You should have seen her before the Abilify

Image Hosted by ImageShack.usI came across this sad story while surfing at live journal tonight. There is no known treatment for tardive dyskinesia, an undisputed, iatrogenic side effect of neuroleptic drugs. Abilify is being used now to treat a wide array of *disorders*, not just Schizophrenia, for which it was originally designed.


I went to visit my sister over the holidays, who has developed tardive dyskinesia after taking a relatively low dose of Abilify for about 2-3 years. This was the first time I saw her since she developed the condition. I have to say I was absolutely HORRIFIED by seeing the symptoms of this horrendous debilitating side effect first-hand, and I had to briefly go to another part of the restaurant where we had all met for lunch just to conceal my tears. She cannot control her mouth anymore. Her jaw is almost constantly moving in a continual chewing motion, and she often sticks her tongue out uncontrollably and makes loud slurping sounds. She is now treated by everyone she meets as a disabled individual, which was not the case previously, even though she has struggled with some mental issues. She can no longer function as a respected member of society. She has been marginalized just because of her appearance, which is an unfortunate, yet unavoidable aspect of our society. And the side effect could be permanent, or even progress to worse symptoms. Because the ultimate travesty of all is that her psychiatrist could not care less about her condition and has told her to continue to take Abilify at the same dose (5 mg). At my urging, she has reduced the dose to 2.5 mg on her own, but she is afraid to reduce it any further because of dire warnings her pdoc has given her about hallucinations returning (she would sometimes see and hear things while going to sleep, that’s her only “psychotic” symptom, although she does exhibit depression as well). So chances are that the tardive dyskinesia could continue to get worse. Her pdoc didn’t even tell her she had TD, apparently hoping she wouldn’t notice (?!) – a general medical practitioner identified it when she went for a checkup. I find that incredibly irresponsible of her pdoc. He has no interest in her long-term well-being at all… Her life is over.

I hope her family can keep that from happening. But her sister is right, lives get ruined, there is a “sick role” trajectory and I wonder how anyone in this woman’s shoes can avoid taking it on. Once you come to see that that is now your face in the mirror air-biting, tongue protruding lip-smacking and grimacing back at you it’s a predictable slide from there into brute survival inside the system that created you. Unemployment, halfway houses, residential treatment facilities, wandering in libraries, absorbing the stigmata of the shuffling sick role you can’t hide because your face is contorted by the drug induced grotesquery of sucking tics and grimaces, because everyone knows that’s what a schizophrenic looks like.

She had a right, a human right to make an informed choice. If only people who heard voices were human.

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Posted in Biobabble, Kick it over, Mental illness, Narrative competence, Pharmageddon
37 comments on “You should have seen her before the Abilify
  1. christin says:

    This is especially creepy as I was just prescribed Abilify and am having problems reading on it.

  2. flawedplan says:

    I was on it for a couple weeks, went hypomanic and got a lot of work done. I didn’t want to go off it, I tried to negotiate a smaller dose, but after 3 days without sleep I gave in and went off it as ordered by my p-doc.
    Now this. TD is not supposed to happen with atypicals. That’s why they cost 600 times the typicals. It’s a puzzle.

  3. Alison Tuck says:

    I feel really sad to read this woman’s experience, it shows the deep effect of such stuff-ups. Not just the individual but their family and friends suffer terribly as well.

  4. thememoryartist says:

    I tried one dose of Abilify one time at the urging of my current psychiatrist who is not fond of the idea of me being off of meds for over a year now . His concern was that I should take something to “prevent” my “bipolar disorder” from future episodes, despite my lack of symptoms for over a year (and I supposedly had rapid cycling as part of my diagnosis). He felt much better when I left his office with a prescription for Abilify . I was glad to put him at ease .

    Just one pill left me feeling as crazed as I used to back when I was on all the meds . It was a nearly 24 hour trip through the old hell that I lived in before stopping the meds. I flushed the $640 tablets of insanity in a bottle down the toilet as soon as I could think straight. I haven’t gone back to see him since . I hope he’s feeling well .

    I often think the doctors should be required to sample the meds they prescribe .

