newly constant vestibular migraine
I have had rare visual auras without head pain for years, and weather related left side pain (whole body) that I consider a form of migraine, but not sure. Some smell hallucinations.
The last few years I have had facial pain and numbness, which is intensely painful with loud sounds. Coinciding with onset of tinnitus. I have a diagnosis of trigeminal and occipital neuralgia but not sure about these labels.
I have cervical stenosis and myelopathy, so neck issues for sure. Seven spinal fractures (age 74, osteoporosis is well-treated). DIagnosed lupus, and cancer survivor.
Okay- sorry for the long intro- a month ago I woke with vertigo/dizziness. It was preceded by a day of intense whole body pain. Clearly weather related. Usually a few times a year this happens for a few hours at a time and I have had the diagnosis of vestibular migraine a few times.
The thing is, the vertigo didn't go away. This past month it has fluctuated and there have been maybe 3-4 okay days. Last week same thing, a day of intense pain, then a day of spinning and lack of balance. My eyes are burning and my whole head feels tight with pain.
I know everything is connected: neck, brain, spinal cord, facial nerves, auditory nerves and I don't even care to tease out which is the cart and which is the horse!
I see on this forum that this sudden onset of constant vertigo happens to many others. I am sorry to hear that but it is also a comfort to find company. This seems like an extraordinarily nice forum!
I am scared of MRI's and not sure if they are useful. Acoustic neuroma has been suggested but my hearing loss is bilateral.
Just saying hello- a bit long sorry! I am reading about how others are treating this problem which is very new for me and scary.
Hi there! Not sure why I missed this until now. Glad you found your way to us, though I'm sorry you've got so much going on. Migraine is certainly unpredictable, and in my years here in the community I've come to believe that just about anything can be a migraine symptom.
I'm not a doctor or an expert, but those neuralgia diagnoses make sense as far as I understand them. Here's an article about trigeminal neuralgia just in case you're still looking for the basics:
https://migraine.com/living-migraine/trigeminal-nerve
As far as occipital neuralgia goes, Anna has also written elsewhere that while the nerve itself is in the area of the cervical spine, "pain is felt up the back of the head up the scalp and behind the eyes. An occipital nerve block is often used for relief but also diagnostically."
Migraine often changes throughout our lives, and new symptoms can come and go. Vertigo is absolutely miserable but yes, pretty common within the community here. I hear you about the fears of going through an MRI -- remember that the choice is yours. Maybe you can go to an imaging center that has one of the "open MRI" designs? They are less claustrophobic. And if it's safe for you, you might be able to take something to relax you for the scans. It could be useful to rule out other issues, or compare to other imaging if you've had anything done previously.
It might be useful for you to know that lesions can appear for people with a history of migraine: https://migraine.com/clinical/white-matter-brain-lesions
Hopefully some of this is helpful. At the very least, we're always here if you want to vent! Keep us posted, okay? I hope you can get to the bottom of this vertigo cycle! -Melissa, team member
I just saw after I wrote my message that you've been chatting with
. And clearly you've been doing lots of reading around here! 😀 Happy we can be a resource for you. Good luck on the MRI decision. We support whatever you decide is best! -Melissa, team member
Thank you Melissa! I am not claustrophobic, but finally accommodated to my tinnitus and don't want the noise of the MRI to worsen it again 😀 With a history of breast cancer, so many one-sided neuro issues, and new symptoms I should probably get one though. Thanks for the support!
