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Action on Postpartum Psychosis

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ECT

nchyme profile image
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Hi Ladies- hope you all are well. I'm writing because my ppp journey continues. I started getting ect treatments about 4 weeks ago, Ive had 10 treatments and seemed to have had some success. My doctor took me off of my medication so I'm only doing ect now. The issue is I don't want to do it forever and it seems like he's weaning me off very slowly over a period of several months. Just wanted to know if any of you have had ect and what your experience was? Thank you.

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Lilybeth profile image
LilybethVolunteer

Hello nchyme

Good to hear from you. I think I mentioned in your other thread that I had ect and found it really helpful. During my first PP I had 7 treatments in a psychiatric unit to begin with as I wasn't communicating and had been sectioned. I was also taking medication at the time. More sessions followed to lift my mood and I eventually fully recovered. Ect also featured in my second PP. My first sessions were in hospital and I had more sessions as an outpatient in times of crisis as I was still prone to self harm and acting impulsively. I was also battling depression at the time so I wasn't in a good place for a while.

In my case it was a very effective treatment and worked when medication didn't. Try not to worry, you won't be on it forever. I'm not sure how the treatments are monitored. Perhaps when your doctor is satisfied that you are more stable, he will discontinue ect and put you back on medication? I'm only supposing this as I'm not a medic.

It's quite an overwhelming treatment so please be gentle with yourself and take care.

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi nchyme, I had ect as part of my treatment for pp nearly 8 years ago now. It was a case of trying something different whilst in the first weeks of my illness medication wasn't working, or at least it wasn't working quickly enough. In my case, the treatment made a huge difference and was the kickstart I needed to get me through those awful months, together with the right balance of meds (anti-psychotic and lithium, which I took for a year and 3 years respectively). I had 12 ect treatments altogether (I think) although I can only remember the last few sessions as I have a blank for a few weeks earlier on. And whilst I say I remember them, I remember going to the area of hospital it was done and having the anaesthetic then waking up afterwards, a little tired and dazed. But it made a big difference to me and can be an effective treatment. Recovery from pp can be hard and take a while. Hang on in there, try and be patient and kind to yourself (easier said than done, I know!) and you will get to where you want to be. Take care, xx

nchyme profile image
nchyme in reply to Hannah_at_APP

Thank you for the response! I agree that recovery from pp is hard and takes a while- I still have guilt and shame for my behavior when I was psychotic 7 months ago. Initially they prescribed me zoloft and it seemed to make things so much worse. I did not receive appropriate care initially and I've had a really hard time coming to terms with that. I became suicidal while on zoloft and I just carry the images of my attempt with me in my head, it is so painful and I wonder when they will fade...

nchyme profile image
nchyme in reply to Hannah_at_APP

Hannah, did you experience any permenantl ill effects from ect?

Hannah_at_APP profile image
Hannah_at_APPAdministrator in reply to nchyme

Hello again nchyme, apart from the slight headache immediately afterwards, which Lilybeth also mentioned, I've had no permanent ill effects. Whilst I can't remember the first few weeks I was in hospital I understand that this could be due to the ect - but I also think it could have been due to the trauma of the illness.

I work and have a full and happy life, I really don't think the treatment has affected me negatively. Before I was discharged from hospital I had an MRI/ CT scan which is something you may want to ask about too - I think it's quite normal after ect, to check for any issues after the treatment. Mine was fine and I've not had any issues.

I hope this helps you, it might also help you to have a discussion with your healthcare professionals. Take care, all the best, xx

nchyme profile image
nchyme in reply to Hannah_at_APP

Hannah did your emotions become blunted after ect?

