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!

@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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Thank you Jennifer.
I have started to check these links.

David

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I have fibromyalgia to go along with chronic pain due to lupus and/or MS. The numbness and tingling have gotten worse but I am on a new med so it gets better but it takes some time.

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@corxdv I have had some experience with vertigo, and for me, it was caused by a physical mis-alignment of my cervical vertebrae. I had a spine injury from a whiplash over 20 years ago, and as I aged and developed disc problems in my neck, it also caused muscle spasms that pulled the vertebrae out of alignment by straightening my neck and independently rotating or tilting some of the vertebrae. If C1 or C2 rotated or twisted (without me turning my head), it could cause vertigo if I looked upward. I worked with my physical therapist, and after realigning the vertebrae, the vertigo stopped. I also had spine surgery for spinal cord compression because of the collapsed disc and bone spurs from the old injury, and since then, it has calmed down and not been problematic unless I do something that causes a muscle spasm.

If it hasn't been ruled out already, you may want to ask for a spine evaluation and imaging because vertigo is a symptom of a spine or skull alignment problem. A physical therapist needs to know about any spine instability before they are able to work with a patient because instability can be dangerous and even life threatening if a therapist works on your neck with this type of problem. Electrical sensations in the body can also be caused by spinal cord compression. I experienced that too, and when I bent my neck, I sent a big electric shock down my body because I was bending my spinal cord across the bone spurs that were pressing into it. Spine problems can sneak up on you and make you think the problem is somewhere else.

If the neck is stable and you have your specialist's blessing, physical therapy may be able to help. There can be a lot of different reasons for vertigo. Sometimes the last thing anyone thinks about is a physical reason which may be able to be helped with physical therapy. I know that vertigo is an awful thing to live with and can be nauseating and disruptive to your life. I have had irritation of my Trigeminal nerve. In addition to having had a spine injury, I also have thoracic outlet syndrome that causes one side of my neck and chest to be too tight and it pulls up into my jaw and can cause jaw pain or tingling in my face. My physical therapist also works on that when it is out of alignment. A good physical therapist is key to solving these kinds of problems. My PT is in private practice in her own clinic and not working for a chain. She also does myofascial release and has expert level certification in that. Here is our discussion on MFR where there are a lot of resources and links. A PT like this can feel the muscle tightness and mis-alignment that causes nerve compression problems.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Where can I get info re vestibular migraines eg Good doctor, treatment, prognosis, etc

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@pueblo

Where can I get info re vestibular migraines eg Good doctor, treatment, prognosis, etc

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Hi @pueblo, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion so that you can meet other members talking about vestibular migraines, like @corxdv @jenniferhunter and @stonereject45. They can also share thoughts about where and how to find a good doctor, treatments and prognosis.

Pueblo, what treatments have you tried? How long have you had vestibular migraines?

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Hello @pueblo. I am a Mayo spine surgery patient, and before I had corrective surgery for a collapsed C5C6 disc and cervical stenosis, I had lots of muscle spasms that were moving my neck vertebrae around and I did have some episodes of vertigo because of it. I was able to work with my physical therapist and realign my neck which stopped the problem. One word of caution on this is that you as a patient and your physical therapist need to know if you have any instability in your cervical spine before you attempt physical therapy because it is dangerous if instability causes vertebrae to move and put pressure on the spinal cord. You would need an evaluation from a spine specialist who would have x-rays taken in different neck positions and measure on them to see if there is movement or slipping of a vertebrae. I had a slight movement of 2mm in my neck, and 4mm would be the cutoff to disqualify a patient in a clinical trial for artificial disc replacement, so that lets you know how doctors view this. You do need someone to evaluate the reason you are having issues as there could be many other reasons for vertigo. The reason I had this was because a physical misalignment of my spine and how the skull sat on top which physical therapy helped in my case. If you scroll up to my post from May 16, 2019, I was talking about vertigo in relation to my thoracic outlet syndrome, and I posted these links for information.

I would suggest doing your best with posture, and sleeping with good spine alignment. A heat wrap on your neck might help relax muscles, and topical Arnica get can help if you have pain or inflammation. I used to do that and lie down on my back to get my neck pain to calm down before I had spine surgery. Right now, it may not be possible to find a doctor for evaluation as non urgent medical appointments have been discouraged because of the pandemic, and sitting in a waiting room would expose you to other patients. Mayo also suspended evaluations and non urgent appointments recently, and they would have to answer for recommendations right now. There are some remote options to contact doctors, but that may not work for a physical problem. My physical therapist has closed her clinic temporarily until further notice, and I continue my stretching and myofascial work at home to maintain what we have accomplished.
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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@pueblo

Where can I get info re vestibular migraines eg Good doctor, treatment, prognosis, etc

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@pueblo-Were you able to get your questions answered?

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@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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I have this along with an acoustic neuroma so don't know which is causing symptoms when they flare up, also fibro, spine and neck problems,etc side of face goes numb and all kinds of symptoms that sound a bit off the wall. Supposed to have radiation treatment to stop the growth of the tumor. So far haven't found a doc that can treat or knows anything about vestibular migraines. I go to Duke in NC because it is near my home.

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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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@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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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.

Liked by Jennifer Hunter

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