Two “wow” responses:
Wow, did THAT take me back! and wow! --yes, one really wonders whether she’s ever tried migraine meds. She never mentioned them during that whole hour, and never mentioned that migraine was ever considered as a cause, or contributing factor, to her dizziness. I might be able to give a little historical perspective on that, although I do not know Sue personally nor her history other than what she said on the video.
Why it took me back: I also live in Portland, saw probably some of the same doctors she did (though NOT her “wonderful Dr. Black,” who was actually quite controversial), and I joined the Vestibular Disorders Association (VEDA) after my longtime dizziness got significantly worse in 1999 and I actually started seeing doctors about it. I even worked as a copyeditor for VEDA for a couple of years in the mid-2000s, having been sort of recruited into the job. I heard so much about all those diagnoses (perilymph fistula, endolymphatic hydrops, labyrinthitis, BPPV…) in those years.
So much of what she said sounded so very familiar–the wondering what’s wrong, the search for a diagnosis, the difficulty continuing with your life due to dizziness and cognitive problems, being dismissed by doctors and getting all kinds of different diagnoses, right or wrong. I’m sure many of you could identify with the whole process, too.
Several months after my sudden hearing loss and worse dizziness (when I sneezed hard in July 1999), I was referred to a neurotologist here (Dr. Wilson) who thought, due to the sudden “trauma”-related onset, that I might have a perilymph fistula, which Sue was diagnosed with. (Unlike in her case, my hearing never improved; I remain with a severe-to-profound loss in my left ear.) Surgery did not confirm a perilymph fistula in my case, and through all the years I never got a diagnosis for the dizziness. Migraine was never mentioned, and whenever I brought it up with doctors, the idea was dismissed as a possible cause of my dizziness.
When I got the tentative diagnosis of perilymph fistula (PLF) in November 1999, I googled it (well, I don’t think Google existed then, but anyway I searched for info on it) and discovered an e-mail list called Dizzinews, and stayed up way too late that night reading, with relief and amazement and excitement. People who GET it!! They’re talking about BRAIN FOG!! I am NOT the only person in the world who feels this way! It’s NOT just that I need to get hold of myself, slap myself across the face, and just wake up and concentrate!
So I spent the following years of continued weird symptoms (some unrelated to vestibular/migraine stuff) and lack of diagnosis (I only saw doctors for about 3 years, then gave up, went back to the neurotologist in 2006 but still no diagnosis) reading a lot about dizziness and trying to figure things out. A number of people on the Dizzinews mailing list at that time were patients of this Dr. Black here in the Portland area, and it was a support group that he started that was the foundation for VEDA in I think the early 1990s.
Dr. Black, who was famous for working with NASA on vestibular science (astronauts in zero gravity and such) had a very devoted following among patients in Portland, but he was in conflict with other ear specialists here and also at least one insurance company because it was felt he overdiagnosed PLF. I saw (on the mailing list) so many of his patients diagnosed with this, but they never seemed to get well and most of them seemed to be on disability, despite sometimes multiple PLF operations followed by the kind of very restrictive weeks of bedrest described by Sue in the video. Many of them had migraines! But I don’t remember hearing any of his patients say migraine was taken into consideration as a possible cause of their dizziness. I think it is just not on the radar screen of most neurotologists.
(BTW, I noticed Sue kept referring to an “oto-neurologist”–not sure whether she meant Dr. Black or not. This is not the same as a neuro-otologist–also spelled neurotologist–although both specialize in dizziness. Some people use the terms interchangeably.)
PLF is a difficult diagnosis (ask ichbindarren here and probably others too), and part of the problem is that–as most of you know very well–vestibular symptoms can look the same across many diagnoses. Dizziness, vertigo, headache, nausea, spinning, motion sensitivity, tension, visual problems, sound sensitivity, ringing and pressure in the ears, hearing problems, cognitive problems, grocery stores… you can say it’s Meniere’s, hydrops, BPPV, perilymph fistula, vascular loop, mal de debarqement, or I don’t know what all, and there is a huge, huge overlap in symptoms. This is why the ear field has so many controversies, so many doctors who seem to have their own favored diagnoses that the majority don’t agree with.
Sue obviously has a long and complicated history and a severe illness, with some symptoms and circumstances suggesting migraine (onset in her 40s, recurring attacks, light sensitivity, and of course a clear history of migraine), but other symptoms, and presumably also test results, that don’t fit with migraine.
I too find it amazing that (to judge from her talk alone–the full story might very well be different) migraine was apparently never considered by her or by anybody. Maybe not as an explanation for all her symptoms (and we don’t know the specifics of her vestibular testing, which may well have shown things indicative of her other diagnosed conditions, and certainly BPPV is very specific and easy to diagnose), but with all the knowledge out there now about how common vestibular migraine is, and with her still so disabled by her illness and so clearly being a migraineur, you’d think someone would suggest a trial of prophylactics.
It was interesting because that mailing list (Dizzinews) was populated not only by a lot of Dr. Black’s patients all diagnosed with PLF and endolymphatic hydrops, but his nurse–who was also one of the doctor’s PLF patients–was also a member. So was Tom Boismier, a vestibular-testing specialist whom some of you may have seen on other forums. Tom is really smart and evidence-oriented, and I was shocked when he once said, early on, that he thought many of the undiagnosed people on the list were probably suffering from migraine-associated dizziness. Now I realize he must have been right! He was pilloried on the list for his skepticism that PLF occurred as frequently and as spontaneously as Dr. Black believed it did, and I remember some pretty frank exchanges between him and the nurse. Most neurotologists (at least in those days–I don’t know if it’s changed) were very skeptical or disbelieving of spontaneous PLF and only considered it in cases of clear sudden symptom onset with something like barotrauma, as in my case. (Sue had had the plane flight with a cold, but she didn’t mention feeling any sudden symptoms at the time of the flight and only apparently got the symptoms the next morning.)
So, to get back to the point, maybe the reason Sue never mentioned migraine in her talk is that no one ever suggested it to her as a diagnosis, as the famous Dr. Black had diagnosed her with PLF (and the diagnosis is a relief that desperate patients can really latch on to and then hang on to, because there is treatment for it–I remember thinking how lucky I was that I had a treatable condition and was going to get over the dizziness after the surgery, ha ha) and no one ever strayed from the set path of PLF, EH, and BPPV. And maybe those diagnoses are correct, but of course one REALLY has to wonder what a migraine drug might do in a case such as hers.
This was all no doubt TMI and of course only reflects my personal experiences and what I saw and heard during those years. I certainly don’t know anything about anyone else’s history, just my own. (And I am always very grateful that my dizziness problem is relatively mild and that I’ve been able to continue working through it.)
Julie, thanks for posting this link. Very interesting. The most important thing about it is that the nursing students heard how it feels to have a vestibular disorder, how difficult it is to get treated and diagnosed, and how it affects your life. Good for Sue for publicizing this and sharing her story. I could sure identify with her difficulty in talking with people, a crowd, for any length of time–that was a big problem for me in the past (not really now), and I’m sure many of you can too. That wasn’t easy for her to sit in front of a roomful of people and talk for an hour.
Nancy
