zerohours000

I was diagnosed within 1 month --- so hopefully that's good? (mind you, I had to deal with the same b.s. of "oh, you're perfectly healthy; here's some xanax or zoloft you crazy person") Did you have to get prescriptions for the flourdicortisone? I suppose my age also presents a barrier as well (33), in that most of the recoveries I've heard are from young adolescents. My days aren't too bad. I did have a massive panic attack yesterday --- which was awful because I've had panic attacks before but not with a compromised nervous system; my legs looked like a player piano in that I could see every little muscle twitching and twanging. Anyways, I was told my ferritin levels were ok (I think). The only thing I'm deficient in that I know of is vitamin D, so I take the 50,000 units of it once per week. Has anyone else had changes in the coloration in their nails? For the longest time mine were about half-red and the little half moons all but disappeared. But the red is starting to go away a little bit. I know blend all my vegetables and fruits. And I basically don't eat anything but protein and absolutely zero rice, noodles, pastas, etc. Thanks, Zer0

Awesome. I'll keep that in mind. Should have my TTT results back this week. Zer0

Just to clarify, I'm not sure which dysautonomia I have. I've no actual confirmation on the POTS. My neuro only suspected it after our first visit. My TTT is pending but I'll be honest, I don't think I get the normal symptoms for it. I've never felt close to passing out nor have I felt dizzy during the test itself. I answered "0" for all the questions she asked me ("On a scale from 0 to 10....How nauseous do you feel?" etc). But thanks for the words of encouragement. Zer0

Hey. I'm 33m and I was told I (might, pending full TTT results) POTS and SFN (though no biopsy; just told I have it). I at first didn't have the BP issues. However, this is was how I was diagnosed: my neuro took my BP sitting and standing and it met the criteria. I thought I had it under control (as of only last week she said my BP had "stabilized") but I've been getting worse, in my opinion, ever since. My sleep has worsened (can only get 1 hour sleep at a time --- so 7-8 times of 1 hour basically per night). My heart does beat fast after I get up --- especially after the 1 hour naps --- and I think even a bit when I get up and so something. But here's where we're similar: it doesn't get out of line where I come close to fainting or getting dizzy. But like said above, it could just be presenting differently on a scenario to scenario basis. I feel like it's been something new each week with me with no real periods of getting better. I hope it's not progressive but we'll see. Good luck. Zer0

Thanks for responding. I suppose mine hasn't been too "life altering" (yet). For example, I'm working right now (literally as I'm responding to this; thanks goodness just behind a desk). However, I did have to quit a primary job and thus primary source of income. Right now I'm still in the early stages of finding out what's essentially wrong with me. I suppose I jumped the gun a bit because I haven't even had my TTT results back yet. Part of me thinks POTS is not in the cards because I don't pass out, don't get tachycardia, don't get dizzy, and generally standing up or not standing up has no real affect one me. Although, I must say, the past few days has challenged that notion, as I was having a pounding heart (which I foolishly didn't record with my monitor) and was even slightly nauseous (which I chalked up to taking one too many Trazadones). Here's a question: Does getting diagnosed relatively early have a better outcome? For instance, I got kind of lucky, apparently, in that the average diagnosis period is some like 6 years, while 6 months is considered "early." I went to the ER one day with weird kind of slowness in my left hand I was confused about. They ran an MRI --- clean btw --- but was referred to a neurologist in the same hospital (shes' actually listen on the specialists on this very website --- Dr. Hohler). She diagnosed me almost instantaneously with POTS and perhaps small fiber neuropathy. But she had the oddest optimism about it all --- saying, since it was post-infectious, and because I was so young, that I could very well have a good chance to either "recover' or at least get control of the symptoms. But I'm confused precisely because I feel I've gotten worse --- no thanks to my anxiety and depression and lack of sleep --- but also because most people tend to present the classic POTS symptoms while I sort of have the "other" symptoms --- gastric issues, blurred vision (if trying to concentrate on a screen for example), heat intolerance, wobbly legs or vertigo, sleep disorder, and lack of perspiration, etc. My other issue is I haven no clue where to start. Having a neurologist who knew what this was seemed like a blessing at the time but now it seems like I'm just sort of waiting for more bad sh*t to arise, rather than on my way to at least attempting to get well (or as well as I can). I'll admit. I've had a weird perspective change. I was always afraid of death and dying. But this has been somewhat refreshing in that it has made be regain a little focus on what was important to me and what I'd like to do with however many years I have left, whether 1, 5, or 50. It hasn't convinced me I have any more importance in this world than I did yesterday but it's convincing me there is important things left to do in the world, even if they are just important to me. Zer0

