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A discussion with Dr Robert Baloh, MD

Hi All,

I’ve transcribed a discussion with Robert Baloh on a whole range of issues dealing with migraine, MAV, and medication. Baloh spends most of his time in research, particularly cutting-edge genetic research, and sees patients only twice a week. There’s a quite a lot here and, what really surprised me, was his use of Citalopram – one of his favourites for migraine. First time I’ve ever heard that from a neurologist! He does not like using multi-pharmacy for migraine because there is no evidence to back it up.

Scott 8)


[size=130]Baloh notes[/size]

– most thorough migraine research (genetics) is happening in Finland under A Palotie who just completed a large study isolating a new gene.

– the trouble is we’re only just learning and understanding what migraine is and the factors that cause it. Most ENT doctors don’t have a concept at all about this.

– the first thing to realise is that migraine is not just a headache. Migraine is a genetic disease; headache is the most common symptom but only one of many symptoms. Vertigo is the second most common migraine symptom after headache. Headache and dizziness do not occur together and is one of the mysteries of migraine.

– most patients studied by Baloh who have been told they have Meniere’s in fact have MAV. ENTs tend to think that recurrent vertigo is Meniere’s because that’s all they tend to know about in this case. MAV is by far much more common than MD.

– Migraine never goes away because it is a genetic disease, however the symptoms do come and go and it will likely lessen over time. Hormonal factors in women are very important and as women age, symptoms will likely lessen more and more. This is very characteristic of the disease. Hormones are the biggest trigger in women – tips the balance and BAM, symptoms kick in.

– there are triggers for migraine symptoms: stress, lack of sleep, eating patterns, certain foods are MAJOR triggers but these are NOT the cause. The cause is a gene or some combination of genes. Some migraineurs have single gene disorders. People under stress in this group have had spells while others were fine even though they definitely had the gene mutation.

– whatever a person does, say with coffee intake, or sleep, it must stay consistent (assuming coffee is not a personal trigger). If you drink 1 cup per day, don’t suddenly have 3 cups one day.

– re the migraine diet: if you can identify an obvious trigger, avoid it. This is common sense but do not become a fanatic where you are not able to eat anything as this will not do you any good. In most people the diet is a minor issue and people identify certain triggers but to go on a rigid extremely limited diet is not useful.

– pinning down a specific food trigger is very difficult because it can often be a number of factors. Chocolate may be a trigger while under stress but is otherwise not. The number of triggers can be huge in this way and so Baloh therefore focuses on the MAJOR triggers which are sleep, and eating patterns (spreading meals out over time). Avoiding aged cheeses, red wine, hot dogs, MSG is a good idea because of the nitrites they contain (not MSG).

– there is no consistent damage to the inner ear with migraine. This is a chemical thing, with some alteration in the channels of the inner ear. There are “normal” times but other times it’s triggered off and is therefore abnormal. This notion we have of a damaged ear and the brain will compensate is incorrect. It cannot do that. If it’s damaged it’s transient and then goes back to normal and there’s no need to compensate any longer (true for vestibular neuritis but not MAV). Most migraine patients, in-between attacks, are perfectly normal. Vestibular function returns to normal.

– the ENG and VEMP tests are very crude and not particularly sensitive. Clear damage from VN will generally show up in such tests. The caloric test is very crude with a 30% variance still being classed as normal. Nobody gets a perfect zero response on a caloric. Just about everyone falls into the 10–20% range.

– Baloh has seen people with MAV who have a persistent illusion of tilt going on. Sometimes a sudden tilt or it may be persistent. This symptom is more likely originating in the brain and not the ear – i.e. it’s a chemical and not a structural problem. The tilting is perceptual and if tested, such a person would come up as performing normally. So it’s common in migraine to have illusions of motion and illusions of tilt (bouncing too).

– Citalopram (Cipramil/ Celexa) is one of Baloh’s favourites for migraine. In genetic studies, migraine and depression run together and so the same drugs are effective for both. The problem is there are no controlled studies for any drug in migrainous vertigo but there are lots for migraine headaches. Drugs like Celexa have been shown very consistently to be effective for decreasing frequency and severity of migraine headaches in controlled studies.

