So you think you might have vestibular migraine - what do you do? Who are the best doctors? How do you get on the path that feels steady again? This is the vestibular migraine guide for you!
Many of us didn’t know what the heck was happening to us when we began to experience many symptoms like vertigo, imbalance, derealization, and brain fog…and neither did our primary care doctors.
If you’ve read my story, you’ll know I started out with a primary care doctor who told me I was stressed. Then an ENT doctor who thought it was a neuritis and would go away. Then to several neurologists who said I just had anxiety. There was that vestibular rehab clinic that told me I probably had a perilymph fistula too.
As we bounce around from doctor to doctor, never getting answers, the problem begins to feel insurmountable. I put together this little guide that can help you know where to start and what the process might look like.
Jump to:
1. Review The Symptoms
First of all, read this post about common vestibular migraine symptoms.
Do any of these symptoms match yours? If so, it could be vestibular migraine or another vestibular disorder. Since vestibular disorders can mimic each other it’s important to be properly diagnosed by a physician familiar with these disorders and not by Dr. Google or Random Person In Your Support Group.
2. Find The Right Doctor
Find a doctor that knows what they are doing & be prepared to wait.
If you want to start with your primary care doctor - go for it! But in my experience, I wish I would have fast forward to the doctor I really needed to see, saving myself a lot of money. The only catch is you may need a referral to one of these doctors from a primary care doctor.
Also keep in mind that not all neurologists or ENT’s know how to treat vestibular migraine. Since it’s a fairly new diagnosis, some have not even heard of it before. The most reliable choice is a neuroTologist - who specializes in the inner ear. However, doing a little research and calling around can get you far.
Most doctors will mention what they treat on their website, but if they don’t call and check with their office to see if this is something the doctor is familiar with. Keep in mind that there are less than 10 doctors who are considered experts in this area and their wait lists prove it.
My neurologist, Dr. Beh, had a 7 month wait list, but I was persistent, always calling for cancellations. Put your name on the list while you search for other options and be willing to travel for the best care. Now many of these physicians will do teleconference, so please double check with their office if you cannot travel.
US doctors who treat Vestibular Migraine that I have seen personally or have come highly recommended by patients:
- Dr. Edward Cho - Formerly House Clinic, now Cedars Sinai Medical Center
Phone: (310) 423-1220 - UCLA Migraine Clinic
- Dr. Shin Beh - Beh Center for Vestibular and Migraine Disorders (this is my personal neurologist who does online and international consults). Does not accept insurance so his treatments aren't limited...still 100% worth it.
- Dr. Timothy Hain - Chicago Dizziness and Hearing (retired as of 2021, but clinic is still open with Dr. Cherchi.)
- Dr. Christopher Danner - Tampa Bay Hearing
- Dr. Cho & Dr. Jann - NYU
- Dr. Michael Teixido, ENT & Allergy of Delaware I've had some mixed feedback lately from patients here lately but hoping it improves!
- Dr. Bryan Ward and Dr John Carey Johns Hopkins (SCDS and Meniere's focused)
- Dr. Kristen Steenerson Stanford
- NeuraHealth - all online. Dr. Thomas Berk specifically for vestibular migraine.
UK doctors recommended for VM:
Dr. Luxon (private) and Dr Agrup in London. Although Dr. Beh will do international consults. I recommend Dr. Beh and Neura Health for those in Canada as well.
3. Prepare for Your Appointment
Before your visit, keep a journal of daily symptoms. Mark down everything, even if you think it’s not important. What was your level of dizziness that day? Did you fall? What does your diet look like?
Apps like Migraine Buddy can help with this and will even summarize it for the month for you. I just kept an old fashioned journal. Pick out the symptoms you have from the vestibular migraine dictionary and use them to describe your feelings when with your doctor.
Other things to think about:
- Does your family have a history of migraine, even if just occasional?
- Do you notice any light or sound sensitivity?
Just because you do not get "headaches" does not mean you don't have vestibular migraine. I was diagnosed without a single episode of head pain.
