Anyone taking Nuplazid? (PD Visual Hallucinations)
 

I am severly affected by visual hallucinations (constant flashing stars/lights). Neurologist suggested Charles Bonnet Syndrome but had no solutions to offer. I will be seeing a new neurologist next month and I want to discuss trying this med called Nuplazid. Supposedly visual hallucinations are part of PD psychosis.

I am really struggling with vision loss (also have Macular Degeneration).

Checked all my medications and they all seem to list blurry vision and hallucinations as a possible side effect.

Is anyone else experiencing similar?

By coincidence, earlier today I was alerted to an article on the Medscape website titled "Treatment of Parkinson's Disease Psychosis." The article contains a section titled "Antipsychotic Treatment" which has several paragraphs on Pimavanserin (Nuplazid). Hallucinations are mentioned, but not visual hallucinations specifically.

In case this article is of interest, I've included a link to the Medscape homepage. Just type PDP in the search box. The article should be near the top of the list.

Unfortunately, you will have to register to view the article. Fortunately, registration is free.

Latest Medical News, Clinical Trials, Guidelines – Today on Medscape

Wife took Nuplazid for 3 months
 

First, are you sure you are hallucinating or are you really having vision problems? How long have you had PD? Nuplazid was developed as an anti-psychotic for PD (meaning it does not make PD worse as most anti-psychotics do) and is expensive.

My wife has taken Nuplazid for 3 months and stopped a month ago. When she recently saw her neuro and psychiatrist a month ago, she was obviously hallucinating (seeing people, delusions) and they discontinued Nuplazid but increased her Geodon. My wife's PD and hallucinations seem somewhat worse now. That's why I asked about marijuana in a earlier post.

Meds or the combo of meds could be contributing.
Body may not be processing them as well as before.. might start causing problems..
As Drs if there are any non crucial Meds you can stop temporarily as a test to see if they are a factor?

My dad has stopped some meds that were not really giving any benefits and must have been the main cause of his hallucinating, seeing people, delusions.
Those are very rare now.

Vision - maybe ocular migraines with aura?? - [Ocular migraines can develop with or without the accompanying pain of a classic migraine. During an ocular migraine, or migraine with aura, you may see flashing or shimmering lights, zigzagging lines, or stars. Some people describe psychedelic images. It may also cause blind spots in your field of vision.] What Causes Ocular Migraines

We're trying it
 

We are in a two-month trial period for this drug, because we were told it takes two months to see if it will help. We were told that it reduces serotonin, so that the ratio between dopamine (which has been reduced because of PD) and serotonin is closer to what it would be normally. It supposedly does not make PD symptoms worse, but I noticed one of the side effects is hallucinations-the very thing it is supposed to help with. How can one ever tell what is what when a side effect is also a symptom the drug is supposed to alleviate? Ugh.

And, as already mentioned, the drug is horrifically expensive, a whole other issue entirely.

Thanks everyone for your input. I really appreciate it.

I was able to get to the Medscape article, thanks for making it easy for me. I read about 3/4 but had to stop as I was getting overloaded with TMI.

I did a quick search on Ocular Migrains but it doesn't seem to fit, as far as I can tell.

Interesting ashley that your wife was taken off after a trial period. lurkingforacure I hope you can keep us updated on any progress/negatives you find. If the meds are very expensive, I probably won't go for it.

I was diagnosed about 8 years ago. Probably a couple of years after the tremors in my arm started. I don't have a lot of faith in doctors so I am slow to go to them. When I think back, my double vision started when I was 50 and no cause was mentioned. I am wondering if perhaps that was the starting point of PD.

Jazziecat,

Others can correct me if I'm wrong (and I hope they do), but my idea of a visual hallucination caused by psychosis is, say, you see someone coming towards you with an axe in his hand, and there is actually no one there. The symptoms you are describing in these posts (and your previous posts) seem much more like those I would associate with vision problems, possibly caused by something other than psychosis.

If you are happy to share the information, perhaps you could tell us what medications you are taking (including doses and times). Perhaps someone will spot a possible problem there.

