In my post below, Things I Wish I Knew, I talked about how I'm uncomfortable with uncertainty, in particular when I'm the one to make decisions for other people and don't really have any way to know the full consequences of the decisions I make for them.
I mentioned a number of things I wish I knew, most didn't draw much attention, but two topics did: The consequences of allowing children to watch video games, and the issue of prescribing novel antipsychotic medications off-label, as opposed to Xanax.
Enough about VideoKid--Spring sports have begun and he'll have gobs of homework as the school year ends, he's looking for a job, thinking about college, learning to drive, it's soon to be a moot point. We're doing our best here and it's an imperfect world, what can I say.
Instead, I'll tell you why I'm more comfortable prescribing a very low dose of a second generation anti-psychotic (usually either 25mg of seroquel or 2.5 my of zyprexa) off label when someone is subjectively distressed---let me call it agitated, it's hard for me to say because I'm not inside their skin. Often these are folks who have bipolar disorder or have an agitated major depression, and the dose of the antipsychotic is given on an as needed basis (determined by the patient) until something else kicks in. I don't think I've ever given this as the sole agent unless the patient has simply refused other medications.
To put it simply, I give these medications instead of Xanax because they are easy to stop. No one gets stuck on them, no one makes me uncomfortable by demanding that I continue to prescribe something that is no longer needed. People take them When Needed (usually a handful of times, or a few times a week). Xanax helps, and people take it a few times a day, maybe it helps so much they take it a few times every day, maybe it helps so much they take it a more than I suggested, and they don't want to stop, and if I refuse to continue to write for it they become demanding, or call repeatedly in distress insisting I MUST give them something, and I'm faced with the issue of refusing to write for it and risking that they'll withdraw and possibly seize, or writing for a medication on on-going basis that I'm not comfortable with, sometimes after it's been escalated to doses where I wonder if the FDA will hunt me down. This just doesn't happen with low-dose anti-psychotics.
Okay, in reality, I never use Xanax, so this has only been an issue when seeing patients that other docs have started and maintained someone on (up to 8mg a day, chronically, ouch!). But if the same patient as above shows up and there is no reason not to, I may use Ativan (lorezepam) or Klonopin (clonazepam) in the same way. I agree, if they can be used in the short term, and if someone doesn't become addicted to them or physically dependent or tolerant, the risks are less. So, I weigh it in my head: Is there a history of addiction? (yes-- no benzos). Is there a history of or current alcohol abuse (punt). Does the patient get distressed when I tell them they can't drink on this medicine? If there is no history of alcohol or benzodiazepine abuse or dependence (they are cross reactive), if the patient has been on a benzodiazepine before and had no trouble coming off, if they drink sometimes but have no history of alcohol abuse, then I feel comfortable prescribing a benzodiazapine. I give a small amount, and I tell them it's a crisis medication, not for regular use. I warn that it can be sedating, that it can be addicting. Most people worry about that: it's a good sign. It's the person who assures me that he won't get addicted that I worry about.
When I use a novel anti-psychotic, I tell the patient that it is a low dose and that the medication is associated with precipitating/fast-forwarding the onset of diabetes, lipid dysregulation, and weight gain. I suggest they take it only when needed and that they stop as soon as possible (there is no withdrawal to low doses). One of our commenters said that even low doses cause difficulties, even "kill" (I assume this means weight gain, diabetes, dyslipidemia)-- this may be, but in my personal experience, I have not seen problems with periodic low dose medication. Maybe I've simply been lucky to date.
I don't insist that anyone take any medication they don't want to take. Nor do I recruit patients, I'm an outpatient doc, people come to me, often asking for medication. I have never said to a patient "If you won't take this medication, I won't treat you." I tell them what the studies show, I tell them what I think they should do, if they don't want meds and they still feel helped by coming to see me, I see them.
We live in a society that values the right to make choices, even bad choices. We allow people to smoke and to drink alcohol, despite the fact that the risks they expose themselves (and others) to are both huge and certain, the cost to society exorbitant. It is unfortunate, perhaps even tragic, that we don't have medications with no side effects or ugly adverse effects and I wish that weren't so, it would make my job so much easier. But given the options we have, when I see someone in distress, I'm faced with what I know-- and that is full of uncertainty . Will this medicine make you sick? Will you have a recurrence of your illness without it? Will you have a recurrence anyway AND get sick if you take it? Given that there is no free ride, the other option is to refuse to prescribe, and that carries with it lots of other risks, the denial of something that often helps, and the message of there is no hope if you can't be patient-- and honestly, therapy alone, even great therapy, doesn't always do it. Mostly, I'm left to share what I know with the patient-- including statistics if I have them and if it's appropriate-- but ultimately the decision belongs to the patient, and when they leave it to me, I cross my fingers and do my best.
So no one wanted to comment on the rise in teenage suicide following the black box warning?
72 comments:
Dinah, great post. You raise some really important and valid issues.
On the flip side, as a patient, I adamently (sp) refuse to take both Seroquel and Remeron. When I take them I feel miserable. But more importantly, I know that if I'm able to fight with my pdoc about taking the meds, I know I'm not *that* ill. It's when I capitulate to his recommendation that I know I'm up a creek without a paddle.
Good point on the issue of addiction - I prefer not to take meds if I can so help it, but that means being aware of other potential triggers... but for me, that's worth the trade off.
I take Seroquel (250) an hour before bed. I know almost nothing about problems with it, which seems a shame. I would like to know.
I also take Carbemazepine (200) morning and evening. Plus propranalol (20) as needed for tremor.
If I don't take Seroquel and Carbemazepine, my sleep falls down to the 4 to 5 hour per night range and at that level I am soon so sick that I am non-functioning. Even 6 hours per night is too low, I cannot control my emotions at 6 per night.
It's gotta be 7 to 8 hours or, bad scene. It's probably a result of the anxiety which is co-existent to tremor.
Add in that I've got one of the genetic tremors and so of course have the anxiety problem which almost always co-exists with the familial tremors and the thing becomes what it is.
I do not know if there is path other than the one I walk. Mind you, I would still like to know the risks.
I know people who refuse the anti-psychotics, based on the fact that they don't want to risk "getting fat". Yeah...so they'd rather make everyone else's lives hell, including husband and child and p-doc.
Rach's point about being well enough to argue? I read up on meds insatiably. Before I take it I want to know all about what it can do, good or bad. I want to know what other reasonably intelligent users (like Jerod at www.crazymeds.org) have felt or read.
Ultimately though, I trust my p-doc. That has to be the most important thing. Yes, I feel shit. That's why I see him. Yes, almost every psych drug there is has nasty side-effects. Some are worse in some people than others. Lots of what he gives me might make me feel so crap in all sorts of other ways that it's just not worth carrying on.
Seroquel was great at getting me to sleep (only if I took it with vodka). didn't do much else good. Bad side was such vivid nightmares that sleeping was less restful than being awake. Does it count as self-harm when you throw yourself out of bed onto the floor while dreaming that you are on horseback and being attacked by snakes?
Risperdal isn't doing any good, but not too much bad either.
Zyprexa, Geodon, Abilify...nada.
Sooner or later though, he will find some combo that works for me. Once I am not overtly suicidal on a daily basis, I will deal with the rest of the effects. And trading diabetes for depression - would do that instantly.
Sometimes though, the s/e's are strange. He tried me on Provigil. Carefully...took BP, sent me off to get it, wanted to take my BP again a couple of hours later.
Umm. I fell asleep in the waiting room. Very humiliating.
JW - start with drugs.com and crazymeds.org. Also, some of the links from Dr Goldberg at psycom.net/depression.central, while not addressing drugs directly, lead off to other good reference sites.
Quote from a hospital shrink doing a meds consult: "The risk of diabetes is NOT dose dependent with the novel AP's". I was trying to push for a lower dose of Seroquel to limit weight gain and disease down the road. This shrink said that yes, even people who had not gained much weight could develop diabetes from the drug.
I have never begged a doctor for Xanax, have never tried it in my life. I do know that a lot of doctors worry so much about addiction and much less so about other really life threatening side effects. They don't much care if they convince you ,however subtly, to take a dangerous drug because the only thing they can be sued for is failure to do regular blood tests to see if trouble is brewing or has already begun. Do not forget that doctors have a great deal of power over many patients who view them as god like. If that were not so then you would not have a poster telling you that he or she takes 250 mgs of Seroquel yet knows "almost nothing" about the problems.
If you are really giving something for short term use until other drugs kick in, then why are you afraid of Klonopin? That is really not terribly addiciting in the short term and just because a patient begs for more hardly means you have to dole it out. True, it is not as good a knock out drug as some of the AP's can be, but 25 mgs of Seroquel does not do much to touch an acute bipolar episode. The very sad reality of Seroquel is that at proper doses, it works really, really well. Rat poison works really well on rats too, but I wouldn't take it unless I was ready to pop off.
Ah...but rat poison also works really well on people with deep vein thrombosis and other blood clotting problems. Of course, it's marketed as Warfarin rather than Rattex.
The use of atypical a/p's still gets down to a very basic point. It's a heck of a lot easier to treat a live diabetic than a non-diabetic, skinny suicide.
For Dinah - the latest Medscape psych newsletter has an article for you on 'Change in DST may cause medical device errors' !!
http://www.medscape.com/viewarticle/553146
Rise in teen suicide following the black box warning - prolly cuz docs started flipping and worrying about parents suing them for their child's suicide - this would especially be true for GP's and peds who prescribed antidepressants for kids rather than psychiatrists, I would assume. So then they probably slowed up on prscribing the antidepressants, leaving a lot of depressed children without anything to help them - and those kids, ironically, attempted suicide anyway because they weren't on an antidepressant.
