Action on Postpartum Psychosis
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perimenopausal psychosis

I had post natal psychosis 16 yrs ago, my son is now 16 and at college, he is doing well. I think maybe I have perimenopause psychosis, anyone on here had that? I am on a lot of medication including zopiclone (which does nothing), aripiprazole etc. Psych wants to increase my anti psychotic but I think this is not the answer, 16 yrs ago I was lucky to get bed in Priory mother and baby unit.

Psych and CPN both do not agree with me, am feeling down that I cannot get them to listen to me.

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Hello Sylfran

Welcome to the forum where you will find lots of support and advice. It's good to hear your son is doing well, you must be very proud.

I'm sorry to hear you think you might have perimenopausal psychosis but that your psychiatrist and CPN do not agree. There have been a few posts on the forum about this, one being from Rose89 entitled "Perimenopause and repeat episodes". You can search for this in the box on the right of this page or one of the other mums might give you the link. There are a few replies with good links, one being a mum's personal experience, so I hope this might be helpful to you.

Please take care of yourself and perhaps talk to your GP if you are feeling down so that he can listen to your concerns. We are all here to support you.

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Hello Sylfran, welcome to the forum. Sorry to hear that things are tough at the moment. It can be difficult sometimes to get the right support and I hope that you are able to speak to the health professionals and get your viewpoint and wishes across. There is limited research in terms of the risk of psychosis around the menopause after PP; this link may help more, around "am I likely to have an episode of psychiatric illness at other times": app-network.org/what-is-pp/...

Also the post that Lilybeth mentions is here: healthunlocked.com/app-netw...

I know it's something I will be thinking of before too long, as I experienced PP after my eldest child was born, almost 9 years ago now. Perhaps you could consider showing your psychiatrist information from APP? I also wanted to let you know about the Second Opinion service, offered by Prof Ian Jones, the link is here: app-network.org/what-is-pp/...

Prof Ian Jones is a world-leading expert in mood disorders and referrals are free, via your GP or mental health team if you are in the U.K. I know it can be a tricky balance when you already have a psychiatrist involved, but if they (& you!) feel some more specialist advice would help, this could be worth considering. I have had a consultation with him, via Skype, when I was expecting my second child, in the absence of specialist services where I live, having been discharged from the local generic team. I felt so assured that someone actually understood and could give me the right information (& luckily I remained well and have since).

I hope that things get easier for you soon, it sounds like you have a wonderful 16 year old son too. Where does the time go?! Take care, and please feel free to ask any more questions, xx

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Hi sylfran my mum had post partum psychosis in 1979 and then had menopausal psychosis in 2000. It was definitely menopausal psychosis. I don’t know why professionals doubt it exists. Hope that helps and you should seek further medical advice and support

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Hi Sylfran my Mums mental health suffered hugely during menopause as it it did throughout her whole life due to her hormones. I’m starting to think the hormone swings we have are undoubtedly the primary cause of everything mental health wise for a lot of woman. I have inherited the sensitivity to hormone changes from my Mum. Had Post natal psychosis during the whole time I was breast feeding. I hope you feel better soon. You are not alone in feeling this way. I wish it was more researched and that their was more help for you and for my Mum too. Take it easy on yourself and don’t take too much on. Hope you feel better xoxo

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Hi Sylfran,

I'm sorry that you're struggling and you don't feel you're getting the right treatment / medication. I hope the links and information is helpful above. There definitely does seem to be evidence of links between postnatal psychosis, and then having an episode of psychosis during perimenopause. As others have said more research is being done on this.

I don't know if you live in the UK? If you do, you could ask your mental health team to refer you to the second opinion psychiatry service, with Dr Ian Jones, who specialises in PP and bipolar / mood disorder, and is a leading academic and clinician in this area. If you don't live near Cardiff, where he is based, he can do consultations over skype. It wouldn't be so much about asking for a second opinion but rather a specialist opinion. The link is here: app-network.org/what-is-pp/...

I hope this may be helpful.

Take care,

Ellie

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Hi Sylfran

Welcome to the forum ... I hope you find the support on here useful... I suffered with PP twice about 20 years ago, I have been diagnosed with a 'hormone related mood disorder'; I had been told that psychosis was related solely to childbirth in my case, so I thought I would never have psychosis again providing I had no morechildren, unfortunately though 2 years ago I did have a psychotic episode, when I was peri menopausal, though triggered by the sudden death of a close relative .

