MAV or mad :(

Hi everyone. This place seems very friendly so I thought I’d post what I posted earlier on another board. Can anyone tell me if my symptoms sound like MAV or some other vestibular condition or if I’m just mad :frowning:

  1. Visual - this is one of the main things for me. I feel like I can’t see properly 24/7. I find it extremely hard to explain what I mean by that, and there are a couple of different facets to it. One is that I feel like I can’t focus properly. Another is that things go dull or dark (especially if I look at one thing for too long). Another is that I can’t seem to see around something like I used to. What I mean by that is that if I’m reading for example, I feel as though I am only focusing on one letter at a time, whereas I should be seeing the bigger picture.

  2. Dizziness - this is the other main part of it. I feel dizzy in some way or other 24/7. It’s either just a niggling feeling of being off-balance or of leaning (when I’m not) or it’s worse. I always feel light-headed. I also have episodes which absolutely scare me to death where I feel like I am about to faint. I’m sure if I didn’t stop whatever I’m doing I would faint but I’ve never tried it. This happens when my eyes are over-stimulated (I think) like if I’m walking and seeing everything passing, or if I’m in a shop looking at things and moving my eyes too much. It’s awful and it’s happening more and more, and it’s the main part of what stops me going out.

  3. Brain fog - this is also with me 24/7. My concentration is zero. I can hardly even follow Eastenders anymore. I can’t read anymore really because I can’t take it in or make sense of what I’m reading. It’s very scary and has even lead me to wonder if it’s some kind of early dementia. It sounds a bit ridiculous and far fetched but it’s honestly how I feel. One of my kids asked me who the Prime Minister is the other day and I didn’t know. I can’t put names to faces. I can watch a film and then not be able to tell you the storyline afterwards.

  4. Memory - my memory is awful. I forget everything - what I need to do, where I’m meant to be, appointments, things for the kids, everything. The amount of stuff I forget is embarrassing and I even try to cover up for it by pretending I’m joking (like not knowing who the Prime Minister is). The other day Patrick Swayze came up in conversation and I didn’t know he was dead. I mean I did know once but I forgot. The same thing happened with the Queen Mother. As I am typing this now, I’m realising how stupid it all sounds, and I’m wondering if I’m deluding myself by thinking it might be a vestibular thing. It is sounding more and more like some nasty degenerative brain disease which is what I really fear.

  5. Constant feeling of not being comfortable - this is weird and is something I’ve only been noticing over the last few months. I am constantly moving - both in bed and when I’m just sitting in the living room. It’s like when you feel uncomfy and you change position - but I’m doing it too much - like I can’t sit still for more than a few minutes at a time.

  6. Constant feeling of being ‘not normal’. I feel offbalance which makes me feel like I’m walking funny. I feel like I can’t hear myself properly so I think I’m talking funny. I feel as though I’m saying things wrong or getting my words jumbled up or something. My other half says I’m not but I still think it. I feel like I’m acting all the time. When we go out I have to act normal and just wish it would hurry up so I can get back home and relax a bit. I feel like I’m pretending to look and people and listen to them. Really I’m just watching their mouth move and saying ‘yes’ at the appropriate time - it isn’t going in - I’m too worried about feeling dizzy and worrying that I might faint any minute, and wondering when I can get home. Half the time I have no idea what the person has said to me, and I would not be able to relay the information to anyone else. I feel constantly confused.

  7. Bladder symptoms - whether or not this is connected I don’t know, and to be honest I guess it isn’t but what the hell - I’ll include it anyway. I feel almost constantly like I need a wee. The worst time for this is when I’m in bed trying to get to sleep. I’ve had scans and stuff, and they all came back clear.

  8. Depression, anxiety, panic and agoraphobia - as far as I’m concerned all this has come about as a direct result of the vision problems and dizziness. The doctors I have seen claim that it’s the other way round, but I know myself and I know that the vision and dizziness have robbed me of my life and made me unable to function normally. I can’t go out alone and I am in a constant state of anxiety and dread and worry about feeling dizzy and about what’s wrong with me.

There are other symptoms but they aren’t all there in my head right now, and they’ve been there for so long that I almost forget what’s a symptom and what’s not if that makes sense :cry: Thank you for listening xx

Hi Sally,
You could be a poster child for migraine. I just shared some information with another on the topic and would like to share it with you as maybe it can help. This is only scratching the surface since migraine can be rather complicated. But it’s a start.

