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.

 

 

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 Happens in A Support Group

A few months ago, a spokesperson for a “mental health advocacy organization” likened support groups to appendectomy patients performing surgery on one another. I said nothing at the time, but the remark and all the errors it entails have led me to consider how my support groups help me.

The claim that support groups seek to replace medical treatment is erroneous. DBSA South Orange County, like many other support groups of its kind, has issued a disclaimer indicating that our peer-run support groups are no substitute for a doctor’s care. This fact by itself defeats the glib assertion made above. We don’t try to cure people of their depression or their bipolar disorder. There are people with better skills for doing that than we.

What we offer is a safe place where people can talk about their struggles with the illness. Doctors and therapists know how to treat, but they don’t know what it is like to undergo treatment. They don’t encounter stigma. They have not experienced the catastrophic loss of community that can happen when one is diagnosed with a mental illness, when friends and family members run away.

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The Disease Didn’t Do It — You Did

Many people in bipolar support groups counsel the newly diagnosed not to feel shame for things they did while they were in episode: it was the disease that did it, not them is the reasoning. This cleaving of the self, I think, does not help us get a handle on the illness and its effects on others in our life. In fact, it strikes me as downright irresponsible: you never have to make amends for anything you did.

Denial of the damage we cause is linked to this exculpation due to mania. Some say that making amends has nothing to do with apologizing. Warped logic causes it to mean nothing more than admitting to yourself what you did without making restitution or apology to those we harmed while addicted or in the throes of mental illness. I find this cheap recovery and I am suspicious of anyone who flaunts it.
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Sandy Dumont R.I.P.

We lost one of our first and oldest members, Sandy Dumont, from an infection complicated by gastrointestinal issues and Parkinson’s. She came to us at our second meeting and stayed with us until just a few weeks before we lost her. Lynn and I visited her in the hospital and talked for a couple of hours about the years we had known each other and her plans for recovery. Her daughter Stephanie joined us on that Sunday afternoon only a few weeks ago. She kept us informed about Sandy’s progress as she entered a convalescence home and about the first onset of the infection. Stephanie is, as you might imagine, taking this very hard. Before I heard the news, I felt tired from a morning planting and dibbling at the Irvine Ranch Conservancy Native Seed Farm. The news put more weight on my shoulders and limbs as I made calls and posted notices in various places on the web.

Sandy saw our Monday night support group as a second family. The younger people in the group — and I include myself — listened to her stories about her shock treatments, her struggles with Parkinson’s, and her sojourns in various mental hospitals in the days before lithium let her go home. She had tried living without the meds and she was grateful, at last, for having them. Her admiration for her psychiatrist was immense. It was through him that she found us. We, in turn, took hope from her story and became convinced through her that we could have a life with this illness riding in our skulls.

I don’t know who will fill the chair to my right at Monday meetings. I leaned on Sandy not only to give great and timely feedback to those who needed it — she was no self-appointed pundit or expert on bipolar disorder but spoke only from her own experiences and insights — but to be my backup as Vice President of the chapter. She was a good judge of character who I relied on when deciding who to appoint to the Board, who to trust as a facilitator. There’s a hole that needs filling, one that isn’t just a position on a board of directors but also for a friend and confidant. I am not sure where to go now. She is already missed.

How About Using Another Disease Sometimes?

Every now and then, a well-meaning giver of feedback in a support group tells a distressed and uncertain newcomer that her illness is “just like diabetes”. You don’t think twice if you have to take Metformin or insulin to treat your condition goes the argument. So why balk at psych meds?

Just today I saw a writer in The Guardian put a slightly different twist on the analogy:

We wouldn’t accept misinformation about diabetes being widely circulated without correction so why should we allow it for bipolar and other mental health conditions?

I live with both bipolar disorder and Type 2 diabetes. Let me start out by saying that the treatment for the two diseases is alike in some ways and very different in others. It is true that I have to take medication for both. Exercise helps both conditions. But as a diabetic, I have to keep checking my blood sugar, test my toes for loss of sensation, and examine my feet for lesions that could lead to amputation. An optometrist checks my eyes every year for retinopathy. Eating right is critical. Diabetes is a chemical condition, but the story about bipolar disorder is more complicated than that despite what the pharmacy reps tell our doctors. So the analogy goes only so far.

