| Author | Message | ||
     Katherine Moehler Username: Katherine_moehler Registered: 03-2008 |
The beta blocker that I was on reduced my heart rate to the thirties. Consequently, my Dr. reduced my daily amount to 10mg per day. I'm not sure how much "protection" that gives me, but I'm over 40 and playing competitive tennis. | ||
| Susannah Evans |
Can anyone advise of side-effects experienced using Nadolol (and other beta-blockers)? Particularly any experience of hair-loss. Thanks | ||
| Karen Barnacle |
Hi, I've taken three different beta blockers in the past 18 months. The side effects I've experienced include: fatigue, cold hands, feet & nose (!), nightmares and nadolol dropped my pulse dangerously low. I've never experienced hair loss.Back on bisoprolol until I see my cardiologist on monday. | ||
| Susannah Evans |
Good to hear from you Karen. I've also heard from someone who experienced hair-loss with Nadolol and went onto Atenolol without any problems. I'm looking into this. | ||
| Allison |
My 7 week old baby has Long QT and he has been on Nadolol since he was diagnosed at 4 weeks. Initially his hands, feet and nose were very cold but now they seem warmer. Is it possible for the side effects of Nadolol to disappear as his body becomes more accustomed to the drug? | ||
| Stephanie |
Hi Allison my 10 year old has been taking Nadolol for the last 5 weeks, since diagnosis. He used to get cold hands and feet, along with other symptoms....I'm pleased to say, he's settled down now, and no longer gets cold hands and feet. Glad your baby was diagnosed, and is doing well. Take care Stephanie | ||
| Karen Barnacle |
Hi, without any prompting my hairdresser told me last week that my hair is much finer and drier than it used to be. I have very thick hair so the loss hasn't been noticeable. I also have less body hair and that's finer too. I wonder whether its due to a general reduction in circulation - hair follicles need blood right? I'm still on bisoprolol, but am having an ICD in a couple of weeks and the cardiologist will then increase my betablockers. I can't tolerate the dose I need because of the drop in heart rate - to 30bpm - not much fun! But I was thinking how incredible it is that we have the drugs and the technology to keep us around - especially the children. | ||
| Susannah Evans |
Advised that hair-thinning is due to a b-blocker induced phase shift in the hair growth cycle and not due to blood supply. Very unlikely that all hair will fall out completely. Also reversible by stopping the beta-blocker but obviously not a realistic option. Advised to give it 3 months to determine to what level of thinning the hair will settle down to. | ||
| Heather Creasey |
I'm on Nadolol and the only symptoms that I have noticed are fatigue, cold hands and feet once in awhile. However, no hair loss. I have been on Nadolol for about 4 months, and so far so good. | ||
| Karen Barnacle |
Thanks for the information about hair loss. I'm due to increase my beta blocker dose in the next month when I see my cardiologist. So I won't know what my hair is going to be like for a while. have to say feel great on bisoprolol at the moment - no other side effects at all. Also, had my ICD implanted 12 days ago and feel wonderful. I think its because I'm being paced by the ICD up to 60bpm - what a difference! | ||
| Susannah Evans |
Now also using slow release bisoprolol (same as propanolol I think) and things appear to have settled down. No side effects so far. Here's hoping!! Karen, hair loss is apparently very rare. | ||
| mtvgn |
is there a site or something with an overview of different types of common used betablocker types? I've read nadolol, bisoprolol, atenolol and propanolol. Still the one I've got is unlisted. It's called metoprololsuccinate, probably some bisoprolol-alike? | ||
| Jon N. Mettler |
Here is a detailed description of Metoprolol succinate: http://www.nursespdr.com/members/database/ndrhtml/metoprololsuccinate.html I hope this helps. | ||
| mtvgn |
Thanx, although I don't understand everything (English is not my mother language) it at least seems to be a possible drug to avoid a syncope. Probably the treatment of patients in Europe differs from those in the United States. | ||
| Susannah Evans |
Recent comment from a group of UK doctors regarding a son of a relative: " we are not convinced Nadolol is the best treatment for children & certainly NOT appropriate in this case. We would advise Bisprolol.." I have 1 child on Nadolol and 2 on Bedranol. (see earlier postings) Anyone have any thoughts as this is getting confusing? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Ask 10 doctors and you will get 10 different answers. This is always discussed when LQT doctors meet. I doubt there is important different with most common betablockers. In France and italy nadolol is commonly used, you cant get it in scandinavia so we use other betablockers like propanolol or metropolol. The important thing is that your kid take some kinds of betablocker and it would be convenient if it is a brand of which your doctor is used to. Jørgen Kanters | ||
