Complementary Treatments for Migraine

I’ve written here before about migraines.  Grace was plagued by migraines during the prodromal phase of the disease onset (that feels like a redundancy).  Migraines are the bane of my existence.  My neurologist jumps through whatever hoops neurologists jump through in order to try to keep mine in check.  I have a “migraineur’s brain” meaning that I have T2 lesions on my brain that show up on an MRI.  Migraines cause lesions on the brain.  Scary thought.  Neurologists call it “scar tissue”.  I don’t know about you, but I don’t want scar tissue on my brain.  I don’t want Grace having scar tissue on her brain.

What can we migraineurs do about it?

I’m on a shit ton of medication which works prophylactically to prevent migraines, and, even though I still get them, it works 50% of the time in a bad month when stress is sky high and 75% when life is holding.  That’s not bad.


Could it be better? Sh’yeah!

I have reached a somewhat desperate state.  I went to the emergency room at 2 AM this morning because my migraine was beyond self-help.  It was at a 9 or 10 on the pain scale, and, once the barfing starts, it won’t stop.  The good people of my local ER were on it, and I was home by 5:30 AM sans any pain at all.

This is no way to live.  So, if you live with chronic migraine disease, what can you do? My neurologist puts me on prednisone from time to time in an attempt to arrest a migraine that might feel like sticking around.  That didn’t work this time.  I’m on prednisone now, and that is not a drug one wants to be on.  Side effects, anyone?

Let’s talk about an alternative treatment.  Butterbur and feverfew.

In 2012, the American Academy of Neurology (AAN) updated its guidelines on migraine prevention to include complementary treatments. Based on reviews of clinical studies, the AAN recommends:

  • Butterbur (Petasites hybridus). Butterbur is a traditional herbal remedy used for many types of ailments, including migraine. The AAN considers butterbur “effective” and recommends it be offered for migraine prevention. Butterbur was the only non-drug treatment ranked by the AAN as having the highest proof of evidence (Level A) for effectiveness. Butterbur may cause an allergic reaction in people who are sensitive to ragweed and related plants.
  • Feverfew. Feverfew is another well-studied herbal remedy for headaches. The AAN ranks feverfew as “probably effective” (Level B evidence) and recommends that it be considered for migraine prevention. Pregnant women should not take this herb as it may potentially harm the fetus.
  • Riboflavin (Vitamin B2) and Magnesium. Riboflavin and magnesium are the two vitamin and mineral supplments ranked by the AAN as “probably effective”. Vitamin B2 is generally safe, although some people taking high doses develop diarrhea. Magnesium helps relax blood vessels. Some studies have reported a higher rate of magnesium deficiencies in some patients with migraine..

German doctors have been using butterbur as a prophylactic treatment for migraine with great success since the 1980s.  It is a widely recommended and known treatment in Germany and other European countries.  My neurologist may not know about this nor has she recommended magnesium to me.  She has recommended vitamin D due to low vitamin D levels being linked to inflammation.

The thing to note about butterbur is a pesky alkaloid that is toxic to your liver–pyrrolizidine alkaloids.  They are indicated on butterbur supplements as PA, and all butterbur supplements should say “PA-free”.  I note this because there was a change in a German company’s manufacturing process a few years ago, and their butterbur supplement, Petadolex, suddenly became contaminated with those pesky alkaloids.  A review and subsequent testing of the supplement revealed that the hepatoxic alkaloid compounds were still present in the supplement, and Germany removed the supplement from the market; Switzerland banned the sale of all butterbur supplements altogether.  There are, however, other companies that produce butterbur supplements other than Weber and Weber, the German-based company who failed the investigation.  Oddly enough, you can still buy Weber and Weber’s butterbur supplement on Amazon, so beware.

This is a case of throwing out the baby with the bathwater (Switzerland, I am talking to you).  Everyone in the know is aware of hepatoxic alkaloids in butterbur.  Why the American Headache Society is attempting to formulate a stance on it is beyond me unless it just doesn’t want anyone taking butterbur at all to prevent litigious action.  In the end, you need to be smart.  If our doctors have us taking a plethora of drugs in an attempt to manage our pain, then why not look at butterbur as well? Have you read the side effects of these anticonvulsants, steroids, and triptans? Nothing is very good here.

In the meantime, here is an excellent butterbur supplement that is PA-free and also contains feverfew and magnesium.  It’s wheat-free, gluten-free, and even vegetarian.

Do some research for yourself if you struggle with migraines.  There are complementary treatments.  Sometimes we have to be the ones to find them.

Further Reading:

Preventing Migraine Pain with Butterbur (great article)

Migraine Preventative Butterbur has Safety Concerns



Possible Etiology of Schizophrenia

I’ve posted quite a few scholarly articles on mental health, in part, because it’s cool.  I like to know what’s going on in the body and what current research is being done.  I have two other reasons.  Wouldn’t it be great to know why people aren’t feeling well mentally (etiology) and, hence, remove the stigma?

How much stigma is around dementia and early-onset Alzheimer’s? Behaviorally speaking, it looks a lot like a brain-based mental disorder.  Why? Brain-based mental disorders and Alzheimer’s both involve the brain becoming “ill”.  We don’t see adults on television shows saying things like, “Oh, that old person is so crazy! They got dementia! Let’s just lock ’em up in the Looney Bin for the Aged.” I’m not at all implying that ageism is not a problem in American society.  The elderly are not treated with nearly as much respect as they deserve.  What I am saying, however, is that certain brain-based diseases are widely accepted by the general public as legitimate illnesses requiring medical intervention.  It’s even generally understood that those diseases affect other parts of the body, in large part, because the disease in question began in the brain.

