zerohours000

2 hours ago, Always hoping said:

Your "other" symptoms are the same as mine.  I have also been told that my POTS came from a viral infection (mono) when I was 43 years old.  Unfortunately I wasn't diagnosed for 4 years, so I did get much worse before I started to get better.  I was actually getting slightly better by the time I figured it out.  Knowing that some people "outgrow" POTS, I asked a doctor what he thought about my chances.  His reply was that while the chances of a complete recovery was not the norm because of my age, but the fact that my body had begun on its own to "reset" itself was a good sign.  Since then I have corrected a severe lack of ferritin with iron infusions, take a small dose of flourdicortisone to replace aldosterone that my body doesn't produce and have modified my diet and other daily activities to manage my symptoms.  I am lucky that I can function almost at a "normal" level on most days.  It's a rocky road, but stay positive that you will get through it and things will get better.  Be well.

 

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

5 hours ago, WinterSown said:

I didn't faint. Most of don't faint. It's all about your previous test results, what you say and how you act, and what the doctor and technicians observe. I did not faint, didn't even get nauseous. I got a bit anxious and lightheaded but that was it. My EP asked the right questions--What makes it feel better? I go lie down. Bingo! That, and everything else they had on me, built a diagnosis.

 

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

On 5/20/2018 at 12:21 AM, smm2197 said:

Hello all,

I am a 20 year old male with a confirmed diagnosis of POTS and SFN in my legs (biopsy proven). Other than SFN, there seems to be nothing else contributing to my dysautonomia. Doctors seem somewhat baffled as to how I developed SFN, however I did receive the Gardasil vaccine. However, my presentation of symptoms seems to differ from a lot of people on here so I am reaching out to see if anybody is similar to me? Upon standing, I do get tachycardia and meet the POTS criteria briefly, but then my heart rate will actually start to regulate and go back down to baseline when it hits around 110 bpm. My blood pressure also seems to rise upon standing, it will rarely drop.  As stated above, I also do have SFN but I have never experienced pain, numbness, tingling, or loss of sensation like most with SFN do. I am by no means complaining about this either, it just doesn't make sense to me! It doesn't make sense either how my tachycardia and blood pressure seem so controlled yet I am still run down with lightheadedness, tinnitus, brain fog, and fatigue! Does anybody else have a POTS presentation similar to mine? 

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

26 minutes ago, Pistol said:

Many people have dysautonomia and function well, although they have to take certain measures to not be affected too much. Others are completely disabled ( according to current studies about 25 % of POTS patients ). There are people who only have symptoms when triggered ( such as illness, surgery, pregnancy, stress ) and even some who only have symptoms once and then improve on their own. Yes - dysautonomia is usually something that is there for the rest of your life, but it is not a life sentence. It can be very mild - and even rarely felt - or life-altering. It all depends, it can be different for every person. There are many people who live just fine with dysautonomia, using the many ways of dealing with the symptoms, not being all that much affected. Only one thing do we have in common : limitations. Some more, some less. On this forum usually you see posts from people that are currently symptomatic, you rarely hear from the ones who are well. So - please do not be discouraged - it is not a life-threatening illness. 

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

1 hour ago, Pistol said:

@zerohours000 Hey - to answer your question in your earlier post - I don't know how to cut-and-paste the quotes, sorry - : yes, I am on disability. And NOOO! You do not want to go there, you do NOT want to stay home and be useless because you do NOT GET to do what you want, at all!!! You want to fight this to the end, with all teeth and claws bared. Listen to your body and take the docs with a grain of salt, unless you are very comfortable with your doc. There is a lot of misunderstanding about POTS in the medical community. You are right to question your doc, but PLEASE do not give in to the notion that you have to be disabled. Most people with dysautonomia can lead a very fruitful life. 

