Hi, new to the forum…Son is 27…he is on 12-15 mg Invega which I think is way too much ( he is 5 foot 8 and only 145 pounds)…He says voices are always with him. Do I try to find activities to ‘distract’ the voices ? Do I tell him to wait them out ?..any advice will be appreciated greatly…I hate to see him on such high dose of drugs which causes tremors and spasms at night
My 17 year old daughter talks about the voices too, often telling her that she is no good and she is gross, so I am also interested in the replies that you get on this.
and what strategies do you as a parent, employ if any ?
are you saying that he is on Invega-sustena shot.
Invega shot goes like: 39mg, 78mg,117mg (mainatenance), 156mg and 234mg
may be your son is on Oral pills Paleriperdone. the maximun is 12mg.
does he take any other medicine Like Benztropine 0.5mg which is it will help to treat to treat tremor caused by for side effects of antipsychotic medications
or may be Gabapin 300Mg to treat treat neuropathic pain and legs syndrome( RLS)
talk to his doctor about medicine for side effects
Also ask him to reduce the dose by 1mg if possible if he is taking oral pills.
Clozarine is the best medicine to take away voices according to many on this site.
I have been reading up on the DX’d side of the forums to get effective coping techniques from those who struggle with symptoms sometimes.
For hallucinations and voices, the most frequently recommended way to manage have been (in order):
- Avoid entertaining or interacting with hallucinations.
- Find activities that are simple and keep the person engaged.
- Avoid understimulation (lack of activity and involvement).
- Avoid overstimulation (too much activity and involvement).
There is a delicate balance for stimulation.
Too much can cause “shutting off”, or the person starting to feel worn out and annoyed / anxious. That leads to stress
Too little and the hallucinations seem overwhelming, also leading to stress.
There are a lot of people with Schizophrenia who have frequent hallucinations. Practicing managing the level of stimulation from music, company, games, or activities (like cooking, tv, shopping, yard work, cleaning) can help quiet hallucinations and help place the person better in “the here and now”.
It takes practice.
From what I understand, medication, family involvement, working with the primary doc and therapy, and using stimulation as a tool seems to be a really effective way to place hallucinations in the background so that the DX’d person can work on enjoying their day-to-day.
Shug, my son is on the maximum dosage of Invega Sustenna (234 mg) and he still hears voices on a daily basis. Some days are worse than others, probably due to the illness cycling or increased stress. Fortunately, my son doesn’t experience tremors.
Maybe a med change is needed, if your son is willing? Mine isn’t, so he’ll just have to learn how to deal. Clozaril would be our go to. Tried, but son refused.
The management ideas @wreklus got from the other forum sound accurate based on what I’ve seen.
Our daughter was on the Invega Sustenna injection at the 234mg maximum dose level for approx. a year. We then slowly dropped down two dosage levels to 117mg. It has been wonderful. She is employed full time. It took a minimum of 5 months at the max dose to begin to eliminate symptoms and slowly erase the Anosognosia. We found oral drugs to be completely insufficient to deal with such a serious disorder.
Personally your son is not on a dosage sufficient to get control of his symptoms. Just my two cents. Our daughter was of the same age as your son. How do you monitor that your son is taking his medication? Even in a healthcare situation patients can fool medical staff into thinking they are swallowing their meds or not throwing them up.
For those of you who have someone on Invega Sustenna, how quickly was the drug administered and where in the course of the disorder was the drug administered? In our case Invega Sustenna was administered during the second psychotic episode 7 months after the first. The first they tried oral medication and since we didn’t have guardianship she stopped. By second hospitalization we had guardianship and it’s been Invega Sustenna since. We’ve passed the two year mark.
@NeverTooLate. My son started the Invega shot (117mg) during hospitalization last May. (almost two years after his first episode - which seemed to continue until hospitalization). After a few months he was clear enough to land a job. He keeps getting more clear. He still has no insight. Any advice on helping him with that. He has to take the shot until next Oct and says he will go off.
