Joué
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I first became aware of Sarah when she shared a video clip on twitter of her waiting for an appointment sitting in her wheelchair. Her voice was strained and she was a bit difficult to understand, but as soon as Sarah was in a horizontal position her voice was clear as a bell. I immediately reached out to Sarah to learn more about her incredible health care journey.
Doctors diagnosed Sarah with Schizoid Affective Disorder and gave her antipsychotic medications. When those didn’t work, they gave Sarah over 116 rounds of electric shock therapy - they put electrodes on Sarah’s temples and zapped her with electricity so her brain had a seizure. Doctors also had Sarah on 5 classes of psychiatric medications amounting to 37 different combinations. In spite of this, for 12 years Sarah lived with voices in her head 24/7 telling her how and why to kill herself - all while working toward her Masters Degree.
As Sarah would eventually discover with a proper diagnosis, her psychiatric symptoms were not from schizo affective disorder, they were from hepatic encephalopathy and her brain was marinating in toxins. Once Sarah received proper treatment the voices disappeared. But that’s not the end of Sarah’s story - all those electric shock treatments have damaged Sarah’s brain affecting her speech, memory, and ability to walk.
We had to end Sarah’s interview prematurely as you’ll hear, when she was overcome with dizziness, her speech quickly deteriorated, and she had to lie down on the floor to remove the pressure on her brainstem. Listen to how Sarah’s voice changes during this - Sarah’s final words are in the voice she had before electrical brain injury.
SHOW NOTES
First Psychosis
0:06:30
Sarah grew up in sunny San Diego, a 3rd generation San Diegan - wonderful parents, but struggles like all families - Sarah is the oldest child and only daughter - when frustrated her Dad would say 'Well Sarah, I've not had a daughter before' - she has 2 younger brothers - her parents did their best to provide a loving and supportive environment
0:08:30
Sarah's Mom is a wonderful lady, but they did butt heads - they have reconciled and Sarah considers her Mom to be one of her best friends now - after high school Sarah moved to Rexburg, Idaho where she learned about living in snow and -30 Fahrenheit
0:09:30
Sarah went to a college made famous by (the film) Napolean Dynamite, called Rex College, but now known as Brigham Young University Idaho - graduated and transferred to BYU (Brigham Young University) in Provo, Utah - after 1 semester studying English, Sarah served a mission for Church of Jesus Christ of the Latter Day Saints and learned to speak Spanish and serve the people of Texas - after 18 months Sarah was invited to join the American Sign Language program and worked for 2 months with deaf people - and then returned home to BYU
0:10:30
Sarah had bad chronic and seasonal allergies causing asthma, sinus infections and bronchitis - growing up Sarah had been given a lot of antibiotics, like 4 - 8 times a year throughout childhood through her Mission - she got pneumonia when she got back and was put on another antibiotic and within a few doses had her first psychotic break
0:11:30
Sarah was on campus trying to find her way and she could see people dressed in pioneer era clothing - she was hauled off campus and put in the psych unit and put in a straight jacket for more then 36 hours
0:12:30
That was scary because she didn't know why they were putting her in a straight jacket - it was a very vulnerable place to be - that brought up childhood traumas she had with a babysitter - being in a straight jacket was very traumatic
0:13:30
Initially they told Sarah she was Bipolar with Psychosis - then was labeled with Schizoid Affective Disorder with Bipolar type, meaning she had symptoms of schizophrenia and bipolar - then the medication they gave Sarah could not be metabolized by her body and she became catatonic - they didn't realize ammonia was marinating in her brain - it took about 4 years of those meds before she became completely catatonic
0:14:30
In those 4 years, Sarah was able to take 1 class at a time - she was determined and worked hard to get her degree in 8 years - Schizo Affective Disorder has symptoms of schizophrenia
0:15:30
'Positive' symptoms are 'added' to the patients experience: they see, hear, taste things others don't - 'negative' symptoms 'take away' from the person: motivation, ability to speak, organize thoughts and environment - those are the 'schizoid' part - 'affective' refers to mood0:16:30Lots of mental illnesses have affective disorders: mania with high energy, difficulty following thoughts, rash decisions, depression, difficulty processing info and energy or connect emotionally with people
Voices in her head