So, if one were to see an older person engaging in odd behaviors in public, one doesn’t usually jump to conclusions and say things like, “That person must be high.”  No.  More often than not, members of the general public will say, “I wonder if that person has dementia.  Do they need help?”  Even if someone is relatively uneducated, the notion of dementia is so well-known that I’ve heard people say things like, “Oh, does that person have that thing that elderly people get where their brain starts to go? I hope I never get that.  I don’t want to die like that.”  There is a general awareness that a brain-based illness exists in the elderly population and that a brain-based illness can manifest as odd behaviors.  The age of the person is what provides the context.  Also, rarely are people afraid of the elderly so fear is not present to drive judgment.

For those of us in the know, we are fully aware that bipolar and schizophrenia spectrum disorders are biologically-based brain disorders.  One can liken schizophrenia to Multiple Sclerosis in terms of how it originates in the brain and goes on to affect the entire person.  There have been many theories suggested over the years as to the possible etiology of the disease.  Personally, I’ve liked the theory around pruning because it was the only one that adequately explained the loss of white matter in the brain.  When I tell people what happens to the brain of someone with schizophrenia, they are usually shocked.  The loss of white matter and neural connections is what is causing most of the positive, negative, and cognitive symptoms.  This is indeed a neurodegenerative disease.  Once someone fully understands the disease process of schizophrenia, they usually feel less inclined to stigmatize people who carry that diagnosis much like they don’t stigmatize a person with MS or Parkinson’s disease.

Here is a new landmark study to help you in your efforts to educate yourself and others on the possible etiology of schizophrenia.  Yes! That’s right.  The etiology. In short, it’s a pruning problem.

Schizophrenia risk from complex variation of complement component 4

If you don’t feel like wading through this study, then Gizmodo succinctly summarized the study in layman’s terms here:

Scientists Have Finally Found a Biological Process behind Schizophrenia

Here’s a snippet:

“On the surface, the culprit behind schizophrenia sounds a bit odd. It’s a variant in the major histocompatibility complex (MHC)—a set of proteins that decorate the surface of your cells—that binds to foreign molecules and presents them to the immune system. But McCarroll’s new study, which looked at the DNA of nearly 29,000 individuals with schizophrenia and 36,000 without, showed that this particular MHC variant causes the expression of a gene known as C4 to go into overdrive.

And it so happens that C4 is present at neuronal synapses, the connections between neurons that transfer chemical and electrical signals in your brain. On a cellular level, too much C4 can reduce the number of synaptic connections, a process known as “synaptic pruning.” On a human-scale, this can lead to schizophrenia.”

There you have it.  The more educated we are about the etiology behind mental illness, the more we can educate others, thusly, removing the stigma and bringing the general public up to speed.  If other neurodegenerative diseases are acceptable and not stigmatized, then biologically-based brain disorders like schizophrenia and bipolar disorder should be found among them.  It just takes education.

A lot of education.

The Imaginary Audience

Happy 2016, one and all! I feel like asking, “How are you?” And, I hope that some of you tell me!

I have been adjusting to life as a single parent, and I have to admit that it is exhausting not to mention the Groundhog Day Effect.  I clean one room, leave it, return to it, and find that it looks just like it did before I cleaned it–all within the space of ten minutes.  So, my days are starting to feel just like Bill Murray’s in the film “Groundhog Day”.  Interminable sameness.  “Didn’t I just pick up this exact piece of paper from this exact spot yesterday?” No.  Am I losing my grasp on reality? No.  Have I bridged the space/time continuum? No.

What is going on then?

The answer? I have three daughters at home, and they don’t observe a lot outside of K-Pop, manga, their insatiable desire for savory snacks, and their obsessions du jour.  Okay, okay, there are other things going on as well, but you get the picture.  I will admit that relaxing into it seems to be the way to go.  I’m not pushing the river, so to speak, when it comes to the culture at home.  With the atmospheric oppression lifted, I have wanted to see how the girls would expand in their own right.  What might evolve in terms of family culture in our home? Doireann is living on campus now so the home dynamic has changed.  Everyone living at home carries a DSM diagnosis.  We have three biologically-based brain disorders at play.  What might emerge?

The first thing that happened was a kind of collective deep breath followed by the predictable release of emotions.  Everyone had been walking on eggshells around my ex-husband (their father).  No one knew any peace in the home due to fear.  When safety and predictability were finally established, everyone freaked out.  We had crying jags, externalized emotional expressions of fear, anger, confusion, and expression for the sake of expression.  Just because they could.  There was an outpouring of verbal expression that sounded a lot like hatred: “I hate him!”  It’s rooted in feelings of betrayal, confusion, and profound emotional pain.  There was a month, after he moved out, in which the girls refused to see him.  To his credit, he did not push them.  Doireann, however, has cut him out of her life.  She has her reasons, and they are valid.  This is her journey now.  She is almost 19 (can you believe that?).

Grace began high school, and Milly began middle school so the school year, in a word, has sucked.  They are, however, developing resiliency, and that is what I have wanted for them.  It is difficult as a parent to watch our kids swim through the shark tanks of both middle and high school.  We remember what it was like.  I’ve only met one person in my entire life who liked high school.  No one looks back on middle school fondly.  It seems that everyone turns feral during that time in adolescence.  Instinctively, I would spare them that particular suffering, but, at the same time, how will they find out what they’re made of? To quote T.S. Eliot, “If you aren’t in over your head, how do you know how tall you are?” For those of us with children with mental health issues, we walk a very fine line when it comes to helping our children develop resiliency because we are never sure of what their tipping point is.  On a good day, they can handle a lot.  On a bad day, they can’t.  And, there is no predicting in the morning if a day will be good or bad in terms of their ability to cope.

Yesterday, for example, Milly seemed okay.  I have to drive fifteen miles to her school as she is open-enrolled in another district.  We leave early so that we can hold to our morning tradition of stopping at the Caribou Coffee across the street from the school.  I get coffee, and she used her allowance to buy a drink of her choice.  Yesterday, she chose hot chocolate.