– a big problem is nobody can agree on how to define migrainous vertigo; nobody wants to take the effort to do the work on this – it’s very difficult work. It’s a big job. The drug companies aren’t enthusiastic … when it is defined is hard to say at this point.

– we know things such as barometric pressure can trigger an attack; people have an altered area in the brain where visual motion is processed … fluorescent light is a known trigger. Vision in the periphery is processed differently.

– about 25% of people with migraine will have vertigo attacks and about 2/3 have visual motion sensitivity.

– Important to understand what we’re dealing with. It’s a life-long susceptibility and certain things trigger it at certain times. Very often we can see the headaches get much better and the vertigo attacks become much worse and then it can reverse back again. They’re not the same thing (headache and dizziness). The truth is we don’t even know what the headaches are or what causes migraine exactly. There is a lot of mystery to this … you may ask how can this be when it’s so common but sometimes it’s the common ones that are the hardest ones to crack. 10% of the population has migraine; that’s 1 in every 10 people … it’s a highly prevalent disease. What other disease do you know that affects so many?

– There are several genes involved in some with more rare or severe syndromes. Sometimes medications can cause symptoms to totally disappear and sometimes they vanish spontaneously. Baloh is convinced the medications make a difference but be clear that none of these meds are “cures”. All we know is that they cut down on frequency and severity by 50% on average when they are effective. There is no evidence that any medication “resets” the brain. When you go off the meds, sometimes the symptoms don’t come back which is yet another mystery.

– Do not get into the habit of looking for endless doctors once you have the diagnosis because it can feed into the cycle. Accept the diagnosis. It’s natural to always wonder and look for a more definitive answer. Focus on lifestyle changes: sleep, eating patterns, regular exercise, vigorous exercise, meditation or other relaxation techniques. The medications are just a help as well; they’'re not the full answer.

– the question of whether multiple drugs cuts down further on frequency is really something we don’t know. There’s no evidence in prescribing multi-pharmacy for migraine. Baloh is hesitant to do so because you start to get into issues of interactions. Baloh would like to see evidence that even one drug works for MAV. Before considering more than one he would like to see just one working over a period of time. If Baloh had the answers to this right now, he’d be the only one because nobody else does. People can certainly try things (multi-pharm) but be careful because there can potentially be short term and long term side effects. Again, having a 50% reduction in symptoms is a very good outcome because there will also be spontaneous remissions as well. Baloh is cautious with multi-pharmacy because he has little experience with prescribing this way nor has he seen data to support it. He certainly does see increased side effects.

– Baloh not happy with seeing daily use of Xanax. Taken daily will create a dependence and tolerance problem, but OK once in a while.

– Sound sensitivity and/ or nausea very common with this condition.

– If a drug is reducing symptoms by 50%, stay with it, give it time and work on lifestyle to knock out the rest. Do not work under the notion that by just finding the right medicine that this will suddenly all vanish. Sometimes switching to a different drug in the same class can give more benefit (SSRI for example). It’s remarkable that even though all of the SSRIs work by the same principle, the results can vary markedly between individual SSRIs. Again, if we hit the 50% mark in symptom reduction then we’ve hit on a good drug. If there’s no effect or very little then we do a lot of switching between meds. The problem remains that there isn’t good data on treatment and it’s mostly empirical (observation, experience, or experiment) and that’s why many doctors have differing opinions and a different experience. It’s dangerous for a doctor to base his treatment based on his experience alone because any single doctor will have limited experience and is usually biased (confirmation bias). What we need are a large series of controlled studies which unfortunately just don’t exist.

– Difficulty in eye focusing is a common migraine symptom as is variable amounts of dizziness throughout the day.

– Propranolol causes fatigue and can trigger depression… a number of side effects.

– There is no data on and tremendous variability in the age where this peaks or drops off. It can happen at any time … no one knows.

1 Like

Very interesting. Thanks for that! Does he just use Celexa for MAV or for “regular” migraine as well?

— Begin quote from "scott"


– Hormonal factors in women are very important and as women age, symptoms will likely lessen more and more. This is very characteristic of the disease. Hormones are the biggest trigger in women – tips the balance and BAM, symptoms kick in.

