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Action on Postpartum Psychosis
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Why does it feel like doctors have no idea what is going on, ever?

I don't understand why I cannot get a straight answer as to what happened to me. How is there not more funding for further research into this phenomenon? It is unbelievable to me that not only do the doctors make it difficult to be admitted as an inpatient, but there is a general lack of resources, everywhere, for mothers who experience severe mental health episodes. It legitimately makes me sick to my stomach. I was turned away from the psych emergency FIVE...yes, five times, before they finally deemed me "severe" enough to be admitted. Upon being accepted as an inpatient, most of the others in the waiting room were teenagers, chatting, laughing and playing games. I was the only one in the back corner completely hysterical and in a real emergency.

SSRIs made it all worse for me, I told them after a month that Prozac was making it so unbearable I felt like I was going to drop dead any second and they scoffed at me, told me to do as I was told and keep taking it. This nearly got me killed. No one would listen to me, no one even wanted to help me. I was continuously sent home to die. Five times.

Upon full recovery, I sought to find answers as to what happened to my brain. Some said it was postpartum psychosis. Others said it was severe depression. So which was it? Why can no one give me a straight answer? No one seemed to have any answers, and had absolutely no idea what I had, and yet I was expected to put full trust in these people who were treating me, who at every turn, pointed me in the wrong direction and left me to my own devices.

What kind of a society is this? How is this acceptable treatment? I am repulsed by it. And sickened.

Has anyone here had postpartum psychosis without hallucenations?

I had: severe agitation, restlessness, feeling like I was in another reality (derealization), extreme internal anxiety, inability to sit still, insomnia, constant vomiting, pacing in circles wonder what the hell was happening to me.

Is this psychosis? Or "agitated depression" ?

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Hi OrionRipley,

It sounds like you've had a really tough time and the support wasn't forthcoming when you needed it.

I've got friends who're medics and when i was at uni i had lectures on mental health disorders and i think the reason that diagnosis can be hard to come by with MH disorders is that the distinctions really are quite arbitrary. The illnesses are usually described on the basis of the symptoms you present with, which can mean that people's diagnoses can change as their symptoms change. Have you had a chance to look back at your notes from when you were ill? It's also possible to use APP's second opinion service with prof Ian Jones who could read your notes and give his impressions.

However reading notes can be quite upsetting and i don't know how long you've been recovered but you'll know yourself when you're ready for something like that.

It sounds to me like the only psychotic symptom you described was "derealisation" so i can imagine doctors disagreeing about when that crosses over from being agitated depression to being psychosis. I had a lot of the symptoms you describe but i was also saying i could feel God in the room, read people's thoughts and that i was going to write a PhD about midwifery (I'm not a midwife!) which are delusional symptoms so where it crossed over to psychosis. The next day i was a bit manic too and singing at the top of my lungs (and i do a lot of singing so that's pretty loud!) in the cafeteria of the general psych ward.

It's so scary to be so seriously ill but i hope you're making a recovery now. How long ago did you become unwell?

Best wishes

Hazello

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I’m curious about what you wrote: “also possible to use APP's second opinion service with prof Ian Jones who could read your notes and give his impressions.“

Can you tell me more.

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If you're uk based your GP can refer you for a second opinion from prof Ian Jones based in Cardiff and he'll speak to you via Skype if need be. There are details on the APP website.

Hazello

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Oh! Good to know, thank you!!!

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I’m based in Canada. Is there anyone here you could refer me to? I can’t find answers anywhere.

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Hi Arae007

I wonder if you have heard of Postpartum Support International at postpartum.net? If you go to the page under "Get Help' you will find a list of countries, Canada being one of them, where you should be able to find support co-ordinators to help you. Also the 'Get Help' link will take you to 'Postpartum Psychosis Help'. I hope you can find answers there. Take care.

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Thank you!

