Long QT syndrome, LQTS, is in most cases a hereditary heart disease and is due to an electrical disorder in the heart’s muscle cells. Many people who carry the disease never get any symptoms. Others get a fast heartbeat that can lead to dizziness and fainting.
Symptoms of long QT syndrome
Most people who get symptoms of long QT syndrome get them during childhood and adolescence, but symptoms can also come later in life. If you have not had symptoms before the age of 40, you are less likely to have it.
The most common symptoms of LQTS are dizziness and fainting. This is because the heart beats so fast that it does not have enough blood to pump to the body and brain. When the heart rhythm after a short while becomes as usual again, you regain consciousness. In rare cases, it can be life-threatening if the heart rhythm remains unusually fast. When you become an adult, the disruption of your heart rhythm usually decreases.
It varies how often you faint. Many who have symptoms of the disease only faint a few times during childhood. Others do it more often.
You may have symptoms of LQTS on the following occasions:
- In physical exertion.
- When you experience strong emotions or stress.
- When swimming or swimming outdoors.
- At loud unexpected sounds.
You may also get symptoms when you are resting or when you sleep, but this is unusual.
When and where should I seek care?
If you have been diagnosed with LQTS and have failed, contact the reception where you have been treated.
Contact a health care center if you suspect you have LQTS, for example, if several in the family usually faint. You can get in touch with most receipts by logging in.
Immediately contact a health care center or an on-call reception if you have unexpectedly fainted when you exerted physical effort. Seek care at an emergency room if it is closed at the health center or on-call reception.
What can I do for myself?
- Restore the salt balance in the body with a fluid replacement if you are or have been stomach sick. Stomach illness or fluid deficiency can interfere with the body’s salt balance. This, in turn, can extend the so-called QT time and trigger abnormal heart rhythm.
- Be careful if you are trying to lose weight. Too low a calorie intake can interfere with the body’s salt balance. This, in turn, can extend the so-called QT time and trigger abnormal heart rhythm.
- Avoid loud unexpected sounds such as loud alarms, other alarms and sharp signals from cell phones if you get symptoms of it.
- Avoid medicines that can prolong QT time. When you are prescribed a medicine, always tell your doctor that you have LQTS. Also tell us if you are considering using herbal remedies, as some of them are unsuitable at LQTS.
With an ECG, the doctor can detect heart disease and disturbances in the heart’s rhythm. The most common sign of illness is an extended so-called QT time at the ECG. The term QT stands for the distance between the measuring points Q and T. The interval corresponds to the time it takes for the heart’s muscle cells to recharge after a heartbeat. For those with LQTS, charging takes longer than usual.
When the diagnosis is difficult to make, the doctor can sometimes get help from the 24 hour ECG or work ECG.
The diagnosis can usually be confirmed by a genetic test. But you can faint for many different reasons and everyone who fails is not genetically tested. Since the disease can be inherited, you should receive information and genetic guidance before the test.
Influence and participate in your care
You can seek care at any healthcare center you want throughout the country. You also have the opportunity to have a regular doctor’s contact at the health center.
In order for you to be able to participate in your care and make decisions, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. You can also ask for information printed so that you can read it peacefully.
Treatment for long QT syndrome
LQTS is usually treated with beta-blockers, a type of drug that suppresses the heart’s rhythm and provides good protection against fainting. It is important that you take the medicine regularly every day.
All children and adolescents who have LQTS should be treated even if they have not had symptoms. You should also be treated if you are an adult and have symptoms or clearly prolonged QT time on the ECG.
Beta-blockers can give too low a heart rate and then a pacemaker can help. In rare cases, it is possible to insert a so-called implantable defibrillator, ICD, which with an electric shock restores the normal heart rhythm.
Heredity and LQTS
LQTS is in most cases a hereditary disease. You run a 50 percent risk of inheriting the disease and getting the disease if one of your parents has the hereditary form of the disease. On the other hand, all carriers do not become ill. You can only get sick and pass the disease on to your biological children if you have inherited it. Hereditary LQTS is equally common regardless of gender.
In most cases, the disease is inherited from one of the parents. It is unusual for a new mutation to occur in a person. Should this occur, the person’s biological children may inherit the ancestry.
About one person in 2000 has a facility for LQTS. But since not everyone has symptoms, the disease can be more common than that.
Pregnancy and LQTS
The risk of dizziness does not increase if you are pregnant. However, the risk is increased up to nine months after birth. It is therefore particularly important that you follow advice and medication during that period.
To be notified of the disease
By knowing that you carry disease, you will have the opportunity to take general advice and advice on preventative medication. The message does not mean that you need to get symptoms.
If a genetic test shows that you carry a mutation that gives LQTS, it confirms a previously made diagnosis. It also says something about the risk to your relatives. You can tell your relatives that there is a gene change in the family that leads to illness. This way you give them a chance to find out if they also carry the plant. They can then receive preventative treatment if needed.
Living with LQTS
You can live a normal life with LQTS if you follow the general advice and are aware of the risks. You do not need to limit your participation in regular physical activity if you follow the general advice and take preventative medicine. You who have had symptoms should avoid high-intensity racing and activities that in themselves involve a risk of fainting, such as climbing in mountains. You should also avoid swimming without the company.