My Life four years after Electroconvulsive Therapy: Memory loss, brain injury, and Rehabilitation
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- Опубликовано: 2 июн 2015
- Because ECT is so controversial in nature, there are both people who have had extreme success and regard ECT as Life saving for themselves or their loved ones and those who look at ECT as having destroyed their life. Until ECT is completely regulated, there is no sure way to tell if a doctor is using the most current standards, machines or procedures. This video is not meant to act as a deterrent for seeking appropriate mental health treatments. It is meant to both call researchers' attention to the plight of those who have had ECT under less than favorable conditions and a way for people to have more information when making decisions about treatment options.
I had more than 100 Bilateral ECT treatments on a brief-pulse machine.
Follow my journey on the Emotional Self Reliance podcast www.psychrecoveryandrehab.com...
If you are interested learning more about my presentations on Psychiatric Recovery visit my website www.PsychRecoveryandRehab.com
If you are looking for more information on ECT, Check out www.ECTresources.org
I had ECT from 2012-2015 and then 12 rounds in 2019. My memory loss is awful. I feel like I have dementia, sometimes. I worked as a caregiver for a woman with dementia and it really made me aware of how awful my memory is.... and I'm only 35. A lot of memories never came back. I cannot remember trips, concerts, important family events. I cannot remember my fiance and my first kiss. I still struggle to read books, study, retain information. I want to go to school but I fear it's pointless as I won't remember what I've learned. It's awful. I feel so alone.
I am so sorry. I completely understand this devastating loss of personal identity which happens when we lose our memory. Ours is a memory loss that is difficult to accurately capture unless it's using tests specifically identified in research for their sensitivity to ECT deficits. Most of my memories lost never returned either. It's amazing what I rediscover in in my journal.
With properly sensitive testing, you an qualify for academic accommodations which will strengthen your other strengths to compensate for what are now your weaknesses... I was able to return to school after ECT with academic accommodations and recommendations. School proved a rehabilitation therapy of sorts because it required me to learn compensatory strategies to compensate for what I could no longer do. I hope you find something that can bring you purpose--it's the only way to push through the grieving process of losing so much memory and capacity.
Hi Alison, if you'd like, we have a group of survivors on Facebook. Feel free to join us. Just be sure to answer the screening questions facebook.com/groups/ECTsurvivors/?ref=share
As the partner I share your views and feel grief because of the lost shared memories. Hope you are doing ok ATM
Thanks for sharing.
I had a dramatic violent sexually abuse childhood . I suffer with With clinical depression, PTSD, borderline personality disorder. I haven't been able to work for 3 years my depression worsen , I see a therapist once a week , my Psychology Has prescribed me medication but no success from medication . On the 21st of this month I go in for my first ECT TREATMENT. I'm worried I maybe making a Big Mistake 😕 😔 What must I do suicidal thoughts are title thoughts are close to almost every day and I'm just down everyday the only thing thats on repeat is bad memories.🤔
I'm so sorry. I am so very sorry that things are so rough right now. I can only say that though ECT erased about 95% of my memories, the 5% left behind were my most Traumatic experiences.... with nothing good to balance out the bad or keep me grounded. I understand all too clearly the symptoms of which you speak. I can only respectfully suggest that if your doctor is referring you for a treatment which they have never studied the long-term consequences... that has no safety studies on record with medical device regulators and no dosing limits... it's time to find a doctor with a broader understanding of the underlying symptom cause and how to better support people working through chronic Traumatic experiences like you've described. I also recommend searching out a counselor better equipped to help you process what you've been through so that it's not completely comsuming. If you think your symptoms are bad now, I can only say adding repetitive brain injury and repetitive electrical trauma will not improve the situation any... and long-term consequences can be catastrophic.
My heart is with you warrior.
You are Amazing
Thank you. It's because I hang out with amazing friends. ;)
I am the same way I was diagnosed with bipolar BPD and anxiety. When I was going through a manic episode with bipolar we did not understand they missed diagnosed me in the psych hospital with depression therefore the ECT did not work six years later I also don’t remember a long term at all I miss chunks of my children when they grew up. But I did everything that they said in the hospital I was desperate now I regret doing it because of all the memory loss that I have
I'm so sorry you have experienced the same. Have you been assessed for brain injury rehabilitation? It can provide help with practical strategies to work through some of the memory issues. I created a petition to help people injured by ECT the appropriate rehabilitation. please feel free to sign and share it www.Change.org/PatientSafetyECT
Hope you are doing well.from the Bottom of my heart how many treatments did you receive?