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Hello OrionRipley

Good to 'meet' you here again. I think it's very hard to understand they whys and wherefores of what happened during our very traumatic experiences. I had PP twice many years ago, with delusions and hallucinations. I was also hit with what seemed like a never ending depression after my second PP We have all had a mixture of symptoms and different routes to recovery.

Are you in the UK? Do you have access to your medical notes which might give a diagnosis? I didn't know what had happened to me until years later when I met Prof Ian Jones of APP and some of his team. After later reading my notes he was able to confirm that I had suffered PP twice. In a way it was a relief to finally know as I had carried unfounded guilt for years. Some years later I was able to read my notes pertaining to my PP which was quite upsetting at the time as I didn't recognise myself. I can remember some events quite vividly but wasn't communicating at all for a while. My husband and family put their full trust in the NHS and I'm so glad for the treatment I received to be able to fully recover twice.

I don't know whether you have seen the frequently asked questions page at app-network.org/what-is-pp/... which might give you some answers. There is also information on the page about symptoms which might compare to how you felt at the time.

I think you need to be sure that you feel ready to read your notes or hear about such a difficult time in your life. Someone once said on the forum that what she didn't remember wasn't worth remembering. I think this is a a good way to protect yourself and move on.

We are the lucky ones who have recovered in spite of everything we have been through. So my advice would be not to dig too deeply and be happy with the life and memories you will make from here on in. We are all here to talk. Take care.

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Your experience sounds so similar to mine after my now 3 year old was born. I lost my mind, I knew I had. Was put under the crisis team, they basically called me a drama queen and told me to go home. I tried to hang myself because I had dead people telling me to do it but apparently I was just imagining it and that wasn’t ‘real’ hallucinations. I was basically told to pee off when I begged for help. I was diagnosed with a lot of crap along the way. None of which I agreed with. After I recovered I spent a lot of time researching and I now believe I had ppp then. As I recovered after about 2 years and felt back to normal. After this pregnancy I have got ill again but now they just say they won’t give me a ‘diagsnosis’ as they know I don’t believe a word they say. The care has been a lot better this time round and I did go in an mbu. But I agree these proffesinals are an absolute joke! They don’t listen. They all make guesses about your symptoms. I have found one person will make notes then the rest of them just agree with the notes all down the line. It’s all bullshit. Looking back I’m really wondering how they thought I wasn’t psychotic when I was seeing dead people walking around, hearing them talk to me, tried to kill myself afew times because they were telling me too, couldn’t think straight, couldn’t look after myself or my baby. I literally had to stay in my bedroom away from everyone for days on end. I believe just do some research and go with whatever you believe. Don’t put trust in others to tell you how you feel or what you think is true. You don’t need anyone telling you what you know. You can do it all without them xx

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Hi OrionRipley

Just to add a little to the other answers, I agree with not digging too much into what happened and focusing on moving forward is true however that is easily said than done. I feel I'm like you and I wanted to have a diagnosis and an answer. However 12 years down the line and having been diagnosed with bipolar because of having 2 episodes of psychosis I can't help but wonder was it bipolar or was it just psychosis and depression?

The lines are grey. You can jump from one label to another but at the end of the day what it matters is you. You have been through hell n back and thinking about what your diagnosis is is just another part of the recovery process.

I agree with the others to reach out for a second opinion just for peace of mind because doctors are human beings and there are good ones n then not so good ones. I also saw Prof Ian Jones and he was excellent. He is very specialised n I would trust him 100%. Just so you know I work in a doctors surgery so I do know what they can be like. Prof Jones could be the answer you are looking for. Good luck xx

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Hi OrionRipley, sorry you’re having such a hard time with this. I don’t know how long you’ve been recovering for, but I totally identify with everything you’re feeling. I was really ill after both my girls, but was never formally diagnosed with PP. With my second daughter, I was treated on a mum and baby unit, so in theory was given an informed diagnosis by experts. And yet somehow the diagnosis of anxiety and depression I received seems incomplete, and has left me with a massive void in my mind, filled with unanswered questions, even nearly two years on. It’s so hard isn’t it, when all you want is closure, and you are left in doubt with a feeling of not really belonging anywhere.

