My experience has been that when psychiatrists prescribe a new drug to deal with the mood swings, they don’t provide quite as much information as they should.
In the early days just after my diagnosis, this was a problem since the implicit message from the doctors was “If you take this antidepressant, then you’ll stop being depressed.” But that’s simply not true. The drugs are not a magic answer.
There are things to look out for
The drugs don’t necessarily help
To be fair, none of the psychiatrists ever promised that any drug would work. But there is a vast difference between your psychiatrist saying “Let’s try Seroquel to see if will work to stabilise your moods” and “Seroquel helps about 60% of the people who have depression and doesn’t help about 40% of the people.”
What happens if you are one of the 40% of people who Seroquel doesn’t help? How will you know? What do you do next?
It’s good to know what the side effects are
Then there is the problem of the side effects of the drugs.
Sometimes coping with the side effects on my own doesn’t matter too much, such as when I get a medicinal taste in my mouth.
Sometimes the side effect is relatively mild but advance notice would be handy, such as when the drug makes me more prone to sunburn or when alcohol can cause nausea, or the drugs causes blurry vision.
There are also side effects which I really wish the psychiatrist had given clear warning about, and spent time with me to plan how the 1-2 weeks might be organised. The story above is one example where I should have been better warned about what might happen.
This is not academic. Side effects which dramatically alter day to day life can wreak havoc because of missed meetings, tasks not done, and missed or embarrassing social events, and burden me with additional problems at a time when I really don’t need additional problems.
Sleepiness, grogginess, and the having an antidepressant trigger a manic episode are examples of these kinds of side effects.
There’s also that thing where if the side effect is scary enough, I will stop taking the medication immediately. And while I might mentally curse out my psychiatrist for not warning me as I try to deal with the mess created by the side effects, I might not actually call up my psychiatrist to say I’ve stopped taking my meds. Things can only get worse from here on.
The fractions used for Seroquel above were taken from the article – Calabrese JR, Keck PE Jr, Macfadden W, et al.. 2005. “A Randomized, Double-Blind, Placebo-Controlled Trial of Quetiapine in the Treatment of Bipolar I or II Depression.” The American Journal of Psychiatry. Ref: Am J Psychiatry. 2005;162:1351-1360.
Why ask your psychiatrist these questions?
You deserve to know how well a drug works and what the side effects can be for some simple reasons. These include:
You actually have a life outside of the doctor’s office. If there is a chance that the drug will not work, you need to be aware of it so that you can prepare a backup plan in case things don’t work
You can warn your family and friends that the drug may not work. That way, if it isn’t working properly and your life is going chaotic, you don’t have the added stress of dealing with the people around you going “You’re taking medication so you should be getting better. Why aren’t you? What are you doing wrong now?”
You can watch out for the side effects. You might know that the drugs have potentially harmful or annoying side effects, but my experience has been that you don’t really watch out for the side effects unless the psychiatrist really hammers the point across.
And you’d be surprised how clueless you can be. When I was taking Lamictal, I was warned by the psychiatrist about the potentially dangerous rash. And I had done my homework so I knew about it. And it still took me four days to connect the itching on my forearms to the idea that perhaps I may be reacting badly to the Lamictal. It really does help for the psychiatrist to hammer the point across.
You can plan for possible worse case situations. They don’t happen to everyone, but they do happen to some people. For example, my psychiatrist told me that Seroquel can be very sedative and I should take it at bedtime. Well, okay.
What he didn’t quite bother to tell me is that “very sedative” can be extreme in some people. So I took the first dose and slept pretty much for 30 hours straight. I think I was awake for about 15 minutes during that entire period. I missed work, scared the heck out my housekeeper and parents, and the dogs didn’t get fed that day.
If I had known, I could have warned my family that this might happen. And I could have made alternative arrangements to feed the dogs.
Half of me wants to blame psychiatrists for situations like this. But half of me also knows that that they have to make judgment calls between providing enough information and providing too much.
My recommendation. Take this judgment call out of their hands. Ask all the questions. Your psychiatrist will usually be happy that you are being responsible about your welfare.
What Questions to Ask?
What are the chances of the drug working? Actually the specific question to ask is “In the drug studies, what percentage of the people have been helped by the medication.”
The psychiatrist may not know the exact percentage of the top of their head. Ask them to look it up or Google it for you. In fact, insist that they do it while you wait.
