Difficulty believing diagnosis?

Please can anyone help? I have been recently diagnosed with MAV but am going out of my mind with worry that I’m not ‘typical’ and therefore that I’ve been misdiagnosed and something far more serious is going on. It’s a longish story but I wanted to not forget any details:

On November 26th I experienced a strange ‘dizzy’ spell unlike anything I’d experienced before. I’d previously been in good health other than gallstones (soon to be removed) and an ovarian cyst which has since resolved itself.

Standing at the sink I suddenly realised the world looked ‘funny’ – not moving/spinning/whirling as in vertigo but as if I was slightly dizzy – and I felt faint. It came on suddenly like a normal fainting feeling but didn’t seem to progress to a full faint so I decided I needed to sit down. Over the next hour or so the symptoms continued – sitting down didn’t seem to alleviate it like a normal faint. I also felt v sleepy and with a strange sense of pressure behind my nose. Later on I had some diarrhea (sorry! but want to be honest). After a couple of hours I felt better. The only other abnormality in the days leading up to this was what I thought was a sinus headache a few days previously: strange for me as I either get migraines (not so much in recent years but chronically as a teenager and recurring sporadically since then) or nothing and this wasn’t my usual migraine with aura/vomiting.

The next day, I had a similar feeling. This time, safe in the knowledge I wouldn’t faint, I carried on as normal and it went away.

Over the next two days I felt more tired than normal but not faint or dizzy. On returning to work on the Monday I had a similar dizzy feeling in the morning but felt a bit better after eating breakfast/sitting down. Over the course of the week I felt extremely tired, as if I was coming down with something, but didn’t. I had a vague sore throat but it never amounted to anything. By the weekend I felt nauseous, weak, still tired and had developed a general sense of disequilibrium – like the world was off kilter. I said ‘I’m so tired I can’t even see straight’ but I wasn’t actually experiencing any vision problems. I could still focus etc. It was just like the world didn’t look right. Off my food, I was very thirsty. I noticed that if I sat down/still the symptoms felt better.

The same feeling continued for the next week. I would feel particularly awful on leaving the house in the morning – hot, clammy, weak legged, nauseous - and one day fainted on the way to work. Being in busy situations like restaurants or busy streets seemed to make it ten times worse – as if I couldn’t take in everything that was going on. I took a day off to rest and felt a bit better the next day, only to have another strange dizzy/lightheaded/nauseous/tired episode the day after that.

I took the next week off to try to recover but the symptoms kept coming and going. Nausea was the worst symptom, but it didn’t seem related to eating, more to moving around. My legs ached like I had the flu but felt better when I moved around/walked. The pressure sensation I’d felt on that first day was now coming and going in very intense spells, between my ears and sometimes down under my ears, as if I was swimming underwater or flying in a plane. The GP put it all down to labyrinthitis and said it would go away so I tried to continue as normal, again noting that movement made the nausea worse. Stemitil didn’t help.

Some days I would feel OK, others not. When I felt nauseous I would feel weak and want to sit down/not move. At one stage it got worse again, seeming to coincide with a sore throat, but again this went away without amounting to anything. Sometimes I would get a headache, not my usual migraine again, but very painful and one sided, sometimes travelling far back in my head and around my ear to the base of my head. The nausea was worst in the mornings – sometimes I’d wake in the middle of the night with it.

A few weeks later the nausea was easing and I had no more bad headaches – the occasional twinge - but had severe loss of appetite and was beginning to feel extremely anxious about what was causing my symptoms. Occasionally I’d get the weird dizzy spell again – usually standing up though once sitting down. This time the GP referred me to a nuero-otologist. I was by now very very anxious too – mostly fearing MS as I’d read that this could be a cause non-vertigo dizziness and having been referred to a neurologist 6 years ago with weird fleeting peripheral neuropathy symptoms (but having had a normal neurological examination and MRI scan of my brain) I became very very anxious that the two episodes were connected. Two doctors and the neuro otologist said they weren’t.

