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Do I have dysautonomia?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Do I have dysautonomia?

I went to the cardiologist today with the following symptoms: lightheadedness, low heart rate, low blood pressure, fatigue.
This has been going on since April and I finally went to my family doctor about it in August. Since then, I have had two holter monitors which showed my rates in the 40s-60s and up to 150 with exercise. I used to exercise regularly 3-4 times a week for 30 minutes. Now I am lucky if I exercise 2-3 due to I am always tired. My blood pressure is good and normally runs borderline 90/60, and sometimes higher. It has been as low as 74/56, but I don't think that happens often.

I consider myself very healthy but do not think it is normal to feel tired and sluggish all of the time. The nurse practictioner mentioned a possible autonomic disorder and ordered a tilt test and echo next week.  Has anyone else experienced these same symptoms?
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You will know much more after your tilt table test and echo. The tilt test, done by an experienced electrophysiologist who is looking for dysautonomia, is the best way to know for sure if you have an autonomic dysfunction.

Have you already had umpteen blood tests to find a cause,- iron, electrolytes, adrenal hormones, etc?
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Avatar_f_tn
I forgot to add that a tilt test can help pinpoint your diagnosis depending on your body's response to the tilt. For instance, a Neurocardiogenic response is different from what is seen in Postural Tachycardia Syndrome, and purely orthostatic hypotension has a different presentation on tilt than POTS or Neuro. A good electrophysiologist will know the differences.
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Avatar_f_tn
Thank you for your post! I have had blood tests and they came back normal. I hope to find out something after tomorrow.
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1841454_tn?1319830387
i have a long history of mysterious weird symptoms that nobody has seemed to figure out my entire life.  
tired and exhausted when exercising-passing out on numerous occasions (but not all the time)- history of low blood pressure and at times anemic.
most recently i have had strange bouts with chronic diarrhea and food not digesting as it moves thru my system too quickly (been struggling with this since june) and then getting dehydrated and feeling worse and worse.
i stopped eating gluten and that didnt make a difference-now stopped diary and that helps slightly but not completely.  feel lightheaded and like i'm gonna pass out alot and it's like i'm being dropped down in an elevator.

just had a tilt table test done this past monday- everything was pretty ok until the medicine they put in the iv to increase my heart rate- after that, it was all over -i  felt REALLY crappy and then passed out.  and then after i woke up my hands and feet were all tight and felt like i wasnt able to move them-like they were cemented stiff. the staff said everything was ok and that alot of people have experienced the same thing with the tilt table testing.
boy-it was horrible !

my cardio doc said the next day that i MAY have a "mild case of pots".
is this possible?? to MAYBE have a mild case of pots?
a heart echo was done after but i dont have the results back from that yet.

i'm new to all of this,  but my thought is that you either have pots or you dont?  
can anyone shed more light on this for me?
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Avatar_f_tn
If your doctor had the tilt table results back and was saying that you MAY have a mild case of POTS meaning he was unsure, that might mean the test came back not entirely positive but showing signs of it. I had to do two tests and the techs that read them didn't say "HAS POTS" it just said possible diagnosis but thankfully my doctors were smart enough to know from my day to day activities and their own observations plus the test results to diagnose and treat me for it.
My point being however it is a very specific heart disorder usually within another disorder (dysautonomia) so your doctor could be waiting for the other test results and ruling out anything else. On the other hand, I had three doctors who pretty much didn't need the test to tell me that I had it so make sure you are comfortable with your doctor that is always key.
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1841454_tn?1319830387
thanks so much for your message!

when they did the tilt table they gave me isopreternol (?) to make my heart rate gradually and slowly increase as if i was exercising.
well it was ok at first then it all the sudden took off and i felt like i was dropped down in an elevator and really sick feeling then passed out- next thing i knew i woke up and my hands and feet felt tight and like cement blocks and i was shaking and freezing cold.
i'm not sure what my heart rate increased to -the only number i remember hearing the doc say was 160?
but he did say that my blood pressure was "none existent" during this event.
im thinking that when that sensation like im falling down an elevator is happening thats when my blood pressure dropped?

i did ok the first 15 minutes of being upright on the table other than i could feel my hands and feet puffing up and feeling funny and i really wanted to move around and adjust them.
it wasnt until they gave me the stuff in the iv that things went crazy.

looking back it makes sense to me that when my heart rate raises (walking/exercising/going up stairs) i feel lightheaded and woozy and then if i go sit/lay down and it seems to subside.  

and there have been episodes throughout my life that i have passed out for seemingly no reason-the last time i actually fainted  was about 1 1/2 yrs ago when i donated plasma.   seemed like i always got sick after that and after i passed out the last time i quit all together.



i did have a holter monitor on back  quite a few years ago-and nothing very remarkable was found.  
this past month i had a king of hearts monitor on and there were a few things picked up on that but nothing that "alarming".

