Hi there, I was diagnosed with vestibular migraine today and my MD told me to start here. I’m feeling a little overwhelmed so I figured getting some support may help.
Like most people with VM, I’ve suffered with migraine since I was a child, and have acquired a “tough it out” attitude towards them as an adult (which has also led me to deny diet as being a solution). Being given all of this new reading material today, I’m realizing how this approach is really working against my health. My MD told me that if I don’t get my migraines under control, I may eventually lose my hearing. As a musician and music producer, this really put some fire under my ass.
So with a Rizatriptin in my pocket and stress in my brain, I ventured to Barnes and Noble to buy “Heal Your Headache”. I’m now fully committed to changing my diet and doing whatever I can to learn all of my triggers.
I was diagnosed with Meniere’s 12 years ago when I was in college (the new specialist I saw today gave me the impression this may be a misdiagnoses.) For as long as I can remember I will have tinnitus followed by a brief loss of hearing sporadically. My dizzy spells came back with vengeance last week, along with a string of migraines. My biggest fear is that this will affect my sweet, somewhat new job. Part of my job involves testing workouts for an at home boxing company, where I have to do visual tracking along to the beat of music, and perform quality control while I’m working out. This has triggered migraines for me in the past, but usually I am okay.
I guess I would l like to hear some kind of confirmation to give me hope that making all of the diet changes I’m about to make and other lifestyle adjustments may help me in the long run.
Welcome @VMDrummer, sorry to hear you are suffering, as ever, but you will find everyone very friendly on here, I hope it is a useful resource.
There is much debate on diet, though the generally accepted one is called the “6C’s”, but I’d start with eliminating alcohol and caffeine. Salt intake is not usually considered in a MAV/VM diagnosis, so I’ll leave that one up to you to experiment with and/or get guidance from your physician.
Try not to adjust your lifestyle too much imho, avoidance can often make things worse in the longer run, but it’s really personal.
I am a supportor of trying eliminationdiets. Like migraine diet or hyh diet or a histamine, Tyramine! Oxalate diet as I did and you find it helps then yoh should look further into looking at why you are so much more sensitive now than before. Personally i had to avoid as much histamine, tyramine and oxalates as I possinly could into order to begin to heal my leaky gut. You wont find my posts due to admin here until you reach level 2 user here. I got better after many years of misery.
If you find a minimal diet like hyh diet helps you then thats great! Try to heal your gut so you can reintroduce food triggers so they arent triggers anymore.
I personally used to get triggered by even a bite or two of food.
Side notes! Frozen food be fresher than fresh food as strange as it may sound. No leftovers as bacteria eat the food and increase histamine and tyramine. Also the longer something sits in a refridgerator, the more bacteria eat your food as well. I went pretty extreme! Everything was frozen as much as possible, that way bacteria basically do not increase histamine and tyramine in the food.
There a bunch more to know! I hope youbused this sites search function to find other stores about hyh and migraine diets.
Wow, thanks @Gutwell for sharing your knowledge! I got a food order today to eliminate tyramines.
I’ve had general GI upset/bloating for a long time but it seemed to get better when i cut out lactose. But today i cant stop burping, i think it’s from my veritgo and migraine giving me an upset stomach.
Today is rebound migarine from taking a triptin 3x this week, no caffiene and just stress over all of this I’m sure. I hate feeling limited and not being able to work much. The flashing lights on the machine i use are just too much for me right now. And the other parts of my job invovle lots of screen time and more flashing lights. I’ll figure it out.
Hi -I’ve used HYH for the past few years and it’s really helped. I have introduced a few things like one decaf tea a day and a little butter on toast when I have toast. I really notice if I’m a bit lax e.g. on holiday etc. One thing I would say is that’s it really hard to eat out on it. I resort to steak and chips and veg! And I am religious with my magnesium. B vitamins don’t make such a difference for me. I’m amazed at the work you do!
Btw, I could be wrong but no previous statement of this extreme on this forum springs to mind. VM to my knowledge rarely results in significant loss of hearing, although we do have a (very) few members who have. It’s exceptional though.
(I should point out that as part of my condition I have minor high frequency loss but have a feeling that it might be reversible with time).
Sounds to me like he turned over two pages in his medical textbook at once and is confusing migraine with Menieres.. I’ve always thought that was one of the main diagnostic differences. If you lose hearing it was Menieres if you don’t it was VM. Ask @sputnik2. I’ve a feeling she will have input.
He didn’t actually say the Meniere’s may be a misdiagnoses, but he didn’t talk about it at all (so speculation I guess). He said when I get a migraine, the blood flow to the nerve innervating my inner ear is most likely decreasing, and this happening so frequently due to my chronic migraines (even potentially when I don’t have vertigo), it’s damaging my ear over time and causing these symptoms. He also said I may lose my hearing regardless even if I get my migraines under control, due to my genetic predisposition. My mother had otosclerosis at my age and needed both of her Stapes removed. My doc said that’s still clinical practice now, either that or wear a hearing aide.
But now I’m curious and looking diagnoses criteria from when I worked with a very well known vestibular specialist a couple of years ago (I’m also a physical therapist assistant and work for a continuing education company).
