Eraena Posted April 10, 2019 Report Share Posted April 10, 2019 I got a blood test a few days ago, and told myself, "If it comes back normal, it's a high probability that I have Dysautonomia.". I'm still doubting that I could have it, since it's mild, but still causes discomforting symptoms. What'dya know, they just called and said everything came back great. No nutritional deficiencies, my fasting glucose is normal, thyroid is normal. All is within normal ranges. I also got my heart and adrenal glands checked last year, which came back normal. But, I don't feel "normal". Why am I constantly lightheaded? Why do I switch from scorching hot to freezing cold? Why can't I sweat in 95 degree weather? Why does my BP stay down persistently low? Why does my HR race up to 30-70 beats more upon standing? I, for the life of me, don't want to bend over to pick up a sock, 'cause I know when I bend back up, I'll have pre-syncope and my heart will start freaking out. The only thing these symptoms point to, is Dysautonomia. I look up my symptoms. Yes, I use Dr. Google. "It must be anxiety, causing my lightheadedness. I must be unfit, because I don't sweat. I probably lay down too much, which is causing my low BP.". Yet, those things don't fit. I rarely get anxiety attacks, I can jog 30mins without stopping, I'm up walking around, because I don't want to be called lazy. Sorry for the complaining. Since the blood test came back normal, I guess it's time to salt-load? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 10, 2019 Report Share Posted April 10, 2019 All I can say is that we are very similar... and I'm frustrated too. I'm barely functional, can hardly eat, sleep, or exercise although that's a central feature of my life and I'm very fit. My temperature fluctuates from one extreme to the other and I I don't sweat, either. I don't have POTS, my TTT was inconclusive (partly due to the fact that I have painful and scary biopsies during it!)... but I'm persistently very hypotensive and forget about bending down! I avoid changing my clothes and if I drop something, it stays on the floor. I don't let myself lay down much unless I'm really about to pass out. I think about it and fantasize about it nonstop, though. I tell my doctors I feel like I have lost all of my blood but am also full of caffeine. I could pass out pretty much any time these days, and I black out very often... I'll also collapse a lot. I'm prescribed 15-20gm salt daily. I crave it, but I don't think it helps much. It doesn't matter how much fluid I drink. I hope you get answers and help... and if you do, please share! I don't know if we should feel better that there's someone else out there like us... Quote Link to comment Share on other sites More sharing options...
Clb75 Posted April 10, 2019 Report Share Posted April 10, 2019 Have you tried an electrophysiologist or tried to get a TTT? If you think it’s dysautonomia, working with a specialist may be the next step. Regular doctors who are unfamiliar with it will misdiagnose you or tell you it’s anxiety, etc. Unfortunately, it takes awhile to get a proper diagnosis. Hang in there! Quote Link to comment Share on other sites More sharing options...
Eraena Posted April 10, 2019 Author Report Share Posted April 10, 2019 33 minutes ago, Clb75 said: Have you tried an electrophysiologist or tried to get a TTT? If you think it’s dysautonomia, working with a specialist may be the next step. Regular doctors who are unfamiliar with it will misdiagnose you or tell you it’s anxiety, etc. Unfortunately, it takes awhile to get a proper diagnosis. Hang in there! I've been to a electrocardiologist and had a TTT. Electrocardiologist diagnosed me with POTS, but found out it's a different form of Dysautonomia. TTT came back normal, but still have symptoms when standing up manually. I've been to Dr. Paula Moore, in AL, Birmingham. She was perplexed. It sounded like POTS but symptoms don't completely match up. She went ahead and treated me as if I had POTS. 3 hours ago, RecipeForDisaster said: All I can say is that we are very similar... and I'm frustrated too. I'm barely functional, can hardly eat, sleep, or exercise although that's a central feature of my life and I'm very fit. My temperature fluctuates from one extreme to the other and I I don't sweat, either. I don't have POTS, my TTT was inconclusive (partly due to the fact that I have painful and scary biopsies during it!)... but I'm persistently very hypotensive and forget about bending down! I avoid changing my clothes and if I drop something, it stays on the floor. I don't let myself lay down much unless I'm really about to pass out. I think about it and fantasize about it nonstop, though. I tell my doctors I feel like I have lost all of my blood but am also full of caffeine. I could pass out pretty much any time these days, and I black out very often... I'll also collapse a lot. I'm prescribed 15-20gm salt daily. I crave it, but I don't think it helps much. It doesn't matter how much fluid I drink. I hope you get answers and help... and if you do, please share! I don't know if we should feel better that there's someone else out there like us... I do have answers. I know, at least I think, it's Dysautonomia. I created this post because I'm doubtful. It isn't severe, I'm not bedbound, and I don't faint. I don't know what I'm doing. I guess I'm just frustrated. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 11, 2019 Report Share Posted April 11, 2019 I have an EP and have had TTTs too. I suspect I have something in addition to dysautonomia, partly because I keep declining... and I don't fit any of the boxes. I'm treated as if I have straight dysautonomia but I really don't have a diagnosis, and some of what I have isn't explained by it... Quote Link to comment Share on other sites More sharing options...
jklass44 Posted April 11, 2019 Report Share Posted April 11, 2019 22 hours ago, Eraena said: But I don't feel "normal". Why am I constantly lightheaded? Why do I switch from scorching hot to freezing cold? Why can't I sweat in 95 degree weather? Why does my BP stay down persistently low? Why does my HR race up to 30-70 beats more upon standing? I, for the life of me, don't want to bend over to pick up a sock, 'cause I know when I bend back up, I'll have pre-syncope and my heart will start freaking out. The only thing these symptoms point to, is Dysautonomia. Have you ever been tested for IST, Lyme or Lupus? Some of the symptoms you describe can overlap with these conditions. Quote Link to comment Share on other sites More sharing options...
TCP Posted April 11, 2019 Report Share Posted April 11, 2019 Hi. I have autonomic dysfunction, EDS, POTS, Small Fibre Neuropathy and mast cell issues. TTT twice and conclusive POTS. I'm on Nebivolol for tachycardia. Diagnosed late in life. I don't black out too much now. Have constant nausea, dizziness etc. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.