Real People With Dysautonomia: Connor, the POTS Guy

Real people with dysautonomia: Connor the POTS guy on TikTok | Normalyte ORS Electrolyte for POTS

Real people with dysautonomia: Connor the POTS guy on TikTok | Normalyte ORS Electrolyte for POTS

Connor was diagnosed with POTS in 2022 after only a year and a half of experiencing symptoms.  As luck would have it, his girlfriend works for a doctor who runs an autonomic testing clinic and she knew POTS well.  Watch the video to see his story and comment below telling us how long it took for your diagnosis.

Transcript of the video:

CANDI: So, how are you doing?

CONNOR: I'm good how about you?

CANDI: I'm good. I love your TikTok page!  I said it to you in the message but I love that you're advocating for POTS. I love that you're a guy doing it because you just don't see it as much and so I love it. Kudos to you is all I'm trying to say!

CONNOR:  Hi, I'm Connor I'm the POTS guy on TikTok.  I'm 29, I'm an occupational therapist in the Boston area.  I'm an occupational therapists by trade but I'm currently Director of Rehab at a Skilled Nursing Facility just outside of Boston.  So that's kind of my job.  Obviously POTS, I think, is 85% women, but I was like there's there's some guys on Tik Tok [with POTS].  I feel like I should step up.

CANDI: You're completely right there are men who have POTS.  It's just not as common as it is for women. Then I think through long COVID I feel like it's just gonna be one of those things that it's just becoming more and more prevalent and it's just going to be exploding. You're gonna see a lot more people across the board just in general having it

CONNOR: I had COVID in December 2020 and it hit me pretty hard. I mean I didn't go to the hospital or anything but I was I was down for the count for like two weeks out of work and for a few months you know I I didn't feel quite right but I wasn't symptomatic or anything. 

Then like mid 2021 at work I had what I now know as presyncope.  I felt like I was going to pass out.  I was like wow that's never happened.  Went to Urgent Care and I have a bad habit of this, I already had hypothesized what it could have been.  I'm vegan so I was like oh maybe I'm deficient in B12 I know vegans can be deficient so the PA there was just like "oh yeah deficiency in B12 I think" so he didn't run any tests or anything.  Around then I also started developing migraines which I had never had.  Pretty much until the end of 2021 I had an occasional presyncope and migraine but I just thought it was maybe like I was starting to have migraines. 

Early 2022 it started getting much worse I started like having to go home from work multiple times a week because I was in I was an occupational therapist at the time standing six or seven hours a day.  By complete luck, so I think this is very unique, and this is part of why I started the page because I think I have a bit of a unique position. My girlfriend is by complete luck an autonomic neurology physician assistant.

CANDI: There you go!

CONNOR: She told me this after the fact but she said like back when I started having pre-syncope she was thinking POTS.  She was like no there's no way that my partner has the the condition that I'm always seeing patients for, but then as it started getting worse she did the the poor man POTS test.  It was like very very clear that based off that I might have pots.  So luckily she has a ton of experience.  She told me the compression the salt, increasing hydration, and kind of typical POTS triggers.  That helped some for a few months and then I got to a cardiologist in June of 2022.

He gave me a heart rate monitor just to I guess rule some things out so that was insignificant there was nothing on there. Another fact about me, I guess, I've always been like a cross-country runner.  I like playing basketball and as this was coming on I would notice that like what felt like you know perceived exertion wise with a very slow easy run my heart rate would be like 180.  Which is like that's like heart rate for like a Sprint at least for someone my age. Same with basketball like there was once or twice I just could not even. Just a casual pickup game like I felt I had to stop basically and once I felt like I was like having a heart attack.  

I know that's now that's palpitations which are also normal.  I got on Propranolol after the heart rate or the heart monitor came back insignificant. Propranolol got me like 25 percent better I would say.  It helped but I still was not quite right.  My girlfriend calls it the POTS cycle.  Standing causes symptoms so you start avoiding standing, and then that deconditions you, and that lowers the threshold for symptoms.  That's unfortunately how people get like bed ridden.

