Long story short - Iām thinking Iām needing a neuro that does more than specialize in migraine disorders.
When all this began - testing showed a slight deviance in my ENG test which he sort of scoffed at, in the beginning. The VEMP results were abnormal but the neuro, by his own admission, commented that he wasnāt familiar with that particular test. He is firm in his belief that I have MAVā¦but also stated that I have a vestibular issue that is exclusive of the MAV. It is his contention that vestibular migraine is dizziness that triggers migraine - and that MAV is migraine that manifests as dizziness. Iām back on Dyazide to help with do away with sodium/fluids and Iām been given a little more liberty in titrating up my Ritalin when I experience breakthrough dizziness and exhaustion.
I understand that both terms are interchangeable and donāt really define two, seperate conditions, and yet, this seems to be my neuroās position. This last visit was out of pocket since hubby, who works construction, hasnāt worked enough hours to qualify us for this quarter. @@ Ask me what I think about Union Dues that donāt cover insurance. I am currently researching local neurotologists where both my unilateral vestibular loss (as per audiologist, who did all my testing) and my MAV will be addressed.
The increased head-pain coincides well with drops in barometric pressure.
Twice in the past 2 weeks, dizziness and exhaustion were strongly present despite medication on two days. More MAV? More UVL issues? At this point, donāt care. Just want to get back to my ābackground noiseā dizziness and no exhaustion.
I had a brief look in the literature about the reliability of the VEMP test and itās in the same league as the caloric in terms of sensitivity. Baloh (and Halmagyi actually) describe the caloric as very crude and very unreliable. Given your neuro is unfamiliar with this test, he may not know its limitations (unless heās really read up on it) and Iād take that particualr result with a grain of salt unless the test reasult was strongly abnormal.
Thereās no difference to my knowledge between VM and MAV. The same feral dog labelled two differemt ways ā itās just migraine no matter how you look at it or what you call it. Iād love to ask him where he came up with these definitions considering they donāt exist in the medical literature. Perhaps he was trying to say that some other entity is triggering the migraine, such as what can occur if the trigeminal nerve is irritated ā from a bad tooth for example. I wonder if he was familiar with the fact that dizziness prior to a headache can be aura. I experience it this way sometimes where a dizzy episode will go on for an hour, then stop completely and then a headache kicks in.
I am all ears, Scott. I know only that the dizziness persists,as does the head pain, nausea, ear fullness and space-head. It also
gets worse with lights, and sound and weather change. And when luck is with me, i am sometimes treated to my very own, private fireworks display.
And until june, rotational and non-rotational dizziness lasted no more than a few days. and for the past couple of weeks, even my symptom management is unreliable.
this afternoon, the fullmess in my ears seems to have taken up the better part of my head, too.
Marie, At one point I asked one of my doctors if there was a difference between vestibular migraine and MAV and/or any other related terms as I once heard that in one the migraine causes the vertigo and in the other the vertigo causes the migraine (but never could remember which is which). For what itās worth, he said there is no difference, there is no such thing as vertigo causing migraine as vertigo is a symptom and symptoms donāt cause diseases. To say vertigo causes migraine would be like saying a runny nose causes a cold. Or something like that :? . Though I imagine like everything else with this disease you can get a different answer depending on who you ask so Iām really not sure what is true, Iām just passing along what I heard.
Hand on my heart, I believe you. What you say makes sense. I am not, however, the first person to have been told that dizziness can trigger and/or make migraine worse AND, surprisingly enough,also been told that migraine can manifest as dizziness. Not saying itās right. Just sharing what I was toldā¦and am happy for the input Iām getting.
This is where itās at, with some new info from the literature to clear it up:
Migraine causes headache first and foremost with dizziness being the second most common symptom of migraine disease (Baloh). When dizziness is a major factor in migraineurs, itās labelled migraine associated vertigo (MAV) or vestibular migraine (VM) or migraine associated dizziness (MAD) or migrainous vertigo (MV). All the same.
