Skip to Accessibility Tools Skip to Content Skip to Footer
Person

Demystifying Parkinson’s Hallucinations: When to Seek Medical Attention

The word “hallucination” can evoke as much or greater fear than the word “dyskenesia” among those of us with Parkinson’s disease (PD).

The mere mention seems almost taboo for fear of being labeled as “crazy,” “demented,” or “unstable.” When the drug Nuplazid (pimavanserin) was first introduced as the only FDA approved treatment for PD psychosis and hallucinations, the frightening content of the ad seemed to fuel the fear and create a greater stigma within the community. Fortunately, the company (Acadia) took heed and redid the commercial – depicting hallucinations as a much less dramatic and frightening symptom, which is the case for most of us who have experienced hallucinations.

Although this particular phenomenon of Parkinson’s does continue to intrigue me as a clinician, scientist, and religious person. Sometimes, it raises more questions than answers for me. Yet, in my experience as a physician as well as a patient, I have found hallucinations to be rather benign, sometimes even amusing. Typically, these common occurrences which can present at any time during the evolution of the disease are not at all frightening to people with PD, who are fully aware that these incidences are not real.

So why do people affected by Parkinson’s fear hallucinations?

I think fear stems from the terrifying feeling the commercial depicted in people with Parkinson’s. The commercial seemed to strike a chord within the PD community. Additionally, there is an underlying fear of having hallucinations occur, especially in those people with Parkinson’s who also suffer from dementia. Hallucinations are more common in those who have dementia. Although, it is important to note that people with Parkinson’s that do not have dementia can also experience hallucinations.

5 types of hallucinations

In essence, people with PD may have hallucinations affecting any of the 5 senses.

Visual hallucinations

Visual hallucinations tend to be the most common of all hallucinations, occurring in up to 40 percent of those with PD. These visual disturbances tend to be in the form of children or animals. Usually, these sightings cause no distress to most people. They seem fully aware that the hallucinations are not real, so they do not engage with the hallucination.

Routinely, it is the family or caregiver that becomes concerned and mentions to the doctor that ‘mom, ‘dad’ or ‘spouse’ are speaking to someone that is not seen by anyone else. This occurs because people have lost sense of reality and begin to engage and at times be frightened by the hallucinations. But, in my experience, unless people begin to interact with the hallucinations, become frightened by them, or believe they are real, no specific treatment is recommended. In fact, the family may not even be aware this is happening.

Olfactory & gustatory hallucinations

Olfactory (smell) hallucinations typically only last a few seconds. Others may have gustatory (taste) hallucinations, meaning they can suddenly taste something as real as having taken a bite of a specific food. A sudden vivid taste or smell can take place alone or simultaneously.

These two types of hallucinations may occur together since olfactory nerves are tied closely to the taste buds. I have experienced these kinds of hallucinations at the same time and as a single olfactory phenomena. My most recurrent olfactory hallucination is the smell of burnt tortilla in the house when no one has even used the stove or cooked.

I have only experienced one taste hallucination vividly while showering one day. As the water hit my face, I experienced a sudden sensation of having bitten into an extremely hot chile, which left a stinging sensation on my tongue as eating a hot pepper would. Interestingly, at the same time, I whiffed a strong aroma of hot chili peppers as if they had been shoved up my nose causing my nostrils to be on fire and my eyes to start tearing up. Of course, I was nowhere near any ingredients that would trigger this response. The heat on my tongue and nose was so profound that I went to the kitchen to put some salt on my tongue as I usually do when I get hot pepper on my face by accident. Although this only lasted a short time, I craved some hot salsa afterward!

Auditory & tactile hallucinations

Other less common types of hallucinations in people with Parkinson’s are of auditory (hearing) or tactile (touch) hallucinations. Auditory hallucinations are common in organic brain disease like tumors or strokes and are non-persecutory. However, when these happen they are more suggestive of mental illness like depression with psychotic features, bipolar disease, schizophrenia, and post-traumatic stress disorder.

People with Parkinson’s may hear footsteps nearby, feel like someone is near, or feel like someone is stroking their skin. These types of hallucinations are rare in people with Parkinson’s. These two types are more common with alcohol use or when taking other medications such as propranolol, stimulants, or antidepressants. However, tactile hallucinations appear to be a bit more common in Lewy body dementia compared to Parkinson’s.

What to do if you experience hallucinations?

