Vestibular migraine: What symptoms do you experience?

Anyone suffering from vestibular migraines? Trying to confirm my diagnosis and share symptoms

@erin38 I did have cervicogenic headaches with pain on the back of my head, dizziness and vertigo, and neck pain. I had spinal cord compression because of a collapsed C5/C6 disc that had also grown bone spurs next to it pushing into my spinal cord. This was causing what is called "funicular pain" where pain is caused by the spinal cord compression anywhere in the body. That was a confusing thing for spine surgeons who missed that, but in coming to Mayo, I found a neurosurgeon who understood those symptoms. I also have thoracic outlet syndrome that is worse on one side, so it causes tightness and muscle spasms in my neck that start turning or tilting the upper cervical vertebrae. When my symptoms begin with a headache, I can lay down to put my neck on slack and feel if the alignment had changed. I worked with a physical therapist who could gently realign the vertebrae with a muscle maneuver because there are muscles that connect the neck and shoulder blade, so you can push against resistant to get it back in place. There is a big risk with instability in cervical vertebrae and no one should be working on your neck until you know if your vertebrae are slipping and by how much because that can be very dangerous if you have instability right under the skull. This should be evaluated in imaging with a doctor before physical therapy begins. I would also caution you against chiropractic adjustments because they can injure you, and that risk is higher if you have instability which is referred to as spondylolisthesis. I had 2 mm of backward slipping called retrolisthesis at C5/C6. You may want to consult a spine surgeon to look for spine issues as they can sneak up on you and cause compression, or at least get an MRI and see a spine surgeon if that report finds anything. I did have pain with my spinal cord compression, but other people have had this without a lot of pain. I had a fusion which resolved the issues, and my neck calmed down. I still have TOS and can cause a muscle spasm that twists a cervical vertebrae just a little bit, but it's very seldom and I can get it resolved easily with stretching. You may also want an evaluation for TOS, and that seems to be more common in people with whiplashes and spine injuries, so look for a specialist at a center that treats TOS. I was evaluated at Mayo for TOS as part of the workup before spine surgery. Vestibular issues can be caused by the neck and spinal alignment problems. Physical therapy can help a lot, and it can delay spine surgery for awhile by helping to maintain stability and better alignment. TOS can also affect the blood supply to the brain and cause light headedness particularly when turning the head. There is a condition called Bow Hunter's Syndrome (rare) where C1 gets twisted and stays that way affecting the blood supply to the brain because it stretches the vertebral artery that is passing through part of the vertebrae. Here is a link with a lot of detailed information.
This page has several articles able vestibular issues, TOS, and problems associated with the atlas and axis ( C1 & C2)
https://mskneurology.com/category/jaw-head-neck/

What is TOS?

What I might suggest looking at is if your vertigo could be caused by a misalignment of your upper cervical vertebrae with your neck and jaw. If you are having muscle spasms moving the vertebrae around, you can have vertigo, and severe headaches up the back and sides of your head. Some of those conditions might also compromise blood flow which then could cause dizziness. If you haven't considered this before, I would recommend possibly seeing a spine specialist and getting imaging to diagnose any alignment or instability spine problems. A physical therapist should not treat your neck without imaging and a doctor's approval because instability in the upper C spine can be serious. I have experienced sudden vertigo and at the time, I didn't know my upper cervical vertebrae were out of alignment. All I had to do was look upward, and I lost my balance immediately. At the time, I did have a cervical spine problem and had not had surgery, and it was generating lots of muscle spasms that did change the normal alignment and curve of my C spine and everything was tighter on one side causing vertebrae to twist or tilt. My physical therapist very gently realigned my spine and released the muscle spasms which corrected the vertigo. The other symptoms you mention with severe headaches, arm weakness, fatigue and tingling can also be spine related. I certainly would recommend seeing a Mayo specialist. I am a Mayo spine surgery patient and at my first visit, I was evaluated by a neurologist first (with other tests and evaluations recommended by him), and then I saw the neurosurgeon. The neurologist can evaluate where nerves are being affected that bring on your symptoms, and that helps a spine surgeon understand more about the case (if it is a spine issue). They need to identify the source of the problem before treating it. Since my spine surgery, I have had a great recovery and I do not have vertigo or balance problems. I don't have spine related pain. I do also have thoracic outlet syndrome (TOS) which causes a compression of nerves and vessels to the arms which could be something else to look at for yourself. Mayo can evaluate that too. TOS is often misunderstood and there are not many places a patient can go to get help for TOS and my treatment for that is physical therapy. Let me know if I can answer anything else about my experience at Mayo.

I have been getting tightness on my left neck, I would not call it pain just mussels or nerves tightening. I also get dizzy. CT, MRI came clean they are suspecting Minears desease. But I think my neck has something to do with this dizziness that I feel when I look up or down. This has been going on for a month. I would like to go to Mayo to be evaluated but I am 24 hr. nurse to my husband, can they evaluate me online with all the tests that I took. Recommendation of who you started with will be helpful and phone number. Thank you.
Nadia
By the way I live in Ohio

Nadia,
You may get some answers with a physical therapy consult. It is easy to have you lay on your back on the table, and a therapist feels with their hands to feel if your spineous processes are lined up. When one side of your neck is really tight, it can independently rotate cervical vertebrae and that happened to me which caused vertigo until my vertebrae were realigned again. It happened before I had my cervical fusion when I looked up, and now it doesn't, but I still get a bit of rotation and I recognize the early signs and can do some stretching to reset my neck. The vertebral artery runs inside both sides of the neck vertebrae, and when a spasm rotates the vertebrae, it stretches the artery. I you bend your neck, it kinks an already stretched artery and affects some of the blood flow to the brain. There other causes of vertigo, but this is my experience related to cervical spine issues.

If you are doing a lot of lifting in caring for your husband, that can pull on your neck and kick this up. You can apply to Mayo, but you probably need to be seen in person for a diagnosis. There are also hospitals affiliated with Mayo in the Mayo Clinic Care Network that have direct access to consult Mayo specialists and you get your treatment locally. Here is the map, and there are 2 locations in Ohio. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

In answer to your question about my Mayo spine surgeon, he is Jeremy Fogelson at the Rochester campus. I had cervical central canal stenosis because of a ruptured C5/C6 disc that grew bone spurs and pressed into my spinal cord. He did decompression surgery with a fusion. If you do want to contact Mayo (any campus), you can use this link and they will call you back. If you want to use the Care Network, look for a specialist at one of the local hospitals and contact them directly.

Jennifer

Thanks for the quick response. The location in Ohio is too far for me. I will talk with my primary care physician and go from there.
By the way I do not lift my husband he still can make it to the bathroom and back. I don't know what triggered it. It started with not being able to find a comfortable pillow and got worst. Thanks again.
Nadia

@nsainato Nadia, it is probably the position of your neck when sleeping that is starting the issues. That happens to me if my neck is not properly supported. Your primary care doctor can send you to physical therapy, but before that, they should get some imaging to rule of spine instability because that can be dangerous if someone works on your neck if it is unstable. My PT also does myofascial release which helps a lot by loosening the tightness in my neck. That is specialized training and you can search for a provider at https://www.mfrtherapists.com/

Here is our discussion about myofascial release therapy for information.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

If your doctor wants to consult Mayo, they can do that. There is a place on the Mayo website for medical professionals to consult specialists there.
https://www.mayoclinic.org/medical-professionals

I hope that information helps!

Jennifer