What more can I do for IST?

[Jenefer]

I have a complicated problem... First,I had Pulmonary Valve Stenosis, status post commissurotomy at age 2. I'm a 25 year old female, and 20 years later I'm having problems. I first started out with syncope in which I had x4 abnormal tilt-tables and a normal EPS study. My heart rate would drop to 20-30 when I was tilted-- BP 70/30. I was put on Midrodine by the Mayo Clinic and I did well the very few episodes of syncope after, and no recommenation about valve replacement.
   2 years later I still have some sycope however my pulse runs 130-140 -- B/P 80/40 (with SOB, Chest Pain, and Dizziness)dx as IST. After absolutely no help by all kinds of meds (digoxin, tenormin, visken, scetral)I had a partial ablation of SA node. This ablation has had no effect on my pulse and meds are still not working! I'm very symptomatic and just don't know how much more of this I can take.
   Then...another trip to Mayo... They didn't have much to offer me after an autonomic nervous system test (didn't show anything), echo( severe regurgitation of pulmonary valve), blood work (low Mg), and 24 hour urine for Norepinephrine, Epinephrine, Dopamine, and Metanephrines (didn't show anything). I'm now on Midrodine 5mg QID and Visken 5mg BID. Should I have another ablation? What about a pacemeaker? My cardiologist is just not sure what to do with me anymore, and I need help! What about another type of med that could possibly help with my pulse? I just feel like if my pulse was uncontrol I would feel better! I'm starting to feel like this is all in my head! Does anyone else have this problem!

[CCF CARDIO MD JMF]

Dear Jennifer,

First, this is not in your head.  Syncope is a difficult entity and is poorly understood event in the very best centers.  Given the brief in formation that you have provided, I may consider an evaluation for a pacemaker and/or further ablation.  

I would recommend a second opinion to further assist you and your physician in this complex problem.  I would strongly recommend Dr. Bruce Wilkoff at CCF for further questions.

[ginny]

Dear Jenefer,
I am sorry that you are feeling so unwell in so many ways.  The Doctor will address your complicated medical problems, but I as a lay person, can only offer some help in one area.  That area is your Magnesium level-low Mg.  Magnesium is called Nature's Calcium Channel Blocker.  Supplementing this mineral in combination with calcium may help you to feel better.  You take the minerals in a 2 to 1 dosage-two parts calcium to 1 part magnesium, you divide the dose, and the supplement amount that is safe is 1000 mgs. calcium/500 mgs. magnesium a day.  Take 1/2 at breakfast or lunch, and the other half at bedtime, and take 250 mgs. of Vit.C at the same time to aid absorption.  You should also mention this to your doctor.  Some people inherit a genetic tendency to low serum magnesium, and require prescription dosage of this mineral, and periodic medical monitoring of their Serum Mg. level.  And if you have any kidney problems, you should also consult with your doctor prior to taking Calcium.  If you are thinking of supplementing with these minerals, I also think you should research via the Web or Library, so that you are fully informed as to any precautions or contra-indications to use.
Hope you feel better!
Sincerely,
Ginny

[Deb]

Hi Jenny,

I too had this, IST is hard to find, and ablate.  I am glad though that the docs did not blast the entire SA node.  I know many docs that go in and say, "I am going to burn the SA node and slap in a pacemaker too".  Or they burn the AV node and place a pacemaker. These are not easy device's to live with. You have a good doctor, that they only got part of it. BUT, you need to maybe get another opinion.  It is not that you do not trust the other doctor, but sometimes getting a fresh idea, is good.  I bet the doctors here know of someone you can go to.  I know some sites that have info on IST and maybe the docs here do too.  But I also know of a doctor that deals with IST in women.  Let me know if you need any more info.  Take care.

[Deb]

Hi Jenny,

The doctor that Doc JMF mentioned, Dr. Bruce Wilkoff, is one of the best in the U.S.  I think the doctors on this site do a wonderful service for all of us.  

I would really consider going to see this doctor if you can.  But, I would really think, and make sure you have a great doctor who knows about pacing, before you do anything like an ablation that may commit you to a pacemaker.  Pacemakers are not the "perfect" solution to an ablation.  Unless you can find a  doctor who knows a great deal about them, and is willing to work with you until you feel good. Do not get me wrong......with a great doctor, an ablation and pacer placement can be the best thing for a patient.  But, just make sure you have a great doctor.  This is only my opinion, I am not a doctor. Take care.

[CCF CARDIO MD JMF]

Thanks again to all for your comments.