after reading up on this stuff I became somewhat angry for the widely prescribed off-label use of these antipsychotics since side effects can be strong. Especially since I was not told. Do you maybe have any thoughts on this practice?
Thoughts? Yes. Far too many. Ask anyone.
I have, over and over, lamented about the lack of honesty and transparency in the doctor-patient relationship. Specifically, why is it that doctors prescribe antipsychotics, often off-label, without disclosing their risks? It’s happened to me many times. In the hospital may be a special case, however.
Why Doctors Reach for Antipsychotics in a Crisis
Antipsychotics (by which I mean atypical antipsychotics) are being prescribed for all sorts of things these days. Traditionally, schizophrenia, but now frequently bipolar disorder and major depressive disorder (MDD) too. There is considerable evidence for atypical antipsychotic treatment in all three disorders.
Real-World Risks You Must Know
Antipsychotics are typically not pleasant medications. Antipsychotics basically turn down the dopamine and serotonin in your brain; those neurotransmitters are often thought of as “happy chemicals.” Why does that help depression? That is extraordinarily fuzzy, but we know they work for some people.*
The trouble is that antipsychotics carry very serious risks. Risks include permanent movement disorders, weight gain, and health issues that can lead to diabetes.
FDA-Approved Antipsychotics for Depression (2025 List)
Aripiprazole (Abilify) is an antipsychotic “indicated for use as an adjunctive therapy to antidepressants for the treatment of major depressive disorder (MDD).”
Olanzapine (Zyprexa, antipsychotic) and fluoxetine (Prozac, antidepressant) come combined in one medication called Symbax. Olanzapine and fluoxetine, when used in combination, are “indicated for the treatment of treatment-resistant depression.” **
Brexpiprazole (Rexulti) is an antipsychotic FDA-approved as an adjunct treatment in cases of depression.
Cariprazine (Vraylar) is an antipsychotic FDA-approved as an adjunct treatment in cases of depression.
Often, when multiple antidepressants fail for depression, antipsychotics are up next, typically as an adjunct (like aripiprazole, above). And in all honesty, in the case of severe or treatment-resistant depression, in my opinion, this practice is quite reasonable. It does work. We have lots of data on it.
Informed Consent: What Hospitals Often Skip
One of the places people are often introduced to antipsychotics is in the hospital. There are at least three reasons for this:
Patients in the hospital are there because treatment has failed thus far.
Patients need something that will stabilize them so they can leave the hospital.
Those are the realities of being in the hospital. Under these circumstances, it’s quite reasonable to prescribe powerful, more risky medication as the person is in more danger. This doesn’t mean it’s pleasant. As I remarked after having been given quetiapine in the hospital:
Seroquel [quetiapine] is the new med I’ve been given . . . 50 fucking milligrams a night. That’s ridiculous. He had to know that would kill me. And yet, somehow he didn’t care.
I will say though, he looked like I had punched him in the stomach when I saw him today. I don’t know what he was expecting but I did look pretty bad. His medication made me that way for fuck’s sake, where’s the surprise there?
Hospital Prescribing
Here’s the thing about hospital prescribing — doctors really, really want you to take the medication. No, they can’t make you (bearing legal exceptions), but they do want you to. And this is not for some dark, sinister reason; it’s because they want you to get better.
You’re sick. You don’t have the mental capacity to be considering antipsychotic study data comparisons. You don’t have the cognitive ability to make good choices and assess risk. You’re already overwhelmed. You’re in a psych ward. It’s often not the place to be discussing the nuances of treatment.
Skip the Messy Medication Details
So, doctors often overlook things like telling patients a drug is being prescribed off-label (if it is), and there may be serious side effects. They choose the treatment they feel gives you the best chance at recovery. (By the way, doctors do this all the time, not just in psychiatric cases.)
Because if you don’t accept treatment, how will you get better? And if you don’t get better, how will you leave the hospital? And if you don’t leave the hospital, how will you get back to your life?
Doctors Have a Tough Call When Prescribing in a Hospital
That’s the choice. Do you tell the patient more information and run the risk of them refusing treatment and not getting better? Or do you tell the patient less information to increase the chance they will accept treatment?
I feel for doctors in this scenario. From personal experience, I can tell you that being in a psych ward is seriously unfun. And when I was there, I was incapable of making good decisions. He could have given me heroin, and I probably would have taken it. But that’s the game, folks. Your brain isn’t working. Your brain is in crisis. That’s why you’re in the hospital. You can’t expect your brain to make good choices at that moment.
I understand the conundrum. I understand why doctors do it, and I understand why patients get mad about it. But what the heck else is the doctor supposed to do? ***
Antipsychotic Prescriptions after the Hospital
But, of course, then there’s the problem of what happens once you leave the hospital. You should be more stable and more able to make good decisions. So, it’s time for the doctor to cough up whatever it is they skipped over while you were busy being crazy (yes, I use that word; I don’t consider it derogatory).
I find doctors tend not to do this. I guess they don’t want to rock the boat if you’re doing well? They’re lazy? No time? Who knows? I’m not a doctor and really can’t say. I consider it unprofessional, unethical, and bad practice, but that’s my opinion. (You might notice, I’m not a doctor.)
Frequently Asked Questions
Here are some frequently asked questions about inpatient antipsychotic prescribing.
Why do psychiatrists reach for antipsychotics when someone is hospitalized for depression?
Inpatient admission usually means previous antidepressant trials have failed, and the symptoms have become dangerous (suicidal thinking, psychosis, inability to care for oneself). Certain second-generation antipsychotics—especially aripiprazole and quetiapine XR—have data showing faster symptom relief when added to an antidepressant, which can shorten a hospital stay and lower the risk of self-harm (psychiatrist.com).
Is off-label prescribing legal in the United States, and what should my psychiatrist disclose?
Yes. The FDA regulates drug manufacturers, not the practice of medicine, so physicians may legally prescribe a medication for an unapproved indication if it’s in your best interest and backed by credible evidence. Ethically, the doctor should tell you that the use is off-label, discuss known benefits and risks, and obtain your informed consent—ideally in writing (pmc.ncbi.nlm.nih.gov; journalofethics.ama-assn.org).
Can I refuse an antipsychotic while I’m in the hospital?
Generally, competent adult patients have a constitutional right to refuse treatment (Rennie v. Klein, 1983). However, every state has statutes that allow forced medication if you are under an involuntary commitment order, judged unable to make medical decisions, or in an emergency where there is an imminent danger to self or others. The exact rules and appeal procedures vary by state, so ask the treatment team to explain your legal status and the hospital’s review process (psychiatrictimes.com)
What side effects should I watch for after discharge, and how often should I be monitored?
Second-generation antipsychotics can cause weight gain, high blood sugar, lipid abnormalities, blood-pressure changes, and—in rare cases—tardive dyskinesia (involuntary movements). U.S. guidelines recommend baseline checks of weight/BMI, waist size, blood pressure, fasting glucose or A1C, and lipids, followed by repeat labs at 4, 8, and 12 weeks and then every 3–6 months. Report any uncontrolled movements, extreme sedation, or sudden mood changes to your clinician immediately (pmc.ncbi.nlm.nih.gov; aafp.org)
Note: This FAQ is for educational purposes only and is not a substitute for personalized medical or legal advice. Always discuss treatment decisions with your prescribing clinician.
Your Action Plan After Discharge
I’m sorry to say doctors are often only as honest as we make them. We have to question them. We have to get the information even if they don’t offer it. It’s our responsibility. Not because it should be, but simply because we’re the ones with the most invested. Like I said, the time to do this isn’t likely going to be in a hospital ward, but at some point, the unpleasant information has to be dealt with. And it may only happen if you force the issue.
Share your inpatient experience in the comments.
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Notes of the Foot
* I actually have a pet theory on this regarding depression and mild psychosis, but that’ll have to be another day.
** Treatment-resistant depression is generally defined as “major depressive disorder in patients who do not respond to two separate trials of different antidepressants of different classes of adequate dose and duration in the current episode,” although it’s not a universal definition.
*** An answer, by the way, might be to have a patient’s proxy or advocate make the decision, as they are not ill at the time. However, as time is an issue, and decisions have to be made extremely quickly, it’s unlikely a proxy could get up to speed on the treatment fast enough. Not to mention, many of us don’t have such people.
Natasha Tracy is an award-winning writer, speaker, advocate, and consultant from the Pacific Northwest. She has been living with bipolar disorder for 26 years and has written more than 2000 articles on the subject.
Find more of Natasha’s work in her acclaimed book: "Lost Marbles: Insights into My Life with Depression & Bipolar" on Amazon.
Connect with Natasha at the social media links below.
I hate atypicals. I was put on one in 2001 without ever being told about the dangerous side effects. They’ve wrecked my physical health. I weigh more that 120lb more now, and have severe diabetes. I can’t stay awake half the time. I’ve tried stopping various atypicals (with medical help) for years, every time a disaster with me landing in the psych ward. The doctors there want me to think that it’s my underlying condition coming back, but I’m certain that it’s discontinuation syndrome, the physical effects certainly are.
This happened most recently a few months ago, I spent a week in the phosp and am still having bad and fast mood swings six weeks after getting out. What have they done? Intensive 5 days a week therapy and an older atypical that is causing me worse problems than the one I got off of. I think I’m going to have to graduate from this program and go back to my regular prescriber, then start over again. Will I end up in the hospital again? Will I gain more weight? (I am on the older one they have me on now)
I’d use some choice words, but this is a family blog… :-)
I take the “atypical antipsychotic” Abilify which seems to have the same effect as a mood stabilizer on my bipolar disorder, and I’m not taking a “typical” mood stabilizer right now. Before that we tried one of the other drugs in the antipsychotic family, with the result that I spent four days thinking what a great idea it would be to carve my arms up with a kitchen knife. I didn’t feel depressed or mopey, but I just couldn’t get that idea out of my head. Finally I ‘fessed up to a friend who made me call my doc, and he said to stop taking the drug immediately. I did and the impulse went away within hours. These drugs are very tricky, folks. What works brilliantly for one person may be an epic disaster for another. If at all possible, find a psychiatrist you can work with and STICK WITH THAT DOCTOR. Nothing’s more valuable to a mentally interesting person than a doc who KNOWS that what’s going on isn’t normal for you.
