One of my readers left a message tonight and said he had never felt as bad as he did today since he had begun withdrawal–to the point that he wished he could numb his feelings. My response was to say he was lucky as I’ve had many nightmarish days brought about by my withdrawal so many times I’ve lost count.
I want to tell you all something clearly and explicitly though. I’ve made reference to doing this once before but I want people to know that I’m not some hard-core anti-drug person. I am, in general, anti-med, but nothing is black and white.
Because of the drug withdrawal I’m hypersensitive. I’ve had a number of occasions now when people I care about or trusted have hurt me. In general it’s been a professional care-provider, surprise, surprise. I’ve found they repeatedly abuse their power. Though I’ve also learned how to avoid it now I believe. And I do have some great professionals in my life as well. Consistent ones that have been around a long time. Once it’s been a friend. This is the only time I go into a total tailspin. The emotional agony is so great that I do not sleep and there has been about 3 times in the last 6 months perhaps that I’ve taken a extra bit of a neuroleptic (antipsychotic)—since I’ve been off all of them for “maintenance” purposes. The first time I did it was way back here when I tell the story of when I pop a Seroquel after being off it for a year and a half and it was nightmarish. This is actually before this 6 month time frame while I was still withdrawing from Risperdal—so this is an additional incident.
It was clear I never wanted to do that again. The Seroquel had turned deadly toxic and ugly on me. But Risperdal on the other hand in a very small dose has saved my butt a few times since then.
BUT! Since I’ve been off Risperdal which is probably about 6 months or so I’ve taken .5 mg about 3 times when I got scared that I would just fall apart. And I was hurting so bad I did want to be numb and frankly I think I was simply being compassionate with myself. Remember I was once on 11 mg of Risperdal. So .5 mg for one night is hardly much of a toxic load.
The last time I had a really bad emotional crisis I chose NOT to take the .5 mg Risperdal. I WAS up all night, but finally I slept for about 3 hours the next day and I did return to normal. (my normal, which is hardly typical) So perhaps I learned I don’t need to do that again.
In any case, this is a damn hard process and we need to be kind to ourselves and while I am withdrawing I will do what I need to do as I see fit. I am not healed from the damage these drugs have wrought. And sometimes when the suffering becomes so acute—always with a trigger—a very obvious one—I have chosen to “numb” myself with a tiny bit of Risperdal.
The thing is I am now TRULY AND COMPLETELY informed of the dangers. And I also know that I am TRULY AND COMPLETELY committed to get off the drugs.
That being said, it’s unclear to me when and if or ever drugs are appropriate.
I know that in some extreme instances they may become necessary for acute crisis management. But that is the only time I think they are necessary.
What an acute crisis is, though, is no one’s right to determine but the person who is going to swallow that pill.
And remember the time my incompetent psychiatrist cold-turkeyed me? That too was a crisis in which I needed to take extra meds. I got off all that extra crap in 12 days.
I’m pro-choice. Okay?
bplife,
you gave me no details when you left that message…I had no idea what you were going through…this was just what came out of me…
I am pretty much anti-drug for myself…and as I said the last time I was in great distress I went without the little dose of risperdal and learned that perhaps I can continue to do that….
i agree with you there is no pill for the horrible grief you are dealing with.
may the universe bless you and help you turn all the tragedy in your life into something that gives you strength and understanding.
peace to you.
if you liked what Will had to say I turned it into a post here:
http://bipolarblast.wordpress.com/2009/04/09/will-halls-thoughts-on-the-psychotropic-drug-use/
there is a great discussion after it.
P.S. I like what Will had to say.
Gianna – I’ve been meaning to respond to this but I haven’t felt like writing. I know that you are not anti-drug but can see why you need to reiterate this every now and then. People will read one post and believe it sums up your beliefs when in fact you may have only been having a bad day. I take responsibility for my decision to taper off meds but have always reserved the right to stay on or go back on them as necessary. I try not to think in black and white terms either.
That said, even if I wanted to take something to help me through this period there is nothing out there that will help me. There is no pill that will bring my father back. There is no chemical that will repair our relationship. There is no drug that will stop the depressions from coming. My only course of action is to deal with each cycle as best I can and try not to give into despair. This is beginning to sound mellow dramatic but I know that you understand. The good thing about not taking meds is that I am not numb to my life even though it is often times difficult. When the depression pulls me under it’s waves I try to remember that this is only a small part of my life experience.
Jeanne,
It’s interesting you bring up the psoriasis drug…I follow psoriasis news too as I’ve had it most of my life.
