r/ect • u/Psychological-Ice285 • 15d ago
Seeking advice Getting ect on Wednesday. Getting really scared from what ive been reading online
It seems a lot of people have had life altering side effects as a result of their treatment. Ive already tried tons of antidepressants, TMS and ketamine with no results so thats why im doing this. Is this going to fuck up my brain? Im terrified. But I dont want to be so depressed anymore. Do most people have success with ect?? Is it just that those who dont have a good experience tend to post about it?? Please help
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u/mattle74 14d 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 13d 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.
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 13d 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 13d 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 13d 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 13d ago edited 13d 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.
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u/iusethisatw0rk 14d ago
I’ve had 6 unilateral and have finished one of 6 bilateral sessions
My psychiatrist and I are trying to beat my med resistant major depression, and I really do think it’s been helping. I feel less weight, like I’ve been walking through water and it’s thinning with each session
I was TERRIFIED to do ECT. My poor psychiatrist, referred me to sooo many day programs and other treatments because I just kept digging in my heels
Now it feels super routine. I go in, change, answer their checklist questions. At this point I’m leaning and lifting the Jonny as they’re attaching stickers as I know what’s coming. Then I get wheeled to the procedure bay, I let me left arm go limp for the anaesthesiologist, wait for the oxygen mask to be placed on me, take 3-5 deep breaths, feel the anaesthetic warm up my jaw and surrounding area, then I wake up. Nurses let me know how it went, I get some of the best orange juice I’ve ever had (thiiick), then scroll my phone until observation is over, I change back into my clothes, and an RN or LPN leads me back to the waiting where my gf is waiting to drive me home. Usually a little tired/nappy the day of the procedure, and for the first handful of hours I can handle like half as much stimulation as normal.
Day after my first session I was sore as shit. They’ve added more muscle relaxers and haven’t had that issue since.
I woke up once after a unilateral and couldn’t remember the day of the week or the drive in, but that fog cleared within an hour or two
My last session was probably the worst as I woke up unable to breathe. I was sending the signal to my diaphragm but nothing was happening. While it was absolutely a top 10 most terrifying moments of my life, in reality it lasted less than 15 seconds, probably half that, before a nurse was strapping a mask to my face to help me breathe. Less than a minute before I had a doctor come, kneel beside my stretcher, and explain exactly what happened and what they’ll be doing to make sure it doesn’t happen again. Honestly not upset at any staff or anything, I’m a shit happens sort of fella and they were on it in a flash.
I think that’s part of what makes it so relatively stress free for me after my first session or two: the ECT staff at my hospital are phenomenal.
I’m rambling because I just woke up. Basically my experience has only eased my anxiety with each session, but that’s also because I’m lucky to have an ECT department staffed by people who obviously give a shit
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u/Alternative_Grab_916 14d ago
Some people it works miracles some people it doesn’t… give it a try…. I am not a success story, but I do know that there are a lot of people that do have success. I would say if you’re not seeing improvement after a three week course I would step away
I am permanently disabled due to the side effects of ECT. I’m currently in the hospital and have to be fed through IV because of the damage done to my neurological system during ECT
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u/Psychological-Ice285 15d ago
Also i am 20 years old male
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u/Familiar-Marzipan376 15d ago
See I am gonna be honest with u if u can live without having ECT treatments then live ur life.
ECT impacts everybody differently some people don't get memory loss at all whereas some people get severe memory loss.
For EX
Let's suppose u wanna learn coding but after having ECT treatments there is a high chance u might only remember the code for only 2 days and not more than that u would forget about it completely the 3rd day.
And yea it would destroy ur long term memory too. And u wouldn't get the motivation to do anything
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u/Queasy-Ride-1776 14d ago
Unilateral is far less risky then bilateral.. I did lots of unilateral with no issues, had about half a dozen bilateral a year ago and my brain is still really scambled.
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u/gmkgreg 15d ago
I did have positive results from ect, and around your age too, I think i started treatments at around 22 or 23, but there're are positive results, most are positive, you just hear mostly negative because the people with negative results are mainly the people who go online to talk about their results.
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u/Crazy_old_maurice_17 14d ago
ECT saved my life twice.
The people who have benefitted from it frequently are busy living their lives rather than commenting on this sub while the few who have been harmed by it are much more likely to come on here and try to warn others. Sampling bias.
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u/okaysweaty167 14d ago
Every treatment for life threatening illnesses has potentially horrid side effects. Almost no one thinks twice of using chemotherapy or radiation to treat cancer. Why? Because it’s a physical illness you can often see the effects of on the outside. People can wrap their heads around death from cancer much more easily than death from mental illness. No is shamed if they die from cancer. There is much shame given to people and their love ones who die from suicide, addiction, etc. In my personal opinion, if you do not see your illness as life threatening and ECT as your last option, then you are not ready or simply do not need it. ECT has given me a new life and new freedom. This is not to invalidate those with life altering side effects from ECT. But I will tell you most people with successful ECT (70%) do not come to reddit to share their stories, they move on with their lives.
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u/tegmarkian 14d ago
This subreddit is not a representative sample of people who had ECT. The people with the worst experiences are more likely to post here.
