September 23, 2011

To Be Perfectly Honest

The common psychiatric professional  these days would call my malaise, "schizophrenia, undifferentiated."  They would say I was in denial if I disagreed. That is because they simply don't ask the right questions. 

I wean off medications, for months, even years at a time. When I am admitted as inpatient,  I am usually involuntary because I am caught by surprise.  

Typically,  I am treated simply as a person who has "gone off their meds."  Too loony to be credible?  Once I have gotten sleep, other patients end up asking me for help with their complex problems.  Yet, only once in hospital has someone ever asked for a complete story (mine) behind the biochemical disorder they tout is the "cause" of so-called "schizophrenia."

Am I in denial? No, I just ask a lot of questions of myself and then go looking for answers that truly fit my experience.

In getting educated, I asked a lot of questions--not of my doctor, because he was in that other place of denial (over-reliance on medications.). I eventually learned much of the organic brain structural change attributed to schizophrenia in the new sophisticated imaging studies.... is being seen on medicated patients. So, I had good reason to not want to be continually medicated, for  meds might contribute to pathological brain changes if I simply took "their" medications without question. Or let myself be coerced.

As I have said, I am part of a team. I am a participant. A psychiatrist, my therapist and I work together now. It took me learning to trust myself and  encourage my doctor to wean me off medications, so we could find out IF  they were truly responsible for keeping psychosis away the way the medical profession will tell you. 

For me the story is not as simple as "let us lead, take your meds as we prescribe and you will be fine."   I cannot write or have the drive I need in order to create, if I allowed doctors to keep me on the higher dosages considered "conservative" enough for prevention.  Conservative of what, I wonder. For I would sleep so much of the day away that I would get almost nothing done.

Dr. Nash (A Beautiful Mind) really has schizophrenia, for unlike me, he  has residual symptoms. There are significant inaccuracies in the movie. For one, he did not have the visual hallucinations depicted in the movie; instead he lives with voices in his head.  But more deceptively,  in the movie the script has Nash (Russell Crowe) accepting his Nobel Prize, and crediting modern medications in helping him rejoin the world.  Not so. The real Nash did it himself with the support of his  compassionate ex-wife and colleagues at Princeton.

Interviewed privately Nash says that, instead of helping him get rid of his voices, the medications impaired his cognitive function;  he  could not do his complex mathematics on the medications of his time. Talk about a Catch-22. For the medications were supposedly fixing a problem. Nash is humble about his "success," though sure that he needed to be off the medications  to improve his cognition, so important in refuting his voices.  And of course, he needed cognitive function, free of side-effects like tardive diskinesia, to pursue the meaning in his life through his passion, Mathematics. 

Today, doctors will tell you the side effects of antipsychotics are less impairing. I guess that is true if you don't think excessive weight gain and loss of initiative and all-day-grogginess are impairments. If you can accept that as quality of life. I don't. 

As a scientist my poop detector went right off, the very first time I was actually reassured, "It's like insulin for diabetes!"   The truth has a way of showing itself,  as the atypical psychotics,  "better" replacements, have been shown to contribute to diabetes. 

I don't have Nash's worst symptoms.  Like I said earlier, I "just" have this wonderful, rare sensitivity, and it blips into my life and then right back out.  One night of no sleep at a trigger point,  and I lose my usual reference points and can't "make" the curve. Yet, once I am back on track, I can again, make the curves of my life relying on my good cognition (which returns, once I am able to get restorative sleep.)

I continue to wonder, how many stories like mine, with variables like peri-menopause (which often impairs sleep and can produce extreme emotional lability), with poorly managed anxiety... get diagnosed as schizophrenia?  I count my blessings, to know of people whose life experiences have supported my hunches, as I asked the questions I needed to pursue in order to find real healing.

Here is the paradox of emotional (or mental) illness:  An unclouded mind will forever be interested in pursuing the best information and the best choices for health. 

It's been a mighty challenging journey for me indeed, to have my gut feelings validated  when I suspected that the medications were not preventing anything and only "clouded" or impaired my recovery.   For being invalidated is a trigger for me. As it might be for many so-called schizophrenics.

Maybe it is high time we went back to an understanding of schizophrenia that allowed us to consider family history in the diagnostic work up.  I'd like to have the good docs tell me it was not important to my own illness story that, in childhood, the dysfunctional reality of my childhood was also constantly denied.  

I find the conundrum brings a smile to myself these days, instead of anger and frustration.  The smile comes from the relief in knowing I have become correct in assessing my own story. And that is just the way it has to be for lasting healing.

Is schizophrenia a total tragedy, or does it just point out that we need to learn to use more of our minds in order to heal a "malfunctioning" portion of our brain?

