Schizophrenia.com

What to do


#1

I dont know what to do. The p doc decided since im really young this psychotic episode was stress related and he said to gradually stop taking my meds. This is my first day totally off. And its all coming back, everything is wobbling and breathing, the girrafee statue made a full bow with its neck and im getting paranoid thoughts. Happily the voices arent here yet so thats nice. Now since the first time it happened my mom is on the totall edge. I dont want to tell her this hell came back. I dont think shell be able to take it any more. Im horrified please help. Should i try to manage without meds? What do i do :frowning:


#2

Please tell your doctor and your mom. I know your mom is on edge, but it will be worse for all concerned if you try to keep this to yourself. It will probably get worse. Don`t do this alone…Good luck***


#3

what they told me to do is call your outpatient dr or nurse practicianer if I feel anything like that.


#4

i don’t take meds and i’m fine, i still have all the stuff in my head but i am not a wreck.
you can survive life without meds but it is a choice and a lot of hard work…
i just put up with everything i see and hear, to me it is like watching two t.v s’ at the same time merged together…
take care


#5

Go back to the doctor. It obviously is too soon. Tell him what is going on. You shouldn’t have to live in fear.


#6

Even if you do or don’t do meds, you really should let your Mom and the doc know that your having a hard time. They might suggest a therapy option or a host of other things that could help you feel on more stable ground.

Talk to someone so they know what is going on and can come up with options on how to help you. Why suffer needlessly?


#7

I would recommend telling your mom and doctor. It doesn’t sound like going completely off meds is a good idea right now. Perhaps a maintenance dose could be looked at.


#8

Well i told my mom and we both dont know what to do. I definetly dont want to go back to taking risperdal becouse at the end i grew sick of it, the very thought of taking it again just repulses me as if i were to take rat poison.
Happily for the second day apart from everything wobling and moving in diffrent ways and paranoid thoughts not much more is coming yet but my body is probobly full of risperdal in its system. Im scared of whats to come. Thank you all for the advice


#9

I’d say keep a journal of how you feel and what is going on and that way you can track what part is getting worse and what is getting better. If the voices are fading, but the paranoia is amping up you might do well with an anxiety med and not every thing else.

If the delusions are amping up and everything else is fading, you might do well with a therapist and no meds.

If everything is amping up, you might need meds but let your doc know that Risperdal is no working for you.

I always feel you don’t know what to do next if you can’t tell what you’ve done before. If that makes any sense.


#10

I think your psychiatrist is suggesting that for the best interest of you. It is normal to feel a little scared and a little paranoid. Going off med is not easy initially. Expect some discomfort. Those might be considered withdrawal symptoms from long term use of anti psychotics. It would get better. Ask yourself if you still find it bearable. I think it is more than normal your mother don’t know what to do. It might be helpful if she can chat with you a little bit everyday and feel if you are still in line and not going too funny in your thoughts. I mean losing touch with this reality. I think it would be nice if you keep away from triggers or past delusional thoughts. Find out some way to fill your days, something that help with emotional stability. I wish you can drink more water and allow yourself more sleep and rest. I hope this help.


I suggest you to read this article. A good read:

Do Antipsychotics Worsen Long-term Schizophrenia Outcomes? Martin Harrow Explores the Question.

Robert Whitaker
March 26, 2013

Martin Harrow and Thomas Jobe have a new article coming out in Schizophrenia Bulletin that I wish would be read by everyone in our society with an interest in mental health. Harrow and Jobe, who conducted the best study of long-term schizophrenia outcomes that has ever been done, do not present new data in this article, but rather discuss the central question raised by their research: Does long-term treatment of schizophrenia with antipsychotic medications facilitate recovery? Or does it hinder it?

This is a paper that needs to be widely known. I wish every psychiatrist in the country would read it, and I wish that it would be widely discussed in the media too.

Now, Harrow’s study produced findings that belied common wisdom.  He and Jobe followed schizophrenia patients for 20 years, and those who got off antipsychotics, as a group, had much better outcomes. Over the long term, they were much more likely to be recovered, much more likely to work; they were much less likely to be experiencing psychotic symptoms; and they had better cognitive function and they were much less anxious. So how can you square that finding with research showing that when patients are withdrawn from antipsychotic medications, they relapse at a much higher rate? That is the evidence for long-term use of antipsychotics, and here is what Harrow and Jobe write:  “We view the results from these discontinuation studies as involving a paradox.”

