Is MAV common?

I wrote a few weeks ago about my recent Lyme Disease diagnosis.

I’ve been reading recent posts about the prevalence of migraine, and I completely agree that migraine is a VERY common disorder. However, I can only speak for myself. My symptoms - 24/7 disequilibrium,extreme fatigue, flu like, and recently, some visual problems, brain zaps, and the list goes on and on, are NOT common! Unfortunately, Lyme Disease is very common and often (not always) the underlying cause of many, many disorders. It can affect any part of the body, including the central nervous system.

Lyme DOES exist outside of US. I have friends who are ruling out potential lyme, and have got plethora of information from this site: Lizzie - I apologize, I forget if you originally supplied me with this info. I just wanted to supply this site if anyone decides that they would like to learn more about lyme. My only motive is to help others,and save others from the unreal suffering that I have endured these past 6 years. I have worsened throughout the years, even though I was extremely ill from Day 1. I would hate for anyone to go through the years of suffering that I endured, including the trial of nearly 15 migraine medications. and, please remember, that even if a migraine med helps a bit, that doesn’t rule out Lyme.

Hi Lisa,

We know migraine is certainly very common, especially among women at about 16%. After headache, vertigo is the second most common symptom. Chronic migraine is also appears to be “common” (5%). Given these facts, a person with MAV is not at all rare. In this group there is obviously a wide spectrum of people who experience vertigo sporadically and others who experience it chronically. In this group people share a whole host of neurological symptoms from visual symptoms to brain zaps to flu-like symptoms.

What I think is rare, however, is for someone to have an intractable case where lifestyle modification makes mo impact or, failing that, where a long list of migraine medications make not even a dent in the side of this. And so in your case, you either have the most intractable case of migraine we’ve ever seen (falling into the 20% Rauch mentions where lifestyle or meds do little to raise threshold) or it’s simply not migraine. The latter appears to make much more sense at this stage and so tackling what appears to be a Lyme dx is the right path to follow considering you had some positive test results come back.

Have you started treatment for it yet?

Just started. Going be a long road. If ever interested in learning more about treatment etc this is useful resource.

Good paper, thanks. S

Dr Burrascano is one of pioneers in the research of Lyme and other tick-born illnesses. IMO, I am not saying I don’t have MAV symptoms but for me lyme is the CAUSE of my once yearly migraines manifesting into what I have now. This goes way beyond genetics for me. I am learning that lyme often attacks a person’s weakness - so a migraineur is more likely to have MAV-type symptoms as their Lyme presentation compared to a non-migraineur. My doctor who has treated 12,000 patients over last 20+ years explained this to me. He is world- renowned for treating Lyme. He also has found Lyme to be underlying cause for various vestibular presentations. Not always the cause of course.

Interesting – so Lyme could be the thing triggering the migraine button in the same way a BPPV attack could or VN … so could you have MAV and Lyme going on 24/7?

Correct. It can trigger varying vestibular presentations.

Or trigger migraine button as u said. Well put

Thanks Scott and Lisa. This is a really good explanation of how mav and Lyme may interconnect.

I read somewhere Dr. S.'s calling migraine an “irritated brain.” Conceivably, there could be many conditions that would trigger the 24/7 symptoms of a “madder than hell” brain. It could be anything from a head/neck/vestibular injury, hormonal imbalance, some food intolerances like gluten etc., environmental toxins, to some latent microbe hiding out in the system. It takes an open mind and a lot of patience to try to uncover the driving force behind these symptoms. Unfortunately, the doctors are often as clueless as we are when we are first initiated into the lovely world of vertigo, so It often becomes a do-it-yourself kit. Kudos to MavLisa for not giving up in her quest to get to the bottom of her symptoms.


I agree with all you wrote. so well said. I greatly appreciate your kind words about my determination to find answers. that means so much to me. To be honest, I am happy to have hope now, but am terrified of the road ahead. Lyme treatment is very difficult,which is an understatement. But, at least there is hope for me.