To heal the brain, we need to foster healthy thinking, using the mind.  A beautiful mind that is not clouded nor damaged.  Would it not be ironic if the  very drugs we are told we should take (or be labeled "non-compliant") were a major obstacle to true recovery?

I especially find it disturbing that there is a hands-off attitude in the medical profession towards the illnesses involving psychosis. Rarely does a medical doctor stay involved and work on the mental illness together with a psychiatrist (and psychiatrists do not spend much time with patients--15 minute medication check-ins and rarely does the psychiatrist look at the whole health of the individual.)  

As an example of an occasion when a general doctor might be helpful: sometimes  a person will experience psychosis in response to low-blood sugar. Any correlation would most likely be totally missed once the person is diagnosed as schizophrenic.  Or especially so, if  patient were already diagnosed as schizophrenic and on medications. The doctors would, in good conscience, just up the dose.

A cloud indeed for a beautiful mind affected by reactive hypoglycemia or undiagnosed diabetes. 

Another time I will talk about the power of belief, and how for some of us, over-reliance on medications takes away our beliefs in ourselves and our resilience. 


  1. You have captured beautifully my son's experience. He is diagnosed with bipolar II, and schizo affective (original diagnosis- schizophrenia). Since he was an IV drug user and in and out of jail and institutions, he was on/off different meds for over a decade. He had never seen the same dr twice. Addiction made it impossible to get to the bottom of it. He has 17 months sober, and has decided to get off all meds and see what really (if anything) is wrong with him. His psychiatrist is adamantly against this, no support what so ever. A therapist has been a bit more encouraging. The withdrawals off the meds are extreme. It's taking months. I had no idea the side effects of these drugs, and how long they stay in the body.

    Anyway, he is trying to start from scratch. He knows, and the family knows the meds make him "different" (blunted affect, lethargic, etc). I do worry he will go off meds and find out the hard way he IS schizophrenic.

    This post was very helpful (also the link to knowledge is necessary). Many people are in the same predicament. The bottom line, as you say, a person must be an active (pro active?) participant in their recovery. Your last paragraph is perfect!

  2. Lou, I wonder sometimes if the real problem is the fear of relapse. I think a healthy fear is good. But know my fear of relapse at first was so excessive, that I am grateful today for the medication's side effects! As I came off medications it really helped to have grounded people around me who were not afraid of my relapsing, but believed in me a little more than I could believed in myself.

    It is good your son is sober. Likely he used his drugs of choice to keep him from feeling his emotions so intensely. With sobriety, he is likely to be more aware of the emotions (probably anxiety was a big one in triggering psychosis, but so can lack of sleep.) The more your son can reflect on what his triggers are (in a peaceful calm way), the more likely he is to catch himself and be willing to up his dosages... at least temporarily.

    If he can deal with his emotions, relapse is less likely. But in any case, it might be good for him to have a verbal agreement with someone he trusts, that if he starts to lose sleep (more than a night or two), it may be important to have a plan ready for him to resume sleep medications.

    What if he finds a new psychiatrist or asks his psychologist to consult with a psychiatrist he trusts?

    Be good to yourself and gentle and see if you can let go of your worry, so that when you two are talking he feels he can talk to you about anything?

  3. Thank you. Helpful advice. Definitely a fear of relapse. I have been anti meds in the past, and I wonder if he feels pressured into this by my past attitude.

    Before I held a common, uneducated view that people just needed to suck it up. Without the mask of addiction, I have seen the anxiety, agoraphobia, paranoia, and manic behavior up close. I know I was wrong.

    He does use an internet support group. It seems everyone on there feels they need to get off their meds, even though they have problems when they do. Is that part of the disease..thinking you are OK and don't need medication? It seems like ongoing behavior..on meds, off meds, on meds.

    Good point about having someone to talk to if he starts feeling "wrong". He is currently down to 20mg Geodon, and 7.5 Remeron from 80 Geodon and 37 1/2 Remeron. He quit Neurontin and Cogentin already.

    Thank you for thoughts. Really appreciate it.

  4. I continue to be glad that our communication may help you. Please be in touch. I will also check in with you as I can!

    I would feel better if your son had a face-to-face connection with folks coming off meds. But it is what it is.

    Another chance for learning. I affirm that this is a challenge!

  5. My experience with my mother's severe depression was that the medications didn't really keep her from being depressed. She had to have many ECT treatments for that. I have seen horrible affects from the hard core antipsychotic meds when my mother was hospitalized. Perhaps one day, there will be a way to rewire the brain so that the medication affects are not worse than the illness itself.


I welcome your thoughts. Keep me honest~