Ok let me give a brief history. I’m 36 y/o male, started having dizzy related issues late when i was about 15 or 16. At one point, my balance was messed up for 6 months. Went to college, lived my life, intermittently had actual vertigo ( couple times a year), often was completely normal, and sometimes balance/vestibular issues. Fast forward, started having some ear fullness/ears ringing in 2016, which eventually led me to see Dr. Furman at UPMC in Pittsburgh and he diagnosed me with VM. A previous Doc had diagnosed me with Menieres, but Dr. Furman said that it was not Menieres. They did a bunch of tests there, mostly normal from what i understand, but the following was said, maybe someone can help me understand this. Rotational Testing: Abnormal. Earth vertical axis Gain within normal limits, phase lead within normal limits, horizontals nystagmus showed mild left directional preponderance
Caloric Testing: RVR of 18% in left ear and within normal limits. From 4 irrigation’s, a left beating nystagmus was 38% stronger than right. Exceeds normal value of 25%.
I can send results to someone if they are familiar with interpretation. Anyway, that was in 17. Been feeling great overall, had a few episodes, and the occasional flare up of balance trouble for a day or two, but 6 weeks ago i started having some issue with feeling off balance. I’ve had several “oh shit I’m about to have a vertigo attack” at work, but then they fade. 4 out of the last 5 mornings I’ve woken up very dizzy, and it takes hours to get my bearings. Haven’t had this in years. I’ve moved from Pittsburgh since my appointments, and trying to find a doctor here in Fort Collins CO.
Couple questions. Can I rest assured that Doc Furman was right, and this is migraine and NOT Menieres or something else? He told me sternly at the time: “I’ve been doing this for 30 years, you don’t have Menieres.” I historically don’t believe doctors. Should i revisits the testing?
Thanks, glad i found this forum, hope it’s a great resource. This is particular bad timing, as i have a backpack elk hunting trip in 1 week!!
Mark, it’s best not to repeat your history, but refer to your intro post you made here already: Newly Diagnosed with Vestibular Migraine - some questions. That way you can keep your post more succinct and to the point of your question.
We cannot diagnose here, so cannot overrule doctors. That said, I’ll leave it up to the house who I’m
sure can make some useful comments.
NB “Vestibular Migraine” and “Migraine Associated Vertigo” are diagnoses (based on measurements and symptom descriptions), NOT aetiologies. This can also be said of Menieres. There is much to learn about how these conditions actually work but I sincerely doubt they are as simple as a migraine in any case. I’d also suggest there is probably more variety in aetiology than the simple umbrella terms suggest.
I will just say that Menieres sufferers almost always have low frequency hearing loss as a result and usually don’t have continuous symptoms lasting months or years: they are, initially at least, usually totally steady between attacks. They also seem to have significant hearing disturbance during an attack, usually a roaring tinnitus. If your condition does not follow that pattern, then I’m not sure how someone could make the case that you have Menieres?
Waking up dizzy is very normal with MAV! Usually symptoms decline during the day, and you can feel much better by afternoon.
I do hope things calm down for you by the time of your trip!
Thanks so much. I can’t even remember that i made the original post! This is just an update, and as things have flared up, I’m just discouraged, frustrated, and confused as the why the hell things have, our of nowhere, come back… but I’ve made an appointment with a doc and we’ll go from there
Hi Mark, have you seen what Dr Hain has to say about Caloric testing?
He writes extensively on the subject and of course most of the information is well above my pay grade but what I have learned is there is a lot of variability in the testing and results based on type and who is administering. Here he states “basically there is just one good way to do it (bithermal and ice is needed), and a lot of not so good ways.”
So, moral of my response here is that you may want to look at getting new testing done by someone else since it’s been a few years and it also seems you have been given conflicting information.
Best wishes! https://dizziness-and-balance.com/testing/ENG/caloric_variants.htm
Thanks for the info. I’ve read that there can be a lot of variability, even if you take the same test 2 months apart, for example. I’ll read through his info, but does he discuss VM and caloric testing? I.e. how often do VM folks have weaknesses on the caloric tests?
Hi Mark, I’m not sure about prevalence but I had the caloric testing done and was shown to have 79% vestibular loss on my left side. The administrator of the test was flabbergasted and tried every which way to get a response. I was left with a diagnosis of vestibular neuritis and started vestibular rehabilitation.
When I kept getting worse and eventually found a Otolaryngologist, he read the caloric test results and said “I can see how that could have been misread but there is no doubt you have vestibular migraine” and tossed the test in the trash.
I’ve not had another test to find whether I have deficiencies or not. I have followed his treatment and have improved to near normal life.
If I could offer anyone suffering one bit of advice is to keep looking until you find a Otolaryngologist who you feel confident with the diagnosis and treatment plan.
Best wishes!
