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FAQs answered by Neurologists

Hi All,

Over the months we’ve had some excellent input from some of the top neurologists in the world in helping us to understand vestibular migraine (VM). This thread will be dedicated to posting their information to questions that have come up from time to time. I would personally like to thank them all for taking the time and making the effort in answering our questions and producing this excellent resource for mvertigo.

Dr Steve Rauch had this to say about mvertigo:

— Begin quote from ____

I am a big fan of your forum and refer all my VM patients there. In fact, I consider one of the key features of a VM diagnosis to be the process of patients reading the bulletin board posts at your site and self-identifying as VM. I am honored to receive your invitation and I’d be happy to try answering your “top 12 VM questions.”

— End quote

Best … Scott 8)

1 Like

[size=150]Steven D. Rauch, MD[/size]

Dr Steven Rauch (Professor of Otology & Laryngology, Harvard Medical School) from Massachusetts Eye & Ear Infirmary, USA, has done us all a great favour and put together this very comprehensive article on migraine and VM based on the “Top 12 Questions” submitted by members of the forum.


[size=130]Introduction[/size]

Let me start by thanking the moderators of this forum for the invitation to contribute answers to your “Top 12 Questions”. Next, I’d like to offer a brief general perspective on migraine and VM to provide some context for my answers to your queries:

In the modern conception, migraine is not just a headache. The best working definition I’ve heard is that “migraine is a global disturbance of sensory signal processing.” By this I mean that sensory information –- sensations –- are distorted and/or intensified. Not all sensations are involved at any given time. The migraine spectrum may include pain, numbness, or tingling on the skin, motion intolerance and dizziness or vertigo, intolerance of light, sound, taste, or smell. While most of the symptoms are in the head and neck, other parts of the body may be affected. The basis of migraine is in brain chemistry and appears to have a strong genetic component – often it runs in families. Thus, migraine is not “curable” in the conventional sense of permanent eradication. However, it is manageable. Over a lifetime, the spectrum of symptoms tends to change. It may be predominantly headache, with or without visual aura, at some time, but may become more of a vestibular disturbance or other part of the spectrum at other times. Migraine in childhood can present as recurring headache and/or recurring abdominal pains and/or recurring vertigo. Because migraine in many patients is sensitive to hormonal change, the symptoms often flare in relation to puberty, pregnancy, and menopause.

There are many triggers for migraine symptoms, including hormonal change, barometric pressure change, lack of sleep, hunger or dehydration, stress, and many foods. The chance of having migraine symptoms on a given day depends on two things: the patient’s threshold for symptoms, and the total load of migraine triggers that day. You can picture this like someone standing in a swimming pool: if the water level is at their upper lip, every little ripple will put them under water and they will suffer. If the water level is down at their waist, they can tolerate lots of sloshing without going under. Some MAV patients are living under water! Adopting a migraine diet and lifestyle “drains the pool” – i.e. it lowers the load of daily triggers. If a month or two of this approach fails to achieve adequate symptom control, addition of a migraine suppressant medication “makes you taller” – i.e. it raises your threshold for symptoms. By adopting one or both of these approaches, most patients (maybe 80%) can achieve a “zone” between their trigger load and their threshold (like the zone between the water level and the person’s nose) where they can live their life. This does not mean symptoms never occur – a big fat kid could jump into the pool and you might take it in the face – but it does mean that disabling symptoms are few and far between. The migraine lifestyle and diet has three parts:

(1) Regular schedule – every day should look like every other day; regular meals and don’t skip; regular sleep and enough of it; some regular exercise (even if it’s just a walk to the end of the block and back again).
(2) General medical “tune-up” – migraine symptoms are more likely to flare if there are other medical/physiological stresses on your system. Migraineurs should work with their other medical professionals if necessary to get control of other health problems, such as allergies, thyroid, blood pressure, blood glucose, hormones, etc.
(3) Migraine diet – there are many foods that are potential migraine triggers. The joke about a migraine diet: make a list of all the foods you like … you can’t have them! The simple way to remember a migraine diet: eat ONLY fresh food. You can eat fruits, vegetables or meats. You can cook your food. But all food must be prepared fresh when you want it. If you do this, you are pretty well on the migraine diet. The list of “Thou Shalt Nots” is long and sad:

  • nothing aged, cured, pickled, or fermented (cheese, beer, wine, alcohol, vinegar, soy sauce, yogurt, sour cream)
  • no caffeine (coffee, tea, chocolate)
  • no artifical sweeteners/sugar substitutes (especially aspartame)
  • no nitrites (deli meats – proscutto, pepperoni, salami, etc)
  • no sulfites (red wine, dried fruits – raisins, apricots, etc)
  • no nuts
  • no MSG (monosodium glutamate – take-out Chinese food, and virtually every packaged food in the grocery store – usually listed as “natural flavour additives,” not MSG, in the ingredients label)

Some doctors add many other food items to the restrictions list but an “all fresh” diet is really the core and the key to success. For those patients who do not achieve adequate symptom relief by diet and lifestyle, migraine suppressants can be used as a SUPPLEMENT to (not a SUBSTITUTE for) the diet and lifestyle. Migraineurs tend to be very sensitive to medications and often suffer many side effects. It is usually necessary to start on sub-therapeutic doses of medications and increase the dose in small steps over several weeks or months in order to achieve treatment success without provoking unmanageable side-effects. There are probably 40 drugs on the market with a migraine suppressant effect. Finding the right medication or combination of medications can take quite a while for some patients.