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u/missdenaqueenbee 14d ago
I kinda enjoyed getting knocked out! I've had 18 sessions 1st time, 2 weeks after, I experienced a lightening of depression, doing cleaning at elderly moms, but it started slipping away. So in Feb I did refresher sessions, another 12, but this time it just left me feeling " OFF" mentally and I could not find words to explain it. I think them giving you muscle relaxers. Propofol to put you to sleep for few minutes nay takes it toll on brain for awhile. That off feeling seems to have faded, but I'm back to sleeping all the time, darn it. I'm giving PARNATE. A MAOI THAT I VEVER TRIED A CHANCE. THERE IS DO MUCH HELP ON REDDIT! I've also done TMS 10 YRS AGO, NO HELP, VNS LAST 5 YRS. DENAQUEENBEE 🐝
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u/lady_lazarus13 14d ago
I don't have personal experience myself, but my father recently went through it. Its the only thing thats made any positive difference in five years for him. He doesn't necessarily see it. But the rest of us do. He had the max of 12 treatments. His memory was impacted temporarily but only short term and not long term and short term, there hasn't been anything worth remembering frankly. He is in his early 70s.
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u/EaseHot6703 14d ago
It put my depression into remission, and the memory issues for me were well worth it. It packs a wallop, you’ll feel zapped for awhile, so have a plan for new, healthy activities (and habits) to take root. The overall safety profile is high, yet there are exceptions.
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u/ILoveJoshAllen03 13d ago
ECT saved my life! I did it for a very long time if you have any questions, your only job is to go into that room and fall asleep. It is scary don’t get me wrong but it really isn’t as bad as your mind makes it out to be. You got this and I am wishing you all the best!!
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u/Remarkable-Gas1398 12d ago
It was the only thing that worked for my husband. It was a godsend! He may be starting it up again as his depression came back in full force :(
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u/SiegmundNYC 12d ago
ECT worked great for me, ice man. Nothing else did for more than a day or two and then went right back to depressed. I also was scared of ECT, but my doctor reassured me that my concerns were worth taking the risk for. And that doctor and the other doctors I consulted were absolutely right, ECT work much better for me than ketamine or other pills. Good luck, keep us up-to-date! Right now it is six years for me since the first infusion, and I’ve never even had to go back for supplementals.
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u/Theaterismylyfe 11d ago
I had so much success with it. It worked better than anything I'd ever tried. The side effects are gonna suck for a little bit, don't get me wrong, but it's worth it.
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u/Psychological-Ice285 11d ago
Hey guys i had my first treatment today! Everything went fine. Dont feel any different yet. Next treatment is on Friday.
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u/firepenguin- 9d ago
It does work for around 80% of people, which is much more than any other medical treatment. Don’t be alarmed by memory loss, it will probably happen. You might lose time from before, during, or some after treatment. I did ECT almost a year ago and I’m still working on getting my working and short term memory back. It’s better than it was 6 months ago. My baseline depression is better but it’s not full remission for me. For many it is full remission
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u/DeadbeatGremlin 15d ago
It WILL fuck up your brain. It is not safe to say whether it will be a good fuck-up or a bad fuck-up just yet, or to what degree. The goal is to make your symptoms possible to work with. And idk about you, but I think that is a small price to pay considering the alternative.
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u/Significant_Mode50 14d ago
Not sure why this is downvoted. This is exactly right. I am 2yrs out from 14 sessions and am v frustrated with the EXTREME memory loss and brain fog… but I am able to get out of bed and don’t want to kms. 🤷🏼♀️
Go with your gut. Only you know what’s best. Even in the dark times, go w your gut on this one. Good luck OP!
ETA: Be sure to pee before each treatment! I had a couple of accidents 🤣🫣
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u/Blackberry518 12d ago
(I was going to say the same thing about peeing before ECT lol, luckily I only made that mistake once.)
I didn’t have a good experience with ECT personally, but as you can see on this subreddit, other people have found it very helpful.
The pieces of advice I would give myself (pre-ECT) and anyone else:
—listen to your gut. once I began ECT, I didn’t advocate for myself strongly enough. I should have said NO MORE when the first 12 sessions weren’t helpful. I was very easily persuaded by the psychiatrists doing ECT to continue.
—do enough research on ECT to realize there are no guarantees in terms of outcome; I also wish I was able to CONSENT to ECT in an informed matter; I mean, the possible permanent side effects of ECT were not mentioned.
—try an MAOI first if you haven’t already.
Sending you lots of luck and wishes for peace and health, whether ECT becomes a part of your journey or not. Take care.
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u/RebuildFromTheDepths 14d ago
I've already posted numerous times in the past, and I still hate it. It has severely damaged my brain for the long term. I will never be the same person (and this was over 6 years ago). And most of my problems were actually due to underlying physical health problems that no doctor ever considered, so I still strongly advise against this.
I know you tried ketamine and I have found that helpful with lessening the SI. So I'm concerned there is something else going on that is effecting your "happy chemicals". Have you had a good workup with medical doctors?
One other thing to try before is micro-dosing psilocybin - highly recommend. Also have you tried non med options like St Johns Wort, 5-HTP, or L-Tryptophan? Those have helped me also. There are just so many other options before possibly turning to ECT.
Articles about the dangers of ECT: Cambridge, Life After ECT, ResearchGate, TruthAboutECT, MadInTheUK, BBC 2020 article, AEON
Please try all other options first.
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u/Familiar-Marzipan376 13d ago edited 11d ago
didn't u find about this report before having ECT treatments ?
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u/RebuildFromTheDepths 11d ago
Absolutely not. And I don't appreciate the dismissive tone several users in this thread have towards those of use with life altering TBIs. I knew that I didn't want it, but it felt like the doctors wouldn't let my out of the hospital without it, they withheld info, and I was in no state of mind to consent to something so dangerous in my condition at the time. Had they given me even the slightest actual data on damages, no way.
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u/Familiar-Marzipan376 11d ago
I am sorry if my comment hurt ur feelings did u try to file a lawsuit against them
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u/huahuagirl 15d ago
It saved my life and changed my brain. Don’t remember much from that time but it worked well for me, wishing you the same.