| Author | Message | ||
     Rob Claus |
I have an adjusted QT interval around 450, although it's been shorter on recent EKGs. I have never had symptoms. I am taking beta blockers, but one EP recommended I get a defibrillator due to family history (sister died at age 30, in her sleep, never had an EKG in her life so we don't know for sure what it was). Is anyone else here asypmtomatic, and what treatment are you getting? | ||
| jmac |
I'm sorry for the loss of your sister. I did not have symptoms until age 53 but was diagnosed at 50 in routine physical. I had taught swimming for 25 years, rode horses and led extremely active life up until faints started. To make a long story short, I started betas and a year later ended up with ICD. Symptoms can start seemingly overnight as mine did and "one" may be the only one you get. If you have LQT, you have it, consider yourself lucky to KNOW, unfortunately many never get that chance. I certainly feel safer knowing I have an ICD just incase. I know if you have a family that died suddenly and unexplained it puts you at much higher risk than those who have no family history. Please don't ignore your docs, get 2nd opinion if uneasy. I also had several ECG's where QT's were in normal range but even those had abnormal T-waves. Your QT's are not the only thing they look at on ECG to diagnose. Those so-called "normal" ECG's do give you a good feeling but false sense of security as I found out. Jmac | ||
| Debbie |
As with my family we never even heard of lQT until my niece died in her sleep at age 22. My sister was misdiagnosed over 20 years ago for epilepcy. She is the one that found out that her daughter had long QT. Since then my sister has had a ICD unit put in. I have showed boarderline. My doctor isn't sure what to do with me I have passed out most recent 2 years ago after taking cold medicine. I'm on a beta-blocker and until and hopefully they find the gene so far no luck he tells me to live like I have it. It's very scary at times. I don't want a ICD I would lose my job being I'm a welder but I think that it would be nice to have a back up. | ||
| gayle lynch |
I just had my first EKG at age 42 b/c of some chest pressure in the past few weeks.Nothing big. EKG showed long qt interval, so I'm off to have a stress test, blood workup,etc. My brother died in his sleep at age 20 and both my father and I have a history of fainting under emotional orpsychic duress, although I haven't fainted for about 20 years. I have always had such difficulty with running AND swimming that I've had to give them both up as physical activities! I'm stunned to find out that I fit the profile, and though the diagnosis has not yet been confirmed,I'm scared.If I'm going to be treated with beta-blockers, will I be able to exercise? Does anyone wear a medical bracelet? | ||
| jmac |
Knowing is half of the battle. I always wear medical wrist ID. I also take betas. It made me very tired, some people it doesn't bother too much, others is does. Just know that if you DO have it, it is not the end of the world. You can lead fairly normal life with meds or even like myself, with the ICD and meds. Just be persistent and continue to ask questions. The more you know, the better off you are. Good luck in your quest for answers. Jmac | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Maybe you should have a second opinion from an expert center like Arthur Moss in Rochester, NY. | ||
| Denise Stow -Williamson |
My son was diagnosed with long QT by ecg in 1987, this was confirmed as LongQT1 around 1997 by genotyping. I was confirmed as having long Qt by 24 hour ecg and stress tests around 1998. Neither of us has had treatment as we were asymptomatic and the cardiologist at he time felt it unnecassary. My son is now 30 and has not had an episode since diagnosis,(since puberty) and I have been asymptomatic for about 25 years. we both live normal lives. My son has now got a new baby, diagnosed with long QT1 by ecg and genotyping. His QT interval is 540msec. My son and daughter in law are very reluctant to start a new baby on Beta Blockers as they are unsure of the long term side effects on a child so young. What is your opinion? Have there been any studies? Is there any evidence of long term mental health issues? Also do you know of any LQT experts in the UK. Thank you so much for this website. I have been struggling with this disorder for 28 years, since my sons first episode, when no one would believe he had not just fainted. It's wonderful to have so much information. Thanks again. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I recommend everybody under 40 of age starting betablockers even when they are asymptomatic | ||
| Bionic Roadrunner |
Denise, for a doctor in the UK, try to contact www.sadsuk.org It is an affiliate of www.sads.org in the States. They might be able to help you. Good luck. | ||
| Matt |
Where are you based in the UK ? | ||
| Wendy Matt |
When I was a teenager, I was on the beta-blocker Inderal ~ it causesd nightmares in me and I awoke terrified & in arrest ~ this happend 3 times over a month. My doctor took me off my beta-blocker and on anothrt beta-blocker, Corgard (nadalol) | ||
| Denise Stow-williamson |
thank you for your answers. I live in Manchester, my grandson lives in Birmingham | ||
| Matt |
Denise, I would recommend Dr.Wren at Newcastle. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Professor Bill McKenna is one of the most wellknown experts in the world of inherited arrythmias. He is located in London at the University College London. w.mckenna@ucl.ac.uk | ||
| Peter |
My son had a cardiac arrest on April 27th. Fortunately, he was revived and fully recovered. An ICD was implanted and he is on Nadolol. He and the rest of the family were genetically tested. The children's hospital referred my daughter and myself to an adult electro physiologist. The genetic test on my son has come back as LQT2. 1) I have a qt of 473ms. I am almost 44. I have never had a faint or an arrest. My mother died at 43 from unknown causes (she did faint a couple of times in the year(s) preceding her death. The closest I have come is what I refer to as "greying out" -- I remain conscious and stable on my feet but have feelings in my head of sinking and feeling like I might possibly faint. I felt these approximately 8 years ago and they were diagnosed as anxiety attacks. These feelings just recently started again after my son's incident. Is this probably anxiety? 2)My cardiologist has my daughter and myself do an ecg, a holter, an exercise stress test. He wants to do an adrenaline infusion. Knowing that my son has LQT2 -- does the infusion still make sense? (my results of genetic testing will be forthcoming). 3) Should I be placed on beta blockers immediately? My caridologist is waiting for my final results (adrenaline) and a consult on Aug 4th. 4) Prior to LQT2 determination my son was advised no competitive sports. With LQT2 is there any reason other than ICD protection to stay out of contact sports? | ||
| Bionic Roadrunner |
Peter, there is only one question that I will address since I have no medical background except my own experience with long QT for 15 years. With all the respect due to your doctors, some are very prompt at diagnosing a patient with anxiety when they do not know what the problem is. You have a family history of unsolved fainting episodes and death (your mother). Your son has LQT2. You may never have fainted but you do have some symptoms of near fainting. Stress is also a very important trigger in LQT2. It seems to me (and again, this is just my humble opinion) that all precautions should be taken with you. I know some doctors do not think it is necessary to treat patient after 40 if they have been asymptomatic, but LQTS is a very treachearous disease and by their own recognition, doctors do not know enough yet to determine who will or will not ever have any problem, even when genetically proven to have the disease. I have been told by an expert that they were working on trying fo find out which patients will be more at risk but they are not there yet. Your symptoms might have nothing to do with LQTS, but putting you on beta blocker therapy for a few weeks until you get your tests results would not hurt you unless the doctor found a reason not to do so. One of my children who was about 21 or 22 at the time I was diagnosed was put on preventive beta blocker therapy because the doctor found her EKG to be borderline and even though she never had any symptom of any kind. She was later found to have the gene and is still on medicine. I am sure that people on this forum who have seen the devastating effects of LQTS in their family would not have minded their children or brother or sister to be on beta blocker for a while while waiting to be diagnosed rather than being dismissed with the wrong diagnosis... Good luck to you and your family - Stay well. |