Diet question

Hi, I’m the wife of a MAV’er (seen elsewhere on this board - he’s fairly new, called Furnok).

Anyway, Furnok is trying the diet, he tried it briefly last year too with no change, but we thought it mightn’t have been long enough - only about 2-3 weeks. (FYI His current episode has been controlled to varying degrees with medication since Dec 2010 - this was his post http://mvertigo.cloudapp.net/t/hello-new-to-the-boards-and-a-question-or-two/3837). Anyway, my question, for those who found the diet helped, how quickly did notice a difference? And if you did notice a difference, was it an improvement whilst ON the diet, or was it an exacerbation of symptoms when trialling foods again?

For those with 24/7 vertigo, I guess I find it tricky to understand how the diet will make a difference. Plus every specialist we’ve seen here in Melbourne (Waterston, Symmington, Heywood) has said not to bother with the diet. Plus we have an extensive list of dietary restrictions in our household as it currently stands, even before we add the MAV diet into the mix, hence we really don’t want to follow it endlessly for months unnecessarily. But of course on the flip side… anything we can do to help, we want to try!

TIA,
Belfie

Hi Belfie,

I’ve seen both Drs Halmagyi and Granot in Sydney and both dismiss dietary triggers (and make Scott very, very cranky by doing so). Halmagyi suggested avoiding red wine and MSG but that was about it.

If my migraine threshold is low I find caffeine and diet fizzy drinks (eg Coke Zero) can make me noticably jittery and anxious but don’t bring on ‘a migraine’ as such.

Anecdotally a lot of people on the forum do have quite clear migraine food triggers. Annoyingly it can take a lot of trial and error to identify them.

If a food is going to bother you I think it’s reasonable to expect that it would do so within half an hour or so.

Hope that helps!

— Begin quote from "Victoria"

If a food is going to bother you I think it’s reasonable to expect that it would do so within half an hour or so.

— End quote

Well this statement confuses me. Did the dr. tell you that? Im confused because if you go online to various migraine sites, it says that its common to have a food strike up to 48hrs later, and at times, it can be something you ate a week ago. This is why Im not trying to challenge food triggers, its damn near impossible if its up to 48hrs later…

K

Hiya Belfie

I’m one of those who couldn’t get on with meds at all, tried loads but none helped, so finding the diet info in Heal your Headache, was a life saver for me. I’m trying to think back but it’s difficult to be exact about the time scale but I would say, for me, it probably took a few months to feel the full effects. It was more a gradual improvement than a sudden stopping of symptoms. And some foods didn’t show up as possible triggers til after two, three, even four days, which made trialling extremely tedious and longwinded. But that was the pattern with me. Very rarely could I identify cause and effect immediately. WHEN I ate and HOW OFTEN was a factor too.

Brenda

Thank you both so much for the replies! I had started to wonder if no-one actually had gotten a benefit on the diet. A chiropractor the other day suggested to us that the diet is no point, but avoid any triggers that you know you have… seemed a bit of a silly recommendation to me - isn’t the whole point to try and work out if you have additional triggers that you hadn’t realised?

Interestingly in my husband’s case, he has previously (many years ago) done an elimination diet for IBS and then he reacted to sugar, sulphites, benzoates, bacon (i’m assuming the nitrates), oranges and MSG. He was also dizzy as all hell for the first week of the elimination diet (even though we didn’t know he had MAV then, we just knew if that if there was anything physical wrong i.e. flu, then he always got dizzy as well). He was also having a few coke zero’s about a month or two back and I thought that made him worse too. So there certainly seems to be grounds to try it. We haven’t actually got heal your headache yet - really must do that. So saying, we’ve found excerpts listing the diet information but what I hadn’t been able to find out was the information on how long & timing of trialling of foods. So if you brought back in one banned food group every 3-4 days, it really would take a while!

How do you manage with eating out? I can’t imagine you’d be able to if you were being really strict - particularly in regard to the vinegars and things like that. And this question is particularly for you Brenda - out of curiosity, do you think following the whole diet in general helped more rather than it being specific foods here & there that contributed to your load?

Thanks,
Belfie

— Begin quote from "Kristina"

— Begin quote from "Victoria"

If a food is going to bother you I think it’s reasonable to expect that it would do so within half an hour or so.

— End quote

Well this statement confuses me. Did the dr. tell you that? Im confused because if you go online to various migraine sites, it says that its common to have a food strike up to 48hrs later, and at times, it can be something you ate a week ago. This is why Im not trying to challenge food triggers, its damn near impossible if its up to 48hrs later…

K

— End quote

It was in discussions with one of our mvertigo members who is a PdD in the nutrition/food science area.

I imagine one would have to be super strict with the diet and then reintroducing foods to be able to assess trigers a week after ingestion. And controlling for any number of other possible triggers (non dietary), let alone chance would be extremely difficult.

