ECT - Treatment or Torture?

Gabrielle having a peek

Since I have been treated with ECT (Electro-Convulsive Therapy), many people have asked me questions about it. When I have asked them what they imagined it was, I was horrified to discover that most people's imagined version of ECT bore a strong resemblance to execution by electric-chair!  

So here is a peek into what ECT treatment is like, as I have experienced it many times (23 times to be exact) myself.

Firstly, there is a specialised ECT Suite at Penn Psychiatric Hospital. It consists of six rooms:

  • The reception lounge area, with comfortable chairs and magazines
  • The administration office, where the ECT team secretary's desk is located
  • The ECT Senior Sister's office, where you can go to be weighed, etc
  • The ECT room itself, which resembles a very small surgical theatre, with a surgical bed and lots of equipment. 
  • The recovery room, where there are four to six beds (can't quite remember) and where ECT patients stay after their treatment until they wake up from the anaesthesia.
  • The tea/coffee and biscuit room, where the medical staff check that patients can eat and drink - i.e. can swallow - normally after the ECT.

 This is what happens when you are booked for ECT Treatment:

  • You are greeted warmly and asked to fill in a feed-back form to check whether/which after-effects you may have experienced since the last treatment. For me, the only real after-effect has been short-term memory disruption and longer term visual memory disruption - i.e. I KNOW I know somebody but it takes me a long time to remember their features. The great advantage of this short-term and relatively short-lasting memory disruption is that I have had superb value from my DVD collection! I KNOW I have seen the movie before but I can't remember anything about it so I can enjoy it all over again as if it were the first time. The medical staff also check that you have had nothing to eat or drink after midnight the night before because of the anaesthesia.
  • You are called in to the ECT room and asked to lay on the surgical table and the staff help you take off your top and your socks (if any) so that all sorts of little monitoring 'pads' attached to some of the equipment can be placed all over your body. These are like placing plasters on (except they feel a lot less sticky) and their job is to monitor all your major functions during the anaesthesia and the ECT treatment. I used to call that 'being wired for sound' which amused everyone. I used to always wear a track suit for convenience because its zipped up top was easy to remove and the staff used to tell me I should create a special ECT Fashion Line! For me, as I got better and better, there was always a lot of laughter during my ECT preparation.
  • Sometimes, there are observers present (students, junior doctors) and you are asked whether you object to their presence. I certainly never did.
  • One of the ECT nurses cleans your temples and pushes your hair out of the way if necessary. My ECT Treatment was always bi-lateral - i.e. applied to both temples.
  • The Doctor then inserts a cannula (a needle attached to what looks like a small funnel) into the top of your left hand (the hand closest to the equipment) and let me tell you:  these guys are cannula champions! Only once did I ever have a bruise from the cannula and I am an awkward customer with small veins.
  • Two padded panels are pulled up on both sides of the surgical bed to keep you safely in place.
  • An oxygen mask is then placed on your nose and mouth and you are asked to take a few deep breaths. One of my ECT doctors (I knew two different ones) used to tell me that Michael Jackson swore by this which I retorted wasn't much of a recommendation!!
  • The ECT team checks that all is in place as it should be and you are then asked whether you are ready to go to sleep. Once you say 'yes', the doctor inserts the short-term anaesthetic into the cannula and it's off to sleepy land you go.
  • Approximately twenty minutes later (I know that because there was a clock directly in front of the surgical bed and another clock in the recovery room), you wake up in the recovery room with a nurse sitting next to you and watching over you. You are welcomed back into the world.  When you feel ready to get up, the nurse helps you to get dressed again.
  • You are then accompanied into the tea/coffee room. Because I do not drink tea or coffee, the staff always made sure there was a bottle of diet Pepsi waiting for me (how wonderful is that!). You drink and you eat some biscuits in front of a member the ECT team who stays with you until you leave. When they are satisfied that all is well, you are ready to be released. Some ECT patients are then taken back to their hospital ward. For me, my husband used to ring the ECT secretary to ask whether I was ready to be picked up.  When he arrived, we went home.
  • When I got home, I used to feel chilly and sleepy for the rest of the day - the normal after-effetcs of the anaesthesia and my husband was always present for the following twenty-four hours.

And that's it folks! That is truly what you experience when you are treated with ECT. All you know about it is that you went to sleep for a short while.

As you can see, what I have described to you is as far removed from torture as daisies are from poison ivy!

If you want to know more about what happens while the patient is asleep, here is some authoritative information for you.

For me, ECT did something wonderful. It put my 'little chuff-chuff' back on its rails. It's as if my brain's internal cogs started to rotate again. My capacity to read, write and speak increased dramatically after ECT. I could function so much better.

The fact that I also need a medication cocktail to ensure my 'little chuff-chuff' runs along its rails under my control, rather than it behaving like a run-away train, takes nothing away from the benefits I gained from ECT.

The ECT team is THE best example of medical care I have ever encountered. I feel a great deal of affection for all of them.

My psychiatrist and my ECT team always discussed/monitored potential and actual side-effects with me and regularly checked whether I was happy to have and/or continue with my ECT treatment. I NEVER once felt under pressure to go ahead. In fact, I did not have my last (24th) ECT treatment because I did not want it.

I was always treated like a human being who was suffering - never as a mentally retarded number who needed to be expedited as quickly as possible.

I guess ECT is like any other form of treatment: it has evolved a great deal since its inception AND it is highly dependent on the people who administer it.

I don't buy it

Wow. This story sounds like an ECT commercial. Screenplay written by psychiatrists. ECT is a brutal and primitive “treatment” that belongs to horror movies like other psychiatry experiments on people prefrontal lobotomy and their drugs. Psychiatrists gave people ecstasy, then LSD and their new drugs are worse than most street drugs.

