Friday, December 21, 2012

Migraines in Your Stomach?

Quite a while ago, I learned a little about something called cyclic vomiting syndrome (CVS) by reading another blog.  CVS is a fun little thing that most often affects kids and causes seemingly random vomiting.  An episode will usually last anywhere from a few hours to a few days and consists of frequent vomiting and what some people describe as a "conscious coma" (basically looking and feeling awful).  Then it ends and after some sleep, the person feels completely fine again.  By happenstance, one of my friend's kids started having weird vomiting episodes and I mentioned CVS to her on facebook and it turned out that was what was going on.

Fast forward to mid October.  Sierra had these episodes of pretty severe vomiting and obviously feeling really terrible, followed by complete normalcy later in the day.  No one else in the family ever caught these "stomach bugs" and I was baffled.  Until a friend who had participated in that earlier facebook conversation said, "what about that CVS thing?" Huh.  That's a bit ironic.  After that point, she didn't have vomiting episodes though.

She did start having severe abdominal pain.  It wasn't near her stomach, it was always just above her belly button and she would gesture to the area with her whole hand, not a pin point spot.  She insisted it was just a pain, no burning or stabbing sensation.  She had no GI issues.  She had no fever.  If I palpated her abdomen there was no tenderness around her appendix or anything like that.  However, she was in tears, pale and curled up into a ball for several hours.  Then, just like before, she'd sleep for a while and she was fine again until the next episode.

A little research and a trip to the doctor later, and she was diagnosed with abdominal migraines.  As the name suggests, it's just like a migraine headache, except the pain is in her abdomen instead of her head.  Some people say this and cyclic vomiting are the same thing (CVS comes with vomiting, abdominal migraine does not) and some people say they're different.  I didn't ask for clarification from the doctor because it doesn't matter all that much, but she seemed to imply they are basically the same, or at least very closely related.

It's usually children that are afflicted with CVS or abdominal migraine and they often have a family history of migraine headaches (I don't have migraines, but there is a strong history of them in my family).  Sometimes the children develop migraine headaches instead as time goes on and I've also read meniere's disease (which is also in my family) is also related and can come up later in life.

So after all of this, I asked Sierra if I could write about this and she said she wanted me to be sure and talk about what treatment has been helpful for her in case there are other kids out there with the same thing. 

First of all, we had a discussion with her doctor about her symptoms and when they happened.  Diagnosis is made mostly from patient history, but also by excluding a few other, sometimes serious, possibilities, so don't skip an exam by the doctor.  For medication, we are starting out with zofran, which is an anti-vomiting drug with minimal side effects that's commonly used for hyperemesis and chemo patients.   Even when she's not actually vomiting, the zofran seems to help with the pain.  I suspect feeling so bad makes her tense, so getting rid of the nausea helps her relax and that eases the abdominal pain enough for her to sleep it off.

Second, her trigger is excitement.  She's had one episode triggered by stress/worry (the day we euthanized Angel), but all of the others have been before or after events that she was really excited about.  Trick-or-treating, visiting the new house before we moved, a girl scout activity, the Christmas parade...anything out of the ordinary that she's really looking forward to.  We have chosen to not give her a lot of notice about things when possible because the anticipation seems to lead to very frequent episodes.  If she doesn't have too much time to think about it, she usually has a mild tummy ache before the event, does fine during it, then sometimes crashes afterwards.  The doctor emphasized to her that it's normal to be excited about things and it's okay to be excited about things, which is important, I think.  She has started doing yoga classes with me which has helped her learn to calm herself down a little bit.  She can be excited without being off-the-charts, bouncing off the walls excited.

The third thing we've tried is purely "won't hurt and might help".  I've read about a theory that these episodes may be triggered by mitochondrial insufficiency.  Mitochondria are the parts of your cells that make ATP (the energy your cells use).  Mitochondria also happen to have their own set of DNA that you only inherit from your mother (and migraines are often inherited through the maternal line).  The theory goes that the mitochondria aren't working as well as they should, so they can keep up most of the time, but when more energy is needed (i.e. during bad stress, the good stress of excitement, menstrual periods or illness), they get behind and that triggers an attack.  Part of the recommended solution to that is to have frequent snacks that are high in complex carbs.  That's easy enough to do and isn't going to hurt anything.

Another mitochondrial solution that has shown some promise in studies is taking CoQ10 and/or L-carnitine supplements.  I'm not sure of all the possible interactions or contraindications for those, especially in kids, so we're not getting into that without our pediatrician's approval.   We have talked a little bit about what the next step may be if the zofran doesn't keep things under control and the doctor said migraine prevention meds, but those have side effects, so we don't get into that unless she's having 4-5 attacks a month that the zofran doesn't help and are keeping her from participating in activities.  We're not there yet.  If we get there, I plan to ask her about trying these supplements first if the side effects will be less than with the migraine meds.

Between the zofran and increased snacking on exciting days, we have things pretty under control right now.   She's having about 2 serious attacks (where she's non-functional) a month, but some zofran and sleep takes care of them.  She mentions "my tummy hurts", and then continues on with her day, on a much more frequent basis (again, always the same belly button area pain, not the upper left quadrant pain that might come with stress induced gastritis), so we carry the zofran with us all the time just in case.  We will just have to wait and see if this goes away over time, or if it ramps up as hormones get added to the equation.

If you want more information, the Cyclic Vomiting Syndrome Association has a pretty good website with ideas about dealing with CVS at school, the latest research articles, a hospital packing list (for people with longer episodes that may lead to dehydration and require being admitted), and other resources.  The message boards are helpful for finding ideas about what has helped other people. 

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