[size=130]Now on to your questions:[/size]

  1. Have you seen long-term VM cases who when finally treated with a migraine preventative for a lengthy period of time, go on to be VM-free minus that med? In other words does VM ever just permanently burn out with the aid of medication and remain so after removing the medication?

— Begin quote from ____

As noted above, migraine is not “curable” – it is part of your brain chemistry. The active symptoms may go in and out of remission over your lifetime, but once a migraineur, always a migraineur. In my experience it is common to see patients who have achieved excellent symptom control. When they come for a check-up and have been symptom-free for 4-6 months, half of them say, “I feel great. I don’t need these pills any more”. The other half say, “I feel great. I’m never going to stop taking these pills”. IF my patient has had 4-6 months of symptom control and IF they want to go off their migraine suppressant, we give it a try. If the symptoms relapse, the patient goes back on their medication(s).

— End quote

  1. It appears that many people who come down with vestibular neuritis (VN) or labyrinthitis frequently go on to develop VM (reported many times on the forum). Do you think VN or labs precipitates VM and, if so, why?

— Begin quote from ____

This is a complex topic. There are two important considerations. First, remember that 25-35% of women between puberty and menopause meet strict International Headache Society (IHS) criteria for migraine headache, and that 25-35% of migraineurs have migrainous dizziness or vertigo. If you do the arithmetic, this means that VM may occur in 5-10% of all women (men get it, too, but migraine is about 5 times more common in women than men)! Even if there was no special connection between VM and other inner ear balance disorders, on a purely statistical basis you would expect 5-10% of all women with inner ear balance disorders to also have VM. Thus, the observation of VM in many VN or labyrinthitis patients may just be a coincidence.

The second important consideration, mentioned in my introduction, is the fact that all kinds of physiological/medical stresses can trigger migraine. VN and labyrinthitis are certainly stressful! They may contribute to a cascade of symptoms that activate the migraine spectrum. For example, most patients with VN and labyrinthitis develop muscle spasms in the neck, which causes head pain, which can ramp up to trigger migraine; pain is a very common migraine trigger.

Finally, because migraine produces a generalised intensification of sensations, migraineurs who develop another balance illness are much sicker than non-migraine patients with the same inner ear problem. And the majority of migraineurs have had a lifetime of motion intolerance.

— End quote

  1. Is a person with VM who has previous inner ear damage or disease (VN, labyrinthitis, etc.) less likely to recover more quickly and more fully than those who do not? Likewise, are males or females more likely to have a favourable prognosis (i.e. permanent remission) perhaps because of fundamental differences in hormone levels?

— Begin quote from ____

As noted in the answer to Question #2, migraine is much more common in women. I am not aware of any data showing a difference in prognosis between men and women, and I have not observed one. Also as noted above, migraineurs who develop an inner ear balance condition tend to be sicker than non-migraineurs with the same illness. They are often slower to recover and at greater risk of incomplete vestibular compensation. In my experience, migraineurs are the only patients whose symptoms get WORSE when they attempt vestibular rehabilitation physical therapy. This is practically diagnostic of migraine. In fact, in management of inner ear balance disorders (VN, labyrinthitis, relapsing BPPV, Meniere’s disease, etc), a diagnosis of migraine trumps all of these other conditions – unless and until the migraine is controlled/suppressed, the treatments for the inner ear disease tend to be ineffective.

— End quote

  1. Why can VM initially be intermittent at the onset (brief episodes with long symptom-free periods), and then be followed by constant intractable symptoms that can be continuous for years if left untreated?

— Begin quote from ____

I have no answer for this. Sometimes this is true, but sometimes the condition evolves in the opposite direction – from a chronic problem to an intermittent one. Migraine spectrum is highly variable over a lifetime.

— End quote

  1. Are flu-like symptoms, fatigue, and aches and pains all part of a common set of symptoms associated with VM? Why?

— Begin quote from ____

Here is another “Why?” question. I am tempted to give a flip answer: science does not answer the question “Why?”, it answers the question “How?”. Religion answers the question, “Why?”.

These symptoms can be seen in migraine because everyone gets aches and pains and fatigue, and migraineurs have intensification of all manner of sensation – their symptoms are probably not different than non-migraineurs, they are just much worse.

