Dysautonomia (Autonomic Dysfunction) Community
Autonomic Dysfuntion... Finding out
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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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Autonomic Dysfuntion... Finding out

I think I have autonomic dysfuntion, I have been struggling with something since 2008. I have passed out several times since then was taken to ER in the past with a very rapid heart rate and they never gave me any answers then. Now my feet turn purple when I stand. I get vertigo sometimes, dizzy spells and morning are rough when I try to get out of bed, I get a horrible headache and everything tturns white, and chest hurts. Tired constantly, muscle aches...ect. I could go on and on. Does this sound like any of your alls symptoms? How did you guys find out you had this and where do you start with finding a diagnosis. And...after researching I am scared with what I am seeing on prognosis. What are your alls drs saying about a prognosis? THanks so much, Kristin
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875426 tn?1325532016
Welcome to the dysautonomia forum, Kristin!

A lot of what you describe sounds like it could be Postural Orthostatic Tachycardia Syndrome, though not all pass out with P.O.T.S. (abbreviation) and they should check you for Neurocardiogenic Syncope (N.C.S.) (a type of fainting).  These things are diagnosed typically by tilt table test, so that's the test to try to get.  

A standing plasma norepinephrine test might also be done for a P.O.T.S. diagnosis (though it wasn't done in my diagnosis by a doctor).

You can get the vision going white, chest pain, light-headed, increased heart rate with standing, worse in the morning, headaches worsening with standing, and blood pooling in your lower extremities- all of that with P.O.T.S..

I had an event holtor done and think it was through that and rapid pulses at doctor visits that they diagnosed me with I.S.T. (inappropriate sinus tachycardia.

I also had orthostatic blood pressures done and they thought they needed to push fluid- that I was dehydrated.

I had  testing for pheochromocytoma, a rare tumor which can cause rapid heart rate, spikes in blood pressure, headaches, and sweating- negative... plasma free metanephrines fasting blood test is supposed to be one of the best tests for ruling out that sort of tumor.

I was sent to an electrophysiologist, a cardiologist who conducted tilt table tests.  It was via tilt table test I was diagnosed with P.O.T.S..  It's generally not considered life-threatening and some people reportedly go into remission.  It is very rare that any one progresses into Pure Autonomic Failure who has P.O.T.S.- very rare.  No doctor even ever told me about PAF, but I ran across someone who had it who told me about it.   I have had I.S.T. and P.O.T.S. diagnosed for about 8 years and things are not a whole lot different now for me.  

About your vertigo- you might want to get some vestibular testing done at an E.N.T. doctor to make sure there isn't something going on with your inner ear, etc.- they may want to conduct some testing for that.  

They might also want to have you checked out with the headaches, light-headedness and vertigo with a neurologist.  

The muscle aches- make sure your potassium is not depleted (blood test) and have you ever been tested for fibromyalgia?  Have you found yourself in a deconditioned state exercise wise with these symptoms?

Tired constantly- while P.O.T.S. can make standing take a lot of energy, when you are tired constantly, be sure and have the doctor rule out anemia and iron deficiency anemia with a complete blood count (CBC) and an iron panel, including ferritin and iron saturation percentage. (Iron deficiency can also cause headache, light-headedness and rapid heart rate).  

Also, make sure they check your thyroid function to be sure it's not sluggish and that your vitamin B 12 is not low.

You want to make sure you are well hydrated when you have this type of problem also.  Have you tried drinking G2, wearing compression stockings, using a shower chair, sitting on the edge of the bed for a little bit before popping out of bed in the morning, etc.?
612876 tn?1355518095
Hello.  I see you have made several posts on our forum asking about whether your symptoms sound like dysautonomia to us, and especially about prognosis. LivinginHope has given you a pretty comprehensive picture of symptom analysis and diagnosis of dysautonomia, so I mainly wanted to address your question about prognosis.

I have addressed this subject at length in the past. I hope you will find this helpful:


If you use the search box on the page that says "search this community," you can search our archive of discussions here in the Dysautonomia patient forum. This may allow you to find more in-depth discussion of specific symptoms, diagnostic tests, or treatments; however, I will caution you that the archived discussions are best used for research purposes only. If you have any comment/questions, please start a new thread by clicking the "post a question" button at the top of the page rather than posting a comment at the bottom of an old thread. If you want to reference the thread you can copy and paste the URL from your browser into the new post, or just quote the relevant sentence/paragraph.

You can also find more information if you browse our health pages, which are accessed in the link box at the bottom of the right hand column in our forum. When you click "see all health pages" you will be taken to the list of health pages we share with all the other "neuro" communities; from there you can seek out the pages relevant to dysautonomia. Be aware that we generate these pages ourselves so some may be incomplete at this time.

I look forward to getting to know you and I hope you find the information you need between the resources here and of course by asking us as many questions as you need/want. Welcome!
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