Cause of Death: BWS and Psychopharmacology

Cause of Death: BWS (Benzodiazepine Withdrawal Syndrome) and Psychopharmacology

When a death occurs, depending on the status of the human life at the time of death, either the attending physician or a coroner are required to list the Cause of Death. There are very specific rules for determining the cause of death. The causes are listed in order of occurrence. Nowhere on this list do you see the term “BWS and Psychopharmacology”.
Over the course of the last two weeks, two valued and loved humans have died of this cause. There may be more I am unaware of, but both of these beautiful women were active in support groups for those suffering from an iatrogenic illness caused by psychiatric pharmacology.  Rather than the true cause of death I have suggested, we likely will learn that their death certificate lists Suicide or Neuropsychiatric Disorder or maybe on a far reach, Substance Disorder.
Those three causes of death put the blame on the injured and sick human. If the doctors were honest about what really occurred, the most correct of those listed would be Poisoning. These women were poisoned by following their doctor’s orders and taking medications as prescribed for symptoms that were unable to be confirmed by any labs or imaging. These women believed and trusted their doctors that the medications would not hurt them.
The most recent loss just last Friday was a woman I met, not once but twice, while both of us were inpatient in psychiatric crisis centers. When we were reunited the second time a friendship was forged. We both were in the throes of brutal withdrawals from psychotropic medications including benzodiazepines and anti-depressants. We also had become aware prior to our hospitalizations that it was the medications themselves and the withdrawal from them that was making us so sick.
This beautiful young woman was the mother of a 5-year-old daughter. She was the beloved daughter of caring parents. She was quiet spoken, sweet as southern tea, and had a heart that held enough love for all the world. And, she was tormented by the ravages of withdrawal off medications like Zoloft and Klonopin.
Whatever the method of death, the cause was the symptoms associated with BWS and Psychiatric Pharmacology. Prior to the medications, she had been a vibrant hopeful full-of-life twenty-three-year-old and the world was open to possibilities. Shortly after beginning the medications and taking them as prescribed by her doctors she started suffering from multiple horrifying symptoms. She knew it was the medications, but no one would listen.
She was hospitalized against her will, having the most terrifying physical and mental torture imaginable, and drugged more and more and more throughout her hospitalization. She had been brought from another psychiatric unit where she had been for a couple weeks to the hospital I was in. She was like a zombie yet still beautiful, in a haunting ethereal way. She cried a lot. We both cried a lot. Over the course of a week, we shared a few conversations while coloring. She drew and colored. Her art was just like her, warm and bright and beautiful. In spite of both our horrible conditions, we saw a light in one another.
Not even two weeks later, having had yet another significant run in with suicidal ideation, I was admitted to another psychiatric crisis center. Less than a week after my arrival, here comes Marrisa. Still crying, still broken, still shaking, still breathing and still beautiful. Inside and out.
We talked a lot more in this environment as it was only women and a very small setting. We both had been struggling with chronic suicidal ideation. We both knew it was because of the medications. We both agreed we really wanted to be well and live and love our families and our lives. Yet suicidal ideation is a hallmark symptom common for those who suffer from the withdrawals from benzodiazepines and other psychotropic medications.
We shared so many stories and fears and even things we were really ashamed of because of how the medications had changed us to behave in ways that weren’t in alignment with our core values and beliefs. We talked about how the medical community treats us as if it’s our fault for being sick, yet all we had done was take medications that the doctors told us to, in spite of black box warnings for suicidality for her Zoloft and for my Effexor XR. We took the benzodiazepines for months, or in my case off and on for 3 decades, as our doctors prescribed, in spite of the warnings against use for longer than 2 weeks.
The end of this month will be two years since that first meeting. My heart is absolutely shredded to bits by the news of her passing. The reasons are all over the spectrum. My heart aches for her family who may never fully understand what really happened. My heart aches for my friends who are all reeling from this devastating news. My heart aches because it could have been any one of us. It could have easily been me. I too have been in a horrifying wave of symptoms the last month. My heart aches because it feels like no one outside our groups is listening.
This is NOT due to a psychiatric illness. This is due to an iatragenic illness. The suicidal ideation and depression and bone pain and brain pain and ruminating and intrusive thoughts and akathisia and unrelenting insomnia are all symptoms because of how those medications altered our GABA-receptors and neurotransmitters. But no one that is prescribing them is acknowledging this. They want to blame it on us, the patients.
Please, whatever the listed cause of death is for my friend and the other recent loss in our support groups, please share the truth. That this was caused by medications that we did not get the full disclosure on of how they could destroy our lives and maybe even kill us.
Please reach out to those who are trusted administrators and moderators in the groups during this time of grief.  Find a partner in pain and commit to one another through the bad times to call in and give encouragement. We cannot do this alone and those out in the world aren’t ready to face the truth that we didn’t cause this ourselves and we aren’t a psychiatric label. If it is a bad day and you are in a bad wave, do NOT be ashamed to share that pain with another! It is by sharing the pain that we learn the strength we have for one another and for ourselves.
There is no one to blame for this except for the medical community. That is the truth. RIP my friend. RIP to all our friends who have lost this battle. You will not be forgotten! You fought hard and we all watched. Memories of you will always make us smile.