Most migraine patients, in-between attacks, are perfectly normal. Vestibular function returns to normal.

– the ENG and VEMP tests are very crude and not particularly sensitive. Clear damage from VN will generally show up in such tests. The caloric test is very crude with a 30% variance still being classed as normal. Nobody gets a perfect zero response on a caloric. Just about everyone falls into the 10–20% range.

— End quote

Great work Scott, thanks for putting this together.

A couple comments and a question.

  1. FIrst the comment on hormones and women. I seem to be wired backwards in many ways. IF what I have is MAV the vertigo all started after menopause - that is when my symptoms got worse.

  2. He says in between attacks most migraine patients are normal. Seems that is not the norm here. Seems most of us have the 24/7 dizzy or rocking or motion sick or similar types of feelings. I’ve read several places that MAV’ers tend to feel lousy all the time. I don’t know if I have ever felt perfectly normal betwen attacks.

  3. Can you explain what he means by falling into the 20-30% range? I’m not sure what this means.

Again, thanks for putting this together, it is very informative.

Book

With much gratitude, Scott. It must not have been easy to set up a conversation with Dr. Baloh. One thing I would always like to ask him is how does he differentiate between MdDS and MAV. I know that he diagnoses both and acknowledges “spontaneous” MdDS. He must have some type of criteria. Also, he is supporting the research by Cha.

Unfortunately Celexa and all other SSRI’s work in paradox for me. Now am back on Klonopin for a short visit after a violent reaction to Verapamil, could not get vertical for quite awhile.

Still looking into life on a boat but have yet to find an accepting community.

Sal

Thanks Scott - that’s very interesting stuff, and informative.

Vic

Thanks Scott!!

Great work, but I am wondering what he means when he says…possible long term side effects when you use multi-pharm… I am on 3 and have had no side effects, but now I am worried that I might get long term side effects???

Thanks again!!
Pam

Lisa – he said Citalopram was his favourite for migraine but thought it was not great for dizziness per se. But having said that, it totally mopped up my dizziness, has decreased Emma’s symptoms overall by 50% and I know it elimianted MAV in another girl I know here in Sydney. So, like with all of these meds, it’s worth a try. If it works on migraine, I can’t see any reason why it may not also knock out dizziness.

Book – not sure what he would say about this kicking in after menopause. That must have been your hormonal trigger. There’s no reason why with time symptoms will lessen for you. He said this tends to happen for everyone. I wonder if topping up hormone levels could give you any relief? I haven’t seen any evidence for this.

Yes, he did say “in between attacks” but he does understand that people with MAV have the illusion of motion 24/7. Nobody really understands why but it seems to originate in the brain and not from the inner ear. With lifestyle changes and a med and time it should get better.

With the ENG I think there is a “normal” response that they start with – some arbitrary number that would indicate a 100% totally normal response based on some sort of average. But it’s crude and so even someone with no balance issues at all might give a result that was 30% off the average. It’s meaningless really unless you register a huge deficit which tends to occur in a massive VN attack. Funny thing is, I am certain I had VN but my ENG was “normal”. Go figure.

Sally – he never touched on MDDS and so I don’t know how he makes that diagnosis. What happened for you on Celexa?

Pam – don’t fret about your use of more than one drug. If it’s working and you feel fine then I think that’s cool. He is just not comfortable with prescribing more than one med with this because 1) there is no scientific evidence that it is any better than one (no clinical trial) and 2) he has little experience in doing so. He lacks experience I guess because he won’t go there. He is very wary about relying on his own anecdotal observations.

Scott

Hi Everyone,
It’s been a while since I last visited this site; I cant believe the work Adam and Scottie have done, fantastic! :smiley:
Thanks for your dedication in helping Mav’ers .
Baloh’s report is fabulous!
I’ve suffered with MAV from age 29 and fading out daily, since I was a small child. I’m now almost 47.