4. What to Expect
If visiting in person, vestibular testing will most likely be involved. Typical tests include an MRI, and VNG/ENG, a VEMP test, and a Rotary Chair test. Your doctor might also perform a Dix Hallpike or Epley maneuver to rule out BPPV. All of these tests are checking for other vestibular disorders, which can also occur along with vestibular migraine.
- Be open to medication, but don’t research too much before. Your options will most likely be an SSRI/SNRI, beta blockers, antidepressants, or anticonvulsants. Options like the new anti-CGRP meds and Botox are typically reserved for later in the process, if you fail or cannot tolerate certain meds. I find if you go down the rabbit hole of researching medications, you hear the worst of the worst stories. The thousands of people who have this drug working for them don’t go online to post about how happy they are. They’re out living their lives.
Here’s a medication flow chart that Dr. Hain uses for vestibular migraine, but remember medications are not one-size-fits-all. For a full breakdown of new treatments, watch this interview with Dr. Beh. Remember that medications can sometimes take 3 months to show improvement. Injectables and Botox can sometimes take 6-12 months. - Discuss acute medications like rizatriptan and certain benzodiazepines, which can be used as rescue meds for bad attacks or when traveling. Here are some other vertigo treatments you can try during severe attacks.
- Consider natural treatments - Cefaly or GammaCore, motion sickness bands and/or glasses, plus the proven supplements for migraine prevention like magnesium, B2, and CoQ10 should be discussed. Your doctor will decide what combo and dosage is best for you. The right treatment plan for me got me my life back.
- Your doctor may suggest VRT (vestibular rehab therapy). This is just therapy that helps retrain your vestibular system to accept motion without causing dizziness. If you’re very sensitive to certain head movements, visual stimuli, or positions, this therapy can be helpful. It can be simple movements, like looking from left to right continuously. Or turning your head while focusing on a dot. More complex movements may involve bouncing a ball while your eyes follow it. Or bending over and picking an item up off the floor. It is important to note that vestibular therapy can sometimes make symptoms worse if you try it while your brain is overloaded with vestibular migraine attacks. This is why it's important to seek out thoughtful care with the right team.
- Formulate a plan. If you’re not seeing an improvement in 2-3 months, what does your doctor suggest to try next?
- Talk with your doctor about diet, but take it with a grain of salt (no pun intended). There are many doctors who don’t believe diet has an effect on migraine, but most of the top ones listed above do, at the very least, believe that a low tyramine, additive-free diet can be beneficial for migraine. Here are the diet sheets from Johns Hopkins and NHF.
5. Books for Vestibular Migraine
Read Heal Your Headache, The Dizzy Cook, and Victory Over Vestibular Migraine
Even if you don’t get headaches (like I didn’t), this is still worth a read. Some of it is a little outdated, like some of the information about decaf coffee and rebound days, but it’s so incredibly helpful. Dr. Buchholz touches on vestibular migraine, but that’s not why you buy this book. It can help you understand big picture thoughts on medications, the threshold theory, rebound and why Excedrin can be so bad for you.
The diet is based on his 30 years of experience with migraine patients, and although some don't agree with it, enough people find it helpful to be worth reading.. Also Dr. Hain has some wonderful papers about vestibular disorders published on his site here.
If you need extra help, The Dizzy Cook book has it all laid out for you easily! Endorsed by Dr. Buchholz, it is basically the patients perspective for implementing these changes into your life as easily as possible.
6. Implement a Migraine Friendly Diet
Whether it’s keto, a migraine elimination diet, or a Mediterranean Diet it’s one of the easiest things you can start doing for yourself. If you have a lot of other restrictions due to allergies like dairy free, gluten free or if especially if you’re a strict vegan, consider enlisting the help of a registered dietician to make sure you’re getting all the proper nutrients you need.
Food fears or being overly restrictive can easily lead to disordered eating, so try to pick one diet that works best for you and stick with it.
Don’t pile everyone else’s opinions and restrictions on yourself. I've seen a lot of crazy opinions about diet, and I try to just stay in my lane of what works best for me. Dietary changes seem to be even more effective for people with a vestibular component.
