my story with ECT

Oct 12, 2013, 12:06 PM

Quote:

Originally Posted by dicejam

just a random update. my psychiatrist talked to the doctor who administered my ECT, describing the cognitive and memory problems i've been having. the doctor said that he's never seen anything like that before, and that he doesn't believe it's possible that the ECT is causing my symptoms. his position is that ECT only sometimes leads to a brief period of short-term memory loss and surely could not be affecting me 9 months after treatment was ceased.

this, to me, is absolutely absurd. there are hundreds of accounts of people who have experienced detrimental long-term effects from the treatment, and many of their stories are similar to mine. for the doctor i basically trusted my life with to be so grossly misinformed and dismissive about something like that really adds insult to injury. the one person who should understand and/or be able to help me basically saying "you're out of luck, pal!" just makes me feel pretty bad.

memory is getting worse without a doubt... some pretty absurd stuff. if i have something in my left hand and pick something up with my right hand, i often forget the nature of what's in my left hand and spill/drop it if it happens to be something other than a single solid object. i get lost on roads in my own hometown of 27 years and somehow end up driving in circles every time i go somewhere. i'm always afraid i just missed a stop sign or went through a red light, because my memory is so short that i'm not completely sure what just happened. for all i know, i actually am missing stop lights. it's getting to the point that it's probably not safe for me to drive anymore.

another really weird one... if i'm sitting or laying down and have my eyes closed, after a little while all memory of where i am, what time it is, and whether it's light or dark outside goes away for a few seconds. i'll be laying in bed and it's almost like my brain has a 5-second experience in which i can feel myself laying on the couch and see that situation from my perspective. similarly, if my eyes are closed and the tv is on in the background, i will immediately completely forget what show it is, even if it's something i watch all the time. it takes like 10 seconds of hearing various voices talking before i have any ability to recall what i'm watching.

also, just been plagued with a lot of paranoia and weird thoughts about how the universe works lately. i know that i'm not schizophrenic, but i feel like i'm teetering on the edge of what could objectively be called sanity. all i can really do is try to laugh at the absurdity of the whole thing and hope it gets better, i guess.

I had bilateral ECT 20 years ago and have many of the same long term side effects. I was told it could not be from the ECT, but recently I found a staff training video in the staff library of the psych hospital that warned of these exact side effects. I lost many parts of my life and I still struggle with short term memory. I also lost my sense of direction. these are possible and real side effects.

pachyderm · Oct 12, 2013, 12:07 PM

Quote:

Originally Posted by 1914sierra

Never mind. You don't "hear" what I am saying.

Likewise.

-jimi- · Oct 12, 2013, 12:41 PM

The problem with ECT is that you cannot predict how much of your memory will be affected. I know someone who had one single treatment and he has very poor short term memory now. I also know people who had no worse memory loss than just around the time of the treatment and had good help. But I also know those who had their whole life history wiped out, including how to do their job. Those had several treatments since the depression came back and they was put on a routine. One I talked to had almost 100 treatments! (This individual wished the treatment would finally wipe out memories from childhood abuse but it never happened, only the good and newer memories disappeared.) All weren't like him though, most just did what they were told.

From what I can see, when you are informed you are getting the nice version, that you "might" have SOME memory issues. Just last decade people were told it was "proven" that NO long term memories issues could happen! Now they say it is rare. Still, it is like Russian roulette. You have NO idea if it will be you that has severe memory wipeout.

The scariest is that in many places this is done without consent. That is really horrifying.

Otter63 · Oct 12, 2013, 01:08 PM

I have a relative who is a psychiatrist. She is convinced that ECT is completely safe and effective. I told her about a friend's cousin whose life was totally destroyed by it. Her response was to deny that that was possible.

Like the OP's doctor, they simply repeat what they believe and throw out any evidence to the contrary. Blows my mind. If doctors don't report the negative outcomes, then people continue to be only partially informed.

