This story starts almost ten years ago when I had my very first migraine with aura. I was in the middle of administering the Woodcock Johnson to one of my students and I had to stop abruptly because I couldn't see the book. When I called my mom, distressed about the fact that I was most likely dying, I learned that I had experienced the exact aura that my dad and brother periodically experience. So, up until two years ago, I would have a crazy visual distortion followed by a dull headache and car-sick type nausea around once a month, sometimes twice. Nothing huge.
So what happened two years ago??
I can't pinpoint exactly when, but my textbook monthly migraine with aura took a pretty drastic turn. Most doctors couldn't look past the fact that it happened around the time I stopped taking hormonal birth control - - but I distinctly remember going off the birth control in the hopes that it would HELP all the nonsense that I was going through. So what was the nonsense? Here is an overview of what I was dealing with, occasional at first but then growing to a near-constant basis:
- Shaking hands, nearing tremor status at times
- Buzzing ears
- Crazy deja vu with immediate rushes of pain afterward
- Facial twitching - especially in the forehead and near the eyes
- Darkening of my field of vision, as if I had just come inside from being out in the bright sun
- My entire field of vision would shake, as if the room was spinning.
- Nausea
- Difficulty speaking (my students would often have to complete my sentences for me)
- Way more head pain than my typical migraines
- Sensitivity to noise and light
- Mental fogginess (I'm glad that my bosses didn't know just how useless I was in the paperwork department some days... I did hand over the instruction of my students to my assistants on my really bad days)
- Slow reaction time (there were some days when I felt like I shouldn't be driving)
- An overall feeling of shakiness/buzzing
On top of all that, I was still having my usual migraine with aura, but much more frequently.
Let me stop right here and say that I am not sharing this information for a "woe is me"-type sermon. I know that my medical concerns are mild to nearly nonexistent compared to what others have to experience. There is a reason for this story, so stay with me...
The above symptoms didn't start all at once, but fairly gradually over the course of about a year until I was experiencing nearly all of them daily and on a near-constant basis. I felt like my brain was short-circuiting. That's when I finally went to a neurologist: April of last year.
NEUROLOGIST #1 - My GP referred me to a local neurologist. She listened to my laundry list of hypochondriac-sounding symptoms and felt like we should have an MRI to rule out anything serious (she felt like it was probably migraine). The MRI/MRA came out clean - no scarring, no evidence of seizure, things looked great. So, it looked like the suspicions were correct - - I was having crazy migraines. At this point, the medications began. I was put on Amitriptyline (an anti-depressant that is often used as a preventative medication for migraine) and I was also given Imitrex to take at the onset of a migraine. (I was thinking "Onset?! It's happening all the time!") The Imitrex was horrible, so I only took it a couple of times. The Amitriptyline seemed to help my textbook migraine auras but didn't do anything for my laundry list of other symptoms. Plus, it made me a walking zombie. I had absolutely no energy and was VERY moody. I gained at least ten pounds on this medication. When I brought my concerns to my neurologist during one of my five-minute, $300 check-ups - she just wanted to start experimenting with other medications. I was still interested in WHY things were the way they were, so at that point I referred myself to a neurologist in Portland toward the end of the summer.
NEUROLOGIST #2 - This neurologist was awesome and very attentive to my concerns about WHY things were happening. She referred me to a headache specialist in their practice to help us sort out what was migraine and what, if anything, was NOT migraine. She said that if anyone could sort it out for me, it would be this doctor - - he sees migraine all day, everyday. She also asked me to stop my current medication in case some of my symptoms were actually side effects of the medication. So, while I counted down the weeks until my appointment, it didn't take long for whatever symptoms were being suppressed by my first medication to return with a VENGEANCE. I could barely function at this point, so I called my neurologist, begging for something else to try. She started me on a beta blocker typically used for high blood pressure. I had more energy with this medication, but I couldn't do anything with that energy because, if I moved too suddenly or quickly, I became light headed and short of breath. I stayed on the medication until I went to the specialist.
