When “psychiatric survivors” think they know it all… http://wp.me/p5nnb-9ZL

[GiaK]

because it's likely everyone here has run into something like this: 

 

original link to post http://wp.me/p5nnb-9ZL

 

 

When “psychiatric survivors” think they know it all…

 

OCTOBER 28

 

I got an email from someone today who thought they knew just how to save me. A psychiatric survivor who had decided that her experience could be generalized to everyone. She’s doing very well…and that is a lovely thing. What is not lovely is writing me with unsolicited advice.  I was familiar with everything she “prescribed” to fix me. Very familiar. If she’d actually read my blog she would have known that. None of it is appropriate for me or many others who’ve found themselves in protracted withdrawal.

 

She assumed that she knew how to fix me. She also spoke to me as though I were an impetuous and stubborn child. She in fact called me stubborn.  Worse she accused me of choosing to be in pain rather than on drugs!  It’s kind of like what psychiatrists do…except it feels worse and uglier coming from someone who should be a natural ally and know better.

 

Anyway…to anyone else who thinks I and others with similar experiences might just start taking meds again (in tiny doses or otherwise) like a good, unstubborn child and clear up all this nastiness that is psychiatric drug withdrawal, I, and 1000s of others of us, CANNOT TAKE MEDS anymore. The iatrogenesis is such that they become dangerous. I have to wear a medical bracelet because the drugs can now kill me the reactions are so radically disabling. I have a doctors note saying such as well: Multiple drug sensitivity (the outcome of grossly over-prescribed medications)   – (and as a side note this excessive sensitivity includes many supplements. Yes, including the ones this woman thought I should be taking).

 

This is our reality…it’s not everyone’s reality, but for those of us with this particular kind of iatrogenic damage it’s very very real.

 

So, right, a lot of us end up with these sorts of sensitivities and can no longer take meds. I’m ALL FOR taking tiny doses of meds if that works for folks. Heck Yeah.

 

I refrain from judging others or assuming I know what is right for them…everyone has their own path. And when it comes to these drugs the harm they cause is phenomenal and varies from individual to individual…having corresponded with 1000s I know this to be true. We are all different.

 

Yes. 

 

We are all different. We should not assume that our particular idiosyncratic experience is generalizable to others. My work tries to underscore this all the time.

 

Read: To my friends and readers who still take psych drugs (and to the whole spectrum of folks on and off meds too) 

 

 

(there is a list of posts at the bottom of that page that speak to when it’s NOT appropriate to come off drugs — because, no, I do not support the withdrawal of psych meds willy nilly)

 

I have done what is right for me…you do what is right for you. This is how we achieve a society of respect with no coercion.

 

I want to remind people I am unable to correspond in general: Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet

 

This person got my email from someone who had it from years ago. It wasn’t a nice email to wake up to.

 

Anyway…thought I’d respond to what her concerns were in case others have them too and while I’m at it I’ll repost the extensive collection on withdrawal info from this blog.

 

Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

 

Below the initial commentary is a collection of links with lots of information to better inform the reader on psychiatric drug withdrawal. Educating oneself and preparing for a safer taper goes a long way in mitigating the risk of serious protracted withdrawal issues.

 

In the course of my work with those coming off psych meds I’ve learned that there are few people, even among critics of psychiatry that have a clue at the potential severity of psychiatric drug withdrawal syndromes. That also means there are virtually no professionals that can offer meaningful support when people encounter serious issues. We remain dependent on each other.

 

Other than those who’ve directly experienced protracted withdrawal or those who have lived with those who have experienced it, it simply remains under appreciated and therefore under treated and under recognized even, as I said, among critics of psychiatry. It’s rather horrifying for those of us who find ourselves struck by such illness. While perhaps a minority, we are not an insignificant minority. I alone have had contact with 1000s of us.

 

The other thing to consider is that we are perhaps not even a minority because the fact is so many issues with withdrawal are not recognized at all and are instead considered and then treated as the “underlying illness,” many folks simply get sicker and sicker on meds and never even know why they’re ill. Those people never come to understand that all the multiple trials of drugs and the numerous times of coming off and on them has actually been the cause of their illness.

 

I’m putting together a collection of withdrawal links for the navigation menu since the drop-down menu has become rather long. I will post it as a new post and then it will be accessible permanently from the top of the blog.

 

Generally, prolonged withdrawal syndrome is not recognized by medicine. You will find very few doctors to diagnose it and still fewer to treat it. This is a collection of links that might help you educate yourself so that you can find more appropriate care when the time comes as well as hopefully avoiding falling ill at all. I found that being well-educated and finding doctors who respected how much effort I put into educating myself helped me. It must be said, though, that it is also a curse because for every doctor who appreciates a knowledgable patient there are likely 15 or 20 or maybe even more who feel threatened by that same patient. Still, it is a plus to know what we are doing.

