My Sojourn through Bipolar Illness – Surviving the Laboratory Rat Syndrome

The meds discussed here are the meds I have taken – there is no recommended psyche drug here in this post or others as what is therapeutic for one is not therapeutic for all – hence “the laboratory rat syndrome.”

In the 1980’s Lithium and Tegretol for maintenance and Mellaril, Ativan and Haldol for acute break-downs were largely the only psychotropic drugs on the market.  Since the late eighties, this has largely changed with the break-through of any number of medications including Clozaril which I now take.  The issue now is the side effects of these newer drugs.  Their impact on managing the illness has increased 100-fold but the side effects have also increased.  Weight gain associated with new psychotropic drugs is a serious concern and may lead to the onset of Type II Diabetes for me as well as for others.

What has not changed over the years regarding medication is the process by which the correct medications are found and administered. I call this “the laboratory rat syndrome.”  Through no fault of prescribing medical doctors, prescribing the correct medications is often more of an art than a science.  Patients may react to meds in very different ways since brain chemistry for different people and different illnesses may cause people to respond very differently to the same psychotropic drugs.  It is not unusual to try a drug for three or four weeks to see if it works and then change the meds if it does not help sufficiently. 

This “laboratory rat syndrome” requires that the patient partner outright with his or her prescribing doctor.  Being clear and truthful about what drugs are working at what levels is a crucial part of managing bipolar illness or any related mood disorder.   Without this feedback from the patient, the doctor virtually is in a guessing game with the patient. If the patient can provide clear and honest feedback about what medication is working and what is not working, this allows the doctor to more easily do his or her job. 

In the last few years. I have turned a corner with my care providers including working with my therapist and my doctor on meds.  I attribute this success to a relatively new Spiritual goal of becoming transparent in my psychiatric care.  I try not to minimize how I feel and to disclose how a certain drug is working or not.  My communication is straight-forward and sincere with the end goal to find a medication mix that works and that keeps me and my family safe and that allows me in time to live freely and perhaps work a job that I envision.

Medical care in psychiatry also has come a long way since 1985.  Doctors in the behavioral health field seem more “normal” for lack of a better word than their earlier counterparts who seemed to be more fascinated by illness behaviors than interested in helping to cure or manage those behaviors.  Many earlier doctors of mine seemed to be more drawn to the abnormal behavior patterns in me as a patient than drawn to treating or reversing those behaviors.  For the most part in my perception of things, this preponderance for the bizarre no longer seems to be what draws behavioral doctors to their field.  I can vouch for both my current doctor and therapist that they are expert in providing top-notch medical treatment.  Their regard for my person and not their regard for my illness is what I appreciate most in each of them.   And it shows.  Just as meds have progressed in the last thirty plus years, so has psychiatric care as well as resources for family and friends of the diagnosed. 

What are your experiences with trying to find the meds that work for you? Have you also had to try out various meds before finding one / some that is /are therapeutic? Does the process require that you super-connect to your prescribing doctor?

Whether to seek hospitalization or family care?

There was a time in my life where I lived in the same city as my sister. For a period of about 7 years my sister invited me into her home and volunteered to help administer meds when I was in the midst of what I call a mini-break. I feel like this treatment time in her home was instrumental in the prognosis of my illness. I was able to hang out with family even when I was severely ill.

In more recent years, I have come to understand that in Europe home treatments for mental illness are more popular than here in the States. I don’t thoroughly know why that is. But I do know it takes a village.

The progression of my illness since about 2008 using clozapine has basically stopped the occurrence of these mini-breaks but there may be a time when I bump the meds up for a particularly rough day. This is generally in step with my doctor.

The relative stability on clozapine beginning in 2008, however, was preceded by a time of hospitalizations about twice a year after my daughter was born. This was about 2004 to 2008. Prior I had had a period of hospitalizations from 1986 to 1988.

Do you think those who have severe behavioral health concerns/break-through episodes should be treated in the hospital or by a family member who is educated about treatment protocols, medications and the general course of the illness? What do you think about hospitalization versus family care? What are the benefits of each? What are the drawbacks?

My Sojourn through Bipolar Illness – Development of High Anxiety

In the years after I was first diagnosed with bipolar illness, I would have a break and go into the hospital about every six months.  Eventually with the right meds I got to the place where I would have mini-breaks every six months and stay with my sister Jane and her family rather than go into the hospital.  This was during the days of Mellaril, Ativan and Haldol.  I would leave my apartment and take the subway to my sister Jane’s house about 25 minutes away.  Oftentimes this ride was a huge challenge.  I would arrive at Jane’s house with an overnight bag and some meds and put my belongings in the basement where there was a guest room.  I would spend between three and seven nights at Jane’s house where she would help me with administering meds.  In those early days, the anxiety associated with waiting for the meds to kick-in was excruciating.  I often requested to hold Jane’s hand as we lay in the bed until the medication had had time to sink in and sedate me. 

At that time, the meds for bipolar illness were not very advanced.  Meds seemed at that time to treat the symptoms of the illness rather than seeking to manage the illness before the break-through of mini or grand episodes.  I am forever grateful to my sister for allowing me several years of staying with her and her family every six months or so and managing though those mini-episodes. When I was at her house and under the care of Mellaril, Ativan and Haldol, it would take about an hour for the impact of the meds to sink in.  During that hour of sheer hell I would sit and smoke cigarettes nonstop waiting for the meds to kick in.

Since those early days of a mini break every six months, I have been prone to high anxiety which is often at times consuming and sits sometimes in the background, as a nagging reminder that I continue to struggle with my moods every day.   Managing the anxiety associated with bipolar illness has developed into my greatest challenge besides the reversal of stigma.  Perhaps pairing the management of this anxiety with a willingness to explore potential abuse as a child will make an impact on this generalized anxiety – hopefully reducing it substantially. 

I also have more recently added an additional medication Trileptal to help with the anxiety and this appears to be making a difference for me.

As an aside based on commonplace discussions, I have been told that family intervention for people with behavioral health diagnoses is much more common in Europe than in the US.  Just like our propensity in the US is to care for the elderly in homes for the elderly, we tend in the US to care for people with psychiatric disorders in a hospital setting.  Personally, I feel that the more care that can be provided in the context of the family and the family home the better.

Once again, my illness has developed in phases.  Early in my diagnosis were “grand episodes” including hospitalizations.  These ”grand episodes” gradually gave way to more “mini episodes” managed in the home with a few exceptions. In my postpartum period, I was back to having “grand episodes” and being in the hospital again for those first three to four years. 

As I became more comfortable with managing my illness and being a Mom, I went back not to having “mini episodes” but to having a general level of anxiety to manage at all times.  Goals but not necessarily accomplishments include daily meditation, daily exercise goals including walking and yoga and a daily commitment toward transparency in my faith and my diagnosis.

I Am Grateful

This past week my doctor asked me to retake my monthly blood test because my white blood cell count was very low and I was immune system compromised. My doctor was saying we might need to change meds. This made me fearful on two counts. One, I was fearful about finding a new medication that would work for my bipolar disorder. I have been on this medication for 12 years and it has been largely therapeutic. Two, I was worried about a compromised immune system in this time of rapidly spreading illness. Lo and behold, I found out yesterday that my white blood cell count was on the rise! There is no need to change meds! though I do have to rest and mend myself from fatigue. Happily, I do not have covid-19 symptoms. I am truly grateful for this news. I cannot imagine trying out new medications in this environment of social distancing and the like. The goal now is to rest and get liquids and exercise in order to boost the immune system.