It’s a refreshingly honest change, no fales hope here! Thanks Dr Baloh and thanks Scottie, for all your hard work. :wink:

Jen

Scott:

Great read…

Pam, I am on 3 meds so as long as your are able to function then don’t worry …

Hey Scott,

I want to commend you for the the great interview you had with Dr. Baloh. This information was very interesting and helpful.

Dr. Baloh states that he’s not that happy with MAV folks using Xanax…but when I saw him a couple of years back… he was ok with it. I take one tab daily (lowest strength you can buy)…and it really helps me to have a life. Many of the other anti-depressants have not worked so that is why I stick with the Xanax…and one tab of Verapamil.

Thanks again for sharing the interview with us.

Joe

Excellent interview and notes. Thanks a million for this!!

— Begin quote from "bookworm"

— Begin quote from "scott"


– Hormonal factors in women are very important and as women age, symptoms will likely lessen more and more. This is very characteristic of the disease. Hormones are the biggest trigger in women – tips the balance and BAM, symptoms kick in.

Most migraine patients, in-between attacks, are perfectly normal. Vestibular function returns to normal.

– the ENG and VEMP tests are very crude and not particularly sensitive. Clear damage from VN will generally show up in such tests. The caloric test is very crude with a 30% variance still being classed as normal. Nobody gets a perfect zero response on a caloric. Just about everyone falls into the 10–20% range.

— End quote

Great work Scott, thanks for putting this together.

A couple comments and a question.

  1. FIrst the comment on hormones and women. I seem to be wired backwards in many ways. IF what I have is MAV the vertigo all started after menopause - that is when my symptoms got worse.

  2. He says in between attacks most migraine patients are normal. Seems that is not the norm here. Seems most of us have the 24/7 dizzy or rocking or motion sick or similar types of feelings. I’ve read several places that MAV’ers tend to feel lousy all the time. I don’t know if I have ever felt perfectly normal betwen attacks.

  3. Can you explain what he means by falling into the 20-30% range? I’m not sure what this means.

Again, thanks for putting this together, it is very informative.

Book

— End quote

I was also glad to read this given some more recent responses to one of my entries. It is also consistent with my neurologist’s promise that MAV doesn’t mean dizzy-forever. I’ve always found that support boards are usually places where people who are suffering from their condition, meet. Those who get better usually move on to other things. Very few stay on to stay on to give support to others who aren’t as fortunate.

Hi Guys, I’ve just got a couple of comments,

Book (and Scott) - re the periods between attacks. I’m not sure that Baloh was saying that periods between “attacks” for MAV means that sufferers would feel 100% OK. I can only speak from my own experience which is long periods of MAV - from a few days to several months at a a time, off and on over last 10 years.

When I have had MAV I have definitely had the symptoms wax and wane. Sometimes it has been really uncomfortable but I could still work, other times so bad I’ve been housebound. Sometimes it’s been really bad for days, then one good day, then really bad again. Sometimes it’s just got worse and worse and worse until I didn’t think it could get any worse.

Up until finally getting a diagnosis and med treatment (about a year ago) my MAV has always just “burnt out”, slowly, of its own accord. If I understand what Dr Halmagyi said then MAV means being in a cycle of migraines. Given that migraines are traditionally understood as having definite start and end points I take MAV to mean that we are pretty much just getting hit with back to back migraine. I’m only speculating here (I have no medical or scientific qualifications) but if someone like me, who has had a day or so of relief, or symptoms feeling slightly better or heaps worse I think that fits in with a model of a cycle of migraine - there just may be shorter or longer gaps between the migraines as well as more or less severe migraines.

My other comment is to MJ,

Please don’t feel that comments on this board questioning whether you may have MAV and/or some other condition(s) were meant in a skeptical or unkind way. My experience on this forum has always been that everyone is extremly supportive and genuinely interested in helping each other to get a correct diagnosis and treatment strategies. MAV is such a confusing condition, with symptoms similar to a range of other conditions. Hell, even most doctors don’t understand it or even know about it! With the number of people on this forum and new threads etc it can be difficult to keep up with where everyone is at (especially when you throw brain fog into the mix :lol: ). Finally, there are people on this forum who are well but who, in the interests of support and information sharing, do continue to post on the board.