 

I will update this page as appropriate and as I remember about older posts from the archives.

 

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

 

This post and it’s content really only scratches the surface of the issues we face. Still it’s a good place to start.

 

●  The truth is often ugly… (what people are up against when they choose to free themselves from psych meds)

●  Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.

●  Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet

●  Stop taking your meds, right now… (NOT!)

●  Some thoughts on stopping psychiatric medications – pros and cons to coming off

●  Introduction to psychiatric drug withdrawal syndrome

●  Psychiatric drug withdrawal: Why taper by 10% of your dosage?

●  The slowness of slow tapers (safer withdrawal from psychiatric medications)

●  Withdrawal syndrome vs adrenal fatigue

●  Protracted withdrawal from SSRIs and SNRIs antidepressants

●  GABA/Glutamate cycle in withdrawal from psychotropics– SSRIs, benzos, and Lamictal

●  Benzo withdrawal info

●  Lamictal redux

●  Multiple drug sensitivity (a not infrequent outcome of over-prescribed medications)

●  Trellis: this is your brain on (psych) drugs

●  GABA/glutamate system and how it might work with benzodiazepines and Lamictal

●  Drug Withdrawal and Emotional Recovery

●  Chronic pain (psych drug withdrawal induced and chronic pain in general too)

●  Dogmatic anti-meds stance can be dangerous

●  Alarming report on persistent side effects of antidepressant drugs published online

●  Histamine intolerance(likely to apply to others on psych meds and coming off

●  To those suffering acute and protracted withdrawal symptoms… (it gets better!)

●  Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.

●  Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet 

●  Cold-turkeying off psych drugs is not a wise choice except in a life-threatening emergency   ●  The “Start Small, Listen to Your Body” Taper Plan (psychiatric drug withdrawal)

 

Share all of this information with the doctors in your life:  A plea to prescribing physicians and psychiatrists: please help us heal

 

See here for the Freedom Center and Icarus manual:  Harm Reduction Guide To Coming Off Psychiatric Drugs & Withdrawal (newly revised edition)

 

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

 

I also have a page that is a collection of my own withdrawal documented.  It has a lot of posts that talk about what I learned on the withdrawal boards while I try to recover from my own protracted withdrawal and so a lot of it has value to others in withdrawal: Monica/Gianna: withdrawal documented

 

Recently the concise story of my withdrawal and subsequent disabling iatrogenic illness was published on David Healy’s site, RxIsk: Monica’s story: the aftermath of polypsychopharmacology 

 

More recently I detailed my history on Mad in America’s website: Everything Matters: a Memoir From Before, During and After Psychiatric Drugs

 

And for ways to support your recovery you can visit the Healing Arts and the Nutrition sections at the top of the page. There are drop down menus available with lots of options.

 

If you’ve found yourself very ill from this process I also have a section at the top of the page to support those with Chronic Illness. Check that drop-down menu too or click here.

 

original link to post http://wp.me/p5nnb-9ZL

 

[GiaK]

it's on Mad in America now if you want to brave the comments http://www.madinamerica.com/2013/10/psychiatric-survivors-think-know/

 

I tend to avoid comments...as they tend to just stress me out...

[Altostrata]

Not to worry, the trolls didn't show up in comments to your article.

[alexjuice]

I've had moments where I thought I understood how to solve my health problems in broad ways that equalled solving others problems too. But I try to catch myaelf before I tell other people how to fix themselves. I haven't even fixed myself and I am fooling myself to think I know the answer for someone else. It's a difficult line for me because I want to help if I can but I don't want to hurt. Main thing is for me to recover myself before trying to help another.

[alexjuice]

Also I get this with environmental or holistic doctors who aren't aware of my sensitivies -- my worst problem is w/ the natural products which usually have hrebs or dried organic matter which is naturally moldly and full of mycotoxins. However normal people think these are healthful products and not at all toxic like drugs and other things.

 

However dried organic matttre is not safe for me. Like giving a child with Kashen Beck disease old cereal grains to eat, you are literally asking me to destroy my skeleton by consuming thesuch foods m and this is true for me even though you can eat them w/ out any problem.

 

The idea of complicated illness is very disturbing so it must be your decision to not get well. I think there is a kernel of truth in the holistic sense of everything effect being the culmination of all the causes. So it's right to say that I am in this spot because of everything I did in my life leading me to here. This is not the same as I know how to get better immediately but am not doing it out of stubborness or any ither reason.

