Aging after ECT, episodic paroxsomal neuromuscular symptoms and blood brain barrier

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Aging after electroconvulsive therapy (ECT), episodic paroxsomal neuromuscular symptoms and blood brain barrier:

Doctors familiar with “episodic paroxsomal neuromuscular disorders” typically think of people with genetic disorders that have difficulty regulating a specific electrolyte. These disorders are known as genetic channelopathies.

Electrical Injury CAn Lead to Electrolyte Dysregulation

Electrical injury can also permanently alter how the body regulates electrolytes (Calcium, Potassium, Sodium, etc) causing what’s referred to as acquired channelopathies secondary to electrical injury. 

Unregulated Treatment Leads to Varied Outcomes

I find it fascinating that so many of us have the delayed symptoms of electrical injury but in different ways likely dependent on the unregulated electrical dose, number of treatments received, how old we were when we had ECT, and how long it’s been since we had it.

Electrical Injury 101

In electrical injury, the nerves, muscles, tissues, tendons and vascular systems closest to the electrical entry and exit point are typically the most impacted. That is why people with a history of electroconvulsive therapy risk the subsequent development of oromandibular and cervical dystonias.

However, because the body has a built in safety mechanism, it does not absorb the electric shock, instead it diffuses it through the entire body along nerves (designed to conduct 2-4 mA electric current) and veins (because blood’s high water content also conducts electricity).

Consequently, areas of the body far removed from the electrical entry/exit point can be impacted as the 800-900 mA pulses, arching, through the brain and down the spinal cord.

Yes, there are reports of electrical injury survivors developing delayed spinal cord injuries. I’ve developed symptoms as well, but I’ll save that for another post.

What are Episodic Paroxomal Neurmuscular Disorders

Today I wanted to share with you more information about episodic paroxsomal neuromuscular disorders, specifically cervical and oromandibular dystonias. 

Episodic means it is not a constant problem.

Paroxsomal means that it comes on suddenly without warning–and that it can go away just as fast as it came. 

Episodic Cervical dystonia refers to the unrelenting tightening of muscles in the neck and shoulders.

Episodic Oromandibular dystonia refers to the unrelenting tightening of muscles in the mouth and/or jaw. In the case of electrical injury, both are caused by electrolyte dysregulation at some point after electrical injury to the head.

Both can impact breathing and swallowing.

Examples of My Dystonia

Do you have it?

I know several of us who developed it several years after ECT. That’s how delayed electrical injury works: the short-circuited nervous system gradually loses the ability to regulate electrolytes.

Dystonias Can Be Painful

It can be so excruciatingly painful. I certainly did not consent to having cervical or oromandibular dystonia in the future when I signed my consent forms for ECT. For me, the dystonia is always on the right side. For others, it’s primarily on the left.

Standard Botox Treatment Not an Option After ECT

Personally, I chose not to get the botox because my doctor and I noticed that every time I get an infection of any kind, my dystonia and other neuro symptoms get exponentially worse just before I get the full symptoms of the infection.

Infection Risks After ECT

When my body is just starting to fight a Urinary infection, I will have INTENSE dystonia, and all my memory and cognition will get exponentially worse to the point I put clothes on in the wrong order and get lost in my own home–and then the dystonia and severe cognitive fog and concentration problems go away by the second or third day of the antibiotics (although some antibiotics have high thiol count (Bactrim) making neuromuscular problems exponentially worse.) 

While botox is presently the treatment of choice for unrelenting dystonia, I chose not to pursue botox injections for my dystonia.

For two reasons.

A Damaged Blood Brain Barrier

First this is episodic. Second, I have a weak blood-brain barrier. I didn’t want the possibility of botulism getting into my brain.

I really didn’t care that my neurologist at the time didn’t understand my reasoning … it’s actually part of the reason I kept searching for one who had more experience with electrical injury.

Too many neurologists don’t understand electrical injury sequelea. They get upset with me, thinking I’m just being paranoid. Yet none have offered a test of my blood brain barrier integrity. If they had, they’d realize mine is Swiss cheese.

I’ve tracked these symptoms since 2017. They’re now predictable. They could do a 3T MRI SWI or SWAN to mark blood with fancy MRI sequencing before injecting me with something that acts on calcium ion exchange because tetany seizures aren’t fun–especially when the doctor doesn’t understand ion channels and assumes that because I can hear him whilst I’m violently shaking that it means I’m faking it.

Clearly they’ve never worked with a patient prone to tetany! Thank you delayed electrical injury! 

Life After ECT & the Importance of Air Quality

As I age away from ECT, I’m to the point now that air quality index is a very good indicator for my severe neuro symptoms. If the air quality is “moderate” I have to stay inside unless I want severe dystonia. If it’s “poor” I will begin throwing up and stop breathing within minutes. 

Depending on what’s in the air, sometimes it is the opposite with weakness and paralysis. Sometimes it looks like chorea where my arms are twisting wildly without my control. It impacts my heart rate and can cause arrhythmia which then increases the risk of stroke if I’m in it for too long…

So yes, living with a Swiss cheese blood-brain barrier impacts me in ways I never thought imaginable, consequently impacting my treatment decisions. 

Creating Safe Spaces

That said, one of the things that helped me tremendously is an ionic air filter. It scrubs the air, getting rid of the things which cause such painful dystonia and severe cognitive fog in my home.

My home has become my safe place. I recommend this particular air filter because it puts out negative ions which magnetize to the positive stuff in the air, making it too heavy to be in the air.

Negative ions also help regulate ion channel dysfunction. So this is the brand that I have at a place that seems to sell it for a little less than other places.

It doesn’t clean the air by running it through a filter, it puts out negative ions, so I don’t have to keep spending my money on replacement filters. I just have to wash this one every 6-8 weeks because it is metal. I purchased it last year.

Clean Air; Calm Brain

Clean air helps calm my brain down, reduces brain fog and distractibility. I’m no longer as agitated and can sleep better. When that stops working, I know it’s time to clean the air filter. 🤣

But sometimes the air quality change in the wrong direction is so subtle and slow that cognitive fog sets so thick that I’m pretty loopy.

In those moments it’s a family member, visiting friend, or divine intervention that recognizes and cleans/resets my filter or reminds me to do it.

For our anniversary, my husband bought me a 3M Versaflow Air Filtration system which allows me into buildings I previously couldn’t enter. I’m the modern-day version of the “Boy in the Bubble.”

Other Tips

Two of the other things that help for my cervical dystonia are magnesium oil and radically altering my diet to remove foods that cause inflammation (migraine trigger foods: aged/fermented foods, chocolate, sugar, gluten, milk, etc) and those which dysregulate ion channels (foods high in free thiols: garlic, onion, Spinach, etc).

Diet Resources

For more information on thiol intolerance and foods to avoid, this website is a good place to start Nature Cures Thiol (mercaptan) intolerance

Air Quality Monitoring

Air Filter

Other Resources

(I’m not on commission for this air filter brand links, it’s just the best one I could find for a price that I could save up for the quickest. If you have other more effective and affordable options, please let me know.)

Sarah P. Hancock

Sarah Price Hancock, MS, CRC, lived for nearly two decades misdiagnosed with severe mental illness. She was given 116 bilateral ECT treatments and now lives with delayed electrical injury. Sarah holds a Master’s in Rehabilitation Counseling and taught for four years in San Diego State University’s Rehabilitation Counseling program. She also hosts The Emotional Self-Reliance Podcast and guest lectures on psychiatric recovery.

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