Has anyone ever declined meds or only... - Action on Postpar...

Action on Postpartum Psychosis

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Has anyone ever declined meds or only taken them for a short time?

I just want to emphasise that I am not looking for advice - I am currently well and not on any medication... but just thinking about the future and would like to hear of other's experiences. I have been reading a lot about the idea of "spiritual emergence/emergency" or "spiritual crisis" and am interested in alternative ways of handling a "psychotic" episode, where this may be appropriate.

I know this is a sensitive and controversial topic, and that everyone is different. I am not anti-medication but like I said, just interested to hear of experiences that were different to mine (I have had two crises and was on Olanzapine for roughly 10 months after each). The second one was much milder and I was only on 5mg right from the start.

If you would prefer not to share your experience in public, then I'd love it if you could message me instead :) Thank you!

14 Replies
KatG profile image

Hi Peppermint Pig it’s an interesting question, for sure! You might be interested to look up some of the experiences of people like Jean Paul Sartre and others in the 1920-1950s who took early hallucinogens to deliberately bring on psychosis. They thought psychotic episodes might in some way lead them to increased enlightenment/understanding of the world. It’s one approach, anyway! I find that whole movement fascinating :)

In terms of non medication approaches to treatment of postpartum psychosis, you might want to get in touch with a lady called Sanchita Islam. She’s on twitter and Facebook and writes quite often about her non-Meds-based approaches to keeping well (she’s had PP and also bipolar / schizoaffective disorder, I think). From my understanding, she uses healthy lifestyle/diet, and most importantly creative and art therapy approaches. She is an artist and musician too, and her work is really incredible.

Hope this helps, sorry I don’t have any personal perspective to share - I’m very much a grateful recipient of Olanzapine/ Quetiapine here. But I do understand that Meds can’t be the only answer, especially not in the long run. I’m really happy to be off Meds currently, and I use a combination of diet and exercise and rest periods to keep well.

Happy New Year!

Kat x

in reply to KatG

Hi Kat,

Thank you so much for your reply! I didn't know about Jean Paul Sartre, sounds interesting! And thanks for letting me know about Sanchita Islam too - I'll definitely check her out :)

Happy new year to you too ;)

Maria x

Ellie_at_APP profile image

Hi Peppermint_Pig

As Kat says, it's an interesting question and something that others can relate to I'm sure. I hope that you receive some good shared experiences.

From my own personal experience, I definitely needed the medication to get well as quick as possible. Postpartum Psychosis (the episode after birth) is usually very extreme and rapid and so does require medication to get under control and help Mum get well as quickly as possible. And for myself personally if I had another psychotic episode I would definitely take medication again, so I don't have the personal experience to share that you are asking for.

However, I agree that in terms of ongoing wellness, and stability, other things play a big part, and I think there is a lot that can be done in order to stay well, or prevent and manage further episodes, as Kat has shared. I haven't had any further episodes since PP, but I am always aware of my mental health, and try to do a lot to stay well and balanced. For me these include getting enough sleep, meditation / prayer / mindfulness, art, reading, just doing things that give me life really (this will obviously be different for each person).

I was also interested in the 'spiritual emergence' which you mention. For me personally, the PP episode, and ongoing recovery and coming to terms with what has happened has been a profound spiritual experience for me. For me experiencing huge darkness and tragedy has been an opportunity to grow spiritually (and by spiritually I mean it in the widest sense, which is hard to define).

I've read quite a lot of spiritual books and it has been fascinating to find writers saying similar things to what I have experienced across all spiritual / religious traditions, e.g. Buddhism, Christianity etc - that when we experience huge darkness or tragedy (this can be anything difficult that we experience in life) there is the opportunity / possibility to grow spiritually, and I absolutely believe this as this has been my experience. (E.g. the Buddhist symbol of the lotus flower)

Anyway please do take or leave anything I've written, I just wanted to share my experience, just in case it was helpful.

Take care

Ellie X

in reply to Ellie_at_APP

Hi Ellie,

Thank you so much for taking the time to reply. It's interesting that you were also interested in spiritual emergence. I actually experienced a sort of "crisis of faith" after my episodes... before I'd heard of spiritual emergence and before I'd realised that any good could come of my episodes...

