u/Water_Tiger_1111

So for me this feels like the floor is trying to pull me in. I get dizzy, my vision gets...weird, and then it's a sort of intense irresistible sleepy feeling like "ohhh just relax and have a nice sleep" and I feel weak, like if someone tapped me on the shoulder I'd just fall right over. My balance gets bad and I'll really stagger around if I'm walking.

I can fight it to an extent. But I'm extremely muscular and I think I'm just using muscles to do it because if I give in at all to that "just relax" feeling I hit the floor like a ton of bricks. I have to be tense. Occasionally I forget to not relax for a sec and bam, I drop where I am.

Then it's often like a sort of weird sleep state, usually can hear but just toooooo tired to even lift a finger or open my eyes, body won't budge no matter how hard I try, and then everything comes back online and for the most part back to normal. I'm not sure how often I am completely out or if I'd even know if I was.

Wondering if others experience this same weird pull to the floor before passing out/falling, like a sudden need to nap RIGHT NOW while standing up lol.

It's literally like my body is fighting me to lay itself down on the spot. I just have to TENSE and usually I can stay conscious though not always super coherent, and I try to get somewhere cool immediately.

So I've had symptoms for years, only recently they got so bad I finally went to a Dr, initially because I figured I had just developed an arthmia or something. I was only worried about the chest pains with exertion and actual blackouts/gray outs.

You know, all the weird symptoms everyone here talks about. Nausea, BP and Hr issues, vision loss on standing, presyncope, temp disregulation, other autonomic weirdness etc.

Anyone else just thought this was normal for the longest time???

I thought this stuff was just normal for so many years. I could cope/compensate in creative ways so I just thought everyone felt exhausted, staggered around in the morning, felt like throwing up all the time etc etc.

I just thought that as much as I was doing to manage it was my fault for not being able to manage it better. I beat myself up for the last 6 years over these things. I really thought everyone had to deal with all this daily and I was just being weak minded when I felt like I physically couldn't push any farther or got so bad I was not functioning. I blamed myself for not trying hard enough and not being ridgid enough with my management methods. I would get SO embarrassed when I'd have severe symptoms in front of somone. Like "oh no everyone knows I don't know how to do life now, they don't let this stuff affect them like this, everyone sees my failure as a human!".

I'm just so shocked that people walk around and DON'T have these symptoms as part of their daily life!! Like at all! How is that even possible? 🤯 It's unbelievable to me. It has been my "normal" for so long I didn't even realize these things were related to my initial complaint. I never even thought to mention most of my symptoms because I really didn't think they were symptoms I just thought I was a shity athlete and shitty at life management and that's why they were getting worse.

I couldn't believe it when the Dr told me my stress test was abnormal because my heart rate didn't return to my resting rate and stayed in the 120s indefinitely. I just said "Nobody's heart rate does that!" and he said "actually everyone's heart rate does that, even obease patients return to their baseline during the test and athletes should be much faster". Immediately I blamed myself that I must have screwed up my training or nutrition or something somehow and it's had to be explained to me multiple times that I could not have caused this by mismanagement of my training and I shouldn't need this stringent management routine and strategies to function.

I'm honestly still having a hard time wrapping my head around it. I gaslight myself all the time still. Any time I have a good day I think "see this really is all just in your head, now let's get out there and get after it!" and I do, but I also hit a wall again shortly thereafter and then everyone is thinking I am lazy but I'm actually at home trying to not to have a cardiac arrest or blackout getting to the toilet 🫠

Just out of curiosity I am wondering if anyone else experiences this and how common it is.

If I am suppine I'll have BP 70s/40s, pulse low 50s, sitting up will raise it usually to 90s/60s and keep the same heart rate, and if I stand it raises to normal 110s/80s however here my heart rate usually rises above 100 and I start having symptoms.

I am also in great physical shape. My husband also is an athlete but, his numbers are all pretty similar in all positions in normal range.

I am most curious about the supine BP. I always assumed it was normal to be much lower laying down but it's interesting my husband's doesn't do this.

Well I finally got one scheduled after several months. But my understanding is they don't always discover anything. So I'm sort of skeptical if this will have any benefit for me or what a positive result even does in practicality as far as treating the problem?

I'm a bit concerned about two things. It doesn't sound like something that at all replicates my real world experience or the environments it happens in. If nothing has happened to me in the first couple minutes of being upright, nothing is going to happen at that time unless there's another factor like overheating. So I am not looking forward to being strapped hanging from a table unable to move for and additional 40 minutes to confirm that nothing happens.