| heather |
I started on bisoprolol two yrs ago,and have felt lousy since.I have put on 3 stone in weight,feel exhausted all the time,and have really bad mood swings.Having read the message board,i now think all these are linked to my medication.I also suffer from constantly cold feet and nose! | ||
| kerry rudland |
I was started on Metoprolol and had awful nightmares, then they recently put me onto Bisoprolol and already i have put on over a half of stone in 5 months but the nightmares have lessened, I have another complex condition (coronary artery spasms) so i already suffer the cold hands and feet, but so far i am ok with the bisoprolol, the one thing that did worry me is, i have had my dose raised 4 times already since August and when i asked what would happen when i reach the highest dose? I was told that it shouldnt be a problem as once i get to a good dose then i will be fine,, Yet my friend in America was told that she has been put on a reasonably low type of beta blocker so as they wear off they can push up the dose then up and up til they can put her on a higher potency tablet so she never runs out of options should they start to wear off, This worries me as i am already supposedly on a high potency tablet and already had to have it raised 4 times, I am only 26 , what happens when we reach the limit??? If anybody has any other ideas abou this i would be very happy to hear them or if their doctors have told them anything like this.. kerryxx | ||
| Cliff Evans |
My 7 year old son was diagnosed with LQT earlier this year after fainting 4 times the previous year. He weighs 27Kg and is on 20mg of Nadolol per day. He has been fine with that although sometimes mentions that he occasionally goes 'fizzy' (as he calls it) and everything seems to stop for a few seconds. Does this mean that the Nadolol is or is not working, and how concerned should we be about this? Many thanks | ||
| Danielle CAL |
I've had Lqt years been on Nadolol for since I was 6years old,..I never heard of this site.. I've had cold hand forever. Thought it was just bad circulation. I'm trying to figure out if the moodyness is from the pills (been moody all my life) and the short term memory prob. and the Learning disablity.. but hey I'm alive. :D Diffibulator and all. I have thick hair ..no real prob with hair loss.. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
The cold hand is a weelknown side effect for betablockers including nadolol | ||
| Susannah |
My daughter is on daily 80mg slow release bedranol. As a result during exercise her heart-rate rarely goes above 90 bpm. Are there likely to be any long term side effects from sometimes not having the heart work harder ? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Beside the benefit for Long QT syndrome patients, there is some evidence that the heart beats wear the heart. People with slow heart rates seem to live longer than people with fast heart rates. The Galapagos turtle becomes 150-200 years with a heart rate of 20, whereas the mouse with a heart rate only becomes 1-2 years. The answer is possibly yes, but is is a beneficial effect | ||
| Dr. Anton Safer |
The last message regarding the heart rate of mouse should read some 500 beats/minute I would suppose. As I dont know all beta blocker drug substances, I cannot comment on bedranol nor on the dose of 80 mg. But certainly not all beta-blockers are more or less equal in their efficacy, side effects etc. My best experiences are with bisoprolol considering the efficay/side effect relationship. Anyway, there are always some patients not tolerating some specific drugs. Furthermore, a careful adjustment of drug dosage to the individual patient physiology (body reaction) should be performed. Since this is laborious, and not well paid (nor honored by most patients for the inconvenience) it is rarely done. In case of Susan´s daughter I would highly recommend to perform a stress EKG or Holter-EKG, and adjust the betablocker dose so that the maximum workload allows at least a heart rate of 130. This would mean to lower the betablocker dose (or possibly change the drug ?). Then, an EPS should be done, in order to be sure that there is still full protection against SCD risk. But in terms of cost this very often means that this procedure is not covered by the health insurances. Though it would be cost and life saving on the long term. Betablockers are the recommended treatment in LQTS patients, which is concluded beneficial in terme of lowering risk of events (syncopes, reuscitation) and specifically sudden cardiac death. Anyway, this does not mean that no such events happen. Amiodarone is a class III antiarrhythmic agent, which has proven to be quite safe and efficient in reducing death