Hi, sorry if this should be tagged on to another chat, I did search but couldn’t find anything that matched specifically. Anyway, I’ve had vestibular issues since being hospitalised in 2019. I take Amitriptyline 20mg daily, plus the usual magnesium, riboflavin and lifestyle adaptations and that keeps me balanced enough. Betahistine has helped when I’ve been really unwell. My vestibular symptoms have evolved a lot since 2019, which I know is usual. However, back in August, I had a different type of ‘attack’ whilst on holiday in Canada. I suddenly got double vision, possibly triple vision, my speech became very slow and garbled, it was as if I was incredibly drunk. I lost all coordination. My husband got me home and to bed, and the next morning I felt much better, albeit shattered and a bit freaked out. We put it down to jet lag. Nothing like that has happened since, until last Friday. Same thing - vision changed, couldn’t speak, lost all coordination. My husband put me to bed, but this time I am still struggling a week on. On top of the symptoms from Canada, I’ve got all the usual vestibular stuff - nausea, ear ache, ear fullness, swimmy headed, exhausted, my scalp is bright red and itchy (which is a usual sign for me that my vestibular system isn’t happy), I’m struggling to focus on anything for any length of time, it’s still difficult to get my words out. I look like death! My pharmacist suggested I start the Betahistine slowly again and see if it helps, but I can’t deny I have been completely knocked sideways by this and am really worried about it happening again, and being worse next time, as this has been a particularly scary experience. Has anyone else had anything similar? Is this still vestibular migraine/PPPD? My insurance company will no longer pay for me to see my consultant so we have to self fund and unfortunately can’t afford to do so at the moment. GPs are next to useless with this sort of thing. Would be grateful for any thoughts, advice, words of wisdom etc. Thank you.
Your symptoms sound potentially serious. You need to make an urgent appointment with a medical professional. I worry that trying to diagnose this on an online forum is risky. Please let us know how you’re doing.
I wouldn’t get too panicked. It does sound like an escalation of an existing condition.
I would double down on migraine diet (definitely no caffeine or alcohol!), healthy sleep patterns and daily walking outside and see if you can calm things down.
interestingly this is how my vestibular migraine began, with a major, nuclear-level aura like this. that being said, these are considered to be ‘non-specific’ and don’t really point to any concrete diagnosis.
you should really have any changes to your disease evaluated by a consultant, although if you are returning to your neurological baseline between these attacks, they are most likely an evolution of the vestibular disease.
a GP would at least be able to rule out imminent threats to your health
Thanks so much all, I really appreciate your responses. I’ll log a call with my GP to rule out anything new, and will cut out all the usual vm diet triggers again, although it tends to just be MSG and yogurt for me, historically. I think I’ll also email my consultant’s secretary, see if she thinks it’s worth me seeing him. Thank you! Just when you think you’re on top of all things vestibular, it goes and throws a curveball. Frustrating!
you might also consider increasing your dosage of amitriptyline per conversing with your physician.
So sorry this is happening to you. These symptoms are very similar to mine when VM is bad: difficulty speaking , difficulty walking or even sitting up and a terrible headache. It’s rough. I have slowly improved with a combination of preventatives and abortive medications. Good luck.
Thank you, it’s a relief to know I’m not alone in this. Going in to work for the morning today, can’t deny I am worried about this happening again. I can’t work out if I get any warning signs, so far I don’t think so which is what makes it scary. What if it comes when I’m not at home or am by myself? Do you get any warning at all?