You'd be surprised

If ECT  was administered in the same way it was in the middle part of the 20th century, it would be brutal and primitive. However, I can testify that the team who treated Gabrielle were in no way brutal and in no way primitive.

Neither Gabrielle or I are psychiatrists. And she's not trying to sell you anything. Using ECT to treat depression is not taken lightly.

Are you suggesting Gabrielle merely typed this article as a lie?

The more I read your comment, the more I wonder what your position truly is and whether it's based on anything remotely scholarly!

On the morning of her first treatment, I was scared shitless. I was hiding my fear from Gabrielle, because I didn't want to make her feel nervous. She wasn't nervous at all though, to be honest.

If you have read any other parts of this blog, you'd know about her second-hand experience of her father having ECT and the positive changes it made to his behaviour. Had she not seen the difference it could make she'd have been more scared than me, I'm sure.

As far as I know, Gabrielle has two motivations for writing this blog:

  1. as a therapeutic exercise for herself to get racing thoughts out of her head;
  2. to help others in need, by doing so, if possible.

She's not selling ECT, because you can't! Especially not in a civilised country with a nationalised health service! I'm the one that put the Google Adsense stuff on her site and to date, I've probably made about five dollars out of it.

If you have some real data to disprove current mental health treatments, please provide it. Your comments are that

  1. ECT is brutal and primitive;
  2. modern day chemical interventions are worse than LSD as administered in the 1950's.

You've made this judgement at the end of Gabrielle's account of ECT where she expressed gratitude towards her healing team for being so compassionate. At best this demonstrates that you didn't read Gabrielle's story. At worst that you're got some other weird agenda going on.

ect

When I had 28 lots of ect 25 years ago there were no friendly nurses to assist at New Cross Hospital Wolverhampton. When I came round after ect I was always holding a cup of very hot tea with no one to watch over me. No checks were made before, during or after on me. And no one monitors the long term effect its had on me.

Agree

I read through Gabrielle's story on ECT, and I can say as a fact that it sounds almost exactly like my bout of treatments I had a year ago. Especially with the memory part. The only down side to how many I had is that my memory loss is permanent according to the doctors. So any movies I watched before treatments, I could seriously watch all of them again and it would feel like the first time I've watched them.

You don't buy it

When I read your comment I am reminded of why I decided to write about my ECT treatment: to dispel any UNFOUNDED fears. Was your comment driven by your personal experience of ECT treatment, either personally or through a person close to you? Where did you acquire your understanding and evaluation of ECT treatment? I understand that - as any 'normal' human being would - you dislike the idea of ECT. After all, you would have to be a little strange to think of it as an attractive proposition :0).  As my husband wrote, choosing ECT treatment is not a decision that must be taken lightly. Generally speaking, you get offered ECT treatment when EVERYTHING ELSE HAS FAILED. This does not mean, however, that it is either a viable or indeed effective option for everybody. I will simply ask you this: do you consider it barbaric to shock the heart to restart it? If you do not, please consider that in extreme circumstances (such as my own), shocking the brain to reset it may not be the brutal psychiatric endeavour you imagine it to be - please read my blog entry again. I just hope my comment goes some way to lessening your fears. Thank you for your interest. I hope YOU are in excellent health :0)

Gabrielle, your account of

Gabrielle, your account of your ECT treatment was spot on! I am currently getting ECT, and I could have written your blog!

I wonder??

I must ask after reading this section, if this therapy worked so well, why did you need to have it 23 times???? What is that all about? Also what were you being treated for? Mania, or something different.

These are really good questions.

Currently, Gabrielle is in Paris helping her parents move. I think she would be better placed to answer these questions, and I'm sure will be happy to do so when she gets back.

My hubby was right - you ask very good questions :0)

I don't know who you are but your question is an important one. I can only answer it for myself. ECT is not a one-off therapy anymore than any other therapy. As I am writing this, I cannot think of any therapy that is completed in one treatment, but of course I could be wrong :0). ECT is administered as a course of treatment, each course counting twelve sessions. In the UK, the medical limit is for two ECT courses of treatment (i.e. a maximum of 24 sessions.) In the US, maintenance ECT is practised but, at time of writing, it is not practised in the UK. All I am qualified to say about ECT is that, for me, it felt from the very first treatment as if my brain had been 'reset'. My language improved dramatically and my physical coordination improved also. My mind felt clearer. I was not treated with ECT for mania (even if bipolarism is also known as manic depression) but for very poor 'functioning'. I had a very severe break-down and I stopped functioning properly. As I have written before, the best way I can put it is that ECT put 'my little train back on its rails'. It is only after receiving ECT treatment that I responded well to drugs. Previously, I had got to ECT after having tried sixteen different medications with only one result: I kept getting worse. Receiving ECT was the beginning of a long road to recovery. I am still travelling on that road. Thank you for your interest - I hope YOU are in excellent health :0)

ect treatment

Hello! I'm a 51 year old uk male with treatment resistant anxiety & depression, since I was 12 years old I'm not takeing any meds because they don't work! Would you recermend sorry rorgotten how to spell that word put it another way would ect treatment be worth a go.Thank you. Tony.

A vote for ECT

I think this was the most lucid article I have read about ECT. I had many doubts about it since the same has been suggested for my wife 3 weeks ago. We took a second opinion but were still not sure. I think this has helped us make our decision in favour of ECT. I was also told that this isn't a one-time wonder treatment and she would require a few sessions. I would like to appreciate your honest and elaborate article on the same.

Same thought

I'm also thinking the same. This is a very informative and nicely arranged article about ECT. Be active always. To do that, you can play sports or watch movies with the apps like showbox or any other source. It gives you strength to face anything. Hope your words reaches many people like me. Thank you so much.

Thank you both for the above

Thank you both for the above comments. I am not a qualified psychiatrist and even if I were, I would not be able to recommend anything to you without having first got to know you and your personal/medical circumstances.

