| Author | Message | ||
     Cindy Bonasse |
Does everyone still have the symptoms they had prior to meds and the ICD implant. I am on 200mg Lopressor a day with ICD implant. I still have periods through my day that my hearing seems plugged and I am hot. These were things I experienced prior to diagnoses of Long QT. Anyone else have this problem? | ||
| kerry rudland |
Hi Cindy, I am on beta blockers but do not have an ICD, And yes i do still get some symptoms, i do get the plugged hearing and i do get very hot, although until i read your post nobody had told me that they were symptoms of LQTS, so thank you i now know why i have these symptoms aswell.. Kerry | ||
| Cindy Bonasse |
Kerry, I am not sure that these are symptoms of the LQTS but they are problems that I have dealt with many times over the 3 years prior to being diagnosed. I know that I suffer from a panic disorder now that these are also symptoms of panic attacks. The heat does effect me tremendously though. I am glad to hear that someone else does have these same issues also though since I have felt nuts about it for a long time. Cindy | ||
| Molly Wallin |
Does anyone know how early they can put an ICD in a child, I'm anxious to have it done? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
You can get an ICD just after birth. But only if its indicated. And its not automatically indicated in all Long QT patients. An ICD could also be dangerous, so the benefit had to be grater than the risk. | ||
| Molly Wallin |
When does the advantage outweigh the risk, in a family with a strong history? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
You have always to evaluate it individually, but as thumb rule I would think about an ICD if the patient had experienced a documented cardiac arrest irrespective of being treated with betablockers or not, or if the patients continue to faint despite beta blocker therapy. | ||
| B. Wilson |
How do evaluate the new activity level and the treatment for a child that has had no symptoms and no family history of any symptoms? She was diagnosed after an EKG was done for a unrelated heart murmur. She is 12 years old and is a nationally ranked cross country and track long distance runner and has been runing for three years. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Thats very difficult, and depends of many parameters. How long is her QT interval. What is her genotype etc? If I was sure that the diagnose Long QT syndrome is correct I would treat her with a betablocker. With regard of her running it is difficult and somehoe dependent on her genotype | ||
| kerry |
Hi Dr Jorgen Kanters, I wonder if you could put my mind at rest for me, I have been diagnosed with LQTS with QT interval of 568 which i was told is relatively very long, I also have coronary artey spasms, which my mum died of this time last year at aged only 51, I have had blackouts since being around 15 years old,and im now 26, I have been started on Bisoprolol and told to go get on with my life, i was first told i needed an ICD but then told that the risks outweighed the advantages,??? as you can imagine i am worried, i still have the bumps and jumps in my heart and feel awful pressure ,even on the beta blockers, but still they will not fit an ICD, They say because they havent seen my abnormal heart rythm, they are unwilling to do this, but i wouldnt let them do any EP studies through fear, Doctors have been with me and documented what has happened when my heart goes into a funny rythm, but they havent looked at that and dont take that into consideration, I am worried that the next time may be the last but how can i make them see i am not paranoid i just ant to be sure i dont drop dead,,?? Any advice is greatly appreciated Kerryx | ||
| SONIA DYKES |
HI DR JORDEN KANTERS.MY SON TYRONE HAS ONLY HAD LQT SINCE SEPTEMBER.HE IS ON ANTENALOL.HE IS 2YRS OLD.I HAVE BEEN TOLD THAT HE WILL HAVE TO HAVE EITHIER A PACEMAKER OR DEFIB.HOW LONG DO U THINK WE,LL HAVE TO WAIT.? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is always difficult to decide whether to implant an ICD or not. Since the risk of Long QT syndrome is low when treated with betablockers at our clinic (60 LQT patients) we only implant ICDs if the patient continue to faint on betablocker therapy. An exception is if the patient had experienced a cardiac arrest, in that case we implant an ICD directly. | ||
| Gillian Cook |
I have been on beta blockers (inderal) for LQTS for about 3 yrs. I experienced weight gain and have trouble loosing the weight.(previously I had never been overweight and never dieted). Could this be due to the beta blockers. Is there anything I can do about it. Also, I am always overheated and sweating has become a real problem. Has anyone else experienced these side effects. Any advise or comments would be appreciated. Thnks | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Unfortunately it is a wellknown side effect of betablockers. With regard to your other symptoms like overheating and sweating, you should contact your General Practioner and let him/her check your thyroid gland. | ||
