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

Best wishes,

Scott and Terry


Special thanks to Adam, Hannah, Kelley, and Howie from mvertigo.org and Imnoscientist and Funshine from menieres.org for their helpful feedback.

 

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

In looking back, I have learned that my migraine issues began in my pre-teen years and all through my life I had symptoms that were MAV and I blamed it on, or it was misdiagnosed, as something else, whether meniere's or allergies or sinus problems or eye strain.  I had a vertigo attack when I was 12. I didn't have another until in my 40's.  But I had so many classic MAV symptoms all through my life, I just didn't know it. I was a chronic headache personality, not the stereotypical migraine headaches but everyday pressure and painful areas around my skull. In my mid 20's, MAV was ramping up at a fast terrible pace, I was on a certain path to vertigo.  I couldn't drive because I was so dizzy nearly every day for about 6 months.  It was my doctor that said to abstain from dairy foods for a month and see what happens, although he never said the words "migraine", "vestibular", or "meniere's", even though I had terrible tinnitus along with the debilitating dizziness and fluctuating muffled hearing.  Lucky for me the dairy-free life did the trick back then. Even the headaches went away. I was good for another 15 years as long as I stayed away from dairy products and all its separate components.  Then it started up again, with a vengeance not seen before.  And here I am.

Eight years ago, for a couple of years, I had nearly constant dizziness, and when I wasn't specifically dizzy it didn't take much to push me over the edge.  Two years into that the tinnitus started.  Intermittently at first, but by the 3rd month it was constant.  Ear fullness and muffled hearing began to increase in my right ear, sensitivity to noise was horrible and I wore an earplug nearly 24/7.  And by the 8th month I had gradually become stone deaf in my right ear, no more fluctuations.  I was devastated and had some symptoms in my left ear but nothing significant at that time. Also, by the 6th month into the tinnitus, I had my first vertigo attack since I was 12.  It lasted about an hour and it was terrible and exhausted me, but not as bad as what was to come.  Within another month or so the 2nd one hit and this one held nothing back.  It_was_hell.  More would follow.

I had to try something, with much of it being familiar with what I went through in my 20's, I experimented with common food offenders thinking it was something else I was eating.  Nothing definite was identified at that time.  But we had been suspicious that I was being adversely affected by things I was breathing in and we made huge changes at home to lessen those offenders or even eliminate them, I began the game of dodging what would assail me when I stepped out into the smelly and  particulate world, and I began to feel better, the vertigo attacks stopped their frequency, but I was never really well, just barely managing, always so easily derailed with the smallest of triggers. One of the really awesome things that improved with the changes I made was that my hearing slowly returned with little permanent damage.  The tinnitus faded and the fullness went away.  But I was still afraid because this beast could come on so easily and for what seemed like no reason at all. I always kept my promethazine with me every where I went and used it a few times each month to ward off what felt like an impending vertigo attack.

At first I believed I had meniere's, for 3 years I was certain of it, but as time went on and I learned more about meniere's, that definition just didn't fit. I was dizzy so much, I felt like I was walking on couch cushions most of the time, and that is not meniere's. Something felt wrong with a meniere's diagnosis. But I had ignored posts about migraine. I had been fed myths all my life, like the rest of us, as to what migraine was suppose to be, and I didn't fit that narrow, stereotypical definition that is perpetuated by those that don't understand, and sadly, many in the medical profession don't understand it either.  So I remained uneducated about MAV because I had ruled it out before even investigating it.
 
I had improved only to a point of barely managing my symptoms. What I was eating and becoming increasingly intolerant of began to take it's toll for the next 3 years after that, until it could no longer go unaddressed and I was thrown into a relapse for months that added another symptom I had not experienced up to that point, and that was the MAV defining one...along with the typical ones of constant dizziness which at times was debilitating, tinnitus and ear fullness spiked, I then began to experience extreme sensitivity to light during surges in symptoms along with extreme sensitivity to noise more than ever before. The answer became clear with the help of migrainers here on the forum. It was not meniere's, it was migraine.  Hindsight again proved to be clear as day.

The following 3-4 months afterwards I charted and targeted and experimented with foods and food additives, immersing myself into Dr. Buchholz's book.  I started really getting well, and I lost my fear because what I really had was no longer unknown.  Since then not only have I identified my food triggers but have found so many wonderful substitutes that I don't feel deprived at all, even processed foods, and I know how to read a label in about 5 seconds flat. For 3 years I adhered to a low sodium diet and it turns out that sodium was never an issue after all.  Food additives are my biggest food offenders and yet it is the inhaled offenders that will hit me the hardest and be most devastating. 