Do you have guardianship? If not try to get it. If it were my child, I believe his dosage level is not high enough and I would ask the doctor to increase dosage. 117mg is just a suggested maintenance dose and that is from the drug company and their research. To me a maintance dose is something to go with AFTER symptoms have been reduced or eliminated. I don’t believe an initial dosage of 117mg would have helped our daughter since it took 5 months to start working at the max dose. She was at max dosage for a year. Only after that year and continued improvement did we start reducing her medication. She has insight currently. She obviously doesn’t like the shot or the medication because of the weight gain…but she also does not change her diet to fit her eating style (volume) nor does she exercise regularly. If he goes off his meds…not only will his symptoms return, but the next time medication is administered the odds are that seeing positive results will be reduced.
Does your son smoke?
NeverTooLate, unfortunately, many people with schizophrenia are med-resistant (treatment-refractory). It doesn’t matter what med, what dosage, or how long they are in treatment. For many, meds just don’t work. It’s a tragedy.
You’re so very fortunate your daughter is one of the lucky ones.
While I am no expert, I have seen much and interacted with many. The conclusions we have arrived at is - The longer a person goes undiagnosed and untreated the more damage is occurring in the brain, the more medicated is stopped and started the less opportunity to see results specific to the medication and solid conclusions drawn, constant medication changes because quick results are not being achieved is the worst kind of research let alone actually doing it to patients. Prescribing so many drugs at any given time is no way to go about treating any illness let alone the brain (it’s like throwing everything at a wall and seeing what sticks and not know why something is sticking). We have encountered the poorest of excuses for psychiatrists (they should have their license revoked), poor therapists, etc. As much as you want to state as fact that many people are “med-resistant” (and some may be), I believe they arrived at that status by the above mentioned scenarios just to list a few…especially those that were not initially treated with second generation anti-psychotics at onset.
NeverTooLate, our 22 year old son didn’t arrive at the status of being med-resistant by any of the scenarios you mentioned. Sadly, he was just super unlucky. Our whole family was.
Our son is on 15 mg Invega (, oral _ which is more than the maximum dose of 12 mg…Causes spasms at night …for last week has dropped down to 12 mg………He now lives with us so that we can take care of him…He is pleasant but can get anxious if there is a lot of people about…I think we are resigned that he will have voices the rest of his life…I am just not too sure what I am supposed to do when they get to much for him…eg. we are riding out bike through the woods and after 90 minutes he will claim " I hear voices",when he says thst, it means they are more active than normal…I tell him, " ok, let’s wait them out and hopefully the go away soon"
First off, I’m so happy to hear that your son will take on such challenges as riding bikes through woods. I hope that lasts for your son. As my son’s illness has progressed, he has lost his motivation for all the physical activities he used to love to do.
Secondly, I think your response to your son (acknowledging his voices and then providing him with accommodations) is meeting him where he’s at. It sounds like you are maintaining an honest and compassionate relationship. That’s huge for a caregiver.
As for the voices staying around for the duration, I sure hope that’s not the plan for either of our children. I guess it’s all about finding the right medicine.
Make sure he IS taking his meds. My son would end up in hospital, everytime he went off his meds. He is on Olanzapine, and helped him become more stable.
my son will not talk about hearing voices. It’s like he’s embarrassed by it or something. When he’s in a pyhscotic episode he has auditory and visual hallucinations. He is 27, lives with us. He has tried to get/stay at . job, but just can’t do it. My heart breaks for him. He is on 9mg of invega PO. He takes that on and off. He used to be on injections, but now refuses them. This is a life long dreadful disease, and I don’t see any hope for improvement. We have been dealing with this for 10 years; hospitalized at least 5 times. He’s our “forever child”
My son has never spoken about his voices. He told me about people yelling things at him and calling him names, he always thinks it was real people, even when the only people are far away. We had to work to overhear him talking to his voices. We know from listening to him that he likes some of his voices.
We are in similar boat, it seems…My son is taking his meds but voices are with him 24/7…Sometimes they get too much for him and we just try and help him …Recently, he re-watched a Beautiful Mind (a great movie) and that seems to help.him…We are encouraging him to not interact with the voices and if/when they try to take over, we are encouraging him to not let them win…eg. voices didn’t want to go on bike ride, while he did…
I think the suggestion to urge son to try and not interact is a sound one…Watch a Beautiful Mind…true story and that is what he ended up doing