Trigeminal_Neuralgia

By Nisa Katz

(Nisa will be in attendance at this year’s Patient Advocacy Summit. Come join us!

When I was 22 years old, I finally got my dream job as a photographer at Walt Disney World. But unfortunately a few months in I got extremely sick. No one knew what was wrong and kept telling me I had “just” migraines. I had to move back home with my parents I was so sick. At one point I fell and cracked my head open and had to get stitches. I couldn’t walk the four steps from the couch to the kitchen without almost passing out or having a high heart rate. Clearly this was more serious than anyone thought. It took months to find the right doctor and a proper diagnosis: Postural Orthostatic Tachycardia Syndrome. Little did I know that often times you end up with more than one chronic illness and that was just the beginning.

About two months into my POTS diagnosis I noticed that there wasn’t much awareness out there for my illness (or even many other illnesses either) so I decided to change that! As an artist I wanted a way to make a difference while creating art. So I started an awareness apparel company called Spoonspirations where chronic illness means chronic hope. My mission is simple: to raise awareness by wearing the art and to find cures by donating the profits. So far I have over 1,000 designs covering over 100 illnesses! My goal is to one day have a design for every illness, which is no small task and is taking longer than I expected! But it will happen!

On top of POTS I have also been diagnosed with Trigeminal Neuralgia which for me is the most painful thing I have ever experienced. I thought I was just having really bad migraines in my face but it turned out to be way more serious- nerve pain in my face that has barely any medicine to help. During my journey to find a good neurologist who wouldn’t tell me that I was too young to have such a thing, I found a neurologist who also discovered I have Chiari 0. A lot of doctors recommend brain surgery for these two illnesses which I was not a fan of, so luckily my doctor had some alternatives in mind first. I have been going to an atlas orthogonal chiropractor (a special kind that does not use manual manipulation) and it has taken some time but I am almost symptom free and have been able to come off some meds and it has even helped some of my other illnesses. So please don’t ever give up hope, you might find it in the most unlikely of places.

 

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