| c.ann mcallister |
there has to be something to this overheating. i know i was having trouble before my arrest so much that i couldnt sleep at nite so therefore i was very tired. i am 48. how old are the others that have posted? i have felt for a long time this is what happened to my potassium cuz the heat from with in is almost unbearable!! | ||
| J Mac |
I have been on beta blocker therapy since January. Prior to this I had funny feeling in head like pressure, although blood pressure was normal. I felt like times I would go into stare or stupor and couldn't respond. Since beta blockers 4 months now, symptoms of fainting are almost gone and those feelings have subsided almost totally. They think faints were only simple faints though, don't know if you can have both LQTS and simple faints, but seems like I did. JM | ||
| cann |
i am glad i am not the only one having a problem with overheating. i thought it was menopause but wasnt convinced. now i know i am not crazy. there has to be something about this or so many would not have the problem. why isnt this being studied?? i have been on effexor but it doesnt work. please advise???? | ||
| Marianne |
I have been on beta blocker therapy since my arrest in January. I have noticed that I seem to be hot alot. More often than I remember before, but no one else with me is hot. I am 46, so I considered it might be "hot-flashes" of menopause as well. BUT, they are not the same as the ones I was having before my arrest. | ||
| Fran Williams |
How about depression as a side affect? Now, I have plenty to be depressed about (Long QT, but test results not back; mother passing away 4 days after my EP study; daughter starting evaluation for Long QT) but I don't feel like doing anything but sitting. It's getting to me. I take only 50 mg of lopressor 2x/day. | ||
| debbie |
Fran I'm on Toprol xl 50 mg aday. That is one of the things that my doctor asks me when I see him if I'm depressed that is one of the effects from my drug.It has not caused me to be depressed. You need to talk to your doctor about this maybe your meds can be changed. But it also could be not the meds just all that you have been through lately. Talk to your doctor about this. | ||
| Lisa Leithauser |
I was diagnosed with LQT when I was 30 and my son had a cardiac event (heart in v-fib)(later HERG marker identified). I am now 40, and after suffering a 4th syncope(4 since the age of 28), I have decided to try atenolol (dr. is also encouraging ICD). I tried 25mg 2xday 2 yrs ago and went off it because of the side effects (lethargy, dizziness, anxiety). My dr. initially prescribed 50mg 2xday. After 10 days I cut the dose in half, and feel half better. I am now in the 6th week of being on this med. Symptoms, especially anxiety, are greater during my menstrual cycle. This drug is horrible, and it is the drug, not my mental state. Are there other beta blockers out there that do not have the anxiety side effects, or are less likely to have the anxiety side effects? I also have bradycardia. My resting heart rate on this drug is around 40bpm down from my normal of 50bpm. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
If I understand you right, you have experienced syncopes despite betablocker treatment. In that case I would strongly suggest implantation of an ICD. All betablockers have lethargy, dizziness, anxiety as possible side effects. Atenolol is said to be one of the better ones, although in my private opinion the brand do not matter much. Your son seems to had a cardiac arrest, do he has an ICD? | ||
| Judi Mac |
Lisa: I was put on Toprol XL in January for syncopes and near faints after being diagnosed and asmyptomatic for years. I continued to have for 3 months fairly regularly many light headed spells even though I started to take med at night. Then it slowly quit. I only had one faint this summer and once recently I woke up in sleep felt like passing out and couldn't move. I did not call doc as he thinks faints are not QT related as monitor for two months I wore did not show anything. You on the other hand had immediate family history so treamtment is probably different. What I am trying to say is in my case it SEEMS like med took a while to get used to. Now it doesn't bother me except I have to take naps and I never EVER had to do that. I am a small person but I have gained about 10 pounds, I seldom have the heart flutters and the palpitations like I did before either. I don't have the energy I had before but is a good trade if it keeps me upright! Good luck. Judi M | ||
| Jmac |
Lisa P.S. Sorry to hear about your son's cardiac event and your problems as well. Do be aware not to jump off beta's quickly without Dr'w watchful eye as they tell me this can cause serious problems even if yur were not ever proned to having cardiac problems. How long did it take for them to identify the HERG for you? Where did you have testing done? Hope you feel better and get straightened out with meds. Judi | ||
