September is Hydrocephalus Awareness Month

Today I’m joining @HydroAssoc in raising awareness about #hydrocephalus. Let’s find a cure! #HAM2019 #NOMOREBS.

Advertisements

Finally….

Third time’s a charm, right? I had one neurologist for years whose mantra appeared to be ‘every headache is a migraine.’ Different hospital, new neurologist. During my ninety+ day headache gave me the same type of medication and said “come see me if it doesn’t improve we’ll put you back on a medication you’ve previously been on.” NOOOO!!!

Some headaches are shunt-related and have more to do with fluid dynamics than blood vessel dilation. Finally, maybe, a neurologist who gets it.

A treatment, not a cure

The Chicago walk to raise money to find a cure for hydrocephalus is August 18. My husband and I will be walking with my fellow hydro warriors.
If every child diagnosed with autism endured a mandated brain surgery meant to treat their condition, would the world sit up and take notice?
The most common pediatric neurosurgery is the placement of a shunt to treat, not cure, hydrocephalus. We will endure brain surgeries to stay alive because it’s the only choice we have.

Headache & Migraine

My headaches have been well under control since surgery in March. Yesterday I had a headache and thought ‘Where did this come from?’ Today awoke with a migraine and thought ‘What did I eat?’

A day or two ago I remembered eating an entire box of macaroni & cheese. Apparently even organic mac & cheese is on the ‘do not eat’ list.🧀

Cheese, chocolate, citrus fruits, caffeine and artificial sweeteners still banned from my eating list.