thericky

Thanks for the replies. A day later and much has changed, as always. Cortisol test came back and her levels are fine. Looks like it was just a fluke. Now the doctor wants to put her back on Florinef and Midodrine, which she hasn't tried in 1-2 years. Last time, the Midodrine drove her nuts with goosebumps and chills but she's willing to give it a shot again. Personally, I don't have high hopes for it. She normally only has tachycardia when sitting up or standing. While she was on Toprol XL, it prevented her heart rate from skyrocketing. But right now she is off of that per doctor's orders while she's here in the hospital. So far, we haven't been able to find any other conditions that POTS may be secondary to. We're looking, but nothing yet. You're definitely right about hormones being a problem. Every time it's "that time of the month" for her, her condition worsens... and that happens to be right now, which certainly doesn't help her comfort level in the hospital. I am going to purchase some waist-high compression stockings today. She has been wearing thigh-high for a couple of days now and they don't seem to help. There have been talks on and off for a couple of years now about whether or not a pacemaker would help her. Any thoughts on that? Has anyone here with POTS gotten a pacemaker? Please continue to offer any advice you have. The doctor here is very nice, supportive, and eager to get my wife better... she just isn't sure how and seems to want to try anything.

My wife was diagnosed with POTS around 2.5 years ago. She was perfectly healthy and one day showed up to work, couldn't bare to stand to do her job due to fatigue and a pounding heart, came home, and never went back. After bouncing between cardiologists, we were told she has POTS. She has been taking Toprol XL with minimal success. It allows her to mostly function around the house, but she hasn't left the house more than a handful of times in the past couple of years, other than going to see doctors. She has heat intolerance and we live in Florida... you can see how that's a problem. She tried Flourinef, Midodrine, and a couple of others (briefly) but none seemed to help at all. We were kind of at a loss as to what to do next... and it stayed that way for a long time. A few days ago, she was sitting on the couch and suddenly her heart was racing more than usual and she said she needed to go to the emergency room. When we got there, her heart rate was at least 150. After her heart somewhat calmed down in the ER, they admitted her and she's been in a hospital room for the last few days. The cardiologist here wants to try new things in an attempt to reduce her POTS symptoms so she can actually get out of the house. The good news is that this cardiologist has worked with an EP who has treated POTS patients with some success in the past. They put her on Mestinon and Flourinef for the last couple of days which gave her horrible side effects (high heart rate up to 180, terrible stomach problems, etc). Now they're thinking that wasn't doing anything useful so they're taking her off of that as they just noticed her cortisol level is low. They said it's at 4. They're going to inject her with cortisol to see if her body is able to process it properly (I don't 100% understand what they're doing). The cardiologist said that the low cortisol may be what's causing some of her POTS symptoms and that correcting it may help. They also said her leg muscles are somewhat weak and wearing waist-high compression stockings along with doing leg exercises would help a bunch. So my questions for all of you are: 1. Have any of you had low cortisol levels and has correcting that helped with POTS symptoms? 2. Has wearing compression stockings and doing leg exercises helped any of you? 3. What would you recommend that I ask the doctor(s) while we're here in the hospital? We want to make the most out of this extended visit. 4. What other tests should we have them run while she's here? Thanks!

I've already checked out all of those links and every section of the web page. Also, we most certainly have air conditioning... POTS or no POTS, it's a requirement in Florida. We have it set around 72 degrees at all times. I was really hoping for a bit more help with regards to possible medications to try or any other suggestions anyone may have that we might not have tried already. While my support does help her get by, the goal is to get her to a point where my daily assistance isn't needed anymore just to do the most basic of things. Thanks!

I'm happy to have found this forum. My wife woke up one morning nearly 2 years ago with POTS. She was working a full-time job in a lab and went to work one day feeling awful. She came home and never returned, as POTS prevented her from doing so. It took a couple of doctors before it was properly diagnosed to the point where she received medication that helped a little, but not nearly enough. Her POTS has grown worse over the last year to the point where she now only leaves the house to see doctors. The rest of her time is spent indoors for fear of having a POTS-related episode while she's out with nowhere to lie down. Lying down makes her feel better most of the time, though in more serious episodes it takes minutes, if not hours, for her to feel okay again. She is extremely sensitive to heavy activity and heat. We live in Florida, where it's practically summer year-round, so doing anything outside is now nearly impossible for her. She's currently taking Toprol XL, which is what enables her to get out of bed and mostly function around the house. She's also taking salt tabs and drinking lots of water. She's tried Florinef which didn't help and midodrine which drove her nuts with goose bumps and didn't help. Now we're looking at trying out various other medications including Labetalol, Clonidine, and/or Norpace. Has anyone had any luck with any of these three or a combination thereof? Does anyone have any suggestions to help get her out of the house and functioning at least a little bit? Thanks for your help.