The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

VM - what's working for me

Hi,

So I’ve been reading quite a bit about managing dizziness on this forum since VM onset about 8 weeks ago. Chronic dizziness can be such a frightening, confusing and isolating experience and these forums have provided much needed support and encouragement, so thank you!!! Anyway, I figured it’s time to stop lurking and introduce myself, and since I’ve had some success recently I thought it might be nice to repay the favour, and share what has been working for me.

I’m 39 and based in Melbourne, Aust. I had inner ear issues as a child (small perf. in my eardrum) and experienced a week-long infection-related vertigo attack after flying interstate 12 yrs ago, which was treated by antibiotics.

Since then I’ve also experienced occasional mini vertigo attacks of 60 secs or so (usually after cartwheeling), so when my VM symptoms onset after a winter virus (and a few cartwheels at the park) I thought I was dealing with inner ear crystals that were taking longer to re-balance… that was, until the dizziness went from a 2 to a 9 within a few days.

Internally I felt drunk/groggy all the time, and externally I was walking lob-sided, dizzy and lightheaded all the time, and swaying and rocking even when standing still.

After assessing my blood work - all normal apart from a slight Vit D def, and running through some neurological assessments, my GP diagnosed BPPV, prescribed Betahistine Dihydrochloride/Meniere’s Meds (3 x 16mg p/day) and suggested a few days on the meds should sort me out. If only.

It took a good a couple of weeks for the dizziness and balance symptoms to baseline on the meds but despite functioning better, I still felt awful physically, mentally and emotionally. It was effecting every area of my life.

I went to see an ENT specialist and after ruling out BPPV, assessing my hearing (slight bil loss) and taking my symptoms and history of chronic migraines into consideration, the ENT re-diagnosed VM and recommended I see John Waterston (a Melbourne Neurologist who specialises in VM). I haven’t seen John yet (I’m booked in for November) but armed with this new diagnosis, I started studying and exploring, and have come up with a recovery plan which finally seems to be providing relief…

I’ve been symptom free for well over a week now, have been able to return to the gym, start running again and get back into my yoga practice. I even took 4 kids to the Royal Melbourne Show yesterday - I was worried leading up to it but had a wonderful time.

So here’s what seems to be working for me…

Medication
I am still on Betahistine GH, but at a relatively low dose of 8mg, 2-3 x per day. Its enough to keep me at baseline even on ‘bad days’, and alongside the interventions mentioned below, much better at all other times. If things continue to progress as they are I will reduce even further over the next week or so.

Trigger Awareness & Remedies
Dietary Replacements:
*Replaced coffee with matcha green tea (1/2 tsp 2 x daily).
*Stopped drinking red wine (and other forms of alcohol).
*Reduced intake of chocolate, choosing cocoa butter or carob (rather than cocoa powder) based versions, i.e. Loving Earth ‘Caramel’.
*Replaced dairy cheese with vegan versions.
*Pink salt has a multitude of health benefits, so I do add small amounts of pink salt to my cooking at home, but make a conscious effort to reduce salty processed foods - even the ones in the health aisle!
*Drink tons of water (min 2lts daily) and additional herbal teas.
Environmental:
*I avoid fluorescent lighting, loud ongoing noise, wild weather, and chemical smells as much as possible.
*Offset ducted heating with plenty of fresh air.
Electromagnetics:
*I’ve reduced my hours at work to 24 hrs over 4 days, to make sure I’m not overstimulated visually - reading left to right on backlit devices.
*I take regular computer breaks and walk around at work.
*I minimise wifi and mobile use at home at night.
Stress & Tension:
*I use therapies such as massage, acupuncture, yoga and meditation to release tension from my upper body and neck area.
*A solid sleep is essential to how I feel the following day, so I go to bed as soon as I’m tired and no longer use a backlist device/phone in bed. I turn the wifi off in the house and turn my phone to aeroplane mode every night.
*Rushing in the morning is a massive trigger, so instead of rushing in the morning I wake up an hour earlier now and enjoy a relaxed morning routine.
*Take supplements to help with stress, mood and energy.
Other:
*Walking around barefoot wherever possible is helpful too.