Migraine vs. Meniere’s
Migraine
• Spontaneous Vertigo
• Unilateral tinnitus and
fluctuant hearing
• Unlikely permanent
progressive hearing loss
• Mild VNG findings including
mild asymmetry
• Duration of vertigo seconds
to days
Meniere’s
• Spontaneous Vertigo
• Unilateral tinnitus and
fluctuant hearing
• Likely permanent
progressive hearing loss
• Mild to significant VNG
findings including mild to
significant asymmetry
• Duration of vertigo > 20
minutes and < 24 hours
Seems VM shows unlikely permanent hearing loss as of research from 2020. But I think there is different knowledge out there, because I also read the same theory my doc told me in Buccholz book. @turnitaround
Some other interesting information based on this study: Radtke et. al Neurology 59, 2002
Prevalence: 56% of MD w/ Migraine vs.
25% of controls
Occurrence of Migraine sx during MD
attacks
• 45% have at least one Mig sx always during
their spells
• 56% of the MD patients have photophobia
during spells
• 14% had HA 100% of the time during spells
• 14% had HA > 20% of the time during spells
Migraine & Meniere’s - Link?
• Could the MD attacks be Migraine events
instead?
• Explanations for high prevalence of Migraine
in MD:
MD patients have VM and not MD
or
there is a pathophysiologic link
between the etiology of MD and Migraine
We have a lot of this debate in #research-theories-controversies but it’s only open to longer standing members with Trust Level 2 (gained with positive engagement with the forum) as some newbies get anxious talking about this stuff.
Just my two cents - my best diet is ketosis. And a lot of folks here find intermittent fasting to be triggering. I’m just the opposite. If I fast 20 hours and then eat ketogenically, my migraine log is empty. If I eat processed crap, gluten, caffeine, sugar, booze - awful. I went into ketosis right after Thanksgiving to kill a relapse. Held it through Christmas. Made a huge difference for me.
In terms of light at the end of the tunnel. Very few of us here are regular visitors after two years. Those first two years after the VM diagnosis are awful - even for those of us who’ve had this our whole lives. After 16 med trials, ever possible lifestyle change, all the gadgets and supplements I found my groove. Botox every 10 weeks, Ubrelvy as a rescue drug, regular moderate exercise, and the diet above. It won’t be your groove. We’re all unique. But you do find your groove. VM doesn’t go away but it fades, and you live your life. I forgot; the most powerful thing you can do is work on acceptance. Life opens back up and you thrive again. Good luck our new musical friend. We’re a cool family here.
Hi hope you find some relief.
This place is a really good support when things are good and bad!
Like yourself I suffered from periodic migraines over a long period which seemed to manifest into something horrific about 5 years ago (I’m thinking menopausal linked) Since I started topiramate as a preventative in November I’ve been doing much better. i started the 6 Cs last year but found it made me mega miserable on top of everything else I couldn’t do! So After a few months I started to slowly reintroduce some aspects back in, I’ve found I can tolerate citrus and the other fruits, and some alcohol in moderation although I avoid red wine I drink white although I don’t really like it!. I don’t watch out too much for msg I don’t really eat much Chinese but I do use GF soy sauce at home - I completely avoid caffeine and cheese although I have just started eating reintroducing yogurts. I don’t eat much chocolate but I have the odd bit although not atm as I’m trying to be good. Exercise tended to bring on an attack- (although I’m working on that atm) and I have put on a lot of weight recently due to all of this and a change of job so I have been doing intermittent fasting for the last 10 days ish to try to lose weight (16/8) without any issues so far.
My MAV is very auditory linked, I get tinnitus and sometimes hear things that aren’t there, rather than light sensitivity I am very sound sensitive- being a musician I cannot imagine the frustration having the auditory issues must give you!
Thank you for sharing @Jools . I’ve had some menstrual changes lately that are “very unlikely due to any stress or chronic migraines”, so I’m sure this is a component.
It’s funny, sometimes being sound sensitive works to my benefit because I can pick up very quiet details in music others don’t notice. But in contrast, yesterday I was doing so good but made the mistake of slamming my car door and that was it for me. Threshold reached!
Honestly, this whole experience has made me pay more attention to myself than I ever have, in a good way. I never thought of myself as an anxious person as I’m very laid back. But realized I internalize a lot. After I experienced that pain from slamming my car door, my brain was spiraling into so many negative thoughts and stressful hypothetic conversations and situations. I caught myself and made it stop, but thought it was interesting once the pain started all of the stressful thoughts were next in line.
This week I’m starting to feel a good amount better, especially after a few days of VOR, vestibular, exercises. I’m really happy that my doc recommended the book Victory Over Vestibular Migraine: The ACTION Plan for Healing by Dr. Chin Beh. I found the exercises there along with progressions, and SO many details about things that Heal Your Headache did not have.
@ohsovertigo, welcome. I’ve edited your post for you so the internal link works. Once you gain a Trust Level (through positive engagement in the forum) you will be able to post links. This is an anti-spam measure. Thanks for your patience and understanding.
. I’ve always thought that was one of the main diagnostic differences. If you lose hearing it was Menieres if you don’t it was VM. Ask 
All of those amazing restaurants are going to hate me for ordering plain food, haha.