One of my doctors who is also a migraine sufferer himself dismissed the diet. He said that clinically it just doesn’t work in his experience. But, because I was so desperate to get better, I tried it and was very strict with it. It didn’t help me at all, but neither are meds, so maybe I am just someone that just won’t respond to treatment. It’s worth a try I suppose as you never know what can help you. Heck, I would stand on my head if that would help me at this point.
Christine

Hi Belfie,
I spent almost two years on a very restricted diet, the second year on what my doctor at the time termed the ‘caveman diet’. It was super restrictive – no gluten, no dairy, nothing processed or tinned, nothing fermented, no sugar, no legumes, no alcohol among the restrictions. It was mainly fresh proteins, fruit and veg (although there were also restrictions on what fruit and veg I could eat, eg no potatoes, no cucumbers, no citrus, no apples). I stuck to it so rigidly for a long long time, and to be honest it made not a jot of difference to my condition (and I felt less than human to not be able to enjoy eating and to spend so much time and thought on what I could eat). I tried this even though Dr Waterston (who is also my neurologist) said he didn’t believe that diet played a role on this. I was desperate to find a ‘cure’ so I tried the caveman diet. I know it’s different to the migraine diet, probably being even more restrictive, but it didn’t work for me. That said, I know I have a few food triggers that make me feel bad – I can’t tolerate any alcohol, and highly processed sugars (eg boiled lollies and sweets) are no-nos for me. What made a difference for me was VRT at Dizzy Day Clinic in East Melbourne (that helped a lot with the visual vertigo and some of the other weird head sensations, eg a lag in my vision whenever I moved my head and the feeling I was always looking through a fishbowl), which helped me improve about 30%, and taking Prothiaden, which took me to about 85%.
But there is no harm in trying the migraine diet, as this condition is different for every individual and it may help your husband.
Good luck!
regards,
Helen

Forgot to mention too that like Brenda, when I eat makes a difference to how I feel. If I go too long without food (especially a decent protein), my blood sugar drops and I feel awful. So I try to ensure I never get too hungry as that’s bad news for me.
As far as eating out while on the caveman diet, I was able to request really plain things, eg steak with no sauces and a salad with just olive oil, or steamed fish with no sauce, steamed veg and steamed rice. I would tend to go to restaurants that I knew could cater for me, and it was always helpful to call beforehand and explain that due to a low-allergy diet I had certain food restrictions and would they be able to accommodate that. Most restaurants I went to were very helpful in catering for my strange diet.

Hi again Belfie

When I eat out I usually have a jacket potato, a simple undressed salad and plain chicken. Or meat potatoes and vegetables. I stick to a simple menu avoiding all sauces and extras. Boring but safe! I’ve got to know which places I can eat at now, so it’s not a problem.

And yes, I do think that following the diet in general helped more than being “picky” over specific foods. At least at first til I’d learnt the ropes so to speak. Once I felt more confident about what I was doing, and what to look out for etc, I began to consider individual food reactions and also gave more consideration to other triggers that were outside my control (weather, environment etc) and were going on consistently alongside my dietary habits, so that I wasn’t attributing stuff to food when in fact it was to do with other things.

That said, whenever I get into difficulties and am in a bad patch, I always revert to what I now call my basic diet, maybe for a few days or a week or longer if necessary til I feel well enough to include other foods. By basic I mean what I know works for me without any triggering effects. That “basic” will be different for everyone. Again it’s boring but it works for me, so I stick with it.

Best wishes

Brenda

Hi

I find the diet does help me feel better (not 100% but maybe 80-90% mostly)
I found it VERY hard to stick to properly to begin with and ate things that i shouldnt have without knowing so i wasnt really seeing results.
Once i got very strict i found i felt significantly better by about a month and a few months in i really noticed.
I still get affected by things like the weather and hormones each month (only for women i guess) and stress etc so thats why i am not 100% i guess.

Watch out for hidden MSG in foods, it goes by many many names including ‘natural flavouring’, ‘yeast extract’ & ‘modified anything’.
I have found 95% of all packet foods are a no no and its really better to eat fresh as much as possible.
Fresh breads and yeast risen products are the exception to the fresh rule though and they should be 24 hours old.
I am always discovering new foods i can eat safely and i like to see the diet as a challenge rather than a negative.
Pinenuts are ok if you crave nuts (they are actually a seed family) and Appletise is ok if you crave fizzy pop (carbonated apple juice) and loads of others for example.
Instead of sliced bread which seems to always contain soya and preservatives, i eat pitta breads, crackers or wraps.
For a sweet tooth you can eat some fudge (check the ingredients or make your own) fruit crumbles, rice puddings, shortbreads, homemade biscuits, sweet popcorn and that sort of thing.