There are many things to try to find relief and manage with migraine. Some are very effective with self-help and learning how to identify what is tripping the migraine mechanism and avoiding those triggers, for others its a bit more complicated or beyond their control to manage entirely on their own and find medications to be helpful along with avoiding things that aggravate migraine. Check this out also…

Thank you very much for that - I will have a read through of those threads.

I forgot to say that this has been going on since my teens, and I’m 38 now. Isn’t that too long for 24/7 mav symptoms? I have had better times and worse times over the years, but it’s ALWAYS there to some degree.

It would be amazing and weird to get an actual diagnosis of something after 23 years of going round in circles and being told I’m a chronic depressive, anxious, paranoid, panicky mess!

WoW! You sound SO MUCH like me! The stores,…ME TOO!!! I go out to a store with my hubby, cause i wont go alone hardly ever and I spend 20-30 minutes in the store and it wipes me out, I have to go home and relax. I also feel faint and like I might pass out, its very real! I have been told its Panic Disorder… anxiety…BPPV, but that dont explain most of my symtopms!

Anyone I know how your feeling, its been 13 yrs on and off for me, and here I am now 6 kids later and Its been a LONG time that I have not had a BREAK from it! AWFUL I HATE this!!!



I completely know where you’re coming from. It’s totally possible to have MAV from your teens till your 30s. My MAV started at 18, I’m 43 now. It hasn’t been continuous since then. It was pretty continuous from 18 to 23. I nearly had to drop out of uni. After graduating, I had to go back home to live with my parents. It was awful. I thought I was dying. I remember watching an episode of Neighbours in 1989 with Mike and Jane in it and I didn’t think I’d live to see the end of the programme.

I was diagnosed with anxiety, stress, somatisation, hyperventilation syndrome, you name it. I had tests to rule out epilepsy (I often blacked out during an attack). No way did I have migraine as migraine didn’t last for weeks on end (!) I had psychotherapy. Nothing worked. I felt my life was over.

Then I got lucky (ish). I saw a psychiatrist who didn’t think it was ‘in my head’ and felt I had basilar migraine. She got me referred to The National Hospital for Neurology and Neurosurgery where I became an inpatient in 1991. MAV had still not been ‘invented/discovered’ and they concluded I had basilar migraine and told me to stop eating aspartame laden food and drink.

I was feeling a bit better anyway by this time (at last I had a diagnosis I believed), and cutting out the aspartame did the trick and the whole dizziness crap went away.

I then had about 13 dizzy free years during which time I trained as a Speech Therapist at the same hospital I’d been a patient in, got married and had twin girls, and worked as a speech therapist part-time. During this time I developed panic attacks, which were successfully treated with cognitive behavioral therapy (CBT).

Then, in 2004, when my girls were 2, the health visitor was visiting us and I suddenly felt a bit migrainey, with a feeling of intense pressure behind my eyes and at the back of my skull. Then the dizziness started. My period was due that day. I thought it was the end of my world. I couldn’t believe it was back. It lasted a few days and in the years that followed it came and went, usually lasting a week or so but sometimes knocking me for six for a month or more. I saw ENTs and various GPs and was told it was anxiety, stress, ‘all in my head’ etc. It got really bad in about 2008 when I was absolutely convinced I was losing my mind and had a degenerative brain disease, like Alzheimer’s, which I’d seen ravage many of my patients’ minds. I then became obsessed with the idea I had vCJD (mad cow disease!!!) and was sure I was dying. I couldn’t think straight or multitask or look after my kids. The doctors said it was the panic disorder returning. Load of crap that, as I never got dizzy during a panic attack - they were a totally different experience and didn’t last for weeks on end!

My GP at the time was useless and pretty nasty. I ended up paying to see an ENT privately who diagnosed me with Meniere’s. Hurrah! I had a non-psycho diagnosis. My GP lied to me and said the ENT report had said there was nothing wrong with my ears/balance. I demanded to see a copy of the report and he had written likely Meniere’s, possible migraine variant. I could not believe my GP had been so negligent and immediately changed GPs.