7. Consider Therapy
Many of us suffer with overwhelming anxiety. If you find yourself in this place, consider a therapist who specializes in CBT (Cognitive Behavioral Therapy).
Dr. Teixido also recommends the Feeling Good Handbook. Progressive muscle relaxation has also been very helpful for me postpartum. There are so many good, free videos on YouTube.
8. Visit VEDA
Head to the Vestibular Disorders Association website. This will provide more information on types of vestibular disorders and treatment. Here you’ll also find links to support groups, some online, and many different educational resources.
9. Find Support
A friend who is going through the same thing is invaluable. Often this can be done through private messaging someone you bond with in a support group.
When I saw Kayla’s story on VEDA I looked her up on instagram and sent her a message about us seeing the same doctor. We became instant friends since we were able to relate to everything, and eventually took our relationship to the phone. That eventually grew into meeting each other in person. And now she comes over and lets me test out recipes on her while giving me advice on marketing.
Make sure you're not confusing your support buddy for a therapist. If they're also going through something similar, they may be able to only handle so much venting and sadness before it affects their health.
Another important element is to choose the right support group. Some are more positive than others, and joining them all can immerse you in a world of negativity where you're scared to try anything new. I recommend a group like Miles for Migraine, who have both online and in person support groups, over joining anything on Facebook.
Find one you like and stick with it. Remember that the majority of people in facebook groups are still ill and haven't found their perfect combo yet (or they have given up). The ones who get better leave to go live their lives to the fullest.
So while it seems like some people feel awful forever, that's not the case for everyone. Me and many of my vestibular migraine friends are proof of that.
10. Give It Time
This is unfortunately not something that will change overnight. It takes a lot of work and consistency. I personally didn’t have any improvement for months. It took me over 2 full years to get to 100% days. Too often I see people stop a supplement or diet one month in. Or they’ll give up on a medication just a week in.
These things work together to help you, and some of the side effects can lessen over time. It is typically not a "take a pill and feel better the next day" kind of thing. If you’re concerned about a treatment you're on, speak with your doctor first before stopping anything they have prescribed for you. It’s important to not compare your progress to someone else.
My full vestibular migraine treatment plan.
Vestibular Migraine Posts
Shoutout to my friend and fellow VM warrior Megan Howard for her advice on this blog post! The post was updated 5.1.2020 to include new treatments and photos. It was updated again October 6, 2021 to include new doctor information.
I had my first appointment with Dr. Beh today. I was diagnosed with Vestibular Migraines and Persistent Postural-Perceptual Dizziness. Does anyone have any recommendations on reputable neurotologists that you may know of within the New Jersey?
Hi Alicia,
Thank you for creating this informative site for vestibular Migraines. I get headaches with dizziness and also anxiety. I am doing VRT, Cranioscaral therapy and meditations. You mentioned about some devices for migraine prevention. Do you know which you you find better Gammacore or Cefaly? I want to try it before jumping on medications as i have gastritis and can't tolerate many medications. I would really appreciate your feedback.
Hi Shewta,
I've currently only used gammaCore regularly and that has been helping me. But it seems like both help patients! It really just depends on what you're looking for and how you respond to either. I will say gammacore has been helpful for the anxiety component.
Great site! I was diagnosed with VM and PPPD 4 years ago. I was diagnosed by a psychiatrist at Mayo Clinic, MN. The reason he is familiar with it is because so many people were being sent to him with "conversion disorder" "psychogenic disorder" or "malingering!" He was the first doctor to actually BELIEVE me and then correctly diagnose me. Since beginning this diet and working with physical therapy (who always believed I had a balance issue because I couldn't turn around without nearly falling over) I was able to drastically reduce my VM incidents. My main triggers are beef, gelatin, bananas, avocados, and SUGAR! I also have found that by taking a daily allergy medication (loratadine) I can play a bit more loose with my triggers (I can handle more before tipping into a VM). And if I feel one starting, I can reduce the severity with naproxen sodium (Aleeve). Though, I only take this if I have to to reduce rebound occurrences. Thank you for this site! I will be visiting often!
