Migraine and vestibulopathy - a bit confused

Specific Illnesses & Conditions VM/MAV
1

Hi everyone,

Hope i’m posting in the right place - apologies if not :slight_smile:

I’ve recently been diagnosed with right-sided vestibulopathy: following a couple of months of low level dizziness after a flu-like bug and horrible earache, i visited a neuro-otologist who felt i had had VN, based on my vestibular test results (balance and hearing totally normal but left-beating nystagmus in every head position in the ENG). He prescribed VRT which i’ve been doing religiously for 3 months but i’m not convinced it’s helping me, or perhaps i’m just impatient :slight_smile:

What is confusing me is this. During the course of my dizzy experience i have had a few periods of being better - not just a bit better, but completely normal - the first time it was for a few days, then nearly 2 weeks and the last time was almost a month, but it always seems to come back, gradually but persistently. I’ve now been feeling low level dizzy for about 6 weeks. It doesn’t stop me doing anything, it’s just uncomfortable and annoying, and a pretty depressing too :frowning:

On another forum it’s been suggested to me that i may have MAV. I have never had headaches or any noticeable migraine symptoms, either prior to or during this (except possibly the dizziness!) and have no family history. I do notice my symptoms seem to get worse around my period though - i seem more likely to “decompensate” as my VRT physio calls it, at around this time - i think… Also, i experienced a gradual onset not an acute spinning episode.

My question is, i understand that the vestibular injury i have suffered is what is causing my ongoing symptoms, and that this can be caused by VN or MAV. But, if i were to have MAV or an MAV element which led to the injury, is it possible for the injury to get worse with each new “invisible” migraine if left untreated? How on earth would i know if it was MAV if there is no golden standard for diagnosis? I haven’t yet brought up the question with my specialist, partly because i don’t want to question his expert opinion (he felt i had a “classic case” of VN) and i’m also wary of taking medications if not absolutely necessary, but i’m also keen to get my life back to normal and to do the right things to help myself.

I feel so gloomy - i’ve paid such a lot of money to see this neuro-otologist and i’m told he is excellent in his field, but i had hoped that since my dizziness was only relatively mild the VRT would have cleared it up sooner. As i’ve looked into it, it seems that almost any dizziness COULD be MAV as everything seems to be a symptom of it. So now i’m unsure of my diagnosis and worries if i’m on the right path.

Any ideas gratefully received!

Best wishes,
Lushka

2

Welcome Lushka: Sorry to hear of your dizziness. I sympathize. Over the years, I have been diagnosed with Labrynthitis, Meniere’s, Vestibular neuronitis, etc. I had 6 months of VRT. All before I was diagnosed with MAV. During those times, I would feel better some days, worse somedays and completely normal for months at a time. The VRT made me feel better for about 1 month or so but then started making me feel worse. That is what ultimately sent me to Mass Eye and Ear where I got my MAV diagnosis. I have had all the ENG testing, including blood work, MRI, etc. Everything was normal. At the same time my primary care ordered blood work to test for menopause as I was 49 at the time. My blood work showed I was menopausal, but I had the same blood test 3 times within 6 months and it showed extreme fluctuations in my hormone levels. Fluctuating hormones is a huge trigger for migraine and putting all my symptoms and the results of these blood tests together overwhelmingly pointed to MAV. I don’t know how old you are but especially if you notice these symptoms intensify monthly I would say there is a great corrolation for MAV. Being a breast cancer survivor myself I could not take any hormone replacement therapy (although I was so desparate I did try it for a couple of months before my oncologist strongly suggested I stop). I am not sure if you can take any kind of hormone therapy such as birth control … that may help. Otherwise I just follow the migraine diet, do aerobic exercise, yoga, relaxation and my dizziness is usually tolerable. I know reading through this website will help and give you some great information. Good luck and keep moving!
Joan

3

Welcome. I am sorry that you are dealing with this as well. When I first got ill June 07, I had several weeks in July and then several weeks in August of feeling perfect. Then, unfortunately, it came back august 07 to stay. This really seems to be a disorder made by ruling out other dxs, history, etc.

4

I forgot to mention that I have seen MANY people misdiagnosed with VN. I know it is not in our nature to question our doctors, but with this disorder we seem to have to sometimes. Even some top neurologists are not familiar with MAV. People with MAV have different types of onsets from what I have learned. This disorder has definitely gotten progressively worse for me with time and incorrect treatment.

5

Hello,

It’s quite early days for you so it’s difficult to say for sure. I was initally diagnosed with VN - I did a number of months of VRT, sometimes I thought it was making me feel better but ultimately it didn’t cure the issue and as time went on it became obvious it was MAV. I developed sensitivity to light a fair way in to the condition which is a bit of a give away. I did show some damage to my vestibular nerve on testing. Not everyone with MAV has a negative ENG/rotary chair test. It is entirely possible I did have VN which then triggered an underlying migraine condition and this morphed in to MAV. This happens.

I’m no doctor but my hunch is that if you have had periods completely free from this only to have it to return, then go again, that sounds more like a migraine pattern. I would anticipate more of a slow trajectory towards health with VN, with the odd bigger decompensation episode thrown in. MAV can be constant, but it is much more likely to be episodic than VN. Another thing is that VRT is much more likely to make a migraineur feel worse. Your neuro otologist will be looking at the fact a virus started this, hence the VN diagnosis, they could be right, but you could also be like me and be dealing with both.

I don’t think you should worry about the idea of further damage during migraine episodes if this is a MAV. To my knowledge that is unlikely. Although the episodes are miserable they aren’t pulling you further and further in to illness which you can’t come back from. We have had many people on here who have been sick as anything for months, only to find the right drug and they can lead a normal life again. In that respect I don’t think it is any different from people who have regular migraines that cause pain not dizziness.

