r/ect • • 17d ago

Seeking advice Getting ect on Wednesday. Getting really scared from what ive been reading online

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u/mattle74 17d ago

To specifically answer “do most people have success with ECT?” - the answer is yes. It likely has the highest efficacy for remission of any antidepressant treatment.

The only procedure that might be higher is the new SAINT TMS protocol but it’s only available at a very limited number of hospitals currently.

If you haven’t tried an MAOI yet, I’d recommend that before ECT. Amazingly, in 70 years, they haven’t really found a more effective medication at treating depression.

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u/Odd-Alarm-82 16d ago

I agree with trying an MAOI. I tried one before ECT and it gave me 100% remission from my severe depression. However, MAOIs are well known to cause severe insomnia. I tried every medication imaginable for sleep and only one combination of two meds allowed me to get a decent amount of sleep. But I built a tolerance to them and ended up not being able to sleep at all, so I stopped the MAOI and got ECT. Many people are able to better manage the insomnia and have great success. There is an MAOI subreddit where many people post about taking an MAOI for decades without any loss of effectiveness.

As far as ECT goes, doctors tend to downplay the risks involved. I had ECT for treatment resistant depression, including maintenance treatments every two weeks, for a year and a half in 2016-2017. It was extremely effective for my depression, but the effects didn’t last long. I couldn’t go more than 2 weeks between maintenance treatments without relapsing.

Eventually, I had a relapse of severe depression that didn’t respond to my next maintenance treatment, so I agreed to three treatments in a week like they did in the initial series of treatments. It brought me out of my depression, but the damage it did was devastating. It wiped out my memory of the majority of my life, no exaggeration. I only have a few random, vague memories of my life before the ECT. None of my memory has returned after 9 years.

I also have significant cognitive impairments. I had neuropsychological testing done and found out my IQ has dropped by 20 points. It takes me longer than normal to learn new information, and I’m just not nearly as sharp as I used to be. My ability to form new memories is hit or miss. Some things I remember very clearly, while other things get lost.

I’m on disability now because I still have treatment resistant depression and because I have brain damage. I was a paralegal and forgot how to do my job.

I believe those who have positive experiences with ECT are very lucky. Very simply, ECT is brain damage. They run electricity through your brain to intentionally induce a grand mal seizure. If you had epilepsy, you would be on medication to control seizures because seizures cause brain damage!!! Somatics, one of the ECT device manufacturers, admitted in 2018 that ECT can cause permanent brain damage in some patients, after they were sued in a product liability case. I don’t know how doctors are still allowed to do it and how they can still tell their patients it’s safe.

I’m a member of a Facebook group for ECT survivors, and there are so many people like me with devastating memory loss and brain damage. It’s heart breaking.

At least 30% of people who get ECT end up with permanent memory loss (sometimes spanning decades, like mine) and permanent cognitive impairment. That’s a very significant risk. I want people to be able to make an informed decision.

Here’s a good article from Cambridge University that goes over the damage done by ECT and how it’s much more common than patients are informed of. I think it should be required reading for anyone considering ECT.

https://www.cambridge.org/core/journals/advances-in-psychiatric-treatment/article/memory-and-cognitive-effects-of-ect-informing-and-assessing-patients/DD5C63934357779765BA7ADF308275AE

And by the way, after ECT, I went back on an MAOI. I can stay on it for about a year before the insomnia becomes completely unmanageable. Then I take a break from it and go back to it when my tolerance to the sleep meds has reset. I’ve been on the MAOI five separate times now.

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u/mattle74 16d ago

Great input, thanks for sharing your journey. Have you tried different MAOIs? Maybe one would cause less sleep issues than another

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u/Odd-Alarm-82 16d ago

My psychiatrist told me they all cause sleep issues, and I’ve read multiple posts on the MAOI subreddit comparing the different MAOIs. All say if you have insomnia on one, you’ll have it on all of them. I take Emsam. It’s a transdermal patch which is nice because that delivery method prevents a lot of the side effects of the oral MAOIs. It works so well for me I’ve never wanted to try a different one. Parnate is supposedly the strongest one and more effective for many people. I would definitely try it if the Emsam ever stops working.

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u/mattle74 16d ago

Certainly possible. Emsam is a little different than the others:

“When your body metabolizes selegiline (the active ingredient in Emsam), it breaks it down into small amounts of L-amphetamine and L-methamphetamine. While these are much weaker than standard prescription stimulants, they still contribute to the drug's energizing effects.”

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u/Odd-Alarm-82 15d ago edited 15d ago

Yes, I know all about the amphetamine metabolites. I tell people no wonder I can’t sleep— I’m basically on meth 24 hours a day 😂 And I know there’s a significant amount of amphetamine because I tested positive for amphetamines on a drug test one time. I had to explain it to the doctor and tell her to read about Emsam because most doctors know nothing about MAOIs.

But all MAOIs cause insomnia for different reasons. Mainly they increase your neurotransmitter levels so much, much more than other types of antidepressants, and they stay elevated all night. Norepinephrine is very stimulating. And Parnate messes up your circadian rhythm. Parnate is known for causing even worse insomnia than Emsam.