I have been refused a referral to Prof Jones by my rather flippant GP, on the basis that I should listen to the experts and move on, but I think knowing for sure what was wrong would really help going forward. I hope, whatever you decide, that you find the peace you’re looking for, and know that you’re not alone in how you feel.

Take care,

Sal x

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Hello, OrionRipley.

So sorry you went through this. I can just say “amen” to what you are feeling. I also feel disbelief at the system and what it did to me. I am shocked and angered. No one was upfront with my diagnosis either. Just wanted you to know you are not alone , I very much share some of these feelings. The system is broken. Or it was never put in place to begin with.

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So sorry this happened to you. I still feel at a loss as to what happened to me too, no answers. I had a psychosis after my third child in 2004, there was no mother and baby unit for me and as a result was cared for at home. My husband had a breakdown afterwards as a result and our marriage ended a couple of years later. I totally understand your confusion and anger. You definitely had a psychosis, everyone experiences it in different ways. Psychotherapy really helped me to come to terms with what happened and then the knock in effects.

I hope you’re ok and keep reaching out xxx

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Hi orionripley and others on this thread,

it is so sad to hear of what a hard time you have been through, and how you struggled to get the support you needed, despite pleading for help.

We really hope that the new specialist perinatal mental health teams across the whole of England, and the increased mbu beds, will make a difference and will mean people will be able to be supported quicker, and the teams will also raise awareness and training across all different mental health teams.

As others have said diagnosis is a strange thing, and I don’t think people fit neatly into diagnostic boxes often, everyone’s experience is different. In terms of what is pp and what isn’t the faq on our website does include a question about the difference between postpartum psychosis and post natal depression which may help: app-network.org/what-is-pp/...

For me I had very severe, acute psychotic symptoms which came on very quickly within days of my son being born. I was totally out of touch with any reality, believing it was the end of the world, that I’d killed my baby, that I was someone else entirely, among other delusions. It was hugely traumatic yet I was so fortunate to receive support and diagnosis quickly and was in a mother and baby unit within 24 hours and then got good support from an early intervention in psychosis team at home.

And yet it was such a huge trauma and struggle and took a lot of time to recover, so it is so upsetting to hear stories of people who couldn’t get the support they needed , as I know that even with good professional support it was still so hard.

Take care all, and I hope it helps to share experiences , to help you to feel not so alone.

Ellie x

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I agree people come with different opinions and it’s a gray area sometimes. I was diagnosed as bi polar and with a psychotic episode by two psychiatrists. Although I was admitted to the psych ward voluntarily I don’t think they took me seriously as I was released after two days. I kept telling people to not trust me with the baby because of my intrusive thoughts but my boyfriend and every else did for the most part so I just had to grit my teeth and tell myself and my child look we can do this nothing bad is going to happen. The lithium and abilify didn’t do much. I saw a third psychiatrist who disagreed with the other diagnosis and said it was severe postpartum anxiety and ocd. I was taken off the other meds and given Zoloft. That helped and I recovered fully in a month or so. I don’t know if you have options for drs in the Uk- i just search around until I find a dr I like. Drs are human. Some make mistakes and some aren’t nice.

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My sister had ppp and developed bipolar disorder

I believe that pp has to to with hormones and / or the balance of serotonin and dopamine

People with bipolar disorder ( and scizophrenia ) get an overload of dopamine which can be fixed by serotonin supplements such as 5htp or big pharmas version of it ie olanzapine

In your case I think it is hormonal and could be fixed by replacing the the hormones - progesterone diminishes after giving birth maybe progesterone is the answer

Trouble is NHS trusts get financial incentives from big pharma who are very powerful and controlling and put profits and control above our health

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Yes exactly. I too believe it has something to do with the dopamine system. Anything that acted directly on serotonin made me worse, the things that controlled dopamine ultimately stopped the entire thing dead in its tracks. I was diagnosed as bipolar but I have never had bipolar depressions in my entire life. I have only ever had anxiety. It has been almost 2 years since my episode and I have not had another episode of either depression or mania. So I really do think hormones play an enormous role in this.

