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.

For everyone who tries stuff and has it not work, I suggest EPOGEN injections. They are expensive but I had tried everything else known to man just about, and they helped me more than anything.

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...

My thyroid has always bounced around a lot. In fact, I left my last PCP after being with him for almost ten years because he intimated that I was strange/crazy and "messing with my thyroid meds" because there was no reason that it should bounce around like it does. Right I was first diagnosed with Hashimoto's, before I started on meds, I remember falling asleep during the day on the couch. I didn't INTEND to fall asleep, but I did. I would try and wake up, and I could hear everyone talking around me and wanted to participate in the conversation, but I couldn't. I couldn't get myself alert enough to open my eyes or say anything. I'm on two different thyroid meds: Levothyroxine and Compounded Liothyronine. Fortunatly, I work at a Specialty Pharmacy and my meds are much cheaper.

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

Unless your doctor told you to take them together, I'd try taking midodrine first and then adding the verapamil. I wonder why he prescribed verapamil??? As you said, it peripherally vasodilates. I was prescribed verapamil by a vascular doctor who was seeing me for Raynauds-type problems. But I was told by my EP cardiologist, who diagnosed my POTS, that it would make my orthostatic symptoms much worse. I'm not saying this is the wrong drug for you! Like you said, I'm just very curious why you were prescribed both of these drugs.

I've recently started taking POTS meds too, and it is a pain to wait and add just one medication at a time to your regimen. But like many of us, I have odd reactions to medications. So I would rather go slowly and see how each medication really affects me.

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 am 46 and was diagnosed about a year ago at age 45. Like someone else mentioned, I feel much older now than before pots dx. For us women in this age group, I wonder if menopause improves symptoms any or if there is no hormonal connection.

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?