many years back i was diagnosed with migraines- my neurologist said when my hands and feet feel tingly and i get lightheaded it's just an aura to a migraine- but when i told him that i do not get a headache afterwards- then he said it's "atypical migraine".  
alrighty then....

i had a hysterectomy back when i was 29 (i'm now 43) and have been off any hormone replacement therapy since april or may of this year.

i have started doctoring with a gi now and am set for a colonoscopy next month.  
seems like my biggest issues since this past june are after i have a bowel movement-shaky, weak, lightheaded, nauseated.

it's like a vicious cycle-if i go to the bathroom then all these symptoms happen, then i'm wiped out and have to lay down and put my feet up in order to feel better and if i dont lay down seems like it takes the whole day to recover from it.   and then i'm starving afterwards and if my guts are still "turned upside down" it starts all over again.  very frustrating.

i did have a ct of my abdomen with and without contrast (which i had to sit across from the bathroom to drink the contrast solution because got the diarrhea like crazy 5 minutes into starting to drink it) and turns out the contrast went thru me too fast ....ya think !?

then i went in to have a series of small bowel xrays to watch things go thru my system and had to drink the thick white stuff.
i told the radiologist that stuff goes thru me quickly- she nodded and was like yeah yeah yeah.  
well they got only 1 xray out of the deal because it had already went thru my system.


so this cardio/electrophysiologist doc is not my favorite- thru this whole thing he kept saying "oh girl, you dont want to have pots"  i'm like duh! of course i dont- i dont want anything except for you to tell me what this is and why it's happening to me!  

he says i have a mild case of pots- and that i cant be on beta blockers because my blood pressure is already too low and then when i have these spells it drops even more- so i should just eat more salt and drink more water and come back in 6 months to see him again.....total brush off.

so who knows-is it actually pots? orthostatic intolerance? vagus nerve issues? just in my head??

im actually very glad i did pass out for that deal- the docs have been hinting that  it's all in my head or panic/anxiety attacks.

i dont know- thinking i should try and get in at the mayo clinic in rochester -its only like 2 hrs away from where i live- maybe they can figure this out ??

i say thank god for this site-and everyone on here !!
it's the only thing that DOESNT make me feel like i'm crazy....

thanks soooo much for listening :)
amy




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Avatar_f_tn
I did the tilt test last week and I did pass out after they gave me nitro. They said I have neurocardiogenic syncope and I need to increase my fluids and salt intake. He didn't seem concerned so if it is not life threatening then that is good! I go back to the doctor in 6 weeks. I increased my fluids before the test so by increasing them more I do not feel that is helping. I am not sure what other remedies are out there. I still exercise but I am more cautious because I don't want to pass out. I am guessing this is just something I have to deal with!
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875426_tn?1325532016
I passed out too after nitro, but I had never fainted before and haven't since and I was diagnosed with P.O.T.S..  Did you ever faint prior to the testing or have you fainted since the testing?  Your heart rate is going up when you exercise, according to what you mentioned.  It was explained to me that with P.O.T.S., the heart races in order to prevent me from passing out.  

I was told to eat more salt but no doctor told me how much.  You don't want to get dehydrated by drinking too little, but on the other hand you don't want to drink too much either.  Occasionally, my urine is really dilute and I start feeling a certain way, so I shake some salt on my hand and eat it.  Did they recommend compression stockings to you?  
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No, I have never passed out prior to the tilt test, but I have felt faint since then. I am drinking at least 16 oz of a sports drink everyday and at least 64 oz of water. I still have my caffeine but I am watching how much. They have not mentioned compression stockings, but I probably need to increase my salt intake more.
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875426_tn?1325532016
When you calculate in things like milk with your cereal, liquid in your soup, etc., if you have those sorts of things, I'm thinking you may be overloading a bit on liquids, with that 10 eight ounce glasses worth daily.  And if you are drinking gatorade, I recommend you brush your teeth after, because I've heard that stuff is hard on teeth enamel.

  You may want to ask about the compression stockings- I believe they help some people, though I found them too troublesome to put on, but only after shelling out a lot of money for a pair of Jobst stockings.  With how low your blood pressure is, it sounds like it wouldn't hurt to up the salt.  With me, I can get an over-compensation with standing and my blood pressure can spike.  So, I have to be careful- I eat salt when my urine is dilute and I feel a certain kind of crummy way, but I shouldn't eat too much, because that has given me a migraine before.  

Since you never passed out before the tilt table test and have felt faint, but it sounds like not fainted since then, I question the diagnosis of NCS and would recommend getting a second opinion from a doctor that is well versed in dysautonomia.    Because NCS is neurocardiogenic syncope, which has fainting in its very name!  And, while some faint who have P.O.T.S., others don't.  

