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.

Thanks for the extra information, and the link.

Here is a similar link, which has a bit more information about visual hallucinations. After you have clicked on this link, click on the link which says "EYE PROBLEMS YOU MAY EXPERIENCE".

Parkinson's UK - Eye problems

The clear message seems to be that the vision problem(s) you are having could well be caused by PD, and that PD professionals should be well aware of this. I really don't understand why you are having so much trouble getting appropriate responses from the PD professionals you have consulted.

[Treatment of Convergence Insufficiency
Treatments for CI can be categorized as active or passive:

Active treatment: A multi-site randomized clinical trial funded by the National Eye Insitute has proven that the best treatment for convergence insufficiency is supervised vision therapy in a clinical office with home reinforcement (15 minutes of prescribed vision exercises done in the home five days per week). The scientific study showed that children responded quickly to this treatment protocol...75% achieved either full correction of their vision or saw marked improvements within 12 weeks.8

Passive treatment: Prismatic (prism) eyeglasses can be prescribed to decrease some of the symptoms. Although prism eyeglasses can relieve symptoms, they are not a "cure" and the patient typically remains dependent on the prism lenses. In addition, adaptation problems can lead to the need for stronger prescriptions in the future. Scientific research as well as optometric and ophthalmological textbooks agree that the primary treatment of convergence insufficiency should be vision therapy.1]
PARENTS, TEACHERS, STUDENTS, CHILDREN: What is Convergence Insufficiency Disorder? Eyestrain with reading or close work, blurred vision, blurry eyesight, exophoria, double vision, problems with near vision or seeing up close, headaches, exophoric.

Jazziecat,

Looking at your information again, I noticed that in your post of 09-09-2013, your list of vision problems does not include visual/optical hallucinations. This is first mentioned as a problem in your post of 11-11-2015.

I'm wondering whether you may have increased your levodopa dosage between these two dates? You are only on a relatively small dosage now (one 25/125 tablet 4 times per day), but I think there is still a small chance that this might be the cause. Can you provide more information on what dosage you started on (and when), and then how (and when) you increased the dosage to reach the level you are currently on?

Jeff

Jazziecat,

To get a rough idea of whether your visual problems are possibly caused by too much or too little levodopa, or are not connected in any way with PD, ask yourself the following question:

Are your visual problems linked to your place in the drug cycle?

You start with low dopamine levels. You take a pill and levodopa levels rise, reaching a maximum after about a hour and then halve about every 90 minutes, until eventually you are back to your original levels. In that time you go from "off" to "on" and back to "off" again. So, if there's no difference over the cycle, it suggests the vision problems are unrelated to PD. If they are worse when you are "off", it suggests that a higher dose may help. Finally, if they are worse when you are "on", it suggests that it is a side effect of the levodopa.

John

Once again, thank all of you for trying to help.

Jo*mar. I know of an optometrist who works with children and their visual problems. It is very costly and not covered by my insurance. Plus I don't drive any more and transport each time would be $40.00. I am retired living on SS. Several years ago I got binocular glasses with prisms. It did correct the double vision but because of the eye movement difficulties, the glasses were of limited value. I put a link to a photo taken of me with the glasses. (oh gosh but I have aged a lot since then). (Just as a side note, the photo is posted on a website that I started back in 2002 so it's a safe site.)

Telescopic Eyeglasses for Macular Degeneration in Off Topic Forum

The glasses I now have do have prisms for the distance part only which is why I still wear them occasionaly. Doesn't help for close up.

Jeff, my levadopa was increased from 3x to 4x a few years ago. I don't have any records of when that happened. The neurologist has since fled and gone, as has my next neuro, so records are somewhere hidden. (seems doctors leave this town all the time)

John, I have to do some thinking about your post. I've never paid attention to off or on periods. I'm going to try and see if I can keep track for a few days. You have given me something new to look into.

Carole

Carole,

I think those records are no longer needed. Just carry out your plan over the next couple of days to observe how your vision problems vary (or not) over the course of the drug cycle.

Jeff

I've just been alerted to another good webpage dealing with hallucinations. It describes a fairly comprehensive three-step process.

What Are the Treatment Options for Hallucinations and Delusions? | National Parkinson Foundation

(hat tip to park_bear at HU for the link)

Thank you so much Jeff for that excellent link. I have it printed out and will be taking it with me when I (finally) get to see new neurologist in two weeks.

Carole

8 Things You Should Know About Parkinson's Disease and Psychosis
 

Some additional information about PD psychosis

Facts About Parkinson’s Disease and Psychosis | Everyday Health

Thank you tupelo3. Another very helpful article for me to use.

Carole,

How did it go when you tried John's suggestion of observing how your vision problems vary (or don't vary) over the course of the drug cycle?

