zerohours000

I've basically given up all hope. I don't even want answers at this point. I mean --- what is even the point? I have to stress out about finding the right doctors/diagnoses only to find out it's all bad news anyways. What a waste. Quality of life right now is nothing. I give up. I quit.

See. I don't fall asleep fast. I have to stay up very late. Then I sort of get up every hour or two. Lately, I've been having those same surges you just talked about. Oddly, I have no heart issues or BP issues. It's just I get this rush of adrenaline in my body and it feels like I have to go run a marathon but all I want to do is scream into my pillow to get the energy out of me, It's very annoying. I remember long ago I had this issue but never like this. Not getting any sleep is literally killing me.

My mother is now my proxy --- just in case --- but it's mostly just me running around making appointments and whatnot. Zer0

What is your sleep like? I have chronic insomnia, non-restorative sleep, and hyper-arousal, where I wake up every 1-2 hours. I basically wake up right during REM and therefore never get any actual sleep. I have a rheumatologist appointment next week and am not really sure what to bring her --- except my laundry list of symptoms. Some of them subsided but the big ones are gastroparesis, sleep disorder, pains in calves, minor fasciculations, heat intolerance and inability to perspire normally. Hopefully you get the answers you need. And eventually the treatment. My PCP still thinks it's psychological and my neurologist gave up on me entirely. Something is wrong in my system(s) and I just want answers and some relief if possible. Best, Zer0

All good suggestions. I'll look into all of that right away. I still have a few appointments coming up plus switching my neurologist. I am in the US and there are autonomic centers in Boston. So trying to get to those places. I know I don't have POTS but something is truly amiss. I have a history of depression and anxiety but I just know it's not that. If those caused all these symptoms --- I would get down on my hands and knees and thank Zeus, because then I know it could be managed with some degree of ease. But this seems more nebulous; the symptoms less easy to merely pin on the mental. My doctors are total incompetents. They're lazy, ignorant., and even when presented with new information re: dysautonomia, they shrug their shoulders and defer to their own pathetic (in)expertise. The most frustrating part is them not listening to me, the patient, as if their degrees make them gods incapable of hearing the audible cries from their lowly subjects (us). Thanks for the suggestions though. Best, Zer0

I have a rheumatologist appointment in 2 weeks. My doctors thus far have said this is all in "the brain" and are leaving it up to my psychiatrists. I can't understand why they won't even test me or consider my concerns. They keep telling me my symptoms don't fit this or that disease. I"m beside myself and at the point of giving up.

My understanding is that it could help factor in a co-existing condition to it.

Yeah. I'm dumping the doctors who insist it's purely psychological. They're absolutely wrong, I feel. How is that they can run zero tests and come to that conclusion yet when I ask for tests they just smugly shake their heads and say "Nope. Waste of time." ? It's absurd. I'm going absolutely out of my d*** mind. I've never been so enraged and beside myself. No one is listening to me and no one will even look at the literature I bring them, to show to their own ignorant faces --- like pages from "The Dysautonomia Project." They're so ignorant. So very ignorant. Zer0

I see. Well. I have a rheumatologist appointment in exactly 2 weeks. I'm scheduling an end-around my PCP. I can just log-in to my patient portal and schedule an appointment with another doctor for lab work. So that's what I'm going to do. Mine were on my hands and feet. They originally thought it was hand, foot and mouth. Then they thought it was syphilis. I think I vaguely recall getting some on my chest and abdomen. These doctors are so influenced by other factors --- especially their own biases --- that it's a wonder anyone ever gets healthy in their care. I broke down in his office because I told him my life has been ruined and devastated by this. He still tried to get me to focus ONLY on the psychological component. They don't seem to get it: I"m psychologically defeated and disturbed because a.) my unexplained symptoms and b.) my lack of care by so-called care professionals. Thanks for your feedback. Zer0

Out of curiosity, did you red spots go away? And where did you get them?

I'm not sure what those would be. I answered 0 to all of their queries: "On a scale of 1-10, do you feel dizzy?" "On a scale of 1-10, do you feel nauseous?" "One a scale of 1-10, do you feel on the verge of passing out?" "On the scale of 1-10, do you feel flush, hot, etc?" I forgot the last question, but it was basically the same, 0. The only symptoms I had were the ones I've been having: gastroparesis, fasciculations (twitching), issues with perspiration, sleep disorder, etc. But none of that is surely going to show up on a Tilt Table Test. I have no issues with BP or HR. I take it from time to time now and it's never out of bounds. I took it last night and it was 72 sitting and 72 standing. 130/80 both times, basically. My question, though, is if the tilt table test itself can simply rule out dysautonomia ipso facto? Thank you for your concern. Zer0

This has probably been answered before --- but I was at my PCP today, trying to get an ANA test, but was rebutted because they told me dysautonomia --- and my symptoms --- rule out whatever I was worried about. How? Because a normal tilt table test absolutely means I don't have dysautonomia (and that my constellation of symptoms don't necessarily point to any of the co-existing conditions). Is this true? Basically, his argument was: "The tilt table test can't prove what kind of dysautonomia you have but can rule it out entirely." Again --- is this true? Thanks in advance. I'm beside myself. I can't get these doctors to listen to me. They keep telling me it's all in my head. It's maddening. Zer0

I waited 2 hours to see my doctor today to only again tell me 1.) my normal tilt table test = no dysautonomia and 2.) wouldn't give me an ANA test. I am so upset.

I’ll try anything at this point. As you can tell, it’s almost 4am here. My insomnia is so out of control.

I really hope you the best. I should probably get re-tested once I see my new neurologist. I also heard there were different tilt tests after reading the book The Dysautonomia Project. My biggest things right now are just lack of sleep, weird body temp things, dry eyes, some stomach dismotility. I was working two jobs and had to quit the primary one. There was no way to do it. I just took my HR standing and sitting and they were both 72.