Turning to others

It’s hard for me to get the words out when I’m having a rough time. I can be pretty vague. I don’t know who to confide in about my symptoms and feelings. I don’t want to be a bother. Some people will offer platitudes or react more than is needed. I have to trust someone to keep things confidential and hope they will not dismiss me.

I was traveling recently and started having a few breakthrough psychotic symptoms. I didn’t even want to talk to my husband about them. It just takes a lot of effort and it never seemed like a good time.

I contacted a talk line and they told me to think “positive thoughts” and that negative things happen when you think negatively. I am not sure what I was looking for; maybe some reassurance I could see how things go over the next couple of days. Whatever it was, positive thinking wasn’t helpful for me. I think it was just some of the stress of traveling because the symptoms stopped on their own.

So, if I do turn to you, it means I trust you. Not that I expect you to have all the answers. But I do need you to listen. Sometimes talking doesn’t help. Other times, I just need someone to reassure me I will get through it.

The Day of My Diagnosis

This is the text of a speech I delivered on September 22, 2016

Twenty two years ago, when I was almost thirty six, I woke up one morning and said “Lynn, I’m sick.”. I had been in bed for weeks. I’d lost my appetite. We made an appointment with the psychiatric department at Kaiser Redwood City and by the end of the following week I was on Prozac.

Prozac was amazing stuff: I was cured the next day. My psychiatrist was surprised but because i had never told him about my other symptoms — the irritability, the paranoia, the rapid speech, that time in college when i had gone up to San Francisco with my girlfriend and come back with my girlfriend and they were two different people — he let things be. In time, our insurance changed, so I came under the care of a nice gentleman in Menlo Park who also had no clue about my other symptoms so he made no changes. Then we moved down here and I found a new psychiatrist who also made no changes because I never told her about my other symptoms either.

Then one day the Prozac stopped working, so she changed me over to Effexor. I found myself in a burning darkness. Two things happened. First, an editor was taking forever to get back to me on a story. Second, I overheard Lynn saying something about me to her sister. My irritability merged with my despair. I went for a walk in Whiting Ranch, called a friend — who found my anxiety funny for some reason. So I texted my last will and testament to Lynn, making special note to leave some possessions of my father to my nephew and asking her to be sure to be sure to get my poetry published after my death. Then I sat down on a sycamore log, studied my veins, and prepared to bread my glasses.

My cell phone rang. It was my psychiatrist. “Are you all right?”.

“No,” I whimpered. She told me to go down to South Coast Medical Center. Lynn picked me up and drove me to Laguna Beach

After spending several hours in the emergency room getting my chest x-rayed because I was wheezing, they took me down to the behavioral unit where I left Lynn at the door. They took away my shoelaces and my glasses, then showed me my room.

I came out after an hour. “I am diabetic,” I yelled. “I need my blood sugar medicine!” I can only imagine what was going through their minds — “this guy was brought here because he was preparing to commit suicide and now he wants the medicine her takes to keep himself alive” — but I am sure they took careful notes.

The next day when i went to group i was the happiest person there. Everyone was miserable except for me who was laughing at the fact that he had attempted suicide and lived to tell about it.

After group, I waited around until I was called into a consulting room. A psychiatrist joined me there. He took a few minutes to read over the notes the ER doctor and the nurses had made. Then he looked at me and asked in a very gentle voice “Had anyone ever told you that you were bipolar?”

And that is when my recovery began.

Conference of DBSA California, 2016

I have just returned from the conference of the Depression and Bipolar Support Alliance of California. Between keynote addresses and workshops, here are the things I attended (for some, I have notes).

Keynote speaker for Friday morning, stand up comic David Granirer, on “I’m OK But YOU Need Professional Help: Creating Recovery – One Laugh At A Time!” For obvious reasons, I didn’t take notes for this one.

Adult Suicide Prevention Training (presenter Liam Mina, MSW): Liam Mina is a social worker with Didi Hirsch, a Southern California organization founded in 1942, which works on suicide prevention. After the death of Marilyn Monroe, in which they were involved in a “psychological autopsy,” they started getting phone calls, not about Monroe, but from people who themselves wanted help. So they established the first suicide hotline in the US. Now they have 24/7 service in English and Spanish, along with texting and chat for the deaf, and Korean and Vietnamese from 4:30 pm to midnight Pacific time. 90% of suicide is associated with mental illness, but 50% are not in treatment. Responding to warning signs of suicide: Build rapport, assess risk (ask directly, and for people who do say that they are thinking about suicide assess degree of risk by asking about plans and with scaling questions), establish safety (make a plan, connect to resources, ask to repeat back plan).

