@naturallycured, I have been following your inspiring posts for a while now. My son diagnosed with sza (after Sz diagnosis few years ago) is on Risperidone, Seroquel, lithium and epival for over a year now. Despite so many meds, he’s no where near relative normalcy. His positive symptoms are relentless , with anger and delusions. He’s constantly yelling at the voices(they are nasty I think!!). He doesn’t have much negative symptoms…he showers, dresses well, motivated to do courses, online volunteer work and so on. It’s the voices in the evening that distract him enough to throw up his hands and stop doing any school work. It’s heartbreaking! He’s trying really hard! Btw, he claims he’s not talking to any voices!! He’s apparently preparing for a speech and hence the soliloquy
From your posts I’m thinking should I try starting my son on Amyloban 3399?? Does it help quieten the voices? Since he doesn’t have much negative symptoms, would the Amyloban set off mania? The boy’s problem right now is the disruptive angry voices. The APs are doing nothing. The pdoc doesn’t think he needs to change anything.
The reason I’m worried about Amyloban triggering mania is, in the past he became manic after the psych. started him on Rexulti (oh boy! Crazier times!) and he went totally manic, got arrested etc. After a year another psych. thought he might need an antidepressant and we added Pristiq to the cocktail of drugs. The boy went off the rails within 2 weeks and had be hospitalized. So he was then thought to have sza and not sz!
So I guess my question is, is there a danger of Amyloban setting off another manic episode? Sorry about the long post and thanks for reading this.
So happy to hear your grandson is doing well on clozapine. We’ve been considering clozapine for a while but worried about the side effects. Besides my son hates weight gain! If nothing else works clozapine it is.
Best wishes!
From what I’m reading from others I’m starting to think that the newer atypical APs actually don’t work as well as the older meds. My son is back on haldol and two weeks in he is showing insight into his delusions. He told me yesterday that he is starting to realize that the things he has been believing are nonsense. Having said that, we are still in the thick of it with him and still unsure if this could just be manipulation to get back home but we are hopeful it’s progress. Has your son tried any of the first generation APs?
Thanks @naturallycured! You are right that it’s a chance that we have to take with Amyloban. I’m glad you are stable and hopefully you can share later on what helped you. I’m planning to order Amyloban and have faith.
Two words. Cloza Pine. It’s only been a few months on it (along with many other Rx’s) but we’ve seen tremendous improvements in attitude, awareness, and compliance. Keep up regular lab work to avoid negatives.
It’s a generic. The big pharma companies push all the new drugs (higher margins). The pharma companies cloak their guidance in safety but I don’t believe them. And none of them are as effective on SZ in numerous studies.
Can’t believe it takes so much education and pushing to get to this proven line of therapy. Our many doctors tried all the latest pharma drugs ($$) before I pushed them to use the tried and true.
Hope your child can tolerate it - which labs will confirm.
Thanks @Sando! We are leaning towards Clozapine. Life has been hell! Today I’m ready to throw in the towel. The boy was nasty towards me unprovoked. Called me vulgar names and left me broken. I’m truly crushed😢. This disease is worse than death. I wonder sometimes if this is the way it’s going to be for the rest of my life?! I’ve quit friends, relatives and life as I knew it. I consider myself an optimistic person but today I realized I’ve nothing to look forward to except abuses and aggression. Everyday I wake up thinking today will be a good day. And end of the day I’m hopeless. Why can’t someone find a cure for this wretched disease? He won’t let me go out on my own. His yelling keeps me up at night! I’m exhausted during the day. How do I look at this glass as half full?!
It is hell. We’ve been there. Likely will visit again. My only encouragement is to keep having reckless, irresponsible hope. There’s got to be a better doctor, therapy, facility, drug, something out there for our kids. Got to be. So we keep trying. I’ve recently decided to go sober. 20 days in. I don’t like it because the pain is less bearable. But it is starting to prove helpful. Better health. Less risky, self-focused behavior. Fewer hangover regrets. I’ve tried hiding in the bottle. It seems to just add another bad factor into a bunch of suck.
For me, and I’m only speaking for me, my faith keeps me hope-full. Can’t imagine dealing with this situation without believing in some bigger purpose.
My son tried many different medicines until we found one that really helped. Clozapine has been a game changer for him and us. I know it’s often called the last chance drug but it really changed his life for the better.
