Harlequin Syndrome, etc

Question

Hi, I've been diagnosed with right side Harlequin syndrome.  I'm interested in talking with others who have this rare condition.  I know that harlequin syndrome can have many causes, mine appears to be a lesion on the T1 area of my spine.  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.  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.  I'm 34 years old, female, and trained as an athlete.  Does any of this sound familiar to anyone?  
Thanks

WorkinMom3 · Answer

I have found out last summer I have it, I read somewhere that clenching and grinding your teeth can cause the damage, because if my other medical issues, I grind my teeth, a lot without noticing. My right side sweats severely.  I also read somewhere that a toxic goiter, and hyperactive multinodular thyroid could cause it, which I have the multinodular hyperactive thyroid, and a goiter.  I&#39;ve asked my doc about it, and he said he&#39;d do research, so ya know how that goes.

bobbins75 · Answer

Yes, I've got it, can't sit still for long or I'm in pain. Damaged thoracic region, Doctor spun me round because I was in breach position at birth, they don't do this anymore, checked with my doctor recently. Spent thousands of pounds on osteopaths and recently got severe nerve damage, just recovering from it now. Very athletic because of havingto move all the time perhaps, but my Dad's family are gymnasts and boxers as well. Do you react adversely to medication from the doctor at all, if you don't mind me asking please?  I've found only a few other Harlequins, not been able to contact them, but they are athletes too. Apart from that are you quite overly sensitive and happen to be good at lifting very heavy objects too? I get incredibly anger very fast, have to avoid socializing a lot. Please reply if you like.

CaptainJames34 · Answer

Wow! My whole life i've wanted to know why i only sweat and flush on one half of my face, and now i do. I was born with craniosynostosis, a rare skull defect requiring corrective surgury. Back in the early 80's, surgury wasn't was it is now, so i've been left with a disfigured skull and a wonder if i experience any effects from it today, such as Harlequin's. So...a couple of silly questions: 

-does anyone else with Harlequin's eat twice as much as a normal person but still be fit and slim? I feel ravenous all the time and my food bill is through the roof! I'm not kidding; two entrees with sides for a meal and i'm hungry again in a few hours. 

-also, which half of my face flushes and sweats changes depending on what i'm doing. Hard work, sports, etc, and i sweat on my right half. When i eat hot and spicy foods, as i commonly do, it's my left half that pours sweat. Has anyone experienced something similar? 

-and the oddest question that i feel funny even asking, has anyone noticed wounds and injuries healing exceptionally fast? 

Input and comments welcome!

Think i might finally go see a doctor now that i know what to call this :)

pipprod · Answer

I too have it I'm guessing, I have sweating on right side of head and arm. sometimes i get droplets above my left eye. I also have a fused vertebrae in my thoracic spine from birth which must have caused lesion.

Not much we can do huh? :)
Im 31 and have learnt to deal with it but was horrible as a 18 year old and I quit competitive sport. I like swimming where no one notices haha.

Pip

shinb0 · Answer

Hello Everyone,

My mother has recently had a lobectomy for lung cancer and one of the complications that she has gotten from the surgery itself is what I believe to be Harlequins, where one half of her face would be sweating and the other half would be completely dry. 

One of her hands would be warm and the other would be cold and clammy as well. I was wondering if anybody has found any new research or treatment available for Harlequins and if there is any long term effects from this condition. 

Is the redness of the face only when sweating or increased blood flow or is it half red for the most part?

Thank you

trow · Answer

I've had Harlequin Syndrome for many years. I first noticed it when I was about 13. I had mowed the yard going around in circles, but only the left side of my face was red. I've never been to a neurologist or doctor for the condition, but have had a doctor tell me in an informal setting that it is Harlequin Syndrome (which apparently I had before they called it that.) Often it is also accompanied by Horner's Syndrome. Horner's syndrome is identified by a difference in pupil dilation and a drooping eye. I don't notice that in myself, but again have never been to the doctor for this. Since I've had it for 35 years now, I don't know that I will see a neurologist at this point.

Although I now live in Nebraska I lived many years in South America and sweating on one side of my face and upper body didn't help much with my cooling. 

From what I have gathered, it is caused by nerve damage to the side that does not sweat. In my case, I know it is not something to be concerned about. It is annoying and does get some interesting reactions. After more than 3 decades with no real change in my condition, I would say that if you have had a doctor make sure there are no other problems, that it is something you can live with. 

