I’m glad the vomiting is a side effect that goes away. Thanks for updating us.
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Well, had a talk with my husband this morning and he agreed to see his psychiatrist tomorrow as scheduled and to follow instructions, even if it means going back on medications (which most likely it will).
I did pretty well using LEAP.
Once he realized that I was acknowledging that the ball was totally in his court in all ways (i.e. whether or not he attends the appointment, whether or not I come with him, what he tells his doctor, and whether or not he complies with any recommendations), he came on board with giving it a try, despite his conviction that I am “working against him” with unknown others.
Hopefully, he will follow through and things will improve.
I am feeling at peace with things at the moment.
Prior to talking with him, I had to get to a place of acceptance that I have no control over either the course of his illness or how he chooses to manage things. And also with the fact that our relationship may or may not weather this.
I told him that I was proud of us both: we clearly are two people who love each other very much, as we have had to deal with some extraordinary circumstances that would have broken most couples and that whatever happens next in terms of our relationship, that I feel good about us, as individuals and as a couple. He seemed to appreciate this.
Unfortunately, I do think he is quite prone to tardive dyskinesia (which is why we had to take him off the medication back in January). From my reading, older people are more likely than younger people to develop these symptoms and there appears to be some familial tendency for this in his family.
Given this, I was really hoping he’d be able to maintain stability without medication (he was on half of the smallest dose he could take for a couple of years and still developed symptoms of TD). But it is not looking like he is one of the lucky ones. Or not in this way. But this is something for him and his psychiatrist to address.
And on the positive side, he has been able to have a reasonably decent life and we did have the chance to have a good marriage. So, however it goes, things could have been worse.
Wish us luck, please.
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I’m sincerely wishing you good luck @Itsastruggle , although I know it takes much much more than just luck to get a handle on this horrible beast of an illness.
Regarding the TD, there are now 2 FDA approved meds on the market to treat that. Hopefully, those will work for your husband, if need be.
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This is exactly where I am with my son. I wish you the very best of luck on your journey together.
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You are very wise and handling this in a way that is a good model for many of us. You are being realistic and yet hopeful, and I am hopeful for you. We can’t predict the future with SMI and must live one day at a time. Even if things don’t go perfectly at first, your perseverance over time to stick with the LEAP strategy surely has a chance of paying off for the longer term. This journey can be exhausting and, of course, you have to take care of yourself and determine how much you can personally handle, which could be even just taking a break or stepping away for a period of time, if possible. You may already know this, but there are several AP meds that have less risk for causing TD and there are also some meds that counter the effects of TD.
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@Maggie46 our son was on Abylify for 3 months and there was no improvement whatsoever. He became violent on this medication and gained weight. He is on 80 mg of Geodon now and showing rapid improvement but not yet 100%. Different medicines work different with each individual especially depends on what prominent symptoms they are experiencing. After the abylify his doctor wanted to take him completely off all meds to get back to his baseline so we went off meds for 6 weeks before starting Geodon. Almost overnight he seemed to improve. We are in week 6 now and he’s improving. He doesn’t have hallucinations or delusions other than to be very critical of people and seems to focus on one person at a time. Every single thing that one person does or says he just latches on and talks constantly about that person. That symptom has not gone away.
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So true, it’s very challenging, days months years go by and still no improvement, still waiting for a miracle.
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My son cto will be over at the end of this month I don’t know if the doctor will renew it. If it’s not renewed I am sure that my son will not take any medication last month he was given invega 263 mg every 3 months plus abilify every day. He keeps saying that it’s poison and making him sick and he can’t enjoy anything. We had to put him in hospital 4 times I just can’t do this anymore the stress is making me so sick.
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I have great respect for how hard this is. @Margi, do you have anything to use as leverage for your son to take meds? Does he live at home? Is there a different med he might try (using the LEAP strategy) that might have less side effects that might make him more med-compliant?
I sent the dr an email telling him that I don’t think my son will continue with the injection and suggested that he extend the CTO. He hasn’t replied yet to me. I hope that this doesn’t mean that he will not extend the CTO. My son will really hate me if this goes this way.
Our son’s first doctor said them being very angry with us can happen when we force meds. I am so sorry, we try to make the best choices for our family members.
I hope the doctor listens to you!
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@Margi - Hi. My son has been on Invega Sustenna for 1.5 years. He just got another 3 month injection today. What I found was that as the months went by he just got clearer and clearer. He works, got a promotion, does not hear voices, realizes that I am real. He was not going to get his shot today. But decided to get it. That may change in the future, but he is staying on it for now. I just wanted you to know that it takes a while on this shot. It wasn’t like he got super clear a few months after, it was gradual. I was kind of interested to see what happened if he went off as I know some people say they shouldn’t stay on forever. I’m sorry you are going through this. I had many years of living with his psychosis. I’m surprised your sons doctor went straight to the 3 month shot vs the monthly but maybe that is ok since he could take the abilify.
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I think it’s great that a 3 month injection is an option for treatment. When I was a caregiver to my sz ex, this wasn’t an option, that I knew of.
I can see him questioning the need for continued shots, without a court order. But maybe as the patient gets “clearer” he is no longer paranoid about getting them?
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Hi Diane
Did your son not get his injection for this month.
My son has been on Invaga Sustaina since Feb when he was in the hospital. Since then he’s been on a community treatment order. The CTO only lasts for 6 months. In the past he did get a lawyer to fight this. The it was revoked due to a technicality. I pray my son will not fight this again. Every day he tells me that all these drugs are making him sick and says that we’re just harming him. I don’t have a good feeling that he will continue taking the medication. He also is taking 10mg seriquel and 15 mg abilify
.
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I strongly suggest using the LEAP strategy to gain the trust of your loved one. That is a start to medication compliance.
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Hi Margi, He did take the shot this past month. He also takes seriquel. He’s been on it for 1.5 years now. I do recall how your son fought the injection with a lawyer. My son was court ordered until now - so now we’ll see if he gets his shot in Jan.
@Jan - I’ve heard they will eventually have a shot you can get annually. He used to say he was going off for sure. Now he says he’s not sure. So we’ll see how all that goes : / hopefully : )
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My daughter is back in the hospital now. And one month pregnant. I’m not surprised somehow. Not sure what to do now as a father. Will this ever end? Pregnant and has schizophrenia. She doesn’t have the capacity to raise a child. Who know who the father is? Our daughter will be in the hospital for at least 5 days. Then, she will go to mental health court where it will be determined if she still has suicidal ideation. Not sure what to do. I thought retirement at 66 would be good. God must have had a different plan.
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Sigh. I hear you @trusting. I am so sorry that on this eve of Thanksgiving your family is going through another crisis from schizophrenia. This disease is a cruel thief of all that used to be hopeful in our affected loved ones lives. Without medication, the psychosis overpowers and causes such stress. And a pregnancy on top of that? Oh, my, I am so saddened by the situation. I wouldn’t know what to do either. It is good that you came on this site, at least here, you know others totally understand.
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Sorry man, like many here, you have been fucked… Day by day… no words will help IMO, just understand you are not alone in this cyber world but no easy days ahead… I am 58 and fucked hard without lube…
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I know through my faith that there is a God of mercy. I know too that self-surrender and trust are the only ways to go. Letting whatever is happening happen in it’s own way. Before I die I want to leave this little ego centered world that I created becoming aware we are all One and that we are all in this thing together. Thanks for your support.
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