I can only share my story to help alleviate UNFOUNED fears abut ECT treatment. All I will add is that I got to that point where nothing else worked and I chose to give ECT a go. They say that necessity is the mother of invention: I think desperation is the mother of courage.....

ECT isn't a free ticket, even when it works. It has affected my memory (even if the effects have lessened through time) but I chose that evil over the evil of no life at all. Also, let's not forget that ECT doesn't always help.

I wish all of you, those who are ill and those who love you, the very best of good fortune coming your way. My heart holds your recovery as dearly as it does my own.

And remember, you are so much stronger than you think - this strength is not measured by your ability to lift huge weights or pull heavy trucks but by your willingness to consider that which is far beyond your current capabilities/circumstances. If someone had told me only two years ago (two years after the beginning of my illness) that I would be as I am now, I would have laughed them off, or worse I would I wanted to smack them in the mouth! And yet, here I am.

You can't see me but I am waving HUGE pompoms in your general direction to encourage you on YOUR journey of recovery :0)

Fellow travellers, I would love to know how you are all doing :0)

Gabrielle xxxxxxxxxxxxx

ECT is a wonderful life changing treatment

I absolutely agree with Gabrielle! ECT is the absolute best thing that has happened to my life! I spent many years on the bipolar rollercoaster and have been on every medication known to man with no results, however during my last disastrous manic episode I managed to ruin my entire life and with the crash came the suicidal ideations. I was hospitalized and given ECT and the results were amazing! My anxiety is completely gone, and I no longer need Klonopin or Ativan which I was on for mannnnnyyyyy years! My bipolar mood swings are also at bay...I have never been so even keeled in my entire life, and only a truly bipolar person would grasp what a miracle feeling even is! ECT has changed my life in sooo many ways, my anger (which was extreme and intense) is tremendously subdued, and my terrible lows have managed to disapear as well which is another amazing feat! I am so grateful for ECT, because of it I was able to stand on my own two feet and slowly rebuild the life I had destroyed while manic, and i mean destroyed! Two and a half years later I am relapse free and still quite even, and i only have to be on a low dose of minor medication. Most importantly now that my brain has been reset I can view life in a whole new almost normal way. You dont really realize how your perceptions are so off until they are fixed and now i am enjoying a life i never thought possible! The side effects are truley minimal, there is absolutely no pain, a little soreness after but that can be dealt with using Ibuprofen. My sleep is normal which it never was, my mood is wonderful (however not to up in a manic way) and my depression, anxiety, and anger have dissipated. Today I can accomplish anything I set my mind to which is a whole seperate wonder for a bipolar pt who never finished a thing she started. I am in school getting my masters, have a new career and a wonderful new life. The only other side effect is some minimal memory loss of the weeks preceeding the ECT, however I think of that as a godsend, because of those who have experienced a full blown manic episode it is usually something you do not want to remember, so for that side effect I am greatful!

Gabrielle I am so happy this has worked for you as well, and unfortunately most people will remain skeptics until they themselves have experienced the benefits or someone they love has. I would highly reccomend ECT treatment!

Thank you Colleen

It is good to hear a positive story about ECT because there is so much fear and bad press attached to this therapy. I fully understand how you feel about being able to lead a productive life: it does feel like a gift from the Gods, doesn't it?  Long may you continue to enjoy your life :D xxx

Positives for ECT

I had ECT treatment when I was 17 years old, following a number of suicide attempts. Medication wasn't working and I can honestly say I would not be here to tell the tale without ECT. I found Gabrielle's account very enlightening as I can recall very little detail from this time. My only memories are of a very kind lady who would administer the anaestetic, and friendly nurses who would always be sitting next to me as I woke up. Apart from a little tenderness, there were no side affects following treatment. Six weeks later I left the hospital to begin a new life. Twenty years on, I still have bouts of depression which I recognise coming on early enough for medication to deal with, however, I would not think twice about having ECT again if it was the best course of action for me. The only downside I would mention is that I don't have the best memory and need to write down information, dates and telephone numbers to help me remember. However, that hasn't stopped me recently completing a degree, and I also have the joy of being able to read books and watch films over and over again as I can never remember the ending!!!!

Thank you Annie

I am so glad to read your story Annie - I sometimes feel like I am a lone voice in the wilderness! I do not advocate ECT per se but I do testify to the fact that it can be a life-saving treatment. Yours is a wonderful testimony :0)

Very best wishes for continued good health.

Gabrielle

I have had ECT...

I have experienced ECT first hand when I was in the grips of a severe post natal depressive episode after having my daughter in 2006.  Like you have described it is not an old fashioned, barbaric treatment but a medical procedure which is proved to work.

 

I doubt I would be here now without ECT, I owe my life to this treatment.  When it was suggested my only thought was 'one flew over the cuckoo nest' but it is not like that at all.  I am actually speaking in Birmingham in September this year at the National ECT conference for the NHS about my experiences and am ECT poster girl in my trust!

 

I find that the greater proportion of society do not believe ECT still is used and that the few who do know believe it is outdated and barbaric, of which it is neither.  I am open in telling people about my experiences because a few years ago nobody said cancer, it was always whispered 'the big C' but now people openly talk about it... I want mental health illness and treatments to be spoken about freely in that same way.

 

Best Wishes to you, I hope you stay well.

 

Keep your grin up :)

 

Claire

x

Thank you Claire

I am so glad to be hearing from you! I will contact you directly to see when you will be speaking in Septembe: I'd love to go and hear you if I am around :0)

Very best wishes

Gabrielle

I'm sorry that closed minded

I'm sorry that closed minded people are allowed to comment here. Perhaps if that person had a life threatening illness and medication didn't work, they'd see ECT as a treatment option and not a "barbaric experiment".