What I have learnt since is that around that time I had been pushing myself too much, putting myself under enormous pressure, coping with family disputes , all the time believing that my mental health did not need 'protecting' as I measured my mental state against that of the previous psychoses and thought I could just cope no Matter how much strain, stress, pressure I was under , I guess I thought I was invincible, strong and totally resilient, how wrong I was! ......since my psychotic episode 2 yrs ago I have worked incredibly hard to protect myself, practising self care, taking the support from family and friends rather than thinking I can just keep on struggling and fighting .... what this means in a practical sense is loads of rest when to, I have time alone when I'm feeling overwhelmed , I practice yoga, swim, plan pleasant activities, try not to worry about the unimportant things in life, learn to accept that some things are what they are ..... I know many other mums on here May have young children and these ideas would be impractical and I guess it's about finding your own ways through these crisis times.... I hope my words may helping inspire others, I made a very good recovery from my recent episode by addressing these imbalances and learning to adapt my way of life, I try not view my vulnerability to mental ill health as a weakness but to really focus on how I can take the best care of my self (in the same way as any health condition like Diabetes, kidney failure, heart problems .... Sylfran , take care of yourself and access as much professional help as you can, you will get through this - Jas xx

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In 2017, I discovered I was perimenopausal. I began having changes back in 2014 and was only ever treated with psych medications. But perimenopause was not discovered until routine lab tests were done by gynecologist when I requested them in 2017. I am not a clinician but early research by Dr. Hamilton showed the role estrogen played in psychosis in moms so it makes sense that perimenopause/menopause is a transitional time.

I am in USA and getting to provider that has been helping to find root cause of my symptoms just happened in 2017. My son is 22 now. I encourage you to get hormones and thyroid checked, etc. Back in June, it was discovered that I had urinary tract infection which can cause psychosis when untreated. The antibiotic caused even more problems for me but thankfully I had just seen my gyn for annual appointment and asked to have hormones checked. His prescribing hormones helped me immediately. Now I am working on getting more complete holistic evaluation. In the USA, it has to be initiated by the patient and paid for out of pocket. Hopefully you can get with right providers easier in your location.

Women's bodies are different and science does not always address that fact. Be your own best advocate...despite what you may feel and what the system may make you think, you should not feel guilty and with accurate help you will get better.

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Thanks for so many replies, I see psych today , will ask for referral to Prof Jones Cardiff and also gynaecologist for hormone checks, have not had hormone levels checked, must probably argue with psych about being on so much medication.

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Hi Sylfran,

Sorry you are having a hard time at the moment. I went to Cardiff recently to have the second opinion and it was well worth the journey. It was incredibly helpful and looked at me as a whole. I can’t recommend this service enough. I didn’t have to wait long for the appointment either which is always a bonus! Good luck with it all xx

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Hello Sylfran

I hope the appointment with the psychiatrist went well, your medication was reviewed and you felt reassured. Thinking of you .... take care.

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Hi, thanks for messages, psychiatrist still wants to increase my anti psychotic, which I don't want to do, she did not listen really so I was not brave enough to ask for second opinion in Cardiff, but I did talk about my hormone levels, and I did go to GP to get hormone levels checked, will take a while to get results, I really need to get courage up to discuss second opinion idea , its not easy..

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Hello dearest Sylfran,

pleased to meet you here, - sorry for not responding, but I just have been away on holiday. I found your case and the response of support by all these amazing mums quite moving as it applies to my experience.

I am having my second consultation with Prof. Ian Jones in September. My first one was in March via Skype. It was very therapeutic for my partner and I.

I assume that you are in the UK. Treatment and care does vary regionally. My experience when sectioned was horrific. However, the support throughout my path of recovery by Somerset Partnership was much improved in comparison to the practise in the mixed gender psychiatric unit, which was 'under refurbishment' only months later in 2011.

Despite my mental health issues I always knew I have had choices in how I want to develop my toolbox and reassure the stability of my overall well being. Even though my brain is occasionally on a fog mission or busy mind racing it is still in great working order.

This year I have been diagnosed with Bi-Polar 1 and I am very grateful for Ian's support, but also APP...I felt very much on my own in the first 5yrs after PPP and struggled with extreme Insomnia, anxiety issues, mind racing, psychotic episodes such as ongoing bell ringing...in addition I lost my father and mum in law.

I guess I am opening up to you, because I believe the choice is yours, - a second opinion has been vital in order to map out further progression of my kind of life style. I am making sense of my own world and now understand why my life always has been so adventurous :-)

I am not looking back, no regrets or guilty feeling, sometimes I am just poorly with a chronical illness. Pleased, somebody figured it out. Ian is undoubtedly in my eyes not only a great humanist, but a leading expert in his field.

