Colorado ES Roll Call!

Calling all Colorado locals (and all adjacent Colorado/Hepworth Patients)! This experience is hell. And the road to recovery is loooooong. Let’s lean on each other through this process, and maybe even meet up. Share any bits of your experience you feel comfortable with sharing.

My name Emily, I am 24 years old and have been suffering (unknowingly) with ES for four years now. I am crazy flexible (not Ehlers Danlos or anything, but was born with mitochondrial dysfunction which is in the same family of flexibility). Four years ago I was studying abroad in Spain, living alone, and ultimately went on a weekend excursion to Morocco, where I came back ill with digestive issues which never left. I had a colonoscopy/endoscopy two weeks after my 21st birthday, which found nothing. It also sent me down a long path of being dismissed, misdiagnosed, and medically neglected. I was later diagnosed with chronic severe migraines, and after almost two years of intense migraine treatment, that doctor decided to blame my not getting better on my anxiety, while refusing to call in a brain MRI…ever. It wasn’t until much later that my new neurologist found ES on my brain MRI. If anyone here needs a neurologist in Denver, go to Dr. Michael Ament of the Ament Headache Center and Cherry Creek Neurology. He actually texted my results to Hepworth before even seeing me for the results, who was apparently “excited” about my case… I have my first appointment with his office at the end of January. It is so refreshing to have on-the-ball doctors who BELIEVE me and CARE about my recovery.

More positive stuff about me — I am a wedding planner, and I absolutely love what I do. I started my own company during this madness, and I am beyond excited to get back to doing it at full force. The post COVID wedding + events industry is the busiest we have ever seen, so there are lots of amazing couples who need our help. Plus, Colorado makes for a pretty remarkable backdrop for wedding photos.

I am a skier, hiker, and anything outside-er, which I miss and am anxious to get back to. Oftentimes going to higher altitude, as well as the exertion involved in these activities trigger my symptoms even more. Even wedding planning, which is a surprisingly physical job, increases the intensity of my symptoms tenfold. Anyone else have similar experiences?

Sending a big-a$$ virtual hug to all those who need one. We’re in this together :heart:

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Sorry so long in replying. We too are in CO. My daughter (now 20) is the patient. She has been suffering with IIH an ES +++ for 8 years with a non-stop daily headache. She has seen Dr. H. for 2 years with CSF and Jugular Impingement surgeries, as well as was sent to NC for brain angiogram. Still no relief. We are still waiting for answers.

That’s really tough. I hope you get proper diagnostic help soon for your daughter. Maybe others know US medics who might be able to help. D