I always believed that there had to be a REASON why I went from infrequent migraines to all these symptoms. I might have had a slight migraine history because of genetics, but there is much more to the story as to why I now have these MAV symptoms, and went from being incredibly healthy to crippled. IMO, they are a constellation of symptoms, given a name, MAV. Luckily, migraine medications help many with MAV symptoms. However, IMO, there is an underlying reason for these symptoms, beyond just saying migraine. 24/7, crippling, neurological, dizziness, is very different from episodic migraines or even episodic vertigo. One of top Lyme doctors speaks about patients with neurological symptoms, as having a “buzzing” in the brain. that description greatly resonated with me.

Hi Lisa,

I was wondering why you say the treatment for lyme will be difficult- I thought that at least the standard starting treatment is a month of antibiotics- specifically doxycycline. What is your dr. recommending? if it is months and months of antibiotics, what is the reasoning behind this?

I was also wondering if you get any joint pain and if that might signify lyme as well?

Scott - what does dr rauch do with the 20% that meds and lifestyle changed make little or no difference.

Could the 20% be because mav is the wrong diagnosis?


sorry just wrote to you but somehow got lost. I’m sorry if this is brief. been so hard to look at computer. one month of doxy definitely isn’t enough. treatment of chronic lyme that is in later stage can sometimes even take more than 1 year. It is very complicated as people with lyme oftentimes have other coinfections like babesia and bartonella, and lyme takes different forms in one’s body in order to evade one’s immune system. so, need medications to treat all forms and coinfections as well. lyme also goes through life cycles and have to kill it when it is present. it is so complicated. I am still learning. the film, “under our skin” can explain better than I ever could. Dr. Burrascano’s protocol also explains things well

Joint pain is a common symptom in lyme, but you do not have to have joint pain. I do not. although, I have different problems that never had in past like wrist issues.

Hillsta - I truly think that the fact that a medication works doesn’t mean that one has MAV without an underlying reason. as I learn more, it seems to be that MAV is a constellation of certain symptoms and many with those symptoms do find relief in migraine meds. but, that doesn’t rule out that there is a CAUSE for having MAV, especially when it’s chronic dizziness. but, that is true. there are a percentage that don’t respond to drugs. as you know I’ve tried so many without success


I have mentioned it before but the top docs all say that the majority of patients after time can come off the migraine meds and live a normal life

Surely this proves that there is no underlying cause to the migraine

Dr s told me that the vast majority of his patients were under al lot of stress leading up to there big bang. This explains the bucket over filling!! A lot of us have a family history of migraines.

There might be one or two people on here who have other underlying causes. E.g lyme. But we need to try and make sure we don’t make people go looking for stuff that isn’t there

I hear what you’re saying. but, sadly, Lyme is an epidemic.

i hope that’s true about people getting well on meds, then getting off and staying well. I know many who have gotten better (not 100%, but better) on meds and couldn’t get off without symptoms returning. my MAV docs told me that as well, but I have yet to see many people getting off and feeling well. maybe I’m wrong - I hope I am.

I don’t think Lyme disease is common in the Uk Lisa.

I think we understand that you say it is more common in the US.

It’s a very interesting debate about whether there’s always something causing mav, Lyme being one example, but I’m confused as to why people come to a migraine forum and go on and on and on ,making the same point 20 times over. We read and understand the first time, and are grateful for the info and discussion but I just don’t understand why the same points seem to be forced down our throats by some.

I’m sorry if this sounds harsh, I just don’t know why people can’t be clear, concise and coherent, like Lizzie for instance who calmly and sensibly just posts facts about her diagnosis, with a sense of level headedness rather than scaremongering and running around waving her arms in the air.

I realise people are only trying to help, but I fear the way things are sometimes presented , actually have the complete opposite effect.

I think we should clarify some things:

— Begin quote from “MAVLisa”

I truly think that the fact that a medication works doesn’t mean that one has MAV without an underlying reason. as I learn more, it seems to be that MAV is a constellation of certain symptoms and many with those symptoms do find relief in migraine meds. but, that doesn’t rule out that there is a CAUSE for having MAV, especially when it’s chronic dizziness. but, that is true. there are a percentage that don’t respond to drugs. as you know I’ve tried so many without success

— End quote

The underlying cause of a true case of migraine associated vertigo (MAV) or vestibular migraine (VM) as it’s also called – is, as the name suggests, migraine disease. Migraine is a genetic disease, one that a migraineur has inherited, a set of genes that for whatever reasons become activated at some point in a person’s life. MAV or VM is therefore a migraine variant. There is a spectrum of sufferers who fall into this category from sporadic to chronic vertigo type symptoms. The disease changes over time. It may get worse or better. It’s unpredictable that way.

