Category Archives: Abilify

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?

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.

 

Natchaug Hospital Stay #2 and Update with Picture

Just wanted to update you on where I have been and how I am: I  spent 6 weeks at Natchaug Hospital in Willimantic, Connecticut this past July and August and though I was discharged as much improved, I  am still having a difficult time, both readjusting and well, simply having a hard time of it. Although in the hospital they did a little adjusting of meds, increasing both the Geodon and the Zoloft, I am not convinced that either one made much of a difference nor that it did less harm and more good on balance. In any event, Dr C and I (at my request) soon eliminated the 25mg increase in Zoloft, and are now dropping the 80mg increase in Geodon. She is concerned that the 240mg is making me very irritable and more upset and frantic rather than providing enough relief  to make it worthwhile. Yes, the voices are much improved, but that could be the passage of time and perhaps due to a general decrease in paranoia, who knows? All I can say is that I cannot take this general state of overwrought irascibility, a tendency to snap at anyone who “looks at me crosseyed,” as my mother used to say.

Natchaug Hospital remains a very good place, the best I know, and just as I remembered, not least because they have a philosophy of kindness and compassion towards patients. In fact, they are excellent because they have a philosophy and are not simply flying by the seat of their pants, hiring whoever comes along needing a job, burned out or not. Not only is their philosophy based on compassion and not on controlling the patient, but they see no point in rules for the sake of rules. It is clear that if there is something in the unit set-up that doesn’t serve a particular patient, the Natchaug staff will bend it as far as they can and try to accommodate each patient’s particular needs. As I was frequently told, why make someone miserable when you can make them happy? It is difficult to be happy in a psychiatric unit, and many patients are miserable because of their illnesses, but not once did I ever see a staff member add to that misery willfully and certainly not to mine. (I frankly could not say this of two Connecticut area hospitals, one in Manchester and the other in Middletown.)

One thing that makes many patients happy at Natchaug, by the way, is that caffeinated coffee is provided at breakfast, a rare blessing in in-patient psychiatric settings.  And since everything is served cafeteria style, so you can have all you want.

They used to provide hot decaf coffee on the unit itself, which was a treat. Because one very ill patient tossed a cup of coffee at a staff member, however, and she was injured, and because for some reason they decided that that patient could not be restricted individually from having hot coffee, now no one is permitted hot drinks on the unit at all. Yet, I suspect that even he would have not thought it unfair to be kept from the coffee pot! I know that in other hospitals I have had restrictions placed on me that others have not, and no one thought it wrong or unfair to me…Anyhow, I dunno what to think, but it was their policy, a misguided one, perhaps, but who am I to say? I know everyone went nuts for a while about having to drink lukewarm “swill.” Finally, though, the patients simply gave up on the “coffee” machine and did without. Anyhow, I have to admit that when I first saw the hot coffee machine, I couldn’t believe it, not because I was thrilled — though I was — but because I saw an “accident”or worse already in the making…

Note: one of the few hard and fast rules  at Natchaug is one they cannot change because they will lose accreditation: no smoking. Smoking is simply not allowed, not even on hospital grounds. While certain patients have tantrums about this and might cause an uproar from time to time in order to try to force the staff to allow them to use the courtyard to smoke “just one cigarette, just this once, please, I am absolutely desperate!” it is simply not possible. But people are allowed the patch and gum and every effort is made to help smokers quit. Even though some staff acknowledge that the policy is unfortunate, even unfair, nothing can be done about it.

I was not, however, comfortable for most of my stay there, and was paranoid a great deal of the time. Of course, I did not understand that the staff was aware of this, so when I began to come out of my delusions of persecution, it surprised me mightily to discover that they knew that paranoia was the reason for my hostility all along. Nevertheless, up to the very day I was discharged, I was hearing people talk about me up and down the hall and at the nurses’ station.

Well, that is all I am going to write for today because I am, as of  a week ago, in the middle of writing my new memoir, and as the days progress I plan to put parts of it up here, for comments and for suggestions. Feel free to do both!

I will finish here with one of my latest drawings, which represents how I felt when I was restrained at Middlesex Hospital, both the time I described in a recent blog post, and the other(s) (for which I have amnesia) when Josephine told me I was more or less “out of control”…to which I can only respond: Violence begets violence, and perhaps if they had not perpetrated on me what they did, things might not have gotten out of hand, But then, that hospital is one that is guided by the Control for Control’s Sake philosophy and the nurses were bitter and angry people…Needlesstosay, they hated me if only because I refused to roll over and play dead, if not die.

Forthwith the picture.

Pam as Dead Meat: Let's Eat!