I was reading a few member stories and came across this re: dysautonomia: "I have also been told that this condition can either be a mild to moderate inconvenience in life or progressive and fatal. “No one really knows,” is what I am told." Is this technically true? I mean. Once you have dysautonomia are you just on a constant spectrum of mild, progressive, to fatal? Meaning, it can become either at any time? For long-time sufferers, has this been the case? Am I, at 33, just waiting to eventually die of this? Or is that just for MSA? Zer0

I'll keep that in mind. Because some say "don't push your body to do what it can't now" but point taken. Honestly, I'm just mostly depressed. I was winded just walking up and down a few flights of stairs just now. Zer0

Yeah. I'm not sure why she said any of that to me. I've pestered her about what comes at the end of this magical 6 months. But she just keeps saying "we're looking for the best possible outcome." Based on what? She's seen me precisely twice. I just don't know how she can claim to be an autonomic specialist and make these pie in the sky claims on the one hand, and then be nebulous on the other when pressed for answers (even if there are not concrete answers --- I'd rather her just say just that: there are no concrete answers at this moment or in 6 months). Thanks for this. I'm still so new to this. I can almost taste what my old life was like and yet it's mostly just getting bitter in my mouth with the onset of this new life --- which I can't say is much life at all. Best, Zer0

I was a weed smoker for years so this is actually quite interesting. I can't touch the stuff now --- which makes me very sad because it was how I was dealing with my anxiety and depression sans pharmaceuticals. I literally used to love the stuff. My neuro said my dysautonomia is post-infection but I am trying to think outside the box a little because I once heard that sometimes, weed, if it's not cultivated properly, can get mold. And I often wonder if I had a bad batch (I only ever bought medical-grade weed) that had mold on it. My onset was literally overnight like yours. I can remember the day and hour I started feeling all of this, and the progression of symptoms that followed. I would say, however, I was under a lot of stress at that time --- I was commuting 2 hours a day each way to work through a series of buses and trains which nearly killed me. But I honestly don't have a clue what brought this all on. There doesn't seem to be a unifying marker or factor. Everyone's story seems to be different, although, I admit, stress does seem to be somewhat a factor in perhaps tipping everyone's system towards carnage. I'm new to all of this as well, literally only 3 months into the symptoms, and 1.5 months into a diagnosis. But it's felt like 3 years and 1.5 years! I can't believe it's only been 3 months (March 4, 2018) since I've felt this way. It truly feels like my whole life. Each day is simply awful --- and I'm only now sort or accepting/lamenting that I'll have to deal with this for life (pending this isn't something much worse). But we'll see. Hope you're doing better/would like to know of any updates. Best, Zer0

Thanks. I'll read it today. I guess it's so early in my diagnosis that I might not even had the full array of symptoms of certain things. I was diagnosed 1 month into having symptoms --- which is like 80% earlier than 99% of the people who have some autonomic disorder. So it's possible I haven't even felt the largest brunt of the storm. My neurologist has made weird comments like "it takes about 6 months for this to 'clear up'" before I could get back to baseline, but that seems disingenuous. I mean. Nothing I've read about dysautonomia "clears up." In fact, it appears to be chronic struggle for all involved on the spectrum. Happy all your maintenance is going well. I'm just so early into this I don't quite have my bearings or know where to start. Still haven't even got or done all the tests I need. I suppose there are many more doctor's appointments I need to go to first! Best, Zer0

Yes --- I am indeed now looking into sleep testing. I had one done maybe 10 years ago too --- and all it showed was I had almost nil for REM sleep. So I was already a poor sleeper, I guess. Now it feels like something much more nefarious at work, menacing my system. What I wouldn't do for 4 hours of refreshing sleep! Best, Zer0

Did you have to go on disability? It's not something I'm looking forward to but I've already lost one job and it looks like I might have to quit this one soon. The only good thing about this job is I actually live there --- as a Resident Assistant. The problem is, I get no sleep here and it requires a lot of energy I simply do not have. I'd gladly be "useless" if I could stay home and do things I want to do, but I don't even really have a home per se. Just sort of a drifter with family nearby. Thanks for replying, Zer0

