Difficult Decision: Will I or Wont I







I went off my psychiatric meds over the course of several months without a problem to speak of, until I was off them for a week, when two things happened. First off the withdrawal dyskinesia (see brief video above) was getting better, but I was beginning to feel, well, nothing, no motivation, no pleasure, no enjoyment in doing anything. I know that many people do not do well on Abilify and hate it, in which case I would say it does little good and to stop taking it. For me, ever since I started taking it in 2006 or so, I have had motivation to start doing and learning art in a way I never felt before. And each time I stop  it, no matter how  fast or slowly, I go down the hole into no motivation or pleasure in anything. I do not like this situation at all, because Abilify also causes me severe double vision, but but but, I must say that i helps me do things, to finish things, to enjoy the process. I do NOT have any idea why this is,  but it has always been so since I started the drug, and I can no longer bear being off it, despite the side effects and disapproval by others. Whatever the damage that years of first generation neuroleptics have done to me, this one drug seems to help me do what I want to do..

.Hate me or not as you will, I cannot bear not taking it. Without it I have no impulse to do art or write, and my life is shit. Is that really what I should be satisfied with?

19 thoughts on “Difficult Decision: Will I or Wont I”

  1. Dear Carole and Linda Lee,

    Thank you so much for your suggestions, even advice. I much appreciate the support, especially as I went back to 2/3 the dose of the two anti-psychotic (NOT!) drugs I was on when happily doing Art. So far I can still see well enough and have depth perception, even though taking the meds! So that is great. I feel as if I might be able to start doing Art again too. At least I volunteered to make a poster for a certain organization here in Brattleboro, and while this is mostly just printed words, making a poster is at least along the lines of what I love to do!

    Thanks again, and thanks to everyone who commented as well,



  2. Dear Pam, experience is the best teacher. You have gone off the drugs enough to know that you do much better when you are taking at least a small dose. Please listen to your inner wisdom and do what us best for you.

    My husband was prescribed Abilify about 13years ago, and almost immediately he began having serious extra pyramidal effects. So he was taken off that drug ad put on a cocktail of several others.

    Two years ago, my husband tried doing a very slow taper off his psychotropic medications. He did not do well at all. Finally he decided to go back on his full dose of meds. I ageed that was best. Although he does have some negative side effects, overall he is in the best mental and physical condition that he has ever been in, since I have known him, that is. So for my husband, psychotropic medications seems to be the best thing.

    I am different. I did an ultra slow taper off my meds about 5 years ago. I also stopped caffeine. Now, my only prescribed medication is levothyroxine for my low thyroid condition. Like my husband, my mental and physical health is not perfect, but it is the best that I have been in many years. So for me, no psychotropic medication seems to be best. But I would go back on the meds, if I ever reach the point where I feel like I would be better off on them.

    Between the two of us, my husband on meds and me off of meds — overall, my husband is functioning a little better than I am, much of the time. I don’t like admitting that, but it is true.

    Please do what is best for you, right now, today. My husband is 69. I am going to be 65 in less than 2 months. As others have noted here in the comments, when you reach our age bracket, you don’t have years to spend getting off meds and recovering from meds.

    I love you, my friend. You are amazingly brilliant, talented, and wonderful. I am in awe of you!

  3. Hi Pam, There is no right or wrong, only choices. Our beliefs will show us what those choices bring. Take the Abilify Pam. You don’t owe anyone your life or loyalty for some cause. Your art is you. If Abilify helps, that take it. Nothing is perfect! Love you, Carole.

    Sent from my iPad


  4. I wonder if younger people in the withdrawal community even realize that some of us in our 60’s are looking ahead to far fewer years than you can conceive of. We do not have unlimited years left in us. Quality of Life takes on a new meaning when every minute you are alive, every second you take in a breath is a precious thing that can slip out of your hands any minute now. Our bodies have already been harmed enough already and we have been incarcerated in mental hospitals, diagnosed, tied down, shocked, isolated, jeered at, name-called, strip-searched, banned in our communities, shunned, and treated like animals long before SSRI’s and many of these new drugs were even invented. The least we can have now is to make our own choices WITHOUT JUDGMENT in the precious few years we have left.

    ,!dont tell me life is rewarding I am 65 years old what the fucki;g hell!!