[Narcissus]

 

 

I have done what is right for me…you do what is right for you. This is how we achieve a society of respect with no coercion.

 

Amen.

[alexjuice]

 

 

I got an email from someone today who thought they knew just how to save me. A psychiatric survivor who had decided that her experience could be generalized to everyone. She’s doing very well…and that is a lovely thing. What is not lovely is writing me with unsolicited advice.

Do you think she is experiencing survivor's guilt?

 

I was thinking about this today while it was raining. Maybe she doesn't know what to do with what she wnet through and that she is through it when so many are not.

[GiaK]

she actually ended up apologizing to me. and I found out she's not all that well either. 

anyway the post isn't really about her per se...it's about this phenomena of thinking we know what is best for others...and to suggest that we share info without making assumptions. 

[alexjuice]

I am so easily swerved at present I would not care for an outsider interjecting into my care. I am not surprised she is not so healed as she was feeling in the first moment. Probably initiating an exhange like she did is a sign of imbalance. I agree with the principle ei knowing whats best for others.

[Narcissus]

 

 

she actually ended up apologizing to me. and I found out she's not all that well either. 

 

I agree with alexejice, I don't think that these people (and we're all these people to some extent) are ever really well.  I think that when we coerce someone we're basically failing to distinguish between ourselves and the person we're coercing, and this failure seems to stem from the fact that we're incomplete and struggling ourselves.  It''s strange, but people don't seem able to suffer without "finding" their own suffering in others, and the temptation is always to try to suppress it in the other person.  Giving advice seems always very tricky to me, although I think you do an excellent job on your blog Gia.

[btdt]

 

because it's likely everyone here has run into something like this: 

 

original link to post http://wp.me/p5nnb-9ZL

 

 

When “psychiatric survivors” think they know it all…

 

OCTOBER 28

 

I got an email from someone today who thought they knew just how to save me. A psychiatric survivor who had decided that her experience could be generalized to everyone. She’s doing very well…and that is a lovely thing. What is not lovely is writing me with unsolicited advice.  I was familiar with everything she “prescribed” to fix me. Very familiar. If she’d actually read my blog she would have known that. None of it is appropriate for me or many others who’ve found themselves in protracted withdrawal.

 

She assumed that she knew how to fix me. She also spoke to me as though I were an impetuous and stubborn child. She in fact called me stubborn.  Worse she accused me of choosing to be in pain rather than on drugs!  It’s kind of like what psychiatrists do…except it feels worse and uglier coming from someone who should be a natural ally and know better.

 

Anyway…to anyone else who thinks I and others with similar experiences might just start taking meds again (in tiny doses or otherwise) like a good, unstubborn child and clear up all this nastiness that is psychiatric drug withdrawal, I, and 1000s of others of us, CANNOT TAKE MEDS anymore. The iatrogenesis is such that they become dangerous. I have to wear a medical bracelet because the drugs can now kill me the reactions are so radically disabling. I have a doctors note saying such as well: Multiple drug sensitivity (the outcome of grossly over-prescribed medications)   – (and as a side note this excessive sensitivity includes many supplements. Yes, including the ones this woman thought I should be taking).

 

This is our reality…it’s not everyone’s reality, but for those of us with this particular kind of iatrogenic damage it’s very very real.

 

So, right, a lot of us end up with these sorts of sensitivities and can no longer take meds. I’m ALL FOR taking tiny doses of meds if that works for folks. Heck Yeah.

 

I refrain from judging others or assuming I know what is right for them…everyone has their own path. And when it comes to these drugs the harm they cause is phenomenal and varies from individual to individual…having corresponded with 1000s I know this to be true. We are all different.

 

Yes. 

 

We are all different. We should not assume that our particular idiosyncratic experience is generalizable to others. My work tries to underscore this all the time.

 

Read: To my friends and readers who still take psych drugs (and to the whole spectrum of folks on and off meds too) 

 

 

(there is a list of posts at the bottom of that page that speak to when it’s NOT appropriate to come off drugs — because, no, I do not support the withdrawal of psych meds willy nilly)

 

I have done what is right for me…you do what is right for you. This is how we achieve a society of respect with no coercion.

 

I want to remind people I am unable to correspond in general: Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet

 

This person got my email from someone who had it from years ago. It wasn’t a nice email to wake up to.

 

Anyway…thought I’d respond to what her concerns were in case others have them too and while I’m at it I’ll repost the extensive collection on withdrawal info from this blog.

 

Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

 

Below the initial commentary is a collection of links with lots of information to better inform the reader on psychiatric drug withdrawal. Educating oneself and preparing for a safer taper goes a long way in mitigating the risk of serious protracted withdrawal issues.

