Those with POTS? Help!!

[gurs]

Ok, been going through some testing to see if I have POTS. Ive been wearing the heart monitor now 3 weeks...1 week to go. My cardiologist
called me in last week to tell me I have some unusual findings in my heart..he called it 'Idiopathic symptomatic Ventricular Tachycardia", and wanted me to have further heart testing, which Im doing. I had my TEE last week, and they said I have a small hole called ASD, and that everything looked fine on that end. I also have to have a MRI next week, and a ttt test in 2 weeks....i guess my question is ,and Im guessing this heart issue is probably norm for someone with POTS? has anyone with POTS had this? guess I should have asked my doc
when I saw him, but my brain-fog set in?

thanks

Gursie

[anita]

Hi Gursie,

About the ASD (atrial septal defect).  It is likely NOT from Sjogren's or POTS, but more likely (usually) a congenital defect.  I had one as well.  They would have done a "bubble test" to see if the blood was leaking (shunting) from one side to the other (not all ASD's are positive for shunting blood to the other side).  If so and they think it needs to be repaired, they can now fix some ASD's through the groin.  Mine was a bit more involved because I had an atrial aneurism as well so I had open heart to repair both the aneurism and ASD.  Being that you didn't mention them saying anything about a positive bubble test (and they would have told you), I'm hoping/assuming it's just a simple ASD that doesn't not need repair (but they will watch/check it periodically).

The POTS is causing the idiopathic Ventricular tachycardia.  What other tests are they wanting to do?  Since you're symptomatic, you may be a candidate for an EPS where they find the pathway that's causing the errant heart rates and ablate it. 

I bet your TTT will be positive...before even considering the injection (like mine was).  Keep in mind that there are many meds to help control the POTS.  It will take a little time to find the right combo and dose, but you WILL feel much better soon.

Please keep us posted.  I'll be keeping you in my thoughts.

Anita

[gurs]

thanks Anita...

Yeah, thats kinda what I figured..the POTS is causing the tachycardia...what is EPS? Im wondering if this is all just my hormone issues and severe menopause symptoms triggering the heart issues, which is causing the POTS??? ugghhh.. sounds like you have been through alot.

Going for my MRI next week, then the TTT. Even if I dont test positive on that, not worried. I def know I have this.
Oh, I think they did the bubble test with my TEE last week..they said they wanted to make sure it was ok...it was..very small ASD I guess too.

Thanks again...

Gursie

[anita]

The EPS stands for Electrophysiology Study.  Basically, they 'map' the electrical paths of your heart and then give you medicine to create the tachycardia (you are lightly sedated, but awake, and it's a VERY controlled study).  This way they can see where in your heart the errant signals are coming from.  Then they use radio frequencies to ablate/destroy the problem pathway.  I had one done.  They found a problem and did 2 ablations to correct it, but it ended up not being the problem that has been causing my tachycardia.  I may/may not have it done again to see if they can find other signals that are firing in error.  We are trying other meds first.

Here's one of many sites online that explains it better then I did.  http://www.nlm.nih.gov/medlineplus/ency/article/003867.htm

I wouldn't worry about this until they try meds first. 

I don't think your POTS has to do with hormones and menopause.  Hormones can cause some mild changes during a hot flash or something, but not like you are describing.   POTS is pretty common with Sjogren's, so it's probably the culprit.

[gurs]

Thanks again Anita!! I was just reading that menopause can make POTS worse? prob the hormone flucuations or something..

Also, seems when I had Rituxan before, my POTS symptoms were not half as bad..I havent had it in almost 2 years now and wondering if it was actually helping...I can barely stand up or do anything anymore...feels like Im on a merry-go-round all the time.. ha ha.

Yes, guess I can blame it all on the lovely sjogrens and autoimmune stuff.

Gursie

[anita]

Menopause probably does make it a little worse, but I don't think it causes it...which is what I thought you meant with it 'triggering' it.  Hormones can mess up many things.

That would be interesting to know if Rituxan helps POTS.  Are you planning to restart it?

[frolic]

While I don't have any mechanical heart problems I've found medication to be very helpful. Florinef is responsible for making me functional.

[LB]

Just wanted to clarify that ablations are strongly recommended against for the tachycardia seen in POTS.  Ablations usually make POTS worse. The tachycardia seen in POTS is actually a healthy reflexive heart response to the abnormal orthostatic stress caused by a drop in blood pressure.  Your heart is beating faster when you stand up to try to maintain proper blood flow to your brain.  This is a good thing, although it can be uncomfortable.  If you ablate the heart for simple POTS tachycardia, you will prevent the heart from maintaining proper blood pressure in response to orthostatic stress, and your POTS symptoms will get a whole lots worse when you stand up.

If a person has POTS and some other type of heart rhythm irregularity, besides just the normal POTS tachycardia, then an ablation might be appropriate,  but I know many POTS patients who became much sicker after an uneeded ablation given by a doctor that wasn't really a POTS expert.  Please seek a second or third opinion from someone who is a noted POTS expert before getting an ablation. 

Also, if you have POTS due to Sjogren's, it's probably because you have autonomic neuropathy.  It would be a good idea to see an autonomic neurologist.  There aren't that many of them, but they will be able to tell you if you have autonomic neuropathy.  50% of POTS patients do, and Sjogren's is the second most common cause of autonomic neuropathy behind diabetes, so there's a good chance that you might have it.  There are lots of symptomatic POTS meds, and some doctors will give IVIG for severe neuropathic POTS caused by Sjogren's. 

I have POTS/autonomic neuropathy due to Sjogren's.  Went on IVIG and my POTS and neuropathy greatly improved.