Yes. I know the exact day and hour. I was on the phone with a co-worker, feeling actually quite wonderful about something the night before, and then I told her, hang on, I'm feeling very ill. And the next week was a mad blitz to ERs, Urgent Cares --- and I was inbetween insurances at the time! My neurologist is indeed an autonomic specialist but I'm losing faith in her. It's only been 3 months but I feel like things (especially days) move so slowly. I will definitely look into another autonomic specialist. Because the lack of sleep, or broken sleep, is killing me quite literally, and reeking havoc on my mental state (I had to quit my primary job). I've been keeping an ongoing sleep and symptoms tracker since day 1. So that is, yes, a great idea, as I've been able to give instant feedback to my doctors --- even though they're still hung up on the idea that this is "mental" (which just seems lazy to me. If that's the case, all diseases or illness could fall under mental/brain related). I haven't done my BP/HR in a while so maybe I'll start doing that again. Really, my biggest issue right now is I have little support system. I can't move back in with my mother and my father is in another state. I'll look into that book. Because I"m at wit's end about this all. Best, Zer0

Thanks. What do you mean by maintenance though? Has anything worked for you?

Yeah. I'm not sure I have POTS. I haven't received the TTT back yet but I don't have fainting, dizziness, and my BP seemed to stabilize after initial concerns from my neurologist. I will say that I was relatively "lucky" to be diagnosed with anything at all in about 1 month. My neuro was an autonomic specialists so she saw it right away, after me going through my litany of issues. I have heat intolerance, gastric issues, almost never perspire, twitching (especially in my right arm which has been going on two weeks now), depression, anxiety (which I've had before but I now consider secondary to the symptoms), some racing heart when waking, and probably the worst symptom: insomnia with frequent waking. I mean, I wake every single hour on the hour with a dry mouth and with absolutely zero refreshment from sleep. My dysautonomia seems to be from "post-infection" but from what I"m reading, this could mean a lot of things. I had a discussion with the chief of medicine at a hospital in Boston and he said there was a fair rise in these kinds of cases, especially in adult males --- like 30 to 50 --- in regards to this "post-infection." Now, I'm not sure what to make of that but all I know is that I was relatively fine one day and then the following weeks were me desperately trying to figure out what the h*** was going on with me. As far as I can tell, I can still do 'normalish' things. However, I do tire pretty quickly and am moving towards exercise intolerance. My depression and anxiety are not in check because I simultaneously am thinking I have lethal diseases. My neuro has reassured me I don't but it's difficult to accept anything since so much is unknown at this point.

Hi. I was just recently diagnosed with autonomic dysfunction --- although it is unclear which exactly it is. My neurologist seems to think post-infectious. Anyways, I'm 33 and this came totally out of the blue, as I was literally fine one day and then, another, I progressively seemed to accumulate many different symptoms. My tilt table test is still pending. However, as far as I can tell, I've no issue with fainting, dizziness, or syncope. Which is confusing, especially since my neurologist also thinks I have POTS. Does anyone else have POTS without those? Probably the worst for me is the lack of sleep. I literally sleep one hour at a time. So I'll go to bed around 12 am, say, and sleep initially from 12 to 2:30; then 2:30 to 3:30; 3:30-4:30 etc (and I keep meticulous notes on my sleep patterns.) I usually wake up with a dry mouth, which suggests I"m breathing through it, and usually my left sinus is blocked or dry as well. Has anyone else had this issue with their sleep, where it was this disrupted and fragmented? I'm a constant worrier so I'm afraid this is the worst form of dysautonomia (especially since POTS just seems so unlikely, given my lack of BP or HR issues). I'm desperately hoping it's not PAF or MSA. But I also heard from the chief of medicine that post-infectious autonomic dysfunction was actually on the rise in my area (Boston). And that he had a male, 45, with similar symptoms such as mine, and although he didn't make a "full recovery," after 8-9 months or so he stabilized and is now only left with some digestive issues (after a series of normal tilt table test, MRI, EMGs, etc). So if anyone can help elaborate or share their stories about this, I'd be glad to hear and share back. Thank you. Zer0