Sunday, October 7, 2012

It All Began With the Migraines...

To anyone who suffers from migraines, this will, sadly, be a familiar story. I have been plagued by migraines since I was a child-- migraines of the worst kind-- the aura-dizzy, vomit your guts out, many times end up in the ER, and surrender half your life to a dark room isolated from your loved ones kind. For over twenty years I thought I had no choice but to be resigned to this rotten-luck "disease". Oh, I tried a lot of things. I tried tons of medication. Tons. I tried going of all medications and looking for natural alternative cures, downing cups of weird recommended concoctions, combinations of feverfew, honey, apple cider vinegar, parsley--you name it, I tried to ingest it, in a desperate attempt to make my head pain-free. I stopped drinking all caffeine, despite how I cherish coffee. I went to teeccino as a replacement, tasted great, but migraine city.  I read "The Migraine Diet" and compiled a list of possible triggers that ruled out so many foods that I was finding it hard to find something I actually COULD eat.

My family always considered me "sickly". I remember my dad telling an ex of mine that he had to take good care of me because I was "sickly". And it was true, EVERYTHING gave me a migraine. Waiting too long to eat, eating the "wrong" foods, not eating enough food, the weather, hormonal changes, stress, exercise or exertion, not enough water, too much water, and then the good ole no detectable reason just for fun kind. My poor friends and family endured not only my "down" periods when actually in the thralls of one, but also my hypersensitivity about all the things that "could" give me one. They have learned more than any non-migraine sufferer ever wants to know.  Doctors didn't seem to have any answers either, I went to specialists, neurologists, special neurologists that specialized in migraines-- they had very few answers. One along the way, suggested 400 mg per day of Magnesium Glycinate, and 100 mg per day of CoQ10- and lo and behold, this DID actually cut my migraines by about 15%, no small miracle. I went from having a daily chronic headache--where even on a "good" day I felt it lingering back there ready to step into the limelight at any time-- to having a few ACTUAL good days a week. But mostly doctors prescribed medications, many times medications with a side effect of headaches. I was on topamax for a few years and sure, less migraines (not migraine free by any means) but an increased number of what I can only assume were dehydration headaches.

Along the way, I had other weird symptoms that I wasn't sure was related to the pain in my head, but definitely didn't seem "right" and were also baffling to doctors. I would get intensely itchy ankle hives. They would only come out in the evenings, and no anti-itch cream would get rid of them. I couldn't sleep, I would get up standing in the tub with freezing water cascading around my feet. The stress of it would give me a migraine, I'd be standing in the tub with ice water running around my feet and a hot water bottle on my head and crying, sometimes screaming SOMETHING HAS GOT TO GIVE! NO ONE SHOULD HAVE TO LIVE LIKE THIS!  Sometimes I would get weird itchy tiny hives that would randomly occur in various spots on my body too-- they would itch like mad and with no discernible cause and no real relief. Last but not least, I suddenly developed a weird tongue condition that doctors couldn't explain. I got second, third, fourteenth opinions-- again, bring on the specialist, ear nose throat guys, dermatologists, dentists, allergists. Most of them said "geographic tongue", and said it's just something people get sometimes, no one knows why, but it's harmless. It was NOT harmless for me. First of all, suddenly it eliminated a whole new category of foods: anything acidic, lemons, vinegar, oranges, orange juice. My already restricted diet (restricted from foods that supposedly triggered migraines) became even more restricted so as not to upset my apparently delicate tongue. If you don't get migraines, or hives, I probably sound a little over-dramatic-- and I may be-- granted it wasn't actual torture, no one was pulling out my fingernails, but it was the closest thing to torture I can imagine. Chronic daily pain in your head, fire burning my feet alive, and now painful ever-shifting spots on my tongue.  The tongue thing was also embarassing I might add, for a girl in her early thirties trying to have something resembling a dating life in between chronic migraines.

People started to think I was a hypochondriac, a boyfriend started joking that I "probably wasn't feeling well because earlier I had looked at something yellow". It was frustrating to those around me, and frustrating on several levels for me. I hated being "a picky eater", something I had NEVER been (I was the child that took a stool in front of the oven once just to watch lasagna bake, there are few things I love more in life than food.) I hated having to pick through what I could and couldn't eat, and STILL ENDING UP WITH A FREAKING HEADACHE, OR RASH, OR SPOTS ON MY TONGUE! It just didn't seem fair. I was diligently searching for answers, and every "cure" seemed to lead to a new problem. What the hell was wrong with me??