 

In the course of my work with those coming off psych meds I’ve learned that there are few people, even among critics of psychiatry that have a clue at the potential severity of psychiatric drug withdrawal syndromes. That also means there are virtually no professionals that can offer meaningful support when people encounter serious issues. We remain dependent on each other.

 

Other than those who’ve directly experienced protracted withdrawal or those who have lived with those who have experienced it, it simply remains under appreciated and therefore under treated and under recognized even, as I said, among critics of psychiatry. It’s rather horrifying for those of us who find ourselves struck by such illness. While perhaps a minority, we are not an insignificant minority. I alone have had contact with 1000s of us.

 

The other thing to consider is that we are perhaps not even a minority because the fact is so many issues with withdrawal are not recognized at all and are instead considered and then treated as the “underlying illness,” many folks simply get sicker and sicker on meds and never even know why they’re ill. Those people never come to understand that all the multiple trials of drugs and the numerous times of coming off and on them has actually been the cause of their illness.

 

I’m putting together a collection of withdrawal links for the navigation menu since the drop-down menu has become rather long. I will post it as a new post and then it will be accessible permanently from the top of the blog.

 

Generally, prolonged withdrawal syndrome is not recognized by medicine. You will find very few doctors to diagnose it and still fewer to treat it. This is a collection of links that might help you educate yourself so that you can find more appropriate care when the time comes as well as hopefully avoiding falling ill at all. I found that being well-educated and finding doctors who respected how much effort I put into educating myself helped me. It must be said, though, that it is also a curse because for every doctor who appreciates a knowledgable patient there are likely 15 or 20 or maybe even more who feel threatened by that same patient. Still, it is a plus to know what we are doing.

 

I will update this page as appropriate and as I remember about older posts from the archives.

 

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

 

This post and it’s content really only scratches the surface of the issues we face. Still it’s a good place to start.

 

 

●  The truth is often ugly… (what people are up against when they choose to free themselves from psych meds)

●  Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.

●  Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet

●  Stop taking your meds, right now… (NOT!)

●  Some thoughts on stopping psychiatric medications – pros and cons to coming off

●  Introduction to psychiatric drug withdrawal syndrome

●  Psychiatric drug withdrawal: Why taper by 10% of your dosage?

●  The slowness of slow tapers (safer withdrawal from psychiatric medications)

●  Withdrawal syndrome vs adrenal fatigue

●  Protracted withdrawal from SSRIs and SNRIs antidepressants

●  GABA/Glutamate cycle in withdrawal from psychotropics– SSRIs, benzos, and Lamictal

●  Benzo withdrawal info

●  Lamictal redux

●  Multiple drug sensitivity (a not infrequent outcome of over-prescribed medications)

●  Trellis: this is your brain on (psych) drugs

●  GABA/glutamate system and how it might work with benzodiazepines and Lamictal

●  Drug Withdrawal and Emotional Recovery

●  Chronic pain (psych drug withdrawal induced and chronic pain in general too)

●  Dogmatic anti-meds stance can be dangerous

●  Alarming report on persistent side effects of antidepressant drugs published online

●  Histamine intolerance(likely to apply to others on psych meds and coming off

●  To those suffering acute and protracted withdrawal symptoms… (it gets better!)

●  Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common.

●  Autonomic nervous system dysfunction, protracted psych drug withdrawal, CFS, Fibromyalgia and why I still limit engagement on the internet 

●  Cold-turkeying off psych drugs is not a wise choice except in a life-threatening emergency   ●  The “Start Small, Listen to Your Body” Taper Plan (psychiatric drug withdrawal)

Share all of this information with the doctors in your life:  A plea to prescribing physicians and psychiatrists: please help us heal

 

See here for the Freedom Center and Icarus manual:  Harm Reduction Guide To Coming Off Psychiatric Drugs & Withdrawal (newly revised edition)

 

For general information on withdrawing from psychiatric drugs see here: Withdrawal 101

 

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

 

I also have a page that is a collection of my own withdrawal documented.  It has a lot of posts that talk about what I learned on the withdrawal boards while I try to recover from my own protracted withdrawal and so a lot of it has value to others in withdrawal: Monica/Gianna: withdrawal documented

 

Recently the concise story of my withdrawal and subsequent disabling iatrogenic illness was published on David Healy’s site, RxIsk: Monica’s story: the aftermath of polypsychopharmacology 

 

More recently I detailed my history on Mad in America’s website: Everything Matters: a Memoir From Before, During and After Psychiatric Drugs

 

And for ways to support your recovery you can visit the Healing Arts and the Nutrition sections at the top of the page. There are drop down menus available with lots of options.