  5. alicia says:

    I love abilify. it’s saved my life basically. Also, it’s not true that they DO NOT cause TD, they just have a less chance of causing it. I have zero side effects on abilify and have been stable for over 2 years. Before that I thought I was jesus and other such nonsense.

  6. flawedplan says:

    How wonderful for you Alicia. Nothing says I’m liberated from nonsense like loving your drugs.

  7. thememoryartist says:

    “I have zero side effects on abilify and have been stable
    for over 2 years. Before that I thought I was jesus and
    other such nonsense.”

    ……So who do you think you are now Alicia ?

  8. I am on abilify, and this article scares me. Like the girl in the article, my only psychotic symptoms were the hallucinations before sleep or during sleep which is a common phenomenon known as sleep paralysis. I have also been depressed on and off for years. My side effects include blurred vision, drowsiness and a faint difference in my walking gait- which my psychiatrist tells me will subside in two to three weeks. I am on 10 mg.

  9. d says:

    do you remember or happen to have the link?

    and to thememoryartist:
    “I often think the doctors should be required to sample the meds they prescribe .”
    I agree 100%

  10. Steve Sargent says:

    I have been on abilify for 3 weeks. We have been ramping up the dose very slowly. I have tried dozens of treatments over the years. I have been hopeful, but have been dissapointed every time a new drug has been tried. Abilify just seems to make me dopey.I once asked if some bipolar people were treatment resistive,and got yelled at.I don’t trust meds or pdocs.

  11. thememoryartist says:

    “I have tried dozens of treatments over the years. I have been hopeful, but have been disappointed every time a new drug has been tried.”

    This might be a clue Steve.
    Have you tried dozens of “treatments” or dozens of drugs ? Are you a PERSON with mental health problems, or are you a BIPOLAR person? Don’t let yourself be defined by the label you’ve been given. It may not even be accurate, and if it’s not- the drugs won’t do much of anything but make you “dopey” and unable to engage in the kind of treatment that could really help.

    If you don’t trust them, then why are you letting them decide these things for you? It is your life.

  12. Nick says:

    I have also struggled with abilify and i whole heartedly agree with steve, i don’t trust any of these medications, let alone my doc. As for the abilify, at one point i was up to 25 mg’s and i honestly felt like a zombie. I started taking abilify when i was 18, and at first it slowed down my thought process, which was needed at the time, but it got to a point where i didn’t even know who i was anymore, and i’ve been off for a while now, but i still haven’t been able to regain my personality and social skills, which is scaring the crap out of me. I don’t know whether these feelings of confusion are permanent, i’ve felt like this for a long time.

  13. Kyle says:

    Wow. I understand whole heartedly what yall are going through. I have been diagnosed as ADD, Schizoaffective, Bipolar 1, and the one that seems to stick now is bipolar. I have taken every med under the sun. From depakote to abilify. Serioulsy, you name it and I have tried it. I see doctors because off meds I am angry, and outrageous. I sometimes even think off meds, that my mom wants to have sexual intercouse with me. I also get very racist off meds. I have been to jail recently when I quit my medicine. That is what I am facing. I am on here today researching this for the unusual night sweats 10mg of abilify is giving me. Also I have moderate to severe akathasia which drives me to drink alcohol and eat like a pig. Yes, over the years I have gained and lost over 100 pounds. Funny, the reason the ball got rolling on this little fun trip of hell, was a classmate of mine suggested to my mother I was ADD. Anyhow, I haven’t stopped seeing doctors for the last 8 years as my family now thinks I am sick. I pray some new drug comes out to help us. I can’t help but think of the phamacutical fat cats somewhere lounging in the sun off my 1000 dollar a month nightmare. P.S. This is hard on my faith as a Christian as well. I don’t want tardive diskinesia although as a christian I think to suffer for christ is glory. Maybe I am crazy. I don’t think I am suffering for anyone. I feel evil and hopeless.

