Is eating (in general) a trigger for you?

Hi everyone,

I’ve been reading your forum for quite a while, but this is my first time posting. So before I ask my question I’ll introduce myself real quick: I’ve had MAV (actually labeled vestibular migraine by my doctor) for 4+ years, and it’s been quite disabling. I had to quit my job about 6 months into it and have not been able to work since. I mostly just stay home alone where it’s quiet and calm – I can usually handle being out and about in the world for 2 or 3 hours a week total. During really good phases I can probably handle 6-8 hours out a week. I’ve tried many of the usual preventives and supplements but haven’t yet found one that helps.

**Here’s my question: I have many of the typical triggers (noise, certain smells, motion of course) & many of the constant symptoms you all describe, but the one thing that brings about the most instantaneous, severe symptoms is when I eat more than a small amount of food (and ocassionally even small amounts of food will do it). And it’s not any particular food (I’ve had it happen with carbs, proteins, dairy, plain fruit, plain hard boiled egg, etc.).

Usually if I eat only small amounts I can avoid the severe symptoms, but if I overeat at all (even an amount that would probably be normal for most people), I very quickly get numbness and tingling in my lips and around my mouth. I sometimes get the tingling in my fingers as well. Sometimes I can stop the symptoms there if I stop eating and get somewhere quiet, but other time it progresses to the horrible queasy, motion sick feeling and I even lose some cognitive function (it’s hard to focus on what people are saying, and when I speak some words come out in the wrong order).**

Does anyone have anything at all like this? Even if it doesn’t bring on the exact symptoms I described, do any of you get worse from eating, regardless of the type of food?

If you’re reading this and have a moment to reply – whether your answer is yes or no – I’d really, really appreciate it. I’ve never been able to get a doctor to respond when I mention this trigger, and I’d love to be able to go back to my doctors with some information, either that yes, this is common, or nope, no one else seems to get this.

Thanks for your help, and thanks so much for contributing to this forum. It’s been a real sanity saver for me and I’m sure for tons of others!

— Begin quote from “alwaysmoving”

Hi everyone,

I’ve been reading your forum for quite a while, but this is my first time posting. So before I ask my question I’ll introduce myself real quick: I’ve had MAV (actually labeled vestibular migraine by my doctor) for 4+ years, and it’s been quite disabling. I had to quit my job about 6 months into it and have not been able to work since. I mostly just stay home alone where it’s quiet and calm – I can usually handle being out and about in the world for 2 or 3 hours a week total. During really good phases I can probably handle 6-8 hours out a week. I’ve tried many of the usual preventives and supplements but haven’t yet found one that helps.

**Here’s my question: I have many of the typical triggers (noise, certain smells, motion of course) & many of the constant symptoms you all describe, but the one thing that brings about the most instantaneous, severe symptoms is when I eat more than a small amount of food (and ocassionally even small amounts of food will do it). And it’s not any particular food (I’ve had it happen with carbs, proteins, dairy, plain fruit, plain hard boiled egg, etc.).

Usually if I eat only small amounts I can avoid the severe symptoms, but if I overeat at all (even an amount that would probably be normal for most people), I very quickly get numbness and tingling in my lips and around my mouth. I sometimes get the tingling in my fingers as well. Sometimes I can stop the symptoms there if I stop eating and get somewhere quiet, but other time it progresses to the horrible queasy, motion sick feeling and I even lose some cognitive function (it’s hard to focus on what people are saying, and when I speak some words come out in the wrong order).**

Does anyone have anything at all like this? Even if it doesn’t bring on the exact symptoms I described, do any of you get worse from eating, regardless of the type of food?

If you’re reading this and have a moment to reply – whether your answer is yes or no – I’d really, really appreciate it. I’ve never been able to get a doctor to respond when I mention this trigger, and I’d love to be able to go back to my doctors with some information, either that yes, this is common, or nope, no one else seems to get this.

Thanks for your help, and thanks so much for contributing to this forum. It’s been a real sanity saver for me and I’m sure for tons of others!

— End quote

You are the first person I have heard mention this and this is the one thing I have been trying to explain to people for months about my symptoms. YES, when I eat period the symptoms seem to get worse if I eat anything more than a small amount and even when I eat small amounts there are times when I get the increased symptoms, it seems to come later in the day with me when I am eating small meals so my question is does it have something to do with the overall amount of food.