— End quote

  1. Do you believe that bruxism (night clenching) plays any role in causing, promoting, or reinforcing migraine via stimulation of the trigeminal nerve?

— Begin quote from ____

Yes. There is strong clinical and research evidence that head and neck pain signals (carried in the trigeminal nerves) can trigger migraine headache. It is plausible that this mechanism might contribute to other migraine symptoms as well.

— End quote

  1. Is irritable bowel syndrome (IBS) common among your VM patients? Any idea what the link is with migraine and IBS?

— Begin quote from ____

See the answer to Question #8, below.

— End quote

  1. What are your thoughts on the underlying deficit producing the symptoms of migraine? Do you agree with current thinking that it may be the result of various channelopathies brought about by genetic errors? If so, do you think associated disorders such as IBS, CFS-ME are also a result of the dysfunction brought about by these errors?

— Begin quote from ____

There are clinical reports of an increased prevalence of migraine headache in patients with irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS), fibromyalgia, and possibly multiple chemical sensitivity syndrome. Does that mean that these mysterious conditions are all versions of migraine? Maybe, but no one knows. MAV used to be called “floating woman syndrome” and was thought to be a psychiatric condition in neurotic young/middle aged women. Now we know better. CFS, IBS, fibromyalgia, and multiple chemical sensitivity all share a similar story – more common in women, little or no objective/measureable abnormalities, and not much respect from medical professionals. It is tempting to see them as overlapping variants of the migraine spectrum. I believe many of my patients see improvement in these other conditions when we treat their VM.

— End quote

  1. Which medications do you personally favour for VM? It appears that other professionals in the field all seem to have differing opinions from Effexor to Topamax to the older tricyclic antidepressants (some neurologists describe TCAs as “messy agents”).

— Begin quote from ____

Prescribing migraine suppressant medication is complex. As stated earlier, there are about 40 different drugs on the market with migraine suppressant action. The choice of drug is based upon the patients general medical history and health, and the physician’s experience. I cannot make any specific treatment recommendations for patients whom I have never seen nor examined. In my own patient practice, my first choice of migraine suppressant is nortriptyline, a tricyclic. This class of drugs was invented over 50 years ago for treatment of psychotic depression. Dosing for that use was typically 300 mg three times daily. Nortriptyline works well as a migraine suppressant and typically achieves significant symptom control at doses of 30-50 mg/day (1/30th the dose used for the psychiatric indication). I typically start patients at 10 mg each night and increase the dose by 10 mg every 2 weeks until we get symptom control or unmanageable side effects. The maximum dose would be 100 mg. Other effective “first line” drugs are beta blockers (propranalol, atenolol), and calcium channel blockers (verapamil). Many neurologists prescribe topiramate (Topamax) or gabapentin (Neurontin) for migraine. Though they can be very effective, I have little experience with these drugs. They must be given three times daily, so compliance is low, and they are far more likely to cause unacceptable side effects. There have been recent rumors in the field of MAV that venlafaxine (Effexor) can be an effective migraine suppressant. This drug is a combined serotonin and norepinephrine reuptake inhibitor (in contrast to selective serotonin reuptake inhibitors – SSRIs - such as Zoloft, Paxil, and Prozac). I have prescribed it for some patients who did not get sufficient benefit from nortriptyline, but I have not had enough experience with it yet to judge if it is really a good choice.

— End quote

  1. Anecdotally, all of the SSRIs appear to work very well for VM but not migraine per se according to the science literature. Do you promote SSRIs more frequently for people with vestibular migraine? Have you personally noticed their efficacy in VM patients?

— Begin quote from ____

I am aware of the literature indicating that SSRIs are ineffective for migraine headache. I have not heard that they had any benefit for VM. I have never prescribed one for VM.

— End quote

  1. What medications would you suggest to someone who only has very occasional headaches but has all of the other typical VM symptoms on a daily basis that vary in intensity for no apparent reason: dysequilibrium, visual disturbances, light sensitivity, brain fog, aura, fatigue?

— Begin quote from ____

As noted above in Question #9, I cannot make a specific treatment recommendation in this forum. The type of patient you describe in your question is someone I would treat with diet and lifestyle for 1-2 months. If symptoms were still troublesome, I would add a migraine suppressant. Choice of drug would potentially depend upon other medical issues. My favourite first-line migraine suppressant is nortriptyline.

— End quote

  1. Do you find that drug monotherapy is usually enough for treating VM in your practice or does it usually require multi-pharmacy to eliminate all of the symptoms?

— Begin quote from ____

I have the impression that a combination of diet, lifestyle, and migraine suppressant medication can substantially relieve symptoms in about 80% of cases of VM. I do not have a breakdown of what percentage get adequate relief from diet/lifestyle alone, but off hand, I’d estimate about 25%. Likewise, I do not have a breakdown of what percentage of patients requiring medication need one medication vs multiple meds. Here I would estimate that the majority – maybe 75-80% - use a single drug. There is no medication that will enable a VM patient to ignore diet and lifestyle.

