As a lot of you followers know, I have a condition called pseudo-tumor cerebri, or IIH. Treating this condition is pretty simple, but expensive, as I’ve commented on before. And since my mom’s death last year, I haven’t been able to do anything to manage the disorder, leaving me in an increasingly bad way.
It would mean a lot to me if you can donate, or just spread this link to help the words spread that I need help. The sooner I get this tap, the sooner I can get to feeling a little more human again.
Here are some things I thought I should share about my condition:
I have IIH (idiopathic inter-cranial hypertension), specifically pseudo-tumor cerebri. Basically, from what I’ve gotten out of my doctors and research I’ve done on my own, that means my body doesn’t process the cerebral spinal fluid that cushions my brain from my skull.
That means that pressure builds inside of my head, causing pain, and in many cases, symptoms very similar to having a tumor in the brain (hence ‘pseudo-tumor’).
For me this causes chronic migraines, dizziness, poor motor control, and several speech/language issues including:
- nounal aphasia (misusing or losing nouns in a phrase)
- dyslexia (scrambling of letters or, at times, whole words in a phrase)
- lethogica (forgetting or losing words, names, places, and entire phrases while trying to articulate thoughts)
There are a lot of medications that have side-effects used to help this condition, but I haven’t seen anything about a medication specifically tailored to help people living with IIH or pseudo-tumor. The treatment advised for me is regular spinal taps, to physically remove excess fluid from my body.
This process is a quick enough procedure, though I admit is is pretty painful. But it’s candy next to the constant migraine and back pain.
It’s also a good note that the longer I go without getting a tap, the more at risk I get for vision loss. The drop in my acuity and FOV hasn’t gotten terribly bad yet, but eventually, I can go blind, permanently. I don’t really relish that thought.