Monday, April 12, 2021

How Do I Stay Off Meds w/This Family Problem?

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    I think I just dodged a bullet.

    I have just spent exactly one year on 4 mg of Risperdal daily (2mg twice daily). I was diagnosed with schizophrenia in 2013. I have had 6 involuntary holds at psych hospitals. I am married with 3 children, ages 3, 6 and 10. It all started when pregnant with my 3yo. I began hearing voices in 2012 and thought it was God talking to me through the Holy Spirit (I am a devout Christian). I had a hallucination that Jesus was telling me to stab myself. I got very confused and used a mail key to scratch my chest and my scalp. Was a stay at home mom at the time and the kids saw lots of blood. Husband came home and saw it and called the authorities. The cuts were superficial and only required 2 band-aids and no stitches. I refused meds and the judge sided with me because I was pregnant. After the baby was born I wasn’t as fortunate in subsequent hospitalizations. My husband believed the psychiatrists and he has told me I’ll be on meds “forever.” Now my husband and I live in separate houses. He is doubling up with his aunt and uncle in their house (which started when he was unemployed) and got court-ordered custody of our 3 kids when I ran away in 2013 thinking God was calling me to Texas alone. I came back drugged and his condition was I had to stay on meds if I wanted to see the children. His aunt won’t let me move in there with them. For a long time he kept the pill bottle in his own possession and supervised me taking every dose because of how much I resisted it historically. He would even drive to my house to give me my night dose. I was embarrassed in front of my kids when he would say things in front of them like “how can you disagree with me on x? I think your meds aren’t working.”

    Prior to the last hospitalization I was making youtube videos with messages from God. Prophecy videos. I would quote verbatim everything the voice in my head said. My husband opposed this but I thought I was a prophet. One of my video series was saying “Senator Strom Thurmond is going to get kicked down the hill.” I interpreted this as meaning he’d get into a political scandal in Washington DC. After coming back from the last hospitalization in Dec 2014, I decided google Senator Strom Thurmond and discovered he died in 2003. This discovery was life-changing. It meant I was not a prophet and I decided for the very first time to ignore the voices in my head. This was helpful because I had run away from my family at the behest of the voices even while on Risperdal because the Risperdal didn’t keep the voices away 100%. Now, drugs or no drugs, I just ignore the voices. Funny because my psychiatrist always asks me how often I hear voices on my meds and tells me to just ignore what I hear. Even on the Risperdal, I heard voices 7 days a week, throughout the day. So if all I have to do is ignore them, why do I need the drug? I’m afraid to ask the doctor that, though.

    After a year of enforcing med compliance, my husband decided to let me have the pill bottle in my house instead of in his possession. Without telling him or my psychiatrist, I decided to taper. I just throw away a pill twice a day just in case he decides to count what’s in the bottle. In January 18, 2016 I went down to 2 mg per day. By the next day, I saw improvement. I didn’t feel like going to bed at 7:30pm like I always did before. I began reading again and talking to others again. I began singing along to the radio again. On Jan 30th I went to 0 mg. I had less akathisia the next day. The only withdrawal symptom I had was one day of being irritable with my children. It has been just over a month off the Risperdal and so much has changed.

    In early January, 2016 it was the one year anniversary of taking the Risperdal continually. I had been dealing with terrible akathisia for a year, but something new started appearing: my husband noticed my tongue protruding. It would thrust in and out against my upper teeth constantly. He said “that’s so unattractive!” I didn’t even notice myself doing it. I tried to stop, but my tongue wouldn’t stop moving. Then, teeth-clenching and swallowing constantly and rapid blinking and constantly biting my lower lip. I told my pdoc about this. Said I was very concerned about tardive dyskinesia. She told me to close my eyes and stick out my tongue at the same time for her. I did. My tongue stuck out. She said “That was AIMS. You don’t have TD. Don’t start getting paranoid about TD.” But she offered no explanation for what my husband had observed. I feel she minimized it. More research made me very concerned about this getting worse and brain damage resulting in things like Parkinsonism in the future.

    Now that I’m at 0mg for over a month, I feel free. I’m so glad the problems the Risperdal was causing was not permanent. But I’m afraid it could have been if I’d stayed on it longer.

