Mast Cells, Migraines, and New Possibilities

Good morning, everyone (Science jargon incoming so put your thinking hats on)!

I’ve come bearing some interesting news that might help you.  Let me provide the context.

If you’ve read any of the content of this blog, then you know that I started it when my daughter was diagnosed with childhood-onset bipolar disorder in 2011.  A few months later she was diagnosed with childhood-onset schizophrenia.  A few months later, she was diagnosed with schizoaffective disorder-bipolar type.  It was quite a time for an 11 year-old girl.

We saw so many specialists during that time that I am still paying off the medical bills, and we had health insurance! That was five years ago! Suffice it to say, those years are a blur.  Some kind of lucid nightmare.  So, what news do I have?

Ever heard of a mast cell?

If you have not and you yourself or someone you care about has a biologically-based brain disorder, then heads up.

A mast cell is a type of white blood cell produced in our bone marrow.  More specifically, it is a type of granulocyte.  A granulocyte is a cell (-cyte means ‘cell’) that contains ‘granules’ which the cell will eject into nearby tissue or the bloodstream once ‘activated’ or signaled to do so.  The granules are like a chemical cocktail in that these granules are chemically varied.  In other words, there are a lot of different chemicals inside a mast cell, and when the mast cell activates it dumps its chemical payload wherever it is in the body.

The granules consist of familiar sounding chemical mediators like histamine, heparin (anticoagulant), and serotonin.  Some of the chemical mediators within the mast cell may not sound so familiar like prostaglandins and cytokines, for example.  Mast cells are heavily involved with allergic reactions, hives and flushing, asthma, and anaphylaxis.  They are also involved with modulating the blood-brain barrier (BBB).  Recent research has shown that mast cells are involved in a lot of other bodily activities, too, which is why they can be such troublemakers.

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A mast cell with visible granules

What does this little white blood cell have to do with, well, anything pertaining to you?

About ten years ago, a disorder called Mast Cell Activation Disorder (MCAD) was “discovered” on the heels of another rather rare neoplastic disorder called mastocytosis (there’s that word root again –cyte).  A mastocyte is a mast cell.  The suffix -osis means “condition”, but it often describes an increase in number or a proliferation.  So, mastocytosis is a condition in which mast cells proliferate and in which there is an abnormal condition of the mast cells themselves.  They do not behave like they should.  It was also determined that there should be a spectrum of mast cell disorders, and MCAD and mastocytosis should be on that spectrum–mastocytosis being on the severe end of that spectrum; MCAD being somewhere in the middle.  Anaphylaxis Syndrome, another manifestation of a mast cell disorder, is also on this spectrum.

What does this spectrum have to do with mental health?

It has been determined by specialists studying mast cell disorders that neuropsychiatric disorders can be a manifestation of activated mast cells.  Wha….?

See?

Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases.

And that’s just one study.

Here’s some anecdotal evidence.  I recently visited my friendly, local allergist who just returned to my city from practicing at the Mayo Clinic.  I have a long history of weird health issues.  Weird health issues.  Also? Over the years, I have acquired a long-ass list of allergies which almost always result in anaphylaxis.  I almost die a few times a year.  I grew tired of almost dying so frequently and made an appointment with an allergist in the know.  After Dr. Allergy reviewed my history and case, she said, “I think you have a mast cell disorder.”  Off to the local mega-versity for fancy tests!  When I saw her for my follow-up, she declared that I was on the mast cell disorder spectrum.  Okaaaaay…now what?

Lots and lots of antihistamines every day to manage the unruly mast cells.  Multiple Epipens placed everywhere in my house and on my person at all times.  Benadryl as well.  Low-histamine diet.  Anaphylaxis action plan in the house, with family and friends, and with me for trips to the ER as well as blood and urine panel orders for the ER every time I show up there with an allergic reaction.  What a pain in the…

Here is what I noticed from the high antihistamine doses:

  • my chronic migraines suddenly got better
  • migraines were treatable with a single dose of triptan and antihistamine (second-generation)
  • GI issues improved dramatically
  • body pains improved
  • anxiety issues improved dramatically

Note: high doses of Benadryl lowers seizure threshold.

Here comes the really interesting part.

Before Grace became symptomatic or entered the prodrome, she was hit hard with a mycoplasma infection.  Mycoplasma is a class of a bacteria that lack a cell wall making them more amoeba-like and invulnerable to most classes of antibiotics because many antibiotics work by breaking down the cell walls.  In the case of a mycoplasma infection, the antibiotics paralyze the bacteria to prevent further multiplication so that your immune system can kill it.  This can take weeks to months depending upon which variety of mycoplasma you’ve got (there are over 200 types), and symptoms can recur years after infection.  Sort of like a bad knee aching before it rains.  Well, aside from mycoplasma making you really sick, what else do they do? This:

Mycoplasma pneumoniae –induced activation and cytokine production in rodent mast cells

What does this mean? The type of mycoplasma bacteria that causes pneumonia and upper respiratory infections activates mast cells.  What kind of cascade can happen from there?

Eosinophilia in Mast Cell Disease

Eosinophilia is an increase in eosinophils which is another granulocyte associated with allergic reactions, parasites, inflammation, and cancer.  In very simple terms, eosinophilia, a high eosinophil count in the bloodstream, would be, for example, common to see during ragweed season if you are allergic to ragweed.  Your eosinophil count would be elevated due to the presence of an allergen.  What does eosinophilia have to do with anything? Mast cells influence eosinophils and vice-versa.  When Grace was released from her first hospital setting, she had eosinophilia.  The pediatrician on duty spoke to me about it.  She didn’t know what to make of it but told me it was noteworthy.  I should look into it.  I told our pediatrician.  No one knew what to do about it at the time.  Then.  But, now? I wondered in light of what I am learning about mastocytosis.

