Sam1

Thanks, after relaying all of the info to one of the awesome nurses at the EP's office they got with the autonomic clinic and they scheduled me for full-blown TTT in 3 weeks. She said this one will be more intrusive than the basic one they perform on people (not sure what that means). They said after that they would try to get me in quickly since all of the med records are already at Vandy and the EP has already been in discussion with some of them on the situation. They really are top-notch over there.

Thanks again Sarah, Dr. Arnold already responded with some information that I will be relaying to my EP and PCP. Unfortunately their research is not complete on the modafinil in conjunction with propranolol, so she could not elaborate on that. And, that there are no existing studies available that evaluate confirmed POTS patients and the use of stimulants as a treatment for cognitive function, so it is a trial and error process between the patient and their doctor. Time to take the mystery wheel of symptoms and treatments out for another spin!

Have you tried sleeping in different positions? I've found that sticking a few pillows under my legs to raise them up a bit (or compression socks) help out on the really bad nights. Read around some places and it says if you raise your head a bit that helps too, but found it to be the opposite with me.

TYVM Sarah, I'm going to reach out to the author. I had no idea the level of importance that Vanderbilt played in autonomic research and am so grateful most of my surgeries and all of my doctors are there. Have to do something about it - reduced my schooling down to 1 class at a time because it takes so much time just to complete the homework.

All of us are different, but a PVC would occur then tachy would start up right after that either right when I tried to go to sleep or it would happen in the middle of the night and wake me up. Nothing worse when you know you have an issue, it happens when you sleep, you know you need sleep and are afraid to try and fall back asleep. Vicious cycle just as you said. The only way I could get past those episodes is with meds. Tried a couple of different sleep meds, some worked, some didn't. Ended up using alprazolam. Now I have the normal pills, but they do have some sublingual types that are very fast acting and don't take a very large dose to make you drowsy. At 6', 190 pounds, a 0.5mg sublingual would zonk me back out for 4 hours and there was no waking up impared the next morning. The issue that concerned me about actual sleeping meds is that sometimes the episodes would occur at 2-3am and I have to be up at 6am. Can't take an 8 hour sleep med at 3am if you have to wake up at 6.

I'm currently working on a PhD, which requires an astronomical amount of reading/research. In addition, am in the middle work working on a diagnosis to figure out what is causing my issues. Symptoms pretty much match up with POTS, but I will leave that determination up to the doctors. What I am concerned about is that when the "funk" comes on, it is almost impossible to read and retain the information without re-reading it. I read that some of the meds like Provigil or Ritalin are sometimes used in patients to combat both the exhaustion and inability to focus. Is anyone participating in a regimen that involves one of those or a similar med? My concern with it is obviously that they are amphetamine-like and what will happen to my heart rate. My normal resting rate is about 60~bpm, when I hit an episode of the funk for a few days or week or whatever, it bounces to 100ish on standing/moving around, but remains at about 60 resting. For those of you who (if any) are on that stuff (or any other med that helps concentration), do you experience any negative side effects with your heart rate? Thought I would ask around here before inquiring with any of my 4,000 doctors that all have their own opinion of what is wrong. Thanks

+1 - I tried a broth fast for 3 days to get me out of the "funk". Only made it two days but could tell a huge difference and now heat up a cup almost every day. Cool thing was I didn't know it but most butcher shops sell this. Only $8/quart for beef, lamb or chicken broth, and none of the stuff in it that is in commercially available stuff.

In the process of dx'ing by doctors now; few years ago I started having SVT's, ended up having two cardiac ablations in a year. SVT's went away but all the other stuff hangs around. Thought it was cardiac only, but I kept asking why does the cardiologist say it's just palps, the gastroenterologist say it's just IBS and the primary care dr. just say it's anxiety. Made no sense. Episodes come and go in pockets, I may be fine for 3-4 months then out of the blue I'm just down for 2-3 weeks at a time. One ER visit (lucky to work at a hospital next to Vanderbilt Univ.) this fresh off the boat resident suggested it may be autonomic issues. No one had mentioned that in 3 years of doctor's visits and surgery. Had a TTT last September and when they started recording for the baseline I was having PVC's and arrhythmias (hadn't even moved to the test yet), had trouble doing the breath test thing but my heart rate didn't change much when they started standing me up. Electrophysiologist said I had no issues because there were no abnormalities outside of low BP when standing. Recently I started having issues again and did not realize that melatonin is a big no-no for people with POTS, and the symptoms started when I started taking that again for sleep help. It made no sense to me, but working in a hospital, I spoke to one of the cardiologists (not my doctor) and told him about the BPM jumping from 60-100~ when standing sometimes (have an FDA approved ECG device on my phone to record), and all the other symptoms and he instantly told me to mention POTS to my dr. to see what they thought. Never heard of or imagined anything of the nature. I've got an implanted heart monitor that the cardiologist said always shows fine, all the ER visits my blood work shows fine, and they were trying to tell me that the TTT is fine too because I didn't exhibit the specific BPM rate spike at that specific time. Point being, the TTT may not be the determining factor in this situation. I try not to self-diagnose, but there is a huge difference in educating yourself and self-diagnosing. Your TTT may show fine at that specific point in time. Don't let that singular test be the factor in your diagnosis. It's just one of many. The TTT is a boring event that is just one of the many hassles that we must endure, it was no different than having an episode at home, except it was on a hard hospital table.