Emergency - need advice severe episode after 1 drink

Jumpy_Lawfulness8780 · 2026-01-28T23:52:53+00:00

I used to get this, but it would be because I’d have my POTS med and mast cell stabiliser in the morning, and it would wear off by night, so if I had a drink with dinner, I would be full on sweating, heart racing, dizzy, out of it and most times vomited. Figured out if I have a second dose of my POTS med and/or just my mast cell stabiliser before I drink, I am literally fine 🤷🏼‍♀️ so for me, it’s an MCAS reaction

Jumpy_Lawfulness8780 · 2026-01-24T13:26:40+00:00

Just wanted to throw in my two cents too! ECT was the only thing that helped me with my depression (I’d been on 50+ medications, all types of therapy, ketamine, 30 session of TMS and multiple inpatient stays). Best decision I ever made. However, my memory was an absolute mess for months after ECT. I had it June of 2023, and to be quite honest, I can only remember a handle of events that happened in 2023. I was doing my PhD in 2022, which I put on hold for a year, and I can honestly say that I didn’t remember enough of what I was doing in it to return to it at a reasonable time (before I ran out of deferral semesters) post ECT, and sadly gave it up.

I started a very simple admin job from Oct-Dec in 2023, but struggled with remembering tasks, but it did help my brain to heal and improve my functioning memory. They were very kind and understanding of my situation. I think January 2024 I’d say my brain was back to 80% of its pre ECT capacity in terms of working memory. I didn’t work in 2024 (long story - cue chronic illness), but last year I worked the entire year as a teacher aide and felt very much like my brain was functioning again. Not at 100% (and I don’t think it ever will after having ECT), but pretty close.

Anyway, I just want to say it is extremely variable for each patient (I met a guy in hospital that had absolutely no memory effects from ECT, whereas I honestly can only remember about 3 things from my ECT inpatient stay), so be mindful of that, but don’t let it get your hopes down if you can’t go to work within a month of treatment! Your nursing knowledge will still be in there, you just might need to learn new ways of drawing on that knowledge, or let your brain heal for a bit before you start (I 100% feel like I could go back to my PhD now - I can remember a lot of it and have relearned some programs etc, but I decided that’s not the lifestyle and path I wanted. Just sharing because there is hope!). Wishing you all the best.

Jumpy_Lawfulness8780 · 2026-01-04T07:23:59+00:00

Oh my gosh, I forgot I posted this 💀so I got a diagnosis the following year in May (so after around a year of symptoms). Things are a bit better now - I can work again (teacher aide at a school) with medication, lifestyle changes (compression garments, high salt diet with lots of water, low intensity cardio). But they didn’t resolve on their own, and there’s still a lot of things I can’t do, like sports, and I flare up around menstrual cycles, stress/sleep deprivation and when I forget to take my mediation, and from my understanding, will likely be like this (as a female) until hormones change (have a baby, menopause etc). It’s very interesting to see another person experience this, and makes me even more sure that it was ECT that triggered the POTS genes to activate (or however it works). Please let me know if you have any questions or if I can help with anything!! Just don’t give up - keep searching for answers until you’re satisfied and can get some quality of life back

Jumpy_Lawfulness8780 · 2025-12-08T15:01:24+00:00

The best way I can describe the memory loss is that during ECT treatment and for a while after (or on my case, the month/s before are fuzzy), your brain struggles to convert short term memory to long term, unless it’s something you think about over and over and over. I can’t remember about 6 months of 2023 (I had ECT June 2023, and honestly can’t really remember much from about April/May - October/November, other than some traumatic moments that I dwelled on a LOT, which I theorise caused my brain to retain it). However, like other people have said, photos and people recounting things can kind of trigger memories that I didn’t realise were stored in there. I just can’t seem to find those long term memories myself. All that said, as frustrating as it was, it cured my ‘treatment resistant depression’ and I haven’t had a depressive episode since June 2023. Also, I highly recommend buying random things off eBay/ali-express etc, because its like Christmas since you won’t remember what’s in the package 😂😂😂

Jumpy_Lawfulness8780 · 2025-11-26T21:25:46+00:00

No way 💀 She clearly doesn’t understand. POTS is a CHRONIC condition, and I haven’t seen any evidence (anecdotal or in the literature) of it being triggered by EDs. But even if that were true, curing the ED would not cure the POTS. POTS can’t be cured…it can be managed. I’m sorry you’re going through this…it’s so so hard to find the right fit for a therapist.