rate. But as it causes (possibly even larger) QT prolongation itself, I am puzzled about this recommendation, which is said not to enhance risk of sudden cardiac death. This contradicts to the (still rare) observations that Amiodarone itself can cause verntricular tachycardia and even Torsades de Pointe arrhythmia. Which group (or subgroup) of LQTS patients does have no benefit, or even increased risk? This question is very relevant, if we consider the sideeffects of longterm Amiodarone treatment (skin, eye, lung problems). Even if Betablockers may have some sideeffects, the severe sideeffects that may be caused by longterm treatment by Amio seem much more frequent and relevantly impairing for patient quality of life. Has anybody in this forum proprietary experience with this drug? Some doctors recommend implantation of ICDs as the ultima ratio for life saving treatment. But you should be careful not to do this in early life stages, because we know meanwhile that the lifecycle of the ICDs is rarely longer than 5-6 years. In replacing the device, the electrodes are commonly not removed from inside the heart to avoid inreased patient risk. The new electrodes are placed aside the old ones. There is not much experience how often we can repeat this procedure in such way, but I would not expect that it works more than twice (life expectancy 15 years = 3 ICD devices *5 years each). And then ??? | ||
| Susannah |
On one hand it is thought potentially beneficial to be low and on the other a strong recommendation to increase it. School PE teachers teach that the heart rate has to reach 150bpm to "do anything" beneficial hence my initial posting. Any further advice ? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Dear dr. Safer Thanks for the correction of the mouse pulse. I have some comments to your posing. I dont believe there is any indication for a electrophysiologic study in Long QT Syndrome. LQTS patients are not more inducible than healthy subject, and according to the International Guidelines (Priori et al. European Heart Journal (2001) 22, 1374–1450) EPS are not useful. Amiodarone is a very interesting drug, On one hand it increases the QT interval and has a potential for inducing torsades although much lower than other antiarrhythmic drugs. I have seen several patients, where amiodarone mistakenly was used to treat torsades, and it actually works. Furthermore Im aware of an infant in Pakistan initially treated by an ICD giving rise to multiple shocks. The patients demanded the ICD removed and the infant was put on amiodarone and had remained free for symptoms since. The general belief is still that amiodarone is contraindicated in LQTS, but I agree that the last word in this case is not said, and it may be changed in the future. We use ICD implantation in our center only for patients with previous cardiac arrest or syncopes during betablocker treatment. | ||
| Linda Savage |
Is anyone aware whether beta-blockers can cause discolouration of the teeth in children ? | ||
| Gina Garan |
Dear Dr. Safer and everyone, Enjoying your posts. About replacing the ICD unit... the leads are not replaced when the unit is swapped out, unless they are broken or damaged somehow, and usually they are fine. So a person receives a new box, but the existing leads are connected to it. It's not like new lead(s) are being added to your vein(s) every 5 years. That would be worrisome! BTW, laser sheath surgery can be done at some places to remove "old" leads, should it ever be necessary. The guided laser cuts the scar tissue adhering the lead to your vein and the lead is slipped out (not yanked out, thank goodness). So, in the future, as middle aged people and younger people grow older with their ICDs, perhaps they will keep their lead(s) all their life, or have this laser sheath procedure to remove their old leads when that is advisable. | ||
| Gina Garan |
Hi Dr. Kantars, I notice you wrote "We use ICD implantation in our center only for patients with previous cardiac arrest or syncopes during betablocker treatment" In my experience, this is too restrictive and is probably based on financial reasons, not medical reasons, and it is changing. Since by far most people do not survive a sudden cardiac death event, and for many people with CPVT the first (and only) "symptom" of their condition is SCD, more centers and insurance companies will implant ICDs and cover them for persons with CPVT diagnosis and first degree relatives with SCD, which seems totally appropriate and life saving to me! You simply cannot tell people they must survive an SCD when perhaps 5 to 10 percent to slightly better in some places of the these patients will survive a sudden cardiac death, which for many of them is their first (and fatal) indication of their arrythmia. So they are not on beta blockers, they are not fainting ever, but their first event might be their last. This is why people are forced to doctor shop, to find someone who is interested in saving their life, and fortunately, there are many, many, many providers who will help them. Still it means that persons less able to navigate the health care system are receiving less care. | ||
