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Bailee

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  1. Hi everyone just wanted to give another update with some good news! I saw another neuromuscular doctor and she wanted to do a poor mans tilt table. I layer down 5 minutes, sat on the bed for 5 minutes this transition made me lightheaded, and finally I was supposed to stand for 5 minutes but within the first 2 minutes I fainted. My father was there to catch me thankfully. However my blood pressure spiked and my heart rate went to 142. I’ve been doing a lot of research trying to find the answers and I came across Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.Overactivity of the sympathetic nervous system. I go to Cleveland clinic and the neuromuscular doctor advised that is my best bet. She also advised I have additional cardio testing so that we don’t miss anything.
  2. currently can’t walk at all right now. Physically I can but it makes the fainting spells and symptoms worse or I become overly exhausted within walking a short distance. I’m using a wheelchair to get to and from places.I’ve done this in the past due to chronic injuries I’ve had because of the fainting. Two concussions and a broken collar bone. If I stand and/or walk for less than 10-15 minutes on a good day which isn’t often. Last time I stood for 8 minutes and fainted badly injuring my neck and shoulder. I instantly get lightheaded and pre-syncope. That’s why recumbent bike is my last resort. It’s been a couple hours and the shaking only occurs when I stand up. It hasn’t stopped. I notice this also happens when I climb the stairs (with assistance) to go to my bathtub. My legs always shake going down the stairs to take my bath (that’s where my bathroom is located). I wonder is the has something to do with the nervous system or orthostatic tremors? As far as overworking myself I don’t think that was the cause the workout was less than 10 minutes and my heart rate was under 120 the whole time. I checked my blood sugar it was fine so was blood pressure. I also had electrolytes before my workout. Drinking about 100oz-120oz of water a day. Taking salt tablets three times a day . Not on any medication right now because I don’t have a confirmed diagnosis yet. I visit a neuromuscular doctor on Monday.
  3. Does anyone get really shakey and heart racing during simple workouts. Trying to workout when I can but I get shakey like I have an adrenaline rush or drank to much caffeine but I haven’t. It’s weird? Not even doing a vigorous exercise just simple pedaling on recumbent bike.
  4. Does anyone get really shakey and heart racing during simple workouts. Trying to workout when I can but I get shakey like I have an adrenaline rush or drank to much caffeine but I haven’t. It’s weird? Not even doing a vigorous exercise just simple pedaling on recumbent bike.
  5. Just wanted to update everyone, on what’s happened in the past couple days? Hello I am Bailee Ray 19. I am a twin . I’ve been passing out quite frequently since the age of 14. My twin does not have any symptoms related to what’s going on with me. Yesterday I had an EMG appointment with autonomic sympathetic skin response Parasympathetic Cardiovagal function which was normal. The EMG showed no evidence of autonomic dysfunction, large fiber peripheral neuropathy ,right/lower extremity mononeuropathy, or right cervical radioculopathy. I am following up with a neuromuscular doctor as recommended with my neurologist who is unsure what my diagnosis is. I go to Cleveland Clinic to determine if this is dysautonomia/pots/or something else? Hopefully the QSART test , tilt table, and skin biopsy will give me an answer. I’m trying to be patient but it’s hard because as of right now my quality of life is being effected seeing as I can barely stand for 10 minutes and I’m constantly lightheaded with fatigue/brain fog. My hands and feet are constantly freezing and cold also.If anyone has any advice on what direction to take I would appreciate it and I appreciate everyone who has replied. I am currently doing the Levine program 20 minutes on my bike 3-4 times a week which leaves me very fatigue after. Which confuses me because before I passed out in July I was running 2 miles a day and now I can barely walk without getting lightheaded. Increased salt/salt tablets-compression socks-and drinking between 100oz-120oz of water a day.
  6. Hello I just discovered your website. In 2015 I started fainting when I was 14. This continued until I had to use a wheelchair everywhere and I would faint everyday. I was originally diagnosed with Neuro cardiogentic syncope. Around the year 2020-2021 I had a period with no fainting , I started increasing my exercise and fixed my diet which seemed to be the solution to my dysautonomia . However recently July 13th I passed out for the first time in a year and a half. I was on vacation in a hot state, so I figured that’s what caused it. My fainting is back , I can’t stand for more than 10 minutes , bond to a wheelchair, fast heart rate when doing the simplest of things such as standing or going to the bathroom. I had to defer my second year of college while my twin attends university because my fainting has become so frequent. my new doctor suspects I either have pots or something else- meaning at 14 I was misdiagnosed with the wrong type of dysaytonomia. I was on medications such as midrodrine, Propranolol, any many of the medications used to treat dysautonomia. My family and I refer to whatever is causing my fatigue and frequent fainting spells a mystery disease. I truly don’t know if I have Pots/dysautonomia , some other illness, or second pots thats being caused my something else. A couple of my lab results came back abnormal such as low absolute neutrophils, 1.1 RNP antibodies, postive speckled ANA. I’m suspecting that there maybe an autoimmune component but when refered to rheumatology they ran no blood test, did a physical exam and sent me on my way. I’m going to Cleveland Clinic in November to rule out if I have dysautonomia because I don’t show any signs other then increase heart rate and low blood pressure. I’ve had at least 10 doctors visits in the past 2 months. I went to being completely normal on my way to college two months ago to being practical house bond now. Any advice on where to go from here should I push with rheumatology for further testing. I’m also seeing a neuromuscular doctor.
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