I'm seeing a therapist now who is absolutely brilliant. He has said we will go back through my two episodes and "retrospectively apply a witness" because if people in other cultures or in tribes went through something like this, it would never be alone. This alone is incredibly healing for me, given that I was made to feel by medical staff (and family who wanted to help but didn't know differently) that my thoughts, feeling and experiences during my episodes were meaningless and just symptoms of a confused and ill brain. Right from the start I felt this was not the case but I felt beaten down until I was really starting to doubt my own instinct as well as feeling rage and fury towards my brain for "letting me down". I felt like I couldn't trust my own brain.

Having found out about spiritual emergence, I feel validated again - like I can trust my initial instinct. I remember emailing my peer supporter after my first episode saying I believed it could have been related to a kundalini awakening... both of my episodes started with powerful kriyas (spontaneous movements often associated with meditation and energy work) but in the midst of crippling depression I forgot all of that and just focused on how unfair it all felt.

For me personally, the episodes themselves weren't that bad... Scary at times but overall interesting... but what was traumatic for me was the way I was treated - sectioned... and many of the staff who took care of me that first time spoke to me like someone who was severely disturbed - not someone who was intelligent and just happened to have had something like this happen to them. The second time was not much better... Staff gave me conflicting information about medication... even made things up... One time a visit was promised and nobody ever turned up... phone calls were late or missed... and one psychiatrist even said to me (after these incidents), "We need you to trust us so that you're not incarcerated again". That one really upset me... as I'd already told them how traumatised I was by the way the first episode was handled. The psychiatrist then even got defensive over how upset I got over her choice of the word "incarcerated" as if it was my problem! The truth is that I was nowhere near needing to be sectioned the second time and I had been threatening to make an official complaint because of all their mistakes... and this is what she said. Hardly a way to get someone to trust you again... ANYWAY, I digress, the aftermath of the second episode is still quite raw - we've not got there in therapy yet ;) My point was that the darkness and tragedy for me was the way I was treated during/after the episodes and the crippling depression that followed...

I cannot see any good in those... but I can see good in what I experienced during my episodes, and if I can mine those for gold now with my therapist, then that will help me a lot I think. And perhaps take away some of the sting of what happened afterwards, I hope.

Maria x

Ellie_at_APP profile image
Ellie_at_APPAdministrator in reply to

Hi Maria,

It's so good you've found a good therapist that suits you, and has that spiritual dimension that it sounds like you really need...

Though we have all had PP I imagine each of us has different experiences of the illness, and also different life / spiritual experiences and beliefs too and so I suppose this topic (about spirituality, linked to medication etc) affects some people, and not others...

I know I needed different things at different times in recovery somehow... there was at one point I couldn't think very deeply about things I'd experienced when I was unwell /psychotic/severely depressed...I just felt I needed to focus on the very practical things, getting through the day, and staying grounded... it sounds like you felt you needed to do too. Later on, more recently, (the last 3-4 years maybe) I've felt more of a deepening spiritual experience /understanding about what happened, but also about life in general... I would probably describe myself as striving to be a 'contemplative' if I had to put a label on anything...(though I do hate labels)!

I have a very special friend, who is a spiritual director, who helped me (and continues to) so much to work through stuff, the spiritual side of things... the delusions in the psychosis (negative and positive 'spiritual' experiences) but also just coping with the depression, the low self esteem, and feeling like I was an awful person... she mirrored and helped me to experience an unconditionally loving 'God'/higher power when I needed it so desperately, to heal... so it is wonderful that you have found someone to help you too with any spiritual experiences that you have had. I really believe without her support I wouldn't have recovered as well so I can totally understand how you feel this is something you have really needed and that was lacking before...

I'm sorry to hear you had such negative experiences from mental health staff, that is really sad to hear :( I agree, from hearing many people's experiences, receiving bad professional support makes the trauma from the illness etc increase so much more, and like you say, where a lot of the trauma comes from. I have to say I had generally good experience with mental health staff. In the MBU they were generally so supportive, and caring, and quite holistic, and back at home too. I hope your therapy can help you come to terms with the negative experience and trauma you experienced too.

Take care, and I hope it has been helpful to share on here. Thanks for sharing so openly about your experience.

Ellie X

Hello Peppermint Pig. This question interests me as well. I was medicated with quetiapine for PP but am now almost completely off, 4 months later (just started an antidepressant though). I still don't feel like "myself" but I found that with each meds reduction I have felt more like myself which confuses me in terms of what the meds were/are actually doing. I guess they took me out of acute psychosis within a few weeks but then they somehow made me dissociated (which I didn't know whether to attribute to the illness or the meds). It's a very bizarre experience, as you know. A real mind-warp.