0:17:30Sarah's problem was mixed mania, so all the energy of mania, and all the symptoms of depression - plus symptoms of schizophrenia, so for 12 years Sarah lived with voices 24/7 telling her how and why to kill herself - her brain was marinating in toxins - every time she started to believe the voices, she became very proactive in seeking out help - that was interpreted as attention-seeking, not trying to prevent her own demise
0:18:30S
arah would check herself into the hospital asking for help, and then be ridiculed for asking for help - she was called a 'frequent flyer' and a lot of things by staff, probably because they were frustrated they couldn't 'get the medications right' or thought Sarah wasn't being compliant - but Sarah always took her meds as prescribed, always filled her prescriptions on time because she had been trained to believe she needed those medications in order to survive, and she was not doing a very good job surviving
0:19:30
To Sarah, not taking the medications was not an option because she was told over and over that meds were the only way she'd be able to function - they kept trying different meds for psychosis, mood, depression, anxiety, and sleep - 5 classes of medications and Sarah cycled through 37 combinations and they played with the chemicals in her brain in order to find the 'right' combo that would stabilize her
0:20:30
It was difficult - they would try to make the hospital less welcoming so Sarah wouldn't want to come back because they thought she was attention-seeking - Sarah says 'dude, if I wanted to get attention I would do something good like write a book, or travel the world and set a record or something - nobody wants negative attention'
0:21:30
Sarah would endure strip searches every time she was hospitalized, which was every 3 - 5 weeks, but her father says it was more frequent because sometimes she'd be re-admitted within 72 hours - Sarah was marinating and they couldn't recognize that because there are not really any tests - they don't do cerebrospinal taps for these symptoms - they don't recognize encephalopathy very often unless its associated with seizures
0:22:30
Most doctors will just refer a patient to psychiatry instead of someone who understands encephalopathy - even a lot of encephalopathy not hepatic encephalopathy, her 1st diagnosis - and that wasn't diagnosed properly until 2.5 years ago - Sarah had learned a lot of adapting skills over the 12 years of hell
0:23:30
During that period because none of the meds worked, and Sarah became catatonic in 2002, they didn't do any blood work or brain scans to find out why she was catatonic, they just assumed they'd probably diagnosed her with schizophrenia - since she's not responding to the medications we'll give her a higher dose - when that didn't help, they said it was time to do shock treatment
Shock treatment, aka ECT
0:24:30
They gave Sarah bilateral electroconvulsive therapy (ECT), where they put the electrodes on either side of her forehead and used 460 volts of electricity to briefly stimulate the brain into a gran mal seizure - they feel a therapeutic seizure should be at least 25 seconds - so if the patient doesn't seize for 25 seconds they will immediately give them more so they have another seizure - they gave Sarah ECT 3 times a week - but there was one time where she was ECTed twice in one day - every time a person seizes, the brain tries to protect itself and prevent itself from having a seizure
0:25:30
So they have to increase the voltage higher and higher - when there at 100% charge, it is 0.9MC which is below 1.0mc of immediate death - at 100% and the patient still isn't seizing, they put in an IV with caffeine so that it pushes the brain and body to the brink so you'll seize
0:26:30
They have to push through the anaesthesia and mood stabilizers that prevents seizures - the first several were not at 100% of the machines strength, but Sarah had more then a 100 at 100%, and 60% were also with IV caffeine
0:27:30
ECT was invented in Italy in 1938 - Italy has since banned it - it was brought to America - they never did safety studies - they never did any kind of scientific decision making about appropriate dosage or methods to use - there more then are 7 variables involved - it is not standardized - it is not regulated - it has never been safety tested - some people feel ECT has saved their lives - others feel ECT has destroyed their lives
0:28:30
And families will tell how ECT killed their loved one - Sarah had 116 ECT treatments over 18 months - from 2002 to 2004 - then over 14 months from 2006 to 2007 - Sarah quit against medical advice in 2007 - she was required to sign 'informed consent' before each ECT procedure, but they don't provide all the info - it says the most pressing concern would be headaches
0:30:30