Ask the Pros: Kent Layton and Himasiri Da Silva. This always popular session allows people to pose questions to a clinical psychologist (Layton) and a psychiatrist (Da Silva). Topics included what to do in a crisis, what to do if you’re allergic to all the meds, what are the effects of different strains of marijuana, the difference between ADHD or ADD and bipolar disorder, whether ketamine is recommended for treatment-resistant depression (and the same question for Lexapro), what about food supplements, and the DSM-V.  A few notes from the answers: Medical marijuana isn’t recommended for bipolar disorder. Useful supplements include fish oil (omega-3) and folic acid (not in place of medication, but alongside it). Da Silva feels that the DSM needs to build in more bioevidence; bipolar disorder had a large genetic component. As time goes on the DSM will become more biologically and evidence based. If you’re in crisis, keep showing up and suiting up, get up even if you can only manage a walk around the block, and don’t give up even if getting your meds right takes trial and error.

Bipolar Disorder: A Family Affair (presenter Angela Paccini): I didn’t take many notes on this one. It focused a lot on family stories, in the interest of showing what knowing roles and triggers and providing support looks like.

Bipolar Disorder – The Future (presented Da Silva): There have been four eras in psychiatry: The Asylum Era, the Psychodynamic Era, the Psychopharmacology Era, and what we are now entering, the Molecular Neurobiology Era. We still draw on what was learned in earlier eras (e.g. psychotherapy, especially CBT and DBT, helps, as do medications developed in the psychopharmacology era), but a new improvement in treatment is our understanding of pharmacokinetics and pharmacodynamics. Medications don’t provide chemicals in the form effective in the brain; first they need to be processed by the liver. Here, pharmacokinetic genes, such as CYP450, are important. The CYP450 system involves 57 enzymes responsible for drug metabolism, primarily in the liver. People can be normal, fast, or slow metabolizers, and a genetic test can show which you are. For example, only 55% of people metabolize Seroquel normally, while others metabolize faster than normal (and therefore see less effect) or slower than normal (and therefore see more side effects). Medication interactions are important (for instance, the estrogen in birth control pills can speed up the breakdown process for Lamictal). So is folate, and some people, with a variant form of the MTHFR gene, lack the ability to metabolize folate and may need, instead, to take methylfolate. Genesight offers genetic testing. Da Silva also talked about evidence based practices governing which medications should be given first (ones for which there are large scale studies supporting efficacy and few side effects).

Saturday morning keynote speaker: Antoinette Brunasso spoke on Coping with Depression and Bipolar Disorder: The Impact on Self and Family. This was a very good talk, at a level easy for a lay person to understand, largely around developing what Brunasso calls a “solid, flexible sense of self,” one that allows you to tolerate anxiety, and avoid reacting to conflict by reflexively caving, avoiding, or locking in your position, but rather work through the conflict toward a solution that works for both partners. How “fusion” can lead a spouse to get stuck in the same place as the bipolar or depressed spouse, and how developing a healthier sense of self can help you work through marital conflicts better even when one of you is also dealing with mental illness.

Reflective Functioning and Mentalization in Relation to Bipolar Disorder (presenter Nazare Magaz): Mentalizing is the capacity to imagine inner states in self and others. It can be affected by your early attachment process, which can lead either to secure attachment or to less secure forms (anxious avoidant, anxious preoccupied, disorganized); if you are a therapist, both knowing your own attachment style and recognizing that of your patient can be useful (don’t crowd someone whose attachment style is anxious avoidant). In bipolar disorder, ability to mentalize drops when you go into episode. Signs of mentalizing: You can imagine multiple states of mind that could lead another person to behave as he or she does. If you can only think of one possibility, you may be falling out of the open, curious state you need to mentalize, and instead in a place of psychic equivalence, where you have a thought about what another person is thinking and then assume it’s true. What do you do when someone else is in a place of psychic equivalence? You need to empathize with that person first. How do you develop mentalizing ability? By being around and learning from people who have it.

Lunchtime keynote speaker: David Miklowitz, on Child and Adolescent Mood Disorders. I didn’t take notes on this one, because having notepaper around a lunch table is awkward, but I did live tweet some of it after I had eaten.

Happiness with music (presenter Mike Sullivan): We played ukeleles. I didn’t take notes.

Trauma Effects – Depression and Bipolar (presenter Christine Monroe): Trauma is always part of psychotherapy. It’s part of life. This talk covered: What is trauma? How does PTSD compare to bipolar disorder (e.g. flashbacks to traumatic event compared to depressive ruminating)? What events can lead to PTSD? What puts people at risk? References: Ross Rosenberg on trauma levels. Dan Siegel on parenting. Evidence based treatments: Trauma focused CBT, exposure therapy (start mild), relational therapy, and, a particularly good therapy for PTSD, EMDR.

And that was my last workshop. I condensed my notes a lot for this post, so I may, if I find time, have a longer post on one or another of the individual sessions.

 

 

No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

Jargon

Maybe we are so accustomed to familiar jargon, we don’t recognize symptoms if they are described in other ways.

I was having some symptoms. I have been doing well for a long time and they frightened me. I was hearing my voice (not a hallucination) but it was repeating the same words over and over. Nothing scary, more like I was rehearsing lines.