Anyway, I was given 2 books by Stanislav Grof on the concept of "Spiritual Emergency" and I related to a lot of what I read. It's interesting because it seems like for some people with mental illnesses thinking along these lines can be kind of "triggering", and for other soothing. I met a woman in the psych ward who had schizoaffective bipolar and she said she hated yoga and meditation and anything spiritual because it freaked her out. On the one hand I can relate to that in the sense that during the most acute phase of psychosis I was just trying my best to stay "grounded" and anything too spiritual would "trip me out" so to speak. But as I began to recover (I'm still in the process), it's like I needed a paradigm through which to view my illness that wasn't just a matter of brain chemistry. I still try to be careful and not get too carried away with this type of thinking as it can unground me, but it does help. I've been a "spiritual" person since childhood, and during my pregnancy I embarked on a "chakra cleanse", spending a week on each of the 7 chakras. I later consulted a spiritual healer who said that I may have started a so-called "kundalini awakening" that I wasn't ready for and that it contributed to or even caused my psychosis. She told me that the process wasn't completed, possibly because the meds stopped it, and she said that's a good thing because I could have been a lot more damaged had it been completed. I'm not sure what to think about that but it's one possible explanation among many. I've also heard that kundalini naturally awakens in one's 40s (and at that time it's "safe"). I did in some sense feel that I was playing with forces beyond my understanding. I was just trying to prepare for birth and motherhood but I suppose I should have been more careful.

Anyway, I don't have any real answers for you but I have been trying to explore this side of it as well. I think the truth is, as always, multi-dimensional and infinitely complex. I keep wondering how PPP would be dealt with in a tribal/shamanic culture. And I wonder about the spiritual nature of many people's psychoses. When I was in the hospital I felt absolutely terrible (I had a very depressive psychosis with no mania/high) but I also felt like I was sort of ego-less and seeing things on a level most people don't. I still feel like that and I am still pained by it. I actually just want to get back to having an ego, a sense of self, some ground beneath my feet. Have you heard the quote, "The mystic swims in the same waters that drown the psychotic"? I like it but it also depresses me as I feel I was not able to "swim" in those waters....

in reply to kaktus

Hi Katkus,

Thank you so much for your reply - what a huge relief to "meet" someone else who feels they have been through something similar to what I feel I have! (That was a long sentence! And breathe ;) )

4 months isn't very long at all - I didn't even know that was "allowed"! I was told 6 months to a year with mine (both times) although perhaps it was because I was on Olanzapine, not Quetiapine? Just out of curiosity, where in the world are you? Are you in the UK? I'm in Wales...

I think bizarre is probably a very good way of describing it! I've started reading one of Stan Grof's books, "The Stormy Search for the Self" and can related to a lot of what I'm reading.

It's interesting what you say about some people being triggered by thinking about things in this way. Personally, I find it much more triggering/upsetting to think that what I experienced was purely a mental illness with nothing more to it. Actually, I've avoided this forum for months for that very reason. Both of my episodes started with powerful kriyas - before any "unusual" thoughts or beliefs came into it. Also, with my first episode, a friend came into hospital to do some healing on my back (I was suffering from excruciating back pain after my cesarean) and the two of us ended up doing healing work on each other while both having these kriyas over a period of hours (luckily I had a private room!!) and my friend wasn't and isn't mentally ill - so I know that this was real. We had both experienced these spontaneous movements before, although hers had been much stronger than mine (for example, spontaneous yoga postures that she had no conscious knowledge of)... mine had been limited to jaw movements, hand movements or facial movements... but on this occasion were full body movements...

So, to get back to the point, I felt strongly from the start that there was more going on here that just a "hormonal imbalance" as I was told by the medical staff...

Similarly to you, during the peak of my episode I was trying my best to ground myself, although I was doing this without knowing why. I didn't know that I was ungrounded (although I am sure now that this was the case!) but I just felt intuitively that I needed to eat meat and grounding food... at one point I was choosing three types of potato with my meals (e.g. chips, jacket potato and mashed potato!) because I felt potatoes were grounding, but this just made me look more insane!! It was hard for me because when the episode first came on, I felt a physical aversion to meat... couldn't even pick it up... and just ate fresh fruit and veg. Then as I got more lost in my inner world, I must have realised that that wasn't helping and I remember forcing myself to eat meat and chew it to try and bring myself back...

