The Vestibular Migraine Community

Anyone diagnosed with MAV at 40 yrs or over with no history of migraine?


#1

HI there, I have recently been diagnosed with a MAV type of migraine (though I have dizziness rather than vertigo). I am 41 years of age and have no history of migraine. Is there anyone else out there like me who has developed migraines later in life? There is a history of it in my family, both my sisters have episodic migraine and my aunty too, but my symptoms started almost 5 months ago and are constant and with me everyday in one way or another. I have always thought that migraine just came in episodes, so I have found it hard to believe the 3 Neurologists who have all diagnosed me with migraine. My biggest issue is my eyes and not being able to focus, blurry vision, mild dry eye (though that may be a side effect of the Nortriptyline that I am on) and phototobia. I also get eye socket/muscle pain in my left eye which is a bit more sporadic but lately has been there as soon as I wake up and gets worse during the day. I work at a computer all day I know that this does not help, but I am a single mum and have to work fulltime to support my two children. This has been so debilitating and I am really struggling. Anyone else have the eye symptoms with MAV? I think it is the vision that is causing my constant dizziness too, especially when I am walking or upright, I am ok when I lie down. I see that most people with MAV have ear problems more than eyes, but mine are definitely from my eyes. I have been to an Ophthalmologist who says my eyes are fine and a Neuro-Opthalmologist who says one eye strays but only mildly. I am trying Nort and have been on it for 5 weeks, but so far it has only helped with nausea. My Neuro wants to try Propranolol next. I have had head MRI, MRA, CT and full spine MRI to rule out MS. Nothing shows up in these or any blood work so they have narrowed it down to migraine. I am so anxious about my symptoms and I know this doesn’t help :frowning: Any advice or people out there with similar symptoms to me, I’d love to hear from you.


#2

Sorry this monster’s hit you.

I share the same scepticism. I’m in my late 40’s and had had only one migraine in my entire life.

Here’s my opinion piece on the matter:

Suggest you get an alternate opinion from an ENT or two; neurologists are going to be predisposed to giving you a neurological explanation.


#3

Hi JennyWren. I never had a migraine in my life until 2 years ago when I ‘came down’ with MAV - age 45. Like you my main problem was my eyes… problems focusing, headaches related to the eye strain - a lot of problems with glare from PC screens and mobile phones. etc. However, after being put on propranolol and pregabalin my eye problem has subsided. I can now use the computer/phone with no problems at all for hours at a time and only have a problem now and again with bright sunlight. I am sure the drugs will sort you out - it may take a bit of trial and error, but propranolol does it for me. I agree with the blurry vision possibly being caused by the drugs - that has happened with me. I would recommend getting a free download of f.lux for your pc - this adjusts brightness and cuts out glare from your monitor. I am getting reactolite lenses for my glasses to help me in bright sunlight. best wishes. Mark


#4

It’s worth bearing in mind that ear trouble affects vision as there is a hard wired link between the inner ear and eye muscles. When the signals from the ear start to go funny, you get undesired movement of the eyes (nystagmus, oscilloscopia)

Ive often wondered if propanalol works by reducing blood pressure which helps relieve pressure on swollen ears.


#5

Thanks for the info and for outlining your experiences. It is useful to hear from others as we all seem to be on this medical rollercoaster ride. I have had a few ear symptoms, especially when I flew on a plane a few weeks ago, I had ear pain and blocked ears. I agree that I need ENT advice, however I am in a regional area in Australia and some of the specialists are of rather average quality. I did go to one ENT locally and he just said that I am suffering from anxiety. I was disgusted that this man would be so condescending by saying such a thing. My lifestyle has been so detrimentally affected by this and whilst I am anxious, it is mostly due to my symptoms. Then to rub salt into the wound he charged me $200 for the consultation. So yes, I have booked in to see another ENT for an alternate opinion. I have been doing some more reading and can see that there is a link between the eyes and ears. I just want to get a diagnosis so that I can treat whatever this is and head onto the road to recovery. Unfortunately, I see so many others on similar forums who suffer these debilitating symptoms without knowing why and how to treat it. But I have to remain hopeful for my sake and my children’s too.