    • Paul Daly says:

      Hi some how I am connecting here.
      Abstractly feeling of connecting.
      My father a strict catholic that lived in our basement for much of my childhood. He obviously was mentally ill . He forced his belief on on our family , before he died at 63 of cancer .
      I myself have been diagnosed with everything under the sun. But now at 43 I’m reflecting on how narrowing ” some belief structures can be ” .
      My uncle told me one time that when a person chooses to believe in anything it becomes a truth to them , and then solidifies into a fact .
      Depending on what it is we are believing in determines our fact this can help us or hurt us .
      But we can choose.
      Struggling too / hope it helps

  14. flawedplan says:

    Kyle, it sounds like the meds and maybe the religion are suppressing personality traits that are causing you and others some problems. I don’t think accusations, racism, raging, substance abuse and law-breaking are an illness, they’re behaviors resulting from psychological problems. I wouldn’t advise anyone to go off meds, but I am a big believer in good couseling, and recommend you find a therapist to work with you. Meanwhile it’s not going to help you at all to think of yourself as this evil obscene inhuman mistake, do me a favor and try to see yourself as a person who has some serious fucking problems, and look to others who’ve had similar issues and what they did to resolve them. Read their biographies, John Lennon is a good start.

  15. Autistic Rampage says:

    My son is autistic and use to attack us daily. Two weeks ago he was started on 10 mg of Abilify. One week ago it was increased to 15 mg. My son has been on millions of medications including up to 8 mg of Risperdal daily. Nothing, nothing has worked until he started this medication.

    This medication is WONDERFUL! My son has be active in school, home and with family activities. He no longer attacks his parents. He no longer curses or punches holes in the walls.

    I hope this medication works this well for it’s duration. My son will continue to take it as long as it does.

    As far as the TD side effects – bring it on…if it’s necessary. Life before Abilify was horrible…now it wonderful.

  16. flawedplan says:

    And spewing self-congratulatory horseshit may ease what’s left of your parental guilt about using dangerous chemical restraints on a child, but sorry, not here.

  17. hymes says:

    Bring it on? Are you a George Bush clone? Who’s going to suffer from the T.D.? Not you. Do you know it’s permanent and disfiguring and sometimes causes people to kill themselves? Life is wonderful for who?

    Ever thought of therapy or family counseling or looked at why your son might be attacking you? You don’t think it is anything to do with you or your family’s dynamics? He’s just “damaged” or some such. Couldn’t be that you trigger his rages in any way could it?

    Bring it on huh, about permanent side effects for your child. I bet child services would be interested to hear your attitude towards your child.

  18. thememoryartist says:

    Not here, no…

    If I had a parent like that, I’d attack her, curse her and punch holes in the wall…oh wait…I do have a parent like that…and the meds work much better when she takes them for herself.

    “If there is anything we wish to change in the child, we should first examine it and see whether it is not something that could better be changed in ourselves.”
    —Carl Jung

  19. Tay says:

    Hallucination when falling asleep, ie a hypnogogic hallucination, can be a sign/symptom of narcolepsy. Lots of narcoleptics end up being treated for mental disorders they dont really have because of hallucination symptoms and sleep disturbances. A qualified Sleep Disorders specialist might be the key to a clear understanding.

  20. Casey says:

    Hi. Just recently found your blog, and am now in love.

    I just wanted to comment on this post. I work in a field through which I sometimes come into contact with folks who have TD. I don’t think patients are warned that the extrapyramidal effects of atypicals are irreversible after a certain point, or that children are at a much higher risk of developing tardive movement disorders.

    Here’s an article on pediatric TD.

    Especially note that only 19% of the children on atypicals had ever experienced psychotic symptoms. It’s just sick.

    Keep writing. Do you mind if I link to you?

  21. flawedplan says:

    Thanks for the chops and the link. I don’t mind if you link to me, and don’t think you need to worry about asking permission, links are the currency of the blogosphere, linking to someone is like handing them blog dollars. There was an excellent article on blogs in the New Yorker last week:

    When the blog boom came, the tone of the blogosphere began to shift. A lot of the new blogs—though certainly not all of them—weren’t so much filters for the Web as vents for opinion and self-revelation. Instead of figuring out ways to serve up good fresh finds, many of the new bloggers were fixated on getting found. So the very significance of linking began to change. The links that had once mattered were the ones you offered on your blog, the so-called outbound links pointing to other sites. Now the links that mattered most—and still do—are those on other blogs pointing toward your blog, the so-called inbound links. Those are the ones that blog-trackers like Technorati count. They are the measure of fame.

