Talk About Abilify with Pamela

ARC_Talk_About_Meds_Banner_Pamela

 

 

 

I have been asked, by The Recall Center http://www.recallcenter.com, see also http://www.recallcenter.com/xarelto/side-effects/ to “talk about my medications” so here I am, talking about my “favorite psychotropic drug, NOT..”: Abilify.

 

Why do I take Abilify?

 

I take Abilify, well, why do I take Abilify? I was prescribed Abilify because of the diagnosis of schizophrenia many years ago, and I usually take it along with another anti-psychotic drug (Geodon). But frankly the reason that I, I myself, take Abilify for now has nothing to do with psychosis or schizophrenia. I take Abilify simply and only because I have this weird feeling that it helps me write and do art. Ever since I have been taking it, or the two drugs together, I have had no trouble doing art at any time or even writing when I want to. The extra plus is that I can finish longer term projects, ones that I start on one day and have to finish over time. In the past this was a problem, but it seems to not be so difficult for me any more. I do not know for certain whether this is due to the effects of the Abilify/Geodon combination, but it feels like it, since I was never capable of finishing projects so easily and reliably before then. On the other hand, I believe that I can do these things myself now, and that once I get used to living here, in my new state of Vermont, I will choose to sloooowly go off the medications for good.

 

 

How do I remember to take my medicine?

In truth, I often forget to take my medications, but for the past thirteen years I had a Visiting Nurse come to remind me. And now that I live in another state, where this service is not available, I have a med tray that is delivered weekly. I hope that I will be able, by seeing this tray openly on display on my table, to remember to take the ones I want. At least for as long as I want to take them.

 

I have been asked about side effects of this drug, but I would say, 1) all “side effects” of drugs are the effects of the drug, and you cannot tell a person that she is only suffering “side effects” especially if they are serious enough to cause distress. 2) there are very serious and troubling effects possible with Abilify, so my experience is not necessarily typical 3) I used to feel very irritable on Abilify, but no longer 4) usually I add Geodon to help me sleep and calm the anxiety that Abilify can induce

 

Where do I go for Medical support? I just a few weeks ago moved to Vermont, so I do not yet have a Primary Care Provider, but I do have a psychiatric nurse practitioner who will see me – so far, at any rate – once a month. For medical issues, at this time, I do not know whom I will see, but in Connecticut I used to have an APRN at a doctor’s office. I also was able to get to an Urgent Care center easily, in CT. That is not possible here in rural VT. So in the event of a medical emergency, I do not know exactly what I would do, except call 911 and hope for the best!

 

Before taking Abilify, or ANY anti-psychotic drug, here are the questions that I think you should ask your doctors: You should ask, first of all, why he or she is prescribing an anti-psychotic medication for you. Does he or she believe you are psychotic? If not, why prescribe such a powerful and possibly devastating drug? And if so, why? Doctors should be willing to answer this openly and honestly and if they will not, then I do not believe that you should listen to their advice, but get a second opinion. You never know who might derive financial gains from prescribing a medication that is not available generically. Also, why is your doctor not being honest with you? I would never feel comfortable in a situation like that…

 

 

Ask your doctor what to expect after taking this drug and when to expect the effects, good or bad. What does he or she anticipate you will experience as a benefit and what he or she thinks you might experience on the down side? Ask them to be honest about this and why they feel it is worth the cost/benefit ratio to you.

 

Abilify is extremely expensive and non-generic until 2015, when a generic form is scheduled to become available. So if you can, I would ask your doctors about why they are prescribing this particular drug and not another. There may be very good reasons for it, such as a low incidence of weight gain, and little sedation, at least at doses below 15mg. Nevertheless, I would want to be certain that there were no financial inducements such as stock holdings in the pharmaceutical company involved etc.

 

 

There are ALWAYS risks involved when you take pscho-active medications, or any drug, but anti-psychotic drugs can be especially problematic for some people. Even though Abilify causes fewer problems with massive weight gain, for many people this is not always the case and weight gain as well as Type 2 diabetes, with or without weight increase has been known to occur on Abilify. Over-activation and irritability have been reported frequently, in my experience. And many people I know who have taken Abilify have told me that they have trouble sleeping if they take it at night.