| Susannah |
Is it possible to move the above ICD related postings to their own topic as the original 'Nadolol Side Effects' topic is getting lost here? Thanks | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I have answered the ICD letter in a new tread please refer to that. | ||
| Robert Biddle |
I take amiodarone, betaloc, quinnapril, spironalactone and losec, with cartia (asprin). I get cold arms and across the back, sometimes around the teats. Is there any food/resources/herbs I can take to reduce the toxicity of the drugs with out affecting their good points. Would appreciate a reply please. | ||
| Robert Biddle |
Oops I forgot, I am in New Zealand and it is friday 24/09/04 3.56 pm. I have arrythmia which is controlled by Amiodarone. Would love some advice/help so I can take my wife out, I am too fatigued to do that and she has been my doctor, nurse, sweetheart and friend for over a year when I first contracted arrythmia, I had my first heart attack in 1996 and returned to work till I got sick in 2002 December 23, (two days b4 xmas)We have been married for 37 years and have georgeous children and grandchildren. We have tried a few times, but I get tired to quick and I owe my lady big time, so I would really appreciate any wisdom/help/advice you have. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I would advice you to contact your prescribing doctor to get more information. Since you get amiodarone it is unlikely you have Long QT syndrome. Without knowing your medical history in detail it is impossible to give you a specific advice | ||
| Cliff |
My 8 year old symptomatic son has been taking Nadolol for two years now without problem and no further faints. However, recently noticed that he sometimes has difficulty breathing when at rest. Seems okay when exercising. Is this a side-effect of the beta-blocker and if so should we follow this up with our specialist ? Thanks | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Betablockers can cause asthma. I would suggest that you discuss it with your specialist | ||
| Colleen Carew |
I was wondering if any could answer afew questions for me. My 4 yr old daughter has been on Nadolol for about 3 months now. We have noticed a drastic change in her behaviour, whining, complaining, very clingy. Also she has been complaining a lot about joint pain, for example her kness, ankles, hips, something always seems to be hurting. We have a follow up appt with her cardiologist in a few weeks, So we will learn all we need to know then. I just wanted to know if anybody else has seen any symptoms that are similar. | ||
| Bionic Roadrunner |
This is not a medical advice, just a mother's advice: do not wait for a few weeks to get your little girl checked. I have no idea if her symptoms are related to the Nadolol, but since she is not behaving normally and has pain, please, get her checked very soon by her cardiologist or pediatrician. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Its not a characteristic adverse reaction, but humans are different. You better discuss your daughter with the prescribing doctor | ||
| Jan Marie |
I have read most of the posts for this site and am very thankful to have found it. My 15 year old daughter was diagnosed with dilated cardiomyopatyhy with 35 ejection fraction which later has mostly resolved, but now has a clinical diagnosis of CPVT. Her arrhythmias were not controlled satisfactorily with any beta blocker even Nadalol until we hopitalized her at he physician's suggestion and tried Mexiletine. this has worked well for her on treadmill stress tests with not as much polymorphic or biventricular tachycardia as before which for now is keeping her from getting a defibrillator although we have an AED at home and school. My younger sons ages 8 and 10 were screened and it appears my 10 year old has suspected CPVT also. My 10 year old has bigeminy oon treadmill stress test at 130 bpm and it disappears around 190 and is reproducible. We are monitoring him yearly at present with holter monitor ekg and treadmill stress test. At present, he is not restricted from sports or on medication. At first, we were told my daughter's DCM was probably from a myocarditis and her arrhthmias a result of the DCM, but we later were given a clinical diagnosis of CPVT and it appears it is genetic with my 10 year old also having arrhythmia. It is devastating. Are there any similar situations out there with anyone? We are currently undergoing genetic testing for the two children with arrhythmia for long qt syndrome, RyR2 receptor for CPVT. Is there a genetic link between DCM and CPVT or does the undiagnosed arrhythmia cause the DCM? Any advice would be appreciated. Jan Marie | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is a question a little bit out of my expertise. As far as I know I havent notice a link between Catecholamine sensitive Polymorph VT and dilated cardiomyopathy. Whats the reason you are examining LQT genes. Did any have Long QT? | ||
