Vestibular migraine: What symptoms do you experience?

PT’s are more attuned at picking up instabilities of the cervical spine as they are not seen on static films. Especially upper cervical spine problems unless there is a congenital, traumatic (would have been found at time of trauma-usually, not always), or Down’s syndrome or Rheumatoid Arthritis. Those are the 4 things neurosurgeons look at and if you don’t fall in those categories or even if you have trauma, most don’t believe you have upper cervical instability. It’s a rough road and you will be mistreated at most places you go bc they’ll think you are doctor shopping. Dr. Patel (one of the Carolinas-south I think?) and Dr. Bolognese up in NY both are the primary upper cervical spine specialists. Prepare to fill out massive amounts of paperwork (important for them to know your history) and they have to have a referral from your neurologist stating why you need to see them. They are only interested in surgical cases (as all neurosurgeons usually are. If they can’t operate on you, you’re wasting their time. There are a few that will recognize what we, manual orthopedic specialists can do to stabilize the spine without surgery.
I have significant upper and lower cervical and lumbar instability from years of severe trauma in gymnastics, diving and many others. I have had 6+ PTs diagnose the instability, but getting a proper image requires a very specific order from a neurosurgeon usually. They have to do an upright functional MRI. Some do fluoroscopy x ray type video to show the instability, but this is a lot of radiation. I work very hard with my stabilization ex’s and it took years to get where I was pain free and stable and could hold my head on my body again. But it is a lot of work. Just like my vestibular ex’s are a lot of work, but I will be disabled if I don’t do them bc I have no functioning vestibular system remaining. I also have what’s called Myalgic Encephalomyelitis. This was diagnosed as “SEID” at Mayo and that was not a fun trip. I was terribly mistreated by one of the GI doctors and the neurologist.
The neurologist missed my orthostatic intolerance, but thankfully my ME specialist in CA is treating it and I’m doing much better.
ME is usually not a sole diagnosis and usually involves some form of dysautonomia (dysfunction of the autonomic nervous system), mast cell activation disorder is also very common, connective tissue disorders causing cervical instability‘s which intern can cause the autonomic nervous system dysfunction and ME itself is more recent findings. There are quite a few ME people that are being somewhat “cured” by the spine surgery. However the ME can be the cause of the connective tissue disorder (if not congenital-from birth). This laxity (looseness) of the joints causes the head to literally compress the brainstem resulting in autonomic dysfunction. Once the head is placed back where it goes with a fusion surgery (they fuse the spine to the skull so you can no longer move the head) it allows normal blood flow, nerve function, brain function, etc.

Sorry, this is all kind of complex.
I’d recommend seeing a neurosurgeon that treats CCI/AAI and you will likely have to travel to find one. Patel and Bolognese are the two known ones to the ME community and keep them busy.
I’d also recommend seeing if someone can do autonomic function testing. Beware though, it is not covered by any insurance. Long story short, I also got stuck with $4-6,000 bill from Mayo bc it was not covered nor did anyone attempt to get it approved before repeatedly performing a test we had already done ($1300 each!). Not cool. I lost that battle. Another $4,000 medical $$ down the drain to be told 2.5 yrs later that they could have discounted it or I could’ve applied for financial assistance (wouldn’t likely qualify. If you work your buns off it’s expected your entire yearly salary should go towards medical costs).
Good luck. And yes there are fabulous and skilled PTs out there that catch the instabilities waaaay before neuros do bc they look at static images. We can feel the instability and treat it with appropriate safe (and very important) stabilization exercises.

@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/

Thanks a bunch! Will check that website out. Im getting a new MRI next week. No more chiropractic. Definitely need to get this figured out. Really do think the headaches, balance and vestibular are related to a problem in my neck. Now I just need someone- the right person to figure it out and give me the right treatment. Appreciate your response and hopefully it will help other people out there besides me. 😊🙏

You think neurosurgeon or orthopedic? Which for cervical spine?

Also, did you just do a normal MRI lying down or in a supine position? I just hope whatever is causing all this will show up in MRI. I did a cervical MRI a year ago and I do have 2 bulging discs- C4-C5 (small) and C5-C6 (moderate). Curious if anything has changed in a year? But my upper cervical to the right is where I feel pain and like a bobble head feeling. Hope chiropractor didn't permanently damage something.

@erin38 Both ortho and neuro surgeons can be spine surgeons. I think the neurosurgeons have more of a focus on the nerves themselves and not just the structure of the spine. I had been seen by both in my quest for help, but I found a neurosurgeon was the best doctor and he understood what the others had missed. I'm sure there are also good orthopedic spine surgeons. Try to find one who has fellowship training. If you can go to Mayo, that would be my recommendation.

@erin38 Yes, my MRIs were done laying down on my back. If you do have misalignment or rotation, that will show up on an MRI. They may not pay attention to it or may think it is because of a passing muscle spasm. Talk to the radiology person about making sure to look carefully at the upper cervical vertebrae for any misalignment. An X ray will also show alignment of bones, but not the bulging discs. X-rays often are done in different positions of flexion or extension to show if the vertebrae are slipping forward or back. For involved spine cases with deformity, they can do standing full spine X-rays and compare that to laying down and it may be very different. I hope that physical therapy will be enough to help you. You might look for a good PT now to see for an evaluation after you get imaging done.

@jenniferhunter-Hi. Could you explain what a vestibular migraine feels like? And with a disc rotation how/who exactly can figure that out?
I have been given multiple theories and “diagnosis’s”.
1. Cervicogenic headache. 2. migraine type headache. Then told it’s my brain chemicals setting off the headache and I need to balance out my pain sensory chemicals like seratonin, norepinephrine and dopamine. I’ve been told the anger about the pain is causing the headaches. The medical community has only caused more confusion while trying to figure this out. Any insight on what exactly these headaches feel like, duration, ways to alleviate. Thank you.

I was diagnosed with "migraines" by a neurologist, neuropthalmoligist and PCP. They were all in agreement of migraines with a "vestibular" component AKA Vestibular migraines- but I still question it. Ive had chronic headaches for years but they were never migraines. Apparently you can aquire migraines, ect. My mom has had them since she was 16 years old, but hers are different. I honestly believe my so called " migraines" are related to my neck issues. Ive had Xrays and MRI's of my neck which shows disc issues, Soft tissues, ligaments, ect. Last year it showed two bulging discs. They can press on nerves or even the spinal cord. If I do actually have migraines- I believe they are caused from issues in my cervical spine. Ive read a lot and done a lot of research.

Anyways my symptoms besides the chronic one-sided neck pain are: lightheadedness (like a faint/passing out feeling), off-balanced (like I've had a couple glasses of wine), headaches between my eyes and sometimes the back of my head (but not like the pulsating kind that migraines usually are), blurry vision, tilting/swaying feeling when walking, providers have seen nystagmus in my eyes with neck movements and brain fog. Also- they say with vestibular migraines- you don't always have a headache but you can just be dizzy, lightheaded and all the other migraine symptoms.

Suggestions: You could ask to try Nortriptyline (used for migraines/nerve pain) look it up! There's also more NATURAL remedies out there that help - Migrelief (supplement: has magnesium, riboflavin and feverfew) it helped me a lot but have to stop taking because of some other GI issues. Or you could try just magnesium, riboflavin and COQ10 separately OR eat foods that are high in these vitamins. Vestibular rehabilitation has also been beneficial for some folks as well.

Check out this website: vestibular.org
VEDA website. Talks all about vestibular disorders. Let me know if you have other questions. 😊

Also what doctors have you seen? Have you seen a neurologist and ENT?