Hello, everyone! This is my first post and I’m hoping that some of you experts may be able to give me some insight as to what is going on. This is going to be long!
First of all, a poster named GetBetter suggested some definitions in another thread. I’ve added another definition of my own. So in my posts, here are the definitions of the terms I may be using:
- dizziness = light headed and feeling like you might faint. kind of like pre-syncope
- vertigo = spinning sensation like you are on a merry-go-round
- violent vertigo = sensation of tumbling end-over-end; impossible to stand; even when holding on to something it feels like you (plus what you are holding) are tumbling head-over-heels through the air
- imbalance = walking on foam/trampoline and feeling like tilting or pulling
OK, here goes. I’m female, now age 56. I started having episodes of vertigo around 1995. They were short, lasting a minute or two, I think. Afterward I would still feel “off,” more of an imbalanced-feeling, for several hours. It didn’t happen often, maybe once every few weeks.
I first went to an ENT but don’t remember much about what he told me. The episodes continued. Back then was when information was first starting to be available on the Internet. I had a computer and I think I was able to find a little bit of information about Meniere’s Disease. That led me to a university teaching hospital in the city where I lived. They had a specialist who was a neurotologist, so I made an appointment with him.
At the university medical center, I got all of the tests. The ENG, the rotating chair, and the tilting platform are the ones I remember. After all of those tests, he told me that most likely I had “vestibular neuronitis.” He said that I definitely did NOT have Meniere’s. I am pretty sure that he told me that the tests had shown that the balance system in one of my ears (can’t remember which one) was weaker than the other ear. His recommendation was to take Antivert (meclizine) when needed.
By then I had done some more reading and had found that a low-sodium diet had been found to help Meniere’s patients. I asked him whether it might help me, too. He was doubtful but said that it couldn’t hurt. He said the recommendation for Meniere’s was to keep the sodium intake below about 1500 mg/day.
Over the next 20 years, I did my best to maintain a moderate sodium intake. I continued to have short episodes of vertigo several times per year. I couldn’t ever figure out a trigger for them but it did seem like sometimes they would happen after I had traveled somewhere by airplane. At first I thought maybe the flying had something to do with it, but finally one day I realized that when I traveled I usually had to eat a lot of salty restaurant food instead of my own cooking. So then I thought that maybe my efforts at trying to maintain a low sodium intake were doing some good.
What always scared me about my episodes was that they came on suddenly, with absolutely no warning.
A couple of times when I had episodes that were fairly close together, I called the university specialist and he put me on prednisone for a week or so, saying that it sometimes helped “calm down” the vestibular system.
As more and more medical information became available on the Internet, I would periodically look for new information on vestibular disorders. I started to suspect that “vestibular neuronitis” was sort of a catch-all diagnosis, the one they gave when they couldn’t figure out what was really wrong.
In more recent years, starting maybe in 2014, while I still only had a few episodes a year, the vertigo was becoming much more violent. They still came on suddenly, with no warning, but I started to notice that some of them seemed to be triggered by a visual stimulus. For example, a few of them happened while I was using a computer. It seemed like when I moved my eyes from one place to another on the computer screen was when it happened. Another time it seemed to have something to do with my field of vision suddenly changing (I was a passenger in a car and it happened as we turned a corner and my gaze shifted).
When I say “violent,” I mean violent. Sudden and intense and something that you wouldn’t be able to endure for more than a period of seconds. One time I was seated at my computer when all of a sudden everything seemed to be scrambled and tumbling. I grabbed onto my desk, leaned forward, and I think I closed my eyes, but it felt like I was falling and the desk that I was holding onto was falling with me.
A similar thing happened another time when I was using the computer at a stand-up desk. When everything started tumbling, I grabbed the table but ended up falling onto the floor anyway, as it felt like the table was falling, too (it wasn’t).
I live in a different city than where I lived when I went through all of the testing back in 1998. There is a clinic here that specializes in vestibular disorders, so I made an appointment – this was in 2016. At the first visit, I gave the doctor a copy of all of the test results from 20 years ago and told the doctor that I had been diagnosed with vestibular neuronitis. He looked a little surprised and said, “for how long did you say you’ve had this?” I said, “Twenty years.” He told me that vestibular neuronitis was something that generally resolved itself within about six months. He then looked at the previous test results and told me that they didn’t really show a weakness in one of my ears.
He went on to say that since I went through my initial testing, a new disorder, “vestibular migraine,” had been discovered. He asked me if I ever had headaches. Well, yes, I did get headaches on a regular basis and had for years. But they never happened with the vertigo. (I’d get a headache maybe once every two months, and it would usually last about three days. For years I had thought that they were sinus headaches, because the pain would usually be on one side of my head, just above and behind one eye, and I would get stuffed-up sinuses especially on whichever side the pain was on. I even tried to take decongestants along with ibuprofen, thinking that would help, but it never did any good.)
He suggested that I go through a bunch of the tests again to see whether there might be wrong with my vestibular system.
So in 2016, I went through some of the same tests and some different ones, too. I had an MRI, which came back clean. They did a type of ENG, plus the test on the tilting platform, plus another one that I can’t remember at the moment. The tests are all much higher-tech today than they were in 1998.
After all of the testing, I went in for the appointment where they were going to go over all of the results, and, I hoped, provide me with a definitive diagnosis and treatment. I took my husband with me to that appointment.
The doctor went over everything and told us that all of my tests came back normal, which meant there was nothing wrong with my vestibular system. He then said, in sort of a dismissive voice, “so it’s probably vestibular migraine.” He acted like he had totally lost interest, since he hadn’t been able to find anything wrong with my vestibular system.
I said, “So, what am I supposed to do about it?” He told me to just take Antivert (meclizine) as needed when I had episodes. In other words, THE EXACT SAME THING I WAS TOLD 20 YEARS AGO.
Before that appointment, I had read up on vestibular migraine. It sounded a lot like it might be the new “catch-all” diagnosis when they can’t find anything else. Plus, it seemed too vague – it could manifest itself as dizziness, or vertigo, and might happen with a headache, or maybe never with a headache, and maybe with a visual disturbance, or maybe never with a visual disturbance, and so on.
I was very discouraged. These episodes are scary, and if I happen to be standing up when I have one, I am going to fall. I now have osteoporosis and a fall most likely will result in some sort of fracture.
The next time I saw my primary care doctor, I told her about going to the specialist and going through all of the testing. I told her that his diagnosis was vestibular migraine. The first words out of her mouth were, “Vestibular migraine? What’s that? I’ve never heard of that.” Sigh.
So here I am. I’m wondering whether anyone else has had super-violent episodes of vertigo, like I’ve had. And whether anyone else has had them without being associated with a headache at all. Whether it really is “vestibular migraine” or something else. And of course I’m interested in any ideas for how to prevent the episodes from occurring.
Thanks for listening, everyone!