    On the Risperdal, I had no motivation. I spent 16 hours a day in bed, covers over my head. I wanted to hide from the world. I stopped smiling at people who walked by. I couldn’t laugh at jokes. I have a degree in vocal music and I stopped singing. Music no longer gave me pleasure. I lacked confidence and never said a word when my husband attacked me verbally. I lacked original ideas. I spoke in a monotone voice. I dreaded the idea of working. I no longer enjoyed my own children. Couldn’t wait to go home alone. I faked all emotions just so I didn’t seem weird. I could only read a few pages of a book, then stopped due to losing interest and akathisia. Couldn’t hold still, which was embarrassing in public. Barely talked and couldn’t elaborate. Answered in few words. Hated sex–dreaded it. Painful. Lost hope. Suicidal ideation for first time in my life because I saw no way out of this terrible existence of mine. No joy or tears/sadness. Husband would call me a “zombie.”

    The Risperdal stopped my menstruation. This was the only desirable side effect. It meant husband and I could have sex without any birth control and I wouldn’t get pregnant. This held true the entire year I was on it. He comes over to my place once a month for sex and I had no fear of pregnancy.

    I February my husband almost decided to supervise my dosing again, but just decided he wants me to text him everytime I take my dose. Phew.

    I don’t like being dishonest, but I’m unemployable on Risperdal. Now for the past month I’ve had a new job as a Substitute Teacher. On the Risperdal I wouldn’t be able to handle the cognitive demands of teaching. Even now I still talk slower than I used to. But at least I can overcome that.

    Off my Risperdal, I’m laughing at jokes again. Yay! I feel normal. I genuinely enjoy my daily time with my kids. I can think of original things to say. I stay out of bed until reasonable times. I’m motivated to work. Can read lengthy passages in one sitting. All unusual movements have stopped. I have a quicker response time. Emotional animation is back in face and voice. I’m smiling at strangers again. I’m conversational with my husband again. I can think of come-backs when he insults me.

    I have got to keep my gains. My relationships are so much better now without the Risperdal. I plan to keep going to my pdoc appointments every 2 months and pretending I still have the akathisia, etc. Once, in an appointment, the doctor suggested adding a second med to control the akathisia. I replied “I don’t to take any more meds.” She misinterpreted this comment as me saying I wanted to go off all meds (which I wouldn’t tell her even though it’s true). She immediately replied: “If you do that you’ll end up in the hospital again. I’ll have the Peer Counselor talk to you.” I know I won’t end up in the hospital again because the only reason I did those things is because I thought I was bound to in order to obey God. If I know it’s not God’s voice, then I’m in control again. Which she should be able to figure out because I’ve had no episodes for a year even though she knows the Risperdal never stopped the voices. My husband is my only source of transportation, drives me to the appointments and expects me to keep going. Remember–I can’t see the kids if he finds out I stopped the meds. I’m trapped this way. I feel like I have to keep up the ruse for the sake of my kids. And my job, which I carpool to with my husband.

    I need advice about my husband. I can’t afford for him to find out about this. I’m afraid he’ll find out when he comes over once a month for sex. I have never refused him. High prolactin made me infertile on Risperdal. Now, I’ve noticed my cervical mucus changing in the past 3 days and I’m fertile right now. I’m so afraid he’ll come over for sex right now because of this. It’s been a month since his last time. There are two times when there’s risk. If he comes over when I’m fertile, how can I say “no” or say “use a condom?” He’ll know something’s up and probably suspect me. Or, what if he comes over for sex when I’m on my period? He’ll find out. He knows the drug stopped my periods for a year. So far, I haven’t had one yet. Don’t know if/when it will come back. I’m squeezing the milk from my nipples daily in hopes that the nipple stimulation will help keep my prolactin up. Maybe that will keep me infertile. But I don’t think that’s working because I’m seeing changes down below.

    I absolutely can’t have another baby when my husband and 3 children live in another house and we can barely support the 3 we have. He demands I hand over my entire paycheck or else I can’t see him and the kids. He’s still on public assistance. I can’t afford childcare. He keeps our joint-owned car at his place. He is verbally abusive. I have tried to figure out how to divorce him, but I don’t think I can afford it financially. If I got pregnant there would be a fight over meds during pregnancy. The baby would possibly be taken away from me and custody given to him. Substitute teachers don’t have any paid leave. A pregnancy absolutely cannot happen. I’m almost considering going back on the Risperdal because of this. Help!