I feel like both of my episodes were related to kundalini awakening and I believe the second episode happened because the first one was stopped in its tracks so suddenly by the strong dose of meds that I was put on... I'm hoping that by doing work with the therapist I am seeing now, that the energy will not need to express itself in the same way again... He has said this is what we are aiming for...

When you say you "should have been more careful" - I hope you are not blaming yourself? There are many, many people who spends most of their waking hours on their spiritual practice and who never suffer anything like this... whereas there are others who are not on a spiritual path as such who experience a spontaneous awakening just from childbirth. I originally thought perhaps I'd brought it on... I did a bit of chakra cleansing work too but the main thing I did is what I call "emotional releasing" - I used to listen to music and let emotions I'd been holding on to come to the surface... sometimes I'd be crying without knowing why but I was just letting go of something... other times images would rise to the surface... I did this over a period of about 1.5 years... as well as meditation relating to the birth... reading many spiritual books... attempting to connect with my unborn baby... keeping a dream journal... Perhaps these things contributed to my episode, perhaps they didn't but I do feel that the "stuff" that came up in both episodes needed (needs) to be faced and healed so... if it didn't happen then it would have come up at some point ;)

I also felt like I didn't have an ego for a period/periods during both episodes and it was odd, but interesting. For a long time afterwards I lost a sense of self but that, for me, was different. It was less related to ego and more a "who the f*ck am I now that my life has changed so much?" It was utterly horrible and I'm only now beginning to get some sense back of who I am and my daughter is nearly 2.5. However, I think it would have happened more quickly if I'd gone to therapy earlier and had others who I could talk to about this being a spiritual experience.

The way things went, I lost faith in my instincts/intuition... almost believed this was something entirely mental and thought that what I experienced was meaningless... was afraid to go back to spirituality and therefore felt completely alone in this life with no "higher" support... and consequently felt suicidal for many, many months (both times).

My therapist now (I have had two - both are amazing) is also a Mindfulness teacher and has experience with Buddhism, Sufism etc... He is the one who mentioned "spiritual emergence" to me - by the way, have you read Catherine Lucas' book, "In Case of Spiritual Emergency"? She talks about the depression side of things in there too... You might like it...

How are you feeling now? I read one of your other posts the other day... I think you mentioned something about not feeling connected to your daughter? I didn't get any pleasure from mine until she was about 5 months, and then it was only glimmers... I felt some true joy from our interactions when she was about 14.5 months because she started bringing me books and asking (squeaking!) for me to read to her! It's got better the older she gets... but to be honest, even if I hadn't had PP I think that would have happened to me (depression and a lack of connection). There are women who just don't like the baby stage and I think I'm one of them. I'm not ashamed of it, although I wish I had loved it - it would have been so much easier! For me, one of the reasons for that (hating the baby stage) is that I'm an introvert and dealing with a baby wrenched me away from my inner world (where I recharge) for most, if not all of the time. I felt like a part of me had died (it probably did!) However, as Maya gets older, I love watching her, catching glimpses of the way she thinks, her sense of humour, the interaction between us (rather than he just being a small thing that is cute but entirely dependent and not capable of reaching back out and connecting with me)...

Some days, the only thing that kept me moving forward was reminding myself that she would grow, that I wouldn't always have a baby... but often I would feel jealous of everyone that didn't have a baby! I hated how much my life had changed... I felt lost... like I didn't know myself... Plus I didn't feel capable of acting how other women seem to with their babies... I didn't feel good enough at parenting (another reason why I hated it - if you're not good at other things you can just quit!)

Anyway, this is a long ramble now so I'm going to go and wash my mop before Maya wakes up! But... feel free to message me any time about any aspect of how you're feeling ("spiritual" or otherwise) as I know how much relief it brought me to know I wasn't the only one when I was/am feeling like sh*t.

Lots of love!

P.S. Susan Jeffer book "I'm Okay, You're a Brat" is a godsend if you don't feel like a "natural" mother/wish you felt differently about your child...

I am currently off meds ( lithium) due to pregnancy. No relapse despite stressful lifestyle. This is the third time I was off meds for pregnancy with no relapse. Had severe pp 8yrs ago. That was due to no epidural and no meds after.

