Sticky Blood-Hughes Syndrome Support

drooping face

hi i have been a member on this site for 6 months but never wrote anything,so here goes...

i got diagnoses with aps 6 months ago after having several miscarrages..years of severe head aches..aching joints beyond believe..massive memory loss(which is driving me crackers) and a clot on the only 31 and feel so broken..

my question to you wonderful people is have you ever woke up with one side of your face drooping(like someone who has had a stroke would look)mine is like that on the left side every morning but is back to normal usually by lunch time..when i have this drooping face in a morning i also feel drunk(i dont drink any alcohol)

thank you for reading my post..if anyone can help that would be great as im not back at the hospital til next week

thanks again

10 Replies

HI there mushroom, nice to meet you and thank you very much for posting on here - you are right there are lovely people on this site, all of whom have so much to offer.

I can understand your feeling broken, ! was diagnosed last November, I too have had 7 miscarriages, a DVT and also it seems so many clots on my lungs they are now permanently damaged - Do try not to feel so broken, but blessed that you were diagnosed before you got worse, and also that things could be worse. Although I had 7 miscarriages I have 2 lovely sons, and now 3 Grandchildren, will APS stop me living? Absolutely not, if anything it will help me live my life,! I will just live it slightly differently, including a skydive if all goes well this summer - Sorry I digress to answer your question, no I have not suffered this drooping face, tell me do you take warfarin or other anticoagulants? if yes have you had your INR checked, but either way, I would advise that you try and get your appointment brought forward and explain why, and or get an appointment with your GP and explain to him what is happening, try even to get the appointment in the morning while your face is drooping.

What ever happens, I send you warm and healing hugs and a smile




Hi, and welcome, Mushroom

My daughter has exactly the same response as you described, but on her right side of her face.

She is a long time APS patient of some 15 years (and still counting!), and we have finally found a Specialist who has some experience with APS..YAY!

Sorry, I also digress.

The answer is yes, very definately, and her INR's are on the low end of her range ( 3 - 3.5 ) when it happens. She is also extemely fatigued when it starts. It's one of the signs we look for to indicate how she really is, at the time.

Hope this helps you.

Kind thought and hugs, also.

Wayne L


Hi Mushroom

My daughter has told me I look like the Cheshire cat form "Alice in Wonderland" at times with how my mouth droops occassionally on one side. It hasnt happened until recently but it isnt everyday either. (think I ought to go find a picture of the Cheshire cat

The doctor in the emergency noticed it and said....hmmmmmmmm.

I would imagine it could have to do with APS as that is my main issue. I would have it looked at if I were you as it is happening everyday. Better safe than sorry I say.

You take care of yourself... and welcome!



I'm so sorry to hear you feel so broken ;(

I know it must be hard & it always feels like a struggle, but try to stay positive as like Lesley says it could have been diagnosed much later & done more damage, I know it doesn't always make us feel any better at the time as we all have our struggles in this disease, plus theres always some worse off, so I'm sending you hugs & possitive vibes through the comp' :) xx

What is your inr ? just wondering if its a little low & if that may be causing it?

Take care, Sue xx


Hi mushroom glad you have posted and hope to hear from you again this site is such a great support where you feel safe asking practically anything ;) at 31 you have/already been through so much like many on here it sadly affects us/at a young age but your not alone.

My advice on top of the excellent advice given so far is to take a picture as well. I've had some odd clotting probs/recently affecting my left side and blood supply to arm & leg so the a&e doc suggested taking a picture as it helps them.

I woke up once where my left eyelid was inverted it was thought during the night my left side of face probably had a weakness that self resolved do you get eye involvement?

Sending you big hugs Kathy xxx:-)


Hi mushroom

welcome and glad you found us. I get same on left side of face. It seems to coincide with my inr being low, my partner has noticed it too. Probably be an idea to get it checked out hon and take photo to show docs.

I hope you get some answers hon.

Take care gentle hugs love sheena xxxxxxx :-) :-) :-)


Hi Mushhroom,

welcome to the group and yes anther drooper here as well on right side, mine is also due to the damage my stroke did but i was also told that the drooping is an effect that if your INR is low it could be a TIA trans ischimic Attack (mini stroke) definatly work making sure your INR is at the right level .



thank you all for all your fast,kind and supportive replies,i am feeling alittle better about my face now thanks to you trying to get hold of my hospital/gp this morning to move my appointment boyfriend also says i look odd in a morning but not like a cheshire cat more like the bloke from goonies lol(hey yooou guysss)...

lesley D, good luck with the sky dive,your more brave than i am..i am lucky that i did manage to have 2 kids before becoming ill,so i shouldnt complain not on warfarin.

wayne L,im glad you have found an aps specialist,my local hospital have been great they seem to know alot about aps,i also feel very fatigue,i also use this as an indication of how well im am.

kathyD34,thank you i have taken your advice and took photos this morning and are waiting a call back from my gp.

thank you all again for your help,hugs and kind thoughts,

hugs to you all



The best of luck to you, and yes do take photographs, I have resorted to this many this for my overlapping conditions and also keep a history in bullet points with current gripe added so I make full use of every appointment. I hope with the support on here you can get more out of your appointments. Best wishes. Mary F - and do please keep us all informed.


Hi Dankkushlickmysack,

First of all I do not understand what you mean with your comment (I can not even found " cringey" in my dictionary as I am from Sweden) and also you have now answered a 5 year old question.

Please tell us now what is your problem? I assume you have our illness HS/APS as we are not medical trained only try to help eachother with this illness which we all have here.

Best wishes from Kerstin in Stockholm


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