Facial Twitching- Still looking for a diagnosis
Posted , 12 users are following.
Hello all! I'm in the states and have been dealing with ongoing (off and on) facial twitching since March of this year. Mine started as a constant non-stop fasciculation in my smile line on the left side of my face. Then over a period of a few months, both of my eyes at various times had twitching- pretty constant in top and lower lids. Also around my eye and eyebrow area- very fast fasciculations that would go on for sometimes an hour at a time. Things died down for a few months, but now I'm having some pretty serious twitching around my mouth on both sides. This time the right side is worse, but I have it on the left as well. I was wondering if any of you have had twitching on both sides of your face. My doctors are clueless. When it starts, it looks like a pulsation under my skin, or like there are electrodes attached to my face. I haven't had any of the pulling up of the cheek, or the closing of the eye- so I'm wondering if HFS is even what is going on. I've been at a loss and very scared at to what's happening. Things are so much worse when I'm tired, or stressed, and seem to be a thousand times worse when I'm looking down at my phone. Any help or similar stories would be greatly appreciated! I have another appointment with a neurologist on the 11th of this month- have had an MRI and a Lyme test and metabolic blood tests when all this started- all were negative. Since HFS seems to the be the closest thing I can find to what is going on- I was wondering if anyone had experienced anything similar. Thanks so much!!!!
0 likes, 27 replies
Bigbook62 krnflakgrl
Posted
Please find a COMPETENT neurosurgeon and make an appointment. Both sides with spasms is unusual but I'm sure a COMPETENT neurosurgeon is in order. Dr. Raymond Sekula of UPMC in Pittsburgh is someone I highly recommend. He is awesome. Google him. His personal email under his picture on his bio. Email him with your systems if you think you could come to PA for best doctor I feel in this field. Google his name, then UPMC0
krnflakgrl Bigbook62
Posted
I actually did see Dr Sekula. I flew there last July.. He didn't think it was HFS either..they aren't sure what it is. I have months with nothing and then will have a few weeks where it's bad and all over..I just live with it...I have lots of other health issues, so maybe someday we'll find the cause of all of it...
kristina11148 krnflakgrl
Posted
Bigbook62 kristina11148
Posted
What do you do for a living? I was the manager of a legat dept and ended up loosing my job because I couldnt read and even after surgery my eye still blinking so bad I still couldn't do the job. The main nerve in my head didn't heal right either so now I have a head so tender you can't touch and get severe pain every 4 hours
kristina11148 Bigbook62
Posted
I am a realtor. I am constantly face to face with people. I'm sorry your surgery did not work. Did they elaborate on why?
Bigbook62 kristina11148
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It did work. The entire right side of my face used to spasm. That is pretty much gone. It's my eye that's being stubborn. 50% of people come out completely spasm free after surgery and 50% it can take up to a year for nerve to heal and them to be spasm free (1%) have the occipital nerve pain I have from the nerve being stretched during surgery. Everyone gets the nerve stretched but in 99% of people, the nerve heals within 2 or 3 weeks during post surgery recovery. I don't regret one bit having the surgery. I would do it again. I'm better off already and optimistic that my eye and nerve pain in head will go away completely with time
Smalliee krnflakgrl
Posted
Hi,you just described exactly what is happening to me,I live in Nigeria and my doctors have decided to use me as a Guinea pig because they have absolutely no clue what it is,I've had mine for 7 years and it's not easy to live it at all,it's also frustrating not to know what it is. My latest diagnosis is conversion disorder and I'm seeing a neuropsychiatrist,who's basically saying I'm doing this to myself but hey I want to get rid of it so I'll try anything but it's good to know I'm not alone,I used anti depressants for a while and it helped for a bit,maybe you could try that.
Bigbook62 Smalliee
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michael60739 krnflakgrl
Posted
Hello there. I am sorry for your condition. In 2008, I already felt my left face feeling different with itchiness, ants moving underneath skin, and pain in my left ear. Then, my left eye and cheek and corner of my mouth started to twitch in 2009. Neurologist diagnosed my condition as HFS. I did have MRI + MRA but they both were negative for any vessel pressing on 7th nerve. Doctor put me on xanaz or depakote and they did not help. Xanaz was drousy and I could not think straight. What helped was botox. Since then, the spasms spread to my chin and neck muscle.
I had another set of MRI and MRA in 2012 and they were negative as well.
Also in 2012 and during a very stressful period, I saw twitching around a small area on the right corner of my mouth. I began to dread that my right side will be affected by HFS. Luckily, this twitching on right side went away in a few weeks.
In 2014, I was put on baclofen starting at 10mg and eventually now 15mg twice daily along with 25mg Lyrica twice daily. These medications help me a lot. I tried to go down on medication recently and my face twitched more and I have to return to normal dose.
In the past 6 months, I feel that my right side began to experience early symptoms of my left side including ants running underneath skin, occasional visible twitch underneath the eyes along with pain in the ear and headache. I am now truly dreading bilateral HFS. I am seeing an expert neurologist in HFS in a few months. I am not sure what to expect from this specialist since he might as well confirm it and not being able to change my situation unless I go see a neuro-surgeon.
Recently, I had another MRI that now show vascular loop pressing on left facial nerve and vascular loop pressing on right 8th nerve. The 8th nerve is responsible for hearing and balance. I feel dizzy at times lately and I am praying that I will be ok. But no vascular compression on right facial nerve has been discovered to account for twitching on my left side.
MVD (microvascular decompression) is something I am not entertaining with right now since I am the only one working in my family. My 7 year old son still needs me and there are so much risks going to surgery including death. I will consider it when he is much older.
There are things that I can tell you that help me control facial spasms and feel good about myself. For a long time, it was embarassing and hard to accept my condition. Once I accepted my condition, I feel much less embarassment and pressure. I know my family and friends still see me the way I am beyong the facial condition. I don't put on sunglasses to cover up like I used to.
Good sleep, abstainance from caffeine and alcohol, good sleep and exercises help a lot with minimizing the twitches. In term of exercises, I work out 6 days a week. 3 of the days, I take up yoga (hot yoga + vinyasa flow). The yoga classes help my spasms tremendously. Swimming also sooth the body and mind. Overall, these activities keep me in good health and lessen my stress.
If you ever decide to have botox treatment, please consider a opthalmologist since they know best of delicate muscle structure around the eye.
Recently, I self-treated myself with CBD (tincture form of 6mg dose once a day) and the wierd sensation on right side of face and ear and headaches have almost disappeared. I tried to take myself of CBD to test, the headache and ear aches returned. Once I take CBD again, those symptoms go away.
One last thing, true hemifacial spasms have twitching during sleep. That what I was told by neurologist.
I wish you the best of luck.
Bigbook62 michael60739
Posted
Botox was $485?every 3 months out of pocket because insurance didn't cover it. Plus , although it stopped spasms for a bit, no neurologist could get the patterns of injections right so I looked even more freakish. I'm happy it works for you though!
michael60739 Bigbook62
Posted
That is why I rely on ophthalmologist to provide Botox injection. I don't think neurologists can be as good as Opthalmologists about knowing the delicate and detailed musculature around the eye. It is important to review site of injection as well as dose thru a chart at every visit prior to actual injection. Also, I tried to be as conservative with dosage. My usual total dose is about 30 units and some of these units also applied to the unaffected side for balancing. I usually pay $300 per visit for every 3 months. The effect started on day 4-6 and lasted for about a good 70 days before it started to wane.