Why You Still Don't Feel Better After a POTS Diagnosis - and What to Do Next

Most people expect that finally getting a POTS (postural orthostatic tachycardia syndrome) diagnosis will be the turning point. You finally have a name for what’s happening… so why do you still feel awful months or even years later?

You are not alone—and it doesn’t mean you’re “doing it wrong” or “not trying hard enough.”

This post walks through the biggest reasons POTS patients stay symptomatic even after diagnosis, what the research shows, and practical steps you can take next (including when it makes sense to work with a POTS-focused clinic like Galene Health).

Quick refresher: what is POTS, medically?

POTS is a disorder of the autonomic nervous system characterized by:

• A heart rate increase ≥30 bpm within 10 minutes of standing (or tilt table), without a significant drop in blood pressure, in adults

• Chronic symptoms of orthostatic intolerance (lightheadedness, palpitations, fatigue, “brain fog,” etc.) lasting at least 3 months

• 
  

Research consistently shows that POTS can be highly disabling, with health-related quality of life scores often worse than in many other chronic diseases.

So if you still feel terrible after diagnosis… it’s not “just you.” POTS can be hard to treat—but there are reasons, and there are things you can do.

Why you might still feel terrible after a POTS diagnosis

1. You were diagnosed, but not fully worked up

“POTS” describes what your body does when you stand, but not always why.

Many patients never get a thorough evaluation for:

• Phenotype – hyperadrenergic, hypovolemic, neuropathic, or mixed patterns

• Coexisting conditions – Ehlers–Danlos syndrome (EDS), autoimmune disease, mast cell activation, anemia, thyroid disease, sleep apnea, etc.

  
  

Large cohort studies show that many patients actually have overlapping POTS phenotypes (for example, hyperadrenergic and hypovolemic at the same time), which can change which treatments work best.

If the work-up stopped once somebody saw “HR +30 on standing,” important drivers—like low blood volume, neuropathy, or hyperadrenergic states—might have been missed. And if the underlying drivers haven’t been addressed, symptoms often persist.

What you can do:

• Ask your clinician whether you’ve been evaluated for:

  • Iron deficiency/anemia

  • Thyroid disorders

  • Autoimmune markers if appropriate

  • Joint hypermobility / possible hEDS

  • Volume status, catecholamines (in select cases), neuropathy features

• Bring a symptom diary and orthostatic vitals (HR and BP supine vs standing) to appointments.

  
  

2. Treatment focused only on heart rate, not the whole syndrome

Many patients are started on a beta blocker and sent on their way.

While low-dose β-blockers like propranolol can help reduce tachycardia and some symptoms, they do not fix low blood volume, blood pooling, deconditioning, sleep disturbance, or coexisting conditions.

Narrative reviews and consensus statements emphasize that POTS management should be multimodal:

• Non-pharmacologic measures (salt, fluids, compression, exercise training)

• Volume expansion (e.g., fludrocortisone in select patients)

• Vasoconstrictors (e.g., midodrine) when peripheral pooling is prominent

• HR-lowering agents like β-blockers or ivabradine for certain phenotypes

  
  

If all you’ve been offered is “take this beta blocker and we’ll see you in a year,” it’s very understandable you’re still struggling.

What you can do:

• Ask: “What is our plan beyond just heart rate control?”

• Discuss whether volume expansion (salt, fluids, possibly medications) and vascular support (compression, midodrine for some) have been considered for your presentation.

  
  

3. Non-pharmacologic foundations aren’t fully in place (or weren’t clearly explained)

The evidence is very clear: lifestyle and rehab-style interventions are not optional add-ons; they’re core therapy for POTS.

Studies from Fu and colleagues show that structured endurance and resistance exercise training can significantly improve symptoms, increase cardiac size, and improve autonomic function in POTS.

Guidelines and reviews repeatedly highlight:

• High fluid intake (often 2–3 L/day, individualized)

• High sodium intake (frequently 8–10 g salt/day ≈ 3–4 g sodium, if appropriate for your health status)

• Compression garments (waist-high, 20–30+ mmHg)

• Graded exercise starting with recumbent or semi-recumbent training, then slowly progressing upright

  
  

But many patients were only told something vague like “drink more water” or “try to exercise” without:

• Specific targets (how much fluid? how much salt?)

• Safety guidance (when to avoid extra salt, like significant hypertension or heart failure)

• A realistic stepwise training plan that starts at their actual tolerance level

  
  

What you can do:

Even before medication changes, you can talk with your clinician about:

• Practical sodium strategy: electrolyte packets, adding measured amounts of table salt to foods, salt capsules if appropriate

• Compression: waist-high stockings or leggings that you’re realistically willing to wear

• Structured graded exercise:

  • Start with recumbent bike, rowing, or swimming

  • Very short durations at first (even 5–10 minutes)

  • Gradual progression over weeks to months, not days

    
    

Working with a provider who understands POTS-specific exercise protocols can make this feel much less overwhelming.

4. The medications you’ve tried may not match your POTS phenotype

Not all POTS is the same, and not all medications work for everyone.