Another thing you could try (as an experiment) is to change from taking one 25/125 tablet four times a day, to taking half a 25/125 tablet eight times a day. It might be a bit onerous, but it would just be for a few days. You could set up eight alarms on your mobile phone to remind you when to take the half tablet.

Jeff

So far I haven't noticed off/on times. It's hard to determine because dry eye syndrome is often found in PD people and that alone makes it stressful.

Might be a good suggestion about cutting the pills in half but I will wait until next week before making any further changes. LOL, one more thing to conquer....cutting the pills by someone who can't see the pill cutter clearly along with shaking right hand. I'll give it a try if the neuro agrees.

If I've understood you correctly, you are saying that you haven't been able to detect any changes in the "flashing stars/lights" over the course of the drug cycle (or over the course of the day or night).

Is that correct?

Jeff,

It's all so weird and so complicated and very hard to explain.


When I first open my eyes in the morning, my white ceiling is covered with large blue dots as well as the flashing stars. Later those dots shrink to pin size. I never see a solid color any more. The dots are ALWAYS there but I have learned to mostly ignore them. When my eyes are extra stressed, a different pattern appears...it is as if I am looking through a cyclone fence....but this is not constant, but the flashing stars are.

If I see a truck going by, I can't see what company it is even though the letters may be huge. If it's a U-Haul truck for instance, I'll see the U-. Then my eyes adjust and I go to the next letter or two. Obviously I am reading here, so I can see. But my eyes can't adjust to take in the entire name. Same with people's tee shirts. I can make out one or two letters at a time, but if the person moves. I am lost as to what was printed on the shirt.

I don't drive but depend on cabs. I can barely make out if it's my cab or a car because the glare stops me from seeing, or if it gets dark, the street lights glare too. My eyes don't adjust and that's why I think it's a PD problem more than macular degeneration.

How can I read regular print but can't see what's on a big truck or car?

Thanks for all the extra information.

Being able to read print, but not being able to read what is on the side of a truck, seems to me like macular degeneration. My understanding of macular degeneration (admittedly limited) is that you can't see what is in the centre of your viewing area, only what is at the edges. The words written on the truck might be too big to fit into the edge of your viewing area. Do you have macular degeneration in both eyes?

The fact that the blue dots appear on the ceiling when you open your eyes each morning doesn't seem to me like psychosis. My understanding of psychosis (admittedly limited) is that it is not something predictable like that.

You said in a previous post that you can still see the "flashing stars/lights" when you close your eyes. My guess (and that's all it is) is that this might be a problem with the optic nerve or the area of the brain which receives signals from the optic nerve. I would suggest that you see an ophthalmologist, but I think you said previously that you've seen one or two of them already.

The experiment with the half tablets might still be worth doing. I can't see it doing any harm, at least. If the effectiveness of your medication is influenced by when you eat, you may have to adjust your meal times for those few days.

Why do people come to forums such as this? All of us are searching to improve our lives or those who we care for. We are reaching out hoping some one out there will have an answer. I don't know if my problems are caused by PD or macular or optic nerve. I haven't gotten much help from the medical professionals so far, but maybe someone has an answer.

I have a second condition going on. I went through an endoscopy and it was determined that everything was OK yet I get crippling abdominal pain, mostly after eating. My daughter came up through an internet search with a pretty close description of what's happening. I spoke to the GE doctor who did the endoscope and his answer is "that's too sophistcated for our practice". No suggestions as to what to do. PCP doesn't know. I get some relief using a heating pad or if it's really bad I use marijuana occasionally.

Let me explain a little more of who I am. I gave you a brief look into the discussion forum I started back in 2002. I'm not very active any more because the information needed is already there. It is a warning site for people who are considering a paricular surgery who are not given the proper information by their surgeons of potential and irreversable side effects. The surgery is performed for people with hyperhidrosis (excessive sweat) or blushing. (I have not had the surgery but do have hyperhidrosis) The surgery involves cutting or clamping the autonomic nervous system along the spine anywhere from T1 to T5. It is mostly performed on young people but some surgeons push to have it done as young as 7 years old. Undoubtedly the surgery is sometimes successful but I have heard from thousands worldwide of being left with devastating, life-changing conditions. Imagine a young man suddenly left impotent. You no longer sweat from the nipple line up...young athletes who can no longer cool down because their heads don't sweat or losing your hair and eyebrows and eyelashes because your head is so dry and your face wrinkles. Your hands are now dry but your body is soaked with compensatory sweat, but you are considered cured. Compensatory Sweat (CS) / Compensatory Hyperhidrosis (CH) in Photo Album Forum

I could go on and on with more devastating side effects. What message can I give these young people:? YOU CAN'T REVERSE WHAT HAS BEEN DONE BUT TRY TO IMPROVE OR MINIMIZE THE CONDITIONS BY RESEARCH AND REACH OUT TO OTHERS SUFFERING SIMILAR CONDITIONS.