 

If you’ve found yourself very ill from this process I also have a section at the top of the page to support those with Chronic Illness. Check that drop-down menu too or click here.

 

original link to post http://wp.me/p5nnb-9ZL

 

 

Ok I am taking a few liberties here and  I know you will get back to this when you can that is all fine with me.  I came here to add something that may in the future help me understand the autonomic nervous system... cause today at physio therapy I seen a poster on the wall that said... effector... organs... pharma... 

 

I will say I am using some pain killers post a car accident and yes I have hypersensitivity... 7 years off.. so not thinking good when I need even a quarter of a t3 I feel it skip all that... 

I came here to post a link I found looking up effector pharma... as i think this word effexor came from effector.. simple eh... it is sometimes the simple things..so found this and will put it here for safe keeping till I get on my feet a bit better...

http://www.slideshare.net/promotemedical/autonomic-nervous-system-pharma

 

As many times as I try I can't seem to get the automonic system figured out or if I do I promptly forget it... not sure which...

Then I seen how you have a bracelet saying not to give you drugs.. it could be dangerous.. not saying it was original but that was my idea on pp when we talked about hyper sensitivity... I can't get a doctor to listen and gave up with the new gp I have ... the reaction to dental drugs that set me back a few months went disected for allergy decided it wasn't and pass down as a TIA in stead... still scared to have lidocaine would not even know how to go about approaching the subject of hypersensitivity with my doctor as I have a difficult time with this entire topic not sure if I am just very bad at communicating or if no body to date wants to hear it ...

my question is how did you get a doctor to believe you... how?  

Tho I know IT I do not want to be tested by another drug to prove it as the who knows next time the damage may not gradually improve.  

 

I know your unwell but when you better or have a good enough day to get to this I would really appreciate some hints.. I hope they don't include finding another doctor as I was years without a gp due to a doctor shortage here in Canada... shortage if you don't have money for private care... ya I know they say we have universal.. not so true. 

[btdt]

Alto maybe these links should or could be put some other place today I cannot find a way to make a new thread.... tho I think I did it before.

http://en.wikipedia.org/wiki/Parasympathomimetic_drug

 

Drugs that affect this system. 

Feel free to move it if you like sorry for taking liberties will make up for it some day. 

[btdt]

at the end of the last link was this edit also see... this

http://en.wikipedia.org/wiki/Sympathomimetic_drug

 

I don't see effexor on these lists tho I think it should be there... 

[GiaK]

I can't say I really deeply understand the autonomic nervous system...but as I learn about my body and do my research I do begin to intuit how to care for myself...

 

A good book that might help a lot is by the guy I write about in this post   Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. his intro videos are there and there is a link to his book...

 

as far as talking to MDs...I've also written a post on how to approach them : Medical compliance? Adherence? No. My MDs are my PARTNERS 

 

best of luck to you!! 

[btdt]

I can't say I really deeply understand the autonomic nervous system...but as I learn about my body and do my research I do begin to intuit how to care for myself...

 

A good book that might help a lot is by the guy I write about in this post   Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. his intro videos are there and there is a link to his book...

 

as far as talking to MDs...I've also written a post on how to approach them : Medical compliance? Adherence? No. My MDs are my PARTNERS 

 

best of luck to you!! 

I have watched all the videos ... not sure I want the book as I have read so many about all these same things.....as the book really worth is? 

MDs as partners I try but really need partners...  I will check that link thanks. 

[btdt]

"that’s all…tell him you’ve researched your condition and that you’re in conversation with others who also have it and that doctors of all stripes alternative and otherwise can harm us…because no one really understands our sensitivities…and well, neither do we, which is why we need help."  

 

I have tried this but it goes over like a lead balloon there is not a lot of choice in doctors for people with no money for alternative care I have no money at this point none... I have a roof I eat that is it. 

Doctors are hard to get there is a shortage if your lucky enough to get one that gets the sensitivity to drug thing well that is winning the lottery.  Different systems need new approaches... maybe.  I am better I can walk without being dizzy don't get brain zaps my bp does not spike over 200 anymore... 

I do tend to react badly to drugs. will read the rest 

I do have one doctor I see very rarely maybe twice a year who gets I react to drugs.. believes me at least... but last time I was there... he went thru a list of drugs I could try most i have been on as I have been such a good obedient patient in the past... I have done most of them and just shook my head at the names.. stopped at one asked more about it and went on from there to more head shaking... you see that is all they have to offer. drugs ... been there done that... I can't do them. 

Thanks for you help. 

and time.