Hello! I am one year into my VM journey. My VM is chronic, not episodic (meaning I have near daily symptoms), but punctuated and intensified by regular acute BPPV episodes. I was diagnosed about 6 months ago with VM and have been on a strict HYH diet since. I noticed an immediate improvement in symptoms when I began the diet, which leads me to believe caffeine was a primary culprit. When I introduced swiss water decaf coffee after about 3 months, I had an acute BPPV attack 2 weeks later, so I don’t think I can handle even trace amounts of caffeine.
My other triggers are sleep (which I can’t control, having two young children) and my cycle (which I also can’t control). I’m on propranolol and nort, slowly titrating up, and a boatload of supplements. I’m still not feeling great. Most days, I have symptoms. Either I sleep poorly (child waking) or I’m close to my period, or some other inexplicable reason.
My question is this: I really, really, really, really want a less restrictive diet, but how can I reintroduce anything when I’m still so unstable? There would be no way to tell if that ingredient is a trigger, when I already feel symptomatic much of the time. Right?!
Or, perhaps, should I go more restrictive? Take off the things that are listed as “triggers for some” like mushrooms, tomatoes, coconut, gluten. I eat a lot of tomatoes. And bread. Like, maybe I’m still eating something regularly that is a trigger for me.
As an example: I felt poorly the other day, even though I’d slept well and wasn’t near my cycle. I thought back to what I had eaten, and realized I’d had a spoonful of mayo that listed lemon juice as an ingredient the day prior. Usually I’m more vigilant than that. Could that small amount of citrus trigger a migraine? Or perhaps it was just one of my random symptomatic days.
My triggers are sugar, caffeine, dairy and gluten. I’m allergic to eggs and tomatoes and sensitive to legumes. I have otherwise no triggers from any of the various lists. Some neurologists put no stock at all in the diets. Not helpful, I know. I feel best when in ketosis. I can only argue you should keep a regular symptoms log with diet to try to look for patterns.
Oh no, sad you have to deal with this too. Everyone is different I’m afraid. I personally don’t have any food related triggers, but I’m off caffeine and alcohol entirely and try to minimise msg.
I’m interested in your BPPV episodes. Do you do the Epley when you have BPPV? How often do you get it? Also, have you checked your vitamin d and calcium level as deficiency in these have been found to trigger it.
As @flutters so rightly says any neuros (the majority in the U.K. I guess) place no stock at all on diets. Indeed I have been told by several doctors and a migraine specialist neuro they are a waste of time and not to bother. Caffeine, chocolate, red wine, cheese, citrus fruit, MSG may well be worth avoiding. I have done that many years. Dr Hain suggests cutting caffeine out, alcohol, MSG and anything you personally feel you react to. It’s easy enough to drop one item at a time longer term. Most diets are overall restrictive and vitamin deficient used indefinitely. However as you have tried a strict HYH diet and seen improvements why stop now? Anything that helps surely? Need to remember however that Stress is a huge trigger so you need to weigh up the pros and cons. Is the stress of following the diet outdoing any benefits? Only you will know the answer to that one. Think it through.
Another point I would raise would be to mention triggers are culmulative so you would, as Em suggests need to keep a detailed log. Personally I have never been able to positively identify any additional found triggers to those I have known since my teens because of the complexities listed above. I find whenever I suspect a food trigger either there are alternative food culprits or equally probably environmental triggers which could just as easily have been the cause. Or of course it could be cumulative which could well mean I would have been fine eating the pickle if only we hadn’t had that torrential rainstorm on the same day. Impossible. And worrying about a tiny drop of lemon juice in a spot of mayonnaise rather proves to me as a young mother getting little quality sleep you are putting yourself through far too much unnecessary additional stress.
Step back. Look at the bigger picture. Destress and let the meds do their job. Get comfortable with the diet. Don’t expect to be perfection with it. Accept your cycle and current circumstances with ongoing interrupted sleep may make things settling take longer and live in the moment.
True, but if you are symptomatic all the time even with a migraine diet, then it proves diet alone is not going to save you, right? In your case wouldn’t obsess too much with the diet if you’ve given it a good go for a while. I followed it 100% for the first 3 months then 80% for a year or so to get most of the benefits without becoming obsessive. The majority of my improvements came with combos of migraine medications and treatments such as the Cefaly device.
MSG / caffeine / nuts / eggs / alcohol were fairly strong triggers for me, but its all difficult to sort out and I could have been wrong about some of them. These days I seem to be fine with nuts and even some alcohol.
Yes, I do the Epley. And other maneuvers. I’ve had classic BPPV since I was 22. My episodes back then were cut and dry–turned over in bed, got the violent spins, did the Epley maneuver, all was better.
This February, my BPPV didn’t resolve so nicely. I felt awful afterwards, even though the violent spinning was gone. Eventually I was diagnosed with VM. I haven’t felt 100% since. And the line between BPPV/VM has become a little fuzzy. I do a “preventative” Epley or liberatory maneuver every week as recommended by my vestibular therapist.
This is great advice. Thank you! And yes, it is IMPOSSIBLE to figure out exactly what causes me to feel crummy, even when I’m following the diet, because I could still be eating a trigger that’s uncommon for most. And…sleep, weather, my period, etc, etc. I just need to trust the process. Easier said than done.