Thank you for your comment

I understand what you are saying......  Close mindedness is nearly always caused by an underlying fear. As such, I welcome any negative comment because it gives me an opportunity to do my best to alleviate that fear. ECT, as it is usually portrayed, is very scary: most people I know visualise terrible things when they think of electro-shock treatment,. Frankly, by its sustained public silence, the medical/psychiatric profession is not helping much in this regard :D xx

ECT # 6

As I write this post, I am furiously searching the internet for any sign of how long....My husband has had bipolar disorder for 10 years and was misdiagnosed for 8 years. Past 2 years he has tried all medications with no success. He has had 3 hospitalizations since February and this last time we heard of ECT. But he has had 6 sessions and nothing yet. We are worried that it may not work. Hope it will. Gabrielle, did you have all 23 right in succession before your symptoms lifted?

Thank you for your comment

Unfortunately, ECT doesn't work for everyone and, even when it does, it works differently for everyone. ECT improved my brain functionality straight away but it did not eradicate the helter-skelter ride of my BPD altogether. I have to take drugs for that.

In your husband's circumstance I encourage you both with all my heart to keep an open mind and, more importantly to keep a place for hope in his treatment. My father did not show improvement until his second set of ECT. Your husband may be showing improvement but so subtly that nothing is noticeable yet so he will be feeling better slowly over time OR he will suddenly feel better. Unfortunately, nobody can tell.

I will hope for the best for you both.

Gabrielle xxx

ECT and my son

Gabrielle, thank you for sharing your thoughts publically.  At the moment my son has been ill for almost three years and no medication has touched his illness during this time.  His psychiatrist has recommended ECT but he is so frightened of losing his memories.  What is your experience of memory loss??

A worried Mum

ECT & Memory Loss

Hello worried Mum (boy! do I feel for you)

You don't say how old your son is and age does make a difference in the way memory is affected. Once again I will stress that no two people are identical and therefore no two people react to ECT in the same way. 

This is only MY experience of memory loss:

  • My long term memory was never affected.
  • My short term memory was immediately affected but it has now come back 100%. I took about a year for it to be fully recovered.
  • My mid-term memory is the one that has been most affected. I have a 'black hole' of about 5 years around the time when I became ill (let's not forget that severe depression also affects our memory) and the time when I had the ECT. Although my last ECT was nearly two years ago now, this 5 year black hole is still here.

I'll be honest here:  I got upset about it at first - even if I was prepared to put up with it because ANYTHING was better than where I had been (let's not forget either that severe depression itself is a pretty awful black hole).

This is how I have coped with the disruption to my mid-term memory:

  1. I don't try to hide it. If someone greets me and I do not remember who they are, I tell them straight away not to feel personally insulted because I have had ECT treatment and it has affected my memory.
  2. I ask people to help me 're-build' my memory of them by giving me little clues about when and where we have previously met. People are usually very happy to help me in this way and their help normally brings the memory back to the surface for me. I always thank them warmly for helping me in this way.
  3. As always, I laugh at my memory loss. This is what usually happens with my husband: "Oh that's a lovely place - I have never been here before..........  have I?"  "I wanted to buy this DVD because I have never seen this movie....... have I?" My husband then fills the gaps and helps me re-build my memory, and we laugh together. Sometimes the 're-built' memory sticks and stays, sometimes the 're-buit' memory needs to be re-built a few times for it stay in my head as part of my mid-term memory bank.

I can honestly say that my mid-term memory disruption is not too difficult to live with. Short-term memory loss is much more challenging (ask anybody who is suffering with early stage  Alzheimer or dementia) and so is long-term memory loss because it eats into our sense of self (where we come from is an important part of who we are).

If your son chooses to go ahead with ECT, he needs to be prepared to have a 'playful' memory as a result. The most important thing is NOT TO GET UPSET about it because getting upset blocks memory improvement. Being relaxed, up front, and ready to laugh is very very important.

I hope this has been helpful to you and your son and I wish your son a magical recovery.

Gabrielle xx

PS: Please let me know how your son gets on.

A couple of questions...

I'm really glad to find this blog about your experience. I'm 43, have Major (Unipolar) Depression & I'm very seriously considering ECT. In fact it seems I haven't much other choice, as I've been treatment-resistant with medication 12 years & even MAOI doesn't help. I'm very concerned about the risk of memory loss, but on the other hand I can't continue suffering like this - so empty and devoid of joy, it's just no way to live. However there are other factors that would make ECT very difficult to choose right now, responsibilities in my life, I'm really struggling to find the right path.

I had always thought that if I had to do ECT, at least I'd have my husband there holding my hand as I was being put under, and there by my bedside to ressure me when I came to afterwards. However it seems that isn't allowed, or you'd had Richard in there with you. What is their reasoning? I'm in USA but I'd guess the limits are the same as the UK. It seems it would be a lot less traumatic on the patient to wake to their spouse in the room instead of just some strange nurse.  I'm thinking at least I could write myself a large note with photos of hubby & pets, etc. ....  

Also, I can't seem to find very much info online about "preparing" for ECT, I mean like in the weeks/months prior (if you have time). I wanted to start a journal, take photographs, etc. in case I permanently forget this time, but as I can barely function, I can't seem to get round to any of it. Are there any things you can recommend that you wish you had done beforehand?

I think it's very brave of you to be so open about your experience, especially in light of our society's prejudices. Do you have any regrets about this choice? Even the professionals reccomend we "limit" who we tell for our "best interests." I understand why, but I hate feeling that I must make up lies about myself & my life - it feels so "phoney," deciding who I should "trust" & remembering which is which is hard enough even without ECT memory loss! We should have no more reason to be ashamed about our mental illness & treatment than say, one with Cancer who takes Chemotherapy. Anyway, I hope I'll be able follow your example. It's a difficult road as it is, but I know attitudes will never change unless we educate people.

