Thursday, October 13, 2011

No Longer Bipolar / No longer Schizophrenic - Recovered, In Remission, or Misdiagnosed ???

Do people who have recovered from these “lifelong” illnesses of schizophrenia, schizoaffective and bipolar disorder still have these illnesses? Are they now in “remission” while no longer being symptomatic (albeit possibly with effective non-psychiatric biomedical care appropriate to their specific cause of symptoms?) Or, did they have misdiagnoses to begin with?  (Read here for real life stories of remission/recovery from schizoaffective and bipolar -- no longer needing psychiatric medications.)

These questions are complex and highly debated. After all, these illnesses are supposed to be for life. People with severe “mental” illnesses are never expected to “recover,” just to continually struggle with maintaining, or returning to, a state called “in recovery” while on psychotropic medication.

But as readers of my book or this website know, both my daughters have recovered from their severe psychiatric illnesses (schizoaffective and bipolar). (Here is the post about when my older daughter "recovered from bipolar disorder")

Although my book touches on the topic of "recovery" vs "recovered" vs "misdiagnosis," I felt I should expand on this topic here since it is so misunderstood and controversial.

We know that some women have temporary and/or partial "remission"  of symptoms during pregnancy (that should tell the doctors something!). However, we are talking here about the long-term type of "remission" or "recovery" which no longer requires psychiatric intervention for the (formerly) diagnosed condition.

The DSM (“Diagnostic and Statistical Manual of Mental Disorders”) states that when a person is diagnosed with bipolar, schizophrenia, or schizoaffective, the symptoms should not be due to another medical condition.

However, when later found to be due to a medical condition --  such as a brain tumour, adrenal adenoma, Lupus, sleep disorder, or hypothyroidism -- or mostly ignored by many mainstream medical doctors -- such as a reaction to gluten or casein), it is still not a "misdiagnosis" according to many professionals!

Yep! The "psychiatric" diagnosis is never "wrong." because it is just a label for the psychiatrist to use for the emotional, cognitive, and other brain symptoms seen at that time! To the psychiatric perspective, diagnoses (labels for symptoms seen over time) can change, but they do not misdiagnose.  It took me years of confusion to finally "get" this. But in "real" medicine, when an illness is diagnosed as one thing but found to be something else, we DO call that a MISdiagnosis. What gives?

The psychiatrists use DSM diagnostic codes to bill insurance. They MUST give some label - some diagnosis from the DSM for every person walking in through their door in order to bill insurance. They are not allowed to bill with medical codes.

The DSM has codes for mood and psychotic disorders due to medication reactions and medical illnesses. But “Bipolar,” “Schizoaffective,” “Schizophrenia,” “Mood Disorder-nos,” and “Psychotic Disorder-nos” are supposed to be reserved for the cases when the psychiatrist does not know the medical cause.

A medical doctor (as opposed to mental health practitioners) can avoid psychiatric labeling simply by using an ICD (medical) code for a medical illness. If unsure of the medical cause, “encephalopathy” (Any disease in which the functioning of the brain is affected by some agent or condition), can be used. Or, a diagnosis can be made (depending on symptoms) based on the area of the brain affected, such as “hypothalamic dysfunction.”  (For more on this, see: ICD-10 vs DSM-V.)

In my younger daughter's case, the psychiatrist simply stated, after she had stopped having symptoms of schizophrenia while being treated for medical conditions, that if after 5 years she still no longer had symptoms she just "would no longer have schizoaffective."

Others beg to differ. We feel the psychiatric profession should acknowledge these were MISdiagnoses. To the people labeled as bipolar and schizophrenic on medications for years for a "psychiatric" diagnosis caused by treatable medical conditions, it sure feels like misdiagnoses!