I understand the crisis thing.I once took a powerful (old) antipsychotic and was happy to get it.I couldn’t have functioned on it but it served it’s purpose. It was temporary for me.My beef is that pdocs seem to have an aversion to backing off dosage when stability is achieved/maintained .I always want to try and be on as little meds as possible.But you definitely need the pdocs help.
As far as atypicals are concerned I have taken them and now have diabetes. On one my prolactine levels went through the roof.Only when I had a female pdoc did they even test.Puts me at increased risk for breast cancer.
I was diagnosed bipolar by age 14, and started on seroquel. I was up to 600mg extended release a day, and I was a freakin zombie. Slept AT LEAST 12 hours a night, still slept through my alarms for school and work so I continually got into trouble. I had to stop working and going to school, and what I loved most (being a volunteer firefighter). The medication *literally* ruined my life. I don’t know what it did, and the doctors don’t believe me, but I’m 25 now and my body has never ever been the same. Not to mention the 2 full years it took me to come off this medication, because despite what doctors think it’s *highly* addictive. Not to mention the self harm, extreme mood changes, sweats, my head isn’t the same. It never has been. I fully regret EVER starting that medication, or to be fooled thinking it was helping. (It did), at first, and only for a little while.
I spent 4-6 years on it, it’s a little fuzzy in my memory, (also a glorious side effect is memory loss), and the rest of the years just trying to get my life back to somewhat normal. Which I haven’t. Sometimes i get worried it’ll never happen, and it’s all because of seroquel. I often wonder what my life would be like now if I didn’t take it, ever. Not that I can go back and change it, but when my doctor told me it was “perfectly safe” I believed him.
I have no trust or faith in our public health care and have had a horrendous time trying to get help. I hope nobody else has to deal with what I’ve gone through.
Let me tell you something concerning anti-psychotic medications. ALL OF THEM. When the doctor prescribes them to you, he or she will tell you that you MIGHT gain some weight. (let met tell you, I’ve been around a LOT of mentally ill people and I’ve NEVER seen a slim person who’s on a decent dose of any anti-psychotic med.) and they’ll tell you that (many of these meds) may give you diabetes), they’ll tell you that you’re gonna feel hung over in the morning when you get up or that you will have trouble waking up, and that’s about it. What they WONT tell you though is that LONG TERM USE OF ALL ANTI-PSYCHOTIC DRUGS CAUSE ATROPHY (SHRINKAGE) IN THE FRONTAL LOBE OF THE BRAIN. And if you call him or her out on that, they’ll look at you like they saw a ghost and ask you, “how the hell did you know that?”. If that not an admission that they cause shrinkage in brain , I don’t know what is. And there are doctors giving these meds in high doses to TEENAGERS and adolescents. So let’s screw up their minds before they reach adulthood. Google “anti-psychotic medications and brain damage” and see what comes up.
Oh–if you don’t have an informed proxy, you may have access in your community to a “peer counselor.” A peer counselor is an experienced patient who can help you out with the patient end of applying life skills. Sometimes there are recovery centers or other such in your community through which you can gain access to a peer counselor. If you are isolated and don’t have access to a proxy, a peer counselor can help you put together “best practices” for daily living — like how you interact with the professionals around you — that are tailored to your personal condition and the specific realities of your life.
“Why doesn’t my doctor or pharmacist just explain well enough in the first place?”
Because they’re human.
It’s human and natural to assume that everyone else knows what you know. It’s human and natural to develop a mental picture of what’s “common knowledge” based on the people you interact with all the time and what they do or don’t know.
The doctors interact with psychiatric nurses, hospital personnel, experienced patients, other doctors, pharmacists. Many, many of the people your professionals interact with all the time already know all this stuff.
While we all wish there was a larger supply of medical care to meet the demand, the reality is almost every medical professional you meet, at every level, is rushed off their feet with their ginormous work load. They see patient after patient after patient all day long.
In the rush, no matter how hard they try, they are humanly imperfect at gauging what you don’t know. Sometimes, perhaps, to epic fail proportions. On a gut level, it doesn’t register that particular information is news to you. So where their automatic procedures for what they do every single time doesn’t trigger them to tell you stuff, where it would take independent judgment about what additional information they need to give you now, they are at risk of dropping the ball.
We can’t make the doctors perfect. We can try to improve procedures, and the medical profession _has_ tried to improve procedures. I’m offered medication counseling practically every time I fill a prescription. All the time, I’m having pharmacists ask me, “Have you taken this before? Do you know what to watch for?” Or, “I see you’ve taken this before. Do you need medication counseling?”
The reality is that doctors are extremely specialized professionals and some of the things we’re used to them doing have become the province of other medical professionals. Your pharmacist is your first line for finding out in-depth information on the medications you’re taking. It’s become the pharmacist’s job to answer all your questions he or she can, and then give recommendations about which questions, if any, to take back to your doctor.
As a patient, you need to develop your own “policies and procedures.” You need to develop your own “best practices” into a routine to ensure that the ball doesn’t get dropped on your end, either.
Sometimes things happen that are nobody’s “fault”, a mishap just falls through the gaps in people’s various “best practices” and “standard operating procedures.”
I love DBT. I love the principles of effectiveness, focusing on what works, focusing on the situation you’re in rather than should-bes and ought-to-bes. Not getting hung up on “fair” or on making judgments about whose fault whatever-it-is is.
I love DBT because when you make the skills a lifestyle, that greatly improves your life.
What is effective and what works is developing personal “best practices” and “standard operating procedures” that take your own condition into account, to ensure that you are aware of the cost and benefits trade offs, and the hazards, of every medication you take.
It isn’t that it’s “your fault” if you get a nasty medication side-effect that outweighs the benefits of the med. It’s that whose fault it is doesn’t matter nearly as much as avoiding the problem in the first place.
Your pharmacist is your first contact and resource for most of this information. Make sure your life strategies include making best use of her services.
I strongly recommend that any patient read the package insert or the detailed information about the drug that comes when you get it filled at the pharmacy. If you cannot read or understand the package insert, then it’s your responsibility to have a proxy person who does it for you.
How you use the package insert from there is you or your proxy takes notes about what you don’t understand. The package insert usually warns you about what things to watch for when you’re taking the drug, but you may not understand what it means. You or your proxy should use a highlighter pen when reading the insert and highlight things that talk about what to watch for if you don’t understand what they mean.
Then you or your proxy needs to hump your butt(s) back down to the pharmacy and ask the pharmacist, “Hey, what should I watch for with this? What does this mean?”
Or ask the psychiatric nurse at the practice where you are treated. Or ask to be put through to a psychiatric nurse at the hospital.
You may well be incompetent to take care of yourself (or not competent right then) because of your brain being on the fritz, but you’re an adult and you’re responsible for having _someone_ you can count on as your proxy to do the “good patient” aspects of your care–like reading the inserts and following up on your questions.
If you have no proxy–sometimes we get isolated and don’t have help available–who can read the inserts and ask questions for you, you need to _tell the doctor_ and _tell the pharmacist_ each time, “I have nobody to help me follow the package inserts. I need you to counsel me in more depth about my medications.”
When you’re in the middle of a suicide attempt is obviously not the time to do this.
It can be helpful to ask your doctor and your pharmacy to make a note in your records that you have a mental health problem AND NOBODY TO HELP YOU understand the package inserts.
If they don’t know there’s nobody acting for you, they can’t help you adequately.
Yes, they should ask every time whether you can read the inserts or have someone to help you with them, but this is the real world and things slip through the cracks if we don’t have multiple, redundant strategies to ensure Bad Things don’t happen.
Your competent proxy, or your action putting a note in your records that you do not have one and requesting that you get extra medication counseling each time, is how you provide one more safeguard for not being able to do that for yourself.
People aren’t going to knowingly or deliberately let your life go down in flames, but you will have a more functional result the better you do at helping the professionals help you.
So it’s all my fault???? — No, that’s not the point.
It’s not about blame and fault. It’s about having multiple redundant safeguards for yourself to ensure your care works as well as possible.
Zyprexa bought me a 6 day stay at the hospital. my fever would be normal. twenty minutes later over 103. my doctor thought it was nms which can kill you.
seroquel, another contender in the weight gain nightmare has given me dystonia known as pisa syndrome, the pain is tremendous. i take clonzapine to treat the pain.
it’s an anticholonergic which is fun in it’s own right.
you have anxiety, clonazepam is perfect. recommended for 2-4 weeks, i’ve been on it ten years and it is not good for memory or cognition. am i bitching?
I put in my advance directive (for mental health treatment) that I do not consent to being treated with the drugs that I know are bad for me, and that I do NOT want drugs that are known to cause diabetes/weight gain.
Admittedly, I only put this in because I was given Geodon by a hospital doctor, and it gave me diabetes. Abilify was also terrible for me.
I’ve also been meaning to write up a list of questions for my family/proxy to ask if I’m incapacitated and they need to decide if I should be given a specific medication.
I have some questions I am hoping you (or someone) can answer. I will try to keep this brief. I had a break early this year. I thought God was talking to me and I did some pretty dangerous things and then became paranoid. It was all very scary, especially when I came down and realized how unstable I had been. I went back to my doctor. Because of the severity of my episode, he prescribed a higher dose of Abilify, along with some others. I am still unstable, and have never completly recovered from the delusions. I have the impression that he intends to keep me on the Abilify for maintenence also (I’ve not responded to lithium in the past). Should I question this? I should add that I love my doctor and I trust his judgement but I also have never heard this about the antipsychotics (he’s used others over the years). Should I be concerned?
I’ll tell you my golden rule when working with doctors – when you have a question – ask it! I’ll give you my opinion, but it’s really your doctor’s opinion that you should understand.
First off, considering you had a psychotic break, it’s really good that you went to your doctor and it’s good that he adjusted your medication because of it. The only issue I might have is that you haven’t completely recovered. Most research indicates that the doctor should work towards removal of _all_ symptoms during treatment as this gives you the best chance of not having future breaks.
I’m sure you know this, but there are options outside of Abilify to help you with this situation. There might be a better antipsychotic for you and that might be an option if Abilify is not removing all your symptoms.
Yes, I would talk to your doctor about this. Make sure you tell him whatever symptoms you’re still experiencing.
Like I said, communication is important, so talk with him and hopefully you have find a solution.
