My mother was put on Risperdal a while back and suddenly started having involuntary movements of the mouth. She sits and gasps (sounds like she is gasping for air at times) and her tongue sounds dry and heavy. She is becoming increasingly embarrassed about this and is no longer interested in having a social life. She has just started becoming more healthy and seems to be happier overall, moving more and even started cooking again. But the mouth movements seem to be getting worse and she is becoming less willing to be amongst people.

We (my siblings and I) have tried numerous times to speak with her doctors about this, but they seem to think that she has some form of rheumatism. We have just changed doctors for her because she needed someone closer to her house, so she does not want to change doctors again, understandably.

There is no known cure for tardive dyskinesia, but I would like for the doctors to at least validate our concerns and do some testing on her. I am in tears every time i see my mother struggling with her speech and trying to act as if she isn't exhausted from her involuntary movements.

I hope to get some advice as to support groups to join, how to speak to her doctors, or anything else that anyone has experience with. I just want my mother to enjoy being around people again.
Thank you.

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Thank you goodenergy for sharing your experiences with me.

My mother was never officially diagnosed with schizophrenia, she all of a sudden started acting very different while going through chemotherapy. She would suddenly wake up in the middle of the night screaming and disoriented. She was convinced someone was trying to kill her or trying to take pictures of her when she was unclothed. It later got persistently worse and she would start seeing these small characters all around her, mocking her, taking pictures of her, and preventing her from eating, sleeping, and showering. They would put things in her food, take pictures of her when she was trying to take a shower, and hit her over the head when she tried to sleep.
She began to be fearful that these characters would hurt us, her children, and they would tell her things and throw water on her to agitate her and to show her that she was not in control.

We took her to her doctor and he said that she needed to be on Risperdal. My mother was very hesitant to go see a doctor at all, so we had to trick her to get her there, and she refused to go see a psychiatrist because she was afraid they would laugh at her or think that she was "crazy". The best we could do was to get her in with a doctor. The doctor said that the medication would take away these symptoms, but we (the family) did not look at the side effects closely at the time.

After the first 8-10 weeks on Risperdal, the issues she was having started fading away, she seemed very depressed, but she was sleeping properly for the first time in probably a few years. She also started agreeing to go to the doctor for other health issues. What I remember is that she started chewing her food very loudly around the time she started taking the medication, about a year in, we lost our father (her husband of 45 years) and about 6 months after that, her mouth movements started getting worse. Her tongue movement and smacking got even worse when she started getting off the Risperdal. She is getting worse daily, she is now rolling her eyes, shifting her feet and biting her tongue daily. She has been taken off the Risperdal now completely.

She was put on Biperiden to counteract the initial mouth movements, but this is obviously not helping at all. We are trying to get her Dr to get her off this, and she is seeing a neurologist next week to get more information on more options. Like I said before, we are just starting to see our mom again. She is much more engaging and is doing well in other aspects of her life. But I do fear that the TD will get her down again because she is extremely self-conscious about her appearance because of the mouth and eye movements. She spends all her energy trying to control these movements and it breaks my heart.

I am frustrated with the drs because I feel like they are not listening to us. We are also avid internet researchers, and we always go in to a visit with her, a list over questions, and possible treatments for her issues. She is hesitant towards changing doctors when we asked her last. She does not trust many people, and so we want her to be comfortable with who she is seeing. We will keep pushing her doctor, and we will continue to advocate for her every single day.

I am not actually living close to my mother, so my siblings and I try to talk daily and make sure that we are all on the same page when it comes to what we should do, share research, and keep each other informed.

I am looking into getting her a mouth guard and some mouth wash to ease her tongue soreness and her biting. Do you have any experience with this?

I would love to talk to you some more, maybe we can together work on finding a cure for our dear mothers.
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This is my experience: I will not give up until I find a treatment that works for my mom. In my experience, the docs prescribe drugs for conditions my mother does not have and then give her more drugs for the side effects. This causes more problems. I am constantly researching and requesting she be taken off drugs. I am constantly doing research, which is easy to do on the Internet.