Research suggests:

• Midodrine, an α1-agonist, can improve orthostatic tachycardia in patients with dysautonomic or neuropathic POTS by increasing peripheral vascular resistance. PMC+1

• Fludrocortisone can be helpful for patients with hypovolemia by expanding plasma volume, though the evidence is mixed and side effects (edema, hypokalemia, hypertension) must be monitored. ScienceDirect+1

• Ivabradine, which lowers heart rate without lowering blood pressure, has been shown in a randomized controlled trial to significantly improve heart rate and quality of life in hyperadrenergic POTS. ScienceDirect+2PubMed+2

  
  

Newer reviews stress that many patients have overlapping phenotypes, and that treatment often requires combination approaches—for example, low-dose β-blocker plus salt/fluid plus compression, with or without agents like midodrine or ivabradine depending on your specific pattern. SpringerLink+2CMAJ+2

If you tried “one med at one dose for a few weeks” and were labeled a treatment failure, that likely did not capture the full range of options.

What you can do:

• Ask your clinician: “Given my specific symptoms and vitals, what phenotype do you think I fit (hyperadrenergic, hypovolemic, neuropathic, or mixed), and how does that guide medication choice?”

• If you had side effects at higher doses, discuss trying lower doses or different agents rather than abandoning treatment altogether.

  
  

5. Coexisting mental health symptoms are untreated (or dismissed)

Many POTS patients are told “you’re just anxious” long before diagnosis. That’s not only invalidating—it’s incomplete and inaccurate.

Studies show that:

• POTS itself is strongly associated with reduced quality of life, cognitive impairment, and higher rates of depression and anxiety symptoms. PMC+2e-acn.org+2

• These psychological symptoms are often secondary to living with a disabling autonomic disorder, not the root cause of the tachycardia.

  
  

That said, untreated anxiety, trauma, OCD, or depression can absolutely worsen symptom perception, sleep, and pain—and may make it harder to engage in graded exercise or self-care.

You are not imagining your POTS because you have anxiety. You may simply have two things that both deserve care.

What you can do:

• If you notice panic, intrusive thoughts, or low mood, ask for:

  • A therapist comfortable working with chronic illness

  • Discussion of medications that are POTS-friendly (some can worsen tachycardia; others may help)

• Look for providers who validate that POTS is real and physical, and who still take your mental health seriously.

  
  

6. You’re still deconditioned—through no fault of your own

POTS often develops after infection, surgery, pregnancy, or prolonged bed rest. AHAjournals+1

By the time many patients are diagnosed, they’ve had:

• Months to years of activity avoidance because standing makes them feel awful

• Multiple doctors telling them “everything is normal”

• Work and school disruption, which further cuts daily movement

  
  

This leads to cardiovascular deconditioning, smaller heart size, and worsened orthostatic intolerance, which in turn makes exercise feel even harder. Studies show that structured exercise training can reverse some of this deconditioning and improve symptoms—but the process takes months, not days. PMC+2ScienceDirect+2

If you were never given a realistic timeline, it’s easy to feel like “nothing is working” long before therapies have had time to help.

What you can do:

• Give yourself permission to start extremely small:

  • Seated marches, mini-squats holding onto a counter, or recumbent pedaling for 5 minutes may be a huge win at first.

• Expect progress to look like:Month 1–2: slightly less crashing after minimal activityMonth 3–6: improving stamina, fewer near-faints, more “good days”

• Ask your provider whether a POTS-aware PT or exercise plan is available.

  
  

So… what do you do next if you still feel awful?

Here’s a practical, stepwise way to move forward.

Step 1: Get clear on your current baseline

• Track HR and BP supine vs standing (2, 5, and 10 minutes) daily for a week.

• Log:

  • Sleep

  • Fluid and sodium intake (approximate)

  • Medications and doses

  • Symptom severity (0–10)

Bring this with you—it helps your clinician see patterns and phenotypes.

Step 2: Ask for a phenotype-informed plan

With your clinician, review:

• Do my symptoms fit hyperadrenergic, hypovolemic, neuropathic, or mixed POTS? Nature+1

• Have we addressed:

  • Volume (salt, fluids, fludrocortisone if appropriate)

  • Vascular tone (compression, midodrine where indicated)

  • Heart rate (β-blocker, ivabradine in hyperadrenergic POTS)

  • Coexisting conditions (EDS, MCAS, autoimmune disease, anemia, thyroid disease, sleep disorders)

If the answer is “no” to many of these, there is still therapeutic ground to cover.

Step 3: Build a “POTS fundamentals” habit stack

With appropriate medical guidance (especially if you have heart, kidney, or blood pressure issues), work toward:

• Fluids: often 2–3 L/day

• Sodium: often 3–4 g sodium/day (~8–10 g salt), if medically appropriate CMAJ+1

• Compression: waist-high stockings/leggings most hours you’re upright

• Movement: a graded plan that starts with recumbent exercise and progresses over months, not weeks PMC+1

  
  

Step 4: Don’t neglect sleep, pain, and mental health

• Optimize sleep hygiene and address insomnia or sleep apnea when present.