I have also read research that claims that 200,000 people in the US have this condition. I personally have only known one other person who had this condition, and she did not live in the US.

mwadeb · Answer

I've always had one side of my face a little redder than the other, but yesterday at the gym, it was very very pronounced.  It startled my friends and boyfriend.  I've also had one pupil more dilated than the other... but it only happened for a couple of days... Should I be freaked out?  What are the side effects of Harlequin Syndrome?

poserism · Answer

Hi, i was diognosed with harlequin syndrome about 10yrs ago after first noticing my face was red on one side after having a beer or 2, after seeing numerous doctors and specialists and getting no answers what so ever, the right side of my face is very noticibly red in comparison to the left side, i also have my right eye lid on a slight droop plus my right eye pupil is dialated and does not react to light.. I really try to avoid hot days however in my current line of work its inevitable so i have to deal with it, I used to excecise regularly but because of this desease i rarely do and have stacked on the weight which obviously dosnt help my condition either... its hard to explain to people, leave alone doctors who have no idea what im going through, i have almost given up looking for a cure although i desperately need and want one.

I was also sent for a sweat test where they put you in a box in your underwear, they put a powder on your body from head to toe, they close the box and turn up the heat to see where exactly you sweat, well the result was i sweat only on my left knee cap, the right side of my head and shoulder.. weird, even these specialists admitted they had never seen anything like it.

If anyone has any idea on treatment, please let me know.

Nanred · Answer

I may just today have been diagnosed with Harlequin.  I have had the 1/2 red face (left side) w/profuse sweating and also only my left hand sweats.  I also have had hypothyroid since 1995.  I used to play (old people) soccer and had a man come up and ask me if I was hit in the face with ball.  I never noticed any drooping until my Doctor asked me to send him picture (because he didn't know what I was talking about) only to see a slight droop of the left eye lid.

sargemac · Answer

I started with the right side of my face also, in 1995, at the age of 39 and I wasn't given a "NAME" for my condition until Oct 2010 because all of the roughly 15 Neurologist's and many MRI's(no answer with them) had never seen such a case , but didn't hesitate to call in their neuro buddies to take a look--talk about not feeling like a freak already without calling in an audience!!! but in 2003-2004 I now don't sweat at all from my head to my breast's, underarms included. I do however sweat profusly from the rest of body down!!! no matter the temp or how active I am...hope to hear from u and others.

sopas · Answer

I have noticed sweating on one side of my face for around 2 yrs now.. I mentioned this to my doctor and she just ignored me. I have taken appointment with a neurologist, hopefully condition is benign cause I really dont have any other symptoms except for sweating, overall healthy 30 year old female with hypothyroid..

emilye · Answer

I am currently doing research for an article on Harlequin's Syndrome and would like to speak with some people who have experienced it. If you would be willing to speak with me about your symptoms/experience, please email me at ebeATnyuDOTedu. Thanks-- I hope to hear from you soon!

Thanks again,

Emily

Bookie18 · Answer

My daughter was diagnosed with Harlequin Syndrom a year ago. The doctor said that there is nothing to worry about. However, I find information on the Internet that makes me worry, e.g. about "Harlequi's Darker Side" article in the New English Journal of Medicine.
Can anyone share with me info in this are or better yet let me know the name of a doctor who specializes in this area?

sottesen · Answer

I have just started showing signs of Harlequin Syndrome with flushing on only one side of my face but I also have a very slight droop to my eyelid and my pupils are now different sizes. It is slight but I notice it and I only really see the severe flushing when I run 10k or play hockey really hard. I have something called Wegeners disease where I have antibodies that attack healthy blood cells. It is under control but you mentioned sinus issues and that is where I have problems from the Wegeners. I have also had problems with my breath and weakness in my legs for most of my life and issues with my muscles locking up with no apparent cause which knocked me out of sports because I would sometimes seize up and wipe our really hard at inopportune times.

jupiterx · Answer

YES!  I have never been diagnosed and just recently started researching what was causing my face to turn red on just one side and I sweat profusely on that side as well.  I'm thinking about going to a Neurologist to see why this is happening to me.  I've had problems with my neck and have had my neck adjusted several times but this was a long time ago.  I do get frequent headaches and dizziness as well.  Hopefully when I see the doc I'll be able to find out WHY this happens.  It causes me to be miserable when it's hot or I get overheated.

maltesesd · Answer

I have recently been diagnosed with Harlequin Syndrome as well. The symptoms started after I mowed the lawn in the heat last summer. I actually brought some info to the Neuro. about this and she had never heard of it. She really didn't know what tests to do so she did an MRI of the brain thinking it might be a tumor, but found nothing unusual. I recently read about the possibility of it being a lesion in the spine. I'm 41, female, and have worked out for years. Other symptoms that have started and may or may not be related are: easily overheating and becoming weak, weakness in my legs when climbing stairs. I emailed Genetic and Rare Diseases Information Center, GARD,and it took awhile, but they did send me some info.