I cannot under any circumstances eat a regular meal like most people do or I will get the wavs in my head and this overall sick feeling all over. The motion intolerance is ramped up immediately if I do this . I like you manage most days as long as I am home in a quite environment and can mange going out on a limited bases. I lost my job in January due to this condition and see no way I could work a regular 8 hour day at this point and time.

I have seen the doctors and when ask about this they all just seem to shrug and do not really seem to think much about it which is very frustrating. I was beginning to think I was the only one who had this symptom so I almost just thought maybe it is just me. This is one of the reasons I have lost so much weight and that is not healthy for me at this point so I have to force myself to eat throughout the day…

I would be very interested to see if your doctor or any doctors have any idea what this may be…please keep us updated.

I understand how you feel and some days are just better than others! At least they are for me.

Hi Timeless,

Thanks so much for your reply. It’s very interesting to hear from you, because like you, I had never heard of anyone else with this odd trigger. It sounds like your experience with eating is very similar to mine, though I don’t notice this trigger getting worse for me later in the day. (Unfortunately I haven’t had the weight loss either, thanks to all these crazy drugs which tend to cause the exact opposite effect regardless of how much or how little you eat! Though I do understand what you’re saying, significant weight loss can also be a negative, unwelcome effect for people.)

I will be curious to see if there are more people like us out there, because my doctors seem to be stumped by it (I assume they’re stumped, since they don’t really respond when I mention it) and the other patients I’ve met haven’t experienced it. And I’ve even heard people with regular migraines say that eating a big meal actually makes them feel better!

I’m not seeing my headache doctor again for another month, but I may try to call him in the meantime if I gather enough information here. I’ll be sure to report back if I find out anything at all useful or interesting.

I might, and I mean might, have something related, but I doubt it. My nose often gets runny when/after eating. What I eat doesn’t matter - cold milk, room-temperature bread, steaming potatoes. Can’t be allergies since it happens with ALL kinds of foods, at least I haven’t found exceptions.
Now, they say that migraine can cause sinus/nose symptoms including runny nose… it’s a long shot, but since you did ask for all and any replies, here’s mine. :slight_smile:

Thanks, Tranquility. Like you said, I’m not sure if it’s the same thing as happens to me, but as I was reading your post I did have the same thought you did, about how a stuffy nose/sinuses can be part of a migraine. Either way, it’s quite interesting!

Do you remember if this phenomenom started happening around the same time your other MAV symptoms started? Or was this always something that happened to you, even before the MAV?

alwaysmoving,

How long have you been dealing with all of this ( the four years you spoke of) and do you find that the eating small meals helps as opposed to larger meals.

I am curious what medications have you tried and what supplements? Do you have any sensitivity to smells , perfumes , scents, etc.

What percentage would you say that you are at most of the time, do you have anxiety associated with the condition? Did the symptoms seem worse when you tried to work or are they about the same now?

I am just curious as you are the first person who has the correlation of eating that I have …that is what I first noticed continuous with all this was when OR right after I ate I got the “weird” feeling.

Timeless,

the MAV symptoms started for me in August of 2004. I didn’t really notice the issue with eating making it worse until maybe a year or two into it. But it may have been happening the whole time I had the MAV symptoms and I just didn’t really put it together at first because I was so overwhelmed and consfused by the ups and downs and unpredictability of it all, it was hard for me to tell what was triggering anything.

My symptoms have gotten progressively worse over the 4 years, in the sense that I can handle much less stimulus (noise, crowds, activity) before I need a break, and I need much longer breaks to recover before I’m ready to go out into the world again. So it’s hard to answer your question about work, because the last time I worked (other than in my home) was 4 years ago. At that point I was in general doing better than I am now, but since ANY activity makes me feel worse, than yes, if I tried to work now I would feel worse. Just the traveling to work, the noise, the being around people, having to be out and about every day without a break for my head – all that would make it much worse for me.

Let’s see what else did you ask? yes, eating small meals does help me avoid the major spike in symptoms, but it doesn’t get rid of my constant, daily symptoms that are always with me. I’m very careful to eat small meals every few hours, and I try to keep it on a very regular schedule (since I am also triggered if I go too long without eating). So that helps me keep steady, but it hasn’t improved my “baseline” symptom level.

No, I don’t have any anxiety associated with this. The only time I’ve ever had any anxiety related is a couple times when the symptoms were very extreme (with cognitive problems) and I was out alone and had a long way to get home. So then it was just kind of scary to try to get myself home. But generally, no anxiety.

