Sticky Blood-Hughes Syndrome Support
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Facial spasms and eye blinking

Hi all. For a few years before my diagnosis with APS, I was having symptoms of one of my eyelids feeling droopy off and on. I mentioned it to my then neurologist. He chalked it off to opthalmic migraines. I kept mentioning it every time I went to see him. It didn't seem to matter to him. Just before I was diagnosed with APS, I had a strange event of body spasms starting in that same eye. And, my eyes blinked uncontrollably. I ended up in the ER thinking it was a seizure. That same dr. (even though he didn't come to the hospital to see me) told the on call ER doctor it was a panic attack. Anyway, from then on, I continued to have these types of symptoms, mainly with eye blinking. The eye blinking became worse and I began to have severe facial spasms and strong muscle contractions to the point of severe pain. Two years after that severe episode and almost 4 years after the eye drooping began, after several appointments with many types of neurologists, normal EEGs, too many CT scans to rule out TIAs, psychiatrists, and psychologists, I finally went to a neuro-opthalmologist. I brought to my appointment a video of one of the episodes. He knew immediately what it is. I have Meige Syndrome - a type of dystonia or movement disorder. He does not believe it is due to the APS, but because the severe episode coincided with the APS diagnosis, I think there is a connection. I did some research on Meige Syndrome and there is information about basal ganglia antibodies. The basal ganglia is at the base of your brain and is your brain's information center. I am going to ask my hematologist about it to see if a blood test can be done to find out if these antibodies are high. I haven't gotten very far in my research of this, but may find there is a connection. Although I am relieved that there is finally a diagnosis, and I no longer have to fear that I am having TIAs or strokes, I never in my wildest dreams thought I would have these strange medical conditions. What I get from all this, you know your body better than anyone, and you must continue to search for an answer. Don't take one doctor's opinion as they do not have all the answers. I am now searching for a specialist in movement disorders to make sure this condition is treated properly and it does not affect my entire body.

7 Replies

Hi wilma, how interesting!. I cannot say my symptoms are as severe as yourself, but my right eye droops lower than my left, it is only a fraction, and I get episodes of what I call ' flickering' I feel as though my eye is twitching, but it is not visible to anyone else, but I can see it and feel it, I also getting a twitching of the cheek, and sometimes I feel as though my face has frozen , but again only on the right side!. Thanks for the post, and keep us in the loop, I appreciate everyone input, and I'm heading to my GP this week and asking for referral, my GP is a good doc, but I feel he just tolerates my ' ramblings' . Sarahx


Sarahx, thanks for your reply. It's been a long haul, but if there is one thing I've learned is you need to be proactive in your own health. You are the only one who knows your body, and if you feel something isn't right, keep pursuing it. My symptoms did not start with full facial spasms. They came on gradually, over a 4 year or so span. I, too, feel one of my eyes twitching even though no one else can see it. I also get a sensation in my cheeks and was told that the muscles are spasming below the skin. If you feel you are having an "episode" have someone take a video and bring that to your appointment. I really recommend trying to see a neuro-opthalmologist or an opthamologist who specializes in blepharospasms. This is spasming of the eyes or rapid eye blinking. Keep in touch. I am happy to give you the benefit of my experience. Good luck


Hi willa - if you tell me where you are located I can give you some info of a good Specialist who deals with your condition if you are in the UK.


My uncle had this I think ?? Didn't start to later on in life. I think he had Botox to help not sure but will ask later, both him and my Dad had DVT's and my Mun has had joint pains all her life. They have not been tested for Hughes syndrome, I have Factor leidons as well as Hughes syndrome, it would be interesting if they could be tested .

Good luck hope you soon get it sorted out


This is very interesting because what you have described is almost exactly what I went through about three years ago. First of all my Consultant Opthalmic Surgeon noticed them when I was in his office being treated for a corneal ulcer and I told him that the spasms were driving me crazy especially at night when watching TV because I could feel the constant twitching. He diagnosed Blepharospasm.

I mentioned it on a follow up appointment to my Headache Consultant who was concerned that my implanted Bion was to blame so I was ordered to switch it off to see if there was any change but there was not and if anything things got worse and it spread down my face to the side of my nose and mouth.

I was referred to a Consultant at the National Hospital of Neurology who examined me carefully, asked lots of questions and asked me to do some things. He also ordered a brain CT because I could not have an MRI because of my implant.

The result of all of this was that the Consultant said I did not have Blepharospasm as to have that it means the blinking is so bad you cannot open your eyes so it affects your sight. He said I did not have a balance problem (based on asking me to walk four steps across his small office) and the CT which he never sent me the result of was subsequently said to be normal, however when I had my Stroke about 6 months later and that CT then showed 2 previous TIAs, I asked for a copy of the CT from the National which the Hospital eventually gave me very defensively, guess what, it showed the 2 TIAs! Apparently the radiographer had reported it as normal and he had not bothered to look at it as had not my Neurologist when I saw him a few months later and had both of them done so perhaps I would have a few more healthy brain cells now!!

Funnily enough my spasms are a lot less now, I don't actually feel them but can see them if I look in the mirror mostly around my left eye and now and again around the right and the nostril. I also feel that they were worse in the build up to my Stroke as we're all the other symptoms I experienced. Now that I am on Heparin things are better. Who knows if this is associated with APS or is caused by one of the other side effects, all I know is I don't need another name or label to my growing arsenal especially as its not my primary concern.

If you need Dystonia expertise than the National Hospital has them but I probably would not necessarily recommend the particular person that I saw but that was more to do with politics than medicine.

Good Luck with your search, as mentioned above Botox is usually the treatment of choice.


Thank you all for your comments. I have found a movement specialist and she treats people with Meige Syndrome. I have an appointment with her in 2 weeks. I am now in a better place knowing that I have doctors who know what I have been dealing with. I will keep you posted.


You are absolutely right. We do need to be proactive in looking after. our health. Glad you finally have an answer. Well done for persevering through all that. Hope you get good treatment from now on. All the best Ann


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