| Author | Message | ||
     kerry |
Before i recieved my treatment of beta blockers i was told to avoid having a telephone or an alarm clock in my bedroom, To avoid sudden noises or shocks etc. Does this still apply now i am on beta blockers or do i still need to be careful, I know you can still have problems on beta blockers but even to this degree?? How at risk am i on a beta blocker?? I had a very long QT interval of around 568 but apparently it is perfect now,, I dont know how this works.. Could any body please advise on this..? I do not have an ICD though... Kerryx | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
The risk on betablocker therapy is low but not zero. The risk for a syncope on betablockers depend of the type of long QT syndrome. For the most common type (LQT1) more than 80% would never experience any symptoms anymore. Of the remainder some of them probably had stopped taken their medicine, so only a minority continues to faint. In that case an ICD could be discussed in my opinion. Most patients getting symptomatic faints and very few of them are having a cardiac arrest. In conclusion your risk is not zero but low. | ||
| Manju |
Hi, My husband was diagonised with long QT with QT interval of 512 ms when he fainted. he had an ICD implantation last sep, but in his next checkup in Dec, his QT was 412ms. I wanted to know if this is normal ? Could you please help me...Interesting to see Kerryx case, where her QT came back to normal too...I would like to know how soon it happened...please... | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Dear Manju The QT interval needs to be corrected for the pulse rate. I can have a qt interval of 0.53 sec and its normal (with a pulse of 40), on the other hand a QT interval of 0,37 could be abnormal (i.e. with a pulse rate of 140). The corrected QT called QTc is the parameter of interest, and is calculated as QTc = QT/(squareroot(60/pulse rate)) Furthermore the QTc can vary alot even in the same person, and some long QT patients have normal QTc at some days and prolonged at other days. They still have Long QT syndrome and have a risk for fainting. | ||
| Cliff |
Dr.Kanters, 1. Is the risk of fainting related to the QTc value at that specific time. In other words does the risk vary proportionately in the same person depending upon their QTc at the time ? 2. Also, how quickly does an individuals QTc usually vary and do we know much about how and why ? Thank you Cliff | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
1. yes the risk increases with the QTc. 2. It can changes very quickly, within a few heart beats. It is affected by the autonomous nervous system and the heart rate. | ||
| Cliff |
Having had 4 faints in 1 year (1 whilst swimming and genetic test confirms LQT1) but now taking a daily beta-blocker no faints for 2 years and leading a normal life, would you agree the risk to my 8 year old son is now low ? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
In LQT1 betablockers is especially effective. The risk is therefore generally low. | ||
| PUNKIE |
I HAVE AN 8 YEAR OLD GIRL WHO HAS DAYS OF DIZZINESS OF AND ON ALL DAY THE LAST TIME SHE HAD A BAD DAY AS WE CALL THEM HER QT ON 1 EKG WAS LONG THEN WE HAD STRESS TEST AND 4 OTHER EKGS AND 2 OUT OF 5 HAS A LONG QT OF 473 AND THE OTHER 482. IS THIS A COMMON THING? SHE HAS HAD DIZZY SPELL FOR ALMOST ALL HER LIFE AND THE KEEP DO MRI'S AND EEG'S OF HER HEAD AND NOTHING. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I guess you mean QTc since it is the relevant parameter for LQTS. Unless you have LQTS it is not common to have so long QTc values. Is the diagnosis of LQTS made? | ||
| PUNKIE |
YES AT LOWER END SHE SAID. WE ARE GOING TO SEE ANOTHER CARDIOLIGEST THAT SPECILIZES IN THIS BUT THE FIRST CARDIOLIGEST SAID THAT DIZZY SPELL ARE NOT PART OF IT. I HAVE READ MORE AND THEY TALK ABOUT DIZZINESS BEING A SYMPTOM. THEY TESTED MY HUSBAND AND MYSELF AND HER BROTHER BUT WE DON'T SHOW SIGNS AND I WOUNERED IF IT IS ALWAYS PASSED DOWN OR CAN YOU JUST GET LQT? IS THIS VERY COMMON? WE HAVE NEVER HEARD OF IT AND NO ONE ELSE WE HAVE TALKED TO HAS NEVER EITHER. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Normally LQTS is inherited, but in some cases a child is born with genetic LQTS without the parents having it. Another possibility is that either of the parents have it without EKG changes (A silent gene carrier). Only genetic testing can reveal that. | ||
