Anybody Experiencing Memory Loss (revisited)?

This original blog post on memory loss and mental illness posted almost 2 weeks ago has had the most traffic of any of my posts: https://wordpress.com/block-editor/post/mental-health-is-health.com/473

For that reason I am revisiting it. With this update, I am trying to understand when people experience memory loss, what kind of memory loss it is and how long it lasts.

  1. Are your memory issues associated with certain episodes of mental illness, meaning they just occur when you are in a depressive state or manic state or the equivalent for you?
  2. Do these memory issues linger after the episode is complete?
  3. In other words is your memory loss temporary during the episode or does the memory loss remain after the episode is complete?
  4. Are you more likely to experience short-term memory impacts or longer term memory impacts?
  5. What coping mechanisms like writing notes, leaving reminders on your phone have you adopted to help manage the memory loss?
  6. Do these mechanisms help you manage the memory loss?
  7. Would you say the memory loss is mild, moderate or significant?
  8. Have you talked this through with your care team / doctor / therapist?
  9. Do you believe the memory loss is a function of the mental illness or the medication or both?
  10. Do you feel covid-19 is a factor in your memory loss?

My memory loss issues are largely short-term — where did I put the car keys or the phone? I also might forget going to a certain restaurant a month or two ago. My memory issues tend to exist during and after episodes and are not episode-specific. The memory loss is there whether I am showing signs of bipolar break-through symptoms or not but are worse for example when my anxiety is high. So far, I have not taken this up with my therapist and my doctor since the problem has been on the mild side. But since the memory issues may be getting more prominent I will likely share with my therapist and my doctor at my next appointments. I am not sure whether the memory loss is medication-specific or illness-specific. I use notes and to-do lists all the time to help manage as well as a few reminders on my phone. I use a hand-written calendar to track appointments and dates. I also use my online calendar to manage appointments as well. I have a bulletin board set up in the kitchen as well to post things that need my attention in the short-term or mostly in the long term. I would say covid-19 is a huge impact since all the days do run together one to the next.

Thanks for sharing your insights on memory loss as you are able.

My Sojourn through Bipolar Illness – Intermixing with Police and First Responders

I am of the mindset that police and college campus police could do well with more training as to what constitutes a paranoid episode that is largely safe and what constitutes a paranoid episode that is largely unsafe.  I feel that the police serve in a hugely defining role as to whether someone experiencing an episode of bipolar illness should go the hospital or be incarcerated.  There is no such distinction for any other type of intervention that the police are called upon to mediate.  It takes a great amount of training about paranoia and how it operates particularly in the minds of our youth.  If psychiatrists are largely unable to determine when paranoia is linked with violence or not after days or months or years of working with that person, think what a challenge it is for a police man or woman intervening with no case history on the patient while being charged with the safety of that patient and all bystanders.  It is a huge responsibility that falls on the police and college police. 

I have worked through NAMI (the National Alliance on Mental Health) in their In Our Own Voice Program to talk with these First Responders and provide more insight into the patient’s point of view when these incidents occur.  I found the reception at that event quite welcoming as if the police or campus police had never had a conversation with someone prone to paranoia when that person was outside of that paranoia event.

In any case, I find the work of police and campus police to be a gargantuan task.  It almost requires the intervening police officer to be all-knowing and to be able to size up the situation in a matter of minutes as to whether the person before them is paranoid and a danger to others or paranoid, a danger to themselves and needing hospitalization.  I feel that additional training in differentiating these behavioral health outcomes should be mandatory both for crisis interventionists as well as medical and clinical professionals.  As a person who has experienced mania and being a danger to self and perhaps others, I readily do not see a clear line for police to follow from which to determine how best to intervene.  If I am unclear on that intervention after 30 plus years of managing (or trying to) the illness, I would imagine most police and campus police feel that they are overwhelmed and alone as First Responders in assessing the case of a behavioral health incident.

I feel for the police and the campus police and their courage in this line of work and believe that greater training like that of NAMI’s In Our Own Voice Program is extremely important.  I had one first responder come up to me at that In Our Own Voice presentation and thank me.  The officer had never talked to someone with a tendency toward paranoia when they were not in a paranoid state.  All he had ever seen was the patient at the height of a paranoid event – he must have assumed through no fault of his own that that state of paranoia was the norm for that person rather than a state that comes and goes and can be managed for the most part through medications and talk therapy.   

The First Responders should have some sort of script that allows them to assess if the danger is being directed internally toward the patient or if the danger is more generalized to people external to the person experiencing the breach of reality.  I do not claim to have the content to that script in full, but my current thoughts about how questions for this script might go is something like what follows.  This script below should be vetted by a team of first responders, therapists, doctors and other professionals and is only a “strawman” from the point of view of one patient.

 I am going to ask you a series of 20 questions.  I would like for you to respond to each question to the best of your ability. OK, are you ready?  First question: 

          1) What is your name?

2) Are you a student here?

3) Are you feeling OK?

4) What is the date today?

5) Are you feeling suicidal?                

6) Have you ever felt this way before? 

7) Do you have a mood disorder illness?   Have you ever been hospitalized for a mood disorder?

8) Are you hearing voices?

9) What are the voices saying?

