Long qt syndrome

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is long qt syndrome?

Long QT syndrome is a disorder of the heart's electrical activity that can cause a sudden, uncontrollable, and dangerous heart rhythm. It is so named because of the appearances of the electrocardiogram (ECG/EKG), on which there is prolongation of the QT interval.

Common symptoms reported by people with long qt syndrome

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people with long qt syndrome

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Cannabidiol oil)
Type
Other
How many have tried
2
Tried for
pain (2) anxious mood (1)
Treatment name(s)

(Corgard)
Type
Prescription Drug
How many have tried
2
Tried for
long qt syndrome (2)
Treatment name(s)

(Tenormin)
Type
Prescription Drug
How many have tried
1
Tried for
long qt syndrome (1)
Treatment name(s)

(Salonpas)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Duragesic)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Type
Equipment
How many have tried
1
Tried for
long qt syndrome (1)
Treatment name(s)
Type
Equipment
How many have tried
1
Tried for
long qt syndrome (1)
Treatment name(s)

(Metoprolol Tartrate)
Type
Prescription Drug
How many have tried
1
Tried for
long qt syndrome (1)
Treatment name(s)

(Remeron)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)

Data from patients with long qt syndrome, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with long qt syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Cannabidiol oil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
3
Tried for
pain (2) anxious mood (1)
Treatment name(s)

(Corgard)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
long qt syndrome (2)
Treatment name(s)

(Tenormin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
long qt syndrome (1)
Treatment name(s)

(Salonpas)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Duragesic)
Perceived effectiveness
for pain (1 evaluation)
Side effects
acute hearing brain fog 3 more
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Vistaril)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
long qt syndrome (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
long qt syndrome (1)
Treatment name(s)

(Metoprolol Tartrate)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
long qt syndrome (1)
Treatment name(s)

(Remeron)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
anger
Total evaluations
2
Tried for
depressed mood (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with long qt syndrome, who reported starting treatments within the last 5 years.
Last updated:

Who has long qt syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 17
30s 24
40s 16
50s 25
60s 17
70+ 2
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 16
20-29 years 6
30-39 years 5
40-49 years 7
50-59 years 6
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 14
Female 90

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 58
Not Diagnosed 7

These charts show data from long qt syndrome patients who have completed their condition history
Last updated: