Vestibular Migraine Survival Guide 2014

I’ve only recently found this forum and I’m working my way through all the information here, and there is a LOT! :slight_smile:
Thank-you, thank-you, thank-you, ALL. You have NO idea how grateful I am to find a group of people who understand what I’m dealing with!

I still do not have a diagnosis of MAV, but I guess that is not surprising given the apparent confusion, even among professionals, about vertigo. My ENT doc had suggested MAV when all my tests came back normal, but then said he didn’t know what it was when my second round (2011) turned into a chronic condition.

Some background:
My first episode of vertigo was more than a year ago. The initial attacks were a few seconds of imbalance at work while standing on a floating dock - almost a “black-out” or fainting feeling. The subsequent attacks were more severe with sudden onset, vomiting, and inability to walk unaided. These attacks were of much longer duration from hours to days. The sensation was of spinning, or for anyone who has experienced the “one drink too many”, it’s where the whole room is revolving around you while lying flat on your back in bed.

The episodes of severe vertigo would be initiated by sound, or movement, or strobe-like lighting, or even watching a lot of movement on TV while sitting unmoving in a chair. This went on for about 2 months then stopped and I had no attacks for a 10 month period.

My GP initially said it was BPPV, but the ENT doctor said no it wasn’t. I also experience hearing loss (high frequency) in my left ear and developed tinnitus at the same frequency as the hearing loss. I have had a multitude of tests including blood tests, heart, MRI, electronystagmography , and all return normal results. Most tests were performed during the 10 months when I was symptom free.

This spring I had a sinus infection which included fullness in the ears and I had a relapse of vertigo which has not gone away. I have been dizzy for more than 3 months- 24 hours per day. The onset included a sudden initial vertigo experience that included vomiting and the inability to walk unaided. It did, and still does, feel different than the previous years’ vertigo, in that the world is not spinning around me, but rather it shifts and heaves. I have difficulty focusing on the horizon as it appears to bounce. While the symptoms have been lessening over time, no one appears to have any idea what is wrong with me. None of the medications prescribed have alleviated the symptoms, although gravol does stop the nausea. I still cannot drive, cannot work, do not sleep well, and I’m depressed and dizzy! I’m starting to have panic attacks which manifest as racing heart, pounding in my chest, and a feeling that my airway is closing. I had panic attacks as a young child, that never reoccurred until now…
I was an active person – swimming, hiking, boating, etc., and I want my life back.

I’ve been doing “Cawthorne-Cooksey” exercises to assist with readjusting to the dizziness, but I would prefer to have an answer to my question of “what is causing the problem” so that I can perhaps treat the cause rather than the symptoms. Perhaps I’ve found my answer here.

Also as background, I experienced car-sickness as a child, had migraines as an adult, but never had motion sickness issues as a young adult… I loved rollercoasters, and carnival rides, and I travel by open boat frequently (at least I used to).


This is great information. I am new to this site. I was diagnosed with MAV 2 months ago after seeing a total of 14 Dr.'s. I’ve had this problem for about 6 months now. 6 months of constant “rocking” vertigo. I have the headaches too. My Dr. put me on 240 mg Verapamil (been on for about a month) and added 30 mg of Cymbalta today. I’m praying with all my heart it works. I have two small children and this MAV has robbed me of my life. I’ve read Dr. Buccholtz’s book and I actually have an appt. to see him in Dec. I’ve exchanged email with Dr. Hain and he’s amazing, he’s why I added they Cymbalta.
It’s soooo nice to know that I’m not suffering alone. It makes me feel a little less crazy. I’m pretty sure at this point that all my friends and family think I am crazy! MAV sucks!!

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This is great! I am suddenly overwhelmed though!

Oh my gosh, some of your descriptions of symptoms have just made me cry.

Even though I have now been diagnosed with MAV I thought it was only based on the last 12 months of chronic vertigo, but reading your descriptions it sounds as though I’ve been suffering migraines since been a teenager.
For years I’ve had doctors tell me there was nothing wrong with me when I tried to describe the feeling of being disjointed from the world, suddenly ever so slightly off balance. I’ve grown up believing I was making it all up.

Thank you for making me realise I am in fact not losing my Mind!!!


— Begin quote from ____

Attacks often occur after periods of intense stress (letdown migraine) such as moving house, starting a new job, relationship break down

— End quote

This explains my trigger perfectly!

5 weeks and counting

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My first MAV attack occurred a year ago, just weeks before my first daughter was born, during a period of time that i was working 100 hour weeks at work against deadlines that were 100% impossible to meet. The stress level was unlike anything I had ever had before, especially since i was freaking out about becoming a new dad.