I know what I have and I understand it. It's a constant struggle, I have to think about it every day, make choices every day, and I feel it often but it is rarely more than just annoying, but I know what it is and what it will do and how to manage it. I have not had a vertigo attack in a long time. I don't use medications. I am not afraid anymore. 

 

On 30 August 2003 I woke up in a heavy fog – I felt drugged. I thought nothing of it though thinking I had just had a very bad night’s sleep. Two weeks earlier and on two occasions, I’d had strange feelings as I tried to fall asleep; I felt drunk when I was lying in bed, drifting across the mattress. By morning I had been OK. But not this time. As I walked to the bus stop I felt more and more light headed but continued on my way to the university to get some work done on my thesis. I bought a cappuccino as I always had but I felt very different after drinking this particular one. I had never felt so anxious in my life; my hands were shaking. At the university, I finally sat down in front of my Mac trying to ignore the sensations but within 15 minutes the text suddenly began to move on the screen. I was “losing my stomach” as if on a rollercoaster, the feeling rushing through me relentlessly. I began to feel waves of panic.

I immediately left work and met my girlfriend on the bus home. In the bus my arms felt like 50 kg weights. I couldn’t speak to her I was feeling so paralysed with fear. I didn’t know it then but this was to be my first panic attack of hundreds. Walking back home from the bus stop I noticed I was feeling very dizzy and disorientated in a way I had never experienced before. I immediately went to bed thinking it was a strange flu or cold but lying down brought no comfort and instead made everything worse. I began drifting on the mattress again, my heart was pounding very hard, and adrenalin shots were surging through me every few minutes. I was out of my mind and certain I was either dying (a stroke?) or had been drugged.

I threw myself in a taxi and arrived at the hospital ER in a complete state. A nurse put electrodes on my chest and hooked me up to an ECG. Nothing wrong. They told me I’d had a panic attack and nothing more, to go home and relax and that I would be fine. For the next 2 days my heart rate was very high, I was aware of my pulse and I was dizzy, anxious, and miserable. I went to work on the Monday and began filming a lecture I was paid to record. Half way through it dizziness increased, I broke out into a sweat, and a massive sense of doom descended. I rushed myself down to my local doctor in a panic claiming I was poisoned again. They squeezed me in without an appointment. After running through some basic tests and hearing about my weekend, the doctor said the words “labyrinthitis”. I had no idea what that even meant.

Thus began the event that changed my life overnight – my “Big Bang”. The doctor warned me things would get worse and to prepare. She was right. The following 6 weeks was a living hell with another trip to the ER, endless panic attacks, burning ears, tinnitus, listlessness, and increasing dizziness as though I had just fallen off a high speed merry-go-round. A visit to an otolaryngologist 2 months later and I was told it was vestibular neuritis (VN), to go on a low salt diet for 6 weeks and all would resolve. He told me to stop being so anxious! By early December I caught a regular cold and my symptoms sky-rocketed. I was completely spent now from months of anxiety and dizziness and the pendulum began to swing the other way. Depression crashed in hard. I had no idea it was possible for a person to feel that bad and so finally, I threw in the towel. I could no longer battle this thing alone and though I had been adamant that I would never take an antidepressant – that I would fight this hell or high water because of the perceived stigma I had attached to those drugs – I gave in.

A disastrous week on Zoloft first and then a quick swap to Cipramil (Celexa) at 10 mg and it was the first time I had felt remotely like my old self in 5 months. A dose increase to 15 mg and 9 months after the initial attack I was almost my old self but with occasional “blips” of what I thought was decompensation. Still, I was not quite the same. I began researching VN and realised it could be 2 years to fully recover and so I was in for the long haul. I tried to stop Cipramil after one year of feeling quite OK. I had gained a lot of weight, lost my mojo, and wanted to get off the meds. Within 5 weeks the monster was back full force. I was convinced it was still decompensation causing the symptoms.