So, what did I do? I experimented.

Grace gets terrible migraines–even now.  It was a hallmark of her prodromal symptomology.  We would have to take her to the specialty hospital for Toradol injections to stop the migraine cycle.  So, when she started getting a migraine two weeks ago, I wondered if a naproxen-antihistamine cocktail would stop it.  Naproxen targets prostaglandins (a chemical mediator produced by mast cells)–although NSAIDs are often contraindicated for people with mast cell problems– while the antihistamine (second-generation) targets certain histamines.  Guess what? It worked.  It stopped her migraine cycle.

I added a second-generation antihistamine to her medication regimen–an AM and PM dose.  She has not had a migraine since, and her mood has improved.  She is no longer experiencing cycling in her mood.  Her focus is better.  She is less irritable and agitated.  Her daily flushing is gone.  She is sleeping better.  Her affect has improved, and persistent urticaria (hives) have healed as well.

MCAD is a new disorder.  Few doctors are familiar with it.  My rheumatologist admitted to knowing what it is but knowing next to nothing about it.  She had little understanding and yet mast cells affect connective tissue and the immune system significantly.

Mast Cell and Autoimmune Diseases

and

Mast Cells in the Inflammatory Connective Diseases

So, what is the conclusion?

Not everything is always as it seems.  What we know today about our current health status may not be what we know tomorrow.

If you want to know more about mast cell disorders, then go here:

The Mastocytosis Society (recommended to me by my allergist)

MAST ATTACK: EDUCATING PEOPLE ABOUT LIFE WITH MAST CELL DISORDERS (An outstanding blog maintained by a scientist with a mast cell disorder)

 

 

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A Supplement Worth Trying

I wanted to write a follow-up to my last post on this complementary migraine treatment:

So, does it work? In a word, yes.  There is a reason that German physicians prescribe butterbur and feverfew to migraineurs.  It is effective.  Where have I seen its effectiveness the most thus far? Premenstrual migraines.

I take three prescription medications to prophylactically manage migraines.  I have three T2 lesions on my brain resulting from twelve years of almost unmanageable migraines.  I saw another doctor yesterday about migraine management, and he said, “You are doing everything imaginable nutritionally to try to prevent and heal yourself from migraines.”

I am not fooling around.

Enter butterbur and feverfew with niacin.  Would it work?

This treatment typically takes a month to be effective.  I’ve been using it for less than one month.  This month, however, I did not experience the premenstrual migraine phenomenon which always happens.  No matter what I do, I can’t seem to prevent them, and those events are painful in a special way.  They have a different flavor (and yes, I know about estrogen dominance).

So, anecdotally, I can confirm, along with a good portion of the European medical  community, that butterbur and feverfew work! The supplement that I recommend is Preventa.  The company even sends you a migraine calendar to chart your migraines.

If you struggle with migraines and would like to try an alternative treatment or augment your current one, give this a go.  I’m seeing good results, and, coming from me, that is a dramatic statement.

 

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.

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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

 

Finally…

I feel like a Who from Dr. Seuss’s Horton Hears a Who.  I need to shout, “I am here! I am here!”  There is one word that describes the past month: exhaustion.  This Lupus thing is no joke.  Plain vanilla exhaustion.  All. The. Time.

I think raising teenagers is adding to that sense of exhaustion.  “Oh look, I folded a towel and parented a teenager.  I need to lie down.”  I might say this with a little cheek, but my husband’s recent antics might be adding to the inordinate fatigue.

“Why is there a drunk man in our living room at 1 in the morning?”

“Well, Hank was driving us home from the client dinner.”

“Where is Hank?”

“He got arrested…for DUI.”

“How did you get here…with Paul?”

“The cops dropped us off.  I’m calling Paul a cab.”

“Wait, you let a drunk Hank drive you home?”

“I didn’t know he was drunk.  He looked completely sober.”

“Oh my god…”

Perhaps it’s Milly’s Canine Drama.  Her upper canine has been loose but refusing to come out.  She’s been yanking on that stubborn tooth for days and days and then complaining, “It huuUUUUUuuuuurts!”  Finally, in the car yesterday after picking her up from school, she shouted, “It came out! I can’t find it!” Blood was pooling in her mouth so it sounded more like, “Ih ame ou..I an’t ind it!” And then the crying started because she was bleeding not to mention she couldn’t spit out the blood.  She looked like a little vampire what with all the blood starting to stream down the sides of her mouth.  I was driving while simultaneously trying to find a tissue.  I then spied just what I needed! One of my older girls left a maxi pad in the car for some reason.  I think it fell out of a purse or backpack.  I grabbed it, opened it, and said, “Here! This is perfect! Spit out the blood onto this!” Eadaoin shouted, “Oh, yeah, actually that will work!” Milly looked horrified.  She held it out in front of her like it was a dead animal.  I was highly amused, looking in the rearview mirror to see my daughter with a pad sticking out of her mouth.

Of course, Grace is having terrible migraines again except she is experiencing prosopagnosia with them now.  What a weird thing.  That’s been going on for a week.  We are going to the specialty hospital today for a Toradol injection and quick neurological check.  I also get the feedback from Eadaoin’s neuropsychological profile at the same time! So, do you know what I did? I told my husband that he had to come.  He has never been to any meeting or appointment where Grace is concerned.  Not once.  I put my foot down.  Guess what? He’s coming.  So, he’ll go with Grace while I go to the feedback session.  He gets to meet her neurologist.  Finally.

He also finally saw a psychiatrist and had his first intake last week.  Another ‘finally’.