I did pick up some information along the way, bits and pieces that didn't quite make sense. For instance, my go to food when I felt a headache coming on was chicken and potatoes. As plain as possible, just a plain chicken breast, no seasoning, browned in a pan with a little olive oil, and a cut up potato cooked the same way. Eating this and retiring to my room for a four hour nap seemed to do the trick. Also, a long hot shower. Some people swear by ice on their head, but for me it was the heat that helped. I began to realize that foods that reduced inflammation (like parsley) seemed to help a lot. One doctor said it appeared to be dermatographic urticaria (hives brought on by pressure on the skin or an allergic reaction) and prescribed me a daily antihistamine (Xyzal) and that almost entirely eliminated the ankle hives and body rashes. That doctor said it could very well be hay fever causing the rashes. I seemed to have an answer to at least one of my problems, and the Xyzal really helped. When I ended up in the hospital they would give me the same combo every time, a painkiller, and a mega-dose of Benadryl.  I remember one ER doctor saying the combo seemed to work on most migraine sufferer's and they didn't really know why.  The wheels in my head were turning, how could this not be an allergy of some kind? Benadryl was for allergies, antihistamines like Xyzal were for allergies, hives was usually a reaction to having indulged in an allergenic food for other people, was it a food allergy? I went to the allergist and got the whole kit and caboodle back scratch fever. Negative. No allergies found. It even ruled out hay fever. I was back at square one.

I continued taking the daily antihistamine anyway, it was helping even if no one had any idea why. When a migraine started coming on, I learned to take my migraine meds along with benadryl capsules to head off that migraine-so-bad-I-ended-up-in-the ER, and that was working. I ate more anti-inflammatory foods, like tabbouleh (copious amounts of parsley), garlic, broccoli.  I started researching, to answer my primary question which was-- why did I have such overactive histamine? Is there anything I could do about it that didn't require taking loads of medication? Common sense told me that there had to be an underlying cause, one that made sense, one that would lead to a cure that was natural and organic and didn't involve being dependent on medications all my life. So I kept researching.

I have always been pretty slim (not being able to eat anything without fear of debilitating head pain will do that to you), but around the same time that my tongue broke out in spots, I also started putting on the pounds. I gained about twenty pounds, and all around my stomach. I felt bloated and just generally ill. I was having such trouble staying awake during the day that the doctors began to worry it was my thyroid. Which made sense because I was also losing a LOT of hair in the shower. Part of my job involves driving during the day, and sometimes in the afternoon, I was so tired I could fall asleep at red lights. I would often have to pull over to catch a quick fifteen minute nap because my eyes were rolling back in my head while driving.  Which hardly even helped. I came up, threw on sweat pants and melted into the couch after work every day. My ex thought I was depressed. I thought so too. I was also having pretty chronic digestive problems, I will try not to get too grossly descriptive, but food seemed to be running right through me. The doctors did all the blood tests, and once again, nothing was wrong with me. No thyroid problems. I have never felt SO frustrated to have positive test results. When you hear that nothing is wrong with you, it should be good news, but I knew something was wrong, this could NOT be normal.

Due to the increasing weight gain I started looking into diets. Which didn't make a whole lot of sense considering I wasn't really eating all that much to begin with, and usually healthy food. I would have a granola bar and some greek yogurt for breakfast, maybe a vegetable heavy whole-grain pasta for lunch, and usually a hearty dinner that consisted of a protein, a vegetable, and a starch. My biggest vice was popping chocolates during my tired phase in the afternoon. I swear to you, I tried to cut back on those, but it was an overwhelming craving--willpower didn't stand a chance next to that. It was also the only thing that kept me from passing out into my desk. Little cubes of chocolate from 3-5pm were keeping me alive. Admittedly, I was never one to say no to dessert at night either, cakes, cookies, ice cream. I had never really had a sweet tooth before, always craving salty things over sweet, but around this time, the time of the tongue spots and the weight gain, I began having uncontrollable sweets cravings. Just what you need when you already feel heavy and bloated, but, I reasoned, I was depressed, and my constant fatigue made my job really hard-- I deserved a treat.

I stumbled onto an answer by accident, and only thanks to my own vanity. The weight gain had me looking at food from a different perspective than I had before. No longer was I just concerned with what CAN I eat, but also what are the things I'm eating actually doing to my body? Somewhere in all my reading and researching I stumbled onto the idea of the glycemic index and the problem with insulin and weight gain.  I watched Food, Inc. one evening, and it spurred on a whole NEW round of research. How healthy was even my "healthy" food? I cut WAY back on meat, and started to look for protein alternatives like hemp protein.

