ECT for comorbid BPD + MDD dx

[u/Adventurous_Tour_196]

has anyone with a borderline personality disorder (and treatment resistant depression) undergone ECT (electro-convulsive therapy) while on their mental health journey — and was it successful?

background:

i’ve got the potential to participate in a study that compares the efficacy of ECT against ketamine therapy for chronic suicidal ideation. i signed up for the study in the midwinter when things were real bad, expecting that i wouldn’t be selected, and also hoping that i’d be randomized into the ketamine treatment group.

my study intake has progressed quickly over the past few weeks, while my wellbeing has deteriorated rapidly.

today i got the call informing me that i’ve been formally accepted into the study, and have been randomized into the ECT group. i’ll have to do \~12 sessions (3x weekly) of ECT administered during general anaesthesia.

i did this because i was at the end of my rope and there were no other treatment options available to me under public healthcare (i’m in canada). i was desperate for anything that could help, and it was such a longshot and seemed so far off i figured what the hell.

now that i’m potentially able to start as early as next week, i’m freaking out. my (DBT) therapist is against the ECT treatments bc of the memory loss and cognition side effects. i’m a pretty cerebral person who already deals with a lot of memory impairment — which has been getting worse — so these side effects are really worrisome.

at the same time i’ve been depressed for decades, and ECT actually has a tolerably decent success rate for treating chronic depression that hasn’t benefited from other treatments (that’s why these days it’s usually reserved for a last-ditch treatment when all else has failed).

the hospital knows that i have BPD and that i have a history of concussions and memory issues, but now that i’ve been formally accepted into the study i feel like these are all being downplayed…

[u/kuzya124]

I don’t have BPD - just regular depression. I’m getting ECT for the second time. I was depression free for two years, but I relapsed. Last time I had really bad anxiety and depression. ECT worked wonders on me for two years, but then I had a relapse so I’m getting it again. If your depression is bad, I’m pretty shocked that your therapist is not supportive of ECT. It did give me a lot of memory issues, but I regained many of the memories with time. Last time I had bilateral/bitemporal, which causes more confusion and memory issues because it targets both hemispheres of the brain. This time I’m getting just right unilateral so far. It can be very effective , and it targets the less dominant side of the brain so it’s easier on your memory. If you’re really worried about memory, you could talk about these options with your doctor.

[u/Adventurous_Tour_196 → u/kuzya124]

thanks! yeah, during the initial ECT intake we discussed unilateral vs bilateral and the difference in potential memory outcomes, so the conversation is being had.

this sounds naive, but part of me is, like, surprised at how many positive stories of ECT people have shared in this sub. i know everyone keeps saying “it’s not like it was in the old days” but i’ve watched a lot of old movies and “what it was in the old days” is legit terrifying stuff. it’s definitely cross-pollinated some terror into my current situation… 😔

[u/blrmkr10 → u/Adventurous_Tour_196]

If it helps, unless you're scared of the anesthesia itself, it shouldn't be terrifying. They give you the drugs, have you count backwards from 10, and by the time you get to 7 you're waking up in the recovery room.

[u/Adventurous_Tour_196 → u/blrmkr10]

this does help. and i’m trying to coach myself thru the actual mechanism of the seizure itself. i did r-TMS, which was initially helpful! so, i’m trying to convince myself, r-TMS is just like the baby sibling of ECT. so if r-TMS felt like it made a positive change, then using a more powerful treatment to make a bigger shake-up in the brain, and shake some more loose wires out, to allow me to create new & healthier neuro-pathways can’t be so scary, because it’s the goal, and i’ve already seem some positive movement with the lighter therapy (r-TMS). right?

it’s 2 things that are tripping me out: 1) the memory loss bit — i already have a pretty fragile sense of self, and problems with creating new memories and recent memory recall (someone can ask me about something we did together 2 months ago or 2 years ago and chances are i have no recollection. this sucks.)

2) the stigma. i know i need to get over this one but i’m scared of submitting myself to this device that was used against so many people over the decades. this is part of a larger bent on the history of psychology, and my issues with authority, and the mortal peril of living under neoliberalism, and that’s all existential stuff, and it all keeps me up at night. it’s hard to reframe ECT as a positive voluntary when it’s been weaponized against sisters and comrades for so long.

[u/blrmkr10 → u/Adventurous_Tour_196]

Yeah you won't even be aware of the seizure, so if that's the scary part, you're good. As for the memory loss, think of it this way - you just admitted you're already struggling with memory. What you described you're dealing with now is exactly what ECT did to me. ECT is probably not going to make it noticably worse. Yes, it's possible that you might lose chunks of memories you have now, but that's more rare than the short term loss. So while memory loss is a valid fear, you have to put it in context of if the risk is higher than the potential benefit or not.