If we want to concentrate on the medication angle and false information angle only, why use diabetes all the time? I have other comorbitities that require regular medications such as my heart condition which I treat with anti-cholesterol drugs and blood pressure pills. Thyroid conditions have more in common with bipolar disorder so why don’t we use these parallels? Vary the example. And be very aware of how diabetes and bipolar disorder aren’t alike and how our oversimplification of the root causes of bipolar disorder is wrong.

“Could it be the medication?” -My mom

My parents have always been against me being medicated. When I was 17 my dad refused to sign for me to have medication, so I had to wait till I was 18. And then I had to be financially supported by them, but my mom reluctantly agreed after a GI specialist told her I needed to see a psychiatrist (that’s a long story for another time)

Whenever I would say I feel [insert negative feeling here]. My mom would always reply, “Are you sure it’s not the medication.”

Well one night I came home from a support group. I didn’t have the willpower to eat with the group afterwards. I told my mom this as I shaking. I was stuttering. I leaned against a chair and told her I needed to eat because I hadn’t eaten all day (and plus, I only ate a couple grapes and stuff the day before).

I was having really bad anxiety, and anxiety doesn’t let me eat. It doesn’t let me eat until I feel sick and weak. It doesn’t let me eat until I am seeking professional help for the extreme weight loss. It doesn’t let me eat because when I try, I will vomit.

My mom started suggesting foods, I looked in the cabinet. And it came over me. Just the thought. 

I ran into the bathroom and my mom got up and followed me, “Oh Quinn.” It was her disapproving tone. It was as if she was saying, “Why are you letting yourself get so worked up over literally nothing?”

I thought she would understand because my dad has anxiety. But as it turns out, our anxiety is very different. He gets mad and he might overeat. I get withdrawn and I might vomit.

My stomach was empty, so I was spitting up bits of stomach acid. I was crying.

My mom held my hair back and asks me, “Do you think it could be the medicine you’re on?”

I laughed. In between my gagging and spitting, I laughed at her.

I bitterly spat some bile into the toilet and told her, “No, it couldn’t be.”

“How do you know?”

“Because I quit the meds.”

That was a changing point for her. When I was done, we sat down, and she gave me a piece of toast to munch on. I couldn’t eat the whole thing. But I told her the truth- I thought the medication (Zyprexa) was making me depressed- so I quit it. But as it turns out, the medication was the only thing holding my anxiety back. And quitting it cold turkey without a doctor’s supervision was very dumb of me.

It turned out to be a very symbolic moment. After I explained all this, she offered to go get the medicine for me, so I could take it right now. I nodded, told her where it was, and took it when she returned.

My anxiety levels went back to normal over the next day or so. But there was another occasion where she showed that maybe medication isn’t the worst thing for me.

During my recent manic episode, I told my mom I just could not take the increased dose of Zyprexa, I just couldn’t make myself do it (because part of me wanted to stay manic). I told her the doctor suggested I give the pills to her, and she could dose them out to me. But I hate when other people have control over my medications, as I feel I know better than they do, so I didn’t give her the meds. As a result, I only took the increased dose on two different occasions, and it made me very depressed. I felt bad walking into the psychiatrist’s office and explaining that I just couldn’t take that dose, I was manic (but I was unable to explain that part of me wanted to stay manic), and it made me too depressed to handle. Ultimately, I asked my psychiatrist just to put me on something new. And she did. And that’s what I’m working with right now.

Medication compliance is difficult for some people struggling with bipolar. Sometimes we think we are all better and quit them because, “We don’t need them anymore.” When in fact, it probably means the meds are working, and quitting them will just cause problems. In other cases, we are annoyed by a side effect or some other problem. We think we know better, but do we really?

I think it’s a lesson a lot of us learn the hard way.

-Quinn