I feel like I’m struggling with slightly “disordered” eating. Thankfully, I still eat normally (I am just following the HYH diet right now) and am far from having an actual eating disorder, but I feel like all the information online that I’ve been consuming throughout the years about different diets and how seemingly all of them have helped get rid of migraines have just screwed me up. The more I try to eliminate things the more scared I am to reintroduce them again. Having 24/7 symptoms, it’s literally impossible for me to tell if I actually have food triggers but the fear of that food just will stick with me. For example, in June I decided to start HYH and gluten free and I honestly thought it was helping because in November I was feeling much much better, but then I started feeling bad again in like late December with no change to my diet. I don’t know what possessed me to stop eating gluten it’s not like anyone told me to do that , but I was just like what the hell I might as well try. I’ve noticed now though that I feel terrified to eat gluten again. It’s as if psychologically I have demonized gluten. This has been happening more and more with other food too like dairy, sugar, too much carbs, all the foods on the HYH diet. I feel like it’s so hard because anything could be a migraine trigger for anyone so now when my symptoms are 24/7 it feels like anything could be a culprit. I just feel terrified to eat anything because I feel like it’s the reason I feel bad. I dont know I’m just really struggling because I now always have a slight fear before I eat something which is very sad . I still eat 3 meals a day and try to just ignore this feeling because I know that not eating at all would be wayyy worse for me than eating any possible unknown triggers but it’s just so frustrating. Has anyone else struggled with this and what do you do to help?
My doctor said that actually a lot of people don’t have obvious food triggers. I tried cutting out lots of things and didn’t notice a difference. My big triggers are screens/lights, hormones, heat, jolting my neck (ie running, falling over), perfumes. It’s possible that I also have some food triggers but it’s difficult to tell given everything else (though I think that beer is a trigger). And it’s sometimes difficult to tell where one migraine starts or ends when you constantly dizzy. I don’t know if this helps. If you haven’t seen a big decrease in dizziness in stopping the foods then you probably won’t see a big increase if you start. Maybe try telling yourself that the worst that’s going to happen if you eat something is that you feel dizzier for a bit but at least then you’ll know it’s a trigger. Good luck x
Anna, I started to notice this psychological pattern myself when I started eliminating foods, and for this reason I’ve pulled back from the diet. As you said, with 24/7 symptoms it’s difficult to tell what’s causing what, and it really doesn’t make much sense to demonize food without a sound basis.
My approach has been to try to completely eliminate stuff that’s relatively easy - caffeine, MSG, alcohol, preservatives, chocolate- and otherwise just being mindful of the other food items which are known migraine triggers. What does “being mindful” look like? Well, for example, I love onions but will substitute shallots some of the time. I love tomatoes but I try not to eat tons of tomatoes for every meal, and I’ll avoid cheese whenever possible. I try to have 2-3 days a week where I don’t eat any known migraine triggers as much as possible. But overall I am just not super strict about items which are considered healthy but may be known migraine triggers (citrus, onions, tomatoes, beans, lentils, etc). Just keep a diary and see whether you can find obvious correlations with particular foods, and otherwise continue to enjoy everything in moderation (except for the items that are very clear cut migraine triggers & also not that healthy anyway).
I know it’s extremely difficult but I get better results (in terms of symptoms and emotional state) when I try to trust my body and my health. Like you, I got this illness when I was only 21 years old. I am now 31 and there was a nice 10 year period where although my symptoms were 24/7, they were minimal and I was able to live a very active, adventurous life, more so than many people without any vestibular issues. I was eating whatever the heck I wanted and drinking & partying probably too much, but it was fine. I bring that up just to emphasize that there often isn’t any large correlation with lifestyle or food and that your body can in most cases eventually figure out how to deal with the condition and minimize symptoms on its own & with medication. Think of dieting & lifestyle as just giving your body as much help as possible in maintaining equilibrium, but not a do-or-die situation. I’ve found that this helps me to enjoy life while being mindful, without becoming paranoid about each food and lifestyle factor. Your body is not fragile and, given a bit of help in terms of medication, diet, and lifestyle, it’ll feel better eventually. Every doctor I’ve spoken to has said there will be periods when it’s “flared up” and periods where it’s much better. Just trust that that will be your experience.
I sympathize. As an allergic person I didn’t eat some foods for about 30 years as I had active reactions when younger. And then, upon menopause, I could include them in my diet with no problem. Given those decades of restraint I really didn’t want to add on more prescriptive measures and I didn’t want to become the lady who lived in the bubble. So I decided a food plan of moderation could help with building up some resistance. Complicating this resolve was the debate in the medical world whether one was truly allergic to foods/pollens, or perhaps intolerant of substances, and/or ‘sensitive’ to foodstuffs, products, scents. Being one’s own detective is the best recourse. This includes a food/substance diary and the reading and interpretation of ingredients in grocery store products. Not for the faint hearted. Generally, I’ve avoided certain foods (needed to learn their chemical names), take allergy shots to reduce reactions to certain pollens (also found in the family of food), and practice preventative measures to lessen my physical reaction to pollens. None of what I discussed may be your migraine trigger, but I do hope you find your prevention measures and that the practice provides comfort and relief.