| Jan Marie |
Dear Dr. Kanters, Apparently, our three children have borderline prolonged qt intervals. When corrected, they are considered normal, however, due to the connection with a possible inherited ion channelopathy and CPVT our physicians recommended screening for Long QT. Also it states in their medical records regarding holter monitor results that there is a primarily wide QRS consistent with frequent PVCs. We were told to adhere to the drugs list to avoid by people who have Long QT syndrome. I appreciate your taking the time to anser the questions. We are attending the HRS meeting in May 4-7 in New Orleans to futher educate ourselves about the above. We are seeking any information we can find to diagnose and find the appropriate therapy. I am continuing to hope that by sharing our story someone will find a connection or have had a similar patient. Thank you. JM | ||
| BionicRoadrunner |
I do not have any medical degree, but I have read a bit about CPVT and because I have LQTS, I believe that in both cases your children should restrain from strenuous physical activity until you know for sure what their problem is. Here is an article about the general guidelines for practicing sports with different heart problems. http://www.medscape.com/viewarticle/480548?src=mp My very best wishes to your children. PS I am not sure that the link will work but you can get it by registering with Medscape.com and plugging in "New guidelines for sports participation in genetic cardiovascular diseases" | ||
| Jan Marie |
Bionic Roadrunner, Thank you foryour response. At present, my daughter who was a competetive swimmer and ballet dancer doesn't even participate in PE class. She has gone from a happy athletic 11 year old girl to an uncertain teen living with risk and not sure what to do with herself. We are guiding her, but it is difficult. She is a straight A student. Her Atenelol and Mexiletine side effects do make her irritable and fatigued every day. The beta blocker and giving up physical activity has caused her to gain weight which 15 year olds are very sensitive about. She is very frustrated. She walks on the treadmill every day, but it is just a side effect she has to live with. It is so hard for a teen to deal with this. My ten year old plays football, soccer, and little league baseball. He runs a seven and a half minute mile. We have seen what it has done to our daughter to give up sports and have been hoping he will not have to. Our EP dr. will reevaluate him in June and until that time we are on the sidelines with the AED. He is still at an age where the training is not too intense, but I realize it is a consideration for the future. My husband is an adult cardiologist, but knows little about the pediatric treatment. He does interventions and even puts in ICDs, but when it is your own child -- you can't even think about it some days... We deal with it by educating the community about SCD and have donated 6 defibrillators this past year to schools and set up training for the staff. Any one with teens on beta blockers and dealing with side effects with any advice?? | ||
| Bionic Roadrunner |
Hello Jan Marie, I know it is very difficult for children to deal with this threat. There is a very inspiring story about a young girl with LQT who has found another outlet than sport. It is on page 5 of the last SADS news letter. Here is the link. If it does not work go to the SADS site and research the winter of 2005 newsletter. http://www.sads.org/SADS_Winter_05%20NewsltrFNL.pdf You may want to contact SADS at wwww.sads.org to see if your daughter could talk or email to that young girl. To know that she is not alone could really help her. Teens need to talk to their peers to deal with their problems. Again good luck and my best wishes. | ||
| veronica |
I started taking troprol XL 25 mg(metropolol) in the USA for two years and felt no side effects. came to france and the doctor at the beginning didnt gave the equivalent to toprol because she said the use of metropolol was still very much discussed in france, so she gave me propanolol, and i felt horrible(extremely fatigated, cold hands, tired, horrible) finally she change me to metropolol but not the long realease caplets, so i take 25 mg twice a day. the fatigue went away right away but i get extremely cold hands..i know is a normal side effect, but is it ok or it means my circulation is very bad, can it cause something worse? when i took the toprol XL in the US i never felt that. thanks for your comments on this | ||
| jmac |