Sad...isn't it?
Jcat, I think you have to consider that the right decision for you may not be the right decision for other people. I was one of those patients who said no to any psych meds that had a side effect of weight gain. It may seem stupid. It seem shallow. It may seem ridiculous. But, I was a fat kid. I was in Weight Watchers at age 10. I really think that my problems with weight led to my problems later on with depression. The psychiatrist I used to see only knew me as a thin twentysomething female who struggled with depression. He didn't know me as a fat kid and all of the pain that goes along with that. Therefore, the possibility of weight gain from a psych med probably didn't seem like a big deal to him. However, I knew that if I ended taking a medication that put me back into the fat category that I would be compounding my problems. I think I made the correct decision for me. We're all individuals with different lives and different experiences.
did you get my comment?
It appears not. What I said was that I just discovered your blog and was happy to find a psychiatrist being so thoughtful about how they prescribe. I was not so lucky with my psychiatrist. I am addicted to 3 mg of Klonopin and have been addicted (yes, addicted, contrary to popular belief) to 11 mg of Risperdal and 50 mg of Seroquel. I have been in the process of a long a painful withdrawal for the past several years. I did not need these drugs, I was simply ignorant and having unpleasant emotional symptoms that I was unwilling to deal with in a more natural way. I also simply had no alternatives presented to me.
I encourage you to look at the psychiatric-survivor movement. There have been hundreds if not thousands of people who have had to get off of these poisons.
I'm glad you are careful in your prescribing of these meds. I applaud you for it. But I will never take Seroquel again. My blog describes my journey on and off these meds. I can say that I only needed them once after a hallucinogenic drug induced mania that left me with a diagnosis of bipolar disorder for 22 years. I'm unraveling myself from that diagnosis now.
I will continue to follow your blog. Good work.
Anon - I am fat. Started off fat, got thin, got fat, got perfectly thin. Got fat, part of it from meds. It might contribute towards some of the negative feelings, but I don't think it's a cause.
Yes, everyone has to decide what is more important to them. From my point of view, I can deal with fat when i'm not suicidally depressed for 361/365. If vanity is what makes you happy, then great.
Same as with all the side effects - once I find a med that works, I can sort out any resultant health issues. At least I might be alive to do so.
I want to add something to my comment. I've successfully withdrawn from 50 mg of Seroquel, 200 mg of Zoloft, I've gone from 11 mg to 1 1/2 mg of Risperdal and from 400 to 350 mg of Lamictal. I'm still on 3 mg of Klonopin. (I was on as much as 6 mg when you take into account PRN's) I have had no sign of relapse and no worsening of symptoms other than exhaustion and fatigue...the body has to heal from withdrawals. On occasion I've had to deal with withdrawal specific symptoms which resolve once I stabilize on my new dose. Many psychiatrists become alarmed during withdrawals when people experience symptoms which are not signs of relapse, but interpreted to be and hence drugs are reinstated. If diminished in minute doses withdrawal can be quite safe. Other support systems should be in place as well.
I have instead of problems had vast improvement in cognitive functioning. Nothing but good is happening as a result of my whittling away my drugs.
When I needed medication in a bad way, it was early 1998 and the two "best" choices were Zyprexa and Risperdal. My psychiatrist told me to go home, read up on them, and report back on my preference. I was just barely 18 and off on another planet most of the time, but I guess I still had enough wits about me that he trusted me with this decision.
I chose Zyprexa because Risperdal's published side effect profile included pseudo-lactation. The worst thing on Zyprexa's list at the time was a prolonged QT interval, which after some more research struck me as infinitely less embarrassing than, um, mammary leakage.
I have a family history of diabetes (the genetic "type 1.5" kind), so once the information on Zyprexa and diabetes came out, I began to worry. Once there was an alternative available, it was goodbye Zyprexa, hello Abilify. And suddenly I was awake and skinny again, instead of sleepy and curvy.
Sometimes I look back on my medicated days (what little I remember of them--Zyprexa also interfered with my long-term memory encoding) and am upset that it all kinda sucked. But really there weren't a whole lot of options; we did the best we could; and at the very least, I survived a very frightening period of my life, even if it cause me to develop a very special relationship with nacho cheese Combos.
Gerbil - agree absolutely. Love them or hate them, big med companies are throwing lots of money at psych problems. Eventually, they are going to come out with more meds that fix more problems with less damage. It's a question of keeping in the fight until there's a good weapon that does the trick for you.
I'm BP2, and TRD. So the main reason for the a/p's is to get them to punt the a/d's into action.
Abilify did zip for me. Zyprexa did for a while, ages ago. Currently on low-dose Risperdal; when we tried upping the dose split am/pm, I turned into a non-sleepin zombie (Leponex might have been contributing), but at low-level it's doing nothing.
Not even the uhhh 'mammary assistance' There's also Espiride, which is used a lot in SA for low-level depression, and PND. Also with a known s/e of lactation - in fact it's other big market is for insufficient production. It's also popular as a nice a/d to sneak in under others to boost them. P-doc tried it with me while changing over on big gun drugs. You gotta know, I checked for the lactation bit about 10 times a day! Luckily enough no milk, but did result in at least a cup size increase. And that hasn't gone away yet.
Between ECT and meds, I know I have loss of memory - although I actually was doing fine on a day to day basis.
As you say though 'we did the best we could; and at the very least, I survived a very frightening period of my life, even if it cause me to develop a very special relationship with nacho cheese Combos.'
Abilify sounds like you've found your good one - I'm sure you'll divorce the nacho cheese combos soon. If you are alive after the illness, fixing the side-effects is almost always possible
You go! Enjoy the awake and skinny, now that you've got some good side effects for a change!
Jcat--actually I haven't been on any psychotropic medication for almost two and a half years. Although when I became ill at 17 it looked like schizophrenia and I received a tentative diagnosis of such, it turned out that the psychosis was actually a manifestation of something else.
Even so--I still take three different prescriptions daily for allergies and asthma, and I know the ins and outs of almost every prescription allergy medication that's been out since 1983. You bet your bippy I pore over the monographs that the pharmacist forgets to remove from the packaging!
ps Combos still rock my world.
Interesting - the one med I hear about causing pseudo-lactation a lot here is reglan (metoclopromide) which is used to promote gastric emptying (reflux) - but also has antiemetic effects and unfortunately has a lot of neuro side effects for some. I'm on domperidone (motilium) which is the only other med out there similar to reglan, but without the neuro side effects. It is not available in the USA, so I have to get it from Canada...but I can't live without it - because of having such delayed gastric emptying and nausea/vomiting. My doc did say he had one patient have pseudo-lactation on the domperidone, but fortunately I have not!!
When I first was hospitalized for any extensive period of time for headache, I was started on nortriptyline (pamelor), which dropped my headache from a 5 to a 2 in a day's time. I was on it for like 24 to 48 hours, and my mom had looked into it and saw one of the big side effects was weight gain. So we talked to the neurologist who prescribed it, and we said we were concerned about this side effect and that I didn't want to be on a med that caused weight gain. So he took me off it (in retrospect, I cannot imagine why he would have done this - I have a rare, intractible headache type that actually responded to something...and he changed it without even a second thought!) - and put me on topamax. At just 25mg of topamax the first time around, I had some side effects so my neuro pulled me off that and put me back on the pamelor. This was all before I went to a headache center.
I used zyprexa as a headache abortive, and when things would get really bad with the headaches but I'd have to wait for a certain period before being hospitalized again, they'd have me take it daily. I did actually gain weight - even with intermittant use of it, but that was a moot point frankly - it didn't help my headaches - just knocked me out so I slept for long periods of time and I didn't feel the pain. Thorazine later did the same thing when the zyprexa stopped helping. But you know what? Zombies don't have headaches! lol....
I gained weight mainly from steroids and the meds like zyprexa, depakote, geodon, and others.... I would have to say that outside of the steroids, the antipsychotics and depakote caused the most weight gain - the tricyclics caused me to gain about 10 pounds that I couldn't shed.
If the headaches improved, I'd tolerate weight gain. But in the end, nothing has helped - so it wasn't worth it to be gaining a lot of weight, too! I had a lot of memory issues on meds like zyprexa and others. It seemed like I'd know exactly what was going on at the time, but then the next day, the day prior was completely washed out. This happened on several meds that I took daily. So many things became a blur... Made me feel sad - like I was just floating through my life, but not living it.
Now - I'm not on anything like that. But the headaches cause a lot of memory problems as it is. And I have some left over memory problems from certain meds I took. It's tough - have to always weigh the benefits versus the risks. I would have tried anything if it would have made the headaches more manageable - I think that's why I took so many things in spite of their bad side effects. And when they didn't help the headaches, then the risks outweighed any benefit - since there wasn't any benefit, so I'd come off them.
What a ride...what a ride...!
Hey, I really appreciate your blog. I worked on an acute inpatient unit and noticed as the docs began to use more and more of the atypicals in the evening to help with sleep. They also seemed to use it in low doses to help with b/p mixed state, or acute manic episodes. Like you mentioned, even what seems to be extremely low doses really helps the agitation. I'm all for that as opposed to the addiction possibilities, not to mention rebound mania/agitation-yuck!
