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Vestibular Migraine with associated tactile illusions

Posted by corxdv @corxdv, May 16, 2019

My wife (age 67) was recently diagnosed with chronic Vestibular Migraine disorder. For the past year she has experienced constant (24/7) vertigo, along with false sensations of objects in her mouth, a metal brace around her face, and an undulating energy field around her. The diagnosing otoneuroligist believes the VM could be impacting the trigeminal nerve system also, which could explain the facial and energy field sensations. She has another neuro appt coming up soon, and has not yet begun a treatment for this. Ativan gives her an hour of relief a couple times a day. Has anyone else experienced or heard of these odd tactile sensations being associated with VM? Thx!

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sarasally2 | @sarasally2 | Apr 27, 2020
In reply to @corxdv "Hi. Some of my wife's symptoms are also "off the wall". They include sensations of metal..." + (show)
@corxdv

Hi. Some of my wife's symptoms are also "off the wall". They include sensations of metal and string in her mouth, and a metal band around her head, as well as a sense of undulation throughout her body. Are you experiencing anything like that? Thank you - David

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I have such strange sensations I was afraid to mention them and unless you get to the right doc they think you are off the wall or making it up and who would do that? I feel as though I am constantly rocking in a boat, yesterday it started with my eyes seeing shadows then a really bad spell of vertigo which sends me spinning in fear, then feeling of stabbing in my skull and like someone hit me in the back o f the head then it shoots down my neck, numbs my face, shoulder and chest feel like pain inside my skin then I am in bed for the rest of the day, stomach is a mess, side of my mouth tingles, it is like a monster circulating in my body. Sometimes lasts for three days then I am shot and can't function then anxiety and fear set in. Sometimes my skin feels like it is burning. I have a heightened sense of smell along with things. The metal band around your head generally happens

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corxdv | @corxdv | Apr 27, 2020

Boston Eye and Ear diagnosed my wife with VM a year ago after several hours of testing, so we felt we were on the right track. The oto-neurologist there did feel the VM could be impacting the trigeminal nerve system also, which could account for my wife's odd tactile sensations. Other neurologist however have questioned whether this is actually what's going on, so we are not certain she is on the right track. Boston is too far away for us, so she is now seeing new primary care and specialists at Dartmouth Hitchcock Medical Center (NH) and they have been great. Multiple disciplines are involved and they are taking her symptoms seriously. Her symptoms are relentless 24/7, so we desperate for some relief for her after 2 years of suffering.

@jenniferhunter has suggested resources to us regarding interaction of vestibular and trigeminal nerve systems that have been informative.

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cmg | @cmg | Jul 12, 2023
In reply to @jenniferhunter "@corxdv Here are some extensive articles about vestibular impairment and the trigeminal nerve. These are written..." + (show)
@jenniferhunter

@corxdv Here are some extensive articles about vestibular impairment and the trigeminal nerve. These are written by a physical rehab therapist. I have had some vertigo myself, caused by muscle spasms that moved C1 & C2 and when my therapist realigned everything, it resolved the vertigo. I am a spine surgery patient and also have thoracic outlet syndrome which causes tightness from my chest and neck up to my jaw which is worse on one side, so I have uneven pressure on the sides of my neck up to my jaw. One side was so tight, I was wearing down my dental fillings only on that side of my mouth. I had a collapsed disc at C5/C6 and bone spurs causing stenosis in the central canal, and that was generating the muscle spasms. I had spine surgery at Mayo and it resolved the spasms that were causing the vertigo, and everything has calmed down. My therapist is an expert level in the John Barnes methods of myofascial release which has helped a lot. There is a discussion here with a lot of information on MFR. I am still working on the TOS with my PT and gaining ground. I did have tingling in my face from the trigeminal nerve prior to the surgery, and can still have a bit of that now and then, and then I check my spinal alignment and I have found slight shifts above my fused level which my therapist can easily fix. Mostly that happens if I sleep wrong and have my neck in a turned position which can kick up the symptoms and cause a slight spasm. The issues for me were caused by misalignment of the spine, skull, and jaw due to overly tight muscles and uneven muscle tension from side to side, that then causes compression.
https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://trainingandrehabilitation.com/treating-migraine-headaches-addressing-atlas-thoracic-outlet/
https://trainingandrehabilitation.com/true-cause-solution-temporomandibular-dysfunction-tmd/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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corxdv
Hi there
I am six months into my diagnosis of vestibular migraine. After many negative MRI and cat scans, I am working with a neurologist. I am on my third trial of medicine. The level of imbalance has lowered significantly, however remains daily. I still walk like and feel like I'm on a boat often. Have you noticed the heat and humidity as a trigger? Realizing our triggers are individual, I was curious. I kept a journal to help.
cmg

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