Sarah had to tell them her biggest worry when filling out the forms, so she always put headache, as that was all she was told about potential side effects - but they don't understand the risks because they've never done longitudinal studies to see the long term effects or neurological factors or even addressing patient satisfaction because the the surveys get a very low response rate, like 28% - and then say of the 28% who returned the survey, 80% were happy
0:31:30
But some of those people who could not put the stamp on the letter, or needed help filling it out, or were so angry at what had been done to them that it would go immediately in the garbage - Sarah says it is interesting when you start to look at the research and ask critically 'what are they not telling us?' What are the holes in the methodology? They will use the MMSE (mini mental state examination) a simple 18 question test for brain injury and dementia
0:32:30
What they don't say is that the MMSE can be passed by people who've had lobotomies - so it is immaterial, it can't be used at school or work for accommodations - so not a good measure of the damage actually caused, but it is the most used assessment for people having ECT....if they're given an assessment, but most people are not
Memory loss
0:33:30
Sarah can't remember the first few ECT treatments because she can't remember the first 36 years of her life - she's lost 85-90% of her memories - she was 34 years old when she stopped ECT, but it took another 2 years for her brain to start to make new memories - Sarah has 38 journals and she reads them frequently so she knows what has happened in her life - so unless she's read it read recently, she wouldn't be able to tell many specifics
0:34:30
When Sarah 12 years old a Sunday School teacher told her about Wilford Woodruff who wrote in a journal every day by the time he was 90 he had many volumes - at the time Sarah wanted to be a writer and decided she would journal daily - she's very grateful, without them she wouldn't know about family vacations or formative experiences - she doesn't remember her grandparents and holidays - all our life decisions are based on our previous experience and memories - our relationships are based on shared memories
0:35:30
It can be very challenging living without formative memories - Sarah had a massive identity crisis because she didn't know the symptoms of memory loss
0:36:30
When Sarah looks at pictures with her family, its like playing 'Where's Waldo' because if she can find herself in a picture, she knows she'd been there, but it doesn't trigger any memories - it has been a grieving process about her loss, but she's learned its not helpful to focus on her loss, she needs to be moving forward because she has a life that still needs to be lived
0:37:30
In 2015, Sarah was on her 37th combo of meds - she'd been on meds for 17 years and her meds just stopped working - they generally only work for 5 years, part of that the brain has become dependent and the dose has been raised as high as they can
0:38:30
Sarah had just been married, had just finished her Masters and just started working full time when her meds stopped working and she was scared spit less and she didn't want to freak out her husband who had never seen her when she was very symptomatic, and she didn't want to lose her job or all her colleagues have know because Sarah worked so hard to establish herself as a professional - she also worried about her family because she was finally starting to re-build bridges that had been burnt when she was very symptomatic
0:39:30
Sarah was trying to minimize her symptoms, but was very scared - a friend had been trying to get Sarah interested in micro-nutrition, but Sarah had put her off for 18 months - Sarah is a scientist at heart and the friend gave her the research to review - randomized control trials, solid methodology, so Sarah took the info to her psychiatrist and they decided to taper Sarah off the meds - but psychiatry is not prepared to taper people off meds
0:40:30
Sarah started taking the micronutrients and after a few weeks started to feel cognitively weird so talked to the manufacturer - they said you've been over-medicated and should taper off the meds, your brain now doesn't need the medications as much
An accurate diagnosis: Hepatic Encephalopathy
0:41:30
The psychiatrist says that Sarah is 50mg over the upper limit of the antidepressant, so they cut that 50mg first - Sarah never understood withdrawal until she worked with someone who didn't understand tapering - it was a very scary process, caused a lot of problems
0:42:30
They learned to support Sarah's body by supporting it enzymatically , a lot of amino acids, specifically protein isolate to support her blood sugar - she drank shakes every 90 minutes and she would function very well, but if she missed the protein isolate shake she would deteriorate very fast
0:43:30
