Interviewing Amanda: A Benzodiazepine Withdrawal Caregiver Perspective

Short-Term Use ♦ Tolerance ♦ Interdose ♦ Cold-Turkey ♦ “Setbacks” ♦ Akathisia ♦ Rage ♦ Self-Harm ♦ Suicidal ♦ Protracted

This is a harrowing and grievous true story of how a medication, prescribed without any informed consent or warning about its dangers and taken exactly as directed, can devastate an entire family’s life.

It is also an inspiring and beautiful story about friendship, family bonds, love, commitment and the human will to survive.

Amanda and Nick met sometime around November or December of 2010 on BenzoBuddies, a community forum for benzodiazepine withdrawal support. Amanda had joined BenzoBuddies in a desperate search for support and information relevant to caring for her husband, who was experiencing severe withdrawal resulting from a cold-turkey off of his prescribed, taken-short-term benzodiazepine. Nick, on the other hand, was an iatrogenic benzodiazepine sufferer herself who was also enduring a particularly torturous cold-turkey, suffering similarly to Amanda’s husband. They reached out to one another on the forum board and in private messages, sharing notes, as Amanda needed insight into the suffering and needs of her husband from Nick and Nick needed insight into the caregiver experience, particularly how to get family on board to help and to understand what was happening to her, from Amanda. In separate homes across the country from one another, but enduring equally horrific circumstances, although on different sides of the coin, Amanda and Nick would remain in regular and frequent contact over the next seven years.  Once strangers, whose paths probably never would’ve crossed, a friendship was born out of untold suffering and life-devastating circumstances brought on by naively accepting a medical provider’s prescription.

In this interview for World Benzodiazepine Awareness Day 2017, Amanda asked Nick to record an interview with her, feeling that adding her eight-year (to date, save 2 years of the time her husband was healed before his “setback”) experience as a caregiver to the collective voice of available benzodiazepine information might help to facilitate awareness, education and support, not only for other caregivers, but also for medical providers, the general public, and benzodiazepine withdrawal sufferers themselves. Amanda’s husband has experienced a particularly severe and long-enduring case of benzodiazepine adverse effects, withdrawal and protracted withdrawal, including symptoms like akathisia, suicidal ideation, chemical rage, self-harm and wailing crying—to name a few.

Amanda and her husband have been married for 27-years and have five children. She and her kids rallied together for six years total (2009-current, minus 2 years of healed time) to ensure that her husband and their dad survived the hardest and most horrific thing that has ever happened to their family. This interview is a raw, honest, no-holds-barred, rare look behind closed doors at the horror that occurs in the households of some families enduring the untold destruction that results from benzodiazepine prescription and cessation. Aside from the honest truth about her family’s experience, this interview between two friends is also a cautionary tale that short-term benzodiazepine use is not without risk. It is also one of hope for healing, rich with information for anyone desiring to learn about and understand this iatrogenic illness.

AMANDA’S HUSBAND’S HISTORY AND TIMELINE, FOR CONTEXT:

Before playing the interview below, it is important for the listener to become quickly acquainted with Amanda’s husband’s benzodiazepine history and timeline. This will provide the listener with the full context and background information needed to understand the conversation. The following questions were posed to Amanda in regards to her husband:

What benzodiazepine drug and dose were your husband initially prescribed?

It was Ativan, or Lorazepam, which was first prescribed at 0.5 mg and he was told to “take it as needed” by the Nurse Practitioner who initially prescribed it.

When was your husband first prescribed the Ativan/Lorazepam?

The first prescription for Ativan was written in August of 2009.

Why was he initially prescribed the Ativan/Lorazepam?

It was prescribed for an acute anxiety attack that seemingly came out of nowhere. He had no history of anxiety or what some medical providers label as “mental illness” in his life, so it was a new experience for him to have anxiety of this nature. It wasn’t until months into withdrawal that I researched and discovered that anxiety is a side effect of Albuterol. He had been using his Albuterol inhaler more often than usual right before the initial anxiety attack for which Ativan was prescribed, so I’m convinced that was the culprit. No medical provider we saw ever asked about that though, they just all said he had five kids and so must be ‘under stress’.

How long had he taken the Ativan/Lorazepam before the adverse effects started?

Within a few days of taking it, his anxiety had increased and, per the instructions of his treating Nurse Practitioner, he began taking it throughout the day. By the time we figured out the benzodiazepines were worsening the problem (which was only a few weeks after he initially started them), or the cause of the problem at that point altogether, via interdose withdrawal or a possible paradoxical reaction to the drug, he was taking up to 1.5mg per day.

How did you determine that it was Ativan, or Lorazepam, that was the problem? What was the timeline for what happened after the drug was identified as the culprit for his worsening condition?

I researched Ativan and it said that it was ‘addictive long term’. We then called the Nurse Practitioner who had prescribed it and he told us it ‘wasn’t addictive’. Initially, my husband was still able to work—even though in a fair amount of discomfort with the adverse effects and anxiety he was enduring from the Ativan. I thought ‘long term’ meant months, not weeks, and so I didn’t really look more into it until my husband decided it wasn’t helping and tried stopping it. By that time, my husband had been on the Ativan, in prescribed doses between 0.5mg and 1.5mg, for about 3 to 4 weeks. Even with taking it as prescribed for that short period of time, it was too late. He had already become physically dependent and all hell broke loose.

