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

Scott and Burd,

Thanks again for all your hard work on putting this migraine information together. I think it's timely to acknowledge the huge amount of time and effort you've both put in and that you have done so purely to try and inform and help others. For free. I'm completely satisfied that neither of you have any financial ties to any pharmaceutical companies, nor are the monies rolling in for your work on this forum or mvertigo.org. To suggest they do is insulting and without basis.

Anyone is free to post whatever they want in response to Scott and Burd's summary, however, S&B are under no obligation to make any additions or subtractions to their post to accommodate each and any other views. Posters are free as the wind to start their own threads, or run their own forums if they are not satisfied that their personal views/experiences have been incorporated to their satisfaction.

The information that S&B has posted reflects their own experiences but is also well grounded in evidence. Where individuals have experiences which are outside the mainstream they should of course feel free to post about it but should naturally expect a level of discussion to ensue. That discussion does not discount the individual's experiences it simply holds it up to scrutiny.

Thanks again to Scott and Burd. I'm sure a lot of people will find this thread very useful.

 

If they only read the first few pages...
The bickering will probably provoke a migraine

It's really a shame that this thread has taken such a bad turn.Taximom let it go,start your own thread on migraine.It's really ridiculous,the things you have said about Terry;Scott and Burd have bent over backwards to accommodate your demands to be included in ''their'' thread.Your information is in the beginning,that's enough.

Thanks Burd for all you have done at m.org and all of the people you have helped in your time here,Thank you Scott for helping to compile this information.

 

Thanks INS for making this important point. Burd and I have recounted our stories where Burd was able to stop this with lifestyle intervention alone –– she falls into the 40% category –– and I with the addition of a migraine medication (the 60% group). I remain reasonably well-controlled but need that lifestyle intervention as well which is critical for me as it is for Burd otherwise the meds would be useless. There is nothing in the original document that is not supported by the science literature or expert opinion. It's a collection and summary from a wide range of articles, books, chapters and personal input from Rauch, Hain, and Silver to name a few.

S

 

Wow- has this thread taken a different turn since I first read it a few days ago. I read through the excellent article that Scott and Terry had put together but wasn't feeling well and didn't post. I'm sorry I didn't then.

Maybe I can get the post back on track as it was originally intended. I just wanted to say that I wanted to thank both Scott and Terry for the excellent information and all the time and effort that you both have put into this forum.

I suffer from both MM and MAV so I fall in a different category altogether. But I was diagnosed with MAV-vestibular migraines first and was treated successfully with a change in lifestyle with diet,exercise,finding my triggers,reducing stress and keeping a strict routine. After several years, medication had to be added and then it was again controlled successfully for several yrs. Then, MM symptoms were added and my life was severely altered and I could no longer control my MAV with as much success. That was a game-changer and belongs on a different post.

I just want to make sure that all of the information that they have worked so hard to present to the newbies and others suffering with MAV doesn't get lost due to all this arguing back and forth. Because they are spot on with all of their info. I have both of the books they are recommending and they are very helpful to read as well.

Thanks again Scott and Terry!

Let's get this thread back on track please

 

Practically all of my symptoms could be explained by MAV as I haven't had any persistent or progressive hearing loss nor any frank, MM-like vertigo. And the way I've been feeling today feels more like a continuous migraine than anything that could be due to Meniere's (okay, it could also be the flu).

But one symptom of mine doesn't seem to gibe with migraine -- the Tullio's. Mine is mild but I'm 100% convinced it's a form of Tullio's. My own voice and rooms full of talking people are my usual triggers. I mentioned it in another thread but I guess I ought to ask the experts here: is there any way Tullio's can be caused by migraine?

 

Fizzixgal, I don't know much at all about Tullio's except that someone with it experiences serious noise sensitivity problems, someone with migraine can also become hypersensitive to noise too, but how can one know if Tullio's can come from migraine is an interesting question, or is it a matter of misidentifying one for the other. Since there are no definitive tests to diagnose either one and it's a pattern of observation, that makes it even more difficult. I have experienced noise that affected me badly but I can't say if the noise caused my dizziness and discomfort or if it was a symptom along with the dizziness and discomfort. Migraine fluctuates so reactions to noises and sensitivity to sound would too. Does Tullio's fluctuate or is it constant?