Hannah_at_APP profile image
Hannah_at_APPAdministrator in reply to nchyme

Hi nchyme, I was quite "flat" for some time in my recovery from pp, but I don't think this is attributable to the ect. The meds I was taking were also very sedating and my dr described it is as a "chemical flattening" which really resonated with me. I think that recovery from this illness can be tough, up and down, and take time. But I am absolutely back to myself and my emotions are still as they should be. I'm sorry that you're feeling so worries about the treatment. Have you managed to talk to a supportive professional about your fears? I will be thinking of you, this is such a tough time. If you can get through it, we are all Herero listen. Take care. Xx

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Thanks for reaching out for support through these hard days. We really do understand that it's not easy, especially as it's early in your recovery. Are you still seeing your therapist twice a week as well as ECT treatment? I think it's important to keep talking so that you can get support and eventually come to terms with everything you have been through.

What happened to us during the awful psychosis was out of our control ..... we really had no choice. In time you will be able to park the guilt and shame knowing that you are a great mum. You have done really well considering you didn't have the right care at first. Some days are hard but keep talking and don't isolate yourself because of your unfounded guilt.

Try to distract yourself from the negative feelings. Is it possible to meet a friend just for coffee and a chat? Make sure that you tell your care team how painful and raw the memories are so that they can support and reassure you. You have had such a traumatic illness that will take a while to heal. Years ago I also felt guilt and shame but since sharing experiences with other mums here I have come to accept that I wasn't a bad mother and my self harm attempts were more a cry for help than anything more.

We are all here to talk if it helps. Take care.

nchyme profile image
nchyme

Thanks Lilybeth- do you think you suffered side effects or brain damage from the ECT?

Lilybeth profile image
LilybethVolunteer

Hello nchyme

I didn't have any side effects, just sometimes a headache but that was all. I haven't had any ill effects, my memory is good and I'm still working. Just hold on to the courage that has carried you this far .... I know it seems endless but you will have better days.

Thinking of you, take care.

nchyme profile image
nchyme in reply to Lilybeth

Lilybeth, I've read some very troubling articles online about brain damage caused by ect. I'm just really scared.

nchyme profile image
nchyme

Thank you. I'm really worried about the ect side effects, it's been hard. I'm glad you've suffered no ill effects though!

Lilybeth profile image
LilybethVolunteer

Hello nchyme

I can understand how worried you must be. There have been a few posts on the forum about ECT experiences and if you type ECT into the search box you might feel reassured. Perhaps before your next treatment you might be able to talk about your worries to your consultant? I was treated under general psychiatric care and thankfully had no permanent ill effects.

Take care and please keep in touch if we can help.

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Within the posts on the forum there's a helpful summary from the Royal College of Psychiatrists in the UK, the link being rcpsych.ac.uk/expertadvice/...

Take care .... thinking of you.

nchyme profile image
nchyme

Thank you I'm feeling very afraid.

Lilybeth profile image
LilybethVolunteer

Hello nchyme

I can understand that you are feeling afraid. Perhaps you can talk to the Consultant about your fears so that you can be reassured? For me, ect worked quicker than medication as I was not communicating and very ill at the time. I hope you have support around you.

Stay safe and take care.

nchyme profile image
nchyme in reply to Lilybeth

Lilybeth did your emotions become blunted after ect?

Lilybeth profile image
LilybethVolunteer in reply to nchyme

Hello nchyme

It took a few treatments for me to become aware of my surroundings. After my first PP I was in various units for six months before I went home, although this was a long time ago. After my second PP I was mainly treated at home and had ECT initially as an inpatient and then as an outpatient in times of crisis.

Thankfully my emotions are intact and not blunted. I found ECT worked for me and fortunately I had no ill effects even though I had a lot of treatments because I had PP twice.

I can see how hard it must be for you to have this choice. Like Hannah, the decision to have ECT was made for me as I wasn't communicating. I can honestly say it made such a difference in my recoveries and I had no ill effects.

I hope you have support around you. Take care and please keep in touch if we can help.

Ellie_at_APP profile image
Ellie_at_APPPartner

Hi Nchyme,

I'm sorry you're feeling afraid about the ECT. I agree with Lilybeth that if you can talk through with your consultant / mental health team supporting you, how you are feeling.

I don't have personal experience of ECT but I did want to tell you that I have heard several women's experience of having ECT and they have said that though it was difficult and emotional, that it was positive in the end and really helped them (some even said it saved their life!), and it sounds like you have been feeling some benefits already?

