Inappropriate Sinus Tachycardia Treatment That Works!

My 28 year old daughter was diagnosed with IST in Oct, 2006.  She had a resting heart rate of 130-140 bpm.  When she walked, it went up to 180 bpm.  She became totally disabled.
She had 2 ablations that were uncessful and seemed to make the problem worse.  
We went to St. Luke's Hospital in Milwaukee Wisconsin and Dr. Sra did a total ablation of the sinus node using epicardial ablation. He also needed to go inside to ablate.
She no longer has a working sinus node and her AV node took over the pacing of her heart.  Her resting heart rate is now between 65 to 70 BPM and her walking HR is in the 80's range.
This procedure is like a miracle.  It has been 2 weeks and so far so good.  
The doctor said that some day her rate may drop and if it does, all she will need is a pacemaker. It also may never happen.
This is fine considering she had lost her normal life before the Epicardial Ablation of the entire sinus node.  This was NOT a modification of the sinus node. Her sinus node is totally non-functioning.
I just wanted people with Inappropriate Sinus Tachycardia to realize that this is a cure/option for their problem.
My daughter tried all medications and they only lowered her blood pressure and not her heart rate.
Anyone with IST needs to check into having this procedure.
Living for years with this problem is unimaginable.  I can not believe any doctor would even consider having a patient to live like this.  Also, very few doctors in the country do this procedure.  We flew to Milwaukee, Wisconsin for treatment.
My daughter can now resume a normal life.

[bama jane]

I am so happy for your daughter.  Thanks for sharing that information.

[BEACHBUMCAG]

i have Inappropriate Sinus Tachycardia (IST) and have had it for years... my resting heart rate during the day is anywhere between 90-115bpm

[Steph0436]

I am 20 yrs old and I have had IST for two years now. I am currently on an extremely high dose of medication (so high I have to get it from a specialty pharmacy). My doctor recently recommended this proceedure, but I am a little skeptical. Could you provide me with a little info on it.

[BEACHBUMCAG]

glad to hear she is doing well

[PikaPika88]

Sick Sinus Syndrome needs a pacemaker, how come an unfunction Sinus node don't need a pacemaker and still got heart beats?  Well, EP can ablate the Sinus node for SSS.  It is better than insert a pacemaker.  Unless she had 2 Sinus nodes.  Otherwise where her heart beats come from?  I hope she is not living with the wave beats.  I'm curious.  I need someone to explain that for me.  Thank you.

[questionnone]

I am glad to hear that your daughter is now doing ok and that the procedure worked! I wanted to pass along some information for anyone who wants to read. I spoke with a well respected electrophysiologist/cardiologist and was told that most doctors do not perform full sinus node ablations anymore (but don't take my word for it, I am sure they still do it if it's a emergency or last resort type of thing, or maybe even up to the doctor). Get some second opinions before agreeing to procedures! He said that beta blockers are your best bet and people in Europe have this other drug that works even better but I think it's hard to get your hands on it in the US.

[robomommy5]

I have also been diagnosed with IST. I have had 3 ablations that also only seem to make the problem worse. I am truly frustrated and trying to " live with it".I am on MASS quantities of Rythmol, and it makes me feel SO sick. At one point my EP specialist had talked about doing a total SV node burn and replacing it with a pacemaker... I am ready for this procedure. This has affected my life drastically and has disabled me as well. I am interested in finding out more about this ablation of the SV that your daughter had.I am desperate at this point!! my resting is getting at 165-173! Walking it will jump to 210.

[runnergirl313]

I was "diagnosed" with IST a few months back. My Dr. is at St. Lukes in Houston, TX. He doesnt want to do the ablation because I am only 24 and does not want to give me a pace maker. I have been in beta blockers since February trying to regulate everything. Every few months I have to call him and change up my medications and dosages. I am at the point where I am so tired of having chest pain, light headedness, numbess and tingling in my feet and legs, head aches, and shortness of breathe. I want to get it fixed but am also scared of surgery! It is so frustrating because it makes me feel crazy half the time and sometimes I dont know if its anxiety causing my symptoms or if its my IST. Any advice?

[runnergirl313]

I was "diagnosed" with IST a few months back. My Dr. is at St. Lukes in Houston, TX. He doesnt want to do the ablation because I am only 24 and does not want to give me a pace maker. I have been in beta blockers since February trying to regulate everything. Every few months I have to call him and change up my medications and dosages. I am at the point where I am so tired of having chest pain, light headedness, numbess and tingling in my feet and legs, head aches, and shortness of breathe. I want to get it fixed but am also scared of surgery! It is so frustrating because it makes me feel crazy half the time and sometimes I dont know if its anxiety causing my symptoms or if its my IST. Any advice?

[runnergirl313]

Did you ever get a procedure? I got my IST diagnosis a few months ago. I am a 24 year old college senior. I am so tired of the constant symptoms and horrible amounts of beta blockers I am taking. The beta blockers only work for a few months and then I have to revamp my dosages. He said the only way to fix it permanatley is to ablate the sinus node and put in a pace maker. I havent gotten a second opinon yet but am thinking about it.

[Shannon21073]

I am 39 and have just been diagnosed with IST. I had an ablation for AVNRT five years ago. My symptoms are the exact same as yours and my EP doctor is trying to get his hands on a drug called Ivadrabine, which has had GREAT success in Europe, Canada, and Mexico.

[Shannon21073]

My resting HR is in the 120's. Walking is 190's.

[amandajamison240]

I am a nursing student and I can tell you that every muscle cell in the heart has the capability of regulating the heart beat.  If the Sinus node is removed the heart rate will be taken over by the atrioventricular node, or AV node, which you could say is the second most important.  But the heart would still beat even if both the Sinus and AV nodes are removed, just not well.  I also have been diagnosed recently with IST, but so far I have only been treated with Metropolol, which has not been effecitve