vestibular migraine

Posted by klhe @klhe, Aug 12, 2018

good day members,

Johns Hopkins diagnosed me with vestibular migraine a little over one year ago. Prior to that no one knew what I had and I saw ENTs, neurologists, and many other Dr.s. MRI of close to two years ago shows all is normal. However, despite a respite of feeling almost normal for three months while taking a new medication (Effexor extended release at 75mg.) all of my symptoms came back full force for what I call episodes, at least once a week, and lasting up to three 3 days in bed. My symptoms for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue. I can feel like a pressure in my head at times. I have not lost cognitive functions: that only occurred when I took Topiamate. My internist wants me to see a specialist at the Mayo Clinic, but I wonder if anyone else has experienced what my Hopkins Dr. calls very atypical VM symptoms?

Have you read ‘Heal your headache 1-2-3’? My vestibular group on FB is specifically for SCDS, but a lot of them have MAV (migraine associated vertigo aka vestibular migraine). It breaks down the triggers of migraine and medicines/foods, etc. I took it with a grain of salt and agree with 50% of it. PT, dry needling or acupuncture can also help with migraine. Those who have done the diet consistently have great success with their migraines. Knowing triggers and avoiding them also help. Vestibular rehab therapy helps with the vertigo/vestibular symptoms.

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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.

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Dear Jennifer,
Thank you for your thoughtful and detailed post. My Dr.'s and I had not considered your hypothesis. However, I recall that a chiropractor that I saw about 5 years ago took an X-ray of my neck and he said that there was some compression of my C3 and C4 neck vertebrae. Much of what you explain, especially about the arms weakness, makes complete sense. However, my neurologist, the one prior to seeing the Hopkins specialist for VM, did review the X-Ray but had no significant observations. I am so pleased to report that Dr. Robertson at Mayo only today agreed to see me; I am convinced that she order all kinds of head and cervical tests. And, I am sure she will consider TOS.

With respect to your diagnosis and surgery, I am pleased to hear that you are doing better. How was your experience with your Dr. and the neurology group over all?

Thank you again for taking the time to write to me.

Kind regards,

Kathryn

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@uldiver

Have you read ‘Heal your headache 1-2-3’? My vestibular group on FB is specifically for SCDS, but a lot of them have MAV (migraine associated vertigo aka vestibular migraine). It breaks down the triggers of migraine and medicines/foods, etc. I took it with a grain of salt and agree with 50% of it. PT, dry needling or acupuncture can also help with migraine. Those who have done the diet consistently have great success with their migraines. Knowing triggers and avoiding them also help. Vestibular rehab therapy helps with the vertigo/vestibular symptoms.

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Dear Uldiver,

I had not and checked it out. I have spent a good part of the last year trying to identify triggers and to the best of my ability, the triggers do not appear to be food. I want to wait to see the Dr. at Mayo before proceeding with any vestibular rehab therapy as they accepted me today for an appointment with a neurologist. I appreciate your recommendation and thanks again.

Kind regards,

Kathryn

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@klhe

Dear Jennifer,
Thank you for your thoughtful and detailed post. My Dr.'s and I had not considered your hypothesis. However, I recall that a chiropractor that I saw about 5 years ago took an X-ray of my neck and he said that there was some compression of my C3 and C4 neck vertebrae. Much of what you explain, especially about the arms weakness, makes complete sense. However, my neurologist, the one prior to seeing the Hopkins specialist for VM, did review the X-Ray but had no significant observations. I am so pleased to report that Dr. Robertson at Mayo only today agreed to see me; I am convinced that she order all kinds of head and cervical tests. And, I am sure she will consider TOS.

With respect to your diagnosis and surgery, I am pleased to hear that you are doing better. How was your experience with your Dr. and the neurology group over all?

Thank you again for taking the time to write to me.