Cheers,
Vic

Hey Vic – well said about what he meant about the attacks. Your case definitely outlines the different pathways this can take. Before I got slammed with the dizziness, I used to get 6-8 month episodes of head fog, neck pain, and headache. It all started in university during undergrad years. But then it would just stop, usually after a round of physiotherapy oddly enough. I remained free of it all for a good year or two and then I am quite certain I was struck with VN. That was the beginning of my now permanent cyclical migraine nightmare.

On another note, I have beenn giving more thought to whether or not I really did have VN after this Baloh discussion. The reason I think I did was because:

  1. It hit suddenly and hard and then escalated over 2 weeks as the GP predicted back then.
  2. The acute misery ran over a course of about 6-8 weeks at which point I felt better but still quite bad (MAV no doubt entering the scene).
  3. The dizziness I had then was nothing like what I get now. It was near constant rotational, merry-go-round stuff then.
  4. I still have strange deficits that seem like the result of nerve damage. I cannot play guitar without kicking off massive symptoms. I haven’t compensated for that because I haven’t worked it enough … it took me 2 years to be able to use ear buds again and listen to music without being instantly ill.
  5. I had a bizarre viral infection at the crash – burning ears and sinuses for about 2 weeks; no energy – couldn’t walk up a flight of stairs.

Sounds like VN to me. What do ya reckon? S

MAV is truly a strange beast. In looking back over my 25 years of migraine I can say the following about recognising what is and isn’t migraine. Or might be.

  1. My scintillating scotoma migraines. No doubt there - always know that’s a migraine. Sometimes the triggers are obvious, others not. It really does seem to depend on how “migrainey” the brain is at the time. Most of the time I’m cool with fluoro lights and storms, others, no way!

  2. In retrospect there are many things over the past 10 or so years which were variously “diagnosed” as virus, food poisoning etc, or not diagnosed at all (i.e, I just put up with it and felt inexplicably unwell). I am now, with the benefit of diagnosis and my own learning curve, sure that about 90% of those cases were actually MAV.

  3. Grey areas. May or may not have been MAV. Can’t be more specific than that.

For point 2, even that is weird. Again, sometimes my MAV has crept up on me, others I can pinpoint the exact instant, out of the blue, the MAV hit. For example, the latest attack, a year ago I remember as if it were yesterday. Sitting around playing Scrabble with my Mum and BAM, no warning, suddenly felt really, really sick. And it was all down hill from there for a month or so before I got a diagnosis, got the meds and then started climbing back up the mountain to wellness. That is a long and tough climb and sometimes you fall down a bit and need a rest. And sometimes you get sent on the wrong path and go round and round the mountain and find yourself at the bottom again. But I don’t want to push the metaphor. Allegory. Whatever.

So Scott, in answer to your question is it/was it VN, MAV or a VN MAV combo for you? Cripes. Who knows? I’d say you’re hovering somewhere between points 2 and 3 on that one. I reckon there is just about ANY symptom, other than a leg spontaneously falling off, which could fall into the MAV category. At one point during what may or may not have been MAV (see above re points 2 and 3) I was diagnosed with labrynthitis - is that the same/similar to VN? I’ve never checked up on whether I really did have Lab or not - if I did, were they related - who can say? According to Baloh, probably no-one - all too expensive and difficult for those greedy BASTARDS at Big Pharma :wink: .

Frustrating as it is I think Halmagyi’s on to something when he nods in that Zen like Yogi way and says “Migraines are weird. Migraines change over time”. Grasshopper.

Vic

First of all, THANKS, so much for this FORUM!! I was thrilled to have found it, and have read it often, since my diagnosis.
I knew that I had vertigo, but did not know it was MAV. I was examined by Dr Baloh in November 09, after a sudden, and extremely intense episode of spinning vetigo (I have been suffering from varying degrees of diziness for 6+years) He is a lovely man, who patiently listened to my story and I was relieved hear his unequivocal diagnosis of MAV sans Headache. As Scott stated, Dr. Baloh said it is genetic and one day they will figure out which gene combination causes it. He told me that I *could *try Acetazolamide starting with 125 mg, capping out at 250 mg. He asked me to discuss that with my internist. Eager for the “magic pill”; I asked my internist to prescribe it. Well, I never reached the 250 mg level. It turned out to not be a good drug for me. It may be due to the fact that I weigh only 105 lbs and it was too strong. I don’t know. It seemed to help my vertigo and eye tracking problems but it gave me horrid headaches which have never been a problem so I opted to stop taking it. I need to make a follow-up appointment but in the meantime I am back to 5 mg of Klonopin at bedtime which I have been taking for the last 5 years.