However, a literature search shows that dizziness DOES precipitate migraine. But it should be made clear that the dizziness in this case was induced by caloric stimulation. In migraineurs, this sort of stimulation acted as a trigger in the same way lack of sleep, chocolate, periods, or hair washing does (me). This observation is in keeping with the clinical observation that sensory stimulation in other areas such as auditory, olfactory and vision (visual vertigo), are known migraine triggers. Furthermore, a patient who has migrainous vertigo is more likely to experience a migraine after vestibular testing. This is a very good piece of information because it explains why migraineurs suffer so much when subjected to the caloric. It nearly killed me. So a non-migraineur who is hit with VN or whatever, and then has a caloric test is quite likely to walk away unscathed whereas someone with migraine disease suffers for days after the test (I was a wreck for 2 weeks). You could almost think of it as being forced to sit down and eat 5 pizzas covered with cheese and pepperonis (yum). Youād probably pay heavily for days.
What this means in this case is that it is feasible that someone with another dizzy disorder such as Meniereās or PLF or VN could have migraine headaches being kicked off by the dizziness being inflicted on the vestibular system. This is what some of these neuros are referring to as āvestibular migraineā. They are using the term loosely and incorrectly in my opinion because itās confusing and not defined this way in the literature. So the mod on the other forum who was told she has vestibular migraine (and she said it could not be treated!!), may have MD (or something else causing dizziness) which causes her headaches. But on the other hand she apparently has MAV too. Itās impossible to differentiate these two scenarios. If such a person simply treats their migraine, then it wouldnāt matter either way. That individualās threshold would increase and dizziness from the external source may not eventuate. But MD and MAV overlap anyway. I donāt see the point of telling someone they have āvestibular migraineā defined as being triggered by dizziness when statistically, the odds of it not just being MAV are huge. You might want to clarify this to that mod (and risk being banned) before she misinforms hundreds of other people.
Take home message: if it aināt MD, MDDS, PLF or BPPV, then alter lifestyle to suit migraine and move on to a med if thatās not enough.
This is where itās at, with some new info from the literature to clear it up:
Migraine causes headache first and foremost with dizziness being the second most common symptom of migraine disease (Baloh). When dizziness is a major factor in migraineurs, itās labelled migraine associated vertigo (MAV) or vestibular migraine (VM) or migraine associated dizziness (MAD). All the same.
However, a literature search shows that dizziness DOES precipitate migraine. But it should be made clear that the dizziness in this case was induced by caloric stimulation. In migraineurs, this sort of stimulation acted as a trigger in the same way lack of sleep, chocolate, periods, or hair washing does (me). This observation is in keeping with the clinical observation that sensory stimulation in other areas such as auditory, olfactory and vision (visual vertigo), are known migraine triggers. Furthermore, a patient who has migrainous vertigo is more likely to experience a migraine after vestibular testing. This is a very good piece of information because it explains why migraineurs suffer so much when subjected to the caloric. It nearly killed me. So someone who was hit with VN or whatever, and then has a caloric test is quite likely to walk away unscathed whereas someone with migraine disease suffers for days after the test (I was a wreck for 2 weeks)., PLF or BPPV, then alter lifestyle to suit migraine and move on to a med if thatās not enough.
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After the testing, I had trouble lifting my head off the pillow for a couple of days. Then a few more to actually be able to get up to eat with the rest of the family.
Thank-you for the explanation, Scott and for going through the trouble of putting it all together for me.
Great work Scott! I think what you are saying, and please correct me if I am wrong, is that yes, dizziness or vertigo can precede or cause a migraine headache if dizz/vert is a trigger for that particular person. But itās not called vestibular migraine anymore than a migraine headache that is triggered by chocolate is called a chocolatus migraine. Well, I suppose you could call it vestibular migraine but everything I have read says all those terms (MAV, vestibular migraine, MAD, etc) are used interchangably and all mean the same thing - a migraine that causes vertigo, not the other way around.
If one has dizz/vert that causes a migraine, they would need to work on fixing the problem that causes the vertigo in the first place, as opposed to working on fixing the migraine, right?
