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Hemifacial spasm
I have had my spasm for the last 25 years. I have been taking Botox for 20 years it was the only thing that worked. Five weeks ago I started acupuncture to see if it would help. My spasm has been reduced by more than 50% and we’re not done yet. I can remember the day it started and it has never felt better than this. The girl that is my acupunctureist is telling me to expect more relief. Amen
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Hi, @jmajbk. Welcome to Mayo Clinic Connect. Sounds like you've dealt with the hemifacial spasm for many years now.
I'd like you to meet some others who have talked about hemifacial spasm in themselves or a loved one, like @gigi76 @jnetten @marti2018 @esumner @annamh @michelles123. I'd also like to introduce you to @johnbishop @hopeful33250 @jenniferhunter.
Since you mentioned that botulinum toxin (Botox) was the only thing that worked for a long time for your hemifacial spasms, wondering to what degree it helped you? Will you share more about the acupuncture - how you learned it might be helpful, what is involved in your treatments?
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2 ReactionsHi @jmajbk, I would like to add my welcome along with @lisalucier. I'm happy to hear that acupuncture treatments are helping and hope you have more success. I'm not familiar with the condition but did find an article that provides some information on a group of patients over a period of time.
Natural History of Untreated Hemifacial Spasm: A Study of 104 Consecutive Patients over 5 Years
-- https://www.karger.com/Article/FullText/453276
I'm hoping other members will be able to offer information on their treatments that also may be helpful. I'm sure they would be interested in learning more about your success with acupunture.
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1 ReactionBotox gave me about 90% relief. My acupuncturist tried a few different needle positions that were all helping but at the fourth session she had me lie on my chest and put 12 needles in my back and that must have triggered something. Since then I have noticed remarkable results. My twitching has been reduced dramatically.
I tried botox it only lasted about 2 weeks, cost $500 and I could only do them once every 3 months. Not a good solution for me.
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1 ReactionI have had hemifacial spasms for at least 16 years. I did the botox, ( which always made me look like I had a stroke with my eyelid and mouth drooping for at least 5 1/2 weeks). I stopped that because I can look that way without it. I did medication, just made me want to sleep, even when I cut the dosage in half. Then 4 !/2 years ago, I had the surgery. My mistake. My spasms stopped for about 5 months, then began the twitching. Also, I lost some hearing in my left ear, and I could not read for longer than 30 minutes, be in places with movement, bright lights, motion and my social life decreased. After 2 years of this, my PT sent me to a neurologist to do testing. It was diagnosed as Vestibular disorder. I had severe pressure on top of the left side of my head whenever I was in the environment described. Also, I could tell my eyes were not working together. It took 4 1/2 years to find to diagnose that my eyes do not work together. I am now wearing progressive lenses with prisms. My heavy pressure has almost disappeared. My social life is better and I can read as long as I want. However, my spasms have continued. My eye droops frequently and so does my mouth. Meds, massage, botox do not work for me. I will look into acupuncture. Thank you for sharing your story.