I tell this story because for 3 years I thought I had a badly compensated version of VN. Each attack was decompensation in my mind. However, I had seen threads on another forum and read about something else called migraine associated vertigo or MAV but clearly THAT was not me. Afterall, I never got severe headaches nor did anyone in my family that I knew of. MAV was some weird freak illness that only strange middle-aged women got. So from then on I skipped any thread I saw about migraine or MAV. I knew better and I knew what was wrong with me and wasn’t wasting my time on anything else. Even the suggestion of migraine made me roll my eyes. It wasn’t until I had made some close connections with two very smart people on that forum that I was finally forced to look at MAV. I was in denial but the more I read, the more I learned, and as I looked back over my life, it became obvious and very clear that I was a migraineur. I was always carsick as a child, had strange stomach aches, and the odd “pulled” sore neck in high school that would come and go within 2 or 3 days. Sometimes I just felt sleepy and “dopey” in the eyes for no reason. Occasionally I had episodes of tingling and complete numbness in my arms and legs sitting in the back seat of a car as a teenager. What on earth was that? I just didn’t know. As I got older, more and longer episodes of debilitating neck pain and head fog occurred, some lasting 8 months. Exam time always brought terrible neck pain, headaches and head fog. I thought it was computer overuse and so I spent a fortune on physiotherapy. Everything I thought migraine was, was wrong. I now understood why Cipramil worked so well (Robert Baloh’s first choice for MAV); I had lucked out having this as the second drug I was given. A complete fluke – and it got me through my degree.

Fast forward to the present and I am working full time and lead a mostly normal life. I have not achieved the level of migraine control I want since Cipramil; I continue to trial different migraine medications (presently on low dose Paxil) to supplement lifestyle modifications. Following the three parts to lifestyle modification as outlined in the Survival Guide as best I can have been the single most important method for me in reining this in. Valium has also proved to be my life saver when an unexpected attack strikes at work, at a social event, or on a jet. It stops the dizziness and physiological anxiety attacks generate.

I guess the main point I want to make here, is that many people never imagine in their wildest dreams that they could be dealing with a chronic migraine-based problem, that migraine can produce all of these symptoms. Afterall, isn’t migraine just a bad headache? One recent study showed how strongly people will deny being a migraineur if they don’t fit the classic “severe headache” profile and thus may spend years suffering for no reason, all because of a misdiagnosis or their own denial. I was one of them. Furthermore, because of the confusion, some doctors seem to be very quick in labelling chronically dizzy patients with Meneire’s disease. Please consider migraine if you identify with the Survival Guide and have any doubt about either Meniere’s disease or VN.

S 8)

 

Burd and Scott,

Thank you thank you thank you for these amazing posts. What a Herculean effort! There is so much great information in there and I really hope others take the time to read it. All these conditions - MM, migraine, MdDs are so confusing and frustrating, so often misdiagnosed and also co-morbid. The horrid truth is you can have more than one condition and so often they "feed" on each other, provoking further problems.

I would also like to stress that readers really consider the migraine possibility. Although I already knew I was a migraineur it took a decade of miserable, lengthy periods of suffering to figure out that my migraines had morphed into new and ghastly territory. Some of that misdiagnosis was the doctors' "fault" (I hesitate to blame when these conditions mimic so many other things, which need to be ruled out) but some of it was mine. I thought I knew what my migraines were and it took me a long time to learn and accept that they had and continue to change over time.

The good news is that, as Scott and Burd have pointed out, there is a lot that can be done to control migraine. Even if you have more than one condition, getting the migraine under control will be a huge help.

Thanks again Scott and Burd - a really amazing effort.

 

Thank you Scott and Terry for sharing your stories. When given a diagnosis of vestibular migraine on top of menieres I was doubtful. I have had a history since childhood of migraine headaches and about 8 years ago developed a chronic, daily headache which the neurologist diganosed as transformed migraine. When the latest round of meniere's attacks begain in August of 2009 I had severe migraines along with the attacks. As the attacks continued I was continually dizzy, pressure and shrill tinnitus in both ears, thus the vestibular migraine diagnosis. I have read the books, tried the diet (although not faithfully). Your stories are encouraging - today I will make an effort to do the diet in order to regain some control.

 

Scott and Terry, thanks so much for pulling all this information together.

You have both described my life since Feb. 2009. I am a poster child for this disease and yet have never suffered a migraine headache. As you pointed out, those of us that were never migraineurs (to our knowledge) think of migraine as a debilitating headache when in reality it is so much more and does not always include that headache.

It gives me hope that with the right doctor and the right meds in conjunction with the lifestyle modifications and trigger avoidance that there is still hope for a better life for me.