BTW- I just took a quick peek at the āothe forumāā¦ maybe you can post this there as well :lol:
ā End quote
Thanks Lisa ā¦ I would but over there it results in a ban if you contradict a mod. Adam and I were both banned years ago about the same time for being ātoo scientific and for harrassmentā. LOL and sigh ā¦
But the good thing that came out of that fiasco was mvertigo.
MJ ā if testing crushed you like that, it certainly is another piece of evidence that migraine is behind it all. Iāll never forget that caloric test. It really was devastating ā¦ and it was before I knew about valium or any drugs at all for that matter.
I think what you are saying, and please correct me if I am wrong, is that yes, dizziness or vertigo can precede or cause a migraine headache if dizz/vert is a trigger for that particular person.
Yup, that would be true but imagine trying to work out if this was really the case or if it was just in fact MAV. I get tons of dizzy episodes that directly precede a migraine headache. In the study, the migraine came 24 hours later. So perhaps that might be an indicator. However, itās still weak. Unless there is clear cut evidence that the dizziness is separate from the migraine condition, I canāt see how it could be isolated.
But itās not called vestibular migraine anymore than a migraine headache that is triggered by chocolate is called a chocolatus migraine.
LOL. I love that. How about migrainous chocolate or chocolate associated migraine (CAM)? āHi, I suffer from CAMā.
Well, I suppose you could call it vestibular migraine but everything I have read says all those terms (MAV, vestibular migraine, MAD, etc) are used interchangably and all mean the same thing - a migraine that causes vertigo, not the other way around.
Yup, thatās exactly right.
If one has dizz/vert that causes a migraine, they would need to work on fixing the problem that causes the vertigo in the first place, as opposed to working on fixing the migraine, right?
True, but imagine the trouble you would have if the whole thing was really a grey area. My guess is that such a situation would be rare and that if someone had migraine and also dizziness that the migraine would have its tentacles wrapped up in causing the dizziness.
I am trying to wrap my head around this idea of chicken and egg migrane and vertigo. What struck me first MJ is that your neuro told you the following:
vestibular migraine is dizziness that triggers migraine
What that means, when you strip back the adjectives is - migraine triggers migraine. Huh? That donāt make no sense to me.
In trying to make sense of this it appears to me (and guys, please set me straight if Iām getting muddled here) - migraine is migraine is migraine. There are different triggers and there are different symptoms but that at the core remains the disease migraine. For most people dizziness is a manifestation (ie symptom) of migraine and perhaps for a few dizziness (eg going on a rollercoaster or similar) could trigger a migraine.
Am I right?
And am I then right in thinking that the way we manage migraine (as there is no cure) is to try and avoid the triggers (lifestyle) and stomp on the symptoms and calm the migraine brain (medication).
I will not feel bad if Iāve got this wrong and/or donāt really understand as it seems some of the neurologists donāt either and they are a hell of a lot smarter and better educated than me!
In the same way a heavy smell or strong taste or visual stimulation can trigger a migraine, so too can strong input through the ears. I know loud music for a long period of time can set me off. But in this particular study they worked out that caloric stimualtion (which, letās face it, is huge) caused a migraine within 24 hours in people with documented migraine illness. It set off 19/39 (49%) of them compared to 1/21 (5%) of non-migraineurs. So this is a discrete outside cause ā nice and clear cut. If someone fired water into my ears and induced dizziness I would be trashed, no question and migraine dizziness would surely set in once the caloric effect wore off.
Itās still a bit convoluted because they then say that if you have BPPV it could possibly trigger a migraine given this result, however, we know that BPPV is caused by migraine in a lot of people ā 3x more than any other cause in idiopathic cases. So does the BPPV attack trigger a migraine or did migraine trigger the BPPV? In my case, a BPPV attack two years ago caused me to finally realise I had migraine and not BPPV triggering migraine. Halmagyi agreed.