I can't remember if you have some access to therapy / counselling, as it really sounds like you need some support to deal with all the difficult memories, and everything that happened with your PP?

Thinking of you XX

Lilybeth profile image
LilybethVolunteer

Hello nchyme

I hope you are well and recovering in your own time.

Take care.

nchyme profile image
nchyme

Thank you Lilybeth, I'm having such a hard time I fear my memory has been impacted by the ect, I'm having a hard time remembering things recently....

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Good to hear from you. I'm sorry you're having a hard time following ect. Are you in the middle of sessions or have you finished a course? Just to reassure you, memory loss is usually a short term side effect and you will probably find that your memory returns as you recover.

ECT is a hard choice but with good after care support you will eventually notice an improvement. I really hope you have support around you at home as it's not easy coping with routine when you are going through so much. We are all here to support you if it helps to get through the difficult days.

Stay safe and take care.

nchyme profile image
nchyme

Thank you Lilybeth. I finished up about 4 weeks ago. My husband and I have marital problems. This has been so hard. I'm so afraid these memory problems will be permenant. I'm just having such a hard time. I'm in therapy 1x/week and it seems to help but the memory problems really scare me.

Ellie_at_APP profile image
Ellie_at_APPPartner in reply to nchyme

Hi nchyme I'm sorry to hear you're having memory problems after ect, try not to worry. It is one of the side effects but in the majority of cases it does go. I know it's hard not to feel anxious about it.

That's so hard you're having marital problems too.. you are most definitely not alone in that. It really takes its toll on a relationship. Things were so hard for me and my partner a few years after pp, we just weren't communicating, and I couldn't seem to make it any better. But slowly we got there, I have to say a bit of a turning point was when we went away alone together for one night... maybe you could consider something like that? Perhaps when you're feeling a bit stronger and more recovered?

Thinking of you xx

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Sorry to hear about your problems at home. This is such a difficult time for relationships and very hard for partners to sometimes understand. My PP took its toll on my husband and unfortunately he did have a breakdown while I was recovering. Try to keep talking to each other. We eventually weathered the storm and were stronger as a family.

I know it's hard but try not to worry, I had a lot of ect having had PP twice and my memory is still intact. Give yourself time and hopefully the therapy you are having will help you.

Thinking of you ....... take care.

nchyme profile image
nchyme

Thank you. As the days go by my memory seems to be worsening and Ive read so much scary stuff online Im very afraid I have brain damage. Im crying right now so frightened and unsure of what to do and how Im going to be able to care for my baby.

Lilybeth profile image
LilybethVolunteer

Hello nchyme

I'm sorry you are so upset. Has your therapist been able to reassure you or can you ask the psychiatrist to allay your fears? Perhaps having an MRI / CT scan as Hannah mentioned in an earlier reply would help? Try not to put so much pressure on yourself.

Take care.

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi nchyme

I'm sorry to hear you are upset and worried. I would really encourage you to get an appointment with your Dr and explain your fears, there should be some further information and guidance they can give you. Did you have any sort of scan after the treatment finished, perhaps this is something you can ask about?

I was talking the other week to someone about the time period when I had ect and they told me about conversations then where I'd forgotten places and events from before my pp. But I absolutely remember them with no problem now, even if that particular conversation is a little vague, when I didn't remember.

What I guess I'm trying to say is that this may be temporary and recover from this bump in the road on your recovery journey. I don't know if the Royal College link might be helpful to start a conversation with your Dr about your worries: rcpsych.ac.uk/healthadvice/...

I can only speak of my own experience of ECT and how 7+ years on I am well and truly thankful that it was part of my treatment alongside medication and support from a mother and baby unit and others, both family/ friends and professionals. Memory can be a difficult thing to understand and our memories can be good and bad due to several reasons, which can also be changeable.

