Worried about the lack of response to treatment

[outofsolutions]

I have been having problems with syncope occuring several times a week for almost a year now.  I have had 5 EP studies, 3 with ablations to correct arrhythmias.  I have an ILR.  The arrhythmias don't seem to be the cause of the syncope.  The current thought is that it is vaso vagal syncope.  It has left me without any quality of life and I am only 31 (female).

I have been on many different meds. (midodrine, florinef, theophyline, toprol, atenolol....) I am told that there are none left to try.  I am on a high salt diet, I drink a lot of fluids.  We are certain that it isn't seizures.  My BP tend to be nearly normal. (121/83 this morning).  I often feel my heart running fast before I pass out, I have never had bradycardia.  I am told that it is "my own" heart rate - sinus tachycardia has been mentioned.

My doctors are out of solutions.  I have been to several different electrophysioligists.  I have spent a lot of time in the hospital. Are there any other options?  I am about to lose my job because of this.  I have become isolated. I really need ideas.

[Forum-M.D.-bkj]

out,

sorry to hear of your events.

I would think about being seen at a tertiary referral center that specializes in syncope and autonomic dysfunction. Your problem clearly has impacted your life and I would start taking bigger steps in trying to come to a diagnosis and treatment.

good luck

[Smitty150]

I really feel for you.

The only question I can come up with is about where you've been treated and who did it.

Where were the procedures done?

[mariop]

Have you had a neurologist examine you?

Not all fainting is heart related.

Here's a site with some ideas for you:

http://www.wrongdiagnosis.com/sym/syncope.htm

[lostandconcerned]

I have been seen at three different facilities - St. Barnabas, Vally Hospital and UMDNJ. I have been seen by groups that specialize in syncope, they keep sending me to electrophysiologists. I don't know what you mean by a tertiary referral center, but I suspect that UMDNJ qualifies at least.

[outofsolutions]

Sorry, I posted this from my mother's machine before. I didn't realize that I was signed in as her (She has been trying to get the post up as well.)
I have been seen at three different facilities - St. Barnabas, Valley Hospital and UMDNJ. I have been seen by groups that specialize in syncope, they keep sending me to electrophysiologists who keep telling me that they are out of ideas and giving up on me. I don't know what you mean by a tertiary referral center, but I suspect that UMDNJ qualifies at least.

[--__]

If you've been seen by that many cardiologist without a diagnosis, I would probably be looking into another non cardiac cause of your syncope. If you've been diagnosed with some type of autonomic dysfunction as a cause of your symptoms I would look into a tertiary referral center with a specialty in that specific focus.

good luck