It is worth noting for the sake of this story that when Milly was younger she would never speak in public.  She would hold onto my legs and hide behind me.  Sometimes, when I would walk, she would slip down my legs, and it would look like I was dragging her behind me.  Oh, the looks I got! She was terrified.  She was almost agoraphobic.  She is on the autism spectrum (what the DSM-IV labeled as Asperger’s Syndrome), and she has an anxiety disorder as well as a depressive disorder.  Co-morbid to this are sensory processing issues.  Milly has always been the way she is.  From Day 1.  And, she has been receiving countless kinds of interventions since she was a toddler to bring her to a place of functionality.

Yesterday, however, she marched up to the counter, ordered her drink, paid for it, and sat down at our chosen table–just like a neurotypical kid.  I almost take it for granted now.  She was talking to me about a documentary that she had watched; she is really into documentaries: “Mom, some of these documentaries are hard to watch, but I think that it is our responsibility as people to know the truth about what is happening in the world.  It is important, and part of that is feeling uncomfortable.  I feel a responsibility to know so that I can help.”  My 12 year-old said this to me! I was amazed.  As she was sharing this, she knocked her drink over, and it splashed all over her pants.

Time slowed.  I saw her face.  Her eyes widened.  She was frozen.  Tears started.  She couldn’t move or respond.  Her diagnoses came to the forefront.  I wasn’t dealing with Milly anymore.  Hello, Anxiety.  Hello, Depression.  Hello, Autism.  She was enveloped in them.  And, this was the moment to talk to her rather than try to save her.  If I could reach her, then I could get some neurons to fire.  “Hey, hey, it’s okay.  It’s just a drink.  I need you to stand up and go ask for a rag.  This isn’t a big deal.  Can you move?”  She couldn’t.  She was using all her emotional energy to hold it together.  “Can we leave? Can we leave? Can we leave? I wanna go home.  I wanna go home.”

Suddenly, a woman appeared with napkins.  “I saw what happened.  You clearly need help.”  She looked at Milly with kindness, and then she looked at me judgmentally as if I wasn’t helping my daughter.  I wasn’t helping her in a way that she would help.  I am accustomed to this.  I have developed some shame resiliency.  I thanked her and got up to ask for help.  Another person had already intervened on our behalf and a barista was on her way over.  Milly was able to stand up, but she was trembling.  Her bottom lip was quivering.  She ran to the door and stood there.  She was ready to bolt.  The barista cleaned up the table and chair, and I sat down.  I motioned for Milly to return, but she shook her head at me.  I mouthed, “Come here please,” and she slowly returned.  Her pants were indeed saturated with hot chocolate.  She could not go to school like that.

“Everyone is staring at me!” she said quietly starting to cry.

“Here is a secret,” I said.  “No one really cares what you are doing.  If you take care of what you are doing and carry on as if nothing worth looking at happened, then people won’t care either.  But, when you sit there in your chair frozen and rigid, refuse to help yourself, and run across the store to stand by the door, then people will stare.  Those are unusual behaviors, and people stare at unusual behaviors.”  She was able to hear that.  She made her “thinking face”.

“Oh,” she said, “so if I act like nothing happened even though it’s so hard, then people won’t really stare that much?”  she asked.

“For the most part, yes.” I answered.

“But, there was a group of kids staring at me,” she said pointing directly at them.

And, here we landed on the Imaginary Audience.  There may have been a group of kids staring at her; in fact, I don’t doubt it.  But, why is this form of social anxiety so heightened in adolescence and even more so with young people on the high-functioning end of the autism spectrum? It is due to the developmental phase characterized by the egocentric state known as the imaginary audience:

“David Elkind coined the term “imaginary audience” in 1967. The basic premise of the topic is that people who are experiencing it feel as though their behavior or actions are the main focus of other people’s attention. It is defined as how willing a child is to reveal alternative forms of themselves. The imaginary audience is a psychological concept common to the adolescent stage of human development. It refers to the belief that a person is under constant, close observation by peers, family, and strangers. This imaginary audience is proposed to account for a variety of adolescent behaviors and experiences, such as heightened self-consciousness, distortions of others’ views of the self, and a tendency toward conformity and faddisms. This act stems from the concept of ego-centrism in adolescents.[1]

Elkind studied the effects of imaginary audience and measured it using the Imaginary Audience Scale (IAS). The results of his research showed that boys were more willing than girls to express different sides of themselves to an audience. This apprehension from girls has given rise to further research on the value of privacy to girls. Imaginary audience influences behavior later in life in regards to risky behaviors and decision-making techniques. A possibility is that imaginary audience is correlated with a fear of evaluation or self-representation effects on self-esteem.[1]  

Imaginary audience effects are not a neurological disorder, but more a personality or developmental stage of life. It is not aroused by a life event; rather it is a part of the developmental process throughout adolescence. It is a natural part of the process of developing a healthy understanding of one’s relationship with the world. Most people will eventually gain a more realistic perspective on the roles they play in their peer groups as they mature. This natural developmental process can lead to high paranoia about whether the adolescence is being watched, if they are doing a task right and if people are judging them. Imaginary audience will likely cease before adolescence ends, as it is a huge part of personality development. Imaginary audience can be as simple as having to change multiple times in the morning because the adolescent still feels unsatisfactory about arriving at a destination about his/her appearance even though he/she will appear the same as everyone else. The number of adolescents who experience an imaginary audience effect cannot be described with any sort of statistics because an imaginary audience is experienced in all adolescents.” (online source)

The imaginary audience phenomenon is one reason why adolescence is so damn awful.  We feel perpetually observed and scrutinized.  For the person with autism it is even worse because of the clash between a deficiency in theory of mind and this:

“According to Jean Piaget, a Swiss developmental psychologist known for his epistemological studies with children, every child experiences imaginary audience during the preoperational stage of development. He also stated that children will outgrow this stage by age 7, but as we know now this stage lasts much longer than that. Piaget also said imaginary audience happens because young children believe others see what they see, know what they know, hear what they hear, and feel what they feel.”

