New to VM and this site

Hi everyone, late 50s old male in good health, very active indoors and outdoors. A month ago, I started getting what I can best describe as a persistent feeling of being off-balance and dizziness (no vertigo) with worsening tinnitus. It did not affect my daily workout routine but I felt unsure about going hiking and swimming. Initially, I had more bad days than good but in the past week or so, a mix of good and bad days so I guess it’s an improvement?

I met with PCP, ENT, neuro otologist, PT, and had normal head MRI, hearing, and balance tests. Will be doing the intense vestibular test next week for more insights. A few months ago, I had an aura episode going blurry in my left eye for about 15-20 minutes. The ophthalmologist suggested that it might have been a migraine which surprised me because I have no history of that nor do my siblings/parents. The neuro otologist suggested that it might be VM but I have virtually none of the main symptoms, ie., no headache, sensitivity to light, sounds, etc.

So I am just wondering if there are others with symptoms similar to mine and also diagnosed as having VM as no one knows for sure and there isn’t a test for VM per se. In fact, I thought I might be suffering from long covid which I had in July based on an article I read about dizziness and long covid.

Any insights are much appreciated. Thanks!

Sorry about your situation whatabout. You have discribed all the Classical Migraine symptoms , go to the International Headache Society classification. It sounds like you have had all the correct testing to exclude the dangers like a tumor. I had a very similar experience my NueroOtologist also told me I had VM. The problem is that this diagnosis ( VM) falls between two specialties Otolaryngology and Nuerology. Your best bet right now is to go to a Nuerologist who specializes in Migraines or just sees a lot of it. Oh BTW my NueroOtologist told me NOT to undergo any vestibular tests they will make you very sick add nothing and cost a bundle.

Hi Explorer, thanks for your feedback. I am surprised to hear that I have all the classical migraine symptoms since I don’t have a splitting headache and am not sensitive to loud sounds or lights. Shows you how little I know about migraines. I plan to see a neurologist next and like you said, ask for someone who specializes in migraines.

I wonder why your neuro otologist told you not to do the vestibular tests as it is recommended by both my ENT and neuro otologist to rule things out. I have already met my deductible so cost isn’t an issue.

My understanding is that VM is different than classic migraine in that many, if not most, sufferers do not have a headache. I have been diagnosed with VM or MAV as they call it now. I had one migraine in my life about 25 years ago and a couple episodes of vertigo with extreme nausea about 10 years ago. My primary symptoms now are dizziness and loss of balance. So far, the doctor has not been able to find a treatment that gives me any relief.

1 Like

@dj-okay Yeah, I have never had a migraine or vertigo. Apparently, my dizziness is all in my head so to speak as all of the tests including balance tests all came out as normal, so I am only feeling dizzy/top-heavy/headiness but not actually dizzy which is confusing to me. Do you have daily dizzy and off-balance episodes?

Actually it’s the other way around. MAV is the older name? It persists here partly because of how long some people on this board have had it (and were diagnosed a few years ago at least) and partly because it’s a better name, imho. Migraine is only associated with MAV which to me is a fairer reflection on the state of the science.

These symptoms are given new names every generation. If you were experiencing this in the 80’s they might have called it PLF, or 70’s, Meniere’s.

The thing is though, don’t be too taken in by the name, it’s just a diagnosis, based on criteria. It is not an aetiology: if you want to believe this is a migraine condition, please go ahead, but the reality is that we don’t know the underlying mechanism or cause. For sure migraine and neurogenic inflammation is one of the chief symptoms, but please don’t try to fool me that it is all migraine! For a start, the positional stuff has to involve the inner ear because there is no way the brain can tell what orientation its in or how fast it is travelling or turning without the inner ear (the symptoms do not magically go away when you close your eyes). So when you start getting vertigo at certain angles, that’s definitely not all migraine! Then some argue, oh but that’s migraine and BPPV … so you just spent your entire life relatively healthy then one day you woke up and got migraine and BPPV all at the same time?! Of course you didn’t, you got a condition called MAV and it includes both symptoms! The combination of symptoms gives us clues as to which organs are involved and that definitely include the brain and the inner ear.

The good news is that it doesn’t appear to be degenerative and people seem to recover, eventually, or it diminishes to simply being slightly annoying instead of life destroying (which is often how it starts out).

There’s loads more on this in #research-theories-controversies for members who achieve Trust Level 2 by engaging in the forum.

Oh and PS welcome everyone!

Basically, I am dizzy all the time. Sometimes that affects my balance, quite often actually.

I have only been working with this diagnosis for a couple months. I just saw the ENT again on Monday and when I mentioned vestibular migraines he said that they don’t actually call it that anymore. So you are saying it’s just the opposite. Gives me a little concern about my doctor.

