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Rambler76

Why has ECT traumatised me?

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Hi,

I’m a long time lurker going back to the Jerod Poore days and I’m trying to get to the bottom of why my now three ECT courses have traumatised me to the point that I have PTSD about what I have been through. 

In terms of my mental health issues I have had treatment resistant depression for the majority of my adult life (over twenty years) that has failed to respond to most antidepressants. 

Antidepressants have largely kept my head above water but I’ve been drowning on a daily basis and life is a real struggle. 

In addition to my depression I’ve been dealt and extra blow of having anxiety and panic disorder. In terms of anxiety it’s not just GAD but an obsessing / ruminating anxiety that is really punishing. 

I had my first voluntary inpatient hospitalisation in 2011 where I had twelve unilateral ECT treatments and then had a second hospitalisation in 2013 where I had ten of the same treatments. 

Although I don’t remember a lot about the 2011 hospitalisation because I was in such a bad way I was told it helped me and my depression.

The 2013 hospitalisation was different however. 

During this hospitalisation I was extremely apprehensive about having ECT and although I don’t remember it, from journal entries I was panic stricken in the procedure room and was told that I had to be given oxygen to calm down. I was also told that I regularly woke up in recovery crying after ECT.

I also remember that when I woke up in my room after ECT I would spend most of the day crying my eyes out, but was told that this was ‘just a release of emotions’. 

For a number of years following my ECT treatment in 2013 I found myself waking at home around the same time in the early morning (~6am) as staff woke me in hospital to get me ready for ECT feeling panicked and anxious, something I couldn’t explain or workout at the time.

It was only recently in the past year or two that I connected the dots and found that this was some type of PTSD related to ECT. Since coming to this realisation this morning anxiety has stopped.

Presently I’m a voluntary inpatient as my last medication change in December 2018 caused me to go downhill really fast to the point where I had difficulty participating in life and could not go to work. 

I was admitted to hospital just over two weeks ago under the premise of ceasing my current medication and starting Nardil and having ECT. 

I know I know. You’re probably thinking why on earth would I do that.

Although I found it extremely difficult to go back to hospital and even more difficult to comprehend the thought of going through ECT again, I have a wife and young family that have missed out on a husband and father for the past number of years so I was willing to put myself through this for them.  

To date I have had four ECT treatments and as I progressed through these treatments I found myself becoming more and more anxious, panicked and agitated to the point of where I felt like I was going to jump out of my skin. Extreme panic and distress had set in.

I was due to have my fifth ECT on Monday this week but I became so anxious and agitated on Sunday night that I was physically ill and was contemplating discharging myself from hospital because I was so traumatised by being here.

Rather than doing this I advised the nurses that I could not go through with ECT and the treatments were stopped.  

I found that since having ECT I have been having bursts of intense panic and fear that I cannot correlate. 

I am still quite panicked, agitated and traumatised even though I know the ECT treatments have been cancelled and that I’m now proceeding with Nardil which I started today at an initial dose of 30mg.

The thought of ECT makes me want to throw up, and being here as an inpatient is one of the hardest things that I’ve had to do.

Im finding it difficult to both go to sleep and wake up now even though I have stopped ECT. I feel scared, anxious and panicked and have a real fight/flight feeling going on which is making it difficult to cope and stay in hospital.

I was wondering if anyone could help me connect the dots as to why I have been traumatised by ECT. 

Thank you

Edited by Rambler76
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I can only speak for myself but ECT has always saved my life. 

I started having it in 1995 and periodically over the years I have had it many times, my last being 2016, I had 32 treatments that time. 

I ended up having 32 which is extremely unusual. I was admitted and spent 7 months in hospital. 

The first course didn’t work, I knew there was something not right. My jaw didn’t hurt and I didn’t has the headache. It was my intention to bide my time until my discharge and then book a hotel and end my life, ECT had always been my saviour and if that wasn’t going to work then I had nothing left in me to carry on. 

During my time in hospital I met a young patient who’s mother was a psychiatric nurse in the hospital I was in in 1995. She mentioned to her mother that I was there and told her mother that ECT wasn’t working and I was in a bad way. 

Obviously her mother wasn’t allowed to speak to me and as she was no longer working as a nurse but spoke to me through her daughter. 

She told me to get the doctor to go back through my notes of many years and try to identify something that was different back then. The doctors thought I had lost the plot and only carried out my wishes to humour me. 

The anaesthetic was different to the one I had been having for many years. 

