Dysautonomia (Autonomic Dysfunction) Community
Diagnosis advice
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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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Diagnosis advice

Hi all,  I need some help and advice regarding my symptom. Over the last couple of months, I have been having the following:
Lightheadedness
Excerise intolerance
High pulse while standing often greater than 30 point increase in min, but settling down to 25 point by 5 min. Some times around 130 to 140 with standing.
High BP while standing (diastolic around 10 pints higher) BP some times around 150/110
Cold feet
Heaviness in legs.

So far electrolytes,cardiac evaluation,brain MRI have been done. Cortisol is normal, stimulation test has not been done. Neurologist I met does not diagnose pots and referred me to university in Denver. My question is are these symptoms due to pots or just anxiety?. Also general practitioner prescribed ace inhibitor for high BP should I take it? My BP is normal to mildly elevated when supine.

Any help much appreciated.


5 Comments Post a Comment
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612876_tn?1355518095
It sounds like it would be a good idea for you to get a second opinion as your physician suggested. Your symptoms are consistent with a POTS diagnosis, but many other conditions can be similar to POTS, so having a knowledgable practitioner evaluate you is important.

Some people do get elevated blood pressure with POTS or other forms of dysautonomia (e.g., hyperadrenergic POTS), and some doctors will indeed prescribe medication to lower it. In rare cases, the same person suffers from both high and low BP (at different times) and may be given medications to both raise and lower it, with instructions on how to take them depending on what the BP is. At any rate, it is advisable to take medications that a doctor prescribes to you, unless you get a second opinion otherwise.

Let me know if there are any other questions I can answer for you. Welcome to our community.
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Avatar_m_tn
Thanks so much for your response. I am trying to decided if I should go to university of Colorado in Denver or travel to a dysautonomia clinic out of state. The thread on diagnosis is very informative, am wondering how long it would typically take to get an appointment in a dysautonomia dept like cleave land, mayo or Vanderbilt. Thanks
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612876_tn?1355518095
Out of the three big dysautonomia clinics, I would recommend Cleveland. Mayo turns a lot of patients away, but Cleveland is very accepting of dysautonomia patients and can typically get the ball rolling within a month or two, depending on which specialties you need to see while you're there. I personally like Dr. Shields (neuro) at CC. I've had very good experiences with him, and so have quite a few of my friends. Let me know any other specialties you're looking into, and I can give you names of who I've heard is good there.

Remember that it's also an option to go to Denver first, see what they can do for you, and *then* decide whether to go to one of the dysautonomia clinics. It's entirely up to your preference.
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Avatar_m_tn
Thanks so much for the advice. Will let you know how it goes. For now am recording data, creating case history file, and trying to get appointments.

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612876_tn?1355518095
Keeping data and collecting your case history is seriously the most important part of the diagnostic process, in my opinion. It enables you to demonstrate for the specialist all the tiny trends and symptoms that might otherwise go unnoticed, or your body inconveniently refuses to demonstrate while you happen to be in front of a doctor.  

You really sound like you're on top of this and advocating the best you can for yourself. As always, I'm sorry that you have reason to be in our community, but I'm glad to meet you.
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