I Can’t Follow Beautiful

[00:00:00 ] Introduction and Hosts

[00:00:00 ] Brett: Hey, you listening to Overtired, I am Brett Terpstra. I am here with Jeff Severns Guntzel. Christina is on her usual, uh, tour of the world right now. I think she’s in Chicago this week?

[00:00:18 ] Jeff: Yeah, or Rome, or Latvia, or Upper Sandusky. Who’s to say?

[00:00:22 ] Brett: yeah, who knows. Um, That girl gets around.

[00:00:25 ] Brett’s Health Struggles

[00:00:25 ] Brett: So, um, I missed last week. I apologize. I will talk about why in the mental health corner. Um, but Jeff, how are you?

[00:00:37 ] Jeff: doing good. I like how you apologized. The guy’s been on death’s door. Not exactly. But like, sorry everybody, I was passing out and having really one of the worst times health wise of my life. I’m really sorry to all of you that

[00:00:49 ] Brett: Sorry for the inconvenience, everybody.

[00:00:52 ] Jeff: Christina and I, and it was really Christina at the top of the last episode, suggested people call you, uh, like, um, Message you with [00:01:00 ] unsolicited medical advice.

[00:01:00 ] Did you get any of that? I know you

[00:01:02 ] Brett: So much. Some of it, some of it ended up being really helpful and actually led to discovering what’s going on.

[00:01:10 ] Jeff: And that’s the problem with unsolicited medical advice that no one

[00:01:13 ] Brett: Sometimes.

[00:01:14 ] Jeff: is that there’s usually something hits.

[00:01:19 ] Brett: Um, I, I, yeah, yeah, let’s talk about it.

[00:01:24 ] Discovering Ehlers Danlos Syndrome

[00:01:24 ] Brett: So, um, I have realized, so I had these symptoms, um, new symptoms where I was dizzy all the time, still am, uh, like constant lightheadedness, and then I started just Passing out.

[00:01:40 ] Um, and it was always shortly after an orthostatic change, meaning sitting up or from like lying down or seated.

[00:01:49 ] Jeff: pause, orthostatic change. That’s new for me. Listeners. Is that new for you?

[00:01:55 ] Brett: Yeah. Uh, friend of the show, Harold Kockelmeyer, I [00:02:00 ] think that’s how you say his last name, um, said he was very disappointed when he learned that orthostatic meant, uh, position changes and not a skeleton that couldn’t move. Um, because he’s very, yeah, he’s, he’s very much a linguist and, and immediately wanted to dissect the term.

[00:02:19 ] Um, we, we love you, I love you. I don’t know about everybody

[00:02:23 ] Jeff: I would probably like you, you’ve got a great name. Both of them. And together especially.

[00:02:28 ] Brett: we might have some mixed feelings. I don’t know. I love him. I love him. He’s a great guy. Um, so anyways, uh, like I, I suddenly started fading. I’ve been to the emergency room three times in the last couple of weeks. Um, one time minor concussion, two times, just like, Hey, what the fuck’s going on? Um, and no results.

[00:02:50 ] All my tests came back negative. Uh, my heart came back negative. My blood pressure came back. Positive, like, uh, like, fine, [00:03:00 ] everything, all my blood tests were within range, no explanations offered.

[00:03:05 ] Navigating the Medical System

[00:03:05 ] Brett: Um, I had an echocardiogram because my doctor was convinced it must be my heart, although my doctor was convinced it must be my psychiatric meds, and he kept telling me, I can’t help you, go talk to your psychiatrist.

[00:03:18 ] Jeff: your carpenter was convinced it must be wood rot.

[00:03:22 ] Brett: Well, and my psychiatrist was like, this is none of the meds you’re taking on, you’re taking, explain what is happening to you. So I kept going back and forth and eventually, um, I learned from all of this unsolicited advice about Ehlers Danlos syndrome. And, um, it actually came to kind of a, uh, a breaking point when I was talking to a therapist and they were like, Can you touch your thumb to your wrist? [00:04:00 ] Can you do this? We’re doing this on video. Um, um, and I was like, sure, no problem. And, and they were like, yeah, normal people can’t do that. That’s called hypermobility. Um, it’s a sign of a connective tissue disorder, such as Ehlers Danlos. Um, which is often comorbid with something called POTS, which I can’t remember what it stands for, but it’s what makes you pass out when you stand up.

[00:04:25 ] Um, and, um, All of these things individually, the symptoms are somewhat manageable, like POTS, like the solution is to drink way more water than your average human, increase your sodium intake, and wear compression socks. And with all that, sure, you’ll pass out once in a while, but maybe less. Um, the lightheadedness, I think, can be managed with medication.

[00:04:53 ] But all of this Like, all the symptoms fit, and the interesting thing about it is, I’ve had some symptoms [00:05:00 ] for 20 years, such as GI issues and sleep disorders, um, and all of these can also fit into the EDS slash, um, uh, dysautonomic disorders in general. Um, so I finally have one thing that connects like everything that’s always been wrong with me.

[00:05:23 ] Um, and, and a reason for everything. However, I can’t get a diagnosis until I get genetic testing. And my primary care physician is like, eh, let’s do an MRI first and see after like putting me through all the heart stuff. Now he’s like, let’s make sure it’s not neurological. And I’m like, just give me a referral to Mayo for genetic testing.

[00:05:47 ] Cause I’m pretty sure I’ve got this licked at this point, like solved. And he is just ignoring everything I’m saying. So I’m switching primary care to. Gunderson [00:06:00 ] in the hopes that they’ll get me into Mayo

[00:06:02 ] Jeff: Everybody in Minnesota just went, Gunderson, of course.

[00:06:09 ] Brett:</stro