Like you I was waking very agitated and felt a sense of panic, however, once the Chang was identified the anaesthetic was changed back to the original one they used many years earlier and I have never looked back since, I’ve been well since my last admission and I know if I get really sick again I can resume treatment, like you I do not respond to antidepressants so this is always my saviour. 

Speak to your doctors, ask them to change the anaesthetic to the old one used in the 90’s, it could be the anaesthetic they are using today that is making you feel so panicked, you may not get a good reception from your doctor as they don’t like having their treatments of you being questioned, tell them my story if need be, get your family to speak for you, if you are sectioned no one listens, but they have to listen to them. 

It is very normal to be scared, however scared and panicked you feel try to remember, you are still here, your still alive so it must have worked the last time or you wouldn’t be alive now. Try to remember it really is a last resort for the doctors they only use it when nothing else is working, it’s a life or death treatment and will have been discussed at great length with all the medical staff responsible for your care. 

Imagine you were walking on a tightrope above the Grand Canyon and your family are on the other side trapped and only you can save them, walk that tightrope however terrified you are, no one ever does of a panic attack however much we think we will when happen to us but many die because of depression. 

You are in a black hole now, there is a light at the top where your family are waiting for you, there is a ladder in there with you too but you can’t find it, it’s there I promise you, search for it with everything you have, your children are there and their lives depend on you getting to them, you HAVE to make it and you will because if you end your life and get engulfed in the black hole you may as well take them with you, their lives will be damaged beyond repair they will enter their own black hole. 

I knew a girl at school who’s father let the hole take control, he doused himself in petrol and set it alight, she never got over his death, I met her many years later during a stay in the hospital where I was, I know what it did to her, the guilt she felt because she couldn’t save him, the anger she felt because he couldn’t have loved her enough to stay, the pain she felt over something that she had no part in because it was never her pain, it was his. 

I attended her funeral in 2013, her children were there ages 6 and 9 years old, what’s in store for them who knows. 

Depression is a crippling thing but sometimes we are locked in our own hell that we forget about our loved ones, we are so wrapped up in how we feel we can’t think about others around us, we sometimes think in order for them to live it will be better for them if we die, it won’t. 

Start the treatment again, stay on the ward as I did until the team are ready for you, hold their hand while the anaesthetic takes affect, I used to panic badly just before I slipped into unconsciousness, breathe in the oxygen you will be given before you sleep, picture your family as you breathe it and drift off to sleep. 

You deserve a second chance and you children deserve the life you planned for them before you got sick. 

I would have been dead when my baby was 9 months old, he’s 25 now. He sometimes thinks it’s his fault I got sick after his birth but I am HERE to reassure him it’s not. 

I have been sick and hospitalised many times since and Im sure I may be again at some time in the future. 

My son says he often wonders if Coldplay wrote wrote Fix You with  all the children and families that are affected by their parents/loved ones depression. 

Listen to it and imagine you children. 

I wish you well in your recovery. 

Kym xx

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14 minutes ago, kymmie said:

Speak to your doctors, ask them to change the anaesthetic to the old one used in the 90’s, it could be the anaesthetic they are using today that is making you feel so panicked,

I spoke with the anaesthetist prior to starting ECT and told him that when I had my 2013 treatments I was waking in recovery panicked and freaking out and that they said at the time that they would add something to the anaesthetic to try and stop this. I asked them to make a note on my file and to add this / do the same this time around which they said they would. 

I don’t know if they did because I was still affected by the panic and agitation. 

41 minutes ago, kymmie said:

Start the treatment again, stay on the ward as I did 

This third course of ECT just about broke me as a person, and if I didn’t cancel the treatments I would have been in a far worse position than I am in now. 

I’ve stayed as an inpatient and have restarted 5mg of Diazepam twice a day now that I’ve stopped ECT and have started Nardil which I have really high hopes for. 

I guess if Nardil doesn’t work down the track and I find myself as an inpatient again then there will need to be a planned approach to my ECT treatments next time including detailed input from the anaesthetist about how to best manage my panic and agitation, and not just a 2-3 minute pre procedure consult. Also my pdoc will have to work harder on how to deal with my anxiety as charting up to 10mg of Zyprexa daily in divided doses hasn’t been cutting it over the past few weeks. 

49 minutes ago, kymmie said:

My son says he often wonders if Coldplay wrote wrote Fix You with  all the children and families that are affected by their parents/loved ones depression. 

 Listen to it and imagine you children. 

Listening to this song and reading the lyrics really hit me hard. 

