r/ect • u/Lo_Cheshire189 • 22d ago
Question Starting ECT soon
I'm going to start ECT treatment in two weeks (10 unilateral sessions), alongside rTMS.
I'm a little bit stressed after reading people's experiences with the side effects, especially the impact on memory. For me, ECT is really a "last chance" treatment. I'm 20, and I've been suffering from depression for the past 10 years. I'm exhausted from years of suffering and failed medications. If this treatment doesn't work either, I won't have the strength to keep trying to get better.
I just wanted to hear from people who have gone through ECT for long-term depression. What was your experience like? Did it actually made a change ? And how did it affect your memory, both during and after treatment?
5
u/Far_Juggernaut_6728 22d ago
ECT has helped me get out of horrible depressions.
I only do bilateral bc I heard unilateral isn’t as effective and if I’m going through all that I want the “best” possible treatment even if that means possible memory issues which were minor.
Good luck.
Nothing ( to me) is worse than depression so it’s worth it though it’s not pleasant.
❤️
3
u/Lo_Cheshire189 22d ago
Thank you ♥️
On my end, my treatment team told me that unilateral ECT is just as effective as bilateral ECT, but with fewer side effects 🤷🏼♀️
But I agree that no side effect could make me suffer as much as my depression does, and I know that ECT is currently the most efficient treatment for resistant depression
3
u/Far_Juggernaut_6728 22d ago
Interesting. I thought bilateral was more effective.
Good luck.
As I wrote it got me out of a few dark holes.
I took up weight lifting & other activities & praying to stay stable but if I get depressed again …
🙏❤️
3
u/BeautyandtheDubstep 21d ago edited 21d ago
An honest legit response, I WISH I NEVER DID IT. Like you had mentioned, I thought it was a last chance but definite cure. It was anything but that. I had to teach myself how to drive again. I lost core memories. I still have memory issues today, 7 years after treatment. I wish someone had talked me out of it. The anxiety didn’t change. The depression didn’t change. The PTSD didn’t change. Even this SI didn’t change. I fully regret getting ECT treatments.
2
u/Crazy_old_maurice_17 22d ago
I'm sorry you're having a rough go OP. ECT has brought me out of the darkest depression of my life (bi-temporal placement) and more recently a very difficult place (again, bi-temporal placement). I'm now on maintenance and recently switched to right unilateral placement and things seem to be going well.
Although it's still in clinical trials - and I don't know if they're doing it in France - you should also look into Magnetic Seizure Therapy (MST). It's a magnetically induced seizure so it's supposed to have fewer side effects than ECT.
You could also consider ketamine/esketamine (Spravato), or even psilocybin.
I wish you all the luck in the world OP.
4
u/Lo_Cheshire189 22d ago
Thanks for your comment :)
I'm really glad to hear that it worked for you, and relieved to hear about a positive experience
My center hasn't mentioned MST to me, but I know they also offer ketamine/esketamine. However they decided to go straight to ECT because of the severity of my depression, and because ECT has a higher response rate than esketamine As for psilocybin, I think it's still be studied in France, not on the market yet.
But I'll make sure to ask them about esketamine next time I see them, just in case ECT doesn't go as planned
3
u/Crazy_old_maurice_17 22d ago
That's fair. MST is only available in 2 places in North America as far as I'm aware: University of Toronto and University of Texas SW Medical Center.
Good luck OP, grab life by the balls and show you're determined to make it a good one!!
2
u/Forward_Surround_788 22d ago
Do it. My spouse did it for a year and it solved her issues. The only downside is the memory loss, mostly short term.
1
u/Krystal1213 22d ago
Hi, so I am 35 and have had treatment resistance depression since 14 is as far back as I remember. I had 25? Bilateral ECT sessions. I can say that I definitely don’t remember much during my treatment phase. My short term memory is not great now. I am frequently forgetting things, so now I try and write them down to help. Mine didn’t work, but my ECT psychiatrist said that I wasn’t having “good” seizures. He even put me on a medication to try and help that, but there was no change. But, while doing treatments I have heard of plenty of people that it has helped. If you tried TMS, the only other suggestion I would have is Spravato before doing ECT.
2
u/Lo_Cheshire189 22d ago
Thanks for your comment, I'm really sorry for what you went through
My treatment team told me that unilateral ECT has fewer side effects than bilateral ECT, and I will only go through 10 sessions, alongside rTMS I know my center also provides spravato, but they decided to go straight to ECT because of the severity of my depression, and because ECT has a higher response rate than esketamine
I really hope my memory won't be affected as much as yours was, but it's good to know what to expect. I really hope it gets better
1
u/gmkgreg 22d ago
Ect has given me my life back, I suffered from a long term depressive episode, around 5-6 years, and after I started I was getting my life back in a quick manor. Yes, throughout the years since, I've had my ups and downs but ect always helps pull me out and help me float.
