The Vestibular Migraine Community

Vestibular Migraine


#1

My past neurologist has diagnosed me with vestibular migraine. I know vertigo is common with not having it but al of the sudden having an attack. Mine is the constant swimming in the head or spinning in the head & feeling of movement on being on a boat. But its not i don’t have it but then it happens. I have the swimming or spinning feeling & rocking back & forth on a boat feeling all the time. Have some of you experiencing what I am with it constantly not just attacks?


#2

Yup mine is always constant

The way my neuro described it to me is although the migraines aren’t constant, they cause enough fluctuation in the brain that the brain can’t properly compensate for the messed up vestibular signals before another migraine hits. This oscillation in signals is what causes the constant dizziness


#3

That explanation makes sense. But doesn’t explain the root cause of the unprecedented sensory fluctuation you never had before. Therefore I’m convinced that migraine is a reaction to some other primary issue.


#4

I agree with you all and I have the same feeling. My neuro told me to not beat myself up over what may have caused it or triggered it, because it honestly could be anything. I feel as though it is your brain trying to compensate on its own for the “weakness” of the affected ear and your eyes playing tricks on you. Good luck and hang in there!


#5

Yes, it does get better! I’ve halved my meds so yes, hang in there!


#6

I also have an answer for the primary cause as well (which a lot do not unfortunately) - I have a partial weakness in my vestibular nerve due to previous ear trauma of some sort.

This trauma could have happened at any point in time in my life and doesn’t necessarily have to correspond to when the dizziness started. I could have had full compensation for years and the one precipitating factor was the occurrence of the migraines.

For me personally I believe the trauma occurred from a major ear infection when I was 7 and I lost my hearing for two weeks. Now 23 years later the migraine portion of my brain has aggravated those signals resulting in the constant dizziness.


#7

That could also be a physical issue. I’ve noticed a MASSIVE correlation between the symptoms and treatment of ‘MAV’ with ‘Secondary Hydrops’. That latter was also my alternative diagnosis.

In my case this journey all started with trauma to my ear too, in my case very physical trauma when I stupidly pointed a shower into my ear, which lead to 5 weeks of acute dizziness and imbalance (though no hearing impact whatsoever). 5 months later, I ended up with ‘MAV’/Secondary Hydrops. It is thought that I injured my inner ear window creating a fistula which upset the pressures in the ear and eventually this caused significant symptoms but most of them after a delay. My symptoms became progressively worse for a while and are now in some kind of slow remission, though I’m not sure how much of this is compensation and how much of this is ‘healing’.


#8

Try using Silicone ear plugs 24/7 for a week and see if sound is causing the problem. If you have a fistula, every little sound make you dizzy.


#9

That is very interesting as if I get anything in my ears NOW, after the dizziness diagnosis, it definitely gets worse. I’m convinced mine happened due to a trauma as well. On a plane I flew sick which is a big no-no however I had no choice otherwise I’d be stuck forever where I was in a different country. Upon decent I had the most excruciating pain in my ears and it felt like someone was gouging out my inner ear and my jaw hurt so bad. It was a nightmare. AND, we had to do an emergency landing since there was a storm to be delayed, then to fly out AGAIN. Same thing, bad pain upon decent. Ever since I’ve never felt the same. Dizziness wasn’t instant but it definitely waxed and waned and now I get the full throttle. Isn’t MAV so much fun?:fearful::smile: @BHMaloney @turnitaround Funny though, because my old doc thinks I only have this because of a family history of migraines! Hope all of you are doing well


#10

@kelxsea_1. Your case sounds like a clear barotrauma during descent. Did you ask your doctors if the pressure could have triggered any leak ? Also did you do a VNG test to see how you fare for vestibular control in both ears.


#11

@GetBetter Yes I did. They’re still firm that its MAV and don’t want to risk any surgery to potentially do worse or nothing at all. Their silly egos. Hahaha it’s ok, preventatives in the meantime don’t bother me, I’ve gotten used to this laid back lifestyle… for now. :smile:


#12

I believe conservative is sensible in any case. Introduce me to anyone who has had success with the surgery and I might change my mind. I suspect if it is a physical injury the path to it resolving is more complex than a mere patch can resolve. The pressures involved in the condition may require the ear to ‘weep’ like some wounds do. If you patch it you might raise the internal pressure to artificially high levels and cause more problems. My only frustration is not knowing all the facts when i was an emergency case when it might have made more of a difference. But the first line doctors don’t have a clue so you are simply sent home with stemetil instead of seeing a specialist ENT. Pffff. By the time the initial big bang is over though you think you are Scott free and your local doctor feels vindicated. Little did you know the dragon has a tail …

The other related issues are that diagnosis is very tricky and lacks a quick conservative test. In addition the natural history is not well documented because a lack of a conservative tests means there is no way of comparing non surgical with surgical histories.

It’s taken me a loooooong time but I have compensated/improved quite a bit. Let’s hope the trend continues …


#13

Wow. Sounds like you’ve really thought it out. That is very true, I even heard that there are 3 potential outcomes to the surgery: success, unsuccess, unsuccess/deaf in that ear. And the success ir rate so it’d definitely be tough. It definitely is a risky surgery, not a lot of people want to risk it nor does the doc, it’s a tough situation!


#14

I’ve read sooo many papers and case histories. Whilst it’s great to be informed it can give you quite bad health anxiety so sometimes you just have to give it a rest and just believe that you will improve. So far, so good!!


#15

I’m glad to hear! I’m a firm believer we will all recover. I just hate that this diagnosis brings sooo much anxiety and everyone puts all of your feelings and symptoms down to “oh it’s just anxiety” etc. etc. :expressionless: you have to become an expert in your diagnosis to help you heal :seedling: (a seedling) I hope you have a great weekend! :tulip:


#16

Yeah this is just rubbish. The fact is that anxiety is DIRECTLY stimulated by dizziness AND on top of this you can easily get Health Anxiety on top as you describe …

What might have started as a relatively innocuous simple injury has so many physical, physiological and psychological knock-on effects its just not funny!


#17

I completely agree with you. It’s unfortunate those around us are muddled by the symptoms and put everything down to overreactions and overzealous responses. How’ve you been doing these days? How’s your fog and your life doing?

Have a great day,
Kelsey


#18

Kelsey, doing pretty good thanks, 2nd week without meds coping fine. Down at times as vertigo and annoying fluctuating tinnitus and minor hearing loss persists but few other symptoms. I was lucky and only had fog once. I take heart with the huge progress I’ve made though and intend to make a lot more! I hope this provides hope to you and others!

James


#19

Awesome! I’m glad to hear that. :blush: Keep the positivity flowing, definitely need more of that!

Cheers


#20

Hi there. I’m currently experiencing what you are. I’ve been so frustrated as don’t know how to explain the feeling, but I think you’ve nailed it.
I was off sick for about 8 weeks and went back at the start of August, but my symptoms have been constant this week so think i’m heading for more time off.
I saw physio last Thursday who gave me vestibular training exercises, but advised not to do them on my bad days as it would make it worse.
The constant brain spinning inside my head keeps happening when i’m in a shopping centre, so I dont know whether it’s the bright lights or crowds that do it or a combination of both.
I’ve also had the tinnitus in my ears and the feeling like they are blocked too and I’ve had that bad before. My neurologist put me back on a restricted diet of no dairy, eggs, caffeine, chocolate, citrus fruit, chinese food and processed meat. I was also taken off of prochlorperazine and am now only on Nortriptyline (9 tablets daily) now. I don’t know where to go from here appart from get my eyes tested to make sure it’s not visual