Things They Didn't Mention

In my previous post, I mentioned how the doctor promised ECT would be a permanent solution. He told me all side effects were minimal and temporary. There might be a little bit of memory loss, but it those memories would easily return once treatment stopped.

They LIED. They had no reason to believe this was true. 

Some of the things they didn't tell me (or Jason):

    Not only do you receive anesthesia for treatment, but a paralytic. You will actually be unable to breathe on your own, and your heart actually stops for several seconds. Even when my family watched a treatment, they didn't know this was happening. The doctors and staff are very careful to keep it hidden.

    Your memories will not return

    This is not a permanent cure

    The treatment center will never stop scheduling treatments. They want you to keep going forever.

    There are cognitive impairments that you will need to work hard to overcome, and that will only happen after you've stopped treatments. Hand-eye-coordination will be terrible. Your vision will be blurred off and on. Walking can cause dizziness, and looking from one thing to another (like checking a recipe on your phone, then looking back at the ingredients) will cause confusion.

    I can't tell you how many times I got lost in the parking lot at work, or a grocery store.

    Sudden jerking movements will become common. While driving, you may take your foot off the break or gas. Try stirring food, and you'll flick it out of the bowl. Try using a computer mouse, and you'll throw it across the desk. Try holding your baby and you might drop her.

    Depression will worsen between treatments.

    You will likely have "floaters" or tiny black spots in your eyes for years.

    Migraines are commonplace.

    Maybe this one was just me, but I often get "phanton" feelings like the IV is still in my arm, or the probes are still on my head. Sometimes I get a headache specifically where the probes would have been.

You will not feel anything at times. Your kids will want a hug, and you'll wonder why because it doesn't do anything for you. Your husband will want a kiss or a cuddle, and you'll feel indifferent. 

This may have been explained but I'm not sure. ECT is done in a "series" or "maintenance" phase. I'm pretty sure that a "permanent" cure doesn't need maintenance. But what do I know, I am just a stupid depressed person.

ECT series consists of several treatments, really close together, then slowly easing off the treatments and getting the further and further apart until you can stop treatments all together. (other than "maintenance")

I had 3 series done. Each time I restarted, the depression was worse. I hated myself for causing so much stress on my family. I hated that it wasn't working. I thought (and still often think) that if medication, hospital stays, and the most extreme treatment available don't help me, why should I keep trying? Why bother? When the 2nd series was started, the doctor failed to tell me that I shouldn't drive. I was in 3 car accidents and got written up at work before my doctor said I shouldn't be working or driving.

I don't remember my wedding. I don't remember being pregnant, SEVEN times. I don't remember my miscarriage. I forgot I was divorced and remarried. I forgot over and over that we had new carpet. I forgot about just about everything in my childhood. When I returned to work, I had to use the documents I created for others to use when I was out of office. I couldn't do my job, I couldn't cook, I couldn't bond with my family. Many people think it's funny or that it would be nice to forget things. But I remember the most traumatic parts of my first marriage. I remember the abuse of a high school boyfriend. I can tell you some of the hardest things I've been through. But I don't remember giving birth to my babies. I don't remember falling in love with Jason. I don't remember getting dogs, going on vacations, or anything that happened for 2 years during ECT treatments, and another 18(ish) months after as I relearned so much.

My kids were traumatized by the zombie mom they had. I forgot how to put a band-aid on! My child comes crying with an injury, and I stare at the wall. They have a fever; I push them away. My kids have been through just as much HELL as I have. And they shouldn't have been put in that position.

It would be easy to forgive the doctors, if they would listen to those of us that try to point out what ECT does to a person. But they refuse to accept the feedback from patients. If the ECT doctors themselves won't hear it, why would a primary care doctor or an ER nurse or any other medical professional believe that is what causes migraines or jerking movements or memory loss or any number of other problems? My therapist and psychiatrist believe I have permanent brain damage. 

The worst is trying to explain to others why you can't remember things. Why you can't do things. So many people think ECT was only a historical torture treatment. Many don't realize it is still used to torture people, but now it is called "treatment"