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Vicki

Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's

  1. Vicki

    Vicki Guest

    Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's
    Hi All,

    Terry (Burd) and I have been shooting some PMs back and forth and thought the forum needed a resource to outline how to identify, "survive" and handle chronic migrainous vertigo, otherwise known as vestibular migraine or migraine associated vertigo (MAV). We both agree that there are likely a large number of people on this forum or those just arriving that more often than not have MAV and not Meniere's disease (MM), and others that clearly do have MM and have migraine complicating matters further.

    Migraine is NOT just a bad headache but “a global disturbance of sensory signal processing“. In other words, sensory information – sensations – are distorted and/or intensified. Moreover, some people have migraines that NEVER involve headaches and present as only non-pain symptoms. If we examine the statistics, migraine affects approximately 12% of the population (16% in women and 8% in men) while MM affects about 0.2% (or about 2 in every 1,000 people). MM is therefore a relatively rare condition. When you consider that the second most common symptom of migraine after headache is dizziness, it stands to reason that migraine should seriously be considered in cases of chronic or sporadic unexplained dizziness and vertigo, especially where there is no unilateral (one-sided) progressive hearing loss in the lower ranges.

    As most of you who have searched for answers will know, there is a huge amount of misinformation and myth about migraine on the internet, from regular doctors, and even some specialists. Worse still, some end up going from doctor to doctor for years never knowing that migraine is the root cause of their dizziness or that it is greatly exacerbating their Meniere's Disease.

    There is currently no cure for migraine, which is a genetic disorder, and so there is a huge range of medications and treatments (sometimes expensive, misleading and completely ineffective) on the market to choose from. Knowing where to begin in tackling this can seem like climbing a mountain at first glance. Who do you believe and what drug or treatment do you try? The great news is that we do know through evidence-based medicine supported by people's personal experiences, that there are some very good ways to manage this condition that work. In almost all cases, a person with migraine can rein it in and lead a normal life once they know what they're dealing with and how to handle it. It took both Terry and I about 3 years to finally work out that migraine was the root problem we were dealing with. We know the frustration, fear, and suffering that it brings in not knowing what is going on and feel very strongly about making this information available to other people in hopes that they will avoid the long and winding road in understanding what has happened. In short, we hope this will be a "MAV Survival Guide" that people can use to navigate their way out of the migraine abyss.

    Presentation

    A person with MAV may present in several ways. Someone who has migraine with aura (visual symptoms, numbness or tingling, motor dysfunction) will typically report distinct vertigo attacks, usually lasting minutes to hours associated with nausea that can occur before, during, or after the onset of dizziness. They describe feeling very tired and are very sensitive to light (photophobia). Sensitivity to sound, tinnitus and some hearing impairment may occur. This hearing problem can suggest MM but in the case of MAV it typically occurs bilaterally (in both ears). Tinnitus is often high-pitched or a roaring within the head whereas in classic MM, it is usually low-pitched and in one ear only. Towards the end of these symptoms, the patient will likely develop a headache or a feeling of pressure in the head. After sleeping several hours, they awaken symptom free. This form of attack is difficult to distinguish from MM; indeed, large studies have shown that 25% to 35% of migraineurs experience episodes of dizziness or vertigo, many of which are indistinguishable from Meniere’s attacks.

    A more common type of MAV and difficult to diagnose is when there are less distinct episodes of vertigo or there is no headache at all. Approximately 50% of vertigo attacks related to migraine occur in headache-free periods. Furthermore, migraine dizziness is often felt as chronic dysequilibrium (the feeling you have walking down the street after too many glasses of wine), lightheadedness, a swimming drunk feeling, floating, or a feeling of being disconnected from the world (also called derealisation). Often a “brain fog” descends and thought processes become more difficult and slower. It may become harder to concentrate and absorb information or follow a conversation. Short term memory may suffer as you struggle to remember words or a person’s name. Feelings of dizziness and vertigo can worsen when you change your posture; however, it differs markedly from BPPV. Nystagmus (eyes pulsing in a particular direction) may also be present with a postural change with MAV.

    Triggers

    People with MAV will often note attacks that are set off by visual stimulation (visual vertigo) or motion. They have difficulties in stores with long aisles and hate fluorescent, flickering or bright lights. Stripes and bold shimmering patterns can also be problematic. For some people, walking outside on a bright sunny day will cause dizziness and a feeling of surrealism requiring dark sunglasses or special contact lenses to stop the effect. Watching a train pass, watching your fingers typing on a keyboard, scrolling movie credits or watching a video game on a computer may provoke dizziness. Even crowds can be a problem. Some are temperature sensitive such that a shower or a cold wind on the head may precipitate a headache or dizziness. Repetitive tasks such as long hours on a computer, or even gardening may set off a person with MAV. Around 50% of migraineurs have a history of feeling car sick, became easily sea-sick, or they avoided amusement park rides as children. These problems often lessened or went away when they became an adult but reappeared with the onset of MAV.