— End quote

The answers provided above are my opinions on the selected topics. I hope this information is useful.


[size=130]On Fibromyalgia[/size]

There is a very heavy overlap (“co-morbidity”) of migraine with fibromyalgia, with irritable bowel syndrome, and with chronic fatigue syndrome. I am certain I have seen some migraineurs whose fibro, IBS, or CFS improve when they treat their migraine with an appropriate combination of diet/lifestyle and migraine suppressant meds. It is tempting to think that these conditions probably co-localize in the brain somewhere, sharing some neural pathways – perhaps related to pain potentiation, etc. Alternatively, as you suggested, since migraine produces a global distortion and intensification of sensory phenomena, it may just make symptoms of these other conditions more dramatic.


[size=130]On Vestibular Rehabilitation Therapy (VRT)[/size]

My general experience is that most migraineurs cannot tolerate vestibular rehab until their migraine is under control. If they try VRT first, they usually quit after the second session because it makes them feel so ill. That said, Sue Whitney at Univ of Pittsburgh has research suggesting that there is VRT benefit in migraine.

As you well know, balance differs from all other senses in that all the other senses depend on only a single “flavor” of sensory input, while balance depends upon integration of multiple sensory channels (labyrinth, vision, somatosensory, etc). Since migraine screws up the calibration of sensory signal processing, sensory integration is deranged. I believe this is best operational definition of the balance disturbances seen in VM – a disturbance of sensory integration. If this model is correct, one would predict that VRT will not work until the sensory signals can be stabilised enough to allow for relearning of the integrative tasks (or for the signals to revert to their pre-migraine calibration).

Steve


Steven D. Rauch, MD
Director, MEEI Balance Center
Professor, Otology & Laryngology
Harvard Medical School
Mass. Eye & Ear Infirmary

[size=150]Timothy C. Hain, MD[/size]

A big thanks to Dr Timothy Hain (Professor of Neurology, Otolaryngology and Physical Therapy, Northwestern University Medical School) from Chicago Dizziness and Hearing, USA, who has also done us a great favour by contributing to this project by answering our Top 12 Questions on VM.


[size=130]The Questions:[/size]

  1. Have you seen long-term MAV cases who when finally treated with a migraine preventative for a lengthy period of time, go on to be VM-free minus that med? In other words does VM ever just permanently burn out with the aid of medication and remain so after removing the medication?

— Begin quote from ____

Migraine is one of the few things that gets better with age, and because of this, it usually gets less intense in both sexes. In women, migraine has two peaks – one around the age of 35, and a second at menopause. Because of the age dependence of migraine, driven by hormones, migraine typically gets better in women after the age of 55.

— End quote

  1. It appears that many people who come down with vestibular neuritis (VN) or labyrinthitis frequently go on to develop VM (reported many times on the forum). Do you think VN or labs precipitates VM and, if so, how?

— Begin quote from ____

Migraine is very common – and I have always assumed that such associations are chance. I have occasionally entertained the idea that migraine can cause a syndrome resembling VN. There is considerable overlap between migraine and Meniere’s disease.

— End quote

  1. Is a person with VM who has previous inner ear damage or disease (VN, labyrinthitis, etc.) less likely to recover more quickly and more fully than those who do not? Likewise, are males or females more likely to have a favourable prognosis (i.e. permanent remission) perhaps because of fundamental differences in hormone levels?

— Begin quote from ____

Persons with migraine are “wired” differently. Light, sound, smell, motion, medications – are all more bothersome for them. Persons with migraine are more likely to “feel” small differences in vestibular function than persons without migraine.

— End quote

  1. Why can VM initially be intermittent at the onset (brief episodes with long symptom-free periods), and then be followed by constant intractable symptoms that can be continuous for years if left untreated?

— Begin quote from ____

Certainly. There is a parallel between headache starting intermittently and later becoming constant (daily headache).

— End quote

  1. Are flu-like symptoms, fatigue, and aches and pains all part of a common set of symptoms associated with VM?

— Begin quote from ____

These symptoms can accompany migraine, with or without vertigo. Persons with migraine feel things more strongly.

— End quote

  1. Do you believe that bruxism (night clenching) plays any role in causing, promoting, or reinforcing migraine via stimulation of the trigeminal nerve?

— Begin quote from ____

No.

— End quote

  1. Is irritable bowel syndrome (IBS) common among your VM patients? Any idea what the link is with migraine and IBS?

— Begin quote from ____

IBS is certainly common in patients with vertigo of any cause. I don’t know if there is a causal link or not.

— End quote

  1. What are your thoughts on the underlying deficit producing the symptoms of migraine? Do you agree with current thinking that it may be the result of various channelopathies brought about by genetic errors? If so, do you think associated disorders such as IBS, CFS-ME are also a result of the dysfunction brought about by these errors?