It’s so hard . I’m sorry you suffered so. When one is feeling so poorly is is also hard to make inform decisions and that is if the correct information in sieve effects is given to the patient which in many cases it is not. My partner only had 9 sessions but he struggles with day to day cognitive stuff and as for his memory, I call it fried . Very sad
Yes. Exactly. I have lost the last 30 years of my life due to bilateral ECT treatments. Reading a paragraph and having no idea what it says doesn’t bother me as much (even though reading and academia was my life prior to ECT) as the autobiographical memory being completely gone. Are you still involved in PRA with this cause?
Hi Bridget, sorry for the delayed response. Zero autobiographical memory is very challenging--especially when people stop to consider human identity is interwoven with memory.
Although I presented this at a PRA conference, PRA isn't involved in developing rehabilitative measures for people who've undergone ECT. I presented at. Their conference in an effort to drive home the importance of rehabilitation post ECT. As far as I'm aware, it came of naught...as of October 2018.
If you could please share your story this month on Twitter and other social media platforms using #AuditECT, ECT Survivors are raising awareness about the realities faced by so many of us left to face life after ECT with #braininjury without rehabilitation. You can find more on www.lifeafterECT.com
Hope you are doing well now ...from the Botton of my heart .....how many treatments did you receive?
do you remember people your relevants
116.
What was your diagnosis prior to starting treatments? I thought 9 - 12 treatments were the cutoff point, if you don't have any positive effect from it. At what point of the treatments, did you start noticing that you felt better? If you didn't feel better, that's pretty bad if they kept giving you treatments. That would definitely cause some issues!
Prior to starting ECT, I was diagnosed with treatment resistant schizoaffective disorder--bipolar type with catatonia.
Problem is, ECT is a prescribed closely-spaced repetitive traumatic brain injury. Once a person starts, they are incapable of judgment required to stop. Since I was an adult who'd "consented" given the "ECT saves lives" and "ECT works faster than medication" information I was presented, I was sucked into an institutional nightmare, built to trap the most vulnerable.
Why the defference here in m'y country all of doctors told ect juste 20 sessions for to cet a result no other what that?
What a great question! The difference is because ALL doctors tell their patients that they will only need 8-12 sessions. Then some doctors feel that they should give what's referred to as "maintenance ECT." Since the devices have no safety studies on record with international medical device regulators, there really are no limits. Drs can keep giving ECT as long as they'd like. They only need to tell anyone who asks that it "in the patient's best interest." Sadly the doctors who give ECT are not required to study ECT's neuropathology so they really don't understand how the treatment impacts the brain and spinal column/nervous system so they aren't qualified to say the treatment is in the patient's best interest because they don't understand the long-term consequences.
Mam.. please I need yr help, someone very near to me, is facing with severe effects of ECt ...how should I help that person.. please
I recommend that you help them get in contact with Functional Neurologist or an Ear Nose and Throat doctor to have a videonystagmography (VNG) assessment for balance issues. This test will act as a "Gateway scan" to help them get the brain injury assessments needed. Encourage them to connect with their local brain injury alliance (Like Brain Injury Alliance America, Headway UK, or a similar location in your area to help them get necessary brain injury assessments. They will need to be assessed for executive functioning, visual spatial, and all forms of memory. The neuopsych testing can be expensive, but every university which has a psychology program has assessment courses whose students are always looking for someone to practice assessments on. Students' work is always verified by their instructors. These assessments are provided at a reduced rate because the student is not yet licensed. Their validity is verified by the instructor who co-signs the assessment. Then your friend can use those assessments to search out additional support. Encourage them to do any kind of activity which involves hand-eye coordination. For some reason that is directly connected with memory. So you can actually strengthen memory by practicing hand-eye coordination (Learning to juggle, practicing an instrument, yoga, tai chi, etc). To strengthen their ability to read, it is helpful to get audio books and follow along on the page as the person is reading aloud. Progress is slow, but so very worth it. The most important thing is to have a good cheerleader who will encourage them to remember that the brain is very much like a muscle--it can be repaired in many ways with consistent practice. Make it fun! I am so sorry your friend in going through these struggles and grateful they have you to support them. Thank you for reaching out. I appreciate your patience in awaiting my reply.
I also recommend that you get them in contact with a neuro optic rehabilitation specialist for assessment. You can find one through www.NORAopticrehab.org
How are they now?
Good evening. I'm from Peru. English is my foreign language. Please can you put subtitles I can understand all
I just added captions for you. I apologize for the delayed response, delayed diffused electrical injury from ECT has compromised my ability to keep on top of comments. I sincerely appreciate your patience.
Sarah is this you now or before the ECT?
This video was filmed in 2013, four years after my last ECT treatment (after four years of rigorous, self-imposed rehabilitation) to regain the ability to locate words, public speaking practice, regaining ability to read, etc.
