Debra Hawkins, APRN- Heart & Dysautonomia/POTS

04/21/2026

Why heat makes POTS / dysautonomia worse

With Postural Orthostatic Tachycardia Syndrome, your body already has trouble keeping blood where it needs to be.

Step by step what heat does:
Heat causes blood vessels to open (vasodilation)
→ This happens to help your body cool down
Blood moves to your skin
→ Less blood stays in your core and brain
You lose fluid from sweating
→ Blood volume drops
Less blood returns to your heart and brain
→ This is called “pooling”
Your body tries to fix it
→ Heart rate increases (sometimes a lot)

Result:
Lower blood pressure or unstable BP
Faster heart rate
Less blood flow to the brain
How it feels:
Dizziness or near fainting
Brain fog
Heart racing
Weakness
Extreme fatigue

Why it’s worse in dysautonomia: The automatic system that should tighten your blood vessels doesn’t respond well

Heat = open vessels + fluid loss → less blood to the brain → symptoms get worse

04/19/2026

04/18/2026

Living with POTS means your body is constantly trying to keep up. Sometimes, something as simple as hydration can make a big difference. IV infusions aren’t a cure—but for many, they can bring relief, stability, and a little more control over daily life.

04/18/2026

Some days, the hardest part of this work isn’t the long hours or the charting… it’s carrying your stories with me long after I leave the clinic.

It’s hearing how long you’ve been searching for answers. How many times you’ve been dismissed.
How much your life has changed because of symptoms no one else can see. And then going home… but not really leaving it behind.

Because I’m still thinking about you.
Replaying your visit in my mind.
Questioning if I missed something.
Digging through research late at night.
Looking for one more option, one more angle, one more way to help you feel like yourself again.

POTS and autonomic disorders don’t come with easy answers. They don’t fit neatly into boxes and that means your care doesn’t stop when the appointment ends. It follows me into the quiet moments, into the late nights, into the spaces where I’m still trying to connect the dots.

If I ever seem distracted… it’s not because I’m not present. It’s because I’m carrying more than one story at a time.

Yours story, your journey matters.

Every symptom you describe, every frustration you share... it stays with me. And even on the days when we don’t have all the answers yet, please know this:

You are not being dismissed here.
You are not “too complex.”
And you are not alone in this fight.
We’re in it together...even after you walk out the door.

04/16/2026

Salt for Postural Orthostatic Tachycardia Syndrome and low blood pressure autonomias isn’t something you “sprinkle on” and hope for the best. It should be treated like a medication.

That means measuring your intake, spacing your doses, and staying consistent every single day.

Your sodium comes from everything combined: electrolyte drinks, salt tablets, and high-sodium foods. If you’re not tracking it, you’re likely not getting enough to make a real difference.

Many patients assume salt works like sugar for diabetics with low blood sugar....an immediate fix.

It doesn’t.

When you take salt by mouth, it begins absorbing within about 15–30 minutes. The increased sodium helps signal your kidneys to retain fluid and expand blood volume, but it doesn’t work alone. Without adequate water intake, this process cannot occur effectively.

With proper hydration, it typically takes 30–90 minutes to see meaningful improvements in blood volume and symptoms... not instantly.

That “instant boost” some people feel when salt hits their tongue is often a placebo effect or sensory response, not a physiologic change in blood pressure.

The goal is steady volume support, not quick hits.

Bottom line:
✔️ Measure your sodium
✔️ Aim for consistent dosing (minimum 1,000 mg at a time, based on your plan at least 3 times a day)
✔️ Stay ahead of symptoms, not chasing them

Salt works, but only when you use it with intention.

04/15/2026

Keep looking until you find the cause. Could it be May Thurner Syndrome?

04/14/2026

“It’s just anxiety.” .... something many POTS patients hear far too often.

Postural Orthostatic Tachycardia Syndrome is a real, physiologic condition, NOT a mental health diagnosis.

Yes, the symptoms can overlap to a degree…
But the cause is very different.
➡️ POTS is triggered by standing
➡️ It causes a measurable heart rate increase
➡️ It comes with symptoms like fatigue, brain fog, dizziness, syncope, GI issues.... real symptoms, not imagined.

This is your autonomic nervous system struggling to regulate, not your mind overreacting.

Anxiety can coexist, but it is not the root cause.

The most important thing you can tell someone with POTS: “I believe you.”

Consistency with lifestyle changes, the right medications, and a provider who listens can make a huge difference.

You are not crazy.
You are not weak.
And you are definitely not making this up.

04/13/2026

POTS doesn’t just affect your heart.

It affects your entire body.

from head to toe
brain fog
dizziness
GI issues
temperature changes
fatigue
adrenaline surges

and most of it… you can’t see.

This is why so many people feel dismissed

but just because it’s invisible
doesn’t mean it’s not real 🩵

04/12/2026

POTS & Exercise — We are in it for the slow game, success takes time.

If you have POTS or dysautonomia, you’ve probably been told to exercise…
and thought: “there’s no way I can do that.”
That’s where the Levine Protocol comes in.

🫀 What is it?
A structured, gradual exercise program designed specifically for POTS by Benjamin Levine.
It starts lying down or seated and slowly builds up over time.

📊 Does it actually work?
Yes.
Studies showed:
✔️ Improved symptoms
✔️ Better heart rate control
✔️ Increased stamina
✔️ Some patients no longer met POTS criteria

👤 Who is it for?
POTS
Dysautonomia
People who feel exhausted with basic activity
Anyone stuck in the deconditioning cycle

⚙️ Why it works
It helps your body:
💪 Build strength
🫀 Pump blood more effectively
🔄 Improve circulation
🧠 Retrain the nervous system

🔥 Real talk:
Deconditioning is a BIG part of POTS.
Not your fault.
But something we can improve.
Medications help.
Fluids and salt help.

💫 But reconditioning is foundational.

💬 What I tell my patients:
Start small.
Recumbent exercise counts.
Consistency NOT intensity.
Your body CAN adapt. Don’t give up on it.

📎 Want to try it?
There are several versions of this protocol and many major facilities adapt the original Levine protocol to their population.

Here’s a great free guide from Children’s Hospital of Philadelphia (CHOP) which came out several years after and is adapted from the Levine protocol:
https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

04/11/2026

Midodrine: Don’t Quit Too Early

Midodrine is one of the first-line medications used to treat low blood pressure, especially in dysautonomia and hypovolemic or neuropathic POTS. It works by tightening blood vessels, helping improve circulation and reduce symptoms like dizziness, fatigue, and near syncope.

One important thing to know, early side effects are common but temporary. Many patients experience goosebumps, scalp tingling, or even an itchy sensation. This can feel strange, but it’s expected and typically resolves within 10–14 days when the medication is taken consistently.

Too often, people stop a medication before it has a chance to work. Unless you’re experiencing a true allergic reaction, give medications a fair trial—about a month. Sometimes success comes from adjusting the dose or timing, not abandoning the treatment altogether.

Midodrine is a valuable tool, but it’s just one piece of the puzzle. Lifestyle changes, hydration, salt intake (when appropriate), and structured, progressive exercise all play a major role in improving symptoms.

You are not stuck like this. With the right combination of therapies, many patients regain function and get back to a better more functional version of themselves.