The diagnosis of Meniere’s never felt quite right and a year later I went to see an otoneurologist who was a friend of a friend at The National Hospital (my old stomping ground - I thought I might as well rent a room there :slight_smile: !), who confirmed MAV.

So basically Sally, I think you may need someone you trust to confirm you have MAV or migraine variant or whatever name they want to give it - it’s all the same thing really. It sounds from what you’ve written like classic MAV. But we’re not doctors here, so I would urge you to get that diagnosis quick! It seems they’ve ruled everything else out so be rest assured it’s nothing sinister. MAV isn’t sinister, it’s not strange or ‘one of those mysterious illnesses’ - it’s a well researchd well-documented scientifically-based real disorder/disease and there are plenty of folk who have it as this forum can testify. None of us are mad (well, with a few exceptions :evil: ). We are all like you… Our symptoms vary a little between us but we’ve all been where you are now.

So find a neurologist who specialises in migraine, or, even better, an otoneurologist and get this diagnosis confirmed and get on the right meds. Meanwhile follow the diet and lifestyle guidance available on this board.

Best of luck and keep us posted.

Dizzy Izzy x

So sorry you are having to deal with all of this. Most of your symptoms deffinitly sound like MAV. Not sure where you live, but a visit to a headache specialist, or neurotologist with facts about MAV in hand, might help. I hope you figure this out quickly so you can start feeling better. Getting a diagnosis is half the battle!

Thank you so much for that.

I will definitely try the dietary changes although I don’t think I have much aspartame. I do drink tea so I will cut that out. I hardly ever drink alcohol because I’m very sensitive to it - it pretty much sends my symptoms crazy if I have more than a couple of drinks.

I can totally relate to the cjd thing. I haven’t touched beef since that all came out in the news years ago. My children don’t eat it either. It’s something I’ve been paranoid about - I’m paranoid about anything like that. Pretty convinced that I have something like that - cjd, brain tumour, early dementia, ms, some kind of brain disease. I just figure it hasn’t been diagnosed yet. I know what you mean also about thinking you’re dying. I remember a few times - one in particular when my son was a few months old (he’s 10 now) - I remember sitting in my bedroom on my own, everyone was downstairs and I couldn’t come out of my room or face anyone. I felt so strange - so dizzy and detached and not right - I was 100% convinced that I was dying. I remember thinking to myself - if I’m still alive or not completely mental and in a home or something within a few months then maybe it isn’t something in my brain. I thought I couldn’t possibly feel that bad and stay either a) alive or b) sane. I think still now actually that that was the worst I’ve ever felt. I was bad after both my babies actually.

It’s interesting too what you say about periods. I have a migraine every month without fail. If I’m on I’m having a migraine - full stop. That side of things is much improved recently because I had the Mirena Coil fitted which makes your periods much less, so the periods are less and so are the migraines - still there but shorter and less severe. Before the coil they were pretty debilitating, and I was pretty much useless for a week out of every month - well more useless than usual lol.

I’m seeing my GP on Thursday, and am hoping for a referral to Dr S. I think that is the way forward. And in the meantime I will work on my diet. To be honest I’m not good with things like that - I’m not very well educated about what’s in what lol. I can do the caffeine bit although I’m not too sure what products contain caffeine or aspartame. And what will I drink without tea lol ugh can you imagine?!

Thank you soooooo much for your replies xx

you could try decaf tea?

I think one of the gals mentioned the Heal Your Headache book which has a food/diet guide in it to help you. See if you can get a copy on eBay or Amazon.

Or DizzyIz can give you a list of the 6 C’s to avoid and per Dr S’s advice with diet.

But think EAT FRESH all the time, no processed crap and decaf and plenty of water throughout the day.

Wishing you so well x

Thank you, Muppo.

If DizzyIz could tell me that I’d be very grateful :slight_smile:

I’ve been looking through the forum, and it seems I can’t eat anything lol. Bit of an exaggeration but I am sort of wondering what I CAN eat now!

I also read somewhere that if you don’t have food triggers for migraine headaches then you’re unlikely to have them for MAV. No food or drink triggers headaches for me, so does that mean that food triggers in my case are unlikely? Please say yes lol xx

Sadly a lot of us here suffer with SILENT MIGRAINE and I am one. I have v bad MAV and no headaches at all. But doing the diet will help you work out if your symptoms will lesson over a few months.