I too take Toprol XL and experience some fatigue. I was always energetic and busy busy. Still busy lifestyle but must nap everyday, never before. No cold hands or feet although I am cold natured year round before Toprol. I am still having few faints although less frequent. They will put ICD in 3 weeks. | ||
| debbie |
I take toprol xl also 25mg once a day I'm always tired also and my hands and feet are also cold. I've been on this for over a year. | ||
| Robin Mattingly |
Hello. I am a 52 year old female. Have been taking Nadalol for about 15 years for a condition called PAT. Have since learned that my problem is probably caused by low magnesium. Does anyone know a safe way to get off Nadalol? Thanks! Robin | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It depends what you mean by a safe way. I guess that you mean paroxystic atrial tachycardia with PAT. | ||
| elsie |
I have been on bisoprolol for 9 months. Hair loss started about 3 months after I started medication. My doctor changed bisoprolol to a water pill to see if that helps hair loss. How long should I wait to see an improvement in hair loss. It's very depressing. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Maybe it is not the betablocker which are causing the hairloss? | ||
| cape bretoner |
I've been taking 100mg of metropolol a day for 5 years now. Are there any long term effects from this medication. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Most adverse effects of betablockers is not related to long term use. | ||
| Vishnu |
Iam a 15 year old boy from India and am taking Metoprolol Succinate XL 25 mg twice daily for the past 10 days for a suspected arrythmia. Iam feeling fatigued and sometimes breathless. However my nose and lungs are clear. Iam not a known asthmatic. The doctors advised me to use the betablocker for another couple of months before undertaking a thread mill test to understand the reason for arrythmia which lead to a flash pulmonary oedema. Is getting fatigued a common phenomenon - will it have any long term implications | ||
| Jmac |
I take 50 mg Toprol XL which is metoprolol. It made me extremely tired for months. It did get better or I just adjusted to it but never was back to same again. I now have ICD and pacemaker which they set at HR at 60 so I feel like old self once again. The medication slows heartrate, zaps your adrenalin rushes I guess --that is the way my doc explained it to me. Always ask your doc when in doubt. Just my opinion. Good luck! Jmac | ||
| Rene |
Dear Dr. Jorgen I was diagnosed with Diabetes about 5 years ago. I went to this Nurse Practitioner for treatment and he diagnosed me with High Blood Pressure. He put me on Metropolo, Candestartan, Avandia and Glucovance. When I started these medications a year ago I told the Nurse Practitioner that my head hurt, and I felt tightening of my chest. He said this was normal. I had never experienced this until I started taking this medication. I have gone to different physicians telling them what I feel and they tell me that it's not the pills and that its part of the diabetes. I feel that I have been misdiagnosed for hypertension. The only test the Nurse Practitioner did on me was a EEG and EKG, and took my blood pressure when I went for my check up. Is this the way you diagnose hypertension. If I were misdiagnosed would the medication harm my heart. I would appreciate any information you could give me. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I will suggest that you consult your doctor to discuss the case | ||
| Matt |
Since starting betas 2 years ago my 11 year old daughter (LQT1) has experienced increased hair-loss. Since starting a daily Vitamin B Complex tablet two weeks ago things appear to have improved! Would this seem logical to you ? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I havent heard of that before. | ||
| rika |
My son 7 y old stared Nadalol 7 months ago. 2-3 weeks after change from Propanalol to Nadalol his stuttering got worse and despite speech therapy got even worse. A side-effect is slurred speech. Do you think Nadalol can have a influence on his stuttering? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I have never heard about a relationship between betablocker therapy and stuttering | ||
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| amy kennedy |
my son was diagnosed as borderline lqts last week (he is 9) and had 1 fainting episode while playing basketball. the doctor prescribed nadolol for - basically the rest of his life, took him off all contact sports, competitive sports... he said his "number" was .48. i am really new to all this, and am very nervous about starting this drug... or any other for the rest of his life. does nadolol have any particular adverse reactions with other meds? for instance, if he develops a cough or cold, what can he take? He loves going to our local amusement park and riding the roller coasters... it is his favorite thing every summer... is this out of the picture? does the nadolol offer protection that should make riding a roller coaster fairly safe? he has ridden them for years without incident. And what about caffeine? we are cutting way back, but wow... so many big changes so fast... it floored him when the doctor told him he couldnt play football or hockey. he told me "mom, if the kids find out i cant run at top speed anymore they will make fun of me." | ||
