Hi all…!
First post, nervous and all that jazz… I’ve been lurking for a little while, I’m on a desperate search for more information, support, and generally anything that will help me sort out this mess.
I got dizzy in July last year. It felt very much linked to my ears back then. Symptoms were constant dizziness, but with peaks here and there, nausea, constant tinnitus, occasional other ear ‘events’ like popping, whizzing, pressure changes, legs felt like jelly, palpitations - the list goes on, and I’m sure it’s very similar to a lot of you.
I was referred to hospital, and in the meantime wasn’t coping and had been off work for 2 weeks, so I went privately and was given working diagnosis of Meniere’s. It never really sat right with me, but I started taking Betahistine, and waited for NHS appointment. First one I had I wasn’t happy with, the clinic was a shambles, I couldn’t understand the Dr and I couldn’t guarantee she understood me either, so I went back to GP for referral to another hospital. Obviously this meant I had to wait another 3 months for that appointment.
Fast forward to January, I had had the odd week here and there where I was dizzy free, but had some of the other symptoms occurring like the ear events. Christmas really got me down as the tinnitus was raging. I had no idea what was going on, even though I was working with the diagnosis of MD. I had scoured the internet for information on MD, and it still didn’t sit right, so I was lost.
Had my consultation in January with Drs I felt I could trust, and she said straight away after my list of symptoms that she thought it was MAV. I was overjoyed, I’d read about MAV and felt that I sat better with that, than with MD. She gave me a piddly A4 sheet telling me not to eat cheese, chocolate, etc, and I was told to come back in 8 weeks and that I’d be given medication if I was still dizzy.
My first few weeks after that were some of the worst I’d had since July. From July to January, I was very slowly getting ‘better’, but very very slowly. Tiny improvements. All of those improvements disappeared, and I was in meetings at work while sailing the high seas again. I’ve wondered if it was the mental toll of moving from one diagnosis, MD, which while it didn’t feel right I’d still come to accept it, to another diagnosis of MAV, which I was thrilled with because it wasn’t MD.
After those first few tortuous weeks, where I developed a new symptom - blurry vision (so much so that I got my eyes tested lol), I visited my GP who prescribed Citalopram for anxiety as I wasn’t coping at all. Then, I was suddenly better. No dizziness. No ear events. Nothing peculiar to speak of other than occasional nausea. I went back to the hospital for my follow up, and he said “eat all the things you want again!”. If I’m dizzy withing half an hour, it’s a trigger. If not, enjoy. So I tried the things I’d eliminated, avoiding caffeine which I know is a trigger, and found I was fine! Hurrah! I went back to enjoying chocolate and cheese again. Still, things continued to be okay. Nothing weird happening at all. I got a new chair for work to improve my posture, and I even started to wonder if this was it, things were okay again.
I came off the Citalopram as I had nasty side effects, middle of May was my last tablet. I came off it slowly as advised by my GP to avoid withdrawal effects, such as dizziness.
I was hit by the worst dizziness I’ve had at the beginning of June. I realised later that it had been brewing since the beginning of May - little moments here and there; the lights in Costco and all of the people moving around, occasional dizziness walking around a shopping centre. Then it came on quite quickly, but it’s very VERY different. Where before, it felt linked to my ears, this time it’s my eyes. People crossing my path, indoor lighting, anything moving around me, ME moving around. I was off work for a few days, then had to struggle back in as I’m hitting sickness triggers due to the 3 weeks I had off in September, plus a week with stomach flu.
It has eased off, but it’s still here. The consultant told me I would get dizzy again, but it would get further and further apart, and it would ‘burn itself out’. He even said the tinnitus would burn itself out. I’m starting to doubt everything they’d told me. This doesn’t feel like it’s burning itself out, it feels like it’s ramping back up again. Just in time for its one year anniversary…!
As time’s gone on, I’ve realised MAV is not the saviour I thought. It was a much preferred diagnosis than MD to me at the time, but the more I live with this, the more lost I feel as it’s so confusing. Why would the migraines change from giving me ear related symptoms, to eye related ones? Just a note, I’ve never had migraine pain, and this recent flare up of dizziness hasn’t come with nausea (thankfully).
Does this sound like MAV?
I’ve never had any bloods taken, someone has suggested I get my B12 levels checked as they can cause migraines and a lot of other symptoms I have (some of which I haven’t mentioned as they’re not MAV specific).
Sorry this is so long (and yet it’s only scratching the surface of what I could tell you). I’d really appreciate any feedback you have, or advice. The NHS has not described to me what a migraine is. I’ve devoured websites like Migraine Action to give myself a sense of what I’m going through, but I have no idea when the actual migraine is occurring. Is it when I’m dizzy? And if that’s all the time, then am I having constant little migraines, or long ones which just continue one after the other?
Apologies for being so confused, and new at all of this - I have my next hospital appointment on the 11th of July. Four weeks is such a long time, but I’m hoping the dizziness will reduce in that time. It has gotten a bit better, then it got worse again over the weekend. I’m looking at Threshold Theory, makes more sense to me than one thing triggering me.
I will be asking my consultant for medication. And if he has any other things this could be, how can they be so sure it’s MAV when there is no test? That’s the bit I hate the most, the uncertainty.
Thank you for reading, sorry if it’s a bit all over the shop! Wanted to keep it as short as humanly possible, but now worried I’ve missed out important information 
Tracey x