 

Published research suggests that 30mg of Abilify is no more “effective” than 15mg. From my own experience, I can only say that at 15 mg Abilify is quite activating but at 20-30mg it becomes suddenly sedating and less helpful. This is why so many people refer to Abilify dosing as “Less is more.” They mean in some sense that the lower doses work better than the higher ones, unless the sole goal is sedation, in which case I would say there are better drugs for that purpose and safer ones.

 

As for drug interactions, I am not aware of any important ones.

 

Finally, the three main things I wish I knew before taking Abilify are what I wish I’d known before I took ANY anti-psychotic drug many years ago: that if I took what they gave me, and kept taking it, 1) I might be disabled for the rest of my life 2) it might induce chronic/episodic psychosis – i.e. stop the natural process of recovery in its tracks 3) NOT that my brain’s neurochemistry was already “out of balance” but that my brain and its neurochemistry would be changed and destabilized by the drug itself…

 

That is what I wish I knew before taking Abilify. Before I take any drug from now on, I will find out these things and determine for myself whether the cost/benefit ratio really makes sense.

 

 

But on the whole I would say that NO DRUG developed in the last 20 years has been adequately or honestly researched for any pharma company to make a claim about either its efficacy or its safety. NONE. So I would on that basis probably never take a new drug from now on. There is not a drug company out there that I trust to have done ANY new brain research, since it’s all based on junk and garbage theories that arose from “back researching” Thorazine, which was bogus in the first place. So why would I want to take a drug that was developed from research coming out of that cesspit?

 

I am 62 years old. I am NOT suicidal and I certainly do not want MDs with murder on their brains to euthanize me with their psycho-drugs, or to use me as some guinea pig to determine how much control they can have over people…NO MORE DRUGs, NO MORE DOCTORS, NO MORE HOSPITALS AND HOSPITAL ABUSES.

 

 

I may take a couple of drugs today in order to survive the transition from CT to VT, but you must understand that my brain was already damaged from the years of having been given them against my will. So I HAVE AN ALREADY DAMAGED BRAIN, from the medications I’ve already taken.

 

I do not advise anyone with a more or less intact brain to take an anti-psychotic drug, not ever, not if you can avoid it and certainly not for “the rest of your life.” NEVER take any drug on an ongoing, “forever” basis. ALWAYS re-evaluate your need for it.

 

And that is all I am going to say about Abilify. If you take Abilify for “depression” you have come to the wrong place. Nevertheless, I have written a blog post just for you. Do a search on “Add Abilify” and you should find it. But you won’t like it any more than this one. Sorry about that.

 

8 thoughts on “Talk About Abilify with Pamela”

  1. Dear, DEAR Pam… your kind affirming words are so healing. You made me cry happy tears just now.

    I do want to correct one thing which I probably did not make clear enough in my previous comment: I was already diagnosed with schizophrenia, BEFORE being put on the experimental drug that made my symptoms so much worse. So I cannot blame my psychotic break at age 14 to a bad experimental drug, much as I would like to.

    Also, because scrupulous honesty is super important to me, I need to clarify one other thing: I am not absolutely certain that the experimental drug I was given at age 15 was in fact LSD. After all these years, I cannot remember precisely what the nurse said. Nor can I remember her name, unfortunately. I wish I could contact her and ask for her corroboration of my story. However she is probably no longer alive, so even if I could remember her name it wouldn’t do much good. Although she was young at the time, I am talking about an event that happened either in late 1968 or early 1969. Sadly, most of the adults from then are now gone.

    Despite my imperfect memory of such a long-ago event, I am positive that a nurse did tell me I was one of a group of patients who were being given an experimental drug, against our knowledge and, of course, without our consent. I also definitely remember the nurse telling me that the other patients who were on this experimental drug were having the same kind of terrifying hallucinations I was having.

    I believe — although I am not positive about this — that I remember what the experimental pill looked like. If I remember correctly, it was perfectly round and very small, about the size of the little round pellets my stepbrothers used in their B-B guns. This tiny round pill was either bright orange or bright red in color.