Piaget’s assessment that young children believe that others see, know, hear, and feel as they do is, in fact, the definition of a theory of mind deficiency.  This is the hallmark struggle of Asperger’s Syndrome.  If we were to recall then our own middle school experiences, we would see that one of our greatest social anxieties revolved around fear of being discovered.  “Everyone sees this.  Everyone notices this one thing that I hate about myself.  I look terrible today, and everyone sees.”  In this, we see the imaginary audience in addition to the belief that “everyone” is aware of what we are trying to mask.  Keeping in mind, every single person in our peer group is experiencing the same developmental phenomenon, it is no wonder that adolescence is a horrible experience.  It’s like squeezing hordes of porcupines into a shoebox and asking them not to prick each other.

What is the outcome?

 The extremes to which adolescents experience an imaginary audience, however, varies from child to child. Some children are considered to be more “egocentric” than others and experience more of an extreme imaginary audience or have more of an elaborate personal fable.[2] Therefore, children then subconsciously put more value on the idea that everyone cares about what they are doing at all times. This is very common in adolescents during this level of development as the child is going through Erik Erikson’s identity vs. identity confusion.[3][4]

The child is struggling to figure out their identity and formulating congruent values, beliefs, morals, political views, and religious views. So, on top of experiencing an identity moratorium in which they are exploring different identities, children feel they are constantly being watched or evaluated by those around them. This leads to intense pressure being placed on the child and may also influence later self-esteem.[2][5][3][4]

Comedian and former Saturday Night Live writer John Mulaney jokes about this here:

13-year-olds are the meanest people in the world. They terrify me to this day. If I’m on the street on like a Friday at 3 PM and I see a group of 8th graders on one side of the street, I will cross to the other side of the street. Because 8th graders will make fun of you, but in an accurate way.  They will get to the thing that you don’t like about you. They don’t even need to look at you for long, they’ll just be like, “Ha ha ha ha ha! Ha ha ha ha ha! Hey, look at that high-waisted man! He got feminine hips!”  And I’m like,  “No!! That’s the thing I’m sensitive about!!!!”

Doesn’t this feel absolutely true?! And, it feels true because of our past developmental experience with the imaginary audience and our own theory of mind.
The point here is that our experience in adolescence of our own imaginary audience does, in fact, affect our self-esteem later on in life.  So, those odd teenaged behaviors and rituals that we as parents and caregivers observe in our kids do matter.  We are observing an identity being birthed, and it is vital that we assist in that with empathy, kindness, and nurturing.
You might not value or even like how your child is attempting to mitigate the intense pressure of the imaginary audience, but it is worth asking how you can be a support and resource while they individuate and, ultimately, differentiate.  My goal as a parent is that their self-esteem is intact, strong, and well-founded along with their sense of identity so that they don’t fear 13 year-olds walking down a street one day when they’re 30 years-old.
Is this possible? Even with our children with special needs? I believe so.  It is hard.  As hard as you expect it to be, you find yourself wishing that it were that easy.  For me, however, I have found that no moment has been wasted in my efforts to prepare my kids for the life they have today or the life awaiting them–regardless of what that life will look like or what their present limitations are today.



Don’t Be An Idiot

I considered writing this post as a parody of Fyodor Dostoyevsky’s novel The Idiot in which my ex-husband, replacing the novel’s protagonist, emerges from our bedroom (rather than a sanitarium) to find himself unfit for reality and decides that the only place he truly can thrive is in our basement (rather than a sanitarium).

I am not a bitter, angry ex-wife.  So, why would I want to compare my ex-husband to an idiot?

I just learned something about SSRIs and mental health this week.  I, therefore, want to pass it on to you so that you will pass it on to everyone you know particularly those who take SSRIs.

Did you know that you cannot just stop taking an SSRI? Sure, sure, the doctors tell us that it’s very bad to suddenly stop taking SSRIs, but isn’t that just doctor-y silliness? Don’t they just have to say things like that? Isn’t it just a matter of us feeling weird if we decide to stop? Hey! It’s our bodies, man! We decide! Plus, we can take it.  We can tolerate feeling weird.  If we’re taking SSRIs, then chances are we already feel weird.

Nope.  There is a very good reason you are never supposed to stop taking your SSRI medication cold turkey.  I’ll use my ex-husband as the case study.

My ex-husband told me last Friday night that he had discontinued his SSRI medication because he felt emotionally blunted.  He wanted to be able to emotionally process our separation and pending divorce.  The motivation is noble.  The action is destructive.  A week prior to this revelation, I noticed that he seemed off.  He was a bit more aggressive.  I noticed a rise in amygdala-driven responses.  I went on high alert.  Prior to this, he had been sleeping all the time.  If he was around, he was sleeping.  Suddenly, he was not sleeping.  He was leaving the house in the middle of the night and going on long drives.  He was sweating all the time.  He had also become impulsive.  He started spending money.  A lot of money.  Then, he went three days without sleeping.  He spent those nights cleaning.  If you know my ex-husband, then you know that this is alien-body-snatcher behavior.  That guy has never cleaned a thing.  Now, he’s cleaning the basement? At 4 in the morning while blasting TV on The Radio? He woke up everyone in the house.  What was going on?

I saw my therapist yesterday who happens to have a PhD in some kind of neuroscience, and I mentioned that my ex had stopped his SSRI cold turkey; he was now acting very strangely.  My therapist became very alarmed and said, “Wait, wait.  Back up.  He did what? Tell me what’s going on.”  I described his behavior.  I said that he almost looked manic.  My therapist said that he probably was.  He went on to say that stopping an SSRI suddenly can actually cause bipolar disorder in the brain where there was no bipolar mood disorder before.

Stop.  WHAT? Did you get that? Stopping an SSRI suddenly without tapering can actually cause the brain to become bipolar? 

