POTS: The Breakthrough We Didn’t Want

The Experience:

Last fall Tiara struggled with migraines than came weekly and lasted for day – often 5.  It  was horrible and debilitating and kept her out of school more than in.  We know now that migraines can be a part of POTS.  Since December she’s been on a medication that’s keep them away, mostly.  She was warned that she’d have breakthroughs.  We’d kept her on a minimal dose because it was working and then a couple weeks ago she got a nagging headache that wouldn’t go away.

It just sat there and teased her worsening a little, backing off, giving her that horrible sensitivity to all noises everywhere that isn’t a good thing in a family our size.  Her sisters aren’t quiet.  Her dog isn’t quiet.  Quiet is that strange thing that happens at night and is rarely experienced first hand.

We’d had company and prepared for school.  She was nervous, but excited and ready to find her normal, to meet people, to talk to teachers, and to escape this box that’s become her world.  Then the headache stopped teasing and twisted its ugly self into a migraine.  It wasn’t a 10 on the pain scale, nor a 9.  It hovered between a 6-7 (she’s gotten to be a pro at rating pain), and just stayed there.  Spots in her vision, sensitivity, that horrible crawling out of her skin sensation that people with migraines know too well

She missed the first day of school and the second.  On the second we tried one of our “breakthrough migraine” medicines and it made it worse.  On the third day we saw her doctor who prescribed another medicine that… didn’t work.  This was especially traumatic because she had to give up birthday tickets to see her favorite band ever (The Fray – we had amazing seats).  She cried.  I cried.  It had already been a long week.  Pain is stressful and exhausting.  Helplessly watching a your child in pain is also stressful and exhausting.

At this point we were feeling a lot like the Very Busy Spider gone awry because on the 4th day we headed to the ER to get another medication that made her stomach feel better, but not her head.  (The list of ineffective meds is getting longer by the day.)  On the 5th day, determined to kick this thing for good, we went back to the ER to get an IV.  This medication took the edge off slightly, but made her throw up and feel worse once she was home.  On day 6 we did nothing.  Lightening struck a house in our neighborhood and we had a potluck at a friend’s house in spite of the storm.  Tiara went to get out and see people, but left early because of the noise and pain.  On day 7 I called her neurologist who sent me his ER protocol for migraines.  Day 8, armed with doctor’s orders, I drove 45 minutes to the ER in Annapolis and handed over the paper.  The nurses were phenomenal.  We stayed for several hours.  She dozed in and out until her pain was at a 3, then we were sent home with a prescription for more.

She had to take her next dose within 4 hours of leaving the hospital, but the ER doctor wrote the prescription wrong, so the pharmacy didn’t have what was ordered.  I went to Walgreens, my favorite, but the one that wasn’t going to take my insurance for another couple of weeks.  Thankfully, they asked questions and listened and looked things up and saw the original neurologist’s order on my phone and they had it – the right thing, and I swallowed hard when shelling out $$$ for this drug, but my girl needed it NOW, so there was no hesitation.  We got home and she slept until I woke her up 20 hours later.

This beautiful drug + her other migraine drug + her POTS drug = one really drugged up kid.  So, now we’re on day seven of school and day 10 of a migraine that’s still hovering around a 3 – tolerable pain, but spots and sensitivity.  And she’s so drugged there’s no way she’ll be going anywhere.

This migraine is maddening.  Yeah, we finally have a solution.  We have a protocol for future breakthroughs, but we’re now into the second week of school and she hasn’t had her first day.   Yet another evening I’m tucking her in and planning for tomorrow hoping that this time it will work.  Another evening she’s hurting and I can’t do anything more.


The Symptom:  Migraines

The Lessons Learned:

1)  For serious migraines, your regular GP or pediatrician can only do so much.  We were told to go to the ER for migraines that are non-responsive to our current and over-the-counter medications.

2)  If you have a neurologist and don’t have a ER protocol, ask about one.  Pediatric neurologists who work with migraine patients usually have a specific plan of action that is different from something that a general ER doctor would do.  Your neurologist will have a plan specific to your case and take into consideration any other medications that you’re on.  This little piece of paper is gold when heading into the ER for a migraine and will save you future visits.

3)  Make sure that the prescription says exactly what the ER protocol says or take your ER protocol with you to the pharmacy.  I questioned it, the doctor said it was the same thing, but the pharmacist said otherwise.  Her mistake cost me $$ and time in getting the right medication to my daughter.

4)  Depakote is the more commonly known name for Valproic Acid which not all pharmacists will recognize.  It does react with Topomax to make the patient extremely dizzy and groggy which is not great with POTS patients.  It did take a full 2 weeks on the medication to completely kill the migraine.

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