And the mystery medication(s) given during the test which no one has told me what they are. Given I have had severe reactions to so many drugs and seem to have some genetic predisposition to hypersensitivities I'm not super keen on just getting an IV bolus of "whatever the hell". Equally I don't want to show up just to have to cancel because it's something that I have an allergy to or is contraindicated.

It seems like there's a fairly large variety of meds that may possibly be used?

Can anyone else shed a bit of light on this process? Or is this test really as much of a crap shoot as other threads on the subject make it seem?

Has anyone who's affected by heat or low blood volume tried building their tolerance to heat and had any success?

This does seem to work well for normal individuals. And it causes an increase in blood volume which could be beneficial for somone like myself who has low blood volume chronicly and also very heat intolerant, if I were able to build BV and tolerance.

One could guess recumbent position hot tubing or sauna might work better to stimulate expanded blood volume than excersizes in heat for obvious reasons. But not sure if this has been tried or what results were?

Curious what anyone else's experiences are if they've tried it.

Does anyone have any recommendations for this?

I HAVE to fly frequently. The usual issues arround travel are major precursors to me having severe symptoms and syncope. I've had syncope 3 times now and I'm worried about being put on a no fly list for it. I was already threatened by one airline it happened on. It's also extremely embarrassing to happen in public.

Is there some way to alert the airline of the problem ahead of time? Because I don't outwardly look like I have a medical issue until I've basically already passed out (and then they don't allow you to fly).

Do I need a Dr's note that explains my condition is not dangerous or preventative of flying?

Should I get a Dr's note to get pre boarding to avoid standing in the hot hallway (where I usually pass out)?

Anything else I can do?

Practical solutions you found helpful for lessening/preventing symptoms in the first place?

So I think I'm in a very unusual camp here, given I am highly functional compared to folks who are house or even bed bound by these conditions.

But, I am still currently a professional athlete and I am at a loss of what to do to prevent this condition from getting worse and how to regain my losses and improve my cardiovascular system.

I'm sure this is a long shot but does anyone else have any resources for such high functioning individuals as myself?

My absolute biggest struggle is with cardio. My heart rate goes sky high and then won't return below 100 usually for hours and it seems like my ANS gets stuck in some overdrive where each consecutive day results in higher and higher resting heart rates as well. Even going for a walk or something very mild on a recovery day will totally f up my rhr and hrv. It's really stagnated my ability to regain my cardiovascular performance. I took time off thinking that would resolve things but it only made it worse and now I'm trying to dig out of a deeper hole.

Cardiologist highly suspects autonomic disfunction. Said my stress test meet criteria for IST but said that itself doesn't account for the plethora of other disautonomia related issues I have. None of the techniques to lower my hr work and we discovered I have faulty baroreceptors and no dive reflex. I usually come up positive on a poor man's TTT. But due to facility issues haven't been able to get a actual TTT or any other testing but the stress test yet. It almost doesn't even matter to me to find out, I just want the problem gone.

Unfortunately I think he is right and I do have this. I believe my extreme level of fitness, meticulous structuring of my daily life to avoid symptom agrivations masks the severity of my condition and has for a long time. It's not until I have heat exposure, lack of sleep, stress or some combo that I start to fall apart to where I physically can't function at all. I've caused all kinds of scenes in public when I haven't been able to manage my symptoms properly and I now live in a bit of fear of this happening especially while traveling. I've passed out in airports and then being denied flying, passed out at events, or just become so ill I couldn't hide it. I also am in SO much discomfort setting up right on a flight unable to lay down or standing for more than a few minutes, I'll set down cross legged on the floor because I just feel so unwell and my legs hurt so bad. I find all this EXTREMELY embarrassing, especially passing out at an airport and having ems called on me and all that shit.... I can't imagine what other people must think of me, especially because I look phenomenal physically.

Sorry that's a bit of a rant. I feel like I should not complain because I am still so functional compared to many many folks, but at the same time I've come to the realization I couldn't even hold a normal job with my symptoms because of all the management strategies I've built into my daily life. And now I'm very scared of losing my athletic ability and career, which ultimately I think is what has been preventing me from becoming house or bed bound in the first place.

But I don't know how to manage this condition as an athlete. I've already been doing extra salt and Electrolyte, I'm a very poor candidate for meds according to cardiology because I have very very low BP at home and a very volitle HR. Sleeping I can dip into low 30s and high 20s and during excersize or heat stress I have hit 230s. I tried compression socks but my legs just turned mottled and puffy above the socks.

If anyone has anything to recommend please let me know. I know there are supposedly athletes with the condition even at the Olympic level but I've no idea how they figured out how to manage the training, given atleast in my case the normal protocols do NOT work for me anymore. =/