Yes.  In fact, for some people, they have to be put on mood stabilizers to correct the damage they’ve done to their brains from suddenly stopping the SSRI.  And, in some cases, the damage is permanent.  Also? This is a medical emergency.  This is not a situation in which one calls a psychiatrist and waits a few months to get in.  This is an emergency room visit situation.

I came home and informed my ex, who is moving out in less than two weeks, that he needed to seek help STAT.  I told him what was going on in his brain.  He needed to call the Behavioral Health ER and ask for their advice at a minimum.  He needed a mood stabilizer to ease his symptoms.  He had not slept in days.  Well, if you are at all familiar with mania, then you’ll know that delusions of grandeur or, at a minimum, superiority is part of the whole manic package.  When I suggested that he take a step back and self-assess, he looked at me like I was the idiot.  Manic shmanic.  Who needed sleep? Who needed stability? Rapid cycling and lability are qualities that everyone wants in a happy life!

I have learned one thing in all my years of marriage: you can’t make anyone do anything.  I had to back off and let him run around the basement in his hypomanic haze.  He said something like, “I know what’s best for me.  I am not seeing another doctor,” as I went back upstairs.  What was that about delusions of grandeur? Clearly, he was doing so well!

Stopping an SSRI without tapering is extremely bad for the brain and dangerous.  Rapid cycling can cause suicidal ideation.  What’s more, people make terrible decision during manic episodes (like refusing to seek help).  It’s also very hard on the brain.  And, if you’re not bipolar to begin with, experiencing bipolar mood changes due to discontinuing a medication would be particularly frightening.  There are certain drugs that self-taper like Prozac.  Other SSRIs like Lexapro have very short half-lives in the body and are very dangerous to discontinue without tapering.

So, let my story be a warning.  Before you start an SSRI, know all your options and your reasons for doing so.  These are extremely powerful drugs.  Before you stop taking an SSRI, follow your doctor’s instructions for tapering to the letter.  You want your brain chemistry to be preserved.  I don’t know if my ex-husband’s brain will entirely recover from this choice.

Time will tell.

The State of Grace

I wonder if any of you are wondering how Grace is doing? Or Eadaoin, Doireann, or Milly for that matter.  Even me.  I disappeared for a bit.  From this blog anyway.

Life is never short of roller coaster-like.  At this point, I have chosen the front car, and I’m determined to ride with my hands up while screaming the entire time.  I’m going to be that girl.  One may as well truly commit to “the ride” so to speak.

Grace is doing remarkably well.  In fact, she is so stable that her psychiatrist is left scratching her head and saying, “I’m not touching anything.”  The last time that Grace experienced any psychosis was before she started taking lithium.  As Grace has said, “This lithium sure is awesome.”  Yeah, it can be.  Her psychosis was most evident when she was in the sixth grade.  Unbelievably, she will be starting high school in the fall.  I cannot believe that I’ve maintained this blog since Grace was in the sixth grade.

We have had zero trips to the Behavioral Health ER since sixth grade.  No inpatient treatment since then either.  No day treatment.  I want to sit back and figure out why in hopes that this might be replicated, but I don’t know if it can be.  I think that schizophrenia spectrum disorders are a lot like autism spectrum disorders.  When you meet one person on the autism spectrum, you’ve only met one person with one representation and/or experience of autism.  It feels almost impossible to generalize their experience to others.  So it would seem with something like schizoaffective disorder, bipolar type.

So, why is there stability in Grace when everyone in the field tells me that there should not be? I can only describe factors that might contribute to her stability.  I can’t provide concrete answers, but neither can the experts:

1.  Grace was diagnosed quickly.  Within two months of her first psychotic episode, we had the correct diagnosis.  This is almost unheard of.  Our journey getting any kind of diagnosis was rather painful, and you can read about the journey here.  Nonetheless, once Grace was psychotic, I moved quickly and used the resources available to us at the time.  Grace was already in an In-Home Crisis Management program wherein a therapist visited our home as many times as needed in order to help Grace achieve stability.  This was one reason I was able to hook Grace up with resources so quickly.  We were already in the system.

2.  Grace saw two psychiatrists who were not afraid to aggressively treat her psychosis.  They also were not afraid to diagnose her with schizoaffective disorder.  They wasted little time in trying whatever medications they could to achieve rapid stability.  Grace was a rapid cycler during her hallucinations.  Suicidal ideation is highest during rapid cycling in people with mood disorders.  Grace was suicidal during this phase.  This was when she was admitted into an inpatient treatment setting for medication management.

3.  I researched the hell out of bipolar disorder, schizophrenia, and schizoaffective disorder so that I could have discussions with Grace’s clinicians about her treatment.  Grace saw pediatric psychiatrists.  What I discovered is that pediatric psychiatrists knew little about long-term treatment of psychotic disorders in children.  They talked about therapy, but they had little understanding of what treatment approach would be most effective.  The therapists were of little help as well.  No one knew what to do or how to proceed.  I had to fill in the gap or no one else would, and that is a heavy burden to bear as a parent.

4.  Biologically based mental health disorders are brain-based.  So, I looked to treatment plans for stroke patients to get a sense of how people who have lost gray matter are rehabilitated.  Many people who have lost gray matter due to stroke return to their lives somewhat impaired but fully functional again.  What if this held true for people with bipolar disorder but, more specific, people with schizophrenia spectrum disorders? Schizophrenia is neurodegenerative meaning that white/gray matter is lost due to the progression of the disease.  Could the brain compensate for the losses by rewiring itself? How might the brain be encouraged to do this? This was my primary question.