As for meds, I’ll probably forget a few, but I’ve tried zoloft, cardizem, atenolol, verapamil, 5 different types of tricyclics, wellbutrin and topamax. I’ve also taken magnesium & B2, Omega 3, done physical therapy, acupuncture. I’m sure there are others, but that’s what I can think of off the top of my head.

Oh as for sensitivities to smells, yes I’m VERY sensitive to smells. The worst are perfumey smells, but I’m also bothered by fake sweet smells, like flavored lip gloss or scented candles. I have to smell everything before I buy it, if possible, and otherwise, I end up throwing away or giving away lots and lots of stuff because I can’t take the smell.

You mentioned that meds are helping you and so the food issue isn’t bothering you as much anymore – what meds helped you? And did you have to try a bunch of others before finding something that worked?

— Begin quote from ____

Oh as for sensitivities to smells, yes I’m VERY sensitive to smells. The worst are perfumey smells, but I’m also bothered by fake sweet smells, like flavored lip gloss or scented candles. I have to smell everything before I buy it, if possible, and otherwise, I end up throwing away or giving away lots and lots of stuff because I can’t take the smell.

You mentioned that meds are helping you and so the food issue isn’t bothering you as much anymore – what meds helped you? And did you have to try a bunch of others before finding something that worked?

— End quote

I was wondering about the smells because that has to be my biggest trigger of everything, I have changed all my detergents, cleaners, everything , shampoo, hair products, makeup to scent free, no dyes, no scents , nothing…that is one of the main reasons I can not go out much because I can not be around them at all or it sends my symptoms into warp drive.

No I am not taking any medication at this time because I am very med sensitive, I have tried a few but could not tolerate any of them and frankly I am scared to try any more. I do take a very small dose of Valium if my symptoms get really bad but I do have anxiety with mine so that is what I take it for more than the the MAv itself. .25mg as needed.

I live on a very strict diet , low carbs, lots of chicken , fish and some beef for fat intake. Not as many vegetables as I should but very low sugar intake because I am convinced some of this is because I believe I have RHG in addition to the MAv.
I follow the migraine diet to a tee and do not stray away from it period. It has helped me a lot.

But I must say the last few days have not been very good for me and I am not sure why I guess I am just going through a bad period. Of course we are having some weather changes which may be contributing to the increased symptoms. Who really every knows. I had the first real headache I have had in a long time yesterday…and it was like the headaches I used to get every day …so I do not know why? I took half of one of my abortive medications last night to sleep and it is better today but the lingering blah feeling has been there all day and I have been very tired today which is not usually the case.

I feel for you as I know what you are going through and I wish I had all the answers I suppose it is trial and error with this disease.

I wonder if we will ever all be “normal” again…we can hope and pray one day there will be a cure for this.

.

Wow, Timeless, I’m really sorry to hear you’re going through this in such a severe way too. You sound a lot like me, and I really do sympathize. I hate for anyone else to have to live with this!

It sounds like you’re even more sensitive to scent than I am. I am definitely very bothered by most scented products, but it’s usually only a moderate problem for me out and about in the world. Of course if I have to be near someone wearing perfume or scented lotion, like in an elevator or on a bus or something, then it’s bad and I have to cover my nose with my sleeve or try to hold my breath until I can move away. Or if there’s a strong food smell somewhere that can be a problem. But for the most part, I can aovid the problem scents, unless I’m out with a friend who insists on wearing perfume, and then I’m kind of stuck with them!!

Like you, I’m also very sensitive to medicine. I always start out on very tiny doses and build my way up very slowly. But I have had bad side effects on some of the meds, and sometimes the side effects don’t go away just by going of the medicine. So I completely understand when you say you’re afraid to try anything new. I’m on topamax now for the second time, but it only seems to help a tiny, tiny bit and the side effects aren’t really worth it, so I’m thinking of going off it. And yes, after that, I’m really afraid to try anything new, especially since anything else I would try would just be a variation on something I’ve already tried (a different anti-seizure, or a different calcium channel blocker when I’ve already tried several, etc. – I’ve tried at least one in every category). So until some of the new meds they’re working on specifically for migraine come out, I don’t think I’ll be trying anything new either.