Sarah had a friend who was getting amino acid IV, so Sarah started looking and found Dr John Humiston and he recognized the symptoms of withdrawal - by this time Sarah had been off the meds for 18 months - he said they first needed to get her gut healthy before amino acid IVs
0:44:30
Sarah was like 'dude, food has never affected me, hurt or harmed me, don't worry about it' - but he had Sarah track her diet and then cut out fermented foods, sprouted food, nuts, dairy, a whole swath of food - he recognized all those antibiotics Sarah had as a child caused an overgrowth of candida and that caused hepatic encephalopathy - Sarah went home and cleared the kitchen of foods that did not meet the new diet
0:45:30
Within 3 days, the psychosis Sarah had been experiencing left and she hasn't had it since - except once when she took an antibiotic for a kidney infection - by the 2nd dose she was being followed by someone she knew was dead
0:46:30
And being talked to by a dead ancestor - by the 3rd dose she was paranoid, pacing, pulling her hair out, non-verbal, shaking, sweating - her family took her to the ER but she didn't want to go back and being given meds, she'd just gotten off them - Sarah knew she needed to occupy her mind with something systematic, so she began folding paper, tearing it, just doing something very basic
0:47:30
When the psychiatrist saw the very tiny pieces of paper he asked Sarah what was going on - she said she thought he had cameras watching her, but she realizes her brain is on fire and she needs to reign it in - he looks at Sarah and said 'I've never had anyone say that before - tell me more' - Sarah told him she was faculty as San Diego State University and teach in the clinical classes about psychiatric rehabilitation and recovery and this is one of the strategies I teach people who are dealing with false voices that are distressing and they need something simple as distraction - he says 'you're doing a good job, you can go home' - that was the 1st time Sarah had gone to an ER and walked out
0:48:30
Sarah says we have yeast producing bacteria in our stomach to process food, and when they ferment our food they produce over 20 different alcohols as by-products, in small amounts is no big deal - but if you have fungal over growth they produce a lot of by-products
Dystonia
0:49:30
That goes for bacterial by-products too - we need to have a healthy balance of bacteria, yeast and fungus in our guts, if we don't these by-products start producing too much of these alcohols like acetone, acetate and start marinating the brain and can cause problems with behaviour, emotion, sleep, autoimmune - because brain and body trying to maintain healthy balance - Sarah found a doctor who put her on anti-fungal medication and within 3 days all of her psychiatric symptoms were gone
0:50:30
Sarah tries not to dwell on the fact that a strict diet and anti-fungals may have prevents 17 years of suffering - missed out getting married earlier, missed out on having kids, missed out working and earning a retirement, missed out on family events
0:51:30
It caused a lot of strife and hardship on Sarah's family - if she dwells on it she gets pulled into the 'poor me' gravitational pit, so Sarah works hard on re-focusing on gratitude and here and now, and focusing on what she can do to prevent this from happening to other people - Sarah has to make meaning of her experience, its the only thing she can do
0:52:30
Sarah takes that sense of oppression, injustice, being misunderstood, misjudged, judged harshly - Sarah needs to make sense of her experience so that she can feel like what she went through was not in vain - Sarah has been on the strict diet for 2.5 years and must adhere to it
0:53:30
She was on anti-fungal meds for a looooong time: 18 months - since she'd been infected for a looooong time - she still takes supplements to support her gut - but about 7.5 years after the last shock treatment, Sarah experienced a worsening of neurological symptoms, worse then she'd ever had before - problems with muscle twitches (fasciculations) and fatigue easier, problems with her voice
0:54:30
Sarah started to have dystonia, especially the muscles in her neck, and started have dizziness when exposed to a lot of visual or auditory hallucination - so in the car this past April, she was driving for about 45 minutes and by the time she got to University to teach, she had difficulty standing to get out of her car
0:55:30
Sarah started to have muscle contractions on one side of her body, she didn't realize she'd been over-stimulated driving - she then drove to her doctors appointment, a 50 minute drive, and then started to have muscle contractions on the left side of her body and pull her it into a contorted position
0:56:30
