Living with Dysautonomia

I’m 20 years old. Ever since I hit puberty, I’ve been dealing with this cluster of symptoms that doctors just can't seem to wrap their heads around, even though every single test comes back saying I'm perfectly healthy. It’s a constant cycle of chronic fatigue, heart palpitations—though my cardiac workups show nothing is wrong besides some mild mitral valve prolapse that doesn't actually affect my blood flow—dizziness, panic attacks, a sensitive gut, and all those other anxiety and depression symptoms. I recently stumbled upon the concept of Dysautonomia. Is anyone else here out there dealing with this same mess?

http://heartdisease.about.com/cs/wom...sautonomia.htm

Hey everyone, I was wondering if anyone here has dealt with this diagnosis before? I'd love to hear what kind of treatment plans you've been following.
So, I recently got diagnosed with Dysautonomia, and on top of that, I'm dealing with Chronic Fatigue Syndrome.
Right now, my doctors have me on Rivotril and Deanexit... so I guess I'm just sitting here waiting for a "miracle" to happen! :-)

Dana Brown56 said:Hi everyone, I was wondering if anyone here has experience with this diagnosis and what kind of treatment they were prescribed?
I’ve been diagnosed with Dysautonomia along with Chronic Fatigue Syndrome.
Currently on Clonazepam and Deanxit... just waiting for a miracle at this point. :-)

What symptoms were you dealing with, and which tests did you end up taking?

Jose Clark2 said:So, what kind of symptoms were you dealing with, and what kind of tests did they run on you?

Well, Jose Clark2, for me it was a whole mess—hand and body tremors, having to run to the bathroom constantly, sweating through everything, and just this incredibly draining, soul-crushing fatigue. I’ve had bouts of insomnia here and there, plus those dizzy spells that always bring nausea along for the ride... honestly, the whole thing just feels like I'm coming down with a nasty flu, you know? Just constant muscle aches everywhere. As far as testing goes, I've pretty much been through the wringer with specialists—saw a neurologist, a psychiatrist, even a psychologist—and for the most part, everything came back fine. But finally, my neurologist gave me a diagnosis, so now we're just waiting to see if the medication actually helps things turn around.

Hey everyone. So, my neurologist finally gave me the official diagnosis of Dysautonomia, and I'm curious—for those of you who have been here since the early posts, how are things actually looking for you after a few years? Have you seen any real progress from treatment, or are you just finding ways to live with the symptoms?

I know someone who went through something very similar to this. They ended up seeing both a neurologist and a psychiatrist—which felt like the right move—and were eventually put on a regimen involving a mild antidepressant paired with what I believe was an anti-epileptic medication. Honestly, since starting that specific treatment, they seem like a completely different person.

Hello, everyone. Since I was recently diagnosed with Dysautonomia (POTS), I’ve decided to start a little information blog dedicated to the diagnosis. My goal, I suppose, is just to help raise some awareness. You can find the link below.

https://disautonomija.wordpress.com/

mistybison45 said:Hey everyone! Since I was recently diagnosed with Dysautonomia (POTS), I started this little info blog about the diagnosis to help raise some awareness. Link is below.

https://disautonomija.wordpress.com/

7. It's like having the flu constantly. Your body just isn't working right, yet you still try to do all the stuff you used to do, but you just can't.

That's probably the most accurate way to describe this thing.
There are plenty of other really unpleasant symptoms too, but this one is the big one for me, I guess.

Hi there.

I won't take up too much of your time, but I was wondering if there are any specialists in the States who actually focus on diagnosing POTS, or more broadly, Dysautonomia.
According to my cardiologists, my heart is perfectly fine, yet the tachycardia is absolutely ruining my quality of life, even with medication.
My test results always come back looking pristine, so they just bounce me back and forth between psychiatrists and cardiologists. It’s a constant game of medical ping-pong, and frankly, I'm not getting any better.

Who should I actually be reaching out to?

Thanks.

Did you get bloodwork done for things like CK, TSH, T3, T4, ALT, AST, GGT, testosterone, estrogen, prolactin, FSH, LH, or cortisol?
Have you ever had mono? Mononucleosis can be a massive trigger for all kinds of nasty issues down the road.

Don't go hunting for a specific diagnosis too aggressively; specialists tend to act like sledgehammers—they see a nail everywhere they look.
Neurologists will tell you it’s Dysautonomia, endocrinologists will swear it's a thyroid issue, and cardiologists will insist it's your heart.
Very few doctors in America actually have the ability to look at someone's condition from a complete, systemic perspective.