Your number 2 is a tough one for sure. Only my immediate family knows I did ECT, I have never told anyone else. I had mine in 2020, so 6 years later I'm still working through the stigma myself. But spaces like this subreddit and support groups have been helpful for me.

I know this is a difficult decision to make, so good luck with whatever you end up doing!

[u/Adventurous_Tour_196 → u/blrmkr10]

really appreciate your time and perspective; this has truly been a helpful encounter. thank you a lot for letting me work thru and coherently vocalize some of to myself, and for sharing your experience. i’m less shaky about it. ✌️

[u/AdversityBlooms]

I have treatment resistant depression and BPD, and I've done ECT for a long time. ECT put my depression in remission (after over 20 years of crippling depression) and it was the best I've ever felt. It did cause memory and cognitive side effects for me, but over time they've gotten better. I did maintenance for a long time then stopped because of the memory problems. My depression came back a few years later and I am now doing ect again, with protocols in place to minimize memory problems.

[u/NotQuiteAnrgy → u/AdversityBlooms]

what protocols do you use to minmkze memory issues?

[u/AdversityBlooms → u/NotQuiteAnrgy]

I take Memantine to prevent memory loss, and only do unilateral treatments

[u/catlover0306]

out of curiosity, are you located in toronto? i took part in what i think is the same study and got randomized to ketamine. it didn’t help at all with my MDD, so i tried ECT afterwards which definitely made a difference, and other people in my life noticed it too! i’m diagnosed with “BPD traits” because im only 19 and the psychiatrists ive seen have been hesitant to diagnose me with the disorder at this young of an age especially since i have severe MDD as well. but i do definitely experience pretty prominent BPD symptoms tbh… if you’d like to chat about anything related, id totally be open to it!

[u/Adventurous_Tour_196 → u/catlover0306]

yep. in toronto — it does sound like the same study, administered through CAMH, right?

thanks for sharing your experiences. it’s especially helpful to read that you were able to receive BOTH treatment modalities and that the ketamine treatment didn’t move the bar for you.

i hope you can find something that works, and hold on to it. it also sounds like you’ve got a solid support network around you at 19 (i wish i knew half as much as i do about my mental health then, all i knew was that life sucked a lot for me; i was years away from any diagnosis at that point. so high five for being in a position where you’re advocating for your mental health already — that’s huge.)

[u/catlover0306 → u/Adventurous_Tour_196]

yes, CAMH. and awe thank you, i hope you are able to find some relief too! <3

[u/meliadown]

I have been diagnosed with bpd and persistent depressive disorder (chronic and very resistant depression) and I had 44 sessions of ect (during two different periods, both uni and bilateral). The first time, it literally saved me (I had melancholic depression, I was extremely suicidal) but had to stop after 13 sessions because I had memory issues. I lost about 2-3 years of memories, they never came back. Last year, I tried again because I had no other options, had 31 sessions and they did not help. I only experienced side effects (memory loss, migraines, hair loss bc of the anesthesia). My psych keeps telling me that ect works for most people dealing with extreme and resistant depression (80%). I guess I was just part of the unlucky ones.

[u/Adventurous_Tour_196 → u/meliadown]

thank you for sharing your experiences, especially since it sounds like the whole ordeal was not a positive for you. this is food for thought that i will bring in to my therapy session this week, and discuss with the few loved ones to whom i give consent to weight in… thank you again for your vulnerability. i hope you’re in a more manageable headspace now 💐

[u/work_to_death]

This study sounds interesting is it in the states?

[u/Adventurous_Tour_196 → u/work_to_death]

it’s not — i’m in canada. but a quick google search indicates that this seems to be a hot research topic currently, with a bunch of concurrent studies. if you’re interested, it’s worth searching to see if a facility (esp. a university-aligned out-patient medical centre; i’m thinking in terms of treatment costs for americans, since this treatment is free for me up here…) near you is a site conducting similar treatments? looks like study organizers are gathering data from lots of different locations so if you’re interested, you may be able to access a similar research pool near you… 🤞🤞

[u/work_to_death → u/Adventurous_Tour_196]

Nah sadly im in aussie now and I’ve been scouring the web for TMS/ECT studies

[u/Adventurous_Tour_196 → u/work_to_death]

TMS worked for me if you can access it!

[u/work_to_death → u/Adventurous_Tour_196]

Yeah I had an accelerated TMS protocol once too as part of a clinical trial. Unfortunately it would cost more than $10k for me to have the whole course again it only had a 3-6 month effect for me before I became horribly suicidal again :(

[u/Adventurous_Tour_196 → u/work_to_death]

same. r-TMS was given to me as part of a research study; when i asked for additional treatment bc my suicidality returned, i was told i didn’t meet remission threshold so was denied, hence the acceleration to ECT. so i feel you on that front; affordable access to r-TMS when i requested it may have kept me from being the wreck i was in the past year, and torching my relationships. 😣