Learning to accept vestibular migraine

[corgimom]

I’ve been lurking for a long time, but finally decided to make an account and join the conversation! Y’all can call me Joanne, and like the username suggests, I’m a proud corgi mom

I was diagnosed with vestibular migraine around this time last year at the age of 28, but it’s taken me a long while to fully accept both my diagnosis and how it has affected my life. By the time I saw my third ENT, I was convinced I had MS, so hearing that my symptoms were actually from a form of migraine didn’t seem right and my doctor didn’t really have much information on VM for me. It was actually after finding this forum that I started to understand that “migraine” is much more nuanced and complex than I had believed.

I’ve been on 10mg of Nortriptyline for a year now, which has helped reduce the number of bad days and minimized general dizziness. The biggest trigger I’ve found has been stress, and changing jobs earlier this year was a big relief for me, as I was in an extremely toxic environment and worked in a high-rise building with an open floor plan. Not having to deal with gaslighting or commuting an hour each way anymore has been fantastic.

Now that I’m out of that toxic job, I find my worst symptoms are brain fog and feelings of derealization. Has anyone had any success minimizing these symptoms? It’s been a struggle coming to terms with the fact that I can’t do everything I used to be able to even after reducing the dizziness and vertigo, and some days my brain just feels totally fried. I’ve been looking into going back to taking supplements and adjusting my diet, but my partner has some gastro issues that don’t mesh well with the HYH diet so still thinking through some ideas there.

Thanks for reading!

[dizzy3]

Hi!
Quick answer, what I´ve come to understand is that this is as if we have suffered a concussion or brain injury. It takes time to heal but eventually we will heal. The derealization was one of my first symptoms to go, the brain fog comes and goes, specially if I am super tired. So I just try to balance activity with (mental) rest throughout the day. Acceptance is a big step into recovery. Plus you have age on your side.
In terms of diet, avoid the main offenders, wine, cheese, chocolate, coffee (I actually drink 1 cup of half decaf/half caffeinated a day and I am totally fine), and don´t fret about the long list. Physical activity is also key, so don´t forget the good walks.
Glad you decided to join and introduce to us.

[flutters]

Welcome Joanne!

Have you considered increasing the dose of your medication?

Emily

[corgimom]

Thanks for the welcome, y’all!

I’m thinking cutting down cheese and chocolate would be a good start. I love aged cheese and realized I’ve been having a little bit of chocolate basically every day since quarantine started

@flutters

Have you considered increasing the dose of your medication?

My doctor asked me about this back in March, but that was after I had changed jobs and was feeling great. Might be worth bringing back up now, although I worry about the sleep-related side effects.

[flutters]

There are other meds that aren’t sedating. Maybe adding a small dose of a second med might get you there. It’s all trial and error and there are a lot of options. It’s annoying and time consuming but worth the effort.

[Onandon03]

Hi Joanne

My first words exactly mirror @flutters have you thought to increase?

B y all means accept that you have the condition. Great because so many dare I say of the younger sufferers find that so hard but don’t accept that you have to live with constant symptoms (brain fog etc). Preventatives should prevent if taken at an effective dose. As @flutters says you need to increase the meds and try to control those for almost all of the time. Either increase, change to another or failing that doing the trick add in. Implement the diet whole heartedly. Unfortunately that means cooking for Two. Cooking differently for two. It would be totally unfair to expect a partner to suffer the deprivation and totally unnecessary. In the house I live in it would certainly be firm grounds for divorce. I fully appreciate the extra work involved doubly so because before I hit a migraine diet I was long-term low fat diet so I am going round second time already . Caffeine should go and chocolate. So many years since I tasted chocolate I have forgotten it even exists. Cheese too though I must admit there is aged and aged. Anything blue which I always loved will finish me off but most others are fine. So as you see it all comes down to the detail. Time consuming and hard to start but Long-term the benefits will outweigh.

Btw I was once a Corgi Mum too. They are almost extinct here in UK, even our Queen doesn’t have one these days.

[flutters]

Fear not, love. The US is full of sawed off little fluff ball corgis.

I also cook for two. And I love blue cheese which has long been banned from our house because, as my dear husband says, ‘the warning is in the name’.

[corgimom]

I’m doing some research to find some recipes that will work for both of us, but it may just come down to having to have separate meals at least some of the time like you said.

Yes, there are definitely lots of corgis here in the US! I know in California they have a corgi beach day with tons of them.

[flutters]

Check out the dizzy cook. https://thedizzycook.com/

[corgimom]

I actually just picked up her new cookbook! It looks like she has some different recipes on her site too.