I'm not for or against ECT, but why refuse to believe the obvious (that the outcome can be very bad). I do realize that it helps many people, but we should not ignore the other possibilities.

dicejam · Oct 12, 2013, 03:26 PM

yep, exactly. i see how ECT could potentially be an effective treatment, even if it wasn't in my case. i don't believe that it's inhumane. the problem is that (at least in my experience) doctors fail to understand the potential severity of side effects and make them sound like an afterthought while explaining the treatment to you. when you're depressed and desperate, you're going to listen to the doctor if he tells you that there is no risk of long term damage. people just deserve to be better informed on what can happen, even if the cases are rare.

dicejam · Oct 12, 2013, 03:45 PM

Quote:

Originally Posted by Calista+12

I'm so sorry you are having this horrible experience. I tend to believe what your doctor said though. What you are experiencing almost sounds like a neuro issue unrelated to the ECT. Is there a way to be neuro tested...see a neurologist or have a second opinion with a psychiatrist? This isn't the "normal" cognitive impairment expected with ECT. I hope you have some luck figuring this out.

thanks

my psychiatrist is in the process of contacting the head of ECT treatment at a major hospital and a neurologist that he knows in order to try to figure out what's going on. i have to give props to my psych guy, i really do believe that he cares about me.

i'm 99.9% sure that my problems are being caused entirely by how ECT affected the way my brain works, based on the timelines of what happened and my overall experiences. it's within the realm of possibility that i'm wrong, but i think that if you could experience what i've experienced you'd see it the same way.

caseygirl · Oct 21, 2013, 04:36 PM

I had a horrible series of ECT'S - 77 to be exact, yes, that's right 77! Did it help with the depression -NO. Basically, I was medication resistant for major depression and I think they ran out of remedies, and threw me to the ECT wolves.

My long-term memory is shot. If I didn't have journals pre-ECT, or people telling me this and that, I would only know life from 2003 until now.

You would think after ECT #25 that obviously they weren't working. Why did I agree to 77? I was hoping for a "cure", just like chemo for a cancer patientS. Each ECT I would have, I prayed that would be the one that would "cure" me. WRONG.

Bird Feeder · Oct 21, 2013, 06:53 PM

Caseygirl....has anything worked for your depression? I have only had 7 ECT treatments and have not noticed any improvement. In fact I think I am worse because I but so much hope into it:-(.

Thank you

caseygirl · Oct 22, 2013, 06:31 AM

Quote:

Originally Posted by Bird Feeder

Caseygirl....has anything worked for your depression? I have only had 7 ECT treatments and have not noticed any improvement. In fact I think I am worse because I but so much hope into it:-(.

Thank you

Finally I found a doc who knew what he was doing, put me on the correct meds (can't remember 10 yrs ago). I was with that doc for many years and was diagnosed as bipolar, but I started with a new doc and he did quite a bit of testing and didn't think I was bipolar in the first place. I showed one sign of "mania" (hyper really) back then so diagnosed BP, but always major depression. These ECT's did absolutely Zilch, and what I am miss most is my long term memory.

In our city, it seems everyone with mental illness and depression seems to be diagnosed as BP.

My advice, be wary, and if you think ECT isn't working be your own advocate. For me, I was just so sick I didn't know which way was up. My family thought my pdoc was god so agreed with him. Don't go soley by me though as I have heard that they are successful in some people.

vanessaG · Oct 29, 2013, 11:41 PM

I will never do ECT again.

The memory loss (short & long term) is too much...esp being a parent and i have NO idea what my child is referring to sometimes. AND the fact that it didnt work. It was a pain, i started bilateral treatment inpatient, then outpatient. Couldn't drive.. Still depressed shortly after. Not worth it in my experience. I think the best part was the feeling of being put under general anesthesia!

Nobodyandnothing · Oct 30, 2013, 02:40 PM

Vanessa, I do understand what you are going through. I hate that I have lost memories of my children's childhoods, but I did like the anesthesia part like you did. No ECT ever again for me.

dicejam · Nov 01, 2013, 03:14 AM

Quote:

Originally Posted by vanessaG

I think the best part was the feeling of being put under general anesthesia!

haha... i totally loved that. for some reason it was fun when they'd count down and you'd drift off into unconciousness suddenly, always looked forward to it.

KittenE · Nov 03, 2013, 07:09 AM

So....I had ECT on and off "acute (3x/week) to maintenance (1x/2wks) for about 4 years, just ended in June 2013. At first, and for a while, the ECT really did help me to feel better. I even kept working P/T while I was in tx. I had no real memory problems for quite a while, then noticed I had no "internal map" of this city that I lived in for over 25 years, and did not remember places where I used to live. I started to lose other long term memories, including my son's childhood, major vacation trips, etc, about a year and a half ago. My depression relapsed so deeply I was inpatient more than out (6x admitted over the course of Mar-July 2013), and in fact, while I wanted to continue w/ECT, my ECT pdoc decided to stop and refused to treat me: due to the memory/cognitive effects and b/c it was not helping anymore.
I would say the same thing about ECT as any other tx for mental health problems: the tx that works depends on the individual and their unique response to it.
In terms of considering ECT or not, definitely check out the latest research studies before agreeing to it. Know that you don't know how it will affect you until you try it. Know also that there are many other, "non-traditional" paths to wellness as well as the more popular medical ones.
Good luck to everyone...feel better soon!