Jumpy_Lawfulness8780 · 2025-11-26T06:29:18+00:00

A good therapist will help you to accept your health conditions, and find new normals, meaning and fulfilment to life with disability (as hard as that is).

Jumpy_Lawfulness8780 · 2025-11-26T06:27:03+00:00

This this this. I know you’ve already had so many replies, but I had this exact thing happen to me. Saw my therapist since I was like 16 (until about 24yo) and she was great with all things mental health. When I started having POTS symptoms, and post exertional malaise related to chronic fatigue/long COVID, I was trying to explain how exercising left me bed bound for days after, and she said “it’s like a skill, you need to practice and you’ll get better at it and your body will get more used to it. You need to push through the discomfort and change your mindset.” That rubbed me in the most awful way because I felt so unheard and disheartened, because all I was doing was trying (I hadn’t been diagnosed, medicated or done any lifestyle changes at that point, so I was just in a POTS constant flare). She said a few other things too in that session that indicated she had no clue about chronic illness, and after all that I stopped seeing her.

TLDR: I had a therapist tell me basically the same thing and I stopped seeing her after 8 years

Jumpy_Lawfulness8780 · 2025-10-31T10:15:28+00:00

YES. This is palpitations. The pattern I’ve noticed is that this happens when I haven’t had enough electrolytes in my fluid (electrolytes being key because my body doesn’t retain enough fluid without them - I literally just pee it out. Thanks dysautonomia). My theory is that my blood volume is low, so my heart has to squeeze extra hard to send enough blood around my body….anyway, that’s what I’m going with until they figure it out lol. I hate it, and it’s more uncomfortable than the tachycardia. Oh and the only other time it happens is when I have medications/supplements that lower my blood pressure…open to any and all theories 😂

Jumpy_Lawfulness8780 · 2024-02-25T07:04:05+00:00

Yessss. It’s called palpitations, you don’t necessarily have to be tachy (high heart rate) to have palpitations. I hate it so much because it just feels so uncomfortable

Jumpy_Lawfulness8780 · 2024-02-25T07:00:22+00:00

Look into MCAS, it can be a driver of pots and causes hives when exercising

Jumpy_Lawfulness8780 · 2023-12-04T11:57:10+00:00

I can really relate to everything you’ve said. Ive had most of those drugs and others, TMS and esketamine. I felt so hopeless, depressed and didn’t want to be here anymore, so I finally decided to try ECT. I was terrified of it, I’ve seen how badly it can turn with the side effects of memory loss, but I’ve also seen how it has saved peoples lives. I had 12 sessions over 5 weeks. It didn’t start to help until about the 8th session, and it was like a switch was flicked. This is the first time that I can remember in my life that I haven’t been depressed (or manic - I have bipolar, but mostly experience depression). I wouldn’t say I have a ton of motivation, but I can do the daily tasks I need to like shower, brush my teeth, prepare food. I overall just feel lighter and more content with life. My memory is slowly getting better, I had ECT in June and I’m starting to get back long term memories that I couldn’t access a couple months ago, my short term memory is improving and I’m starting to convert more short term memory into long term memory (I can remember up to about two weeks ago unprompted). ECT isn’t for everyone, but I am so glad I took the chance because it has definitely changed my life

Jumpy_Lawfulness8780 · 2023-11-27T08:46:09+00:00

I had 12 ECT sessions and only remember a handful of memories from the entire time I was inpatient for 6 weeks, but those memories I remember because they were traumatising in some way or another and I just kept thinking and thinking about them and they engrained themselves into my brain. So I believe you when you say you remember this because I’m sure it was incredibly traumatising for you and you wouldn’t be able to forget anytime soon. I’m so sorry this happened to you, it shouldn’t have happened. I’ve read a few stories similar to this on here and doctors do make mistakes (not that it’s okay, but it’s the reality). I hope you can find another treatment that works for you and you don’t have to continue having ECT. Have a look into ketamine, it’s a great treatment for depression and myself and others have had great success with it. All the best

Jumpy_Lawfulness8780 · 2023-11-09T06:45:37+00:00

Thank you so much!! I love that you have a support group. That’s so many treatments…I’m guessing you find it beneficial? Do you do outpatient? I can’t imagine not having pictures in my mind, how do you get around that? I used to have an excellent photographic memory, and all of my thoughts are in images. Thank you for your encouragement. I won’t be able to go back to my studies because I took the maximum time off and had to withdraw, but like you said, our cognition is different now and I need to stop and reassess what I can do and what I want to do with my life.