You can get a referral via your GP, I did not pursue this with the local community mental health team, but asked my doctor.

Look after yourself,

:-)

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Hello Sylfran

I can understand how you might be apprehensive about asking for a referral to Prof Jones for a second opinion. Perhaps it might be easier if you spoke to your psychiatrist's secretary to let her know that at your next appointment you would like to discuss this option? It may be that when she mentions it to your psychiatrist he might be willing to refer you sooner.

I had the good fortune to meet Prof Jones years ago when he confirmed my PP diagnoses. He was very caring and compassionate and his advice and support were priceless. I hope you can be referred for your own peace of mind. Take care.

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Is there anyway your GP can refer you? I’m under Cmht but my GP did my referral. I showed her the link from APP about second opinion which showed there was no charge and she happily did it. I know I’ve said it already but it was well worth going. Good luck

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Hi Sylfran - I know your history suggests that you might have perimenopause psychosis but may be you have empty nest syndrome with your son at college. Coping with the transition of a son to adulthood is difficult. May be you should have a few other tests to check your general health. Does your practice do your hormone level tests for the menopause and are their other problems with menopause such as migraines heavy periods?

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Hi, thanks for reply, I am getting my hormone level checked by my GP, who is listening to me more than my psychiatrist (she does not listen, she is still very keen on increasing anti psychotic),I had a womb operation a while ago , so I do not get periods, my son starts college Wednesday, it is indeed a huge change for me, as I only have one child , it will be very strange , but I am excited for him,

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It will be a help to get your hormone levels back to see if hormone replacement therapy is necessary or if you have an oestrogen progesterone imbalance. I had the dreaded op done too, so your history reflects hormone imbalance with the mental health problems.

It is exciting when they first start college - make new friends- and start dating. It's a bit of surprise when they bring a girl friend home and you suddenly realise your child has grown up over night! Hope you find the right answer as GPs can be very helpful and down to earth.

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Hi Sylfran, it's good to hear your GP is being supportive and you feel listened to. Having this positive feeling with a health professional is really key isn't it, hopefully any test results will also help with talking to your psychiatrist about your wishes too.

I hope you are enjoying the preparation for college with your son - if he still likes to be around adults (I hear about the dreaded teen years but am not there as yet)... I am slightly dreading my kids getting older in one way, but I know they will always be there, and me for them too - our relationship, as with all, will just evolve. Nothing stays the same, change is ongoing in all things I guess. My youngest starts school today too and I feel the same; excited for him, but it's a different feel in the house for sure.

I hope you get some answers soon, all the best, xx

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Hello Sylfran

I have menstrual psychosis and it runs in the family..never found a dr that would help myself or the youngsters in the family. I am 50 I have never had depression just repeated psychotic episodes with my menstrual cycle. I treat them with natural progesterone I found anti psychotics anti depressants,anti epileptic drugs and contraceptives made me worse and also caused me a great deal of physical pain. I walked away from the medical profession years ago. Because they refuse to acknowledge that menstrual psychosis is a hormonal issue and only want to treat with drugs that make it worse read through the forums on menstrual psychosis there are a few good links posted by other women in the same boat on using natural progesterone. One day I hope proper research will be done as to why natural progesterone works on a small minority of women this can not be done when dr only want to call it bipolar/ schizophrenia it just drives family’s like ours underground.

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What I am trying to tell you is go with your gut feelings if you know it’s hormonal see a hormonal specialist. I lost the best years of my life to drugs that at best did not work and at times extended my episodes.

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H Sylfran,

I do hope that you are doing OK, and getting the support you need. It's good to hear you have a supportive GP.

I guess there is no one treatment or support, one thing may work for one person and not another. I do hope that you may be able to get some specialist advice and support from Dr Ian Jones the second opinion psychiatry service, if this is something you feel would be helpful.

Do take care

Ellie

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Hi Sylfran, just reading through these posts and I agree with Dewlitt

....I also think that there needs to be more research to explore the complexities of hormones and the effect and impact they have on mental health, there has been a definite lack of connection/ agreement from my GPs, mental health professionals over the years around my hormones (eg monthly, post natal and menopause), I have always suffered so badly at these times, I was given a

diagnosis of ‘Hormone Related Mood Disorder’ by a private psychiatrist around 6 years ago and he recommended HRT around peri-menopause, but I’m not sure if this diagnosis is recognised widely or how many other women are given this diagnosis, it’s all very confusing as I was later diagnosed with Bi Polar after a menopausal psychotic episode......I appreciate we’re all different, so it’s hard to generalise, I hope this helps, take care x

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