 

For those who want to try the medication route when lifestlye intervention fails, this might be worth a look. It's an algorithm for treatment. It looks a little bit conservative and doesn't mention Effexor and a few others but at least gives some idea of the current recommendations.

Medications for Migraine Prophylaxis

Full article here from American Family Physician: http://www.aafp.org/afp/2006/0101/p72.html

 

!!!

I have read this initial post again and more and more this sounds like me thanks for the info. Guess we'll see what neuro says in December and what he can give me that won't make me sicker.
I've been waking up with pressure in my head every day lately and feeling exhausted no matter how much sleep and shaky - and of course anxiety because so much to do and wondering what i can actually get done. Weekends aren't quite so bad but still.

i have started driving again a little but haven't made it all the way to work yet - still depending on others and i hate it i woke up thinking about that this morning.

Had some cool dreams this morning and in those im always well - i wish i was in real life!

6 straight weeks of chronic stuff going on is really getting to me.

chris

 

Burd, you raise a good point. Namely, the fact that Tullio's is by definition a peripheral phenomenon. Either the saccule is hypersensitive to sound because of hydrops, or there is an abnormal window in a SCC that allows sound energy to be transmitted into the vestibular endorgans. Either way the problem is in the endorgan not the brain. But how can I tell that I am feeling effects that are happening directly on my vestibular system, vs. mediated by my brain? I really can't be sure of that and especially since I do not have spinning vertigo, there is nothing that really points to the endorgan.

Well, except that my hearing symptoms and sound sensitivity are definitely unilateral. Left ear only.

 

That is a tough one fizzixgal. The only thing I can think of is to try migraine identification to see if your symptoms are affected or eased. A process of elimination. If your Tullio's symptoms get better then that would point towards migraine. What is good is that other than some inconvenience and a lot of chart work and self denials for a spell, it can't hurt you. Migraine can affect one ear. I have never read a reason why unless it's genetic predisposition, a weakness in the ear or extra blood vessel activity on that side. I am thinking that, just as some get headaches from migraine on one side of their head, it is entirely possible that one ear could be affected for the same reason. It just makes sense. My right ear has always been the one affected, but occasionally I will get symptoms in the other but on the left side it is always fleeting. The right side always takes the hits.

 

I want to share some information from the book that turned my life around. I am shocked at the tremendous misinformation about what migraine is and what it can do, especially within the medical community. Had I known early on in my life I may never have had to go down the road that I did. I am grateful though to have learned but unfortunately, and sadly, many will not learn this from their doctors, even specialists, because they don't understand it either. What a shame and how many will suffer needlessly?

"Normally your vestibular system controls your balance by means of the fluid-filled semicircular canals in the inner ear. These peripheral sensors are connected by nerves to certain pathways and centers in the brain stem and elsewhere in the brain, and when vestibular function is disturbed by migraine, it may be felt as unsteadiness, loss of equilibrium (like just getting off a boat), being off-balance, veering, swaying, falling, rocking, vertigo (a spinning sensation) -or just vague, nonspecific dizziness, lightheadedness, or wooziness.

Symptoms of migraine, especially these vestibular symptoms, are sometimes trigger-specific. Just as sunlight glare or a flashbulb going off in your face may specifically provoke a classic visual aura of flashing lights, so may the vestibular stimulation of moving your head rapidly or into a certain position cause vestibular symptoms of migraine. It has long been recognized that car sickness and other motion-induced ills are commonly related to migraine and reflect the heightened vestibular sensitivity of certain individuals, courtesy of their relatively low migraine thresholds.

As with all other neurological symptoms of migraine, vestibular symptoms can be transient or persistent and can occur with or without headache or other accompanying discomfort. The site of migraine-related blood vessel constriction causing dizziness can be either in the inner ear or in the vestibular pathways and centers of the brain. The term "basilar migraine" is applied to intense episodes of migraine involving profound vertigo, imbalance, loss of consciousness and other symptoms arising from constriction of the basilar artery, which supplies the brain stem."

Heal Your Headache, by David Buchholz

 

Here is more revealing information as to the true nature of migraine. Not everyone will experience the same things. And even with one person the symptoms can vary according to triggers or threshold levels (explained in Dr. Buchholz's book) or overall health at the time of exposure to a trigger.