    Other triggers include hormonal changes, stress, inconsistent sleep routine (too much, too little, or interrupted), weather changes, certain smells, loud repetitive noises, exercise and travel. Fragrances and certain smells that can trigger attacks include: perfumes, scented personal care items, laundry detergent smells, scented cleaners, out gassing of new materials (plastics, building materials, car interiors) and smoke of any kind. For those with allergies, dust, dust mite, animal dander or mould may also be a trigger. Attacks tend to cluster around holidays due to the stress (both good and bad stress) of new activities, travel itself (jet lag and sitting in a pressurised jet cabin) and dietary changes -- most notably from foods like red wine, chocolate, aged cheeses, and smoked meats. Attacks often occur after periods of intense stress (letdown migraine) such as moving house, starting a new job, relationship break down or from dealing with the hospitalisation of a family member. Extended travel by car, especially as a passenger – or for some as the driver – is very stimulating and can be more problematic than flying in a jet. Boat trips and cruises or just playing in waves at the beach can also set off attacks. A migraineur’s list of triggers may be quite long. Some of them, such as lack of sleep, may always lead to a migraine for you while for others, it may take a combination of several triggers to make you feel ill.

    Patients with MAV will typically show depressed mood, heightened anxiety, or mood instability. Many of these people will have seen a psychiatrist, psychologist, or therapist and will often describe themselves as having an "anxious" personality. Some may have a history of depression and/or panic disorder. It's not uncommon for a patient to be told by a doctor, "you're just anxious" on examination and that their dizziness is due solely to anxiety.

    Finally, it can often be found that the first attack is the most severe and of greater intensity and duration than those that follow. Sometimes the initial attack is consistent with vestibular neuritis (VN) followed by a long compensation period. Under normal circumstances an acute attack of VN will last anywhere from 2 days to 6 weeks followed by a period of chronic compensation. Vestibular rehabilitation therapy (VRT) may be necessary and the patient will usually recover completely. In a susceptible migraineur, however, an attack of VN or other viral illnesses such as Bell’s Palsy can be the “Big Bang” that initiates the chronic migrainous vertigo state with no end in sight. The patient may think they are still suffering from VN long after it has resolved, but it is migraine that perpetuates their dizziness and keeps them feeling ill. MAV patients are also highly susceptible to BPPV (loose ear crystals moving around in the inner ear canals) occurring at a rate three times greater than any other idiopathic (unknown) cause. A BPPV attack may either provoke the onset of chronic migrainous vertigo or occur sometime after the first migraine episode.

    Chronic Migraine

    It is important to note that many do not realise that migraine can be a chronic condition – that is, there are symptoms that come and go on a continuous basis throughout the weeks and months with a constant background of low-level vestibular and other neurological symptoms. Sometimes they spike and you will have horrendous symptoms for days or weeks and other times you may be much more dizzy than usual for days and then have it tone down again – “back to baseline” as we say. Others are constantly dizzy and feel a persistent rocking sensation or a feeling as though the room is always tilting. The ground may feel like sponge and a person will feel as though they are “bouncing” as they walk. Other common chronic symptoms include neck and shoulder pain, back pain, sinus and face pain, chronic fatigue and symptoms that are misdiagnosed as fibromyalgia. Some experience the headaches of migraine as "tension-type" headaches (TTH) as defined by the IHS. According to some neurologists, TTH should never cause debilitating pain or light sensitivity and those that do are in fact experiencing migraine. Others will feel flu-like symptoms for days but it is not the flu. Chronic migraine also typically causes sleep disruption with such a person waking many times during the night. They may wake feeling unrested, anxious, and run down.

    Treatment

    The good news is that migraine can be reined in and a high percentage of people can stop the symptoms and resume a normal life. So what do you do if these horrible symptoms have descended into your life? Identifying and avoiding triggers is probably the single most powerful thing you can do to alleviate the symptoms of migraine and is half the battle. Remember, a "migraine brain" is super high maintenance and hypersensitive – like a diva or a thoroughbred race horse. It wants everything to stay the same and wants to be treated like royalty. Throw anything new at it or upset the balance with a trigger and it can/will react angrily and a migraineur will pay the price. In this order, and according to scientific evidence and from those who have gained control of this illness, these are the steps you should follow:

    A. Lifestyle Modifications

    The migraine lifestyle and diet includes three parts. By following these steps, around 40% of migraineurs achieve excellent results and symptoms resolve.

