StacyRN

How did the cortisol stim. test go?? Thinking of you!

I had a 24-hour holter monitor, and every time I stood up or lay down I wrote down the time. This way the cardiologist was able to see that I had no heart problems, just sinus tachycardia every time I stood up, and it would go back to normal when I would lie down. This was how he diagnosed POTS for me, even though he said he'd never heard of POTS before! So it was worth it for me, and insurance paid for it.

Epogen helps? How often do you have to have the injections? Did they explain to you why/how it helps POTS? Thanks...

I have never gone to the ER for my symptoms. I work in the medical field, and I know exactly what they would do: nothing. I also know what they would be saying behind my back. Waste of time. Sorry to be so negative, but it's true too much of the time...

I can totally relate to your experience, Caron! My endocrinologist couldn't figure out what was going on with me either. Don't you HATE it when doctors treat you like you're crazy, or attention-seeking?! Makes me SO mad! I've been in the medical field for 15+ years, and I'm not so intimidated by doctors anymore... but when I find a good one I am THRILLED! Most endocrinologists I've been to just want to put me on Wellbutrin because they tell me I'm depressed, and the only thing I'm depressed about is the fact that no one will listen!!!!!!!!! Stacy

Hi Jen! I'm pretty new too Sounds like you definitely have POTS! And probably EDS also, although I don't know too much about that syndrome yet. I have the same thyroid problem! In fact, they thought all my POTS symptoms were thyroid related for years, but even when the thyroid levels are normal I had symptoms and they couldn't figure that out. But it would go hypo, then hyper, etc. I finally figured out I have POTS on top of thyroid issues. It's an AWFUL feeling when no one can figure out what's wrong with you, and they tell you your levels are normal so you shouldn't be having symptoms! I just found a cardiologist/ electrophysiologist who knows about POTS, but they are few and far between... Try finding an EP cardiologist, I think they know more about dysautonomia than regular cardiologists do. You came to the right place joining the dinet forum! It is a lifesaver for me, and lets me know that I am not alone... alone is the worst feeling... Good luck to you, and let us know how you are doing and what works for you! Welcome Hugs, Stacy

I want to thank everyone who responded to my posting!!! It's so incredible to have a support group out there to talk to, and I SO appreciate every single response! I decided to start taking the midodrine and verapamil together, just like the doctor ordered, and just trust him that they work together. I started this morning, about an hour ago. It's so weird, it must be the midodrine, but I started feeling like the skin on my scalp was tightening up, and now I have tingling and chills all over my body! Oh well, I can live with that if it gives me more energy! Not too sure if I have more energy yet, but am hopeful (it's only been an hour after all! Anyway, will let you all know how it goes, and want to thank you all again for your input!!! Hugs!

I wonder about menopause too... I started having really bad symptoms around this time also.

My first question on the dinet forum! I found a doctor in my area that knows about POTS and treats it, and I'm THRILLED!!! However, he prescribed midodrine and verapamil. I'm wondering if I should start taking them both, or just start with one and see how it affects me before starting the other one too. I'm afraid I won't know which one is helping or making me worse if I start them together. Plus, I understand that midodrine is an alpha agonist, which causes peripheral arterial and venous constriction, helping to prevent blood pooling and raising BP, while verapamil is a calcium-channel blocker and causes vasodilation, lowering BP and HR. So wouldn't these two meds counteract eachother?? I was so excited to find a doctor who would treat me that I didn't think to ask him these questions at the time... I'm thinking I should start the midodrine, and wait a week or so before starting the verapamil so I know what's doing what... any advice? Also, I notice that when my systolic BP is lower, my HR is much higher, and vice versa. So I'm thinking the Verapamil lowering my BP wouldn't really help me... ?? I'm having a tilt table test in 2 weeks, which I've never had before. Would taking these meds change the results of the test? Thanks!

Hi! I'm new to the dinet forum, and I'm 49 years old, but feel 90... I have POTS. I finally found a doctor who knows about this today! He is starting me on midodrine and Verapamil (calcium-channel blocker), but I don't start until tomorrow... I HOPE they help! I was recently diagnosed, about a month ago, but have been really sick with it for 3 months now... but I'm pretty sure I've had it most of my life. Does anyone else take calcium-channel blockers? Do they help?