What I am curious about is, if I am able to get this crazy thing to settle down, will I be able to go back to being “ok” without medication? Is this like a physical injury where if you can get the inflammation to settle down and heal then can you move forward like you were before? Or will I be on medication pretty much forever?

I now suspect that I have been having “silent migraines” for the last 20 years, and the stress build up a year ago triggered the vertigo addition. For as long as I can remember, back to being in college, I would occasionally have these 1 or 2 day depressive episodes. Nothing serious. I would just think of them as “bummer days”, days where I was just bummed out for no apparent reason, where nothing was any fun and no one could cheer me up. I never thought much of them–I learned to ignore them because they always went away (usually with sleep) and they were usually spaced out pretty decently, never happening more than once every other month or so. I now suspect these days were days where i was having migraine symptoms and just didn’t realize it.

The massive stress of last summer most likely pushed me from being an occasional silent migrainer into a chronic MAV state. Hopefullly the Topamax is now taking care of that–but I would like to think there is hope for me to get off the meds after some prolonged treatment plan.

I know this is probably mentioned on this site often, but I am so relieved that I finally may have an answer for the last few years of my life. I have been in a state of chronic vertigo that coincide with a very stiff neck, cognitive fog, migraine pain, and general “out of body” feeling. I tried to describe one attack at the ER on a weekend when I needed treatment for “vertigo” but it felt more like I was not connected to my body. The doctor diagnosed with me with “giddiness” and dizziness, which was not at all how I would describe it. I have long since given up trying to find a doctor who can help me. My only success has been with a local pain clinic, and doctors there who give me lidocaine and steroid injections when I need them. (I also have spinal stenosis and si joint problems).

I am going to try the diet, I have recently mastered a good sleep schedule. The diet will be very hard, as will avoiding painkillers. Shooting for the first week of August as I simply have too much going on to deal with the short term effects of going off caffeine, cheese, bread, and painkillers. Thanks for the helpful tips.

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Hello tnmommy and welcome to the forum where you’ll find lots of help & advice. Your symptoms are very similar to many of us MAVers here (unfortunately).
If you can, make an appoinment with a specialist who understands MAV as there are many neurologists who don’t as some of us have found the journey to get a diagnosis long and frustrating. You’ll find lots of info re specialists, etc. here plus the latest ‘evidence based’ migraine preventative meds. The paper published in MedicineToday written by Dr Watson, Consultant Neurologist is a good one to print out & take to your own doctor and maybe start you on a migrine preventative.
There is such a lot to read here but if you let us know what region/country you live I’m sure you’ll get some useful recommendations of MAV specialists who can give you a diagnosis.
I found that cutting out caffeine & strong painkillers helped.

Scott…I cannot thank you enough for the Vestibular Migraine Survival Guide. My attacks have been gradually robbing me of my life and my happiness. Family and friends just don’t understand my episodes of depression that follow. VM is invisible to others…difficult for others to comprehend the excruciating pain we are having to suffer. Not to mention a nightmarish and life changing experience. The attacks are unpredictable and are affecting every aspects of my “once” happy life. I am now having to go on a long and very boring road to try and figure out the right combo of triggers avoidance and medication/supplements to knock this VM on it’s butt. Your VM Survival Guide is a godsend for me as I now have some document to share with family and friends. Thank Scott, thank you so very much~!

I have this and it is making my life completely and totally miserable. My symptoms started all at once 3 years ago and I have been suffering ever since- and it is chronic - not episodic. I am desperate for treatment options and to simply find people who understand why I feel like crap and am depressed all the time!! At this point I cannot take any meds cause trying to have a baby. I am appreciative of this forum and glad to have found it. The symptoms listed here are me exactly to a tee. I just wonder of others on here have this chronically too.

Sympathise with what you are dealing with, especially with wanting to start a family. There are several members who have had babies while suffering Vestibular Migraine. Ask on the forum & you’ll get some advice I’m sure. As to whether it’s episodic or chronic - most of us on the forum have the chronic kind. In the latest paper - Vestibular Migraine: Diagnostic Criteria - there is a para near the end which acknowledges the existence of chronic migraine - it is under ‘further discussion’ before being included in the next paper.

Thank you so much for this. It really helps. Glad i read it because it answered a lot of my questions.

Thanks Scott,
Fantastic information which has pointed me to a few triggers. I have suspected the nasal decongestant was part of my vertigo problem.
I skipped it a few days and had no vertigo. I used it this morning and was spinning in slow rotation within a few minutes with the neck stiffness.
I need to address the caffeine issue and diet also. The picture is becoming clear that my MAV is exacerbating my Menieres also.