My son has been through many meds as well- this last run from October till now is haldol (?) he has had a wonderful response. He says that the chatter has ended giving him peace. He told me that when on risper idol vrylar etc he still had a lot of negative comments about me- as his primary support person - that I was telling him to kill himself wished he was dead etc.
He has gotten a job now is pushing for a more demanding job a pleasant and functioning
Hope is what keeps us going @Sando! And faith as you’ve mentioned. My son’s pdoc wants to maintain the same meds regimen although we’ve told him they haven’t done my boy any good. With the Covid situation here finding another psych is virtually impossible and will take months to get an appointment.
So heartening to hear your son is responding well to Clozapine. And good for you that you are easing off the bottle. Give us clarity, eh?!
Best wishes to you and your family!
Thanks @Jeannet ! I love stories of hope like yours. So happy your child is doing better on haldol. How long has he been on haldolnand what are the side effects you’ve noticed?
Best wishes!
Thanks @searchingparent! All of us are waiting for that one medication that might work for our loved ones. So glad clozapine worked out for your family! What were the symptoms your son had? Did he have auditory hallucinations? Those are so disruptive for them. What other meds did he try? How long did it take to respond to clozapine? And what about side effects? I’m sorry I have so many questions! Best wishes to you and yours!
Love your post. I too have found myself searching for food and alcohol amidst my son having breakdowns. I know I’m only making it harder for myself.
My son is off all meds bc he thinks they caused akathisia. Now we’re back on the roller coaster.
Hi Terra, My son tried risperidonel, Ziprasidone, Paliperidone, Aripiprazole plus any others that I can’t remember. I think we tried about 5 in a two year period. He did have auditory hallucinations & extreme paranoia. He even believed that his father and I were not really his parents but impostors. Those were difficulty times. Police came to the house twice. In and out of the hospital. Finally clozapine was prescribed. In two weeks we started seeing improvements. Slowly over about 6 months to a year we got our son back! He has minimal side effects. HE does have to get his blood tested every month but so far it’s been good. I know there is a serious side effect that can alter his blood but he was not able to live with out it. I hope you find the right medicine for your son.
Welcome to the forum @Jane16 you won’t be a newbie for long if you keep coming back. I recommend that you do, this forum and the ideas I got from it were a definite key to me being able to help my daughter out of psychosis, on the best treatment for her, and into a good new life.
@ Terra nothing worked well for my daughter but the Haldol dec shot which she’s been on for over 2 years now. The only lingering side effects were weight gain and having hiccups once every few days or so for a short time. The nervous legs went away using Benadryl whenever they occurred and has not happened for over 1.5 years now. I believed during her years of psychosis that it would have been better if she had died, but I kept hoping, and felt guilty for those thoughts. When she kept me up at night we built a divider wall/door in the hall to muffle the regular night time screaming at her voices. I got a noise machine, earplugs and a fan to drown out the screaming. Still I got woken several times most nights. Now I still wake up at 2 am or 4 am or so almost every night although the house has been quite for 2 years now. You will have to go out on your own without him for your own well being, you need time away. I started spending nights at a girlfriend’s house to get uninterrupted sleep and once I just left for a whole week. You MUST keep hoping, hope will get you through somehow. I agree with @Sando . Each little thing you do to make it better will add up to a better life somehow. Believe it.
We tried the more natural route, supplements, homeopathics, and 2nd gen antipsychotics. The 1st gen haldol shot was and still is our best result.
Thanks @oldladyblue! When I recently joined this forum I read your posts about your journey with your daughter. Im trying alternative remedies for my son besides the cocktail of APs and mood stabilizers. Like homeopathy, vitamins and so on. I’m going through what you went through…sleepless nights, the yelling and anger seeping through the door. There are times when I think that what he’s going through is worse than death. When I’m really despondent I say to the Power to take him away if it cannot cure him. I feel guilty later for thinking that. But I cannot imagine my son being homeless and destitute when I’m gone. For now, I’m not giving up. I’ll fight like never before to help my boy. I’m happy for you @oldladyblue. Wishing you the very best!
After a year another psych. thought he might need an antidepressant and we added Pristiq to the cocktail of drugs. The boy went off the rails within 2 weeks and had be hospitalized. So he was then thought to have sza and not sz!