Delusions

[Health1961]

Husband has started seeing threads, webs, people in our house. Next neuro appt isn’t til February. Should I try to get an earlier appointment or do I just keep stating what is and is not fact. I feel so alone with this new development as he’s so logical in most aspects. Can’t afford Nuplazid if that’s the only option.

[justhavefun2]

I am so sad for your news. 😢 I haven’t experienced that, so no thoughts to suggest. Just wanted to let you know someone is listening out here.

[Health1961 in reply to justhavefun2]

Thank you. Just being able to express my fears is such a help.

[danfitz]

Sorry to hear this. I think you should consider trying to get an earlier appointment. Best wishes.

[danfitz in reply to danfitz]

I googled for meds:

Today, there are three antipsychotic medications considered relatively safe for people with PD: quetiapine (Seroquel®), clozapine (Clozaril®) and the newest agent, pimavanserin (Nuplazid®). They cause limited worsening of PD while treating hallucinations and delusions.

[park_bear]

Nuplazid– Is not such a great option anyway. See: healthunlocked.com/parkinso...

[Hidden]

Hi health1961.

Your husband is suffering from a Parkinson’s related condition called hallucinations. The typical medication used is Seroquel, which has a generic name of Quetiapine.

Please do ask for an earlier appointment and go to a psychiatrist. Normally, a Psychiatrist treats the condition, but some neurologists and Movement Disorders Specialist (MDS) are also trained to treat the associated mental conditions of Parkinson’s.

Ask for Seroquel which is powerful, cheap and incredibly effective. I was on it and it saved my life. It will make him very sleepy. I hope that this helps.

Here are some links for you to follow and read up on the medicine.

ncbi.nlm.nih.gov/pmc/articl...

nami.org/Learn-More/Treatme...

[MarionP in reply to Hidden]

On the seroquel: Dicey, but if you do try it, start very low dose and see, ask prescriber to prescribe with liberal patient options, including very low dose pills so that if you want to increase gradually, you can cut them and add them very very slowly, so you can titrate up very slowly and see, then up a tit more and see. And check out the comments on the nuplazid below. Again, very very VERY gradual via patient adjustments written into doctor's prescription and manner of dispensation pill size. Nuplazid seems to have better response to troubling hallucinations but you want to bring anything along the anti-psychotic line up slowly, patiently.

[Kevin51]

Sorry to hear - there is a lot of useful info on this site

epda.eu.com/about-parkinson...

[Hidden]

Hi, health1961. I have edited my first response to your question will more information. I pray for your husband and you and hope that he finds the right help.

[Rosenmu]

I had a few occasions of seeing things too, but my diet and mucuna dose has changed, so all is good now. I've also been working to fluctuate my B1 dosage, taking less than I was. I was also heavily into a detox at that time, slowed it down. Mucuna was raised to 1800mg a day and I'm now on Keto for 2 months, hoping the Ketones are helping as well. The stuff I was seeing was disturbing and unexpected.

[PDSux]

Yes! Get an earlier appointment. Seroquel did nothing for my husband and the hallucinations drove us all crazy. My husband started calling the police on the ones in the garage telling the police they were stealing. He started in NuPlazid two weeks ago and already seeing dramatic improvements! There are ways of getting help with NuPlazid. Get an earlier appointment and check out NuPlazid Connect either one the web or [phone]. They will work with your Doctor to get the medication Free for 10 days and then hopefully an affordable deductible after that. Good luck! It’s a terrible experience, I know!

[Health1961 in reply to PDSux]

I will look into the discounts in case neuro wants to try. So far today DH has had no issues so maybe this will not be an every day situation.

[Hidden]

I’m sorry to hear your husband is experiencing this as my husband is also having hallucinations/delusions. May I ask how long your husband has had Parkinson’s? The reason I ask is the hallucinations can go with Parkinson’s for some. My husband has had Parkinson’s for 6 years and started to experience them last year. At first our neurologist thought it may be drug induced, as that can cause it along with dehydration or a UTI. After months of trying everything he was still getting them, followed by a touch of dementia. They did prescribe Seroquel to him! It was terrible for him. Knocked him right out. We tried reducing the pill and still the same so we quit it. Nothing has helped him so I’ve come to realize this is our new normal. By the way Nuplazid that has been mentioned is not available where we live so I wish you and your husband the best in finding a solution!

[Health1961 in reply to Hidden]

I suspected PD was starting to show about three years ago when he began to have problems with executive function skills. As time went on I noticed gait issues and about a year ago we had a confirmed diagnosis from a DATScan. Downward progress has seemed very fast as he has less feeling in extremities and thus balance issues. Definite cognitive issues in some aspects but not in all ways.

[Hidden]

So is he on any medication prescribed by a specialist?

[Health1961 in reply to Hidden]

Yes. Memantine 10 mg twice daily, amantadine 100 mg twice daily, carbidopa/levodopa25/100 mg 4x daily. The B1 therapy is not supported by my neuro who is with a Florida center of excellence.

[Sylphide]

My husband has hallucinations and delusions. He is 72 and was diagnosed 6 years ago with PD. We watched the "Regain Your Brain" programs and David Perlmutter. We have been changing our diet, our daily living routines, adding dietary supplements, etc. After six weeks I am seeing quite an improvement. He is falling asleep less easily. He knows who I am and has agreed to me being one person, not the two he was seeing before. He can set the table for meals with the items mostly in the right locations on the table. I have a home care worker daily in the morning to get him up. His specialist recommends no further medication changes for him as he is on max dosage (Modopar). There are still some delusions but he is much more lively and initiates real conversations sometimes. A week or two ago there was a conversation about some paranoid beliefs about me but it has disappeared. The delusional thinking can be scary but when you remember it's the disease and just play along with it it gets easier, I find. I am lucky in that my husband has always been a kind and gentle person. I imagine it could be much more difficult otherwise. Have you seen the book "Contented Dementia" by Oliver James? Or "Creating Moments of Joy" by Jolene Brackey? These have helped me a lot.

[soup]

If the hallucinations have only recently begun, the first things to check is hydration and infection. Sudden deterioration can be due to those factors.

[Health1961 in reply to soup]

I will definitely be asking about those tests ASAP.

[soup in reply to Health1961]

The infection can be checked out by your family doctor service but don't even risk dehydration, start pouring drinks if you think it might be one of the factors.

[sleezy]

I had hallucinations caused mostly by all the medicines I was taking. I had to go to the hospital because of severe balance problems at the same time (I couldn't walk upright unless a person was on each side of me holding me up.) I only take the Parkinson's medicine, anti-nausea medicine and blood pressure medicine plus a blood thinner now. I was over medicated before due to trying to offset the insomnia caused by the Parkinson's. (I was taking melatonin and an over-the-counter mild sleeping pill.) I still have problems getting enough sleep, but I don't have halluciinations and I can walk OK, though I use a cane when I go somewhere besides in my own house.

[daughter-Advocate in reply to sleezy]

so happy to hear you don't have anymore hallucinations! do you. mind sharing which medication it was that was causing them and how did you adjust the dose/discontinue them?

how are you doing now?

[soup]

UTI or chest infection should be taken checked by the family doctor today. From your comment about meds costs I guess you are in the USA.

If your family member is not drinking 2 litres of non-caffeinated liquids a day, doing so may help his bowel health and help eliminate dehydration as a cause of extra symptoms.