Caffeine (inc chocolate but white choc is ok), alcohol, smoking big no no, nuts, processed foods (like packaged crap from the supermarket), fermented stuff, low salt, avoid vinegar and foods with high histamine in them (spinach etc you can google foods that have this) and onions, aged cheeses and cured meats (salami, aged hams etc) and no citrus.

Think fresh and plenty of water (make sure you’re drinking your 2 litres a day), decaf - no fizzy drinks if you can avoid. I’ve found trying to do this has inspired me to cook different and try different things and making sure my 5 a day (fruit/vegs) are in there.

Let me know if I can help further but remember that you dont need a headache for a trigger to set off the rest of your symptoms.

Stay calm x

Here I am again!

I’m happy to list Dr S’s ‘Dietary and other measures to possibly aid in the prevention of migraine and migraine variant balance disorders’

Just to say his list is not as long as the Bucholz list, but interestingly includes some things that Buchholz doesn’t place high (like eggs).
Also, he doesn’t mention avoiding nuts, which are regarded by most other migraine diets as having high trigger potential, as do things like dried fruit.

Your point about food not being a trigger for normal migraine headache for you is interesting too, but impossible to answer. Personally I do not think food (with the exception of red wine and caffeine in large amounts) is a trigger or a main trigger for me. I think it’s my cycle, stress and maybe the weather. However, I’m following Dr S’s diet religiously at the moment, reading all food labels to avoid the dreaded MSG (hidden under other names). I’m also avoiding nuts and other processed foods like smoked and cured meats and anything fermented (like balsamic vinegar) even though these are not on Dr S’s list. He excludes dairy and eggs too, which as I am not a big meat eater (I was vegetarian for 20 years) and avoiding nuts, is hard.

I have however discovered that not having milk doesn’t mean having to have soya milk. Oatly and Rice Dream are quite palatable and work in (decaf) tea and coffee. I even made an impressively frothy cappuccino this evening with my cappuccino maker using decaff Illy coffee (the best) and Rice Dream!

Anyway, enough of me rambling. Here’s Dr S’s list:

Dietary Measures - avoid the 6 'c’s

  1. Cheese - now this is a con, as he then says ALL other dairy products, incl. yogurt, cream, buttermilk - and I asked him about butter and he said no (even though it changes chemically when made from milk but hey ho). Obviously cakes and (most) biscuits are out as they contain butter (although plain oat biscuits are ok)

So I’m using Oatly milk and Rice Dream for tea and coffee and on cereal (which is only shredded wheat or porridge - see why later), I’m using ‘Pure’ (the make) soya spread instead of butter because most other margarines including things like olivio have dodgy things in like hydrogenated this and that or lecithin which MAY mean MSG under pseudonyms

  1. Caffeine - i.e. tea, green tea, cola etc. and chocolate. I drink pure herbal teas (some of the fruit ones have citric acid in which is a no-no - see under C for citrus fruits) like peppermint, and expensive decaff coffee as it’s decaffeinated without chemical apparently

  2. Chocolate - see caffeine above. I thought white chocolate was ok (it is according to Bucholz) but it fails the Dr S criteria as it’s bloody DAIRY!

  3. Chinese food - this is another slight misnomer as here he actually means MSG or monosodium glutamate. Not all chinese food has this in! Leave the soy sauce out off your pak choi and you’re fine. But MSG doesn’t begin with C…
    Now MSG is in everything packaged (an exaggeration, but you need to check the labels). It is wise to avoid (if you’re going to stick with this diet): yeast extract (Marmite and it’s in most stock cubes and bought soups); anything with ‘extract’ in it, anything with ‘something protein’ in it e.g. vegetable protein; caseinated whey; lecithin, malted barley or barley malt (IN ALMOST EVERY BREAKFAST CEREAL OR PACKAGED BREAD, unbelievably. I’ve so far only discovered shredded wheat, porridge and ready brek don’t seem to have it in, and some posh mueslies, but then they have nuts and dried fruit which are ok according to Dr S but…; Cranks wholemeal bread doesn’t have malted barley in and probably the white one’s ok too); and anything with the word flavouring or natural flavouring MAY be MSG, so crisps are out!

