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Hello everyone. I drew up a list of everything that’s helped me in this Life After ECT in hopes that maybe something on this list can help you too!
This isn’t medical advice; it’s just sharing tools and tricks I’ve found and discussed with my doctor.
Think of this more like a brainstorming list to discuss with your medical providers as needed.
1. Oxidative stress defense
Eating Beets regularly (several times a week) and taking 1,000 mg of (non-corn derived) Vitamin C 3-4x a day (I use one from Douglas Labs)
2. Check Ferritin
Get Ferritin and Total Ferritin binding capacity blood levels tested. Supplement with ferrochel IF indicated.
3. Get grounded
Sleeping grounded helps reregulate the circadian rhythm and normalize the daily cortisol cycle. (https://doi.org/10.1089/acm.2004.10.767)
4. Low-thiol diet
A low thiol diet will help reduce the severity of the ebb and flow of symptoms (http://naturecures.co.uk/allergies/thiols.html)
5. Daily Breathing exercises
Daily breathing exericises help balance and regulate the sympathetic and parasympathetic nervous systems. (Diaphragmic breathing in through the nose & exhaling deeply through the mouth with lips in a small circle like blowing through a straw).
6. ECT and the Trigeminal Nerve
ECT recipients had nearly an ampere repeatedly pulsed through the trigeminal nerve, which alters how they process sensory input. Silicone ear filters (like to prevent swimmer’s ear) or those akin to what musicians wear for concerts can dampen sound, which in turn will reduce stress levels/cortisol response.
7. Limit time spent on devices/in front of screens
Not only is the visual stimulation taxing on the injured trigeminal and ocular nerves, but all devices emit EMF, and the positive ions can elicit an inflammation–something we’re trying to reduce.
8. Utilize Negative Ions
Negative ions stabilize ion channels in laboratory experiments. I use a Tourmaline bracelet which naturally emits negative ions. I also have Tourmaline “palm stones,” which I can put on my forehead during a migraine or neck spasms, and they help reduce the severity. Negative ions have helped reduce chronic pain and supported neuromuscular function. (Gem and bead shops sell a strand of Tourmaline beads for $15-25 to make your own bracelet. Anionic (negative ions) jewelry is available for a greater expense ($300+) through PürLife or other manufacturers. (I wear a PürLife bracelet with 3,500 cc of negative ions 24/7.) There are other manufacturers, that’s just the one I’m familiar with.
9. Clean air
I cannot reiterate this enough! Repeated Electrical injury to the head alters blood-brain barrier permeability. When I invested in some ionic air filters (they produce negative ions which attach to anything in the air and drop it to the floor), it improved not only my ability to think clearly, it helped improve sleep quality (together with sleeping grounded and a careful low thiol diet)
10. Modified Wahl’s protocol
The Wahl Protocol is basically 8 cups of vegetables daily (low thiol vegetables for people living with EI) with moderate intake of red meat and fish. The micronutrients help enhance energy and stamina.
11. Sunflower Lecithin (Phosphatidylcholine)
Sunflower Lecithin (Phosphatidylcholine) is a phospholipid that supports nervous system function. Considering Electrical Injury damages the cellular lipid bilayer, my doctor has me taking 1-2 capsules with every meal and before bed.
12. Look for ways to be in the moment
Whether that’s sitting outside watching nature while practicing the breathing exercises or doing something manual like learning to “ZenTangle” or something which will require the mind to slow down and focus on a single task while practicing breathing…look for ways to express yourself ( sketching, painting, whittling, ceramics, singing, journaling… whatever fits for you… explore something new!)
13. Weighted blankets
Weighted blankets can help balance the sympathetic and parasympathetic nervous system. A weighted vest or ankle weights can help when out and about.
14. Give yourself permission to heal
Acknowledge healing any form of brain injury and nervous system injury takes time. Choose to stop comparing what life was like before Electrical Injury and what it’s like now. Choose to only ever compare today to yesterday.
15. Find a neurologist who specializes in seizure disorders
They’re more likely to recognize that seizures can potentially cause lasting neurological problems that cannot be seen on a brain scan which can be best supported with comprehensive assessments and rehabilitation as indicated.
16. Assessments to Request
From your GP, request a comprehensive balance, vestibular, and motor assessment from physical therapy and occupational therapy. Request a comprehensive brain injury assessment through a speech pathologist familiar with a cognitive communication disorder.
17. Find a Neuro-Optometric rehabilitation specialist
They are formally trained in assessing for brain injury by examining how the brain is processing the visual stimulus. Improving visual processing can enhance memory. They can also assess whether ocular muscle weakness from EI to the head is contributing to headaches and provide appropriate visual rehabilitation. (NORAvisionrehab.org)
Most of the things listed above are low-cost (with the exception of rehabilitation interventions and ionic air filters).
The game changer for me was finding a neurologist who specialized in seizures and having a GP willing to refer me to be formally assessed for brain injury by a Physical therapist, Occupational Therapist, speech therapist, and vision rehabilitation specialist.
With all their reports detailing my injuries and functional limitations, I qualified for disability which then paid for my rehabilitation.
I really cannot over-emphasize how much these 17 things have helped improve my quality of life. I’ve gathered these tools over the course of years. This isn’t a definitive list, nor is it a checklist of things you must do in order to feel better after treatment. Think of it just as a brainstorming session to consider discussing with your medical professionals. Remember, it’s important to discuss changes to diet and supplements with your doctor before beginning any interventions.
Hopefully, these ideas can help you brainstorm other possible interventions to help improve the quality of life after ECT. You might come up with something that helps that my doctors or I have never considered! I’d love to learn from you!
There is Life after ECT, and there is hope for life after ECT. The darkest hour is just before dawn. Hold on. The light will come.
- About brain injury | Headway
- Brain Injuries for Individuals | Headway
- Aging after ECT, episodic paroxsomal neuromuscular symptoms and blood brain barrier
- Comprehensive Neuropsych and Rehabilitation Assessments for ECT Recipients
- Resources page
- Understanding Electrical Injury – Dr. Marc Jeschke
- Vision Therapy for ECT Injury (Electroconvulsive therapy)