My wife was diagnosed with PD late March last year and started CD/LD at that time. 3, 25/100 tablets per day. Hal/del first showed up in late July. No issues before that. She has tried Nuplazid that appeared to work for 3-4 weeks then they returned. Stopped Nuplazid, switching to Seroquel, starting at 12.5 mg once a day. It seemed to work for short time (maybe 2-3 weeks) and then the hal/del returned. Dosage was bumped 12.5 mg each time and frequency throughout the day was spread out over time… read more
My husband has hallucinations/delusions paranoia and some memory loss, dementia? Angry physical episodes. He has tried Nuplazid with no success. Also was up to 200mg of Seroquel at bedtime and 400mg XR in the am, with minimal success. He is now in his third week of Clozapine with a weekly titration. Still having symptoms so we will see. Praying for a miracle ♥️🙏
Thank-you all for sharing your experiences. We did try a CD/LD reduction (down to 3 pills a day) thinking that at 95 lbs she was getting too much dopamine. That didn't help at all and after about a week could see slight issue returning with balance so now back up to 4 again. We have been told by a number of medical individuals about Clozapine and are not considering it because of the side effects and constant blood work required, and not really any guarantee it will work.
@A MyParkinsonsTeam Member...are you referring to CD/LD and seroquel when you mentioned meds? Were your Hallucinations just in late afternoon into evening? My wife's started that way but have slowly overtime just filled the entire day so really occur on and off all day.
I had to stop taking late afternoon doses of meds after 4p. I couldn’t handle the hallucinations anymore. That might be something to try.
Hi , I am my husband’s caregiver, he was diagnosed in 2020, he also has hallucinations, was seeing people in our home we have had our locks changed twice now, he says his brother is here from Iowa and wants to take our home and vehicles, his brother has never been here. Today we visited his sister for about an hour, when we left he asked where was Joanne, his sister!!!! He is on a low dose of Seroquel, it has helped some. This is really hard. I haven’t heard of any medication that actually got rid of the hal/del if there is something out there I would like to know about it .
Hi Todd,
My husband has Parkinson’s for 13 years . He is 71 years old. So he’s on much more Carbidopa Levodopa. Hallucinations and delusions started to get really bad in the beginning of November. Also was put on Nuplazid that worked 6-7 weeks. Just started on Seroquel at low dose. Psychiatrist will be slowly increasing. Started with 25mg and now on 50mg. So far, no improvement, only got worse. The neurologist mentioned that Clozapine is the only thing left to try. I’m very nervous about that medication. I am my husband’s caregiver, and this is extremely hard to deal with! I probably have to go out of my way to find a local support group.
Good luck to you!