The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

I was diagnosed today and pretty upset, any advice?

For the last nine months, I’ve had vertigo basically every night, usually triggered by my moving position in bed. I’ve honestly gotten used to it at this point, but when I’m very hormonal it’s pretty bad, and I know my sleep quality is a lot worse than it used to be.

I’ve been to maybe five different doctors during this time, all scratching their heads. Now two have given me the vertigo migraines diagnosis, but with a sort of shrugging associated with it because I have no pain, light sensitivity, or auras. The doctors want me to work on triggers to see if I get any better. The big problem is, I already have IBS and my diet is so restricted already. Now I have to get rid of a lot of my “treat” foods, Chocolate, avocado, certain breads, nuts. I’m the most upset about the chocolate - it’s one of the only “sweet” things I can still have without reaction, and now I have to give it up :frowning:

I can’t decide which might be worse, giving up the chocolate, or knowing that if I give it up and it doesn’t work, then we haven’t found the right diagnosis. Part of me wants to just ignore it all and deal with the vertigo every night.

Any words of advice or support? Good replacements for chocolate? I know it sounds petty, but with an already restricted diet and stressful life in general I’m feeling pretty blue.

You have been given a Migraine Associated Vertigo so that’s one step in the right direction. I cannot restore your supply of chocolate I’m afraid but my thoughts might give you a bit of food for thought maybe….

Advice: in general terms this condition is difficult to control. Left untreated and most particularly amongst hormone related cases in females it tends to just go on getting worse. Chocolate and Stress are main triggers. Best advice is to follow the proposed treatment plan and get on top of it as soon as you can. The Migraine Elimination Diet is often the first step on the journey. It is not ‘for ever’. Should only be for a short period of time, four months maybe. Doctors should have told you that. You need to ask for further clarification alternatively read through all the Welcome Wikis on here and then go through the members recommended products and select a book, buy it and study it. The more you learn about the condition the better you chances of handling it successfully. If it helps to strengthen any resolve I’ve read the elimination diet alone works for a small percentage of people without any other intervention.

You are most welcome to this site where you will find many others with IBS (the two regularly occur together) and them and many others with other conditions all of whom have to suffer restrictive diets apart from the Migraine one. Some find the diet actually helps both conditions. There are even other treatments which are basically diet plans, such as Keto, Paleo, which are used by some for MAV control although they are not to be confused with your current option of a Migraine Elimination diet. They are a different approach. Chocolate is a known major trigger for many, me included. Never touch the stuff. Haven’t for years but that alone hasn’t stopped my MAV.

Btw if you do follow the diet and it ‘doesn’t work’ (although I’m not sure exactly what you have been told it ‘working’ should mean in practical terms?) that is no guarantee that you have been given an incorrect diagnosis. The diet not helping won’t prove anything in itself except perhaps that you are person as is the majority that need other interventions either in addition or instead. Unfortunately there is no definite proof of diagnosis with MAV. It remains a diagnosis of exclusion.

Re-reading your post and putting the lack of chocolate to one side are you able to accept your diagnosis? If you have no confidence In it you need to press ahead to see a better informed specialist as soon as you can. Somebody you can believe and work with. Have you been assessed and if necessary treated for BPPV. One would imagine your own doctor would have assessed you for that immediately on hearing your main symptoms. So think. Do you feel you need to see a true specialist?

One final thought. If because of your IBS restrictions you have been eating far more of those now to be forbidden fruits etc over some period the higher concentrations resulting could just possibly have tipped you over the edge into the hypersensitive state that is MAV so the diet might really be your answer. But you’ll never know til you try.


Give the diet a real chance to work. You might find it fixes some of the IBS, too. Like Helen said (@Onandon03 ) some diets work better for some of us than others. Mileage varies tremendously. I’m better when I’m in ketosis. I’m ok with chocolate if it’s very dark. Can’t get near other stuff that’s on the diet plan. Caffeine and sugar are major dietary triggers for me, as are gluten and nightshades. Don’t think of it as not getting your treat. That’s victim thinking that keeps us in a state of childish outrage. Been there. Working hard not to do that (or sometimes just accepting the consequences). Instead, recognize your body has placed some hard limits on you and is asking you to take care of it in the way it needs. After a while you learn to work with your own needs and generally feel better in ways you don’t expect. Also, VM sucks most the first couple of years. Then you just crack on with life.


You could try carob. If you like baking, you could use carob powder instead of chocolate, for example. Or you can make a hot carob drink.

As others have said, eliminating potential triggers is not for ever. I eliminated tea, coffee and chocolate for about 4 months, then I reintroduced them. I find that I am fine with chocolate (in moderation of course) and one cup of tea (green or black) 3-4 times a week. Coffee did not agree with me, I felt sick after it (but not dizzy), so I stay away from it for now.

Welcome to the forum, you’ll find lots of useful information here.

1 Like

Give the diet a red hot go. I’ve eliminated caffeine and alcohol completely. And only have a tiny bit of chocolate every now and then.

Caffeine was my vice. So addicted. But I’m better off for it.

I’ve heard white chocolate is ok if that helps.

1 Like

Don’t let it upset you. Many of us went years without a diagnosis. It took five years for me.

When I was first diagnosed, I eliminated all the food triggers only to find that none of them were an issue. So keep your chin up and keep hope in your heart. Just because chocolate is a known trigger doesn’t mean it’s a trigger for you.

Find your trigger(s) before you get upset. Mine were environmental. Stress, certain fluorescent lights, barometric pressure, sleep disruption. I’ve eliminated all of them except the sleep problems and I’ve added Topamirate that helps with the symptoms. The result is I have gone from two to four attacks a week, to one attack in the last three months.

Oh, and as for chocolate? I eat it anytime I want.

There is always hope, so don’t let this thing get you upset.

1 Like