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  • Weird Facial Muscle Spasms/Chronic Stiffness? Autoimmune, Brain-Related?

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    Old 08-12-2021, 10:14 AM   #1
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    Coyotesdawn HB User
    Weird Facial Muscle Spasms/Chronic Stiffness? Autoimmune, Brain-Related?

    I'm not sure if it is actually termed dystonia, but what I experience is a marked stiffness and contraction behavior in multiple muscle groups. The muscles affected most often are the cervical muscles, TMG area, forehead, back of head, and nasal/sinus area, including eye muscles. I also sometimes get stiffness in my abdominal muscles, quads, throat, and chest muscles. The stiffness is significant enough to choke peripheral nerves or cut off the blood supply, as I get pale and have residual or lasting numbness wherever the stiffness hits. It's evident my peripheral nerves become inflamed and sensitive, leading to even more muscle tightness. Over time, I've had more and more trouble controlling my facial muscles and have accepted long-term damage.

    This disorder started suddenly in the Fall of 2016 with significant stiffness in my neck muscles one morning; no problems at any point before. The stiffness never went away on its own after that.

    In early 2018 I began to have spasms and constant rigidity in my TMG and facial muscles (particularly sinus, forehead), and other muscle groups, especially at night when I lied down. There was probably an autoimmune component as I was battling mold poisoning at the time, and mold exposure caused my facial muscles and nerves to swell along with other cutaneous autoimmune symptoms. And parkinsonism; the mold toxins caused that even though it's improved. The stiffness could also be triggered by touching my face or using makeup/facial rinses. Introducing any foreign chemical such as a facial wash could send me to the ER with severe facial stiffness (can't open eyes, can't move facial muscles AT ALL).

    Nowadays the episodes are usually only triggered by lying down or getting up too fast. I use a very thin pillow and always worry my head isn't in alignment hence the muscle spasms, but my PT told me I was sleeping in an acceptable position. The spasms do seem to start at the skull base, and radiate outward from there.

    Currently I respond well to 2 medications. I've been on cyclobenzaprine for the last half decade, which alleviates spasms or prevents them from happening at night if I remain calm and don't move much. I also keep emergency valium around which is extremely effective; but because it's a benzo I only use it during emergencies when the cyclo does not work. Have also tried trigeminal nerve block (failed), and physical therapy (limited efficacy, temporary). The fact that the cyclo works well may indicate a central disorder such as something wrong with the basal ganglia, but the hell would I know.

    I'm seeing a neuromuscular specialist in September. I'm worried they are going to dismiss my suffering though. Anyone have a similar experience or have an idea of the cluster of diagnoses this might fall under?

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