It’s the same exact phenomena…deadly drugs (and there are several used for psoriasis) to care for something that is uncomfortable and ugly. It’s not just families who don’t want to look at it…having lived with psoriasis I can tell you first hand it’s not nice to have people constantly pointing at your patches saying “ooohh, what’s that?”
I used topical steroids for many years until I found out they made the problem worse. I was lucky enough to know not to take the immune dampening drugs that can kill you.
And when you talk about symptom control being all it’s about, yup! you got it…
you know when I started treating my body as the holistic thing that it is—finding what nutrients I needed, healing my gut, finding food sensitivities and changing my diet…well the psoriasis is almost gone.
I did all that to deal with coming off the psych meds but holistic creatures that we are, my psoriasis went away too. Balancing our bodies through food, nutrition and exercise is likely to heal all sorts of “chronic” conditions.
I have been following the pharma biz because of Thomas Szasz’s question, i.e. Cui Bono, who benefits. Yesterday there was an announcement that some psoriasis drugs have been recalled because of a risk of brain infection and death. I think that if the families of eczema sufferers were sufficiently grossed out by skin eruptions there would be a push to keep these drugs on the market. In this case the FDA had the sense not to leave it to the dermatologically ill(or to their doctors, schools, families, or skin health courts) to choose between clear skin and death.
In the case of psoriasis, it is plain to see that the drug treats the symptoms and does not address the cause of the problem. A terrible confusion has crept into health care in that we believe that controlling the SYMPTOMS of madness is actually addressing the CAUSES. An analogy would be to have a cholera drug while doing nothing to clean up the sewers that are breeding the bacteria and then to blame those who die anyway for their susceptibility to cholera or intolerance for the drug.
So saying that, do I “believe” in the use of psych chemicals? I believe that people need to be able to control their own brains. I believe that in an atmosphere of informed consent we can be free to make these difficult & deeply personal decisions. And I am not going to tell anyone to stop doing whatever is helping them cope.
The genie is out of the bottle and I am not going to be able to turn back the tide of better living thru chemistry. My choice is to follow Gandhi’s advice and “be the change” and keep talking about the unintended consequences of chemical behavior control in my own life.
I think it is part of Harm Reduction philosophy — only you can know your life. It deeply honors the uniqueness of each person’s experience and validates the importance of discovering for yourself without anyone else giving you final authority over the right and wrong of your experience….
…The experiences of people taking meds are all over the map, from I’m Saved to They Ruined My Life.
Will,
there is so much I’d like to say about all the stuff you’re writing—and I’m not up to fine analysis these days..AT ALL because of cognitive problems, BECAUSE of the drugs…BUT, the above is so totally right on…
in one perspective “drugs ruined my life,” yes. In another, they gave me purpose. Who knew I would go on to have a voice to help others make different choices based on the fact that the drugs “ruined my life?” They’ve created my purpose at this moment. My life is hardly meaningless as a result of taking drugs.
Reframing our experience, reinterpreting the hard times…all sorts of things allow us to see we do not know what is for another and even for ourselves quite often.
Drugs have completely disabled me. I can barely get out of bed. I hate drugs.
I hope to keep people from drugs. This is the goal of this blog…but it’s only for those people who WISH to take that message from it….
that’s why everyone is free.
I am in graduate school studying psychology and a while back we had a class on the DSM and related topics. More than one student kept asking “When does someone need to be on meds?” “When should someone be medicated?” and “When is it necessary to medicate someone?”
I of course offered a lot of information and the students learned a lot, but something about the questions keeps bothering me. Not the lack of accurate information surrounding medications, but something more basic. This is somewhat hard to explain but I’ll give it a try:
It’s as if a certain way of thinking about the problem is behind the way the question is formulated. “Are medications necessary?” is for me not as meaningful a question as “Are medications useful? Are they helping you? How do you experience them? What options do you have? How did you come to the decision to take medications? How informed are you?”
In asking “When are medications necessary?” there is somewhere a God figure who Knows What’s Best. This figure has always been behind medical authority. It also never really exists.
You can never know if medications “are necessary” because you can never time travel into the past or future. It is not a meaningful way to frame the question, because you are asking to know the Truth about the past or future. Nothing is ever “necessary.” All you can say is “So and so said they were necessary” or “So and so believes they are necessary” or “they feel necessary to me.”
Think about any choice you make in your life, any choice. “I need to go to work.” “I need to take care of my children.” These are choices we make that people would support, and make sense, choices we make every day. But are these choices “necessary?” We feel they are, but we can never really know if they are from the God’s Truth, time travel point of view. Maybe a different choice would be better?
