Schizophrenia and movement disorders

Lisaben,

I do not have schizophrenia but do have bipolar I. I take Invega which is in the same class of drugs, the atypical antipsychotics. Some of the newer ones, have fewer such side effects.

I do have similar movements, and my doctor put me on Cogentin for it. It helps but does not 100% eliminate them. In my case, the movements are in my feet and hands (mostly feet), occasionally the face. I also have some restlessness. I would say it's 80-90% improved. It's important for him to talk to his doctor.

I feel for you. Ability isn't supposed to ha e as many side effects. Seems there is no knowing. We are trying engrezza but have not started yet. I will let you k ow if I notice a positive difference.

Hello @lisaben, Welcome to Connect. I just want to let you know that you are not alone. Our son was also diagnosed with schizophrenia in his early teens and spent over a year in the hospital and when they gave up on him, he spent six months in a state hospital where the goal was to help him learn to live with his condition along with the medications. He's now in his mid 50's and doing really well but the first 10 years were tough on him and my wife and I. What really helped was finding a local support group associated with the National Alliance on Mental Illness (NAMI). They have some good information you might find helpful along with a search tool to locate a local support group here - https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Schizophrenia/Support.

I think the best thing that helped our son was being able to manage his medications so that he is able to function and keep a job. Early on it was difficult for me because I don't think I understood how important it was for me to respond calmly when he was having difficulty. It was extremely helpful to have a local support group with other parents in the same situation and being able to share experiences. Over the years his diagnosis was changed to manic depression and his doctors tried several medications until finding one that worked the best for him.

Do you have a local support group in your area?

Hi John
After years of Abilify his involuntary movements have increased. As your son, mine as well tries to hide these movements.
We were just told that Abilify is to have the least side affects.
It was suggested that he take a prescription that might keep theses movements in “check”
He reads up on all scripts and will not take anymore medication.
Botox has been suggested.
Is anyone familiar with Botox to reduce movements.
Thank you

Hi @hopeful1953, I don't have any experience with Botox but there is evidence that it can help. Here's some information I found that might be helpful:

-- Botox™ for Movement Disorders:
https://www.neurologysolutions.com/approach-and-treatments/botox/
-- Botulinum Toxin in Movement Disorders: An Update:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7827923/

The condition is known as tardive dyskinesia and is a common side-effect of the use of antipsychotic medications such as the one your son is currently taking. This is not a well-understood side effect and affects patients in s variety of ways as well as levels of intensity. These are involuntary spasms which include symptoms like your son's. This should be brought to the attention of his therapist as soon as possible. An alternative antipsychotic may help and medications have been and are being developed to counteract these disturbing physical symptoms. Other symptoms can include licking the lips, the tongue darting in and out, unusual blinking and even verbal shouts or noises of short duration. This can easily affect your son's self-confidence as people around him can find these symptoms frightening and authority figures such as police officers may misinterpret these involuntary symptoms as rudeness, or 'street drug' induced. So it is best to seek medical advice as soon as possible. At present, there is no 'cure' for this, and it may be permanent even if the anti-psychotic treatment is interrupted or a substitute drug is employed. People on long-term SSRI and SSNI medications for depression are also occasionally being discovered with the development of this disturbing physical issue. The good news is that with the sweeping advancements in genetics, new and more efficacious treatments are coming forward every day. It is the social consequences which can make this condition potentially dangerous through the overreaction of a member of the public or police. Until some resolution is found working with your doctor, it might be wise for your son to carry a doctor's note in his wallet or some kind of medical bracelet, that would indicate that he has a 'neurological' condition that causes involuntary body movement or facial expressions that are entirely benign, carry no danger to others and are not under his control. CAUTION: This condition does not develop in everyone using antipsychotic medications or some types of anti-depressants. NEVER abruptly discontinue the use of your medication or that of the person for whom you are caring. This could be very dangerous. Seek medical advice before stopping any prescribed medication.

The condition is known as tardive dyskinesia and is a common side-effect of the use of antipsychotic medications such as the one your son is currently taking. This is not a well-understood side effect and affects patients in s variety of ways as well as levels of intensity. These are involuntary spasms which include symptoms like your son's. This should be brought to the attention of his therapist as soon as possible. An alternative antipsychotic may help and medications have been and are being developed to counteract these disturbing physical symptoms. Other symptoms can include licking the lips, the tongue darting in and out, unusual blinking and even verbal shouts or noises of short duration. This can easily affect your son's self-confidence as people around him can find these symptoms frightening and authority figures such as police officers may misinterpret these involuntary symptoms as rudeness, or 'street drug' induced. So it is best to seek medical advice as soon as possible. At present, there is no 'cure' for this, and it may be permanent even if the anti-psychotic treatment is interrupted or a substitute drug is employed. People on long-term SSRI and SSNI medications for depression are also occasionally being discovered with the development of this disturbing physical issue. The good news is that with the sweeping advancements in genetics, new and more efficacious treatments are coming forward every day. It is the social consequences which can make this condition potentially dangerous through the overreaction of a member of the public or police. Until some resolution is found working with your doctor, it might be wise for your son to carry a doctor's note in his wallet or some kind of medical bracelet, that would indicate that he has a 'neurological' condition that causes involuntary body movement or facial expressions that are entirely benign, carry no danger to others and are not under his control. CAUTION: This condition does not develop in everyone using antipsychotic medications or some types of anti-depressants. NEVER abruptly discontinue the use of your medication or that of the person for whom you are caring. This could be very dangerous. Seek medical advice before stopping any prescribed medication.