Reminded of Algernon

Not sure what triggers so proceed with caution

I have 3 brothers and 2 sisters. I used to have 4 brothers. Pat passed away over 30 years ago. For a long time I didn’t speak about him. Everything upset me too much. I speak some now. But, it is I sad story and I don’t want to discourage people. Different times, different people.

Pat had a breakdown at 20 when he was at college. He came home a different person, first he would just stare. Then he was obviously mentally ill. He claimed he had been brainwashed by a cult,.he was also the soccer player Pele’ and other people. He was unpredictable and scared me. He would try to act ” normal” mimicking others, which was even worse. My father felt Pat could just stop it if he wanted and would yell and even hit him.

my father didn’t believe in mental health treatment and the only help my brother got was when he was picked up on 72 hour holds. They would give him typical antipsychotics, this was the late 70s, and send him home. He would be psychotic and sedated which just made his differences more apparent.

then, in 1985 he was picked up in a different county. They tried a different medication. lithium. Everyone told me he was back like his old self again. It was as close to a miracle as I could imagine. But, when I went to visit he wasn’t well. He was looking at me suspiciously. He was talking about the bible excessively and was hard to understand. My mother said they were having trouble finding the right dosage.of medication.

he took off that night. I never saw him again. He went to Yosemite. He fell at a large waterfall and died. Suicide or risky behavior? I am not sure.

I have all kinds of mixed up feelings. Mainly guilt. That I didn’t try to understand more and be closer and not so afraid, that I didn’t do more to get him some kind of help, that I am fine and he wasn’t.

and just sad that he was fine for a little while and then started to go back into the psychosis he had been trapped in for years.

(About how the title: my children were talking about ” Flowers for Algernon”. I know the story is about intellectual disability, but the idea of improving and then going back to the old state hit me as similar and sparked the memories)

 

How My Condition is Changing Over Time

I haven’t had the problem with side effects that others have had. Except for the weight. The fucking weight. I went to my endocrinologist the other day and learned that my A1C levels had gone down five points. Of course, I over-ate to celebrate, but the maddening thing is that my weight isn’t changing: I continue to hover between 250 and 260 pounds! We have no explanation for this, my doctor and I, but it is noted.

Damn the weight! The blame falls almost entirely on my Risperidone, an antypical anti-psychotic. My mood stabilizers are kind on this point, but my Risperdal has transformed me from a reed shaking in the wind to a baobab — a huge club of a tree that eats up city blocks in Africa. The other night I took a nearly nude selfie. My stomach stood out like a bump on an oak tree. I looked like I was heavily pregnant, ready to drop a cat or a foal. The hair on my belly spread out from my navel like grass on a tiny planet. But I have been rewarded with calmer moods, gentleness, and peace of mind. I’ll find a way to reduce the weight.

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.

 

 

Crossing Zones

Travel is one of the greatest dangers facing someone with bipolar disorder. The majority of medical evacuations from overseas happen when someone enters a manic or a psychotic state. I am no stranger to these issues: I have noticed that when I cross the country to attend DBSA conventions, the combination of the excitement of the convention and the messing up of my sleep cycles — especially when I am compelled to wake up earlier — often conspire to pushing me into a slightly manic and obnoxious state.

So when we made plans to visit my brother-in-law in Senegal, I took the time to confer with all my doctors but especially my GP and my psychiatrist. In addition to the necessary shots such as typhoid and yellow fever, we bought medical evacuation insurance for me. I also discussed my plans at length with my psychiatrist, particularly since I would find myself not merely in one different timezone, but four — Salt Lake City, Paris, London, and Dakar. Together, we hatched out a plan which involved my taking an extra tablet of carbamazepine while I was gone. Two days before my departure, I began taking the increased dose — two first thing in the morning, one with dinner, and one at bedtime.

Not even the hint of mania afflicted me. I kept my temper, didn’t laugh too much, kept my bearings, and didn’t engage in compulsive spending. We stuck to our plan in London and Paris, not doing too much in a day and always discussing our expenses as we went along.

When I came back, I felt so good on the new dose — who in their right mind misses the rages? — I asked my psychiatrist if I could stay at that dose. She let me under the condition that my drug and white blood cell levels were closely monitored at least in the beginning to be sure that they didn’t destabilize me. Four months after my trip, I continue to do well.

If you live with bipolar disorder, you can learn this from my trip. First, talk to your psychiatrist and consider raising your dosages of your mood stabilizer. Second, take pains to adjust your sleeping schedule. For two weeks before I left, I starting setting my going to bed time an hour ahead of when I usually woke until I was getting up at Paris time, about mid-afternoon. When I arrived at Orly, I felt fine. When we arrived in London that evening, I went right to sleep and woke up shortly after dawn. I wore a sleep mask and ear plugs to minimize disturbances. I used an alarm clock to wake myself and it worked. I jumped out of bed and I enjoyed each day. My regimen kept my mind stable. My sanity never wobbled.

What could go wrong?

FDA asked to consider adherence sensor on Abilify

http://www.modernhealthcare.com/article/20150910/NEWS/150919997

http://www.proteus.com/press-releases/u-s-fda-accepts-first-digital-medicine-new-drug-application-for-otsuka-and-proteus-digital-health/

Proteus Health, located in Redwood City CA, along with Tokyo based Otsuka Pharmaceutical Co. have a new drug application that is ready for review by regulators determined by the FDA.

The new drug is embedded with an ingestible sensor. When the medication, and sensor, reach the stomach, it sends a signal to a patch the patient wears externally. The information can be sent to physicians or caregivers with consent.

The sensor has previously been approved in a placebo taken along with a medication.