Thank you Patricia

Dear God! You have suffered so much, haven't you! My heart goes out to you and before I write anything else please allow me to send you bucketfuls of love and encouragement.

Now for your questions:

  • In truth, I never asked for my husband Richard to be there with me as I was put under. I suppose I wanted to spare HIM the technicalities of my treatment because he was more nervous than I was. I must also say that the ECT team soon became like a second 'family' so I felt very at ease with them. I acknowledge this may not be the case everywhere
  • I have asked whether Richard's presence would have been allowed (here in the UK) and I will let you know. It would be very helpful for you to ask the same question of your own medical team in the US because there ARE differences in the way ECT is administered between our two countries
  • Here is one such difference: maintenance ECT is allowed in the US but it is not allowed in the UK.
  • I can understand your concern about memory loss and your responsibilities. I would have found it difficult to carry out any professional responsibilities for a few months after the ECT but then again I was totally unable to do it before the ECT because my brain function was so poor. I can honestly say that I managed housework and home responsibilities pretty well with the help of notes and reminders.
  • My memory loss did not affect anyone I was closed to: not my family, not my friends, not my neighbours, not my pets. It only affected casual acquaintances and one-off previous professional meetings. I never felt that I lost anything of great importance or value. The same had happened to my father before me so I did not feel the need to prepare for ECT. From my experience, I think the best thing to do about memory loss is to be relaxed and truthful about it. My memory functions very well these days except when I feel low - which you would expect. Having said all that, if it would reassure you to prepare for ECT in the way you mention, there would be no harm in it at all. The problem, as you point out, is finding the necessary energy to do it in the first place...
  • No, I never regretted having ECT. It was the beginning of seeing some light at the end of my long dark tunnel.
  • You are SO RIGHT about fighting the stigma that affects our condition! It is SHAMEFUL for us to be treated like lepers in the 21st century when we can see which parts of the brain 'malfunction' in cases of severe depression or BPD. All through the 30 years of my father's illness we lived our private hell in secret and in shame. I did too for 20 years or so and then decided enough was enough. Surprisingly, my 'coming out' has been a lot less catastrophic than I thought it would be. Most people 'stayed' with me and I have gained a huge number of new BPD friends. There is enough terror in deep depression without adding another layer of social fear...

I do not advocate ECT and I do not encourage anyone to have it either. I do share my experience truthfully and openly in the hope that this will help another poor soul going through what I went through to make up his or her own mind.

I wish you all you would wish for yourself and I feel totally confident that you will make the right decision for you (and for your husband too).

Gabrielle :D xxxxxxxxx

UGH  I have just completed

UGH  I have just completed about 13(?) ECT treatments, and I have no idea who I am!!!  I stopped them due to the memory loss...  Anyone else experiencing this right now?  I am a 49 yr old woman and I feel like I have Alzheimers!!  This is horrible!!!

Maintenance ECT

"Here is one such difference: maintenance ECT is allowed in the US but it is not allowed in the UK."

Gabrielle, what makes you think that maintenance ECT is not allowed in the UK?

Maintenance ECT

This is what I was told by the psychiatric hospital where I was treated.  If I became very illl again I could have more ECT treatment but I could not finish a course of ECT and then go on to one ECT treatment a month. This is what I meant by maintenance ECT.  If you have any information to the contrary please let me know - I would be interested to hear about it.

Maintenance ECT

Maintenance ECT is used by some psychiatrists/hospitals (a minority I would guess) and not by others in England. NICE guidelines do not recommend its use, but these are guidelines/recommendations only.

http://journals.lww.com/ectjournal/Abstract/publishahead/Use_of_Continuation_and_Maintenance.99839.aspx

http://www.bmj.com/content/337/bmj.a2998.full

Worcestershire's protocol on maintenance ECT can be found at appendix W (page 69) of this document http://www.worcsmhp.nhs.uk/media/211201/ECT%20Policy%20and%20Guidelines.pdf

 

 

Maintenance ECT

Thank you very much for putting me straight on this issue.  I appreciate the trouble you went to by giving links etc.

BIg Love

Gabrielle xx

This sounds horrific

When I hear ECT Treatment all I can think about is Sylvia Plath and her experiences with it... and the fact it is well documented that the "good effects" only last a few days. I can't imagine putting yourself through such torture for a few days of "good feelings". I will deal with my downs however I can but never like this. I am happy they helped you Gabrielle... but wow! Really that is all I can say on this subject@!!!!!

Thank you Anuran

The word 'horrific' is often the first word that comes to people's mind when they hear those three letters: ECT.  Yet, if I told you I was anaesthetised for 20 minutes to fix my leg or my arm, you would not think 'horrific'.  The trouble with ECT is that:

  • One, the treatment has had a chequered history to say the least
  • Two, although the way it is administered has changed dramatically people still hang on to what I call The Horror Fascination, the same fascination that has us watching horror movies (interestingly, I dislike horror movies intensely!)
  • Three, the benefit of ECT is often not about how long it keeps depression at bay (weeks rather than days is my experience) but that it can render our condition RESPONSIVE TO MEDICATION when it wasn't before.  For someone who lives every day fighting he urge to self-destruct with nothing helping to relieve the agony, that's a BIG plus I assure you!
  • Four, our knowledge of the brain is still in its infancy so we don't really understand how ECT works when it does.  All doctors know is that there seems to be a 'biological incompatibility' between epileptic fits and schizophrenia/deep depression, which is why ECT was first thought of.

