Jessica

What a fun memory! Swimming is such a fun a great form of exercise.

Ok, perfect! I have a list of physicians and I’m planning to go through and see who I can get in with the soonest. Thanks again.

Great, thank you for the info!

Callie&Toby - do you mind sharing the dysautonomia specialist you saw in Jacksonville? I am looking for one in the area.

Hi Elaine! I am also a former competitive swimmer. I recently was swimming with a master's group until a really bad flare up. I just wanted to say hi since you were asking if there other swimmers out there. Have you had you appointment yet? I am in FL, so thinking of seeing Dr. Snapper as well. I was supposed to do an open water swim in December, but due to this recent flare, I am not sure if it will happen or not.

I also have this and have varying levels of migraine pain daily. I have had it since July of this year. I just started a calcium channel blocker for some heart issues and I'm hoping that might help with the migraines too. If anyone finds anything that helps, please post about it!

Hi Morgan! Woah- what a story! I'm not glad that you're back, but I'm happy we've gotten to interact and I look forward to getting to know you better. Wishing you and your son the very best!

Hmmm... I'm not entirely sure, but I think they usually look at the ANA in combination with other tests. For example, I have a positive ANA. However, since all of my other tests run come back negative, they say I don't have an autoimmune disorder. Hope that helps or that someone who knows more can chime in ?

That does sound scary and I'm glad your doctors are responding to your concerns. I hope you get some answers soon!

Momandmore - Sounds like you might be around where I grew up. Messaging you now! :-)

Preach it, Rgaff!!!! I totally agree :-)

Hi mom&more! I wish that doctor would coordinate everything, but I've had a hard time getting ahold of him. I made a judgement call and decided to reschedule the autonomic testing because I honestly don't feel comfortable going through with it until the cardiac MRI is complete. I think VT can be much more serious if there are structural problems with the heart, which so far hasn't been proven with me. However, there is a possibility I have this genetic cardiomyopathy, so that is the reason for the upcoming MRI. That is interesting about the tilt table. There actually is a doctor that was recommended to me that does not have an autonomic lab, but does the "poor man's version". Are you near CHOP? The only reason I ask is because we just took my daughter there to see a specialist recently. It was for something unrelated to all of this though :-)

Hi Sarah! Thanks for the info. Is IST when your heart rate is just really fast when lying down? Mine is generally at a normal rate and will then shoot up randomly. I think a big part of that is these different arrhythmias that I have going on, although I don't think that is all of it because lots of times I will feel faint or "off" in the absence of an arrhythmia. Is there a specific test for IST?

Stephanie - I have all of these neuropathy symptoms too! They can be so disturbing!

That's wonderful! I need to find a doctor like that! I'm so glad you did :-)

Thank you for your reply. My PCP had CFS leak on her radar, but the neurologist I saw didn't think much of it. How has your orthostatic part changed for you? Sorry for all of my questions! I wonder about reduced blood volume as a symptom since my blood pressure is lower than my "norm".

Thanks, Katie! I think since it is past Oct 1st we are actually being seen at the same practice, but by different EP's. My EP is super nice, but not overly familiar with me and I don't even think is aware of the autonomic testing. We've only met once and my follow up visit isn't until the end of the month after I get a cardiac MRI. The reason I was still pursuing the testing is because I feel crappy all the time and have episodes of syncope/pre-syncope even when I haven't experienced the arrhythmia for a week or more. My original cardiologist (who I broke up with because they started to think I was being dramatic about my symptoms) thought maybe I had some vasovagal issues going on and I also have a history of gastroparesis, which is part of why dysautonomia was on the radar. I think I've decided I want to wait for the results of the MRI before pursuing the testing, although I dread weaning off of a beta blocker now knowing about the VT. Apparently if it's short, they don't get too worried about it? I'm worried for sure though!

Angelloz - Tell me more about the head pressure! It is such a bizarre symptom. Did you ever figure out what it was? Do you know what helped it get better or did it just eventually go away?

Oh my goodness, I am right there with you Stephanie. Are you pregnant now or did you just have a baby? My heart goes out to you. I feel like I am falling through the cracks and doctors aren't figuring out what's going on with me since the birth of my second, which was a year ago.

Hi, I'm Jessica and I've been browsing the forums for the past few months. At first I was too ill to type out anything that would make sense, but I've decided it's about time I say hello! This is the second time my body has gone somewhat haywire about 8 months after pregnancy. At first I was confident it was POTS or at least some form of dysautonomia, but now my heart isn't necessarily doing crazy things when I stand up like it was in the beginning. My blood pressure is on the low side for me and never went back up after my most recent pregnancy. If I'm hanging out not doing much, it's usually in the 90's/60's, which I know is nothing for many of you! It's different for me though, as my previous blood pressure was 120/80. Anyway, through trying to figure out what is going on, I've learned that I have some different arrhythmias, some of them benign, some of them not. I know this is not generally a part of POTS, but I have found some threads on here discussing it. Here is my predicament- I was scheduled for autonomic testing on Friday. But I JUST found out that my event monitor showed a short run of ventricular tachycardia and my EP wants me on a beta blocker. He is not overly concerned, but wants me to get a cardiac MRI to cover our bases. I know I can't be on the beta blocker before the testing, so I'm just not sure what to do. Hope that I don't have another run in the next few days and skip the BB? What if I have VT during the testing? I am so scared to learn about this VT. I just don't know! I am generally able to pinpoint when I'm having an arrhythmia, and a lot of my sensations are present constantly or at least most of the time. Especially when sitting still or lying down, I'll get these sensations of warmth in my extremities and I'll start to feel woozy. I can't document anything clinically relevant when doing a "poor man's" tilt table test. Have any of you had that where you couldn't document anything on your own, but something showed up on the TTT? I feel like no one knows what to do with me. I've also had daily headaches, sensations of pressure in my head, lots of nausea, tinnitus, etc. Anyway, I just wanted to say hello and "introduce" myself. Thanks for listening!