#6

Thank you for responding to my very long-winded message Mark! I am so grateful that you would take the time to talk about what has worked for you. The last Neurologist that I saw, who has a special interest in migraine and headache disorders, has prescribed propranolol should the Nortriptyline not be effective. I have been on Nort for about 5 weeks now and it has not helped as yet, I know that you should give it time to work, so I will give it a few more weeks and taper it down if there are still no changes after 2 months and try the propranolol. At the moment, I am willing to try anything in the hope that it will relieve my many head and eye symptoms.


#7

Yes you are right to be cautious of ENT’s. It’s a bit of a black art ear medicine and yes, they charge a fortune! Inner ears are so deep in the skull it’s very hard to diagnose issues. Our best bet is waiting for improvements in scanning technology. Both MRI and CT imaging are making great strides so here’s hoping! However it must be said visualising inner ear pressure is very hard. That’s why the ENT’s go so much on verbally reported symptoms but it’s not very scientific! Apparently it only takes a volume increase (swelling) of the endolymph the size of a grain of sand to cause an impact on the inner ear.

Funny you should mention the ‘anxiety’ diagnosis … I came across a woman at a party (yes I’m well enough to socialise, thank goodness!) at the weekend who said she’d had some light-headedness and some strange spells having difficulty walking. She was told she had anxiety and was given Amitriptyline, which solved the problem. I told her that I didn’t think she had just anxiety but it sounded like a vestibular issue which was CAUSING her anxiety. I told her to go see a vestibular specialist just to be sure because taking Amitriptyline unnecessarily, chronically is not great if you don’t need to.

My symptoms have really improved over the last 6 months … It was pretty horrible for about 1.5 years then things started to change for the better. The meds make a big difference, but I don’t believe they are addressing the root cause, you have to wait for your body to do that.


#8

I was diagnosed at age 42. No history of classical migraine symptoms (severe headaches), but with the benefit of hindsight there were other signs (non-severe headaches, occasional scintillating scotoma in eyes, unexplained seizures when I was a teenager).

Since diagnosis, I have found out that several relatives suffer from migraine so I do believe the diagnosis of migraine-associated vertigo is correct in my case. Nortriptyline has really helped alleviate (but not eliminate) my symptoms.


#9

I have also been recently diagnosed with MAV (or Migraine Variant Balance Disorder as Dr S calls it).

I busted my knee skiing in December, had surgery on in in February, after which I started getting mild dizzy spells, which then resolved as i recovered. Then (bad luck, I know) I got a serious stomach infection which was misdiagnosed for 6 weeks. The dizzy spells came back, and when I took Metronizadole (strong antibiotic), it resolved the stomach problem but started the dizziness off big time. I ended up in hospital, got discharged as they had no idea what was wrong with me, and have been dizzy and mildly photophobic ever since. MAV was suggested to me at the beginning, neither I nor the neuro-otologist thought this was the cause until at about month 3, headaches started hitting me with concurrent severe photophobia. then it became more clear it was probably MAV, and not a viral or bacterial infection, etc etc. I have also been diagnosed with adrenal fatigue (by another Dr) who saw my pupils fluctuating in and out when he shone a torch in them - not surprising after 3 months of freaking out and insomnia!

Anyway - finally saw Dr S last week, who confirmed what the Opthamologist, Neurologist, and I suspected: MAV. I’v been on Pizotifen for a week, and getting some side effects, but it does seem to be helping somewhat - although it’s to early to be sure, and I’m still on low dosage (0.5mg).

So yes, MAV does fit the symptoms you mentioned.

I had never had a classic migraine before, but had had some rare occasions of Acephalgic Migraine (spots/colours/blind spot in left eye for 20mins to an hour, with no headache) about once a year or so since I was thirty - never really thought about it much 'til now. It was always when I was tired, had too much coffee, and usually around bright lights (first one was on a floodlit football pitch!)
My mother and grandmother had history of bad, but classic, migraines, though.

The explanation for it ‘coming out of the blue’ seems to be that something (could be chronic pain or stress, or could be something traumatic) pushes your CNS (central nervous system) a bit further than it can take (in my case probably multiple traumas of accident/surgery/illness on top of an already stressful job/life) and the brainstem gets aggravated - so it then (if you get MAV) doesn’t correctly process the information from eyes, ears and body, and that’s why you feel weird, dizzy, spaced out, brain doesn’t work properly, detached from surroundings, photophobic, visual distortions etc).