    Now that fame and links are one and the same, there are bloggers out there who will do practically anything— start rumors, tell lies, pick fights, create fake personas, and post embarrassing videos—to get noticed and linked to. They are, in the parlance of the blogosphere, “link whores.”

    IOW, you’re doing me a favor, thanks.

  22. Samantha says:

    I was on Abilify a few weeks ago, I was taking 15mg of it and I honestly felt like a zombie. I couldn’t even function anymore. It was horrible. I slurred my words, drooled, couldn’t walk right, couldn’t read, couldn’t concentrate. My jaw was stuck in awkward positions. Which was syptoms of TD. Thank lord we stopped it b4 it go too bad. Abilify is a horrible medicine to be on. I was on it for hearing voices all through the day. His name was Fred and he is mean to people and makes fun of me. He is still in my head. I hear him a lot.

  23. billy says:

    ive been on abilify for 4 weeks now at 5mg now starting ten tomorrow morning idk ive been prety good except for night sweats its pissing me off i hope my life gets better im trying to hand it all over to god and let him take care of it another thing ive gained 15 pounds in 3 weeks if anyone has any comments on that im also taking luvox at 200 mg a day

  24. flawedplan says:

    hey billy,

    The only comments I have concern being careful about accepting advice from people online concerning medication changes. And handing it over to God what does that mean, ignoring what goes on and hope any problems will disappear? I’m doing that right now with a mouse in my house, and something tells me that has to change or I’ll be seeing big problems down the line. No disrespect, but magical thinking and asking strangers online to figure it out for you is asking for trouble. Work with your doctor, and if your doctor won’t work with you, find one who will.

  25. Jake T. Snake says:

    So damn tired of psychiatrists prescribing dangerous medications to people, while not telling them the risks of being treated for diagnoses that have no measurable quantifiable parameters. Antipsychotic medications are neurotoxins and the new ones are no better than the older agents, regardless of what your psychiatrist (who is only telling you what the pharmaceutical rep told him) says. Thorazine, the original antipsychotic medication given to people in the late 1940s and 1950s was used in this country in the 1930s to kill parasites on pigs. The department of agriculture gave it to farmers. All those side effects, those are your body’s reaction to a neurotoxin. There are alternatives, do a google search on the soteria project. What would you do if you found out your difficulties weren’t biochemical?