Jcat, you are not understanding my point. Being thin may be strictly a vanity issue to you, but it's not necessarily that to other people. Being a fat kid caused me a lot of emotional pain (and some health issues), as it does a lot of other kids. That's not insignificant. Being fat is an okay risk for you, but it wasn't for me. I don't think it helps the discussion to belittle other people's choices.
Anon, not intending to belittle your choices. As I said, I've been a fat kid/teen/adult myself.
My point is that for me - and others here as well - until there is a perfect med we will live with the side-effects of what's available. Because it means that at least we might be alive to take the perfect one.
NeoNurseChic said...
Rise in teen suicide following the black box warning - prolly cuz docs started flipping and worrying about parents suing them for their child's suicide ...
Well, you might be right, but before I draw a bow the length that the APA spokespeople seem to be firing with, I'd want to know a bit more.
Like
(1) Is there any evidence at all that pediatric prescription of SSRI/SSNRIs has decreased since the black box warning?
(2) What proportion of the kids completing suicide were on the pills - before and after the warning?
(3) What other changes in the way US shrinks treat kids with depression have occurred since the warning went on (e.g. are they shifting kids to more toxic tricyclics or MAOIs or even - god help them - antipsychotics)?
(4) What other social factors might be increasing suicide rates (e.g. changes in economic stressors or illegal drug use patterns - even increase in celebrity suicides as illustrated by the rash of Kurt Cobain copycats a few years back)?
(5) Exactly how statistically significant is the change anyway?
You can draw a lot of self-serving conclusions by correlating suicides with your pet hate. Personally, I find that sort of exploitation of tragedy pretty distasteful.
I've got nothing against faith-based medicine for individuals. But when it comes to public policy I expect to see evidence.
The mass of Cochrane Review standard randomised controlled trials that showed no significant therapeutic justification for pediatric SSRI use - but did show a highly significant fourfold increase in suicidality was evidence.
A bunch of APA shrinks speculating about a causal link between a label change and an upswing in suicide rates is not.
Michael,
Correction: it is not the APA that is declaring the rise in teen suicide rates, it is the CDC. You asked 5 important questions... if you really want the answers, troll around on the CDC website to see which ones are there (I started, but then fell asleep).
For #1 (did teen SSRI Rx really go down), look at the link to the FDA hearing testimony that I posted on here. I recall some of the testifiers commented on this.
For #3 (did docs start rx'ing other meds), I can assure you (though I have no data) that if pediatricians and nurse practitioners (the #1 prescribers of SSRIs in kids) got spooked about prescribing SSRIs to depressed kids, they did NOT start prescribing TCAs, MAOIs, and atypicals. Mostly, they would have made a referral to a psychiatrist, which a large proportion of people likely did not follow through with ("I'm not crazy; I don't need a psychiatrist").
Happy hunting!
Thanks for that Roy.
I'm downloading now and I'll let you know what I find out over the weekend. The only data I've seen so far is this study, which ended at about the time the black boxes started, so I'm prepared to plough through 150 pages of FDA prolixy to get some up to date info.
"Correction: it is not the APA that is declaring the rise in teen suicide rates, it is the CDC."
The CDC is reporting the data - which I'm not questioning.
APA folk like David Fassler are interpreting it without doing proper studies - which I am questioning. He hasn't even given evidence for correlation - much less causality - so you can see why I take his statements with a shaker of salt.
Considering Fassler's earlier apologia in which he puts 'clinical consensus' on equal footing with controlled trials and rather deceptively states that "there is more evidence demonstrating the efficacy of fluoxetine (Prozac) than there is for the other medications in this class" - without mentioning that the evidence for pediatric Prozac use is slim (10%) while for other SSRIs its non-existent, I'm not sure that he would ever be my first stop for interpretations of medical evidence.
Not sure I'd agree that the docs frightened off SSRIs (if there are any) wouldn't go to MAOIs or tricyclics. If NeoNurseChic's suggestion is correct - that its legal rather than therapeutic considerations forcing their hands - anything that doesn't have a clear patient-readable warning that might prompt them to call a lawyer following an iatrogenic outcome would be preferred over the SSRIs.
Do MAOIs and tricyclics have black box warnings in the US?
Note that here in Aus, not even SSRIs have a black box. Medicines Australia has successfully resisted pressure to give patients that sort of information, just as they sunk proposals to publicly declare payments they make to doctors. Should be interesting to see if youth suicide trends here have followed those in the US.
Hey there - I'm not trying to make some official statement - just random speculation based on the nature of US medico-legal environment, really! Over here, when black box warnings come out, people start running to class-action ambulance chasing lawyers en masse... (Check out stories on Vioxx, and others...) And, if you read around the medical blogosphere, you'll find that fear of lawsuit forces the hand of a lot of medicos out there...and rightfully so. We all want to help people, but none of us wants to have our entire lives ruined by someone who is sue happy - so it's caused a lot of defensive medicine to take place - at least in the US.
I typed that above paragraph just because Dinah seemed to be looking for someone to comment on the rise of childhood/teen suicide after the black box warning on SSRIs - I didn't spend hours researching it - just made a random, casual speculation.
That's all!
Carrie :)
What I liked so much about Dinah's post is that it doesn't generalize. It addresses patients as individuals. I wish that all psychiatrists went over the risks/benefits of taking a particular medication. Unfortunately, all I ever heard from the psychiatrist were the drugs' benefits. When I look at all the lawsuits against Eli Lilly that tells me that there are plenty of people who are saying, If I had known I was at risk of developing diabetes then I would not have taken that drug. Those voices are just as valid as those saying their lives have improved. Patients have to be told risks and patients have to be the ones who make the decisions. There are many people who are willing to accept the risks but there are also plenty of us who would not.
The very last anon comment there made me think about something. When I was diagnosed with avascular necrosis and learned that the reason I got it was most likely repeated steroid tapers - both oral and IV, I was a little upset. I wished I had known - and it's not like I would have never tried steroids. But in the year before I was diagnosed with AVN, I was using prednisone tapers roughly every 6 weeks - and the reason why was that it would give me maybe a day to a week without cluster headaches - wouldn't touch the constant migraine I have - but gave me a few days without sleep-interrupting, head-banging clusters.
Was this enough of a benefit to risk avascular necrosis? I did not know that AVN was a risk of repeated steroid use. (As it turns out, it's very uncommon and also doesn't usually happen with intermittent doses - but research has identified at least one person who got AVN after just a single steroid dose.)
At first - I was angry - I wouldn't have done all those steroid tapers - especially in the last year, if I had known that a devastating bone disease was going to be the end result. It made me so upset - the pain and resulting complications of my bones was not worth a day or two without clusters and no improvement with the constant migraine.
But then I read this book - nothing to do with headaches at all actually - called Hannah's Gift by Maria Housden - a story about her 3 year old daughter who died of cancer. And one of the chapters struck a serious chord with me. I actually read the chapter, stopped, and showed it to my mom - and it really hit her, too. The doctor who was giving Hannah's parents Hannah's diagnosis also had a daughter with cancer, and he offered them one piece of advice: There are many times down the line when you will ask yourself why you made certain choices. You will repeatedly say, "If only I had known this, then I wouldn't have made this decision..." But - just remind yourself that you made the best decision that you could with the information that you had at that time. Everyone wishes they'd known everything sooner, but the fact of the matter is that you'd never make a bad decision for your loved one - so you have to trust yourself that you've made the best decision you could have with all the information you had. There is no point in saying, "What if" or "If I had only known...."
I was suddenly at peace with what had happened. So was my mom. I know it wasn't about cancer, but the words fit our situation perfectly. And I have used those words many times since - with parents of babies, with fellow sufferers, and many others.
Maybe the diabetes complication of zyprexa is like that. It doesn't happen to everyone. And the person who gets it may be beating themselves up saying, "If only my doctor had told me this was a possibility" - just like I had wished my doc had told me that AVN was a possibility of repeated steroid use. But - if my doctor had sat down and read every single possibility - even the very serious ones - at the time when they were offering that treatment, to tell the truth I probably would have waved my hand and said let me have them - I wanted relief and I couldn't see past my current pain! And if docs constantly read every single possibility for every treatment (even those that happen <0.00001% of the time), patients won't ever want to do anything! Not saying that patients don't have the right to know - they TOTALLY do - but just that I think it's important to hit patients up with the benefits, the risks - the major side effects and so on - and maybe, if the patient wants to know what very rare possibilities there are - that too. But even if I'd had all that information, I probably would have taken the steroids anyway - the potential benefit was greater than my perceived risk (no matter how large) of getting AVN.
It's not easy to make decisions when the choices are bad or maybe better, maybe not, and possibly better with another problem added or possibly not better with another problem added. To tell the truth - those odds suck...they really do. But we all are doing the best we can with what we know. Nobody can foresee everything that will happen in the future. We just have to weigh all the benefits and risks, cross our fingers, and hold our breath - it's a scary game, but unfortunately one that many of us have no choice but to play...
Take care,
Carrie
Not taking a drug because of weight gain does not necessarily equate to a vanity issue. I had always been thin, and the extra 20 pounds from Seroquel, while unwanted, did not make me obese. The problem is where the weight is centred (around the centre) and the associated health risks and metabolic changes.I maintain that it is not in any way normal to gain 20 pounds in under 2 months.I was sitting in a local Starbucks a couple of years ago with friends and looked over to the next table to see an attractive young woman with glossy brochures pitching something to an older guy in glasses who reminded me of one of my old profs. I saw the words Astra Zeneca. I asked her if she was a drug rep and she looked at me in shock.Maybe she thought I was being rude, but then again Starbucks isn't the place to go if you want to share state secrets or conduct an affair or meet with your broker. Yes, she was a rep and she was pushing Seroquel to a G.P. I asked her if she was also warning him about the weight gain and she said that most people never gain weight on it. Now of course, that is not true. On the way out, once he had gone, she passed me a slip of paper with the names of two drugs from competing companies that have a much more benign weight gain profile. Note, I said, once her mark was gone. She also said she shouldn't be giving me the info.