OK, feeble suicide attempt, no intent and wouldn’t have worked. Wasn’t really depressed, maybe a bit manic. Argued with my doctor about his suggestion I go to the psych ward. Among other things he said they can balance your meds there.
Spent four days there and loved it. I know, I know.
I finally saw the psychiatrist and she reduced two meds. I was on 15 minute bed checks for snoring.
I see my doctor a few weeks later, told him my new med regime and he upped them back to where they were. I have a suicide attempt and psych ward stay for a suicide I wasn’t trying to commit.
Side effects of Zyprexa and Seroquel: fifty pound weight gain in a year. Hospitalized while on Zyprexa for Neuropleptic Malignant Syndrome. Very high fever for 6 days. It once went from 98.6 to 104 in under 30 minutes. Good hospital-bad nurses.
Side effect from Seroquel which is related to tardive dystonia. I DX’d it myself, my doctor had never heard of it. It’s called Pisa Syndrome and is named after the Leaning Tower of Pisa. From the waist up I lean to the left. Sometimes worst than others. I had an MRI and no lesions, etc. Pisa Syndrome is caused by long term exposure to anti-psychotics.
I’m still on Seroquel because it is working. One day at a time.
After 30 years on psych meds, I have lots of stories.
I’m fortunate in that my psychiatrist actually treats me like an intelligent adult and discusses treatment options with me, with one exception: Seroquel, which she prescribed for insomnia. I don’t remember any mention of side effects to watch out for (admittedly, that could be my memory) and I sure wasn’t expecting (and didn’t make the connection for awhile) that the stuff would give me the munchies (i.e. weight gain). Why don’t they just say it could give you the munchies, anyway? It was okay when I was on 25 or 50 mg, but when it stopped working for me, we upped the dosage, gradually, to 125 mg and that’s when I started eating like crazy in the evenings when the drug started taking effect. I would have caught it a lot sooner if I’d known to look for it.
I have to say, I do agree with you there. If you know what to look for, then it’s easier to see the warning signs. Sorry no one warned you about the “munchies” but I don’t think that’s a technical term :)
Sometimes it is GOOD to know the worst possible scenario… so you know it’s happening. My mother had allergic reaction to mere anti-biotic, one that would kill her if she kept taking it…. KNOWING what was going on and it was not mere symptom of her disease saved her life.
And psychmeds are much more dangerous than anti-biotics… one should know the worst possible scenario, not to scare themselves… but to be prepared.
If person hoped on plane with “let’s go to Nigeria and I will not read any official warnings, because I don’t want to scare myself and screw having embassy number with me…”, you’d say they are foolish and irresponsible. Putting “random” chemical in your body without knowing what it can do… is irresponsible.
Problem with psychiatry is that many doctors don’t care about what crazies got to say. Not wanting treatment is non-compliance for many. Nobody will tell you that you fake allergic reaction to other nonpsych medicine… (mostly).
“Because if you don’t accept treatment, how will you get better? And if you don’t get better how will you leave the hospital? And if you don’t leave the hospital, how will you get back to your life?”
sometimes you don’t get better for taking strong drugs. You just don’t. That is where the survivor movement comes from. They are not evil people who want to harm psychiatry (and crazies that gotten help from it).
You may suffer and still know what is worth it or not…. And maybe the crazy suffering person knows better what is good for them. They may know they are sensitive to any medicine or if they never taken anything before… they may react more strongly then expected, or because they know they react badly to just about everything… And sometimes, docs won’t listen to this.
I wouldn’t really argue on that point. Well, I’m not sure the worst-case scenario is something any of us really knows about because the worst case scenario could be anything. Yes, allergic reaction could be one of those things but that is the case with any drug and no doctor suggests you take an ibuprofen “but watch out of you’re allergic to it.”
And of course not everyone gets better from medication but if you’re in the hospital you need _some_ kind of treatment – that is why you are there.
And yes, I agree that sometimes the wishes of people with a mental illness aren’t taken as seriously as they should be. No argument here.
I’m not suggesting information is bad, just that it must be judicially used.
“And of course not everyone gets better from medication but if you’re in the hospital you need _some_ kind of treatment – that is why you are there.”
of course…. but does it have to be the most vile (side effect wise) drugs out there? I am not sure. I don’t think everybody who ends up in hospital really needs it (anti-psychotics). It could be a person’s first crisis and all they need is some coping tools AND long term plan (which is hard to stick to if you feel you have been screwed over by the “system” on your first encounter with it). Or one is on the lowest point of their life… due to extrernal situation. Are strong tranquilizers (which is basically what APs are) really a solution to all? Or are they given more or less because it would be too much effort to look at each person as person and try to find individual aproach for each of them? Sometimes it would be ideal if they could keep the person in longer, or provide them serious outpatient support, than “here’s your pills, kthnxbai”.
People end up on regular ER with relativelly non-lethal maladies… we have more testing for regular health problem, so somebody who gets food poisoning doesn’t end up hooked up on chemotherapy when going to ER…. shouldn’t more caution be applied in MH system too… especially with mind altering meds… that *can* cause more harm then good when used flippantly? (which by stories of my friends who had the misfortune to end up in mental hospital often are…).
I’m not suggesting that everyone in a mental hospital needs antipsychotics and to the best of my knowledge, there is no reason why everyone should be given them. And yes, I know that sometimes people aren’t treated as individuals as much as they deserve. The system certainly isn’t perfect, but I believe doctors do work to do what they can.
As you know I have from time to time respectfully disagreed with some of your statements only now I am not so much in disagreement as to what you stated but surprised at some of your commentary after following your blogging for several years and coming to know a little about you.
Before I indulge your time I thank you or one of your readers for the tidbit about Seroquel XR (quetiapine fumarate extended-release) being FDA approved for the “adjunctive” treatment of depression. I was not aware of this particular fact not that it makes a significant difference in my thinking.
Anyway, what surprises me is your high degree of intelligence, inquisitiveness and penchant for research and the fact that as a younger person your superior computer skills and yet you state, “Obviously you feel comfortable with how you discuss antipsychotics with your patients, which is good. I can’t tell you the number of times antipsychotics have been prescribed to me (multiple doctors), however, with no talk of side effects whatsoever (outpatient).”
When prescribed any medication have you not asked for the detailed pharmaceutical drug insert and/or received a printout from the pharmacy relating to the medication or immediately gone to your computer for information? I almost always request the detailed pharmaceutical insert and even then research the Internet for information. The question I invariably ask myself when reading about side-effects is what side-effect the pharmaceutical company may have missed because they seem to cover their asses with every possibility. Then again, those of us who use the Internet should have little to no excuse, in my opinion, to be reasonably educated about medications, treatment options and potential side-effects. As a reminder and one in which I stated in another blog that aspirin is a potential killer; how’s that for a side-effect that one seldom addresses.
With the current economic environment and the pressures upon all of us, the medical community and physicians and their inability to spend as much time as I would like with the patient and as I see it as a support person, health care advocate and care giver, I feel it becomes more and more incumbent upon the patient and his/her support people to not only reasonably educate oneself but to carefully observe loved ones and to note any significant changes both positive and negative in treatments in order to properly guide the attending physician.
I’m sure most of us are also aware that most all medications and treatments are never tested upon or approved for children. Should this mean the treatment should never be considered? When an approved treatment for one indication is used off label for another indication and is not FDA approved should one not consider its use in an adult when there are indications of potential benefit?
Let’s also carefully remember when reading the literature or being told of “potential” side-effects that they are “potential” side-effects and as you also stated and to which I fully agree, “When the treatment works it’s always worth it and when it doesn’t it seems like it wasn’t worth it. But unfortunately, the only way to find out if it works is to try it. Life’s just kind of a bitch that way.” And when it doesn’t work and there is a serious side-effect up pops another blog and dogma lambasting the treatment and often calling for its banning without reasonable thought or consideration that others have benefitted from the very same treatment.
In my opinion, laying blame upon a caring physician especially when he/she suggests a medication or treatment option doesn’t do it for me especially when I have the ability to research, discuss and help in decision making on my spouse’s behalf while also carefully monitoring and maintaining notes from my observations. As a little aside on the topic of Seroquel XR we are aware of and have been fortunate to be able to modulate Joyce’s treatment regimen so that her weight has been maintained within an acceptable range for her.
I think “Psych Resident” statement, “When I prescribe an atypical antipsychotic medication, I tell the patient what I hope it will do for them…” to be both reasonable and adequate unless a patient specifically addresses questions about side-effects or as another respondent stated, “…I certainly agree with your last paragraph that it’s our responsibility to ask questions when we can because we’re the ones with the most invested.” Nor do I think there is a serious question of physician dishonesty in or out of a hospital setting.
As always I wish you all wellness and all the good you would wish for yourselves.
I’ll do the best I can to respond to some of your comments.
“When prescribed any medication have you not asked for the detailed pharmaceutical drug insert and/or received a printout from the pharmacy relating to the medication or immediately gone to your computer for information?”
Well, sort of. Doctors (to the best of my knowledge) don’t have printouts to hand out. However, pharmacies always supply it. That doesn’t mean I find it acceptable for doctors not to discuss it.
When I said I was prescribed without discussion, I literally meant that. The doctor didn’t discuss things. No matter what I know, no matter what I _can_ find out, that doesn’t abdicate the responsibility of a doctor to talk about it.
And as I’ve mentioned here, full prescribing information, while available, it very difficult to wade through, and not something I’m always cognitively able to do. And information in TD is pretty damn buried.
“I feel it becomes more and more incumbent upon the patient and his/her support people to not only reasonably educate oneself but to carefully observe loved ones and to note any significant changes both positive and negative in treatments in order to properly guide the attending physician.”
True. But I, like everyone else, do the best I can, when I can do it. And just because I know many things (now), again, that doesn’t mean doctors can just skip the details.
“…most all medications and treatments are never tested upon or approved for children. Should this mean the treatment should never be considered?”
It has nothing to do with treatment consideration. It is a doctor’s prerogative to treat in the best manner they see fit, on or off label, but that doesn’t mean they shouldn’t tell the patient. I’m treated off label pretty much exclusively.
“…laying blame upon a caring physician especially when he/she suggests a medication or treatment option doesn’t do it for me especially when I have the ability to research, discuss and help in decision making on my spouse’s behalf while also carefully monitoring and maintaining notes from my observations.”