Lisa, I think what you are trying to say and I think it’s important to get the semantics correct, is that you have a dx of Lyme disease and you also are a migraineur. The latter goes back before the vertigo began. It appears that if you in fact do have Lyme disease, it may have been the “big bang” for you that pushed you into the chronic state. Now, whether your dizziness is from the Lyme disease or migraine or both I really don’t know – just like it’s difficult to pull Meniere’s and MAV apart. However, Meniere’s and migraine can coexist in the same person (unfortunately) and obviously so could Lyme and migraine disease.

I’m not totally clear on the prevalence of Lyme disease because it depends on ticks being present but I have seen from a number of sources that CSF leak, for example, affects about 0.005% of the population (I’m sure Lyme is much, much higher than this in NY). Now, while Inafog appears to have clearly been a CSF leak sufferer (total recovery I understand after the patches), it should be put into context (which I think is what frustrates MissMom). And that’s why the statistics matter on this stuff. The analogy that always comes to my mind is this: if a person has a running nose and sore throat showing all the signs of a garden variety cold, then it’s highly probable it’s a cold and not some rare African disease that a small fraction of the population gets which mimics a cold. Migraine is obviously not as clear cut as a common cold and is more often a dx of exclusion but a lot of the time it is pretty clear when the genetic history is there, there is headache, light sensitivity etc. For the majority of people with unexplained vertigo (after ruling out other central and peripheral causes) it makes sense to make migraine the first port of call.

Lisa, you live in an endemic area for Lyme disease, have been through a huge range of migraine meds and have basically turned over every migraine stone there is and so it makes perfect sense for you to go this route now. I certainly hope this next treatment finally makes a dent in this for you and puts and end to it.

The reality is that a lot of diseases are diagnosed based on clinical presentation and because symptoms often overlap there is much room for misdiagnosis. It would be awesome if there was some magic test that could tell you with 100% certainty that you have lymes, MS, fibromyalgia, MAV for that matter, but unfortunately for many diseases that is not the case. Doctors don’t have all the answers and there is still so much to learn. I went to a doctor who was diagnosed with MS who later found out that she actually had celiac disease and completely recovered with a gluten free diet. There are countless people who have been diagnosed with ms, Parkinson’s, fibromyalgia and ALS who later responded to lymes therapy. Had they just accepted their diagnosis they would have been left to a life of needless suffering. MAV is obviously a real condition to which many recover with lifestyle changes and medication. But if you are not getting better and your quality of life is crap and you aren’t getting answers then why leave any stones unturned. I think Lisa has suffered long enough and it takes courage not to give up and continue to have hope that things can get better when your missing out on your own life. I think she is just trying to encourage others to not give up or stop looking if they aren’t getting better.

Leanne - thank you for your incredibly kind message. that is exactly my intention. you said that way better than I could have.

MM - my intention was only to help. I am a very subdued person and certainly not someone to wave my hands in the air. If I could even save one person from suffering, then posting about Lyme Disease will be well worth it. I have been around this board for years, and I am sure others could attest that I am not a perfect person, but I am a kind person and a good person and I only have the very best of intentions. it pains me to think of others going through what I have gone through. and, coming back to these boards is NOT easy for me. I get terribly sick from the computer, but I am willing to do it in the interest of helping others. it would be much easier for me not to post, but that is not my personality. when I feel I could be of help, I want to provide that help and information. people have done it for me, and if they didn’t, I would have NEVER EVER had a shot at living again.

Scott - true - I do live in one of the most endemic areas. but, Lyme Disease is truly an epidemic; therefore, it is not so outlandish for these symptoms to be caused by Lyme Disease in others (not everyone, of course) Lyme Disease is not as rare in UK as you think. you can easily get the statistics from I wish so much it was rare, as it is a horrible illness, but there is hope. when I was originally finding out about Lyme Disease I didn’t believe it was as prevalent as it was. I was so defensive when people brought it up to me. but, learning about lyme disease has been an incredibly eye opening experience for myself and my husband. Again, my only intention now is to help. all I want is for others to get well.