Take Migraines Personally

I’ve had headaches as far back as I can remember. I’ve officially had migraines for 36 of my 55 years. My first clinical diagnosis was migraine. Over the years, although I have not changed and my migraine has fundamentally not changed, this diagnosis has been changed to the following:

• Migraine
• Migraine without aura
• Neurologically complicated migraine (without aura)
• Migraine (again!)
• Chronic migraine
• Vestibular migraine
• Chronic vestibular migraine

What the diagnosis doesn't tell me

All these changes simply highlight the fact that the brain is largely unknown. For me it also highlights the fact that it doesn’t matter what they call it, I still have it, although vestibular migraine seems correct for my situation. What’s more important for me is to understand my personal migraines, regardless of what category medical professionals want to use. They may have an umbrella term for what I live with, but I have very personal sub-categories for my migraines.

How I categorize my migraine attacks

My migraines are basically an electrical storm in my head. I’ve had two different neurologists theorize that if the storm was stronger, it might be epilepsy rather than migraine, which is also why anti-seizure medications work so well for me as a daily preventative. Even so, it depends what part of my brain is engaged in this storm that drives the migraine reaction and much of this depends on the trigger. For me, each migraine feels different based on the root cause, Knowing the root cause helps me manage the way my brain is reacting.

Since there is no cure for migraines, only management, I personally think it’s exceedingly important for everyone with migraine to track exactly what’s happening to them when. This will help develop strategies for avoiding triggers and managing triggers that are unavoidable. Below is a list of my personal migraine sub-categories and what I do to try and manage what’s happening to me.

Headache

We all know there are regular headaches and there are migraines. These things are not mutually exclusive. Even though I have migraines I still get regular headaches. For me, a regular headache is typically caused by other illnesses, like having a headache with a head cold. Even though I don’t really have seasonal allergies, if the pollen count spikes into the red for more than a day I may get a mild headache. These may be treated with aspirin for me, if they needed treated at all, after all, having chronic vestibular migraine has given me extremely high pain tolerance. A “regular” headache barely registers with me. It’s a vague, diffused sort of head pain that rarely gets to a two on a pain scale of one to ten.

Weather attack

Unfortunately I’m a human barometer. I kept a weather/migraine journal for years. As it turns out, about 36 hours before the storm gets within fifty miles of me, I start reacting to the barometric pressure changes. My vision slowly gets blurry. My leg muscles start aching or cramping. There’s a pressure wrapping around my brain that really isn’t terrible, it doesn’t feel like it needs medication to help manage it, but if I don’t medicate the pressure begins to tighten down and starts pounding on the right side of my head – which admittedly doesn’t happen much anymore because, thanks to keeping a migraine journal, I understand the warning signs. Even before I feel like I should be taking medication I take it anyway. As we’ve all experienced, you must stay ahead of the situation, if you wait too long to take a medication it’s not going to work as well.

Food attack

For me, food migraines are the worst. Thirty-some years ago I did the easiest-yet-hardest thing to figure out food triggers, I went on a completely bland diet to clear my system. For three weeks I ate completely neutral food. For me, it was three weeks of white rice, eggs, and regular oatmeal, while drinking nothing but water. After three weeks I started adding back foods every other day or so, depending on whether I had given myself a migraine. Chicken? Good. Red meat? Good. Onions? Good. Soy/Soybeans? Okay in small amounts. Banana peppers? Bad. Tree Nuts? Worse. Chilies? Horrendous. Eventually I developed a personal food list of dos and don’ts. Was this an extended test of what not eat? Yes. Was it annoying? Yes. Was it worth it? Yes. Do I still find new or different food triggers? Yes, unfortunately.

The pattern

For me, food migraines have a very specific pattern and last three full days. It doesn’t matter if I medicate, although the medication reduces severity, it doesn’t stop my reaction.

1. Day One: Four to six hours after I’ve ingested a trigger (it could be as little as one bite of some things) the diarrhea starts and will last twelve to twenty hours. This may also involve throwing up. Throughout day one the pressure in my head builds until it starts to pound. It has the undertones of a serve allergic reaction, as if my body is trying to purge the food. In fact, someone once suggested taking Benadryl with my acute migraine medication and, after speaking with my pharmacist, I tried it and I must admit it works to reduce the reaction.
2. Day Two: Pounding in my head accompanied by light and sound sensitivity of varying degrees. One of the strangest things that sometimes happens to me is I can feel my eyeballs moving in my head during day two.
3. Day Three:The pounding reduces to pressure in my head and the nausea starts. I always think I might throw up on day three, but I never do. I just feel worn out and sick to my stomach with vague pressure deep in my head.
4. Day Four: I know I said my food migraines last three days – three days of active illness. On day four I continue to take anti-nausea and pain medication. This seems to abort any lingering reaction and allows the food migraine to end completely rather than lingering on in an extended postdrome.

Alcohol attack

My alcohol migraines are not hangovers. Basically, one swallow of most alcohol triggers a pounding migraine. Wine is the worst by far. Wine gives me a headache so terrible that at first, I think I’m going to die, then I start worrying I’m not going to die – at least until the medication kicks it. This is why I avoid most sauces when dining out, you just never know when a splash of wine has been added. Really, it’s not the wine per-se, it’s the fermentation and the mold that triggers me. Occasionally I can have a bit of pale ale, but nothing darker, and never liquor.

Fermentation attack

My fermentation migraine follows the trajectory of a somewhat mild food migraine. It’s not a food migraine though, because it’s not the food, it’s the fermentation. It’s the process of aging the food and the mold involved. To this day I still get caught on this occasionally.

Fermented foods triggers

For example, I had no idea capers were fermented until I had what felt like a mild food migraine after eating a bagel and lox sandwich with onions, tomatoes, and capers. I knew everything but the capers were fine so, by process of elimination it had to be the capers. A quick internet search taught me they’re fermented. No more capers, or olives for that matter, which are also fermented.

The same thing happens to me with soy sauce. As it turns out, that’s supposed to be fermented, but oddly enough, if it’s cheap (or fake) soy sauce that has barely been fermented (like from my neighborhood Chinese takeout dive) I can have it. If it’s good stuff, it’s not for me. Nor is anything with the word sour in its name. Sour is an old term for fermented, which I learned the hard way. So, no sourdough bread. No sauerkraut. But, oddly enough, sour cream, which is only fermented for about a day, is okay.

What about cheese?

For me, it seems to be the amount of fermentation that’s the base issue. Which can be tricky, because there are things I really want to have, like aged cheese, but it can be a problem, or it cannot be a problem depending on the level of fermentation / mold growth – it’s a dangerous roll of the dice.

Aged attack

The aged migraines are going to sound familiar to anyone who has had migraine for more than about 15 years. Apparently as I change with age so do my migraines. Does some of these changes have to do with better treatments? Of course. But some of it seems to the migraine aging along with me. For example, I started getting leg cramps and other vague muscle tightness about 10 years ago. For the 20-some years prior to that muscle cramps were never an issue. Same goes with the classic pounding migraine – I used to get that all time -- now it’s often a tight pressure deep in my head instead. After almost 30 years of almost no vision issues, an aura I now have is blurry vision. Why the changes? I have no idea. I just know they’re happening and it seems to be the neurological condition changing over time as my brain changes with age.

Be your own advocate

The most important thing to remember about a condition with no cure, only management, is you have to be your own advocate and to do that you have to know exactly what’s happening when. Always remember, be it about yourself or medical information about migraines in general, knowledge is power.