An A+ doctor once slapped a Dysautonomia diagnosis on me pretty easily, but based on how I responded to his treatment, he was probably wrong. Now, I'm waiting on results from a super comprehensive, expensive battery of tests with a different top-tier doctor that takes a totally different approach.
I honestly worry that when it comes to people dealing with Dysautonomia (or similar physical conditions), there just isn't enough knowledge or real understanding here in the States.

What does an A+ signify in this context?

So, doctors. For several years running.

wiredpuma5 said:Hi there

I'll get straight to the point: are there any specialists in the US who actually focus on diagnosing POTS or Dysautonomia?
My cardiologists insist my heart is perfectly healthy, but these bouts of tachycardia are seriously tanking my quality of life, even with medication.
It’s like a game of medical ping-pong; my tests always come back normal, so they refer me to psychiatry, who then sends me right back to cardiology. Meanwhile, I'm still feeling just as bad.

Who should I reach out to?

Thanks

Maybe try reaching out to them?
https://www.mayoclinic.org/departments-centers/...
I'd imagine the neurologists at a major center like the Mayo Clinic would handle cases involving Dysautonomia.

Matthew Johnson30 said:Most doctors. For several years running.

Top doctors?
That website?
My own doctor’s profile ranges from total insults to glowing praise.
It can be a useful benchmark, but it isn't gospel; it all depends on who decides to leave a review or a complaint.

Matthew Johnson30 said:Did you check your CK, TSH, T3, T4, ALT, AST, GGT, testosterone, estrogen, prolactin, FSH, LH, or cortisol?
Also, have you ever had mono? Mononucleosis can be a massive trigger for all sorts of trouble down the road.

Don't go hunting for a specific disease diagnosis; specialists tend to act like sledgehammers—they see a nail everywhere they look.
Neurologists will spot Dysautonomia, endocrinologists will find thyroid issues, and cardiologists will point to heart problems.
Very few doctors in the US actually possess a complete, systemic perspective on what a patient is going through.

An A+ doctor diagnosed me with Dysautonomia quite easily, though based on the treatment he prescribed, he was clearly mistaken. Now, I'm waiting on results from an incredibly thorough and expensive battery of tests ordered by a different A+ physician who is taking a completely different approach.
I fear there is simply a lack of both knowledge and true understanding regarding Dysautonomia (and similar physical conditions) here in America.

I’ve had everything tested—a mountain of labs, and everything came back normal. I never had mono. Aside from two bouts of sepsis accompanied by ARDS, that's really it... Holter monitors were fine, ECG was fine, stress tests were fine, ultrasound was fine.
In this country, it's generally difficult to secure a "modern" diagnosis like CFS, fibromyalgia, or Dysautonomia. Though, from what I've gathered, they seem to hand those diagnoses out much more liberally in Western Europe. Either way, you're on your own; you just have to figure out how to manage the symptoms yourself.

Brenda Alvarez24 said:Maybe you should just ask them directly?
https://www.mayoclinic.org/departments-centers/neurology/overview/ovc-20384831
I assume the neurologists at an institution like Mayo Clinic would handle Dysautonomia as well.

The first step is explaining this to my primary care doctor. I’m not entirely convinced they’ll follow my logic, though. :/

wiredpuma5 said:Hey there.

I won't drag this out too much, but I have to ask: does anyone know if there are actually specialists in the States who can properly diagnose POTS—you know, dysautonomia?

I don’t know if anyone here has actually gone through this yet, but in my experience, talking directly to the patient is at least half the battle when it comes to getting an accurate diagnosis. So, I have to ask: how exactly did you all end up with a suspected case of POTS in the first place? Was it just a gut feeling from a doctor, or was there actual clinical reasoning involved? Also, has anyone here actually sat through a tilt-table test yet? I want to know what that's like.
Is this just your own personal hunch, or is there actual data behind it? I need to know: does the heart start racing—just for a few seconds—immediately after you change positions, like moving from sitting or lying down to standing up? Or does it take a few minutes to kick in? Or perhaps it takes much longer? And more importantly, are these bouts of tachycardia happening completely independently of body position? Also, was any of this actually captured on a 12-lead ECG? Just throwing those questions out there to start with.

wiredpuma5 said:According to my cardiologists, there’s absolutely nothing wrong with my heart. They look at the charts, see everything is "normal," and move on. But they aren't the ones living this reality! My tachycardia is absolutely destroying my quality of life, and frankly, even the medication isn't doing a damn thing to stop it. It's infuriating to be told you're fine when you feel like your body is failing you every single day.
Every single time, my results come back perfectly normal. So, what happens? They immediately try to ship me off to a psychiatrist, only for that doctor to just bounce me right back to my cardiologist. It’s constant ping-ponging between specialists, and frankly, I'm sick of it. I'm not getting any better, and I'm tired of being passed around like a hot potato while everyone plays the blame game.