Nov 05, 2013, 07:33 PM

If it wasn't for the bad problem solving in math and the writing difficulties, I would do it as a last resort as the chances of it being this severe isn't likely I'm sure of. I don't remember much of my life anyways. But yeah I would do a lot of research before I decide to do it. There is still that magnetic thing and deep brain stimulation..

Edit: Even after reading about the terrible side effects, it comes to show how desperate I am.

dicejam · Nov 08, 2013, 05:26 AM

yeah i mean, the effects suck but i'm alive i guess. i don't think it was a poor decision to go through with the treatment -- i was days away from suicide, and i most likely was just really unlucky with the severity of the side effects. the fact that it made significant changes to the way my brain works leads me to believe that it could be an effective treatment for depression for some people. it's an extremely inexact science though, and i guess the changes that ended up happening in my brain were the wrong ones.

it's just incredibly frustrating for every ECT doctor who has been consulted by my psychiatrist (including those who treated me) to deny that there's any chance that ECT was responsible for what happened. it's kind of like if you were hobbling around on one leg after an amputation, and all of the most prestigious doctors in the world told you "there's no way you could possibly only have one leg."

Bird Feeder · Nov 09, 2013, 10:42 AM

I had a series of 12, not sure if it did any good. I wanted a light bulb to go off. I wanted to feel amazingly happy....nothing really happened

. If it wasn't for wetting my pants a few times during the seizure I would think they didn't give it to me at all. Oh we'll, at least no memory problems either.

Tapering · Nov 28, 2013, 04:06 PM

Thanks for posting your story. I don't think they really know what ECT does. I would rather we not have it around at all, but if we are I think it should be studied as to efficacy and side effects. Your experience sounds like other people who have had ECT.

ilive4music · Dec 10, 2013, 02:33 PM

Quote:

Originally Posted by 1914sierra

Actually it does work quite well for many people, and it is not inhuman at all. This isn't One Flew Over the Cuckoo's Nest. Does it work for everyone, no. And patients need to be educated about the treatment and possibly side effects, but it is an option that has saved my life more than once. A close friend and my husband also had ECT with very good results.

When people think of ECT they automatically think of that movie....

In my personal experience if it was not for ECT i would have killed myself, that was my plan. I was sick of trying different medications, losing friends, dropping out of my college classes.

The doctors explained to me about the memory loss, and believe me it's not something that I was looking forward to. Yes I have lost memories but I did not have any other option. It saved my life because like I said my only other option was to kill myself.

ilive4music · Dec 10, 2013, 02:35 PM

Quote:

Originally Posted by caseygirl

I had a horrible series of ECT'S - 77 to be exact, yes, that's right 77! Did it help with the depression -NO. Basically, I was medication resistant for major depression and I think they ran out of remedies, and threw me to the ECT wolves.

My long-term memory is shot. If I didn't have journals pre-ECT, or people telling me this and that, I would only know life from 2003 until now.

You would think after ECT #25 that obviously they weren't working. Why did I agree to 77? I was hoping for a "cure", just like chemo for a cancer patientS. Each ECT I would have, I prayed that would be the one that would "cure" me. WRONG.

Have you tried TMS? Or any research studies?

ilive4music · Dec 10, 2013, 02:40 PM

Quote:

Originally Posted by 1914sierra

Electroconvulsive Therapy (ECT): Q&A with Sarah Hollingsworth Lisanby, MD - DukeHealth.org

Here is a pretty objective article about ECT's benefits and risks.

Aside from the memory loss ECT causes it has a better outcome than the medications do..

ilive4music · Dec 10, 2013, 02:43 PM

Quote:

Originally Posted by vanessaG

I will never do ECT again.

The memory loss (short & long term) is too much...esp being a parent and i have NO idea what my child is referring to sometimes. AND the fact that it didnt work. It was a pain, i started bilateral treatment inpatient, then outpatient. Couldn't drive.. Still depressed shortly after. Not worth it in my experience. I think the best part was the feeling of being put under general anesthesia!

I thought I was the only one!! But that is a pretty cool feeling

Dec 13, 2013, 09:14 AM

** sorry - I tend to get nit-picky about stupid stuff. But MLKjr was not the 2nd most famous assassination. Lincoln, JFK and then maybe MLK

kittlies · Dec 14, 2013, 10:21 AM

Thanks for posting this. My doc has suggested ECT for me and I am going to say no.

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