5.  The kind of therapy that was clearly the best choice for Grace was skills-based.  Due to white/gray matter loss because of the disease progression, Grace’s working memory and, consequently, her executive function skills were diminishing rapidly.  Her affect was affected and had become flat.  She was also losing ground in her social skills.  Milly, her sister with an autism spectrum disorder, had become more socially adept than her.  So, through a state grant, we were able to have a therapist come into our home for two hours weekly and do skills-based therapy with Grace.  The skills covered everything from breaking down everyday tasks into steps (executive function) in order to accomplish them to more emotionally based skills such as, “When I feel frustrated, what can I do with my feelings?”  I made a chart for Grace’s wall that held little cards.  On the front of each card was a feeling such as ‘sad’ or ‘bored’.  On the back of each card was a list of skills that she could utilize to “ride the wave” of that feeling until it passed.  That is one example of a skill–learning distress tolerance.  Distress tolerance is so important in managing both the negative and positive symptoms of schizophrenia.  Learning coping strategies ties for first place here.

6.  Grace attends a school for students with needs that differ from your average student.  In fact, this school does have a program for truly gifted students as well.  Grace’s program is for students with emotional and behavioral disorders.  She was one of six students in her class with high needs.  Her school is also very skills-based and uses the Nurtured Heart approach in its classroom management.  One of the most important things to remember when it comes to managing biologically based mental health disorders is stress management.  Eliminating unnecessary stress is key in promoting well-being.  Changing the school environment was an obvious choice although not an easy task at all.  Grace’s high school will also be within this intermediate district.

7.  Diet matters.  For example, caffeine interferes with lithium absorption.  Grace, therefore, consumes little to no caffeine.  No soda! We are careful with what she eats, and I can’t say this enough–healthy fats.  The brain needs it.  It’s not possible to heal a brain without healthy fats.  Also, sugar is not her friend.  Sugar and schizophrenia are mortal enemies.

8.  Assume competence.  I do this with all my kids.  I assume that they are competent and able to do whatever is asked of them until they prove that they cannot.  It might look harsh to the outside observer, but, most of the time, they can actually do what I’m asking.  It might be hard.  They might not like it.  It might require ten times more effort for them to do what is a cinch for someone else.  But, can they do it? More often than not, yes.  This is what I want them to see.  Their limitation does not necessarily have to limit them.  It might slow them down.  They might have to arrive at the same point as everyone else from a different direction, but they, too, can get there all the same.  Assuming competence is one of the best things I’ve done for my kids.  When they finally do hit the boundaries of their own abilities, then we know where to focus our therapies if that limitation is something that can be overcome.  And, there is nothing more exhilarating than watching a person overcome something that they never thought they could.

Assuming competence is what has led Grace to overcome a lot of self-perceived limitations and, thusly, learn to take risks.  When a person is able to change their personal narrative from “I can’t do that” to “I might be able to do that,” things change.  They are willing to entertain possibilities and try new things.  They are willing to listen to other people give them suggestions.  Suddenly, when a doctor offers a suggestion, the doctor might be onto something.  There is hope.  And, ultimately, it is the cultivation of hope that keeps all of us going because we all have limitations in our lives.  The presence of those limitations need not rob us of our hope for a good future.  Tenacity and perseverance are forged in circumstances just like Grace’s, and she’s got them both in spades, in part, due to her life experience.

Today, she can babysit.  She can put on a puppet show.  She can problem solve.  She also still hallucinates with insight that they are not real, and she experiences hypomania and very mild rapid cycling.  She is aware of what it is and requests to take a lithium earlier in the day.  There are still bad days to be sure in which she levitates around the house like Creepy Susie, but now she is aware of herself and tries to do something about it.  Developing insight is one of the best skills a person can learn, and I am constantly engaging her on a deeper level so that she continues to develop that insight.

Currently, there is no cure for schizophrenia or bipolar disorder.  It is not, however, a death sentence.  There is hope.  Your life and the life of your child will never be the same if this is your child’s diagnosis, but it doesn’t mean that it’s over and done with either.  Different doesn’t mean bad.  Difficult doesn’t mean bad.

It does make for a bigger life with a lot more twists and turns, but, like I said, I’ve committed to the ride.  Front car.  Hands up.  I am going to enjoy this because it’s my life.  It’s our life.  And, most important, I want her to love her life as much as I love her.

Taking Mental Healthcare Seriously

It’s no secret that there is a crisis in the healthcare system in America.  This is old news.  In fact, it’s not even news anymore.  It’s starting to become just “the way it is”.  Behavioral healthcare, as health insurance providers like to call it, is an even greater problem.  What is behavioral healthcare? As one hospital staff member explained it to me, “If it doesn’t make you sick or require surgery, then it’s not really considered an illness by the hospital and we refuse to bill insurance for it.”  This is where “behavioral health” comes in.

Behavioral health refers to biologically based mental health disorders and mental health in general.  Any disorder that can be found in the DSM-5 falls under “behavioral health”.  In my city, there is a Behavioral Health Emergency Room.  If you or someone you know is experiencing suicidal ideation, then go to the Behavioral Health ER.  When Grace stabbed herself with a fork, we took her there.  If a person with a mood disorder were to suddenly begin rapid cycling, then they would go to the Behavioral Health ER.  Anyone struggling with psychosis, mania, clinical depression not responding to treatment and in need of immediate care and the like would go to a Behavioral Health ER.  These disorders are, in fact, all manifestations of neurological disorders that are treated under the psychiatric specialty rather than neurology.  They are, however, still medical in nature and, therefore, require medical attention.  Why is the opinion even in the medical community otherwise? Does it really matter?

When hospital staff so brazenly declare that mental health disorders are not medical in nature and, therefore, will not bill health insurance for them, they are perpetuating the stigma surrounding mental illness.  Schizophrenia spectrum disorders are neurodegenerative and neurodevelopmental in nature.  They are the definition of “medical”, and yet staff members in hospital billing departments still maintain a belief that this cluster of disorders represents something more like Dissociative Identity Disorder (DID) or just bad behavior brought on by a combination of stress and poor distress tolerance.  What is the likelihood that a person experiencing psychosis will seek medical attention then if hospital staff are untrained and ignorant? What is the likelihood that hospital staff will show respect to patients struggling with psychosis, mania, or depressive symptoms if they believe that it’s “all in their head” and with some real effort these patients could simply heal themselves?