A friend gave me the book "The Blood Type Diet". I am an O, so Dr. David recommended I stay away from grains and dairy. I didn't know how much I bought it, but tried it waveringly. I definitely didn't have 100% commitment, I still never said no to cake (which, in my office, was offered at least once a week) and I was still eating out pretty regularly, occasions to which I would just throw caution to the wind, I mean, no one wants to be that picky orderer hassling the waitstaff about what ingredients are in everything. I was shocked to find that cutting the wheat down in my diet changed my health dramatically. DRAMATICALLY. I cut the wheat out, and replaced it with rice and gluten-free rice products, and several miraculous things happened. First, IT CUT MY MIGRAINES DOWN BY ABOUT 60%, that was nothing short of a miracle. Also, my tongue cleared up! Sometimes I would catch myself staring at my healthy pink tongue in the mirror in some weird kind of wonder. It had been ages since I'd had a tongue like that. I was still getting the occasional bout of hives, and the occasional migraine, but suddenly my life was tolerable.  Also, much to my vain pleasure, my hair loss stopped, my hair started feeling moderate-to-thick again! Oh, AND I dropped a significant amount of weight (too much in fact.) I had energy for the first time in ages! I felt like a new person, one that could make plans socially without having to back out at the last minute due to headaches, or because I couldn't drag my bloated, fatigued butt off the couch. I still had the occasional migraine for unexplainable causes, at times I was convinced it was from eating eggs, or from eating bacon, or from eating nuts ( a previous no-no as they were on the aforementioned "migraine trigger" list, but from time to time I thought I'd give them another go)

I stumbled onto Dr. William Davis's "Wheat Belly" and tried to push it on anyone and everyone I knew. I decided to get more vigilant about my wheat-free lifestyle. My toddler niece was diagnosed with celiac disease, and it started the wheels in my brain turning. I asked my doctor about getting tested for celiac, he said there was no conclusive way to test for it. He could do an intestinal biopsy to see if I had damaged intestines from celiac, but many times people don't even have damage so it really wouldn't be a conclusive test. He said the best test was to stop eating gluten and see how I felt. He also said that I wasn't likely to have it if I was already in my thirties and had been eating gluten all my life. People with celiac disease have intestinal bloating issues that are unmistakable, he said. You couldn't get this far in life without knowing you have it, if you truly have it.

That made sense. My toddler niece couldn't have a smidge of gluten without suffering enormous amounts of pain. I didn't seem to have THAT kind of reaction. I called my neurologist to ask him if my migraines could be related to Celiac. Doubtful, he said. He had not seen any information that linked the two disorders.

I started researching gluten sensitivity and was astonished by what I found. People with Celiac and/or gluten sensitivity DO often have migraines, and hair loss, and digestive issues, and hives, and even sometimes hives on the tongue. I found an article specifically linking Celiac with geographic tongue. I was ready to consider myself gluten sensitive. But, I reasoned, it isn't like it's Celiac disease, and that, I decided, means I can still have a little gluten every once in a while, right? I can still eat out like a normal human being, and I can still enjoy the occasional piece of cake.

I tried a stricter wheat-free and gluten-free diet for a few weeks. Then I had a pizza with my carb-loving boyfriend, and had the WORST gas-type pain of my life in my gut. I had never experienced anything like it. That was enough to cure me of my desire to cheat with a little wheat!

I was still indulging in gluten free products though, the occasional gluten-free cupcake or pie, gluten-free hot dog buns, bread, breaded chicken nuggets. I went on a week long binge with a loaf of gluten-free bread, crusty french bread baked in the oven with fresh jam... I went a little nuts with it.  Then I had a hives attack on my ankles like I hadn't experienced in years. Benadryl was not getting rid of those suckers. Great. Was I allergic to something in the gluten free food now too? Come ON! Give me a break! I also packed on those same twenty pounds again. Everything I read told me this was normal, that my intestines were "healing" and food wasn't just running through me anymore, so a little weight gain was normal. I didn't like it, but I was feeling pretty healthy, other than the hives, and cupcake cravings, and didn't think I had any choice in the matter. I couldn't cut out all gluten-free food too, there would be nothing left to eat!  Right?...

I stumbled onto a Paleo/Primal eating website, Mark's Daily Apple, about this time too. He explained how all of these things tied together: insulin and weight gain, blood sugar and food cravings, that our bodies respond to wheat products the same way they respond to sugar products. It was like pieces of the puzzle falling into place, why not eating (sugar crash) led to migraines and fatigue for me, but also why eating (wheat and sugar) was giving me headaches too. Suddenly there was a comprehensible PATTERN to my various weird assorted illnesses. I started following this theology and very quickly, like within days, my ankle hives went away. 