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Thank you all for your replies, it is truly eye opening.

I know doctors are "only human", but at the same time, we entrust our lives to them and to be treated as if our suffering is inside our imagination is a completely inhumane and unethical thing for a doctor to do.

My treatment was horrible. My psychiatrist, when I asked "will I ever be ok again?," told me, "I don't know, Im not a fortune teller". That night her words almost lead me to suicide.

At the peak of my illness the symptoms were so severe I felt like I was trapped in some kind of horrendous nightmare and so agitated I wanted to die. My GP simply said, "everyone in this office can tell you're anxious. You have to try harder. She is your daughter you know, and all I see is your poor overworked husband doing all the work".

On my fourth visit to the hospital, I told them Prozac was making the symptoms so unimaginably unbearable I felt like I was being legitimately tortured...only to be scoffed at, told to go home, and upon leaving the doctor said to me, "I dont know what you expect us to do for you. You have your meds, you keep taking them and wait".

You are never supposed to give an agitated person an SSRI without a mood stabilizer or antipsychotic first. Why is it that I knew this, but four doctors and psychiatrists did not? Why did they willingly let this suffering go on indefinitely, and disregard every single word I was saying, for months, until I finally said enough is enough.

It was only upon being admitted that I found someone who would listen, and even then, he rushed me through what I was saying, and it seemed like he just wanted his day to be over.

We are expected to understand that doctors are only human, yet we are treated in such an inhumane way by them. I have lost all respect for them.

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As for moving on, believe me, the things I had to face and accept during my recovery go beyond what I have said in my previous posts. I have fully recovered and moved on, but I will never accept the way they treated me and I plan on writing a book on the matter to bring attention to this. Something in this world needs to change and fast. Just recently someone I knew from high school went to the ER for help with a depression. They sent her home. She committed suicide that night, because they made her feel like it wasn't real enough to be admitted. They are "only human" but so are we. So is everyone. This sort of thing is inexcusable to me. And unforgivable. Knowing what happened on a biochemical level is important to me, as with that knowledge you know what you are working on in order to prevent future episodes, if that may occur. Without knowing, it is a feeling of being lost. What do you do when the people who are meant to help you and provide answers are the ones who shoo you out of the door and tell you to just forget about it?

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Dear OrionRipley

I'm so sorry to hear that you have had such awful experiences, and a lack of empathy and kindness, from some professionals you encountered. It is awful to hear what different people said to you, how they belittled your distress, and I'm not surprised you are feel so angry, upset, and traumatised by it. It is hard to know what to say, just that I hope that you can get support you need to come to terms with it, and perhaps turn it into something positive (as you say, writing a book etc). I wonder if you may find any organisations / groups in your local area where you can get support from others who have been through it, as you are doing on here. From what you wrote I don't know if you are in America and whether you have found the organisation Postpartum Support International? postpartum.net/

It is really upsetting to hear of your experience, as experiencing PP was such a trauma for me, and I experienced nothing but swift action, kindness, and empathy from all the professionals I encountered - from midwives who came down to be with me in A&E and the general nurses, to the MBU staff while I was there, and also the staff from the early intervention team. And experiencing PP was still so traumatic, so hard to recover from, and that was with empathic and kind care...

I have met a lot of professionals who work in perinatal mental health specialist teams through my role with APP, and also others (midwives, health visitors etc) who are so passionate, and empathic, but I know this isn't everyone, as your experience shows. There are now specialist perinatal mental health teams and more MBU beds across England, and I really hope this will increase awareness, empathy, and understanding across all services coming into contact with new mum's who may be struggling. From your post it sounds like you may be in USA (you mentioned the 'ER')? I know that here in the UK things are much more advanced than other countries. More always needs to be done...

Take care, and I hope it helps just to get some support and understanding on here from others who have 'been there'.

Ellie

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