We are off to the races this morning, and all I want to do is lie down.  I can do it.

Right? Right.  ::whimper::

 

An Ontological Discussion

I’m back! Where was I? My precious laptop died.  The hard drive failed.  My Mac was sent off to the Genius Bar for an entire week.  O the pain! My husband was very pragmatic about it:

“You’ll be fine.  We have three iPads.  Just use one of those, or use your phone.  You’ve got a Smartphone.”

My response?

“…..”

I feel the need to defend our possession of three iPads.  My husband works in the IT field.  He was given all those iPads through occupational opportunities.  “Show up at this event and get a free iPad!” He once went to a Microsoft roundtable discussion and walked out with a free laptop.  I don’t understand how that world operates, but I do appreciate the swag.  He was even given the MacBook Pro I now call mine.

Anyway, I am not 25.  I cannot write blog posts from an iPad.  I’m one of those old people who requires a keyboard.  Even a tiny Bluetooth keyboard.  Something!

It’s not a bad thing to go silent for a while.  I was cut off from the Internet essentially, and I was more present because I didn’t have the distraction of my shiny laptop.  So, what have I learned in the brief time that I was offline?

Milly is finally seeing a pediatric psychiatrist.  When I step back and read this I shake my head.  I have three children seeing psychiatrists.  Good grief! Is that really necessary? Remember that neighbor down the street who was gossiping about my family with other neighbors? She yelled at me from her front steps and screamed “Munchausers!”  When she emailed me later to justify her behavior, she told me that she knew that all my children were medicated; she didn’t agree with that.  I must have “Munchausers” if I’m medicating all my children.

Her obvious ignorance regarding factitious disorders aside as well as the perpetuation of misinformation amongst the women down the block, there is a valid point hidden here.  Is it good to medicate children? Grace is medicated.  Eadaoin is medicated.  Milly is medicated.  Doireann is not.

I used to think like my neighbor.  I refused to take medication myself.  My mother took so many drugs.  I didn’t want to be like that.  I grew up around myriad pill bottles.  My mother had Multiple Sclerosis, and she had a pill for everything that ailed her.  In the early 80s, there weren’t a lot of treatment options.  She also struggled with a major depressive disorder in addition to a personality disorder.  I grew up around mental and physical illnesses.  I wanted to walk a different path.  I wanted to be my mother’s foil in every way.  So, when I got my first migraine at 27 years-old, I didn’t want to take medication for it.  Surely there was a better way to manage it.

I went to a homeopath.  I went to a naturopath.  I saw chiropractors.  And, I suffered.  Everyone had different opinions as to why I had migraines, and they were all adamant that they were right.  I tried to do everything that everyone told me to do.  I never improved.  Eventually, I began to experience 20 migraines a month, and my OB practically dragged me to a neurologist.  I needed medication and testing.  I was terrified.  I hated neurologists having been forced to see them when I was younger due to a seizure disorder.  I wanted to be done.  Thus began my journey into the weird world of the brain and better living through chemistry.

If epilepsy runs in your family, as it does in mine, you have almost double the risk for developing migraine with aura.  Oh.  Well, that sucks.  Maybe I should have visited a neurologist sooner for my migraines.  I have a seizure disorder.  Migraine with aura in women causes white matter lesions which can permanently alter brain structure.  Uh…that seems important.  So, taking Excedrin for Migraine and sleeping it off isn’t a sound practice? We should not be doing that? Why? Those structural changes can put you at risk for stroke later in life.  Add an autoimmune disease like SLE to the mix and the results can be even more serious.  A migraine is not a headache.  It’s a neurological event that requires the care of a neurologist.  Not the dude at Walgreen’s stocking the analgesic aisle.

I’ve made my point, right? I was an idiot to wait so long to see a neurologist, but I was afraid.  I was afraid because I’d been forced to see neurologists before, and they were all asshats.  That’s right.  All of ’em.  Neurologists, in general, tend to treat patients like walking brains.  They are known to have a terrible bedside manner largely because they are so smart.  Neurology is a very hard speciality, and it draws the clinically-minded physician who should probably be in a lab dissecting brains rather than interfacing with humans with pulses.  I wasn’t properly diagnosed with a seizure disorder for years because my seizures were idiopathic.  A brilliant neurologist finally diagnosed me based upon posturing in my left hand.  From that posturing she knew the type of seizures I had and predicted that my EEG would be “clean”.  Up until that moment,  I felt crazy, and I was weary of being examined and sent on my way with a clean bill of health even though I knew something was wrong.

But we keep trying.  We are tenacious.  We don’t give up just because we don’t like it or because we are scared or because it’s hard.

This is what it’s like with our kids and even ourselves when we talk about mental health.  There are some horrible mental health care providers out there.  Let’s just say it.  There are! I’ve met some really bad therapists and psychiatrists.  There’s a reason One Flew Over the Cuckoo’s Nest was written.  I’ve met my share of Nurse Ratcheds and sadistic psychiatrists.  Do we let them determine our progression in life or our choices? Do we abandon our path and camp out somewhere just because we’re afraid? Do I refuse to get help for my daughters because I’m afraid of what other people will think of me or even them? Do I cower or let my daughters shrink because a few women down the block gossip about us?