Listen, my colleagues—specifically those who aren't psychiatrists—might actually be dead on here, and honestly, I think they’re right. It’s a good thing, too. That tachycardia you get just from shifting your position (which is basically POTS, isn't it?) is nothing more than... Heart reaction. It’s just... it's performative. It’s someone acting out of some sense of obligation or pity because they think they *should* care, rather than something that actually comes from the heart. There's a massive difference between genuine empathy and just going through the motions because someone else is watching. One is real; the other is just noise.

wiredpuma5 said:Who am I even supposed to talk to about this? Seriously, who is the go-to person here?

Thanks.

Has anyone here actually gone through with a tilt-table test yet? If you have, I’m looking for someone who’s actually done the work—if you've got the results in hand, please reach out. Specifically, if you have a 12-lead ECG and your medical history points toward POTS, then I am more than happy to step in and offer some guidance. I've been looking into this, and I'm ready to share whatever insights I can helpfully provide.

wiredpuma5 said:I’ve gone through everything—literally piles of lab results stacked up—and on paper, it all looks fine. No mono, nothing. Just that whole nightmare with sepsis and ARDS. That was it. Everything else? The Holter monitor came back clear, my ECG is fine, the stress test was normal, and the echocardiogram showed nothing out of the ordinary. Just... nothing.

That’s not just a minor win—that is a massive victory! I am being dead serious here. When you look at the mortality rates for both conditions, they can hit as high as 80% depending on how old you are. Honestly, looking at everything else you've had to endure, I truly hope this is the one good thing that finally offsets all the absolute garbage life has thrown your way.

wiredpuma5 said:It’s honestly such an uphill battle over here when you're trying to get a "modern" diagnosis like CFS, fibromyalgia, or Dysautonomia. It feels like the medical establishment just isn't ready for it. But from what I've gathered so far... Out West. Honestly, they’re just throwing diagnoses around like confetti at this point. It’s absolute chaos. At the end of the day, you have to stop waiting for someone to hand you a roadmap. You need to take matters into your own hands, figure out what's actually happening, and try to manage these symptoms yourself. Stop looking to them to fix everything for you.

Define. The West. Always talking about "the West" like it’s some unified, flawless ideal, when in reality, it's just a collection of different interests constantly bumping heads. It’s all much more complicated than the headlines want you to believe.I don't have that impression, even though I work at that exact same place. I honestly don't know what they're thinking over in the West lately. It feels like everything is just spiraling out of control.Unless there’s some massive payday tied to handing out that specific diagnosis—I mean, if doctors can milk a certain set of procedures just to line their pockets—then sure, maybe that explains why my colleagues over in the West are so damn eager to label everyone with it. Or, I don't know, maybe they’re actually doing legitimate scientific research in that field? If not for one of those two reasons, then honestly, I don't see the motivation at all.

Look, you don't really need that specialized dysautonomia clinic right out of the gate. Honestly, unless by some miracle they actually perform tilt-table testing—which, frankly, I’ve never seen them do, though I haven't exactly gone digging for the answer either—it's probably not worth your time yet.

wiredpuma5 said:I should probably clarify how this usually works for everyone else. I'm not even sure if I'm making sense here :/

So, sending a DM doesn't work for you?
You just take the names of doctors from the neurology department over at Mayo Clinic and Google which private practices they've moved to.

brightgull95 said:I’m not sure if they exist yet, but I do know that talking to the patient accounts for at least half the diagnosis, so: how was the suspicion of POTS even raised? Has anyone here actually undergone a tilt-table test?
Or is this just what feels most likely to you personally? Does your heart start racing (for just a few seconds) immediately after changing positions—moving from lying or sitting to standing—or does it take several minutes, or perhaps much longer? Or does the tachycardia happen completely independently of body position? Was any of this tachycardia captured on a 12-lead ECG? Just some initial thoughts.

My colleagues who aren't psychiatrists might be entirely correct, and frankly, it’s good that they are. Tachycardia triggered by positional changes (which is essentially what POTS is) is merely a heart reaction caused by sympathetic stimulation, rather than an issue originating within the heart itself.

If no one has done a "tilt-table test" yet, find someone who can. If you have those results, a 12-lead ECG, and a medical history pointing toward POTS, I am happy to offer further guidance.

Thanks so much for the information.

The tachycardia subsides while I'm lying down (75-85 bpm, dropping to about 65 at night), but the moment I get up, my pulse jumps to 95-110. It stays like that all day whether I'm sitting or standing. When I'm moving around, like during a walk, my heart rate is elevated, though I don't feel it quite as intensely. My blood pressure is low; it hits 100/48 sometimes, then climbs to 100/75 once I stand up. Based on all of this, I suspect the issue lies more with the brain than the heart.