10) Are the voices asking you or telling you to harm yourself?

11) Are the voices asking you or telling you to hurt anyone else?

12) Do you have a weapon?  Are you intending to use it? 

13) Where did you get it?  Have you had it on you for several days or just a few hours?

14) How long has it been since you took a shower?

15) How long has it been since you had a full meal?

16) Have you been using any mind-altering, recreational or prescription drugs?

17) If so, what are they?

18) Do you feel safer now that the paramedics are here and we are talking?

19) Is there someone in particular you would like to talk to? Your parent? Your friend? Your psychiatrist? Your therapist?

20) What do you need to feel more calm?    

If there had been such a script available for use by First Responders at the West Ferry airport back in 1985, perhaps my first episode would not have been so cataclysmic.  Perhaps I would not have been plagued by security concerns for several years after this first episode if that episode had been less threatening and less dramatic. 

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?

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.

My Sojourn through Bipolar Illness – Clothing Then and Now

I have continued to have some sort of fixation with clothes and clothing – not only the color in which they appear but also the “privacy” of the label.  Sometimes this label is not private and is emblazoned on the back pocket of the jeans as in Calvin Klein jeans from the 1970’s or even the Levi’s name tag on that ever so timeless brand of clothing.  I am unsure what this fixation on clothing entails exactly.  I do know that it is tied with some body image issues that get complicated because of my need to take regular meds for my bipolar condition. 

Throughout high school and college I remained a size 6 to 8 when I perhaps should have been a size ten.  After meds were introduced in my life I was almost always a size 8 to 10.  After bearing a child and substantially increasing my meds, I have been more a size 12 to 14.  My goal at this juncture in life is to be back at that size 12.  Perhaps my obsession with clothing is in parallel to my own body image issues, perhaps not. 

In any case, the preoccupation with clothing seems to have something also to so with pattern recognition.  If four people out of ten wear red to the office that day, I notice it.   If black was worn by person A on day one and by persons B, C, D, and E, I notice it. Not that I really ever did anything with the information, it was just a layer of the type of perceptions I would have – extraneous and meaningless maybe or maybe not.  Definitely with a focus on color patterns and patterning.

In my teens, I spent hours shopping for the right clothing.  Today, I abhor shopping for clothes largely because I am two sizes bigger than I would like to be.  The preoccupation with clothes at an early age is probably all wrapped up in image.  I have very little to say in that regard today as Ego is largely drained from my daily events.  I tend today to wear the same make of clothes all the time and often repeat the same outfit once a week.  In fact, I do not care about clothing at all.  It is a chore to buy clothes and it is a chore to pick out clothes for any given day.

While being diagnosed with an eating disorder is something I have considered as relevant to my mental health, I feel that my weight gain issues center more on body image issues and medication use.  For years, I bought into the fashion magazine mindset that you were not beautiful unless you were a size 6 or size 8.  For years throughout high school and college and into my twenties, I ate and exercised in order to maintain a size 6 or a size 8 figure.  Often this meant running three to five miles several times a week and counting caloric intake to be about 1000 calories a day.  When I became pregnant at age 38 I was about a size ten. After giving birth to my daughter, I have stayed at a size twelve if not a size fourteen.  I currently have very little discipline in the food and exercise realm largely in my own view because I feel I am reacting to years of over-exercising and over-dieting. 

So it is that my size in clothes has moved from a size 6 in high school to a size 14 in married life and after child-birth.  This continues to be a goal of mine to return again to size 12 through a combination of exercise and food monitoring.  However, it is something admittedly that until quite recently has fallen off the radar screen.  Some of this frustration and back-pedaling about eating and exercise may include the fact that meds are often associated with weight gain.  In my mind, I tell myself it is better to have an extra twenty pounds on while taking medicine than it is to be a at a model’s weight with little or no mental stability.  This is particularly true when I start to be honest with myself that fasting from breakfast time through lunchtime is associated with mood issues since blood sugar levels are not being addressed.

Thought for the day – resilience

I do not know if this is the experience of other people with bipolar disorder or clinical depression or other behavioral health diagnoses including addiction, but when I am in the midst of a high or a low, it feels like that state will never end. The mania is all consuming. The depression seems never ending. Yet invariably the high or the low does dissipate. Perhaps this is because I have found medication that is useful or perhaps I or my therapist have talked myself out of anxiety about this or that potential event occurring. In the past when I have had a low or a high that was not receptive to medications, I have felt like that high or that low would last forever. The mania is all consuming so that I am unable to think of anything else. The depression feels like it will go on interminably. The only silver lining in these episodes is the idea that “this too shall pass.” Invariably after medication (including trial and error with multiple meds) and/or therapy do take hold, I can see clearly that the mania was temporary as was the depression. So is it possible that those of us who are first-hand familiar with anxiety and/or depression are perhaps more familiar with the anxiety that surrounds us today perhaps because of our own mental health conditions? Do we go through each day with the knowledge and perhaps the mantra that “this too shall pass?” Can we be a reminder to each other through our words and our actions that whatever negative thoughts or feelings we are having, in time things will be looking up or at least be more manageable? Can we be a reminder to those unfamiliar with anxiety or depression that again “this too will pass?” Can we through it all be the face of resilience?