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lifequake

ECT

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On 11/21/2017 at 11:11 AM, malachite said:

Lifequake,

I have been away from the boards for awhile, but just read your posts. I am profoundly sad and sorry to hear the negative effects ECT had on you. I don't know the details of the deleterious effect it had on you. My experiences with ECT were not good. I wanted to offer you one glimmer of hope though, and feel free to disregard if it's not applicable to your experience.  I had some cognitive impairment post-ECT. Difficulty finding the correct words to express a point and difficulty spelling. Both these things previously came very easily to me so it was extremely frustrating and absolutely devastating.  After about six months, however, these issues resolved. I very much hope this will be the case for you.

I just saw this kind reply, mal.  It really, truly ruined my life to a degree nobody will ever comprehend.

I am fighting placement in a long term care facility and realizing hopelessly that I will never get adequate rehabilitation for brain injury because psychiatrists refuse to admit that ECT can cause diffuse brain damage and cognitive impairment.

Next to zero of my entire life of memory has returned, and I cannot access memories at will, without an external cue.  All things related to executive functioning and the frontal lobe are trashed.  I wet my pants almost daily and drool, cannot recognize faces, cannot read, cannot watch TV, cannot follow conversations, cannot learn or retain information, loss most of my sense of taste, have balance/muscle-coordination impairment, physical symptoms I can't begin to list, severe neurobehavioral and emotional deficits (impulse control, egocentrism, socially inappropriate behavior, violence/aggression, etc).  I am apathetic and emotionally fried to a point of zombie-ness.  Family and professionals tell me that if I had not been intelligent before this, I would be a complete and total vegetable.

I am glad ECT is life-saving for many.  It took mine away.

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Lifequake,

 

I cannot begin to understand the utter devastation ECT has had on your brain, body, and life. I am so deeply sorry, I have no words to even express it.

 

After my horrible experience with ECT, I truly wanted to work on banning it in this country (it is banned in many others.) So many folks told me of how much it helped them though that I thought my experience was just a huge anomaly. I have PTSD due to having it.

I do not believe that the medical establishment's idea of informed consent is close to adequate. First of all, if you have a patient so depressed they are considering getting their brain shocked repeatedly, you have a patient who is desperate and who likely has cognitive impairment due to severe depression.

 

Secondly, there is never a mention of how often things don't work, or worse, are detrimental to the patient. Only after I had delirium from ECT did my doctor inform us that 12 percent of ECT patients experience this! I was never even told it was a possibility!

Honestly, I have barely faced the memory loss I have. It's hard to remember what you have forgotten,  right? For me, it's long-term stuff, I think. But I also have had trauma and years of depression so I am sure that's what docs would pin it on.

I would like to be of comfort and assistance to you, in any small way I can. You have always been a good friend to me here on cb, and I imagine what you are going through is terrifying, infuriating, and sorrowful. If you would like to message me we could talk about what I might do to be there for you. I would be honored if you did.

 

 

Edited by malachite
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Not to be an ass just my 2 cents...my doc gave pretty good informed Consent warning about the memory loss and other issues, I also had my dad with me (I was a minor) and so he and my mom both thought it was worth it because what else is worth trying...but yeah it's a last resort for a reason....but also super effective so I guess it depends how desperate u are 

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19 hours ago, Iceberg said:

Not to be an ass just my 2 cents...my doc gave pretty good informed Consent warning about the memory loss and other issues, I also had my dad with me (I was a minor) and so he and my mom both thought it was worth it because what else is worth trying...but yeah it's a last resort for a reason....but also super effective so I guess it depends how desperate u are 

Yes, it can be effective for people. Most of the people (though not all) that I know who were helped by ECT had temporary results, however, unless they were willing to do maintenance treatments. It sounds like it really helped you though, and I am happy it did. Depression does make us desperate, and I am thrilled for anyone who gets relief in whatever way works for them. For myself, I wish docs had pushed other med options first (stimulants, which have given me the best remission in over 20 years and which I started a few months ago, or MAOIs.) My doc did mention possible memory side effects, but stressed how rare and temporary they were. He also mentioned nothing of the ECT delirium I had. I wish I had known that was a possibility.  

 

Oh, and I didn't find your response to be asshole-ish! I like having civil discussions and getting lots of perspectives!