Kind regards,

Kathryn

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Kathryn,
I'm glad you'll be seen at Mayo. I was very impressed with all the providers there. They really take time and are very thorough and they evaluate all the issues you have that interconnect. I started with the neurology exam, and then the doctor ordered other tests and evaluations. He was in the spine center. I had never had complete MRIs of all of my spine, and they did that. (Some insurance now doesn't want to cover MRIs at hospitals, so check with your insurance before you go there.) They review your imaging with you. They schedule everything for you as you go along at your appointments. I was sent to a specialist for TOS and a doppler study where I had mini blood pressure cuffs on my fingers and they raised my arms and measured the changes in pressure with changing arm positions. I did have nerve conduction studies that went for about 2 hours. If they are booked for testing, you can wait in standby status and often get tests done early. The waiting areas have nice lounges with computers for your use and lots of wonderful artwork everywhere. There are pianos in the main lobby that people can play and it just doesn't feel like you're at a medical center. Make sure you see the Chihuly glass chandeliers over a stair case at the Gonda building. They are spectacular. You might need a few days there depending on how much they schedule for you. Some hotels are in walking distance and others have shuttles. I was also impressed that after I had the TOS evaluations, and an hour later while I was seeing the neurosurgeon, he received a call from the TOS specialist and they discussed my case while I was at my appointment. It is a team approach and the doctors consult each other. You might want to draw diagrams of where your pain is and what type of pain it is and take that with you to your appointment and a list of the questions you have. It's easy to forget to ask something and having it on paper helps. I love Mayo. My case had unusual symptoms and I was refused help by 5 surgeons before I went to Mayo. I chose them because I thought my TOS was confusing the diagnosis of my spine. I had spinal cord compression and TOS at the same time. Coming to Mayo changed my life. I was loosing the ability to hold my arms up and coordination of my hands. I'm an artist and I wasn't able to do my paintings and my surgeon gave that ability back to me. To thank him, I painted his portrait as a gift. I was so grateful for his kindness and compassion as well as his talent that it was what I wanted to do the most as I was recovering last year. His nurse scheduled one of my follow up appointments on a surgery day so I could get photos of him in scrubs. He was a good sport and I brought the finished painting to my one year follow up appointment and he loved it. I had been drawing sketches of him prior to surgery to help me get through it and using my own artwork to stay calm. This was huge milestone for me as I had never had major surgery before. I am so glad I came to Mayo and if I have more spine issues in the future, I won't go anywhere else. I had a great recovery and even now, I am working to rebuild muscle that I lost before my surgery and painting again. Please check in and let us know how you're doing. I hope you enjoy your time there as it's a lot more than doctor's offices. I loved the beautiful historic Plummer building too. ( You can find some videos of it on the website.) I have enjoyed all my visits there and its' a special place to me.

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@klhe

Dear Jennifer,
Thank you for your thoughtful and detailed post. My Dr.'s and I had not considered your hypothesis. However, I recall that a chiropractor that I saw about 5 years ago took an X-ray of my neck and he said that there was some compression of my C3 and C4 neck vertebrae. Much of what you explain, especially about the arms weakness, makes complete sense. However, my neurologist, the one prior to seeing the Hopkins specialist for VM, did review the X-Ray but had no significant observations. I am so pleased to report that Dr. Robertson at Mayo only today agreed to see me; I am convinced that she order all kinds of head and cervical tests. And, I am sure she will consider TOS.

With respect to your diagnosis and surgery, I am pleased to hear that you are doing better. How was your experience with your Dr. and the neurology group over all?

Thank you again for taking the time to write to me.

Kind regards,

Kathryn

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Jennifer, your account of how Mayo healed you moved me. I find it astonishing that five prior surgeons did not want to take on your case. From what I continue to learn about Mayo, they seem to be the last resort for patients with troubling medical issues but, more importantly, they know how to diagnose and treat, with expertise and compassion. I also enjoyed learning that you are an artist and that Mayo enabled you to return to your passion: I am so happy for you. Thanks to your account of your experience with Mayo, I am looking forward to my visit. My husband will be with me, so I am now confident that it will be a revealing experience, in all senses. I will keep you posted! best and paint away

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@klhe

Dear Jennifer,
Thank you for your thoughtful and detailed post. My Dr.'s and I had not considered your hypothesis. However, I recall that a chiropractor that I saw about 5 years ago took an X-ray of my neck and he said that there was some compression of my C3 and C4 neck vertebrae. Much of what you explain, especially about the arms weakness, makes complete sense. However, my neurologist, the one prior to seeing the Hopkins specialist for VM, did review the X-Ray but had no significant observations. I am so pleased to report that Dr. Robertson at Mayo only today agreed to see me; I am convinced that she order all kinds of head and cervical tests. And, I am sure she will consider TOS.

With respect to your diagnosis and surgery, I am pleased to hear that you are doing better. How was your experience with your Dr. and the neurology group over all?

Thank you again for taking the time to write to me.

Kind regards,

Kathryn

Jump to this post

Kathryn,

You as a patient have a lot of power over your own healing. Keep an open mind and an open heart. You are starting out fresh at Mayo. Kindness between both doctors and patients helps everyone. After the prior 5 surgeons had missed the real problem in my case, and I was reading the publications from my Mayo surgeon (before I became a patient there), I found terminology that I looked up, and it was in doing that, that I also found other medical literature that described unusual cases that were like mine. I had just been dismissed after sending a message about having had a vertigo episode to a neurosurgeon at another medical center that I had been seeing for 6 months. I had done all the tests he wanted, but he didn't know if surgery would make me better or worse. He had his nurse send me a message that he wasn't going to offer surgery, and I cried. I tried to get the help from my other doctors at the same medical center to send the literature I had found to the surgeon who refused me, and none would contact him on my behalf. I was afraid to try to contact him myself because everything went through his nurse who was very hard on me, and she had actually refused to make appointments. I talked to my neurologist about going to Mayo and she thought it would be good to go there.