The neuro otologist took my history and did a variety of tests, including VNG which showed no problem with my brain, and very confidently diagnosed me with migraine related dizziness/balance dysfunction and prescribed me one month of propranolol and physiotherapy. I begged for a neuro consult and mri to confirm diagnosis and she agreed to the mri (my gp agreed to the neuro consult which I’m still yet to have - something which terrifies me.). The MRI was normal apart from a mildly enlarged pituitary gland, which I’ve since remembered was found on the original MRI six years ago but discounted as a mere symptom of stress and anxiety.

Now my symptoms are this: the occasional twinge of a headache but no proper headache, nausea first thing in the morning, an appetite that comes and goes, sometimes my legs ache terribly still as if I have a virus/flu – particularly sitting at my desk or lying in bed - and the worst of all: the feeling I’m going to faint when I get up in the morning/on the way to work, with a dry mouth and nausea. This is made a little better if I force myself to eat something as soon as I get up in the morning but this hasn’t stopped it altogether. I usually feel faint as I near the station but by the time I stand still on the platform/sit on the train, I can avert actually fainting. Sometimes this is followed by a more severe sense of disequilibrium/terrible pressure in my head, other times not. The general sense of disequilibrium seems to fading but can sometimes come back out of nowhere particularly if I move around a lot e.g. cooking dinner. Sometimes I feel very weak and shaky legged too. I never feel well. Not tired/sleepy but weak and achy and off colour.

The propranalol has also resulted in insomnia so I never sleep for more than three hours a night which I’m sure isn’t helping. I’m concerned I seem to have two types of dizziness going on – dizziness and then near fainting - and so it can’t be MAV. And that the diarrhea, achy legs etc all don’t seem to fit either.

Please please can anyone shed any light. I’m desperate.

It’s so hard to say, standing on this side of the screen. But I’m thinking that if you have doubts concerning this neuro-otologist’s findings, you might consider a second opinion. Not all neuro-otologists are created equal. :slight_smile: I’d have trouble following the advice of a doctor I wasn’t confident about, though. Meanwhile, i’m sorry you feel like poop and hope you get to feeling better.

My neurotologist handed me a booklet that said most people have a hard time believing the diagnosis (his literature used the term migraine associated “dizziness” instead of “vertigo” - and frankly, I like his term better because I find the acronym more amusing - “M.A.D.”).

But near-fainting can be part of this migraine trip - just as your “sinus” headaches may very well be migraines - and so can neuropathies and bowel problems and a whole host of other things that may not have been part of your migraine repertoire before. I think even the fainting itself may be a migraine-related event (though not common); I’m not as sure about that, but I do know about the near-fainting, having been in that pickle myself.

I even had an aura one time that I have never had again (fortunately) - I was colorblind for about 10 minutes during fertility treatment about 15 years ago. At the time, I didn’t know it was a migraine aura (it wasn’t connected with a bad headache) - but I’d been injected with medication to stimulate my ovaries into overdrive, and that particular cycle “didn’t take.” But when the “crash” happened a few days after the drugs were stopped, I could only see in black & white for awhile and was I scared! I didn’t go to the emergency room, but did call my eye doctor and had a bunch of tests that all came out normal - by the time I saw him, I could see in color again anyway.

I figured this out in retrospect (that it was an aura) after I got the M.A.D. diagnosis and learned that the tunnel vision that was going on when I thought I was going to pass out was actually an aura that was happening during a severe dizzy spell. At the time, I was in another hormone crash, this time from perimenopause. [Lots of people assume you only get low estrogen. Not so! I spiked - I know this because I felt like I had suddenly grown up 2 bra sizes, and I canceled a mammogram appointment (which I’d NEVER done before) because I was in pain like I’ve never felt before, and then my estrogen level must have crashed because the pain went away - and then came my first tunnel vision/dizzy spell incident.]

