Ieem - Dr Levine's Facility

[ACB]

So, I just got back from my new cardiologist follow-up appointment. For the past three weeks, I tried a low dose of fludrocortisone (0.05mg/day). (We settled on a low dose because I'm breastfeeding.) I didn't see any positive results, so I'm now off that. Before trying new meds, I'd like to see if Dr Levine's exercise protocol will work for me - I *should* have the protocol to start any day now. If it doesn't help, then I've decided to wean my son (he's two years old and I have been planning to let him self-wean) and start "doing drugs."

The thing is, I sure would like to have a better idea of what might be causing my POTS symptoms so that we can have a clearer plan for meds to try. Right now, I am on the waiting list for an appt with Dr. Levine in Dallas. I set that up soon after I was diagnosed with POTS in late January. What I'm wondering now, though, is what sort of autonomic nervous system testing facilities he has available. I mean, can he do everything Mayo in MN or Vanderbilt can do? If anyone knows, I sure would love your input.

BTW, I would just call Levine's office, but I've had horrible luck with getting answers and calls back so far. And, the website just says they have "state of the art" testing facilities.

[TXPOTS]

I know they do proper blood work in supine and standing positions with IV line and controlled conditions (catecholamines, aldosterone, renin, etc...). They offer CO rebreather blood volume analysis. I only had these tests done. I had already had the tilt testing three times prior at other places, but I am sure they offer this and more. Keep in mind that their opinion is that patients with POTS have small hearts and hypovolemia, so they focus on this area, not necessarily the autonomic nervous system. They did not cure my POTS or offer anything additional because I am already exercising beyond the protocol. However, this would be a really good place to start if you have not tried exercise. Very best of luck.

[ACB]

Keep in mind that their opinion is that patients with POTS have small hearts and hypovolemia, so they focus on this area, not necessarily the autonomic nervous system. They did not cure my POTS or offer anything additional because I am already exercising beyond the protocol. However, this would be a really good place to start if you have not tried exercise. Very best of luck.

Thank you so much for your response! Good to know that they have a range of testing options available. Because of the small heart/hypovolemia finding in his exercise article, I had been wondering if treatment might be focused in these areas to the exclusion of other possible causes. Thanks for confirming that.

I should be receiving the exercise protocol any day now through my local PCP. I'm eager to start it and am hopeful for results. However, I'm making plans in the event that it doesn't help. At this point (thanks in large part to your response), if the exercise doesn't help, I'm thinking that it might make more sense for me to go to Mayo for extensive testing rather than Levine's. Some of the symptoms I'm having (e.g., paresthesia, itchy rash) don't seem to be explained by small heart/hypovolemia or even ANS problems.

I'm sorry to hear that Levine's treatment plan did not work for you. Did you fit his small heart/hypovolemia criteria? Or, do you have different/additional problems? I've been doing recumbent biking every other evening and leg lifts/crunches on off evenings for about 1 1/2 months. I've seen no improvement, but also don't know if I'm working at an appropriate capacity to make changes.

Thank you, again, very much for your input! BTW, I noticed that you worked as a pharmacist pre-POTS. My younger sister is currently in pharmacy school.

[TXPOTS]

I started out with Dr. Suleman in Dallas. He recommended certain exercises, along with a seeing an endocrinologist. I was hypovolemic when I was first diagnosed with POTS. Over the next year, I slowly started exercising. Now I jog 8 miles about 4 times a week, row, do the elliptical, stairmaster, lift weights, etc... I still have POTS, so I went for a second opinion to Dr. Levine and his team in January. I was hoping I was missing some element to my exercise routine, but it seems I am well beyond the protocol. They found I was hypervolemic (a normal adaptation to high levels of exercise) and have normal upright catecholamines (NE is 300). They confirmed that I still have POTS and recommended a few pharmacological treatments/ changes that have not been successful, but I have not tried all their recommendations. The exercise did GREATLY improve my quality of life. I was bedridden and now I am very functional, but I suffer with debilitating orthostatic neck pain and headaches after being up for 4 hours. This lasts until I can rest my head on a recliner or lye down. The cause of my POTS is unknown after extensive testing over the last 2-3 years. Good luck to your sister! I enjoyed working as a pharmacist, but I much preferred hospital clinical pharmacy to retail.