We decided that the rule-out process was easiest to start at the idea that Oia was experiencing migraines and perhaps auras. So, to treat for migraines, Oia has been taking a quarter of an Amitriptyline pill each night. These pills act as a preventative to headaches. They are only about a frog's hair bigger than a birth control pill so quartering them with a pair of scissors isn't the easiest thing to do. Half the pill turns to dust and maybe the rest is usable, if you're lucky. We're going with it though... just following doctor's orders.
To date, Oia has not had any more inconsolable crying spells with any "off", discomfort-like behavior. However, she has gestured to the left side of her head and said "ou" as in "ouch" at least once every day since then. I have called the nurse at the neurologists office to discuss this with her. She said it still sounds like Oia is having headaches and suggested we up the Amitriptyline dose to half a pill and see if this dose eliminates the "ou" complaints. Last night was the first night of the new dosage and the first thing Oia said to me this morning was "ou" while holding her hand over the left side of her face. Is it eye related? Brain related? Hell I don't know, could it be a toothache? I'm grabbing at anything. It's still a mystery.
We have a follow-up with neurology scheduled in three weeks. We'll see where this road leads us at that time. There has been talk of scheduling an MRI and/or an EEG so we're playing limbo until this appointment. The last MRI Oia had was at the age of 7 months and the last EEG was in early '09 (I think). It may be time to get an updated baseline now that the Princess is 4.
In the meantime, my eyes are wide open. I'm constantly scanning her every move for a clue as I'm convinced this must be something. Maybe I'm making a mountain out of an anthill but it's always easier to be safe than sorry. She's our girl after all. But seeking the silver lining... Oia is still happy, busy, full of rotten, and the crying episodes have not returned. That has to be a good thing.
What about cluster headaches?
ReplyDeleteThey are only on one side of the head and feel like they are behind the eye. They are soooooo painful and they last up to two hours and then vanish. You can have multiple in a day and they normally come at similar times of the day. They are on again off again. So you can have them for 4 weeks and then nothing for 6 months and then they reappear.
Finding a diagnosis was a challenge for us because nothing is abnormal on EEG, MRI, CT etc. And it is a matter of medication for elimination. The only thing that stops them in their tracks is Imitrex, sometimes Maxalt dissolvable. Otherwise we currently use Topamax as the preventative.
Glad Oia hasn't hadany additional crying spells and I think it's great she is able to communicate some of her discomforts with you! You may already have tried this, but they make pill cutters/crusher (two in one). We had to split very small pills and put in formula with Ava and this little contraption worked really well for us. Most local pharmacies carry them. Good luck with the upcoming appointments!
ReplyDeleteI myself took Amitriptyline for several years pre-Caleigh. It made me somewhat sleepy until it was in my system for awhile. It also took a couple of weeks before I noticed any results. Imitrex and all the other migraine meds didn't do a thing for me, but the Amitriptyline stopped the headaches for good. I'm pretty sure mine was hormone related.
ReplyDeleteSince we found out that Caleigh is in premature adrenarche, I've read a lot about the brain and hormone imbalances. It might be something to look into if the meds or scans don't show anything.
Hoping there is a solution soon. The guessing and watching is exhausting, I know. Oh, and I love Oia's feet in the header :-)
Arrgghhh! On your behalf. So frustrating!! My daughter's favorite therapist says Mom is always right - always - so you are right to be so vigilant.
ReplyDeleteLove the new header! That girl has some cute feet.
ReplyDeleteIve been waiting for this update. I'm glad she hasn't had any more spells, but how frusterating to know she's getting some sort of discomfort somewhere. Hoping for answers for you soon!
HI EVERYONE!
ReplyDeleteI WANTED TO COMMENT ON THE MIAGRAIN THING.. THEY ARE VERY PAINFUL! MINE CAN LAST ANYWHERE FROM A FEW HOURS TO TWO DAYS.. I HAD ONE LAST NIGHT AND IT WAS UP THE BACK OF MY NECK AND OVER MY RIGHT EYE.. IT WAS SO BAD THAT IT MADE ME FEEL SICK!
I HAVE HAD THINS FOR A LONG TIME AND ALL MY DOCTOR SAYS IS IT'S THE MUSCLES OR THAT IT'S HORMONE RELATED.. I TOO WANT ANSWERS BUT I AM RATHER CHICKEN TO TRY NEW MEDICATION BECAUSE OF ALL THE SIDE EFFECTS.. I TOO AM A PREMIEE
MELISSA
I get 'em too. I take amitrip(lol) also. I'm going to throw something different out there: Oia is in school- is there an increase in visual demand? Not necessarily acuity- demand that she focus and interpret more?
ReplyDeleteThat contributed to my migraine pain. Also change in diet (school lunch/snacks) or change in stress - caused by increased visual demand- all could be a drop in the migraine-causing-bucket.