It made me realise that my wife has tried to fix me for over twenty years and now my kids are trying to comfort me and fix me as well. They’re 8 and 12 and are way too young for this. 

52 minutes ago, kymmie said:

I wish you well in your recovery

I don’t know if it’s the Diazepam building up in my system or the placebo effect of one days 30mg dose of Nardil but I feel like I’m on my way. 

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5 hours ago, Rambler76 said:

I spoke with the anaesthetist prior to starting ECT and told him that when I had my 2013 treatments I was waking in recovery panicked and freaking out and that they said at the time that they would add something to the anaesthetic to try and stop this. I asked them to make a note on my file and to add this / do the same this time around which they said they would. 

I don’t know if they did because I was still affected by the panic and agitation. 

This third course of ECT just about broke me as a person, and if I didn’t cancel the treatments I would have been in a far worse position than I am in now. 

I’ve stayed as an inpatient and have restarted 5mg of Diazepam twice a day now that I’ve stopped ECT and have started Nardil which I have really high hopes for. 

I guess if Nardil doesn’t work down the track and I find myself as an inpatient again then there will need to be a planned approach to my ECT treatments next time including detailed input from the anaesthetist about how to best manage my panic and agitation, and not just a 2-3 minute pre procedure consult. Also my pdoc will have to work harder on how to deal with my anxiety as charting up to 10mg of Zyprexa daily in divided doses hasn’t been cutting it over the past few weeks. 

Listening to this song and reading the lyrics really hit me hard. 

It made me realise that my wife has tried to fix me for over twenty years and now my kids are trying to comfort me and fix me as well. They’re 8 and 12 and are way too young for this. 

I don’t know if it’s the Diazepam building up in my system or the placebo effect of one days 30mg dose of Nardil but I feel like I’m on my way. 

Have you ever tried/looked into ketamine? I had a similar experience. Had to stop ECT cuz of mounting panic so next severe episode did ketamine instead and I liked it better. some are talking about having me start it again but it's just expensive otherwise I'd be getting it like 3 times a month

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5 hours ago, Iceberg said:

Have you ever tried/looked into ketamine? I had a similar experience. Had to stop ECT cuz of mounting panic

Sort of.

Here in Australia Ketamine isn’t really used as a treatment and is only going through a research phase. 

I had to participate in a blind study at a research institute in mid 2017 in order to receive a guaranteed treatment course of Ketamine afterward which from memory was around 3 times a week over the course of a month in exchange for participating in this trial.

Unfortunately it didn’t help. 

I’ve woken up this morning at about 6am (AEST) like most other mornings and I’m finding it extremely uncomfortable because I’m anxious and agitated, and I have a sense of fear and panic. 

I also have a sense of hopelessness where I just feel like crying.

Waiting an hour and a half for my 8am meds seems ages away. 

Edited by Rambler76
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I am so sorry to hear your story. I can completely relate to most of it. We sound similar in many ways. 

I had ECT last June and it caused me severe panic and anxiety as well. 

I also did 4 ketamine treatments in 2017 which did the same thing to me. My last infusion put me into a 2 day panic attack. 

How are you doing on the Nardil? 

I picked up my prescription on Friday, but have just been staring at it terrified  to start it. 

 

 

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3 hours ago, Britton777 said:

I had ECT last June and it caused me severe panic and anxiety as well.

As I mentioned earlier I was never a fan of ECT and was really apprehensive even before I started treatment. 

My pdoc is very pro ECT and the hospital I’m in is an ECT teaching hospital I was told later. 

I was coherced into ECT and was told it would be the only thing that would help with my depression. 

In fact it made everything worse. It made me more depressed from the sense of despair and hopelessness and made me an anxious agitated mess. 

It was only when I stopped the treatments and started Nardil that I started to feel better. 

Being on Nardil and feeling stable I feel like I’m ready to be discharged and get out of here. 

Its given me a new lease on life and I just want to put this all behind me and move on with life. 

 

Edited by Rambler76
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I had 10 sessions, bilateral, and it screwed me up. I hated being knocked out and it gave me SEVERE PTSD - I couldn't go into a hospital or go near a doctor's bed or those damned paddles AT ALL.

But, there was a reason.

They got the meds wrong. I ended up paralysed but awake (!) unable to breathe, blink or else signal that I was in distress. Cure a LOT of extensive EMDR therapy.

However, I must concede that ECT did save my life.

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3 hours ago, Simba Cub said:

I hated being knocked out and it gave me SEVERE PTSD - I couldn't go into a hospital or go near a doctor's bed or those damned paddles AT ALL.