Even more controversial, is when the biomedical treatment that eliminates the symptoms is treating a cause that is not documented by an ICD (medical) code (such as by eliminating gluten and dairy, raising thyroid levels, and/or taking nutritional supplements). Here are some differing views:
  1. If  the treatment is not recognized as the true remedy of the symptoms, then the illness is merely considered to be “in remission” but oddly, without medications. However, there is the view that all people with a “mental illness” should be on medication (even if they no longer have symptoms because "once you have a mental illness", they say, "you always have a mental illness"). 
  2. If  it is stipulated that a psychiatric illness is one which can ONLY be treated with psychiatric medications, but biomedical treatment works for the person, then it wasn’t really a psychiatric illness.
  3. If  we accept that these “mental” illnesses CAN be treated with biomedical approaches, it would have to be accepted that autoimmune reactions, food sensitivites, hormonal imbalances, need for micronutrient supplementation, sleep disorders, etc. can be medical causes of major psychiatric illnesses. However, since the symptoms can still return if the treatment stops, the person really does have bipolar disorder, schizophrenia, or schizoaffective disorder. In this case, the person is considered to still be in treatment. (However, accepting a medical cause should negate the psychiatric diagnosis to begin with).
This is long enough for now. Next, I’ll give a real-life scenario of how this works and continue the discussion. (Read here for real life stories of remission/recovery from schizoaffective and bipolar -- no longer needing psychiatric medications.)

Comments, as always, are welcome.

Note, that there are people who seem to have healed from these disorders, and talk about it in terms of spiritual journeys to wellness. Some call it using a "life model" approach rather than a "medical model." That is best saved for other bloggers. Here is one such interesting location for such discussions: Recovery from "schizophrenia" and other "psychotic disorders"

Besides our book, please let me know about other books about people who had been diagnosed with bipolar, schizoaffective, or schizophrenia who are no longer symptomatic. I’ve included some below, along with books by physicians helping with recovery.





And for the non-medical, psycho-emotional theme: Here is one book (memoir) by Lia Govers, who recovered from emotionally-driven delusions, also labeled as schizophrenia.

All these different illnesses. . . all being called "bipolar" and "schizophrenia." No wonder we can't seem to come to any agreement on cause, let alone treatment.

Related Articles:
 
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Last Updated: 10 August 2012

9 comments:

Anonymous said...

I was misdiagnosed as bipolar after being put on a series of psych meds by an irresponsible psychiatrist. I went to hhim to get adderall so I could study better in college. I lied about my symptoms, and hhe diagnosed me as ADHD in 10 minutes. The adderall caused a severe depression, for which he prescribed me lexapro. The lexapro/addwrall combo caused insomnia and anxiety, so he prescribed me trazadone. The cocktail of meds left me unstable, so I was put on depakote, which made me zombie-like. I couldnt get out of bed before 2pm. I started binge-drinking so that I could feel something, and wound up in and out of the mental hospital for months, where I was diagnosed as bipolar. I was.put on a different cocktail of meds that made me shake and twitch. I finally said I wasn't going to take meds anymore, and now, 4 years later, I have no symptoms of mental illness.

Agnewh said...

It's funny. I was diagnosed back in 2008 w/ bipolar, due to a psychotic episode/nervous breakdown. 38 years old and just diagnosed due to a life changing event. I was severly harrassed at work so I told my husband that they were making me sick @ work. They sent me on a paranoid psychotic trip. This one incident has taken me 4 years to get over. Nightmares going back to the day I finally quit the job. It was crazy and I was psychotic.
The past couple of years have been a challenge due to my diagnosis. I was so upset about being diagnosed with this disorder. I have never been an unhappy person just unhappy about traumatic events that happened in my life never being able to let them go.
Talking to the therapist don't do any good. Yes, they have taught me one thing, that writing my feelings down helps but other than that, nothing in everyday life. Nothing more than a friend which they are not. Recently due to some situations in my life I have been faced w/ family members going against what in my mind was morally wrong and my therapist and doctor told me I was wrong for thinking that way which was a way the way I was raised. My husband was talking to one of his ex's on FB in a not so nice way so I told my dr. and therapist and they said I was being parnoid. WTH! I read the messages myself.
I have to go to my therapist to get meds from my Dr. My Dr. visits consist of a 15 min. breakdown of what type of meds I'm on. WTH! He is the professional or the pill pusher. I know I have a bad attitude about it but I feel that just learning that just getting through life in general has made me stronger not meds. He has me on Abilify a $400 month medicine which I can't afford. I am getting them for free for right now but that will soon change. I have asked him several times to give me something that I can afford and he won't do it. I'm ready to quit it all and take my chances on my own. I'm disgusted!

