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Does this sound like MAV for all those with experience


#25

Here’s a question which has me so confused. The Half Summersault Maneuver for BPPV seemed to work for me, at least for the spins. I laid down on my right side yesterday and no more spinning and nystagmus.

But would this have been the case if this is true vestibular migraine? Would an Epley or Half Summersault still work on positional migraine vertigo?


#26

Not heard of such a diagnosis. But BPPV can give you migraines …


#27

I;ve read that migraine associated vertigo can give you positional vertigo.


#28

I’d love to hear that logic!! :smile:

PS good to hear the spinning has stopped!


#29

Maybe, just maybe you had BPPV and not VM/MAV!!! Now wouldn’t that be good news. You would still get the headache migraine but maybe not all the rest of the rubbish that goes with VM. I do hope so.


#30

I have GAD and MAV and they are 100% related. It sounds to me you have both BPPV and MAV - one might be triggering or intensifying the other. With your history of migraines, it seems obvious that MAV is involved.

I would think less about whether it is one thing or another and try to get the symptoms under control. Especially when you have kids.

Luckily MAV drugs and GAD drugs can be the same. I was not on any GAD drugs when MAV hit, but now I am on 4. (I don’t recommend this!) But in controlling the MAV, the GAD is better. Even more so the other way around. If I am feeling almost 100% normal (and I do get close now) one panicky moment and the vertigo comes rushing back.

My main triggers are: elevators, stress, wine, caffeine, chocolates, and computers.

GAD and MAV drugs are amitriptyline, nortriptyline, effexor and other SSRIs and benzos for flare-ups. My Klonopin helps me the most but because it’s so addictive and makes me dopey at large amounts, I only take a little at night. 5HTP could work BTW; it was recommended to my by my psychiatrist, but it disagreed with my stomach. Any anti-anxiety could potentially help. Remember that benzos are also vestibular suppressants, so they calm the whole system down. Meditation is also good.

Supplements: riboflavin, magnesium, butterburr, fever few. Or take something that has them all like Migravent or Migralief.

Good luck!

I can’t believe I am giving advice. 7 months ago I was totally bedridden. Now I am almost able to function normally! And my mood is much improved from before the MAV set in.

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#31

Thank you for responding. When I read up on BPPV most cases are because of old age and inner ear wear and tear. I am young and have never had any ear problems or infections.

Some medical sites say that MAV can also be “positional.” Since doing the Epley, the spinning has stopped, but my off balance and the occasional head change dizziness is still there.

Deep down inside I can’t see why I would get BPPV without any trauma and my age.

Before the BPPV however, I was eating TONS of chocolate (a mood thing and an addiction thing) and just not drinking enough water, either. So I wondering if it is MAV mimicking BPPV.

Thoughts?


#32

Hi Lee, im 42 and recently diagnosed with vestibular disorder. I have weakening to my inner ear nerve and contact balance issues. I am currently going thru VRT and take magnesium, Vit D and B, Melatonin, lexapro, and i have diazepam to take once in a while. Do you have any advice for treatment? Are you currently going to VRT and is it working?


#33

HI ive been recently diagnosed with vestibular disorder. I have weakening to my inner ear nerve and contact balance issues. I am currently going thru VRT and take magnesium, Vit D and B, Melatonin, lexapro, and i have diazepam to take once in a while. Do you have any advice for treatment? Are you currently going to VRT and is it working?


#34

VRT was useless for me. Meds brought me more relief (Amitriptyline). I’ve been diagnosed with a fistula by one surgeon and MAV by a neurologist. I’m sure I won’t be the only ‘MAVer’ who actually has one. I actually believe time is the better healer than VRT. Just try to live as normal a life as possible with as little activity avoidance as possible and things may improve of their own accord, but it can take years as Ive discovered. I’m getting much better at the moment but it’s taken over 2 years to get here.


#35

I am just so confused by all of this. I know I had BPPV because the Epley triggered the spinning sensation in the right ear. After about 2-3 days of Epley’s I stopped having the real spinning sensations but I am now left with this unbalanced, swaying sensation and the feeling I used to have when I was about to spin.

It’s tough to describe, but before, when I titled my head to the right, I would get this rush sensation and then rapid spinning. As soon as I would change my head’s position the spinning would stop.

Now, I don’t have spinning but this vertigo/swaying sensation and almost like I am getting pulled in one direction. So I am wondering if this is residual effects of BPPV or migraine. Yesterday, I had a splitting headache and that may have exascerbated the symptoms.

Someone else suggested it may be mucus undetectable in the Eustachian Tube causing this. Like a type of hidden infection. Would this be possible?


#36

Otitis Media (infection in the middle ear) can cause dizziness but it’s usually detected by looking at the ear drum I believe. Some people get that so bad it actually breaches the ear drum and starts leaking out of the ear. Worth checking that out for sure.

I personally think a leakage from the inner ear into the middle ear would explain a lot of strange sensations like imbalance and vertigo. The vertigo could also be postional because it’s initiated with head pressure.


#37

I don’t have that because there was nothing wrong with ears. The ear pressure and hearing test were also normal.

The spinning has stopped but off balance and slight dizziness still lingers. Either it’s the anxiety now causing this or the brain is recalibrating.

What do you think? I had GaD before all of this and I constantly get anxious about being in public. I was just at a public pool feeling dizzy but when I got to my room I felt better.

It’s just so weird … the symptoms are slowly fading but I’m scared to do anything


#38

What test did you have that confirmed inner ear pressure was normal?

btw, from what I understand a leak doesn’t immediately lead to obvious higher pressure, only when the leakage starts to heal does the internal pressure rise to disruptive levels …


#39

I am not sure what test they performed, but it went along with my hearing test. He said there was nothing else it could be.

Well, today I had a bout of positional vertigo again pulling into a parking lot and after parking my car. Thinking the ear rocks have dislodged again, I went home and did the Epley but no spinning.

I just can’t believe its ear rocks causing this.

I was thinking about what transpired six years ago when all of this initially started. I was constantly looking down at the time, overextending my neck and it later felt like spasms in my neck (like a pendulum rocking back and forth).

Precipating this episode I have spent long hours at the computer sometimes more than 12 hours a day. I also constantly look down at my phone.

I am wondering if this can be coming from the occiput or my neck.


#40

Well you can certainly discuss that possibility with your specialist. Intriguing!


#41

Isn’t it? Why do I only get spinning sometimes when I look to the right? If it was the crystals wouldn’t it be all thte time?


#42

Head pressure increases when you twist your neck to its limits (I get a small amount of tinnitus sometimes when I do it). Could be wrong but I still think this could be a leak. They heal with time. Mine is just about healed after 2 years! The doctors don’t have a lot to go on and until you’ve lived with one of these conditions you don’t truly get them.


#43

The more you say leak the more I’m thinking That too. I am also 10 months post partum and I read it could be a fistula from pushing as well. Fistula’ also present with positional vertigo


#44

Is the test where they put a bulb in your ear and make it go very tight testing for pressure?