Do not panic. Most are benign and do not require treatment. I have found over the years that visual hallucinations in a non-demented person with PD actually is an indicator of needing more levodopa rather than vice versa. But, if your loved one or you are getting afraid by the hallucinations or feeling as if they are real then it is time to seek immediate medical attention.

Talk to your doctor. Go over all medications and other medical problems such as seizures, depression, and other brain structure abnormalities.

Get evaluated for dementia. This also includes getting evaluated for Parkinson’s plus syndrome.

Look into medication as a treatment option. If there is a need for medication, there are a number of treatments available to help such as Nuplazid, Clozaril, and Seroquel, as well as medications for dementia such as Excelon. This is always a conversation you should have with your doctor first, so you can go over any risks and benefits with them prior to starting a new treatment regime.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Barnes J, David AS. (2001). Visual hallucinations in Parkinson's disease: A review and phenomenological survey. Journal of Neurology, Neurosurgery & Psychiatry;727-733. http://dx.doi.org/10.1136/jnnp.70.6.727
  2. Huizen, J. (Oct. 2017) What are tactile hallucinations? Medical News Today. -Legg, T.J review
  3. Waters, F. (Oct. 2010) Auditory hallucinations in psychiatric illness. Psychiatric Times. Vol. 27 (3).

Comments

  • gyndocal
    1 month ago

    I, too am a retired physician diagnosed at age 80 with “early PD.” I am also a therapeutic nihilist whose symptoms do not require treatment, and thus far use only diet and exercise to prevent progression. Brief visual hallucination s seem to be a past phenomenon. Imbalance and poor sleep seem to be my most impressive symptoms.

  • Maria De Leon author
    1 month ago

    gyndocal..so nice to meet all this fellow physicians. poor balance has plagued me in the past- i have found that water therapy in deep end helps tremendously for this problem if don’t want meds – however sleep problems is one of those pesky issues that plagues all of us with PD and don’t get any better without treatment – plus lack of sleep can predispose to greater risk of hallucinations ans even balance issues. i cant function without sleep – so sleep is a priority which i find that a good nights sleep also improves all my other pd symptoms. however, i have to take sleeping medications in order to rest. Some people do well with melatonin otc. good luck. Maria De Leon/author/patient advocate/moderator

  • Katherine1953
    1 month ago

    I had a (for me, as a former psychiatrist) fascinating experience last summer. I was at home, recovering from surgery with general anesthesia when I heard people whispering in the hall outside my door. I couldn’t hear what they were saying and in no way was it threatening. As I listened, I said to myself, “Oh, this is an auditory delusion! I guess it was caused by one of the meds they used during surgery + either my PD or one of my PD meds.” I enjoyed “eavesdropping, knowing what was going on. After an hour, the whispering subsided. Mulling it over, I realized that the same sort of whispering goes on all the time as members of a team discuss cases with the patient and/or other patients present. Perhaps my subconscious was reliving that. More recently, I heard the persistent mewing of a cat, but there was never a cat outside. I got to the point where I actually looked in the closets, thinking perhaps a cat had sneaked in (that happened once, long ago). Nada. Was I hallucinating again? One night it was SO loud that I was sure it was inside (if it was “real”) — nevertheless, I looked outside to see if a cat was out there. Sure enough: I finally found the culprit, skulking around the bird feeder. As soon as it heard the door begin to open, it was off so quickly that I barely got a glimpse. But it was nice to know it was not another hallucination!

  • Maria De Leon author
    1 month ago

    Katherine1953..thank you for sharing your experiences- sometimes these things can be so subtle you are not sure then again others maybe experiencing same thing so not all in our heads and not all related to PD. Once in the middle of the night I awoke because I was smelling burnt tortillas so i walked to the kitchen to make sure stove was not on then comes my nephew from upstairs and he says to me i smelled burnt tortillas are you cooking? so we both had a good laughed and went back to bed. Maria De Leon patient advocate/author/moderator

  • Dan Glass moderator
    1 month ago

    Thanks for that valuable and intriguing information. I would hope that if I had a taste sensation it would be something like chocolate iced donuts or a cheese steak instead!

    Have a great day and keep educating and advocating.

  • Maria De Leon author
    1 month ago

    Dan Glass- thank you for all your wonderful comments and i absolutely agree chocolate hallucinations in any form would be the bomb! have terrific day and keep doing what you do being wonderful. Maria De Leon/author/moderator/patient advocate

  • Poll