I believe this photo on her page was soon after we met. I found it on her public page.

 

18 months since I jumped: An update on healing

I am able to recognize my blessings each day and be grateful for all I have and have hope for continued blessings in my future!

Greetings from a highly improved me!   It has been eighteen months since I jumped (abruptly discontinued) from taking Ativan 1mg daily after tapering from taking Ativan 3mg daily. I tapered over the duration of two years. My severe detox and withdrawals period was exacerbated by the fact that I had jumped off Oxycodone 10mg only two months prior to stopping the Ativan.  I had tapered off a daily dose of 45mg-90mg over a 2 year period.   What had started in 2010 as a prescription for Percocet 5/325 one every 6 hours as needed for pain, grew until it became a monster in my life that ate all the goodness up. It was just one of the numerous medications that I was prescribed over two and a half decades.

From my records dating 2010 until the fall of 2017 I had 19 pharmaceuticals prescribed to take on a daily basis. Many of them for longer than the recommendations written in those little tiny informational packets you get sometimes with a bottle of pills. Many of them were also prescribed for things other than what they were originally created to treat. Off label uses.  My PCP (Primary Care Providor) also had recommended numerous over the counter medications and supplements as well.

 

This smile was for doing a walk/jog and feeling that great pain!

This smile was in preparation to celebrate RECOVERY

This smile was for a magazine article

This smile was for a friend during a walk in the mall.

This was a smile ready to go to a meeting

                                                                I can smile so much easier these days 
I had been quite aware of the perils of addiction as I have personally witnessed and experienced it in my life in many forms and throughout many experiences.  My own addiction (maladaptive coping mechanism for suffering) was gambling. I knew what it felt like to not only crave something, but would go to great lengths to have that need fulfilled.

That is NOT how the medications were for me. I was dependent upon them. I took them as prescribed. I was trying to check IN to life. I was trying to find a way around the pain (both physical and emotional) so that I could participate in life. Yet the conditions continued to mount until the amount of medications my PCP prescribed became toxic! They didn’t work anymore.  In fact, some of them created a paradoxical effect, causing the exact symptom they were meant to treat.

When I recognized that the use of all these chemicals was harming me more than they were helping, I knew it was time to make radical changes in how I was managing (or letting my PCP manage) my health. I took back the reigns and sought a different path
It wasn’t really a conscious choice, embarking on the journey through the hell I have been through.  It was simply the act of starting a forward movement towards change by doing just one thing differently. Then it grew to more things differently. Things like spending a lot more time outdoors. Activities such as interacting with animals and being creative with a camera. Making very conscious choices in what I put into my body. Eliminating as much negativity as I could. Yet, there were still struggles as I didn’t know all that I would face along this journey.