    (1) Regular schedule – every day should look like every other day. You should eat regular healthy meals and never skip one. Make sure you keep a regular sleeping pattern EVERY day, going to bed at the exact same time every night and allowing for about 8–9 hours of sleep. You should get regular daily exercise even if it’s just a walk to the end of the block and back again. Ideally you should aim for 30 minutes of aerobic exercise. Because more vigorous or intense exercise can itself be a trigger, you may need to start off very slowly increasing it incrementally over time until it is a daily activity and does not trigger attacks. Drink about 2–3 litres (about 8–12 cups) of water daily if you can; a migraine brain must stay well-hydrated.

    (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, food intolerance, thyroid, blood pressure, blood glucose, and hormone problems, or any other obvious vitamin/ mineral deficiencies. Colds, the flu, and other viral infections are notorious for triggering nasty attacks and so good personal hygiene is key to reducing risk of infection (e.g. wash your hands often and avoid touching your eyes, nose, or mouth during flu season).

    (3) A migraine diet – there are many foods that are potential migraine triggers. The simple way to remember a migraine diet is to eat ONLY fresh foods. When in the supermarket it usually means not buying anything in the aisles but shopping around the perimeter. You can eat fruits (though citrus and bananas might be a trigger for some), vegetables or meats. Stick to unprocessed low glycemic index carbohydrates. It's best to cook your own food and prepare all foods fresh when you want them. If you do this, you are on the migraine diet. The list of “Thou Shalt Nots” is long and not great. Here is a sample of the MAIN triggers:

    • nothing aged, cured, pickled, or fermented (cheese, beer, wine, alcohol, vinegar, soy sauce, yoghurt, sour cream)
    • no caffeine (coffee, tea, chocolate, colas)
    • no artificial sweeteners/sugar substitutes (especially aspartame)
    • no nitrates (deli meats – proscutto, pepperoni, salami, etc)
    • no sulfates (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). In Australia, MSG is labelled as number 621 on the ingredients
    list. For more information on MSG labelling, see this document:
    http://www.truthinlabeling.org/hiddensources_printable.pdf

    In order to determine if migraine is the problem, a person must be willing and determined to make a concerted effort to identify triggers. Note that triggers do not cause migraine, but ignite it, like putting a match to dry kindling and so identifying them is critical. For example, keeping a diary of daily symptoms and recording all possible triggers for a period of time (2–3 months) is a great way to find patterns and isolate them. Others may need to use an elimination diet to isolate food triggers. Whatever the method, some may only do so half-heartedly with no definitive results to work with and will thus rule out migraine prematurely. Accurate and useful results require putting in some time and effort.

    IMPORTANT

    Dr Nicholas Silver in the UK is the neurologist migraineurs see when they have failed to gain migraine control under the supervision of previous neurologists. He is extremely systematic and methodical in helping people gain control. He says the main reasons that people fail – even when they are on a migraine preventive drug – is because patients are still using caffeine in some form (coffee, tea, green tea, chocolate, colas) or they are using painkillers. Some nasal decongestants can act similarly to perpetuate the condition. A chronic migraineur should NEVER use any painkillers – not ibuprofen, paracetamol, Tylenol, or aspirin and definitely not the more heavy-duty ones such as the opiates unless it is an emergency but no more than four times per year. Even one cup of caffeinated tea per week can be enough to perpetuate chronic migraine, so NO CAFFEINE. If you're using painkillers now, the best way to get off is to go “cold turkey”. Headaches may get worse over the first 2 weeks and should then ease off. Use other methods to work with headaches such as cold packs etc.

    If the migraine lifestyle above is followed and you can pinpoint your triggers and develop a firm foundation and stick with it, then 40% will see their symptoms resolve and you may only deal with the odd flare-up here and there. For the other 60%, a preventative migraine medication is needed.

