My story - your experienced thoughts on MAV working diagnosis please?

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 :slight_smile:

Tracey x

Your response to medication seems to be fairly conclusive. Sounds to me like you need to get some additional medicinal help, but as always discuss with your consultant.

My attacks and most of the nasty symptoms stopped within 3 days of taking amitriptyline. That made me confident of my diagnosis.

You need to work with you doctor to manage the condition but at the same time you need to avoid stress, eat well and get lots of healthy outdoor exercise.

Thanks for responding! I read that you shouldn’t exercise while having a migraine - so is that if I’m dizzy, I shouldn’t exercise? :slight_smile: Feels like I should be trying to exercise gently - walking, yoga. My eating habits could be a lot better, but I am working on that, and I’m chugging water like it’s going out of fashion just now.

Desperate for my appointment so I can discuss medication with him. I’m almost tempted to pay to see him privately, as I know he’s available at the Nuffield where I went in September.

Tracey x

Unless I’m having an attack, I try to get out as much as possible. Exercise is extremely important for so many reasons, and I see that as a key part of rehabilitation. It reduces anxiety, usually, unless it starts to make you nauseous. I have more good days now i’m on meds, but i had good days before I was on them. I use them wisely. My tinnitus is also much worse inside where it is quiet. I run quite a lot these days and have been on bike rides recently which cause me no trouble whatsoever - get out there! :slight_smile:

Edit: Interesting you were told the tinnitus would ‘burn itself out’ … looking forward to mine doing that!!

As soon as he said it, my mind called bull****. I can’t imagine my tinnitus ever going away, and I’ve never heard of anyone recovering from it either!

Yeah, i’m sceptical … i’ve been told things like ‘it may go once your anxiety levels are normal again’ … but sure … bring it on!

I loved the initial “Avoid stress!”

Erm, yeah… easy peasy.

Haha, yeah, how are you supposed to do that? Never love or work again??

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Can I ask your personal opinion? As nobody else in my life has any idea how it feels, so they can’t really advise (apart from my mam who has BPPV, but that means she thinks she knows everything about how I feel). If you were me, would you pay to see your consultant privately so that you’re seen quicker than the 11th of July, to ask for medication? I appreciate it sounds daft to pay £100-£150 to ask the same thing I’ll be asking in 4 weeks. But 4 weeks seems so far away.

I know it might seem impatient, but I’m not very confident that it’s not going to escalate. Having said that, I’m also trying really hard to stay positive and strong and make important changes, so maybe I can make it through.

absolutely I would … but I was lucky - i had insurance.

4 weeks of symptoms, some of which make you feel like death … or £110 payed … i’d definitely pick the latter.

However, do try and get a recommendation and check the background of the consultant.

All that said, some GPs are probably pretty well versed with migraine prophylaxis …

He’s supposed to be ‘the bomb’ - from several sources lol :grin:

While he’s very nice and patient and he let me ask all of my questions last time, I’m still on the fence. I’ll see how he responds to me now I’m dizzy again, I’m sure he’ll come through for me!

Thank you, I really appreciate it.

(PS, I’m not sure about asking my GP for migraine meds, as I feel like it would be stepping on the hospital’s toes…?)

if you are already seeing someone/propose to see them again, sure, don’t bypass them … that could appear disrespectful/distrustful … you need that relationship to work

I’ll definitely ask to see the same consultant as I’m seeing through NHS. I know he’s at the Nuffield, so I’ll specify him when I contact them.

Tracey x

One point to note … they are usually sensitive to costs … so you can ask your GP to refer you to them by name on the NHS when you are less in a hurry and already on your first successful med (if prescribed). However, once on a working med, you may only need email contact with them for a while, that’s how i keep up with my neuro. However, I still see one of her team for VRT, so she gets to keep tabs on me that way in any case … :wink:

It does seem to me, in my most cynical moments, that chronic dizziness patients are a licence to print money for these guys though!

This leads nicely on to my next question… so you’re seeing neuro about your MAV…? I’m still seeing ENT.

Should they not have ported me off to neuro when they diagnosed MAV?

Neuro-otologist at a specialist balance centre. I did get a second opinion from an ENT, but they drew almost same conclusion.

turnutaround - Do you think the Citalopram took away my migraines…?

Everything is very slowly falling into place… lol! I didn’t think about the Citalopram helping because it isn’t a drug which is traditionally prescribed for migraines, I was given it for anxiety. But a quick Google tells me it can indeed help.

So is it fair to say that I probably do indeed have MAV, and other more directed medication will hopefully help?

After reading the article which was shared earlier, my dizziness was intensely worse after I came off the Citalopram, same as the author. I really hope though, that I can find a different medication which will help.

That is very possible indeed. There are plenty to choose from, there’s a good treatment flowchart at the bottom of this page:

Note that good sleeping patterns help reduce risk of migraine … thats one of the reasons why i think amitriptyline works so well … it makes you drowsy and often secures a good night’s sleep.

I’m sure there’s been a correlation of poor sleep and migraines in my case … attacks receded for a while without meds for me when my sleep improved (whilst seeing a clinical psychologist btw)… but you can get into a vicious cycle of migraines, anxiety and insomnia …

I sleep well, mostly, but I do notice a difference if I’ve had an awful sleep. I’m going to ask my consultant next month if I can be referred to a clinical psychologist, I know I need help processing all of this. I’ve had generic counselling through work, but it was crap.

Thank you for existing! This forum is extremely helpful.

haha, my pleasure and yes, fantastic group of people on here and a wonderful modern website