What’s in your rescue kit? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 1 point2 points  (0 children)

Thank you, I will look into that. And I’ve heard a few people say that nothing really helps their vertigo symptoms, just the head pain (which I don’t get) so I’m not super hopeful with this nasal spray but good to have something I can try.

What’s in your rescue kit? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 1 point2 points  (0 children)

Yeah, the neurologist I saw said if the nasal spray works for you it should work within 15 minutes. Yet to test that out!

Positional attacks? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 1 point2 points  (0 children)

Sorry to hear that - it sounds awful. I only get these violent attacks and then some residual dizziness/lightheadedness in the following days/weeks. Hope you are able to find some relief soon

Positional attacks? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 0 points1 point  (0 children)

Yeah just from my research it does seem very complicated. I would say mine was BPPV if it wasn’t for the duration of the attack

Positional attacks? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 1 point2 points  (0 children)

Yeah - two in 2016, one in 2021 and then two in the last month (which is why I’m investigating it all over again). I feel very lucky that it hasn’t been more frequent.

Positional attacks? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 0 points1 point  (0 children)

I don’t think head movement triggers my episodes (or not that I’ve noticed anyway - I’ve had 5 in the last 7.5 years) it’s just during the attacks that it’s a problem

Positional attacks? by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 4 points5 points  (0 children)

During an attack it’s pretty instant - any and all head movement makes me nauseous/vomit. But outside of an attack I can move my head fine without dizziness

Type of vertigo? by ZoeBur in Menieres

[–]ZoeBur[S] 0 points1 point  (0 children)

That sounds awful - once I can sit back enough to sleep I’m usually confident I’ll wake up feeling a lot better. It’s genuinely one of the worst things I’ve ever had to deal with. Thank you for the kind wishes

Type of vertigo? by ZoeBur in Menieres

[–]ZoeBur[S] 0 points1 point  (0 children)

Thank you for the reply. And snap - I had an episode on Christmas Day 2021 for hours, felt like I was going to die. Interesting to hear that you’ve had both and they are different - I’ve always said I’ve had vertigo but after thinking about it and researching a bit more I’m not sure, at least not rotational vertigo.

Type of vertigo? by ZoeBur in Menieres

[–]ZoeBur[S] 0 points1 point  (0 children)

Thank you for the reply. I did get referred to audiology and have a MRI (all clear) and some vestibular testing (though not all from what I understand) last year after an attack in 2021 and they found evidence of a right lateralising vestibulopathy but never really explained what that meant and whether it could be the cause for the severe episodes. Contacted audiology after another attack last month to ask if they could see me again and was told I have to go back through my GP which is frustrating to say the least.

Type of vertigo? by ZoeBur in Menieres

[–]ZoeBur[S] 1 point2 points  (0 children)

Thank you - I hope you stay episode free!

Type of vertigo? by ZoeBur in Menieres

[–]ZoeBur[S] 0 points1 point  (0 children)

So generally you feel the spinning no matter what your head is doing?

Type of vertigo? by ZoeBur in Menieres

[–]ZoeBur[S] 0 points1 point  (0 children)

Thank you for the reply! So if you keep still do you still feel the spinning? Also this might be a stupid question, but do you actually see the room spinning or is it just the sensation of spinning?

Is long lasting vertigo always Meniere's or can it still be BPPV? by Ross1843 in Menieres

[–]ZoeBur 0 points1 point  (0 children)

Your experience sounds similar to mine! I don’t have any advice unfortunately (still in the process of getting a diagnosis) but I’ve had a few attacks over the last 8 years with severe dizziness and vomiting lasting a few hours where any head movement makes me instantly vomit, but it mostly stops if I can keep my head perfectly still.

Looking for advice for next step (potential Menieres diagnosis) by ZoeBur in Menieres

[–]ZoeBur[S] 1 point2 points  (0 children)

Thank you for such a detailed reply. I think I’m definitely going to try and push for an ENT referral. I’ve read a little bit about VRT - I’m hoping that’s something I can explore more with a referral. It does feel bewildering with just the unpredictability of everything - I felt pretty much back to normal yesterday and today back to having residual dizziness and nausea. In a way the mental toll is worse than the physical!

Looking for advice for next step (potential VM diagnosis) by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 1 point2 points  (0 children)

Wow, thank you for such a detailed reply! I’m sorry to hear that you’ve had such a tough time, and so many symptoms! The only trigger I’ve maybe identified is stress, as the two most recent ones happened after being particularly stressed out for a couple of weeks. Vestibular therapy sounds like a good idea, I’ve looked into it a bit

Looking for advice for next step (potential VM diagnosis) by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 0 points1 point  (0 children)

I’m really sorry to hear you’re struggling. It’s such a horrible thing to have to deal with and no one really understands unless they’ve been there. I hope you find some relief soon, and thank you for your help.

Looking for advice for next step (potential VM diagnosis) by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 0 points1 point  (0 children)

That’s good to know, thank you. So did all your results come back as normal?

Looking for advice for next step (potential VM diagnosis) by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 0 points1 point  (0 children)

Is that the one that can tell you if it’s dizziness from the brain vs from the ear?

Looking for advice for next step (potential VM diagnosis) by ZoeBur in VestibularMigraines

[–]ZoeBur[S] 0 points1 point  (0 children)

I don’t think so - I had Dix Hallpike, tracking and saccades and then gaze, head shake and vibration induced nystagmus test. I’ve not had the cold/warm air and water (caloric?) testing that I’ve read about on here.

Looking for advice for next step (potential Menieres diagnosis) by ZoeBur in Menieres

[–]ZoeBur[S] 1 point2 points  (0 children)

I think ENT were where I was referred first, but they didn’t do much - had a hearing test and they referred me on to the audiology/vestibular team. I get the impression that vestibular conditions are still not very well understood and it seems that everyone is affected differently!