Same here. I don’t know why I have such an aversion to being anaesthetised but it’s really messed me up. 

Since my previous treatment in 2013 up until now hospitals really freaked me out. 

Going to a dermatologist for a minor procedure a year ago caused a full blown panic attack and I was beside myself. Somehow I made it through the procedure but I can’t image how I’d go through anything similar in the future. 

3 hours ago, Simba Cub said:

They got the meds wrong. I ended up paralysed but awake (!) unable to breathe, blink or else signal that I was in distress. Cure a LOT of extensive EMDR therapy.

I’m really sorry to hear that this happened to you. 

ECT is traumatic enough and I couldn’t image going through it awake .

Edited by Rambler76

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I thought I’d mention that I was discharged from hospital on Friday (8 February) and I’ve been home on Saturday and Sunday (today). 

What I’ve noticed is that I’m still having these bursts of anxiety and fear out of the blue. 

Although they seem to less intensive than they were in hospital and I seem to be less panicked, the feeling is still quite uncomfortable and intrusive. 

I’m trying to work it whether this is PTSD associated with ECT or whether it’s anxiety that’s hanging around until Nardil kicks in. 

Ive been on Nardil now coming up to two weeks starting on 30mg and coming up to a week on 45mg. Plus 5mg of Valium in the evenings. 

Many ideas or suggestions?

Thank you. 

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2 hours ago, Iceberg said:

Does the Nardil seem to be holding now that you are out of the hospital setting? 

It seems to be.  

My depression improved when I went from 30mg to 45mg while I was an inpatient and that seems to be the same now that I’m at home. 

I know it’s only been 10 days since I’ve been on Nardil and 6 days on 45mg but I still feel a bit anxious and agitated. 

Edited by Rambler76

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Can't help but follow your story. I was close to trying ECT in the past but was too afraid of the same thing happening to me. I am already phobic of hospitals and intrusive medical procedures in general, don't know how people go through this. With PTSD, I've heard that if meds do not help, EDMR has helped people I know with PTSD. I hope things get better. 

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56 minutes ago, Blahblah said:

I am already phobic of hospitals and intrusive medical procedures in general, don't know how people go through this. 

I think you get to a point where your depression is so bad and you’re at such a low point in your life that you’re willing to try anything to get better. 

I swore that I’d never go through ECT again since my last treatment in 2013 but since I deteriorated so badly I thought what do I have have to lose?

i don’t know what happened but I thought I would be strong enough to go through it and get better but it basically broke me after four treatments and really affected me in terms of PTSD and anxiety/agitation/panic. 

Although I’m out of hospital and I’m trying to put that whole experience behind me I’m still very affected by the whole ordeal and Im still very anxious, uneasy and unsettled. 

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I do sometimes wonder if I'd ever do more ECT. I currently undergo rTMS, MAOI antidepressant therapy and augmenting drugs such as Epilim and antipsychotics, which should be bomb proof, but I have to admit, for all its faults, nothing beats depression like ECT.

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On 2/19/2019 at 11:56 AM, Simba Cub said:

I currently undergo rTMS, MAOI antidepressant therapy and augmenting drugs such as Epilim and antipsychotics, which should be bomb

I’d been keen to try TMS but here in Aus it isn’t covered by the government or health insurance and costs about AUD$300 per treatment and a course of 20 treatments is recommended which I can’t afford. 

I’m in the process of MAOI treatment and I’m expecting my Nardil to be increased from 45mg currently to 60mg or 75mg. 

Depending on what my new pdoc will want to do  there will definitely be some sort of augmentation which may be Ritalin and I’ll definitely be refusing any antipsychotics as the many I’ve tried have done nothing but add to my problems. 

On 2/19/2019 at 11:56 AM, Simba Cub said:

but I have to admit, for all its faults, nothing beats depression like ECT.

I’ve think for the majority of severely depressed patients it does, but in my case it didn’t help me in 2011, 2013 and 2019 and caused me psychological issues that now need therapy to resolve. 

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18 hours ago, Rambler76 said:

I’ve think for the majority of severely depressed patients it does, but in my case it didn’t help me in 2011, 2013 and 2019 and caused me psychological issues that now need therapy to resolve. 

Oh, I'm sure it's not the be all and end all remedy. I still question whether or not it was all worth it. I was less depressed, this is true, but the whole experience was so traumatising I couldn't go in hospitals, lie on examination tables, doctors chair or go near the Polyclinic where it was all done for months, even after extensive EMDR therapy. It's still horrendous.

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