Frequently Asked Vestibular Migraine Questions

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most frequently asked vestibular migraine questions

As this site grows, I receive more messages and emails from readers asking similar vestibular migraine questions. I thought I would combine the most frequently asked questions on migraine into a post that would provide an easy reference. If you have any other questions – add them to the comments!

What are the supplements you take and what time/how often do you take them?

I take these daily:

When I get an attack I take:

I can’t swallow pills when I’m nauseated or at all. What do you recommend?

There’s a company called Bulk Supplements that makes really clean powdered products you can mix into anything.
Magnesium Glycinate
B2 (Riboflavin)
CoQ10

What medications do you take?

When I was first diagnosed, I needed medication to break that 24/7 cycle. I did a low dose of ativan (lorazepam) before bed and timolol malate eye drops (a low dose beta blocker) 2x a day as a preventative. Since I am trying to conceive, I currently just use timolol malate eye drops as an abortive medication when I feel my dizziness kick up. My OB has approved this during pregnancy. Please check with both your OB and neurologist before taking anything while pregnant. Your OBGYN should be able to give you the best insight over your neurologist.

Many neurologists are not familiar with timolol eye drops as an abortive or preventative for migraine. I find it helps if you print these articles for them to review in your appointment. The studies that have been done are very small, but positive. You can read my experience in this post.

Previously, when I took an overseas flight or had a very bad attack – I use 1/4 of a 2mg valium tab.

Benzos are addictive – were you scared to take them?

I trusted my doctor and knew I was in good hands – he made sure I was 100% comfortable with my treatment plan. Some of the best Vestibular Migraine doctors have defended them as being great source of relief. Research from Dr. Timothy Hain has shown that the extremely low doses that would be prescribed do not hinder compensation in vestibular patients – the research showing this was when benzos were given at much higher doses. It’s important that you are careful and only take them as prescribed, and be honest with your doctor if you are nervous. The following is from Dr. Shin Beh’s paper on Vestibular Migraine.

“In our experience, benzodiazepines are more efficacious vestibular suppressants compared to meclizine. We prefer to use diazepam for episodes lasting 2-3 hours, and lorazepam or clonazepam for longer attacks; alprazolam is too short-acting and may cause addiction.”

Do you ever get attacks now?

Yes. My dizziness definitely increased when I was pregnant in November-December. Just a few days after my miscarriage, my head returned to normal. Sometimes I wonder if I will have trouble with pregnancy in the future, or if that was an early sign that I didn’t have a healthy pregnancy. I’ll never know for sure. Since then, I did not have an attack till I got sick with bronchitis mid-February. The nice thing is that my attacks are quick, rarely lasting more than a day. I do feel dizziness kick up after intense work outs, an interrupted sleep schedule, or a day of indulging in too many food triggers and/or alcohol. If I manage my attacks well, I feel completely normal.

Wow, you got better so fast! I’ve been feeling this way for a few months/years now.

It may seem that way now, but I was 24/7 dizzy with so many weird symptoms for over a full year. Much of that time was spent searching for a doctor and making changes to my lifestyle to see what worked and what didn’t. I did not start having 100% days till I had been on the right diet, supplements, medications, and lifestyle changes for over a year. So really, it’s taken me almost 3 years to get where I am today. It’s not impossible, and some people take longer or shorter than others so try to not compare yourself to my journey or others. It’s all about finding that right combination for you.

Do you ever cheat on the diet?

YES! Here’s the thing – one cheat meal will not derail your progress. But if you’re doing it regularly, like once a week, it definitely isn’t helping you. If you’re chronic and have the 24/7 symptoms, you’re only hurting your progress. When you start feeling better and have more breaks in that pain or dizziness, you can get away with a lot more. When I was chronic, I only cheated for vacations or special occasions, and in very small amounts. I also cheated one time 2 months in when I thought the diet wasn’t working, but it actually was – HA! Now I can very loosely follow the diet (I like eating additive and MSG-free), but I avoid my big triggers which are caffeine, yogurt, and certain nuts. Every once in a while I like to test them to make sure they’re still triggers…except caffeine.

How do you handle the anxiety?

Once I got my Vestibular Migraine under control it helped SO MUCH with the anxiety. I went from being fearful of walking outside (or walking period) to driving again. I did have to learn to drive again. That sounds weird, but highways bothered me for a long time. I find the dotted lines in the road and the poles for the HOV lane super dizzying. The more I did it, the easier it got…sort of like vestibular therapy. I do still avoid driving in rush hour because it makes me nervous, I find it difficult to turn my head quickly to avoid the crazy drivers around here. A side view camera on my car helps with merging.