| Jmac |
Dr Kanters: I realize every situation and doc are different. Would you suggest ICD for those that have had syncopes despite beta blocker treatments even if event monitors were unable to pick up anything? Just curious. Is that standard protocol if diagnosis is definitely LQT? Jmac | ||
| Lisa Leithauser |
Thanks to everyone for the info on beta blockers. I have never passed out while on beta blockers (6 weeks now), and I have had my first normal stress test in my life. If I can hold out for a few months, it sounds like the anxiety and other symptoms will abate. I will not get an ICD until I pass out while on the beta blocker. I'm willing to take that risk. My son does not have an ICD. He has not had another syncope since his first and only at 2.5 years old, and has been on beta blockers ever since. As for genetic testing, my son was tested in a research study 10 years ago when he had his syncope. We are currently trying to get testing for my other 3 children, two of whom have abnormal stress tests and are on beta blockers (they have never had any syncopes). The lab is Genaissance in New Haven, CT. I have had some issues with them, and working with our insurance company (Cigna), but hopefully it will all work out. Long QT only shows up in our family during stress tests. We also have no history of sudden death running back family history to my grandparents on both sides. If my son had not almost died 10 years ago, we still might not know about this syndrome as my syncopes happen once every 5 years or so starting when I was 28 (I'm 40 now) - way past my days of playing Division 1 college basketball and volleyball. I still play basketball, and have never had a syncope while playing. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
To Jmac: We normally recommend ICD for all LQTS patients who continues to have syncopes despite betablocker treatment. It is a sort of standard protocol in LQTS. Normally we implant it directly after the patient having the first recurrence with syncope, so we dont have the opportunity to put on a event recorder. Furthermore we have in a scientific study shown that LQTS patients have an abnormal tendency for having vasovagal faintings which not are directly related to arrhythmias. Since faintings are known to be a bad prognostic marker in LQTS, we believe that many faintings in LQTS are not directly caused by arrhythmias but still dangerous since the fainting could lead to arrhytmias. This is not generally accepted, but it is generally accepted that faintings in LQTS are dangerous. | ||
| Isik Timur |
Hello Sir, I am a Medical Doctor from Turkey, Istanbul. My father had a myocardial infarction crisis on 1986 and since this date, he has too many ventricular tachycardy attacks. On 1990 and 2003, two by-pass operations has been made; but attacks went on. On May 2005, ICD has implanted. By the way, all investigations were made by our doctors and some grefts are stopped. Now, after implantation of ICD ( St. Jude), he had four tachycardial attacs and ICD worked. But, before ICD, these attacks were being once in a year. Now, it happens often. He is taking beta blocker, aspirine, Cipram ( for his anxiety, depressive and panic pshycological situation) and Omega 3. But, I have read an article about ICD and Omega 3 using and he stopped to take Omega 3 now. He can't use class 3 anthyarrithmic agent because of their advers effects. He has very sensible bodily constitution. We try to use nitrates for vasodilatation, but hypotension and reflex tachycardy is a big problem for him. I have three questions: 1. I have read some articles about proarythmic effect of ICD. Can you give me some information about this? 2. Is it possible a hypersensibility reaction against to ICD? For example to material of ICD? If it is possible, can this reaction loose a few time later? 3. How are the results about ICD in your country? Can we have better prognosis within time and can everything be better? If you help me, I shall be very glad. Thank you in advance. ISIK TIMUR M.D. | ||
| Abahareth |
Hi all i am currently on concor 5 mil i am facing increased weight gain over 1 year i gained 20 kg i think beta blocker has effect inthos | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is discussed whether ICDs have proarrhythmic effects, especially with right ventricular pacing, but the jury is still out. Since you father have VTACh (with hemodynamic consequences) the ICD is essential. Different antiarrhythmics could be tried, and then the patient and the doctor must evaluate whether the adverse effects of the antiarrhythmic is worse than the beneficial effects. The second possibility is to ablate your father. You have to discuss that with your fathers cardiologist. | ||
| kenney |