My opinion is that if the psychiatrist doesn’t know what percentage of people will be helped by a medication, then recommending it to you is only slightly better than pushing snake oil.
Get the numbers. It’s your life, your moods, your problem. Your psychiatrist is supposed a resource for interpreting clinical studies on your behalf, not just be a nice guy/gal on the other side of the desk or coffee table.
Related to this question is the similar question “In the drug studies, what percentage of the people have been helped by the placebo.”
This doesn’t quite relate to anything above, but the numbers are usually found together in a published clinical study. It is however handy when evaluating Item 8 below.
How long will it take for the medication to work? Ask for a specific time frame. One week? Two weeks? Ten days? One month?
There are two reasons for asking this question. The first is that if it takes long for the drug to work (and for us two weeks or more is long), you will know that you have to keep plugging away at taking the medication.
The second is that if you have a time frame, you can tell it to your family and friends. That way, two days after you start on medication, they won’t be bugging you that you should be better now and why aren’t you dressing to go to work.
How long will I have to wait to know if it not working? This is related to Item 2. You can’t wait forever and hope the drug will work. The drug’s clinical studies will have shown a time frame by which the drug starts working, so there will be information about how long you need to wait for an effect.
You need this information because if you reach the “should have been working by now” date and you aren’t feeling any better, you need to tell your psych so you can either adjust the dosages or change the medication.
Can I become resistant to the drug. How will I know? For some people, when they start taking a drug, it works. However, a week to two weeks later on, it stops working because their body has become acclimatised to it.
It is unlikely that your psych will be able to answer this conclusively. But they may have experience with other patients who have taken the drug and may be able to give you a guess.
I think it is worth chatting with your psych about this and what might be the next step in your treatment.
What is the dosage of the drug I am being given? What is the minimum dosage and what is the maximum dosage?
If you aren’t being given the minimum dosage at first, ask why. Your psych should be able to give you a reason that is acceptable to you. And you do have some negotiating power here to increase or decrease the dosage.
You also want to know the maximium dosage because you don’t want to overdose accidentally. We forget to take our meds, but we also forget if we have already taken our meds. If aren’t sure if you have taken your meds and you are considering taking them to make sure, you’ll need to know that you aren’t exceeding the maximum dosage.
My experience is that high levels of psychoactive drugs are not fun to experience.
Ask the psych what will happen when you start taking the drug. Ask them to explain what you should expect in the first day, the next day or two after that, and then in a week or two.
Ask for details – “you’ll feel better” is a copout. You may or may not get a proper response, but my feeling is that the more willing the psych is to help you understand what will happen when you take a new drug, the more confidence you can have in them.
Psychiatrists who are prescribing without taking your concerns and fears into consideration are not good.
Ask your psychiatrist for a phone number you can call at any time if you are having problems with the drugs. This is important, particularly with drugs that have potentially harmful side effects. If something is going wrong, you want immediate access to your psychiatrist.
Ask what are the major side effects of the drug are. Yes, the major side effects usually happen to only a tiny fraction of the people, but you just might be one of that tiny fraction. You need to know.
For each major side effect, spend the time to delve into the details of what can go wrong and what to expect. Ask about the worse case scenarios, so you have an idea how wrong it can get – think about my Seroquel experience above – and so you can make your backup emergency plans.
I’d recommend that you ask specifically if they can affect liver or kidney function. Not all drugs have this effect but some do, and you might not have warned your psychiatrist about any liver / kidney problems that you already have.
In addition, treat weight gain as a major side effect and specifically ask your psych about it. Many of the drugs can make you put on weight – and it’s a real bastard to take the pounds off. You’ll be really pissed off with your psych that you weren’t warned about this.
If you are new to taking drugs, I’d also recommend that you discuss with your psych about the minor side effects of the drugs. These can include dry mouth and skin, occasional blurry vision, occasional nausea or lightheadedness, no desire for sex or impotence (which you may or may not count as a major side effect), and a whole host of other minor effects.
Some psychiatrists will be happy that you are asking all these questions. Some will try to brush the questions off as too much information to give to you. Don’t accept this. You deserve to know what is happening to you and you deserve to ask all the questions. If the doctor is not answering these questions, then they are experimenting on you.
Check the section on Drugs for my experiences with the drugs I’ve taken.
Check out the Crazy Meds website for information on specific drugs.