I wouldn’t lay blame on a doctor for “suggesting” a medication, only for not fully-informing a patient their reasoning and potential risks and benefits.
And I don’t need to remind you that many patients do not have someone to look out for them. Most of us are doing this on our own. It’s incumbent on the doctor to help us do that. They don’t get to skip parts of their job because it’s inconvenient.
“Informed consent” means something. And it means more than go-home-and-spend-hours-researching-a-medication-and-hope-you-get-it-right-in-spit-of-not-having-attended-medical-school. I’m confident I can handle that type of responsibly at this point in my history and treatment, but that’s hardly common.
Herb, I admit I did not read through to the end of your post. However, I became annoyed. So, it’s my fault for not doing research.
There are no computers to do research on while involuntarily committed in a hospital’s crisis stabilization unit. I was given a handout from the nurse on the new drug I was to start -after my visit with the psychiatrist. (Have you ever tried to read and comprehend one of those things while in a psych facility? -and no, the staff is way too busy to sit down and explain it all too you!)
A new psychiatrist each of the 3 or 4 days you are there, psychiatrist number 2 just goes along with whatever the psychiatrist did the preceding day. How do adapt to a different doctor each day -only seeing them a few minutes- let alone ask questions and comprehend answers?
I went in taking Zoloft for depression & Clonazepam for anxiety (prescribed by my general practitioner because at the time I was not seeing a psychiatrist). The psychiatrist I saw took me off Clonazepam (a benzodiazepine), which I’d been taking for a couple years, without even telling me. He also prescribed Abilify (an atypical antipsychotic).
Of course, I could’ve refused the medication. But, to do that means being written up as uncooperative. That label can be an issue when you’ve been committed for a psych evaluation. So I swallowed the pills.
After my release, I was escorted to a stairwell that emptied out into a parking lot. At that particular time of day the staff was too busy to escort me all the way to the front of the hospital. So I was dumped out into a parking lot to cut across myself to the entrance. I left with no medication -just prescriptions.
I left with a prescription for Abilify with no way to pay for it! Jobless. No insurance. And the psychiatrist knew this. But, he did his job. Evaluated me and gave me prescriptions.
Several days off Clonazepam and on Abilify (along w/ Zoloft) and I was more agitated than when I was involuntarily committed on a psych hold for self-harm! With no ability to pay, I didn’t bother filling the Abilify script -so I abruptly quit that med after taking it for several days. Most likely I started taking the Clonazepam again -though I don’t remember.
Confused, hurting -I didn’t want to know anything more about Abilify for a long time. Last year, my doctor, psychiatrist, and therapist all suggested I try an antipsychotic. But, now I’m too afraid. Even though I like my doctors, there’s a part of me that doesn’t trust anyone when it comes to medication. It’s passed out and prescribed by some psychiatrists with little regard for ensuring the patient understands much of anything about it… or will even have access to it! It seems so often doctors just prescribe, prescribe, prescribe and laugh with the smiling drug reps when they pop in, while patients wait for their appointment.
I eventually did research Ability, etc. I listened to my current doctors. I’m too afraid. I’m too afraid to try it. When doctors don’t take patient concerns seriously, when they don’t bother to provide information in the first place, it damages trust.
So, then I visited your blog, Herb. I learned from you are bio blurb that you are advocating for your wife. Have YOU ever suffered w/ a debilitating mental illness? Have YOU ever tried to understand those wordy medication hand outs while hospitalized? Your wife is very fortunate to have someone by her side. I don’t have anyone. I have to make life-altering medical decisions regarding my mental health by myself -even when at my most ill.
I blame myself for a lot already. Please do not blame me for doctors not doing their job.
Thanks for taking up my question and making a whole post about it! And thanks for the very nuanced answer. You are right that in the hospital things are different and the seriousness of the crisis warrants these measures. I wished very much back than that something would stop my obsessive suicidal thoughts, and if the Seroquel had worked for me I would not have been as critical. I guess it works for some so it’s worth trying. I was lucky that there were no negative effects anyway, probably because the dose was quite low. It’s a really hard call, up to what point should the doctor be honest but risk non-compliance or neglect mentioning the possible serious side effects so the patient has the chance to get better on it. By now I have learned the hard way that it’s necessary to deal with side effects and keep sticking to the meds for a while, but at first this was very hard for me, in particular during the better phases. But then, it’s also worked for me to not keep a well-working med because of unpleasant side-effects as it led me to another med that works just as well but where the side effects are more tolerable. So much trial-and-error, but so little one can do about it except keep faith that the right med or combination is found at some point… But anyway, to get back to the point, I wish there were a little more honesty, together with clear explanations why it should be tried anyway, and side effects should be properly monitored.
“if the Seroquel had worked for me I would not have been as critical”
Yes, that’s generally the case. When the treatment works it’s always worth it and when it doesn’t it seems like it wasn’t worth it. But unfortunately, the only way to find out if it works is to try it. Life’s just kind of a bitch that way.
“By now I have learned the hard way that it’s necessary to deal with side effects and keep sticking to the meds for a while, but at first this was very hard for me”
Yup. I totally get that. There’s this idea that we can all have “successful treatment” and “normal lives” like medication is magic. Of course, it isn’t. It’s all just what works better for an individual. Side effects are often infinitely better than the crazy.
“I wish there were a little more honesty, together with clear explanations why it should be tried anyway, and side effects should be properly monitored.”
I agree completely. Which is part of what I mentioned to Psych Resident (commenter). And, not to be too self-promoting, but I’m working on an ebook right now about relationships with doctors. I’m hoping it will help people get the information they need from their healthcare providers.
Over 20 years now of time spent in the system and seeing various doctors, my opinion of what they are doing has become very sceptical.The first 10 years after two extreme psychotic episodes,I was diagnosed with Schizophrenia. It was my CPN who advised the doctor that I had bipolar, so he agreed and took me off the anti-psychotic injections that I had been on and gave me lithium, still suffered the tormenting depression so threw in 60mg of Prozac. The tormenting depression kept coming back, as it still is. I was never told by any professional that mixing that type of anti-depressent with lithium was very unsafe. Recently have been back to see the doctor, the mood swings have become pretty torturous. He didnt do much talking and just tried to perscribe me another mood stabaliser to go on top of the one i,m already on.
Can really trust this guy or any other doctor? apart from not being able to diagnose me properly in the first place, he put me on drug combination for 10yrs that is seen unsafe.
I sometimes wonder are they covering there own backs by perscribing drugs, just in case…???..
Well, I’d say skepticism is good, but a complete lack of trust probably isn’t.
It’s an unfortunate fact of life that people with bipolar disorder often take up to ten years to be properly diagnosed. This isn’t necessarily because the doctor is doing anything “wrong” per se, just that we’re a challenging bunch because we present with some symptoms that suggest one disorder when really we have another. It’s far from ideal, but it’s reality.
Again, I don’t mean to sound defensive of the medical community, but people with psychosis get antipsychotics, bipolars included. Many of us are on antipsychotics when we don’t suffer from psychosis at all. They are just an effective treatment for some people.
That being said, for bipolar, lithium is pretty much always the first medication trial. And mixing an antidepressant with lithium is pretty common.
The problem with people who have depression as the main bipolar feature (as I do) is that the mood has to be stabilized _and_ lifted. This is a very hard thing to do.
I recommend you take a look at psycheducation.org This site is specifically for those with bipolar II (which isn’t you) but much of the information is broad-spectrum bipolar information and all the information an mood stabilizers isn’t bipolar type specific: http://psycheducation.org/depression/meds/moodstabilizers.htm
That will give you an idea of what standard treatment looks like and what your options are.
Hopefully that can sort out some of the confusion for you and it will give you something to talk to your doctor about. Understanding treatment and medications is hard, but my advise is to ask a lot of questions. You should always be able to understand what you’re being given and why. It’s your right.
When I prescribe an atypical antipsychotic medication, I tell the patient what I hope it will do for them (say, help them to organize their thoughts if they are psychotic, help them to slow down their thoughts if they are manic, help to improve their mood if they are depressed, help to improve behaviour in a dysregulated child), and that the most common side effects include metabolic changes (weight gain, possibility of diabetes in the long-term) and stiffness (if your muscles feel funny, call me right away).
I never discuss, in psychiatric medications or any other medications, whether or not a med is “off-label” — what’s the difference? Many (most?) of the medications prescribed these days are off-label. Pediatric medications are nearly always off label. Old medications aren’t going to have new trials done to give them new official indications. We use what works! With antipsychotics in particular, I might say something like “This is from a class of medications that are called antipsychotics, but they are used for a lot more than that.”
What exactly is that the doctors aren’t “being honest about” that makes you angry?
Obviously you feel comfortable with how you discuss antipsychotics with your patients, which is good. I can’t tell you the number of times antipsychotics have been prescribed to me (multiple doctors), however, with no talk of side effects whatsoever (outpatient).
I believe it was actually more than a year in that I finally heard about tardive dyskinesia, which I only found out about through my own research. TD (as you know) can be permanent even after the person stops taking the drug. And doctors really think a permanent, lifelong side effect isn’t worth mentioning? Really? If that isn’t dishonest, I don’t know what is.
And no one ever mentioned weight gain and certainly not diabetes. And no doctor ever tracked my weight (until very recently). Seriously, you think that appropriate care?
Regarding off label use, I know you think it’s no big deal because so many meds are used off label, but the average person doesn’t know that. The average person has the right to know that they are taking a drug the FDA hasn’t approved for that use. I’m not saying you shouldn’t prescribe it, but to not even mention it _is_ dishonest. You could say, “this medication hasn’t been approved by the FDA for this use but in studies this medication has been shown to be beneficial,” for example. That would be completely reasonable _and_ honest. And if gives the patient the chance to ask questions like, “why are you choosing this drug over FDA approved ones?” for example.
As a patient, it is our right to do that sort of thing. It is our right to know what we’re taking and why we’re taking it. It’s our choice and this information and these questions are the basis for _informed_ choice.
As I mentioned, in the hospital, the rules are a little different due to the emergency of the situation, but in general, patients aren’t told enough information and, quite frankly, they should be ticked off about it.