Hi Alicia,
I was diagnosed with PPPD a year ago, after starting out with headaches, migraines, and a vertigo incident. I went through various testing (bloodwork, CT/MRI scans,) to rule out things. I am still experiencing dizziness on a daily basis, but the severity ranges each day. I'm wondering if you've heard of PPPD and if theres anything specific you'd suggest on your website that would help with my condition? It is classified as a vestibular disorder, and I am also doing vestibular PT, taking supplements, seeing a nutritionist and doing acupuncture as well. Thank you for sharing your story-I could relate on many levels and will be reading through your website now!
Yes Matthea! I was diagnosed with VM and PPPD. It took a year of PT and this diet, to straighten me out (no pun intended), but I am finally living a mostly "normal" life. Get the book Heal Your Headache and follow the food list, it will really help! I also (accidentally) found out that a daily dose of allergy medication (loratadine) was helpful. However, the key really is the diet. Other things help, but avoiding the triggers is the cure.
Let me tell you. I would not have made it 5 months in on the Heal your Headache diet if it wasn’t for this site, the Dizzy Cook book , and Alicia. I have even messaged her on social media-and got responses back! Imagine being as busy as she is, but still taking time to respond to people’s questions about this diet etc. It speaks volumes about the person she is. She really cares about people and their well being. If you’re looking for dinner ideas, advice, or just someone to relate to, buy the The Dizzy Cook book! I promise you will not regret it and will feel so
Empowered and knowledgeable after finishing!
I'd also like to recommend Dr. Ian Malm, an ENT in Minneapolis/Saint Paul. He is a young doc who did his residency at Johns Hopkins and is well-versed in vestibular migraine and HYH.
Hi Alicia,
I am wondering if the HYH Diet is equally and/or even partially affective for those who suffer from chronic migraines and not vestibular migraines?
Hey Courtney - it's for all types of migraine disorders, not just VM! I do think people with VM tend to see the most benefits from dietary changes, but the book itself is written for all types. This post is a little more general.
Hi Alicia,
I've been dealing with the same symptoms for years but I haven't found a good doctor. Does anyone have a recommendation for a doctor in the SF bay area?
thank you,
Lynn
I’m in the sf Bay Area too
Did you find anyone?
Hi I a also In the sf Bay area and hoping to find a VM doctor. Would be grateful for a recommendation
Hi Alicia, Great website and a great source for people with VM. I’m new to this but the least bit of support helps. I’ve been recently Diagnosed by
my current neurologist but she seems to not be too familiar with managing patients with it and she only gave me one treatment option - thus, looking to seek someone who will be my guide. I am in the NYC area and am making appointments now with Dr. Cho and Dr Jann from NYU. Wanted to confirm if these doctors are managing your readers with VM or if they just helped with diagnosis. Also reaching out to know if you received any other names in the NY area. All the best with your labor and little one on the way!
Yes I've heard good feedback about both doctors, but haven't heard of anyone else in a while. Dr. Teixido might be doing online appointments too and isn't terribly far away either. Thank you so much!
My Mom is suffering. Been to Dr Haine. She needs help. Tried vestibular therapy but began getting headaches, eyeball pain stopped therapy. Falls often and very dizzy
Hi Alicia,
I’m wondering what you or your doctor consider “remission” for VM? Hoping to get there one day !
Thanks!
So I consider remission to be a year without an attack. Some people classify it as 6 months. And there are some that say you can go into remission from chronic (to episodic) migraine. It's definitely possible. My neuro says he sees it often (and good for him cause his wait list is too long now!).
For me, I haven't had a debilitating attack in a very long time...like probably almost a year or more. There are some days when I have extra brain fog or dizziness creeps in, but it's never anything bad enough that doesn't clear with a good night or rest or a few of my tricks. It definitely does get better...dont give up that hope!