What perpetuates this stigma within the medical community itself? Let me give you an example from my own community.  I’ve written a few posts on my ex-husband’s anxiety disorder.  He has struggled most of his life with almost crippling anxiety.  Persuading him to overcome his anxiety and see an internist just for a physical examination in which he could also inquire about anxiety treatment was a huge success.  It took 16 years of convincing.  When he asked for a list of psychiatrists from his internist, the clinic gave him a list of recommended psychiatrists all of whom were no longer taking patients due to either being retired or dead.  This clinic had not bothered to keep their list of psychiatrists up to date! They certainly keep their other lists of recommended specialists up to date.  Are they giving men and women lists of recommended oncologists who have died and/or retired? Doubtful.  This is profoundly troubling since, on average, twice as many women die by suicide annually than they do from breast cancer.  Three times as many men die by suicide annually than they do by prostate cancer.  And, yet, we are surrounded by charities and reminders that breast cancer kills, and we should do something about it.  I agree wholeheartedly.  Men should get physical exams and take care of their bodies.  But, a well-known clinic can’t be bothered to maintain a list of psychiatrists so that their patients can receive psychiatric care and follow-up? Why?

Another large and well-known mental healthcare service provider in my area sent out a letter two weeks ago stating that they would be discontinuing their psychiatric services.  Period.  There was no list of local treating psychiatrists who current patients could call in order to maintain their current level of care.  Just a notice of “We’re closed for business.  Good luck getting those meds filled.”  This is shocking.  Psychiatry is a medical speciality.  Patients under the care of a psychiatrist are receiving specialized care, and it borders on unethical to suddenly stop care without transferring that care to another physician or, at a bare minimum, providing a list of physicians who are taking new patients.  This attitude, however, is prevalent within the medical community itself, and this is what perpetuates the stigma within the medical community.  If doctors, therapists, and administrators themselves believe that behavioral healthcare is simply optional and not vital to the health and well-being of their patients, then what does this say about the medical community’s view of mental health? A person receiving treatment for Multiple Sclerosis would not simply receive a letter from their neurologist stating, “I’ve decided to drop you as a patient.  Good luck finding care elsewhere,” but patients with diagnosed mental health disorders are treated like this quite often by their own mental healthcare providers.  Why?

I think that the medical community is caught between two views–the old and the new.  Animal models are showing that most mental health disorders from depression and OCD to bipolar disorder and schizophrenia spectrum disorders are biologically based meaning caused by the enteric or primary nervous system.  The research is consistently pointing to the gut or the brain.  It is an exciting time to be a neuroscientist.  Deficits in the function on a brain level often manifest behaviorally, however, and many people–even doctors–are very uncomfortable with unusual behaviors.  It’s easy to blame trauma and shove someone out the door.  Even trauma, however, becomes brain-based as the success of treatments like EMDR are showing.

We are socially conditioned to feel ashamed when we feel anything but happy and good about ourselves.  If you don’t feel happy, then pull yourself up by your bootstraps! Exercise.  Change your diet.  Lose weight.  Get a makeover.  Go for a walk.  This might work if you don’t have a biologically based mental disorder, but who, within the medical community, is willing to consider this? Furthermore, who is willing to consider that a child might have bipolar disorder or a schizophrenia spectrum disorder? What physician is willing to say that bipolar disorder, for example, is as serious as cancer and deserves the same amount of attention and care? The number one cause of premature death among those diagnosed with bipolar disorder is suicide with 15-17% taking their own life and up to 50% attempting suicide at least once due to the negative symptoms of the disorder.  These are shocking statistics, and I don’t think most physicians consider this.  Until the medical community at large is able to take mental health seriously–as seriously as it takes cancer and heart disease–there will be a lack of quality care and treatment for people struggling with mental health disorders.  Perhaps then we’ll begin seeing sparkly new hospital wings dedicated to mental healthcare right next to the breast cancer and heart surgery wings.

That will be a good day.

More Information:

Shame and Stigma

A good friend recently recommended this book to me: I Thought It Was Just Me (but it isn’t) by Brené Brown.  It was rocking her world.  In fact, she was loving it so much that she was sending me quotes from the book throughout the day, and I was finding myself wanting to read more.  Brown’s book is about shame and developing shame resilience.  She is, in fact, one of only a handful of people who has dedicated her academic career to research around shame and its effect on the brain, body, relationships, gender, and communities at large.  My interest was piqued to say the least.  I bought the book.

I’m going to recommend it to all of you.  And, in the spirit of that famous 1970s Faberge shampoo television commercial of old (but not that old), I’m going to suggest that you read it and then recommend it to your friends.

Shame is not a hot topic at cocktail parties although if someone brought up the topic next to me I would stay and chat.  According to Brown, most people run from it and dislike discussing it.  I am not one of those people.  I want to talk about shame.  What is shame? After years of listening to stories and doing research, this is Brown’s definition, and I think it’s a good one:

Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.

She describes shame ever so correctly as a “full-contact emotion” meaning that we feel shame both emotionally and viscerally.  You know when you’ve been shamed.  Whether you feel it in your stomach or your chest or feel yourself suddenly sinking into that familiar emotional prison where the guard says, “You deserved that,” shame punishes from the inside out and the outside in.  It puts you in a double bind so that no matter what you do, you cannot win.  Or, at least, that’s how it feels.

Shame is at the core of the stigma associated with mental illness.  Brown’s definition of shame describes the existential experience of many people who have encountered stigma.  There’s only a certain level of “crazy” that is socially acceptable around these parts.  If anyone exceeds that? Well then, something must be wrong with them! Shun them and drive them out of town! Surprisingly, there are many ways to shun and alienate people who are viewed to be flawed and unworthy of acceptance and belonging.  This is why stigma is so dangerous.  One’s personal shame is often based in a perception that just might be false.  We feel like we are flawed and therefore unworthy, but this feeling originates in us.  Stigma originates outside of us and reinforces the feelings of shame that come from within.  We, therefore, stop questioning the validity of our shame responses because parts of our community are validating our shame for us! The logical step is then to believe that our shame is true; we must be innately flawed and unworthy of acceptance and belonging.  What’s next then? Action urges.  People usually begin to act on their feelings reinforced by stigma if they do not have a stronger message coming into their lives from somewhere else.  This is a not a healthy place to be.

