Carbidopa / levodopa and Hallucinations: What Users Say

• Dav...
• Taken for 1 to 6 months
• August 4, 2015

Carbidopa / levodopa for Parkinson's Disease "Been taking Rytary for 5 months. First, was on 3 pills 3 times a day and did really well. The last 2 months, it has been 3 pills 4 times a day. I have been feeling agitated, nervous, seeing things that are not there, and thinking my home is the place I used to work. I am afraid of hurting my wife and have terrible night dreams. I feel I have nowhere to turn for help. I only see a PA when I go to the doctor, and she just gives me more medicine, some of which has very serious side effects, and has recommended DBS. These symptoms are a daily occurrence, and I hope it is not the drug."

• and...
• Taken for 1 to 2 years
• October 28, 2019

Carbidopa / levodopa for Parkinson's Disease "I have been using Rytary for a year. 1 pill 6 times a day. The past 2 months, I have had hallucinations, falling asleep at breakfast and all during the day. Not able to function very well, falling asleep with hot or cold drinks in my hand and not knowing I was spilling liquid everywhere. The hallucinations are very real, vivid, and frightening. Rytary is not helping me physically at all. Up until 2 months ago, it was great, and now it has turned against me!"

• You...
• Taken for 2 to 5 years
• November 13, 2017

Carbidopa / levodopa for Parkinson's Disease "I've been on Rytary since 2015 and at times was on 5 pills 4 times a day of the 48.75-195 dosage. Partial neuroleptic seizures were a result, mild psychosis, paranoia, anxiety, mood swings, depression, dyskinesia, dystonia, impulse control, sleeplessness, among others, all things I've dealt with at some point along the way. I'm now on 3 pills 5 times a day, with a small dose of 2 mg Artane in between 4 times a day. I have not been able to really lock down whatever makes it work. It is wildly inconsistent, but when it's on, it's on, and I get some normal time. Certain strains of medical marijuana help increase the efficacy of this drug, kicking in sooner and can give me up to 6-7 hours of normal time instead of 1 hour to kick in and 1-2 hours normal time."

• KMa...
• Taken for less than 1 month
• August 18, 2021

Carbidopa / levodopa for Parkinson's Disease "My father started Rytary 48.75-195 dosage, 3 pills, 4 times a day. He got worse with this medication. I personally think he was overmedicated by his doctor. He hadn't experienced dyskinesia yet, and within the second day of Rytary, it was so bad we were worried he would break his teeth due to how he was tightening his jaw and grinding his teeth. He had only experienced psychosis twice within his 10-year diagnosis, and every single day he was suffering from psychosis; irritable, argumentative, paranoid, angry, and extremely sensitive when he would talk about his past. Almost as if his personality had completely changed with Rytary. I'm not sure if he will continue it because he's gotten worse mentally and emotionally. It's a lot for us, caregivers. Physically, he's walking better and sleeping a tad better. I think Rytary needs to require a psychological exam before being prescribed this medication for Parkinson's."

• Alm...
• February 17, 2020

Carbidopa / levodopa for Parkinson's Disease "My 87-year-old dad has had Parkinson's disease since 2014. He’s been on 25/100 mg C/L, 2 pills 2 times a day. Then my dad’s left leg looked really weak like 3 weeks ago, and his neuro put him on Rytary 48.75 mg/195, 2 pills 3 times a day. The first dose he took at night (after his first 2 doses of C/L - morning and mid-afternoon), he was able to sleep all night and had more strength in his left leg. But 2 1/2 weeks later, he started hallucinating and seeing goats and people talking and hanging out the living room window. His stress level was up, and he had the worst shakes. He was restless and had little sleep. The neuro said to give him the dose with food, but my mom and my dad were exhausted from the hallucinations and little sleep. So we skipped his evening dose of Rytary, and he slept all night until late morning. We gave him C/L again and this time 2 pills 3 times a day. Still monitoring him to see how he does. I wonder if we can give him C/L and then one dose of Rytary in the evening??"

• bri...
• May 24, 2020

For Parkinson's Disease "I am currently 60 years old and have had juvenile onset Parkinson's since back in 1975. I started taking carbidopa/levodopa 25/100 mg (instant release) 3X/day. Over the next 35 years, that dose slowly increased until I was taking around a massive dose a day, with significant off times. I also had debilitating dyskinesia, dystonia, and falls. So, in the late 2000s, my neuro told me it was time to consider options. Like deep brain stimulation (DBS)? So I gave in and had bilateral subthalamic nucleus (STN) DBS. WOW! Yes, I have some newer speech issues and more of a fall hazard than before. But the old me was BACK, feeling great. I was able to cut my meds back down to 400 mg of carbidopa/levodopa extended release per day. Today? I'm up to 800 mg of carbidopa/levodopa extended release per day, plus 274 mg of extended release amantadine (Gocovri), but my DBS keeps my off times to an absolute minimum. I still have issues with dyskinesia, dystonia, and get a few hallucinations late at night from my amantadine."