I am NOT a proponent of ECT - I just tell my story. Having said that I will NOT be intimidated by the hysteria that usually accompanies the mention of ECT.  I cannot comment on Sylvia Platt's experience - I can only share mine  :D xx

ECT

Barbarism!! Call it what you want but thats what it is to me, My Daughter has just been brutalised by mental health 100% positive, she has a quarter of the coping skills she had before it, and is so damaged and hurt and weakened with a broken heart, and thats apart from the damage they caused because they made her their junkie, they addicted her and then tortured her because the drugs stopped working, what a joke thast is the(forced) drugs are what caused the problems in the first place, and then the ECT finished her off. And all because they failed , and when they were told they ghad failed , they ;locked her up  and electrocuted her, when it was their force and drug abuse that caused it all, how long does a broken heart take to heal doctor? will it doctor? what if it doesnt doctor? never mind the subjective mental dissorder.

I am so sorry to hear your story

Whoever you are, I thank you for having the courage to share your  daughter's appalling story on my blog.  No words can describe how I feel.  You do not say when your daughter's awful experience took place and where.  What you describe is everybody's mental health treatment NIGHTMARE.  One of the most distressing experiences I know is for drugs that helped for a while to suddenly stop working.  It's is indescribably dreadful.  The worst of t is that in this circumstance your own psychological and emotional health get so battered that it makes it extremely difficult to respond to any other treatment.  You do not say how old your daughter was and whether your poor daughter was a danger to herself - I expect she was. I also feel so much for YOU.  Watching your own child go through such a  terrible experience is heartbreaking.  How is your daughter now? Is she still in hospital?  What sort of care is she now receiving? What kind of support are you getting?  My thoughts and good wishes are with you both.

 

ECT - more

So, now it has been about 4 months since my 16th and final treatment. I don't feel the suicidal feelings as I did before the treatments, but I feel older and befuddled when I am only 49 years old. This disturbs me because I think I am too young to act this way and to be perceived this way! So that in itself depresses me. Plus, now that my memories are returning, I am bombarded with EVERY bad memory from my past constantly! I'm trying to get on with my life, but this memory thing (having to rely on others for my memories from approx a year ago to now) is DISTRESSING! So... I just don't know if it really helped me over all.

Thank you for your comment Anonymous

I hear what you are saying and I feel for you. You are right, memory problems can make us feel we have aged before our time.  

I have neve experienced what you describe, i.e. being bombarded by bad memories. This sounds AWFUL! I did experience sensations that took me back to my very early childhood but I used the opportunity to do some emotional healing work so it turned out OK for me. I wonder whether you could get help with  all those awful memories? This could help you heal some past wounds and you shouldn't be left to deal with all that on your own.

Considering all that you are experiencing, I understand how you could feel less than enthusiastic about the treatment you received.  I encourage you with all my heart to seek help - you deserve it  :0)

Gabrielle xx

Considering ECT

Gabrielle, I appreciate you extending yourself and your experience to those of us who are currently trying to make a decision on whether or not to have ECT therapy.

I have an appointment for a 2nd opinion this coming Monday, 6/6/2011.  This goes to prove that my psychiatrist is extending the option of ECT as another method of treatment and not pushing me into having the procedure done.

Here is a bit about me and my background.  I live in the U.S. and have had depression for about as long as I can remember.  Currently, I am 57 years old, so that goes to show just how long I have lived with it.  At 5 years old, I contracted tuberculosis and was sent away from my family to spend 6 months at an in-patient treatment facility.  At 10 years old, I was sexually abused by a friend of my father's.  Then I was abducted at age 16, the same age I was when my mother tried to commit suicide.  I was abducted again at age 18.

Perhaps my depression was genetically-oriented, perhaps it was due to these circumstances...and then again, maybe it was a combination of both.  Whatever the case, I have dealt with the inability to feel happy for as long as I can recall.

Throughout my life, I have been on many meds, some of which didn't work at all, some of which would work temporarily and then I would slide right back into the blackness of my depression.  Even when some meds helped somewhat, I never could feel truly happy.

My current psychiatrist is THE only person who informed me of ECT as an option.  Perhaps that is because he works at the University of South Florida (USF) Psychiatric and Neurosciences Department, which is partnered with Tampa General Hospital (Tampa, Florida, U.S.) in treating patients. From what I understand about USF, they are on the cutting edge of technology and treatment.

I have been doing online research on the subject, mostly articles from hospitals, doctors, and other medical institutions and individuals.  When I came across your blog and read about your personal experience, it was a breath of fresh air for me. FINALLY, someone who experienced the process and could relate it to others.

Thank you so much for your courage, openness, and showing me that there is quite possibly a light at the end of my tunnel.  I think after reading this, I am ready to seriously consider the treatment and will be talking about it with my psychiatrist at my next appointment the end of this month.

God bless and keep you. 

Mary R. 

 

 

Thank you Mary

Your story touched me deeply.

I can understand your 'despair', not justt because you have clinical depression but because you have had it for so long.

Having said that, I cannot begin imagine what you have lived through - I can try but I don't think anyone else can truly KNOW your suffering.

As for ECT, it is not a panacea. It helped me a lot and my dearest wish is that - should you choose to go ahead with it - it will help you as it helped me.

I am happy to hear that you are not in any way forced into it. Frankly, those of us that end up with ECT as an option are a pretty desperate lot aren't we?!?

GOOD LUCK Mary, and please let me know how you progress. xxxxxx

P.S.

Just wanted to say that I know you are not trying to talk people into having ECT.  You are simply sharing your experience.  I'm just saying this because it might appear to others who are not pro-ECT that your story made up my mind.  To that I say, no it certainly did not.  I simply saw it as another bit of research on my part.  The fact that I am going to have the treatment done is purely an informed and completely independent decision of mine.

I value your PS sooooo much!

THANK YOU Mary for adding your post-scriptum: it means so much to me that you understand I am not 'selling' ECT but rather offering information from the position of someone who has experienced it.

One again, all the best to you. xxxx

You are VERY welcome

You are VERY welcome Gabrielle.

I would like to add a little more information in relation to the help that I have sought for my depression.