This past October I got my formal autonomic testing with her attending physician who's like one of the top autonomic doctors in the nation, luckily.  It came back positive like for POTS. My testing also said I was hyperventilating which I didn't even realize.  In January I got put on mestinon which is a very good medication and that got me like 90% back to baseline.

That medication plus propranolol is what works for me.  You kind of just have to trial different medications, unfortunately.  I guess I just got lucky that I found the right combination early on.  I'm definitely lucky that pretty much a year and a half after my first symptom I got diagnosed and on the medications that are going to help me because I see all over TikTok that it takes some people like so many years.

CANDI: On average, it's seven years. Is there anything that sticks out in your head that was a win for you?

CONNOR: Yeah definitely.  Once I got back on mestanon, my standing heart rate was no longer spiking as much so I was like all right I should definitely try running again! I remember I went on a 10 minute run, which for me, I mean, before, a 10 minute run was nothing. I went on just like a 10 minute run and I felt good and that was a huge moment for me because I felt like I could get back into running, get back into more athletic things.  So that was a big moment for me mentally to kind of feel like I'm getting back to how I was before POTS 

CANDI: I totally understand and that is a big success being able to do that.  So are you able to to do any longer runs now or are you able to continue to get runs in?

CONNOR: I'm not I'm at the point I'm running like 20 minute runs.

CANDI: That's great!

CONNOR: So that's around. And my girlfriend since I have like someone who is so experienced with pots I I feel very fortunate that I mean she says that that's pretty that's pretty good for someone with POTS. Most of her patients are not at that point so I feel very fortunate that everything came together as far as me knowing relatively early on that it was POTS and getting treatment. I realistically didn't really get deconditioned like so many other people did so I'm happy that in the grand scheme of things how things turned out.

One other video I want to make is like about supine exercises you can do.  So that any any heart rate increase that's occurring is just from the exercise, not because of the positional change. I think not a lot of people think of that possibility

CANDI: I feel like you are the luckiest man on the planet. I really do. Your girlfriend working for the autonomic Clinic  being able to help you find that diagnosis so quickly.  I mean those are huge wins for a lot of people who have POTS and so I think you're ahead.   I feel like it'll be okay for you.  If you just keep on top of it and you keep managing those symptoms.  I know you're on medications now but have you been able to kind of manage it to where you're able to figure out, like at work, hey I know I need to sit down for a second or I need to modify how I'm doing things.  Can you just talk about work a little and how you're able to work?

CONNOR: So I was doing occupational therapy eight hours a day and I was very fortunate that as symptoms came on I was given the opportunity to kind of step into a management role which brought my time treating patients down to closer to like two to four hours a day.   Then the rest of the day I could sit if I needed to and even that two to four hours was not manageable at points.  Over time I just kind of became used to what were triggers at work like trying to make sure my office was cool. Trying to make sure that if if there's no reason for me to be standing even today I try not to like stand. If a patient's in bed I'll just like pull up the chair.  So I try to not push it as far as like pushing my limits not standing hours on end. The second I feel symptoms I I know if I lie down and I kind of resolve it before it escalates that can really just kind of prevent it from happening for me.

CANDI:  Any of the skills that you just have through that have you been able to apply to yourself in helping you through too?

CONNOR: It's a good question. When patients come there they're coming from the hospital and they're not ready to go home their spirits are down and I kind of have to like rally the troops mentally and be like alright we this is going to be a process but we can get you home you just have to like kind of put in the work.  I kind of tried to have that mentally with me. Especially once I got the diagnosis like all right this is going to be a process but at some point I'm sure you know I'll be where I want to be. So I I kind of tried to always have that light at the end of the tunnel which, again, is easy to have when it's only been a year and a half.  Easier than seven years especially for some people.

CANDI: Who, I mean you kind of already said it so I think I know the answer, but who do feel like is your biggest supporter in your journey? Is it your girlfriend do you have family that supports?

CONNOR: Definitely my girlfriend she's been support medically, support personally, of course, throughout this whole process. I definitely question whether I would even be able to still be working if it wasn't for her because I probably wouldn't have been steered in the direction of POTS so quickly.

CANDI: I'm sure!

