Do I have dysautonomia?

[c0728]

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?

[c0728]

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!

[ahart]

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

[TrishDoll]

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.

[ahart]

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?

[c0728]

Thank you for your post! I have had blood tests and they came back normal. I hope to find out something after tomorrow.

[enzymelover]

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.