Your Dysautonomia Care Plan

What's in this guide

1. What dysautonomia is

Dysautonomia is a problem with the part of your nervous system that controls things you don't think about — your heart rate, blood pressure, digestion, sweating, and how blood flows when you stand up. When that system isn't working well, standing up can make your heart race, your blood pressure swing, your head feel foggy, and your energy crash.

Your care team has enrolled you in the HeartAge+ Dysautonomia Pathway. This is a structured plan that combines:

• Daily habits — fluid, salt, compression, gentle movement
• Symptom tracking — short check-ins through the patient portal
• A graded exercise program — designed to rebuild your tolerance to standing without making you crash
• Medication review — adjusted by your physician based on your phenotype
• Specialist referrals — when needed (for example, IVIG infusions for the autoimmune subtype are ordered by your physician but given at an outside infusion centre)

Your subtype and phenotype

Your physician has classified your dysautonomia. You'll see one of these on your dashboard:

2. Your daily care plan

Six things, every day. Treat them like medication.

3. Filling out your daily log

The daily log is the single most important thing you do in the portal. It takes about 90 seconds. Open app.heartage.ca → Dysautonomia → Daily Log.

What you'll log

• Fluid intake (use the +250 ml / +500 ml buttons)
• Salt tablets and electrolyte drinks (counters)
• Dietary sodium estimate (low / medium / high)
• Symptom severity, 0–10, for: presyncope (near-fainting), fatigue, brain fog, palpitations, nausea
• Any syncope or presyncope events that day (number of episodes)
• Compression worn — pick from: knee-high stockings, thigh-high, abdominal binder
• Medications and supplements taken (yes/no)
• Exercise: type, duration, position (recumbent / seated / upright), average HR if you have a wearable
• If you're in the gluten-free trial — was today gluten-free?
• Any free-text notes

Why this matters

The patterns in your log drive everything else: when your physician adjusts medications, when your coach calls to encourage you, when the exercise program advances or holds, and what gets discussed at your next appointment. Three days of missed logs and your coach gets a flag to reach out. Three days of fluid below 2 L and the portal nudges you.

4. Questionnaires we'll ask you to complete

Daily logs capture day-to-day; questionnaires capture how things are going overall. The portal will prompt you when each one is due. None should take more than 5 minutes.

5. The stand test and what comes after

The active stand test is a 20-minute office procedure that quantifies how your heart rate and blood pressure respond to standing. It's the most important diagnostic test for POTS and orthostatic hypotension.

Before your stand test — preparation matters

What the test looks like

1. You lie flat for 5–10 minutes while resting heart rate and BP are recorded.
2. You stand up. HR and BP are measured at 1, 3, 5, and 10 minutes.
3. You can hold onto something for safety; the test ends early if you feel like you're going to faint.

What we measure

• Maximum heart rate increase — ≥30 bpm (≥40 if under 20) without a BP drop = POTS criteria met.
• Blood pressure drop — SBP ≥20 or DBP ≥10 = orthostatic hypotension criteria met.
• Symptoms during the test — checked off by the clinician.

The 24-hour follow-up

One day after the test, the portal will send you a notification asking you to complete the VOSS questionnaire — nine quick symptom ratings about how the test made you feel. This is much more useful than asking you in the room while you're still recovering. Please fill it out; your physician uses it to track whether your reactivity is improving over the course of treatment.

6. Your exercise program

The exercise program is the single most effective treatment for POTS and most other dysautonomia phenotypes. It is also the easiest one to sabotage by trying to do too much. Follow the program. Do not improvise.

How it works

• The default program is a modified CHOP protocol — 7 months of progressive cardiovascular reconditioning, starting recumbent (lying or seated).
• You start with short sessions on a recumbent bike, rowing machine, or floor exercises.
• Weekly, the portal evaluates your last two weeks of logs and recommends whether to advance, hold, or step back.
• You only graduate to upright training (regular bike, walking, elliptical) after sustained recumbent tolerance, usually around month 3.