So I guess I’m saying that migraine “morphs” over time, changes and does different things to you at different phases in your life, so most if not all of what’s happening to you may indeed be explained by migraine. I used to think I had sinus headaches too, and my neurologist informed me that many people mistakenly think they have “sinus” headaches but in fact most self-diagnosed sinus headaches are migraines. I wouldn’t be afraid of the neuro consult - mine was very reassuring to me, and I think another medical opinion - especially someone who deals with migraine, as neurologists do - would be a very good step for you to take at this point. Hope this helps a little!


I totally understand your confusion and fear. Getting a diagnosis of MAV can take a long time and involves excluding a whole lot of other things. Because migraines have soooo many variants this can be tricky.

I’ve had migraines (aura with scintillating scotoma) since I was about 14. They were always EXACTLY the same. So, 15 years later when other weird stuff started happening, and lasting for weeks at a time I couldn’t believe it was migraine. 10 years ago I had a bunch of doctors telling me I had migraine (after they’d excluded MS) and I just did not believe them, as all the symptoms were nothing like my “usual” migraines.

So, it’s taken me 10 years of misdiagnoses (other than that first “correct” one of 10 years ago, which I didn’t believe) and a battery of tests to have it confirmed that what I had (now happily controlled by meds, touch wood) is MAV. My neurologist explained that migraines can and do change over time, and you can be in a “cycle”, so it’s ongoing.

I hope you get a definitive diagnosis and effective treatment, hang in there,


Hi Soworried,

Welcome to the forum. I finally had a good read through your story and to me there’s nothing unusual about it; in other words it easily fits MAV. As Victoria pointed out this thing can suddenly change over time and can continue to morph. The sinus pain, never feeling well, flu-like symptoms, aches and pains is all part of the symptom spectrum. I get the aches and pains all the time and, while in a cycle, never feel well. I’m in one now as a matter of fact and all day have felt like I have the flu and could barely walk up some escalators on the way home tonight.

If the propranolol is keeping you up and not having much effect, perhaps you should try something else? Have you tried valium to help take the edge off the bad days? It’s universally effective for almost everyone here (benzos that is) but is recommended by GPs here in Australia to be used only occasionally and not daily if you can help it.

Cheers … Scott

Thank you for your replies. It means a lot to know I’m not alone and that what feel like random symptoms can all be related. My neuro otologist is adamant that all my symptoms are related as we migrainers have what she calls ‘such sensitive brains’ that she says can cause reactions in lots of parts of our bodies, but it just all seems to have come out of nowhere and is so disturbing when I was previously fine.

One thing I’m wondering is have any of you ever had migraine issues with low blood sugar? When I was a teenager my migraines could be triggered by me missing breakfast - almost like clockwork - and at university I went through a stage of waking up with them. Maybe this is another manifestation of that?

As strange as it seems, this can strike us out of know where. Before this illness, I was perfectly healthy (except for headaches), and was NEVER EVER dizzy. and, then out of the blue one day I woke up with all these awful symptoms. I also feel very flu-like on top of the horrific dizziness. I believe that skipping meals can bring on head pain for me.

Thank you Lisa. Hearing from you means a lot because since the beginning so many of my symptoms seem to overlap with yours… and I know you’ve had difficulty believing it all. I know you suffer from terrible nausea. I did until it just abrupty stopped one day. Has yours ever stopped?

I’m not sure if you’re confusing with me someone else, as I haven’t really mentioned nausea. I have, though, suffered from nausea on and off from the beginning. however, for me this symptom (although bad at times) hasn’t been a major issue compared to my very disabling dizziness. I guess everything is relative and in my case the dizziness is so disabling that the other symptoms become less important if that makes sense. I wish you all the best in figuring this out and finding a helpful medication. please keep us posted.

Sorry - I must have got you confused with someone else. I’ve been doing a lot of reading about this lately.

Of course will keep posting.

Again, thanks.


See my post under “Do any of you doubt your condition”. I am very much like you. Most of what you say, I can identify with.

Oh and I also tried the propanalol and anything above 40mg gave me bad insomnia plus loose bowels. Low blood sugar could well be contributing to your problems. I have to keep a close eye on what I eat, especially in the morning.