  26. Annette the mom says:

    I read through this line of messages as I struggle after 22 years of keeping my kid off drugs. He is a great guy who happens to be autistic. Yes, we fought through all the “isms” through the years, but each battle won was a victory and Imust admit, I became smug. See what good parents we are- we did it and you can;t you drug mongers-you get my drift, when things go your way you can afford to judge others. The past three months have been sheer hell to the point where I became in danger from my son. His violent outbursts followed by tears and moans of pain from him have broke my heart and spirit. Diet? Excercise? Talking with him? Vitamins? Aminos? One on One. This child has had it all and this stuff just escalated. I finally broke down and begged a trusted psych doc I have known for years and asked what could I do? I was scared this formerly happy and loving young man would hurt me, hurt himself or others. After discussing the symptoms and patterns of behavior-which is very odd and scary- he laughs as he grabs my arms and starts to twist them- mind you, I am 5′ and he is 6′. Watching my husband have to hold on to him as he twists and turns and screams and fights. It is worse than anything I have ever experienced in my life-this boy whom we love and would do anything for. So, as his mom, I cannot and will not allow my SMUGNESS at being drug free keep him from some possible relief and a hope for better days. Does that mean we will stop working with him and his diet andhis social life (which has stopped as we can no longer take him out as much not knowing what will happen-where he used to shake people;s hands and say hi, well, now he might shove them over)? No, it means tonight we try 2.5 mg of abilify and see if it helps for the next few weeks. Watch him and see if his pain is releived. EASY? For me? For him? It is the hardest thing to do but if he was diabetic I would give him insulin if the diet did not work. Having gone through skirmishes with his behaviour over the years-some bad and some worse but always being able to “bring him back” I still have to admit I feel like I have failed. It kills me to think I might be hurting him to help him. But I will do it as this whole road since he was 2 has had no guidebooks. For every opinion there is another opposite. I will never judge another again. My arms may be bruised, and so is my heart, but I will still fight for my son, not against him. How dare anyone, myself included, know what is right for each person since nobody knows. I get asked why he is atuistic and I say GORK. God only really knows-I think it is a touch of genetics & fevers (from ear infections) tossed in with vaccines-with the wrong ingredients BAM the kiddo loses the autisitc lottery. Not everyone just those with the right “mix”. Drugs should always be the last resort. As I said, this is 20 years after battling to keep off of them and I will stop them if the gain does not overshadow the pain. He is miserable and unhappy-he literally moans in his bed when he finally will go in there. We have had entire body checked out with virtually every test known to mankind- this is difficult because he is very limited verbally-all he can say is OW or cry when he is hurting. He keeps smacking his head and I realize now this was his way over the past few months to let me know something was really wrong- that his head was hurt. You see over the years I talk to him at night every so often about how “his brain was hurt when he was a little guy but he worked so darn hard he fixed it” and that always makes him feel so good. His eyes lock on mine and he knows that I know. Without him having to say anything. He has one word that is very special- it is aboo. When he says aboo it means that all is right in his world- with you-with him-with life. He has not said abou in months. He has had some major changes in life that I thought were the casue (leaving a high school that he loved and was treated very well at) . But no matter the care in assuring that all around himwere careful of his thoughts and feelings, he still has gone “away” to a very dark place. So, if abilify or something else will light it up the way for him to leave that place of sadness – then so be it. I will keep you posted. But again, I still feel like a failure. FUnny, I bought into that horrible pattern among people who love those with special needs- somehow my way was better. That is such an ugly thing. Like those parents of kids in special olympics who try to make yo feel bad because your kid can’t jump so to speak. Anyway, I didn’t mean to write a book but I have never written about this before. I am really in a struggle with my decision…being entrusted with someone’s life is no small thing. It is a constant to remind myself through this horrible past time to remember that I love him-that he does not mean to strike at me. I think I get so much of it in a way because he is angry I have been unable to relieve his pain this time. So, here we are. God I hope it works for him. If not, I will keep looking. I am his voice.
    Keep up the good fight my friends. We are all in this together even if we don’t know each other.

  27. flawedplan says:

    After reading that I can’t imagine anyone attacking you for trying Abilify, but it won’t happen here. The drugs need improving, that’s not on you.

  28. Annette the mom says:

    Yeah, the drugs do need some work -some should be off the market entirely. I think in some strange way this was *kicked-off* from a run of bactrimh e was on earlier last spring. He had developed a boil and staf- er doc gave him bactrim and it set off his body within 72 hours-blood coming out of him where it should not… SO idid some research and I find out that bactrim is banned in the UK for its horrible side effects. I research an aspect of the pharma industry for a living -not the drug side-but I invariably meet with researchers and people from the companies. Here is what is weird. Every one of them has been supportive over the years when I have met up with them at conferences and get around to talking about my kiddo. And they are the first ones to say (now remember, these are the researchers, not sales guys) hold off on taking any recently approved drug for at least five years after approval- the clinical tests are just too narrow to define what could happen. This has been true down the line across all companies. They say the same thing. And they also admit that some old drugs, like bactrim- affect some so badly but helps enough others that it cannot be taken off the market. Hmmm. See what I mean. It is a crazy catch 22. I kept him off drugs and then there is a chance that an antibiotic drug given for an infection could have set off his brain chemistry to have us in this hell hole today. Here is a note- he woke up smiling and friendly this morning a bit groggy and I knew better, but i thought OH JOY it is a miracle there he is—then bam, starts throwing things- so husband has taken hiim for a drive before he set off on me-which was what was happening. We shall keep trying. Bye now

  29. John says:

    My daughter developed Type 1 Diabetes, about three months after starting Abilify. We took her off immediately, upon diagnosis.

  30. HALEY says:

    i was on abilify at a very low dose last year around january or february.. it was an absolute nightmare.. i suffered from panic attacks, uncontrolld movements and it was absolutely horrible. i have never ever felt the way i did, i really thiought i was dying. now i am only on zoloft for depression and have never felt anything like that again. abilify really shook my trust in doctors and medicines…

  31. markps2 says:

    Annette the mom “His violent outbursts followed by tears and moans of pain from him have broke my heart and spirit. Diet? Excercise? Talking with him? Vitamins? Aminos? One on One. This child has had it all and this stuff just escalated.”

