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.