— Begin quote from ____

I think that Migraine and Meniere’s disease overlap greatly. I suspect (and this is really just speculation) that there is an underlying disorder of the calcium channel. I don’t hold any opinion about IBS. I also think that CFS shows a close resemblance to the allodynia of migraine. I also tend to attribute extreme medication sensitivity to migraine.

— End quote

  1. Which medications do you personally favour for VM? It appears that other professionals in the field all seem to have differing opinions from Effexor to Topamax to the older tricyclic antidepressants (some neurologists describe TCAs as “messy agents”).

— Begin quote from ____

My main three agents are Effexor, Topamax and Verapamil [followed by Propranolol and Nortriptyline]. My current favourite is low dose Effexor. I will occasionally go to TCAs, beta blockers, and combinations of several agents (I like Effexor and Propranolol, for example).

— End quote

  1. Anecdotally, all of the SSRIs appear to work very well for VM but not migraine per se according to the science literature. Do you promote SSRIs more frequently for people with vestibular migraine? Have you personally noticed their efficacy in VM patients?

— Begin quote from ____

I don’t generally use SSRIs for migraine, because I am aware of the literature. I haven’t tested them out in VM patients.

— End quote

  1. What medications would you suggest to someone who only has very occasional headaches but has all of the other typical VM symptoms on a daily basis that vary in intensity for no apparent reason: dysequilibrium, visual disturbances, light sensitivity, brain fog, aura, fatigue?

— Begin quote from ____

I favour Effexor for this picture.

— End quote

  1. Do you find that drug monotherapy is usually enough for treating VM in your practice or does it usually require multi-pharmacy to eliminate all of the symptoms?

— Begin quote from ____

I find that a single drug works about 80% of the time.

— End quote


Timothy C. Hain, MD
Professor of Neurology, Otolaryngology and Physical Therapy
Northwestern University Medical School
645 N. Michigan, Suite 410, Chicago IL 60611

Lisa (MAVLisa) asked the following question:

— Begin quote from ____

“I just do not understand - I’ve been suffering from terrible dysequilibrium (floor moves when I walk) for 2 years now. This symptom (my worst one by far) NEVER goes away!! … however, my headaches are always fluctuating … I have gone through months without hardly any head pain. Last month, I woke up MANY mornings with an aura followed by a migraine … then this month, no auras, just head pain everyday at 3 PM and for the rest of the day … why doesn’t [the dizziness] ever go away?”

— End quote

[size=150]Steven D. Rauch, MD[/size]

I am not sure that anyone really knows the answer to your question, but here is the way I think about the issue of chronic dizziness symptoms in migraineurs:

The vestibular system is your “navigational system” – it tells you where you are in space, it gives you reflexive control of eye movements to keep your gaze stable when your head is moving (e.g. reading a street sign as you drive on a bumpy road, and it gives you information to make controlled motor movements of posture and gait. In order to do this, the vestibular system receives information from the five inner ear balance organs on each side (3 semicircualr canals plus 2 otolith organs), from vision, and from somatosensory sources, especially proprioception (position sense) in the muscles and joints.

During normal vestibular system development in infancy and early childhood, the brain is learning to integrate the inputs from these three sources – ears, eyes, and muscles. For the rest of your life, the brain is constantly comparing these inputs to see if they agree. If you turn your head to the left, your inner reads “left turn,” your vision shows objects sliding across the retina to indicate “left turn,” and your neck muscles are contracting and relaxing to cause “left turn.” Disagreement among the three input channels causes big problems. For example, if you are below deck in a ship, the room around you looks stable but the ear is “reading” the rolling of the ship. This “sensory conflict” causes a feeling of seasickness. The remedy is to go up on deck so the inner ear sense of motion is in agreement with what you see – a rolling horizon and the ship bobs in the water. If a person suffers damage or injury to the inner ear or some other part of the vestibular system, the primary aspect of their recovery is the gradual “recalibration” of the three inputs to bring them back into agreement. This typically takes anywhere from 2 weeks to 2 years, and in some patients, is never completely accomplished. It is analogous to learning a second language – young people do this easier than old people, people who are motivated do better, people who practice do better, and we are all “wired” differently – some are good at learning a new language (or recalibrating their balance) and some are not.

So what does all this vestibular physiology have to do with symptoms in migraine? We now understand that migraine is a disorder of brain chemistry that results in a global disturbance of sensory signal processing – many sensory experiences may be distorted and/or intensified – bright light, visual flow, loud sounds, strong smells, tactile stimuli, and motion, to name a few. Since so many sensory phenomena are distorted, the carefully calibrated integration of the three vestibular inputs is wrecked. Even worse, the calibration is constantly varying as the migraineur’s triggers wax and wane. As a result, the patient feels off balance and seasick for weeks and months (and sometimes longer). To use the language-learning analogy again: this would be like moving to a different country every day – you are never in one place long enough to learn the new language.

Maybe not the most scientific of explanations, but I hope this is helpful.

