Friday, February 5, 2010

Bipolar and Off Her Meds

Words that usually strike fear into a parent’s heart are that their adult child with a diagnosed mental illness is off their meds.

My older daughter suffered 13 years of unrelenting, unstable bipolar disorder in spite of hospitalizations, psychiatrists, therapy, and strict adherence to medications.

She is finally STABLE, but NOT while on any of the past psychiatric medications.

She is finally stable, AND off her meds. (Part 2 here - Getting Better and Part 3 - Recovered: No Longer on Psychiatric Medications or, start with the book that started it all -- It's Not Mental)

Huh!!???

It was the winter solstice when I reminded my husband to really appreciate the moment. After all, we'd had years of darkness with the younger daughter's childhood-onset schizophrenia/bipolar (schizoaffective) and the older daughter's teen-onset bipolar disorder.  “Mental” type illnesses run rampant in the extended family –from anxiety disorders and depression to frank schizophrenia. The book is mainly about the younger daughter. This is about the older one. (After helping the younger daughter's more complicated case (see book), we at least knew "tricks of the trade" to help the older one).

Both my daughters had come over with their significant others to look at all the holiday cards and gifts from family and friends that had been sent to our home. The two girls were huddled together reading the cards and family letters, laughing and talking. The younger fellows were looking at a laptop that had been plopped on the table and were talking about various software apps. The successful college semester was over and our daughters were really enjoying this downtime. I was getting a simple dinner together to place on the table.

And that's when I turned to my husband and said, “It doesn't get any better than this.”

My older daughter's onset of bipolar disorder had initially presented as depression. Given an antidepressant, the psychiatrist missed that she was slowly cycling between hypomania and depression. It was the typical slow cycling at first, but being left on an antidepressant even while hypomanic exacerbated the illness until she was cycling faster and faster, culminating in ultra-ultra rapid cycling (ultradian cycling) with mixed states. This is the hardest type of bipolar to control.

At twenty, she was hospitalized and put on lithium while being in a clinical trial for a novel atypical neuroleptic (antipsychotic). She suffered some severe side-effects and her medications had to be switched, but at least the extended hospitalization and close monitoring gave her time to learn about her bipolar illness, how to take care of herself, and gave her time to process what had happened to her.

Next came the typical years and years of hospitalizations, lost life and lost opportunities, as medication after medication and combinations of medications were tried, without achieving stability or a return of her previous cognitive functioning. She at least had insight and persisted with cognitive behavior therapy (CBT), learning to deal more effectively with her symptoms and side-effects of medications.

A decade later, the psychiatrist was running out of medication options, and my daughter had suffered the dreaded but hopefully-not-permanent side-effect Tardive Dyskinesia (TD) from the last antipsychotic trial. Note that she never had psychosis. The antipsychotics were given on top of other mood stabilizers to try to control the ultra-rapid mood cycling.

With nothing left to lose, she looked at how well her little sister was doing, and wanted to go that route. Her little sister had been diagnosed with what was supposed to have been an even worse psychiatric diagnosis with a poorer prognosis than hers--schizoaffective disorder-- yet was doing better, as far as psychiatric and cognitive symptoms go. In fact, her little sister no longer had any of her previous "schizophrenia" symptoms.

The older daughter had not been ready to follow in her sister’s footsteps before because some of what her little sister had to do was change her diet. She was scared that she might need to as well.

But she was ready now. Ready to change doctors, get biomedical testing, get treatments for medical issues if any were found, take supplements, and even, if found to have a problem with gluten and dairy as her little sister did, give up her beloved breads, cheeses, and milk.

Her case was found to not be as complex as her little sister’s, but she still had to address some of the same major issues: Sleep, hormones, gut, diet and nutrition.

In another post, I will go into more detail about how each of those issues were addressed in HER case.

For now, I want to say that getting off her now-unneeded medications was an arduous ordeal due to horrible withdrawal symptoms. The withdrawal of the medications was done very slowly and carefully.

The goal had NOT been to get off her mood stabilizer, and for a long time, she TRIED to STAY ON it! But she was getting symptoms of being overdosed. She slept eleven hours a day and was still fatigued. Additionally, she was clumsy – bumping into things, and dropping things. And more dangerously, she often fell over while standing or walking. One of the times she just suddenly fell over, she injured both her feet and was in a cast for 4 weeks. She asked her psychiatrist if she could be having a side-effect of her mood stabilizer, Lamictal, and he said NO—that her hypersomnia (excessive sleeping) and fatigue was not a reason to lower it. So for a long time, she didn’t lower it. But what the psychiatrist had told her was not correct.

Confusingly, each time she lowered the Lamictal, she got psychiatric symptoms. At first she mistook this for needing the Lamictal and would raise it back up, only to again be plagued by the overdose (side-effect) symptoms.

Learning from the horrible withdrawal her younger sister had gone through lowering some of her medications, she toughed out each tiny decrease in her own mood stabilizer dosage, and within a few days the psychiatric withdrawal symptoms subsided.

She’d feel better for a while.

