Could this be Long Qt Syndrome ? Should my siblings be tested also ?

Hello , I am now currently 36 years old and my symptoms began when I was 12 years old . At age 12 , I began having episodes where I would get what felt like muscle spasms around my heart . When this would happen I would double over, I couldnt move and couldnt get my breath until the pain eased . I would also have times I felt my heart race and felt I couldnt catch my breath . Finally in fifth grade during P.E . I passed out and the school called my Mom . She took me to our family Doctor and he did some test and he said something was wrong but I would grow out of it . He just said to stop whatever I was doing when I had the pain and to listen to my body as to whether I should participate in certain activities. Well it did get better and episodes became more infrequent over the years . A friend in my class had the same problems as I was having.Her Mom took her to my doctor and she was told the same thing . Unfortunately she died when her heart stopped at age 21 .This of course scared me . I have a brother(SEAN) who had seizures when he was young .In his teens , he would pass out if he got excited . Also another brother (JC) who had an episode at age 13 while swimming . Thankfully my father was able to revive him after pulling him from the bottom of the pool . He would go on to have future blackouts while in P.E. in school . My mother had a racing heart condition and took atenolol ,but long qt was never mentioned . Her mother died suddenly at age 52 . My brother (SEAN) fathered a daughter when he was 17 . Unfortunately , we were not able to be a part of her life . However when his daughter was 13 she had a near drowning in a local lake and it was on the news . My mother contacted the local police for info and we found out that they were looking for my brother . They needed him to come to the hospital for testing . His daughter had suffered a heart attack which led to the drowning . He went and was tested . I contacted the family of her mother and told them to check my doctors records . I called the hospital and gave them permission to get my records. I knew in my heart she had the same problem I had at her age . Thankfully she had an ICD/Pacemaker installed and she recovered with some memory loss from the lack of oxygen when her heart stopped. But we never heard anymore about what had happened . I have suffered from Hypoglycemia for about 5 years now . During this time I have had numerous episodes where I nearly passed out . This all culminated in June of 2008 as my Mom was dying of cancer and I was caring for her . In June my blood sugar dropped suddenly to 42 after a meal . It triggered the same exact cramps around my heart ,shortness of breath ,racing heart,and my blood pressure went really high . Well as I got my blood sugar to rise , my heart settled down . I shouldve went to the ER. However , I had to take care of mom . The week prior to my moms passing I began a search for my niece . I found her online and sent her a letter. I felt she had the right to meet her grandmother and time was running out. Unfortunately , Mom passed away before My neice got the letter . The good news is, my niece whom I loved and missed is now a part of our lives and I finally found out what was wrong with her . She has Long Qt Syndrome and SADS . No one on her moms side has long qt so I have learned it must come from our side of the family . So for the past 3 months ,I have had an echo , ccta ,30 day heart monitor ,and 4 ecg's . The cardiologist says structurally my heart is "pretty ok" but he is referring me to an EP cardiologist for an Ep study . My QTc on each of the ecg's are as follows....480 ,480 ,487 ,481 . The only medication I take is 1000 mg of Metformin for insulin control . I dont smoke or drink . My current cardiologist says possible Long Qt Syndrome . Another Doctor thought it was a different problem . When questioned about my qtc interval he said well I am borderline prolonged qt and it seems to be a mild form . My question is, Why is it so hard to get them to say YES it is LQTS ? What can I expect from the Ep study ? Should my brothers be tested also ?

By AndreaA
Posted December 31, 2008 at 12:22 pm
Report post

My cardiologist thought I was "borderline" also, but I saw a specialist that told me a qtc over 450 in a woman is considered prolonged - it only has to be documented once for a diagnosis. You may want to see an electrophysiologist - they specialize in electrial problems with the heart.

By MoonFairy13
Posted December 31, 2008 at 6:31 pm
Report post

Please read this article and do not give up on your search for an answer. Know that doctors are taught to think within the box they were taugh and to think very black and white. The disease I have was SUPER gray and they refused for years to wrap their thoughts around its possibility until I almost died from it.

http://cardiovascres.oxfordjournals.org/cgi/content/full/50/2/379

Good luck dear, look everything up you can on your symptoms and go into the doctors armed with information. Let them know you have done your research and can talk their talk but also that you might even know something they don't.

Take care,
Moonfairy

By stevie13wonder
Posted January 1, 2009 at 11:17 am
Report post

Hi,
Your history sounds very consistent with Long QT Syndrome. Your QT intervals are prolonged. 480 is NOT borderline. There are EPs in the US that are very experienced in LQTS and are more than willing to help. Dr. AJ Moss is one of the world leaders in LQTS research and heads up the LQTS registry which has info on thousands of LQTS patients since the 70's. He has seen thousands of ECGs and is very good at reading them. If you send him copies of your ECGs and a brief history via email he will review them and give you an opinion. This is what I did and he even offered to discuss his findings with my EP.
His email address is
(heartajm @ heart.rochester.edu)
(no spaces before or after the @).
He doesn't see new patients now but he will help you find a doctor who does.
A lot of the LQTS patients that I have met over the past couple of years have similar stories where they have to seek out a diagnosis and possibly see several different doctors before a diagnosis can be reached.
Don't give up and yes, all your family members should be tested. Try to find a doctor soon who will at least prescribe beta blockers until a decisison can be made.
Good Luck,
Diane