No one had warned me that there was a possibility that I could have psychotic episodes coming off these medications. No one had warned me that I could reach tolerance and have paradoxical effects like a severe case of insomnia that lasted for 20 years. Only now, after being off every single medication for 40 days, am I beginning to have occasional bouts of normal sleep. No one told me about excruciating bone pain that left me curled up and rocking and crying on my mattress. No one told me of the incessant need to move, the rocking and bouncing legs and full body restlessness that was exhausting and robbed me of any rest for my ravaged body and brain. No one prepared me for how shunned I would feel and how that would further the crippling agoraphobia and paranoia so that I could not tell who I could or could not trust. This further complicated the entire process.
No one else knew how bad this would be either. I know now that there was NO one in my life anywhere close to prepared for the wild and horrifying symptoms and behaviors this would create.  It was terrifying to go through and I can imagine it was scary as hell to watch! In fact, knowing many others who have endured the hell I have, some even worse, I know that very few people in the world have been prepared to be of any assistance for someone going through this type of severe and lengthy mental and physical anguish.
That first year was a doozy! Fraught with the loss of health and home and any stability I believed I had, pretty much everything was gone in my life! Friends, family, belongings, any sense of dignity was gone.  I was robbed of all hope by the Benzodiazepine demons that lived in my head. All I did was bounce where the winds took me, trying to protect myself from me, and from others who were ill-equipped to be of any help.

Unfortunately, sometimes due to their lack of understanding or skill, those I most hoped would help were only able to add to the pain and suffering by their responses and reactions to me.   Those that truly care would have done different if they had known how.  I believe this is true for all of us suffering from this.  Yet they are the ones who just mostly stood by and watched and felt helpless. They had nothing to offer except recognizing the pain was there.  Today I can feel bad for their experience in watching all of this hell.

This last 6 months I have turned a corner. I can feel it internally and others have commented on it externally. I have been more focused on myself and finding healing and seeking the path to wellness than ever before in my entire life.  The tools and skills and interactions and experiences I have participated in have helped me have a sense of acceptance and peace.  I truly feel more equipped to deal with whatever life may bring to me from here on forward.   More than ever before in my life I have a sense of direction and purpose.
I still have much work to do. Both of my current therapists are recommending intensive treatment for Complex PTSD (Post-Traumatic Stress Disorder) including modalities such as ACT (Acceptance and Commitment therapy), CBT (cognitive behavior therapy), and EMDR (Eye movement desensitization and reprocessing). Both of them say it is imperative for me to do this work for complete healing and the ability to get past the things that haunt me regardless how much I try to not let them.
I personally have taken it upon myself to learn life skills that I have found are helping me tremendously. I have adopted the practice of meditation. I meditate at least once daily, but usually twice a day. MY meditation is very much connected to my spiritual practice and prayer time. I also do Conscious breathing, utilizing a timer to just stop and breath once an hour. These skills have reduced my anxiety tremendously and are excellent for staying in the moment which is so necessary for those with PTSD.  I eat at least an 80/20 whole foods diet, primarily organic in nature and from sources as local as possible.

Burger on a bed of lettuce and salad, yum

Miso, raw veggies and apple

Organic and lots of colors

Veggies over mashed cauliflower…energy to study

Delish chicken with raspberry sauce, and veggies

VeggiestuffedPortebella

Simple eggs over greens, avocado and apple

Green smoothie

Snacks

Vegetable Soup

Sauteed veggies, organic eggs, blueberries and some yogurt

Since the New Year I also have been working on having the habits of movement (exercise) and drinking more water daily. I have also begun light jogging. This I am doing still with living under the fact of pain is in my life. I have nerve pain in my feet that is non-stop 24/7. I also have pretty severe back and neck pain. Yet after a 10 week-long session at a pain clinic, I have learned some wonderful new ways of looking at pain and living with it. This is why I now am more encouraged and hopeful than I have been in an extremely long time. I feel very empowered.

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Yet I still need help. I am still homeless. I still have no vehicle.  I am still awaiting a determination on my most recent filing for Social Security Disability. I still have a couple of years ahead of me doing some really difficult personal therapies. I still have limited energy and endurance.
After careful consideration, counseling with others, and making efforts to find stability and a place to live and work both where I am and where I last came from, I have decided to go back to S. Oregon.  I have more work I can do there than I have been able to find here.  I ran an ad and I have already booked 3 house-sitting gigs. I also have a couple of clients that want me to do periodic light work around their properties (gardening and housekeeping type chores). I have a friend who has offered me the use of her trailer for 11 months, and I have a couple of possibility of places to put it in exchange for helping on a person’s property either with care taking or with farm type chores.  I am willing and able to do this. It won’t be enough to get ahead, but I will have a roof over my head and some security for at least that time period.

