New here--checking symptoms

I have struggled with vestibular symptoms since January and the doctors I am seeing seem to think it is a vestibular migraine, although they have not seen anyone with symptoms quite like mine.

My typical sequence starts with a “white noise” in my head that builds up over the course of about 24 hours and then culminates in a vertigo attack which can last for a short time or up to 4 hours. After the attack I get better and can go a day or sometimes 2 days with hardly any symptoms and then the white noise starts again.

Has anyone else experienced this type of sequence?

How would you describe the white noise? For example, many of us have some sort of tinnitus - a whine, a low hum, a whooshing sound, pulsing or other things in our ears. I also have visual snow which is sort of like looking through static. Sometimes my brain feels like its buzzing. So, you see, we have flavors of noise. Can you be more specific?

Thanks for the reply. I sometimes have tinnitus which for me is a high pitched squeal, but the noise that is most troublesome is just like a white noise machine running in my head for hours. Just a constant low humming. It doesn’t end until I have a vertigo attack and then my head is quiet for a day or two.

That might fall under MAV or Menier’s. Have you seen a neurologist or a neuro-otologist?

Hi

I’m struggling a bit here but can only assume, having checked out the dictionary, that the ‘white noise’ you refer to is tinnitus. Tinnitus is the word used to describe the perception of sound in the absence of any external sound. It’s pretty common. Because perception is very subjective some people find it more irritating than others. Nobody’s really sure of the root cause of tinnitus and there’s no cure as such as far as I am aware although some people do use white noise machines or loud music to mask symptoms.

As the medics think you have vestibular migraine for which I see you are taking Elavil and this noise occurs pre-vertigo attack could well be it’s a symptom of the hypersensitivity of your vestibular system much in the same way as other migraineurs become highly light sensitive and seek a darkened room. Most migraine sufferers are hyper sensitive to various environmental triggers in the same way many are ultrasensitive to certain foods. An increased sensitivity to sound is referred to as ‘Hyperacusis’, or more generally with migraineurs ‘Phonophobia’.

I’m no medic just a fellow sufferer but vestibular migraine does affect each patient differently. It’s a very individual experience it seems so I’m bit surprised your medics think your symptoms are unique. Vestibular migraine isn’t widely recognised outside specialist circles so maybe they haven’t seen enough cases to be representative as yet. They certainly knew enough to put you on a well tried and trusted preventative so see how it goes. If you aren’t confident in the diagnosis seek out a second opinion from a neurologist or neuro-otologist. Might be good idea before that to do a bit of research yourself and see how many vestibular migraine boxes you can tick. You’ll find alot of relevant info under the Welcome Section and links to other sites. Helen

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Increasing tinnitus before a vertigo ‘release’ is quite common. You can then have imbalance for up to 2 weeks and yes the whole cycle can start again.

At one point I was having attacks every 3 days but they died down. Not had vertigo attacks in well over a year now.

Continuing the discussion from New here–checking symptoms:

Thanks to all of you for your replies! I have been to 2 ENT’s and a neurologist (and an allergist, an accupuncturist, a cranial sacral practitioner and others).

“Increasing tinnitus before a vertigo ‘release’ is quite common. You can then have imbalance for up to 2 weeks and yes the whole cycle can start again.”

It is helpful to hear that idea of a vertigo “release” as that is what it feels like. Sometimes I feel draggy afterwards for a few hours or even a day, then I tend to have 1 good day and then the noise starts up again. It’s just so cyclical and NOTHING seems to make it come on or go away.

I’ll keep reading some other threads, but I really appreciate all your feedback!

Would you mind me asking what treatment helped your vertigo attacks go away?

Apologies if this is disappointing but I suspect they went spontaneously and the solution was just time :).

That’s ok–I can just hope for the same!

‘A vertigo ‘release’. Well that’s certainly a new one on me. That’s quite something after having MAV for 15 years. A new concept. Or could it just be your perception of it being an entirely new one to me. To me, the increased ‘white noise’/‘tinnitus’ would be an indication of a heightened brain sensivity which would then result in a vertigo attack after which things may again settle down. Whichever way one looks at it, it’s much the same I suppose but I think it helps to remember that vertigo - the illusion of movement - is a symptom indicating a problem with the vestibular system. It is not a condition in itself but a symptom of an existing disorder.

“NOTHING seems to make it come or go away”. It must have a root cause though. It may seem to appear-and disappear into the blue but, somewhere, there’s a trigger. Triggers can be delayed and/or culmulative so might be worth keeping a diary for a few months. Might give you some idea where it’s comong from. Helen

I know it’s not popular here, but honestly this whole where’d the migraine come from question seems obvious to me, especially for those of us counting decades of this - neurochemistry. What causes my PCOS and insulin resistance? Genetic defect in my cells’ ability to make insulin gates. What causes my MAV? Genetic defect in the function of my neurochemistry. Some things I do exacerbate that. Some don’t. Base defect remains. Meds, lifestyle changes and exercise help, but I’m under no illusions about my base state, which is a strangely optimistic but pragmatic, inefficient and suboptimally performing, sentient biochemical factory.

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Emily, there’s zero proof of that.

I got my MAV from trauma (and I’m far from alone in that)

We’ve had a case of someone having MAV from Otitis Media (who’s currently in recovery).

It’s very likely to differ by individual.

Hain says, when speaking about effectiveness of the drug “Amovig”:

“We also expect that it will not work in everybody with “migraine”. This is because Migraine is not a homogeneous condition, as it is defined by symptoms rather than molecular biology or imaging. This means it is a “wastebasket condition” resembling many other conditions defined by symptoms – including most of psychiatry.”

Yeah but any inner ear or trauma based theory describes almost none of my personal experience, which has nothing to do with trauma and relatively little to do with my ears. MAV is systemic and global for me. My ears won’t give me neuropathy in the extremities, IBS or brainstem aura. Ear issues, like sinusitis, headaches or a host of other issues are one set of a much bigger, interlocking group of symptoms. They correlate but do not describe causation.

I nearly laughed out loud when my oto-neurologist had the cheek to say “genetic mutation”. An absolutely laughable suggestion in my case.

Perhaps some people get genetic mutations (hey, they happen all the time), but it was pretty obvious that I’d injured my ear.

Given I then developed the exact same symptom spectrum 6 months after my injury to almost anyone with MAV it makes you think. It should make you think!

Anyone with a head injury too has not had “a genetic mututation” they’ve had trauma.

Given the body exists in a state of homeostasis, I would not like to bet how many other ways your inner ear can get ‘out of shape’ if things are pushed too far.

It’s not cheek if it’s true. Yours is trauma and just ears. Fine. Mine’s not.

She was, like many medics, reading from a textbook (containing the latest fashionable hypothesis no doubt) instead of using her brain to analyse the patient in front of her and their specific history.

This patient, me, has multiple known genetic defects with both local and global implications to my overall chemistry and function. This error, or maybe this group of errors, on a specific gene or on related genes causes too much of this protein, too little of that which in turn causes other chemical cascades and measurable physical defects. I without a doubt fit that mold and always have. Others don’t have my experience or maybe my etiology. Certainly they don’t share my unique biology any better than I share theirs. That’s ok, we’re not all the same.

That’s fine, but asking where’s the migraine comes from is imho a totally reasonable question in any case.

If you go most of your life (like I have) with having had only a single migraine, and then suddenly start to get flattened by them for hours on end every 3 days something BIG has changed.

Right, but I’m not talking about anyone else’s experience. I’m talking about mine.

Mine is lifelong - genetic and tied to neurochemistry.

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