It's official (finally diagnosed)

I saw my specialist today and walked away with a rather firm diagnosis. It was really a no-brainer, as my symptoms over the last two months virtually screamed migraine: dull headaches, dizziness without vertigo, motion sensitivity, nausea, diarrhoea, the whole nine yards of feeling crappy. He isn’t 100% sure there isn’t something else going on, but he is 100% sure that I’m a migraineur even though I have no history of it from more than 3 years ago. We talked about the two major bugaboos I’m still afraid I might have:

  1. a csf leak (says he doesn’t feel qualified to diagnose there, but doesn’t have any index of suspicion in that area and says a visit to a neurologist to rule it out would probably be very “low yield”)

  2. vertebrobasilar ischaemia (says two years of benign and stable brain MRIs despite symptoms pretty well rules that out as a cause)

okay, there was a third:

  1. SCD (the clinical picture does not fit – I don’t have the pressure sensitivity, and my VEMP was negative).

The cause of my sudden hearing loss last July (happily temporary) was a subject of long discussion. Unlike many physicians he is well aware that migraine can cause hearing loss, and mentioned that. What isn’t so common is permanent damage to the inner ear from migraine. Although I have normal hearing acuity, I have some low-frequency hyperacusis left over in my left ear that is very uncomfortable and often makes me want to crawl out of my skin. This dates from then and has not improved at all in nearly six months. I opined that I’m afraid I’d have to have had a migrainous infarct to explain it, and he did not disagree. But we did leave the subject on the possibility that it was unrelated to the migraine, perhaps an inner ear virus.

The only thing about my visit that I wasn’t happy with was his recommendation to just stay the course treatment-wise, advice based on my improvement this week on Migrelief after nearly 8 weeks of misery. He wants me to continue on Inderal, Dyazide, and low-dose acyclovir to hopefully prevent a recurrence of the maybe-virus that damaged my left cochlea. If my improvement proves temporary, I’m going to be ringing them for an urgent appointment. The problem is, even an “urgent” appointment to see him usually involves a wait of at least a month. So for now I’m just keeping my fingers crossed.

Glad to hear you finally have a diagnosis, as there is nothing worse than feeling unsure about what you have.
I also understand your frustration about waiting for appointments. I pretty much gave up on my consultant managing my medication as her non-urgent appointments are now 5 months apart, which is clearly no use to me when I was trying to find the right medication, and I ended up going to my local GP and getting her to manage it instead. Otherwise, I would have got nowhere. Urgent appointments seem to be non-existent and depend upon getting a cancellation.
Anyway, I hope you continue to see an improvement on your medication and you are soon feeling much better. Keep us all posted. By the way, what is Migrelief?

migrelief.com/

And I think you’re right about urgent appointments. In the past I have only been able to get in “urgently” because this is a large clinic with several doctors seeing patients. The youngest M.D. is one of those strange souls who has such a cheerful way of delivering bad news that I call her Dr. Ice. But she is the only one that I was able to see last July when I lost my low-frequency hearing in my left ear overnight, and she dx’d me almost immediately (well, at the first sign of fluctuation) with Meniere’s. My current specialist is much more migraine-savvy but he’s always booked many weeks ahead. :frowning: