Hallucinations + Delusions as med side effect, are either worse than the other? Will they be permanent if not addressed?

[daughter-Advocate]

dad started parkinson's meds in late March this year and has hallucinations + delusions as a side effect, reported in May. he started with C/L + Mirapex 2x/day (March) -> 3x a day (April - May). Now he's only on C/L 3x/day, and d/c'd Mirapex for 3 weeks), still having hallucinations. bradykinesia dominant w/ back pain, no tremor.

when he first told me about them in May, it was so casual for him. i thought about scary ghost-like, morbid, dark shadowed figures as he described what they were doing, but he said they're the opposite - colorful, shiny in gold color, which was a bit of a relief in a way.

he mentioned a big guy and a baby next to him in his bed one time (tried to caress the top of the baby's head but it disappeared) realizing it wasn't real, but didn't question it because he thought he was dreaming instead. they don't do anything to him so he's not frightened of them. they don't talk to him either. they come out of pantings, the ac, the wifi box's green lights, small women and children, animals in our see-through snack box. etc

he also mentioned seeing a two-headed figure once before standing in the living room; unsure of what it was, but knows it wasn't real because it looked so funny and still, he wasn't frightened. sometimes he would leave a bowl of milk in the middle of the night for a group of party people that comes to the living room - that one was a bit concerning when he told me.

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TLDR: even after 3 months, it sounds like he still has insight. he said when there's real people in the room, the visions go away. they affect his sleep though. he says they show up in the day, even on his phone, but even more so at night, even outside the window at the bridge. He's already restless enough because of his back pain and always needs to use the bathroom to pee almost every hour.

Does anyone have an idea if these hallucination side effect doesn't clear up or get addressed for the trade off of "better mobility", will they continue to progress and get worse? or even become permanent? what kind of visions do people see after delusions? is there another stage? i don't really see much resources or talks about this. Was this ever talked about by your neurologist? It's hard to reach ours so I'm here looking for first hand experience.

do other patients have similar hallucination/delusion experiences when just starting parkinson's meds?

btw, no psychosis history linked prior to this med regimen or within the family.

TYIA!

[LAJ12345]

it’s the meds you need to slowly decrease him off them and find something better. How disabled was he before starting on them?

[daughter-Advocate in reply to LAJ12345]

thank you 🙏

Pre-covid? Hardly… but gradual progress towards weakness and isolation. He was a really active person (ie: biking nearly 8-10+ miles, chef, goes to the park, ball, woodwork etc). But suddenly his back pain became worse which caused him to stay cooped up and wanting pain relief throughout quarantine. Then came the slowing down of movements bc the pain was too unbearable. Leading up to now, 4 years later starting the Parkinson’s meds and he’s suddenly having these hallucinations.

[LAJ12345 in reply to daughter-Advocate]

well if it was me I would be trying to slowly reduce out of any medications except the straight levodopa / carbidopa instant relief product, then spread that over the day with 5 smaller doses, around every 2 1/2 - 3 hours. Then see how he is after that. Better or worse.

Is he taking any supplements?

Has he tried physio? Massage for the pain?

[twotutts42]

I was diagnosed in 2009, have never had mental illness , I worked the last 12 yrs in an acute adolescent mental health unit.

I was admitted to hospital with impacted colon a year ago.. It was while in the hospital they decided that my PD medications needed increasing. With extra C/L, and they gave injections of morphine for pain I suffered from PD and the constipation plus a UTI….. I got phychosis, never had it in my life before. I got so bad they had to put a security guard to watch me as I just wanted to leave hospital. Thought staff were poisoning and tampering with my food. The worst dreams I’ve ever had were very ,frightening .

Just a thought…..has your Dad been given any strong pain relief or medications for his pain etc..?

What was supposed to be a two day stay in Hospital …..turned into about 9 weeks. They stopped all my meds made my movement worse. It was only the fact that my best friend of 40 yrs who is mental health nurse kept telling the staff that this was a medication psychosis and not PD dementia. Luckily I got referred to the mental health team, I was prescribed Quetiapine to I take, 25 mg at night, that was enough to stop the delusions etc.. or slowly increasing until the Delusions stopped.

My Doctor told me that ……Schizophrenia is other end of Parkinson Disease. PD not enough dopamine….Why we take meds. …Schizophrenia is caused by too much dopamine….causing hallucinations etc. is how it was explained to me.

The Quetiapine will lower the dopamine level……it’s a very fine line.

But the fact that your Dad realises that they are not real is a good sign.The quicker you get it checked the better.

Can you get him an appointment with mental health or can his neurologist refer him. Check if any medications he takes are all compatible with each other. And side effects they may have,, don’t assume that because it’s prescribed that it won’t interact unfavourably. I really hope this helps you and your Dad, my partner was distraught when I was in same position as your Dad, thought I had PD dementia.

I would just like to say that it may not relate to your Dad and could be something else entirely, but seems so similar in many ways thought I must answer you, and tell you my experience……I have been 100% since .

Wishing you all the best and hope you find an answer .

[daughter-Advocate in reply to twotutts42]

I truly truly appreciate your insight and sharing your experience! So glad to receive confirmation that these hallucination side effects can be reversed. I believe this is also medication induced psychosis. I hope you are continuing to be a lot better right now. All of us need someone like your best friend as part of our care team!! Are you now still hallucination + delusion free?

Did your friend or someone from their mental health team offer medication overview to make sure your meds weren't interacting? That's something we are in dire need of, especially someone in the direct field instead of a care advocate/family member.

