Browsed by
Category: Dysautonomia

POTS in the news…

POTS in the news…

For those of you that follow the latest research on postural orthostatic tachycardia syndrome (POTS) regularly, this is probably old news. But for those of you that don’t… A recent study out of an Australian university has discovered the genetic suppression responsible for POTS. For a while now, researchers have known that something with the norepinephrine (aka noradrenaline) transporter (NET) gene (SLC6A2, found on chromosome 16) goes wrong in POTS patients. Apparently, a repressor protein called MeCP2 and a non-coding RNA…

Read More Read More

happy POTSiversary to me…

happy POTSiversary to me…

I’m going to tell you a story about the woman in this photo.     This was taken a little over six years ago. She woke up after a restless sleep, like every other night that year. After donning some yoga pants and a sweatshirt, throwing her hair in a messy ponytail, and staring at her makeup-less face in the mirror for a few minutes, she gazed silently out the window while her boyfriend drove her to the hospital. Her thoughts…

Read More Read More

conference recap…

conference recap…

I was really hoping to get this out to you all before the end of 2016, but I’m 23 hours late. I hope you’ll all forgive me. [P.S. HAPPY NEW YEAR!] As you may remember, I attended the Connecting the Dots conference about POTS/MCAD/EDS in December and want to tell you a little about that experience. I believe the videos of the individual speakers at the conference will be made available early this year. I will post here once I…

Read More Read More

(wo)man’s best friend…

(wo)man’s best friend…

One year ago today, my life changed. This handsome fella came into my life: Today is Fletcher’s one year adoption anniversary. I first came across his adorable face when searching a local dog shelter’s website. When I saw his photograph, I immediately fell in love with Fletcher’s golden eyes. We made an appointment to see Fletcher, but were warned by the shelter that he was extremely shy. Shy didn’t even begin to describe him. He was petrified. Fletcher wouldn’t make…

Read More Read More

when bad doctors happen to good people…

when bad doctors happen to good people…

I feel like most people with complicated chronic illnesses deserve honorary medical degrees. Every week I spend countless hours reading medical journals and researching different illnesses. The number of doctors I have had to educate on my condition is astounding. I actually left my old PCP because he had never heard of postural orthostatic tachycardia syndrome (POTS), and didn’t seem to have any interest in learning about it. I see a cardiologist for my POTS, but its important that the…

Read More Read More

dysautoFAQs…

dysautoFAQs…

I often receive email from people who read my blog. Some ask questions, some share their story, some just like to vent – all are welcome. I have even made a few email/texting friends that way, which has been a huge unexpected bonus to writing this blog. You are welcome to email me anytime at Lindsay@Dysautonomiac.com. I try to answer every email, so if you don’t hear back from me, resend it. I’m not an expert on dysautonomia/postural orthostatic tachycardia…

Read More Read More

just an update…

just an update…

I feel I owe you all a follow up after my last few posts. After having a difficult time for a few weeks, I finally started to feel a little better this week (assuming 2.5 day migraines don’t count). My mom returns tomorrow for her clinical drug test and will be here all next week, so the timing is perfect. I seem to have established a regular pattern where I push through my mom’s visit, feel awful for a while…

Read More Read More

uncontrolled…

uncontrolled…

Anyone who has met me wouldn’t be surprised to hear that I think I’m a bit of a control freak. It probably then doesn’t come as a surprise to hear that I like having control over my body. Having postural orthostatic tachycardia syndrome (POTS) tends to throw the occasional wrench is my well-oiled wheel of bodily control. Unfortunately, as I recently discovered, so does stopping certain prescriptions. About ten months ago, I stopped taking birth control pills. For a control freak, this…

Read More Read More

POTS webinar…

POTS webinar…

Howdy! I just wanted to let you all know about an upcoming webinar featuring Dr. Grubb (who is like a rockstar in the POTS world) tomorrow evening. I believe the webinar is primarily about POTS with Ehlers-Danlos Syndrome (EDS), however, you may still find it interesting if you don’t have EDS. I don’t have EDS and still plan to listen in.  The details of the webinar are below: DATE: Tuesday, February 16, 2016 at 7:30-9:30pm, EDT TOPIC: Postural Orthostatic Tachycardia Syndrome…

Read More Read More

resolutions…

resolutions…

Happy New Year! I’m pretty excited about this year. 2015 was the most stressful year of my life – partly for reasons I have already shared with you like trying awful new medications, getting married, and the honeymoon – and for many reasons which I haven’t yet shared with you. I’m still searching for answers on a few things, and probably acceptance on a few others, and will explain it all to you in good time. In the meantime, I…

Read More Read More