| PUNKIE |
CAN THIS (GENE TESTING) BE SEEN IN AN AMNIOSENTICES WHILE PREGNANT? OR IS THERE SPECIAL TEST FOR IT AND SHOULD OTHER FAMILY MEMBERS BE TESTED? MY BROTHER IS 48 AND HAS A HISTORY OF FAINTING BUT WE JUST THOUGHT IT WAS BECAUSE HE WAS STRESSED. WHAT KIND OF TEST SHOUD I ASK FOR SHE (MY DAUGHTER) HAS A LITTLE BROTHER WHO IS 5 BUT NEVER HAD ANY PROBLEMS. | ||
| Sherry Robinson |
punkie...I am not a doctor, but a LQTS patient - I cannot stress enough the importance of getting to a Doc who is going to DO something for all of you. I was put off almost too long, I have an ICD and am on Beta-blockers..this is life saving for me. I am 32 and have experienced over 4 cardiac arrrests, plus 100's of fainting spells which could have easily ended my life... I was 10 when this started. Please go see another doc! and send your Bro too. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Genetic testing is first performed in the patient who first was diagnosed in the family (the proband). It is a cumbersome and costly process since many genes has to be investigated. Not all LQTS patients can be detected with genetic testing since some probably have mutations in genes which are unknown. In my clinic we identify 80% of LQTS patients, and most of the not identicable patients are solitary without any family history or affected family members. Since the have prolonged QT intervals and often syncopes I have no other possibility to call it LQTS, but they are clearly different to other LQTS patients. In less than 10% of the cases I have a clearly genetic variant without detectable mutation with more than 1 affected members of the family. If a patient is referred for LQTS evaluation, the whole family should be examined. That includes the patients parents and children. LQTS is a family disease. 50% of all LQTS patients will never experience any symptoms in their whole life, so even asymptomatic subjects who are related to a Long QT patients should be examined. When genetic screening has identified a mutation, it is fairly simple to test the rest of the family for the same mutation. Sometimes one will see that the mutation is inherited in a subject without any QT prolongation or symptoms, and then hes/her children could be affected too. I dont recommend prenatal examination. With proper treatment and diagnosis LQTS patients have nearly normal lifelength (seen as a group as a whole. There is always unlucky stories). Therefore I would not recommend an abortion for a LQTS fetus, but put it on betablockers when diagnosed after birth. | ||
| PUNKIE |
I AM SORRY YOU MISS UNDERSTOOD ME. I HAD A AMNIO WHEN I WAS PREGNANT WITH HER AND THEY WERE CHECKING FOR DOWNS AT THE TIME TOO. WHAT I WANTED TO KNOW IS WHEN THEY DO THE AMNIO CAN THEY SEE THIS? MY HUSBAND AND I ARE OLDER AND EACH HAVE 1 CHILD OLDER WITH DIFFERENT PEOPLE. I WAS WONDERING ABOUT THEM TOO. THANKS FOR HELPING! WE ARE STILL LEARNING ABOUT ALL OF THIS AND ARE GOING TO SEE A NOTHER CARDIOLIGEST THAT WORKS IN THIS FIELD. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is possible to do the LQTS test on an Amnio. It is not a standard test unless asked for, and if they not are in contact with a research laboratory it may be impossible. But in theory its possible. If your kid have LQTS there is a great likelihood that either you or your kids father has LQTS. | ||
| Rethaqt Username: Rethaqt Registered: 07-2006 |
I have an ICD which was implanted on July 3, 2006. This was after several episodes of cardiac arrest on June 24, 25 and 26. I was approximately 4 hours away from home. They started me off on beta blockers but this didn't stop the episodes. I was on a ventilator and a feeding tube so they started me on 150 mg of flecainde twice a day which is working. Should I be taking a beta blocker (Toprol XL) also now that I'm at home?\ Thanks. Retha |