Does anyone experience pressure in the head and a feeling that I will describe as the brain skipping. It is like you blackout for a split second although you really don't. I don't know if it is the anxiety or the beta blocker. I would be interested to hear others experience. I was diagnosed with LQT2 about a year ago and have an ICD. I take 100 mg of Lopressor a day. | ||
| Bionic Runner |
Funny that you should say that. I have not experienced the pressure in the head, but I have indeed had the feeling of blackout for a split second. It only happens at night when I am ready to go to sleep and not very often. How about you? At the risk of sounding crazy, I have even felt like an electric current going through my brain and also lasting a split second. Just like a zap, no pain, though. It happened a lot when I first started the Metoprolol 50mg a day (same as Lopressor) 2 years ago, but it is happening less and less. Either I am getting used to the medicine or my sanity is coming back  . I have an ICD too, but I do not think it has anything to do with it. Not in my case anyway. It is normal to feel anxious, but think of the ICD as you security blanket. You are much safer now than before. Stay well! | ||
| Jmac |
I also had pressure when first symptoms appeared a couple of years ago, actually thought maybe I was having stroke or high blood pressure. Since heard that many many others have had same thing. I have had many "near faints" and partially blacked out, hear voices but cannot respond. Betas seemed to help but not completely so they put ICD this year and feel much safer than before. They also think I have LQT 2, noises startle me. I do have ringing in ears/head never had before, but now kind of used to it until it's realy quiet I notice it. Jmac | ||
| kenney |
Thanks for the quick responses. I have been taking the beta blocker for 8 months but the pressure and "not right feeling" in my head has seemed to get worse. My doctor told me today to just try taking 50 mg at night and not in the morning and see if that helps. I know the ICD is a security blanket, but I just don't want to faint or it have to work. The feeling in my head just contribute to the anxiety because I feel like I could just easily pass out. | ||
| kkenney |
I should add that I generally only experience the pressure in the morning around 10ish about an hour after I take the beta blocker. I don't get it at night even though I also take the beta blocker with dinner. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is not a normal adverse effect of betablockers, but everything is possible. Discuss it with the doctor and maybe reduce the betablocker | ||
| Tom Lamkin, Jr. |
After 25 years of mis-diagnosis I was diagnosed with Long QT Syndrome (more specifically Jervell and Neilsen-Lange Syndrome) in Nov, 2005. An ICD was implanted and I began taking 100 mg of Atenolol a day. The implant didn't bother me as I treated it much the same as I do my hearing aids and glasses. I noticed immediately that I was getting very fatigued. I also noticed that my chest always felt heavy and I felt winded much like I used to after my daily jogs. When driving, I would feel as though I was getting tunnel vision and the road ahead of me was getting very narrow. I've had to stop the car and let my wife drive on several occasions. I've experienced the dizziness mentioned in other responses. I also experience the split-second blackouts at bedtime as mentioned earlier by Kenney. I get very anxious and panic stricken at bed-time and haven't slept very soundly since I've been on the medicine. Has anyone experienced this feeling while driving? I've also noticed that since being on this medicine, I've had difficulty with intimacy, etc....if you know what I mean? Anyone else have this issue? I'm just wondering if it's common for the beta-blockers to have such an adverse affect on our lives? If this is as good as it get's, I could see why many people get depressed. Up until I was diagnosed, I was the strongest(mentally), most active, confident healthy 42 yr old I knew. I've always gone 18 hours a day, 7 days a week. Now, i can't even get through an 8 hour day at work yet. My family has been able to rely on me for the last 10 years to provide for and protect them. I don't feel very confident in my ability to provide for them these days. I've done the research and fully understand the benefits of the beta-blocker, however you'd think with the numerous downsides of the beta-blockers there would be more alternatives available. For me it's about quality of life. I'm almost at the point of advising my cardiologist that I'm going to gradually take myself off the Atenolol and take my chances on getting shocked by the ICD.(I have been shocked previously due to surgeon getting the wires backwards.) The shock isn't very pleasant, but in my opinion an occasional shock is better than feeling lousy 100% of the time and feeling like a 90 yr old invalid while you're only 42. Any thoughts or guidance would be much appreciated. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Tiredness are a known adverse effect of betablockers. In a few LQTS we have implanted an ICD and stopped betablockers due to the same symptoms. Since you have the ICD allready, your suggestion is a possibility. Allthough an ICD is not 100% bullet proof, the risk seems acceptable vtaking your problems in account. | ||
