I am a brand new member of the community and was hoping to get some feedback from current members. I hope this is the appropriate location for this post!? I have been told by my doctor that I most likely have LQTS. This was not brought on by any "event" but as part of a pre-employment health screening. I have not yet received the results for genetic testing so I do not know for sure. But apparently, my QT is of concern. One of my main concerns here is the restrictions put on physical activity. I have always been extremely active. This is an issue for me in my personal and work life. My doctor has told me that I can still exercise but not to the intensity I used to. Basically, he wants me to never exceed 80% of my maximum heart rate (around 140). Does anyone have experience with staying active and "pushing" themselves with LQTS? How does this change if you are on Beta Blockers? Thanks!
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LQTS and Exercise
- By ChristopherP
- Posted August 16, 2009 at 9:50 am · 7 replies
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- By heartfelt1
- Posted August 17, 2009 at 6:36 pm
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Our family has been diagnosed with this also through a routine physical on one member. This led to genetic testing for all family members. LQT2 is our genotype and have been told by a world-known specialist that exercise restrictions are unique to each individual....depending on genotype (LQT 1, 2, 3, etc), sex, Qt interval and age, to name a few. Our mutation is such that some members of the fam are being treating with beta blockers but no one has exercise restrictions, including competitive sports. There is lots of new information coming out about these mutations and the exact location on the gene and what it means for treatment. If your result comes back, it is very important, IMO, to ask the doctor where your location is on the gene and how that influences his/her treatment decision. If the physician doesnt think that the location matters, you might consider getting a second opinion from those who are on the cutting edge of this condition. If you don't need to be restricted, you shouldn't be. Good luck. Read and become educated. Ask lots of questions and don't be hesitant to find a doctor who is well known for this. It will make a world of difference. It did for our family...we are living normal lives and staying away from triggers meds.
- By meg12col
- Posted August 18, 2009 at 1:15 am
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When I was diagnosed with long qt myself, I was told I wasn't allowed to do competitive sports but I was and am allowed to do more recreational sports like golf and bowling. I was diagnosed after having symptoms, though. I also wasn't allowed to do gym anymore, but I didn't totally agree with that. Being on beta blockers has made being active difficult. I was originally started on 10mg twice a day and had no problems and then within a few months was put on 20mg twice a day and it took a couple weeks before exercise became easier. This past May it was raised to 40mg twice a day and it hasn't cooperated with exercise yet. With my other dosage, I was able to get to a moderate exercise level (My doc has said I can't do strenuous activity so mod level is the best I can do). I'm slowly trying to build it up again with just walking and biking right now. The key to being active with beta blockers is knowing your limits and to only push yourself a little at a time and knowing if your risk level of having an event or symptoms of long qt is considered to be low, moderate, or high; obviously if the risk is high, you shouldn't push yourself at all, while it's easier to if you have a low risk level; talk to your doctor about the risk involved and find out everything you need to know before really getting back to "pushing" yourself while being active.
- By ChristopherP
- Posted August 18, 2009 at 11:31 pm
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Heartfelt1,
Thank you very much for you response. It sounds like not a lot can be assumed until the genetic testing comes back. I sincerely hope that IF a mutation is there it is similar to the one you describe - no limitations on physical activity. I am in a bit of a dark hole of information right now. I advised my brothers to have ECGs but nothing definitely indicative of LQTS yet - although potentially. It is difficult to identify the "cutting-edge" experts in this area. Many cardiologists claim a working knowledge of the syndrome but you never know...More research will be necessary on my part. Thanks again!
- By dmwillden
- Posted August 19, 2009 at 1:44 pm
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To Heartfelt,
Can you tell me who your doctor is? Four of my children and myself also have LQT2 and I am very interested in any new information regarding physical activity.
Thank you!
- By heartfelt1
- Posted August 19, 2009 at 5:30 pm
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dmwillden,
First, let me mention that our family is asymptomatic and the prolonged QT (borderline 460ms) was found incidentally during a sports physical.
We sought a second opinion after being restricted from competitive sports, scary movies, hide-and-go-seek, public speaking, etc. We found these limitations incredible to deal with - having lived normal lives doing all those things with no symptoms, events, nothing. I read lots of medical journal articles and listened to several webcasts from specialists all over the world. (Heart Rhythm Society is a goldmind of information. The membership is free, I believe, but some of the powerpoint/audio presentations cost $15 per session. ) It was in one of these session from the 2009 Annual Meeting that it was suggested that LQT2 may not be as exercise induced as previously thought.
We sought our second opinion from Mayo Clinic in Minnesota where we have the distinct blessing to be treated by Dr. Michael Ackerman.
Do you know the exact LOCATION of your family mutation? (It will be some notation with numbers and letters.) If not, you need to ask for the test result and find out if its in a critical location on the gene. This will be an important peice of the puzzle. Dr Ilan Goldenberg is another expert in this field who is doing lots of work in the are of mutation location and its implication in treatment.
I have heard that no 2 patients with LQT are treated the same, as each person presents differently. So there may be some LQT2 patients who may be restricted based on their QT, symptoms, family history, etc.
Please let me know if I can be of any further info.
Best Wishes.
- By dmwillden
- Posted August 20, 2009 at 6:53 pm
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Heartfelt1
Thank you so much for the information! So far we have all been asympomatic as well, with the exeption of one son who had a seizure a couple of years ago, but nothing since. We are having a difficult time finding a treatment that is not too debilitating.
Do you know if Dr. Ackerman does consultations long distance if he has our records sent to him? I do have the actual gene location and all of our lab work, treadmill tests, and holter moniter info.
By the way, we have a "Class 1 variant" (KCNH2 Asn33 fs+25X) which our genetics Dr. said was a "Nuveaux" (sp?)mutation--new (not before recorded) Are you familiar with any of this?
I'm going to a SADS conference this weekend in Pheonix where I may have the opportunity to consult with some of the specialists. Do you have any advice on questions that I might ask?
Thank you again for the information and hope!!
- By heartfelt1
- Posted August 20, 2009 at 9:37 pm
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dmwillden,
You could email him and ask him his opinion. I know that its difficult for docs to say too much without seeing the patient in person. But you could tell him of your mutation and see what he says. Also, I have heard that Dr. Arthur Moss in Rochester NY will look at ekgs and knows a lot about mutation location etc. You could try him also.
What was your son's seizure like? Loss of consciousness? etc?
I have heard of "de novo" mutations, those occurring for the first time in a family. I have also heard of mutations being termed as "novel", as in, not being previously reported. I have heard that a lot of mutations are novel.
Have you been told if your mutation is located in the pore, N terminal or C terminal? That is helpful information for risk stratification. Pore region mutations carry a higher risk overall.
At the conference I would ask about sports. I would also ask about changes in thinking of this condition. So much of the information gathered from the International Registry has been on symptomatic cases. Now there are lots of people being identified that are asymptomatic and that could lead to better risk assessment and less treatment for some individuals. One talk I heard mentioned that there may be some over-treatment for asymptomatic patients who get identified on the "fluke".
Hope Phoenix is good...please report back what you learn.
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