    Age 22? I’ld guess you are pretending he doesn’t have a male sex organ and is still a boy-child, but he is now in fact a man-child. Testosterone in a normal healthy animal tends to increase violent behaviour. Ask God why, don’t ask me.
    Josey Vogels

    Thursday, April 23, 2009

    Most health professionals would rather hang on to the belief that this group is asexual. The line they usually get from the staff when they ask to come and speak at their homes is: “our clients do not have sex.”

    Nina de Vries

    Sexual services for the severely mentally disabled are controversial, however: some think that these people should be treated as equivalent to children, and therefore cannot give valid permission, or do not need to engage in sexual behavior. Others fear that de Vries might misinterpret the often very subtle communication attempts of her clients. She maintains that although her clients may not be able to communicate verbally they usually are very clear in their communication; they do have a need for sexuality, and denial of this essential human need may lead to aggression or auto-aggression.

  32. Terri says:

    I know this has probably been sid before but for me anyway , the risks of psychosis is scarier than the side effects possible. I am currentLy on Risperidone because I had a psychotic break due to taking a very high prescribed dose of Adderall. I am narcoleptic and bipolar plus I don’ assimilate drugs like others because of a gastric bypass done 10 years ago. Trying to balance all that out led to the crisis I had where I ended up believEing cars were following me and my sons and husband were merely stand-INS for the real ones. I cannot fully artculate the absolut terror I went through or the he’ll I put my family through in the process. Now I am ‘we’ll’.again and so very grateful for the existance of this class of drugs. When you roll the dice with medication you always take a risk that you might end with with a bad side effect. He’ll even aspirin can kill if you are one of the unlikely few who have an allergy to it. I think the bottom line and ultimate responsibilty lies with the prescribing doctor making them accountable for not explaining fully all the major side effects and their risks prior to writing the script. Then a follow up appt. would need to be made to watch the patient carefully for signs of such devastating side effects. EVERY drug has dangerous if not deadly side effects and should be treated with the respect they deserve and the caution the prescribing of them would warrant.

  33. flawedplan says:

    I question the assumption that dangerous & disabling drugs are the only method for coming out of psychosis. Less harmful methods are being recorded by people in books, reports and narratives all over the Internet. Why are these more humane protocols being suppressed? Pharma lobbyists outnumber all other interest groups in Washington, psychiatrists like dealing with the medical model of mental illness, it gives them credibility as doctors, NAMI has everyone thinking psychosis is satanic, alternatives are time-consuming and iffy and so forth. Other cultures, other times don’t arbitrarily put people on Abilify long term and screw the consequences, and they have better outcomes. Why do we?

  34. Kane says:

    im currently on abilify and autistic. this is taking me slowly. i am seeing faint colors and now my vision is “cutting” and seeing stuff in sand. this medicine made me high at 10mg, gave me fatiuge. now i am at 7.5mg and still making me at a slight high. this medicine is worse than crack. why did this get approved by the FDA???

  35. Beth H. says:

    Well, damn. I’ve suffered with depression for 30 years/antidepressants for15+ of varying types and have been on Pristiq for 2 years with fairly good success. About 8 months ago I had a depressive episode that was pretty bad. My primary doc (I don’t see a psychiatrist) put me on Abilify and titrated it up to 5 mg. Thought my world had changed! Great improvement!…till about 3 weeks ago I began clenching my jaw nearly continuously and clenching off to one side. My jaws are sore. For about 4 months (I’ve noticed retrospectively) a significant hand tremor with almost a tic-like movement occasionally to the left hand. My eyes seem to be wide open and sometimes I notice rapid breathing without shortness of breath. Was in the doctors office this week with my daughter and was reading a magazine. Saw an ad for Abilify and read the back side of it for side effects, etc. I was stunned to find TD as a side effect. Since then I’ve been reading on the internet and have become quite scared. Really scared. I cut my Abilify to every other day in an attempt to wean myself off. 2 days and no change. I see my doctor tomorrow. Do benzos like Xanax or clonipin help at all? Does anything help? I also seem to have this inner feeling of restlessness and anxiety. Is that part of TD? Please help!

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