Long QT Syndrome/Frustration

[mai_lin]

Hello,


I have found very little on the Internet about Long QT Syndrome, so I'm asking you.  
I have seen an Electro-physiologist after episodes of fainting and rapid heartbeats.  
He was practicing at a University hospital in Boston, so he was supposed to be very good,
he sent me home telling me that there was nothing that could be done.  
He was going to give me an event monitor, but I really felt that it wasn’t the best thing
considering during my episodes of rapid heartbeats I usually pass out.
But after reading a little on this Long QT Syndrome, which I have been labeled with
by 2 different doctors,
I've learned that it can cause sudden death in young people (I'm 21).
I've had several EKG's done, and they are typically the same, a QT ratio of 580-640.
Its very frustrating to get ‘the run around’ from doctors, especially those who seem
to be the most knowledgeable.
After seeing my primary care physician she recommended that I see someone new.
I had the appointment last week, and it seems that I am finally getting somewhere –
this new doctor has scheduled a stress test for next week, and I see him the following week.  
He put me on 25 mg of Atenolol, which makes me queezy.  
In the mean time I can not go to the gym anymore,
which will take some getting used to because I’ve been trying very hard to lose about 25 lbs.
I have a history of seizures supposedly due to epilepsy
that was diagnosed after I passed out and seized last September,
and I'm wondering if the two might be connected.
I was an extremely premature infant who went into cardiac arrest twice during my first 2 months of life.  
I’ve had a few fainting spells due to this and no one in my family has had this or other heart problems.  
I wonder if I’m following down the right road, or if I need to push the doctors that I’m seeing to do more.  
I’m scared to do things after passing out at the mall a few days ago due to someone startling me.  
I’m only 21 and hate to live in this kind of fear,
any information/support/advice you can give me would be kindly appreciated.
Jennifer

[CCF CARDIO MD JMF]

Dear Jennifer,

Long QTS is a syndrome that is only now becoming better understood.  There are various genetic forms of the disease and various clinical presentations and electrocardiograms.

You may want to check out various web sites for more information and support groups.  Dr. Moss, Rochester, NY is a world expert on this topic.  

I have listed several of the sites found using the search engine   www.dogpile.com.  

Long QT Syndrome
Resources on the cause, symptoms, signs, diagnosis, and treatment of this cardiac condition.
Looksmart category - Long QT Syndrome

Long QT Research
Article discusses the disease's origins in genetics and describes the research of a pair of Utah doctors. Includes pictures and
photos.
LookSmart category - Long QT Syndrome

European Information Center
In addition to FAQs, diagnostic criteria, drugs to avoid, and therapy, this QT Syndrome site has memorials to people who have
died from QT.
LookSmart category - Long QT Syndrome

SADS
Foundation for Sudden Arrhythmia Death Syndrome aims to save and improve the lives of people with Long QT Syndrome.
With news on genetic testing.
LookSmart category - Long QT Syndrome

SADS Foundation
Salt Lake City-based organization offers an extensive list of FAQs on Long QT Syndrome. They also provide answers to
individual queries.
LookSmart category - Long QT Syndrome

Roman-Ward Syndrome ECG
ECG shows the heartbeat of a woman with Romano-Ward syndrome, a type of inherited LQTS. Includes brief description of
what to look for.
LookSmart category - Long QT Syndrome

Nat'l Center for Biotech. Info
Detailed medical description of LQTS includes alternative names and abbreviations and the discoveries of various researchers.
LookSmart category - Long QT Syndrome

Vanderbilt Medical Center
Detailed explanation of LQTS touches on inherited and acquired causes, a clinical description, and sex and age distinctions.
LookSmart category - Long QT Syndrome



Search engine: GoTo.com found 10 or more documents.
The query string sent was +long +QT +syndrome
  1.   Long QT Syndrome

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     The European Information Center provides actual and interesting information about long QT
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     Genes and disease provides short descriptions of inherited disorders. It is hosted by the
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[carissa]