That’s when we called up the author of a book I had been reading who helped people get off medications with nutrition therapy. She told us to download The Ashton Manual and then we consulted with her on the crossover to Valium. A naturopathic physician who knew benzodiazepines were bad, but not much else about them or withdrawing from them, was willing to prescribe the Valium for the crossover and taper.

The taper never happened, as when my husband completed the crossover to the equivalent of Valium, he became suicidal. This was a totally new experience for us both, as I mentioned prior that he has never had any history of anxiety, depression, suicidality or anything close to what some professionals would label ‘mental illness’. Because of his sudden destabilization into suicidality, our consultant got scared and advised us to go to an amino acid detox clinic in Mexico, which we did.

How long have you been caring for your husband (to date) and, because your husband has essentially had a few “phases” to his journey (sick, healed, then sick again in a “setback”), could you provide a timeline for that?

I have been caring for him since August of 2009, with a 2-year break period where he was well (or ‘healed,’ as it’s called in the benzodiazepine support communities). The timeline, to further explain the ‘phases’ of his journey, is as follows:

  • He cold-turkeyed Valium (after his crossover attempt to the equivalent of Valium from Ativan) on January 4, 2010 and suffered with severe, daily withdrawal for 26 months before he felt well enough to return to work
  • He felt completely ‘normal,’ or back to his old self—the way he felt before he ever took a benzodiazepine—for a period of two years
  • He then used Oregano essential oil for 2-4 months (we are unsure of exactly how long he used it) as a topical treatment for athlete’s foot
  • After using the Oregano oil for a couple/few months, the ‘setback’ started and my husband has been enduring the ‘setback’ for 3 years as of this month.

Now that the pertinent background information has been provided, we invite you to listen to the interview below. The images, with captions, in the ‘Photo Gallery’ (below) will be put into more context as you listen to the interview (1:14:54).

*To enhance the audio experience, you may wish to use headphones.

 

PHOTO GALLERY:

Amanda’s husband before benzodiazepine prescription:

 

Prior to benzodiazepine prescription, Amanda’s husband thoroughly enjoyed life, especially going to the water. In this picture, he is surfing.

 

Amanda’s husband a year or so before he was prescribed Ativan. He was holding a sweet baby at an orphanage in Central America.

 

The aftermath of prescribed, benzodiazepine-induced chemical rage in Amanda’s house during her husband’s withdrawal (Both during the initial withdrawal and during the “setback”, which is still persisting to this day):

 

Amanda’s living room wall. The hole is a result of benzodiazepine-induced rage in her husband (which she discusses in more detail in the interview).

 

The bedroom where Amanda’s husband slept alone and endured withdrawal. You can see the juvenile fiction books, piled up next to the bed, that he used for distraction (discussed in the interview). There are also 3 holes in the wall from benzodiazepine withdrawal induced rage; one of them is duct-taped over.

 

Amanda’s husband during the two years he was healed (in-between the initial withdrawal and the “setback”):

 

Amanda’s husband with some of their children on a rollercoaster during the 2-year time frame of healing he experienced between his initial withdrawal and his “setback”. This is discussed further in the interview.

If you have questions for Amanda, please leave them in the comments and she will try to respond. Thank you!

Resources:

  • To read more about drugs/supplements/medications which may cause “reactions” and/or “setbacks”, go here.

  • Caregiver Links:

W-BAD Handout for Caregivers

Handle With Care: How to Support Someone in Benzodiazepine Withdrawal by Baylissa Frederick

Loved One’s Guide to Benzo Withdrawal: Loved One’s Guide to Benzo Withdrawal’s purpose is to provide information and support for loved ones of those who have been adversely affected by taking Xanax (alprazolam), Valium (diazepam), Klonopin (clonazepam), Ativan (lorazepam) or any other benzodiazepine as prescribed. Accompanying support group for loved ones: Benzo Withdrawal: Loved One’s Guide

Advice for Caregivers of Folks with Post-Acute Withdrawal Syndrome (PAWS) From a Benzo

What We Wish Family and Friends Knew About Benzo Withdrawal

How to Support a Loved One with Benzo Withdrawal Syndrome

Recovery Road: For Family and Carers (click on “resources” then go to “for family and carers”)

Baylissa.com: For Family and Caregivers (requires a very affordable joining fee, as it is run by a licensed therapist)

A guide for carers who are helping people to recover from benzodiazepine dependence

Tips for Loved Ones: From a Benzo Survivor


Blog posts are essays submitted by a diverse group of writers engaged in benzodiazepine activism and awareness. Posts may consist of opinion pieces, creative writing, personal stories and/or more scientific research-based writings, etc. W-BAD encourages all bloggers to cite sources within their writing where possible and also encourages public discussion and respectful debate on topics. Please always do your own research and read W-BAD’s Disclaimer, as blog post content should never be a substitute for medical oversight. If you are interested in submitting a blog post to W-BAD, please Contact Us.

Comments

  1. My son’s experience as well He did not survive..Inpatient treatment was the last straw.Had a 12 hour window of clarity and then a wave that ended in suicide.Nov.1,2013

    1. He was told there is no such thing as a window that is your new antidepressant kicking in.

  2. Parent caregiver and still taking care of my son. Son loss all his motor skills and had in numerous wd’s sx’s. After 5 years doing much better. I am so happy that I found [a friend] who always private message to go into a support group because it’ll take years to heal. To ALL Caregivers take all necessary steps to help your loved one. We all heal!! Thank you, Amanda for sharing your story and Nick for your great work! [comment edited to remove names]

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