  4. Citrus fruit and drinks - oranges, grapefruits, lemons, limes, tangerines, clementines, satsumas, mandarin oranges; also bananas and pineapples. An dI’ve found citric acid is in many cordials and jams, but I don’t know if that’s just me being obsessive. I have honey on my (non malted barley) toast

  5. Chianti - aka all red wines, and ‘certain other alcoholic beverages’ - say no more

and a bit later he says ‘eggs can be a factor in some people’, and advised me to avoid them.

and a bit laterer he says ‘freshly baked bread’ as it has higher levels of yeast. So go for the old stale loaf!

It sounds pretty difficult but actually I’m not finding it too bad. But it’s MUCH harder if you’re in a cafe or restaurant or at a friend’s house. “Excuse me but have these sausages got yeast extract in them?” “Have you got any sandwiches without butter in them? And is the bread malted barley-free?”

So I think you have to be relaxed and not too obsessive about it as stressing about it will trigger a MAV bout, to be sure, more than a tiny bit of barley malt.

Other Measures

regular sleep
regular meals
no undue exertion/exercise - by this he means no change in your current exercise regime. If you’re fit and run, carry on with the same. If you’re not, don’t start a tough regime now
avoid stress (had to pick myself up off the floor after reading that one)

So that’s Dr S’s list, with my comments.

It’s possible he’ll put you on a drug with weight gain as a side effect, so this diet is actually extremely good at keeping the weight down :lol:

I think I’m the only person who’s LOST weight on Lyrica and dothiepin!

Good luck if you decide to try it and I’m happy to answer any q’s about weird ingredients, or recommend Dr S-would-approve-it diet recipes :slight_smile:

Dizzy Izzy x

Just to confuse you even more, here’s a link to the University of Berkeley, California, Migraine trigger list. I’ve had this stuck on my fridge for a year. As you will see it does differ from Dr S’s list quite considerably, so I guess one has to use common sense and make one’s own mind up about whether to follow one or the other or even both combined (which is what I’m doing, but it’s extremely restrictive doing this). … iggers.pdf

Also, as it’s American, some of the things don’t mean the same or apply to UK food, e.g. ‘american cheese’ whatever that is, and it’s a bit contradictory in places. But I thought there was some good advice on here, especially in the non-diet section


Thank you so much for such detailed posts, DizzyIzzy and Muppo. I have read them and made notes :slight_smile:

By the way, I don’t know how much relevance this has and I’ve never understood it, but the only thing I’ve ever noticed that’s food related is McDonalds. When I have that I can almost guarantee that it will increase my visual stuff. That’s the only thing I’ve ever noticed though.

DizzyIzzy - how much better are you actually feeling? And do you think it’s more meds or diet or both equally? I guess that might be impossible to answer if you started doing everything at the same time. Thank you so much for your help - and Muppo :slight_smile: xx

Hi Sally,

Yes, I’ve also got several shared symptoms with you, and I have a diagnosis of MAV (though I also have BPPV).

Regarding the MAV diet, I would just like to point out that it’s still controversial in the scientific community, and although some people report good results from following it, it certainly doesn’t work for everyone, and although there’s no harm at all in having no processed food etc in your diet, some of the other foods (i.e. the banned fruits and veg) are actually very good for you and an important source of vitamins and anti-oxidants, so you shouldn’t be excluding these from your diet unless there is a good reason to. It’s worth trying, but if you don’t see any obvious benefits you shouldn’t stay on it long-term. You could also try a half-way house diet first and cut out the more obvious triggers of caffeine, chocolate, cheese and alcohol for a month and see if that helps. Then try the full MAV diet if you don’t get any improvement?

I think on here people are generally pretty pro-MAV diet, but I just thought I would put another point of view forward.

Personally I didn’t find diet to be much of a trigger - apart from alcohol, which I avoid totally. I’ve got my MAV under good control with medication instead.

Guys, I’ve just suddenly remembered that one of the things I tried years ago (when it went through a fashionable period and was all the rage for a while) was allergy testing. They put a thing on my finger and tested to see what I should and shouldn’t eat. I personally thought it was a load of tosh but anything’s worth a go when you’re as bonkers as me lol. Anyway the point is is that the guy said I tested positive for allergies to wheat and dairy, so for a few months I was very strict and I cut out wheat and dairy altogether. It did nothing - zero effect so I guess that means that wheat and dairy aren’t triggers for me?

