| Author | Message | ||
     Cindy Bonasse |
I am curious if anyone with Long QT has bad anxiety with their ICD. I am having a terrible time with anxiety and having to get professional help with it. I have found though that alot of the meds to help with the anxiety are listed on the longqt.org drug list. This makes my anxiety worse. I have had several sleepless nights like tonight and it has gotten very hard to deal with. God Bless Cindy | ||
| Bionic Roadrunner |
Cindy, I just answered your question on your first post titled "ICD Firing". Check it out and hang in there, it will get better! | ||
| Lisa Baker |
Do you think that having the icd gives a patient a false sense of security? My 12 year old son thinks he can now play basketball because he has a back up so to speak. Lisa | ||
| Bionic Roadrunner |
Hi Lisa, I have had my ICd for over 13 years. Actually, I think I will need my fourth one around fall. Your question is difficult to answer. Yes, I do feel secure knowing that if I should get into ventricular fibrillations, my ICD will shock my heart back into a regular rythm. But on the other hand, my ICD does not prevent my heart from having an episode. So there is the fear of the episode, but the security of the device... It is difficult to ask a child not to play hard. The only thing that might slow him down, sadly to say, is if he gets a shock. On the other hand, if he is on beta blockers, he has double protection of the device and the medicine, so his chances of having an episode are rather slim. What type of LQT does he have? I have LQT2 and mine is not exercise induced, but triggered by startles or emotions. I have been a runner for 28 years and have not experienced any problems when I run, although when I used to race, the minutes before the race, my heart would flip flop every which way. The adrenaline pumping in anticipation of the race was causing this problem, but I had not idea I had LQT at the time. If he has LQT1, I believe that this is the one which is exercise induced and he should be careful if he does not want to get a jolt... I think he should follow his doctors advice anyway, although when it comes to a young boy, this is easier said than done, isn't it? Best wishes to him and to you his MAma (It is probably harder on you than on him  | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
If it works properly the ICD is a fairly good backup. Certain sports could however cause electrode displacement, so you need to discuss it with your electrophysiologist | ||
| Bionic Roadrunner |
Dr Kanters, what kind of sports could cause electrode displacement? Someone asked me if swimming (crawl) twice a week an hour at a time could cause any problem with her defibrillator leads, whether it would be erosion or displacement? Swimming is not a problem for her as her doctors do not think she has LQT. Thank you for all the time you spend with us! | ||
| Wondering for Years |
I am 67 years old. My first "fainting spell occurred at age 7, shortly after my mother's death. Had many such during childhood, more during puberty, and off and on during adulthood. Have been misdiagnosed with epilipsy in past. During 40s I started having tachycardia events, and in recent years they have become less frequent, although I tend to black out momentarily at the beginning of one now. I just today heard of Long QT Syndrome and wonder if it may be the problem that has eluded me for many, many years. I have had many stress tests, ECGs, CT Scans, which showed nothing. An EEG taken 20-25 years ago showed an abnormal brain wave when tired, and a holter monitor (about that many years ago) showed the heart slows abnormally during deep sleep. Question: Does this sound like anything related to Long QT Syndrome? Should I talk to a Cardiologist about this possibility? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Ask your cardiologist for a measurement of your QT interval. My first LQTS patient has exactly the same history as you, and was misdiagnosed despite a QT interval of 0.6 sec | ||
| Anuska |
I am just 29 but my story is very similar. I was almost misdiagnosed for epillepsy because of a strange wave during a sleeping EEG, but finally got no medication. My first fainting spell was at 8, my last one, a year ago. I had had several ECGs and stress stests done during childhood with no result. My routine ECG before delivering my baby showed a QTc of 478 but the doctor signed it and said nothing. Fortunately, a year ago another EP found my QT was long and could register torsades de pointes during a stress test. These torsades happened while I was feeling a chest pumping that I always feel some seconds before fainting... and some seconds after waking up again. I am on betablockers now and considering to receive an ICD. It seems not all cardiologists are equally aware about long qt, and some years ago a lot of them would not think about it. During your childhood, the most common one (Romano-Ward) wasn't even discovered, so you could have easily been misdiagnosed. | ||