Supplementation
BioCeuticals Migraine Care: includes B2 (200mg), B6 (15mg), calcium (347mcg), B12 (200mcg), magnesium (928mg), coenzyme Q10 (75mg), Feverfew (200mcg). My VM presents with occasional headache-like symptoms - a spasmodic tension-band compression around the top of my neck/base of my skull/back of my ears. I started with 2 Migraine Care tablets twice daily and have been able to reduce that to the recommended dose of 1 tablet twice daily, after the headache-like symptoms disappeared.
Vitamin D: orally + plenty of natural sunlight.
Magnesium: orally (via Migraine Care tablets) + magnesium oil topically behind the knees, in the elbow creases and occasionally rubbed into my upper neck/scalp when headachey.

Transcendental Meditation
This has been a TOTAL GAME CHANGER!!! While all the other points listed have been important factors in my recovery, it is only since I started TM a week ago that I have been symptom free and that groggy baseline feeling has gone. In just 10 mins per day, impressive levels of stress and tension can be released from the body and deep levels of rest can be achieved (a huge underlying factor I suspect for my VM onset). If you want to try it for yourself, download the 1 Giant Mind app. It’s free and whilst the daily sessions run for 15 minutes, the meditation portion of each session is just over 10 mins.

Anyway, I hope this info offers some helpful tips. And if there are any other lifestyle factors or therapies that are working for you, I would really love to hear about them.

1 Like

Wow, a bounty of tips here, thanks for sharing! I’m really impressed that you’ve come up with something so comprehensive that seems to work for you so well in just 8 weeks. From what I can tell (and from my own experience) it takes most people much longer to find something that works for them! I am going to check out the Migraine Care supplement you mentioned. I take three of those things separately, sometimes four, but it would be great to get them all in one tablet. And I will look into TM as well. My doctor recommended tai chi. It sounds like those two things might complement each other. Thanks for posting!

1 Like

Great to hear that you have relief for your symptoms!
Since, you were diagnosed with bilateral hearing loss and responded to betahistine, how was your ENT able to distinguish MAV as opposed to Menieres as a diagnoses?

I also have mild high frequency hearing loss bilaterally and wonder if MAV is really the culprit . I don’t believe betahistine is available in the states but I will ask my neurotologist about it.
Continued success on your regimen.

1 Like

Hi Nygal,
Apologies for the delayed response, I use a computer consistently in my ‘day job’, so I try not to spend much time on back lit devices at home :slight_smile: My original post in this thread took a while to type out and left me in a bit of a spin!
Honestly I’m not sure how the ENT was able to rule out Menieres so easily but I’m guessing that it might have to do with presenting with very minimal/occasional tinnitus and very slight hearing loss? I think (and again, I am not entirely sure) that they would typically see higher levels of these symptoms for Menieres?! Her connections between symptoms and VM though were plenty.
How are you going? How did you go with talking to your Dr about betahistine? I’m still taking a 1/2 dose [or less] daily, and whilst I still do experience occasional relapses, they are becoming increasing milder than they use to be and a lot easier to get on top of.
I’m off to my first neurologist appointment in a couple of hours… he’s an integrative professor so I’m hoping to gain a lot more insight.

My pleasure Miggyko, hope you’re having some success with your interventions also :slight_smile:

I have just signed up. I’m frustrated with my doctor’s. I have done all the MRI’s they have made me do and vestibular tests along with inner ear test. They said something in my inner ear is off and I have done the physical therapy again they told me to do. I have had this for almost 3 years. I was doing good on Amitriptyline 75mg a day and was able to drive and function and go to the gym. Since May I can not drive and not really work out. I do yoga at home and meditate and have done massage therapy. They did see I have scaring on my brain from migraines. I am on Verapamil now. Waiting to January to go see the doctor at UW in Madison at the headache clinic on referral. I will try some of your things that work for you in the meantime. I love my Starbucks. I do take B12 and iron and multivitamin. I would like to try the acupuncture.

Poor you. Over that 3 years did you have any clear periods of little or no symptoms? Have you been migraine free for most of it?

I was clear for 1 1/2 years with the antitripline. Was able to drive and function. I did not have the migraines as bad as I do now. They have gotten much worse. I will be changing my routine some until my doctors appointment in Madison at the Univeesity to see if anything gives me a break. All the meds they have tried lately have me me sick as in vomiting for days or out of it.

Hi Mary,

I’m on a trial of Nortryptiline for the past 4 weeks and it seems to have helped the severe motion sensitivity and visual vertigo. What’s interesting is that my ear symptoms, tinnitus, pain and fullness have been off the chart. Clearly, I think I am dealing with vestibular migraine which the Nort is helping and secondary hydrops , which the Nort is not helping. The bilateral loss, is disturbing…

Hi do ypu still check here i too am from melb did john waterston help you??