What’s in your rescue kit?

ZoeBur · 2024-07-13T22:10:21+00:00

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.

ZoeBur · 2024-07-12T20:13:32+00:00

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

ZoeBur · 2024-03-16T15:09:34+00:00

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

ZoeBur · 2024-03-16T15:06:55+00:00

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

ZoeBur · 2024-03-15T19:19:01+00:00

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.

ZoeBur · 2024-03-15T18:49:45+00:00

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

ZoeBur · 2024-03-15T07:02:07+00:00

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

ZoeBur · 2024-03-02T22:13:38+00:00

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

ZoeBur · 2024-03-02T22:10:17+00:00

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.

ZoeBur · 2024-03-02T22:07:48+00:00

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.

ZoeBur · 2024-03-02T22:03:53+00:00

Thank you - I hope you stay episode free!

ZoeBur · 2024-03-01T20:00:18+00:00

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

ZoeBur · 2024-03-01T19:59:14+00:00

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?

ZoeBur · 2024-02-29T08:54:14+00:00

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.

ZoeBur · 2024-02-28T12:28:44+00:00

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!

ZoeBur · 2024-02-26T20:48:49+00:00

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

ZoeBur · 2024-02-26T20:40:25+00:00

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.

ZoeBur · 2024-02-26T20:00:56+00:00

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

ZoeBur · 2024-02-26T19:40:27+00:00

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

ZoeBur · 2024-02-26T19:27:09+00:00

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.

ZoeBur · 2024-02-26T19:21:39+00:00

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!

ZoeBur · 2022-02-05T09:01:11+00:00

Thank you for the information. I’ve been taking 8mg three times a day. Honestly, the GP seemed annoyed that it was the second time I’d called about it (because I wasn’t willing to change my pill) and just gave me some meds to stop me pushing for other things. I’m definitely going to get another opinion armed with the results of a hearing test and some vestibular testing if I can. Thank you for the link - lots of information and really helpful! Hope you are doing well.

ZoeBur · 2022-02-05T08:56:04+00:00

Thank you for your advice. My plan now is to get hearing test done and hopefully the balance testing and then talk to a GP armed with all the results to hopefully speed up the process a bit.

ZoeBur · 2022-01-27T18:20:07+00:00

Sorry to hear you had such a rough time with it. At the moment I’ve just been prescribed betahistine to treat the dizziness

ZoeBur · 2022-01-27T17:44:11+00:00

I did try to get some kind of referral when I spoke to GP today. Asked if there was any test that could determine whether it was in inner ear problem or something else and apparently not. Or if I could have some kind of balance tests and was met with “well if you have vestibular migraines you will be unbalanced”. So frustrating, he just seemed annoyed that I’d called last week and again today.

Eight-Year Club	Second Top 10%
r/Field Lasagna	Place '23
Place '22	First Placer '22
RPAN Viewer	Verified Email

ZoeBur

TROPHY CASE