Hi Jennifer,

I also have long qt syndrome.  I have been through six cardiac arrests...It is nothing to mess around with!
I also have gastroparesis (paralyzed stomach) and when my potassium gets low from not eating well, it increases
my risk of cardiac arrest.  i am 22 and had my first episode when I was 18.  I also am not allowed to participate
in any strenuous activity, because of weakness due to chronic malnutrition and also because of long qt.  I used to play
sports all the time until six years ago when I first got sick with gastroparesis.  My doctors really can't explain why
I have long QT since it is typically inherited.  No one else in my family has it, has ever passed out, and there is not history
of sudden death in my family.  My doctors think possibly somehow it is related to my stomach problem,
but are very uncertain.  They've never seen a case like mine before.  I take 100 mg of tenormin a day, which wipes me out.
I sleep constantly, but they can't decrease the dose because I've gone into cardiac arrest on 75 mg! I am very limited in my activity
and it's tough being a college student and soon to be grad student and live with all of this (of course, the gastroparesis makes my problem
a whole lot worse)Most people with long qt can live a fairly normal life on medication..no strenuous activity, etc, but other than that it has
little effect them.  A QT interval of 580 is long...normal range is no higher than 440.  I would definitely get this checked out.  If you have any questions,
or just want someone who understands to talk to, feel free to e-mail me at ***@****.  Good Luck.

[Gary Hammond]

NOT A QUESTION--JUST LOOKING FOR JMF.

I am currently in room G110-09 at the Cleveland Clinic.  Last July I wrote a question on CABG, and it was answered by CCF CARDIO MD JMF.  I just wanted to thank him for the advice--Sorry about the misuse of the board, but I didn't know how else to do this.  

Gary Hammond

[Carissa-Long QT concerns]

Hi,

I have long QT syndrome and have A LOT of questions.  First of all, I went into cardiac arrest for the first time when I was 18 (now I am 22).  At the time I was taking Propulsid and E-mycin for gastroparesis (paralyzed stomach), and I had three episodes in a 14 hour period. I was in the ICU for a few days.  They took me off of those drugs, and said that was the only cause.  Six months later, during the second week of my freshman year of college, I passed out again.  In the hospital that time, they told me that my potssium level was 3.5.  
I know that is borderline normal, but they told me they felt that the low K had contributed to the problem, but also told me that I have long QT.  They started me on 75 Mg. of tenormin a day, and sent me to Johns Hopkins for a second opinion.  He thought the long qt was drug induced, but I was not taking any drugs that would lengthen the QT interval at that time. Actually, i was only taking Tenormin.  A year and a half later, at the end of my sophomore year of college, I went into cardiac arrest twice in one afternoon.  I was put back
in the ICU, and they increased my medication to 100 Mg.  a day.  My potassium that time was 3.3.  On this medication, I feel crappy all the time.  I am around 100 lbs and small, and this drug really wipes me out.  I need twelve hours of sleep a night, and still feel tired all the time.  I am slow at everything, and have a hard time focusing because I am tired all the time.  It does seem to control the problem so far though on this high dose.  It just interferes so much with my life though.  I am now a senior in college and planning to go to grad
school in the fall.  I have barely made it through college (excellent student, good grades, but always have to get extensions on my work).  My situation is complicated by the fact that I have gastroparesis and cannot eat much, and that also adds to the way I feel.  In December, I was in the hospital because of malnutrition and dehydration (my potassium was 2.7!).  I am concerned that when I cannot keep my food down, my medication also comes back up, and then when my K gets low it will cause a real problem.  I have already survived
six, and don't know if I will survive the seventh.  My doctors haven't wanted to put a pacer in unless they have to  because of my age, and also they think the tenormin should control it.  My situation is more complicated than most though.  Whenever I can't keep food down, I live in fear of having a problem with my heart.  they will not consider a pacer at this point though.  Does anyone think that it's necessary to really push it?  Given the way the medication makes me feel, plus the fact that I can't keep my food down, I'm concerned
about not going this route.

Also, no one else in my family has this problem, and there is no history of sudden death.  My doctors have wondered if there is a link between my gastroparesis and long qt, but have no idea what it wuld be.  I know both problems are fairly new in discovery and that they are being researched, and I was wondering if there's a possible link that doctors don't know about yet?  They have blamed it on low K, but sometimes I have problems when my K is in the low normal range, and not when it is really low (3.0).  Those are just some
questions I am not sure anyone can answer really, just on my mind.  I have good docs (Hershey Med.) and they take my case seriously, but I'm just at a loss and concerned right now.  Thanks for your input! Please feel free to e-mail me at ***@****

[janna]

There was a good article on long QT syndrome in Readers Digest about three years ago, can't remember the exact issue but the Readers Guide at your library would help you find it.  You might find it  useful

[monkeygirl]

Hey,

I suffer from long QT and have set up a home page including information about the disease, some of the bst links, as well as a section where other people suffering from this can post their name and e-mail address so that other people with this problem can contact them, or they can contact anyone on the list.  It's really hard to meet other people with this, and I really need some contacts.  Please check it out if you suffer from this this.  The link is www.monkeygirl.atfreeweb.com.

