This is what it looks like to have hydrocephalus or chronic migraine.
Just because we are “good” one day does not mean we are “good” the next… and just because we had surgery we are not “fixed”. Shunting is a management system for us. It helps and for a lot of people it works wonders for years but other times they fail, and clog and get infected some times all of the above and some times finding the proper balance of fluid flow is next to impossible leaving some with chronic pain and other problems.
Some people with hydrocephalus need very few shunt revisions (surgeries) in their lifetime, whilst others require more frequent revisions, or adjustment of settings on the programmable types of shunt.
Hubby and I are convinced that my repeated revisions (completely justified and necessary at the time) were partly responsible for my severe form of migraine today. Scarring left from the surgeries, plus congenital brain damage, plus a lower set point (threshhold) for migraine triggers to begin with.
Example: Practically anyone, given the right set of triggers or conditions, can be made to have tonic-clonic (grand mal) seizures: the most recognizable form of epilepsy. But not everyone has epilepsy because their brains can tolerate the stimuli that gets tossed at it without the neurons going haywire. In an epileptic person, the brain gets triggered much more easily and frequently (and sometimes we don’t know what the trigger is; it can take a long time to weed anything out).
Similarly, migraine affects millions of people worldwide, but like epilepsy, it has varying degrees of both its severity and what it will take to set a migraine off. For most people, their triggers can either be identified and avoided, and/or medicated easily. For others, like me, medicating successfully has taken a much longer time.
In my case, there are almost no triggers we can clearly identify. The ones we have are Camembert cheese (so I haven’t eaten it since 2000), and barometric weather changes (good luck avoiding that trigger!). Medicating by trial and error since this all began in 2003, has been a roller coaster and an exercise in developing patience. (In the event you run out of patience, apply cats, dogs, chocolate, and a loved one’s cuddles.)
So, in a rather roundabout way, this is my story in connection with Hydrocephalus Awareness.
Thanks for reading!