  6. I should have said…then the recovery takes at least a couple of years. It could take 5-10 years. But life is rewarding along the way. You don’t wait years, to have a worthwhile life. The process, the adventure, is full of growth and healing and connection and meaning. In struggle you find your strength, you learn things, you develop who you are. It is deeply worthwhile, even though you don’t like how you feel. Before you feel better, you learn to take how you feel with a grain of salt, and connect to something deeper, to propel you forward. Your developing the ability to do this, leads you to grow in ways that later make your life amazing. Your life is on a basis few people ever experience.

    Few people can ever understand why I am who I am, at this point. What motivates me, isn’t like how most people live. It can feel lonely and I can feel misunderstood. But to get through what I went through, I had to learn something about the meaning of life, that few people ever think about. Now, I would never go back. You become a person who knows what is important and can live on that basis. You become strong and connected to what really matters to you, in a way that almost never happens to anyone. Who I am now, I wouldn’t trade for 23 years of having an easier life along the way. It is hard to explain. It is truly your choice and no one has a right to judge. They don’t know what it is like to be you. And struggle isn’t bad. We live in a culture that doesn’t support struggle very well. If you are struggling it can be hard to find support in our culture. You have a community that is invested in supporting each other through struggle. That is part of the point of the Hive- that people have enough support to make the choices they want, even if struggle is part of it. Part of informed consent is having enough support to pull off the choice you really want to make, and the Hive is built on that ethic.

    And I like you no matter what and I mean that.

  7. Pam, you should be making decisions based on what you want for your quality of life, based on your priorities and what makes you happy. Not based on what other people think.
    Using the lowest possible dose to get the effects you want, is a good move. The less you take of the drugs, the less damage they will do to your brain and body.
    I am worried you might not have full information about the drugs.
    It takes a long time and a lot of persistence, to recover from drug withdrawal. How you feel soon after tapering off the drugs, is shitty, for sure. That’s the withdrawal. If you believe that is how you will be as long as you are not on drugs, you think the only solution to your misery is to go back on them. What you don’t know is that if you stay off the drugs and remember what your ultimate goal is, you can get better and better, and eventually feel good. It’s a long and difficult path, but the outcome can be awesome. It can take years of persistence. Years of good nutrition and regular exercise and outdoor time, and emotional release, and enough rest. And exploring whether there’s a medical problem contributing. Years of making choices based on your long term goals, not based on your current emotional state. Most people are accustomed to living on the basis of their current emotional state- “motivated” or “unmotivated” or whatever. There’s another way, which involves systematically doing the things that will help you long term, without taking too seriously, one’s current emotional state. That’s just the drug withdrawal and not a basis for making choices. There’s inertia. Once you get out the door and get through the warm up period, you sometimes feel a little better. You keep at it. Over some years, your brain and body heal. Five or ten or fifteen years later, you have a good quality of life, better than you had ever hoped for. And you are no longer likely to be killed prematurely by the drug. For me, it was after about 6 years that I started to feel better. Now it’s been 23 years and I am glad I chose the path I did.

    My sister chose to keep taking Risperidone for 15 years. As is not uncommon, it killed her via abnormal clotting. She believed strongly that it’s ok to take psych drugs and it should not be looked down on. I agreed completely. However, there was something missing. It’s not all about defending that it’s ok. There is a bigger, more personal question to consider.

    It seems that you are motivated when you are off of drugs. You want to make art. You want to feel in such a way that facilitates making art. That is why you go back on the drugs. Because you are motivated. I wonder if you could make some art about how you feel when not taking any drugs. You can make the art on this topic while taking the drugs.

    The pace of tapering needs to be much slower than you realize. Going off over a few months is way too fast and will of course cause extreme withdrawal. Decreasing the dosage by 5 percent, stabilizing for a couple of months, etc, is more reliable. Getting off neurileptic drugs safely takes a couple of years at least. Then the recovery takes a couple of years. The longer you take the drugs, the harder it is to get off. The hardest part seems to be from a small dose, to nothing. Many people choose to remain on a very small dose indefinitely for this reason.

    It is your choice and I am supportive of you unconditionally, no matter what choices you make about your mental health. I am very supportive of you. I also want you to know that you do have a choice. And the choice is not just a choice between either taking the drugs, or feeling like shit forever. It seems that way, I realize.