Soooooo I’ve made an executive decision which is to cut out a few of the other main things - I’m going to cut out cheese, chocolate and all caffeine. I’m also going to make sure I’m drinking plenty of water. I will cut out citrus and onions and nuts too, because I don’t eat those much anywya so that will be easy.

It’s just the MSG part I’m not sure about. Maybe I’ll think about that later if giving up the other stuff has no effect.

Thanks for your post Beechleaf, and to be honest I think I’m like you - I personally don’t think that foods are a trigger for me, with the exception of the McDonalds thing which is weird - is there some particular thing that McDonalds is full of that might affect me?


Hi Sally and welcome to mvertigo,

I get shivers when I read posts like yours, all SO horribly familiar. Including the feeling like dying thing. That’s the phrase I use when trying to explain to people how bad I can feel - that it’s hard to isolate symptoms but that I really feel like I am dying, shutting down, that it is not possible to feel so awful and not be dying.

So anyway, YES, all your symptoms sound like migraine. Except the bladder thing, that is weird :lol: which may be completely unrelated.

I understand your fears about degenerative brain disease(s). I’ve had the whole MS diagnosis hanging over my head for a few years now but with two clear MRIs that looks, mercifully, to be off the table. As you’ve felt this way for twenty odd years it’s unlikely that you have anything like that. You’d probably have been diagnosed by now. That being said, you should consider have tests (scans etc) to eliminate those things.

The good news is you can do things on your own, with or without diagnosis to try and get better. As others have mentioned, all the diet and lifestyle stuff. You could also ask a GP to prescribe you any of the multiple meds which work really well for chronic migraine. There are dozens and dozens of them and everyone has different experiences. The Benzos however, seem to be almost universally effective (esp Valium), but many are reluctant to take it regularly. Personally I’ve had fantastic success with Prothiaden (aka Dothep) although I have gained a lot of weight on it. It is worth it though to have my life back.

Good luck and keep us posted,

You can take it that McD’s is full of sh*t in general. The only reason they put gherkin in the burger is coz there is so much sugar in the other stuff that technically it’s classed as a dessert!!

Avoid avoid avoid!!!

Fresh fruit, veg, good choices and drink your 2 litres of water a day!!

And if you feel your missing out on certain vits/minerals from the diet - add supplements.

I take:

Magnesium 500mg (2 x 100mg at breakfast 1 x 100mg lunch and 2 x 100mg dinner) - to help with migraine
B-50 Complex (1 a day at dinner)
CoQ10 120mg (1 a day at lunch)
Vit C 1000mg (1 a day at lunch)
Ginkgo Biloba 60mg twice a day (breakfast and dinner)
Ginger Root (1 a day at breakfast to help with digestion and nausea)



I’ve been on Dr S’s diet for a month now and also added extra exclusions such as nuts, dried fruits.

I really don’t think it’s the diet that’s helped much. In fact I got a lot worse recently (but that could be withdrawal from the offending food OR a side effect of the meds which I started 2 weeks ago).

I think it’s the meds plus rest and relaxation that are helping me. Once I feel stable (and I’m far from that now), I’m going to start eating normally again. But I will probably always avoid/be v. careful with caffeine, red wine and aspartame, and MSG when it’s in large amounts. I hardly ever eat junk food anyway, and love cooking, but I do miss my cured/smoked/fermented stuff like balsamic vinegar etc.

But I’m sticking with the diet till I see Dr S again. Then I’ll know at least I’ve tried it.

Most people on this board who have food triggers find it’s pretty obvious to them. I’m not one of them (except strong caffeine as I said before).

D-I xx

Thank you - you’ve all been so friendly and helpful - I really appreciate it.

I’ve been thinking for a while about upping my supplements too actually, so maybe now’s a good time.

Vic - I’m pleased you are doing so well. You sound much like me - the part about how you can feel so awful and not be dying - it’s the scariest most horrible thing ever. I remember trying Prothiaden years ago and it didn’t help me, but there are so many meds around aren’t there? Hopefully once I get a diagnosis I can leave it in the capable hands of Dr S - never thought I’d be saying that about a doctor lol.

Thanks again everyone - I will let you know how I get on xx