One day, medication may not be the right answer for Milly or Eadaoin, and I’m open to that.  I am, however, out there in the world banging on doors.  What is going to move them up the spectrum of functionality? Three weeks ago, Milly was crying every day, overwhelmed with fear and anxiety.  Today, she isn’t.  She’s able to try to take risks.  She has moved up the spectrum of functionality.  Can she self-regulate? Well, she tries.  It took her an hour to calm down last night after a disappointment, but she did calm down eventually.  She is able to talk about her feelings with more ease rather than hide under her desk in her room.  On a very basic level, this is why we use medication in terms of treating mental health issues.  We are attempting to augment a deficiency so that we become more functional in hopes that the side effect profile of said medication will not add to our deficiencies.  While the drug is in use, we take advantage of therapy in order to learn new skills that will compensate for our natural deficiencies so that when we stop using the drug we will not feel our deficiencies as much as we did before.  The drug is a buffer and a life preserver of sorts that allows us to learn to properly swim in whatever sort of sea characterizes our life.  If our life is like choppy waters, then we must acquire the skills to swim in that.  If our life is like that of a vast ocean, then we must acquire the skills to learn to swim in that.  If we live on an island with few resources, then we have to learn to live there.

Why would we deprive our children, ourselves, or anyone else from acquiring functionality or judge someone for attempting to engage in this growth process? Why should we fear? My neighbor judged me harshly because she insisted that schizophrenia was really just caused by a food allergy.  I was the stupid one for consulting a doctor.  I had “Munchausers”.  I should have been seeing a chiropractor who specialized in applied kinesiology.  She is entitled to her opinion but not her judgments.  None of us are.  I don’t walk in your shoes, and you don’t walk in mine.  I have no right to hold your decisions against you when I don’t even know how you arrived at the space in your life that you now occupy.  I’m not privy to your deepest desires or the movements of your heart.

What I do know is that it’s far easier to judge someone than to love someone or even come alongside someone who is suffering.  But, I think that goodness is the answer for what ails us.  It will always trump judgment.

I was at a conference last year, and a speaker pondered:

“What if the problem today isn’t drugs or terrorism, unemployment or poverty but rather the lack of goodness in the world?”

It’s an interesting question, and you don’t have to agree with the conclusion.  I, however, see more and more that cynicism, criticism, anger, and fear-mongering don’t bring lasting change in my life, the lives of my children, or even the world at large.  Goodness? Kindness? Moving away from always trying to be right to attempting to understand? You may not see change right away, but, on a foundational level, it feels like a better way to move through life.  It seems like a more appropriate response to life’s weightier circumstances.  It seems like a way through when we’d really just like to go around and avoid altogether.  Life, however, can’t be avoided, can it? We must all stand and be counted at some point.  And, if we have vulnerable people depending on us to care and advocate for them, then our reasons for standing up become that much more significant.  Defining ‘goodness’ isn’t easy, is it?

Take my laptop away for a week and this is what happens. Ontology strikes again.

 

A Blessed Reality

Sometimes I think that this blog, in another five years, would be an interesting medical document, sans all my nonsensical or rant-like posts, because it documents the progress of a neurodegenerative/neurodevelopmental disease in someone who was in the prodromal stage at age 10.  That’s extremely rare.  When I wrote my first post, everyone thought that Grace had bipolar disorder.  Grace’s psychiatrist is observing the disease progression for a certain development.  Will she remain in the same spot of the schizophrenia spectrum placing her at “schizoaffective”, or will she move down as the disease progresses placing her at “schizophrenic”? Does it matter? They are both treated exactly the same in terms of drug therapy.

It matters in terms of diagnosis, and it matters in terms of progression.  After Grace’s latest hospital adventure, this is what I’ve learned.

The first thing, however, I want to address is this: If you are reading this as a caregiver or someone seeking more information regarding someone who has or might have a schizophrenia spectrum disorder, then I must state the following–Learn to tolerate not knowing.  It is such an uncomfortable place to be.  It is stressful.  It provokes profound anxiety.  It can be scary.  It might even cause you to question your own perceptions and sense of what is real.  And I want you to know that I understand.  From one caregiver to another.  I know how truly hard that is.  You just want an answer.  “Someone please just give me a diagnosis dammit!”   Yet there is none to be had.  It can take two to four years to get an accurate diagnosis particularly in children and adolescents when it comes to psychotic disorders and mood disorders.  Why?

There are a plethora of reasons from gender bias to over-diagnosis to physician caution to under-reporting of symptoms to poor access to good mental healthcare and early intervention to untrained medical staff to just good old-fashioned stigma–even in the medical community.  Grace and I have bumped into all of it since we began our journey.  Truly good physicians and truly good hospitals are actually not that easy to find.  It takes tenacity and the gift of long-suffering to make your way through the labyrinth of the American healthcare system with or without health insurance because there are gatekeepers everywhere whose sole job is to deny access to much needed care–even if you have health insurance.  So, it’s necessary to get comfortable in that place of uncertainty.  Make friends with it.  Accept it into your life.  Practice saying this dialectic: “I can experience peace in this moment even though I am living with uncertainty.”  Peace and uncertainty tend not to go together.  That’s why the idea of being peaceful while uncertain at the same time is a dialectic (That’s a little taste of DBT).

The second thing I want to address is the truth about the brain in the context of neurology and psychiatry, and the best way I can illustrate this is with a personal story.  I have epilepsy.  I had seizures as a small child.  I didn’t know that I was experiencing seizures, but I knew that something was happening to me on the cusp of sleep.  I also knew that it was scary.  I usually wet the bed during the events.  I had heard the word ‘schizophrenia’ a time or two when I was very young, and I knew that ‘schizophrenia’ was a bad word.  My grandfather had schizophrenia.  He was in a VA hospital in California.  He had been in that VA hospital for forty years.  FORTY YEARS! I thought that maybe what was happening to me at night was schizophrenia, too, so I never told anyone.  I didn’t want my father to put me in a hospital and leave me there.  So, I would get up in the middle of the night and wash my sheets to hide it from my mother–at seven years old–and I kept my seizures a secret.