Steve


Steven D. Rauch, MD
Professor, Otology & Laryngology
Harvard Medical School
Mass. Eye & Ear Infirmary

[size=150]David Buchholz, MD[/size]

David Buchholz, an associate professor at Johns Hopkins University, thinks that patients have the power to avoid migraine through diet, sleep and the occasional Advil. Here, he answers questions about different types of migraine, and what he thinks is the best route for treatment. While he does not address MAV per se, this question and answer session is still relevant for any migraineur (they were published first on NPR).

Q: How much can barometric pressure contribute to migraines?

— Begin quote from ____

Barometric pressure changes – especially drops – are indeed migraine triggers. Examples include approaching storms, air travel and high altitude. Barometric pressure and other aspects of the weather (temperature extremes, humidity) are among the relatively unavoidable triggers for migraine. Stress and hormones trigger migraines, too. But that doesn’t mean you suffer each and every time you’re exposed to every one of these influences. In your brain is a control center for migraine that receives input from the many triggers contributing to headaches. These triggers stack up, and the height of that stack reflects not only your level of recent exposure to weather changes, stress and hormones, but also a multitude of other, more readily avoidable triggers – such as a variety of common dietary items, certain medications, and sleep deprivation.

If this total trigger level rises above your personal limit of tolerance – your individual migraine threshold – migraine is set into motion, generating painful swelling and inflammation of blood vessels somewhere around your head, face and/or neck, to some degree. The degree of headache (or facial pressure and congestion, or neck stiffness) depends on how high above your threshold your trigger level has climbed. In other words, most headaches are forms of migraine, including those labeled “sinus” and “tension.” And all forms of migraine can be controlled, by keeping your trigger level below your threshold.

— End quote

Q: Both my mother and older sister suffer from frequent migraines, and my younger sister has had migraines, but infrequently. I can remember having one migraine – several years ago after strenuous exercise. What hereditary factors explain why I have not yet had the migraine trouble that my sisters and mother have?

— Begin quote from ____

Everyone’s migraine threshold is largely hereditary, but as in your case, that doesn’t always breed perfectly true. If you come from a headache-prone family, you’re more likely to have a low migraine-threshold, which is easily crossed, making you more vulnerable to headaches. Whereas lucky people with high thresholds are relatively resistant and have headaches only once in a blue moon. Aside from some degree of genetic variability even within families, differences in headache activity among kin also relate to varying trigger loads based on differences in diet, medications (such as hormonal contraception or replacement therapy, and certain antidepressants and anti-reflux drugs), and sleep and exercise habits.

Also, many people – perhaps including your mother and older sister – unknowingly aggravate their natural headache tendencies by taking certain headache medications that may seem to help short-term but make your next headache more likely to occur. These drugs gradually depress your migraine threshold, making it easier to cross and thereby leading to rebound: a vicious cycle of worsening headache frequency and severity, and escalating drug dependence (plus decreasing response to the drug).

— End quote

Q: I have seen two separate neurologists, both well-respected in the San Francisco Bay area and nationally, and received two conflicting views on my migraines. Both said I had migraines with aura, but one claimed that the food I ate and my lifestyle, i.e., exercise, could trigger the migraines. The other said it was purely hereditary and that I could not affect it with diet or lifestyle. Do you believe that all migraines are affected by nutrition?

— Begin quote from ____

I think the second neurologist has it half-right: What’s (largely) hereditary is your migraine threshold. But in addition to having the power to avoid depressing your threshold (by avoiding rebound), you can also keep your trigger level down – below your threshold – and thereby control your headache tendency, through diet, sleep and exercise.

Dietary triggers are especially important for three reasons. First, they are both prevalent and potent, and collectively make up a major component of your total migraine trigger load. Second, on your own you aren’t likely to recognize most of these food items (for good reasons, such as the potential delay of up to a day or two in their impact, and the constantly fluctuating level of other triggers at the time of dietary intake). Third, you can – for the most part – choose what not to eat and drink, and thus avoid these influential triggers.

Getting enough sleep (eight hours on a regular basis) is something else you can largely control. And cardiovascular exercise – 30 minutes or more, at least three to four days a week – both helps as a stress reliever (thereby reducing that component of your trigger load) and stimulates production of brain endorphins, chemicals that naturally inhibit migraine so as to raise your threshold to where it’s not as readily crossed.

— End quote

Q: How long might it take to see results from a diet change? I’d like to commit to an amount of time so that I’ll be able to stick with it.

— Begin quote from ____

You can usually determine your response to the diet within the first two months. It works best if you follow the diet as strictly as possible in the beginning. After you’ve then maintained satisfactory headache control for at least four months, you can carefully experiment with reintroducing potential triggers and see what happens. Caffeine withdrawal may result in a temporary rise in headaches for up to a few weeks at the beginning, and once eliminated, caffeine should not be reintroduced. You must also eliminate rebound-causing drugs – or at least limit their use to more than two days total per month – in order to respond to preventive treatment. If after two months of dietary modification (plus adequate sleep and exercise) you still aren’t satisfied with headache control, you should maintain those steps but would then be a candidate for the addition of medication taken on a daily basis in order to prevent migraine.

