Vestibular migraine: What symptoms do you experience?
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for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue.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?
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@nsainato Nadia, one other question. Have you had an injury to your neck like a whiplash even if it was years ago? That could be a reason for muscle spasms as it was in my case. I think from the way you describe this with either looking up or down causing the symptoms, your situation sounds very similar to mine in being a change in circulation. I'm glad you found an MFR therapist. They can work wonders! Let me know if that brings you relief. It can help so many things and get the body moving again as it should.
Good luck!
Jennifer
Hi I was sent to therapy for vertigo. They had me lay on one side, shook my head and sat me up. Almost fell off the bed. Next morning threw up 4 2 days straight and tinnitus started. This was after Labor Day. ENT doctor did MEI and found a meningioma. Not a good way to find our. I keep thinking if I did not go to therapy I would of been better off with the start of this terrible symptom of tinnitus. I don’t think she should of shook my head back forth trying to get the crystals back in the canals. I never and will not go back.
Thank you for all the information you have provided. I found some MFR therapist nearby I will definitely discuss it with my Primare Care. Thank you.
Nadia
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1 Reaction@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
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
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
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
@nsainato TOS is thoracic outlet syndrome that I talked about in the post that you replied to. Here is some information about it.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
What is TOS?
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1 ReactionI have an appt. At John's Hopkins in November. 7 months of all over head and neck numbness, tingling, burning. First 2 months were unbearable. Debilitating headaches. Been on high dose of Gabapentin, carbamazapine, elavil. I get body itching and heat/feel hot when episodes increase. I have gotten relief with meds but far from my normal self. Waiting till November to see what they tell me. Have had every test imaginable, all normal. Seen at least 15 doctors. No one can diagnose. Keep saying nerve issue but no one knows.
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