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On 11/30/2017 at 4:31 PM, malachite said:

Lifequake,

 

I cannot begin to understand the utter devastation ECT has had on your brain, body, and life. I am so deeply sorry, I have no words to even express it.

 

After my horrible experience with ECT, I truly wanted to work on banning it in this country (it is banned in many others.) So many folks told me of how much it helped them though that I thought my experience was just a huge anomaly. I have PTSD due to having it.

I do not believe that the medical establishment's idea of informed consent is close to adequate. First of all, if you have a patient so depressed they are considering getting their brain shocked repeatedly, you have a patient who is desperate and who likely has cognitive impairment due to severe depression.

 

Secondly, there is never a mention of how often things don't work, or worse, are detrimental to the patient. Only after I had delirium from ECT did my doctor inform us that 12 percent of ECT patients experience this! I was never even told it was a possibility!

Honestly, I have barely faced the memory loss I have. It's hard to remember what you have forgotten,  right? For me, it's long-term stuff, I think. But I also have had trauma and years of depression so I am sure that's what docs would pin it on.

I would like to be of comfort and assistance to you, in any small way I can. You have always been a good friend to me here on cb, and I imagine what you are going through is terrifying, infuriating, and sorrowful. If you would like to message me we could talk about what I might do to be there for you. I would be honored if you did.

 

 

I wish I had seen this sooner, mal, as your words are of great comfort.  And I cannot believe you had delirium, too!!  I realized, only after weeks of delirium, that my nightmarish experience might have a name.  Guess I was correct in my self-diagnosis. 

No idea how I have endured all of this without any professional help or validation, but the severe PTSD and ignorance has made me reticent and mistrustful.

Did you see any psychiatrists or medical professionals after the ECT who understood your experience?  How did you start to pick up the pieces afterward?

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On 12/1/2017 at 3:01 PM, Iceberg said:

Have u tried TMS...I can't say I'm a huge believer but it has much less side effects

Thank you for the suggestion, Ice.

TMS would be traumatizing.  The splitting headaches and burning feeling in my brain make me cry almost daily.

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On 12/9/2017 at 10:52 PM, lifequake said:

I wish I had seen this sooner, mal, as your words are of great comfort.  And I cannot believe you had delirium, too!!  I realized, only after weeks of delirium, that my nightmarish experience might have a name.  Guess I was correct in my self-diagnosis. 

No idea how I have endured all of this without any professional help or validation, but the severe PTSD and ignorance has made me reticent and mistrustful.

Did you see any psychiatrists or medical professionals after the ECT who understood your experience?  How did you start to pick up the pieces afterward?

I am so glad my words brought you comfort. Honestly, I have felt so traumatized by ECT that I haven't spoken much about it with professionals.  I have mentioned it, but not really unpacked my trauma. Not because they wouldn't be open and supportive, but in the way that all trauma works and tries to make us avoid it because it hurts and scares us. I wish I had spoken of it sooner to the right professional,  and I hope you can find someone you trust in order to process and grieve and hopefully not have this trauma stay with you forever. Earlier processing probably means fewer emotional scars later on. 

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I had the initial round (12 treatments? I don't remember) about 10 years ago. I didn't notice any miraculous results short-term (and was never sure if there were any long-term). But I was pretty messed up for awhile before and after that period. I can't say that it messed with my cognition long-term, but I certainly don't remember much from around the time it was done. Strangely I do have specific memories--being in the recovery area pre-op and especially the odd beeping noise the machine made.

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Are you better now? It varies from person to person. I saw results after my 4th treatment, I never responded to any medications so I do maintenance every 5-6 weeks.  From what they say the longer you space out the treatments the better, for the patient that's what happened to me. I hope TMS helps you.

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My advice to those who are thinking of ECT is to get a few different opinions from various doctors/clinics/hospitals that offer it and talk to others as well at support groups who have done it..But remember everyone's experience is different.

It is usually a last resort treatment. I had tried like 20 medications and nothing worked so my doctor talked to me about it and then I went to visit the clinic. I had a meeting with the director of the clinic who explained to me its not 100% guarantee that it will work, the possibility of memory loss, but at that point I was so hopeless I didn't care. He did tell me though that it had 70 % chance of working, (according to studies) which are way better than medications offer, so I went ahead and did it. I was hopeless and hated life so at that point I'd do anything to feel some relief.