I believe that, in treating depression, a multi-faceted approach is much more effective than an either/or treatment plan.  Thus, as I have tried various medications over the years, I was also seeing licensed mental health counselors and psychologists. 

I completely agree with ECT not being a panacea.  And, to this end, I will most likely be continuing psychotherapy for the PTSD from the traumatic incidents in my life.  Also, I suspect that my psychiatrist will be keeping me on meds, at least short-term, if not longer.  But ECT will be another facet of my treatment plan and I am hoping that it will work in conjunction with psychotherapy and meds in order to offer me the best possible outcome.

Tomorrow I have an appointment with a second psychiatrist for a second opinion.  Three weeks after that, I will meet with my regular psychiatrist to discuss it further.  Like I said, it looks like I'm leaning toward "Let's do this."  But until that day, I am learning as much as possible so that I can go into it with as much knowledge as possible and with no illusions.

I'll keep you posted, Gabrielle.  Until the next post, God bless and keep you.

 

  

 

 

Gabrielle,  I am a 54 year

Gabrielle,  I am a 54 year old woman with severe depression who is undergoing ect treatment and medication treatment. RIght now I am am still finding myself not engaged in anything around the house.  I find that my energy is nil.  I sleep most of the day and don't do anything during the day except sit on my computer which I was doing before I had a suicide attempt and found myself in the hospital.  I desperately want a life.  I have a wounderful husband who has stuck by my side though thick and thin.  I don't have any friends and I don't work.  I used to work as a nurse and would really like to get "back in the saddle."  My memory isn't the greatest.  I read for pleasure but not comprehension.  It was by happen stance that I found your bolg.  Any suggestions for getting back into the general world around us would be greatly appreciated.  I cannot find a way to get motivated and am losing myself.

Oh Sue ... you poor lady ...

The way you describe what you are going through takes me back instantly to 5 years back when I was in the same state of severe depression. You even use some of my language! No words can adequately describe what you are going through and yet you managed to communicate your intense distress in such a way that it hit me right in the heart.

You do not say how long you have been ill and whether you have been prescribed ECT because no medication had given you any relief to date. I assume that you arrived at that desperate unbearable point where there was nothing else for you.

I am acutely aware that I must be mindful not to project my own experience onto your own and yet some things have struck me:

  • You used to be a nurse, a highly responsible and stressful job which requires you to give a lot OF YOURSELF
  • You are obviously intelligent, strong and I expect generally impatient
  • You are a 54 year-old female and therefore of menopausal age
  • You are desperate to go BACK to the way you were
  • You feel like you are losing yourself.

What I am about to say may upset you greatly and yet I owe you the courage to tell you the truth as I know it after my own experience: the catastrophic cataclysmic event you are currently experiencing has occurred because:

  • You have always given others far more than you have ever given yourself, thereby creating an ill balance over the years that MUST be corrected for you to continue living on this planet. You have crashed because your system suddenly said 'no more'
  • You have hitherto always sought to understand and 'work on' what is going on around you and that has made you the powerful and efficient person that you are. It has also made you the vulnerable and fragile person that you are. The time has come for you to learn to BE. The only way for your body to teach you that is by taking away from you for a while the ability to DO. You are in the process of shifting your intelligence from knowing how to be strong to knowing how to be WISE. A very challenging journey indeed but an immensely rewarding one.
  • The menopause, with its earthquake-like hormonal upheaval, has dramatically altered your body's and brain's chemical balance. It is a well-documented time for tough hard-working women to crash.
  • Sue, the day I realised that (unlike in the movies) I could not go back to the future I took a big step forward. You can only go forward so avoid - and I know this is very hard - wasting energy wishing to turn the earth backwards. Do your best to adopt a curious attitude wondering where this experience is taking you. It will not change anything but everything will feel differently.
  • You are not losing yourself. Let me quote my 84 year-old mother. This is what she told me when I was crying over the phone one day telling her the very same thing: "oh ... I don't think this illness is losing you. I think it is revealing you". At the time it seemed an outlandish thing for her to say. I now know she was right.

You ask for you words on how to go back in the general world and so here they are. I am no font of wisdom so this is just to gently encourage a wonderful woman through her challenging journey:

Focus on going forward in the world - it's so easy looking backwards all the time. Work with your treatments - it's so easy to resent them. Listen to what your illness has to say  - it's so easy to assume it is only here to harm you (I have found out mine protects me against myself mainly!). Don't be afraid of your fear - it will only feed it your precious energy. What feels like your darkness is only there because you switch your light off - it's so easy not to want to feel your 'negative' emotions. Remember that you are loved AND worth loving - it's so easy to start loathing yourself.  Be still with this great truth: this too shall pass.

If you weren't already so courageous, I would say be brave. Instead I will say be patient (not my greatest quality but I have been working on it :D)

Stay in touch and let me know how your journey progresses,  you who are a Great Explorer in Dark Land  :D

Gabrielle  xxxxxxxxx

Thank you

I am trying as I said to get my life in order.  Today was an ect day so please forgive any misspellings.  I am hopeful because they did work.  This week will be a new beginning as the doctor increased the energy in an attempt to once again "kick start" my brain.  The only side effect I have from the experience is I get a very bad headache which is untouched by anything.  this lasts the entire day.  I am also pretty much a "bowl of jelly" as I am just exhausted.  I really want to get back to work but I am not sure if I am ready to go back yet or if I am scared.  Part of me says to just go for it and part of me wants to hold back.  Also I am not certain what type of job I am ready to take at this point.  I love nursing.  It's all I know.  Do I have the memory for it?  That's what's got me worried?  Maybe I need to just take the step and leap of faith.  In the mean time just knowing that there's someone out here to talk to is a tremendous relief. 

Still Fighting

Hey, Gabrielle!

