Valerie’s Vestibular Migraine Survival Guide

Valerie HewinsMy Migraine Blog, Share Your Story

Vestibular Migraine Survival Guide

“Don’t let this beat you down. You can and will survive it.”Valerie Hewins

The Journey

So, you have been getting vertigo, and you are beginning to suspect MAV (migraine associated vertigo)?

Getting to this point has probably been a long journey of doctor’s visits– you’ve ruled out the more common causes of vertigo. The Ear, Nose & Throat Specialist tried the Epley maneuver on you a few times, the Neurologist wasn’t quite sure what was going on, and the Physical Therapist helped you deal with the symptoms, but you still don’t understand the cause.

If you have not tried all the above options, please do– figuring out vertigo is a journey of trial and error, and the more things you try, the faster you are going to feel better. The Epley maneuver can be performed yourself– there are instructional videos online. Physical Therapy exercises, while not solving the problem, often help you deal with the vertigo on a day-to-day basis.

Additionally, if you are unsatisfied with any of your doctors, get a second opinion.  My Ear, Nose, and Throat Specialist changed his diagnosis twice in an effort to get more visits– i.e. more money out of the health care system.  My initial physical therapist did not have enough time for true care– on my first consultation visit, he was taking care of four patients simultaneously. The first consultation at the physical therapist should be one-on-one. You deserve and need good quality care.

After all of that, if no one can really figure you out, its time for other measures.

Step 1: Establish a rating system for how bad your vertigo symptoms are.

I used the following:

  • 1 – Little to no vertigo
  • 2 – Very slight vertigo
  • 3/4 – Shifting your head side-to-side makes you feel like you are on a tilt-a-whirl, but you can hide your symptoms enough that no one seems to notice
  • 5 – Turning while walking can cause you to lose your balance, and you start to worry others are noticing your disorientation
  • 6 – You feel drunk enough to fail the classic ‘walk the line’ test and driving is difficult
  • 7 – Walking around your house is difficult
  • 8 – You look at a pair of heels and laugh.
  • 9/10 – You stop even trying to walk around.

Step 2: Rate your symptoms after waking up and at the end of the day.

If your symptoms are significantly worse when you first wake up, consider going to a different ENT Specialist– you might still have an inner ear-related issue.

Step 3: Rule out hormones or medication.

Have you changed your hormone regiment in the last 2 years? Have you significantly changed other medication in the last two years? Are you pregnant? Can you change your hormones or medication back to a previous dose or medication?

At this step, I had been using Nexplanon for 1 12 years, but I had been experiencing other gynecological issues such as cysts and non-menstrual cycle bleeding. I scheduled a few visits to my gynecologist and switched back to The Pill. Coming off the pill alone decreased my vertigo symptoms by about 40%! (It also reduced the number of cysts I was getting.)

Step 4: Start exercising.

Ask your physical therapist about starting an exercise regiment under their care. Use caution – for some people, exercise (or sex, by the way) can make migraine symptoms worse. For me, exercise alleviates pain migraines, but does nothing for vertigo migraines.

Step 5: Minimize stimuli that causes migraines.

If light causes your migraines, get sunglasses. If loud noises are an issue, consider investing in ear plugs or avoiding situations that are too loud. If smells are an issues, avoid the specific smells that trigger episodes. Try to reduce your stress as much as possible. (I know I say that like it’s supposed to be easy, but I know in a lot of cases this feels impossible. Do whatever works for you and whatever you have time for– light upbeat music, breathing exercises, hot baths, hanging out more with your pets, mediation, biofeedback, medication, etc.) Do NOT minimize visual stimuli if you can do it without the symptoms becoming unmanageable.

Step 6: Schedule your sleep cycle and keep to it.

I had a lot of trouble maintaining a normal sleep cycle. I started using melatonin at night and improved the comfort of my bed by purchasing a better pillow.

Try not to nap in the middle of the day. If you do nap, keep it either 20 minutes or 60-90 minutes. Research has proven that naps between 30-60 minutes actually make you more sleepy, because they wake you up at the wrong time in the sleep cycle. (source: Wall Street Journal and Lifehacker.com)

Step 7: Keep a food and drink journal. Don’t skip meals.

The easiest way to keep track is to download either the Lose It app or the MyFitnessPal app.

Take special note of the following: Chocolate, caffeine, alcohol, sweeteners, aged cheese and other dairy, soda, and citrus products. Try temporarily reducing each of these or avoiding them entirely for at least a week. Use caution when reducing your caffeine intake, as you may experience a form of withdrawal that may initially increases headaches. (This makes caffeine more difficult to rule out.)

If none of these help you, you will have to go the more difficult route – watching the specific chemicals found in foods. Monosodium glutamate (MSG), nitrates and nitrites (found in processed meats),  tyramine, tannins, citric acid, other preservatives, and an unknown number of other compounds could be causing you an issue.

How I discovered citric acid as one of my major migraine triggers:

Personally, I discovered my issue with citric acid by noticing that on my worst days, the previous day I had either drunk fruit juice– usually orange juice, OR I had eaten out at an Chinese food place– grabbing the end-of-dinner orange slice. I decided to verify my issue by buying citric acid online and ingesting about two teaspoons mixed into 4 ounces of orange juice. I felt a bit wobbly initially, but the real vertigo didn’t hit until the next day. Then I had my answer.

The problem with diagnosing specific chemicals as an issue is that you find them in unexpected places. Citric acid, while found naturally in citrus products and some fruits, is also found as an additive in many products, as it is an effective preservative.  Some examples can include: soda, water flavorers, fruit juices, dried fruits, sauces, specialty mustard, candies, some Chinese foods, wines, cheese, bouillon cubes, effervescence, cosmetics, pharmaceuticals, and food coloring. Citrate salts, such as sodium citrate and calcium citrate are similar enough to also cause issues.

In summary, be vigilant. You can do this!

You will need to be vigilant, and read both your food packaging and packaging from anything you put onto or into your body. If, even after all of that, you can not figure out the issue, it may be something you can not control– such as the weather, or even long-term exposure to cats (caused by the parasite  Toxoplasma gondii, see the National Institute of Health).

I know this is frustrating, but know that you are not alone. There are people that understand how awful this invisible condition is. You are a great person. Don’t let this beat you down. You can and will survive it.

 
Valerie Hewins is an analytical chemist and My Migraine Brain contributing author. For questions or comments related to this post, you can contact us through our Contact Page, or leave a comment below. Thanks for reading!