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Invega Sustenna Questions


Yes. I understand I must do something because this is killing me. I have support through forums like this and FB groups, specifically for parents of adult children with schizophrenia. And I am very lucky to have a loving, supportive family who love my son very much. I haven’t had to deal with the horror of my own family turning against him. And I have lots of wonderful, supportive friends, most of them don’t live anywhere near, but they do try to keep in touch. Some send loving cards to me. But it’s still not enough. I’m very depressed and have lost interest in almost everything. This is bad, I know, isolating and avoiding, and I’m not happy anymore. But right now, I barely have the energy or desire to even eat! I do have ideas about ways that I need to change my self destructive habits, because he needs me. I have tried antidepressants, antianxiety meds, to no avail. I’ve tried a little therapy, but I can’t afford it. Yesterday, I found out about a support group that meets twice a month, for families and caregivers who have a loved one who is living with serious mental illness. I am definitely planning to try this group out!!


I wouldn’t be above sneaking pills to my son. I think he believes he’s still under court order, too, for his first committal, which was almost five years ago, and I’m not telling him any different. I know the civil liberties “nuts” would think I’m awful but I don’t care! I think we do what we have to do because we don’t have much choice, given the deplorable, criminal condition of the mental health system in this country!! My son has been on the invega sustenna shot since his diagnosis in 2013 and it did bring him out of psychosis for the most part with no side effects; didn’t gain weight, no weird tics or postures or those types of things, and I realize invega is a newer one and doesn’t produce the nasty side effects like the older meds, realizing of course this is a broad statement, and everyone who has schizophrenia has a different experience, just in general, has done well. But of course invega sustenna doesn’t do much for the negative symptoms. And my poor son has every single negative symptom on the list! I could go on and on.


I understand. Although I’m practicing more self-care, I can get depressed sometimes. Last year I attended NAMI Family to Family 12-week training, it was the best thing for me. I was able to talk to others who were battling similar experiences without feeling embarrassed. Some family members were attending several support groups as a way to cope with the “New Norm.” I’m glad you found a support group most of the support groups are free, which is great. Keep me posted on your experiences.


my son never had to take the pills…just the shot


I don’t know if this can help, but it works with my son. He hates and fears the hospital very much. I tell him that I don’t want him to have to go back to the hospital and that taking his medication will keep him out of the hospital. This worked for many years on the injection. After relocating here, I became very ill and we missed an injection. He then did not want any more injections, and is now on the oral Zyprexa. His symptoms didn’t come back for a few months, even when he didn’t take the oral. I think it must have been that the Invega Trinza was still in his system. But now, when he doesn’t take it, his symptoms quickly come on. It is really hard to handle and scary. But I tell him he is having symptoms, that I can see the symptoms coming on, and that he needs to take his meds, and that I am telling him this so he can stay out of the hospital. When he is this symptomatic, it is hard to get through to him, and he tells me that I am schizophrenic and that it is I who need to take my meds, and stuff like that. But I just stay with trying to communicate my loving message to him, and he does finally take the meds. It is his fear of the hospital and realizing that I am trying to help him stay out of it that does it.


