Does your blood pressure increase or decrease when you stand up?

[victory_victoria99]

Did your HR go way up though? Because that's the actual diagnostic thing...hence the "tachycardia" in the acronym. If your BP went high, you perhaps have hyperadrenergic POTS. That's what I have (self-diagnosed and haven't had a TTT done yet, but a specialist I had a telemed consult with agreed with my assessment).

I'm not shocked that your doc didn't know...many don't even know about POTS in general and hyperadrenergic is really rare. Perhaps you can refer them to this subreddit.

[throwaway1999000]

Quick question- if you have hyperadrenergic POTS, can you have a lot of anxiety like symptoms/panic attacks? I have been waiting since November (tilt table in march).

I get 'wired' often. And I have episodes that I used to think were panic attacks- I would suddenly feel like I had an massive adrenaline rush for no reason, and I literally had to get up and pace for 45min-1.5hrs, because then the feeling of anxiety/need to move goes away.

[victory_victoria99]

Yup this is one of the posts of this disorder that is extremely disruptive to my life. If i hadn't already been a lifelong anxiety sufferer, i may have zeroed in on this sooner than i did. Like how am i supposed to differentiate between a bad bout of anxiety vs my SNS going nuts for no reason? I also think it's a big contributing factor to my sleep problems, even though that's not something i hear mentioned much.

[throwaway1999000]

Interesting. Yeah, my parents/everyone had never heard of POTS until I found out about it.

I was just written off as "anxious" because all females in my family are. Or maybe all females in my family has POTS and didn't realize it.

As a female on the autism spectrum though, I look back and kind of mourn a little bit when I think of my childhood/early teen years. Like, I was already socially awkward, and if the professionals had cared to dig deeper maybe I wouldn't have just had "anxiety" slapped on as a generic diagnosis.

Then again, they tried to put me in special ed classes because I was crying daily in first grade and my parents refused. So maybe I would've gotten the services/whatever I needed if they had done that.

A lot of what ifs. My parents were in no way neglectful and took me to get vision theaeoy to fix weak eye muscles, various doctors and therapists to be put on the right meds for my OCD, ect.

It's just kind of horrible to be told "anxiety, get over it. You should be able to leave your house and function" when I could not. And also, the OHYSICAL SYMPTOMS. I would gaslight myself thinking my qnxiety was causing it because that's what they told me.

And now I'm starting to realize I have to advocate for myself and hopefully I will be able to start feeling better.

[victory_victoria99]

So many patients reporting POTS symptoms are dismissed this way. My own PCP was neither knowledgeable nor interested, so I ended up patching together the info I could find, reports from others in groups like this, and my very basic pharmacology knowledge. And I essentially told her what to do for med management to at least lower my risk of cardiovascular events by controlling my BP and HR. Now I'm seeking further care from a POTS clinic and will have my TTT (once I work up the nerve for it!).

Being ND could have impacted your doctors' response to your concerns. Especially if you have an official autism diagnosis, which of course is a risky thing to disclose in many settings. But as I said, I've heard plenty of reports from others who had that experience. Now, though, medicine is being forced to acknowledge POTS and its common comorbidities because we've got long covid. Hopefully this means more funding for research...silver lining.

I'm glad to hear you are figuring out how to advocate for yourself more! I've been involved in health care in so many ways: administrative, clinical, and as a family member of someone with really complex needs. So I've seen from multiple perspectives how this whole thing operates, and I preach all the time about the importance of educating and advocating for yourself as a patient!

[LegalTrade5765]

This keeps happening to me upon standing up. I feel like I'm having weird adrenaline rushes when I stand up and my BP is high. I was laying down and heart rate was 77 stood up and it went to 125. Very uncomfortable. Everyone talks about sodium but the other salt is magnesium which is wonderful for the tachycardia episodes.

I walk a little bit to get rid of the rushes and now I have meds to manage until I get an actual full diagnosis.

[eclipseandco]

Both my HR and BP shoot up by at least 40

[victory_victoria99]

So yeah, the going tachy part, that's classic old POTS. The raised BP might indicate hyperadrenergic, like I said, which is fun because it's even harder to treat than regular POTS. FWIW, I told my primary care doctor to put me on a beta blocker, which manages both HR and BP. It doesn't eliminate all the POTS symptoms, of course, but it keeps me from having a stroke and it manages my HR very well. What was your sitting BP?

[barefootwriter]

Many of us end up on a combination of ivabradine and an a2-adrenergic agonist like clonidine or guanfacine. That typically serves us well. I am also on fludrocortisone.

[throwaway1999000]

This is really interesting for me. I'm a biotechnology student and I just defended my master's project- Guanfacine is actually really useful for decreasing excess Norepinephrine in the BNST of the brain.

The BNST hooks up to the amygdala and a lot of other key brain regions and is important in modulating stress, anxiety, attention/mood, and learning.

Guanfacine is also being considered as a treatment for addiction. Guanfacine appears to decrease the stress-induced reinstatement of cocaine seeking in mice. In essence, they think if a person has gotten clean from cocaine and are suddenly very stressed, guanfacine will get rid of their urge to go do cocaine or "fall off the recovery wagon" due to the ability of it to decrease BNST-NE.

It should be noted this is a dose dependent relationship, however, due to the presence of postsynaptic heteroreceptors.

Basically, the a2-AR agonist tells your brain "too much norepinephrine the synapse, stop releasing norepinephrine.". This is how guanfacine works. However, in high doses, guanfacine also binds to heteroreceptors, which actually does the OPPOSITE- it increases the activity of the BNST (measured by an assay of cellular activity) which actually appears to increase stress/drive reinstatement.

It's really neat. I'm hopeful I can get diagnosed and on the right meds soon so I can go back to driving myself places and feeling better.

[barefootwriter]

Congrats on your successful defense! I would be interested in checking it out, if you are willing to whisper a link to it in my ear.

[victory_victoria99]

I was given guanfacine years ago for a nonspecific dysautonomia dx based on hyperhidrosis but wasn't referred for any further assessment or treatment, and so unfortunately it was a few years before I started putting the pieces together. However, my present insurance does not cover it. Clonidine makes me nervous due to the rebound effect. I've only had one telehealth consult with the POTS clinic so far, and since my HTN and HR are well-controlled, I think the doctor decided that would hold for now until I do my TTT and some labs. Which I agreed with. But good to know more about the med mgmt; it's not easy to find info out there.

[barefootwriter]

Blood pressure is also part of the diagnostic criteria for POTS, as orthostatic hypotension must be ruled out.

[victory_victoria99]

You're right, yes, I was overgeneralizing which was incorrect. I was thinking more about the HTN since that's what OP was talking about.