    Although I am not 100% positive that the experimental drug I was given was LSD, I suspect it probably was, for several reasons. For one thing, the horrible effect it had on me, of suddenly thinking that I could see the molecules in everything dancing and whirling all around… seeing the walls breathe in and out, while the floor writhed and undulated under my feet like a snake. The very air all around me seemed to be alive with dancing, whirling electrons, vibrating and spinning in a dizzying mass, like a large school of tiny Minnows, or a massive flock of migrating Barn Swallows.

    I had never, not once, seen anything “weird,” other than a couple of times when I had a brief visual hallucination. Both times, I thought I was seeing a ghost, the ethereal spirit of one of the voices I was hearing. Other than this, which only happened a couple of times and was over very quickly, the world around me remained solid and “real,” even during the worst of my teenage psychotic break – that is, the world appeared solid, real, and normal, until I was given that horrible mind-blowing experimental drug.

    Another reason why I suspect I was given LSD during my two year stay in a state mental hospital, is because of the numerous flashbacks I later had, which occurred for several years after I was taken off the drug. LSD is known to cause flashbacks in some individuals. These flashbacks feel like you are having a brief repeat “trip,” or so I have been told by someone who used LSD on her own. That is exactly what I experienced, brief, but very scary and disorienting repeat “trips.” My flashbacks gradually grew less frequent, and became less intense and shorter in duration, until about 4 years after I was out of the institution. The last time I had to pull off the road while driving my car because the pavement suddenly began to writhe and undulate, I was 20, my two-year-old son was sitting in the back seat, and I was pregnant with my daughter. Scary! But at least that was the last time, a little over 40 years ago.

    Pam, as you know, the first thing you lose when you are labeled mentally ill is your credibility. The next thing I am going to tell you sounds much too insane to be true. But if you search it online, you will find many credible sources verifying that this.

    A few years ago I was researching schizophrenia for the memoir I am still trying to write, when I came across some articles which claimed that the CIA performed numerous LSD experiments on: US military personnel, and on dozens of schizophrenic patients who were incarcerated in more than 30 institutions across our country, and on non-mentally ill prisoners, and on orphans residing in state-run orphanages!! People with “no rights,” in other words!

    It sounds too crazy to be true, doesn’t it? It sounds as evil and conscienceless as the Nazis! I don’t want to believe it’s true! However, according to numerous online sources, these and other diabolical CIA experiments really did happen, up until around 1972 or 1973.

    Most of the CIA’s records about their LSD and other heinous experiments were ordered destroyed by the then-CIA director in the early 1970s. Apparently, in the wake of Watergate, there was a lot of paper shredding going on. However, another cache of records was later found, which led to a Senate Hearing on the matter. Here is an excerpt of Senator Ted Kennedy testifying before the Senate. (I copied the following excerpt from this Wikipedia link: http://en.wikipedia.org/wiki/Project_MKUltra )

    On the Senate floor in 1977, Senator Ted Kennedy said:

    The Deputy Director of the CIA revealed that over thirty universities and institutions were involved in an “extensive testing and experimentation” program which included covert drug tests on unwitting citizens “at all social levels, high and low, native Americans and foreign.” Several of these tests involved the administration of LSD to “unwitting subjects in social situations.” At least one death, that of Dr. Olson, resulted from these activities. The Agency itself acknowledged that these tests made little scientific sense. The agents doing the monitoring were not qualified scientific observers.[50]

    ~end of Wikipedia quote~

    Whew…..

    Anyway, dear friend, as you know only too well, once you’ve been diagnosed CrAzY, if you start talking about CIA plots and experiments, most people begin to back away very SLOWLY. Except for the ones who flat out start screaming and turn tail and RUN. 🙂

    Yes, I would love to sue SOMEBODY. I don’t even know how I’ve survived my own life, truth be told. I think maybe my high IQ has helped a lot, and I think being born with above average looks has also helped. People, especially men, like to help pretty damsels in distress. But the flip side of that is there are a lot of predators who are looking to use and abuse and exploit pretty distressed women. Plus you have to deal with all the jealous insecure women who want Nothing To Do With You if you look too pretty… This latter category includes my own Narcissistic momster, who started telling me when I was 12 and she was dating that she could not wait for me to grow up and move out, because “no house is big enough for two women!”

