I read the article regarding the gal with Postural Orthostatic Tachycardia Syndrome in the Oct. 3 edition of the Woodinville Weekley and I am absolutely thrilled to see a local news source provide awareness about it!
I myself became sick four years ago this month and was diagnosed two years ago after suffering through countless tests and false diagnoses.
I am now currently a student at the University of Washington Bothell in the Health Studies major. I also run a small Instagram blog where I document my life with POTS and help other people reach their diagnosis as well.
The gal the story features and my story is quite similar, though there are some key differences.
I woke up Oct. 25, 2015, with stomach flu and was never the same. Within a month I had lost 15 pounds, and could no longer eat due to excruciating pain.
An endoscopy revealed that my entire stomach was covered in red burned patches, totaling to about 30 overall. This is an important factor because many people who end up with POTS have it resulting from an illness that attacked the nervous system to the point where the damage would become permanent.
I then was diagnosed with Hashimoto’s Thyroiditis 3 months later and spent the remaining year focusing on getting that into remission, while my undiagnosed POTS was remaining mild.
This is extremely important because more often than not, POTS becomes present in people who also have an autoimmune disease.
A year later, I got a concussion playing soccer and that’s when my POTS reared its ugly head. I began vomiting daily, and my stomach function no longer worked. I went from an extremely athletic, 115-pound girl to a frail bedridden 90-pound girl.
I ended up being hospitalized, where they, unfortunately, treat any girl with weight loss and limited eating ability as someone with an eating disorder. It took 2 days of fighting for treatment in the hospitalization for the doctors to take me off eating disorder protocol and do other diagnostic tests.
What they revealed is that my stomach is no longer functioning, and after following a strict protocol for an endoscopy, I still had food sitting in my stomach almost 24 hours later. The majority of people with POTS have an impaired stomach function to some degree, which is similar to gastroparesis. This is because the nerves in the autonomic system that are in control of digestion are no longer functioning.
After seeing over 20 doctors and having almost every test possible done, I finally got diagnosed over 2 years later.
Though I have not gotten substantially better, I graduated high school, which we weren’t sure was going to be possible. I am now attending UW Bothell with an exceptional GPA and am tackling other big accomplishments every day I didn’t think I’d be able to!
Thank you again for covering this much-needed topic. It means the world to me and to the rest of the Dysautonomia community that our stories are being heard.
The more people this information reaches, the more people we can help and the less stigmatized this condition becomes!