Listen I can’t imagine being a mother of a schizophrenic and hopefully i never habe to know how you feel or what you are going through. I do know that as a mother it is our job to fix our kids to make sure they are taking the proper medication that we are doing everything we can to mame sure they are in the path to a physical and mental healthy self that i do understand and I mean sure we all tell our kids if you don’t do this to get better now you may have to get a shot later because well you know that fever has to come down one way or the other…i understand that part…i live that part…but now I’m going to tell you about the part of your sons world you know absolutely nothing about apparently …I understand your intentions are good you were only trying to help but you dont (and not just you but anyone reading this) youdont play off a schizophrenics fears you dont say what. Ever you have to to make them take their meds …i want to punch yoi in the face so instead ima take you to school…granted i don’t know what type of schizophrenia your son has …I have paranoid schizophrenia…and let me tell you a day in the life of my head is constant ducking hell…the voices why don’t you put headphones on one day amd put it on a talk radio show ok or whatever just make sure you match the same volume as everyone else is speakong to you because well that’s what makes it fun I then want you to go around all day with those headphones on amd o want you to be able to without ever hitting pause i want ylu to habe a conversation with everyone who wants to talk to you…oh amd dont forget you better just choose to talk to the people who love you because of you don’t well they will feel like your dissengaging from them and you might be ablout to habe another episode and then they worry and even if they dont say it lord knows you probably wouldn’t hear them anywH you can see it in their face and you know these people in your actual life like the ones in your head know you so make sure you try to interact with everyone you see…and if you are close to the person that you are having a conversation with i want you to remind yourself that they only talk go you because they feel bad or because they don’t want you to know what’s really going on …you may not even know what it is that they know but those voices you’ve been listening to on the headphones all day well i can pretty much guarantee that they have done told you a half a dozen times that this person has an agenda…who cares if its your parent of your best friend or any family member it doesnt mattwr how much a logic person knows this is absurd becaise somewhere you know its ducking craxy too …mental abuse people say it’s worse than any other abuse and to get out as soon as you can…how do you escape a mental abuser that literally lives in your head? Because thats what those son of a bitches that live up there do they play off pur fears they have fun with our anxieties …and everyone’s answer is always well can’t you get on meds…sure can but do you like how you feel after you been up 3 days? If ypu don’t know how that feels stay awake and figure it out and not the slap happy side np the part that kust feels like death that’s what we feel like on most of those meds intil we get adjusted …look im looking forward to getting this shot …o mean o habe tried so many meds and most don’t work amd if they do start to work and I get some quiet once in a while I feel like I’m dead i can’t wake ip i can’t get energy i just cant…anything…and add that to already not beimg able to live a normal life even tho i do wht normal people do i assure you i put on one hell of a ducking show for the people o love because well they want me to be ok and I need to be ok for them but fuck me running man i wanna put a bullet in my head every. Fuckimg breath . i take.so i drink becausw if i drink i can’t drink myself to sleep it quiets the voices bit those assholess are like a group of teenage girls sharing a ball of coke they never shut up but my point is understand. Your heart is in the right place and no i don’t know what level or what type your son has but i do lnow scaring him about anything more than he is already scared of or plying on the fears he already has is one of the shortest things yoy can do…

Im sorry if this was mean bit Jesus don’t fuck him up even more
…I’m vey self aware rovhr now bit one day i wont be and i hope someone is there to tell my family your hearts in the right place your just fu king up


Meg–sorry the meds haven’t worked for you, but many have been helped by them. There are side effects to every drug; you have to weigh the benefits to the side effects. Most side effects become manageable in time.

I don’t have sz (a loved one does) but I have a neurological disorder that requires a lot of meds to mitigate my symptoms.

Heck, I had to inject myself with a subcutaneous needle once a week for 10+ years to keep my disease from progressing. And the side effects from that weekly shot were horrible–fever, extreme weakness and more. When a pill form became available, I switched and am much happier.

I guess my point is that many, many people take meds for chronic conditions. It’s not unique to sz. And if you believe in modern medicine, you’ll read up on the science based evidence of efficacy and hopefully take advantage of drugs designed to give you a better quality of life.


Jan im not against meds I wish i could find one that worked for me I have been waiting to get my insurance to kick in because i want to try the shot I grew up on meds since I have migraines and as a kid had seizures. I wasn’t trying to imply that she shouldn’t encourage her son to take meds because she should i know if my kid needs meds for a disorder I’m going to try to encourage her to take them my main point on this was not to plah kff his fears of hospitals or anything to not add more fear to a situation that is already scary. I am. A mom so i understand where she is coming from like j said i know her heart is in the right place i just thjnk playing on his fear is wrong way to go about it


I did understand that is what you were stressing and appreciate your valid point.
How can we share that staying out of the hospital is our mutual goal without playing on that fear. Perhaps by just stating that and only that? Do you have any suggestions?


I am sorry when i read that you played on your sons fear of the hospital I imagined you standing in front of him i dont know playing on his fear. It wasnt until i read the words share that its a mutual fear we both have that I even considered the fact that maybe you tell him that you domt want him to go back to the hospital just as much as he doesn’t want to go. I guess what I was thinking was that you would stand in front of him and pretty much tell him he s going bacl to the hospital and imply its not any concern of yours… I’m sorry that. I got on the defensive side instead of asking more questions … And mom2 thank you for making me look at it from another perspective


Meg, that is so sweet and kind of you. Thank you for saying that. We can all learn how to respect our loved ones and each other. I really think that is the lesson for all of us. How can we help each other ? Thanks for sharing your opinions. Being able to question yourself and frame of reference is an awesome skill that many of us are still trying to learn. I hope we hear from your perspective more often.

I have to share that our son is home and is really present for the first time in a long time. I think it is uncomfortable for him but he is choosing to be around us, his family and I am so grateful tonight for that. He is my only child and I love him so much. Thanks for listening. Be well!