Mild, sustained, infrequent episodes of MAV

Good day everyone,

Rather than sharing my story on the stories post, I thought I’d create a new topic, as I am looking for a few answers and people with a similar case, as well as any confirmation about my diagnosis you might be able to give me.

I am a 26yo Australian male. I first started suffering from my ‘vertigo’ symptoms in 2006. My father and older brother have common migraine issues but I’d never really had any problems. After a bit of mucking around with diagnoses, I was referred to the Melbourne Alfred Hopsital Neurology clinic and was diagnosed as having vertiginous migraine. I have been back numerous times, and the various doctors I have been to see have all felt reasonably comfortable with the diagnosis. I’ve had an MRI scan to eliminate anything particularly nasty going on.

My symptoms are thus:

  • often for a day or two before the obvious symptoms I will feel unnaturally moody / depressed.
  • tightness in the sides and back of my head, almost liked a blocked ears feeling at times
  • mild nausea felt in my jaw - like one might feel when they are about to throw up, but without any stomach nausea at all. I have never vomited as a result of this nor come particularly close.
  • when I move my jaw around the tightness and nausea get worse
  • mild dizziness
  • loss of concentration
  • mild headaches
  • fatigue

Typically this will last for about 3 weeks. I have probably 2 - 4 such episodes per year.

To me what makes my case seemingly abnormal is the mild symptoms I have (no severe vertigo) and the long length of the episodes at a low frequency. Migraines cannot last for more than a few days so if the diagnosis is correct then I must be getting strings of migraines but only occasionally.

I have been on daily doses of 1mg of pizotifen for a few years now. It’s hard to know if it’s working because it appears to me that i have rather atypical symptoms. During episodes I have sometimes increased the daily amount to 4.5mg as pizotifen can apparently work to stop migraines in higher doses but it appears to be unsuccessful in my case and just makes me really drowsy - I was sleeping for about 14 hours a day recently, with no chance of working.

I really sympothize with all of the MAV sufferers here, the majority of which seem to have far worse conditions than I do. For me it’s not just the illness but the assoicated mental and social issues that it causes. I was diagnosed with moderate depression earlier this year. I think it’s more borderline for me, but certainly during periods of illness with the confusion over diagnosis and the confusion caused by the symptoms themselves, and stress regarding my work situation, things aren’t great for me mentally.

I don’t really blame people, but my most hated questions is “how are your headaches?” whenever i return to work. In future I’m going to say i suffer from migranious vertigo as migraine is such a misunderstood term.

I was wondering whether anyone is in a similar situation, namely any of the following:

a) rather mild vertigo symptoms with a vertiginous migraine diagnosis
b) approx. 3 week episodes
c) episodes 2-4 times a year

Hi Danraven,

The short answer is “yes”.

I have had “classic” migraines since my teens (now 38) but only got the definitive diagnosis of MAV this year. Looking back I can say that I have had MAV off and on for about 10 years.

The frequency and severity of my MAV episodes has varied from a few weeks to a few months and from annoying and uncomfortable to being house bound and amazed that I could still be alive I was feeling so bad.

I think the key message here is that migraines can and do change over a migraineur’s lifetime.

As for the duration in general, the accepted “wisdom” (which, frankly, I now question) is that migraines have a start and finish point, so how can people with MAV have it continuously for weeks or months? My neurologist (at RPA in Sydney) said I was in a “cycle of migraines”, which I took to mean back to back migraines. I think there is still a lot that is unknown about migraine in general and MAV specifically.

As for the depression - many of us on this board suffer some levels of anxiety and/or depression. From my own experience some of that is definitely the migraine at work rather than a seperate issue of depression. I conceptualise that as the migraine firing off in the “depression” or “anxiety” part of the brain. I call that physiological anxiety or depression as opposed to psychological. Having said that, when MAV lingers for weeks, months or years it is easy to get depressed “psychologically” at having such a sh*tful life.

It sounds like you have a lot of symptoms relating to your jaw. Do you have TMJ as well?

I understand completely about the “headache” question. I don’t get headaches with this - sometimes eye/face pain and sometimes a “hungover” feeling but these are definitely not my worst symptoms. My own family still think I have “bad headaches” even though I’ve had non-headache migraine for over 20 years. Sigh.

Hope that the above is some help.

Regards
Victoria

Hi Victoria,

Thanks for your response. Good to hear from someone who has experienced something even remotely similar, although no offence when I say I hope things don’t become quite so bad for me. I hope you’ve learnt to deal with things better than I have. I don’t have TMJ - just seems that the sides of my jaw, stretching up to my ears and around the back of my head, are where I feel the tightness and nausea most.

My migraines changing has been one of my causes of concern. I’m just getting by with work and sick leave / annual leave as it is, but the episode I’m currently experiencing has gone on for longer than usual (nearly 4 weeks, only been able to work about half the time) and the symptoms seem a bit more aggressive. I seem to have had one major change in the type of migraine I experience, what’s to say it won’t get worse?

In terms of not enough being known about MAV - I can only agree with you based on my own experience. Friends/family believes these things can just be fixed if you keep trying and investigating. In other words, I must not be doing enough and it’s partly my fault that I keep getting episodes. But the ‘fact’ is, none of the neurologists or GPs I have seen can totally describe what’s happening with me, and they haven’t suggested anything different to what I’m doing. I’m going to see another specialist soon to appease everyone, but I don’t expect anything to change. I will investigate things like sleep patterns more fully rather than relying on medication, but it will be hard to sustain any changes and analyze them given the infrequent nature of my episodes. I think I’ll need some income insurance as well - is that what everyone else generally does?

It doesn’t really affect me, but in addition to the illness-based depression, as you say, now and then I get these extraordinary bouts of anger during epsiodes. I’m able to conceptualise this because it is so distinctive and there’s nothing i can identify as really being so angry about. I just tell people to stay away from me!

Alex.

Hi Alex,

I’m not sure how well I cope with this stuff but I have to say, getting a diagnosis was a relief (finally!) and medication (Prothiaden) has helped a lot. Also, now that I know what I have, bursts of weird stuff don’t freak me out anymore (which is not to say they aren’t unpleasant, just that I don’t freak out).

I do understand the stress that not knowing what will happen with migraines can bring. I have a mortgage - if I can’t work, I can’t pay it. Sick and annual leave are finite. Income protection insurance is expensive (in my case I can’t get it as I’m a police officer so the stats say the risk is too high - even if I quit! Apparently we carry the policing burden into subsequent careers. Also, I had depression 15 years ago and the stats say I’ll get it again. Can’t fight the actuaries!). On the upside - your migraines may change for the better or stop entirely! Try not to worry about what may or may not be, stress is the migraineur’s enemy.

Do not get me started on “well meaning” friends and family members who, without the benefit of any medical training, let alone experience of migraine, make their own diagnoses and prescribe “cures” such as meditation, kineasiology (can’t even spell it), an “amazing” homeopath who “cured” them of something completely different and unrelated to migraine etc etc. Seriously, if it were that easy surely our dunderheaded, inexperienced neurologists would have hit on this already :roll:

I agree it is difficult to know just how well medication is working as opposed to any other lifestyle factors or the migraine espisodes just coming to their own end. As you have some depression going on perhaps it is time to consider trying an anti depressant. These are pretty commonly used for MAV.

Hang in there and keep us posted.

Vic