Occasionally I get some anxiety with parties and loud restaurants, but I know that nerves can also increase my symptoms so it’s better if I just calm down. Simple breathing techniques help. Concentrating on your breath, breathing deep, holding it, then releasing it can make all the difference with just a few breaths.

I saw a counselor in the beginning of my diagnoses and I highly recommend finding one you like. This illness is a lot for even the strongest people to handle. Sometimes we need help or an unbiased person to talk to, and that’s ok.

Is there a Dizzy Cook cookbook?

It’s estimated to come out February 2020 with West Margin Press! I’m finishing writing it now I just finished writing the breakfast category. Since I am taking all my own photos too, it’s quite time consuming! I hope you’ll forgive me for slacking on posts here as I want this to have the very best recipes. If you join the email list, I’ll be posting glimpses of what I work on in there.

What did you do before Dizzy Cook and did you quit your job because of vestibular migraine?

Before this I was a product manager for a brand called Michele, under the Fossil corporation. I worked on the development of all the watches and straps, pricing, sourcing, etc. In a way, it was fun and I miss certain things including some of my coworkers. It’s difficult to leave a career behind and not know what the heck you’ll do with your life, especially as someone who was always career driven. I had other issues with my job besides just my illness, and I had them long before I got sick. In fact, a part of me feels like my VM was triggered by years of stress from being unhappy with my workplace. Sometimes I blame myself for not leaving earlier but hindsight is always 20/20.

The illness brought all those issues I tried to bury to the surface. I could no longer ignore them when my company made it incredibly challenging for me to manage a chronic illness while working. From what I’ve seen, companies either value you and your time and make accommodations to keep you around, or they make it really hard on you to force you out. Mine was the latter.

If there’s one thing I could tell the old me, it’s to speak with a lawyer the second you file for FMLA  (or even before you officially file). Most first consultations are free and you can learn what to look out for. There are certain things your company is and isn’t allowed to do to you while you’re on FMLA and mine did a lot of them, which I now realize after speaking with lawyers. It was always a red flag when HR would call me on the phone instead of emailing me back, or if they wanted to speak in person. Take these cues and pay attention. Do not trust HR. They are there to protect the company, and are not on your side no matter how nice they appear.

In the end, my pay was cut significantly (and I was hardly making much to begin with) so it wasn’t worth the conflicts I continued to have with certain coworkers and HR. I’m happier now, but it took me a very long time to accept the fact that my life didn’t go the way I thought it would.


Did you find these FAQ helpful? I’m thinking about doing them maybe once every two months as there are too many good questions to put in one post.

This post contains affiliate links. 

Alicia was diagnosed with Chronic Vestibular Migraine in 2016 and has been able to successfully manage her symptoms through medication, supplements, lifestyle changes, and the Heal Your Headache Diet by Dr. David Buchholz from Johns Hopkins. She's the owner of The Dizzy Cook.

12 comments

  1. April

    How do you take the ginger? What type of doctor do you see now? Neurologist? ENT?

    Reply

    1. Alicia

      April, all great questions! I’m currently writing a post on ginger so will have that shortly, but I talk about it a little bit here: Natural Treatments For Migraines

      I see a neurologist who specializes in Vestibular Migraine, but I highly recommend a neurotologist or calling around to see if a particular ENT, neurologist, etc. specializes in vestibular migraine (or at least knows about it). I was originally diagnosed by an ENT at the Mayo, but he admitted he couldn’t help me with a treatment plan since it was out of his realm. Many of the ENT’s and neurologists I saw before him never mentioned it. Websites like vestibular.org can help as well as getting recommendations from members in support groups.

      My triggers are yogurt, most nuts, and caffeine. I used to have more, but some of my lower triggers like avocado have not bothered me since I’ve been feeling better. So it’s important to test them every once in a while unless they truly knock you out (like caffeine for me).

      I was following the diet somewhere between 4-6 months before I really noticed a huge difference and had longer breaks between my dizziness. However, I didn’t notice a difference after two months and got fed up with the diet. I decided to try yogurt one night and my dizziness went from just that annoying fuzz in the background to full on vertigo. I then figured out that maybe it was working and I should stick with it a little longer. 🙂

      I’ll add these to my next post and write in more detail!