NEUROLOGIST #3 - I won't go into details, but my first visit to this doctor was definitely my last. Although, for as difficult and frustrating as the appointment was, he left me feeling kind of hopeful. He said that a lot of my symptoms weren't migraine, but could be something more physiological. He dropped the term "fibromyalgia" which didn't excite me, since I knew that wouldn't quite give me the closure I was looking for. HOWEVER, I felt like I could continue to work with neurologist #2 to find that physiological cause of my symptoms.
BACK TO NEUROLOGIST #2 - We sat down the go over the report and it just solidified that doc #3 was a complete waste of my time. His report referred to psycho-social causes (mainly stress) as his guess about my other symptoms and said NOTHING about possible physiological causes like he had said to me in our appointment. My neurologist decided to go off of his recommendations and continue to treat ONLY my migraine with aura and judge our treatment choices based on the control of that one symptom. So how was my blood pressure medication controlling my migraine with aura? I was still having them almost weekly and the medication left me with a blood pressure of 99/60. Needless to say, she prescribed me a new medication (this one was a medication typically used for bipolar disorder - have you pieced together the fact that there is currently no preventative medication intended solely for migraine? Migraineurs just have to try any medication they can in order to stumble on one that will mess with their brain in just the right combination). So after this appointment, I cried all the way home from Portland, completely discouraged and feeling like a hypochondriac.
At some point during this journey, I knew that I would never be happy taking a medication my entire life until I had exhausted every other option, so I tried migraine trigger elimination diets, migraine-friendly herbs and supplements and known migraine "superfoods". I didn't notice a big difference with any of my symptoms. I also eliminated MSG and anything chemically related (it's a long list and basically eliminates any processed food with "natural flavors" in the ingredients list). I knew that I was sensitive to MSG and felt like this could help. It definitely helped control some of my day-to-day head pain but didn't touch the other symptoms.
Throughout my drama with neurologists, I was serving in church with a sweet woman who had her own experience with neurologists. She also had a daughter with gluten ataxia, which was the first time I had ever heard of a neurological connection to a gluten sensitivity/allergy. She also shared the name of her acupuncturist and had several other ideas that left me hopeful. I decided to cancel my follow-up with my neurologist and decided to not start the medication that she had prescribed. It was time for a different route. I set up an appointment with an acupuncturist and also researched the connection between gluten and neurological symptoms. That's when I came across articles like this one, that connected the dots between MSG (and other free glutamates), gluten, and neurological symptoms. Since I knew that I was sensitive to MSG, I now felt like it wouldn't be too far-fetched for me to try a gluten free diet.
Now the big question was....do I need a doctor to verify a gluten sensitivity before trying the diet (because I had read that you should be eating gluten in order to test for a sensitivity) or do I just dive right in? Since this journey had already set me back over two thousand dollars, I decided to give it a try first. I didn't want to spend a bunch of money on specialized foods (most of those gluten-free products on the supermarket shelf still contain ingredients on my need-to-avoid list anyway) so I stuck to a mainly whole-food diet for the first little while. I was also seeing the acupuncturist during this time. Things started to change slowly - I didn't realize it until I looked at the calendar that so much time had passed without symptoms.
It has been almost six months since I went gluten free. I haven't had an aura in almost four months (without any medication!) and literally ALL of my other crazy symptoms are gone or extremely rare. I haven't been to the acupuncturist in about three months and I am starting to feel a little "off", so I know that acupuncture was helping with some of my symptoms. However, I feel safe in saying that the bulk of my symptoms were being caused by gluten. Am I going to go back on gluten so that I can have a sensitivity officially diagnosed? No, it's definitely not worth it to me. The current treatment trifecta that I have going on - the "MSG"-free diet, the gluten-free diet, and acupuncture - has me feeling like a whole new person.
The point of this story?? After finding my own "light bulb" articles online, I always feel strangely obligated to share my own experience (remember the spica cast blog entry??) in case there is someone out there as frustrated as I was.
So there you have it...Long Story #1: The story of my no-longer-aching head and why I am now in the GF crowd.
Long Story #2 should be coming soon. :)
So there you have it...Long Story #1: The story of my no-longer-aching head and why I am now in the GF crowd.
Long Story #2 should be coming soon. :)
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