Jeff

The reason why I believe the flashing lights/stars are Parkinson's related rather than a visual problem is that even if I close my eyes, I still see the flashing stars. None of the doctors, optholmologists, neuro-optholmologists I have seen, none of them have attempted to look into the causes of my problem nor tried to adjust medications, etc. So I am left with trying to figure out things by myself (and hopefully someone here will know what I am going through. I know a common answer would be to find better doctors but I'm kind of stuck working with who I have. Just to find a new neurologist has taken four months and getting a primary care doctor was nearly no options left but the one I got...nice doctor but just an ordinary family physician.

At present, here is my medications:
Carbidopa/levadopa 25-125 mg (4x)
Amitriptylene .25 mg (1x)

In my attempt to see if medications were the problem, I have eliminated the following:
Selegiline 5 mg. (2x). I weaned myself off of this mid-January
Amitriptylene (reduced from .75 mg to .25 mg (I have taken this 30 years)
Fish Oil, B-12, eye vitamin, Centrum Silver

Nothing changed when I eliminated the above for 3 weeks, so I have started taking the vitamins again. I also stopped Nexium for severe heartburn but switched now to Zantac.

I was temporarly put on Losartan for high blood pressure (never had a BP problem before). When I started experiencing headaches, constantly dripping nose, backache, I complained to my doctor. Saw his PA, she had me stop the Losartan, check my BP once a day for 3 weeks. BP was up and down and in-between. During last visit BP was 118/78 (kind of my normal). So I have eliminated Losartan from the mix.

Please don't hesitate to ask me any questions if needed to figure out what's going on. I do have an abdominal issue going on but am not taking anything for it. This is another thing happening that the doctors have no clue what it is. I had an endoscopy done and everything came back normal other than a hital hernia. Based only on internet search, my daughter thinks it is a condition called Dunbar Syndrome...but we agreed to hold off with this problem until after seeing neurologist.

Thanks very much.

Thanks for the substantial response.

I can't see any specific problem regarding your medications, but maybe someone else might.

As an additional aid to anyone else who might like to try to help you with your problem(s), I've made a short list of what you've said in your various posts, specifically regarding your vision problem(s).

04-16-2017: "even if I close my eyes, I still see the flashing stars"

04-14-2017: "I can read on the computer as long as it is in reverse video. Most people think that bigger is better, but that's not true in my case."

04-14-2017: "I saw a neuro-opthomologist and she diagnosed me as having Convergence Insufficiency (double vision) but offered no help."

04-14-2017: "I am severly affected by visual hallucinations (constant flashing stars/lights). Neurologist suggested Charles Bonnet Syndrome but had no solutions to offer."

11-11-2015: "I was diagnosed with Macular 20 years ago. I am struggling with low vision. I believe the PD has made my eyesight worse.;..double vision plus my eyes don't focus normally plus optical hallucinations."

09-09-2013: "I have multiple conditions which have taken away my vision and photophobia is on the list (macular degeneration, double vision, color blindness, photophobia, floaters). I dare not step out of my house without sunglasses on."

Thanks Jeffrey for putting it all together. Here's a link to just one article about PD and vision.
Vision Changes | Parkinson's Disease Foundation (PDF)

I appreciate that someone is at least listening and trying to help. I know I am whining, so please bear with me while I whine some more...

What I am trying to do is maintain as much independence as possible. I am a widow of 24 years so I live alone with two cats in a single wide mobile home. I could never afford living in assistant living, nor would I ever do well in such an environment.

How I believe PD affects my day to day living (as well as dealing with Macular Degeneration). I will see a spot on the floor and without moving, it disappears because my eyes have jumped. It takes me 10 minutes to plug something in due to the double vision and flashing lights getting in the way. I have enough balance so I still bowl. I can see the pins but I can't follow the ball down the alley. I go to the movies but I can't follow the action on the screen. I more or less listen and my friends tell me what is going on. Tv watching is similar....I mostly depend on talk shows because I can't follow the actions. I can't see photos because I have lost depth perception. I can't read my mail because it's often in color or too busy with pictures (yet as you can tell I can read on the computer). One of the worst things to deal with is new packaging. I have a hummingbird feeder. I know where it is but can't see it until my eyes move together to find it and then I can see it. My eyes take a long time to adjust going from light to dark and vice versa, which makes glare a big problem. The list goes on and on.

I apologize for this long whine but it helps just to write it out and hope someone will understand. Believe it or not, I'm usualy not a complainer. Just trying to hang in as long as I can.