Good luck,
Carissa

[Laurie]

Dear Carissa,
We have got to talk!!  I have just been diagnosed with a rare form of Periodic Paralysis Hypokalemia called Andersens syndrome. With Andersens comes a long QT charactoristic.  My K+ levels have never gone below 3.0 which is why doctors ignored my low K+ for my first 3 er visits.  My symptoms have been ignored for years.  It was with my persistance and investigation on the web that led me to a Dr. Rabi Tawil at U of Rochester.  He is world renowned in the Periodic Paralysis field.  He has done papers on Andersens with Dr. Ptacek at U of Utah where they are researching Long QT and Andersens.  In Rochester they too are doing long QT research now.  I could not see Dr. Moss in Rochester because he is no longer seeing patients. I saw a Dr. James Daubert.  They did a table tilt test on me among other things and it showed long QT. I can't tolerate beta blockers because they lower my pulse in the 40's. I now have a defibrillator/pacemaker in. I am 36.   I can now take the beta blocker to protect me for long QT. I also take prescription K+ supplements 25 meq three times a day. One protection against long QT is to keep your K+ levels up there. I take calcium and magnesium supplements also because they go hand in hand with K+ Even if your readings are borderline it is imperative you keep them up- especially if you have Andersens!!  You say you are small. Some physical charactoristics of Andersens is low set ears, short stature, small chin, crooked pinky fingers, webbing of the 2nd and 3rd toes and of course long QT. You don't have to have all of these charactoristics .  You could just have one or two.  I want to say I also have gastroparesis which had the home doctors stumped.  Dr. Tawil says it may be due to the K+ fluctuations.  I also have decrease motility of my esophagus and swallowing muscles which improve with K+ but come back. My food goes down slowly and sometimes gets stuck.  I have been to Cleveland Clinic to see a gastroenterologist before I got my diagnosis of Andersens and saw a Dr. Falk. He was wonderful and is still following my case because he was interested in my final diagnosis.  You need to get this checked out. Andersens is a clinical diagnosis so you may have to travel to see a specialist like Dr. Tawil. I'd like to talk to you more about how you feel when your K+ is low- any neuromuscular complaints -muscle cramping weakness, tingling, numbness?  You are not too young for a defib either.  I have near fainting spells and they put one in me, my QT lengthened above 600 during the table tilt test. My daughter has Andersens too as does my mother.  They both have to take a beta blocker to start out with.  I am at work so can't email you direct but I will write on my home PC. Take care!

[monkeygirl]

Hi,

Thanks for the response.  This is quite interesting information because my doctors have never told me there could be another cause for long QT other than inherited, or drug induced.  No one else in my family has it, so it's quite interesting.  Because of my gastroparesis, that is certainly one reason why I have so much difficulty with my potassium.  I don't take in enough, but at the same time, when I'm malnourished that's what I'm the lowest on, even though I drink gatorade which has some K, and do other things to boost it. I have had difficulty figuring out why it may be low, even if I am eating ok (for me).  My potassium frequently runs low at 3.0-3.3.  That 2.7 a few months ago really scared me.  I went into cardiac arrest at 3.5 before.  When my K is low, I have a lot of symptoms-I am weak, have muscle spasms (like crazy), muscle pain and cramps, etc.  Those are all fairly normal for anybody with low K though...right? I don't fit any of the other symptoms...my ears are in a normal place, no webbed toes, I'm not excessively short...just 5'3" but it runs in my family.  I'm the same height as everyone else.  I think my chin is normal, and my pinky fingers are not crooked.  When I say I am small, I have a very small bone structure, have always been very thin (especially now with the gastroparesis).  My weight is around 93 pounds now, so I am underweight.  I do have a weakened immune system (had that my whole life, I've always been sick with everything) which only got worse after I got gastroparesis and was not able to eat much.  I'm not sure what my longest QT interval has been...I'm not sure they've ever told me.  I guess I could get them to look at my charts so I would know.  I can't take potassium supplements because they make me so sick because of the gastroparesis.  They are tough to digest.  Right now I am on nutritional support through a PICC line in my right arm, so I am getting potassium through my solution and I think my potassium has been ok while I've been on this stuff, but my doc is taking it out soon so who knows what will happen then.

I'll look forward to hearing from you again.  Thanks for writing,
Carissa