The reason I don’t ever bring up Tardive Dyskinesia is because it was common in the era of large doses of typical antipsychotics, but is nearly extinct now. With the doses we use of antipsychotic medications now, it’s not thought to be a real risk — and it’s pretty scary to talk about. We are also SO careful with extra-pyramidal side effects now: if somebody develops any of them, I’m likely to switch or discontinue the medication anyways. And TD is basically the end stage of years and years of extra-pyramidal effects. I just don’t think it’s a real risk for the vast majority of people that I’m prescribing antipsychotics to — that’s why I’ve never mentioned it to a patient.
The off-label stuff is probably a little different for me because I live and work in Canada, so FDA approval doesn’t matter to me as much. What matters to me is whether evidence shows that a med works — and that’s how I prescribe _every_ medication that I give. Lots of the time I don’t even know what drugs have FDA approval for what, because it’s pretty random and irrelevant to me.
I can appreciate you think TD is “virtually extinct” but as one who experiences movement issues from antipsychotics and as one who knows of at least two others with full-blown TD, it doesn’t seem too extinct to me. And I haven’t been on high doses of antipsychotics _ever_.
And I would suggest that talking about extra-pyramidal in serious terms actually tells people what to look for. Yes, sure, “tell you doctor about side effects” is a perfectly fine thing to say, but realistically, we all experience far more side effects than the doctor ever hears about because of time, memory and personal triage. And gosh, it would be awfully nice to know that movement disorders are serious so that if I have disordered movement I know it actually is something to prioritize.
Yes, TD or extra-pyramidal symptoms in general _are_ scary which is exactly why they should be discussed.
Actually, I live in Canada and have primarily been treated here. I could talk about Health Canada but that would alienate most of my audience. I’m not sure why you think that abdicates your responsibility regarding approval. Health Canada approves things (or not) just like the FDA. Approval actually _does_ matter. Research is good. Great. I look at it all day long. But that doesn’t mean approval doesn’t mean anything and it _certainly_ doesn’t mean that _patients_don’t_have_a_right_to_know_.You don’t get to make a unilateral decision about whether it matters to the patient. The patient gets to decide.
Doctors and patients need to work together but that can’t happen if doctors insist on hiding really bad tasting Easter eggs all over the place.
My concern with anti-psychotics, particularly Seroquel, is that far too many doctors are using them as a primary treatment for EVERYTHING including insomnia, depression, postpartum depression, ADHD, etc, BEFORE they ever even try antidepressants or other medication, in both the inpatient and outpatient settings. They completely disregard warnings, such as the one that states the medication should not be given to the elderly with dementia because it can cause death.
I understand someone in the hospital is in crisis, but if the patient has never received treatment before, I personally think starting with an anti-psychotic is serious overkill, especially since no one yet knows the long term effects of the newer atypical anti-psychotics.
While a person may not be mentally aware enough when they’re hospitalized to ask all the pertinent questions that should be asked about the medications prescribed, I certainly agree with your last paragraph that it’s our responsibility to ask questions when we can because we’re the ones with the most invested.
I would agree, that, in many cases, prescribing an antipsychotic as a first-line treatment isn’t appropriate. But in the defense of doctors, that is not their practice. In every piece of literature I’ve ever seen antipsychotics are not first treatment choices for bipolar, depression or ADHD. I can’t comment on their specific, in-person prescribing practices, but it certainly isn’t policy. (And some of this policy is driven by cost. I believe doctors pretty much always have to try an SSRI first for depression.) Barring certain exceptions where psychosis is involved.
I agree, from what I can tell antipsychotics are overprescribed. I think this is just a prescribing trend (or, perhaps, fad). It happens in medicine. There are “wonder drugs” that everyone prescribes for a while. I’m not saying it’s right, I’m just saying it seems to occur.
The one thing I will say about antipsychotics is that at low doses they post relatively little risk and can be used for things like sleep without the risks of dependence seen with benzos. You see this a lot with trazodone (antidepressant) too. Maybe that’s appropriate, maybe it isn’t, I couldn’t really say.
And yes, we’re invested, all right. And deciding what is right for any given individual is a really tough job.
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I hate atypicals. I was put on one in 2001 without ever being told about the dangerous side effects. They’ve wrecked my physical health. I weigh more that 120lb more now, and have severe diabetes. I can’t stay awake half the time. I’ve tried stopping various atypicals (with medical help) for years, every time a disaster with me landing in the psych ward. The doctors there want me to think that it’s my underlying condition coming back, but I’m certain that it’s discontinuation syndrome, the physical effects certainly are.
This happened most recently a few months ago, I spent a week in the phosp and am still having bad and fast mood swings six weeks after getting out. What have they done? Intensive 5 days a week therapy and an older atypical that is causing me worse problems than the one I got off of. I think I’m going to have to graduate from this program and go back to my regular prescriber, then start over again. Will I end up in the hospital again? Will I gain more weight? (I am on the older one they have me on now)
I’d use some choice words, but this is a family blog… :-)
I take the “atypical antipsychotic” Abilify which seems to have the same effect as a mood stabilizer on my bipolar disorder, and I’m not taking a “typical” mood stabilizer right now. Before that we tried one of the other drugs in the antipsychotic family, with the result that I spent four days thinking what a great idea it would be to carve my arms up with a kitchen knife. I didn’t feel depressed or mopey, but I just couldn’t get that idea out of my head. Finally I ‘fessed up to a friend who made me call my doc, and he said to stop taking the drug immediately. I did and the impulse went away within hours. These drugs are very tricky, folks. What works brilliantly for one person may be an epic disaster for another. If at all possible, find a psychiatrist you can work with and STICK WITH THAT DOCTOR. Nothing’s more valuable to a mentally interesting person than a doc who KNOWS that what’s going on isn’t normal for you.
I understand the crisis thing.I once took a powerful (old) antipsychotic and was happy to get it.I couldn’t have functioned on it but it served it’s purpose. It was temporary for me.My beef is that pdocs seem to have an aversion to backing off dosage when stability is achieved/maintained .I always want to try and be on as little meds as possible.But you definitely need the pdocs help.
As far as atypicals are concerned I have taken them and now have diabetes. On one my prolactine levels went through the roof.Only when I had a female pdoc did they even test.Puts me at increased risk for breast cancer.
For me they are a no go.But that is me.
I was diagnosed bipolar by age 14, and started on seroquel. I was up to 600mg extended release a day, and I was a freakin zombie. Slept AT LEAST 12 hours a night, still slept through my alarms for school and work so I continually got into trouble. I had to stop working and going to school, and what I loved most (being a volunteer firefighter). The medication *literally* ruined my life. I don’t know what it did, and the doctors don’t believe me, but I’m 25 now and my body has never ever been the same. Not to mention the 2 full years it took me to come off this medication, because despite what doctors think it’s *highly* addictive. Not to mention the self harm, extreme mood changes, sweats, my head isn’t the same. It never has been. I fully regret EVER starting that medication, or to be fooled thinking it was helping. (It did), at first, and only for a little while.
I spent 4-6 years on it, it’s a little fuzzy in my memory, (also a glorious side effect is memory loss), and the rest of the years just trying to get my life back to somewhat normal. Which I haven’t. Sometimes i get worried it’ll never happen, and it’s all because of seroquel. I often wonder what my life would be like now if I didn’t take it, ever. Not that I can go back and change it, but when my doctor told me it was “perfectly safe” I believed him.
I have no trust or faith in our public health care and have had a horrendous time trying to get help. I hope nobody else has to deal with what I’ve gone through.
Let me tell you something concerning anti-psychotic medications. ALL OF THEM. When the doctor prescribes them to you, he or she will tell you that you MIGHT gain some weight. (let met tell you, I’ve been around a LOT of mentally ill people and I’ve NEVER seen a slim person who’s on a decent dose of any anti-psychotic med.) and they’ll tell you that (many of these meds) may give you diabetes), they’ll tell you that you’re gonna feel hung over in the morning when you get up or that you will have trouble waking up, and that’s about it. What they WONT tell you though is that LONG TERM USE OF ALL ANTI-PSYCHOTIC DRUGS CAUSE ATROPHY (SHRINKAGE) IN THE FRONTAL LOBE OF THE BRAIN. And if you call him or her out on that, they’ll look at you like they saw a ghost and ask you, “how the hell did you know that?”. If that not an admission that they cause shrinkage in brain , I don’t know what is. And there are doctors giving these meds in high doses to TEENAGERS and adolescents. So let’s screw up their minds before they reach adulthood. Google “anti-psychotic medications and brain damage” and see what comes up.
Oh–if you don’t have an informed proxy, you may have access in your community to a “peer counselor.” A peer counselor is an experienced patient who can help you out with the patient end of applying life skills. Sometimes there are recovery centers or other such in your community through which you can gain access to a peer counselor. If you are isolated and don’t have access to a proxy, a peer counselor can help you put together “best practices” for daily living — like how you interact with the professionals around you — that are tailored to your personal condition and the specific realities of your life.
“Why doesn’t my doctor or pharmacist just explain well enough in the first place?”
Because they’re human.
It’s human and natural to assume that everyone else knows what you know. It’s human and natural to develop a mental picture of what’s “common knowledge” based on the people you interact with all the time and what they do or don’t know.
The doctors interact with psychiatric nurses, hospital personnel, experienced patients, other doctors, pharmacists. Many, many of the people your professionals interact with all the time already know all this stuff.
While we all wish there was a larger supply of medical care to meet the demand, the reality is almost every medical professional you meet, at every level, is rushed off their feet with their ginormous work load. They see patient after patient after patient all day long.
In the rush, no matter how hard they try, they are humanly imperfect at gauging what you don’t know. Sometimes, perhaps, to epic fail proportions. On a gut level, it doesn’t register that particular information is news to you. So where their automatic procedures for what they do every single time doesn’t trigger them to tell you stuff, where it would take independent judgment about what additional information they need to give you now, they are at risk of dropping the ball.
We can’t make the doctors perfect. We can try to improve procedures, and the medical profession _has_ tried to improve procedures. I’m offered medication counseling practically every time I fill a prescription. All the time, I’m having pharmacists ask me, “Have you taken this before? Do you know what to watch for?” Or, “I see you’ve taken this before. Do you need medication counseling?”
The reality is that doctors are extremely specialized professionals and some of the things we’re used to them doing have become the province of other medical professionals. Your pharmacist is your first line for finding out in-depth information on the medications you’re taking. It’s become the pharmacist’s job to answer all your questions he or she can, and then give recommendations about which questions, if any, to take back to your doctor.
