Autonomic Dysfunction in Long Covid

The last time I spoke to my POTS specialist I told him about the problems I was having with my bladder. I wee all the time. I have little warning that I need to wee. I need to wee the minute I stand up. I don't know I need to wee if I have been lying down then I stand up and then I have to go almost immediately. I have had accidents because of this. There is just no warning and I can't get to the toilet in 4 seconds.

Earlier on in my Long Covid I would often just be incontinent. This still happens if I have a POTS relapse.

I know that post-COVID POTS is likely due to the small nerve fibres being damaged or killed as a result of prolonged inflammation/autoantibodies and this has resulted in most of my dysautonomia symptoms including peripheral neuropathy ( damage to the nerves in the hands and feet leading numbness, burning and tingling) then why not in my bladder too?

He listened to me and said yes it was a common problem in POTS and then said he would refer me for specialist nerve tests and to see a urologist-gynaecologist. This with the proviso - "be prepared to wait a while". In doctor-speak this means 2 years plus.

Meanwhile I am resorting to "period pants" and have stuck myself on HRT as that's what an uro-gynaecologist will do anyway.

For me it's great when a paper like the one below is published. I only know of a handful of people post-COVID who are experiencing bladder issues like mine.

Studies may not offer cures yet but they are certainly very validating. They also increase awareness in the medical profession for those suffering from M.E/CFS as they too have orthostatic intolerance and for those with POTS which receives little recognition.

"Autonomic dysfunction in post-COVID patients with and without neurological symptoms: a prospective multidomain observational study" published in the Journal of Neurology, August 2021.

Why did they do it?

The autonomic nervous system (ANS) can be affected by COVID-19, and dysautonomia may be a possible complication in post-COVID individuals.

Orthostatic intolerance (OI) including orthostatic hypotension (OH) and postural tachycardia syndrome (POTS) have been suggested to be common after SARS-CoV-2 infection

Orthostatic intolerance (OI) is the development of symptoms when standing upright that are relieved when reclining.

What did they do?

The Composite Autonomic Symptom Scale 31 (COMPASS-31) questionnaire is a widely validated tool to assess symptoms of ANS dysfunction, and it evaluates six domains related to ANS function:

  • Orthostatic Intolerance - lightheadness, dizziness, fainting on standing,

  • Vasomotor - for example hot flushes, night sweats, palpitations, changes in blood pressure, cold hands and feet

  • Secretomotor - abnormal sweating, inability to tolerate heat, dry eyes, dry mouth.

  • Gastrointestinal - gastroparesis (bloating, nausea, and vomiting) diarrhoea, constipation

  • Urinary - urinary frequency/urgency, incontinence, or urinary retention

  • Pupillomotor - light sensitivity, visual blurring and pupillomotor dysfunction

The aim of the study was to administer the COMPASS-31 questionnaire to a sample of post-COVID patients with and without neurological complaints. Participants were recruited among the post-COVID ambulatory services for follow-up evaluation between 4 weeks and 9 months from COVID-19 symptoms onset.

Participants were asked to complete the COMPASS-31 questionnaire referring to the period after COVID-19 disease. Heart rate and blood pressure were manually taken during an active stand test for OH and POTS diagnosis.

One-hundred and eighty participants were included in the analysis (70.6% females, 51 ± 13 years).

(Previous posts cover POTS diagnostic features and the active lean test)

What did they find?

180 participants were included in the final analysis (70.6% females, 51 ± 13 years).

Among these, 97 were characterized by neurological manifestations:

  • muscle pain 22.7%

  • headache 13.4%

  • hyposmia/hypogeusia 37.1%

  • dizziness 7.2%

  • sleep disturbances 10.3%

  • “brain fog”/cognitive deficit 42.3%

Just under half did not present with neurological symptoms but reported other post-COVID complications:

  • 61.3% exertional breathlessness

  • 29.1% joint pain

  • 9.4% other issues


  1. Significant prevalence of autonomic dysfunction in post-COVID patients. 25% of the participants had "global dysautonomia" - deficits in all aspects tested.

  2. Median COMPASS-31 score was 17.6 (6.9–31.4), with the most affected domains being orthostatic intolerance, sudomotor, gastrointestinal and pupillomotor dysfunction.

  3. A significant higher COMPASS-31 score was found in those with neurological symptoms due to more severe orthostatic intolerance symptoms

  4. Significant gastrointestinal, urinary, and pupillomotor domains were more represented in the non-neurological symptoms group.

  5. Autonomic dysfunction was more common in females and not age related.

  6. 25-50% of the sample reported some sort of urinary dysfunction, including both involuntary voids and voiding difficulty.

  7. Other dysfunctions include reduced tolerance to environmental conditions and sexual impairments.

What did they conclude?

This study conducted in post-COVID individuals with and without neurological manifestations revealed that most of the sample was characterized by dysautonomic symptoms, as reported with the COMPASS-31 score.

Orthostatic intolerance, sudomotor, gastrointestinal, and pupillomotor abnormalities were commonly reported as complications of COVID-19.

After an active stand test, about 10% of the individuals were characterized by a fall in blood pressure suggestive of orthostatic hypotension.

Taken together, these findings confirm the hypothesis of an autonomic nervous involvement after COVID-19, and recommend further clinical and research evaluations in post-COVID individuals with and without neurological symptoms.



Download PDF • 127KB

160 views0 comments

Recent Posts

See All