I was lucky enough to get a diagnosis of Vestibular Migraine from my ENT early on, which was somewhat unbelievable to me at the time, but unfortunately have not had any medical intervention at this point due to the fact that the Neurologist that I saw didn't believe it was Vestibular Migraine because I do not suffer from migraine headache. I haven't given up though and will be seeing a Neurotologist next month to confirm my diagnosis and start on the path of management.

If it wasn't for the support and information on this forum and mvertigo.org I think I would still be scared, confused and would have probably fallen into depression because of the impact this disease has on ones life. Because my symptoms fluctuate in which ones are the most bothersome on any given day and due to the fact that as time goes on new symptoms develop I find it helpful and calming to check these forums and be assured that these symptoms are indeed normal with MAV. It is amazing how many symptoms can develop from this disease when left unmanaged and sometimes I think that the list of symptoms is overwhelming not only to us but to our doctors who are not experienced with this disease.

So grateful to you both and to the others here who offer that support and knowledge.

 

Thank you so much for this. To everyone suffering, I want you to know that I am a success story. When I finally realised I had MAV, I made all the lifestyle changes, the diet changes, plus added nortrip, and I am now at 85-90% again. When I am stressed, or when I stray off the diet, I feel it. When my horomones are bonkers, I feel it. I wil never be able to ride an amusement park ride again, or go rock climbing , but those things pale in comparison with having my life back. It was an 11 year journey, but I am so happy that I can live life again.

 

Those who are newly diagnosed with MAV may be surprised to find that they may be suffering from additional medical issues that in themselves can be the cause of migraines. These issues include (but are not limited to) Autoimmune Thyroid Disease, Diabetes, Hypoglycemia, Celiac Disease, Candida, and various vitamin deficiencies, including D and B12.

These issues often fail to be correctly diagnosed, as the ENTs, neurologists and neurotologists usually assume that, by the time a patient reaches them, those issues have been already ruled out. But family doctors, general practitioners, and primary care practitioners are usually of the (incorrect) opinion that those medical conditions always present with other, more characteristic symptoms--but often, they simply don't.

Vitamin B12 Deficiency, also called Pernicious Anemia, is often missed as a cause of migraine, as most doctors are unaware that the common symptoms include dizziness, tinnitus, hearing loss, and migraine headaches. Moreover, the current standards of diagnosis use a lower threshold of 200 pg per mL, which doesn't correspond with research that indicates neurological problems with serum B12 under 500 pg per mL. Pernicious Anemia specialists agree that treatment is warranted in patients with serum B12 under 500 pg per mL.

Folic acid deficiency can also cause low serum B12, and intrinsic factor deficiency can prevent the body from utilizing even adequate amounts of serum B12--resulting in pernicious anemia.

According to www.pernicious-anaemia-society.org, the most common cause of B12 deficiency in otherwise-healthy adults is long-term use of acid blockers, such as Prilosec, which inhibits absorption of B12. But suddenly stopping Prilosec can cause a "rebound" reaction, in which far more severe reflux symptoms result from the sudden cessation of the acid blocker. This not listed in the package insert for the drug, nor do most doctors seem to be aware of this.

There have been several studies linking noise-induced hearing loss and tinnitus with B12 deficiency.

Vitamin D Deficiency has recently been linked with many autoimmune disorders, including thyroid disease and Celiac Disease, and is linked with migraines as well: www.medscape.com/viewarticle/577151
Extensive information on D deficiency can be found at www.vitamindcouncil.org

Thyroid Disease is often missed by general practitioners, who are usually unaware that the clinical standards for TSH changed in 2005. Many women are told that their weight gain, dry skin, exhaustion, dizziness,and headaches (including migraines) are to be expected with age, when they are really suffering from an easily identifiable correctible medical condition.

Diabetes is now being caught earlier and in more people than before; however, doctors often miss hypoglycemia, which is less obvious with symptoms. Both are recognized triggers of migraines.

Celiac Disease, which is often associated with diabetes, autoimmune thyroid disease, rheumatoid arthritis, and a host of other autoimmune disorders, is often overlooked by doctors, especially the subset of patients who present with ONLY migraine. Until very recently, Celiac Disease was considered to be extremely rare. Doctors still mistakenly assume that all patients with celiac have severe intestinal problems and are vastly underweight, when in fact, nearly half are overweight. While the majority of celiac patients do have intestinal problems, many either do not, or lack symptoms even when intestinal damage is visible upon endoscopy. To complicate matters, many present with symptoms well beyond the scope of intestinal disorders, such as joint pain, GERD/reflux, eczema, panic attacks, Meniere's Disease symptoms--and migraine. Some with Celiac Disease present ONLY with migraine, illustrating why it takes an average of 11 years to be correctly diagnosed with Celiac Disease in the US. www.csaceliacs.org and www.celiac.com are good sources of information.