As a patient, you need to develop your own “policies and procedures.” You need to develop your own “best practices” into a routine to ensure that the ball doesn’t get dropped on your end, either.
Sometimes things happen that are nobody’s “fault”, a mishap just falls through the gaps in people’s various “best practices” and “standard operating procedures.”
I love DBT. I love the principles of effectiveness, focusing on what works, focusing on the situation you’re in rather than should-bes and ought-to-bes. Not getting hung up on “fair” or on making judgments about whose fault whatever-it-is is.
I love DBT because when you make the skills a lifestyle, that greatly improves your life.
What is effective and what works is developing personal “best practices” and “standard operating procedures” that take your own condition into account, to ensure that you are aware of the cost and benefits trade offs, and the hazards, of every medication you take.
It isn’t that it’s “your fault” if you get a nasty medication side-effect that outweighs the benefits of the med. It’s that whose fault it is doesn’t matter nearly as much as avoiding the problem in the first place.
Your pharmacist is your first contact and resource for most of this information. Make sure your life strategies include making best use of her services.
I strongly recommend that any patient read the package insert or the detailed information about the drug that comes when you get it filled at the pharmacy. If you cannot read or understand the package insert, then it’s your responsibility to have a proxy person who does it for you.
How you use the package insert from there is you or your proxy takes notes about what you don’t understand. The package insert usually warns you about what things to watch for when you’re taking the drug, but you may not understand what it means. You or your proxy should use a highlighter pen when reading the insert and highlight things that talk about what to watch for if you don’t understand what they mean.
Then you or your proxy needs to hump your butt(s) back down to the pharmacy and ask the pharmacist, “Hey, what should I watch for with this? What does this mean?”
Or ask the psychiatric nurse at the practice where you are treated. Or ask to be put through to a psychiatric nurse at the hospital.
You may well be incompetent to take care of yourself (or not competent right then) because of your brain being on the fritz, but you’re an adult and you’re responsible for having _someone_ you can count on as your proxy to do the “good patient” aspects of your care–like reading the inserts and following up on your questions.
If you have no proxy–sometimes we get isolated and don’t have help available–who can read the inserts and ask questions for you, you need to _tell the doctor_ and _tell the pharmacist_ each time, “I have nobody to help me follow the package inserts. I need you to counsel me in more depth about my medications.”
When you’re in the middle of a suicide attempt is obviously not the time to do this.
It can be helpful to ask your doctor and your pharmacy to make a note in your records that you have a mental health problem AND NOBODY TO HELP YOU understand the package inserts.
If they don’t know there’s nobody acting for you, they can’t help you adequately.
Yes, they should ask every time whether you can read the inserts or have someone to help you with them, but this is the real world and things slip through the cracks if we don’t have multiple, redundant strategies to ensure Bad Things don’t happen.
Your competent proxy, or your action putting a note in your records that you do not have one and requesting that you get extra medication counseling each time, is how you provide one more safeguard for not being able to do that for yourself.
People aren’t going to knowingly or deliberately let your life go down in flames, but you will have a more functional result the better you do at helping the professionals help you.
So it’s all my fault???? — No, that’s not the point.
It’s not about blame and fault. It’s about having multiple redundant safeguards for yourself to ensure your care works as well as possible.
Zyprexa bought me a 6 day stay at the hospital. my fever would be normal. twenty minutes later over 103. my doctor thought it was nms which can kill you.
seroquel, another contender in the weight gain nightmare has given me dystonia known as pisa syndrome, the pain is tremendous. i take clonzapine to treat the pain.
it’s an anticholonergic which is fun in it’s own right.
you have anxiety, clonazepam is perfect. recommended for 2-4 weeks, i’ve been on it ten years and it is not good for memory or cognition. am i bitching?
I put in my advance directive (for mental health treatment) that I do not consent to being treated with the drugs that I know are bad for me, and that I do NOT want drugs that are known to cause diabetes/weight gain.
Admittedly, I only put this in because I was given Geodon by a hospital doctor, and it gave me diabetes. Abilify was also terrible for me.
I’ve also been meaning to write up a list of questions for my family/proxy to ask if I’m incapacitated and they need to decide if I should be given a specific medication.
I have some questions I am hoping you (or someone) can answer. I will try to keep this brief. I had a break early this year. I thought God was talking to me and I did some pretty dangerous things and then became paranoid. It was all very scary, especially when I came down and realized how unstable I had been. I went back to my doctor. Because of the severity of my episode, he prescribed a higher dose of Abilify, along with some others. I am still unstable, and have never completly recovered from the delusions. I have the impression that he intends to keep me on the Abilify for maintenence also (I’ve not responded to lithium in the past). Should I question this? I should add that I love my doctor and I trust his judgement but I also have never heard this about the antipsychotics (he’s used others over the years). Should I be concerned?
Hi Beth,
I’ll tell you my golden rule when working with doctors – when you have a question – ask it! I’ll give you my opinion, but it’s really your doctor’s opinion that you should understand.
First off, considering you had a psychotic break, it’s really good that you went to your doctor and it’s good that he adjusted your medication because of it. The only issue I might have is that you haven’t completely recovered. Most research indicates that the doctor should work towards removal of _all_ symptoms during treatment as this gives you the best chance of not having future breaks.
I’m sure you know this, but there are options outside of Abilify to help you with this situation. There might be a better antipsychotic for you and that might be an option if Abilify is not removing all your symptoms.
Yes, I would talk to your doctor about this. Make sure you tell him whatever symptoms you’re still experiencing.
Like I said, communication is important, so talk with him and hopefully you have find a solution.
– Natasha Tracy
Thanks Natasha for the advice. I will ask him and I will write down specifically what is still not right. Hopefully we’ll get it straight soon.
OK, feeble suicide attempt, no intent and wouldn’t have worked. Wasn’t really depressed, maybe a bit manic. Argued with my doctor about his suggestion I go to the psych ward. Among other things he said they can balance your meds there.
Spent four days there and loved it. I know, I know.
I finally saw the psychiatrist and she reduced two meds. I was on 15 minute bed checks for snoring.
I see my doctor a few weeks later, told him my new med regime and he upped them back to where they were. I have a suicide attempt and psych ward stay for a suicide I wasn’t trying to commit.
Side effects of Zyprexa and Seroquel: fifty pound weight gain in a year. Hospitalized while on Zyprexa for Neuropleptic Malignant Syndrome. Very high fever for 6 days. It once went from 98.6 to 104 in under 30 minutes. Good hospital-bad nurses.
Side effect from Seroquel which is related to tardive dystonia. I DX’d it myself, my doctor had never heard of it. It’s called Pisa Syndrome and is named after the Leaning Tower of Pisa. From the waist up I lean to the left. Sometimes worst than others. I had an MRI and no lesions, etc. Pisa Syndrome is caused by long term exposure to anti-psychotics.
I’m still on Seroquel because it is working. One day at a time.
After 30 years on psych meds, I have lots of stories.
I’m fortunate in that my psychiatrist actually treats me like an intelligent adult and discusses treatment options with me, with one exception: Seroquel, which she prescribed for insomnia. I don’t remember any mention of side effects to watch out for (admittedly, that could be my memory) and I sure wasn’t expecting (and didn’t make the connection for awhile) that the stuff would give me the munchies (i.e. weight gain). Why don’t they just say it could give you the munchies, anyway? It was okay when I was on 25 or 50 mg, but when it stopped working for me, we upped the dosage, gradually, to 125 mg and that’s when I started eating like crazy in the evenings when the drug started taking effect. I would have caught it a lot sooner if I’d known to look for it.
Hi Maureen,
I have to say, I do agree with you there. If you know what to look for, then it’s easier to see the warning signs. Sorry no one warned you about the “munchies” but I don’t think that’s a technical term :)
– Natasha Tracy
Sometimes it is GOOD to know the worst possible scenario… so you know it’s happening. My mother had allergic reaction to mere anti-biotic, one that would kill her if she kept taking it…. KNOWING what was going on and it was not mere symptom of her disease saved her life.
And psychmeds are much more dangerous than anti-biotics… one should know the worst possible scenario, not to scare themselves… but to be prepared.
If person hoped on plane with “let’s go to Nigeria and I will not read any official warnings, because I don’t want to scare myself and screw having embassy number with me…”, you’d say they are foolish and irresponsible. Putting “random” chemical in your body without knowing what it can do… is irresponsible.
Problem with psychiatry is that many doctors don’t care about what crazies got to say. Not wanting treatment is non-compliance for many. Nobody will tell you that you fake allergic reaction to other nonpsych medicine… (mostly).
“Because if you don’t accept treatment, how will you get better? And if you don’t get better how will you leave the hospital? And if you don’t leave the hospital, how will you get back to your life?”
sometimes you don’t get better for taking strong drugs. You just don’t. That is where the survivor movement comes from. They are not evil people who want to harm psychiatry (and crazies that gotten help from it).
You may suffer and still know what is worth it or not…. And maybe the crazy suffering person knows better what is good for them. They may know they are sensitive to any medicine or if they never taken anything before… they may react more strongly then expected, or because they know they react badly to just about everything… And sometimes, docs won’t listen to this.
Hi VenusH,
I wouldn’t really argue on that point. Well, I’m not sure the worst-case scenario is something any of us really knows about because the worst case scenario could be anything. Yes, allergic reaction could be one of those things but that is the case with any drug and no doctor suggests you take an ibuprofen “but watch out of you’re allergic to it.”
And of course not everyone gets better from medication but if you’re in the hospital you need _some_ kind of treatment – that is why you are there.
And yes, I agree that sometimes the wishes of people with a mental illness aren’t taken as seriously as they should be. No argument here.
I’m not suggesting information is bad, just that it must be judicially used.
– Natasha Tracy
“And of course not everyone gets better from medication but if you’re in the hospital you need _some_ kind of treatment – that is why you are there.”
of course…. but does it have to be the most vile (side effect wise) drugs out there? I am not sure. I don’t think everybody who ends up in hospital really needs it (anti-psychotics). It could be a person’s first crisis and all they need is some coping tools AND long term plan (which is hard to stick to if you feel you have been screwed over by the “system” on your first encounter with it). Or one is on the lowest point of their life… due to extrernal situation. Are strong tranquilizers (which is basically what APs are) really a solution to all? Or are they given more or less because it would be too much effort to look at each person as person and try to find individual aproach for each of them? Sometimes it would be ideal if they could keep the person in longer, or provide them serious outpatient support, than “here’s your pills, kthnxbai”.
