Brianna’s Blog | A Journey Through POTS, EDS, and More

The struggles of living with Ehlers-Danlos Syndrome (EDS) are real. Some days are easy, but the other days? They are filled with pain. When a person thinks of EDS, the first thing that comes to mind might be the flexible joints and the cool, double-jointed party tricks you can do. However, EDS is a lot more than that.

For me, EDS has caused a wide variety of issues from the flexible joints to subluxations to hair loss to pain all over my body and more. The worst thing is obviously the pain though. As I sit here now, I’m in an EDS flare, and it feels like my joints are on fire. It hurts to even get out of bed and some days, I don’t.

However, I’m not going to give up fighting for a cure. I’m going to keep advocating. I’m going to keep spreading awareness where and when I can. If you’re struggling like I am with EDS, don’t give up. There are others out there like you and me so you’re not alone.

Just the other day, I was reading in one of my EDS Facebook groups, and it was so encouraging just to see others like me. I read a post about seizures, which as you know, I have them as well. The fact that my seizures could be connected to my EDS and I found out about through a doctor on my EDS Facebook group is amazing! These connections are what make us a community.

After I read that on Facebook, I Googled the connection between seizures and EDS, and I found another user’s WordPress site talking about the book Disjointed, which I happened to have. Disjointed is a book written by Diana Jovin, and it allows the reader to “navigate the diagnosis and management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.” On the WordPress site, the user talked about pages 236-239 specifically, as these pages discuss seizures in relation to EDS. This chapter was written by David Saperstein, M.D. He states that there are other things that mimic seizures including “Neuropsychiatric aspects of mast cell activation disorder” as well as “hyperadrenergic states,” meaning their system goes into “fight, flight, or freeze.” Saperstein goes on to say that “In these situations, treating the sympathetic-oriented dysautonomia or treating mast cell activation disorder, or both, is really the way to treat these episodes, and certainly not with seizure medicine or with psychiatric counseling.” All that to say, it looks like, after 4 years, I may finally have some answers as to why I’m having my seizures, and they could be connected to EDS and MCAS.

Whatever the reason though, EDS is an ugly beast, raring its head at the most inopportune moments. If you suspect you have EDS or MCAS or seizures related to EDS for that matter, please reach out to your doctor and get checked out. There’s no reason to suffer in silence.

All quotes are quoted from Disjointed by Diana Jovin.