I was also starting to mumble the words I was saying. I found that listening to music was good because I started saying the song lyrics and that was better.

I would try to explain this to friends, hoping they would sympathize, and maybe give me some tips to deal with it. Instead they would say things like, “Oh, I’ve done that before” and shrug it off like it was no big deal or “Maybe you are talking to yourself because you are lonely”.

Instead of helping I ended up frustrated, leaving wanting to bang my head against a wall. It was hard. I knew they were trying to be helpful and maybe normalize my experience, but I found it invalidating.

And the more anxious I would get, the worse the symptoms would get, the more anxious I would get and it snowballed. My psychiatrist seemed to understand what I meant and made some changes to my medication. Now, it is getting better and I am getting calmer and it gets better and the snowball melts.

Recently I saw another friend. I told her I hadn’t been doing well, some thoughts. She said “racing thoughts?” I thought, that is the closest thing to what I am trying to describe, so I said “yes”. Finally I found a friend who could somewhat understand.

Words Have Power

Words have power. They can hurt but they can also heal.

This is something I read and modified from the dbsalliance website. I also made a youtube video

People living with mental illnesses often experience symptoms like feeling hopeless, empty or worthless. You may want to say something to make the person feel better, but not know what to say. Are there comments you should avoid?

If your loved one is experiencing ongoing thoughts of suicide or is in immediate danger, contact a doctor, got to a hospital emergency room, or call the National Suicide Prevention Lifeline at
1-800-273-TALK (8255)

Remember to take care of yourself so you are able to be there for your loved one. Find support for yourself with understanding friends or relatives or in therapy of your own.

As a friend or family member of someone with a mental illness your support is an important part of working toward wellness. Don’t give up hope.

Treatment for mental illness does work, and people with mental illnesses can and do live productive and thriving lives.

What you say

Some things could be hurtful:

It’s all in your head

We all go through times like this
Look on the bright side
You have so much to live for
What do you want me to do? I can’t change your situation
Just snap out of it
You’ll be fine. Stop worrying

What could help:

I understand you have a real illness and that’s what causes these thoughts/feelings
I may not be able to understand exactly how you feel but I care about you and want to help
When you want to give up, tell yourself you will hold on for just one day, hour, minute-whatever you can manage
You are important to me. Your life is important to me.
Tell me what I can do now to help you
You might not believe it now, but the way you’re feeling will change.

Review: Clinical Psychopharmacology made ridiculously simple

I am not the target audience for this book.

The book is written for primary physicians who find themselves in the position of prescribing psychiatric medications. That purpose can be seen in the distinctions drawn, throughout, between the sorts of psychiatric conditions that can be managed by a primary physician (such as prescribing antidepressants) and those for which referral to a psychiatrist is recommended (such as psychotic depression).

Still, though the book isn’t written for patients or family members as such, its clear, simple presentation makes it a useful reference for those patients and family members who want to get informed about their medications. We purchased a copy to bring to our support group meetings as a reference.

The book is divided into chapters that cover different conditions (e.g. bipolar disorder) or topics (e.g. enhancing medication adherence). There are tables showing the clinical mechanisms and dosages of different medications, decision charts for selecting the appropriate medication for a condition, and descriptions of how psychiatrists decide on their treatments, from when someone with depression may get referred for therapy alone and when medication is needed, to which medications are appropriate for which symptoms. Case studies discuss how a psychiatrist may adjust treatment depending on the response of the patient.

It’s a good book that can help take some of the mystery out of why your psychiatrist may be making the decisions he or she is making.

 

World Bipolar Day

Today is March 30. It was Van Gogh’s birthday. It is also world bipolar day. A day to bring awareness to decrease stigma and not feel alone.

I haven’t done much this year. I tweeted on the hashtag #worldbipolarday a picture of me I have used in the past, with a list of other things about me than my diagnosis.

I am facilitating a DBSA group today. It seems appropriate.

What Does it Take to Make a Diagnosis?

There are a couple of people who sometimes respond to my threads who don’t like it when I say we shouldn’t be calling people mentally ill just because we don’t like them or act in ways that we don’t like. I think it is time for me to outline what is required to make a diagnosis:

  • You have to be trained as a psychiatrist or a clinical psychologist. (Most “experts” or the “peanut crunching crowd” are not.)
  • You have to have actually examined the person. This goes beyond watching them on television or reading about them in magazines or newspapers.
  • You have to use proper diagnostic criteria.
  • You must be neutral. Most of the pseudo-diagnoses that I have seen fail magnificently on this score. In my experience, progressives are the worst, but this does not exonerate others including conservatives.
  • You must have the patient’s welfare in mind, not an opportunity to insult.
  • You must avoid stigmatizing people with mental illness who are not anything like the person you are diagnosing. E.g. By saying that terrorists are mentally ill, you are implying that people who are mentally ill are like terrorists. (Research shows that people with mental illness are less likely to be violent than the normal population.