Electrophysiologist For Ss Syndrome

[relentless]

My cardiologist wants to send me to a electrophysiologist after the results of my holtor monitor. They said it showed sick sinus syndrome. Fast/Slow rythmn's. I couldn't complete the stress test because my legs give way on the treadmill when I get extremely dizzy.

Do electrophysiologist know about autonomic disorders? I had an earlier post about my body buzzing while laying down, and between that and the dizziness, fatique and memory loss, I'm hoping one doctor can put it all together so I don't have to see a neurologist.

thank you for any input. I'm hoping I'm on the road to an answer and a cure. I really can't take the bad, bad, BAD days anymore. Walking from 1 room to another somedays, or just getting out of a chair makes me feel like I'm going to pass out. I want my life back while I am still young enough to enjoy it. I feel like I'm 90 most days.

[persephone]

I just spent 7 weeks under an EP in Dundee and she was brilliant- had researched at Venderbilt and knew David Robertson. Have faith! THe EP will know that POTS can sometimes resemble sick sinus- I get fast and slow rhythms too, but in fact our sinus nodes are perfectly healthy- it's just the wiring that gets wonky, rather than the node itself being damaged. So you will be able to hopefully get a closer inspection from this person. Don't worry!

[relentless]

thank you persephone. I went to my cardiologists website to see who the doctor was. The site doesn't list any credentials, but a google search of his name shows that he is listed as one of the "CANDIDATES FOR ADVANCEMENT TO FELLOWSHIP" (sorry for the caps - it's a copy/paste) at the American College of Cardiology in Bethesda, MD.

http://www.acc.org/about/cip_advancement.htm

Maybe that is good? lol I'm sorry. I've just seen to many quacks in my time to have much trust of doctors at all. Thus the 10 yr gap in seeing a doctor. At least the cardiovascular group that I am going to is the largest in my state, and after 10 yrs+ of abnormal ekgs, the cardio decided to refer me to look further.

What kind of tests can I expect? I still think a tilt test would tell them more than any other test, and it is not invasive. I googled electrophysiologist, and their cath tests look scary. After having several TIA's in the past with resulting damage, my sphincter muscle (that that one) is totally hosed. I'm scared to death of anything invasive that could cause me to throw another clot.

I'm sorry for being such a whiner!

[marnian]

EPs tend to be at least somewhat familiar with POTS so they should be able to tell the difference/relationship with POTS and SS Syndrome. They're likely to order EKGs, Holters, and tilt tests just like cardios. There's also a version of a stress test where they give you medicine rather than walking/running on a treadmill if that might help.

There are some more invasive tests too, but I wouldn't worry about them until they suggest it. It's better to just focus on one thing at a time. Before you agree to anything though, look around on the boards here. Some tests have "extra features" worth avoiding.

[relentless]

EPs tend to be at least somewhat familiar with POTS so they should be able to tell the difference/relationship with POTS and SS Syndrome. They're likely to order EKGs, Holters, and tilt tests just like cardios. There's also a version of a stress test where they give you medicine rather than walking/running on a treadmill if that might help.

There are some more invasive tests too, but I wouldn't worry about them until they suggest it. It's better to just focus on one thing at a time. Before you agree to anything though, look around on the boards here. Some tests have "extra features" worth avoiding.

Thank you. That gives me some relief knowing they won't do invasive tests. I did read here where someone had an ablation and it worsened her condition badly. That kind of thing scares the heck out of me.

Also, I'm glad they can tell the difference between syndromes.

thank you so much.

[AJVDK]

I was told I once had SSS ( Sick since sydrom), It was after an abltion, really underline problem all along was POTS. I had to go to Mayo, and Cleveland to find it out. I think for me my doctors where grasping at anything, as I was also told I had SVT, IST, and the list goes on. They kept on guessing and I was young and didn't know and just trusted the doctors. I was one that had tow abltions, and a pacemaker and it did make things worse for me. I am finally slowly started to have 4-5 hours a day where I can do some things. I am still unable to work, but I am finally up and moving!

Just don't be afaird to ask questions with the EP, I think now there is more knowledge there there was even 2 years ago. My EP now (same one) he know all about POTS and treatment. For me the SSS they thought I had was due to the abltion. So it was fixed after the Pacer was placed, but still had POTS.

EP are bid into test, like stress tests, ekg, tilt table test, blood work, they look for anything casueing the heart rate change.

I hope you are able to find some answers! Let us know how it goes!

[relentless]

So it was fixed after the Pacer was placed, but still had POTS.

That's what I'm afraid of. I want it all fixed. I'm so tired of having no life. The cardio assistant did say I would probably need a pacemaker, since I am allergic to so many meds. I just don't know what it will do for the autonomic problems. For me to take this step in even seeing doctors after so many years, I want it fixed as much as possible once and for all. Wishful thinking I know

Also, I am total self-pay, so I don't want unnecessary tests on wild goose chases. My dad had neuro problems, and my son is like me, only younger and healthier to withstand the symptoms.

I will let you know how I make out. At least this gives me hope.