More Data

Grace was in the rapids of self-harming ideation for about a week.  It was exhausting.  She was also hallucinating.  It came out of nowhere.  Combine that with extreme irritability, and it just makes for a very stressful period of time.  I would send her to school and practically melt into my chair.  I went for a week without getting out of my pajamas.  Sure, I showered, but I just didn’t have the stuffing to get dressed.  I knew what was coming home to me.

Then, on Wednesday, she got a migraine.  A bad one.  The hallucinations stopped.  The ideation went away.  The irritability disappeared.  Grace takes 100 mg of Topamax daily to prevent migraines.  She started taking this medication last November.  This was her first breakthrough migraine.  Her migraines usually last about seven days, and they do not respond to over-the-counter (OTC) abortives.  It won’t matter if I give her 800 mg of ibuprofen with coffee.  Nothing puts a dent in these monsters.  She will languish for a solid week in the dark until they subside.  The weird thing about them is that I used to be able to predict the onset of a migraine based upon Grace’s mood.  Usually she was deeply depressed with self-harming ideation.  She would hit the bottom, and then BAM! The migraine would start.  After the migraine, she would go up towards a mania.  The migraine was always the tell.  In the background was her psychosis always simmering away.  So far, no doctor has been able to explain the migraines to me.  Why do they last for seven to nine days? Why do they appear in the middle of a mood cycle? Why are they still happening even though she’s medicated?

Grace never had migraines until after her first psychotic episode.  The good news is that Topamax works.  Clearly, something neurological is going on.  Secondly, the Toradol injection that she gets at the hospital for her migraine does abort the migraine.  We went into the hospital last Thursday so that Grace could get an injection, and within five minutes her migraine was much better.  Her migraine was completely gone within 24 hours.  No languishing in pain.

The Toradol does interact a bit with the Lithium but not substantially so it can make Grace a bit sleepy.

All this is to say, if you have a loved one getting debilitating migraines with a schizophrenia spectrum diagnosis or bipolar disorder, and you’ve removed all the migraine triggers, then you have options.  Plus, you are not alone.  First, find a neurologist that believes you.  We went through two pediatric neurologists that refused to believe us.  One even implied that I might be drug-seeking and that Grace was a girl who was just anxious and couldn’t tell the difference between a tension headache and a real migraine.  Awesome.  Secondly, get rid of all migraine triggers that you can control.  MSG, tyramine, caffeine, and soy are big food triggers, and poor sleep hygiene is another issue.  Of course, if you’ve got a child with a developmental disability or any mental health issue, then the sleep issues tend to be affected.  Sleep hygiene goes out the window.  We do what we can and avoid perseverating on what we can’t.  Thirdly, track those headaches by keeping a headache calendar.  When you get into that neurologist armed with solid data, it’s a heckuva lot harder to blame it on food and poor sleep hygiene if you’ve got a documented pattern with documented symptoms.  Where is the headache being experienced? Behind the eye on the left side? On the back of the head? On the right side of the head? Is there nausea? Is there nausea and vomiting? Does the child feel better after vomiting? Is there photophobia (an intolerance to light)? Does it have to be quiet during the headaches? Is there an aura before the headache? Does the child see lights or smell anything? Does the child hear anything? Grace would hear music and see lights before her migraines.  She had a definite aura.  There are so many different types of migraines.  The more information you can record the better.

Lastly, don’t stop advocating for your child.  Find the right people to be on your care team.  I almost gave up until one of Grace’s psychiatrists insisted that I get another opinion.  I asked him if he knew a good pediatric neurologist, and, as it turns out, he did.  Grace’s neurologist, Dr. Fabulous, is the one that he recommended.  It also helped that he knew her personally, and, when I called the speciality hospital, I name-dropped–“So, Dr. Klerpachik wanted me to call on behalf of my daughter.  He really thought highly of Dr. Fabulous and thought that she might be able to help my daughter.”  That got my foot in the door.

The neuropsychiatric disorders are just weird.  A lot of research is being done, but it’s not enough.  Neurodegeneration is happening.  I do wonder if that’s what might be behind the migraines.

Not a great thought, but one must consider all the variables even if they are unpleasant.

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4 thoughts on “More Data

  1. First of all, I love the new look of your blog! It’s fun! But, I am very sorry to hear that Grace is still very much in the thick of it. Praying for her (and you since you are carrying most of the weight.)

  2. Thank you for addressing migraines. Cluster Migraines/Aura (preceding psychotic breaks) are an issue we deal with as well. Our neurologist suggests 250 to 500 mg magnesium each day and it has been helpful in terms of reducing the frequency of migraines as well. I’m so glad you mentioned the headache calendar…a must. Thanks for taking the time to walk people through migraines/mental health…lots of beneficial information in this post.

    • The magnesium is a good suggestion. I have Grace taking that. I take it. I get them as well and take 200 mg Topamax daily. It’s interesting that your daughter gets migraines as well. Hmmmm….I find very little in the literature about this. I think it’s frustrating! I know that an increase in chocolate cravings points to magnesium issues. And, I cut out chocolate after that whole kidney stone thing last August which was actually caused by Vitamin D, and I find that I can’t eat much chocolate. Makes me weepy. So…now it’s cal/mag/potassium supplements. Same for Grace. Ugh…I hope your daughter has relief because migraines are just a plague!

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