In the final analysis, if there were no serious health risks, I would tolerate the extra 20 pounds.
Don't sweat, NeoNurseChic. It's good that you speculated about the possible link and the legal angle sure ain't something to snort at.
My gripe is with people with professional credentials, research resources and an agenda who rush to the media with unfounded, self-serving speculation to try to preconfigure public discussion when they should be trying to collect a bit of data and be measured in its interpretation.
Thanks for the link Roy. A quick scan and a search on several keywords produced nothing on changing prescription rates, but it did draw my attention to this study, which does show a link between adolescent SSRI use and suicide deaths (not just suicidality).
Although they find that for those under 19 years old "Patients who filled antidepressant prescriptions following an inpatient stay were 15.62 times more likely to die by suicide (8 cases matched with 39 controls) than similar patients not prescribed antidepressant medications", the dataset is pretty small and I would suggest that 'more research is needed'. Urgently.
But the precautionary principle sure supports the black box warning.
If you look at summary of the CDC data you will see that the suicide rate increase is in the period preceding the black box warning anyway. So unless you believe in reverse causality ...
Rosack suggests it was "a media frenzy" preceding the warning that did the deed. But all he offers in support is an unsourced claim of "a 20 percent drop in the number of prescriptions written" (where? over what period? to which patients?) that is contradicted by the Kurdyak study.
Its probably worth noting that Kurdyak did find a decrease in pediatric SSRI prescriptions in the UK from 2003, but the overall youth suicide rate there has continued to decline [Spreadsheet] (although there has been a recent slight increase in the UK female suicide rate across all age groups).
I think I'll pass on your offer to trawl all over the CDC data to try to find if there is any real evidence of a link between the black box and suicidality, Roy. I suspect that the drug companies have already done that and if it was there they'd be shouting it from the rooftops. There's a lot of money in this for them after all - even if you discount possible lawsuits.
The suicide-SSRI link (not only amongst adolescents) is always going to fall in a difficult area.
People who are seriously depressed form a high-risk category for suicide already. Often the first result from an A/D is an increase in energy levels, before mood - which gives you just enough energy to go out and do it.
P-doc says he has had one patient, a middle-aged male, who was depressed but definitely not suicidal - and on a moderate dose of A/D became overtly suicidal within 2 days.
It does happen. The figures though don't really show whether the suicides would have been likely anyway. Or how many more there would have been without the SSRIs.
And it's not an easy group to set up a study on either. What do you recruit....'We'd like a bunch of suicidal people to come forward. In spite of having lots of good drugs available, we're not going to give you any, so that we can see how many of you get to off yourselves, or try it' ??
Jcat, its pretty easy to design tests to give a strong indication as to whether the pills themselves are causing suicidality or whether there's a confounding factor.
The most widely accepted gold standard is the randomised double-blind placebo controlled trial that is usually (not invariably) demanded by the Cochrane Review. It was trials of this standard that showed with as much certainty as science can muster that SSRIs do cause suicidal ideation and impulses.
By 'randomised' they mean that subjects are assigned randomly to either the placebo or active group. So there is no pre-existing bias towards, say, suicidality, among those getting the active over those getting the placebo.
The argument that it is unethical to deny treatment to the control group is a common one in psychiatric and psychological trials that is, unfortunately, starting to spread to other sorts of medical trials. It is based on begging the question (i.e. they go into the trial assuming that the active actually helps - not good science). And as we now know, that assumption was almost certainly wrong for pediatric SSRI use and was probably wrong for all SSRI use among under 65s.
The way this issue was usually dealt with before pharmaceutical companies began exerting such strong influence over medical ethics boards was for the subjects to be reviewed at regular intervals and any possible serious effects (or lack thereof) in either the placebo or active group would be considered grounds for aborting the trial and shifting everyone across to the 'safer' of the two groups. This is precisely what happened to the Womens' Health Initiative trials of hormone replacement therapy a few years ago.
Your points about energy levels in depressed people and suicidality vs completed suicide are well made. That's probably what makes bipolar so hellishly dangerous. But the bulk of the data on SSRIs involve suicidality rather than completed suicide, so energy levels are less important.
I'm not yet convinced that SSRIs administered with care significantly increase the risk of completed suicide - but simple prudence (and available data) suggests very strongly that we hold off prescribing them until we know more. The notion that we need to do something, so we should do something that the best available data suggests will make the situation worse, is bad logic and appalling medicine.
"In spite of having lots of good drugs available, we're not going to give you any".
The problem is we still don't have good drugs for depression. That's what the trials have proved - regardless of the experiences of individuals or the assurances of drug industry reps.
In any chronic, long term, non-degenerative disease like depression or schizophrenia (and they have not been shown to be degenerative - in spite of epilepsy style 'kindling' theories to the contrary) over any given period for an untreated cohort you will get about a third saying their condition has worsened, a third saying it has improved and a third saying it stayed the same.
Add a placebo treatment to the mix and you will get closer to 60% reporting an improvement.
So if you give depressive or schizophrenic people sugar pills (or even better - psychoactive placebos) more than half will report an improvement and most will attribute it to the treatment. That doesn't mean the treatment works.
Whether or not you should treat with placebos is a difficult question of bioethics and not one I think I have an answer to. But I'm much clearer on what my answer is to those who administer treatment to those who think it harms them or Rx pills that can be shown to have serious side effects but cannot be shown to work better than sugar.
Actually, I'm of the view that suicidality (and violence) is not a side-effect of biologically suppressing depression without treating environmental causes. Its the inevitable effect.
Depression is a very widespread and longstanding condition in humans that would have been bred out via Darwinian selection millenia ago if it did not have some sort of pro-survival effect for the individual or group. Seems likely that one of those effects is to prevent traumatised, stressed or otherwise ill people from harming themselves or those around them by sapping the energy and drive they need to do it with.
But that's just my opinion and I have no data whatsoever to support it.
Hey Michael - thought provoking points, as always.
The double-blind randomised studies still have one major drawback though. The people who take part in them are ALL taking part in the studies because they are depressed already. (OK, excluding a few, who are taking part in med studies for money - which seems to include quite a few young South Africans travelling in Britain). However the cards fall in terms of what meds or placebos you get given, you're in the study to start off with because you are a likely candidate for the drug type - in this case anti-depressants.
On the Darwinian selection though, I read an interesting article (damn...just can't remember where!) saying something along the lines of : natural selection via breeding actually favours the umm
(political correctness goes for a ball of chalk here...) stupid and less useful members of society, because the one factor that it hasn't yet included is that we don't need cannon fodder any more.
Traditionally, a viable society needed few leaders, whether it be in terms of intelligence, people skills or whatever, but needed far more people who could be regarded as "biologically disposable".
There were more arguments, supporting the theory that bipolar and schizophrenia are prevalent in both the leadership areas and less relevant (to survival of the whole group) areas such as artists and other non-brawn categories, and so while natural selection has continued adjusting itself to produce more "worker" bees, it hasn't bred the sideline diseases that don't significantly reduce population out of us yet.
Have to confess that you're hugely increasing the amount of serious reading I do, just to keep up with some of these discussions!
P.S. posted more on the meeries for your flatmate. No pics, unfortunately - although there are thousands around, i need to get them from the photographers and upload them....
Thanks heaps for the meerkats post, jcat. You not only covered my main points of curiosity about them, you managed to squeeze an amazing amount of humour, pathos and triumph into your potted text-based wildlife doco.
Both my flatmate and I loved it.
Sounds like a pretty challenging and rewarding job. Hope the necessary disinfectant and bandages are all at your employer's expense.
On the randomised trials, the point I was trying to make is that a properly designed trial will have active and placebo groups with about equal need, sensitivity, vulnerability, etc to the treatment being tested. So if, say, significantly more subjects in the active group become suicidal than in the placebo group, there's good grounds for believing that the treatment is inducing suicidality - not the pre-existing conditions of the subjects.
I won't bore you with the gospel according to Reverend Bayes on what a 'significant' result is - but the rule of thumb is 'the rarer the effect, the bigger sample size you need'. That's why completed suicide is relatively hard to pin down in a normal sized trial, but suicidality is less so. So it serves as a surrogate end point for the effect they are actually trying to measure.
This oldie-but-goodie from Trisha Greenhalgh explains the potential drawbacks of using surrogate end points. Her book is still the bible when it comes to trying to make sense of medical evidence.
Not sure I really follow what you're saying about Darwinism.
Homo sap has about a quarter of a million years of adapting to a small tribe, nomadic hunter-gatherer existence. Not too much room for 'cannon fodder' in that social arrangement. The last ten thousand years of settled agricultural existence (for some) is just an evolutionary eyeblink.
So its doubtless true that there are genetic predispositions to diseases going around that were a good idea 50,000 years ago, but not now. One example is sickle-cell anemia. Two copies of the relevant gene kills you young, but one copy provides some resistance to malaria. Useful for people roaming the swamps and jungles of central Africa, but not so cool for an African American stock broker in New York.
