Wondering if anyone else has white matter, lesions, spots on their brain found on MRI’s. I was 29 when all of my dizziness started and had my first MRI after other tests showed nothing. They found the spots and then sent me for further testing to rule out MS. I don’t have MS, but as of last year’s MRI…10 years later…I have more white spots/lesions. I’ve always wondered about the connection between the spots and my dizzy/headache condition. Curious if anyone else has the same thing. Thanks and hope everyone has a happy Friday!
Yes, I do. Migraine can cause white matter lesions on the brain. Same in my case , testing was performed to rule out MS and other equally sinister causes of these lesions.
Have you been diagnosed MAV?
In a round about way yes. I’ve learned that most specialists in my area of the US have very little understanding of this condition. I was told for years it was an inner ear issue. Then about 3 years ago I started also having migraines with auras where I literally can barely see for about 30 minutes. It was only then that my ENT…who happens to be smarter than any specialist I’ve seen anywhere…said he suspects I have a migraine disorder that also effects my inner ears. For the most part, I think this condition is a mystery to most doctors, and because they have no idea what we’re describing actually feels like they just don’t get it.
I have a feeling its pretty easy to determine if its originated in the inner ear or not … if you get Vertigo attacks, 24/7 fluctuating tinnitus (especially unilateral!), and dizziness that morphs in character day by day, without having had a migraine in between, I’m pretty sure that suggests an inner ear condition. That said, sounds like you are getting migraines for sure! But migraines need triggers, and if you look at Hain’s material on his great dizziness site he notes that PLF, BPPV & Menieres can all give you migraines. Basically ear trouble can give you migraines. But I suspect not of the type you are talking about - whilst my eyes are affected its not like I go blind if I have a vestibular migraine - quite the opposite, I have to fix my gaze on a single spot or I become very uncomfortable and nauseous - I can’t even close my eyes.
Some believe that migraines are also vascular, but that is very controversial.
I personally had a very clear start to my symptoms and it was due to some kind of physical trauma to the ear (I stupidly pointed a shower into my ear). Migraines started almost a year later after I’d had almost all of the other symptoms already. After about a week of prophylaxis, my migraines vanished and i’ve not had one since, but I did have vertigo spinning attacks from time to time afterwards, but these were infrequent and rare apart from a phase where they happened once every two or three days for a period of about 3 months.
But we are all different …
It would be a very good start if they actually monitored a few people in a hi-res cone beam CT and perhaps a functional MRI during a Menieres or MAV vertigo attack to cast light on what a vertigo attack is … amazing this has not been done yet because I used to get vertigo attacks almost every other morning so a short hospital stay would have elicited many appropriate opportunities for scanning for sure! Although, of course, the CT scans would expose the patient to radiation so this might not be ethical nor safe if done just for the study and not part of a treatment programme.
Doctors in the UK will be unprepared to book you for scanning if its unlikely to change your treatment programme, which kind of makes sense, but its very annoying psychologically as it might shed light on the cause of your condition, if not the solution.
Not really to do with the thread - but just to mention that I was eventually ‘diagnosed’ with Meneires only when my husband took me to the Dr. (GP) during an attack and caught a partner to ‘my’ Dr (who had blown me off as a neurotic woman who read too much…) on his way home for lunch. He took one look in my eyes and said that this was ‘true vertigo’ and not dizziness - this was 10 years and many Dr’s down the line from when it all started. I was swiftly dispatched to the local ENT - and the rest is history.
I also still tend to believe that my problem lies somewhere within the ear itself - which causes ripples through the brain somehow! Then again - I have dreamed up many theories when I am forced to spend hours, un-moving , staring at the ceiling/wall/whatever!
Once my symptoms morphed int the MAV sphere, the staring at a spot did not halt the distortion of what I call earthquakes! I always thought I could manage the driving by sheer concentration on the road ahead for those 30 or so seconds of total disruption of vision… Not so! no amount of concentration could focus on seeing one set of lines/cars around me/ whatever!!
I totally understand! I tell my husband and doctors that when it’s at it’s worst it almost feels like I’m about to have a seizure or a stroke. It’s like my ears and head feel so full, I’m totally off balance, my thinking is slowed. Can feel pretty scary at times, which is why I think so many of us also have anxiety. I can’t tell you how many doctors I’ve told that I’m anxious because of the never ending episodes that can sometimes be very debilitating and come out of nowhere.
I hear you!!!