| Bionic Roadrunner |
Tom, why not try a lower dosage of betablocker (may be 50mg instead of 100mg)before quitting completely. This lower dosage might still protect you from being shocked. I have had an ICD for 15 years and only started taking betablockers 2 years ago. I do fine on 50mg of Toprol XL. My heart was very slow (40bpm lower at night) and the doctor was hesitant to put me on medicine. But I started having episodes and getting shocked so that's why I went on the betablockers. You are not crazy, all the symptoms you describe are side effects of beta blockers, and they are worst for some than for others. Check with your doctor and good luck. | ||
| Jmac |
Tom: I also take 50 mg of Toprol a day. It knocked me on my ----too. I also went 24 and 7, even worked 2 jobs at once while running a third one I owned also, then LQT and betas and couldn't go all day without nap which didn't fit into my lifestyle of 3 grandkids and work! This is a little late advice since you already have your ICD, but maybe when they replace it you could be thinking about what they did for me. They put an extra lead in for pacing the upper chamber only. It keeps me paced at 60 whereas on betas I was in 40's and while some can tolerate that, I can't. I still take betas but don't need the nap anymore! In meantime, would ask about lower dose or another type maybe? Good luck, Jmac | ||
| Tom Lamkin, Jr |
Thank you all for your responses. In my previous explanation, I tried to keep it to a minimum. Here's the additional details. Upon initial diagnosis, my cardiologist advised the surgeon to implant a unit that would have pacing capabilities(dual chamber) in the event that I needed it later. He thoroughly explained the procedure to me and my wife, who happens to be an RN. He said there would be two leads implanted, one to the upper for possible future pacing needs, and one to the lower for the defibulator shock in the event that I needed it. 3 weeks after the first surgery, I still felt awful while taking 100mg/day of Atenolol. Keep in mind my resting heart rate was usually in the lower 50's prior to starting the medication. The Atenolol sent it down to the mid 30's. My cardiologist allowed me to reduce it to 50 mg/day. Two weeks later, I still felt lousy. The cardiologist then advised that we'd call the defibulator/pacemaker rep in and program the unit to begin pacing. At that point, we realized that the surgeon hadn't followed the cardiologists orders. He'd implanted only one lead, and a unit with no pacing capabilities during the first surgery. I immediately had a second surgery and began pacing at 65 bpm while taking 50mg/day of Atenolol. A couple of weeks later, after the lifting restriction had passed, I recieved the improper shock while crossing my arms. We later realized the surgeon had gotten the wiring backwards and the unit short-circuited. I had a third surgery to correct that mistake. We're currently in ligation procedings due to the surgeons ineptness. More recently I had an event in which I ended up back in the hospital, and it was determined that I have A-Fib in addition to V-Tach, so they increased the medication back up to 100mg to address that latest concern. I go back to see the cardiologist next week, but will probably be switching to a new cardiologist after that due to the surgeon we're in ligation with, being in my cardiologists practice. I've also found out that one of the top five cardiac units in the U.S. is only a 45 minute drive away. I've been advised by my family doctor that I should see a electrophysiologist there? Thanks again for the input. | ||
| Jmac |
I agree, an electrophysiologist which is a cardiologist who specializes in abnormal heart rhythms,(electrical part of the heart) is who you need to be seeing for LQT problems. I am so sorry for all you have gone through, it's bad enough with just dealing with LQT let alone everything else. I tried to get my EP to let me off of betas as I still get tired, just not as much or as often and he said absolutely not. He explained the urgency of this being life threatening even with ICD as I have had some documented VT in past while on betas which thankfully self terminated. I live in Louisiana in US but traveled to NY to see expert in LQT and let them do my surgery after confirming LQT. I was very reluctant to switch but after all, it's your life, your heart. Keep chatting! Jmac | ||
| Tom Lamkin, Jr |
Has anyone had problems with vision from the beta-blocker? I've recently noticed that I'm having difficulty focusing while reading items up close. I've always been near-sighted and worn glasses/contacts without any difficulty reading up close until recently. If it's just part of getting older I can live with that. I'm just curious if the medicine is causing this? |