So excited to find your website as a vestibular migraine suffer for the last ten years and a patient of Dr. Hain. I have done varying amounts of the migraine diet over the years but was wanting to dive back in and am really excited to read your recipes and have loved reading your story and those of others with VM. It sometimes feel so lonely and difficult to explain to others this condition.
I did want to add though that Dr. Hain does NOT recommend vestibular rehabilitation therapy for migraine associated vertigo as recent studies have shown it to be ineffective. And from personal experience, I went earlier in my diagnosis at the recommendation of a different neurologist, I never found it that effective. Sometimes it caused migraines or increased the dizziness. Just saying there may be some disagreement in the Neurotology community on that one. Dr. Hain talks about it briefly here: http://dizziness-and-balance.com/treatment/rehab.html
But mostly thanks for your awesome site!
Hey - thank you! I noticed in his page he says it's still shown to be helpful, but you're right, there is a disagreement within the community. I think another thing that makes it difficult is there's a lot of crossover with VM and other vestibular disorders as well, so perhaps people who benefit most also have another vestibular disorder.
I was also one of those people it did not help (and made worse) in the beginning, but I was also not being supervised by a neurologist (which Dr Hain says in the piece should never happen) and had therapists who had no idea what they were doing. Unfortunately these were the only people who recognized I had some sort of vestibular disorder at the time.
I did try again later on with UTSW's therapists and had amazing results. I was being treated for migraine but also had a lot of motion and visual sensitivity, so my neurologist thought it could be good to add to my treatment plan. It helped me a lot with visual triggers, but only after my brain had calmed down a bit with the other methods I was on. I hope that helps a little bit! But people doing exercises at home for VM...probably not going to work.
Thanks, it’s interesting to hear that it didn’t work as well for you until later. I guess if I think back on my year or so of PT it tended to sink in best when I was not in the middle of a migraine storm. And I just noticed Dr. Hain’s other page on scam PT—juicy! But my old place was on his approved list.
My symptoms are way worse this time around. I can’t imagine getting through many of those PT activities right now or for most of the last year. A lot of things I did last time I had a bad couple years don’t seem to be doing anything this time around and I guess I’m just pretty frustrated. Sorry if I let that frustration escape into the internet. But I’m hoping maybe getting back on the migraine diet will help!
I saw that!! Very interesting, but obviously I had something similar as well. I really hope the diet and some of the supplements help you get back on track, or perhaps maybe look into something like the timolol drops or another medication. I wouldn't get too hung up on the vestibular therapy part. There's definitely other avenues that will probably help you more. Migraine is a nasty beast that just changes on us sometimes unfortunately.
Hi Alicia, I just got your cookbook from Amazon today and am looking forward to enjoying your recipes.. Thanks for all you do. I'm new to your website and am still exploring the information you've provided and am I'm trying hard to follow the HRH diet. I've purged my refrigerator and pantry of all problematic food twice. I still have problems but am trying to stay positive. My biggest problem I could use advice on is how a vegetarian can get enough protein while following the HYH diet. It seems the protein supplements are problematic. I've started adding chicken thighs to my diet but would love to go back to vegetarian. Also not sure how to find insect fed chicken thighs. Plan to start cooking from your cookbook tonight. Pat
Hey Pat - I think you'll find this post helpful. It's about vegetarian protein sources that are allowed on this diet.
I was diagnosed with vestibular migraine disorder recently but have had these symptoms for a few years now. I just started following your migraine diet food list but would like to know if corn tortillas and popped corn are allowed on this diet? If so what ingredients can only be in the corn tortillas?
Hey Lu, most corn tortillas are ok!! You just want to watch out for any with a long list of ingredients or malted barley (which should not be in them anyway). Popped corn without flavorings are also allowed! Add some melted Kerrygold butter with it and that would be delicious.
I was diagnosed with vestibular migraines last week and I am so intrigued with your posts. Please could you send me all your supplements that you use, I am currently taking B2 riboflavin twice a day.
Hey Kimberley - all the supplements are use are here and how I take them is here. Hope that helps!!