    He expects me to get a full-time permanent teaching job with my teaching credential in order to rescue him and the 3 children financially and afford to have us move into a place of our own again together like we were before he lost his job in 2012 and I got kicked out of his aunt’s house due to “being mental.” He is a Substitute Teacher, too, and can’t afford housing in Southern California for our family size. He doesn’t have any better job prospects himself. He refuses to apply for low-income housing even though he hates living with his domineering aunt. He wants me to rescue him by getting a teaching job. I guarantee I can’t get a teaching job while on Risperdal. I don’t want to ever live with him again. He is a rageaholic and is verbally abusive to me and the 3 kids. I’m safer and happier living apart from him and it’s the only way to stay drug-free. I rent a room out of a house and that’s what I can afford. If I move back in w/him he’ll enforce med compliance. He’ll watch me take the pills again. I’ll have no escape.

    I’m afraid I won’t get custody of our 3 children if I divorce him because he’ll tell the judge about what I did during my episodes from 2012-2014. Even though I’m now the saner member of this family. The kids have been living with him at auntie’s house for 3 years. So the judge will probably let them keep the status quo. I no longer trust judges to see things my way. Mental health court did that. The kids see me daily for homework help, etc. I’ve been totally stable since 2014 and remain so now. When I tapered off, the voices stopped. Then they came back just a tiny bit. I hear 75% less voices now than I did while on the Risperdal!

    How do I keep my secret and keep my husband happy at the same time? The sex is a problem and his job expectations for me are a problem. I just want to be a substitute teacher even though a permanent teaching job pays more because if I move back in with my husband I’ll be forced to be a zombie again. And maybe worse. Right now I’m seeing my kids daily and I want it to stay that way. But I lose them and my transportation if he finds out. Also, I don’t want to be put on injection if my pdoc finds out. Divorce seems to be unaffordable, and I’m not even talking about the lawyer expense. Help! Thanks.


    if I move back in with my husband I’ll be forced to be a zombie again

    I don’t want to be put on injection if my pdoc finds out.

    What makes you think he would do that ?

    They need a court order to do that, you don’t have to even go see any doctor if you don’t want to.

    The Forced Drugging Defense Package developed by the Law Project for Psychiatric Rights for the MindFreedom Shield program.

    And this

    I really don’t know all this law stuff but I do know doctors and hospitals treat people who know their rights much better.

    I don’t like being dishonest

    The way psychiatry does business they don’t deserve honesty, if a thief asks how much money is in your pockets is it wrong to say I have no money if that’s not true ??? its self defense.

    Let us know how its going for you.


    What makes me think he’d do that?

    He has told me I can’t see the kids unless I am on meds. He will watch me take each dose if we’re under the same roof.
    I know I don’t HAVE to go to the doctor if I don’t want to. But my husband is controlling. He expects me to keep seeing the doc and taking the meds. No meds? No kids. I see the kids daily right now after school for homework help and dinner in restaurants and weekend time at the park, at church, etc. My husband has our one joint-owned family car and drives me to my doctor appointments. In fact, I have one tomorrow. I plan on going. Why? So I can see my kids. I can’t figure out how to have a relationship with my kids and stop going to the doctor at the same time. A family law attourney recommended I have a judge review his emergency temporary custody and file a motion to get visitation rights. But then I will probably only get every other weekend with them and my husband will no doubt stop driving me to work (out of spite). Every day time with the kids is better than every other weekend. How can I have my family life back again? I wish my husband could be convinced to let me stop taking the Risperdal. My secret is the best I can do right now. What’s hard is I’m paying lip service to “getting back together” with a full-time teaching job search to buy housing for our family of 5 in Southern California . . . but I really don’t want to start living with him again. Because he’ll expect me to take the Risperdal. Right now, I have only the rights that he gives me. If we divorce, what judge is going to look kindly on me? He’s had custody of the kids for 3 years. Probably the status quo would be maintained. I’m afraid this is as good as it gets for me. I just have to put up with his verbal abuse.

    Now that I’ve got my first paycheck for my Substitute Teaching job, my Medi-Cal is going to be cancelled. I have to show them my paystub this week. Then I’m forced into the position of paying for medical insurance for a drug I don’t even take, or paying the Obamacare fine for non-insured, and paying for the Risperdal out of pocket. To keep pretending I’m taking it. Husband may not be enforcing med compliance at this time, but he expects to see that pill bottle on my dresser when he comes over for sex once a month. Without it, I can say goodbye to my kids. I’m so frustrated. The pills are like $200 per bottle per month. Ouch.


    You can always say “no” to your husband re: sex. You don’t have to give him any reason at all but if you did? “I’m not in the mood – sorry” would suffice.

