The story of Joey
New Daily Persistent Headache has been the defining factor of my life since the day it started on July 24, 2016. It’s very similar to the feeling of a migraine except it doesn’t end. With 74,000 hours straight of debilitating pain I can say it has changed every aspect of the way I live. This condition is extremely rare because it only affects 1 in 30,000 to 100,000 people. I could walk into a football stadium filled with people and be the only person in that room with NDPH. New Daily persistent headache is considered to be an incurable neurological condition with no known cure or real treatment. I also have Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. Because of my EDS I developed cranial cervical instability and my measurements were so bad that I had to have a cranial spinal fusion performed in order to prevent me from having paralysis from the neck down. Those diagnoses are uncommon but the fact that several things have culminated together for the “perfect storm” makes my case even rarer. In 2023 I started waking up everyday with a heart rate of 170 bpm, extreme stomach pain, nausea and being on the verge of passing out. I couldn’t keep any solid food down, and I lost 40 pounds in three months. This was caused by getting sick back to back so many times in 2022 and 2023 that I subsequently developed Postural Orthostatic Tachycardia Syndrome known as POTS. I couldn’t leave my house for over 6 months, the only exception being when I had to force myself to go to doctors appointments. This led to further testing which revealed that I have the caspr2 antibody which causes “anti-caspr2 antibody-associated encephalitis.” Despite all of this I am hopeful for the future of medicine to see what will be brought forth next, because something is only deemed impossible until it is done. I believe there will be light at the end of this tunnel for those of us with rare diseases.