Sofia said...

I was diagnosed with bipolar in 2002, when I spent a month in hospital after repetitive suicide attempts. I was given Deprakine and Risperdal but they didn't work, so I quit the meds and was out of care for few following years.

My symptoms worsened in 2006 and I entered the treatment again, and I was started on lithium and lamotrigine. These helped, and my life stabilized. I also started state-funded psychotherapy (I live in Finland) to treat my borderline personality disorder. I'm now starting my 4th year in the therapy (first 3 are free).

I had my last episode in 2009, but continued eating meds nevertheless. I finally decided to try living without meds this year - and behold, the symptoms DIDN'T come back! I've been now off meds for over six months and have not had any bipolar symptoms again. So much for eating the meds for years!

I've started to think that maybe I was indeed misdiagnosed in the beginning, I was in my late teens (18) when I got the bipolar diagnose. My borderline diagnose was done when I was 16, and I've never questioned that. Later I've started to think that my symptoms overall would fit ADD (inattentive) much better than actual bipolar.

So yeah, apparently I'm considered to be "cured" from bipolar even though my documents still state I'm just "in remission". My doctor warned that my bipolar might re-activate when I hit menopause, but that's still another 20 years down the road.

Until that day, I'm enjoying my med-free life!

Anonymous said...

I was diagnosed with Bipolar disorder at the age on 29 and thought the psychiatrist was the crazy one. After protesting medication, I relented to my horror. The side effects were indescribable. I had been told silly things like, " you inherited this. Even though no one in my family has any mental health diagnosis! I was also told that I would need to take medication for at least 5 years. Well 2 years (hmmm) later I decided to taper myself off the 5 medications that I had been prescribed, against the psychiatrist wishes. I found a website that taught people how to taper off their meds. I was so relieved to know that it was even possible. I followed a few of the instructions, but did it mostly my way. I succeeded! (took three months) and I have been off off my meds for 1 year and a half! I have NOT relapsed one time. ALL of my side effects from my medication disappeared: Sleep apnea, insomnia, hair falling out, moodiness (ironically!) I did this WITHOUT vitamins, exercise or changing my diet!
This does NOT suggest that this is a remedy for everyone. I have come to the conclusion that I may have NEVER had bipolar disorder in the first place and that many of my symptoms were actually prescription drug induced. The psychiatrist told me that she has never heard of someone going permanently off off their meds. Well I have not seen her for about a year. I would love for her to see me now. Medication Free, thriving and loving it.
I now work in the mental health field and recognize that some DO people need medication to control their symptoms. I am now on my way to earning a masters degree in social work to help people advocate for themselves when it comes to their health. I am discovering that some diagnosis of mental illness may have medical causes that have not been detected by doctors. The bad thing is that most doctors will tell you that it is impossible to taper off meds completely. So trust your body first!
Hope this help. Be Well.
P.S.- I have medical documentation that shows that I have not been taking meds and have been just fine!

marlowg said...

How I Cured My Bipolar Disorder.
I read that omega-3 was being used for psychiatric disorders and gave it a try for myself. It didn’t work, but I noticed that after 13 years my urine had no calcium sediments in it anymore. Before omega-3 supplements any extra calcium I ate showed up as extra urine sediment. I then read that calcium was important for proper neuron function and added calcium supplements to my diet thinking that I might not be getting enough. I increased the amount until I started seeing calcium sediments in my urine again. My mental symptoms stopped then. I believe the mechanism for the success of omega-3 is through its ability to allow the body to maintain a higher blood level of calcium. Higher calcium levels are known to reduce the level of excitability of neurons. Perhaps omega-3 allows the kidneys to reabsorb calcium to a level that satisfies all the body’s requirements.

