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Migraine & MAV

#1

well, yes… although I think MAV is a migraine variant… but Ok, won’t go to that discussion for now. :slight_smile:
When I tell people what I have I tell them I have a special type of migraine…

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New MAV diagnosis
#2

MAV is a deprecated term.(happy to share the literature on this). VM is the more prevalent term. When a person is diagnosed with VM the physician means to say that migraine is causing the dizziness.This is consistent with every literature out there. The science is not there to say what causes the migraine. But the VM protocol proves that migraine is causing the dizziness and people go to 100% if migraine is squelched. Also in the future if science discovers an inner ear problem that causes dizziness it will go under a new name but VM will still be around unchanged. For instance there is a real world chronic migraine forum with 36K people and 60% of them complain of dizziness which proves VM is an entity in itself and is here to stay.

Usually for folks with VM, migraine is as much a daily problem as is dizziness. Sometimes the migraine aspect of VM is more bothersome than dizziness in some folks.

I strongly disagree that an inner ear problem causes migraine. I had a problem with my vision and did not get glasses and got headaches every single day. But i never got a migraine. How do you tell the difference ? Migraine causes aura. Migraine causes allodynia. Migraines causes IBS. These don’t occur in the case of a classic headache. Migraine is a sensory processing problem originating in the brain. The model of migraine originating in the peripheral organs is ancient thinking. There are a zillion new articles in the last couple of years on this. (Again happy to share).

Also inner ear disorder is incapable of causing Aura. Inner ear issue can cause gaze stabilization issues but not Aura. Aura is a migraine artifact. People in general confuse one with the other. VRT responds well to gaze stabilization issues. But VRT is a waste of time to combat aura.

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#3

Vignesh, this individual got a MAV diagnosis. Are you questioning the physician?

Having experienced that myself I can understand that completely.

You are more than welcome to your opinion. I also understand there is a lot of inconclusiveness around this. I didn’t however state any cause above. I was just advising care around the terminology.

One thing is dogma (current thinking, flavour of the decade, popular belief between a distinct group of physicians etc.), another thing is actual molecular scientific proof.

I accept that you could get upset to peripheral senses from some cause.

The fact that your eye swells during a migraine is very curious.

#4

I am saying MAV and VM are interchangeably used in the past. But the medical community as a whole is moving to VM as the more prevalent term. I never questioned any diagnosis. I learned this myself in the migraine summit. I am happy to share the transcript.

I tried stopping amitriptyline 4 times . All 4 times my migraines came back with a Vengeance and so did the dizziness. Unless Amitriptyline addressed the root cause of my dizziness , i cannot see any other way why the drug would work. Obviously Amitriptyline is not going to fix my inner ear.

#5

The inner ear is a neurological organ in part.

You and I both agree on the efficacy of that drug. It helped me tremendously. I did not injure my brain. I accept it may help the brain ‘cope’ or increase some threshold.

#6

None of us did. It is safe inside the skull. Migraine is a brain disorder not always caused by trauma but in some cases concussion can cause it.

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#7

Migraine obviously affects the brain. MAV on the other hand I believe it impacts the balance sense more directly.

#8

I have seen pictures of folks whose one side was drooping cause of migraine. I was glad mine just stopped with eye swelling.

#9

you are right. The pet scan for MAV(earlier post) shows the impacted area in the vestibular ganglion versus a regular migraine.

I have posted two separate papers

  1. One showing a PET scan of how the vestibular ganglion is affected.
  2. Showing pictures of how the inner ear is affected and it causing endolymphatic hydrops.

You were right about the hydrops piece all along.

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#10

Yes, so this is why i was cautious about the terminology.

MAV is a distinct beast to migraine, sharing some of the features, but is a separate diagnosis.

As to what is causing the migraines in the first place … and why they would focus on that part of the brain …

It is clear to me that peripheral upset can do it but sure, there are clear cases where it’s idiopathic. Most odd!

Also I feel the term ‘migraine’ vastly under describes the devastation of MAV. I appreciate some people get terrible chronic migraine, but MAV is way way worse than someone suffering from ‘the occasional migraine’.

(I will move this discussion into it’s own Topic soon :wink: )

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#11

This is an excellent article on migraine

My biggest takeway from this was causation and trigger are different. Migraine is brain misbehavior. Because you have a sensitive brain all the triggers affect you. There are so many people who do well in bright flourescent lights and their brain does not freak out.

Every person’s migraine is a distinct beast. No two people have the same symptoms with migraine. I have IBS, Allodynia, Aura and ETD. There are a zillion migraineurs who don’t have these symptom but new ones or a subset of these.

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#12

Seems like things work both ways though ie:

endolymphatic hydrops -> migraine

(reason: PLF (presumably leading to a degree of hydrops) results in migraine and sufferers follow MAV protocol, also we are told Menieres patients get migraine (though which is the route of causation you have to ask))

now we learn:

migraine -> endolymphatic hydrops

so presumably:

endolymphatic hydrops -> migraine -> endolymphatic hydrops?

and

migraine -> endolymphatic hydrops -> migraine?

#13
  1. Idiopathic can be
    migraine -> endolymphatic hydrops (not for all some people with VM have 0 ear symptoms)

  2. Trauma can be
    PLF-> SEH -> headache(i would not call this migraine).
    Infact John’s Hopkins calls this as a secondary migraine. Even in the VEDA page for SEH they don’t mention migraine.

  3. I think the most popular version is
    Vestibular Neuritis/labs -> incomplete compensation due to migraine-> lifelong migraine protocol

#14

Yes I noticed that. Though the literature states that migraine is common with people who have menieres (so might be related to endolymphatic hydrops).

I definitely believe this is incorrect. I have had all the neurological issues and even basilar migraines and my symptoms have been identical to MAV, save for additional HF hearing loss. Appreciate they have improved over time, so may be more of a different ‘trajectory’.

I’ll find the YouTube somewhere where a young lady had a PLF operation and her migraines went away. (but of course she could have also been on medication like amitriptyline).

#15

Are you sure you had basilar migraines ? Cos those are some very serious migraines.

#16

Positive. 3 times. Lying in bed for 14 hours, back of head pulsing and very hot, unable to move an inch. Definitely not a headache. Amitriptyline stopped those dead.

#17

Sounds like basilar migraines

Interestingly basilar migraines have almost all MAV symptoms too

  1. at least two of the following fully reversible brainstem symptoms:
  2. a) dysarthria1
  3. b) vertigo2
  4. c) tinnitus
  5. d) hypacusis3
  6. e) diplopia4
  7. f) ataxia not attributable to sensory deficit
  8. g) decreased level of consciousness (GCS ≤13)5
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#18

Exactly, another thing I noticed.

#19

Bear with me i am thinking out loud. What if there was no PLF and is there a possibility that your ear shower fiasco triggered migraines ? Similar to how Erik @ander454 threw up during his VNG where they pump hot air into the ear canal. After my VNG i had terrible imbalance for 2 to 3 weeks.

I was under some of the worst stress the year before MAV due to all kinds of reasons. Did you have a similar stressful period prior to MAV ?

#20

I’m prepared to accept other possibilities (afterall there’s no proof of a PLF) but the hearing loss is in the traumatised ear and the ‘fluid’ sensations occured a day after the trauma and 12 months before my first full on migraine.

Stress could definitely have been an exacerbator, I was in a pretty stressful job.

I do wonder however if there is some ‘autoimmune’ issue that was triggered in the ET.

It’s all such a complex issue.