Great to hear – I love knowing that this information has made a difference in people’s lives. :slight_smile:


As a new member to this club (yay…sigh) I wanted to say thank you so much for this guide. Much of what was described on here is my experience.

Are there any physical therapies that can target balance and dizziness? Do you need a physical therapist or can you do at home techniques?

This forum is truly wonderful.

Thank you,


Hi parmparm

Once your migraine is under control and if your still dizzy then its recommended that you find a VRT therapist


I can say that you are helping everyday more and more people all around the world who can understand English. Thank you for all those great information and for opening this forum. It makes my life much easier than before :slight_smile:

Thank you, thank you…thought I was going crazy and no doctors seem to understand. I got my first migraine in the fall about 7 years ago and did not correlate it with the sudden vertigo I experienced a few weeks later. What I found was that as I went through peri-menopause the months I would get my period I would either get a migraine before or after my period (which was happening sporadically). It took me over a year to put two and two together since I had never had migraines before EXCEPT when I had been pregnant. Hmmm! First trimester.

The following spring I woke up with the worst vertigo of my life. I could not move. On my own (no drs to help) I found out about Eply and asked my GP to get me PT and she did. EPLY saved my life. PT said she had never seen Nystagmus as bad as mine in all her years. All problems for me are left sided. Migraine, ear, neck.

Even though the vertigo was released, the dizziness lasted for months on end. I worked in a restaurant and they always made fun of me. The disassociation while walking is horrible. I have had panic and depression my whole life…and had just gone through two tours of duty to Afghanistan and Iraq with my son and a move to a new state and home and job (actually working two jobs).

I giggle now…looking back…son then at 23 has heart attack (hello stress) blah, blah, blah…stress, stress, stress

Now I have just gotten into graduate school at the age of 54 to become an Occupational Therapist. I start this fall. I have been in chronic migraine all summer with intense neck and trapezius pain starting the past week. I have botox in my neck and back, but not due till end of August. Tried PT.Got no relief.

Take Topomax daily…no caffeine, gluten, dairy, sugar or pain meds. Eat organic, whole, fresh foods. B vitamins, Magnesium, feverfew, hydrate,

Still at my wits end. I have not been able to work for 3 weeks. Restaurant (took 5 times to spell) is the worst possible job for this. Need to just quit. Wish my husband would understand what I was going through. He just looks at me with a blank look on his face.

Thanks for giving me a place to let my emotions out. :frowning: Lisa

Thank you, thank you, thank you!!! This is me to a “t”. It is fabulous to know others who have this condition and to have a resource as amazing as your survival guide. You put a lot of work into it and it’s outstanding :smiley:

I have a family history of migraines that started in my teens with bad headaches. I had my first “dizzy” episode 8 years ago, lasting for 6 months as it gradually improved and almost completely went away. The nightmare is back again as of 5 days ago. Like many on here I have neck pain and trap pain, one-sided ear ringing and “foggy” soft-focus vision, general “sea legs” and the most wretched feeling I’m going to pass out every time I either go to lie down or get up from laying down. Overall…I just feel off balance and generally out of sorts all the time. Had CT scans, heart tests, and in my previous attack just about every other test out there, including all the ear stuff.

Also diagnosed with Fibro due to widespread muscle pain I’ve had for years (mostly I think from being an ex dancer and high speed skier). I’ve been taking 20 mg of amitriptyline for about 4 years, which has really helped with sleeping. I take Zomig when I get a painful headache. Looking forward to talking with my Dr. about your recos for other treatment.

Thanks again!

Marby W

Hello - Thank you so much for this survival guide. I’ve been having symptoms for 20+ years, including BPPV. All the headaches I’ve had I thought were stress headaches, have been migraines. Who knew?! I’ve just been formally diagnosed with vestibular migraines (with a side of BPPV). It’s such a relief to have a “box” to put all of my symptoms in. Now onto management.

I’m hoping someone can answer some questions. 1) Anyone had any negative experiences with Inderal? 2) I’m looking for more information on food triggers. Generally I get a migraine about once a month. It appears to be hormone driven given it’s timing. How do food triggers work? Do you get a migraine right away, hours, days later?? Everyday I will have something that would be considered a trigger. Primarily citrus fruits and coffee. Everything else is sprinkled in my diet here and there. Except meat…which I don’t eat.** 3)** Has anyone had any success with getting the BPPV under control along with the migraines.

Again, this survival guide is super helpful. Thank you!