The Vestibular Migraine & Secondary Hydrops Community
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Attacks or a constant feeling


Yeah I played rugby and football for a long time, the first couple concussions didn’t really bother me much, but the last one really scared me. The migraines started shortly thereafter but weirdly enough the MAV didn’t start until about a year later


Well we can’t all put ourselves in cotton wool. Injuries are inevitable if you live a full live and I’m sure you have loved your sport. All the best with your recovery. I’m sure it’s possible!!


This seems to be common with a lot of people both on this forum and other forums. And for many people the dizziness and the headaches occur at completely different times. I think that’s why it’s so difficult for us (well, at least for me) to accept that they can both be caused by the same underlying condition.


If you didn’t have an ECog, how did they concluded that you have Meniers?


Oh gosh, this is a misconception I believe - Hydrops is not Menieres. Endolymphatic Hydrops can exist without Menieres. You can get it after trauma to the ear and due to other conditions. I do not have Menieres, my symptoms are very different (no classic LF hearing loss, no episodic hearing loss.). However, do I have a condition which is in the same spectrum as menieres with some of the same drivers? Maybe.

How does he conclude I have Hydrops? Mainly due to my history of symptoms together with all the other tests I took.


So I had my meeting with Doctor Hain. He’s an incredibly nice man and very easy to talk to.

He’s concluded I have some mild migraine with some slight right ear imbalance probably from uncompensation of the BPPV I had. Also some fluid in my left middle ear. To take some Allegra.

I did some testing. The one where they rapidly move your head while you stare at a dot, I passed. The rotatory chair test I did not do so well in. Hain said I had a lot of nystagmus and I was too dizzy while they spun me so I had to stop - he said this was likely migraine.

Question though - is nystagmus in the rotatory chair test or while following dots up and down normal in the dark? I passed the one that my local clinic gave me but this one I had nystagmus. I have a cold currently with some fluid in my middle ear, so wondering if that could be causing the nystagmus on this testing?

Any thoughts?



I would normally comment, but my lips are zipped up :zipper_mouth_face: because you went to see one of the best :slight_smile: :innocent:


Thanks lol. I wonder if nystagmus is normal in that chair… I mean you are with your eyes closed…


I get nystagmus sometimes with eyes closed - its your ears telling your eyes to move (when they shouldn’t). I wouldn’t be too worried about it. It happens less and less to me.


Wow, really? I assumed that if someone didn’t do well on the tests such as the chair test, that it would be because of the ears. I had no idea that migraine could influence the outcome of a test where you’re spinning in a chair.


I think we should leave this open to interpretation. I read this as ‘migraine syndrome’ causing it. As we don’t know the full aetiology we should leave it at that. As you know I have my theories …


Actually people with inner ear disorders do better on the tests as in they feel less dizzy while spinning… but I was on the other spectrum — I was extremely dizzy I couldn’t complete them. Probably because I have extreme motion sensitivity


I know you do


I tried to bounce on my friend’s mini trampoline once for fun (during my condition) … oh dear BAD IDEA, I shall not do that again!! Took me days to get over it (not kidding)


Hain wasn’t overly concerned with the nystagmus but said I should try to tackle each individually - ping pong of volleyball 30 minutes a day for rehab for my right ear. And lifestyle changes for the migraine. If that doesn’t work, take a low dose of Effexor


My husband’s kids were just here visiting and they all went to Orlando to go to the Universal Studios theme parks, which are filled with roller coasters. I did NOT go with them. For one thing, my osteoporosis is bad enough that I could sustain a vertebral fracture (I fractured last spring from coughing), plus it’s possible for me to feel like I’m on a roller coaster when I’m just sitting in a chair. :slight_smile:


Sacolucci, I am going to post some pics. Please review it and see if it makes any sense. Following are from a medical text book or professional journals


Few more :


How does one know you have nystagmus with eyes closed?


FWIW I can feel my eye flicking