I believe meds are v imp for post natal period. Everyone is different it's v tricky. I have seen I can cope with stress without relapsing but others would. I am more sensitive to labour pains . Others may not be . You know urself best. Meds have bad side effects. So definitely worth investigating. I am hopeful one day to be off completely. I have bi polar 1. It may be different for others with different diagnoses or even those with bi polar 1. Some may be v sensitive to medication changes. Need expert advice. But previously I have been on sodium valproate and lithium and last couple of yrs just lithium. It makes me wonder why I was on two meds for so long and now ok technically on one when now life is much more difficult. There is a reluctance to change lower meds from a professional point of view. Thanks for asking this much needed and important question.

Hi peppermint pig

I am also averse to medication, I think firstly because it meant that I could not feed my baby myself and secondly my experience was that my psychotic thoughts increased. Right from the start I begged them not to give me any drugs at all.. i desperately wanted to feed my baby.

As with the spirituality aspect. I too have often asked myself. Was my experience simply a diagnosis of a hormonal imbalance and that my mind was ill or did I have a spiritual awakening??

I was not at all spiritual prior to my first episode, I have had 3. However from the beginning of my 'psychosis I definately had a sense that something bigger was trying to tell me something or come through me so to speak.

At one point, I believed that I was GOD and that I had to bless every person in the world. And during my experience I saw things that no one else could and I just wonder if it was because I was able to tap into something beyond the norm. When I looked at the Sun, it was 5 times brighter than I had ever seen it before, the beauty in nature was so intense to me that it made me cry. I remember being in complete and utter see of all the beauty I could see!!!

I would love to chat more with You, I would be very interested in a therapist who could be a witness alongside as you are having that sounds amazing!!

Message me if you would like to chat.

Cheryl x

I had a psychotic episode in university though I did not know it was that at the time. It was brought on by what I know was a forced form of awareness before I was ready. It was extremely spiritual and extremely bizarre, but needed. Feel free to PM me for more details. I did not take medication and recovered spontaneously and rapidly in a pretty intense way. In postpartum I had to be medicated, it felt like a completely different experience.

I think a diet high in omega 3 with omega 3 supplements ie flaxseed oil capsules and fish oil capsules is a way to stay well but also to have a supply of olanzapine in case of mania

bipolar disorder is to do with chemicals in the brain and in my opinion no amount of spirituality will cut it if mania occurs

- mania is so destructive for everyone and olanzapine stops it like magic - it stops it by shutting down the dopamine receptors - dopamine or rather an inability to deal with dopamine is the cause of bipolar

Olanzapine in my opinion should be taken to stop mania but not taken every day - only when needed - when mania occurs

Hi I haven't read all the comments but have you heard of bio identical progesterone, I gave used it to successfully prevent ppp after babies 2 and 3. Their is quite a bit of reading by Dr. Katharina Dalton including an book on her treatment for postnatal illness

Ellie_at_APP profile image

Hi all,

I just thought it would be helpful to let you know what APP's clinical advisers would say about the progesterone therapy in relation to preventing PP:

"Although hormonal changes may well play a role in PP we need more research to understand this better.

At present, there is not enough evidence that treatment with oestrogen is beneficial in PP or for maintenance of mood stability after PP. Katharina Dalton advocated the use of progesterone therapy for prevention of postpartum mood episodes a number of decades ago, and reported a number of positive case studies.

However, there is still a lack of good evidence for it helping and there may in fact be a higher risk of depression in the group treated with progesterone. There haven’t been any studies examining progesterone and PP specifically. The key clinical guidelines in the UK and around the world (e.g. NICE, SIGN) do not recommend oestrogen or progesterone in the treatment or prevention of PP. More research in this area would be very helpful."

Jas15 profile image

Hi Peppermint Pig

Hello - hope you are ok today 🙂I just wanted to add about my experience ....

I had progesterone therapy in 2000 under the guidance of Katharina Dalton to prevent PP but I was also given Lithium to take straight after the birth and sacrificed breast feeding as a result .... I was very fortunate to only have a brief psychotic episode and did not need to use the bed reserved for me in the MBU, sleep deprivation was a major factor and something that got overlooked as a possible trigger ....I see from Ellie's post that more research needs to be done in this area but just wanted to share my experience with you - hope it helps - very best wishes

Jas xx

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