— End quote

[size=150]Robert W Baloh, MD[/size]

I’ve transcribed a discussion with Robert Baloh MD PhD, 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 and the drug that saved my ass. 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]

– the 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.

I asked the following question after awalkerphoenix’s belief that his problems were mainly due to VN and not migraine:

— Begin quote from ____

“Is it possible or have you seen a caloric test result come back showing strong unilateral hypofunction in a migraineur? One might assume that a 70 or 80% deficit would indicate that some sort of vestibular damage had occurred previously, possibly through a viral attack for example. In your opinion can a person with only migrainous vertigo show such a deficit solely as a result of the migraine condition?”

— End quote

[size=150]Steven D. Rauch, MD[/size]

In most all other vestibulopathies, both central and peripheral, test abnormalities tend to “cluster”, showing all peripheral dysfunction or all central. Migraine does not cluster, but shows “scattered” abnormalities that have some elements of peripheral dysfunction and some elements of central dysfunction. Cases of scattered abnormalities are almost diagnostic of migraine – or at least highly suggestive. There also seems to be greatly increased test-retest variation rather than consistent findings. Finally, migraineurs are highly intolerant of vestibular function testing — they are MUCH more likely to have vomiting during the testing and MUCH more likely to have lingering dizziness and vertigo for days (or weeks) after testing than any other dizzy patients.

As for your specific patient, remember that in caloric testing we use Jongkees formula* to calculate a % asymmetry. We always report the result as “weakness” on the side with less activity. However, there are occasional cases, e.g. very shortly after a Meniere attack or in a migraineur, when one side may actually be “HYPERactive”. This would get reported as weakness on one side when it is actually hyperactivity on the other side.

That said, there is certainly mounting evidence that migraineurs can gradually develop peripheral injury – sensorineural hearing loss (SNHL) and/or caloric weakness. This is probably due to abnormal activity/signalling in the trigeminovascular innervation of the inner ear. Robert Baloh (otoneurologist at UCLA) has reported that 20% of patients with MAV develop SNHL. Patients with both MAV and SNHL can be indistinguishable from Meniere’s disease. They can be considered “migrainous Meniere’s.”

*Jongkees formula:

(right warm + right cool) - (left warm + left cool)
____________________________________________ X 100 = % asymmetry
(right warm + right cool) + (left warm + left cool)

I hope that helps.

Steve

Some recent correspondence triggered by a recent thread on the forum. Very interesting stuff. Again my thanks to Prof Rauch for always assisting us in his own time. 8)

— Begin quote from ____

Question: Vestibular damage appears to have been reported in the literature as a possible outcome of migraine disease. I was wondering if this is something you’ve actually come across in your practice in migraine patients?

— End quote

[size=150]Steven D. Rauch, MD[/size]

Prof Steve Rauch: This is actually very common. Remember that approx 20-30% of patients with migraine headache exhibit VM. About 20% of VM patients develop hearing loss on one side – evidence of “endorgan damage” in the cochlea. Those patients with VM who mimic Meniere’s syndrome — episodic vertigo lasting 20 min-24 hrs plus hearing loss — nearly all gradually develop evidence of endorgan damage (a.k.a. “vestibular hypofunction”) in the form of reduced caloric response and/or reduced VOR gain and increased phase lead on rotation testing.

Some patients with VM who do not look like Meniere’s disease can also develop peripheral hypofunction, too. The challenge in studying and/or assessing this issue is that VM patients tend to have very labile vestibular function test results. In other vestibulopathies, we see test abnormalities on a vestibular test battery that “cluster” — peripheral disorders, such as Meniere’s, labyrinthitis, and vestibular neuritis, show peripheral hypofunction (reduced caloric response, direction changing paroxysmal positional nystagmus, reduced VOR gain and increased phase leads on rotation testing) and central nervous system disorders, such as stroke, cerebellar degeneration, and TBI, show central dysfunction (direction-fixed position-insensitive spnotaneous nystagmus, vertical nystagmus, poor optokinetic nystagmus, impaired fixation suppression, etc…).

The hallmark of VM is that the test abnormalities do not cluster well (i.e. there is a mix of peripheral and central findings) and there is poor test-retest stability (i.e. every time you repeat the test battery, you get different results). Since vestibular function testing makes migraineurs very ill, it is nearly impossible to test them at all, let alone repeatedly. However, in those with a lot of vertigo, repeat testing often shows a more and more persistent and worsening unilateral peripheral hypofunction in the symptomatic ear (same as we see in Meniere’s disease).

