Interesting research: migraine might be a culprit

But you need Hydrops too

This paper sheds a lot of light on what circumstances are required for an audio-vestibular attack and why the medications may work.

It also highlights the role of anti migraine medications in this fight:

James you were not wrong, you were half way there according to that very informative article as it is a combination of your ear theory and migraine, so well done you. Basically I am stuffed as I also have autoimmune pathologies!!! It is good to know what is going on though because in a good way we can now take steps to help ourselves when we feel more off than normal by shifting position to infuse our brains with oxygen, stop pushing too hard so we stop depriving our brains of oxygen in the first place, which is probably why it used to take me two days to recover from Nordic walking as I was obviously depriving my brain of oxygen whilst doing it. We now know we need to sit down when we feel dizzy so our brains and not our feet receive sufficient blood, etc, etc. Thank you James, your research is really helpful.:smiling_face:

One word of caution: this is just their hypothesis. The one glimmer of hope is if you find the right combination of meds and diet you may be able to stop attacks and compensate.

Last night I had exactly the symptoms they describe. I could literally start and stop my attack by lying down or getting up. Unfortunately that meant trying to sleep sat up. I couldn’t have dreamed of ever having such a ridiculous illness!

And more scary now: my symptoms are bilateral for sure. I now have had high pitched tinnitus in my good ear during two or three attacks. Work that one out!

And unfortunately not much of this explains the fluid I’m definitely getting in my middle ear. Answers on a postcard please …

A review of that paper:

Well the good news for me then is they have got all the meds exactly right, nortriptyline, calcium channel blockers and topiramate, exactly as they suggested!

I am sorry to hear about your good ear playing up too, that is just not on! Maybe, just maybe you need to add another med?

As for diet. I have always had a healthy diet my entire life so I know that is not a culprit. Ok yes I have the occasional bag of crisps but that is the ONLY ready made food in my home and I never ever have takeaways! (Very boring person!):grin: I don’t drink coffee, alcohol, eat chocolate, msg, citrus fruit etc,etc, etc!!! Yet it is only the above combination of meds that have brought relief. So I would maybe look into that James because it may just set you free. I am still aware that I have VM of course but nothing like I was before.

Well … i’m still not sure this is the whole story … if it were migraine, how come I (and I’m not the only one) am sometimes able to turn the attack on and off like a tap by sitting or standing up? They hypertension argument might stand up there … but how does one explain fluid in the eustachian tube?!? Also the tinnitus I get (if at all - so far its been rare) during an attack is very high single tone … not the roaring Menieres patients report? And I’m not sure how you tell, but I don’t experience any hearing loss when its happening …

My tinnitus changes to the roaring kind along WITH the high pitched whistle when I have an attack. And my hearing decreases to the point where I have to turn the TV up whereas normally my hearing is too acute. I completely fit their hypothesis except my hearing is still normal outside of attacks and I was tested and dismissed for menieres. They tried me on betahistine and it had no effect whatsoever.

The eustachian tube issues were explained to me at a hearing clinic as age related, in as much as they kind of sag (along with everything else :smiling_face:) as we get older and there is a kink which means they don’t drain properly until sufficient pressure builds up to straighten them and thereby releasing the fluid.
Also, if their hypothesis is correct we should be able to lessen an attack by lying down with our feet above our head in height so that our brains get the blood to reoxygenate it.

There’s more going on I believe because before the trauma I never had fluid in there. Also after a few days I get a stuck together feeling which breaks when I move my jaw as if it’s dried. No issues on the uninjured side. It really could be a recurrent leak imho. But that might not be the vertigo for sure (although vertigo is listed as a PLF ‘Thing’)

I dont tend to have a lot of hearing issues or imbalance from there but do get tinnitus. I think my ears are not perfect but the balance centre is all one big connection - so I just figure it is amplifying all senses and signals. Therfore we maybe thinking we are getting vertigo from our ears when migraine maybe the issue and vice versa…ive been drinking the odd coffee the last few days and havent had much worsening signals so I think it maybe not food triggers 24/7 - just if your centre is worse than normal then food triggers may push you over the edge. Ive noticed with my heart and blood pressure it goesw through cycles where it is near normal and then not…maybe the migraine and vertigo also wax and wane depending on your body chemicals and where your cup is…just a thought …paul.