Heart Fluttering

[mooshea]

After having two heart ablations, I still will have episodes of elevated heart rate, 150 times a minute, dizziness, and elevated blood pressure 186/100.  I have had near syncope episodes as well and seen flashes of light. But sometimes my blood pressure will be extremely low, 85/40 and heart rate 60. I had a tilt table test and passed out after 7 min. The doctors wanted to give me a medicine to raise my blood pressure. Because of occasional elevated blood pressure I didn't take the medicine. I had a heart cath in March due to chest pains along with the elevated heart rate and blood pressure and was told I didn't have heart problems but dysautonomia. I was given propanalol for future episodes. I have had 8 more attacks since March and now my doctor wants me to be on an antidepressant. I'm frustrated because although my heart cath showed nothing, my heart will still wake me up in the night fluttering. Is heart fluttering normal with dysautomia? And is this going to be my way of life now with dysautonomia?

[LivingInHope]

Mooshea said POTS was mentioned to him in his post of August 10th. When I responded to his post, I said: "Re:POTS" prior to mentioning the positive tilt table and standing norepinephrine over 600 that Vanderbilt says is required for a diagnosis of POTS, so hopefully Mooshea understood I was speaking of POTS.

[Heiferly]

Just a note on POTS ... I'm pretty sure SurgiMenopause knows this and just wasn't specific when she said it, but to be clear for mooshea ... it's not just any "positive" tilt table test, because tilts can be positive in various ways.  The tilt would have to be positive for POTS, which is to say the heart rate would have to increase at least 30 bpm or go over 120 bpm from lying down to the upright tilt position.

You can read more about the diagnosis of POTS here:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196

Mayo is experienced in diagnosing POTS, so you should be able to call and ask your docs there for clarification on whether you met the diagnostic criteria when you had your tilt.

SurgiMenopause is giving excellent advice on the plasma test for the pheo, by the way, especially considering you already had one positive urine test and they saw a nodule at one point.  I would definitely follow up on it just to make sure.

Have they tried holter or event monitoring to try to catch the fluttering at night and see what that's about?

[LivingInHope]

Due to the fact some pheochromoctyomas can have silent periods, catecholamines are sometimes normal in people with that type of tumor.  Some consider fasting plasma free metanephrines the best test for ruling out pheochromocytoma, even better than the urine test.  You would want to not take tylenol for something like either 48 or 72 hours ahead of the test, since it interferes with assaying the levels.  And you might want to get another scan- the most sensitive one out there- I wonder if now it would be with a 3 Tesla MRI machine, as they are supposed to pick up a lot of detail?  I had someone say a hemangioma on my liver had disappeared with a f/up ultrasound only to find out years later it was not only still there, but had grown!

Re: POTS- if you have a positive tilt table test and standing norepinephrine over 600 (pheo being ruled out), that's what Vanderbilt says is necessary to diagnose with POTS.  I was diagnosed at Kaiser after only a tilt table test.

[mooshea]

Yes, in fact I've had 3 urine test to check for pheochromocytoma. The first one showed that my catecholamines were elevated. The second and third one showed that all was normal. Also I had a body scan of the adrenal glands. The first body scan showed a 4mm nodule on my adrenal gland which they said wasn't big enough to remove. Six months later the body scan was done again to see if it had grown and they said it wasn't there anymore. I'm starting to wonder if I need a second opinion due to the recurrent episodes I have been having. Thanks for mentioning it. I am not familiar with the fasting plasma free metanephrines blood test though. I may look in to that. I went to Mayo Clinic in Minnesota so they may have done that test on me. POTS was mentioned to me too. But I never was actually diagnosed with it.

[LivingInHope]

Did they do fasting plasma free metanephrines blood test or at least a urinary metanephrines test close after a spike in blood pressure (like the numbers you mentioned) to rule out pheochromocytoma, a rare tumor of the adrenal gland that can emit high levels of catecholamines and causes epsiodic spikes in blood pressure?  

I have POTS (postural orthostatic tachycardia) and rarely, migraine related have seen flashes of light, but haven't really noticed a heart flutter though recently my heart felt like it did an irregular sort of beat for me.  I believe mitral valve prolapse can be pretty common to people with dysautonomia, if that's what you have.

I believe they say sometimes dysautonomia can go in remission- I hope that happens for you!