| Matt |
amy, we've been here too from 3 years ago. We do let our 9 year old son continue football and sports but we perhaps don't encourage as we would have done. He lives a normal life except that we would never let him swim without us being there. The advice we have, which I totally agree with, is to also consider a childs quality of life in the risk equation. Provided my son is well treated with beta-blockers, I believe he is at no greater risk now than for any other child. I have let my son go on roller-coasters and we have built confidence over time. Obviously I am always fearful - it is the parents who suffer more. Hope that helps. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
This is a classical question, which nearly all my patients are giving me. Unfortunately there is no definite yes or no. The mortality is low in treated LQTS patients, but unfortunately not zero. Betablockers reduces the risk of physical activity to a low level. There is no studies or evidence how low the risk is. Therefore due to obvious legal resasons, doctor are following the international guidelines which advice against competive sports. Restriction of childrens lifestyle could also be disasterous. The decision can only be made by the parents and the affected child, with the advice of the doctor. It is a balance of how much risk you are willing to take, to ensure a happy normal childhood. The risk is indvidual and it is not zero but in most cases it is small. | ||
| Matt |
Is it likely to be not zero due to particular high risk patients (ie. very high QTc) and/or probably the fact the prescribed beta-blocker had not been taken ? | ||
| amy kennedy |
Thank you for your supportive words... today was his second day on nadolol... yesterday the nurse practioner said he was "borderline not confirmed" and that he basically had no restrictions other than dont swim alone... she said as a third grader, most of their activities are non threatening, and he has the added coverage of the beta blocker. she said as he gets older, the implications of training for a sport would become a potential hazard, and they would advise against contact and competitive sports. I cant tell you how much it has helped to be able to see the other stories. as a new diagnosis for my son, i am waking up at 2am and am totally nervous... not wanting to compromise his quality of life and not wanting to endanger it either. It is a very lonely place... but this site offers hope. thank you so much. | ||
| Bionic Roadrunner |
Amy, fortunately, your son is young enough so that you can help him develop other interests than sports. In the american culture, I believe much too much emphasis is put on sports, making children as young as 3 or 4 years old feel that they must play a sport and often in a competitive setting with organized teams. There are many children out there that do not play sports, either because they are not very athletic by nature, are not interested or like your son are medically restricted. Yet I do not think that their life has to be ruined because of it. If there is life beyond LQTS, why can't there be life beyond competitive sports? There are many great people out there who live very happily and yet seldom kick, hit or throw a ball...  | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
To Matt. Much of the risk is related to high risk patients, but not all. Sudden death id unfortunately easy to evaluate, life quality is not easy. The balance is difficult. If you save one life each time you let two kids abstain from sport the decision is easy, but what is the price you are willing to pay. If you forbid cars, there would not be any car accidents. | ||
| wgrimes |
what is the very latest on hair loss and NADOLOL / CORGARD? we can never find this listed as a possible side effect, although it seems to be a topic here. secondly, are there other (better) sites that list and discuss the connection between the two? every site i have looked at, has the same "cookie cutter" side effects list, straight from the manufacturer, i suppose. in a advance thanks. | ||
| Bionic Roadrunner |
Try this site: http://www.webmd.com/content/article/110/109705.htm You could also call the drug manufacturer or email them to see what they say. | ||
| Matt |
We found with Nadolol that after nearly a year this 'settled down' to not being as big a problem. Seems that after initially causing a problem the impact reduced. Hopefully this will stay the case. Our contact with the drug companies was, I'm afraid, somewhat of a waste of time. |