  8. Thank you, Sharon and Everyone else who has commented. I went back on 7mg of Abilify plus 20mg of Geodon today and we will see If that is sufficient to relieve the various problems I encounter without them, but not so much as to impair my vision overly. Since I have also stopped the topamax/topiramate which may cause double vision, like many anticonvulsants do, this may work. If, in a week, I do not feel substantially better I will increase both drugs a bit more…and wait and see again. Thanks again for your support!

  9. Pam-

    You have more insight into yourself and your needs then pretty much anyone else I know. Your life and your work have meaning, so please make a good decision for yourself and don’t be overly influenced by the opinions of others. You have nothing to prove to anyone except to yourself. Thinking of you during this journey.

  10. Thank you for your supportive comment. Yes, I do have a better quality of life on this drug, usually balanced with Geodon, as it can “make me irritable” — double vision is a real problem but without art and the motivation to do it, my life is over…as is evidenced by my repeated tendency to become seriously suicidal after drug wears off. Not because I do not appreciate the value of life but because apathy and anhedonia and lack of simply wanting to do art feel so overwhelmingly awful…

  11. your experience and self-knowledge is as valuable as anyone else’s. i hadn’t thought anyone experienced truly better quality of life with a neuroleptic but if that is what you are saying, go for it. life is short and imperfect, we don’t get to have everything neatly in place and what a disaster it would be if we did!

  12. Pammie precious, follow your heart. Life is no race, much much damage has already been done to and by you. Make the most of whatever time you have left, if ablify helps you write and do art, and that’s so vip to you as I believe, then please you may consider staying on that one. I love you unconditionally but watching that video was hard.

  13. Eye doc says my vision is double from very old head injury and weak eye muscles I have had all my life. They diagnose double vision compensation from my head tilt which has distinguished me for several decades at least

    So I have double vision even so, it just gets worse with the Abilify

  14. Cabrogal and julie, I never said it was a neuroleptic effect, don’t believe it functions at all as an antipsychotic but I already take Ritalin for narcolepsy so whatever the drug does I have taken Ritalin all my adult life BUT never did Art or finished things till Abilify

  15. It’s gotta be your decision Pam. Only you know how the pills (or lack thereof) make you feel and only you can balance the pros and cons with respect to how you live and how you want to live.

    That said, you didn’t say how long your maximum period off Abilify was, so it’s hard to say whether your anhedonia and apathy might resolve with long enough abstinence. I’m sure you know there’s several stages to psychoactive drug withdrawal and some take much longer than others.

    If I were you I’d be hunting for professionals and (especially) former users who have experience with Abilify withdrawal to try to find out if their experiences can add a few landmarks to your own.

    Another thing to consider is whether there might be something other than atypical antipsychotics that can give similar positive effects but with different side-effects (esp long term) that you might find more tolerable. While I’m not pretending my situation is the same as yours I find that strong coffee is often enough to overcome apathy for a day, especially if I only use it infrequently. Maybe you can find something as innocuous that has a similar effect on you.

  16. It’s not that. I’m worried that stopping will be doing you NOT good. At our age, we have to consider how much our bodies have been altered by these chemicals, for better or worse, sadly. If stopping is gonna suck worse, stay on. I would NOT worry about trendiness when it’s YOUR life, not your Facebook page. Still, the double vision very well may be the tip of the iceberg, Pam. I had double vision from another drug, Lamictal. One day, I literally could not stand up at all! Apparently it had accumulated in my system without my knowledge. I’m thinking what you are benefiting from is the stimulant effect of the Abilify, not the neuroleptic effect. It DOES have a strong stimulant effect. Maybe you can think on that one.

  17. Sorry I clicked the thumbs down button by accident and cannot seem to change that! Anyhow thank you for your support. I too am sick of others who were on anti-depressants telling me to stop all the drugs when in fact they do me some good! I am nit saying that Abilify IS anything but it has helped me and despite the rather worrisome side effects I would rather literally die than not be able to do Art or whatever else it enables or “abilifies” me to do.

  18. Take it. Life is too short. And the drugs are not a popularity contest. The drug withdrawal community is mostly comprised of people half our age anyway. Or run by them. And they don’t take into account issues us older people have.

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