My guess is this condition is so traumatic in itself that it continues the brainstem irritation because it stresses the very things that are already stressed as the brain tries to solve the puzzle of why all these signals don’t match up - and you get into a vicious cycle. and of course all this makes you freak out so you add anxiety/fear/insomnia/thinking you are dying etc into the mix. More brainstem stress = more MAV.

Maybe. That’s my theory anyway.

If you are using a computer a lot: try turning the brightness way down, and wearing dark glasses or rose-tinted glasses. it does help somewhat.

I’m a week into pizotifen and it has increased the amount of time i can spend on a computer from <15 mins to >1hr so far. I can now also watch TV for the first time in 3 months!

that’s all for now!


#10

This is the crux of it. But no its not the central nervous system, the migraine is surely developing in central cortex. I did not injure my central cortex, its completely fine. I injured my ear and I have all the issues of MAV and have probably had every one of its chronic symptoms.

We are NOT being told the whole story by doctors, this is NOT an issue with the brain, like you point out it is a reaction from the brain from issues with the senses, in my case my left inner ear which is swollen (I know this because together with other MAV symptoms I have chronic persistent tinnitus and occasional ear pressure/pain)

Its very interesting to look at the controversy of the diagnosis and treatment of perilymph fistula (PLF) in the 1980’s which lead to a lot of apparently ‘unnecessary’ operations. The operations themselves MAY have been unnecessary (because many believe these fistula’s spontaneously heal given enough time), but because of this controversy the condition was almost deliberately ignored by many neurologists/ENTs because they didn’t want to be associated with the poor reputation of those at the centre of the controversy .

I believe MAV is definitely ear trouble. We have this new diagnosis purely because PLF and Secondary Hydrops are hard to diagnose (PLF requires surgery to find, and only then if you are lucky) so they invented this new category that overcomes the political controversy by not assuming a hard to prove underlying cause.

Please bear this in mind when you are searching for answers - there is a huge political/medical dogma thing going on here. In time, science will eventually clear this up, but we are still at a very early stage in development of ear medicine:

  • We don’t know what causes a vertigo attack nor what is happening in one (I have my theories, but so do others)
  • We don’t know why someone gets menieres
  • We don’t know the extent to which people suffer from PLFs as there is no discrete conservative test (Japan is developing one)
  • We don’t know for sure what causes a migraine (though there are strong hypotheses)

MAV is only a migraine condition in so far as you have a migraine, but its actually just a class of condition that includes a set of symptoms. To be diagnosed with MAV you have to have all its symptoms. Its not assuming that migraine is the cause.

imho the persistent dizziness is NOT migraine, its sensory confusion in the brain caused by a sensory mismatch. That mismatch is almost certainly dysfunction in one or both of your ears, most probably one (setting off the mismatch).

The other point is one of risk: what is more likely to get injured? Your ear or your brain? Definitely your ear! It is far more exposed than you brain which is extremely well protected. The inner ear is still pretty well protected, but there are weak points and is connected to your middle ear and its bones at two windows. It’s these two windows and their patency which is surely the area of greatest risk. My surgeon is sure that I breached one of my windows when I stupidly pointed a shower into my ear. I got ‘MAV’ as the breach healed. My MAV is actually a build up of pressure within the inner ear that occurs when there is an intermittent leak. I suspect that I’m far from alone in having this kind of injury, and many people with MAV have a similar issue. Afterall, my symptoms are just like most on this board … so what does this tell you …?

The other REALLY tricky thing about ear dysfunction is there can be months or years between cause and symptoms. My ENT told me that after a fistula, it can take up to years for secondary hydrops to be obvious and cause trouble. Assuming for a moment MAV = Secondary Hydrops that means that its very hard for anyone to remember when they might have injured their ear and relate it to their current chronic condition. In my case I injured my ear 5 months before ‘MAV’ came on. It initially healed after 5 weeks of severe imbalance and I thought that was it … not so …

All in all this is a very confusing condition … Best of luck everyone!