Steve

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If one has basically tried multiple drugs from each class (sometimes stopping before a long-term effort at a higher dose due to debilitating side effects and with most of those med trials being done before all the lifestyle changes), would you recommend one tries Botox? If I recall, Hain recommends this after trying combinations of meds, but given what Baloh said this can be difficult with side-effects (I imagine especially if the patient is already taking three other pharmaceuticals).

What a wealth of information! Thought I would bump this for others who may have missed it. So many questions that we all have are answered above.

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Reading this was the highlight of my day! Thank you for bumping it.

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Great read! So informative and so relatable!!! :+1:t3::+1:t3:

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Yes. Extremely good articles in this thread. I remember first reading it in 2016 - having to split it into small chunks because I had terrible visual vertigo at the time - think I’ve only re-read it in its entirety since. It is the best set of indications of neurologists’ thoughts on MAV ever put into print I imagine. US experts are far freer with their knowledge than the UK ones from my experience. That’s for sure. Perhaps it would a good idea if it could be made more prominent permanently on the site so newcomers couldn’t fail to miss it. James? @turnitaround would that be possible. Helen

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Judging by anecdotal observation, can’t argue with that - most users of mvertigo appear to be female

This makes sense to some degree, but I believe you can look at it enough way - if you inner condition is severe enough you will develop migraine as an additional symptom (along with a variety of neurological fallout).

This is an interesting statement. And I disagree with it to an extent.

I am an example of a person who didn’t suffer from migraines who got MAV so bad that VRT made my condition worse.

However, I have still largely recovered (though I’m certain I still have an inner ear imbalance due to persistent tinnitus which I can fluctuate at will by increasing my ICP) and no longer need migraine prophylaxis

Therefore my case disproves this generalisation: “migraineurs are the only patients whose symptoms get WORSE when they attempt vestibular rehabilitation physical therapy.”

I’m not a life migraineur but my symptoms worsened with VRT.

I’m aware it says ‘tends’ - but personal experience would lead me to disagree with this to an extent - despite not having fully recovered and still having imbalance, I gave up medication because they weren’t doing anything for imbalance (so what’s the point of the side effects?). I continued to improve regardless, so the migraine meds were definitely NOT the only thing that were helping me recover - I suspect there’s a natural process going on too for some sufferers at least.

I’m really not a fan of using the word ‘migraine’ for all of this - I suspect the reality is more complex.

I’m fully aware I’m using the example of one, but if someone makes a generalisation, it only takes one case to cast doubt on the assertion.

What might explain it is what I wrote on a recent thread, that some people have brain chemistry that makes them more susceptible to noise in their vestibular system. But to get MAV then I propose you need sufficient noise in your vestibular system to breach your allostatic load tolerance threshold of your brain.

So, imho, unhealthy noise in your vestibular system is also suggested, otherwise you would only be a person suffering with regular migraine, not the additional vestibular and auditory symptoms, no?

Or perhaps there is one final possibility, that an unstable brain causes peripheral upset and there is a big class of patient who arrive at MAV via a vicious cycle of migraine and peripheral deterioration. But if that was the case, why don’t all migraineurs go on to develop vestibular issues and MAV?

So in conclusion, isn’t this a systemic issue? You can’t just focus on the brain and within the MAV population there are subsets with different drivers.

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You must admit though that the various consultants posts will give plausible answers to many questions newcomers to MAV are burning to ask. Overall it’s brilliant background info. I was always taught to understand any subject you really needed to ‘read around it’ and I think this is a good starting place.

Read ‘MAV’ for ‘migraine’. Great description.

We see all of these on here regularly.

I could go on and on picking out bits but overall I think it’s great. I particularly like Dr Raunch’s section. Thanks @Naejohn for bumping it. I’d kinda forgotten its existence. Helen

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100% agree. Hence my term “Vestibular noise” (that in a more tolerant individual is processed without a hitch).

Yes, you have to wonder if hormones are the thing which are the differentiating factor and drive the difference in population between men and women.

And hormones aren’t just a brain thing?

The physiology of ‘flushes’ catches my attention - I wonder if that can have an impact on the inner ear? Directly or indirectly? Perhaps via an impact to the ET which then alters how the Inner Ear is regulated by some innate dependency.

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Have linked this Topic in the Welcome Post.

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Hi everyone!
It was such an awesome read for me, I just figured out how to use the flag feature on the forum so I’m happy to be able to refer to it as often as I wish. I love the different perspectives of the Drs answers and the commonalities they also share. To James’s point (in layman’s terms since I’m not the expert he is), I think this condition has so many variables and each based on individual experience which is another reason we are all here supporting each other.
This condition is unlike many / most others that have clearly defined cause / affect, that we know of anyway.
It covers so many questions I have for my Dr but never have the chance to ask. Just such an excellent reference!

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Ha, I’m just an expert in healthy scepticism with a few ideas :wink:

Hah! You use words I have to google for the definition, which make it seem to me that your an expert :joy: I’m a simpleton :joy:

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