Within six to 10 months following discontinuation, they write, 25% to 55% of schizophrenia patients withdrawn from their medications relapse. But, they note, “relapse rates are considerably lower subsequently in discontinued schizophrenia patients who remain stable during these 6-10 months,” and that “patients with schizophrenia not on antipsychotics for a prolonged period do not show this tendency to relapse when they remain unmedicated.”

So the puzzle is this: Why is there such a high relapse rate in the immediate months following withdrawal, compared to the relapse rate when patients “remain unmedicated” after this initial discontinuation period?

The common perspective, they note, is that the high rate of relapse on discontinuation provides “evidence of the importance of antipsychotic medications in maintaining clinical stability by blocking dopamine receptors.” But there is another perspective to consider:

“From an alternative perspective, the reduction in relapses and low relapse rate, after 6-10 months, could indicate a medicine-generated psychosis in the first 6-10 months, which then recedes. Using this perspective, the first 6-10 month increase in relapses after withdrawal may be influenced by biological conditions generated by the previous continuous use of antipsychotics, with this interacting with schizophrenia patients’ underlying greater vulnerability to psychopathology. The discontinuation effect includes the potential of medication-generated buildup, prior to discontinuation, of supersensitive dopamine receptors, or the buildup of excess dopamine receptors, or supersensitive psychosis, as indicated by multiple studies by Seeman and others of dopamine-blocking agents using animal models.”

This is key. Harrow and Jobe are stating that the high relapse rate that occurs in the drug-withdrawal studies may be an artifact of the patients having been on the drugs in the first place. The drugs induce a dopamine supersensitivity, which puts the patients at high risk of a “medicine-generated psychosis” upon drug withdrawal. And if this is so, then the entire evidence base for long-term use is based on a delusion: mistaking the high relapse rate for a sign that the “disease” is returning, when in truth it is related to prior drug exposure.

Next, Harrow and Jobe ask, what happens if people remain continuously on the drugs? “Well designed studies of dopamine blocking agents using animal models provide strong evidence that ‘breakthrough supersensitivity during ongoing antipsychotic treatment undermines treatment efficacy,’ ” they write. In other words, even if people stay on the drugs, the drugs may stop working, and the reason is that the drugs make the patients more biologically vulnerable to psychosis.

This raises the next question: What do longitudinal studies tell us about outcomes for schizophrenia patients who, shortly after an acute episode, get off antipsychotics? These studies, they write,  “could suggest that, long-term, schizophrenia patients with less or no antipsychotic use after the acute phase may show better outcomes and more periods of recovery.”

In their own research they write, those who stayed continuously on antipsychotics over 15-year and 20-year periods experienced “considerable psychopathology and few sustained periods of recovery.”

While some continuously medicated patients had a low level of psychotic symptoms, for most patients so treated “the psychotic symptoms were frequent and, while not intense, were at least of moderate severity, usually with some disruption of functioning.” In contrast, the schizophrenia patients “who were untreated for many years showed significantly better outcomes than those on antipsychotics.”

Now, when Harrow and Jobe reported their 15-year outcomes, Harrow and Jobe noted that it was the good prognosis patients who were most likely to go off, and so many readers took that as the explanation for the better outcomes for those who got off the drugs: the difference in outcomes could be explained by a difference in prognostic status.  But in their 15-year paper, Harrow and Jobe also observed that the good prognosis patients who got off antipsychotics did better than the good prognosis patients who stayed on, and that the bad prognosis patients who got off the drugs did better than those who stayed on. And in their new paper, in the Schizophrenia Bulletin, they directly address this fact:

“Many patients who left treatment for multiyear periods and had favorable outcomes were good prognostic schizophrenia patients, giving some confirmation to earlier views about the importance of prognostic factors. However, some patients treated for many years with antipsychotics also were good prognostic patients who did not show favorable outcomes.”

Furthermore, they note, other longitudinal studies have “found similar results.” They cite studies by Courtney Harding, the Chestnut Lodge study, the Alberta Hospital Studies in Canada, and those of M. Bleuler in Europe. Finally, Harrow and Jobe note that in the studies by the World Health Organization,
researchers “found better outcomes in many developing countries where only a small percentage of schizophrenia patients were treated with antipsychotics.”

Thus, in this review, they sum up the big puzzle regarding the evidence base for antipsychotics. Do they show efficacy over the short term? Yes. Do patients withdrawn from the drugs relapse at higher rates
than those maintained on the medications? Yes. But is there evidence that over the long term, the drugs may worsen outcomes? Yes.

