A question for the Schizophrenia Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

My son is currently in treatment for his condition. He is monitored 24/7, but the place where he is has levels, which encourages him to continue to do the assignments and tasks that they’re supposed to do to get to the next level. The doctor decided on his medication and allowed my son to provide his input as well. His medication is given to him nightly so it’s something that he is supposed to remember to go and get from the staff versus them having to remind him. That’s also part of the levels there and showing that they are taking the initiative and understanding their diagnosis. That the medication is necessary and that they shouldn’t have to be reminded to take their medication daily so that once they do get independent, that’s something that they’re able to do on their own and are consistent with that.

Well, I went through a lot of different types of medications. My first medication was strong tranquilizers and more or less made it almost impossible for me to make any terrible moves or wild acts. I more or less was anesthetized from the tranquilizers and I couldn’t really do much else but sort of sleep around and sort of wobble around certain places and that, and then as time went on, the tranquilizers turned into different type of medications, so they weren’t so strong and tranquilizing and I’m on a type of medication now, I guess it’s more or less something more to help with the chemical balance than anything, I’d say. They say it’s more or less something to, I guess, replace the chemical imbalance in my brain.

Well actually my son did not decide on this particular medical treatment for a long time. He had been refusing the medication for years after he was diagnosed. Many hospital visits, actually 30 hospital stays before he actually started taking medication consistently. So it was really more so … I think he got tired. And even at this point, he’s not always consistent with all medications, especially his psychotic medication.

I take Seroquel 150 milligram medication. It helps me sleep and my doctor prescribe this to me to help me not see so many visions of creatures and unusual things that I see.

Currently, I see a therapist twice a week for talk therapy. When I started therapy, we did a lot of crisis intervention sort of work. It was a lot of learning how to manage suicidal thoughts and working through the more acute symptoms of psychosis. Now we are able to do more trauma work and try to uncover some of the stressors that may trigger an increase in psychosis symptoms. I also see a psychiatrist at least once a month, and I’m on a medication regimen right now. I take Trazedone for sleep, Lamictal for mood stabilization, Prazosin for PTSD, and Clozaril and Seroquel for schizophrenia to help me the with initial symptoms. The choice in medications was based on a trial of a lot of medications over the course of multiple years. So these are medications that have been chosen because they’ve been most effective in terms of treating symptoms. I choose to do therapy in addition to medication because I find most effective for me being able to address underlying issues while also treating symptoms with medication. I also do group therapy. Some of the groups I’ve done were for people with mood disorders or people who’ve experienced trauma or like DVT specific groups. For me, this is important because it provides me with peer support that I struggle to find naturally in my normal day to day life.

When my son was 17 and diagnosed with schizophrenia, we tried many medications, mostly pill form. Seroquel was a first biggie, and it appeared to actually make him go into a psychosis. It was not helping in any way, shape, or form. A problem we were having was nobody was listening to us. The doctors wouldn’t listen to us. They thought this was the way [PII redacted] was, the way he was behaving. That was not the case. We kept trying to tell them, and tell them, and tell them. This went on for about three and a half years until he finally… They put him from… He was in a mental health unit at a hospital for three and a half months. They got him on a shot of Invega Sustenna once a month. While that was taking effect, he was in the hospital for, like I said, three and a half months. They transferred him to a nursing home. He was in the nursing home for about six months. They wanted to send him home. We kept telling them no. Even though he was much better, we were told the only way to get the help we needed to get him out of our house was to say no. So we did that. Eventually, the state took over and they found him an apartment, got him a Section 8 voucher, and even gave him money to buy furniture, and toiletries, and everything he needed for his apartment. Someone from Cornerstone Services helped him pick out everything he needed. We didn’t have to do anything at this point. And then, after he was settled in his apartment, we slowly started taking back over care of him. Since he’s been in the apartment, which is about a year and a half now, things have been much better, much calmer. Although, we do see changes in [PII redacted] of mild psychosis, the shot is keeping it under control. We believe he’s in a mild psychosis because of the alcohol he’s using, possibly marijuana he may be getting from somewhere. We noticed caffeine is a huge proponent of psychosis for him. Too much caffeine, and then he stays up for days on end and that creates more issues. That’s the point we’re at right now. He still gets a shot every month and is doing well.

Well, he’s been out for a long time, and so now he’s on an injectable medicine and it’s the result of over many, many hospitalizations and realizing that there is no way that he could ever be on an oral medication again. He has to be on an injectable. Otherwise, he just constantly ends up in trouble and it takes a toll. So he has a FACT team, which is around the clock up people that he can rely on. And that happened about 10 years ago now. When he ended up in Florida, he used to take off, and he got into some minor trouble and hospitalizations and ended up with a fact team, and he’s had it ever since. So it’s a lot of trial and error. I think he’s been on every medicine possible and finding now that Haldol injectable is the best medicine, and that’s what he’s doing.

My son and I manage the situation through medication and therapy. He’s in a group that does therapy weekly. He’s also on medication. He takes Depakote, Abilify, Trazodone. He takes sleep medications. Therapy…He looks at videos of his condition on YouTube. I also go to therapy off and on with him through his school.

Me and my doctor decided that the best option with the least side effects medication would be taking Abilify. And that’s how we decided, because I had tried other medications before Abilify and the side effects were not… I was not able to deal with the side effects.

I was taking Haldol and Cogentin to monitor it but the Haldol, I became tolerant to it, so I had to switch to Seroquel and it’s been more effective than the Haldol. It does have a problem with weight gain that I’m trying to deal with, but it was the best option out of the four effective medicine for me to take. I mean, it works for me, so I guess I’ll just have to deal with the weight problem with diet and exercise.

What I do now to manage my condition are a few different medicines and medical therapies. My doctor and I have decided over this after years of trying to deal with everything by myself.

So I decided to take myself off all my medications, which I’ve been on for all of my life, which it was a good thing on my part, because then I can learn how to take it one day at a time without medications. And dealing with schizophrenia is quite a challenge on a daily basis. I should know because I just been off my meds for about one or two years. And it’s been a really hard challenge. And it’s not been an easy approach, but I’ve been doing it.

I currently do not take any medications because my condition is under control with only me managing it with counseling.

The way that I manage this illness is by taking a couple of different medications. I take Clozapine, Benztropine and Loxapine, and those really greatly reduce the episodes. I also do some volunteer work and other recreational activities, such as running and reading. The way the doctor and I decided on this particular medication was actually trial and error. I had been on a bunch of different medications that worked, but didn’t quite work as well, so again, it was just doing trial and error. And this particular medication, I have to get a blood draw every month in order to get the medication, because there’s a 1% chance that it can affect, I think, your white blood cells. So that’s about it.

The medical treatments - I go to a psychiatrist nearby every three months that insurance covers and I visit with him for at least 5 to 10 minutes on an appointment. He handles my medication. Once every morning I take that medication and he also asks me questions. They’re very good questions, to see if my condition has changed, should he up or lower my medication and diagnose me a little better, and let me know from those answers if I need more questions to be asked to determine if it’s getting out of hand, my condition, or am I safe to be around and can I manage money and all that, personal questions.

My husband’s condition is managed by medication and therapy and the doctor and him came to this. We are constantly communicating with his doctor multiple times a week, and it’s just been a trial and error. The doctor has been trying to find the right medication for him that will take away the voices and the paranoia. And we’ve just been trying to describe his symptoms as best as possible with his doctor, just to, I guess, try to live as normal life as we can.