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ringsmackie's Achievements


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  1. I'm new to all of this (posted previously that I had a positive tilt table a couple weeks ago/waiting on official diagnosis). But I'm hoping this symptom can be explained - or at least someone can relate to it. When I lay down at night, my heart beats oddly. It feels like it's jolting, restarting, thumping, flip-flopping... I don't know the best word to describe it. But it happens frequently and sometimes it makes me so anxious that I have a panic attack. Which just makes things worse. Does anyone else experience this? Could it be related to POTS/NCS? Experiencing it again now and can't sleep because I'm worried! Thanks to anyone who can help!
  2. Hang in there! I haven't slept well either. I recently went 48 hours without sleep, which of course made all symptoms worse. I'm newly diagnosed as of a week ago, so I didn't know my lifelong battle with insomnia could be related!
  3. I thought so too! I have a call in to my doctor because I haven't heard from him yet with the official diagnoses. Hoping to hear soon, and get my hands on the results too.
  4. Tilt table is complete, and they skipped the IV because they couldn't find a vein. Apparently, I broke the record for fastest test, too. They tilted me, and I fainted in 60 seconds. Yay for breaking records?? The man running the test told me I have Neurocardiogenic Syncope. They put me on Fludrocortisone, told me to eat more salt (?!), and cut all caffeine... yikes. I asked the technician about POTS, and he laughed at me. He said it's over-diagnosed and not to worry about it. This makes me a bit uneasy, so I'm hoping to get my results so I can be sure. Either way - I'm happy to have a diagnosis of NCS.
  5. Hello! I came here a month or so ago to see if my symptoms sounded familiar and report that I'm getting a title table test. Well, that day is almost here. Tomorrow is the test, and I'm absolutely terrified! I know it's not a big deal and that it's a routine test. But, they said I have to get an IV and I'm a fainter when it comes to needles. I'm making myself sick thinking about it. I haven't slept and haven't kept down much food either. I think my biggest fear is that I'll be so anxious I somehow mess up the test and skew the results so they can't diagnose me. If that makes any sense. Anyway, just wanted to update everyone and thank them for the support! Any tips on how to relax during the test?!
  6. Thanks again to everyone who shared their story! I don't think there are any doctors here who believe in this sort of thing. I was diagnosed with NCS (without a TTT) about 15 years ago. I mentioned to it a doctor in the town I live in now, and he laughed in my face. So, I think I'm nervous about being misdiagnosed above all else. Interestingly, I had a mini tilt table test today! I was at the dentist and they laid my chair back to do some dental work, then lifted me back up to get an x-ray. I fainted when they lifted me back up. Sounds weird to say I was excited about fainting, but I think it may be a good sign that we're on the right track!
  7. Thank you, thank, thank you to everyone who chimed in! You are wonderful reminders to stay positive, and I hope I'll remember your encouraging words when the ttt actually happens! Less than a month away! Do my symptoms (in the original post above) sound like what any of you have gone through? Just wondering if maybe I'm close to finding an answer after all these years!
  8. No, he didn't say. But when I was younger, they wanted to do a tilt table. They struggled for 2 hours to get an IV in me, so they called it off. I was just assuming that the IV would happen again, but maybe not! I'm scared about the test, but honestly I think I'm more scared that I won't get an answer yet again. I just want to know if there's a name for what I'm going through.
  9. Thanks so much, Kalamazoo! That makes me feel so much better. It's just nice to hear that someone understands what I'm going through. I've had some rough years of people basically telling me that it's a) not their field of study, so not their problem or b ) all in my head. Were you diagnosed with POTS? I'm hoping for no IV - I'm glad to hear you didn't have one!
  10. Greetings! I'm brand new to the site - and Dysautonomia as a whole - but I wanted to reach out in hopes of maybe finding some comfort! As a disclaimer, I know asking for medical advice is against the rules, so I want to be clear that I'm not trying to do that! I just want to explain what I'm going through and see if maybe anyone can relate. For the past 10 or so years, I've had episodes of syncope. I've also experienced low blood pressure, anxiety, and headaches. Recently, however, those symptoms really became bothersome. My presyncope episodes have increased, and I generally feel terrible. I've been to a cardiologist, endocrinologist, regular family doctor, gastroenterologist, and back to the cardiologist. No one has any answers. Here are my symptoms: Fainting - out of nowhere! Feeling like I'm going to faint - also out of nowhere Racing pulse - also out of nowhere Heart palpitations (feels like flip-flopping, or skipped beats) Nausea Hypotension (resting rate is around 80/45) Hypoglycemic episodes Migraines Panic attacks/Anxiety Dizziness Intolerance to cold Feet/legs fall asleep super easily I'm a 28-year-old woman, in otherwise good health. My doctor has scheduled a tilt table test in March. I'm scared to death about it. Doctors routinely struggle to draw blood or insert an IV, so any kind of procedure scares me. I had a baby in 2015, and it took 20 IV attempts and 3 epidurals before there was any success. I guess I'm just hoping for some kind of comfort. Like, maybe this isn't such a mystery disease. After the endocrinologist told me he "had no answers" and the cardiologist told me "it's out of his hands," I just feel kind of hopeless. Thanks for any support, stories of similarity, or good vibes to get through the TTT.
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