Sarah then started to feel a current of electricity down her sternum with diaphragmic paralysis - then she'd be able to breathe again - then the right side of her body would have contraction and contort her body into weird positions - in went back and forth for the next 4 hours - it was intense at first, then less so with more time between - her doctor started to refer her to a neurologist and she saw lots of them
Iatrogenic hot potato
0:57:30
When they see Sarah has a history of shock treatment, then the orders for their testing don't get placed, for brain scans, EMGs, etc - instead Sarah is referred to another neurologist, and so and so on - Sarah is now on her 7th neurologist - Sarah has become an iatrogenic hot potato - she thinks the neurologist recognize that she was harmed by treatment, so they keep passing her along
0:58:30
Finally Sarah found a functional neurologist, he was first a chiropractor then did 2 years of neurology - he did VNG (Videonystagmography) - they put goggles on Sarah to track her eye movements and move dots in her vision - supposed to be 45 minute test in a bunch of different ways
0:59:30
The interesting thing was they were able to create a concussion response - with that stimulation, one of Sarah's pupil's was huge - they stopped the testing and said they needed to let her brain rest, and then continue the testing later
1:00:30
A decade previous, Sarah found a brain injury specialist, and she asked why Sarah why she was wearing sunglasses indoors, Sarah said 'when I take them off I get a bad headache' - the specialist said 'oh, you have a brain injury' and Sarah said 'no, I had shock treatment' - the specialist said shock treatment is brain injury - but Sarah protested that her doctor told her the symptom would go away - since then, Sarah has learned through research that one doctor, a neurologist at Berkeley, outspoken against ECT spoke at the New York State Assembly
1:01:30
He told them the ECT put out 100 joules of electricity, that is the equivalent force of dropping 73 pounds (30 kg) onto a brain from a foot (33 cm) above it - for Sarah that was 116 times, so essentially Sarah has a repetitive brain injury and developed the bulgar symptoms seen in people with motor neuron disease
1:02:30
Motor neuron disease have 4 risk factors: people with ALS get it due genetics; people with toxic exposures; people with a history of electric injury; people with history of repetitive injury - Sarah doesn't have the genetic component, but does have the other
1:03:30
Sarah neurologist says she probably has a conversion disorder since she's not happy with her ECT experience - Sarah says that doesn't explain the saliva problems, speaking problems, breathing problems, thinking, walking, heart, etc - Sarah found a good GP who would order the tests the neurologist wouldn't order so she can take the results to the neurologist
1:04:30
The ECT research is constructed so that they don't talk about electrical injury - they never track patients more than 9 months - delayed electrical injury happens 2.5 to 10 years after treatment - Sarah's onset was about 7.5 years after her last ECT - and Sarah has worsened since then
1:05:30
Research on delayed low voltage electrical injury have studied quite a few people - low voltage is less then 1,000 volts - electrical injury has 2 components: the immediate effect - for Sarah this was memory loss, balance issues, proprioception issues
Delayed electrical injury
1:06:30
Aphagia, word finding problems, executive function - but they've realized that a lot of people with electrical injury have 'delayed electrical injury' - that research shows a lot of motor neuron problems - it fascinating they've been able to separate these 2 things (electrical injury vs ECT)
1:07:30
But natural law doesn't respond to benevolent intent - good intentions is not going to change how the human cell responds to electricity - it is so apparent that delayed electrical injury and ECT survivors share the same speech, swallowing, dystonia
1:08:30
Fatigue and dropping things because no longer have ability to hold them - we're on a spectrum - Sarah knows 4 people who've had ECT and are on that symptom spectrum - it needs to be studied - Sarah has annotated bibliography connecting the research on low voltage injury, delayed voltage injury, and ECT and she needs it to be published
1:09:30
Doctors are siloed in their research and not connecting dots among themselves - they assume the organ they specialize in is not connected to the rest of the body - we can't have siloed research, they are excluding important data - Sarah would never have thought that her neurological symptoms had anything to do with the ECT if not for another person who had ECT and has similar symptoms to Sarah, and this person was forced to retire from being a trauma nurse
1:10:30
When the nurse heard Sarah's story, she told Sarah she had to look into electrical injury research - Sarah was like 'dude, I was never told any of this when I was given my 'informed consent'' - recently, one of the manufacturers of ECT devices had a lawsuit against them and they settled out of court
