moosey

Scout, I'm so sorry you're having to fight this battle. Coping is very hard. I'm going to assume you're a teenager because you mentioned how you were "young". Let me tell you something about POTS. A majority of people who acquire POTS during their teen years get better with time. I remember feeling scared and so misunderstood as an undiagnosed teen. Your path is going to be a bit different than the norm, but I'm sure once you see that specialist and begin treatment, things will get better. There's hope. A lot of people with POTS have to go through a similar challenge- having doctors not take them seriously, being told it's anxiety even though it quite obviously is physical. So please, know that you're not alone, that there's hope, and things will get better with time. I was diagnosed with POTS at 16 years old (it took 2 years to get that diagnosis), i was bedbound most of high school, but now that I'm in my early twenties, things are a lot easier. I still get episodes here and there, but compared to how things used to be, life is a lot easier. When you feel down, just remember that this isn't forever.

I've done a bit of a test myself by covering my eyes and one at a time testing their response to a bright light bulb. My right eye's pupil doesn't contract when exposed to light during these episodes; while the other eye does exactly what it should. You mentioned hormone levels- if I had raised cortisol levels, wouldn't both eyes be affected? I'm not quite sure how it all works. Do you know of any cases where an ocular migraine causes temporary blindness in one eye? I'm really trying to figure out if this is a thing common to EDS/POTS or if it's something different.

I have not. What did the neuro opthamologist say about your eyesight? I'm new here, so I don't know how this all works, but if you'd like to DM me, I'd be happy to compare notes.

So I've been diagnosed with POTS/hEDS for six years now, and I've never quite experienced anything like this before. Sometimes, when I stand up and go into a dark area from a light area, my eyesight in my right eye will go out. Sometimes this happens when I wake up in the morning as well, or if I overexert myself. It just seems so random. It's not painful, sometimes it's accompanied by a headache right behind my right eye, but for the most part, it doesn't hurt. My left eye will still be able to see things, but when I just open my right eye, all I see is black. It takes anywhere from 2-10 minutes to resolve. I've been to my GP, but they don't seem to know what's going on. I'm wondering, does anyone else out there with EDS/POTS experience this?

Sounds like you've had some scary experiences! I do believe I know what you're talking about. If you have an iPhone I recommend downloading an app called "instant heart rate: HR Monitor." It's free and it's pretty accurate, all you have to do is put your finger on the camera. I've tested it against my blood pressure machine's HRM and it's usually less than 5 beats off (pretty accurate imo). If you can monitor how your heart rate is reacting during times when you feel this, it'll give you a better idea of what's going on. Plus it's always nice to have actual "proof" that you're experiencing something. If you've been diagnosed with pots, I think it's safe to say it's pots related. Either way though, log as much as you can. Your heart rate, blood pressure (if you can), sensations, triggers, frequency of episodes. log log log!

That's tough! I worked as an assistant manager at a heliport. For over half a year I did fine, then suddenly POTS came back. It was hard to explain to my boss and it was embarrassing for an employee to find me on the floor next to my desk. What I ultimately did was write out an email to everyone explaining how my condition could affect THEIR day. Most of the time, people don't want to read long-drawn out literature on conditions that don't apply to them. My main points: 1. don't call an ambulance if I've passed out. 2. I'm not dying any time soon. 3. Sometimes I put salt in my water. Don't be alarmed, I'm not pregnant or crazy. Since you're a teacher, I imagine your students would be more curious about what's happening. This could be a good opportunity to take 10-15 minutes to explain the most basic parts of what POTS is. It could be good not just for your sake, but for theirs as well. When I was first experiencing symptoms of POTS as a youngster, nobody believed that I was truly suffering. I was bullied not just by kids but by teachers and parents as well. My pediatrician told my parents and my school that it was a behavior issue. Ultimately I was expelled from school because everyone around me believed that I was "faking". Educating young people about invisible illnesses could help them develop empathy for peers who may be going through health issues as well. Just a thought. Also, if your employer is asking you to provide documentation that you're actually suffering from a condition, it might be a good idea to have your doctor write out a note explaining what they think is pertinent for your boss to know. Doctors have to write that sort of stuff pretty often, so they would probably know the best words to use. Good luck! I wish you the best.