Brown recounted a story about a young woman named Allison whose mother hanged herself.  She was an adolescent at the time of her mother’s suicide.  Allison recalled that her community rejected her.  Everyone began to pull away from her and her grieving father.  She lost her friends.  She and her father were shunned as if her mother’s suicide was a virus that could be passed on.  A big scarlet S was plastered to their chests–SUICIDE.  The intensity of the shame that was poured out upon this young woman and her father was crippling.  Eventually, her father died, and she reported feeling relieved because she never had to return to her hometown again.  She never again had to be known as the girl whose mother hanged herself.

Reading this story didn’t exactly hit a nerve for me, but I felt it in a raw sort of way.  I had two grandparents who died by suicide as you, my readers, know.  My mother has struggled with depression for most of her life, and she has tried to commit suicide many times.  There was an occasion when I was 14 in which she was almost successful.  In a very dramatic fashion, she was removed from our home in full view of the Trinity, the Heavenly Host, the entire country club association, and Vera the neighborhood gossiping hen.  I just stood there thinking, “How long will it take for the entire state of Texas to find out that my mother just tried to blow her head off?” Vera sidled up to me sweetly and cooed at me in her treacly voice, “Oh honey, I am so sorry! Now, tell me what happened exactly?”  There it was.  The phone calls started coming in within 24 hours.  She moved fast.  Veronica’s parents wouldn’t let me come over anymore.  Kathy’s parents wouldn’t let her come to my house, and I couldn’t go there either.  Kerri’s parents wouldn’t even let her call me.  I spent that entire summer socially isolated and alone.  In other words, I spent the summer at my stepfather’s mother’s house.  She was Lithuanian, mean, and made me embroider doilies all….summer…long.  This is one shade of stigma from an external point of view.  The internalized experience might be something like this: “No one wants you around because of your mother.”  This is a fairly accurate experience for many people who have mental illness in their family.  This is one reason why many families keep mental illness a secret which only perpetuates and feeds shame.  They don’t seek out much needed supports and interventions because they are legitimately fearful that they will lose their social support structures.  I did.

A similar thing happened to us after Grace’s first psychotic episode.  She lost most of her friends save one, and I lost friends, too–one in particular.  She has still never called me and does not respond to any attempted contact.  Apparently, schizophrenia spectrum disorders are catchy! The natural response to this is retaliation.  There is a self-righteous anger that comes to the surface.  We want to take out our metaphorical bats and go have “a talk” with the people who shamed and victimized vulnerable people.  I want to share something very important that Brown notes:

“…if we are going to understand shame, we must not only seek to understand Allison’s experiences, but the reactions of those around her. We can’t simply “shift shame” from Allison to her “insensitive neighbors.” Shaming her neighbors and friends would be equally destructive. Second, we have to dig deep and be honest about how we might react as a neighbor or friend. If I came home from work and saw an ambulance and police cars surrounding a neighbor’s house, I’d immediately patch into the neighborhood phone tree to find out what happened. I might not walk over and stand around gawking, because I’d like to believe I’m above that— or at least I’d want my neighbors to think I’m above it. Instead, I’d call someone who had walked over, which is probably worse. Unless I was extremely aware of what I was doing and I was consciously working not to gossip, I would probably be equally guilty of talking about it, speculating why, wondering about the details and drawing false conclusions. I can just hear conversations where we’re saying things like “I knew something wasn’t right over there” or “You know, one day I saw her . . .” I might even make assumptions about the mental stability of Allison’s father or about Allison herself following such a traumatic event. I might become uncomfortable letting my daughter play at her house. In other words, I might become exactly what I hated and, at first, refused to understand. Why? Because I’m a terrible person like Allison’s teachers, neighbors and friends? No— it’s because I’m human and situations like that can throw us into our own fear, anxiety, grief and, sometimes, even into our own shame. And to alleviate those overwhelming feelings, we seek connection with others— sometimes in incredibly hurtful and destructive ways, like gossiping and excluding others.  If we really want to get at the heart of the beast, we have to understand more than what it feels like to experience shame. We need to understand when and why we are the most likely to engage in shaming behaviors toward others, how we can develop our resilience to shame and how we can consciously make the effort not to shame others…Our level of resilience to shame is not dependent solely on our ability to recognize these behaviors and emotions in ourselves, but also on our ability to build connections with others. These connections require us to understand what we share in common when it comes to shame.”

And, there it is.  People who are often on the other side of our shaming experiences are human beings, too, seeking out connection to alleviate their own painful internal responses. The way in which they go about it can often be very hurtful, but shame shifting is as destructive as applying stigma.

What is Brown really saying here? The only real cure for shame and stigma is empathy.  Perspective-taking.  And, it has to flow both ways.  The real burner here is that someone has to show empathy first.  Who do you suppose is going to do that? The neighborhood associations who storm city hall in order to prevent a day treatment program from being built near them? Likely not.  Reactionary behavior like that is indicative of fear.  We still live in an age where people believe that schizophrenia is dissociative identity disorder which, to me, is just laughable.  Nonetheless, it’s true.

Clearly, I don’t have all the answers or even one great one.  I do see, however, that shame shifting, responding in anger, and blaming behavior only perpetuate the cycle of stigma in our culture.  I suspect that it will take a great deal of patient empathy and painstaking education over time as well as a willingness to listen to people air out their fears in order to begin to address and eventually lift the shadow of stigma associated with mental illness from our culture.

Anger is easy.  Empathy, on the other hand, is not, but someone has to take the road less traveled if the culture is going to shift.