That said, there's doubtless been a few genetic adaptations made to large settlement living and 'civilisation', but I doubt such lifestyles have been homogenous enough to promote specific developments towards or away from 'intelligence'. In fact I'm not even sure what meaning such a concept would have outside a specific culture. The sort of abstract thinking that enabled Einstein's work probably wouldn't have been too useful in a medieval farming village and he might have been considered quite stupid compared to someone who had a good feel for when to plant the corn or how hard to hammer the edge of a ploughshare.
I think the best chance for human societies to prosper long term is when they allow for a lot of internal variation that will enable them to better meet unpredictable future challenges and changing environments. Societies that see a large proportion of their deviant members as 'stupid and less useful' or 'biologically disposable' probably aren't long for this world.
That African American stock broker's descendants might be grateful for a bit of sickle cell anemia malaria resistance in a post-global warming North America.
In fact its starting to look a bit like intelligence wasn't such a good evolutionary strategy after all. Maybe we should have stuck with big teeth and claws instead. Or perhaps we should put our best minds onto engineering the human race into something with better survival prospects. More like cockroaches maybe.
This must be one of our most commented posts, thanks in part to our recent link on Furious Seasons with the consequent increase in new posters.
This is a good discussion going on here about meds, side effects, efficacy, risks, benefits, and the softer side of promoting/demoting specific medications. Michael is right some folks talking up the teen suicide data with only correlational evidence to suggest that a decrease in antidepressant prescribing is contributing to the increase in teen suicides. But I don't think we will get anything other than correlations in this area.
I don't really get the vehemence which some folks (present company excluded) express regarding doctors who don't tell them the risks. I would like to think that a majority go over the biggies (eg, hypothyroidism, renal impairment, and weight gain for lithium), but no one goes over every single risk documented in the package insert. As the above discussion shows, weight gain may be important for some and not so important for others, depending on the potential benefits gained. This balance is so idiosyncratic and specific from one person to another, that it is really the responsibility of the person ingesting the drug to learn about it, ask questions about it, and learn where the uncertainties lie (eg, suicidality and SSRIs), so that they decide for themselves if they are willing to take the risks (known and not-so-known) in exchange for the possibility of the benefits.
I really appreciate all the links to good sources in Michael's comments... I agree with jcat's comments about all the additional reading... hard to find the time.
As for the evolutionary side of the discussion, we addressed some of this in podcast #12, about depression as a survival tactic which was preserved via evolutionary pressure.
The long-term sequelae of the failure of intellectuals to succeed evolutionarily was illustrated in the under-recognized but excellent movie, Idiocracy.
Roy, I would agree with you that the majority of the responsibility for searching out the side effects of a medication fall with the patient. I don't hear anyone arguing that docs should go over every minute side effect of a med. I'm not arguing about the 0.01% chance a drug causes the sniffles. I'm talking about docs covering the commonly known, serious side effects - such as antipsychotics causing weight gain. I think it's a no brainer to realize many people would be concerned about that issue. It just makes sense for a psychiatrist to be the one to bring up those issues - they're the professionals and the ones who have the knowledge. I am glad to hear that a lot of them do address it. They should.
Roy - I agree with you, but still have one concern. After I had my anticholinergic crises (2 of them), we knew I had a sensitivity to these types of drugs. I went to a neuro appt - he was the one involved in both reactions - and he prescribed doxepin for me. I took it - twice...made me sleep a lot. I then went to a psychiatry appt and told him what I was prescribed, and he said, "You know that drug has very strong anticholinergic properties, right?" AHHHHHHHH!!! I cried so much that day....
I do research all the meds I take - but some things are hard to find out. And to an extent, I actually trust what my doctors tell me. Before I was a nurse, I would still look up my meds, but the typical patient info for those who don't readily use the internet really hardly says anything at all! I was kinda young to really be researching and understanding the important things I needed to know about drugs. You've gotta admit - the patient info printed out by the pharmacy is rather weak. The lists of interactions are sometimes not accurate for all people, and it really hardly ever says any off-label use of the drug. I remember picking up all my headache meds and they'd say, "Use for hypertension, use for seizure, use for psychosis, and so on..." Very little "use for headache" haha
This is why I blamed my memory and concentration problems - my crash and burn semester at PSU - on me and performance anxiety - I didn't know topamax could do that to me. At the time, that side effect was believed to be rare.
This is all a lot of rambling, but what I ultimately want to say is that patients can't ask about what they don't know. If they're new to these things or even have no idea of what things they should or eventually will be worried about, they can't possibly know what to ask about. I didn't even know steroids caused osteoporosis until I had AVN - and that's kinda a big one - the rheumy who dx'd my AVN was surprised nobody had ordered a DEXA scan for me with how much I'd taken the steroids. I couldn't ask about what I didn't know or understand....
I agree that patients should be responsible for their health care and for knowing about their conditions and medications - to a point!
Take care,
Carrie :)
Where are Dinah and Clink anyhow????
Dinah's in Florida on Spring Break.
(yeah, I know it's still winter, tell that to the school that has deemed this "spring break").
Clink is at Dinah's house watching Max.
Yep, Roy, I found this blog via Furious Seasons, which in turn I only discovered recently after Philip Dawdy was a guest on my favourite radio program All in the Mind.
At the risk of using your blog to do a plug - All in the Mind podcasts are usually worth a listen. The topics are almost always intriguing and the host, Natasha Mitchell, is easily the best media science communicator in Australia.
It was this All in the Mind program that introduced me to the 'attention seeking' evolutionary psychology theory of depression and started me on a long range debate with one of its proponents, Paul Watson. That debate - along with the Dunedin Longitudinal Study findings about the MAO-A gene - is what has informed my own opinion on the issue, which stands in contrast to that promoted by Watson and J. Anderson Thomson Jr.
While I think I can agree - up to a point - that depression is internalised oppression and is likely to develop in response to social stresses, the notion that the paralysing or self-destructive aspects of depression are an efficient, pro-survival way of gaining sympathy and attention is kinda preposterous when you think about it.
As Dawkins posits in 'The Selfish Gene, a lot of evolutionary adaptations are inexplicable when viewed from the point of the individual. But, particularly in social animals like people, otherwise self-threatening behaviour (e.g. rushing into a burning building to try to save the neighbours) can be explained as a way of promoting the survival of your genes. Not in you - but the copies in people like you (and the entire human race is genetically more than 99.5% like you - though obviously near relatives are even closer).
So it seems to me that depression as a way to reduce aggressive responses to social pressure makes a lot of sense if you don't want your hunter-gatherer tribe to go the way of the kids in 'Lord of the Flies'. Even killing yourself becomes a viable evolutionary strategy if the alternative is to start attacking your companions and putting the whole tribe at risk (as those with the MAO-A polymorphism are more likely to do in response to oppression).
It makes far less evolutionary sense to me that people would cripple themselves with despair, injure themselves with self-harm or even kill themselves as a way to get the sympathy of their peers and reduce social pressure. There's plenty of lower cost strategies for achieving that, particularly if you look at the way small children invoke those sorts of responses from adults (Neoteny is also a very common evolutionary mechanism - especially in humans - whereby juvenile traits are adapted for use by adults. So if it was just a matter of getting attention and sympathy I would expect to see some sort of neotenous adaptation).
" it is really the responsibility of the person ingesting the drug to learn about it "
I must admit that when I hear psychiatrists talk about patient responsibility, I reach for my Szasz.
With the arguable exception of pediatrics, psychiatry is the one medical profession that routinely forces treatment upon its patients against their will. Even when legal sanctions are not invoked, psychiatric patients are almost invariably in very poor positions to argue effectively against the treatment proposed by their p-doc. All too often, when a treatment is resisted its "bye-bye responsibility, hello anosognosia".
Note that I am not commenting about any particular psychiatrist, but rather the overall relationship between the profession, authority and patient autonomy.
It seems to me that prescribing psychiatrists do have a lot of responsibility for their decisions to prescribe (or even suggest) a med. That responsibility includes knowing (and understanding) the risk-benefit evidence for the med (and, BTW, the evidence for suicidality on SSRIs is now a bit stronger than mere correlation) and properly explaining those risks and benefits to the patient.
I would also suggest that when a drug rep comes around to the surgery to promote the latest off-label use of a potentially dangerous pill, p-docs have a responsibility to point him at the door and practice a bit of pedi-posterior propulsion.
Neoteny: great word. Thanks for the introduction.
Pt responsibility: Yeah, your point is well-taken. However, psychiatrists (with Medicine, in general) have been moving further away from the paternalistic role towards a more self-deterministic role (slowly, but surely), with help from the Szaszists and related movements. I see this as a positive movement (ie, more autonomous) but there are limits. For example, society and the legal system continue to thrust involuntary treatment roles on us, whether we want them or not.
Evolutionary depression: Nah, I think it makes evolutionary sense. I have seen many guys (perhaps more than women) who -- after his girlfriend decides to leave him -- gets depressed and attempts suicide, only to land in the ICU with the girlfriend by his side, apologizing and declaring to try to make things work. Another chance for his genes to replicate. And the depressed behavior of a defeated male in a tribe can surely be seen to provoke the maternal instincts of some female tribe member, resulting in closeness leading to another selfish gene having its way. Makes sense to me. So much so that I wonder if there are parallels in the animal kingdom.
Woops - I didn't realize I posted my comment under my new anonymous nickname for my new blog. I'm an idiot... So here's my comment - connected to the right name! I'm going to have to watch out for that! ;)
That's cool - at Penn State, spring break was always the first week in March - the earliest spring break out of any college. After spending my spring break in Florida the first few years, it was tooooooo cold to enjoy it! (I always go to my grandparents place in Sarasota and to visit my other family in Tampa...)
