Goadsby's Magical Receptors

*Let me start this post off with a disclaimer:  I am NOT in any way, shape or form a medical expert (or even a scientist.)  Everything in this post is based on my interpretation of what has been told to us by our magnificent team of doctors.*

She looked up just as I clicked ... oh, well

As many of you know, my oldest daughter, Samantha, has been suffering from a debilitating headache since January 3, 2012.  Her official diagnosis is NDPH (see this post for more details.)  She continues to be unresponsive to treatments, so last week we got to travel down to San Francisco for another course of DHE treatment--this time with her specialists at the UCSF Headache Clinic.

Things went well.  She reached the target dosage of the DHE (dihydroergotamine) and with a little experimentation, was not nauseous for most of that.  The doctors were concerned with that because nausea is an indicator as to the efficacy of the treatment--basically the more nauseous you are the less effective the treatment is.  Her "drug of choice" (boy that sounds bad) was a combination of Domperidone (the non-alcoholic distant cousin ...) and Kytril--not for everyone, but worked wonders for Samantha.  We had an amazing team of doctors working with us--headed by the two doctors at the headache clinic.  The intern assigned to her, Dr. Chan, was amazing!  She is a first year intern focusing on Pediatrics, but she was so good for Samantha.  She has an amazing fashion sense that caught our attention right away, and when Samantha was having difficulty seeing things through, she was able to talk her through it.

Without going into too much detail, Sam and I agreed that "Goadsby's magical receptors" was the phrase of the week.  I heard Dr. Goadsby himself talking about them with the other doctors using thousand-dollar words that I couldn't possibly hope to repeat, but one of the Neuro-interns dumbed it down for us with that phrase.  Basically they are the neurotransmitters in our brains that act as pain receptors.  Sam's are misfiring and not responding to treatments thus far.  Sooo, the DHE molecules are supposed to connect themselves to these receptors to confuse them into letting other meds through to the brain and therefore break the headache.  Very oversimplified, I'm sure, but that's how I understand it.

So now we wait.  Again.

Adagio: Ritardando (rit.)

After the last couple of weeks I am so ready for a little slowing down.  I loved my hike and have survived San Francisco, but I am so ready to get back into the around-the-house routine and just get stuff done.  I missed my sewing machine and I certainly didn't get much housework done--thank goodness for Grandma while I was gone :)

Samantha and I met with the doctors at the UCSF Headache Center on Tuesday and Wednesday.  They basically confirmed her diagnosis of New Daily Persistent Headache (NDPH) with one caveat--there are two "types" of that diagnosis and she has the migranous variety.  Basically her constant headahes mimic migraines in a couple of ways, but aren't really migraines.  But we already knew all that ...  On Wednesday, she received a shot of lidocane and steroid into her left occipital nerve.  That can take 7 to 10 days to feel any positive effect and works for 2 out of 3 patients.  In the meantime, we're fervently praying for her to start feeling some of that relief.

We did get a little bit of sightseeing in between doctors visits, public transportation and the 9-hour drive each way, so here is a sampling of some of the relaxing we did:

 
Finally, I signed up to do another quilt along a few weeks ago and it started while I was in SF.  I woke up early today to work on week one and here it is.  I'm grateful it came together so quickly since I have so much else to do :)  If you're interested, check it out by clicking on the link on my sidebar or at http://happyquiltingmelissa.blogspot.com/2012/07/tetris-quilt-long-week-1.html.

Have a wonderful weekend!