People end up on regular ER with relativelly non-lethal maladies… we have more testing for regular health problem, so somebody who gets food poisoning doesn’t end up hooked up on chemotherapy when going to ER…. shouldn’t more caution be applied in MH system too… especially with mind altering meds… that *can* cause more harm then good when used flippantly? (which by stories of my friends who had the misfortune to end up in mental hospital often are…).
Hi VenusH,
I’m not suggesting that everyone in a mental hospital needs antipsychotics and to the best of my knowledge, there is no reason why everyone should be given them. And yes, I know that sometimes people aren’t treated as individuals as much as they deserve. The system certainly isn’t perfect, but I believe doctors do work to do what they can.
– Natasha Tracy
Dear Natasha,
As you know I have from time to time respectfully disagreed with some of your statements only now I am not so much in disagreement as to what you stated but surprised at some of your commentary after following your blogging for several years and coming to know a little about you.
Before I indulge your time I thank you or one of your readers for the tidbit about Seroquel XR (quetiapine fumarate extended-release) being FDA approved for the “adjunctive” treatment of depression. I was not aware of this particular fact not that it makes a significant difference in my thinking.
Anyway, what surprises me is your high degree of intelligence, inquisitiveness and penchant for research and the fact that as a younger person your superior computer skills and yet you state, “Obviously you feel comfortable with how you discuss antipsychotics with your patients, which is good. I can’t tell you the number of times antipsychotics have been prescribed to me (multiple doctors), however, with no talk of side effects whatsoever (outpatient).”
When prescribed any medication have you not asked for the detailed pharmaceutical drug insert and/or received a printout from the pharmacy relating to the medication or immediately gone to your computer for information? I almost always request the detailed pharmaceutical insert and even then research the Internet for information. The question I invariably ask myself when reading about side-effects is what side-effect the pharmaceutical company may have missed because they seem to cover their asses with every possibility. Then again, those of us who use the Internet should have little to no excuse, in my opinion, to be reasonably educated about medications, treatment options and potential side-effects. As a reminder and one in which I stated in another blog that aspirin is a potential killer; how’s that for a side-effect that one seldom addresses.
With the current economic environment and the pressures upon all of us, the medical community and physicians and their inability to spend as much time as I would like with the patient and as I see it as a support person, health care advocate and care giver, I feel it becomes more and more incumbent upon the patient and his/her support people to not only reasonably educate oneself but to carefully observe loved ones and to note any significant changes both positive and negative in treatments in order to properly guide the attending physician.
I’m sure most of us are also aware that most all medications and treatments are never tested upon or approved for children. Should this mean the treatment should never be considered? When an approved treatment for one indication is used off label for another indication and is not FDA approved should one not consider its use in an adult when there are indications of potential benefit?
Let’s also carefully remember when reading the literature or being told of “potential” side-effects that they are “potential” side-effects and as you also stated and to which I fully agree, “When the treatment works it’s always worth it and when it doesn’t it seems like it wasn’t worth it. But unfortunately, the only way to find out if it works is to try it. Life’s just kind of a bitch that way.” And when it doesn’t work and there is a serious side-effect up pops another blog and dogma lambasting the treatment and often calling for its banning without reasonable thought or consideration that others have benefitted from the very same treatment.
In my opinion, laying blame upon a caring physician especially when he/she suggests a medication or treatment option doesn’t do it for me especially when I have the ability to research, discuss and help in decision making on my spouse’s behalf while also carefully monitoring and maintaining notes from my observations. As a little aside on the topic of Seroquel XR we are aware of and have been fortunate to be able to modulate Joyce’s treatment regimen so that her weight has been maintained within an acceptable range for her.
I think “Psych Resident” statement, “When I prescribe an atypical antipsychotic medication, I tell the patient what I hope it will do for them…” to be both reasonable and adequate unless a patient specifically addresses questions about side-effects or as another respondent stated, “…I certainly agree with your last paragraph that it’s our responsibility to ask questions when we can because we’re the ones with the most invested.” Nor do I think there is a serious question of physician dishonesty in or out of a hospital setting.
As always I wish you all wellness and all the good you would wish for yourselves.
Warmly,
Herb
vnsdepression@gmail.com
http://www.vnstherapy-herb.blogspot.com/
Hi Herb,
I’ll do the best I can to respond to some of your comments.
“When prescribed any medication have you not asked for the detailed pharmaceutical drug insert and/or received a printout from the pharmacy relating to the medication or immediately gone to your computer for information?”
Well, sort of. Doctors (to the best of my knowledge) don’t have printouts to hand out. However, pharmacies always supply it. That doesn’t mean I find it acceptable for doctors not to discuss it.
When I said I was prescribed without discussion, I literally meant that. The doctor didn’t discuss things. No matter what I know, no matter what I _can_ find out, that doesn’t abdicate the responsibility of a doctor to talk about it.
And as I’ve mentioned here, full prescribing information, while available, it very difficult to wade through, and not something I’m always cognitively able to do. And information in TD is pretty damn buried.
“I feel it becomes more and more incumbent upon the patient and his/her support people to not only reasonably educate oneself but to carefully observe loved ones and to note any significant changes both positive and negative in treatments in order to properly guide the attending physician.”
True. But I, like everyone else, do the best I can, when I can do it. And just because I know many things (now), again, that doesn’t mean doctors can just skip the details.
“…most all medications and treatments are never tested upon or approved for children. Should this mean the treatment should never be considered?”
It has nothing to do with treatment consideration. It is a doctor’s prerogative to treat in the best manner they see fit, on or off label, but that doesn’t mean they shouldn’t tell the patient. I’m treated off label pretty much exclusively.
“…laying blame upon a caring physician especially when he/she suggests a medication or treatment option doesn’t do it for me especially when I have the ability to research, discuss and help in decision making on my spouse’s behalf while also carefully monitoring and maintaining notes from my observations.”
I wouldn’t lay blame on a doctor for “suggesting” a medication, only for not fully-informing a patient their reasoning and potential risks and benefits.
And I don’t need to remind you that many patients do not have someone to look out for them. Most of us are doing this on our own. It’s incumbent on the doctor to help us do that. They don’t get to skip parts of their job because it’s inconvenient.
“Informed consent” means something. And it means more than go-home-and-spend-hours-researching-a-medication-and-hope-you-get-it-right-in-spit-of-not-having-attended-medical-school. I’m confident I can handle that type of responsibly at this point in my history and treatment, but that’s hardly common.
– Natasha Tracy
Herb, I admit I did not read through to the end of your post. However, I became annoyed. So, it’s my fault for not doing research.
There are no computers to do research on while involuntarily committed in a hospital’s crisis stabilization unit. I was given a handout from the nurse on the new drug I was to start -after my visit with the psychiatrist. (Have you ever tried to read and comprehend one of those things while in a psych facility? -and no, the staff is way too busy to sit down and explain it all too you!)
A new psychiatrist each of the 3 or 4 days you are there, psychiatrist number 2 just goes along with whatever the psychiatrist did the preceding day. How do adapt to a different doctor each day -only seeing them a few minutes- let alone ask questions and comprehend answers?
I went in taking Zoloft for depression & Clonazepam for anxiety (prescribed by my general practitioner because at the time I was not seeing a psychiatrist). The psychiatrist I saw took me off Clonazepam (a benzodiazepine), which I’d been taking for a couple years, without even telling me. He also prescribed Abilify (an atypical antipsychotic).
Of course, I could’ve refused the medication. But, to do that means being written up as uncooperative. That label can be an issue when you’ve been committed for a psych evaluation. So I swallowed the pills.
After my release, I was escorted to a stairwell that emptied out into a parking lot. At that particular time of day the staff was too busy to escort me all the way to the front of the hospital. So I was dumped out into a parking lot to cut across myself to the entrance. I left with no medication -just prescriptions.
I left with a prescription for Abilify with no way to pay for it! Jobless. No insurance. And the psychiatrist knew this. But, he did his job. Evaluated me and gave me prescriptions.
Several days off Clonazepam and on Abilify (along w/ Zoloft) and I was more agitated than when I was involuntarily committed on a psych hold for self-harm! With no ability to pay, I didn’t bother filling the Abilify script -so I abruptly quit that med after taking it for several days. Most likely I started taking the Clonazepam again -though I don’t remember.
Confused, hurting -I didn’t want to know anything more about Abilify for a long time. Last year, my doctor, psychiatrist, and therapist all suggested I try an antipsychotic. But, now I’m too afraid. Even though I like my doctors, there’s a part of me that doesn’t trust anyone when it comes to medication. It’s passed out and prescribed by some psychiatrists with little regard for ensuring the patient understands much of anything about it… or will even have access to it! It seems so often doctors just prescribe, prescribe, prescribe and laugh with the smiling drug reps when they pop in, while patients wait for their appointment.
I eventually did research Ability, etc. I listened to my current doctors. I’m too afraid. I’m too afraid to try it. When doctors don’t take patient concerns seriously, when they don’t bother to provide information in the first place, it damages trust.
So, then I visited your blog, Herb. I learned from you are bio blurb that you are advocating for your wife. Have YOU ever suffered w/ a debilitating mental illness? Have YOU ever tried to understand those wordy medication hand outs while hospitalized? Your wife is very fortunate to have someone by her side. I don’t have anyone. I have to make life-altering medical decisions regarding my mental health by myself -even when at my most ill.
I blame myself for a lot already. Please do not blame me for doctors not doing their job.
~rl
Sorry for rambling -these aren’t good days.
Hi Natasha
Thanks for taking up my question and making a whole post about it! And thanks for the very nuanced answer. You are right that in the hospital things are different and the seriousness of the crisis warrants these measures. I wished very much back than that something would stop my obsessive suicidal thoughts, and if the Seroquel had worked for me I would not have been as critical. I guess it works for some so it’s worth trying. I was lucky that there were no negative effects anyway, probably because the dose was quite low. It’s a really hard call, up to what point should the doctor be honest but risk non-compliance or neglect mentioning the possible serious side effects so the patient has the chance to get better on it. By now I have learned the hard way that it’s necessary to deal with side effects and keep sticking to the meds for a while, but at first this was very hard for me, in particular during the better phases. But then, it’s also worked for me to not keep a well-working med because of unpleasant side-effects as it led me to another med that works just as well but where the side effects are more tolerable. So much trial-and-error, but so little one can do about it except keep faith that the right med or combination is found at some point… But anyway, to get back to the point, I wish there were a little more honesty, together with clear explanations why it should be tried anyway, and side effects should be properly monitored.
