Questions about Catatonia
What should people know when Catatonia is suspected and/or diagnosed? Guidance from family members who have been through it
Our founding board members are on the other side of the journey through Catatonia with their loved ones. Looking back, there are some important things we learned along the way and wish we knew when we started on our journeys. We'd like to share some of them with you:
1
Not all Catatonia looks the same
Catatonia is a syndrome that expresses in a variety of ways ranging from immobility and stupor to delirium and regression to severe aggression and self-injurious behavior. The common thread in each of these expressions is that (i) the symptoms come on fairly suddenly, (ii) they are significantly different from the person’s normal state/baseline and (iii) many of the symptoms are described in the Bush-Francis Catatonia Rating Scale.
2
Lorazepam (Ativan) is remarkably effective
Lorazepam is remarkably effective in diagnosing Catatonia using the Lorazepam Challenge. The Lorazepam Challenge can be done in the hospital or at home but should be done under the supervision of healthcare providers with expertise in Catatonia.
Lorazepam is remarkably effective in treating the symptoms of Catatonia. It is typically more effective in high doses.
3
ECT has a very high cure rate
ECT has an 80 to 100 percent cure rate in Catatonia. In many cases, when the patient has received optimal treatment, maintenance treatment beyond the initial course of treatment (which includes continuation treatment) is not required.
Agitated catatonia may require ongoing maintenance treatment to keep the symptoms from returning.
While there may be side effects from ECT (for example - memory loss during the period of the symptoms of Catatonia and ECT treatment), each of the board members and their loved ones feel it was worth the tradeoff to be cured.
ECT is a magical treatment for Catatonia.
4
ECT is NOT what was shown in the movie One Flew Over the Cuckoo's Nest
ECT has a negative stigma as the result of how it's been depicted in the media and entertainment industry. Most people think about One Flew Over the Cuckoo's Nest when they think of ECT. The movie showed ECT being used as a punishment for "bad behavior" with the patient being held down against his will while experiencing a violent seizure. ECT today requires consent and the treatment has been modified to ensure the patient is comfortable and safe. One of our board members observed the procedure in the ECT suite and described it as a gentle and safe process.
5
Your loved one is still in there
When your loved one is experiencing the symptoms of Catatonia, it’s hard to hold onto hope that it's not a permanent condition. It appears as though the person you knew before disappeared. Each of our loved ones returned to their original state and in some cases, even better than before. It was amazing to have them returned to us.
6
Your loved one is not being obstinate
It may appear that your loved one is being intentionally obstinate, belligerent, noncompliant or aggressive. They are NOT. Their behaviors are the result of having Catatonia and they can’t help it. You may get frustrated with them. That’s understandable. Try to remember that it’s not their fault and they can’t stop the behavior without proper treatment.
7
Having your family's healthcare wishes planned out will save you in the long run
It’s important to plan for circumstances in which family members are unable to care for or make decisions for themselves. Everyone who reaches the age of majority should designate a medical power of attorney. Because ECT is typically excluded from a treatment that a guardian can consent to, it should be specifically addressed in a medical power of attorney, if possible.
8
You know your loved one best
Remember, you know your loved one better than anyone else. You know what their baseline is, you know when the symptoms began and you know what symptoms are new. Healthcare providers may believe the delusional statements your loved one is making and you need to stay strong when they do. Healthcare providers may also believe that your loved one is intentionally acting the way they are and you need to assure them that this isn’t true.
Commonly Asked Questions
The Commonly Asked Questions below provide information that may be helpful to understand when faced with a loved one who is showing some symptoms of Catatonia. The information reflects the experiences of The Catatonia Foundation founding board members only. See Disclaimer on Professional Advice.
The lived experiences of The Catatonia Foundation founding board members were that it took weeks – even months – for their loved ones to receive an appropriate Catatonia diagnosis and proper treatment, which wasted precious time and caused unnecessary suffering. Each board member had to strongly advocate to get a diagnosis and proper treatment for their loved one; our goal is to provide you with information to help advocate for the necessary testing to either diagnose, or rule out, Catatonia. Our hope is to help others so they don’t have to struggle as we did.
Each person’s medical situation is unique, and not all of the information provided in the Commonly Asked Questions will be helpful or relevant. However, we want to provide information so that proper diagnosis can be made and people suffering from this devastating, yet highly curable, condition can receive the treatment they need.
Commonly Asked Questions:
Resources for patients and caregivers
The following books provide insight from patients and caregivers as well as relevant information from physicians:
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Each Day I like it Better: Autism, ECT and the Treatment of Our Most Impaired Children, Amy S.F. Lutz Vanderbilt University Press (2014)
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Brain on Fire (10th Anniversary Edition): My Month of Madness, Susanna Cahalan Simon and Schuster (2013)
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Shocked: Insider Stores about Electroconvulsive Therapy, G Kirov (Independently Published) (2020)
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Will I Ever Be the Same Again? Transforming the Face of ECT (Shock Therapy), C Kivier Three Gem Publishing (2010)
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Shock: The Healing Power of Electroconvulsive Therapy, K Dukakis and Larry Tye (2007)
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The following articles are personal success stories with ECT (not necessarily for Catatonia):
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ECT for depression: Young woman finds hope through electroconvulsive therapy
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My Depression was Consuming Me. My Doctors Prescription? ECT. It Worked.
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The following videos provide patient perspectives on ECT:
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Our resources pages
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Our Resource Pages are a comprehensive library of many of the recent and relevant resources available.
