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Alternatives for psychotic outbreaks

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I actually feel bad that I didn't write here earlier and see if anyone knows of any alternatives to what is going on.

 

At the age of 37, 8 months ago my cousin suddenly started suffering from delusions. It happened 18 months after she gave birth to her second child. She is convinced that she is infected with HIV and syphilis and that she has passed on these illnesses to her children and husband and that they are all dying. It started as worrying over the baby boy who is actually in perfect health but since she was born she was worried that there might be something wrong with him.

 

In her mind it all makes 'perfect sense' because her first boyfriend of 20 years ago had something to do with drugs so of course she got infected but wasn't aware of it till now. She even went to have the tests done and when they all came negative she displayed paranoid behaviour: that people from her previous company have connections in all hospitals and they influenced them to forge the tests.

 

I wasn't around when it all started but of course she became very agitated and of course she was taken to a psychiatrist who put her on some heavy duty anti psychotics. She has been drugged with all possible anti psychotics since January. At times she would get calmer but she continues to believe they are all ill and dying. For the last 2 months she has been at hospital where they continued experimenting with heavy drugs. At the moment she is taking sertindole (I googled it and found that it was banned in the US and Australia and for a while in Europe too), clozapine and akineton (obviously for side effects or could it be that she already developed tardive dyskinesia?

 

It is beyond sad. I'm going to talk to my uncle but the problem is I don't have any alternatives :(

 

At one point she mentioned ending it all and also relieving children of their suffering.

 

JanCarol wrote something beautiful for LexFree yesterday but any more ideas would be very welcome.

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Hi Bubble--  I'm so sorry to hear about what your cousin is going through and how it must make your feel. I have heard similar stories once or twice in the past and it turned out to be a variation of PPD.  I don't remember how it was treated however. I tend to recall that, even though the acute phase was very bad it did clear over a lot of time. 

 

((((((((((((((((((HUGS TO BOTH)))))))))))))))))))))

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Thanks a lot Brass! It means a lot.

 

It's really beyond sad to see a person you've known all your life being in such an agony and not being to help. Just watching her being drugged heavily and knowing what those drugs do to you...

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Oh Bubble, even then - "PPD" has so many causes.

 

Nutritional deficiencies come to mind first, because of the Post Partum nature of this.  Our doctors are not very good at nutritionally supporting pregnancy.  Then, there is the emotional side - was she supported through the pregnancy?  Baby wanted by all?

 

This is a "late episode" for intrusive, "delusional" (I hate that word) thinking.  Normally, it happens in late youth, early adulthood.  That it waited until her 30's makes me wonder about the whole trauma.

 

"Europe" is a big place.  There are some cutting edge "Spiritual Emergency" things going on in Europe - like the Open Dialogue in Finland.  There is now a spreading use of this practice throughout Europe (but may or may not be close to your cousin):

 

http://www.opendialogicalpractices.eu/ - click around that site, it looks like it is available in Belgium and Czech Republic, and maybe more places now, as they are holding annual seminars trying to spread the practice.

 

Will Hall has a list of resources, here:  http://willhall.net/opendialogue/

 

His own story is a wealth of encouragement:

http://www.power2u.org/articles/recovery/recovery_stories/will_hall.html

(and he is a psychotherapist who does counseling by Skype!)

 

The other key phrase is "Spiritual Emergence" to describe those non-consensual states, where beliefs are not affirmed in the reality that everyone agrees to - but they are no less real to the person experiencing them:

http://spiritualemergence.info/international-transpersonal-links-for-help/

 

One more place where alternate reality gets support in the real world is Hearing Voices networks, which started with Eleanor Longden in the UK:  Eleanor Longden - The Voices In My Head

 

It is now available around Europe - they had a huge conference recently in the Netherlands, and founded "Intervoice."

http://www.intervoiceonline.org/support-recovery

 

The world is crazy.  Zika and other pandemics are promising to be a problem for humanity - her fears are based in very real fear.  They are just focused on things that other people cannot confirm for her.

 

And what about the children?  Is she now cut off from the children?  Does she get support in raising them?

 

In New Zealand, there is a retreat for Mothers.   KarenB knows more (I don't know that it is available anywhere else) - a place where you can go and retreat for a week or two and be pampered and cared for, like a respite care for Moms.

 

Lastly, there is a group in the Netherlands which is pursuing the line of thought that psychosis, and schizophrenia are non-existent:

https://www.schizofreniebestaatniet.nl/schizophrenia-does-it-exist-or-not/

 

Their definitions of the "psychotic" experience are very useful and challenging.

 

This list would not be complete without Phil Borges excellent TED talk:

Phil Borges TED - Psychosis or Spiritual Awakening?

 

and this - an excellent view from the inside of what a "Breakdown" really may be (an intense sensitivity and perception of the world that doesn't match outside expectations:

It's not a Breakdown

 

I hope these give you some places to go.  These are things I think about often, even though I feel as helpless as you at times, in the face of "standard treatment" for "non-standard behaviours."