For those whose doctors are not aware of the studies linking gluten with migraines, the following links may be helpful:
http://www.ncbi.nlm.nih.gov/pubmed/12650798
http://www.ncbi.nlm.nih.gov/pubmed/16178961
http://www.nature.com/ajg/journal/v98/n3/pubmed/ajg2003147a.html

Gluten-induced migraine appears in children as well:
http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2982.2008.01630.x/full
http://pediatrics.aappublications.org/cgi/content/full/114/5/1371

 

Thank you Terry(burd) and Scott for such a great post. Really enjoy reading this post.

 

Thank you for posting this! I like Spark am a success story. As a kid I had migraines but not until I was 16 did I begin having motion/ dizziness issues. I was told "it's anxiety, go on antidepressants and see a psychatrist", then told "it's MM have the shunt" when I had the shunt it didn't work. Then I was put on a beta blocker and effexor I felt like I was dying. Topamax made me so pissed off that I ended up breaking a $400 cellular phone. When I was diagnosed with MAV and put on the right meds for it (Verapamil/ Gabapentin) I began to see the light. My life is back, I can do things that I was never able to do before. I do still get migraines occassionally (last night was hell), but the vertigo is gone. I hope people read this and take it to heart.

 

Thanks so much to Scott and Terry and for putting this information together and sharing your stories.I'm sure this will help many people.

I hope that after a time it will be moved to the database.

Edit, Nov. 2
(This I posted on page 10 but it might be nice to have it on page 1)

Stumbled on to this informative article.I started with drop attacks and have heard that mav can cause them but have never seen it officially in print until now.

''Overlapping symptoms of migraine and Ménière's disease include vertigo, hearing loss, tinnitus, aural fullness, and drop attacks; symptoms exclusive to migraine are photophobia, phonophobia, aura, and migraine headache. If patients have any of the migraine symptoms and are dizzy, think migrainous vertigo, Dr. Battista told the audience.''

http://www.enttoday.org/details/article/526341/MigraineAssociated_Dizziness_Is_Elusive_to_Diagnose.html

Edit Nov. 5
This was on page 9, suggested to move it to page 1.

Just found this really good study from Italy.It's from Jan. 2010.

''In the early stages, differential diagnosis between Menière’s disease and migraine-associated vertigo is often very
difficult; previous investigations focused on the possibility that subjects with migraine may experience all symptoms of Menière’s disease,
including sensorineural fluctuating hearing loss. In conclusion, a trial with prophylactic drug treatment for migraine might be suggested in
patients with clear symptoms of migraine and recurrent cochleovestibular disorders.''

www.actaitalica.it/issues/2010/4-10/09%20Teggi.pdf

 

Thanks to you both! I began having migraines (headaches with aura, photo sensitivity...) about 5 years before the mm hit me. I am going to do some follow up and try some of the possible treatments.
Did I miss the "loss of hearing" part of the article that is common in mm? Since the mm is active I couldn't fully concentrate on the entire article (But I will).

 

While the focus of migraine triggers are mostly attributed to what we eat, which is so important to investigate, please don't overlook the significance of inhaled offenders. This is not just my story but for many others that are sensitive to chemicals, fumes and fragrances of all types whether in personal care products or household products, dust, dustmites, smoke from any source, animal dander and fur, pollens, mold, the outgassing of new products is significant such as plastics, electronics, newly treated leather, carpets and construction and formaldehydes, the list is as endless as there are fumes and particles to breathe in.

Rev yes migraine can cause hearing loss. This was my case but was verified in Dr. Buchholz's book.

Taximom, gluten doesn't affect me. Triggers are so very much an individual thing so it's important for people to keep it all in mind as they search for their answers.

I want to thank everyone that has helped me over the years to identify and cope with what I have. And I want to thank Scott for inviting me to be a part of this effort. We are hoping so much that Ray will pin it for us because so many that come to this forum are affected by MAV usually after being diagnosed with meniere's and sadly many don't even know it or understand it could be their story too. Its sad to think that getting well could very well be in their power if they only understood what they are dealing with.