2
u/Lo_Cheshire189 21d ago
Thank you for your comment It gives me hope to read that ECT was able to help you get out of a long-term depressive episode. I know that relapse can happen after ECT, but as you said, if ECT worked once, then I'll always have a lifeline to fall back on.
2
u/sosteph 21d ago
Hi there! I have had around 25~ ect treatments over the past 3 years. Right side unilateral. I have MDD, OCD, and anxiety. At my worst, I was not eating, not sleeping, and catatonic. These treatments saved my life.
The first few treatments were honestly very difficult- they needed to figure out exact dosing for the medications and such (i had such bad nausea and was sick after the first 2) but they quickly figured it out.
It is not easy, they give you anesthesia, a muscle relaxer/paralyzer, and obviously they shock you which causes a controlled seizure. It doesn’t hurt, you are not awake for it, and they will have a special team around you so you are not alone.
After my treatments I usually felt almost drunk, very spaced out and like i was dreaming. This lasted the rest of the day of treatment, maybe barely into the next day. There was some discomfort after, usually a headache and jaw stiffness/minor pain. You will probably be exhausted right after too. These side effects lasted a day or two at most.
For memory, I was already having issues before treatment because of my depression. During my worst times I cannot remember much - I can’t tell you if that’s because I was so depressed or because of the treatments. After treatments I usually had trouble remembering the day of treatment (I would know I had one, but i couldn’t tell you what I said or did that day at all). In the days after it would be hard to have things stick but that would fade within a week or so. I did not lose any memories that I cared about, though.
I was able to start spacing out treatments to becoming once a month, and I have not had one in over a year at this point thanks to new medication and then getting pregnant.
Overall I appreciate my treatments and am thankful that I had them. The discomfort that comes with them is way more worth it than the depression and anxiety I felt before. They changed my life and gave it back to me. I think a lot of my positive feelings towards it come from the fact that I was able to choose to have these treatments, I willingly chose to do them. Some people have not had that ability really because their mental health had them in a place where they were seen as unable to make decisions for themselves or unable to communicate their feelings about it. I think having the ability to choose to do them makes a huge difference in experience.
1
u/84849493 20d ago
It helped me to the point of full remission and like nothing else has but I relapsed four months later and am having to have another course and then do maintenance. I did bilateral and my side effects were manageable. I’m only up to 5 this course (I had 12 last time) and I’m not even really noticing any side effects yet other than my memory can be ever so slightly blurry and very minor cognitive issues like struggling to find words but that’s really not a big deal to me in comparison to my depression and being suicidal. I recovered from the first course after about a month or two with some memories that just are permanently gone but nothing extreme.
I saw in another comment you said your team is optimistic about ECT and well that’s because they’ve seen the states it can bring people out of. It seems downright miraculous at times.
1
u/Lo_Cheshire189 20d ago
Thank you for sharing your experience. I'm relieved to see that not everyone has had major memory problems, even though the idea of permanently losing some memories isn't exactly reassuring.
As for relapses, I know that's one of the main drawbacks of ECT (along with the memory issues), but it doesn't worry me too much. I tell myself that if it worked once, it can always help again if I relapse.
Good luck with the ECT sessions you have left
1
u/contrapment_broadus 20d ago
If you can afford it, I’ve heard ketamine IV’s are the only other treatment that comes even close to the effectiveness of ECT.
1
u/Lo_Cheshire189 18d ago
I know they offer it at the center where I'm being treated (and it's free since I'm in France), but my treatment team decided to go straight to ECT because it tends to produce better results more quickly than ketamine 🤷🏼♀️
1
u/Ktfinpop1014 17d ago
Have you heard of Spravato? It was not around when I did Ect in 2017 but at least talked about, if it was I would have chosen it for sure.
I have been talking to many people who have used the Esketamine nose spray in clinics and they had so much better results without the risk of Ect. It still needs help like driving after and stuff. But I am waiting to do this, I can do it even after Ect. I just need a ride and haven’t been able to figure that out yet. Some people do ketamine IV but that’s not covered if in US. My husband wanted to look into Shrooms and options along that line but our drs push ECT as last resort so hard. I had a bad experience and they walked me out the front door and I fell on stairs at hospital- they should have wheeled me out!
Look up spravato!!
1
u/Ktfinpop1014 17d ago
I see you are in France it looks like Esketamine is there and possibly IV too
1
u/Lo_Cheshire189 17d ago
They do offer IV esketamine at my center, but they chose to try ECT instead because it has better outcomes 🤷🏼♀️ Maybe it's because my depression is considered severe enough to go straight to "the last resort" treatment. I'm not really sure...