It sounds like you’re very diligent about your diet though – that’s impressive! So that’s really helped you? Do you remember how long it took after you made the diet changes to start seeing a difference in your symptoms? I’ve cut out a lot of the foods that they say are the really big triggers (like alcohol – I actually can’t drink at all, MSG, aspartame), and tried doing no sugar for a couple months, but I haven’t done a real strict diet.

Anyway, I’m sorry to hear you’ve been feeling worse lately. It is strange how sometimes things get worse for no apparent reason. Usually I know when I feel worse that it’s because I was out a lot recently, exposed to a lot of noise, etc., but sometimes out of the blue my symptoms will suddenly be bad for a few days or a few weeks, and that’s always harder to take, I think, when you don’t know why it’s happening. Hopefully you’ll feel better soon. I actually have chronic headaches as part of my symptoms (have a headache all the time), but usually if I’ve just been resting my head at home, then the headache is fairly mild, and it’s been a lot worse the past couple weeks, so maybe there’s something in the air right now! Who knows??

BTW, if you already mentioned this somewhere I apologize, but how long have you had MAV?

— Begin quote from ____

It sounds like you’re very diligent about your diet though – that’s impressive! So that’s really helped you? Do you remember how long it took after you made the diet changes to start seeing a difference in your symptoms? I’ve cut out a lot of the foods that they say are the really big triggers (like alcohol – I actually can’t drink at all, MSG, aspartame), and tried doing no sugar for a couple months, but I haven’t done a real strict diet.

— End quote

It took about two months to see a real big difference, but it was marked improvement from where I was before I started it. I had a headache every day and they were awful.

— Begin quote from ____

BTW, if you already mentioned this somewhere I apologize, but how long have you had MAV?

— End quote

Mine started in the fall of 2007 but I did not know that was what it was at that time. I did not get a diagnosis until this past year.

I often get this, but I suffer with reactive hypoglycemia, this may be a problem for you.

BTW, I get the runny nose thing too.

Best Wishes
Christine

Thanks for your response, Christine.

Do you mind if I ask how you discovered you have reactive hypoglycemia? I mean, was it diagnosed with a test, or you just figured it out based on what was happening to you?

I’m curious because I thought this might possibly be the explanation for me, but I had a glucose tolerance test years ago, when the dizziness started and I had no clue what was wrong with me. So they did a bunch of tests, including the glucose tolerance (I hadn’t yet noticed the clear connection with eating yet though, so it was just sort of chance that I had the test). Anyway, the doctor who ordered the test thought I had an abnormal result, but then I discovered that he was sort of a quack who told everyone they had problems with sugar. And the doctors I’ve been to since looked at the test results and thought they were fine (several different doctors). I’ve also read that a lot of doctors don’t believe in the glucose tolerance test.

So is there a different test I should be getting? Or a certain type of doctor I should go to, separate from my headache doctor or GP? Thanks!

I noticed I was getting weird symptoms, especially mornings, soon after eating, dizzier, sweating, sinking feeling. I bought a glucometer from the chemist and started taking my blood sugar, it took a while to spot as I was actually dropping only three quarter an hour after eating anything in the mornings, no matter what I ate. I took my fasting on waking, it was 4.7, I was dropping to 2.9 or 3.3 or 3.6, this went on all morning soon after I ate. I took these reading to the first GP who poo pooed it. The second GP (speciality diabetis) saw a problem and sent me to the endriconologist who did a glucose tolerance test (4 hrs long). Just as well, as the lucozade drink kept it up for ages! I didnt think anything was going to happen when it suddenly dropped to 2.9. Great, diagnosis! Three dieticians later and being told to eat brown rice, nothing helped. I worked out my own eating regimne to keep myself stable.

Once you know what to look out for it gets easier. For instance, if you are hungry in the day and havent eaten anything for a couple of hours and you reach for a doughnut (no protein), you may feel like you have narcolepsy 2 hrs later, that is the blood sugar. Sweating, shaking, sinking, dizzy, cant bend head over, usually it has dropped too far. Pouring with sweat as you eat a big meal, blood sugar, it had been too low before you ate.
Hope this helps. My advice would be to get a glucometer and do tests on yourself.
Christine

Thanks, Christine. I’m going to look into that.

Your symptoms sound a little different from mine, though still similar enough that it’s worth me checking out. I did have the glucose tolerance test a few years ago, but aside from the first doctor who ordered the test, all my other doctors seemed to think the results were fine (or they just didn’t believe the test was worthwhile, not sure which!)

Thanks for the tips!