Leah
Hi Leah,
You’re welcome :)
“if the Seroquel had worked for me I would not have been as critical”
Yes, that’s generally the case. When the treatment works it’s always worth it and when it doesn’t it seems like it wasn’t worth it. But unfortunately, the only way to find out if it works is to try it. Life’s just kind of a bitch that way.
“By now I have learned the hard way that it’s necessary to deal with side effects and keep sticking to the meds for a while, but at first this was very hard for me”
Yup. I totally get that. There’s this idea that we can all have “successful treatment” and “normal lives” like medication is magic. Of course, it isn’t. It’s all just what works better for an individual. Side effects are often infinitely better than the crazy.
“I wish there were a little more honesty, together with clear explanations why it should be tried anyway, and side effects should be properly monitored.”
I agree completely. Which is part of what I mentioned to Psych Resident (commenter). And, not to be too self-promoting, but I’m working on an ebook right now about relationships with doctors. I’m hoping it will help people get the information they need from their healthcare providers.
– Natasha Tracy
Over 20 years now of time spent in the system and seeing various doctors, my opinion of what they are doing has become very sceptical.The first 10 years after two extreme psychotic episodes,I was diagnosed with Schizophrenia. It was my CPN who advised the doctor that I had bipolar, so he agreed and took me off the anti-psychotic injections that I had been on and gave me lithium, still suffered the tormenting depression so threw in 60mg of Prozac. The tormenting depression kept coming back, as it still is. I was never told by any professional that mixing that type of anti-depressent with lithium was very unsafe. Recently have been back to see the doctor, the mood swings have become pretty torturous. He didnt do much talking and just tried to perscribe me another mood stabaliser to go on top of the one i,m already on.
Can really trust this guy or any other doctor? apart from not being able to diagnose me properly in the first place, he put me on drug combination for 10yrs that is seen unsafe.
I sometimes wonder are they covering there own backs by perscribing drugs, just in case…???..
Hi Rob,
Well, I’d say skepticism is good, but a complete lack of trust probably isn’t.
It’s an unfortunate fact of life that people with bipolar disorder often take up to ten years to be properly diagnosed. This isn’t necessarily because the doctor is doing anything “wrong” per se, just that we’re a challenging bunch because we present with some symptoms that suggest one disorder when really we have another. It’s far from ideal, but it’s reality.
Again, I don’t mean to sound defensive of the medical community, but people with psychosis get antipsychotics, bipolars included. Many of us are on antipsychotics when we don’t suffer from psychosis at all. They are just an effective treatment for some people.
That being said, for bipolar, lithium is pretty much always the first medication trial. And mixing an antidepressant with lithium is pretty common.
The problem with people who have depression as the main bipolar feature (as I do) is that the mood has to be stabilized _and_ lifted. This is a very hard thing to do.
I recommend you take a look at psycheducation.org This site is specifically for those with bipolar II (which isn’t you) but much of the information is broad-spectrum bipolar information and all the information an mood stabilizers isn’t bipolar type specific: http://psycheducation.org/depression/meds/moodstabilizers.htm
That will give you an idea of what standard treatment looks like and what your options are.
Hopefully that can sort out some of the confusion for you and it will give you something to talk to your doctor about. Understanding treatment and medications is hard, but my advise is to ask a lot of questions. You should always be able to understand what you’re being given and why. It’s your right.
– Natasha Tracy
When I prescribe an atypical antipsychotic medication, I tell the patient what I hope it will do for them (say, help them to organize their thoughts if they are psychotic, help them to slow down their thoughts if they are manic, help to improve their mood if they are depressed, help to improve behaviour in a dysregulated child), and that the most common side effects include metabolic changes (weight gain, possibility of diabetes in the long-term) and stiffness (if your muscles feel funny, call me right away).
I never discuss, in psychiatric medications or any other medications, whether or not a med is “off-label” — what’s the difference? Many (most?) of the medications prescribed these days are off-label. Pediatric medications are nearly always off label. Old medications aren’t going to have new trials done to give them new official indications. We use what works! With antipsychotics in particular, I might say something like “This is from a class of medications that are called antipsychotics, but they are used for a lot more than that.”
What exactly is that the doctors aren’t “being honest about” that makes you angry?
Hi Psych Resident,
Obviously you feel comfortable with how you discuss antipsychotics with your patients, which is good. I can’t tell you the number of times antipsychotics have been prescribed to me (multiple doctors), however, with no talk of side effects whatsoever (outpatient).
I believe it was actually more than a year in that I finally heard about tardive dyskinesia, which I only found out about through my own research. TD (as you know) can be permanent even after the person stops taking the drug. And doctors really think a permanent, lifelong side effect isn’t worth mentioning? Really? If that isn’t dishonest, I don’t know what is.
And no one ever mentioned weight gain and certainly not diabetes. And no doctor ever tracked my weight (until very recently). Seriously, you think that appropriate care?
Regarding off label use, I know you think it’s no big deal because so many meds are used off label, but the average person doesn’t know that. The average person has the right to know that they are taking a drug the FDA hasn’t approved for that use. I’m not saying you shouldn’t prescribe it, but to not even mention it _is_ dishonest. You could say, “this medication hasn’t been approved by the FDA for this use but in studies this medication has been shown to be beneficial,” for example. That would be completely reasonable _and_ honest. And if gives the patient the chance to ask questions like, “why are you choosing this drug over FDA approved ones?” for example.
As a patient, it is our right to do that sort of thing. It is our right to know what we’re taking and why we’re taking it. It’s our choice and this information and these questions are the basis for _informed_ choice.
As I mentioned, in the hospital, the rules are a little different due to the emergency of the situation, but in general, patients aren’t told enough information and, quite frankly, they should be ticked off about it.
– Natasha Tracy
The reason I don’t ever bring up Tardive Dyskinesia is because it was common in the era of large doses of typical antipsychotics, but is nearly extinct now. With the doses we use of antipsychotic medications now, it’s not thought to be a real risk — and it’s pretty scary to talk about. We are also SO careful with extra-pyramidal side effects now: if somebody develops any of them, I’m likely to switch or discontinue the medication anyways. And TD is basically the end stage of years and years of extra-pyramidal effects. I just don’t think it’s a real risk for the vast majority of people that I’m prescribing antipsychotics to — that’s why I’ve never mentioned it to a patient.
The off-label stuff is probably a little different for me because I live and work in Canada, so FDA approval doesn’t matter to me as much. What matters to me is whether evidence shows that a med works — and that’s how I prescribe _every_ medication that I give. Lots of the time I don’t even know what drugs have FDA approval for what, because it’s pretty random and irrelevant to me.
Hi Resident,
I can appreciate you think TD is “virtually extinct” but as one who experiences movement issues from antipsychotics and as one who knows of at least two others with full-blown TD, it doesn’t seem too extinct to me. And I haven’t been on high doses of antipsychotics _ever_.
And I would suggest that talking about extra-pyramidal in serious terms actually tells people what to look for. Yes, sure, “tell you doctor about side effects” is a perfectly fine thing to say, but realistically, we all experience far more side effects than the doctor ever hears about because of time, memory and personal triage. And gosh, it would be awfully nice to know that movement disorders are serious so that if I have disordered movement I know it actually is something to prioritize.
Yes, TD or extra-pyramidal symptoms in general _are_ scary which is exactly why they should be discussed.
Actually, I live in Canada and have primarily been treated here. I could talk about Health Canada but that would alienate most of my audience. I’m not sure why you think that abdicates your responsibility regarding approval. Health Canada approves things (or not) just like the FDA. Approval actually _does_ matter. Research is good. Great. I look at it all day long. But that doesn’t mean approval doesn’t mean anything and it _certainly_ doesn’t mean that _patients_don’t_have_a_right_to_know_.You don’t get to make a unilateral decision about whether it matters to the patient. The patient gets to decide.
Doctors and patients need to work together but that can’t happen if doctors insist on hiding really bad tasting Easter eggs all over the place.
– Natasha Tracy
My concern with anti-psychotics, particularly Seroquel, is that far too many doctors are using them as a primary treatment for EVERYTHING including insomnia, depression, postpartum depression, ADHD, etc, BEFORE they ever even try antidepressants or other medication, in both the inpatient and outpatient settings. They completely disregard warnings, such as the one that states the medication should not be given to the elderly with dementia because it can cause death.
I understand someone in the hospital is in crisis, but if the patient has never received treatment before, I personally think starting with an anti-psychotic is serious overkill, especially since no one yet knows the long term effects of the newer atypical anti-psychotics.
While a person may not be mentally aware enough when they’re hospitalized to ask all the pertinent questions that should be asked about the medications prescribed, I certainly agree with your last paragraph that it’s our responsibility to ask questions when we can because we’re the ones with the most invested.
Hi Sid,
I would agree, that, in many cases, prescribing an antipsychotic as a first-line treatment isn’t appropriate. But in the defense of doctors, that is not their practice. In every piece of literature I’ve ever seen antipsychotics are not first treatment choices for bipolar, depression or ADHD. I can’t comment on their specific, in-person prescribing practices, but it certainly isn’t policy. (And some of this policy is driven by cost. I believe doctors pretty much always have to try an SSRI first for depression.) Barring certain exceptions where psychosis is involved.
I agree, from what I can tell antipsychotics are overprescribed. I think this is just a prescribing trend (or, perhaps, fad). It happens in medicine. There are “wonder drugs” that everyone prescribes for a while. I’m not saying it’s right, I’m just saying it seems to occur.
The one thing I will say about antipsychotics is that at low doses they post relatively little risk and can be used for things like sleep without the risks of dependence seen with benzos. You see this a lot with trazodone (antidepressant) too. Maybe that’s appropriate, maybe it isn’t, I couldn’t really say.
And yes, we’re invested, all right. And deciding what is right for any given individual is a really tough job.
– Natasha Tracy