      Reply

  2. April

    Also, I am curious what your triggers are? How long did you follow the diet before you saw results?

    Reply

    1. Alicia

      Hey April, My food triggers are yogurt, nuts, and caffeine. I never reintroduced MSG or additives like carrageenan just because I think it’s better to not have it anymore. My other triggers are long days of travel, like in the car on on really long flights, dehyrdation, and an interrupted sleep schedule.

      I noticed that yogurt was a trigger about 2-3 months in when I tested it and my head went crazy, but didn’t notice huge changes in everyday symptoms at the time. It probably took me closer to 5 months to really have dizzy free days. I hope that helps!

      Reply

  3. Akash

    Thank you for sharing some of the wonderful insights on migraine and sharing your real life experiences. You have done a great job by posting this article and answers on most of the frequently asked questions on migraine. Will definitely share this to someone who wants to more about migraine and remedies to get relief from the same. Cheers!!

    Reply

  4. Arles “Bugs” Graham

    Alicia,
    I am 69 and new to VM, diagnosis 4 months ago. This was after being misdiagnosed with inner ear issues for 8 years, sinus surgery, allergy shots the works to no avail. My trigger is weather. I lived in Nashville, 54” a year of rain, except no rain in summer (go figure). I moved to dry west Texas in June of 2018 to try and get some relief, it helped during the summer drouth. The in the fall it rained and rained, my new ENT ran some test and to my surprise said I have Migraine. To his credit he did refer me to a Neurologist, in San Antonio. It is such a blessings to find The Dizzy Cook Site. The Q&A answer all of my questions regarding supplements. I originally asked my Dr about different types of magnesium and he said they are all the same. I knew better as I had worked for a for thinker animal health company in ‘90 and we did some early work on organic minerals and developed a love of chelated minerals. Tests clear showed better absorption by the cells in the body. I look forward to the cook book. We have ordered the recommended books. The World Migraine Summit started me on a trail of life long knowledge and Hope!
    Thank You Alicia
    Bugs Graham

    Reply

    1. Alicia

      Hey Bugs, I’m in Texas as well and the changing weather is just so hard on our heads sometimes. I’m thankful you found me as well and so glad you enjoyed the Migraine World Summit this year. Hope to hear back from you that you’re doing well with some of these tips!

      Reply

  5. Emma

    Hi Alicia,

    When you talk about the fuzz in the background above, I find that I still have this pretty constantly. Did this also go for you as well as the vertigo attacks? I have never had full on vertigo thank goodness but constant swirly head from waking (sometimes wakes me in the night too if i have tossed and turned in sleep) and wondered if this also cleared up for you and after how long?

    I switched from HYH to keto after trying HYH for a few months with little improvement but my dizziness has actually got worse on keto I think, so maybe I am tyramine/histamine sensitive after all rather than to the carbs..

    Thanks so much as always. Love your blog 🙂

    Emma

    Reply

    1. Alicia

      Hey Emma, This was actually one of my last symptoms to go and it was really my main symptom as I never got the vertigo attacks very often. It started breaking up when I took preventative meds, supplements, and especially with the diet. It probably took about a year to have breaks and then another year to get to 100% days, but even now I get it occasionally and it lasts maybe a few hours. I actually love the Cognimag for this though and about half the time I feel it and I’ll take 2 and it fades away.

      I do have a few friends that do HYH/Keto if that’s something that interests you…might be tough! But I can have them give you some tips too. 🙂

      Reply

  6. Emma Hargreaves

    Thanks Alicia,

    I think I will try the HyH diet for a bit longer before trying to combine both diets as I’ve read that it took you more than 4 months to feel better so maybe I didn’t give it enough time. Also when I changed into Keto for a while I added straight back in bits, avocado and smoked stuff etc so maybe I added these all back in too soon?

    Did the cogni mag help with your constant floaty sensation? I don’t tend to get brain fog just the swirly feeling all the time?

    Thank you x

    Reply

  7. Bridget

    I have to say: I just love you! I’ve been dealing with this nonsense for just over 6 years now. Mostly I’m good but sometimes I fall into a rut of headaches, lightheadedness, severe brain fog, floatiness and short bursts of vertigo when laying down. I’m single and work 2 jobs….I’m tired. I’ve had the HYH book for a few years now and it’s about time I just do it! I’ve started looking at your website and I absolutely love how you’ve put everything from the HYH book into such easy detail. Thank you so, so much for creating this site!!

    Reply

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