To Book…this whole problem started for me right at the onset of menopause with no other menopausal symptoms, not even hot flashes. Dr. Baloh said that MAV is often a result of fluctuating hormones, which happens at menopause and during menses.
Although I have gone long sessions where the symptoms have been quite manageable, I have never been symptom free since the onset. There are certain triggers, like fluorescent lighting (especially if they flicker), looking up, low lighting, or turning my head back and forth quickly. My most recent episode began after spending 4 hours in my industrial warehouse putting up shelving and sorting fabrics under flickering florescent lighting. Needless to say, I have not spent any significant time down there since then! This past July, I started on a program of bioidentical hormones, but, unfortunately, I have not noticed any change for the better. They are still “tweaking” my levels, using lab results to do so. They are hopeful that they are going to get to the bottom of my problem. I will let you know if it eventually works.

Hi there,

This past July, I started on a program of bioidentical hormones, but, unfortunately, I have not noticed any change for the better.

I have a feeling this is the “Migraine Program”? I was on it too and so was another member here. It did nothing for either one of us and ended up costing a fortune for nothing. In fact, it made one member feel 100x worse and turned her world upside down for 6 months. Be aware that the evidence backing up this program is very thin and is cherry-picked in Dzugan’s book. The idea that bioidentical hormones can eliminate migraine is baseless I’m afraid. I can point you to some articles on this if you like.

I think the biggest red flag with the whole Dzugan approach is the title of his book – “The migraine cure”. There simply is no cure for migraine at this point in time.

Best … Scott 8)

Hi Scott:
Wow! INTERESTING, to say the least. I am on the Dzugen method. I attributed my recent episode to florescent lighting and looking up, but it is very possible that it was caused Dzugan Method which I had been on for about 3 months at the time of my recent episode. Dr Baloh said that MAV often caused by fluctuating hormones. Obviously, you are aware of how they have you change the hormone levels 3 times a month…Fluctuating hormones??? It never dawned on me until your post. I am going to have to ask Dzugan about that. Thanks, for your insight!

Best,
Susan

Hi Susan,

Yes, be careful you aren’t throwing your money away on this pseudoscience. I lost over 2 grand on it … it really ticks me off but was my own fault. Hard lesson that one was.

Scott

This whole thread leading from Scott’s summary of what Dr Baloh thinks is really enlightening. Not least because some of the posts I could’ve written myself they describe my experience so accurately!

I’m a newbie here (posted ‘my story’ the other day) and I was reluctant to venture into another forum as I usually find them really depressing and wonder if they ‘feed’ my self perception of an ‘ill person’. However, this one seems full of normal people who can sensibly and articulately put what they’re going thru’ into words. It’s great to hear from people who are better too, as people who are better don’t usually hang around illness forums once they feel fine again!

Anyway, following Scott’s and others’ advice, I’ve checked out a bit about Dr S. at Medway Balance Clinic and Dr R Davies etc. at NHNN and I’m off to my GP later today to ask to be referred, probably to NHNN as I know some folks there. He’ll probably refuse and say they have no contract etc. with them but I’m taking hubby along as extra ammunition.

Meanwhile, have been feeling slightly better (this has GOT to be burning out soon!) although as soon as I say that it’s like tempting fate and bam! it’s back with a vengeance.

Btw - does anyone else hate it when people ask you how you’re feeling now (people who know about your illness) and you find it’s difficult to answer as the symptoms can vary so much in a day. Like get worse as soon as enter supermarket or arrive at school gate etc?

ANyway, I’m going to print off Scott’s post and carry round in my pocket I think - to help me stay sane and to show interested others…