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

14 hours ago, WinterSown said:

Your doctors will discuss with you ways for you to keep active in your life. Dysautonomia is life changing but it doesn't have to be soul crushing too. I have a wonderful team of doctors that work collectively to improve my life--a cardiologist, an electrophysiologist, a neurologist, and a DPT--a physical therapy doctor, and there's a primary too but he defers to the cardiologist. The cardiologist seems more to work on my entire person and get my body as strong and healthy as is possible to withstand my  worse symptoms, he is all about nutrition and healthy living. I have swinging symptoms and he wants me to achieve balance, physically and in my inner self; the heart, mind, body and soul are all connected. The EP has been knocking down my drugs with the hope of me taking as few as possible some day. It's been micro-management  as he slowly and carefully reduces the doses as I handle the changes. The neuro helps get me out of the fog with cognitive and creative therapy--I love her, she let me create my own self-adaptive neurotherapy program which has been excellent for fog blasting. I read non-fiction, I make things with my hands, I draw and take photographs and have a new hobby of collecting used cookbooks and making new recipes out of them; I love all of that and that's the key--learn more about what you love and don't give up doing what you love doing, just learn to do it differently which stimulates your brain.  I still have some really bad days but the in-between times are longer and I get out of deep fog faster. I go to PT twice a week for balance, gait and strength training--I don't lift weights but I am now strong enough to support my own weight if I think I am going to feint and collapse--I can endure so much more, so much better. I've been in PT for over a year<  i'll keep going as long as I keep getting renewals because the exercise makes me feel better. The neuro said I don't look like a ghost anymore, I have better perfusion now.  DINET's last newsletter has the article I wrote about my therapy, it's called Walking Out of the Fog. 

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

2 hours ago, RecipeForDisaster said:

I wonder if you see Dr. Novak because I am also treated in Boston and he told me he had another patient just like me (a woman from Hawaii) who he never did figure out. I appreciate his honesty but it was not inspiring! I also have a non-specific diagnosis and am not sure about it, but I am fairly certain it isn't POTS. I'm in my 30s too but have been sick for a long, long time. I passed out in my early teens "for no reason" and honestly thought it was normal.

 

I have horrible sleep problems as well. I have had a lot of nights just like that, waking every hour, giving up at 2 or 3 am because getting back to sleep is just too hard to yield only another hour of sleep. Metoprolol has helped a bit because my pounding heart is the most difficult symptom to sleep through. You might look into sleep apnea testing-I have that and CPAP has helped somewhat.

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

1 hour ago, Pistol said:

I just realized something: when I first got sick I fought my symptoms and was constantly doing the OPPOSITE of what my body needed. I was passing out all over the place. In those years I could not sleep AT ALL! But since I am disabled and homebound and less active ( actually quite useless ) I sleep like a baby. Whenever I do stress myself from overdoing it I go back to not sleeping. It's almost as if when I push myself the ANS goes into overdrive and when I don't do anything it's OK. Like a sleeping dragon! --- Sorry - just a thought. 

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

2 hours ago, p8d said:

I,too, am post-viral onset.  I was fine one day, got the stomach flu and have never been the same since.  I can tell you the hour my autonomic nervous system broke.  I had no idea what was wrong just that something was seriously wrong.  I found a group of dysautonomia specialists in my area after six months of seeing every specialist around.  The importance of that cannot be stressed enough.   After three years and some very serious issues I still am housebound but am much stronger.  I didn’t sleep well for 18 months, very similar to what you describe.  I had a consult with a different autonomic specialist (I am extremely lucky to have two in my city) and he suggested sleep was vital and prescribed a couple of different drugs before we hit on Remeron. That has helped tremendously.  He also suggested water treadmill physical therapy which also helped a lot.  I now do physical therapy once a week for strength, balance and endurance.  I have been doing that for 20 months.  I can’t say enough about how that helps but I still can’t be upright for more than an hour and then only once in awhile but that’s a vast improvement.  Like you, at the beginning I was never dizzy, I have never fainted (3.5 years) but had a positive TTT.  I still have trouble finding meds that help because as soon as I find a good combination either one or the other stops working or the weather changes or.. As Wintersown suggests, the stronger you the better able to handle these changes. Two years after I was diagnosed I was also diagnosed with an autoimmune disease and treating that has helped with the fatigue and joint pain etc.  Dysautonomia is a chronic illness and requires re-thinking lifestyle and treatments.  A good thing to do is document all orthostatic BP/HR readings, drugs/supplements taken, activities and symptoms.  Records taken a few times a day will help your Drs figure out some things.   I also suggest reading The Dysautonomia Project, it really explains things well and has chapters devoted to lay people and medical professionals.  There is no known cause and treating symptoms is all that can be done now but research continues and that offers hope.  What you describe many of us have experienced, you are not alone and this is a great place for understanding and questions.

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