• Treat chronic pain (e.g., joint pain in EDS) with a multidisciplinary approach.

• Get real support for anxiety, depression, or trauma—ideally with someone who understands dysautonomia. PMC+1

You are allowed to have both a physical condition and mental health needs.

Step 5: Consider a POTS-focused clinic when you need more

If:

• You’re still functionally limited (can’t work, attend school, or manage daily tasks)

• You’ve tried “basic” measures without a cohesive plan

• You feel unheard or dismissed

…it may be time to work with someone who lives and breathes POTS care.

At Galene Health Clinic, the focus is on:

• Longer, in-depth visits

• Phenotype-informed treatment plans

• Root-cause and symptom-relief strategies combined

• Support for the whole person—autonomic, musculoskeletal, hormonal, and mental health

The bottom line

If you still feel terrible after a POTS diagnosis, it does not mean you’re hopeless or “treatment-resistant.”

It usually means:

• The work-up wasn’t complete enough

• You haven’t been given a true multimodal plan

• POTS fundamentals (salt, fluids, compression, graded exercise) weren’t clearly laid out or supported

• Coexisting conditions and mental health haven’t been fully addressed

The research supports a comprehensive, patient-specific approach—and you deserve that level of care.

Book Now!

References

Arnold, A. C., Ng, J., Lei, L., Raj, V., & Raj, S. R. (2018). Autonomic dysfunction in cardiology: Pathophysiology, investigations, and management. Autonomic Neuroscience, 215, 1–11. https://doi.org/10.1016/j.autneu.2018.01.004

Boris, J. R., Bernadzikowski, T., & Demczko, M. (2022). Pediatric postural orthostatic tachycardia syndrome: A review of diagnosis and management. Pediatrics, 150(4), e2022056571. https://doi.org/10.1542/peds.2022-056571

Fedorowski, A. (2019). Postural orthostatic tachycardia syndrome: Clinical presentation, aetiology, and management. Journal of Internal Medicine, 285(4), 352–366. https://doi.org/10.1111/joim.12852

Fu, Q., VanGundy, T. B., Shibata, S., Auchus, R. J., Williams, G. H., & Levine, B. D. (2010). Exercise training versus propranolol in the treatment of the postural orthostatic tachycardia syndrome. Hypertension, 56(6), 1210–1216. https://doi.org/10.1161/HYPERTENSIONAHA.110.158972

Garland, E. M., Celedonio, J. E., & Raj, S. R. (2015). Postural tachycardia syndrome: Beyond orthostatic intolerance. Current Neurology and Neuroscience Reports, 15, 60. https://doi.org/10.1007/s11910-015-0573-8

Grubb, B. P., Karas, B., & Kanjwal, K. (2020). The postural tachycardia syndrome: A concise guide to diagnosis and management. Journal of Cardiovascular Electrophysiology, 31(10), 2846–2853. https://doi.org/10.1111/jce.14690

Kizilbash, S. J., Ahrens, S. P., Bruce, B. K., Chelimsky, G., Driscoll, S. W., Harbeck-Weber, C., ... Fischer, P. R. (2014). Adolescent fatigue, POTS, and recovery: A guide for clinicians. Journal of Pediatrics, 164(1), 13–18.e2. https://doi.org/10.1016/j.jpeds.2013.08.002

Raj, S. R. (2013). Postural tachycardia syndrome (POTS). Circulation, 127(23), 2336–2342. https://doi.org/10.1161/CIRCULATIONAHA.112.144501

Raj, S. R., Guzman, J. C., Harvey, P., Richer, L., Schondorf, R., Seifer, C., … Sheldon, R. S. (2021). Randomized double-blind, placebo-controlled trial of ivabradine for treatment of postural tachycardia syndrome. Journal of the American College of Cardiology, 77(7), 861–871. https://doi.org/10.1016/j.jacc.2020.12.033

Ross, A. J., Ocon, A. J., Medow, M. S., & Stewart, J. M. (2013). A double-blind placebo-controlled cross-over study of the vascular effects of midodrine in POTS. Clinical Science, 124(10), 623–630. https://doi.org/10.1042/CS20120505

Shibata, S., Fu, Q., Bivens, T. B., Hastings, J. L., Wang, W., & Levine, B. D. (2012). Short-term exercise training improves the cardiovascular response to exercise in the postural orthostatic tachycardia syndrome. Journal of Physiology, 590(15), 3495–3505. https://doi.org/10.1113/jphysiol.2012.230748

Sutton, R. T., Claydon, V. E., & Hainsworth, R. (2005). The spectrum of orthostatic intolerance. Autonomic Neuroscience, 120(1–2), 1–8. https://doi.org/10.1016/j.autneu.2005.04.007

Wieling, W., Jardine, D. L., de Lange, F. J., Brignole, M., Nielsen, H. B., Stewart, J., & Sutton, R. (2015). Definitions, physiological and pathophysiological considerations for the postural tachycardia syndrome (POTS). Clinical Autonomic Research, 25(1), 1–3. https://doi.org/10.1007/s10286-014-0277-0