    B. Migraine medications and evidence-based treatments

    There are currently several FDA (or equivalent)-approved evidence-based medications and nearly 100 off-label medications commonly used for migraine prevention. Abortive medications (e.g. triptans) are not known to be of much use to someone who suffers with MAV and may actually perpetuate the problem and so a preventative medication is used. According to Drs Nicholas Silver (who prefers medications that encourage a proper sleep cycle) and Steve Rauch, migraine medications should be started at very low doses and increased slowly over weeks or months until the headache and dizziness goes or the recommended tolerated dose is reached. One should not be put off by the label “antidepressant” or “anticonvulsant”. The dose required may be far below what someone with clinical depression or epilepsy would need. Once stable, you remain on the medication for one year and then it may be possible to come off the drug over another 4-month reduction period at which point a migraineur can remain in remission without medication but still following a migraine lifestyle. Others may need to stay on their preventive for many years or for life. Note that migraine medications are NOT a substitute for the above lifestyle modifications but are a supplement to them. When you find an effective preventive medication, however, you will likely be much less vulnerable or susceptible to triggers, including dietary triggers.

    Some of the more common classes of medications and treatments are as follows:

    • Beta blockers – propranolol, atenolol, metoprolol
    • Calcium channel blockers – Verapamil, Flunarizine
    • Tricyclic antidepressants – amitriptyline, nortriptyline (Rauch's favourite), Prothiaden (Halmagyi and Silver's favourite)
    • SSRI/ SNRIs – citalopram (Baloh's favourite), Effexor (Hain's favourite), paroxetine, Zoloft, Cymbalta
    • Benzodiazepines – most find these very effective, particularly low doses of valium which has both anti-anxiety and
    anticonvulsant properties. Dr Timothy Hain recommends low-dose clonazepam which avoids dependence.
    • Anticonvulsants – Topamax, Neurontin, Lyrica, Depakote
    • Natural remedies – magnesium, vitamin B2 (riboflavin), Coenzyme Q10 (These three natural remedies for migraine headache all
    have shown promising results as effective natural headache remedies in controlled trials)
    • Physiotherapy/ neck massage – stiff and knotted neck muscles can act as a migraine trigger (Note: paradoxically, neck massage
    or body massage can also trigger an attack)

    C. Alternative and other treatments

    Note that these treatments have very little or no evidence for efficacy beyond personal anecdotes and/or a possible placebo effect. However, they may give some temporary relief or even long-lasting relief.

    • Acupuncture
    • Chiropractic (beware of the dangers involved with neck adjustments)
    • Craniosacral therapy
    • Meditation and other relaxation techniques
    • Biofeedback
    • Trigger point therapy
    • Low carbohydrate diet (not to be confused with a low glycemic index diet)

    Recommended reading materials:

    “The Migraine Brain” by Dr Carolyn Bernstein
    “Heal Your Headache” by Dr David Buccholtz
     
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  2. AnneT

    AnneT Active Member

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    Thanks for this. I'm down to 1/2 cup coffee twice a day, gradually reducing.
     
  3. burd

    burd Member

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    Thanks Vicki for posting this info that Scott and I wished to share over here. So many are misdiagnosed with meniere's when they have mav, or vestibular migraine, instead. The approach to treatments are so very different and so many are treated for the wrong thing. What is most unfortunate is that some of those treatments for meniere's causes permanent damage. What a shame if someone is damaged for a disease they don't have.

    The previous info posted under this thread in the archives has so much excellent information by many who have experienced this. I wish you great success with your efforts.
     
  4. BumbleBea

    BumbleBea Fallen Angel

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    This is making so much sense for me!
     
  5. Vicki

    Vicki Guest

    I'm glad Bea :)
     
  6. Sharon406

    Sharon406 Member

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    Very interesting. I can't recall ever having migraines but I certainly can relate to much of this article. Since I have not been successful with any other treatments this is certainly worth exploring. I already avoid most of the trigger foods other than nuts and yogurt so I will eliminate those one at a time. Also my ENT has me on a low dose aspirin and I will question that also. Thanks for providing this info Vicki!
     
  7. Vicki

    Vicki Guest

    you're welcome Sharon, I do not get headaches or migraines either but once my MM was under control, my MAV symptoms were very obvious to me.
    Wishing you the best! Keep us posted.
     
  8. danni1979

    danni1979 New Member

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    Thankyou thankyou THANKYOU for this!! Ive been having a horrible time for the last few weeks and was diagnosed with this today!! Xx
     
  9. Vicki

    Vicki Guest

    Danni you have Teri Burd and Scott to thank for this post, I just requested Ray to move it to these new forums. In the process it makes it look like it is my thread but its is not.
     
