The Vestibular Migraine Community
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New here, just diagnosed, pretty bummed


#21

My symptoms started with an acute 5 weeks from the moment I pointed the shower into my ear. Then they disappeared mostly except for a fluid sensation and then returned 5 months later and escalated for 6 months.

I suspect the escalation was the issue getting worse due to healing process. As an imbalanced fluid gets trapped the pressure goes up and this pressure causes all sorts of symptoms.

Sounds like Secondary Hydrops to me. But that’s just my personal opinion. If you were in the UK I’d recommend my doctor who is very pragmatic.

Diet and treatment is identical to MAV though but knowing the source of the issue helps with dealing with it psychologically: getting a very serious migraine complaint out of thin air is just silly imho.

IMHO you are too young for anything age related so trauma has got to be an area of interest, as would something congenital …but if you’ve never had ear symptoms prior to that trauma, well …

Btw my old boss was hit on the head and knocked out during a basketball game. He took a flight 3 weeks later and became deaf in one ear … we have got off much more lightly and I believe there is a strong chance of full recovery.


#22

Welp, had the neuro opthamologist appointment today, I know you mentioned you had one coming up in June, not to be a downer but as I suspected that was a dead end, all parts of my eyes look good, which is good, but still feel like shit. No real plan of treatment moving forward from a opthamology point of view, he brought up mav as well, but wasnt ready to say I had it because he views it as a controversial diagnosis, so I guess that’s two specialists that lean that way. I’m hoping your appointment goes better than mine


#23

I’m kind of lucky in that my regular neurologist is happy to work with me. I come informed and she listens. I’m not expecting much from the neuro-ophthalmologist. I’m going because of all my visual symptoms and the fact that my migraines come with unevenly dilated pupils. My neurologist wanted me to see a specialist. We’ll talk meds, but of the three I’ve found to treat visual snow, only one is on my list of acceptable side effects/drug interactions. I have vestibular paroxysmia, too, but I’m unwilling to even try those meds.


#24

Emily,

I get mini spins too and VM is known to cause this. Are you saying you have VP based off your MRA ? Can you see a vascular loop on a MRA. This is not an area i know much about.


#25

Yes, there is a vascular loop on the left auditory nerve, visualized on a contrast MRA.


#26

That must be the understatement of the year! I’d feel more than ‘kind of lucky’ if I could have found ‘a regular’ neurologist. Sounds to me as if you just have hit upon a perfect arrangement.


#27

Yeah, ok, blessed beyond measure would be more accurate.


#28

What do you mean by bouncy vision? I’ve recently been having like an up and down bounce and if I look at one thing it seems like everything in my peripheral vision is shaking. Ive been diagnosed with MAV for 13 years and this is a new one for me.


#29

Hey dizz, my vision vibrates when I walk or run, and isn’t stable. It’s not so bad to the point that I can’t make out a face or sign when walking or running, but it is definitely a big annoyance and can mess up my equilibrium and what not a lot


#30

VRT helped me with that. Look up vision stabilization exercises. They are simple to perform and can over time get your eyes to stay trained on a target. Just go low and slow. Don’t let pain or dizziness ramp more than a level or two at any one session. I went from shying away from anything and everything coming in my direction, with severe visual vertigo, to fairly close to normal in six months. When I’m tired or unmedicated (Effexor XR 25 mg), it comes back strong, but there are large parts of every day where it’s pushed to the background.


#31

Hi

‘Bouncy vision’ - it’s called “Oscillopsia’. It’s common with all vestibular conditions apparently. Theory is the ears aren’t communicating correctly with the brain. It’s all a symptom of the migraine brain’s hypersensitivity. It can certainly make you feel queer too. Theory is as it’s a symptom once the migraine preventatives really kick in it should stop. Mine did, quite gradually. Some people @flutters particularly have had alot of success with Vision stabilisation exercises which are a part of Vestibular Rehabilitation Training (VRT). There is a concensus that VRT is best only attempted by migraineurs once their migraine is well controlled, usually this would be by drugs.

It’s a very long shot as you’ve already seen eye specialist who presumably would have checked your eyes for any misalignment but you could look into Vertical Heterophoria which can give similar symptoms to MAV and is controlled by prisms in spectacles. Unlike MAV, There are definite tests for VH although these do need specialist equipment which may/may not be available to you at local opticians.


#32

Hey flutt and Onan, I’m undergoing VRT and vision therapy now, seen a very small change. But only about a month and a half into both, so a long ways to go, I had vertical het rules out already, just upped ami to 50 mg from 25 mg. So I’m hoping I see more improvement eventually. Being a type A personality isn’t helping this much, very difficult to be so limited. I’m doing a lot of gaze stabilization stuff, and well as stuff with my eyes closed since like a lot of us my body is over depending on my vision for balance


#33

With Ami , The medics do reckon 6-8 weeks on the effective dose and that has to be one that controls the symptoms. So it’s early days for you I suspect. Take care with the VRT. Migraineurs usually find they need to take it slowly.


#34

MAV forces us to learn patience and take the long view. Very hard.


#35

That’s exactly what has started with me just within 2 to 3 weeks it’s so weird!!!


#36

Yea it’s a big pain in the butt. And really annoying, it kind of just happened over night last month for me, so I’m hoping it’s not due to some permanent bilateral issue and more mav/will get under control with meds


#37

Hammet89 that’s what I’m hoping!


#38

Hammet89 the prevalent symptom of MAV or vestibular migraine is dizziness not pain I’ve only had maybe 10 painful migraines in 13 years but I’m off balance every single day.


#39

turnitaround I’m a little confused about the hydrops from water? I am under the impression that hydrops (Meniere’s disease) is the build up of inner ear fluid, water could not make it past the ear drum or middle ear into the inner ear to cause this. Was it just the hot or cold water that sent you into a spin? They used to use water instead of air to do the ENG/VNG test.


#40

Hydrops <> Menieres. Menieres is an idiopathic condition in which Endolymphatic Hydrops can develop.

Hydrops of some nature can exist as a condition without it being anything to do with Menieres.

I pointed a shower into my ear causing an injury (punctured my inner ear with the stapes bone most probably). This we believe lead to a leak of Perilymph. The puncture heals to some extent but you are left with a fluid imbalance. This is a complex imbalance and I have written elsewhere about the hypothetical mechanism. The resulting condition is one of resolution and exacerbation as different influences bear upon on it.

So far it has improved over a long period of time (3 years!) but my ear used to leak every night. Now it does only most nights and subjectively much less.