But each time as her body healed more, and additional biological/medical interventions were initiated, she would start sleeping excessively again and falling over. Soon she recognized these as overdose symptoms, and would again lower her Lamictal dosage.

Then came the day when she was completely off all her psychotropic medications, and over the withdrawal symptoms.

And she was completely—solidly—unbelievably—STABLE! She could even handle stress better and had less anxiety issues now OFF the meds!

For a person with ultradian cycling bipolar who’d been affected every day of her life for over a decade, being stable for days, let alone a couple months, was beyond remarkable.

Without the medications, she has realized many benefits of not having side-effects. She can think more clearly. She appreciates having a better sense of balance. She has lost weight and has the energy to be more active and healthy. She has more time in the day to get things done, go to college, volunteer at a free clinic, and hang out with friends.

And the goal in all this was not even to come off meds. She just wanted stability since the meds alone were not doing the trick.

But once these other issues were addressed, she didn’t NEED the bipolar medications.

It just left us all ecstatic, dumbfounded, and saying, “HUH????

She then asked the $64,000 question—“So does this mean I don’t have bipolar disorder??”

Interesting question. We had never doubted for one moment in those 13 years that what she had was bipolar. She seemed to have not just the bipolar mood swings but what people refer to as "bipolar thinking" and "bipolar personality." She made poor choices.

Now I reflect back on that, realizing ... DUH - of course she made poor choices--many of which adversely affected the course of her illness.... but DUH... her BRAIN was affected! The choices didn't CAUSE her illness. The illness caused the poor choices!! The fact that she managed to get out of the quagmire of her own thinking to take the steps necessary to get well is a testament to her maturity and.... something.... something really special that I cannot put into words.

As far as I know,  according to DSM-IV diagnostic criteria, the answer would be “YES, you still DO have bipolar.” But that then brings up another question. SHOULD an obviously non-psychological problem--a set of physical problems affecting brain function--BE a diagnosis in the DSM at all?? Obviously her "mental" illness is MEDICAL. Others tell me if she is completely fine and not on psychiatric medication, the answer is NO. But needing psychiatric medications to control bipolar is not listed in the DSM as a diagnostic criteria. And look at all the other children and adults with "ADHD", "bipolar" and "schizophrenia" now doing fine, off meds, simply using a multi-nutritional suppplement (Truehope's EMPowerplus). If we find something medical/nutritional to help them does that really mean they do not have the psychiatric diagnosis?

All I know, is she cannot relate to her former(?) diagnosis anymore since she no longer has any symptoms. She has her brain back - better than before.

It is obvious her "mental" illness is being treated better now—completely and effectively— and with no side-effects, by addressing personal medical, functional, metabolic, physiological needs rather than trying to directly affect brain chemistry with the psychotropic prescription medications with no real understanding of what was causing the affected brain chemistry, nor, obviously, having the right chemical cocktail in the form of a medicine to correctly alter that brain chemistry.

And if you wonder if there was any way we could have gotten her better sooner, knowing what we now know. You may be surprised at my answer. "Perhaps not." But that discussion will have to wait for another day.

For now, you can read more about her recovery here:
Getting Better - Part 1 - Overview

Related Reading:

Related Books



See also, books by Michael Pollan:





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Last Updated:
9 October 2011

4 comments:

Anonymous said...

Jeanie,

I finally got around to reading this. It's very well written and informative. I have recommended your blog to a friend. Thanks for sharing.

Darryl

Groves said...

Thank you so much for writing this down. Your experience - and hard-won information, having gone through many trials to get here - is worth more than you can imagine. I'm sure I'm not the only one reading and learning.

A doctor told me that I was bipolar, and it turned out that I had severe electrolyte imbalances due to kidney damage! Once those were dealt with, I was "no longer" mentally ill. I think so many things are called mental illness that have an underlying physical cause - and if that can be corrected, much relief can come. It is just a matter (and a very HARD matter) of finding the right doctor and getting to the bottom of the mess.

I really admire you and the way that you have soldiered on through all of this. You and your family deserve gold medals!

I pray that your daughters continue to get more and more relief and can enjoy their lives as fully as possible.

Thanks again. Please keep writing when you can - and the book links at the bottom of your posts are invaluable, too.

Cathy

Kim said...

I am so happy your daughters have been able to get off their meds. I, too, after 20+ years of being on much needed antidepressants, am weaning off due to overdose symptoms which have resulted from being diagnosed with gluten sensitivity and systemic yeast and maintaining a strict gluten free diet and being treated for the yeast. Oh, and also avoiding 30+ other foods I was found to be allergic to (had antibody testing.)

I obviously identify with your daughters' experiences but what was the cause of their "mental" illnesses? Gluten, food allergies?

Thanks!

Jeanie said...

Kim,
For the older daughter, her "bipolar disorder" was much like yours. She also was treated for systemic yeast. She has gluten sensitivity and dairy turned out to cause symptoms which were identical to what had had been termed "ultradian cycling bipolar" (ultra-ultra rapid cycling). She also needed her thyroid hormone level raised.

I know - I keep saying I need to write more about that... will do, soon.

-Jeanie