I eventually grew out of the seizures, but adolescence can activate latent epilepsy as can stress.  An extraordinarily stressful event happened in my life when I was 18.  I was the victim of an abduction.  Abductions are rare, but they do happen.  Human trafficking is a hot topic now.  I had never heard of human trafficking in 1991, but it was going on even then.  The man who took me was a human trafficker.  I started having seizures again when I was in captivity due to the stress.  In the end, that is how I escaped.  I figured out that I could fake seizures, and it would freak out the man who took me.  He would leave me alone in the room.  That gave me time to think about how to get away because he wasn’t lording over me.  My seizures saved me.

Post-captivity, however, I was a mess.  It takes a long time to recover from a trauma like an abduction not to mention being in captivity, prepped for auction, and everything else that implies.  I was experiencing a combination of psychogenic and complex-partial seizures quite often.  The psychogenic seizures were rooted in PTSD.  The complex-partial seizures were simply due to an irritated brain exacerbated by extreme stress.  I ended up in the Columbia-Presbyterian Epilepsy Center in Manhattan for an extended VEEG.  I hated it there.  I was 19.  I was tired of everyone trying to get into my head.  I was tired of being labeled as “damaged”.  I was tired of being “the victim” or the “girl who got away”.  And, I was so tired of everyone feeling sorry for me and looking at me like I was never going to have a good life because of what I survived.  I must note here that the means by which the staff at the epilepsy center tried to provoke a seizure in their patients were unethical.  The psychiatrist on staff tried repeatedly to force me to relive events of my captivity against my will under coerced hypnosis.  I was not a compliant patient because I did not want to relive those events.

So, I made a bad decision as 19 year-old girls often do.  I faked a seizure to get out of the hospital.  I felt so cloistered, trapped, and unsafe, and feeling trapped was a trigger for me.  I couldn’t tolerate it.  It worked.  The psychiatrist at the epilepsy center told me during my discharge interview, “You know, you’re an attractive girl.  That ought to be enough for you in life.”  I recall wanting to slap him across the face.  I had just come from an environment that had thoroughly objectified me.  Being objectified again just didn’t feel good.  So, I left the epilepsy center with a diagnosis of PTSD with psychogenic seizures i.e. “crazy”.  The neurologist told me that I was a hysterical young woman who needed to get a hold of myself regardless of what had happened to me.  So, at 19 years-old, what was my final diagnosis? Attractive but crazy.  Seriously.  That was the final assessment.

I felt…angry.  Like everything I had just endured was my fault.  How would they like to endure being trafficked and then stalked by their perpetrator after getting away? Would they enjoy living in terror and fear? Would they enjoy police interviews? Would they enjoy looking over their shoulder constantly, wondering if he was going to come back and make good on his promise to kill? I felt like I was living in a weird action movie.  Bruce Willis could step out at any time and rescue me.  Yeah, Bruce Willis! It was the 90s, y’all!

I compartmentalized everything and went back to college and proved everyone wrong, but I wondered all the while if I really was crazy.  Every once in a while I would have a seizure, and I would believe that it was just “hysteria” like the neurologist in Manhattan told me.  I would ignore it and keep going.  Years later, however, when I was married and pregnant I started having seizures again, and, this time, I could not ignore it.  I didn’t want to tell my OB because I was afraid that I would be called hysterical again.  I also didn’t want anyone to know that I had been trafficked.  I didn’t want a PTSD diagnosis to go on my medical records.  PTSD is a diagnosis that can taint a doctor’s opinion.  It contributes to stigma.  If you show up with a headache or a pain complaint, they’ll look at your records and see that PTSD diagnosis and wonder if you’re drug seeking.  A mental health diagnosis changes everything.  I knew that.

The seizures worsened.  I had to say something.  I could fall.  That could hurt the baby.  I had to be honest for the sake of my unborn child.  My OB listened.  She was compassionate.  She didn’t judge.  She sent me to a neurologist.  He was a crusty curmudgeon who, once again, found nothing wrong with me.  I left feeling crazy.  My OB listened again.  She sent me to another neurologist who, according to her, was the smartest woman she had ever met.  She told me that if there was anything wrong with me, then this woman would find it.  Honestly, I was terrified.  Her name was Jane.  She told me to call her Jane.  She had a resident with her during our appointment.  I was trembling.  She did all the neurological testing that everyone had always done.  She asked me to walk across the room for her, and while I was walking I heard her say to the resident, “Did you see that?”  She stopped me.  “Jules, stop.  Could you turn around and walk towards me again?”  I did so.  She said it again.  “Did you see that?”  I immediately felt anxious.  She approached me and put her hand on my shoulder.  “You have temporal lobe epilepsy.”  My knees almost buckled.  She helped me sit down.  I started crying.  “I’m not crazy?”  She patted my hand.  “Oh no, you are most certainly not crazy.  Whoever told you that?”  I just sat in her office and wept.  I couldn’t stop.  Years of believing that I was some hysterical girl were flowing through and out of me.  I could hardly believe it.  “How…how…” I snurped.  “How did I know?” she asked.  I nodded.  Your left hand postures in a very particular way when you walk.  Only people with TLE will do that.  I can probably tell you exactly where the problem is in the temporal lobe as well.  It’s probably idiopathic.  I bet if I did an EEG we wouldn’t find anything.  It’s probably structural.  You’re wired funny, but you definitely have TLE.”  I stared at her in disbelief.  “But I’ve seen countless neurologists! No one saw this? How could they have missed it?” She winked at me and said, “They weren’t looking for it.  I was.  Jules, you have been sick for a long time.  It’s time to get you better.  We need to make sure that your brain gets better so that your pregnancy goes well.”

