Confused by diagnosis

I hope you are all doing OK.

Im slightly confused …I have just had the letters back from my neuro after caloric and positional testing.

My symptoms are 24/7 dizzyness/light headedness, eye motion intolerance without migraine pain.

The main points of the letter says “I had upbeat nystagmus without fixation in the head up position, but this was otherwise in normal limits. Caloric testing showed a 52 percent siginificant canal paresis to the right side.”

He concludes this is a migraine variant and will continue the Migraine diet if no improvement to try medication.

From what im reading this sounds like more like VN. Is the treatment for VN the same as MAV ?

Scott ? Any experts with any comments ?

I think Scott has a really good article here about how you tell the difference between VN and MAV. Not sure, anyone here know this?

Your symptoms sound exactly like mine and Dr Fife told me I was a straight forward MAV case. How is your driving? I have a terrible time driving which is a little better with meds, but can only drive a short distance. But before Effexor, I was sick, dizzy, heavy head, brain fog, nausea, fatigued 24/7 with no headache. :twisted:

Anyway, sounds to me like MAV.

There’s currently no official diagnostic “code” for MAV, so they usually put it under “migraine variant.” My neurologist used the same term when he was writing it up in his notes, but the neurotologist who diagnosed me used the term “migraine associated dizziness” and told me to go see a neurologist for ongoing treatment. So MAV or MAD or migraine variant, it’s all the same thing!

I showed a 54% canal paresis when I had my first ENT tests, also showed up a right beating nystagmus in one of the tests. The diagnosis then, was menieres that had burnt itself out, well whatever it was, hadnt burnt out, I went on to have the ECOG test which showed over 60% and that meant endolymphatic hydrops. I went on to the neurologist in London and in Oxford and got the diagnosis of Basilar Migraine (I was getting really bad migraines at the back of the head), then vestibular migraine. Then, an ENT test done in London was inconclusive and they wanted me to have the tests done again. Because I reacted so badly to them all, by this point I decided they werent going to come to any conclusion as to my problem so I declined. I know for sure I have bad migraines, I get the aura as well, I think there is probably some damage to the ears and the two go together.

Christine

— Begin quote from "connundrum"

From what im reading this sounds like more like VN. Is the treatment for VN the same as MAV ?

Scott ? Any experts with any comments ?

— End quote

Hi there,

A 52% weakness is a significant finding and certainly suggests all is not well in that ear.

Do you get sound or light sensitivity? Any migraine running in the family anywhere that you know of? If none of these you could very well be an uncompensated case of VN or labs really. How long has this been going on for? Have you been getting better over time or is it the same same? Do you have episodes of things getting worse? What brought the conclusion of a migraine variant?

S

When some people are talking to me i get a strange popping in both ears. Sunny hot days seem worse. No family history. Ive had this for 1 year. I took amitryptaline for sleep issues last year for 1 month and didn’t like it. 2 weeks after discontinuation this all started. So im anti meds now. I swear the ami caused this. When i first started the diet i saw improvement for a week or 2 but then it returned. I wake up ok but as soon as i start moving around it comes on. I’m also a light runner. I can run 3 miles and im ok when im running but after the run all hell breaks loose for about 30 minutes. Then im back to baseline dizzy. Driving is OK. Supposed to be trying Lyrica but too scared of the weight gain that seems common.

Thanks

I have to say - your last comment has me chuckling… :wink:

I don’t blame you for being scared of the meds. I’d prefer not to take any either. But there may be another explanation besides the idea that the ami did this to you.

You were having sleep issues. It’s possible that something was coming on besides a “simple” sleep problem. By starting the ami, you may have treated or masked it (even if the side effects made you feel crummy in other ways). When you discontinued the ami, your threshold for migraine, which had been raised by the ami, started to go down again. And it didn’t take long before your problem hit. Maybe you had VN too at first. But it sounds like it’s very likely migraine that you’re dealing with now. I don’t think VN can last for a year.

When I was still dizzy, certain voices would be difficult for me to listen to. I think the term is hyperacusis - you’re sensitive in such a way that certain sounds are uncomfortable (hard to explain).

Are you being very strict with the diet? No caffeine-free coffee or caffeine-free tea (because they’re not truly caffeine-free)? No chocolate?

If sunlight bothers you (common in migraineurs), or any other light for that matter (some fluorescents bother me too) then you might want to consider trying the FL-41 rose-colored glasses thing before resorting to meds. Some of us have found them helpful. If you don’t wear glasses, then order from AxonOptics. But if you have a prescription, you can have your own spare pair made (don’t get an anti-reflective coating put on first, though) and send it to the Moran Eye Center at the University of Utah (cheaper than at Axon). They’ll tint them for $35 plus $5 to send them back (more if you want them to add anti-reflective coating afterward). You can read about the research that’s been done on FL-41 and migraine on the Moran Eye Center website:

uuhsc.utah.edu/MoranEyeCenter/pa … FL-41.html

If sunlight bothers you – i.e. light sensitivity – that’s a pretty good migraine indicator. S

Thank you everyone.