  10. 15 year vet

    15 year vet New Member

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    I agree. I think many many have MAV and it is misdiagnosed because standard form is to go to an ENT who has no clue and really has no clue into inner ear issues like Meniere's as well. As I say in my thread/post, if I had gotten the proper dx from an otoneurogist or neurologist maybe I could have saved my hearing and hours of vertigo and horrendous throwing up and ER visits and dr visits and thousands of dollars and a sword hanging over my head for years during remissions.

    http://menieres.org/talk/index.php?topic=2194.0
     
  11. AnneT

    AnneT Active Member

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    Im pretty sure I have mm and MAV so am trying to treat both. I’m down to green tea only. I think it’s time to get brave and switch to no caffeine, and try to ditch the Advil and Tylenol. Maybe I need to be less afraid of my low dose clonazepam.
     
  12. Coach Betz

    Coach Betz Member

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    That was a most excellent post. I have just been booted from the ENT to a Neurologist. (I have reached the end of his treatment regimen.) I'm confident that Meniere's was a correct diagnosis. Hearing loss, ENG testing, among others, all indicated MM. Now my symptoms are very much MAV indicative. It seems as though few people get the single serve Meniere's. So many of us get the "combo platter".
    Because of the "dizziness" I have been medically disqualified to perform my job. My Neurologist started me on Nortriptyline a few weeks ago. It may be having a positive effect, but it is a disqualifying medication for my profession. After some exhaustive cross referencing, I think I may have found a suitable replacement. Off to the doctor Monday to see what they think. If she finds it acceptable, I just may be able to return to work. It will be a long process to get approved (up to a year), but I'll be able to get back to doing what I love and happen to be quite good at.
    Good luck to all here who are suffering. Don't give up. There is an answer out there for you.
    Mike
    Not a Doctor
     
  13. Robert Wilson

    Robert Wilson Member

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    This is fascinating to me. My triggers match up very well with the migraine trigger list. And, frankly, I haven't noticed that salt makes much difference. But processed foods or MSG will trigger me fast.

    An ENT diagnosed me with Meniere's, but a DPT with a vestibular specialty said he thinks it's more likely migraines. I understand an overlap is possible as well.

    I've only had one bad attack in 60 days, and that morning I did loosen up and drink a little coffee. Always tough to trace an attack to 1 thing, but who knows.

    I added magnesium and COQ10 (anti migraines) to the JOH regimen. Been avoiding triggers. Did vestibular therapy to re-train my brain. Something is working, but I'm not confident enough in what to know whether to go right or left - so I'm continuing to try to treat it all.

    I think I should probably see a neurologist instead of just the ENT. That may be next on my list.
     
  14. Robert Wilson

    Robert Wilson Member

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    Update here. I got an appointment with a neurologist who has a vestibular specialty (these guys are hard to find - I know of one in Dallas and one in Pittsburgh). He said I do not have Ménières (so he and ENT disagree). He’s confident I have vestibular migraines. He says my partial improvement is because of the supplements I’m taking, and I’m avoiding triggers. But I still have plenty of symptoms - just less. He’s putting me on topiramate. He thinks he can fix this, so of course I hope he’s correct.
     
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  15. mariofrommty

    mariofrommty Member

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    Thank you Vicki for putting all this information.
    im really confussed, about.. everything lol.
    idk if i have menieres or mav
    because i have had fullness, and i have a bilateral hearing loss in the low frecuencies
    and tinnitus in my left ear, (right ear sometimes too)

    But, back in 2015 i had a migraine for a week, with aura
    and i just as my tinnitus is constant... my visual snow or symptoms are constant.
    and i get hedaches very often.
    this week ive been kinda dizzy, and with vertigo...but my vertigo is related to my head posture.

    what you guys think?
     
  16. June-

    June- Well-Known Member

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    Cervical vertigo?
     
  17. Robert Wilson

    Robert Wilson Member

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    Following up on this again.

    I've been on topiramate (topomax) for a couple of months. It has greatly reduced my symptoms. It has not been without side effects, but the side effects seem to be decreasing, and it has been completely worth it to avoid the rock-your-world vertigo attacks I was having and have my active life 95% back. I still have to be somewhat careful and manage my life from a migraine (and I still think meniere's) perspective, but the improvement has been major.

    I'm willing to bet a similar approach would help many on this website, so I wanted to follow up and mention this.
     
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  18. Onedayatatime

    Onedayatatime Active Member

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    That sounds positive Robert. My ENT started treating me for the same thing after my VNG test came back normal. I'm now on the headache diet a little over a week, reduced salt again and am taking Verapamil. I just had my dose doubled, so like you the side affects have there own challenges. If it gets rid of the vertigo, it's worth it. BOL to you!
     

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