    But, that is a whole other book-length comment, LOL. At least now that I am 61 I am safe from leering men, and jealous insecure women no longer factor much in my life. They aren’t entirely off the grid, however. There are still some plus-60s around who seem to get upset with me because my wrinkles don’t look quite as wrinkled as their wrinkles… SIGH.

    Love you!!!

  2. HOLY SHIT…i had no idea..that is totally and utterly disgusting…I AM appalled. just appalled. i was at Yale’s short terms unit for five months in 1971 but I would be very surprised if I found out that they had used such drugs on the unit I was on. VERY. They used mind control, yes, and they were very into behavioral control with verbal techniques and also psychot tropic drugs…But that is not exactly the same as secretly drugging you with LSD and calling you schizophrenic. HOLY SHIT! THOSE FUCKING ASSHOLES! Have you thought about suing? Yes, no doubt you have, and if you could and wanted to , I am sure you would…But I understand entirely the barriers. Nevertheless I am so furious on your behalf I can barely speak, I feel like Eminem “spitting his rage and shit” at the microphone because no one else will…But of course people listen to Eminem and NO ONE LISTENS TO US. We are the forgotten minority. and NO ONE GIVES A GODDAM SHIT. You know, Eminem can write lyrics about being “crazy” etc but he knows nothing, nothing, compared to what you and i and Kyra have been through and and and…Oh, I know, he has in fact been through a lot of shit, I know that, but…Oh what am I saying, Eminem could not write the lyrics he writes without having suffered mightily. So I take that back. It’s just that I don’t like it when he glorifies “crazy” as he has NO IDEA…not if he romanticizes it.

    Anyhow, I got off the subject, which was OUTRAGE at this detail of your long and horrible story…I dunno what else to say except that you continue to boggle my mind not just with the fact that you survived but that you found a way to FLOURISH. Flourish as in flora, flower, inflorescence…IN fact, You are like a beautiful rare orchid, (and most orchids are very hardy lovely flowers, not the frail hothouse things most people think they are.) which flowers sometimes with difficulty but once it does, may burst into an absolute cornucopia of blossoms that last for many months on the stem…with strength and a longevity that beats most others. You dig, my dear friend?

    Pam

  3. Brilliant, cogent, super ariticle, Pam. I agree, these drugs DAMAGE our brains. I am amazed by your deep, intelligent mind, despite all the years of chemical strait jacketing.

    Kyra. Oh…. Wow. Tricyclic antidepressants at age 5? Abilify “just to see what happens” at 16? You are a walking talking miracle.

    I was diagnosed with schizophrenia and put on Stellazine at age 14. My tongue started jumping around in my mouth and almost all of the skin peeled off of my face, so I was switched to Thorazine. Then at age 15, I was part of the LSD experiments they were doing to orphans and to young psychiatric patients in state institutions in the 1960s. I would never have known that I was being given LSD, if a compassionate nurse hadn’t taken pity on me.

    When I was on the LSD, I thought I was going “crazier.” Suddenly I seemed to see the molecules in things. Walls breathed, floors undulated, the air all around me was alive, breathing in and out. I was afraid to tell anyone what I was experiencing, for fear they would decide that my schizophrenia was getting worse and then I would never get out of the asylum. But I finally told one of the nurses, because the breathing, undulating world was so terrifying.

    Then she told me I was part of an experiment. “I could lose my job for telling you this,” she said, “so please don’t tell anyone I told you. But you are being given an experimental drug. The symptoms you describe are the same as the others I have seen who are also part of this LSD experiment.”