"Not only is the term "migraine" misleading when it's used to designate one specific type of headache, but even the term "headache" is inadequate to cover the full spectrum of discomfort generated by the migraine mechanism. Discomfort may be felt anywhere in or around the face or neck as well as the head. Words such as "ache" and "pain" may not even begin to capture the discomfort you feel as a result of migraine.

Instead, in or around your head you may experience pressure, fullness, tightness, heaviness, thickness, numbness or soreness, or you may have swelling, burning, buzzing, vibrating, boring, piercing, drawing, expanding, tingling, trickling, bubbling, crawling, shifting, or rushing sensations. These sensations may be aggravated by bending over, straining, sneezing, coughing or exertion, or if you shake or jar your head.

You may have feelings suggestive more of lack of clarity than discomfort, such as cloudiness, dullness, fogginess, or fuzzy-headedness. Discomfort may be excrutiating, trivial, or anything inbetween...The severe headaches conventionally labeled "migraines" occupy a relatively narrow band at the far end of the spectrum."

"Migraine can affect the inner ear so as to produce auditory symptoms, including tinnitus (ringing, buzzing or some other noise in the ear) and muffled hearing. Even sudden hearing loss can occur. Again, these auditory symptoms, as with all neurological symptoms of migraine, can be momentary or prolonged, and may occur alone or in concert with headache and other symptoms. Phonophobia, or sensitivity to loud noise, is another auditory symptom of migraine."

"Neurological symptoms of migraine, including visual disturbances, dizziness, and many more, form a broad spectrum...symptoms vary extensively in degree and duration. Minutes-long is typical, but they may last split seconds, hours, or even longer - or even be constant for months or years..."

"Migraine produces swelling of blood vessels in mucous membranes around your head and gives rise to congestion and discomfort that not only are misdiagnosed as sinus headache but also can affect the ears. The eustachian tubes, which connect the middle ear with the back of the nose, are lined with mucous membranes. If migraine causes blood vessels in these mucous membranes to swell, resulting in engorgement of the mucous membranes, the eustachian tubes can become blocked. The result is ear discomfort: fullness, stuffiness, pressure and pain."

"Vertigo is also positional in patients with vestibular dysfunction due to migraine. This may be another example of sensory input (in this case, information about your head position derived from the semicircular canals) feeding into the circuit of migraine as a trigger."

"Photophobia, or sensitivity to bright light, arises from inflammation of meningeal blood vessels. Visual stimuli such as sunlight glare, flourescent or flickering lights and ceiling fans may trigger migraine. Some people find they can't tolerate supermarket aisles or malls, watching television or reading."

 

Thank you so much Burd and Scott for putting this all together. Many times I feel like this freak where I used to be a "normal" person. It seemed like all of a sudden "what the hell happened?". I finally listened to the doctor's presentation which was very good, thank you. At first I was confused when he kept saying meegrane until I realized he was saying migraine. He was so down to earth and had a sense of humor, I really like that in a doctor, not stuffy at all. The head doctor at Jefferson Headache Center where I go, Dr. Silberstein, is funny like that and I really appreciate it. When he and his partner Dr. Young took a look at me in the hospital they said "You've got a neck problem". I said "How do you know?". They said "Head tilt". I have occitpital neuralgia.

But anyway I just want to say it was a very good talk and I appreciated both of you sharing your own experiences and how you came about discovering what works for you. I hope I get to the other side of this. I hope there is another side of this. Yesterday I went to one of my granddaughter's vollyball games and encountered every trigger except odors while there: bright lights, whistles blowing, screaming little girls and the sounds echoing around the gym, girls running all over the court. I just put my sunglasses on, kept eating ginger, and kept a smile (or grimace) tried to make it a smile, and kept thinking this is about my granddaughter and it would pass.

It's sad that this keeps us from missing out from enjoying life and the things we used to do and things we used to take for granted. I'll be going to the Phillies game tonight come hell or high water! Or maybe with the help of some Migranol if needed.

