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.

 

 

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7 thoughts on “My Favorite Color

  1. THIS–“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.” Again–you “get it.” And again, I wish others did.

  2. I never thought of the pants as outlining, I suppose they were.

    Learning to love the gray, I had to do that after my stroke. It is a difficult, troubling shade all to often shifting and never remaining stable. You manage so well, your calm in the face of storms. I wish only that you could have any peace in all this, that any answers and help could be forthcoming.

    • Those were some tight pants!

      I’m sorry that you endured a stroke. I can only imagine that things do change after that. Thee is a part of me that loves black and white. It’s easier, but every time I leave the gray I’m thrown back into it. It seems to apply to all things. People, events, health. So, I guess I accept and go with the flow. I could fight it, but then I’ll still be dragged along anyway. That’s no fun.

      I just found coffee! And it’s not bad hospital coffee. I’m feeling pretty happy about it right now. 🙂

  3. We also experience our daughter dropping to the floor when she dissociates. She also experiences an aura and cluster migraines when this happens. It happens less now that she is taking clozapine.
    It’s so disconcerting…our thoughts are with you. Please let us know if they discover anything. I’ve always been baffled by this and appreciate that you have shared this.

    • That IS disconcerting especially if there has never been a history of seizures in your family! It’s scary, I’m sure. Well, she was discharged today with a big ol’ question mark and a “We’ll see what happens.” If she gets better with an increase in the Topamax, then we’ll know that it’s atypical migraine. The tearing in one eye is the giveaway. Also, she does have lower blood pressure so we were instructed to force fluids and salty foods in order to maintain a higher BP and look at diet. I’m a bit of a diet shark. We are already GF, but instructions to raise the protein and see to it that she eats small meals six times a day which include protein and fat were given. She only weighs 85 lbs. I’ve got other ideas there as well. So….we shall see.

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