A little background, I have been complaining about dizziness to multiple doctors for several years. Earlier this year I was diagnosed with thyroid eye disease and Hashimoto’s thyroiditis. I began the Tepezza infusions for the TED and my dizziness got worse. But because I was getting some relief from my TED symptoms, I tried to complete the treatment. After the fifth infusion (of eight), my dizziness was now profound, I suddenly had tinnitus constantly, and my hearing was diminished. My eye specialist halted the treatment. I have been dealing with those symptoms daily for almost six months now. The ENT believes they are migraine related and that the infusions triggered them. But so far, the medications he has tried have not given me any relief.

Please forgive my ignorance on the subject, I am very new to this. But to give credit to my ENT, he did direct me to this forum. :grin:

Maybe MAV is making a comeback? Lol

Some doctors were probably never convinced by VM. Perhaps that’s the case with your doctor?

I suspect there are several systems in the body that can influence the inner ear and make you feel dizzy. Sugar level, alcohol intake etc. Perhaps even migraines? The problem is when you add tinnitus, BPPV, “Magneto Head” and rocking you are looking at something more complex?

Just to say I have hypothyroid, but not autoimmune or Hashimotos, as you have. I’m a member of a UK based thyroid charity forum for all things related to thyroid and there seems a very strong link between vestibular/inner ear problems and an underperforming thyroid. There are a high number with tinnitus in particular, but also hearing loss, balance issues and migraines.

I’ve also seen that Menieres is more common with thyroid disorders. There’s either a lot of vestibular sufferers walking around with undiagnosed hypothyroidism/hyperthyroidism or more likely a thyroid malfunction can have an adverse impact on the workings of the inner ear. But why that should be I haven’t seen explained. I assume your thyroid levels are well controlled? I know Hashis swings as they are called, can cause hormone levels to fluctuate a lot.

My thyroid hormones are well controlled. As for my antibodies, I don’t know since I haven’t had that blood work since January.

This hasn’t been a good year for me and I don’t see it getting better any time soon :unamused:

Yeah, I feel that almost daily but I am not actually dizzy according to balance tests, did you have trouble with those tests?

Sorry to hear that and this is scary because a treatment actually made your condition worse. I wonder if anyone has the same lingering issue with the intensive vestibular test.

I haven’t had any balance tests or any vestibular tests

@dj-okay you probably need your own #im-new-let-me-introduce-myself intro topic? Feel free to post one

DJ-okay I have had the variety of symptoms you described over the last three years same age. I considered myself very healthy and active. Vestibular Migraine is is just what the name implies both a middle ear /vestibular part and nuerological part involves our brain,external peripheral nerves of the face, scalp, lining of nose, and even nerves of the neck muscles all connected electrically. There is a cascade of electrical events that start in or near our most peripheral nerves. The match or the switch that lights the fire is a series of chemical inflammatory triggers around nerve and brain blood vessels.The treatment is not based in the ear but in eliminating the inflammation caused by the triggers. This is where a neurologist who either has special knowledge of vestibular migraines or special interest in the area of migraines can help manage your treatment.

@Explorer Inflammation has become a very dirty word for me as it can cause all kinds of problems, do you have links to articles that talk about this? Also, by any chance did you get COVID before the onset of the symptoms? I suspect long COVID might have something to do with this as it casues inflammation.

Bob, Yes our bodies inflammatory response can certainly reek havoc on many of our organ systems. Hence keeping anti-inflammatory foods and products out of our bodies is so important. Viruses have long been know to be responsible for damaging our delicate hearing cells, with measles and mumps of just to name a few of these viruses. So it is it is not surprising that the Coronovirusis can do the same to our hearing and balance hair cells. If you throw in an aging body ( myself ) and aging immune system along with existing or predisposition ( risk factors ) to inflammation it is no surprice that this damage can then manifest itself as hearing loss, tinnitus, and vertigo and dizziness. The electrical system of these areas is all interconnected and it is very hard to identify when and where these agents/viruses caused their damage. The result is this creates a chemical imbalance stimulating inflammation in our end organs the otoliths, vestibular canals, and nerves sending messages to our brain. It is just incredibly complex and facinating. Here are a couple of references on Covid. BTW my hearing loss, vertigo, tinnitus, and dizziness started six months before the Covid outbreak in December of 2019.

file:///C:/Users/tgd19/Downloads/brainsci-12-00948.pdf

@Explorer Yeah, in my case, other than going blurry in one eye for 15 minutes once prior to getting COVID in July, I have no other symptoms of classic migraine, no sensitivity to light or sounds, no headaches, no vertigo, no hearing loss, healthy vestibular system (vestibular test confirmed this), and no actual dizziness/balance issue as other tests confirmed. However, I think the going blurry in one eye is a migraine sign which got exacerbated by long COVID worsening tinnitus and the feeling of dizziness.

@turnitaround @dj-okay Just a rant, it might be more befitting to call this something like neurological vestibular disorder rather than Vestibular Migraine since many people don’t have the classic migraine symptoms like headaches, sensitivity to lights, sounds, etc.

2 Likes