 

Just wanted to add...... about 3+ yrs. ago Burd talked about migraine on this site. A lot of what she said sounded like 'me'. I pm'ed her probably too many times.haha It was because of her, I sought out another Dr. to get a second opinion. Sure enough....I was diagnosed with MAV (along w. my MM). So......I read the book! I changed my diet! and My whole life changed. Infact, my husband and I decided to have another baby w. our new lease on life!!! I owe all of that mostly to Burd!My previous Doctor literally told me, "this is your life now, you need to find a way to deal w. it"! Thank you from the bottom of my heart for introducing me to MAV!
Unfortunately, some of my symptoms are back and Im trying to sort them out now but this site is amazing. Burd and Scott- thank you for all of the information. You are truly making a difference in our lives!
Melanie

 

MelB do you also take meds or strictly watch your diet and stuff? Just curious since i'm not sure what's going to happen to me once i go to neuro in Dec. so you found food triggers? that's what i'm trying to do

chris

 

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

 

Excellent find James. Thanks for posting as it again highlights how easily MM can be misdiagnosed by the unsuspecting doctor.

 

Thanks James, good article.

I think this is the first one I have read that talks so much about hearing in regards to MAV. Burd has been talking about the hearing aspects for a long time and that was the main difference between diagnosing MAV and MM so now we can't even totally rely on the loss of hearing to differentiate the two.

 

Some of the important points from this article (Acta Otorhinolaryngologica Italica, 2010) above to save reading through all of it:

• 1. MM is an inner ear disorder characterised by recurrent episodes of rotational vertigo, most typically associated with fluctuating progressive hearing loss, typically on low frequencies in early stages, fullness and tinnitus.
  
  2. There is a higher prevalence of migraine in MM patients, variously reported at between 43% and 56%, while in the normal population it is 10% (the latest figures are 12% as i note in the Survivla Guide)
  
  3. Epidemiology (the study of distribution and incidence) of both MM and MAV may underline a possible pathogenetic link between the two diseases.
  
  4. MAV is the main disorder capable of mimicking MM in its early stages. There is clinical evidence that migraine can damage the inner ear, causing permanent hearing loss or impairment of vestibular function. Some authors have hypothesised that MM may develop in an ear previously damaged by vasospasm induced by migrainous mechanisms.
  
  5. In one of the patients who responded to migraine meds, the following was reported: her audiometric threshold showed a right sided low frequency sensorineural hearing loss.
  
  6. In the other patient, the following was reported: she reported various episodes of rotational vertigo normally lasting for 2-3 hours with hearing loss on the left side. She reported increased hearing loss during vertigo. Audiometric examinations demonstrated a low frequency sensorineural hearing loss.
  
  7. The two patients fulfilled all criteria for definite MM. in both cases, preventive therapy of MM with betahistine 24 mg twice a day, salt restriction and increased water intake did not prevent vertigo attacks, which remained unchanged in frequency and duration in a 6-month follow-up. On the other hand, drug prophylaxis of migraine with Topamax 100 mg daily and aspirin 100 mg daily, produced a clear decrease in vertigo attacks, in both patients, in a 1-year follow-up.

Summary

Both MM and MAV diagnoses rely considerably on history and both disorders lack a definite diagnostic test.

Patients with MAV may experience all the symptoms of MM, including fluctuating sensorineural hearing loss, even though repeated MAV attacks very rarely produce a permanent hearing loss.

• The following practical criteria has been recommended in order to differentiate MM and MAV:
  
  1. MAV must be considered as part of the differential diagnosis.
  
  2. In the patient’s history, the report of only very short (seconds to less than 15 minutes) or prolonged (more than 24 hours) vertigo spells are more likely due to migraine rather than MM. Moreover, if the spontaneous spells of vertigo are associated with migraine features (phono- or photo-phobia), migraine is the probable source.
  
  3. In MAV, audiometric and vestibular anomalies are more typically mild in magnitude and stable over time rather than fluctuating.
  
  4. When symptoms coexist with migraine [headache], a trial with a migraine management regimen is suggested. MAV is, above all, a diagnosis of exclusion based on clinical history.

 

Thanks for that summary Scott.

I think this highlights the need to see a Neurotologist rather than an ENT or Neurologist to get a proper diagnosis as the ENT only deals with the Inner Ear not Migraine and the Neurologist deals with Migraine but not Inner Ear disorders.