Anonymous said...

E I WOULD LIKE TO SAY YOU CANT HAVE MENTAL ISSUES WITHOUT EMOTIONAL HURT THEREFORE EXEPT IN RARE CASES CIRCUMSTANCES IN LIFE IE ENVIROMENT IS THE ONLY CAUSE SO CALLED EXPERTS WILL TELL YOU DIFFERENT BUT NONE OF THEESE HAVE BEEN DIGNOSED WITH MENTAL ILLNESS SO WHAT DO THEY REALLY KNOW OUTSIDE THE TEXT BOOK COMPILIED BY YOU GUESSED IT THE EXPERTS MEDICATIONS JUST CURBSTHE PROBLEMS WITHOUT REALLY FIXING THEM ENOUGH OF THE HEAVY STUFF I AM 59 YEARS OLD DIAGNOSED WITH BI POLAR MORE THAN 20 YEARS AGO RIGHTFULLY SO ON PRESENTATION AT HOSPITAL BUT ONLY I KNOW HOW I GOT TO THAT STATE AND THE ONLY ONE WHOCAN TURN IT ARROUND MY DOCTOR TOOK ME OFF MEDICATIONS 6 YEARS AGO SINCE THEN I HAVE COPD WITH THE DEATH OF MY MUM AND DAD AND MOTHER IN LAW AS WELL AS HANDLELING THEREMIFICATIONSMY ILLNESS CAUSED MY WIFE AND CHILDREN ITS AN ONGOING JOURNEY BUT WE BE FINE I SINCERLY BELIEVETHIS TO BE TRUE

McAllister Craig said...

How my son was cured from psychosis.
My son Jim was down with psychosis which his major symptoms was his aggressiveness and violence towards us and anyone, the psychosis which struck him at the age of 17 he had to drop out of high school and he was kept under watch indoors and this took the major part of his life because it all lasted for 14 more years before i was able to come across this useful website www.brainhealthpress.com that treats and cures psychosis, schizophrenia and i contacted them, and told them all about my son's condition and they gave me hope and assured me that he will be fine and in the end their doctor came to our house and treated him personally at our house in Texas using their herbal medicine which he was on for 3 months and his condition was better and in 6 months he had no symptoms of psychosis anymore, he was normal again and he was no longer aggressive and violent. Today i am a proud father, because i was shy about him before where others introduced their son and i remember mine. Before this we had tried various prescriptions (rispedal, zyprexa) from our psychiatrist and several therapies to suppress the symptoms that all failed. When he was 25 his condition heightened and he became super aggressive and very violent. Today my son is doing fine and he is no longer aggressive to anyone. If you or anyone you know have psychosis, bipolar disorder or schizophrenia simply contact them on (info@brainhealthpress.com) they can help you regain your lost sanity just like my son. I hope this information helps someone out there.

Kathryn Carter said...

Whether you're a mother, father, sibling or friend with schizophrenia, or someone suffering from the disorder yourself, my daughter's story should inspire others for future. My daughter spent most of her teenager and twenties struggling with mental health (schizophrenia). She faced discrimination because of her illness too. But it’s a myth that people who have schizophrenia have no chance of permanent survival, hence, they can’t do great things and achieve their dreams/goal. Especially, with family love and support of others. I am personally sharing this for the sake of patients who are passing through pains and frustrations. Our breakthrough, achievement and success is credited to an herbal medicine called CONSUMMO, because there has been in the past too much pessimism and bad news about the illness, that it is incurable. Have a look here: http://curetoschizophrenia.blogspot.com . My daughter is back and permanently heal without any schizophrenia symptoms. Mental illnesses are a curse upon human kind, only those with mental disorders truly understand.

Jenni said...

I posted my original comment in 2012. In 2015, I was finally correctly diagnosed as inattentive ADHD and was started on methylphenidate. My life has positively turned around. Now I'm thinking how many more women there might be who have incorrect diagnosis of bipolar, when it's ADHD all along...