| Anuska |
As told you in my last post, I am considering the offer of receiving an ICD. I have been in betablockers (atenolol 100 mg per day) for one year. I already had anxiety issues long before being diagnosed because I developed panic attacks and a pathological phobia towards fainting spells. I have been scared of having a fainting spell during years. As they are related to exercise and emotional stress, I find difficult to do certain activities like walking upstairs (I fainted 4 times just walking upstairs!). I have had agoraphobia three times. I am under psychological treatment to help me to cope. Three months ago I felt a slight symptom of tachycardia, equal to those that I feel before fainting... but I did not faint. I belive it was arrythmia because they feel different from other palpitations, like typical anxiety sustained palpitations. But it was only one pump and it is difficult to be sure. My EP suggested an ICD. I am worried that the ICD might increase the previous fear of fainting I already have. I believe anxiety is almost as bad for me as running, so I don't know what to do. Will I change fear of fainting for fear of being shocked? That would be OK. But if fear of being shocked adds to previous fear of fainting, then I don't know what is best for me. Thanks for reading. Anyone in a similar situation? | ||
| Matt |
Obviously each case must be considered individually, and I'm NOT a doctor, but since LQT1 reponds best to beta-blocker treatment and you haven't fainted since treatment (?) I wouldn't consider ICD at the moment. My understanding is this should only generally be considered in LQT1 if faints continued. My son who had 4 faints in 1 year prior to treatment hasn't had any in the past 2+ years despite leading a normal life. | ||
| Howard |
I had a heart attack about 3 years ago when I was 47, and was basically out of it for a week. I pretty much accepted whatever the doctors wanted to treat me with, and among other things, they implanted a combination defribullator/pacemaker. It went off due to neglegent programming soon after and shocked me about 16 times, (luckily I was in the hospital at the time for a bypass surgery), and after lots of confusion and morphine they reset it properly, however this experience basically made me a nervous wreck, and I of course don't trust this device. I needed to see a therapist afterwards, and start taking Lexapro for depression, which helped. Now, about 2 years later, without incident, (and feeling much more sane about the whole thing), out of the blue it shocked me last week...but this time (the doctors) say it was appropriate. I guess I'm happy I had the device, only problem now my head is messed up again with anxiety. If anyone can share the "getting over the anxiety" of not knowing when a shock will come...I would deeply appreciate hearing from you. My email address is: guitargs@dslextreme.com. I'm glad I found this message board. Howard | ||
| JR |
I know this is an older post but I find it interesting that there is a problem with misdiagnosis. I have been misduagnosed with epilepsy for 6 yrs, and continue to have recurrent syncope after pacemaker and multiple medications. My QTc varies greatly but higher number has been 4.73 How common is it for a cardiologist to overlook this? I am wondering if this may be a puzzle piece to fixing my problem. Dr. Kanters what are the stats like for QTc variability- can it be normal one day and long the next??? Is this commonly overlooked??? Is it possible for a small dose of norpace 150mg 2/day to significantly prolong the interval, or is this an underlying issue?? Thanks. | ||
| Bionic_roadrunner Username: Bionic_roadrunner Registered: 07-2006 |
JR, it is not uncommon to be misdiagnosed when having long QT. Many people have been told originally that they had epilepsy or vasovagal syncope... The length of the QT varies with the heart rate and it is easy for a doctor (cardiologist or not)to overlook it on and ECG. I cannot answer your other questions, but since you seem to be still looking for answers, I would suggest you asked for a second opinion. Try to find an electrophysiologist that has experience in Long QT. The SADS foundation (www.sads.org) should be able to give you a physician's name in your area. Good luck and stay well. |