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From a PM to Bubble (my words, with permission):

 

 

It is so hard to help from the outside.  And it's hard to get "inside" when someone's perceptions and emotions are so tangled up.

 

My own sister - drugged to the gills.  All my self-knowledge of "how to survive an intrusive experience" - I am at a loss to transmit it to another.  In fact, my self-knowledge of how to survive it made me impatient with her, and with others.  "I figured this out, why can't you?"

 

When I was there, with her, I could hold her and tell her she was safe, and that the spiders or ice or world falling away could not get her, had I ever hurt her?  Can she trust me?  And be the anchor to hold her through the awful stuff.  But if there were any other influences - girlfriends, doctors, alcohol, drugs, my ability to do this was decreased according to how many, how deep, how emotional these other attachments were.

 

I hope you contacted Shep, too, she is the one channeling from the deep right now.

 

I do believe in hope.

 

I do believe in clarity.

 

I hope you saw this tonight, I posted it somewhere:

 

I do believe that when we are young, we frequently have a thing called a "spiritual emergency."  Some of us are more sensitive, and some of us get drugged for it.

 

As Whitaker says, the ones who get drugged, can process it - but it is later, harder, a new problem when you come out on the other side of the drugs.  Sometimes not for 20 or 30 years after the original emergency.  I think Petunia talks about this in her journey, and GiaK, somewhat, too.

 

The ones who never got drugged, who spend a few months (or a year) of their youth in a confused, unreal, surreal, intrusive intense emotional state - and never get drugged - become productive, creative members of society.  Whitaker writes about the Quakers, just "taking care of the body" until the mind finds its way home.

 

I think that, like with the homeostasis, we have a psychological homeostasis, too - our being is always trying to bring us back into balance.  It's just that "psychosis" is so scary for those around us.  It's hard to be patient with someone who makes no sense to us at all, whose reality doesn't match, and challenges everything we know.  How can I talk about the vampires and the tinfoil, when I don't even believe in them?  How can I even listen to this stuff?  So it becomes hard to wait it out, and family is driven to "do something."

 

It's so hard to convince someone else, too, that there is another way.  I have struggled with this with my therapist (who is pro-Whitaker, but does not see any alternatives to drugs for "florid psychosis"), my psychiatrist (naturally, she thinks the drugs save lives), my sister.  When Gotzsche came to town and spoke, there were psychologist and psychiatrists yelling at them, telling him he was being cruel by denying these poor people their drugs.......these drugs that "save lives....."    :(

 

It's kind of a cutting edge of controversy, to not drug psychosis.  To sedate it instead.  But all the literature points to it. If we could use the barbituates (or even benzos) again, let them sleep for a week to rest, then let them talk for a month about anything - and listen, truly listen.  Then the hooks wouldn't be set for life.

 

I'm sorry for your cousin

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You are just a treasure, you know that? :)

 

I know about Open Dialogue but we are in the Central/East Europe and she and her family don't speak English. But your insights will be extremely helpful and I will share them with her family and her brother who is good at English.

 

The baby was planned and desired by all but she did suffer trauma at her previous company. And actually got pregnant to 'escape' very bad situation at the company. You are very spot on on nutritional issues. Her iron has been low for many years and she has had some other sympotms which might be connected to nutritional defeciences so she really wasn't feeling well and the fact that this ongoing unwellness can really be explained by HIV infection really 'makes sense'. She is very well supported. Her mother and father completely took over the care of the children. She was at home treated outpatiently for 6 months and they both stayed with her and helped her. The problem is that apart from worrying about that they are dying she feels very detached from her kids. When we talk she hardly mentions them, never says she misses them or wants to be with them. It's very unfortunate for them despite having loving grandparents. She is at hospital from Monday morning till Friday afternoon and spends weekends with them. But that can hardly be enough for a 2-year old :(

 

This is the best assessment of her situation we have got so far so thank you so much!

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The first two supplements (besides Fish Oil, Magnesium) I would consider are zinc and niacin (B3).  These seem to be the most "reality inducing" supplements.  As she stabilises, look at B6, B12, and Vitamin D; these are the "energy" vitamins, without which a young mother would feel very drained.  If you are above the 33rd parallel, there's a huge chance that there is a D deficiency, which can lead to a B12 deficiency.

 

As I'm not a naturopath, I cannot recommend amounts.  We have a liquid here in Australia called, "Zinc Test" - if it has a taste, you are getting enough zinc.  The worse it tastes, the more zinc you have (and need to take less). (it has only a mild taste to me, even though my blood tests say my zinc is optimised.)   The Niacin, I just use a conservative amount, though Hoffer recommends up to 12 g per day!  Yes, that's grams.  I take 2g per day.  My B6 (I take 2 forms), if my dreams become "sticky" and nightmarish - a dream of being trapped or tortured, then my sleep paralysis has taken over - and it's time to decrease the B6.  B12, I take until my doctor is happy with my homocysteine.  