They started by unilateral (which means you get the shock by 1 side of the head first)  do 12 treatments spaced out 3 times a week and then depending on the person they continue maintenance treatments  or might try bilateral (which means you get shocked at both sides, and more chance of memory loss)  but I think it all depends on the person, the type of depression they have, etc, and everyone responds different.  I was willing to try it, regardless of how others speak badly about it, because I have very severe depression and I couldn't deal with it anymore. Luckily, it helped so I'm grateful for that. Now I'm trying to work on getting my OCD and anxiety under control.

I do not know too much about TMS. When it first came out I think insurance wouldn't cover it because I had met a lady who told me she spend a lot of money on it and it didn't do anything for her.  I think more insurances cover it now, but I'm not 100% sure. I hope it helps you, its terrible to suffer this way.  Again, it varies with everyone I think. Some people have wrote horror stories about ETC and TMS and others have had their lives saved by them. Not sure if you tried MAOI's ? You probably have because they are usually given as well before you decide about ECT.

I hope you can find a therapist who specializes in trauma/PTSD that the ECT caused you and can help you maybe consider TMS......I really hope you feel better soon.

 

 

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7 hours ago, ilovemusic123 said:

My advice to those who are thinking of ECT is to get a few different opinions from various doctors/clinics/hospitals that offer it and talk to others as well at support groups who have done it..But remember everyone's experience is different.

It is usually a last resort treatment. I had tried like 20 medications and nothing worked so my doctor talked to me about it and then I went to visit the clinic. I had a meeting with the director of the clinic who explained to me its not 100% guarantee that it will work, the possibility of memory loss, but at that point I was so hopeless I didn't care. He did tell me though that it had 70 % chance of working, (according to studies) which are way better than medications offer, so I went ahead and did it. I was hopeless and hated life so at that point I'd do anything to feel some relief.

They started by unilateral (which means you get the shock by 1 side of the head first)  do 12 treatments spaced out 3 times a week and then depending on the person they continue maintenance treatments  or might try bilateral (which means you get shocked at both sides, and more chance of memory loss)  but I think it all depends on the person, the type of depression they have, etc, and everyone responds different.  I was willing to try it, regardless of how others speak badly about it, because I have very severe depression and I couldn't deal with it anymore. Luckily, it helped so I'm grateful for that. Now I'm trying to work on getting my OCD and anxiety under control.

I do not know too much about TMS. When it first came out I think insurance wouldn't cover it because I had met a lady who told me she spend a lot of money on it and it didn't do anything for her.  I think more insurances cover it now, but I'm not 100% sure. I hope it helps you, its terrible to suffer this way.  Again, it varies with everyone I think. Some people have wrote horror stories about ETC and TMS and others have had their lives saved by them. Not sure if you tried MAOI's ? You probably have because they are usually given as well before you decide about ECT.

I hope you can find a therapist who specializes in trauma/PTSD that the ECT caused you and can help you maybe consider TMS......I really hope you feel better soon.

 

 

Thank you for the well-wishes, @ilovemusic123.

I clearly have strong opinions about ECT, even if I am in the minority here. 

No psychiatrist or hospital will warn of severe retrograde memory loss (decades), ongoing anterograde amnesia, processing deficits, aphasia, seizures/epilepsy, heart arrhythmia, apathy, personality change, loss of any or all of the following: education, creativity, intelligence, emotional range, social and communication skills.

I do not know how to move forward.

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11 hours ago, lifequake said:

Thank you for the well-wishes, @ilovemusic123.

I clearly have strong opinions about ECT, even if I am in the minority here. 

No psychiatrist or hospital will warn of severe retrograde memory loss (decades), ongoing anterograde amnesia, processing deficits, aphasia, seizures/epilepsy, heart arrhythmia, apathy, personality change, loss of any or all of the following: education, creativity, intelligence, emotional range, social and communication skills.

I do not know how to move forward.

Honestly, I don't remember it was years ago. They gave me a booklet of things that could occur,  but I took the risk I was so hopeless. Have you looked into ketamine? The treatments are expensive, but some people say they work , and I suppose TMS. Good luck and feel better.

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On 4/30/2018 at 11:48 PM, lifequake said:

Thank you for the well-wishes, @ilovemusic123.

I clearly have strong opinions about ECT, even if I am in the minority here. 