Anyway i am rambling but stick to it and really look at what you are eating including even your butters/spreads (most contain bad ingredients) and also whats in your vitamins (some contain gelatine etc) i take a multivit and omega oil daily in case i lack anything in my diet though to be honest think its healthier than its ever been! & after a few months the diet really does become a way of life and i cant believe i dont even miss chocolate!

Good luck
Dee :slight_smile:

I tried the diet, and I saw improvemnt but I think it was associated more with VRT and medication. I started adding just about everything back into my diet ad haven’t found anything that sets me off. I think my triggers are barometric pressure, hormones, and stress. There may be some food out there that triggers it, but I haven’t found it. I do stay away from aspartame and caffeine. Even if I “sneak” a sugarless piece if gum, I feel the same, so I’m not sure if its even a trigger, but I choose to stay away from it anyways. I avoided all food with MSG (even those with the hidden MSG names). I try not to eat too many foods with natural flavors or MSG, but it is nearly impossible. My doctor suggested avoiding major daily changes in you diet, especially sodium. Actually encouraged me to limit my sodium intake. I seem to be doing okay. Give the diet a try and see if it works for you…the advantage…you definitely lose weight!

I am afraid I fit into the 24/7 category which makes it almost impossible to find food triggers, I am trying the overall migraine diet for 3 months now…it has been good to lose some weight because you can’t eat anything!
Hope it works for some of you, I am about to break and get a big pizza this weekend!

I just joined this website and see that there are various reactions to the Heal your Headache the 123 cure which I have been following since November 2011 when I was diagnosed with MAV after extensive tests at my Ear nose and throat doc. I was told to be on this restrictive elimination diet for four months and then gradually add in foods after the 4 months. It took about a month for the diet to work for me and it has been 100% successful if I don’t cheat. After 3 months I tried decaf coffee a NO NO for me and sent me into a dizzy spell. I think there is residual caffeine in decaf enough to trigger me. Then my four months was over and I decided to try chick peas. I ate two bowls full,a a bit over zealous on my part, but I was craving legumes, a retricted food item. I am mostly a vegetarian but eat fish occasionally. I had a reaction 48 hours later! a full blown dizzy spell with nausea and vomitting for two hours. I’m on my fifth day of disequilibrium and feeling as though the ground is moving under me. The diet probably does not work for everyone but it does for me. I have been able to reintroduce yogurt and tofu with no triggers. Now I will be cautious about adding in anything on the list for awhile. Legumes seem to be a big NO NO!
Ruby

Wanted to add that i dont get affected by eating the wrong foods right away either, more like 24-48 hours later and then takes a day or two to go back to the better point again. It does take a long long time to pinpoint all your triggers but as you start to feel better and better all your hard work pays off, nothing worth having is ever gonna be easy as they say!
The book is essential in my opinion if you want to do this diet correctly, you can get it on Amazon quick and cheap enough, it really chnaged my life, it is like my bible :slight_smile:

thanks for all the info about the diet, I really appreciate it. And you’ve reminded me to get the book (which we STILL don’t have - cos we started the diet without ordering it!). He’s been on it 2 weeks so far and might be feeling a bit better… but he’s also been on effexor 3 weeks (as well as flunarizine). Yeah cos it’s alwauys worth trying everything at once :wink:.

Ruby - wow, I didn’t realise legumes could have such an effect!

We’re probably rushing it, but he tried bringing back in nuts yesterday, so we’re tracking any changes very closely while we see how we go. We’ve set up a “dizzy” rating sheet where he rates his dizziness on a 0-10 scale, 3 times a day (morning, noon, dinner time - which is his worst time of day). In the past I’ve found that gradual and subtle improvement was hard to be confident about… you know that “am I better? Oh I am a bit bettter. No i’m a bit worse, no i’m better”… that kinda thing. Very confusing & frustrating. So I’m hoping the ratings will help quantify it. And also quantify any food reactions.

Thanks again :slight_smile:

Sounds as if you’re doing a stirling job Belfie. It IS very difficult both to quantify dizziness and work out triggers, especially with taking the meds as well, but in time hopefully you will see patterns appear and they will provide you with clues as to exactly what is affecting what - or if indeed any food is a trigger at all. You’ll need a lot of patience though but if you and your husband can stay the course I think it will be worth it. Good luck!

Brenda

Get the book, get the book!!! Try the diet for 1-2 mths very very strictly BEFORE you reintroduce things or you wont have anything to compare the good and bad to. Just my advise. Its hard to stick to i know but if it improves how you feel with no meds its worth its weight in gold. :smiley:

Caffeine and cheese do it for me - they make me more mental than I am already but they were all I could truly suss out.

Has anyone experienced soy or vinegar as a trigger? Some food trigger lists include them and some don’t, so I’m wondering how many people have actually found that eliminating them (or not) has an affect.