Support needed Differential diagnosis for Dysautonomia and POTS

[tmacho]

I have just been through a series of testing at Cleveland Clinic to rule out MS and then with the electrophysiology cardiovascular team for a tilt test, hemodynamic and blood volume testing.  My tilt test was positive (I passed out) and am still awaiting results of the other 2. My cardiac function is healthy and strong.  I have been told I have an autonomic disorder and potentially POTS but now have to wait another 2 months to get into Dr Robert Shields at Cleveland Clinic (neurologist focusing on autonomic dysfunction). I am really struggling with the symptoms (episodes of passing out or near passing out with significant drops in BP, blurred vision, extreme fatigue, numbness in legs, occasional but extreme GI issues).  Does anyone have experience with Dr Shields (reviews were interesting) or any suggestions of other potential autonomic neurologists in the midwest area (Cincinnati area) that I may be able to see to get things going from an assessment and treatment perspective in the interim?  I have a full time and demanding career with a family that needs and counts on me - and at moment am near a state of disability.  Any thoughts or insight appreciated.  

[paindoc38]

It is important to consider the diagnosis of a spinal CSF leak as an alternative to pots. In both conditions patients feel better when lying down and have neurologic symptoms when upright, in CSF leaks there is usually a prominent component of headache or neck stiffness but this is not universally true. A trauma that occurred shortly before the onset of symptoms would also help suggest a CSF leak. CSF leaks are also associated with chronic nausea, ringing in the ears, blurry vision, fatigue and brain fog. A referral to a specialty center is important for reaching the diagnosis. In California Ian Carrol at the Stanford pain clinic is doing work  on spinal fluid leak

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[funliving]

My daughter has nerugenic cardio syncape, a form of dysautonomia.  It's similar to POTS, but her blood pressure and heart rate goes down, not up.  I wouldn't wait for 2 months if I was you.  At least see another doctor who would be willing to get you on Midodrine.  My daughter takes it 3-4 times a day now, and it really helps her.  She's also on 2x day Flourinef (florinef--not sure of the spelling).  Both of these combined have helped her tremendously.  She went from bed ridden, exhaustion, dizzy, nauseous...to almost  normal.  They are the two most common prescribed meds for this condition...once it's diagnosed.

[tmacho]

that is very helpful, thank you! I am working at trying to see someone sooner rather than later, if nothing else to try the medications to see if they help prior to my Dec 8th follow up appt.  Thanks again - my blood pressure drops significantly too, and it is very difficult to function and focus for sure.