    Find some lollies that almost match the size of your meds and throw them in the bottle. Sounds childish but it just might work whilst you build up your strength.

    If there is no court order regarding your husband and children, he has NO right to prevent you seeing them.

    Good luck!


    As I see it: the voices in your head wouldn’t be a big problem if you wouldn’t listen to them. If you know these voices are not the voice of God, but of Satan or the CIA, you would not listen.

    Maybe one of the following inventions has been used to mess up your head:
    US patent 4877027 (1989)
    US patent 4858612 (1989)
    US patent 6052336 (2000)
    US Patent 6587729 (2003)


    The dyskinesia can be treated with manganese salts and/or niacin. You’d start with 5-8mg./day and work your way up to maybe 15mg./day.
    The niacin can also be used as an antipsychotic instead of the Risperdal, which means you’d start with 1g 3 times a day. Combine it with vit. C at the same rate (1gx3). Niacin has the side effect of inducing flushing (skin gets red and you feel a sensation like under the skin sunburn) which mostly goes away if you continue at the 3g/day level. You can avoid this by using niacinamide or inositol nicotinate (much more expensive than straight niacin), but I don’t know how these work for dyskinesia.
    The basic literature on the dyskinesia treatments comes from a paper by Richard Kunin, MD, in the old Journal of Orthomolecular Psychiatry back in the early 1980’s. Niacin in the treatment of the schiz. syndrome goes back 60 years- the above was the basic starting formula.


    Drugging Kids

    Louis Theroux – America’s Medicated Kids

    Do you think it right to stigmatize a child because he or she doesn’t look people in the eye or exchange greetings? Do you think it right to use that to justify their drugging?

    Do you think a therapist who focuses on these things as problems to be solved via treatment is engaging in child abuse? Psychological child abuse? Medical child abuse?

    Do you think this should result in a felony conviction and state prison time?

    Do you think the children featured in the above video are being used as family scapegoats?

    Do you think CPS and the Court should be involved?

    Do you think the parents should be convicted of felonies and imprisoned? Do you think that sort of penalty is sufficient?

    Do you think a therapist who tells children that they have to accept that their parents are loving and hence blameless, is engaging in child abuse? Felonious child abuse?

    How about a therapist who markets himself and his services by presenting this interpretation, along with lots of counter culture credentials. Do you think he is simply hiring himself out as an assistant abuser for the parents?

    Felony conviction and incarceration?

    Do you think the children shown in the above video are displaying traits which suggest that they have been, or are under, extreme stress, such as commonly found in wars and in concentration camps?

    Do you think CPS should be notified so that they can do a well being check, independent of any therapists hired by the parents?

    Do you think these situations are indicative of some sort of negative parent v child relationship?

    Who do you think should be examining this, therapists hired by the well off parents, or therapists appointed by the court and backed up by court authority?

    Do you think any of this should trigger the mandatory reporting laws, as now written, “suspected cases of child abuse or neglect”?

    If a therapist does not make the report, do you think they should be convicted of a felony and imprisoned.

    Do you think some private practice therapists decline to make the report because that would likely mean losing a paying client? Do you think it is an implicit understanding between the therapist and the parents that no such report will ever be filed, so long as they keep coming to sessions and keep paying?

    What do you think should be done with therapists who operate this way?

    Do you think that these parents are taking out their frustrations in life on their children?

    Do you think that the original reason they even had children was to give themselves a legitimated adult identity?

    Do you think the parents are not taking responsibilities for their own lives and not admitting that they have choices, and do you think their children are the victims of this?

    Do you think that Munchausen’s By Proxy is a good way of describing these situations, given that we understand now that we are not actually saying that the parent has a mental illness, but rather we are describing a common pattern of exaggerating and inducing behaviors in a child which will result doctors and therapists stepping in? Do you think this should result in a felony conviction and incarceration?

    What sort of a life can such a child have, when everyone is saying that they are the problem and that no one else is wrong other than themselves?

    Now I ask this of those who have specific experience in these realms, do the cases get reported to CPS? Does CPS act? What happens to the parents? What happens to the doctors and therapists who are accomplices? And to those who do not report?

    And so for everyone, are you willing to get involved and try to make sure that these cases result in felony convictions and civil judgments?

    Are you willing to make sure that there is intervention into families and that children have escape routes and alternate places to go and other people to connect with?

    Are you able to watch a video like the above without being enraged? If it was happening right in front of you, would you intercede? Would you act upon people involuntarily?


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