This is what I am trying to do myself. I am reaching out to try and improve the conditions I am living with. I found the Nuplazid website and it gave me HOPE. The answers I got here gave me a better understanding that in spite of the website's promises, people know what might be real.

I thank you all for listening and apologize for using up so much space here. Just writing it out has helped. I am not ready to sit in a rocking chair for the rest of my life. There is too much life inside of me yet. Maybe, probably, nothing will get better but trying to improve my life keeps me going.

Carole

Carole,

I don't understand why you say "probably nothing will get better". As a direct result of your initiation of this thread, and your significant contributions to it, you are now much better prepared for your first consultation with your new neurologist next week.

You need to go into that consultation with a clear idea in your mind of what you wish to achieve from the consultation. You need to make it clear to the neuro how important your vision problems are to you, and that you are determined to find a way to improve your vision. You need to explain to the neuro that you have a plan for this, and that the first step in that plan is to determine, with his/her help, whether one aspect of your vision problems is PD related or PD-medication related.

If your stars/lights/dots problem is not related to either PD itself or PD medication, the second step in the process is to consult another specialist to continue the search for an answer. In this event, the neuro can help by recommending the type of specialist to consult next. Failing that, your GP is the one to report back to and ask for a referral to an appropriate specialist.

In other words, I don't think you can just print out the 3-step-process webpage and give/show it to the neuro. There won't be time for that during the consultation. You need to use it as a basis for your own process.

The whole purpose of my involvement in this thread is to help you prepare for consultations such as the one next week with your new neurologist, and any subsequent consultations with other specialists.

Best wishes for your consultation next week.

Jeff

I finally got to see my new neurologist today and to my surprise, we are trying a completely unexpected approach.

First of all, he does not think I am experiencing visual hallucinations due to PD. Not to say that I am wrong about seeing flashing stars/lights, just that it's not due to Parkinson's. What may be the problem is the carbidopa/levadopa. What he is having me do is to reduce the carbidopa gradually over the next few weeks until it is eliminated while increasing the amitriptylene back to .75 mg per day. He also believed it is possible that I don't have PD but Essential Tremors, for which he has other options to try. But first we will see how I do with the new regimen.

He was pleased that I had weaned myself off the Selegiline. It could very well be the reason why I developed high blood pressure (today was very normal for me 124/74). He stopped prescribing that med years ago when it didn't prove as effective as advertised. I absolutely did not want to be on the BP medicine and had stopped taking it with my PCP's permission, thus getting rid of several side effects that had developed.

I am very pleased with my new doctor. He is someone willing to work along with me to find a solution.

It's great to hear that the consultation with your new neurologist went well.

When you say "reduce the carbidopa gradually over the next few weeks until it is eliminated", do you mean carbidopa/levodopa? If so, it sounds like a good idea.

Yes, carbidopa/levadopa. Sorry, I was lazy to type out the entire name.

Just a note re Selegiline which I was on for 2 years and recently stopped taking. My blood pressure was labile - all over the place. It has settled now I have stopped the Selegiline. I think it was the combination of Selegiline with nortriptylline which i introduced a year ago that was the culprit. There is a warning combining these meds biut I know others who do it successfully.
Btw Selegiline is not the same as Azilect though similar. In higher doses Selegiline is an anti depressent. I miss feel good factor it gave me.

I am back on Selegiline, but this time with some dietary restrictions. I will avoid most cheese, soy products and processed meats like sausage, pepperoni, etc. It's been a little over a week and I am feeling so much better again. The other adjustments to my meds just didn't work for me at all (mainly propranol).

None of the adjustments helped with reducing the flashing stars that are always there. Blurred vision improved when the carbiddopa/levado was reduced but too many other things happened that made it impossible to continue this way.

Jazzcat
So you needed the levadopa, I guess you are back with the PD diagnosis rather than essential tremor.
From my reading I have noticed that the dietary recommendations/restrictions are usually for those taking more than 10mg Selegiline / day. I would think of equal or more importance is the potential interaction between Selegiline and Amytriptyline which can raise BP but again if Selegiline doses are low it is usually OK. (I miss my morning amphetamine boost from Selegiline but I dont miss the wild BP fluctuations.)

I have had a couple of very brief incidences of flashing lights and stars in front of my eyes in the morning, they disappeared as soon as they came. They were quite different from the visual hallucinations I have had from PD meds, particulary Amantadine. These always happen when my eyes are open, eg I saw a car crashed in our front garden which when I looked again wasnt there.