Heart rate zones

The portal calculates five training zones (recovery, base, MSS, race, interval) from your max heart rate using the Karvonen formula. Today's prescription is shown with a coloured target band. Use a chest strap or wrist wearable; if you don't have one, count your pulse for 15 seconds at a few points during the session.

Cool down properly

Don't stand up immediately after a recumbent session. Cool down for 3–5 minutes still seated, drink fluid, and rise slowly. Many patients faint not from the workout but from standing up too fast afterward.

7. If your dysautonomia started after COVID

Long-COVID-related dysautonomia (most often POTS) is common — between 30% and 80% of Long COVID patients have some autonomic dysfunction. The pathway treats it as a distinct phenotype with three differences from classical POTS:

1. You'll be screened for post-exertional malaise (DSQ-PEM) at enrollment, every 4 weeks, and any time your symptoms flare. PEM-positive status changes the pace of your exercise program.
2. Your exercise progression is more conservative. Even if your daily logs look good, the portal won't push you forward as aggressively if PEM is in the picture. This protects you from multi-week setbacks.
3. You may be a candidate for IVIG. If lab work suggests an autoimmune component (positive autoantibodies, abnormal nerve fibre density on skin biopsy), your physician may refer you to neurology or immunology for IVIG infusions. PACE does not administer IVIG itself; the infusions happen at an outside centre, and PACE coordinates and tracks the cycles.

8. Gluten-free diet trial (only if asked)

A subset of dysautonomia patients have improvement on a strict gluten-free diet, especially if labs suggest gluten sensitivity or if GI symptoms dominate. If your physician puts you on a 28-day GF trial, you'll see a Gluten-Free Trial card on your dashboard.

How the trial runs

1. Day 0: pre-trial symptom snapshot is captured (your most recent COMPASS-31 plus a brief GI-focused score).
2. Days 1–28: you log a daily GF compliance toggle in your daily log. Coaches send weekly check-ins.
3. Day 28: post-trial symptom snapshot is captured. The portal shows side-by-side comparison.
4. You and your physician decide whether to continue GF based on the comparison.

The trial is not a diagnosis of celiac disease. If your celiac antibody test is positive, that is handled separately — talk to your physician.

9. Medications and IVIG

Standard medication tiers

Your physician will work through three tiers. The portal records each medication, your effectiveness rating (1–5), and side effects so the picture stays clear over time.

Ivabradine

If you're started on ivabradine, the typical regimen is 5 mg twice daily, titrated to 7.5 mg twice daily as tolerated. If your resting HR drops below 60 bpm or you feel symptomatic, the dose is reduced to 2.5 mg twice daily. A safety check happens at 7 days. While titrating, the portal will switch your OHQ/OIQ and MAPS questionnaires to weekly until the dose stabilizes.

IVIG referral only

For patients with an autoimmune phenotype (positive autoantibodies and/or abnormal small-fibre density on skin biopsy), IVIG can be effective. PACE Cardiology does not administer IVIG. Your physician will refer you to a neurologist or immunologist who manages the infusions, typically at a hospital infusion clinic.

When the infusion centre sends back reports, our coordinator transcribes them into your record so you and your care team can see your IVIG cycles alongside your symptom trends in one timeline. You don't need to do anything for this — just send any infusion reports to the clinic if they aren't sent automatically.

Typical RECOVER-protocol regimen: 2 g/kg per month for 9 months, with a dose cap at 80 kg of body weight. Pre-medications (saline, acetaminophen, loratadine) are usually given to reduce side effects.

10. Getting help and what to watch for

Reach out to your coach or physician through the portal if:

• You've had a fainting episode
• You've had multiple near-fainting episodes in a single day
• Your resting heart rate is consistently above 100 or below 50 outside of normal exercise
• Your blood pressure swings above 160/100 or below 85/55
• You're hitting fluid and salt targets but symptoms are getting worse, not better
• A new medication caused side effects you're not sure about

Go to emergency or call 911 if:

Dysautonomia symptoms can feel scary but are rarely dangerous on their own. Use the list above as a separator between "log it and message your team" and "this needs urgent evaluation".

Where to find things in the portal