Additionally, you mentioned feeling tired and sluggish.  Besides mentioning a possible autonomic disorder, did the nurse practicioner order a ferritin (iron stores) and iron saturation percentage level on you to be sure you are not iron deficient?  Did she check your thyroid function?  How about your B 12 level?  I hope so.  If not, please do ask about getting these checked.  And a person can be iron deficient before it makes any thing in a complete blood count go outside normal range, so they should order iron testing, not just a CBC.
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Thank you for the information! When I go back I will ask about the iron testing.

What exactly is POTS? How is that diagnosed? I have more bradycardia than tachycardia, or at least that is what the holter showed.

I definitely agree I probably need to increase my salt since I don't each much. I thought low salt intake was healthy lol!
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875426_tn?1325532016
POTS is postural orthostatic tachycardia syndrome.  If your heart rate goes up 30+ beats per minute with standing, it is an indicator of having it.  It is typically diagnosed using a tilt table.  The other criteria I personally never got tested for, and that is a standing plasma norepinephrine of 600 pg/ml (3.5 nM).

  Since you have more bradycardia than tachycardia, perhaps that is why they decided on a diagnosis of NCS, but in my non-professional opinion, I wouldn't think one faint after nitro on a tilt table is sufficient to diagnose someone with it.  I would think that fainting under normal conditions as well should be a criteria for that diagnosis.

I know they try to tell you low salt intake is healthy, but a cardiologist advised me where this is not what he normally would tell his patients, to eat pizza (evidently high in salt)!

What kind of ejection fraction did you have with an echocardiogram?  Did they think you had the kind of bradycardia that warranted considering a pacemaker?  
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I'm not sure. They didn't seem too concerned that I would need a pacemaker. The holter recorded my heartrate in the lower 40s, but I think that was while I was sleeping. My heartrate dropped to 37 when I passed out during the tilt test.
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875426_tn?1325532016
Perhaps you could get a copy of your echocardiogram results?  
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612876_tn?1355518095
I would ask your doctor to be *specific* about how much water and salt intake they think would be recommended for you to start with, and then they can track your signs/symptoms and have you increase or decrease from there as they and you feel is appropriate based on how you are doing.  80 oz (64 water + 16 sports drink) of fluids doesn't sound like too much off the top of my head because I've personally been put on a 4 L (1L is approx 32 fl oz, so 4L is 128 fl oz) fluid-loading regimen, and 5000 mg sodium/day salt-loading (that's approx. 2 tsp. salt) regimen.  I've heard of other patients being put on fluid regimens as high as 5L/day orally.  

I do sometimes come up a bit shy of my 4L for the day, but as LivingInHope correctly pointed out, you do get fluids from some places that you don't ordinarily think of.  If you're "officially" counting fluids (i.e. how the nurses in the hospital count them), anything that is liquid at room temperature goes towards your "ins" (fluid intake) ... that includes broth, milk (even if it's over cereal), jello (don't bother trying to tell them that once it "gels," it won't turn liquid again even at room temperature ... your nurse will not be swayed by your scientific arguments ... lol), popsicles, etc.  

Sorry it took me so long to reply to your post.  I've been bopping in and out as I'm able.  It looks like you've been in good hands with our community in the meantime.  :-)

I can't remember if I've welcomed you already, so if not ... Welcome to our community!!
Heiferly.
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Hi Heiferly, good to have you back here! I hope things are going well for you now.  I have a question. Do you know what your serum sodium level is on 4 L water and 5000 mg of salt?  My son recently started Florinef, he's drinking 3 L a day, and has increased salt intake with foods and salty broth. After six weeks his serum sodium went from 137 (which is what it normally always was) up to 141. His liquid "output" seems to have increased along with input. Shouldn't the fludrocortisone reduce daily output, by increasing retention of sodium and fluids?

I'm wondering how much salt he can safely consume in a day. He would never swallow a salt tablet so he must rely on foods.
This hasn't helped with his orthostatic hypotension at all yet, but he's only taking a .1 dose of fludro once daily. I would like his doc to work him up to a higher dose, but I want to be careful not to push his serum sodium out of range.
Unfortunately, I don't think the fludro is the answer to his problem, but he did test very low aldosterone, twice, before starting fludro, so we'll see.

Welcome back!
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612876_tn?1355518095
My sodium hit a one-time low (flagged by the lab as low but just a HAIR out of normal range) of 135 in 2010 (whilst on fludro) ... otherwise it seemed to vary between 136-142.  From what I can see, it was 141 before the salt and fluid loading with the fludrocortisone.  So, from the looks of it, I would *guess* that fluctuations in my serum sodium levels had more to do with my hypovolemia/dehydration status at any given point in time than the fludrocortisone and salt loading, but that's just a guess.  (I'm looking at numbers over a span of about 5 years.)