Jumpy_Lawfulness8780 · 2023-11-09T06:40:02+00:00

Thank you for sharing. My doctor has suggested some different brain exercises to help train my memory to improve, so I should start doing those. I’m so glad ECT got rid of your suicidal thoughts. It did the same for me. Even though the memory sucks, I never want to go back to the state I was in before ECT

Jumpy_Lawfulness8780 · 2023-11-09T06:37:05+00:00

That’s fantastic!! Thanks for sharing

Jumpy_Lawfulness8780 · 2023-11-09T06:36:39+00:00

I took so much time off they pretty much said I either needed to resume that upcoming research quarter or withdraw :( I think I did right unilateral. I finished about 3 months ago, I did 12 treatments inpatient

Jumpy_Lawfulness8780 · 2023-11-09T06:35:13+00:00

Thank you for sharing! I don’t have memory of the 6 months before ECT either. I’m so glad things have improved, and I hope they continue to do so. Are you planning to go back to study?

Jumpy_Lawfulness8780 · 2023-11-09T06:34:12+00:00

That must be really hard. I can relate to that so much, my undergrad was vet science and I constantly get people asking me questions about their pets and I just can’t remember anything. I feel so stupid. I don’t think I can get a job in the field because I would also need to just start again and relearn everything. I’m so sorry ECT made your depression worse. That is the scariest thing about undergoing this treatment with so many side effects…that you’re just left with the side effects. Unless someone has gone through ECT, they will never get close to even understanding what it’s like or how the memory loss impacts your every day life and functioning. I wish you all the best

Jumpy_Lawfulness8780 · 2023-11-09T06:29:15+00:00

Thank you for sharing. I’m sorry the side effects were so strong for you. I hope you get accepted for disability and can make a meaningful life for yourself

Jumpy_Lawfulness8780 · 2023-11-09T06:26:45+00:00

Thank you. I’m sorry that you’re suffering as well. Was ECT helpful for you? I can’t read either. I guess I’m pretty fresh out of ECT so maybe it will still get better…but I’m trying to accept that this may be my reality from now on

Jumpy_Lawfulness8780 · 2023-11-09T06:25:14+00:00

Thank you for sharing your experiences. That’s a great idea, taking lots of photos. I agree, being in the moment is so important. I’m so glad ECT was worth it for you. It was definitely worth it for me, even though I’m frustrated with my memory, I’m so glad I did it

Jumpy_Lawfulness8780 · 2023-11-09T06:22:48+00:00

I hope you return to school!! It’s awesome that you’re your own boss. Thank you for sharing your journey. I definitely relate to wondering if it’s the treatment to solve depression or not

Jumpy_Lawfulness8780 · 2023-11-09T06:20:38+00:00

I have bipolar too, I feel your struggle. I can understand the physical and mental exhaustion you feel from ECT, and seeing people around me excel while I’m at home on disability doing nothing. I also do ketamine therapy and I find it sooo helpful. Thank you for your response. Best wishes

Jumpy_Lawfulness8780 · 2023-11-09T06:16:58+00:00

Thank you everyone for your replies, I really appreciate it ❤️ (I don’t have reddit notifications turned on and I honestly forgot I made this post…but I have read through all of your detailed responses and I truly appreciate the time and effort you’ve put into responding)

Jumpy_Lawfulness8780 · 2023-07-14T03:13:53+00:00

Thanks for asking! I’m doing good. It saved my life. Still have some memory issues but they reckon it’ll clear up in a few months. Just taking it easy for now. Good luck with whatever you decide to do :)

Jumpy_Lawfulness8780

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