**********************

These experiences delineate a certain reality.  The presence of a psychiatric diagnosis does not preclude the presence of a neurological diagnosis.  Now, more than ever, psychiatry and neurology are almost complementary specialties because the manifestation of a psychiatric illness most often begins in the brain.  As Grace’s neurologist said to me on the phone yesterday, “It’s all one brain.  It’s just a question of who treats what.  Is it neurological in nature or psychiatric in nature?”  This was not a common view twenty years ago.  Neurologists just kicked a patient to the curb who was experiencing psychogenic seizures.  The problem in doing that is that psychogenic seizures are still very real to the patient and hindering their ability to live a full life and even earn a living.  They still have to be treated.  It’s just a matter of how.  What is best for the patient?

I don’t share this story to garner sympathy or attention.  I share this to make a point.  Every person with a neurological diagnosis will most likely have some kind of story to tell as well.  Why? Because life has a way of kicking the shit out of us.  I don’t know one person who hasn’t endured abuse of some kind or faced loss that has left a scar.  We will suffer in this life.  That is the one thing that is guaranteed.  Death, taxes, and suffering.  I also don’t know one person with a psychiatric diagnosis who doesn’t suffer from at least one neurological diagnosis.  What might that be? At a minimum, migraines.

PAUSE: People should not be self-medicating their migraines.  If you get migraines, see your doctor for the love of baby hamsters! Do not listen to the ads that say, “When I get a migraine, I just take X brand of analgesic, and I feel better! Take X brand of OTC analgesic, and you’ll be back on your feet again, ready to put your nose to that grindstone in no time!” Why? Migraines leave white matter lesions on the brain.  Yep.  They do.  Those white matter lesions also put you at risk for stroke later in life.  Isn’t that a reassuring idea? I know I sleep better at night knowing I have small white spots all over my brain! Alas, this is something you want on your medical record, and you want to be treated by a neurologist! This is what they do–even if you only get migraines a few times a year.  It does not matter.  Something is wrong with your brain.  Get it checked out! For your health and for your future.

PLAY: Neurology and psychiatry, however, intersect like a Venn diagram.  I have heard Dr. Awesome say numerous times that some of Grace’s issues belong to neurology, and I’ve heard Dr. Fabulous say just as many times that a few of Grace’s issues probably belong to psychiatry.  Both of these outstanding doctors are trying to figure out Grace’s brain.  Both of them are attempting to problem-solve and decide, “Is this brain problem mine or hers?”  Dr. Foxy even shrugged at me once and said, “What? It’s all brain stuff.  Schizophrenia.  I mean, it could be mine.  It could be a neurologist’s.  It’s the brain.  Heck if I know…”

What I am describing here is some evolved medicine in action.  When you have a neurologist and a psychiatrist talking to each other about the care of a patient, you have achieved something.  And, that’s what is beginning to happen in Grace’s care.

Dr. Fabulous noted that some of Grace’s symptoms could either be:

  • atypical migraine
  • possible beginnings of catatonia
  • or both

You can imagine that I was alarmed at the idea of catatonia in a 13 year-old girl.  I remembered how I was treated when I was 19.  My symptoms were dismissed as entirely psychiatric when there really was a neurological foundation.  I did, in fact, have epilepsy, but the doctors were too taken aback by my shocking history.  They made an assumption which was: “A survivor of human trafficking would have PTSD.  Psychogenic seizures are common to PTSD ergo her presenting symptoms are nonepileptiform.”  Good doctors never make assumptions.

A patient with schizophrenia can have legitimate neurological symptoms even if the presentation is complex.  A patient with a complex history or even a traumatic history can present with psychogenic seizures, but that doesn’t preclude the presence of epileptiform events as well.  A patient with a mental health diagnosis can present with neurological diagnoses.  The presence of one does not preclude the presence of the other.  Let’s make it more interesting.  A patient with a complex mental health diagnosis and a traumatic history can also present with neurological symptoms.  I would assert that the more complex the mental health diagnosis and personal history of the patient, the more likely the patient is to have a neurological condition.  The brain is complex.  Patients ought to be treated with dignity and never stigmatized or judged because they were the victim of a violent crime or originated from a highly dysfunctional or abusive family.

As I learn more, I feel as if I know less, but I do know one thing today.  I once hated the memory of being trapped in that epilepsy center.  I hated having the electrodes glued to my head.  I hated the cameras.  I hated not knowing what was wrong.  I see now that it makes me the perfect mother for Grace, and there is redemption there.  I know exactly what she’s going through because she, too, had to sit in a room with electrodes glued to her head while cameras filmed her.  She, too, didn’t know what was wrong with her.  She, too, had to sit in a room while people talked about her like she wasn’t there.  And, she, too, had to listen to a doctor suggest that perhaps her presentation was entirely based in her psychiatric condition.  I know how that feels.  Boy, do I know how that feels.  You feel like you’re crazy.  You feel completely ashamed.  You feel like you want to crawl into a hole and die.  Truly.

So, I knew how to advocate for Grace in that moment.  I knew how to suggest alternative theories.  I knew how to ask better questions, and I knew what to say to Grace when she looked like she wanted to cry because I knew what I would have wanted someone to say to me had someone been there for me when I was 19:

“Doctors have to think out loud sometimes.  Right now, we’re doing what Dr. House does on that show.  This is called differential diagnosis.  It’s a diagnosis of exclusion.  Because we don’t know what is wrong, we have to find out what is not wrong.  That’s why your doctor drew all that blood from you.  The more information we have, the better.  It’s also why we are throwing out all these ideas.  I know that what you feel is real.  I see that and so does your doctor.  We all believe you.  Never question that.  This is real to you.  So, it’s real to me.  And, I will do everything I can to help you until you feel like yourself again and so will your doctor.  That’s why she admitted you.  Know that we believe you.  Even if we can’t measure it or test it, we will figure out why you feel so sick, and then we will make it better.”