By tdhssp
Posted January 1, 2009 at 3:17 pm
Report post

Our little girl passed away in December 2006 from a cardiac event at the age of 13. Samantha did have a rare chromosome disorder and a bicuspid aortic valve. She had a one day illness that stuck suddenly at school: Was fine, suddenly got pale, began to get gaggy and vomited a couple of times. She rested the day and seemed groggy, but being mainly non-verbal, was unable to express her needs. Samantha had been experiencing auras... upon review of medical documentation, this was noted as far back as her 3rd year by professionals, but the condition was not disclosed to us, explored, nor treated. We, parents, and school suspected something must be going on - we would see Samantha momentarily pause in the midst of an activity before resuming what she was doing - and so, our daughter underwent an echo and eeg. The echo was normal and did not show the valve difference (this can only be found on ultrasound; which was done following cardiac arrest) but we were told it is a common defect and should not be the cause of arrest. The eeg was determined to be "inconclusive" because our little girl grinded her teeth significantly. We were set up for another eeg under anesthesia to give a truer reading, but Samantha arrested the very day before the procedure. We know for sure there was absence seizures because earlier in the month she had an episode in our pediatrician's office that was witnessed by the doctor, a teacher and us and we were to begin treatment immediately following the test. The only clues in hindsight: A few weeks prior to the cardiac event, we found our daughter in the middle of the night, vomiting in her bed. She had not been sick either before sleep, nor following the episode of vomiting. She had also begun to belch more frequently than usual. I strongly believe the seizure activity is tied in to the cardiac event. Our sons, as well as my husband and I were all tested for potential familial cardiac defect (thankfully, none was present.) With the history you describe, I would strongly recommend - if only for peace of mind - that further exploration of possible problem with existing family members be pursued.
God Bless in the New Year!
Velvet
http://www.tetrasomy18p.ca/
"Samantha's Syndrome"

By GirlfromNapa
Posted January 2, 2009 at 3:04 pm
Report post

Dear Sandy - I too think you should get further testing. Has your neice had genetic testing? As a sypmtomatic first degree relative, your insurance should cover your testing also. I have been diagnosed with LQTS after surviving multiple SCAs and am currently waiting for genetic testing. I did receive a PM / ICD and have had no problems since.

I do want to share with you that I had LQTS ruled-out in 2002 with an EP study, which was before the genetic testing was available. This year, I had seven cardiac arrests the last weekend in Sept. Tell your doc that my 'borderline' QTc went from 480's to over 700 msec before they got me stable enough for the PM/ICD implant. There are EP's that speicalize, so look for referals. Mayo Clinic website is helpful also.

Take care,
~D~

By sandync36
Posted February 2, 2009 at 8:11 pm
Report post

Hello To everyone !! I am so sorry it has taken me so long to repost . Thank you so much for your insights,support ,and suggestions . Well here is my update .
Today I had an appointment with Dr Tony Simmons at Wake Forest University Baptist Center in Winston Salem,NC . He is an Electrophysiologist Cardiologist and Professor there. I was in office for 2 and 1/2 hours today . My highest Qtc to date showed 488 , however he used an instrument and recalculated it and said no it was really higher than that . But he didn't say how high . He was very concerned not only for me but also for my siblings . He ordered the Genetic Test for Long Qt Syndrome . He also said he wanted to put me through a series of test in office to initiate different stimulus on my heart to evaluate the seriousness of my situation. Also he wanted to do this before making the decision on the Ep Study . He said he needed to think on it tonight and study what is the best course for me since I have Bradycardia most of the time and intermitten tachycardia . I also have mild regurgitation from 3 of my heart valves . We discussed the possibility for placement of an ICD/Pacemaker and where it would go . I told him my biggest fear is something would happen and my heart would stop and no one would be around to help me. He said well thats a very real possibility for me. Well Dr. Simmons is wanting me back this week for all the test . Given he can get the genetic test delivered in time. So I am waiting on a phone call to return.... Thanks everyone again. Does anyone know what test he may be planning to do besides the genetic testing ? I have already had numerous Ecg's , a Ct angiogram , and an echocardiogram .

By sandync36
Posted February 11, 2009 at 2:14 pm
Report post

Wow! I am so thankful to be alive . I had an Epinephrine Infusion on friday feb 6th and I learned a couple of days ago that halfway through the test my QTC went from 472 to 690 . Well I came home and the next day I had an awefull event. I thought I was going to die. Went to a local emergency room and while I was having my attack they released me suddenly with pain meds and said my heart is fine. There was nothing wrong with my heart . Thankfully my husband took me not home but to Baptist Hospital in Winston Salem. My Qtc was 528 and rising and I was admitted . After a failed tilt table test on monday I was scheduled for surgery the next morning. I had a two lead medtronic ICD implanted and placed on metaprolol . I am very sore but thanks to God and the wonderful Cardiology Team at Wake Forest University Baptist...I AM ALIVE . I am home and will be recovering for the next four weeks.

By AndreaA
Posted February 11, 2009 at 6:48 pm
Report post

Hi Sandy - So good to hear from you - I, too, have a Medtronic ICD - My story is so similar to yours, only I actually had a cardiac arrest at the gym before getting implanted - I wholeheartedly recommend this site: http://www.icdsupportgroup.org/board/index.php - a wonderful support group for ICD users and their families. It's a weird, wonderful "family" - welcome!

By LQT2Wendy
Posted March 4, 2009 at 10:45 am
Report post

Oh Sandy I am SO glad you have such a smart husband!!!!!! ` I've been DX with Long QT since I was 14 (I'm 40 now) ` ~ defintely, 100% encourage your siblings to get the genetic testing ~ ~ ~ there is a specific Long QT facility ~ ~ look on the board for it ......

Take care Sandy ~ and I"ll be looking for you on the boards!

~ Peace & Blessings,
LQT2Wendy
Mom to 6 year old with Fetal Alcohol Syndrome
Foster mom to a 6 year old with drug exposures

Welcome to Inspire!

10 replies

Add to the discussion

Group leaders

You