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Nova

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About Nova

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  1. Sylvie, thank you so very much. you hit the nail right on the head there... your words are a great comfort.
  2. thank you all for your replies. dysautonomia is a complex, often misdiagnosed, 'invisible illness'. it does effect different people in different ways, there is no 'test' or 'lab work' capable of diagnosing it definitively. i know that a 'tilt table' test *can* diagnose POTS. but as far as its effect, and experience on so many different people, so many different ways, there is just no way to do labwork, and limited medical/psychological Dr's who will recognize it. i just found it quite uncanny how the illness that my body became disabled with *literally* takes away your autonomy, which is
  3. thank you MomtoGiuliana. it has been a looooong time...it has been 7-8 years and i seem to be getting worse. the constant "you don't look THAT sick" has morphed into "you have ruined your life", and "you are not trying hard enough". right now the only way to have a roof over my head and eat is to live with my mom and dad. and my mother *always* knows how to make things worse. expressing and putting THAT much stress on a nervous system that is THIS messed up, is like giving someone with liver cirrhosis a glass of vodka with every meal. i even had my therapist talk to her and he said he
  4. yes, the dysautonomia most definitely seems to have come from a severe car accident, in which i had head neck and chest trauma. any of my doctors will tell you specifically that they think it was either the damage to my heart, or the severe whiplash incident, which no one checked until wayyy later. i guess it is just the 'your illness is the equivalent of what you dealt with mentally/emotionally your whole life'. kind of thing... thank you all
  5. i am so sorry shrparatch... i know this feeling WAY too well... before the Dysautonomia landed me in the hospital for almost a year in/out (i counted... around 8 1/2 our of 12 months admitted in the hospital, not home. when i could feel my body just totally giving way, i refused to stop working... though i would cry to and from work constantly in sickness and pain. until my nurse manager told me "look, you are a good nurse, and i have never had a complaint about you from the patients or other staff... but it only takes one look to see you are very sick, and are dragging yourself into the gr
  6. so please be gentle? i have lived with a narcissistic mother my whole life... it was always "you cant do anything right on your own", or "why do you do everything so strangely (wrong)?" etc... it has occurred to me that Dysautonomia is a body's inability to regulate itself autonomously. which is exactly what you are basically told your whole life by a narcissist. i am not saying this is "psychosomatic" as in "you are doing it to yourself mentally"... i am wondering if eventually your body follows the program your mind and emotions have been indoctrinated into...? i know this is tricky
  7. 'hyper-adrenergic' and nothing works for me. and my sweat actually SMELLS like... chemicals.... like i feel like i am sweating adrenaline and cortisol and thyroid hormones... it is very strange.
  8. i actually would like to know if you have the 'hyper-adrenergic' form or not... i have experienced similar things with alcohol, or major sedatives... it has actually stunned people that my nervous system could take "that much sedative" and i could be just sitting there talking calmly, and thinking "so this is what normal feels like... i forgot". the 'hyper-adrenergic' is a different breed. just be careful, it could end you up an alcoholic or over sedating and you don't want that.
  9. Hello to all of you! and thank you all for the welcome.... sorry if it seemed that it took me a long time to respond... i thought i would have some sort of 'notification' in my email, or something that would let me know someone responded. i did not know that you did. i will check more often now. i so very much need to know that other people can (and how they do) 'live' with this.... as far as my resting rate being 120bpm, it will go as high as the 170-180's with *very mild* exertion. because i have the 'hyper-adrenergic' type, i only pass out when my heart suddenly jumps into 'a-fib',
  10. Hello Sarah! thank you so much for the warm welcome. it is amazing but something as seemingly small as that actually made me tear up... in a good way... i thank you again. and yes, it seems to be getting worse each year, and it is scary when it feels like either no one believes you, or if they do, that they take the attitude that you just need to 'get back on the horse' and "function". if i *never* heard the word "function" again aimed at me like a weapon ever again in my life it would be too soon!. haha. i truly understand that they don't "understand" what this illness is like. though
  11. hello to all of you. i am so grateful that there is a site like this, for people with a syndrome that is rare, and very rarely picked up on for so very long ... that support exists here, that questions can be answered here, that experiences can be shared here. and yet, at the same time, i wish that this forum truly did not *have* to exist. that i wish so many people diagnosed with dysautonomia did not have to deal with being given no support at all, did not have so many doctors who only tell them they have no answers for them (IF they even take you seriously at all), did not end up losing
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