I was uncomfortable with this at first -- after all, I am not a doctor. But the more I did it, the more I began to see that I was onto something important, and that this kind of advocacy is the best I can do for my mom. In fact, she would definitely be very, very ill with a lot of uncomfortable and dangerous symptoms if she were taking all the drugs the doctors keep trying to put her on.

Is you mother schizophrenic or bipolar? If not, why was she put on Risperdal? I ask this because my mother has been put on drugs for things she does not actually have (though she might have similar symptoms actually indicating another condition), and the doctors and staff think this is fine medical care.

How long has she been off the Risperdal? Did it really start just when she started taking the drug?? If so, I would suggest that you do not let them talk you out of remembering this! If your doctor denies this and does not admit the below information is true, then be advised how much you can trust him or her. I have learned to do my best to be open to the doctor's expert information WITH HEALTHY SKEPTICISM, and to never dismiss my own reality. I keep asking questions and stating research information to them until I am satisfied. In my experience, this is a constant, ongoing process.

This is what the National Alliance on Mental Illness has to say:

Tardive dyskinesia is a movement disorder that may develop months, years and even decades after taking antipsychotic medication.

The most effective treatment for TD is prevention. A person taking medications should see their psychiatrist for regular evaluations to ensure that any signs of TD are recognized before they become severe. Most psychiatrists will use a standardized rating scale called "The Abnormal Involuntary Movement Scale"—AIMS for short—to screen for TD at least once each year.

Decreasing the dose of one’s antipsychotic medications can also help reduce the severity of symptoms. If this is not possible or does not relieve the symptoms of TD, some psychiatrists may recommend switching from one medication to a different one.

Unfortunately there is no medication that can cure TD. A number of different medications have been studied, including benzodiazepines and supplements, such as Vitamin E, branched chain amino acids, Gingko Biloba, but it remains unclear whether any of them can prevent or treat TD at the current time. The antipsychotic clozapine has been effective in selected cases of TD.
- See more at: nami
In my experience, if I continue to research, I will be able to find some kind of solution that will cure or manage my mother's condition -- although the doctor will probably never consider it if it is not a pill marketed by a major drug company.

I am not a closed minded or didactic person -- I was a journalist for decades, I am always open to the facts. I have come to my very low opinion of doctors only through hard and repeated experience of caring for myself and my mom and trying to find real solutions.
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I'm sorry you and your family have to go through this. It doesn't sound like there are any good answers for you. Hugs...
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Thank you biannie. I should have mentioned that she has been taken off the Risperdal as of a couple of months ago and the symptoms have not lessened. She was put on a medication that would 'counteract' the side effects, but they did not work. I hoped that taking her off the medication would stop the side effects, but that did not happen. I see that there is no cure for this, but some experimental treatments which do not sound like something I want to put her through (very severe side effects).

I will talk to my sisters about possibly changing doctors, but I do not think that is a possibility right now.
Thank you again
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Well it sounds like tardive dyskinesia is a known side effect of Risperdal, so the fact that your mom is reacting that way shouldn't be a total shock to her doctors. They may not be taking action because it sounds like the medication is working well for your mom other than the involuntary movement (which is no small thing). I guess you have to decide which is more valuable - the benefits of the drug or the negative side effects.

In reading about it, it looks like it not might be reversible, but if it was my mom, I might see if we could take her off of it for a period of time, to see if the movement stops. If it does, you know it was the medicine. But then you've got mom back to her pre-medicated condition, whatever that was like. You could also ask them to try another medication, but it looks like other medications in the same class have the same side effects, because of where in the brain they're working. A lot of doctors downplay any side effects, it's just how they react. Unfortunately.

You could also change doctors, but I don't know if that's possible.
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