Thank you all for sharing your experiences. That is what makes this forum successful.

 

I hope this thread makes it to the database section.

 

Burd, it may not affect you, but it is a known cause of migraine (please see the studies I linked above) and should be included in any discussion of managing migraine.

I'm not saying that everyone who has migraine needs to eliminate gluten in order to manage their symptoms, any more than anyone who has migraine should be on one specific medication. But if you are talking about migraine management, and you don't list it, you do a grave disservice to those who might be helped by such information. How can they "keep it all in mind" if you don't even mention it?

 

Hi Taximom,

With all due respect, I did consider you when I wrote the section on lifestyle mods. In there it states:

Migraineurs should work with their other medical professionals if necessary to get control of other health problems such as allergies, food intolerance ...

I had a look at your refs. There is an association although not particularly strong:

Four of 90 (4.4%; 95% CI = 1.2-11.0) migraine patients were found to have CD.

The other was a single case study and said "Migraine may on occasion be a sentinel symptom of mild celiac disease."

The Gastroenterology link didn't work.

The other two deal with pediatric cases.

I think that point two in lifestyle mods covers this fairly.

Thanks for the post and links.

S

 

Hi Taximom,

Not fighting - just wanting to clarify your post. Nothing "causes" migraine - it's a genetic condition. There are a number of things however which may provoke or trigger a migraine attack or migraine activity. Is that what you mean about gluten? I think it is as you then said gluten sensitive people would need to eliminate it to help manage their migraine symptoms.

 

Seconded!

 

What I mean is that migraine is a common symptom of celiac disease/gluten intolerance, and that it usually completely disappears in that subset of the population once gluten is eliminated from the diet.

I am not saying that this cures or even helps all those with migraine. But for those people whose migraines are triggered by gluten, it does seem to be a cure, as most of them don't seem to have other triggers. In addition to anecdotal evidence on ALL of the celiac forums, one of the links I included above showed that the gluten-free diet either drastically eliminated or completely eliminated reported migraines.

Note that people who did not test positive for celiac were also not placed on a gluten-free diet. It is also a safe assumption that those who WERE on a gluten-free diet may not have always been able to know what is really gluten-free; anyone with celiac will tell you that even after a year or two, things that were thought to have been gf actually weren't. Sometimes even things labeled as gluten-free are not (such as Rice Dream rice milk, for example, which contains undisclosed barley). And many of us have been given erroneous info by nutritionists (for example, I was told by one that Rice Krispies and Corn Flakes are gf, which is not true).

And don't you mean that the predisposition to migraine is a genetic condition? People aren't born with non-stop migraines as a genetic condition.

I think it may even be a bit of a jump to assume that the predisposition to have migraines is in itself a genetic condition. If the offending triggers were never encountered, some people would never have migraines--and for a great many people, the offending triggers seem to be things that our bodies probably weren't meant to encounter in the first place, like aspartame, mold, caffeine, etc. I'm not fighting here, either-- I just think that we are doing a disservice to those who might be able to make their migraines disappear for ever if we don't tell them about those who HAVE.

I've had two students with formerly severe, chronic migraines who are now migraine-free with no medication. One has celiac; the other had an odd combo of hypoglycemia/vitamin D deficiency. One has been migraine-free for nearly 2 years; the other, for nearly 6 months.

I don't know enough about the hypoG/D deficiency situation to comment (though maybe JOH does), but apparently her doctors had never seen anything like it before. However, the student with celiac was told by her GI doc that in his practice, patients with migraines consistently reported that their migraines disappeared after starting the gf diet. HER NEUROLOGIST HAD NEVER HEARD OF THIS. Neither had her orthopedist, nor her rheumatologist, both of whom diagnosed her with juvenile rheumatoid arthritis (which she did not have).

Don't you see something very disturbing here?

I'm not trying to diagnose the migraine world with celiac disease here. But this is SUCH a common story--I know--personally know, not just internet know--SO many people with similar celiac stories.

Studio dismissed the study I linked that showed 4.4% of migraineurs testing positive for celiac--in spite of the fact that that is 10 times the rate in the general population. He dismissed the links dealing with pediatric cases. Umm, how many of us had migraines when we were children?? Quite a few, I'll bet. I know I did.

How many people are going to think that gluten is something they should consider as a trigger, if migraine is their only symptom, and those posting about, teaching, and treating migraines don't even mention the link?