Let’s talk vestibular migraines

Let's talk vestibular migraine

I’ve had these migraines so long I remember when they were called MAV (Migraine associated vertigo). These migraines can be very debilitating. Try driving when you can’t walk. Not a good idea. Try walking when you can’t walk. When the ground suddenly just isn’t ‘there’ to your senses to you have to catch yourself on the nearest object or wall, or fall.

I am on Sibelium which works great for these migraines for me. Or it has. It stopped a bout that was a month long and since then my vertigo has been there, but mild and tolerable and usually motion triggered. But lately I have been having bouts of mild to moderate vertigo. And a Lot of dizziness. Hell, all of yesterday and now today I am woozy from the dizziness. I can barely stand at all. It is disturbing, to say the least. Add in the vertigo and it is extremely disorientating. I think they are not as controlled as they once were on this medication and that is unfortunate to say the least. I get the ‘unsteadiness’ often. I get the hard time tracking motion or having issues if I move my head too fast. Sometimes that sort of rocking sensation when I am sitting. All these remained on medication. But the moderate to severe bouts of vertigo and severe dizziness stopped. However, that seems to be shifting once more.

So what I have symptoms wise is:

Disequilibrium: the ground is moving, or the chair, up and down, so like a falling sensation. Mild: a vibration. Severe: I will fall if I don’t catch myself. Makes it difficult to walk

Extreme dizzy spells

Light-headed

Sensation of falling in my head as well

Motion sensitive with head motions, feels like world just keeps moving

Severe brain fog. Woozy feeling. No concentration. Spaced right out.

Vertigo

Update: I have had this since mid-November: So three months ongoing. Well beyond what the criteria says the max is.

What are vestibular migraine anyway?

Here is what the The International Classification of Headache Disorders, 3rd edition has to say about criteria:

A1.6.5 Vestibular migraine
Previously used terms: Migraine-associated vertigo/dizziness; migraine-related vestibulopathy; migrainous vertigo.

Diagnostic criteria:

A. At least five episodes fulfilling criteria C and D

B. A current or past history of 1.1 Migraine without aura or 1.2 Migraine with aura

C. Vestibular symptoms of moderate or severe intensity, lasting between 5 minutes and 72 hours

D. At least 50% of episodes are associated with at least one of the following three migrainous features: 1. headache with at least two of the following four characteristics: a) unilateral location b) pulsating quality c) moderate or severe intensity d) aggravation by routine physical activity 2. photophobia and phonophobia 3. visual aura E. Not better accounted for by another ICHD-3 diagnosis or by another vestibular disorder.
Vestibular Symptoms and qualifying for a diagnosis of A1.6.5 Vestibular migraine, include: a) spontaneous vertigo: (i) internal vertigo (a false sensation of selfmotion); (ii) external vertigo (a false sensation that the visual surround is spinning or flowing); b) positional vertigo, occurring after a change of head position; c) visually induced vertigo, triggered by a complex or large moving visual stimulus; d) head motion-induced vertigo, occurring during head motion; e) head motion-induced dizziness with nausea (dizziness is characterized by a sensation of disturbed spatial orientation; other forms of dizziness are currently not included in the classification of vestibular migraine). 3. Vestibular symptoms are rated moderate when they interfere with but do not prevent daily activities and severe when daily activities cannot be continued.

4. Duration of episodes is highly variable. About 30% of patients have episodes lasting minutes, 30% have attacks for hours and another 30% have attacks over several days. The remaining 10% have attacks lasting seconds only, which tend to occur repeatedly during head motion, visual stimulation or after changes of head position. In these patients, episode duration is defined as the total period during which short attacks recur. At the other end of the spectrum, there are patients who may take 4 weeks to recover fully from an episode. However, the core episode rarely exceeds 72 hours.

And unlike migraine with aura very few present with vertigo in the 5-60 min before headache aura zone of an aura. Which is the case for me, vertigo presents whenever it damn well pleases and often in the headache phase as well. Like it says duration can vary and mine vary widely from a few seconds to months. (Sebelium has conquered the month bouts)

Other symptoms:

  • Nausea vomiting
  • Motion sickness from seeing motion
  • Dizzy spells
  • Feeling light-headed

Treatments:

  • triptans
  • beta blockers
  • anti-seizure drugs (lamotrigine)
  • calcium channel blockers (Verapamil or Sibelium)
  • Beta Blockers

Outcome of vestibular migraine:

There was a long-term study published in Neurology in 2012. It looked at whether vestibular migraines persisted in the long-term (61 patients followed up in 9 years). Hint: overall they do, but can change in intensity.

The majority of patients (87%) had recurrent vertigo at follow-up.

Frequency of vertigo was reduced in 56%, increased in 29%, and unchanged in 16%.

Impact of vertigo was severe in 21%, moderate in 43%, and mild in 36%.

18% reported mild persistent unsteadiness.

18% had developed mild bilateral sensorineural hearing loss, which also involved the low-frequency range.

Source: The International Classification of Headache Disorders, 3rd edition

Healthlink

Pubmed

More on vertigo:

Perks of vertigo: not so much

Poem: Vertigo

What it is like cognitively with vertigo
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5 comments

  1. Hi, my son (13 years old) is currently being investigated for vestibular migraine. He has had problems for years and keeps being dismissed, despite suffering debilitating vertigo. He has taken so long to get our voice heard, that this is not school avoidance. He goes to school most of the time but the days he just can’t move for the vertigo, he can’t. He is currently going through an attack now, we seem to have no pre-warning. He goes to bed fine, the next morning, he feels so unwell with the vertigo. We have been given no clues,no medication and we can’t work out any triggers. Any advice you can give us in how we can assist him through these attacks? Would be very grateful, because until we get to see another consultant we are stuck.

    Liked by 1 person

    1. Without treatment it is very difficult to manage indeed I find. It just doesn’t respond to much. Something safe to try is ginger. Ginger tea. Ginger chew candies (gin gins). Another thing, since they are migraines… is the migraine diet. That is a bit more of a life change. But if he gets them s frequently, and man do I relate to that, then the diet might be a very good option to try. Google it and you will find information and books on it. If he is diagnosed there are specific migraine preventative medications used for vestibular migraines. I understand the issue with school… you can’t think with vertigo. You can’t function through it. In many ways, I think it is even worse that the pain a migraine can bring because you can’t escape it. I really hope you find help. Also make sure he sees an ENT for ear issues, but I am sure they have already investigated those vertigo issues.

      Like

      1. Thanks so much for your reply, ginger is certainly something we can do. Good tip about ENT, he was referred last week, so we will wait and see what happens there. At the moment not confirmed vestibular migraine, that is our GP’s hunch currently.

        Liked by 1 person

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