We are not entirely sure what is wrong with Grace, but, when Dr. Fabulous and I spoke yesterday on the phone, we reached a murky conclusion.  It’s either neurological or psychiatric.  Or both.  And, isn’t a miracle that medicine and the attitudes therein have come so far that a neurologist can call the parent of a 13 year-old girl with a schizophrenia spectrum disorder, admit that she essentially doesn’t know, and still commit to her long-term care without blaming the patient?

I am beyond grateful on this night, the eve of Mother’s Day.  There is a lot we don’t know, but I know I will sleep tonight with a heart full of love and thanksgiving.

To all of you out there who are a mother to someone be it in reality or in spirit, offering your nurturing and care, your steadfast love and patience, and your faithfulness even when you are weary and done, I wish you a Happy Mother’s Day.  May you be blessed and affirmed in some way that is uniquely meaningful to you, and I hope that as you make your way with the special people in your lives, connections are made for you, too, that shed light upon the darker spaces in your memories proving to you that you didn’t occupy those places for naught.  You walked that road so that you could lead someone else through the same terrain later on.  That’s the wonder of redemption.  You’re someone else’s mapmaker and field guide, friend and comforter, and alchemist, turning the emotional lead into experiential gold.

It’s a high calling but so worthwhile.

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What I would like to do tomorrow…

 

 

 

 

 

 

 

 

 

 

My Favorite Color

Grace is in the hospital again.  I think we’re just one room over from the room she stayed in last fall.  The staff is familiar.  We’re even watching the same movie–“Labyrinth”.  There’s something comforting about watching David Bowie and his ridiculously tight pants.  Milly says that they are “too outlining” and refuses to look at him when he sings and dances.  It’s true.  They are too outlining.

I’m not sure what’s wrong this time.  Diagnostically speaking, it’s like being in the room next to the one we stayed in before.  Last time, her neurologist was specifically looking for seizure activity.  This time? Well, I guess she’s looking for that, but the presentation is more complex.

Grace started complaining of dizziness about two weeks ago.  With a kid like Grace, I have to just listen to her somatic complaints, take note, and send her on her way.  Because she is so anxious and fearful that her perceptions of reality are wrong, she can work herself up very quickly when she experiences anything that is not “normal” for her in the way of physical symptoms.  She is hyper-aware of her body and how it feels to be in her body.  If she wakes up with a new freckle on her nose, she notices.  And, she freaks out! “What’s this? Is this normal? Is this okay? Am I ill? Is this a rash?”  If her stomach aches, I hear about it.  If she has growing pains, I know about it.  If her eyes itch or her knuckles crack or her hair has grown, I know about it.  She makes sure that I know about everything.  This isn’t necessarily bad.  It’s better that she self-reports vs. keeps secrets.  I’d rather know that her fingernails grew in the night than have her feel isolated.  The issue for me is that I need to know what to file under Not Important and what to file under Could Matter.

With a symptom like dizziness, it might not matter.  Low blood pressure runs in my family.  Yesterday, Grace’s was 80/55.  Is that low? Sure.  Is that normal for our family? Yes.  Do a few of us get dizzy often enough to notice? Yes.  Have we ever almost fainted? Yes.

Grace is also on a lot of medications that can cause dizziness.  Mix possible side effects with low blood pressure, and that might cause dizziness.  Once again, I have to pay attention, take note, and send her on her way.  The problem arises when dizziness becomes more than dizziness, and that’s why we’re here.  Again.  Within a week, Grace’s dizziness morphed into dizziness+seeing lights+disorientation+staring+falling+extreme fatigue all within a matter of minutes.  As of Saturday, she was experiencing about four events per day.  I was in contact with an on-call neurologist all weekend.  We increased her Topamax.  No joy.  I gave her ibuprofen suspecting an atypical migraine in hopes that it would do something.  Nothing.  Dr. Fabulous called us into the hospital today baffled by the symptoms.  We spent a full hour with her today which resulted in an admission.

She suspects atypical migraine as well so I wasn’t far off in my suspicions, but she wants to be absolutely certain that she’s not missing seizure activity, hence, the VEEG.  She also wants to check Grace’s liver, kidneys, and, per my suggestion, her pancreas.  Abilify likes to get after the pancreas.  It is one of its primary side effects.  So, if she’s going to do a panel, then why not include the pancreas? She agreed.  Then, because Abilify can affect the heart’s QT interval, she’s doing an EKG as well.  If the heart’s QT interval is off, then one might experience dizziness.  Some of these atypical antipsychotics like Abilify, while amazingly effective, can have dangerous side effects.  Dr. Fabulous acknowledged that she was fishing with the QT interval idea, but she’s trying to be thorough.  This is differential diagnosis in action.  I feel like I’m living in an episode of “House” but without the narcissistic, high-functioning sociopathic diagnostician.  Thank God for small miracles.  Honestly, I’ve had enough of those kinds of doctors in my time.  Unfortunately, they abound but not here.

So, we sit in our room in our home away from home, and I’m relieved to say that our home away from home, for the time being, is not the Behavioral Health ER.  I can’t fight a war on two fronts, you know? At least she’s stable emotionally, and she isn’t experiencing psychosis.  How much harder would it be if she were experiencing breakthrough psychosis while experiencing these symptoms?