Of course now I go down at a time when after sitting outside for 15 minutes, I'm drenched in sweat and too hot to hardly stand being out on the beach! (June!! I plan to go this June, too!)
Hope they're having fun!
Carrie :)
Oops, just noticed I stuffed up this link to the Psychiatric Times article on the Dunedin Longitudinal Study findings in my earlier comment.
Hmm, Roy, still can't say I agree with you on evolution and depression.
After all, depression kills (at least that's what the pill doctors keep telling me) and on the face of it, the risk-benefit equation seems pretty poor when it comes to keeping your girlfriend. I'd guess that being bubbly, vivacious and outgoing is probably a better strategy for finding sexual partners than sitting in a darkened room slashing up. But it takes all kinds I guess ...
Seems to me that a lot of mental health professionals are complaining that depression sufferers don't seek attention often enough (either professional or from friends), so the attention seeker hypothesis is a bit lacking in behavioural support too.
It makes a lot more sense to me if you look at depression sufferers as part of a larger family, community or social organism. Then suicide starts to look a bit more like cell apoptosis than the pathological behaviour of a disturbed individual.
But I guess seeing mental illness as a rational response to an irrational environment fell out of favour at about the 1000th time RD Laing fell down drunk.
Glad to hear that there is a movement among US shrinks away from authoritarian psychiatry. But I think the counter movement towards authoritarian psychiatric intervention needs to be acknowledged too.
Here in Aus, forensic psychiatry is leading the charge towards reinstitutionalisation and more use of community treatment orders. I know a few forensic psychiatrists and psychologists who are resisting the tide, but most of them spend a lot of time overplaying the alleged dangerousness of the mentally ill and massively overstating their own ability to assess and treat it.
The promotion of actuarial risk assessment tools like HCR-20 to determine whether someone should be scheduled or refused parole is particularly pernicious in that regard. I think if more people were mathematically literate, forensic psychiatrists would have to visit the proctologist to retrieve their checklists.
Just out of idle curiosity, do you really believe that major depression isn't a potentially fatal disease? Or that schizophrenia doesn't cause neurodegeneration in some people?
"Just out of idle curiosity, do you really believe that major depression isn't a potentially fatal disease?"
I guess I have problems with the usage of the term 'depression'. And an even bigger problem with calling it a 'disease', but let's not go there right now.
Intense sadness and hopelessness is certainly a risk factor for suicide attempts - and suicide attempts sure can be fatal. In fact I'd even go so far as to say that I think sadness and hopelessness can be a proximate cause of suicide attempts - though obviously other factors, both social and individual, play a part too.
But if we're talking the sort of amotivation, listlessness and fatigue that 'antidepressants' seem to be able to address the answer is 'probably not'. In fact I'm inclined to the view that they're probably protective against suicide (the symptoms, not the pills).
But really my comment was aimed at the way that antidepressants are always promoted by invoking worst outcome bogeyman. As if the ADs can be shown to reduce the likelihood of such outcomes.
"Or that schizophrenia doesn't cause neurodegeneration in some people?"
I'm yet to see any convincing evidence whatsoever for that - though I am satisfied that the 'kindling theory' of epilepsy it is based on has a strong evidential base.
The lifelong development of untreated schizophrenia is not consistent with it being a degenerative disease. It tends to come on during adolescence, but go into spontaneous remission with increased frequency from the mid-20s onwards - often recurring much later when other causes of neurodegeneration are likely to be making their presence felt.
Treated schizophrenia is a different matter of course. Neuroleptics can do truly horrible things to your dopamine pathways (e.g. the nigrostriatal). Tardive dyskinesia anyone?
If the atypicals have fewer extra-pyramidal effects than the older ones, they almost certainly come with an increased risk of stroke and microstrokes - hence more neurodegeneration.
On the whole evolution and attention theory - I've known a handful of people who have attempted suicide due to a breakup and in some cases, the person who had broken up with them came back, and in some cases no. In only one case was that person actually suffering from depression. In the other cases, the person had no longstanding or even short-standing history of depression, but was very upset over the breakup and thought this a nice, manipulative way to keep their significant other - as long as they didn't die in the end. Now, sometimes mistakes happen - a person isn't discovered as quickly as they'd thought, they took a little more of the medication than they thought would just "cause a little distress", and so on. And whilst I know this is anecdotal, in the cases I've seen here - the underlying motive is attention - not depression or escape from pain.
So are those people seeking attention? Yah...
How about your average depressive? I truly believe that the ones who attempt suicide and have clinical depression - especially the chronically clinically depressed - are not trying to get attention at all, but rather trying to escape their personal hell. If they don't succeed in their attempt, they may end up in the ICU and the units - but not because they wanted all that extra attention. In fact, I have run into patients over the course of my training (and I'm sure you all have seen a lot more) that were so devastated to be alive - and had repeated attempts doing worse and worse things to themselves - seriously trying to end their life - not get attention.
I think the difference lies in the motive and clearly distinguishing between suicidal gesture and suicidal attempt. Someone with depression might make a suicidal gesture if they feel nobody is helping them or paying attention to them. And if they don't receive attention, then perhaps they are more likely to make an attempt. Some people with depression never ever make a gesture. And when they feel they can't take it anymore, they make an attempt which they hope ends in their death. They don't want attention. They want to take the fast-track outta this world.
So I don't think one can say that depression is around simply to serve the evolutionary purpose of procreation by means of attempting suicide and self-harming which leads to maternalistic and guilt-ridden attention from those around them. Not saying this is what you are implying or stating, but rather just putting in my 2 cents on the concept.
One further thing that would necessitate examination is the gender role here. I would suspect that men are more likely to receive maternalistic attention for these acts. Women? Many of them are just regarded as "damaged goods" or people with "too much drama for me" and so on... And this becomes even more interesting to explore if you look at homosexual relationships and the differences between what "role" (if any) each person plays in the relationship at any given moment.
Carrie :)
If it is the responsibility of the person ingesting the drug to learn abotu it, from where should they learn? The internet is full of information but doctors often warn patients not to believe everything they read on the net because it doesn't necessarily come from a reliable source. I don't think most patients have access to all the journal articles that are subscription based or available only if you hold a libary card for a major University with a medical faculty.
Being a doctor and going through side effects with patients helps patients take more resposibility in making their own choices. Doctors who are too busy to do so and use the excuse that they are empowering their patients by handing over responsibilty for finding out about prescriptions are simply offloading.
Maybe it's because I'm not American, but I still believe it's primarily the consumer's responsibility to learn as much as possible about whatever you put in your body, medicinal or otherwise.
(Unless your illness disables you to an extent that you cannot read or make an informed decision, in which case someone in your family (or a patient advocate) should be doing it with you.)
Start with reading the patient information sheets that are included with your drugs - if there isn't one in the box, or the drugs are repacked for you, ask the pharmacist for it - technically, it should always be included. Even though they are written by the manufacturer, they generally have all the bad stuff included, albeit without numbers.
If your doctor tells you not to believe everything you read on the net, ask him for his suggestions on reliable sites. There are a few such as drugs.com that are generally accepted as fairly informative and unbiased. They have sections for consumers, advanced consumers, and sometimes, prescribers, each of which uses bigger words and gets more specific about side-effects.
Subscribe to free online journals such as Medscape and Psychiatric Times. They often have very informative articles, and links to other good sites. Yes, they are aimed at medical professionals, but they do cater for non-MDs as well. Ok, with a bit of a massage in the info you provide....I am a rehab professional, just not the kind that they actually mean :-))
Look at user sites without a bias, such as crazymeds.org - he doesn't cover everything, but he does put an awful lot of effort into reliable patient views, and also, a lot of good links to wider studies on particular drugs.
Change doctors if you feel yours is really too busy to respond to any concerns you have, once you have taken the time to actually read about the drugs you are going to take and think about what you've read. There are very few docs who won't spend extra time once they realise that you are doing your best to educate yourself as to what the meds might do to you.
My p-doc works huge hours, but will always respond to a meds-question from me because he knows I'm not expecting him to do my thinking for me.
And ultimately it's me who will deal with the side-effects, so it needs to be me who learns enough to make the right choices.
For this weekend at least, I'm still willing to take on fat, diabetes, prolonged QT intervals and any other of the byproducts of being happy. Well, if only we could get to the being happy bit.
I do have an aversion to getting side effects when I'm not getting the intended f**king effect! S/E of a combo of lithium, risperdal, tertroxin, zolpidem, trimipramine and nardil which is as yet not doing the depression kicking it's supposed to....is to make me into a frustrated and nasty git
I am not an American either. I know how to spell colour, favour and neighbour. I do happen to know rather a lot about the drugs I take, as well as the ones I choose not to take. I bring articles for my doctor to read, and often it is something they have not come across or had a chance to read yet. My doctor is just fine thanks. You are obviously pretty well versed on your facts ,as well. Most people are not. They are not reading blogs or Medscape and often, they don't even know that they can ask questions. People tend to blindly go along with whatever an authority figure tells them or suggests. After all, they didn't go to med school for 100 years. They figure their doctor will tell them what they need to know and doctors should be telling them what they need to know.The real problem is more likely that even the docs don't know. In such a case, it makes great sense to say here you go figure it out for yourself. If the drug companies really came clean about their products the doctors would be prescribing a whole lot less.