Recovery from pp is so tough at times and I was certainly on that bumpy road during the years after my episode. Please hang in there and I hope you can talk to an understanding health professional who will be able to help you further. Take care, xx

nchyme profile image
nchyme

Thank you, my doctor will not meet with me he told me if I no longer do ect then I am not his other and I'm discharged from his practice, he abondoned me and its very painful.

angviolet profile image
angviolet in reply to nchyme

Hi nchyme, how are you feeling? Have just read this thread, so sorry that you have not been feeling well again. It's so hard when your relationship starts to get affected. Just wanted to tell you that. Even without ECT my memory was crazy after my PP and severe lack of sleep. It scared me so much. I'd see people that I used to know their name and everything and I just had absolutely no idea who hey were, I just knew that they looked familiar and that I should have known them. I would make an appointment to see the doctor then completely miss it the next day, I bought a household appliance put it in the draw then I went and bought it again a week later. i think sometimes memory loss is just because you have suffered so much stress to your poor mind but it will get better as the weeks and months and years go by. And remember how everyone says motherhood is the hardest job in the world so throw in suffereing a severe mental illness and it's no wander we have memory loss too. Don't worry too much about the blunted emotions. I have definitely experienced that with medication, the antipsychotics and antidepressants in particular. But slowly I felt like they all came back to normal. Don't beat yourself up, you are doing an amazing job with your recovery , trying to juggle this horrible illness with problems with your marriage which can cause such depression as well as being a mum is all very stressful. Always remember it's a temporary time, and one day soon you will be your old self again and everything will be so much easier to manage. I thought I would always have a different personality or a stuffed memory but it's gotten so much better 12 months on. Hope you are ok. Wish we could all meet up in person to give each other support when we really need it. Sending lots of love to you and your baby xx

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi nchyme, I'm so sorry to hear that your Dr is not being supportive. Is there another professional you can ask to see? I'm aware that you are in the US and I don't have experience of how the healthcare system there works, being in the UK, so I'm sorry I can't help any further. I hope you can get some answers soon, and in the meantime, please try to rest up and relax, we're all thinking of you and wishing you all the best, xx

Hello nchyme,

my name is Sabine and I had PPP in 2010. I have been reading this thread today. How are you?

I have had no ECT treatment, but struggle with anxiety issues (agora and social phobia) after recovering from Post Partum Psychosis. Some of my experiences, when hospitalised in a mixed gender unit were rather traumatising and very frightening. Especially when not receiving appropriate care and treatment for several weeks.

Recovery is of great importance and stress factors do affect us all in different ways. I am lucky that my partner always has been so understanding and even taken care of me full time and then part time for one year.

I wonder what support network you could develop? Professionals are important, especially throughout the recovery process. Simultaneously friends and family members can be of vital importance. I hope that you could find a new doctor, who may react more sensitively towards mental health issues, - somebody who shows empathy and you can trust.

Obviously I do not know about your health care system. Are there any charities and/or other organisations for counselling, family support, child care support or organised play groups etc.?

Women on this forum will be thinking of you. In the meanwhile wishing you strengths. All in stepping stones.

Good luck, Sabine :-)

nchyme profile image
nchyme

Thank you all. As the days go by after ect 3 weeks ago, I am still not remembering day to day things, names and faces almost impossible to remember, I've forgotten the lyrics to my favorite songs, cannot do math hardly. I'm terrified and devastated any moms it there who had ect did you experience these things and did it get better. I'm beyond terrified.

Lilybeth profile image
LilybethVolunteer

Hello nchyme

I'm so sorry to hear how distressed you are and your doctor doesn't seem helpful. I'm also not sure of the healthcare system in the US. Perhaps you might be able to contact the Postpartum International support group, postpartum.net/get-help/loc... for local contacts in your area? In the meantime we are all here for you.

As I mentioned earlier, I had ECT following PP with both sons. I've been through my notes and I was given a total of twenty one treatments. To be honest not only did the ECT help me to recover more quickly than medication but it also blocked out the memory of my manic behaviour on both occasions which I have since read from my notes and jogged my memory. So in that way it was very helpful. My parents have never spoken about my illness and at the time asked my husband to do the same, due to stigma in those days, so I wasn't aware I had PP.

