Pots Or Inappropriate Sinus Tachy?

[halmad85]

I went to my regular Cardio today for the first time after my diagnoses of POTS. The doctor who diagnosed me doesn't know how to help me. I trust my regular Cardio very much as he has always been very good to me. But, today he told me he's not convinced that I have POTS. He believes my symptoms sound more like inappropriate sinus tachycardia. Now I'm not sure what to think.

I did have the tilt table and my pulse went from 65 to 145 within the first minute, then went back down until we did the drug and the same happened, up to 155. As far as I can see, the tilt table is supposed to differentiate between the two. So, why does he think this now? What's the difference? How do I know what's going on with me? Any suggestions?

[AJVDK]

I 1st was told that I had IST. The this is I think the like to use IST as a dx a you are to out grow it, or meds can help, or they can go in and prefrom a abltion to fix the SA node. I have had 2 sbltions, and the only made the POTS worse. I been told before by a doctor in Celevland that I should have never had the Abliotion as it was POTS all along, I thing the problem is it they are close to the same thing when it comes to the heart rate. The problem being is POTS effect os much more. I thing alot of cardio doctors still don't know alot about POTS. MY local cardio doctor took 5 years before he is fianlly will to listen that I have POTS but it took opitons from U of I , Mayo, and Cleveland for him to beleive it. Now he is treating me right on of Dr, Grubb med pub artical.

If you can get a 2nd option I would go for one, if you can I would go to Mayo, or Cleveland, or Dr. Grubb. ( I have never seen Dr. Grubb, but I think from everything I have heard, and read he's the person to see. I am not sure if this helps, I wish you the best!

Amy

[gdomaracki]

IST was my original diagnosis after NCS, but when my symptoms just didn't match up my cardiologist suggested POTS and sent me to a pots specialist. I would definately recommend seeing someone specifically trained in this area before having any ablation work done, bc like mentioned it can make it worse and luckily they ended up cancelling my appointment to have it done.

Best of luck! :smile

[cmtaylor5]

I was also originally diagosed with IST. Most doctors won't dx you with IST unless you have a resting heartrate that is over 100 as well as an inappropriate heart rate with standing and exercise. What's your resting heart rate like? The doc who misdiagnosed me didn't realize I had a resting pulse in the low 60's as I was nervous in the office the day he made the dx. Later, when he found out that I had a normal resting pulse, he admitted that he had made a mistake. I don't think all cardiologists are familiar with POTS.

Also, I was a former healthcare worker, and my first cardiologist immediately jumped on IST because it has an incredible prevelance in nurses and female healthcare workers. As soon as he found out I had worked in healthcare, he was positive and really didn't even order any more tests. Do you work in healthcare, by any chance?

I agree with previous advice. Find somebody who knows something about POTS and see what they think your dx should be. The treatment for IST is usually beta blockers, which also work for some POTS people, but I was also given a calcium channel blocker that just about killed me. Usually calcium channel blockers are not given to POTS patients.

Good Luck,

Carolyn

[Poohbear]

You really need an autonomic specialist to evaluate this because MOST Dr's do NOT know how to distinguish the two (although most of them have good intentions).

Vanderbilt and Mayo told me that it is highly unusual to see a patient that has both POTS and IST. It's often POTS misdiagnosed as IST. Having said that, my episodes were caught from start to finish while at Vandy and they were able to determine from those rythmn strips that I do have a seperate IST in addition to the POTS.

They still told me absolutely "No" to having ablation because it would make my overall condition much worse. They said the only time they would recommend having ablation is if the heart rythmn is irregular (not just fast).

If you can't see an autonomic specialist then at least see a couple of EP cardiology specialists to see if you can get this narrowed down.

Either way, meds are often effective at treating a fast rate for both IST and POTS so that should be your first route.

[halmad85]

Thanks for the replies. One reason I was confused about this is because, as Carolyn mentioned...my resting heartrate is usually normal. The only time my resting heartrate might be affected, is if I've been on my feet for a long time. Then I have to sit for a while before it will calm down. Although, I do sometimes have symptoms while resting, such as palpitations, chest pain, or fatigue, but my heartrate will be good.

Does anyone know what a TTT would show on someone with IST? I keep trying to look into it but I'm not getting very far.

I think my Cardio doesn't think I have POTS because he says it is rare. I don't think he has any other POTS patients. So, I think maybe he's hesitant to that diagnosis. Who knows? I do want to stick with him though as he does take very good care of me. He always takes my complaints seriously and is always available when I need him. He's my favorite doctor (and as many of us do...I have lots of doctors). He hasn't changed my diagnosis. He just doesn't agree with it, it seems. I guess in the long run it doesn't really matter what you call it, just as long as someone can make it better for me. It would be a bonus though to know for sure.

My Cardio did warn me about that ablation. My diagnosing Cardio set me up to see another EP doctor. My Cardio told me if he suggests ablation to me, he wants me to walk out right out the door!

I did start having all this joint pain when my POTS symptoms began. I don't recall seeing anything about joint pain being a symptoms of IST. I'm just not sure what to think anymore.