I just find it very hard to get my head around someone having a dizzy disorder separate from migraine if they actually had migraine. Dizziness is such a common symptom of migraine ā in millions of people ā that even if there was a separate cause at first, I bet it would be taken up by the migraine brain pretty fast. Does that seem logical to you? I could argue thatās what happened to me. I had VN which caused huge dizziness and wrecked my vestibular system and then it all evolved into MAV. So maybe the VN was like 300 fat kids hitting the pool all at once. Migraine went off like the 4th of July and Iāve been dizzy ever since ā migrainous vertigo took over.
What say you?
Scott
ps. that was so not condensed. :lol:
edit: they go on to say that having a history of migrainous vertigo also has a significant effect. Such people are most likely to have a migraine after caloric testing versus those with other forms of migraine. All of the migraineurs in this study had experienced vertigo with their migraines.
I say instead of just teaching med students (an earlier suggestion of mine), Scott, you need to get yourself to the next international gathering of neurologists and straighten them out! :!:
I have 2 comments to add:
First, I think itās important to mention that some MAV or MAD people have relatively little (or even zero) headache disablity, so when they talk about āmigraineā they donāt even think headache at all! So the concept of the āmigraine brainā is very useful because it reminds us that the term migraine really refers to the many various manifestations that migraine has. One can be dizzy, have visual auras, numbness in the extremities ā¦ oh yeah, and headache too. Unfortunately, this dizzy bit can be chronic. (I guess headache can be too, but those poor folks check into hospital, from what Iāve heard - sheesh!)
Second, ātoo muchā of just about anything isnāt good (exception in my book: dark chocolate), and dizziness can beget more dizziness, whether you got it because of your migraine brain or you spun around in a circle. Itās possible that some of our dizzy spells may come on from something other than migraine - a too vigorous ear wax wash (squeeze that bulb of water too hard - yow!), a rollercoaster ride, whatever. But then one of those non-migraine dizzy spells could trigger a migraine cascade that could lead to another dizzy spell - or worse, our chronic Migraine-Associated Dizziness.
So the concept of the āmigraine brainā is very useful because it reminds us that the term migraine really refers to the many various manifestations that migraine has. One can be dizzy, have visual auras, numbness in the extremities ā¦ oh yeah, and headache too.
Great good point. I was thinking today how misleading just the term āmigraineā is. Itās synonymous with headache to most people, yet itās completely off the mark.
Hereās the article if anyone wants to read the whole story. Scott 8)
I think I get it. In a nutshell vertigo is a symptom (one of many) of migraine, plain and simple. In the second nutshell the migraine brain is sensitive and if too much is going on all sorts of bad things can happen.
By way of example. Years ago when I had optic neuritis, intially all the doctors were telling me it was a long and nasty migraine (they knew I was a migraineur). Then, when tests confirmed optic neuritis, they thought it could be MS (optic neuritis very highly correlated with MS) but the MRI was clear, as was a second one about 18 mths ago. So, at the time, the doctors ended up speculating a virus must have set off the optic neuritis as it was not related to MS. What I think actually happened (and Halmagyi agrees) was that I got MAV as well. So what Halmagyi and I think happened was the virus kicked off the optic neuritis which kicked off the MAV - as it was all too much for the migraine brain. So it turns out those original doctors were right - migraine, but also optic neuritis.
But yes - given how weird migraine is - with auras and symptoms and thresholds etc as well as all the different terms - vestibular migrane, MAV, MAD, ocular migraine etc etc it is all quite confusing. Perhaps it would be clearer to just say āmigraine - presenting with vertigoā or āmigraine - presenting with headacheā or āmigraine - presenting with abdominal disturbanceā and so on.
Scott - what is your view on Halmagyiās description of ācycle of migraineā when the symptoms are constant? Given that migraines are traditionally understood as having a start and end point that does make sense to me - that one is just getting slammed with back to back migraines. So if thereās a few hours or days of waning of symptoms that might indicate a brief break in the cycle?
What you say makes sense. I am not, however, the first person to have been told that dizziness can trigger and/or make migraine worse AND, surprisingly enough,also been told that migraine can manifest as dizziness. Not saying itās right. Just sharing what I was toldā¦and am happy for the input Iām getting.