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  1. Derek, I have the same issue and know exactly what you're talking about. I've been able to notice I'm mostly triggered by certain foods so I'm able to avoid it or prepare. Bacon is the worst as I frequently get pre-syncope, and have to cook with a chair and fans. I'm assuming it has to do with the grease or fat, but unsure of why it happens? If you or anyone learns the science behind this let me know lol
  2. I'm not sure about OCD specifically, but there is definitely a high rate of anxiety with Dysautonomia's.
  3. Very much so, yes. Unfortunately [if it's true] I don't think there will ever be a way to physically prove it in an individual, only through data over a period of time. Alsmost wish it was the cause, as we haven't identified any underlying disease to explain my own Dysautonomia.
  4. I've had Primary Dysautonomia for over 15 years and no underlying cause has ever been identified. I have also never had a root canal.
  5. I'm late to reply, but I've always wondered about this as I had Dysautonomia symptoms and HPV Vaccine (Gardasil) around the same time. I think a lot of the correlation, however, is timing. Dysautonomia is highly prevelant in young teenage females which is also when HPV vaccine is suggested.
  6. Thank you everyone for the warm welcome and advice Reading through the forum, hearing stories I can empathize with, and seeing all the support mskes me feel very happy! @Pistol absolutely, I've always noticed the more energy the more I move. I make it a point to get out of bed by a certain time, make the bed, and get dressed, even if I just move to the couch. Luckily I have 6 rescue animal (3dogs, 3 cats) that keep me moving lol. Unfortunately some days just consist of sleep but it's something I continue to work on. @StayAtHomeMom I was late teens/early adulthood at my worst, and was your son's age when the symptoms became concerning. I can't change my medication because I wouldn't be able to get a new appointment in time, but talking to my PCM about restarting medication. I've been off for a couple of years after I stabilized. Was doing so great with my symptoms and was even in shape and going to the gym! I was on disability from age 18 to 24(?) but after i stabilized decided to get off of it and work. My Dysautonomia history is quite a story and I hope to share the whole thing over time. Going from disabled with debilitating symptoms, to stable and able to work, back to ground zero has been the hardest hit and I feel devastated. I worked so hard and sometimes wonder why I should even try to overcome this syndrome/disorder when it's always going to be a part of my life. Even if I tried though, I'm unsure if I would even be able to get back on disability. From my understanding, there's nothing wrong with my heart. My vagus nerve is the issue and sends the wrong information to my brain who then tells my heart to stop. No doctor has yet to find the underlying condition that causes my Dysautonomia. @bombsh3ll yes I do I be also have done the "poor man's" TTT recettly and plan to keep a log. My blood pressure and HR are also normal when laying and sitting down but still feel pretty crummy. Like right now I'm sitting back with my feet up but feel like I'm not getting enough oxygen and have to take deep breaths to rid the dizziness. My heart rate also likes to skyrocket for no reason sitting down, making me feel sweaty and trembly almost like an anxiety attack (but with no anxiety). So AGAIN that this is so long! I just have so much to say and never get to talk about it to anyone, especially to people who understand.
  7. Hello everyone Ive been searching for a active forum and happy I found this community! I’ve had Dysautonomia symptoms like heat intolerance, Tachycardia, dizziness, and fatigue since puberty. I wasn’t diagnosed however until I fainted when I was 16 because my symptoms were always attributed to my Social Anxiety Disorder. I was professionally diagnosed with NeuroCardiogenic Syncope (NcS) Abdul Postural Orthostatic Tachycardia Syndrome (POTS) via a Tilt Table Test. My symptoms are pretty average to most experience with thess illnesses, but oddity is in my TTT results. When I faint, my heart stops momentarily and my BP goes so slow it can’t be detected with machines. After being put on medications and dietary restrictions I started to faint less and less. After a year and half I stopped fainting completely, so my cardio ruled out getting a pacemaker after wearing a 2 week holter monitor. I still don’t faint to this day at age 30, but I get awfully close, especially in the heat. Ive dealt with my Dysautonomia symptoms for the past few years very well but am currently in a bad flare that doesn’t seem to ever end. My worst symptoms at the moment is very bad fatigue (don’t have energy to get out of bed kind) and basically complete Orthostatic intolerance. Standing up, standing, and sometimes sitting up gives me issues. My husband is getting ready separate from the Military, and only have 1 month left of our insurance benefits. I'm happy to have found this place as I feel like I’m drowning. Sorry this is so long! Thank you for taking the time to read.
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