Although I experienced transient episodes of neurological dysfunction in 2010, 2012, 2013, we didn't understand I was likely dealing with delayed electrical injury until 2018 after progressive deterioration began making episodes more frequent and more severe.
Sarah Price Hancock
Your deterioration has progressed to the limitations you currently experience now, today?
Correct.
Sarah Price Hancock
This decline in your neurological abilities started within the past year?
I think we are trying to understand that you went from giving public speeches to your current condition.
I began experiencing abnormal neuromuscular and neurocognitive symptoms 7.5 years after completing ECT. After working with multiple doctors, they began connecting my injuries to what research refers to as Delayed Neurological Sequalea of Low-Voltage electrical injury (Researchers say anything lower than 1,000 volts is "low-voltage"). Evidently unlike high voltage electrical injury, low-voltage triggers a progressive deterioration. So yes, After hard work in self-imposed rehabilitation, I regained the ability to speak publicly after ECT. I enjoyed speaking publicly nearly 100 times for universities and conferences about psychiatric rehabilitation. Now my speaking capacity is limited, but I can speak on good days and on bad days I used an Augmentative Assistive Communication device (AAC). It all depends on neuromuscular/neurocognitive fatigue and how channelopathies are regulating my electrolytes.
what do you say to people's lives that have been destroyed by ect? oh well it helped others? your damage is irrelevant?
+mirrorworldx I always tell them that Damage is never irrelevant. We need to make people aware of the potential severe brain injuries that can result. The problem is, at this point, few doctors will acknowledge the extent of the severity of ECT's effect on the brain when administered certain circumstances. Consequently the doctors administering it are resistant to even recognizing that rehabilitative measures must be put in place.
Another big problem is the positive press given to ECT by people writing their little fluff stories for the Huffington Post or Psychology Today blabbing that "ECT saved my life" or posting about the Benefits of up to 70 ECT in their you tube ""ECT DIARY". Or the TED talk with Sherwin Nuland praising ECT. The horror stories need to be in Huff Post and given in an alternate TED talk. Where is the TED talk by Linda Andre or Mary Maddock or Evelyn Scoggin or less famous victims of ECT
countering Sherwin Nuland's ridiculous story minus type of ECT, voltage, spacing, etc.
ECT destroys lives. It drives people to suicide.
If a doctor cannot "help" someone without causing brain injury, he should quit his/her job.
Yes. I think the problem demonstrates the desperation of people and their family members to fix severe symptoms. If someone is desperate enough for their loved one to feel better, and there is even an inkling of hope that ECT would be better than nothing, they are willing to try it.
Personally, I think the real problem is hiding behind "Informed Consent." Frequently doctors present statistics of how ECT can help an individual --but those statistics are taken from a peer-reviewed journal which is written by a researcher who is probably not using the same technique (machine, electrode placement, frequency of treatments, seizure duration, etc) that the Doctor will actually use on the patient.
For example, my doctor told my family that only 2% of the people have lasting damage. In my research, I found a singular article with that exact statistic--the article was written about a very small sample size and they did not perform a baseline neuropsych exam to see where the client was prior to ECT in their cognitive functioning, consequently having nothing to which they could compare the outcome 6 weeks later. So in that instance 2% is a very deceptive number.
In simplistic terms, the Doctor tells the patient/family "Oh yes! Raw food is good for you. Here is an article on how raw food that demonstrates how well raw food can help you." (Doctor shows research based on eating raw bananas). The patient/family member thinks about those statistics on raw food, and makes their decision to let the doctor administer "raw food" based on the information provided. Doctor administers raw chicken.
Where is the informed consent? There is none.
Sarah P. Hancock, thank you for posting this. My 20 year old son has had at least 20 ECT treatments over the past 2 years to treat severe depression and now he can’t remember any of his childhood or even what he had for dinner last night. I don’t know where to start looking for help or even if there is any hope of making things better for him.
Kelly, I am so sorry to hear about your son's experience and apologize for not seeing your post sooner. To help your son, I recommend connecting with people certified in NEURO-OPTOMETRIC REHABILITATION (noravisionrehab.org/) and a provider who understands clinical neuroscience and rehabilitation. The Carrick Institute has a registry of providers (carrickinstitute.com/become-a-patient/) I hope that helps. Again, I apologize for the delay. I forget to check my comments on videos on a regular basis. My heart is with you and your son.
You also may be interested in signing and sharing my petiton to help people like your son get appropriate rehabilaiton for ECT induced brain injuries. It's located at www.change.org/PatientSafetyECT We now have 10 THOUSAND signatures. 90% of the people who see it, sign it, so share away!