Harlequin Syndrome/ Heart/ Respiration/ Help

[melipnyc]

Hi, I've been diagnosed with right side Harlequin syndrome.  I'm interested in talking with others who have this rare condition and/or people that have familiarity with my symptoms.  I know that harlequin syndrome can have many causes, mine appears to be possibly a lesion on the T1 area of my spine, but the doctors aren't 100%, they want to MRI again in 6 months.  I'd like to know if others that have harlequin syndrome have other neurological problems?  I have been diagnosed with inappropriate sinus tacchycardia and hypotension. Am currently on midodrine.  No doctor I've seen can explain why I have these other issues, not related to the Harlequin Syndrome.   On occasion, I have chest pain, fatigue, and shortness of breath, and weakness in my legs while climbing stairs in addition to the other symptoms related to the Harlequin.  What they and I can't explain, is how I can go work out, and be fine, and then hours later not be able to walk home w/o stopping to catch my breath. At this point I'm so confused.  I'm 34 years old, female, and trained as an athlete.  Does any of this sound familiar to anyone?  
Thanks

[halbashes]

I'm not familiar with Harlequin Syndrome, but some of your symptoms sound a lot like Autonomic Dysfunction.  Have you ever had a Tilt Table Test?  How long have you been taking Midodrine?  Is it helping to ease your symptoms?

[melipnyc]

Hi,  
Harlequin Syndrome is an autonomic disorder basically means that one side of the face does not flush or sweat properly, especially during exercise (as in one side red (normal), one side pale (nothing happening), and is accompanied by numbness and tingling.  It can have many causes, some quiet serious.  It's classified as a rare disease.
Some info I found on the internet states that Harlequin can overlap with other syndromes, or rather, people that have Harlequin can have other neurological issues.  
I've been to two well known neurologists a cardiologist, and have been through a battery of tests, including the tilt table.  On the tilt table, I felt nauseated, and my heart rate shot up, but bp didn't drop.  I was told that I panicked.  
I've been taking my bp and it really varies.  I've noticed when I'm working or stressed it goes lower, and my heart rate higher, and I'm experiencing symptoms of tacchycardia, fatigue, etc.  I've been asked if I have anxiety, and I do get stressed at work, but doesn't everyone?  That's why I was hoping to find others with my condition, so they could tell me if they had the problems with shortness of breath, chest pain, etc...  
For instance, last week, I worked out in the afternoon (fine) and then at night, walking home I had to stop 3x to catch my breath.  I've been tested for asthma.  The only other difference is that it was hot outside earlier that day, and I couldn't sleep the night before.  I often just can't sleep at night.
Midodrine has helped overall.  My heart rate is more normal, and  have more energy, can concentrate better.  
Thanks for your time!

[halbashes]

The Tilt Table Test isn't a hundred percent accurate.  Fainting doesn't necessarily mean Autonomic Dysfunction, nor does not fainting eliminate the possibility.  The fact that Midodrine reduces your symptoms probably indicates you have episodic low blood pressure.

If you are seeking a clearer diagnosis, perhaps your doctors will consider repeating the Tilt Table Test.  Now that you've had the test once, and understand the procedure, anxiety is less likely to alter the results.

Breathing is an autonomic process as well, one that is often ignored.  Be sure to stay very hydrated, especially with liquids containing electrolytes.  Keep sports drinks, (or watered down sports drink if sugar is a concern), nearby while exercising.

I hope you feel better soon, and that your doctors are able to help you with your treatment.  I'm sorry I cannot be of more help, but perhaps someone else in our community will have more insight to offer.

[maltesesd]

I posted in the Neurology section as well. I have the lack of sweating/lack of flushing on my right side. I've been told that the flushing/sweating side is the normal side. I have just gotten a diagnosis last month. I actually brought some info from GARD to her office because she had never seen this before. It started last year after mowing the lawn in the heat. I am a 41 yr old female and have done aerobics for years. I now have to do low impact because I overheat very quickly. I have weakness in my legs going up the steps as well. I've had Athsma for about 10 years now, so I can't tell when I'm having an athsma attack or if it is due to the new symptoms related to Harlequin. I thought I was crazy about getting winded and weak legged walking up the steps. I just can't understand it. Your post is the first recent one I've found on the internet. This syndrome is recognized by GARD but not by NORD.