Say someone for example quits their job suddenly and plunges into poverty, completely overturns their stable life. Sounds like a disaster, but many people have in fact done this and come out much better off. Maybe they get a better job and a better life.
Same thing with taking care of your children. Some parents may hand over childcare to a grandparent or a spouse and it ends up being much better for them and the child. People do terrible things to children because they feel it’s “necessary.”
The reality is that we give doctors a power to “know what we need” when in fact, does anyone ever really “know what we need” in a final sense? All we have is our experience. “I took a Klonopin last night and today I was able to go to work because I got some sleep.” That feels sound, it feels useful to you, it feels positive. So you decide it was the right choice. Great, I totally support that. But the nature of being human is that we can never know if any choice was Right in an objective, final sense, because, unlike God, we can’t time travel and see the implications of taking different choices.
I can look at your Klonopin taking and see you are strung out during the day, not getting good sleep, and have anxiety that is probably a result of taking the Klonopin, realize that you are going to have a hard time getting off, and see that your physical health is declining from taking it. I can tell you all these things. If you say “I don’t believe you, I need my Klonopin,” can I really be so sure I have the answer when the person doesn’t? Maybe they are in denial and stuck for a reason — maybe they are protecting themselves from some demon of trauma, some memory, some family situation, and the time just isn’t right to deal with it, and if they did push and got off Klonopin they would end up in a crisis and worse off than when they were taking it. Can I time travel to alternate realities and know what’s best?
I realize this sounds like a radical point of view, but I don’t think you can get around it. You never really know for any choice for certain if it was “necessary.” No choice is “necessary,” we can agree it is necessary because it feels like the best thing, but we can’t ever know all those alternative realities or time travel to see what different options would lead to. All you know is you made the choice (or it was made for you) in specific circumstances, you try to do the best you can, and you look at the consequences and decide whether something is right for you. “Whatever works for you” is a mantra I’ve repeated over and over again in my work. “Should I take medications?” “Whatever works for you.”
This comes up around suicide, another place where doctors like to play God. People have told me, “Will, this group you started saved my life.” I appreciate the compliment and value the way the person feels helped, but I see this statement as predicting the future. What if they never found the group? Can they time travel and know that some other way of getting help would never be found? Maybe they find a better group, maybe they learn to help themselves after spending more time alone? Saying something or someone “saved me from suicide” is in a sense to predict the future or claim to know an alternate reality. Even someone who is talked back from a ledge or found and rushed to the hospital – all you can say is “almost certainly” or “extremely unlikely” that they would have survived. Maybe somebody else would have been there to help them. Maybe they have a freak physical reaction to the overdose they took. Maybe there is a miracle (they do happen). Life is fundamentally creative and unpredictable.
That goes for medications too. No one really knows. I am absolutely not saying that because you can’t predict the future, people shouldn’t know that drugs are toxic or addictive or they have specific results. They should know. Some consequences are so completely predictable that they might as well be certain. But very strange things are possible. Remember that science used to believe we don’t grow new brain cells, that the brain can’t heal. Now that is known to be false: the brain does grow new cells and the brain can heal. When a friend told me he had cancer a few years ago I supported the decision for surgery and was very worried for him. I also told him to take the information about likely outcomes and how much danger he is in very seriously, but to hold out the possibility that not even doctors know 100% what is going to happen.
This may sound like an abstract philosophical point of view, but it’s instead extremely practical. People want Answers. There are none. They want Certainty. There isn’t any. Doctors thrive on this need people seem to have to know their choices and life paths are Right and Necessary. We can never really know. All we know is that we have an experience. A choice feels right, it is useful, people around us seem to agree. So we go with it. But can we know the other choice wouldn’t have been better?
This gets into a direction I think it is very useful to explore: Doctors as priests and science as religious belief. What doctors and science deal in are very practical decisions and tools. Its not the same as religion. But there are very strong parallels in how we turn to them as Authorities and they step in to give us Answers based on some presumed power we seem to give them to travel in time and to know alternate realities resulting from different choices. That authority is comforting. We do need certainty. But like the decline of religion over the past 150 years or so, we need a decline in blind obedience to doctors and science, and we need to put more authority in ourselves.
I feel very strongly that I needed to get off neuroleptics and get out of the mental health system. When someone comes to me and says, Do I need to get off neuroleptics and get out of the system?, I don’t respond by saying Yes. All I can do is tell them my experience — and be open to theirs. Maybe their circumstance is such that, unlike me, the alternative options are worse than the ones I faced. Maybe things will go differently for them than they did for me. There is no way for anyone to predict the future.