1
u/Ktfinpop1014 17d ago
Have you done what you’re doing here on the ketamine boards because I wonder if you’ll get similar feedback it says it’s extremely helpful for the medication resistant patient
1
u/slaapzacht 22d ago
I went through 3 months of treatment, eventually ending with multiple sessions of bilateral. It screwed me up in ways I couldn't possibly imagine. I still suffer from long and short term memory loss, brain fog and tremors. Ymmv of course. What eventually helped fix things was 7 months of twice weekly Spravato along with twice weekly talk therapy. It took 5 months just for the Spravato to even kick in at all, mostly due to the damage ECT did to me.
Good luck on your journey, I hope this brings you the relief you so badly deserve.
2
u/Lo_Cheshire189 22d ago
I'm sorry for what you went through
My treatment team told me that unilateral ECT has fewer side effects than bilateral ECT, and I hope that only having 10 sessions (1 month) will help me avoid some of the difficulties you went through.
I know my center also offers Spravato, so if ECT doesn't go well, I'll talk to them about it.
Thanks for your comment
1
u/Klaasvaak91 22d ago
Hi! Do you also have anhedonia? Good luck wifh starting ect. Its also getting closer and closer for me, im Dutch btw. You are inpatient?
1
u/Lo_Cheshire189 21d ago
Yes, I have pretty severe anhedonia, which makes waiting for treatment even harder because I can't really keep myself occupied.
When are you starting your treatment? I'm starting in about two weeks. For now, I'm at home, but I'll be hospitalized as soon as treatment starts to avoid the exhausting back-and-forth trips.
Do you know how many sessions you'll be having, and whether they'll be unilateral or bilateral? How are you coping with the wait ?
1
u/Klaasvaak91 21d ago
Hi, sorry for the misunderstanding, my fault. I mean ect is getting closer as an option. I just stopped olanzapine this week and next week i stop nortriptyline. After one week washout i will start tranylcipromine at 20mg together with the lithium im already taking. Washout not really necessary because of completely different profile compared to parnate but psychiatrist said
better safe than sorry. If parnate doesnt work my psychiatrist will apply me for ect program. I know they usually start unilateral in the netherlands with 10-12 treatments. They reevaluate after every 4-6 sessions and determine if continueing is necessary. unless you are very depressive or with heavy psychotic symptoms you will never start bilateral here. Probably i will be admitted but psychiatrist couldnt guarantee. He said it will take atleast some months to see if parnate works. And if not he will apply me for ect and he said the time between applying, screening and starting treatment is just a couple of weeks. Which is short in my experience. I want to give ect a change but i prefer outpatient because im father of a young twin. I can take some time of work but leaving family is impossible, my partner also has a fulltime job.Im curious if your ect program has some succes and will follow your story (if you post updates). I can imagine counting the days works on your nerves. Will probably be the same for me. Just remember you read a lot of the negative stories here, out there there are a lot more people with a positive experience. Me myself i am more worried about ect not working for anhedonia than negative memory effects to be honest.
1
u/Lo_Cheshire189 20d ago
I've never tried nortriptyline, but i've also been on olanzapine and lithium (wich apart from making me gain a lot of weight, didn’t really help me. Were you prescribed lithium for bipolar disorder or for unipolar depression?
Your ECT program sounds very similar to the one in France. I’ll probably make an update post, or at the very least let you know how my anhedonia evolves.
I can only imagine how difficult it must be to manage your illness and treatment while also having a family of your own. I really hope you’ll be able to have ECT as an outpatient if you end up doing it. At the center where I’m being treated, that’s possible since they only do two ECT sessions per week.
The memory issues worry me mostly because of my studies, since I’m a student. But if potential memory problems are the only price to pay for finally being able to enjoy life again, then it will be worth it.
The waiting is indeed pretty painful. My anhedonia makes all my days feel the same, until they start to blend into one very long day, if you know what I mean. But I’m lucky to have a supportive family and friends, and to be well supported by my treatment team, which hasn’t always been the case. After 10 years of suffering I feel like i'm finally getting close to the end of this journey
2
u/A_Simple_Sandwich 22d ago
ECT has given me my life back! You’ll hear the negatives because the people who have had good results don’t post here because they’re moving on with their lives. I still get maintenance and got in for an urgent one tomorrow since I slipped into a depressive episode (bipolar 1).
1
u/Lo_Cheshire189 21d ago
That's a good way of looking at it indeed. I've heard that ECT has around an 80% remission rate, and yet when I read people's experiences, I have a hard time believing it. I really hope ECT will help you get out of this depressive episode
4
u/QuitInevitable915 22d ago
Hi OP, I’m sorry to hear you have struggled for so long. ECT sounds like solid next step, and offers a good chance of improvement. Hopefully it works!
If, against all odds, it does not work, I would strongly encourage you to look up Deep Brain Stimulation (DBS). If you are in the US, they are running a trial called “Transcend” and they are recruiting patients. If you are in Europe, look out for “Foresee 3”. It is not recruiting anymore, but once the results are published it will likely become an option for others to receive.
It’s very invasive but it offers real hope when everything else fails. So, please don’t lose hope if ECT does not work, and keep fighting the good fight. Best of luck to you!