tachycardia induced cardiomyopathy

[bethanym26]

Hi!  I'm a 27 year old female, nonsmoker, no drug use.  As a child I had numerous episodes of syncope.  Diagnosed with neurocardiogenic sycope.  Then two years ago, out of the blue, I began having tachycardia with a resting rate in the 180's, standing rate 200's.  I was in Mass General for 4 months trying every beta blocker with no success.  I was diagnosed with POTS and finally, based on research, I was started on ritalin which brought my pulse down immediately to the 110-120 range and I was discharged 2 days later.  I also take high doses of florinef (.5 mg BID) and procrit.  I did well on this combo until this past October when I began having NSVT, seizures, chest pain.  They say that the seizures were from decrease blood flow to the brain.  My pulse has also increased a bit to resting rate 120's, standing rate 160's.  The echos showed an EF of 40 (previous EF of 65 last August).  It also showed an enlarged left ventricle.
My questions are:
1.  If I am on the best combo of meds for the POTS, yet have still managed to have a decrease in heart function, how do I keep it from progressing?
2.  I keep being told that tachycardia induced cardiomyopathy is easily treated, but my docs (now care at Beth Israel Deaconess in Boston) feel stymied by the situation because the tachycardia is dysautonomic and most frequently sinus.  Can this type of cardiomyopathy be treated when it's dysautonomic and not electrical in nature?
3.  Diagnostically, all that's been done are numerous tilt tables because the rythm is 99% sinus.  Are other tests recommended.
Thank you so much! Bethany

[CCF-M.D.-RCJ]

Bethany,

Sorry to read of your troubles.  I'll try to answer your questions in order.

1) The best way to keep the EF from dropping is (a) be fairly certain that indeed the tachycardia is causing the cardiomyopathy and (b) control the tachycardia.

2) I'll assume that you already are taking beta-blockers or are intolerant to them.  If medicinal therapy is not working to control the tachycardia, more agressive measures may be considered.  One potential therapy would include an ablation procedure with a pacemaker.  You would want to discuss this with your electrophysiologist at the BI as well as at another institution (for a second opinion).

3) An EP study might be considered to ensure that you don't have an ectopic atrial tachycaria masquerading as sinus tachycardia.  Most patients with a newly diagnosed cardiommyopathy at the Cleveland Clinic would undergo a right and left heart cath as well.  Also, other causes for the cardiomyopathy should be at least discussed, such as autoimmune disease, HIV infection, familial cardiomyopathy, peri-partum cardiomyopathy and ischemic heart disease.          

Good luck.

[bethanym26]

One other thing... the chronic tachycardia is causing huge amounts of weight loss.  The doctors said it's like doing aerobics around the clock and is making me hypermetabolic.  I am 5'1" and down to 92 pounds.  How do I stop this?   Thanks again.  Bethany

[lisaellis]

Hia, I'm early 30's and was also treated for over 6 months with Sinus Tachy (180's at rest) and a dilated cardiomyopathy. Despite my asking twice they insisted the Tachy was a sympton of the DCM and not the cause because it was Sinus.

At the eleventh hour as I was due to have a pacemaker (so they could increase the beta blockers to control the tachy) they discovered I had Atrial Tachy and NOT sinus afterall. I had an ablation which cured it and fingers crossed my DCM is now improving.

The point is you MUST go back and ask for a full EP study to rule out atrial or other Tachy as opposed to Sinus, my hospital was one of the most respected heart units in the country and my Cardiologist was respected in his field too and yet they STILL missed it!  

Go back!

[bethanym26]

Thank you so much for sharing your story.  I see the specialist today and it's good to know what questions to ask.  My cardiologist at Mass General was supposedly good, but all he ever did was tilt test after tilt test.  My new cardiologist has done nothing because he wants me seen by the cardiomyopathy specialist.  I'm so glad to know what to ask about and to know that there are options.  I hope you continue to do well.  Thank you and good luck.  Bethany

[TQ]

Hi Bethany,
I have had your symptoms in a lesser form for years.  Mine was caused by the thyroid.  This may be an over-simplified question because one assumes that the doctors start with the simplest possible solution first but, have they checked your thyroid levels?

Also, could you remind me what ablation is?

Thanks and good luck,
TQ