Try not to put so much pressure on yourself although it's not easy. It must be a very difficult choice to make for yourself. I have had no ill effects from the treatment and all these years on I am convinced that it was the right treatment for me.

Sometimes I find it hard to put a name to a face or forget lyrics to songs but I don't link it to ECT, it's just 'me'. I hope you have support around you to help you through these feelings.

Thinking of you ..... take care.

Sally_at_APP profile image
Sally_at_APPAdministrator

Hi nchyme,

Sorry you are having a hard time at the moment. I hope you are feeling ok. The side effects of ECT are different for different people, but memory loss is quite common. This tends to only be short term, but it can be quite scary at the time.

I had PP in 2015, and I had course of 10 ECT treatments in January 2016. I don't remember much from that time, but I do remember being very scared about my memory loss. I couldn't remember people's names, what people had done, I didn't remember that my best friend was pregnant. I had real trouble with maths too, and anything cognitive, like reading, following instructions, plots of films and TV programmes and reading timetables etc. I can identify with you in that it felt abit like what I imagined brain damage to be. However, over time it did get better. I still dont really have much memory of when I was treated, and I'm not sure it will come back (which may not be a bad thing), but I am so much better with day to day things. I can remember conversations, I am back at work reading and writing things.

It's difficult to know whether some of what happened was due to the illness or the ECT, but I definitely felt my memory was worse after the treatment in the first few months.

I know everyone is different, but I do hope you take some comfort in the posts here and know that things will get better with time.

Take care,

Sally xx

nchyme profile image
nchyme in reply to Sally_at_APP

Hi Sally how long did it take to come back?

Sally_at_APP profile image
Sally_at_APPAdministrator in reply to nchyme

Hi nchyme.

It's difficult to say, as it was quite a slow process. It was bad for a couple of months, but gradually got better after that. However it is different for different people, as some people don't suffer from memory loss. Have you finished your course of ECT, or is it still on going? Have you mentioned the side effects to your health professional?

Sally xx

nchyme profile image
nchyme in reply to Sally_at_APP

Hi Sally, I have gotten Neuropsych testing which does show short term retrieval problems and memory loss. I'm getting mite advanced testing next week. How many lots of ect did you have? How long ago?

nchyme profile image
nchyme in reply to nchyme

Sorry for that question I see you already answered it above. That is due to my memory problems.

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Thinking of you and hope you are ok. It's a very difficult time for you so I hope you have found support for yourself.

Take care.

Sally_at_APP profile image
Sally_at_APPAdministrator

Hi nchyme,

I hope you are ok. That is good news (I don't meant good news about your memory loss, just that you are getting more tests and they are taking you seriously). It must be a very scary time. Please keep talking to people and tell them how you are feeling.

Not a problem, please don't apologise, you are going through such a hard time. I had 10 sessions which ended in January 2016. Have you finished your ECT treatment?

Thinking about you,

Sally xx

nchyme profile image
nchyme

Thanks Sally did it get 100% better for you steer ect with the memory and issues you describe?

Sally_at_APP profile image
Sally_at_APPAdministrator

Hi nchyme,

Things are so much better these days. I do not really have much memory from the time I had the treatment and I do not think this will change.

But I am much better day to day. I still have a few minor problems with memory, but I honestly think that's to do with everything I've been through, and possibly having a 2 year old! (A lot of my friends with children have similar problems with their memory and they haven't been ill!).

Anyway, I hope you are ok. Do let us know how your appointment goes if you feel up to it, thinking about you,

Sally xx

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Just wondering how you are? Have you been for the advanced testing yet? I hope you are ok and coping.

Take care.

Sally_at_APP profile image
Sally_at_APPAdministrator

Hi nchyme,

Just letting you know I'm thinking about you and wondering how you are. How did your advanced tests go?

Sally xx

Lilybeth profile image
LilybethVolunteer

Hello nchyme

Thinking about you and hope you are ok.

Take care.

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