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 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.
Have you or a loved one ever tried speech therapy?