You definitely can’t rule out MAV on the grounds that you haven’t experienced migraine before. That happens. As for family history, again, I’m no geneticist, but I guess it’s impossible to know family history of migraine exactly because it could have been a great, great grandparent who had it.

Hang in there, I guess you could keep doing VRT for a bit and see how it goes, it can take time if it’s VN. If you feel it’s getting you nowhere talk to your doctor again about trying a MAV drug. If that doctor isn’t open to listening to you then it’s time to seek a second opinion. There are many good doctors in this field, someone on this board will be able to recommend someone else near you I’m sure. However if the neuro came heavily recommended it’s entirely possible he has gone for the most obvious (based on the virus you had) diagnosis first but will be totally open to exploring other avenues if the condition doesn’t improve or clear up.

H

6

Hi Lushka,

Welcome to the forum. I can’t add much more after Hannah and Lisa’s great replies. Unfortunately MAV can end up being a dx of exclusion. Hannah and I have been through a similar trajectory: both had a severe bout of VN which allowed an already underlying migraine condition to take hold and become MAV. I was in denial about this for about 1.5 years because for me it wasn’t clear cut and I was certain that every time I had a another “attack” that I was decompensating from the damage inflicted by VN. I simply couldn’t accept that I was a migraineur because I never had what I thought were migraine headaches. But over time it became clear what was going on.

You might want to read through the FAQs if you haven’t already answered by some great neurologists to see if you can identify with any of what they say. There was an interesting editorial that was published this month (http://mvertigo.cloudapp.net/t/migraine-related-vertigo-a-common-and-important-disorder/1226) –- I found it very interesting how it was pointed out that many patients are reluctant to accept they have a migraine disorder. I’m just wondering if this applies to many doctors as well who are not well-familiarised with migraine as a “global neurological disturbance”.

Best … Scott 8)

7

Thank you Hannah and Scott - really appreciate your advice.

May i ask whether you have been able to control your migraine-vertigo with meds? I looked up the UK Migraine charity and it seems they don’t even acknowledge MAV or vertigo as a symptom… Is this a very new or very rare complaint then? Everything i have read about migraine also mentions the idea of episodic symptoms - maybe for a few hours or up to 3 days as a maximum. Do you feel then that the constant (or at least lasting weeks on end) vertigo is caused by back to back migraines or some interaction with the already injured vestibular system. This is all so complex it makes my head hurt! :roll:

I think i will give my specialist a call next week and ask for his opinion. I know that he deals with MAV in other people so perhaps he will be able to shed some light on my case.

Best wishes,
Lucy

8

Hi Lucy,

I think it’s fair to say that the diagnosis of MAV is normally done by people with a major speciality in the field of dizziness. Even some neurologists are a bit hopeless and don’t seem to get it. And some of those who have a bit of understanding, don’t understand that it can be constant, not episodic. The episodic thing is a bit of a myth as a number of the more extreme cases, like myself, can experience constant symptoms for weeks on end. Fortunately it is becoming slightly better recognised although not much. When I first got ill a number of years ago now my GP didn’t have a clue and the two ENT’s I initially saw didn’t either. It took a neurotologist to diagnose it - although my initial diagnosis was VN, as I said. Once it was identified as migraine, fortunately I was then referred on to a neurologist in the same hospital by neurotology who was fantastically knowledgeable about it.

In terms of what’s going on, I don’t think anyone is 100% sure where migraine and dizziness is concerned, although the specialists tend to agree it is a disturbance of sensory inputs and one of the areas that can be affected is your vestibular system. It was suggested to me and I read elsewhere that the dizziness is like a continuous aura state which presumably doesn’t tip over in to headache. Alternatively in MAV sufferers the dizziness IS the migraine. My dizzy symptoms are triggered by all the usual migraine triggers, so one way or another it follows a migraine pattern, but unlike other people, once triggered my symptoms can be with me for weeks or even months.

I will never know whether I had Vn and then MAV or MAV all along. Either way I don’t think it has a bearing on whether the symptoms are continuos or not. Some people who are pretty certain they just have MAV don’t experience it episodically.

I have had some success treating this with a beta blocker, propranolol. I am able to work full time and although I live with the possibility of symptoms all the time and regular flare ups - I am able to lead a relatively normal life much of the time and spend large periods of time dizzy free. Other people I know on and off the boards have experienced complete relief with the right drug.

Don’t despair, this has just hit for you so it’s all very shocking and new. Try not to panic and get frustrated about it; unfortunately this just encourages the symptoms. Whether it’s migraine or VN they both don’t respond well to stress.

If I had to sum up your situation as I see it, you may have VN or it may be MAV. There are very few other conditions that cause these symptoms. The vast majority of cases are attributable to either one of those conditions. So you aren’t far off the right diagnosis, if it turns out not to be VN it’s probably MAV. And just to reassure you further, this isn’t conjecture. I’ve had this a long time and did more research and searching for answers when I first got ill than I care to remember. I know it feels frustrating and annoying when you want to be certain of a diagnosis, but honestly, finding this forum and being aware of the condition already puts you streets ahead of many sufferers who don’t even know MAV exists. It’s ironic that dizziness is so little understood by doctors and they are so stumped by it, as if you know what to look for the diagnosis is often simple.

You mentioned looking at the UK migraine association. I am in the UK, if that’s where you are, would you mind telling me which neurotologist you saw? My guess is he has started with the most obvious diagnosis and as he is aware of MAV will probably happily try you on a drug if the VRT doesn’t work out.

H