I kinda agree with "still sitting in the other chair..." There are so many things written out there, including at least several occasions on medical blogs, where doctors have said how much they can't stand patients who come in over-informed. They don't like that patients read the internet and bring in printouts to ask about with their doctor. And we're not talking off-the-wall bad information - we're talking legit stuff. I suspect it's because they are pressured for time and simply don't want to deal with it, but I don't know for sure.
I know my neurologist is quoted on the 'net as wanting a patient who is a treatment partner, not a dishrag. HOWEVER, when I first started seeing him (because my neuro moved out of the country), any time I asked a question about something, he took it personally and responded very sharply - including suggesting that I seek treatment elsewhere on a couple of occasions. Now that we've been working together for a long time, and I'm also a member of a professional society within neurology, he seems to respond to my questions a bit better. But I also know there's just some things I should avoid discussing with him. It's almost like learning the hard way that politics and religion are bad topics amongst friends, except with personal medical information! Ha! The last time he started me on a med that caused a very serious, adverse reaction for me in the past, I laid out my own stipulations for taking it, including that I would stop taking it immediately if I saw any of the same signs as before, that I would see a nurse practitioner in a week to determine if this was going okay (since last time, I wasn't aware of what was happening to me until I woke up from it...), and that we would increase on the dose very slowly. He agreed to all that - I was almost surprised, but I think he knows that the last time around, I made every effort to educate myself and also to contact him (3 times in fact) when things headed south, and he did nothing.
I did ask him what the main side effects he sees with the drug are. And I think that's an excellent question for anyone taking a new medication. Now, the first time around when I had the very severe reaction, I was only the 2nd person ever tried on this drug at their center... This time around, however, lots of people have taken it. All too often, the side effect profile doesn't correlate with what we see in real life. For example, I got a C+ in neuropsych pharmacology in nursing school, which happens to be my best subject. When they asked me the most common side effects of drugs like lithium and topamax, I answered with what I knew from experience (not just my personal experience...but from working in a field where they use these drugs daily), and I bombed the exam because the answer they were really looking for is not the most common side effect in reality - but it is by the books. So when I asked my doc what the main side effects he sees in patients similar to me taking this drug, he gives me a short list of 3 or 4 things. Then the nurse practitioner a week later additionally told me what things to look out for. This was extremely helpful. I couldn't narrow down the most important things from the jumble of jargon in the drug info - first off, the drug info from the company is written for PhD's to understand in many cases. It's not that I don't understand it - it's just that it's a whole lot of science jargon that most people have a hard time understanding. And also, it's hard to differentiate their list of effects with the regular ones seen in practice. So if the doc highlights the main ones seen, it's helpful. Also, neuro patients taking a drug are different than psych or cardiac patients taking a drug. Sometimes people with different conditions have a different set of effects and side effects.
Neuro patients and psych patients tend to experience side effects more quickly and at lower doses - at least from what I know about neurology and what my psychiatrist has said about psychiatry in the past. So it's always better to go extremely slow and start small. They didn't used to do this for me in neurology because they wanted to hit my headaches with a gigantic hammer - so instead, I'd have every side effect on the list and have to come off the med after a few days. The med then went on my failed drugs list - but it might have helped if we'd done it a little more reasonably!
I dunno....patient education is very important. If the doctor doesn't have time to do it even on some basic level, then they should have a nurse educator - like how they have diabetes nurse educators and so on. A lot of people don't even know how to read. Most people don't think this is a reality, but it's true - I've seen it dozens of times - patients don't just admit they don't know how to read. And most people don't ask them. In the inner city, many people don't have computers or text books. You will find people who can't read or who don't have a computer or the know-how to educate themselves in all places, to tell the truth. Can't just assume that it's one specific type of person or population. Sometimes the entire family will be educated, but one child can't read or whatever.
I truly feel that as a health care provider, one of my biggest roles is to constantly educate and inform my patients. If they want information to read, sometimes I search for it myself and print it out for them. Otherwise, I answer their questions doing whatever it takes - even if it means drawing diagrams or making lots of comparisons to things they do understand. We have to get through somehow - and it's an art trying to figure out how.
Carrie :)
If doctors (or nurses or nurse practitioners, PAs and so on) are only going to give partial or no drug information, then they should tell that to the patient. They should not assume that the patient knows that and knows that the doc only gave them the very briefest of info on this med. They should come right out and say, "I'm really only giving you a brief overview of this med, but I would suggest you ask the pharmacist for a printout of information if you want more details." or something like that. I know that's not comfortable and probably would leave some people feeling uneasy.
But I really feel this education bit is important. You just cannot assume anything.
The biggest thing I walk away from the appt not knnowing is what time of day to take my medication. And I can't even find that sort of thing in the drug guides and so on. It's not there regarding blood pressure meds or drugs like prozac. I had no idea what time of day to take prozac when I was on it for headache. In fact, I still don't know what time of day to take it. And if you try to find that info, it's tough! At least - it was back when I was searching for it! Maybe there should be some sort of guideline regarding at least the basic info that all patients should be provided with.....
Carrie I think that's a terrific idea---what about law requiring a basic uniform patient information label on all meds, like our nutrition labels? Something that would list the top four or five side effects afflicting a certain percentage of everybody who takes it, and basic dispensing info (in English).
Then maybe we could start tackling those darn clothing size labels.
Clink - definitely! Maybe I'll make a post on this... :) It's something I feel strongly about!
As far as those clothing labels - that's a total pain, too! When I was in England, Helen and I kept trying to figure out what each other's shoe size was in our respective shoe "language". lol
Did you see that special recently...can't actually remember if it was on the Today show or national news or something...about how sizes in the US alone have changed? Like if somebody wore a 12 before, now they wear a 10. And people who wore 2's now wear 0's and people who wore 0's are now needing a 00 size...which is insane! But they have to make xxsmall - all because they want to make women feel like they are a size smaller. I wish they'd just keep it standard and leave it at that! I can't order clothes online - and I HATE going shopping in a mall around all those people - I'd be much happier shopping online! Even in the stores where I always shop, I wear a few different sizes depending on the make... Insanity! lol
Take care!
Carrie :)
Don't get me wrong... docs should indeed be teaching folks about the meds they use. But folks need to ask questions, not just passively receive info. I actually like it when new pts come armed with info and questions and printouts from the internet. Some docs don't, but I think that's the wrong attitude. I don't tell every pt I put on Depakote that their hair could fall out. What's that, 1 in 500? "Take two package inserts and call me with any questions." Diabetes, yes. Hepatitis, yes. Agranulocytosis, yes. But, you've gotta draw the line somewhere. I've had pts come in with many of the listed adverse reactions highlighted, ready for questions. I explain what I know and schedule more time if needed. I find resources and print them out. If your doc won't spend time explaining stuff like this to you, then it's time for a new doc. 'Nuff said. If I ever have a private practice again, I will have an internet-connected Mac in the waiting room, with a printer and a stapler. The internet is the new stethoscope... an indispensable tool to help people become healthier.
Oh, I've got a podcast in the queue... we skipped last week due to I had no time. I'll try to get it out in the next day or two. In the meantime, I'll probably keep rambling about other oddball things that I can't shake out of my head.
Hey.... I lost my hair on depakote!! haha I remember one woman from the old AOL DIFChat (remember our connection here? *wink*) who talked about losing a lot of hair on depakote. I think when I eventually had to take depakote for headache, this actually made me less freaked out about losing my hair. It wasn't like I was going bald - I have extremely thick, coarse hair - but it was coming out in handfulls.... Nobody could tell except for me and whenever my roommate at the time would see me brushing my hair and my brush would have huge chunks of it. The side effects I had on depakote were: extreme acid reflux (started on my first reflux med - even though I'd had reflux from birth), somnolence - to the point of sleeping through 4 alarm clocks and my mom calling from 3 hours away to wake me up in time for class..., general puffyness - water weight gain I guess; pale, pasty peeling off skin - my lips were even peeling - on that med, I basically looked reallllllly sick...and not headache sick....but like, chemo sick. It's too bad - depakote actually helped my headaches, too!
Roy - I'm not trying to be obnoxious with my talk about education for patients - but I still have more thoughts on this. What do you do if you have a new patient who hasn't really had any medical problems before? Well - I guess not so much you as you work in a more acute environment - but say you have an outpatient, and you're just doing a medication consultation so it's not like extensive therapy - and this is the patient's first appt but they don't even know what to ask? When you say "SSRI", they're like, "SSR WHAT? What is that?" What do you do for the people who have no idea what questions they even should be asking? It's not that people don't ask questions - but they don't even know what to ask - someone new to medical issues might not think to ask about what side effects they may experience - or what risks they should be concerned about. As it is, they're too busy trying to process their situation and handle new information coming at them in the appt. Sometimes people are in shock in certain settings.... Lots of people need time to process - I'm actually one of those people. Usually in my appts, I ask the questions I have written on my papers, but if I get a lot of new meds or new information, sometimes I dont' think of any questions until I'm halfway home because I'm too busy just processing the information being told to me.
I think that general education has a lot to do with this, too. If you have a patient who has attended college - they're probably going to be a bit more apt to want to research their own problems. But if you have someone who grew up in an unstable household, low income, and dropped out of school back in 5th grade to work the streets for drug money.....how much of a self-advocate do you think this patient can be?
I guess I've just always been of the mindset that I have to assume nothing - if my patient already knows what I'm telling them, then I'll stop. I often say that I don't want to overexplain things or make them feel dumb by repeating something they've heard 1000 times - but just in case they haven't been told it, I still go through my spiel unless they say they already know this stuff. I love that people ask questions - but even working in the neonatal setting - sooo many times, I've seen parents just sort of come in and ask very little unless I sort of speak with them quite a lot and get them to open up. I think stress and fear sometimes makes people afraid to even ask anything.