CONNOR: So I'm I'm really in this good mindset good physical space I'd say because of her 100% because, like I said, I'm just very lucky that I'm just so lucky to have a partner who directly deals with POTS. I'm a pretty good advocate for myself. I would say the worst I ever got was like maybe people not understanding what POTS is and I had to educate them.  Definitely at work definitely some friends who because I'm sure you've heard like alcohol is for sure a trigger for POTS. I really don't drink anymore and some friends really haven't understood why. Even after education. 

CANDI: Have you had any times where you feel like you need to bring up the illness in a relationship? It could be an employer, it could be a co-worker, it could be a friend. How do you go about that?  How do you decide when to tell them, I
guess, or when it's important for them to know?

CONNOR: The first time I really told anyone I was going to their wedding and it was like early on and I was definitely going to be sitting most of the time. I was like hey, here's what's going on with me medically and it's going to result in me unfortunately not dancing much at all. I'm going to probably be sitting and I just wanted you to know that that's because of this medical condition not because I'm not happy to be there or something. So, it's like 'why is he sitting' or 'why does he seem off' or something. I would rather proactively explain what's going on then have to do it in the moment or have them wonder.

It's obviously a case-by-case basis but I would definitely just encourage people to talk about it. Be open about it and yeah definitely try not to feel like there's a stigma with it. I know that's easier said than done. I would hope they would be understanding and if they're not maybe it's time to think about whether that's someone you want to have that closely in your life. I hate to say because they should be understanding about something you can't control and how it presents.

I went to James Madison University down in Virginia.  Right now I'm up in Boston I want to graduate school got my master's degree in occupational therapy at a little school called Baypath up here.  Some of my passions are definitely running, exercising... what else... music. I I like rap music especially.

CANDI: Do you have a quote that you find yourself coming back to over and over? Just something that you heard or read that has stuck in your mind?

CONNOR: Oh I guess I have a good one. So I have a tattoo of a rose here and I got that because there's a quote that I like that says you can complain because roses have thorns or rejoice because thorns have roses.  I think that applies to POTS some, you know? It's obviously easy to be down about the symptoms you're feeling and about maybe the effect it's having on your life but you can look at it in a positive light of, you know, there's hundreds of diseases that could be worse that are progressive and terminal.  There's medication management that you can do, there's lifestyle changes that you can do to manage your POTS. There's always a positive you know light to any bad situation

I definitely encourage people to, you know, look within and really see who they are outside of POTS and how they can build off that. Use that to help themselves mentally because POTS takes a mental toll on everyone for sure.

CANDI: Do you want to talk a little bit about your channel?

CONNOR: I just searched searched up pots on TikTok and not that there's anything wrong with this but most of the top ones were you know people showing themselves passing out. in my opinion, highlighting the downside of POTS which of course is easy to highlight. It's a very hard illness. I felt like I had a unique position as far as being someone with POTS and having someone that close in my life that is a wealth of information on POTS. I want to keep it informative and as positive as possible.

CANDI: Like I said, I love your perspective, I love that you're in the mix, that you're showing that  it is possible for men to have pots.  I mean, I encourage it I love it! You're doing great!

CONNOR: Thank you

CANDI: I know that the community is close-knit and I think that they'll welcome you for lack of a way of saying it.  is there anything else that you want me to know or that you might want others to know about you that we didn't talk about?

CONNOR: I know there's research going on like into post COVID POTS especially.  In addition to meds and lifestyle changes just have people you know hold that hope that you know there's going to be even better treatments in the future for POTS. 

CANDI: It sounds like you're doing everything right too. You know your managing to the exercise, you've got the medications dow,n you know what your sodium intake should be... it sounds like you know what to do and you're doing all the right things. I'm sure your girlfriend's probably like 'you got to do all' this and I'm sure she's kicking your butt if you're not doing the right stuff.

CONNOR; She was at the beginning. She's a massive part of how how I'm at where I am today so I definitely appreciate her input whenever it's given.

I appreciate you showing interest in my perspective. I definitely hope the video and whatever you release helps someone out there.  So yeah, thank you as well.

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