“How unique among medical treatments is it that the apparent efficacy of antipsychotics could diminish over time or become ineffective or harmful?” they write. “There are many examples for other medications of similar long-term effects, with this often occurring as the body readjusts, biologically, to the medications.”

The conclusion they draw is a straightforward one: our current paradigm for treating schizophrenia, which emphasizes continual lifelong use of antipsychotics, needs to be fundamentally rethought.

“Overall, the longitudinal studies cited do not provide conclusive proof of a causal relationship between being off medications and being psychosis free. They do clearly indicate that not all schizophrenia
patients need continuous antipsychotics for a prolonged period, providing extensive evidence of samples of medication-free schizophrenia patients with favorable outcomes
. . . The longitudinal studies
indicate the importance of further research on how many schizophrenia patients profit from continuous administration of antipsychotics over a prolonged period, what factors identify and separate schizophrenia
patients who do not need prolonged antipsychotic treatment, and whether or not prolonged use of antipsychotics is harmful for some or many patients.”

This is a manifesto for change, and much to my amazement, it will be published in the Schizophrenia Bulletin.

This is a mainstream journal, and its editors surely wouldn’t publish this discussion unless they knew that the scientific evidence warranted it.

This is a hopeful moment, and an opportunity to be seized. I would urge Madinamerica readers to help seize that opportunity. We can ask those who prescribe antipsychotics and providers of service to read this article in Schizophrenia Bulletin and consider its implications. I hope that E. Fuller Torrey will read it, and that other prominent defenders of the common wisdom will read it too. I hope that Thomas Insel, director of the National Institute of Mental Health, will lead it and blog about it. In this way, perhaps this article can trigger a serious discussion, within mainstream psychiatry, about the wealth of evidence showing that our current paradigm of care, regarding the use of antipsychotics, needs to be fundamentally rethought. And that it needs to be rethought with this question in mind: we need to assess, as Harrow and Jobe wrote, whether “prolonged use of antipsychotics is harmful for some or many patients.”
That is a societal discussion we have needed to have for a long, long time.


#11

Thanks guys, i think ill start the journal although not right now, im too tired of all of this.
Another problem came up. For some reason im scared to go to sleep. There is not one reason for it, one day i was scared im going to harm myself while asleep, the other it was spiders crawling on me, anyway sleeping terriefies me. I stay up untill i pass out of tiredness but i cant continue this much longer. My mom is reacting really bad to everything im telling her. She cant believe this is true and blames me for making this up to stress her, so im scared to tell her about the sleep paranoia. This situation sucks. And i thought im going to get off the meds and all will be gone.
Sorry for venting but i have no one to talk to about all this.


#12

i asked my nurse practicianer what to do when people freak out, she said to say “it is hot helpful to …” and remain very calm.

I had to practice that alot in her office saying, “it is not helpful when you …” because instad I was like you, frustrated, and things keep spirialing out of control

and the she (nurse practicianer) recommended that I take people not helping, like you do need your Mom’s help, take your Mom with you into your next appointment.


#13

Shes with me on every appointment. I think its hard for her to understand what i am experiencing and i cant hold it against her. It just makes me so sad and feeling awful that i make her feel worse than she allready is. She is diagnosed with depresion.


#14

Please don’t be sorry for venting, that is a part of what this forum is for. discussion and support. I hope things go smoother for you soon.


#15

I understand what u mean. This week I can’t sleep too. This is the fifth consecutive night I can’t sleep. I find myself unable to fall asleep when there is stress. Small changes are hard on me. U are going through some stressful change. It takes time but you will manage it well.

If I don’t do well, my mom reacts in some ways too. It sucks I know. Keep writing here.


#16

Happily yesterday evening she asked me how i feel and whats going on. I told her everything and she didnt react bad. Went to sleep easier cause she let me sleep in the same room so i felt safer. I wish all this ■■■■ in my head just went away :frowning:


#17

Big hug! Wish u could have some more sleep tonight!


#18

Well my mom devided she wont sleep by me anymore becouse i move to much while asleep and wake her up all the time. Atleast i got one night of rest.

The visual halluvcnations are getting worse. Ive seen numbers apearing on buildings and for a second i felt like mason in call of duty black ops if anyone played that. Basicly the voices, which unfirtunetly came back started shouting and asking me what do the numbers mean.

My head playground is getting worse everyday :confused:


#19

Magnesium helps us fall asleep and remains asleep. It’s calming emotionally. Would u like to try some magnesium glycinate before bedtime?


#20

If itll help ill try it. I have to get back home first though