I’m a pretty typical story I guess. About ten years ago I began experiencing head rushes (my own term) when laughing. The pain would spread from the back of my head/neck to the forehead in a stabbing and swift manner. It would go away fairly quickly though, so I attributed it (as did my general practitioner) to my blood pressure bottoming out. This past December my new primary care physician sent me for a lumbar puncture. She felt like the increased symptoms were actually idiopathic intracranial hypertension. After the MRI the Radiologist cancelled my lumbar puncture and informed me that I had cerebellar tonsillar ectopia (5mm).
Since that time things have progressed to daily torture. I wake up and have an episode (my neurologist’s term). I loose balance while walking. I can’t adjust the way I am sitting in the chair without wanting to chop off my own head. And don’t even get me started on how painful coughing is… I’ve tried four medicines so far - Topamax, Nortriptyline, Indomethacin, and (currently) Zonisamide. No relief.
The Neurosurgeon says I am not a candidate for decompression. The Neurologist says we’re just going to keep trying medicines until we find something that works, and we are crossing our fingers that we do. Meanwhile no one around me really understands what it feels like to not be able to grab my favorite shirt out of the dryer without tears of pain streaming down my face.
Same old story right?! Well that’s exactly why I’m here. To learn from you. To find hope in your triumph. To share our comparable struggles. I just don’t want to feel weird anymore.
Thanks for letting me join.