I sent the literature I found with my request to be seen at Mayo to the surgeon who's paper I had read. The dismissal had been a blessing in disguise because during this time I was also caring for my elderly disabled parents and my dad passed away. Right after his services, I got the call to come to Mayo, and I got help immediately from a confident, kind, compassionate surgeon who recognized and understood what the others had missed. During the last several years, I've also had the help of a skilled physical therapist who helped me understand and develop body awareness of my issues, and it was frustrating for me to be able to describe my issues in detail with correct medical terminology and not be listened to by the prior surgeons. I think that can be a problem with doctor/patient communication because patients can believe anything on the internet. I have enough background in understanding this because in addition to the art, I also have a biology degree and had worked in neuro-anatomy research at a University, and studied human anatomy in art school, and I read all the studies I could find in regard to spine surgery during the 2 years I was getting worse and looking for help. Patients need to be the best patients they can be and do what they can to help under the guidance of their doctors. I kind of think of it like a job interview. I made appointments with surgeons only after I had read about their interests and publications, and after meeting them and how my questions were answered (or not), I had a sense of who I could trust. I asked intelligent questions, and the only surgeon who really impressed me was the one I hired at Mayo. A lot of surgeons want to take cases they know will be successful, so when a patient shows up with unusual symptoms, they hesitate, and wait. Mayo is known for taking cases that others refuse. The others told me that some of my symptoms were not related to the spine problem, but that was not true.

Thanks for your kind words. I know how difficult my journey was for me, and if I can inspire someone else to better health with my story, I am more than happy to share that. During my journey, I had to advocate for myself even when I was afraid of having surgery. It was also a journey in learning to overcome that fear. Having a compassionate surgeon made it easier for me to have the courage to make the choice to better my life. My Mayo surgeon changed my life for the better and I will be forever grateful.

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Jennifer, you are most welcome. And, you are spot on about being your own advocate. That is the reason why I am leaving Hopkins and, thank goodness, going to Mayo, because I just don't have the time, and energy, to waste being sick and having a Dr. who isn't solving the issue. I exercise as much as I can, have removed most stress in my life, eat very well, and feel ready, mind and body, to begin again with Mayo. Your posts have really helped me to approach my forthcoming appointment with trust and ease: thank you again! all the best

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@klhe

Jennifer, you are most welcome. And, you are spot on about being your own advocate. That is the reason why I am leaving Hopkins and, thank goodness, going to Mayo, because I just don't have the time, and energy, to waste being sick and having a Dr. who isn't solving the issue. I exercise as much as I can, have removed most stress in my life, eat very well, and feel ready, mind and body, to begin again with Mayo. Your posts have really helped me to approach my forthcoming appointment with trust and ease: thank you again! all the best

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@klhe I was wondering how you are doing? Did you find a doctor who is helping you?

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@jenniferhunter

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.

Jump to this post

Hi there, I've also seen two ENT's, a neurologist, PCP, Pain specialist, PT, MT and Chiropractic. I SWEAR my vestibular issues are coming from my upper cervical spine which in turn are causing headaches. What were all your symptoms? What kind of spine surgery did you have? Ive been looking to talk with someone about their upper cervical issues and dizziness. I stopped going to a Chiropractor 3 months ago. Think he caused more damage. I have pain to the upper right side, back of neck below ear. Stiffness, lightheadedness and balance issues with neck movements. My ears, eyes and brain are fine! Wish I could get someone to see the root problem in my neck. I definitely have vestibular issues but I truly believe it's from my neck.

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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.

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@erin38

Hi there, I've also seen two ENT's, a neurologist, PCP, Pain specialist, PT, MT and Chiropractic. I SWEAR my vestibular issues are coming from my upper cervical spine which in turn are causing headaches. What were all your symptoms? What kind of spine surgery did you have? Ive been looking to talk with someone about their upper cervical issues and dizziness. I stopped going to a Chiropractor 3 months ago. Think he caused more damage. I have pain to the upper right side, back of neck below ear. Stiffness, lightheadedness and balance issues with neck movements. My ears, eyes and brain are fine! Wish I could get someone to see the root problem in my neck. I definitely have vestibular issues but I truly believe it's from my neck.

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@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/

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