Tears of Vindication (And Important Information for Migraine Sufferers)

Last night while on MSN, I saw a headline: First genetic link to migraine found.  Of course I immediately clicked on over.

Fascinating stuff.  You can read the article here if you want, but I’m going to nutshell it for you:  researchers examined genetic data for 50,000 people (hello?  thank you for the big sampling! I’m really tired of reading about studies done with 25  or 100 people) and found that those with a specific DNA variant that affects their body’s ability to regulate glutamate are more likely to develop migraines.

Specifically, the article said:

In a study published in the journal Nature on Sunday, Palotie’s team said the particular migraine risk DNA variant they had identified was on chromosome 8 between two genes known as PGCP and MTDH/AEG-1.

Their research showed that it appears to regulate levels of glutamate, a chemical known as a neurotransmitter which transports messages between nerve cells in the brain.

It does this by altering the activity of MTDH/AEG-1 in cells, which regulates the activity of the EAAT2 gene — a protein responsible for clearing glutamate from brain synapses.

But it gets more interesting (to me), because then it said:

Previous research has found links between EAAT2 and other neurological diseases, including epilepsy, schizophrenia and various mood and anxiety disorders.

“Why,” you ask, “does that make it more interesting to you?”

Because I sometimes have seizures.  There.  I said it.  I’ve never blogged about it before because, well, because A. it’s not that big a deal, and B. I’ve never been officially diagnosed, so C. I never put it down on any medical paperwork.  But I do have mild seizures every now and then, and I have had them since as far back as I can remember (ask my parents, I remember farther back than most people).

When I was little my mother called my seizures “the giggles” because, as far as she knew, that’s all it was.  I would, for no apparent reason, break out into a little giggling fit.  It didn’t happen often, and nothing else happened (that anyone could see) to accompany it, so nobody thought anything about it.  I especially didn’t think anything about it because when you’re four years old and you giggle uncontrollably for a few seconds and your mother laughs and offers to make you Giggle Noodle Soup for lunch (and I believe there was such a thing on the market back then), you just laugh it off with her.

As I got older, however, I realized it was more than just giggles.  I’ve been slap happy enough late nights in my life to recognize the difference.  I began to be more cognizant of a pattern.  I could feel “the giggles” coming before they hit.  It’s hard to describe the feeling – a little a dizzy, a little fuzzy, a little out-of-body-I-don’t-know-what.  Then the actual laughter would come, last a few seconds, and as it ebbed I would feel less fuzzy, more dizzy and, as I’ve gotten older, nauseous.  And that’s it.  That is how my seizures go.  From start to finish it maybe lasts 20 seconds and I never lose consciousness or awareness at all.

In college it happened almost daily for a while, but in the fourteen years we’ve been married, I think my husband has witnessed it only a smattering of times.

I did go see a Dr. in my very early 20s and try to talk to him about it, but when I explained that I sometimes have odd fits of uncontrollable laughter (it didn’t occur to me at the time to use the word “seizure” because, in my mind, a seizure was more or less something that left one convulsing on the floor) he just looked at me like I was a complete idiot who was wasting his time and said (in that condescending tone that they must teach in medical school), “Well, I suppose you could suffer from worse problems, couldn’t you?”

I felt completely humiliated, demeaned, belittled.  And so I haven’t mentioned it to a Dr. since.  I have, however, talked to friends who have (officially diagnosed) epilepsy, and I have done a small bit of reading up on seizures, so I feel comfortable saying that my “giggles” are a mild seizure disorder.  I shall be discussing this with my new Dr. at my next appointment.

Moving along . . . because it gets EVEN BETTER . . . after reading this article I took the next logical step and googled “food sources of glutamate.”

And here is where the tears of vindication came.  I found a website done by a veterinarian (yes, a veterinarian) who successfully treats dogs with seizure disorders by putting them on a glutamate/aspartate restricted diet.  He also has seen such a diet work well in humans with a variety of chronic pain conditions.  And?  He lists foods high in glutamate/aspartate (and, yes, that is related to aspartame, and I shall never touch diet pop again).