The goal is to help with medication compliance. All well and good up to this point. But, what is the first drug they choose? Abilify, an atypical anti-psychotic. It isn’t always taken for psychosis. It can be used as an add-on for depression and other ways. But, it is also used to treat psychosis.

Some, not uncommon, delusions are that:

you have sensors embedded, that your medicine has been poisoned or tampered with or that people are tracking you. This is to be taken by consent, but personally, I think they chose a bad medication.

I don’t know what is wrong with injectable abilify? That would be my choice.

 

Low-Grade Depression?

I have been trying to discern if I have been in a low grade depression or not. It can be tough to recognize these borderlands. The signs can be subtle. While I do not have negative thoughts coming at me and trying to carry me off on the backs of lemmings flooding over a cliff, I have found it harder to complete tasks and sleep less than 11 hours a day. If I am not in a depression, I am very near one, I think.

Two things in particular seem to be helping at this point. The first is my Vyvanse. The second is exercise. Vyvanse is known for raising people out of funks. Exercise is a remedy that I have used for a long time. But it only helps when I am gasping at the surface of that great ocean of drowning. So if I am down, it is not very far.

Tiered healthcare system U.S.

You get what you (can) pay for

I don’t know enough about the intricacies of our healthcare system to give a explanation on how they different insurances work and why some people fall between the cracks.  I just have been in or visited facilities that didn’t require private insurance and they are night and day from ones that my employer provided insurance covers.

My first hospital stay was after I had refused to get back in the car during a road trip. I ran to a mini-mart and asked the clerk to keep my parents from me. He let me stay there and called the police. I thought they would call my husband or sister to come get me. I guess it would take too long. The officer handled it well. He kept my parents seperate from me and listened to both of us. They he had me go into an ambulance to got to a hospital.

The hospital they took me to was a County hospital. I wouldn’t recommend it. I was confused. I wouldn’t speak and then blurt things out. They pushed a cart in the room with juices and yogurt. I wasn’t sure what to do, but I soon learned to take what I needed. There was a room full of cots. I would go and lay down on a cot. At night one of the other patients helped me find the linens and make a bed. I had been lying in the cold.
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Ran out of meds… and very scared.

So we all know quitting your meds cold turkey is a very bad idea. But sometimes… things happen.

I wasn’t really paying much attention to how many meds I had. I knew I saw my psychiatrist and would get a prescription and then the mail order pharmacy would send it to me (they’re much cheaper- 3 months for the cost of 1- and they’re authentic). However, I ran out early. I called my psychiatrist to have her fax a 1 month prescription to my pharmacy but when I got there they said my insurance had already covered this month through the mail order service. In other words- I’d have to pay out of pocket.

1 pill costs $12. And I take 2 a day.

I called my mom asking how long it’d be before we’d get the pills in the mail. And she said it won’t be for at least a few more days. The service had emailed us saying that the medications were “delayed.” But when I demanded to know what that meant, she simply sent me the email. All the email said was that it was delayed. That was it. No hint as to how delayed, nothing.

I left the pharmacy holding back tears. I guess I was going off my meds for a few days, with no tapering.

When I got home I broke down sobbing. My mom called me back about it and then asked if I was crying, when I said yes because “you don’t know what this is going to be like” she yelled at me saying I shouldn’t put this stuff off for so long.

She later apologized.

And yes I am terrified. When I forgot my pills one night I almost killed myself. Although when I found out I felt that way only because I forgot my pills, I cried with relief.

I take 2 anti-psychotics. Luckily this is less important one. My main one keeps a lot of symptoms under control- mania, anxiety, etc. This one just keeps me from being depressed. It actually made me feel like a normal type of stable. Generally I was in a good mood, instead of my normal slightly-down mood.

I am scared of having to endure the next few days until I get the medicine. We are going to call the service tomorrow and ask them to expedite it, it costs money but it is literally less than paying for one days worth of the medication.

I will survive. But it will be hell.

And I am scared.

-Quinn

The Progress of My ADD Treatment

Diagnoses come to me long after the illnesses have wrecked my life. I received the label of “Attention Deficit Disorder” a few months back when I asked to be evaluated for it. My psychologist passed the information on to my psychiatrist who put me on Vyvanse.

I like to say that my mood-stabilizers put down a floor that allowed me to put up a house based on healthy changes in my life. Vyvanse created doors and windows that let air and light into the rooms.

The effect of the medication was apparent on the first day. I accomplished many tasks that I had been putting off and kept the motivation going for the rest of the week. When I started running out of things, I looked around the condo and found others to do. I compiled a list of future projects.

One by one, I checked them off and added more.

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Twelve Myths About Bipolar Disorder

I have to rebut these when they are said by family members, fellow patients, and random members of the public. Every one of us who lives with the condition has heard some if not all of these time and again. You might even have a few of your own to add. You may note that I don’t include “It’s all in your head” (though the issue of faking is covered below). It is all in my head! Bipolar disorder is an organic brain dysfunction and the brain resides inside my skull. So I don’t count that a myth, just a misapprehension of the truth.

Here are my twelve most common myths:

Bipolar disorder is just something psychiatrists made up so that they can get rich.

Not too long ago, a Fox Radio commentator told a caller that she had been duped by her psychiatrist. They just made it up to get your money, he told her. She begged to differ but he was having none of it. Even when he was forced by his employer to apologize, he equivocated.

There are a few things wrong with this belief. The first any person with bipolar disorder can tell you: the highs, the lows, the paranoia, the hallucinations, and the delusions are all too real. Physicians have observed the disease in patients since the time of Hippocrates. And patients have suffered, suffered mightily.

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