ACTION NEEDED: Public Comments on Draft Deprescribing Guidelines for Older People

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4 Comments

  1. I’m in the last stage of COPD, in other words, dying of slow suffocation. I have been put into Diazepam withdrawal against my will (what possible point could there be after 50 years, and at the end of my life?)

    So far, I’ve been suffering more from the withdrawal than from the COPD for 29 months. It caused me to become housebound and virtually immobilised many months before the COPD did. I consider suicide every day and only wish I had done it the moment the doctors told me their intentions. I have asked what the point is for a dying person and nobody will answer.

  2. I was prescribed Xanax for 25 years & eventually got a DUI for driving under the influence of it. I was thrown in jail for 3 nights & started to withdraw, went into a seizure, was taken to ER & nearly died. I went to rehab from there & am off of it. The prescribing doctor got his license permanently removed & I have severe long-standing issues from Xanax. I suffer from extreme weakness, muscle aches, anger, irritability, impatience, severe frustration, tooth decay, back problems, chronic kidney disease & liver damage. I am considering suing the physician.

  3. Re: Deprescribing Guidelines For Older People

    I take a benzodiazepine (clonazepam 2mg) as maintenance due to a month in Catatonia that caused severe malnourishment and dehydration. My Catatonia was caused by an extreme fear response, exacerbated by a severe brain injury.

    https://journals.sagepub.com/doi/10.1177/02698811231158232

    https://pmc.ncbi.nlm.nih.gov/articles/PMC8900590/

    https://psychiatryonline.org/doi/10.1176/appi.neuropsych.17060123?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

    To my horror, I found that very few doctors worldwide know what Catatonia is, how to diagnose and how to treat.

    In older adults, rapid discontinuation of benzodiazepines cause catatonia, as well as rapid discontinuation of anti-psychotics. Drug withdrawal Catatonia is common, but under diagnosed due to a lack of medical training and patients are left to linger for years in psychiatric wards or intensive care units.

    I now work with families of patients with Catatonia to provide them with resources. Which is ridiculous because physicians should be identifying Catatonia, especially drug withdrawal Catatonia, and resolving it as well as recognizing it as a potentially deadly consequence when de-prescribing/tapering benzodiazepines.

    Yes, there are many negative consequences to benzodiazepine withdrawal, but nowhere am I seeing Catatonia as the most dangerous consequence.

    Could your organization address this issue? The guidelines are dangerously incomplete because they ALL omit Catatonia as a dire consequence of too rapid de-prescribing/tapering schedules. Physicians, patients and families need to be educated and informed!

    Thank you!

    1. Helen, YES, I was catatonic when I abruptly quit Xanax after using it for 25 years. I was hospitalized & couldn’t even speak to people. Thank you for this very important reminder of an effect of benzo withdrawal.