I've been "Primal" for about three weeks now, as consistently as possible. I've been migraine FREE, lost seven pounds, had great digestion, and enough energy that I actually look forward to a little bit of exercise (I have never been an exerciser, so looking forward to a little bit is a pretty huge step for me.) The other day, at 3:30pm in the afternoon, I walked by a co-workers office and she had just put out a bowl of chocolates. I came close, but the craving was weaker, and I was able to go back to my desk and eat some olives, and the craving passed altogether.

Eating out is trickier than ever. I went out with my boyfriend and his mom, and we shared a gluten-free pizza. I was hoping to get away with a little cheat, in an attempt to get along and go along without making much more of a fuss than I had too (I had already put a cramp into the plans because I was afraid I wouldn't be able to eat anything all at "Noodles"). I had hives on my ankles before I even made it home that night.  Then, just a few days ago, I met my brother and his wife for dinner. I got a salad with the restaurants "home made" greek dressing. I didn't ask what was in the dressing, again hoping that if it were anything bad, it would be in such a small amount that my body wouldn't notice. Migraine the next day. Milder than those in the past, but strong enough that I had to pop some migraine meds and a Benadryl. Son of a gun.

On the Marks Daily Apple website, some regulars had posted comments about "Enterolab". A lab ran by a reputable physician, who were able to tell by a stool sample whether you were having a negative intestinal reaction to a whole host of food items: gluten, eggs, chicken, beef, tuna, nuts, rice, oats, and a bunch of others. It was pretty expensive, around $500 for the whole gamut of testing, or half that for half the testing. I checked with my doctor, was this real? was it a scam? It was very real, he said, in fact he recommended it. But, by the way, insurance probably will not cover it. I could have the results sent to him so we could discuss it together. I put the idea on hold, until I realized that I was wasting money every time I bought some food item that I thought I could eat and then suspected I had a weird reaction to it. It was time to KNOW once and for all, what can I eat and what I can't. I didn't want to spend the mental energy sorting this out anymore. I will be 35 in a month and it is time to have some answers. I ordered the test.

Last night I went to a wedding and the only entree option was a breaded chicken breast. I had to pass it along to my boyfriend in exchange for a double helping of his and my green beans. I had to pass on the salad too, as it was covered in some kind of dressing that looked suspicious to me. Two glasses of wine and a bunch of green beens, recipe for disaster (Did I mention this was the first time my boyfriend was meeting my parents?) I couldn't wait to get home so I could eat "safe" food.

So that is where I'm at, awaiting the Enterolab results for my list of can and can-nots, and trying to eat primally while I await them.

I decided to start this blog, chronicling my journey for one important reason. I know I'm not only one with this weird variety of symptoms who is desperately searching for any information that can help take them away and give them their life back. In my years of searching for an answer, I saw so many comments or postings at various sites on the internet saying "I just developed geographic tongue and doctors don't have any answers. Please help!" or "This is the third week I've been unable to sleep due to itchy hives on my ankles and no one has any answers-- any help out there??"  I'm not a doctor (though apparently being one doesn't guarantee you will have any of these answers either) and I'm still in the process of figuring it all out, but I promise to continue to journal-blog any health information I glean and hopefully together we can find some answers.


  1. This comment has been removed by the author.

  2. Hi Primal,
    Sorry to hear what youve been going thru but everything has a solution. Dr cure the symptoms not our causes.

    Heres my opinion to your story & i like a list 2 the foods that help u

    Symptoms from your story:
    Long term migraines & digestive conflict, insomia, due to hives, hair loss

    More H20 needed 4 dehydration. It sounds to me like a virus. In some cases stds or maybe an infected needle. People test but a virus takes years for positive results.

    The solution its curable. The body just needs the right bal of nutrients to reverse the underlying cause.

    Drs dont want their patients 2 know it ruins their ER cost but if u want to change your life. I can advise u what u can do.

  3. Yes! I have migraines and gives and never made the connection. Please continue to post your results. I, too, have tried gluten free, caffeine free and magnesium. I need to figure this out! Thank you for posting!!!

  4. Try fish oil without mercury capsules & vit c

  5. I think you just wrote MY STORY, migraines, geographic tongue, all same symptoms and years of no answers. MINE WAS NOT GLUTEN, IT IS dyes and artificial ingredients! The dyes on benadryl pills made me even sicker. There are over 80 hidden names for dyes alone!