1:11:30
Shortly after that, the manufacturer updated their user guide, and buried on page 4 is '7 risks associated with permanent brain damage and permanent memory loss' - all the informed consents need to be update, internationally - patients need to know about the risk of permanent brain damage, permanent memory loss - a lot of doctors don't take these risks very seriously so don't inform their patients about them, and minimize the risks - because it is not standardized or regulated, every doctor does it differently
1:12:30
Doctors are never followed ECT patients longitudinally - an inpatient doctor will not be following up with that patient 5 or 10 years later, so they're not going to be seeing the effect that survivors are seeing among themselves - that is why Sarah started an international petition to update informed consent, update core competencies for doctors trained and certified to give ECT, pre-assessments and post-assessments to track longitudinally
1:13:30
When people starting having cognitive problems, they are not even assessed for brain injury and given rehab for a better quality of life - Sarah had to navigate living with ECT brain by herself, with her family saying 'the doctors said your memory would return, so get over it' and her doctor saying 'you'll get your memory back, so get over it' - it is a constant battle - going forward, if we had something safety tested......"Sorry, I'm getting dizzy"
Sarah's speech deteriorates during interview
1:14:30
Scott: Sarah's speaking deteriorates - she says we should end the interview - I am concerned about her immediate well being - I ask if I should stay on the line with her to make sure she's safe
1:15:30
Sarah says she should lie down because "her brain stem does better when its not under pressure" and carries her laptop with her and lays down on the floor - Sarah takes a few breathes and says "Its like immediately" and voice is perfectly clear, unlike the entire interview when she was sitting up - I ask Sarah if she needs to call any one? - She says she'll just hang out on the floor for a while
1:16:30
Sarah says "Its weird to find your new normal. Who would've thought when you were a kid 'by new normal will be laying on the floor so I can think and speak clearly" - we laugh at the absurdity of it all - Sarah continues: when she did the research into the neuropathology of the animals they tested, and the autopsies they did in the '50s, all the animals had compressed brainstems from ECT - so Sarah's symptoms are very consistent with the animal studies - and consistent to what you would expect to see in a human
1:17:30
I ask Sarah if she's heard of 'cranio cervical instability (CCI)'? Sarah says she recently heard of someone with mold exposure who has CCI - I reply "Jen Brea" and Sarah confirms and says she has a history of mold exposure - the building she did her research has history of flooding and a bad roof - one time when she came home from vacation, she had left her air conditioning on in her small apartment, the water drain had plugged and that caused a water bulge in the paint - it took the building manager 3 weeks to replace the wall and carpe
1:18:30
You can't isolate any of things Sarah has experienced, as humans, our body keeps the score, it is influenced by what it is exposed to, and throughout our life, it becomes a cumulative effect - I tell Sarah that I will send her Jeff Wood's website link, Jeff is 'patient zero' for CCI and it was his experience that prompted Jen Brea to look into CCI
1:19:30
Jeff was bedridden for 3 years - they both had neck surgery and are almost completely symptom-free - Sarah says the idea of surgery scares her to death - she's been exposed to so many of the gaba drugs that she's developed acute respiratory responses when given anaesthesia - even lidocaine or novocaine will trigger phrenetic nerve paralysis - it will look like Sarah is having convulsions, but it is the frenetic nerve malfunctioning1:20:30Sarah says "My poor body, I'm doing the best I can, I'm only 44 years old and I'm having a lot of problems"
CONNECT WITH SARAH PRICE HANCOCK:
Twitter: @PsychRehab
Facebook: Psych Recovery and Rehab
Linkedin
Website:http://www.psychrecoveryandrehab.com/
Podcast:https://www.psychrecoveryandrehab.com/esrpodcast/
Youtube:https://www.youtube.com/channel/UCMRPmYh9SrE3RcdmFObhyYw?view_as=subscriber
Sarah's petition for ECT regulation and standardization: http://chng.it/rBGJNSKB5m
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Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
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I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
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I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
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