OK I'll stop now! G'nite!
Carrie :)
I can see quite a few probs with the notion of listing 'the top four or five side effects afflicting a certain percentage of everybody who takes it ... (in English)'.
First is working out what the 'top four' are. Is a potentially catastrophic but relatively rare side-effect (say, 2% chance of agranulacytosis) more 'top' than a less serious but more common one (say, 70% chance of sexual dysfunction)? And is sexual dysfunction as serious in an elderly dementia patient as it is in a stressed out university student?
Second is the way that a lot of the new polypharma pills, with more potential side effects, would look no more dangerous than a single active pill if they happened to share the same top four.
More important is that for a lot of the pills doctors hand out these days, no-one yet knows the medium to long term side effect. The medical world has only recently started to learn about some of the spectacular (and potentially deadly) somnambulism associated with zolpidem (although patients have been warning about it for well over a year). And look at how long the drug companies were able to suppress evidence of the suicidality associated with SSRIs or the glucose metabolism damage done by atypicals. Stand by for the bad news on ADHD amphetamines - after we have already been dispensing them to thousands of kids for years.
And even more importantly there's the issue of English literacy. I'm a big fan of Darwinism, but I draw the line at pharma-eugenics directed against the illiterate and non-English speakers.
I really think there is no way around a the need for a lot more responsibility on the part of the well trained, well paid medical professionals who Rx this stuff. Otherwise we might as well get rid of them and just flog the pills from supermarkets along with instruction manuals for their use.
A start would be sort of an inverted TMAP, where older medications with better understood risk-benefit were tried before prescribing the latest 'wonder drug' out of big pharma's box of tricks.
I think doctors would also be practicing better medicine if they assumed that people walking into their surgery (even prisoners and depression sufferers) were not there to try to manipulate them - unless they had been paid and trained by drug companies to do precisely that.
Another idea would be a levy on the marketing budgets of drug companies that could fund independent consumer educator/advocates who would be available to help patients to understand the risks and benefits of therapies and how to recognise the signs of each. Of course measures to prevent them from being captured by drug companies would have to be put into place too.
And above all disclosures. Preferably prominent and preferably in the surgery. Or, as Rich Winkel asks - Who is the doctor working for?
Oops, blew another link.
My earlier comment referring to consumer warnings about zolpidem should have linked to the Erowid Experience Vaults entry on zolpidem, with its accounts of bizarre somnambulism going back at least as far as August 2006 and another account suggestive of such side-effects at even low doses posted a year earlier.
Of course a lot of the Erowid accounts are from people abusing rather than using meds. But if you think of them as test pilots ...
Carrie and Michael summed it all up very well. As for getting defensive about the fact that doctors are authority figures and are often viewed as god like, you didn't miss that class in med school, Clinkshrink. Operative words are "viewed as". Shrinks are more likely to be viewed as authority figures in a negative sense, given their powers to hopsitalize their patients involuntarily. Even though it might be necessary at times, you can see how there is a huge power imbalance.
I take 1200mg of Seroquel at night, along with 4mg of Ativan and 50mg of Zoloft. I know, 1200mg of Seroquel sounds crazy, but it's true.
I'm baffled myself that I can handle that high of a dose, especially since 25mg of Seroquel prescribed early in my illness knocked me out completely and increased my appetite immensely.
Perhaps it's the med combination that I'm on, or the fact that I recently began Right Unilateral ECT treatments. I don't know, but whatever the reason is, I don't care as long as it helps me cope better with my illness.
I hope this post is appropriate enough to submit to the comment section of Shrink Rap concerning Seroquel. If not, I'm sorry.
All the best
can seroquel cause tarterdiskeneisia?
syanita4@yahoo.com
My friend has been taking Clonazepam (Klonopil, Revotril) for a number of years and she is very happy with it. She lived in Montreal where any MD could and would prescribe it for her. She was able to get 6 months worth of prescriptions from her regular doctor.
Since moving to NYC she has been treated like a criminal, forced to see a psychiatrist in order to get a prescription, and her psychiatrist INSISTS on her stopping Clonozepam through a gradual reduction while starting on new meds such as Abilify or Geodon.
She has NEVER had ANY side effects from Clonozepam, and she had tried many drugs in Canada before finding the one that works for her.
Her original scrip (in Montreal) was for 6mg/daily, but she feels (after we tried a gradual reduction on our own of 1/2 mg less every five days until we reached 1.5 mgs daily) that 4 mg daily -- 2 in the AM and 2 before bed -- would be just fine.
One doctor in an emergency room told us that Clonazepam is considered a drug with a high risk of abuse here in NYC and that is why Drs. are reluctant to prescribe it. Are there any doctors that take their patients well-being into consideration or are they all cowed by the Feds?
I would appreciate whatever light you could shed on this problem. I am sure my friend is not the only one experiencing this problem here in NYC.
Thanks ; )
FOR THOSE PATIENTS ON SEROQUEL, BEWARE. THE DRUG INCREASES YOUR APETITE AND DOES CAUSE WEIGHT GAIN SETTING YOU UP FOR INCREASED RISK OF DIABETES. THERE ARE OVER 10,000PEOPLE IN A CLASS ACTION LAW SUIT AGAINST THE DRUG. TAKE IT AT YOUR OWN RISK!!!
Thanks for telling us about the diabetes Annie. What about dreaming you have rats in your bed or that someone is loudly sleeping next to you! This drug is harmful and I don't like it!!!! I agree, there seem to be more risks than benefits!!!
My name is Kim Collar and i would like to show you my personal experience with Seroquel.
I am 40 years old. Have been on Seroquel for 9 months now. I would love to know how people sleep after having huge insomnia before seroquel as it is the most potent sleep inducer known to mankind.
I have experienced some of these side effects-
lack of motivation, extreme depression, headaches, hypotension, increased pulse, dizziness, weight gain, dry mouth, constipation, personality change, puffy gums, no interest in activities other than sleeping.
I hope this information will be useful to others,
Kim Collar
I am diagonosed bipolar and wish I had NEVER been prescribed Seroquel. Despite what the author says, I have found, and many others have found, that this drug has irretrievable loss in two major areas of my life:
1. I have gained 50 pounds of weight. It is devastating at my age to gain so much weight. I went from a size 2 to a size 20. This can happen on the smallest doses of this drug.
2. Once you get used to sleeping with Seroquel, you can't sleep without it! It is a great sleep-aid; so great that you will lose the ability to learn how to fall asleep naturally.
I am thus "hooked" on this drug, even though physically it is not addicting; it nonetheless should be considered addicting in some form as it is very hard to get off of. Once you are addicted to it, and you have weight problems, and now there is TYPE TWO DIABETES to worry about.
Really, at this point I would sue anyone who would suggest this drug for me or any of my family.
Is there a way to correspond with you Dr Dinah? Reading your posts, especially this one, greatly gives me hope about psychiatric care and psychological well being.
I was taking Seroquel 50mg at night for sleep. It worked very well as a sleep aid but I got Parkinson-like symptoms then narcoleptic malignant syndrome from the drug. After my experiences I would be very wary of taking any atypical anti-psychotic.
Taking for 2 years. Only side effect is dry mouth but this can be handled as long as you TAKE it with a full glass of water. I now sleep. Being bipolar I was up 4 days at a time. Seroquel gave me my life back. I hope it continues to work for me. Gained maybe few pounds. That's it.
I understand everything what you guys are saying, but the truth is I didn't know what to do when I was on seroquel, I mean I know that not everyone can understand what can happen to a person but I think its genetic, but mostly I think people need to realize that emotions kick in when taing the medication, maybe i didnt do well on it.
i planned my death and began to follow through, but after i slit my wrists i passed out before i could finish myself off.. i dreamed very vividly of myself walking through my home and talking to my doctor in my living room, in my dream he reccommended taking a lot of seroquel and thinking about my choices.. when i woke up and scraped most of the dry blood off of my hands that was the first thing i did. i was prescribed seroquel 25mgs... i took roughly 250mgs of seroquel and became very sedated and no longer felt suicidal, i had a complete appifiny and my dream doctor was right but i no longer have seroquel and im worried about how il fair if a scenario like this happens again
I enjoyed reading this post. I discontinued Seroquel a few weeks ago, after taking it for Bipolar 1 for several years. I am now taking Lamictal and Trileptal only and am doing well. I was diagnosed when I was 19 and now I'm 44. I have taken a lot of medications with bad side effects and I have had psychiatrists tell me that they wouldn't treat me anymore if I refused to take particular medications. I'm glad you don't do that. I gained 150 pounds over 25 years of taking many medications including lithium and Seroquel. Lithium and Seroquel were the ones that caused me to gain so much wait over time. Depakote was bad too, but I didn't take it for long. I have been diagnosed with high blood pressure and sleep apnea. Since discontinuing lithium and Seroquel, I have lost 60 pounds and want to lose 90 more. I have been very active in therapy and in my support group. Sometimes I think my psychiatrist doesn't recognize the progress I have made and is of the opinion that I will always have to take strong medications, but I am doing well on just Trileptal and Lamictal. It has been so hard to negotiate with psychiatrists over the years. I was immature when I was diagnosed, but now I know I have learned and grown a lot and I don't think I need to be in chemical restraints that can have deadly side effects.
Ooh man.. This article reminds me of an instance where my pharmacist said to me, "Doctors arent as educated as you would like to believe."
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