Vet’s List of High Glutamate Foods            E.’s List of Foods That Trigger Her Migraines
Peanuts (very high)                                         Peanuts (first trigger food)
Grains (esp. wheat, barely & oats)             Wheat
Dairy products                                                   Dairy products
Beans like soy, lentils, etc.                            Soy (I don’t often eat other beans anyway)
Meats & Eggs (though eggs are lower)      Eggs
Seeds like sunflower and pumpkin             *My sunbutter days may be numbered*

I’m not stupid. I know people must think I’m a huge hypochondriac when I say I can’t eat all these foods without getting bone-crunching headaches.  For years now social situations have been embarrassing and awkward because there is usually so little I can eat at such things, which I don’t mind, really!  Because I do not expect the world at large to cater to my problems.  But somehow somebody always seems to notice me not eating, and then whoever the hostess is winds up apologizing, and I feel bad that she feels bad, and there are mutterings of, “Oh, if I’d known ahead of time . . .” but what am I supposed to do?  Call ahead of time to RSVP that I will be attending and ask for special food?  I don’t think so.  Then I wind up explaining that there are so many things I can’t eat that I couldn’t possibly expect anyone to go out of their way to make refreshments for me, and then someone asks what foods I can’t eat, and I run down the list with a laugh, and then I just know that somebody is probably thinking I’m a HUGE nut job.

So reading that article about a gene variant that affects the body’s ability to clean up excess glutamate being connected to migraines, and then reading that list of glutamate-rich foods and comparing it to my own list? Made me cry.  It’s making me cry again.

I’m. not. crazy.  My headaches are horrible, and my food triggers are real.  Just because I’ve figured them out on my own (except for the ones I haven’t figure out), the hard, painful way, without any help from Dr.s who couldn’t or wouldn’t help me, does not mean they aren’t legitimate.  I’m. not. crazy.  I may be a walking freak show as far as my eating goes, but I’m not a nut job.

*still crying*

My next step, of course, was to see if I could find any connection between hormones and the body’s ability to regulate glutamate, because I know there is a hormonal connection, so I googled “hormones and glutamate” and found Very Scholarly Articles.  Things with titles like Hormonal Regulation of Glutamate Receptor Gene Expression in
the Anteroventral Periventricular Nucleus of the Hypothalamus.

I think that article was about a study using rodents of some kind.

I’m not stupid, people — academic scholarships, gifted programs and all that (though I freely admit I believe the years of migraines have killed off brain cells and brought me a tad bit closer to stupid) – but this was more than I could digest without a dictionary and a scientist at my side.  So I will keep researching the connection between hormones and the regulation of glutamate, and if I find anything that I can’t really understand but think might be helpful I will take it with me to my next Dr. appointment.

I don’t know if I will ever be able to eat like a normal person again (well, in a healthy sense – I don’t actually want to eat like the typical normal person) but it is somehow freeing to see what appear to be pieces of my puzzle falling into place.

And George . . .

11 thoughts on “Tears of Vindication (And Important Information for Migraine Sufferers)

  1. I’m so glad you feel validated. I think people who are in tune with their bodies can often put two and two together on their own.
    Not to harp on the subject of your food exclusions, but I am curious as to what you DO eat on a daily basis, and when you go out to special gatherings.

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  2. Deanne

    Validation is huge and I am glad you have rightfully found it. I have an aunt who has had unexplained pain for most of her life. It wasn’t until she was in her 50’s that she finally opened up to a Dr and told every little nit-picky thing she could think of (from time of memory to present) that she finally was diagnosed properly and finally living pain free. Up until that point, she pretty much listened to her parents (yes, my grandparents) that she was nuts. Now she is slowly going through counselling to get rid of her “I am nuts” and “my parents don’t love me” mentality. Feeling or hearing that you are nuts can kind of make you nuts…you know? All that rambling to say, I am sure at times you felt like there was something wrong with your head.