 

There is discussion that high niacin doses are damaging to liver.  It is my understanding that if you take niacin.  Not time-released, sustained-release, not niacinomide or any other forms, this is not a problem.  Yes, there is an uncomfortable flush at first, but Hoffer says that this flush is an indicator of deficiency, and will go away as treatment stabilises.

 

There are tests for these things. (avoid electronic "skin resistance" testing, though a good kinesiologist can help)  I'm managed by an Orthomolecular MD, and know more than most Naturopaths here in Oz, so won't pay for one.   I don't know about Eastern Europe but in Western Europe, a Naturopath is a proper medical practitioner, and can run tests to ensure that you are headed the right direction.  My doctor-friend worked with a European-trained Naturopath, and we both wondered what she was doing in the USA, where she became a second-class, second-tier underutilized practitioner* (I think she moved for love).  Since you're not dealing with "withdrawal" yet - you're still in "nutritional support," this is a conservative, but possibly effective plan. Just avoid the "detox" scenario (as you probably know!). 

 

*this is the status of Naturopath here in Australia, as well.  They are a dime a dozen here.

 

In her case, too, with the pregnancy, when you look into iron, you must also look at B-vitamins.  Treat her as if she has the methyl-B thing - a proper orthomolecular doc would worry about whether she was under- or over-methylating.  I've found orthomolecular to be helpful, if only a part of the whole picture.  Like GiaK says:  Everything Matters.

 

See if you can find your country and language here:

http://http://orthomolecular.org/resources/pract.shtml

 

In fact, you will probably need a practitioner, because of EU clamping down on "nutrients."  (sheesh - they pass out the drugs like candy, but hyper-regulate Vitamin C!)

http://orthomolecular.org/resources/omns/v09n08.shtml

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Bubble, this is very sad news about your cousin. But it sounds like she's safe and she has the love of her family. Hopefully, she'll stabilize and be able to go home soon. 

 

Is it possible to have her family talk to her doctor about only being on one antipsychotic as opposed to two? That seems reasonable to lower her drug burden, if possible.  As you mentioned, the akineton may just be for side effects and not TD. I googled it and found it is also used to help with akathisia, so it may not be for TD. Please don't go there until you must. 

 

She is very lucky to have you asking these kinds of questions on her behalf. When she is home and stable and ready to withdrawal, you'll be able to provide her with information. You mentioned her brother speaks English. Perhaps he can help her join this site at some point in the future. 

 

As Dr. Martin Harrow's study shows, those who come off these drugs go onto to live beautiful lives. Although the emotional numbing has her disconnected from her children, this is temporary. She'll get past this.

 

Jan listed so many wonderful resources and videos, and I can't think of anything that I can add.

 

Sending healing vibes to you and your cousin. 

 

 

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Bubble, 

 

I don't know if you understand Dutch but there is also a lot of alternative information on the following website : https://psychoseanders.wordpress.com/

 

You say she is in hospital during the week. What kind of hospital is she in? How do they treat her? What does she do all day? How does she relate to other patients?

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Finally!  The film is out!!!!!

 

I don't know how long this link will stay good, so please - see it while you can!

 

https://vimeo.com/201079582/37ea6dd390

 

It is excellent, has a great cast, and good stories throughout, about crisis, healing, peer approaches, and the power of listening.

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Yup.........excellent!!!  MMT's endorsement........ :)   Sunday am viewing.......mountain time, USA.........it's still coming through at 59 minutes.........I got a bit of breaking up around 33 minutes but it cleared.

 

"It is excellent, great cast, and good stories throughout, about crisis, healing, peer approaches, and the power of listening."  J.C. 

 

It's inspiring too.

 

Best,

 

manymoretodays 

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Today......March 22 2017........there is a town hall community discussion available online about alternatives to traditional mental health approaches to psychosis.

 

The links to both the movie and the discussion are available and I wish I knew how to do the links.........it can be found though, on Will Hall's FB page.

 

It's(the discussion portion I believe) at 11 am Pacific time here in the U.S.A...........today!

 

I am registered and going to try and listen in.  Excited!!

 

Best,

 

mmt

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This link expires MARCH 26 - so VIEW IT NOW!!!!

https://vimeo.com/201079582/37ea6dd390

 

 

There is a discussion with some of the GREATS of the Spiritual Emergence movement here:

 

 

Robert Whitaker, Gabor Mate, Will Hall, Dabney Alix, and more.  It's a huge panel that went worldwide just a few days ago - and we are lucky enough to see it anytime (it will not expire like the vimeo link).

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Thanks JanCarol.  Here is to changing the paradigm.........  The discussion offered some great talking points and ideas. 

 

I liked the term "chemically incarcerated".

 

Also Will Hall's statement that "DSM categorizing is a powerful way of not listening to people".

 

......and lol......some of the color was off a bit...........made for interesting watching.   :)  

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