My dad was prescribed Quetiapine 25mg + Gabapentin when we reported the hallucinations + restless nights. But I don't think the Quetiapine is doing anything. Started taking it at the end of June, almost a month now and the hallucinations are still present while just being on Sinemet, along with the increased pain coming back and leg swelling. The common denominator in the research I found and like you said is that the higher the dopamine, the more hallucinations/confirms the presence of hallucinations. I also think the leg swelling might be a side effect from the meds added ... and not enough big movements. Just standing cos he's so stuck with his body. He was doing fine before adjusting the medication to see which one was causing the hallucinations. Which is why I believe it's medication related and that he might be on too much dopamine BECAUSE the only dopamine related med IS Sinemet. I think i'm also realizing there's a link with how when he takes the Sinemet, he immediately starts to feel pain/stiffness in his arms and legs and tries to relieve it by using an empty lotion bottle to tap and hit the areas. He and I communicate in our mother language and since much of PD research and communities are in English, there is a bit of weariness to make sure what he's feeling are the side effects of the medications vs a new PD symptom. Leg swelling and immediate hallucinations are not PD symptoms so that opens the medication psychosis door.

Strong pain med relief? mm.. since he was doing well when starting the Parkinson meds he did not need them anymore, but he is now needing them since the reduction process. He was on a cocktail of pain meds for 4 years prior to starting Parkinson meds during rehab, like tramadol, tylenol, oxycodone, patches, creams, oils, anti-depressants, etc, but that didn't work very well for him. He even had trigger point injection, and still no relief. So many "first/second line of treatments" and it's like they were hardly doing anything. But the ortho and neuro surgeons say he should never get back surgery. To them that's great news, no need to go under the knife, but to my dad, that's like saying "i can't help you. you're gonna have to be in pain forever". I do have some of those pain meds around from discharge so he'll take some when it's too miserable and now he's taking a lot more, which feels like we're back at zero again. Like no progress has been made.

I'm hoping by adjusting the C/L (Sinemet) would lower the hallucinations, and to a point where it would still be beneficial for his mobility -> less/no pain.

By the way, did your pain at the time increase at the hospital from the increased C/L? Was that you were given the morphine injection or was that for the UTi or the initial pain from the impacted colon?

[LAJ12345 in reply to twotutts42]

your diagnosis sounds 100% correct to me!

[Oneworld23]

My brother WP suffers horribly with hallucinations some days are really bad, he also thinks people are talking about him and that the neighbours are listening to him through the TV. I feel so sorry for him. Doctors know about it but don’t do anything

[daughter-Advocate in reply to Oneworld23]

So sorry to hear this Did the hallucinations start as a side effect to the Parkinsons meds?

[Oneworld23 in reply to daughter-Advocate]

It appears to be the case, quite a few of his meds do have hallucinations as side effects

[WinnieThePoo]

My father was on dopamine agonist patches (like mirapex), and sinemet, and suffered hallucinations when weak following bowel cancer surgery. I have been taking mirapex for 3 years, now combined with C/L and do not experience hallucinations.

If I read this correctly, for 3 weeks the only medication your father is taking is C/L. He hasn't taken mirapex for 3 weeks but is still having hallucinations.On that basis it is very very unlikely to be mirapex that is responsible for the current hallucinations. They are a well known side effect of the drug but stop when you stop the drug.

Sinemet also lists hallucinations as an infrequent side effect, but it is unusual.

Parkinson's disease, old age and frail health are all major causes of hallucinations. With Dad he would get hallucinations when weak due to surgery or other factors. I can think of 2 elderly relatives who had hallucinations while suffering bladder infections

[daughter-Advocate in reply to WinnieThePoo]

yes you got that correctly and summarized it concisely!! (I’m still working on that >< 🫣). Ty for doing so!

Happy to hear you hadn’t had any hallucinations while on the combo!!

[rsacdoolittle]

Dear Daughter-Advocate, I am also my Dad's daughter/advocate and although my mom is the main care-giver, I am quite involved in several ways and live just 5 minutes away. My dad used to have some hallucinations, but not really disturbing psychosis or dementia-seeming thoughts behavior, especially not really bad or frequent.

Several weeks ago, he underwent surgery that was unplanned, so no time for us to prepare or even think about contacting his neurologist. Dad has had soooo much happening cognitively pretty much ever sense. I cannot help but believe the trauma of all of this downward cycle brought on the changes, which we pray improve soon. Trauma of breaking the ankle, surgery, anesthesia, pain meds and ALL THE CHANGES including having to go into a wheelchair and special boot until the broken ankle mended enough to give him more mobility again. Soooo much had already been taken away from this dear kind man I forever proud to call "Daddy", that something in him seemed to just "crack" when ALL THESE NEW CHANGES were happening to him and all around him. He must feel the anxiety of all of us, his family, which I know does not help at all, but it is so difficult for all of us to adjust.

I TRULY LOOK FORWARD TO NEXT THURDAY'S NEUROLOGIST APPT AND HOPEFULLY SOME BREAKTHROUGHS. Hoping some adjusted prescriptions will help, and we too need someone who will go through his meds, natural and PD meds and everything else he takes. Would be so helpful, wouldn't it?!!

I hope to address a few things with his Neuro next week: 1-Is this lasting? 2-Does he need a psychiatrist to handle psychosis med? Counseling? 3-Can you sign papers allowing us to get some At Home Medical Care at least temporarily? He was supposed to start physical therapy for his ankle Friday, but it simply wasn't possible to get him there. We hope to get some Home Health help, especially for Physical Therapy.

I know your situation is different, but there are a few similarities, so thought I'd add our story. PLEASE KEEP US UPDATED. AND I WILL UPDATE YOU AND OUR GROUP AFTER NEXT THURSDAY.

Praying for our dads, God bless, Sandra