Request for experience with reducing or getting off Zyprexa

Request for Experience with Reducing Zyprexa

To anyone with relevant experience:

My son had a terrifying psychosis in Aug 98. He was put on Loxapine, then Zyprexa and Zoloft. He took a year and a half to reduce to zero from 22.5 (per Breggin book) and got better and better. It was like a miracle the way his wonderful personality came back. He is completing his second year of art school and has been doing well, taking singing lessons, writing songs, socializing a bit. He was happy a lot.

Rather suddenly things started to disintegrate three months after totally quitting meds: he started getting messages of reference from the environment, thinking people didn't like him, being confused. He knew it was happening again and when he came home from school last Friday, May 4, he said he couldn't go back. Each day he was worse. After a 12 hour wait (Mon/Tues) the hospital refused him because he wasn't a danger and he didn't want to stay, and sent him home with a low dose (100 mg a day) of Seroquel because even though Olanzapine (Zyprexa) had worked well for him it had made him fat.

Now he is afraid to leave the house, sometimes suspicious of his family when things look weird to him. He asks why this is happening to him?

We supported him living without drugs, but now what? He follows my husband from room to room (we are both staying home from work), doesn't sleep a lot, won't go outside, clings to us, can't talk much or answer questions; he usually accomplishes a lot but now can't do much but sit. What is best? Indeed, what is possible?

Breggin says there is no organic cause of schiz but why then is my son's mind becoming scrambled? Can he get through this without drugs? Breggin says "yes" but no one tells how, just love, but we are giving him love. His psychologist (whom he sees twice weekly) and supported his drug reduction and says he has helped others become drug-free, thinks he should go on medication (again!) to get through this. The psych can't help him now because he can't go and talk suspicious even though they have had an excellent relationship for over 2 years). He also thinks he should go to hospital, but he doesn't want to. Lastly, what does anyone know about Zyprexa as opposed to Seroquol? Does Seroquol work well? As well as Zyprexa (olanzapine)?

Thank you,

<name omitted by request>

============ Follow-up Letter ===========

Dear everyone,

I am touched and amazed that people are interested in our problem and are discussing it. I am new to e-mail. I have received many suggestions about diet, other disease, self-esteem. I am reading them all and will respond. I am fairly occupied now with my son.

Thank you everyone.

It is very helpful to hear others' stories and opinions. It rings true to me that it is like my son is in another world and overwhelmed by that world and not knowing how to connect to this world, and it is a scary world, all the fears, primitive urges, feelings, terrifying images beliefs in magic and ghosts from our sub-conscious.

My son is not speaking for himself because at the moment he has no interest in doing so. He sat up one whole night, keeping his glasses on and shaking with fear because he felt someone was coming to punish him. To discuss his experiences is of no interest to him, he could barely say a word to us, as he was in the middle of living a terrifying event. One victory, he is not going to hospital, but after having worked for a year and a half to reduce the meds to zero (from 22.5) is taking 5 now. This is a disappointment to him and us but it he was unable to talk to his psychologist because he was too delusional and suspicious so with 5 or 7.5 he will be able to talk, I hope.

As yet, he won't leave the house. Does this sound familiar to anyone? He stopped the Seroquel and went back to olanzapine but that does not mean he is committed to it forever. He is calming down and hopefully will gain insight and understanding about what happens to him and will make his own decisions about when he wants to reduce again and if weird things start happening in the future then he will either reduce his stress or take small amounts of meds again.

I know they are not benign but we have not found anyone or a way to work with him in psychosis -- I know they do in a clinic in San Joaquin California but we are not there and don't have money to get there and I can't imagine how they do it, how do they take someone shaking with fear who is not processing anything very well and help him.

He will continue to see his psychologist, I hope, when he feels better. Now, he seems to be over his delusions but is very quiet, very depressed, very confused, and I think feels ashamed. How can we help, especially if he is now suspicious of his psychologist and art school classmates. (He was yesterday but I hope that passes.) He now feels humiliated, I think, and unwilling to face people. I understand because in a way I find it painful to face people at work and in our community theatre group. Then he is boxed in without a life.

With the meds if he can get past his suspicions he can talk now and get help figuring things out. Is there anyone out there or who you know who went through something like this, felt like this, and got over it? Do you now exist without the meds? The meds seem damaging but tell me how do people get a life without them. How do people gain insight without feeling humiliated because of the stigma of our culture against losing your mind?

<named omitted by request>

Additional information (click on links)

Getting off Meds - Response from Kimberly Denise.

Information on treatment without drugs, and getting off antipsychotics.

Information on withdrawal from SSRIs (antidepressants).

Discontinuation syndrome induced psychosis.

Sent: Friday, May 10, 2002 12:16 PM

Subject: reducing neuroleptics and acupuncture

Has anyone heard of using acupuncture when one is withdrawing from neuroleptics ? I know it's helped people stop smoking... wonder if it can help with reducing zyprexa.

thanks,

robert

Dear Robert,

I guess I'll send it to "all" as long as I have written it. Just from memory, I can say some of the things acupuncture does. It is calming, relaxing. It aligns the energy channels that go through the body so that you have more energy. I forget more. Just the other day, a woman said at the State Advisory Council (She was a county worker or professional, not a "consumer") that she found acupuncture beneficial for her headaches.

The State Mental Health and Mental Retardation director was there and had just given a glowing account of what we are gonna do. The lady with the headache wanted to know what she meant by holistic health and what are we going to start making available. I don't remember how she weaseled out of it but nothing concrete is forthcoming. Medical Assistance never pays for anything helpful; only for things that make people sicker.

My son got great benefit from acupuncture when he got home from a group home and was still taking the stupid drugs. He was nice and pleasant and talkative one day when we had to go back to see the psychiatrist because he needed to get more drugs. The psychiatrist knew I was decreasing his meds because I told him. When we walked in that day, he could see that my son was much better. He did not even greet me. He did not call me in for a few minutes. He called his supv. and he came over. They kept my son in a back room for an hour or so. I sat in the waiting room agitated but didn't dare go to the window and ask what happened. I was afraid somebody would have me locked up, a real fear. When he came out, he could barely walk. I had to show him how to go through a door. We walked down the street and I had to show him how to get into the elevator at the ramp. I had to open the car door for him and indicate for him to get in. He never talked again for three weeks. Even then, he only grunted and I could not differentiate between "no" and "yes."

That was on November 6, 1996. When I came home from NARPA, I had learned a lot. I told him he had my permission to cancel his next appointment and he didn't need to go back there again. He promptly went to the phone and cancelled. He hardly ever touches the phone, even to this day. I gradually decreased his dosages until he was off all meds in August, 1997. It took another year for him to get used to living without drugs.

That incident happened at the great University of Minnesota Clinic. Never go to a research hospital thinking they are better.

I don't talk about this much because the NAMI mommies always talk about their kids. However, I did get mad enough to tell this to a legislative committee a year ago. I had just started to talk. I was sitting at the table with the Senator who had introduced the bill. He interrupted me three times before I had got three words out. He kept saying, "She is not talking on the bill." I said, "Mr Chair, I am speaking on the bill and I haven't used up my two minutes yet." He indicated for me to continue talking. It must have taken me more than two minutes but nobody interrupted to tell me "time's up."

Louise Bouta

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