WARNING:  This message will be long and rambling, so grab a cup of coffee before you read.  ;)

Well, here it is over a month later and I have not had one treatment yet.  Originally, I was going to go to a hospital over an hour's drive from our house because it was the closest "in network" that our insurance covered.  I went for the assessment appointment and found out the psychiatric unit I would be staying in was reminiscent of "One Flew Over the Cuckoo's Nest."  The only thing missing was Nurse Ratchet.  My husband took one look as we walked through the door and said, "Well, I've never been depressed, but I am now!"  If I hadn't been so over-the-top anxious about the facility, I would have cracked up.

Well, to make a long story short, I did not stay.  We went home and I called my insurance company the next day, requesting a doctor that had been referred by my pain management doctor.  Only catch was, both the doctor, the in-patient facility and the hospital were all certified for my insurance company, BUT, they were all out of network providers.  The bright spot was that the insurance company did a waiver and agreed to let me be treated by them, as long as they agreed to in network reimbursements.  And, I told them this up front, so I am covered.

Again, making a long story short, I have spent the past 5 weeks battling with Sam (doctor's secretary/nurse) to get a new authorization, physical, and labs-all of which are required pre-treatment.  She tells me to call the insurance company and have them fax the authization and the insurance company tells me that she needs to call them (NOT the patient!) and request the authorization.  You can proably see the writing on the wall here.  I got stuck in a loop between the insurance company and Sam for 3 weeks. 

At the same time, I was battling with Sam to get a physical and labs from my primary care doctor (PCM).  Sam would tell me to have my PCM fax the labs, I would tell her that she needs to call/fax to let my PCM know about the ECT authorization and request the physical and labs.  Sam wouldn't budge on this for two weeks!  I finally called my PCM, hoping they could help me out by calling Sam.  My PCM told me to tell her call them to let them know what is going on, AND to have her fax a requent for the physical/labs.

Yeah, well, AGAIN, I was caught in a loop.  SIGGGGGGGGGH!

So, to date, Sam had finally requested the physical and labs last Friday.  She called and left me a message on Monday (this week) that said she still needs labs.  So, I call my PCM and relay her message and get the same spiel from them about having Sam fax a request.  But, the thing is, she had ALREADY requested them on the fax she sent.  ::sigh:: 

I have an previously-scheduled appointment in the morning for fasting labs and I PRAY that this will include a CBC and Chem 12 profile--what Sam needs to go ahead and schedule me for ECT.  If not, I may be in for another week or two of battling.

My mood has gotten so bad, that I have been so overwhelmingly wanting to cut myself to relieve the immense emotional frustration.  I did go and get my butcher knife last week, but I managed to only poke my arm lightly with the tip and them put the knife away.  The things that have helped to keep me relatively sane are my weekly self-esteem meetings at a local women's center, going out once a week with one or more of the girls that attend the same group, and your blog.  I finally got up the energy to sit down and write this out to you.

Thank you so much for making yourself available for people who are going through some very dark times in their lives.  Hopefully, we do not lose touch and will be able to still communicate when God makes the clouds break and brings some glorious sunshine into our worlds.  You are one VERY special lady. 

God Bless, my Friend,

Mary R.

Oh my goodness Mary!!!

I cannot blieve it: how can anybody dealing with the huge strain of mental illness also deal with the sort of delibitating nonsense you describe!!!

You say that you managed to only cut yourself with the tip of a kitchen knife and frankly I am AMAZED you coped with that stressful frustration as well as you did. Even though I do not self-harm to relieve my pain I think I would have chopped one of my legs off....

This is a disgraceful situation that has no place in a civilised society. Imperfect as it is, I am so grateful for our National Health System here in the UK. Someone battling with a condition that is as appallingly dificult to cope with as yours is should NOT also have to battle indifferent administrative 'circular' systems that get you nowhere.  I sincerely hope that your situation will get resolved very soon and I send you a HUGE hug and many strong loving thoughts to support you on your way there.

Thank you for taking the time AND spending your precious energy writing to me - I truly appreciate it.

Here's aother hug  :0)

Gabrielle xx

think i am slipping

hi i have suffered with treatment resistant depression for almost 20 years now.4 weeks ago i finished my twleve session of ect.i felt good for a while,but now i feel i am slipping again.today i feel as if i am back to square one.why has the good feelings not lasted?8 years ago i also had ect and i felt well for much longer then.i cant help wondering what has changed.

thankyou karen

Hello Karen

I am sorry it took me so long to acknowledge your comment - I slipped too.

I slipped after ECT but I became responsive to medication which is what ECT really did for me.

Having said that, this year (2012) has been a year of 'slippage' EVEN on medication and I have had to increase my daily dose of meds to the maximum allowed to avoid constant suicidal ideations. I love your question: what has changed?  On the surface absolutely NOTHING. Why did my body suddenly decide to go into down mode and stay there for months - I don't know and nobody can tell me. That's jut the way it is.

I have never suffered the horrendous abuse you have, even if I had my share of childhood traumas. I also love your comment about deep chronic depression being a combination of genetic predisposition and emtional/psychological wounds - which is why Talking Therapies aren't enough for some of us and Drugs don't do it all either.

You mention your age and I have a sense that hormones are playing a signiicant role in your 'slippage' - at 61, I am pretty sure they are still playing a role in mine even if it is now 9 years since my menopause and the catastrophic crash it triggered for me.

Sometimes, I find it best to stop asking questions that cannot be answered. By all means try to understand what is happening as best you can in order to respond appropriately AND responsibly but if nothing can be identified that can be acted upon I would encourage you to accept your deressive 'slippage' and respond to THAT as best you can with all the means available to you. Otherwise we use a huge amount of energy banging our head against the wall of our ilness which only serves to make it worse.

I am not the font of all knowledge - just sharing, allbeit nearly a year too late, what I have learnt.

Such is living the life of a Bi-Polar Lander in Bi-Polar Land :0)

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