    BTW, I would also love to know what you eat. My oldest has to avoid soy, wheat (unless it is whole grain and soaked for hours before using), processed sugars, pasteurized dairy products, and the new one we are finding is peanuts. One little bit in a day isn’t so bad, but two or three and we have issues. Three meals and a snack all containing them and it’s really bad for her and those that have to be around her. Thankfully everyone loves almond butter on sourdough wheat bread, brown rice pasta is getting easy to find, we have friends that we can get raw honey from, and there is a farm just down the road a bit where we can get high quality raw milk and pastuered eggs. There is also an Amish store down another road a ways that has all kinds of odd grains that don’t seem to bother her as bad but aren’t as heavy as whole wheat as well as other odds and ends that we use. We are always looking for food inspiration as much of what is out there inspiration-wise just doesn’t work for us. I used to really enjoy browsing through cookbooks, but not so much anymore.

    I truly am glad that you are finding what is wrong and I wish you a speedy path to solutions and full explanations!

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  3. I so understand. On so many levels. I have food allergies. So does A.J. He also has fainting spells (that look like seizures!) and it took us a while to find a dr that wasn’t completely dismissive. I have weird heart things (palpitations? arrhythmias? something, anyway) that has been swept under the rug as “nothing.” And, the worst? I am very sensitive to touch. Can I just tell you how great that’s been? *major sarcasm* I have found some scientific literature about a few of these things, but I’m still crazy, at least to all the people that matter. SO HAPPY FOR YOU!! One day, I’ll get where you are. I hope.

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  4. Hmm. I’ll be sending my sister over to read this. She’s had migraines for a long time & with each kid, they get worse. And while her kids can talk a.lot. I don’t really think that’s the issue 😉

    Vindication is a great thing & having useful info is even better!

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  5. m

    Do you drive? You should check with a Dr and make sure driving a car is OK. I know it is a big drag, but if you suspect you have some sort of a seizure disorder you would not want to be out in the car driving the kids around. Also it may be easily controled with meds.

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  6. M., while I appreciate your concern, perhaps I didn’t make myself clear enough. From start to finish, meaning from the time I feel an episode coming on until the time it is done, lasts maybe 20 seconds. I don’t lose consciousness, nor do I lose awareness at all during that time. In fact, I can pretty much do whatever I want except talk when I am experiencing one. It’s difficult to laugh and talk at the same time. This has been happening to me since I was very, very young and I know better than any Dr. who spends five minutes talking to me that I can drive. As I said, in 14 years my husband has only seen it happen a few times. It has happened a few times when he’s been at work, as well, but overall? It doesn’t occur often enough for me to line the pockets of some pharmaceutical company and risk side effects that could very well be worse, and undoubtedly more frequent, that what I am experiencing. And I can’t help but wonder if the frequency of these episodes has decreased so much over the years because the migraines have caused to me cut foods high in glutamate out of my diet. What a happy coincidence, no?

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  7. So glad you are finding so much useful information! Though I haven’t experienced what you are going through, I have experienced how powerful it is to be struggling with not feeling well and finding information that totally fits and pieces everything together. I hope you are on the track to finding ways to make things a bit easier for you!

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  8. I kind of hate doctors. And have very little respect for their diagnoses or non-diagnoses. For this very reason – you knew something was wrong, but no one listens, or asks the right questions. I think it’s awesome you’ve found this connection and have concrete things you can do.

    It sort of freaks me out though, how totally common foods (like peanuts and wheat) can have such wacko effects on us. I mean, I get asparateme or HFCS, because those are like “artificial”… I totally believe you (and the vet) are right, but it just bums me out. Because if any of my kids have those issues, well, good luck to them because I am just not that good at creative meal planning, y’know?

    But still, YAY YOU! 🙂

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  9. terri

    I have a friend who has migraines because of food. She is allergic to eggs, iceberg lettuce, potatoes, rice, iodine, citrus fruits and a few other things. She had a doctor do allergy scratch tests on her. When she stopped eating the different foods her migraines went away. She brings her own food to things or will pick and choose a few things to eat at parties. Once in a while she will take a benadryl and eat a piece of cheese cake.

    Hope you have found something that works!

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  10. I am so glad you typed up the list of foods to avoid. I have two daughters who get migraines. I am going to show them the list and see if they want to try cutting out any of those foods to see if it cuts down on their migraines.

    Keep educating us!

    Like

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