I would talk to the doc about the increased output.  They may want to do a 24 hour urine catch to see how much his ins/outs are, or something like that.  I don't know exactly how much my urine output compares to before I got sick (enough time has passed, that I just frankly can't remember to give you honest feedback on that), but I often note (surprisingly) that I urinate less frequently than my same-age peers who drink less fluids than I do.  Of the two people I know (family members) intimately enough to have compared such things, I know that my output was roughly equal on a 24 hour urine catch, even though I'm quite certain my intake is higher than theirs.  My output is (shockingly, to me) lower than my intake, but you have to take into account that you lose fluids through respiration, sweat, stool, vomit, etc., as well as through urine; one GP I formerly had and I used to joke that considering my hypohydrosis (near inability to sweat), constipation, and low urine output, the only explanation was that I was exhaling 99% humidity at an alarming rate or I was storing all my fluids in a secret bodily compartment like a camel or something.  All joking aside, figuring out the fluid handling of a person with dysautonomia is not a simple proposition.  The aldosterone testing and giving the fludrocortisone a shot is a good start, though.  Remember that the fludro needs salt to work, so he really may need to consume what seems (compared to normal dietary recommendations) like an unhealthy amount of sodium.  If you just take the fludrocortisone and increase fluids without increasing sodium, the fludrocortisone does not have the necessary "tools" to cause retention of the fluids; this *could* be the culprit behind the increased output if your son isn't getting enough sodium, but you'll need to confer with his physician to find out for certain.  It will probably help if you keep a food journal for a few days and track exactly how much sodium he is getting so the Dr. can determine if it's sufficient for the fludrocortisone to work or not.
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  Okay, thanks for your ideas. You're right, there's nuthin' simple about regulating fluid balance in dysautonomia!  I think my son's endocrinologist wants very much to handle his symptoms in the most conservative ways, and is only replacing missing hormones, doing regular blood tests, and hoping something improves someday. He relies too heavily on blood test results for treatment, and has never asked for a urine measurement in the two years my son has been his patient.  It seems no matter what symptoms pop up, he just goes by the blood tests for treatment.
The pediatrician is no help either. They don't seem to think looking at the urine is helpful in any way with this!

I do think the kid needs to increase both sodium and potassium intake. I'll see if I can get him to improve on that.
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612876_tn?1355518095
If you're ever at the hospital or doc's office and think of it, ask for a "hat."  They'll usually give you one for free (it's just a flimsy disposable plastic thing that fits over the toilet bowl between the rim and the seat).  Gross as it sounds, I steal mine from the hospital whenever I'm there by washing them out in the bathroom and bagging them in one of the hospital plastic bags they have for you to take your stuff home in, so I have a couple at home.  They have measuring lines inside them to measure your urine output; you just measure it when you go each time, then dump it out.  You can keep track of it on paper and add up how much output there is over 24 hours.  It would at least let you get an idea yourself of what his output is and tell the docs; whether they place any weight on that information or act on it could be another matter, but it can't hurt to at least find out.

Potato skins are a better source of potassium than bananas, and you can hide a LOT of salt in a potato, depending on how you serve it.  So if your son is willing to eat a potato with the skin on it, that's one way to get potassium and sodium at once.  (See, those "loaded" potato skin appetizers that are so unhealthy for everyone else are actually healthy for us!!  Muhahahahahaha!!!!)
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Avatar_f_tn
Yes I have these same symptoms of being light headed, having a low heart rate,  low blood pressure, and fatigue. Sometimes though I also have nausea along with these symptoms. My cardiologist thought I was crazy and faking it until he did a stress test and my BP dropped 40 points. Just don't know what to try anymore.

Katy 174
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Avatar_f_tn
Hello everyone! I'm sorry I have not been on here in a while! Since my post I have been doing ok although I am not exercising like I used to. I still have symptoms but salt intake seems to help. If I begin to feel lightheaded I just sit down. I go back to the doctor in December. The one thing I have noticed is I have indigestion! I have not had indigestion since before my gallbladder surgery in 2007. Is this a symptom of NCS or any other dysautonomia?  
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875426_tn?1325532016
Dysautonomia can touch many aspects of health, digestive health being one of them.  (See private message for a long list.)  I

hope you are able to do some exercise of some kind because otherwise, deconditioning can make symptoms even worse.  (Do you have a recumbant bike you could use or perhaps you could walk around the house at a leisurely pace for a set period of time?)
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Thank you for your post! I have videos at I home I use to work out, but 20 minutes is about all I can tolerate. :(  
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875426_tn?1325532016
Well, if you feel like you are out of shape and want to step things up but are looking for an idea on how to do that when you you're only tolerating the twenty minutes, you might try something like this: splitting up your exercise.  Twenty minutes at your usual time with your video and another 10 minutes where you take a leisurely walk around the house at a different time of day (as long as it isn't too late in the evening, which can interfere with getting to sleep.
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Thanks!
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