    I was released from the state hospital in December 1969, when I was 16 years old. I stopped taking psychotropic drugs at that time. because my family could not afford to buy the medications for me. Lucky for me. After a horrific period of withdrawal, I felt like my head was finally clear and my thinking was almost back to normal. But the LSD flashbacks continued for years. There were times when I would be driving my car and suddenly the highway would turn into an undulating sea of gray pavement molecules and I would have to pull off the road and wait for the world to become solid again.

    My husband, a Vietnam combat veteran with PTSD, was given Abilify a few years ago to “help with his depression.” Overnight he turned into a zombie-like shadow of himself. Scariest of all, he could not keep his tongue still. I got him off that drug immediately, thankfully before it was too late.

  4. good work here, Pam. Yeah, the whole idea is pretty misguided. But I keep seeing every day when I’m on here, that people will do anything to avoid any chance of seeing the reality of our mistreatment of each other, of course especially of kids.

  5. Ah Jeeze, Kyra, your story just pains and pains me…But that you keep going on despite it all, and by “it all” I mean EVERYTHING possible, means that you must be a life-seeker somehow, pls keep that in mind. You are a survivor, and somehow you did and will survive because that is your life’s drive, it must be, because you made it this far, despite it all. I agree that sometimes , when I read your story, I do not know how, but you did it, and that impresses all by itself…Good for you, just for that alone. BW Pam

  6. Yes–my “mental illness” at 16 was a combination of being a teenager and having a whole lot of trauma in my life. But no one bothered to look at that because it was quicker and easier and more profitable to medicate me.

    And at that point, I was mostly cooperative. I was hurting, and they told me they could make it stop as soon as they found the right medication. Obviously, that never worked, but I didn’t know that then. I believed them and did what they said because I had no way of knowing there was anything else. I mean, I was on tricyclic antidepressants when I was five years old, so I truly didn’t know anything different. I wanted them to cure me, to take the pain away, and I didn’t know then that when it didn’t work, they’d just give me more and more drugs and blame me for their failure.

  7. I believe that doctors are terribly remiss in prescribing AAPs, or APs at all, to teenagers. I’m sorry but I think this is a bad practice and very very dangerous. I know one young blogger got really mad at me for saying this, but being a teenager is so crazy-making in general that NO ONE really knows when something is a symptom of a larger problem and when it truly is “sturm und drang” angst of a reasonably expectable sort.

    The difficulty starts when you medicate every out-of-norm-appearing “symptom” — because things that teens experience are by definition out of the norm, and I believe that they should be permitted to experience these things without interference from neuro-toxic medications (including I might add, giving a kid Ritalin for supposed ADHD then adding AAPs, which the NYTimes just had an article about (as if it were even reasonable!)) Also, who is to say that this “norm” is even right or proper. Why do we teach kids that they should feel inadequate or wrong if they are different from some BORING and stupid NORM. Hasn’t anyone learned that the words Norm and Mediocre are functionally equivalent?

    Anyhow, not to take my wrath out on you, who never asked for it and don’t deserve it, god knows, but it is for 16 year olds like you that I get so angry, ON YOUR BEHALF… because you could not have known Abilify was neuro-toxic and while you personally probably knew what sort of drug it was, given your intelligence, why should you have to know or figure out at that age whether or not your doctor’s statement “to see what happens” makes any sense at all. (It didn’t .. he was experimenting on you!) What sort of thing is that to tell a 16 year old??

    I think it is not a statement of compassion…

    Anyhow, thank you so much for sharing your experience. That is the sort of response that I hoped for.

  8. I was prescribed Abilify years ago, shortly after it came out–in the words of my psychiatrist, “just to see what happens.”

    What happened was extreme confusion. I wandered around for at least a week unable to think. Apparently I kept telling people, “Something is wrong with me. You have to fix it.” When they’d ask what was wrong, I’d say, “I don’t know, but you have to fix it.” I’m usually very on top of understanding my meds and recognizing the cause of any weird new symptoms, but this time, it took over a week for me to connect the inability to think with the Abilify because, well, I couldn’t think.

    It also caused severe akathisia (I get this with almost every AAP) and muscle coordination problems so bad I couldn’t hold a pencil most of the time. For added fun, I was 16 years old, a junior in high school, when all this was happening.

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