If you read the Harm Reduction Guide to Coming Off Psychiatric Drugs that I wrote, you will see that this subjective perspective informs the approach throughout. I think it is part of Harm Reduction philosophy — only you can know your life. It deeply honors the uniqueness of each person’s experience and validates the importance of discovering for yourself without anyone else giving you final authority over the right and wrong of your experience. This is for extremely practical reasons. We just don’t know. The experiences of people taking meds are all over the map, from I’m Saved to They Ruined My Life.
If we validate the individual, put the power back in personal experience, and open up to experimenting with the unknown (based on as much information we can about other people’s experience and what the science does and does not know), we offer something that can in my mind truly help people: a sense of control of their own lives.
– will
thanks everyone,
just woke up, don’t feel good..
I just want to say to Will….I’m right with you…I don’t think what you’re saying is radical at all…and I am in ongoing conflict about this stuff…
I’d rather see and infrastructure of care (that doesn’t exist) where people wouldn’t need to take drugs either…right now there is no such thing
but the “necessary” argument…yeah…I’m there…and that’s why I point out the last time I was tempted to take a .5 mg of Risperdal I did not and I learned something from that. And I suggested it might be the last time I do it.
Kim,
and yes, I’m talking about adults here with free will…not children.
sb,
I honestly don’t know how your body manages coming on and off drugs…that I know my body would never tolerate…
I hope you’re able to make this the last time too.
Gianna,
I, too, don’t take an anti-drug position even though medication had such a terrible effect on my life as well. Hopefully, in the next few weeks, I’ll be done with Ativan and Adderall for good. This Ativan withdrawal is so awful, and for the last six nights I’ve been up until 4 or 5:00 a.m.
For me, Adderall isn’t difficult to withdraw from. Once I stop needing it, I have to withdraw or it causes a hypomania.
Having said that, like you, in the past, I, too, have used a small amount of medication after I’d stopped taking it–if things got really difficult. And inevitably it made me feel worse rather than better. When I think back and wonder why I took the medication, I realize now that it was usually based on fear. I was so worried that a down mood would slip into another deep depression that I would do anything to try and stop it.
In retrospect, I wish I had known then what I know now. But, there is also just so much pain and suffering that a person can stand. So, it’s never easy to make a decision, is it?
Susan
I might be missing something here. But feel I need to commit now or I’ll forget!
So, yes…I’ve been there, not in the exact situation as the meds have left you in a place that I am not. That’s not to say I don’t have problems from them, I do. Severe memory loss. Typos. Loss of balance, weight gain that I’m still trying to lose, etc. I remember I experimented with my husband with Seroquel (probably not a good idea) but since I was writing about it all the time and he knew how horribly the drug fucked me up on a low dosage-one night I cut one 50mg in half and he decided he wanted to take it. He woke up 18 hours later and could hardly speak for a day. I said, now, imagine taking that every single day. Or even better, imagine a CHILD taking it. Needless to say, he was furious and saddened.
When I was in a dark place last fall, my doctor prescribed Abilify and I DID NOT want to take it but felt I needed to in order to get out of the deep depression (and major anxiety) I was experiencing. It worked (temporarily) and then very quickly the nasty side effects kicked in and I weaned myself off the drug after taking it for only 4 weeks. There have been times I have wanted to take a Seroquel to simply ‘numb out’ and chose not to. However, the Xanax (the only med I’m taking right now) does the trick even though I dread the withdrawal from that.
When you’ve been on psych meds for as long as we have, sometimes that choice is just easier even though we know how disastrous they are. I would much rather schedule an acupuncture appointment and yet usually I a) can’t afford it or b) i’m too depressed to get out of the house.
you wrote:
“That being said, it’s unclear to me when and if or ever drugs are appropriate. I know that in some extreme instances they may become necessary for acute crisis management. But that is the only time I think they are necessary. What an acute crisis is, though, is no one’s right to determine but the person who is going to swallow that pill.”
I certainly think drugs should be off limits with children. It’s incredible how many children are medicated and very frightening. So many parents don’t know how to properly parent (ie. love, compassion, communication, etc) and so they go with the quick fix-whatever pill is being advertised by Big Pharma on the TV. Then the doctor foolishly and sometimes criminally prescribes the medication. Anyway, I agree with you…the drugs MAY be necessary for acute crisis and it’s not my call to make. (again, excluding children here)