In the end, it’s my prediction that Grace will be diagnosed with atypical migraines in addition to transformed migraines, and I have a feeling that there is no easy way to treat them.  I’ve had two atypical migraines in the past, and there was no clear treatment.  They were triggered by a certain brand of decaf coffee which I never drank again.  Atypical migraines are very weird.  They tend to lack the classic pain one usually experiences with a migraine.  I was also very disoriented during the atypical migraine, and, apparently, I behaved strangely.  I do recall that it felt something like the aura that precedes a seizure.  There was slight nausea, strange feelings in my limbs, and I was so exhausted when it passed that I fell asleep on the couch for over an hour–with small children present!  I was completely oblivious to my environment and almost unable to recall what I’d said and done during the event.  Clearly, it was neurological.  My neurologist ordered an MRI and EEG after both events and ruled them atypical migraines when both tests came back “clean”.

It won’t surprise me, therefore, if this is what is going on with Grace.  Migraines are inherited.  There is a 50% chance that my daughters will develop migraines.  So far, that is proving to be true.  Doireann, Milly, and Grace all have migraines.

Dr. Fabulous admitted today in the middle of our long brainstorming session that she wasn’t sure how to go about treating atypical migraines like Grace’s–if that’s what she is experiencing.  They are hard to treat particularly when they’ve come on with a vengeance.  She also told me that, as a neurologist, she lives in the gray area because so little is truly understood about the brain.  What works for adults doesn’t often work for children because the pediatric brain is the developing brain.  We talked about migraines generally, and she confessed that migraine etiology is still up for grabs in the medical community.  For those of us who suffer with migraines or who care for a migraineur, this isn’t a shocker.  Sometimes you’ll hear a neurologist claim that a migraine is vascular.  The blood vessels expand or contract pressing on the nerves in the brain.  That’s an oversimplified explanation.  Then, you’ll hear someone say that the brain is hyperexcitable.  That’s the cause.  Or, you’ll hear someone say that a migraine is really on the epilepsy spectrum.  Now, that I can believe.  I have complex-partial seizures.  Thankfully, I haven’t had one since I delivered Grace, but I have observed that I often feel post-ictal during a migraine.  Statistics show that people with seizure disorders are more likely to have migraines than those who do not have seizures.  Dr. Fabulous explained that the medical community doesn’t know whether those with seizures get their own spectrum, and their migraines are unique to their brains; or, are migraines and seizures all on the same spectrum? This is what we discussed today among all the other things.

How does this relate to anyone who might read this? Well, here’s what I know:

  • The risk for developing schizophrenia increases when epilepsy runs in the family.  How’s that for a statistic?
  • Epilepsy and migraines have similar mechanisms that are known to be related to genetics.  In other words, if epilepsy runs in the family, then it’s likely that migraines will as well.

So, if the risk for developing schizophrenia increases when epilepsy runs in the family and those with epilepsy are at risk for developing migraines particularly when there’s a family history of epilepsy, then migraine with aura (MA) is most likely going to be a problem for those with schizophrenia who have a family history of epilepsy.  Here’s the kicker–migraines and other mental health conditions go hand in hand:

Frederick Taylor, M.D., director of the Park Nicollet Headache Clinic in St. Louis Park, Minn., said that migraine co-morbidities “depression, anxiety and other disorders” affect 83 percent of migraineurs and explain 65 percent of their inability to function in life, more than the pain itself.  (Migraines Often Linked to Mood Disorders)

What does this mean for us? Well, I think it means that mental health issues are not just “all in our heads” but are, in fact, “all in our heads” at the same time! The fact that we have the director of a headache clinic calling anxiety and depression “migraine co-morbidities” reveals this fact–the brain is the problem.

Not to beat a dead horse, but perhaps this horse just isn’t dead enough.  Mood disorders, schizophrenia spectrum disorders, anxiety, and depression are not “feelings”.  They are not choices.  They are not things that people can change by pulling themselves up by their bootstraps any more than a person having a migraine or a seizure can stop that migraine or seizure at will.  The brain is experiencing something that is causing a malfunction, and that malfunction is manifesting itself in behaviors, disordered thoughts, disordered moods, or even in skewed perceptions resulting in psychosis just as the brain manifests another sort of malfunction in the presentation of a seizure or a migraine.  Is it merely coincidental that all these disorders are genetically related? No, it’s not.  Is it more socially acceptable or “comfortable” for someone else to have a migraine rather than a psychotic episode? Would your boss have an easier time allowing you to take a day off if you told him that you had a seizure that morning vs. a manic episode? The source of all these issues is the same–the brain.  Society’s perceptions? Well, now, that’s not so black and white, is it?

Grace’s journey and our family health history are evidence that genetics affect the brain and how it behaves.  The idea of stigma is ludicrous in light of the evidence.  It makes no sense to me.  I honestly can’t understand it.

So, we sit here in the hospital.  I watch her brain waves.  The nurses enter and exit.  Maybe someone will figure it out.  Maybe they won’t.  Life will go on.  Some people think that the ocean is the final frontier.  There’s so much we don’t know.  There’s so much left to discover.  Me? I think it’s the human brain.  As much as we know, we only know a speck.  In a hundred years from now, we’ll know more, but I wager we’ll still be saying, “There’s still so much we don’t understand.”

I don’t know why I find comfort in the mystery.  Alas, I do.  It means that it’s okay not to know, and right now we don’t know a lot.

And, for now, it has to be okay not to know.  We have to learn to tolerate the distress of not knowing.  That’s also part of being a caregiver and a human.  Learning to be comfortable with the mystery.  Learning to flourish in between the black and white.

Learning to know what can be known even when there are no answers.  Learning to accept good enough even when you know that good enough isn’t really…good enough.

Learning to love the gray.