I have been offered a trailer like this to use for about 11 months if I can get a secure place to park it! High living for a modest gal like me!

What I need more than anything right now is a vehicle and maybe the first 6 months of insurance paid.  Or even the first 3 months. Then I can get to the house sitting jobs and the clients who have other chores to do. Then I can earn a few pesos each month. My goal is $600, which is 30 hours a month. I will most likely have to do that many hours again where ever I end up parking the trailer in exchange for rent.  That works out to about fifteen hours weekly of being up and moving and doing some sort of physical activity.  15 hours a week is about all I can do without being where I can lie down and rest intermittently.
I know I will keep improving as I continue to do the habits I’ve created and use the tools I have obtained. I know my energy will increase as I continue to lower the stress of dealing with PTSD through the time invested in treatment and as my body continues to heal from the damages done by the medications I took for too long!

I served healthy snacks at the gathering I hosted recently. Beet brownies and Apples with Almond butter drizzle, Homemade hummus and veggies.

Beet brownies are amazing!

This was a smile for entertaining for the first time in a LONG TIME

I also am involved with Vocational Rehabilitation.   They are going to help me pursue the reinstatement of my nursing license. It is my short-term goal to utilize my nursing license in creating a health and wellness mentor and coaching business. I believe I have a vast amount of knowledge and experience that can be used to help many others who live with physical and emotional pain. I believe my new-found enthusiasm and gratitude for a new opportunity can encourage and inspire others to pursue their truest selves! I have been a helper and have had a healing nature throughout my life. Now that my true self (not drugged by pharmaceuticals) is re-emerging stronger than ever, I trust that God and the Universe will allow my best self to help others possibly find their way out of suffering too!

Participating in an online Health and Wellness coaching program. It is self directed and self paced. Perfect for me right now. As well as it is FREE!!!

I am so grateful I am still here on earth and alive. I am so grateful the benzodiazepine (and other pharmaceutical) demons did not completely destroy me. It felt like I was destroyed at times, yet here I am smiling and grateful and caring for myself….and others!

After such a dark and seemingly endless foray into the depths of psychological pain so deep I felt life wasn’t worth living, I now have hope!!!  I also am able to develop goals.  It is the first time in many years I have felt capable of even thinking of having a goal, let alone taking the necessary steps to get there.  One of my goals is to  jog/run in a 5K event the weekend of my 56th birthday.   My new walking habit inspired that goal.  I have never enjoyed running or jogging, even as a child.  Yet now, when pushing through the chronic pain, I find that I reach a point of some real clean current pain and it is a desirable experience.  Pushing past the pain to get going is worth it.  The daily steps I am taking are to keep me focused and to build my skill and strength level to reach that place of being able to complete the race.  After the race,  if I still feel it is something that is adding value to my health and life and wellness, I may try for a 10K.  It is a measurable success.  There are other goals as well so each day I purposefully do actions to bring me closer to the prize…..WELLNESS and HEALING!

Many losses in the last months, yet I am able to cope and manage my feelings. Progress!

Signs of spring capture my attention

I am fully present on my forays into the world

I also have a great aspiration to help others like me!!! I have a big dream of someday creating a healing place (long term inpatient facility) for those like me who have suffered in their lives with DIS-ease of any kind.   People wanting to come off pharmaceuticals that have become toxic to them, especially opiates and benzodiazepines; those who suffer the consequences of addiction; those who have emotional pain that requires that they be loved on and guided and encouraged to health! I envision a place of many woods and streams and much beauty where people can rest their tired minds and bodies and take a few deep breaths for a period of time. I see gardens and animals, some of them providing companionship, others there for their food source to provide healthy nutritious meals. It will be a place where there is patience and tolerance and gentle trauma-informed guidance. People will have a time and place to explore their suffering and learn skills for finding peace and acceptance of what is.  I dream of it being a place they will also find a sense of purpose and the ability to create goals and plans for achieving them. It is a big dream. It will require a big tribe to create it. That will be a huge focus on the next portion of my journey. Creating a healing caring loving tribe that can share this vision! 🙂
oh….btw….it feels great to be able to write a bit! That is one skill that has suffered during this time and it is another sign of my healing!

Two steps forward, one step back. Today was a better day.