No psychiatrist or hospital will warn of severe retrograde memory loss (decades), ongoing anterograde amnesia, processing deficits, aphasia, seizures/epilepsy, heart arrhythmia, apathy, personality change, loss of any or all of the following: education, creativity, intelligence, emotional range, social and communication skills.

I do not know how to move forward.

I had a remarkably miraculous experience the first time, years ago. Just a few weeks ago however, I’ve suffered many of the things you describe here. I’m fucking angry as hell. I’d like to shoot the doc that did it cause he MUST have done a ridiculously higher dose or SOMETHING to make this happen. I’m very proactive in my mental health care typically...only this time wth can I do?? I somehow need to get an appointment with him and ask whether he did bilateral, higher dose, etc. I want blood. I’m so sorry you had such enormous trauma. I couldn’t have understood prior to this. Now I at least partially do. Part of me feels completely hopeless...but a bigger part feels vengeful, somehow. To sue somehow. Anything. Blessings. 

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This must be why my pdoc did what seemed like was everything in her power to keep me from doing ECT... even when I was at my worst, like ready to take all my pills in the house, chase it down with some vodka, and take a dirt nap literally any second...

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I second the above mentioned ketamine ...it's worth looking into. The biggest problem is financial limitations 

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On 8/21/2018 at 7:14 AM, DammitJanet said:

I had a remarkably miraculous experience the first time, years ago. Just a few weeks ago however, I’ve suffered many of the things you describe here. I’m fucking angry as hell. I’d like to shoot the doc that did it cause he MUST have done a ridiculously higher dose or SOMETHING to make this happen. I’m very proactive in my mental health care typically...only this time wth can I do?? I somehow need to get an appointment with him and ask whether he did bilateral, higher dose, etc. I want blood. I’m so sorry you had such enormous trauma. I couldn’t have understood prior to this. Now I at least partially do. Part of me feels completely hopeless...but a bigger part feels vengeful, somehow. To sue somehow. Anything. Blessings. 

@DammitJanet  I am so sorry you had a (partially) similar outcome.  I imagine you are in a state of confusion and disbelief over what has happened to you.

Allow me to validate that your anger is justified and prepare you gently for any invalidation and denial you may encounter from various medical professionals. 

If I were you, I would request all your records, and run like hell from that psychiatrist.  You will likely not get the understanding you seek, nor an apology for any damages incurred.

I do not know the details of your situation, but please PM me if you would like to vent or need any support.  I know of an online support community with tips for coping/brain healing, legal contacts, advocacy, etc.  You are not alone. 

 

 

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4 hours ago, lifequake said:

@DammitJanet  I am so sorry you had a (partially) similar outcome.  I imagine you are in a state of confusion and disbelief over what has happened to you.

Allow me to validate that your anger is justified and prepare you gently for any invalidation and denial you may encounter from various medical professionals. 

If I were you, I would request all your records, and run like hell from that psychiatrist.  You will likely not get the understanding you seek, nor an apology for any damages incurred.

I do not know the details of your situation, but please PM me if you would like to vent or need any support.  I know of an online support community with tips for coping/brain healing, legal contacts, advocacy, etc.  You are not alone. 

 

 

Thank you so much. It’s been too hard to reply all day. Can barely put thoughts together today and my depression has gotten so much worse since ECT. I have no clean clothes or dishes nothing. All I can do is potty and feed dog. Pounding headache won’t go away. Spasms in shoulder severe muscle pain. Feeling so depersonalized.   Neck is also feeling strained everything feels fucking awful. I’ll write more as soon as my head lets me. Wrote more than I thought I would. Thank you 

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15 minutes ago, DammitJanet said:

Thank you so much. It’s been too hard to reply all day. Can barely put thoughts together today and my depression has gotten so much worse since ECT. I have no clean clothes or dishes nothing. All I can do is potty and feed dog. Pounding headache won’t go away. Spasms in shoulder severe muscle pain. Feeling so depersonalized.   Neck is also feeling strained everything feels fucking awful. I’ll write more as soon as my head lets me. Wrote more than I thought I would. Thank you 

Do you need an inpatient stay? Just asking cuz it would at least get you out of the house and have some immediate feedback. Having done it before I know that after failed ECT the med options are a lot tricker and maybe close observation will produce a lightbulb 

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