For the past three weeks, I’ve had a migraine almost every single day. If it’s not there when I get up in the morning, it’s there by 3 p.m. By 6, I can barely eat dinner with my family. All I want to do is crawl in bed and sleep. But, I can’t.

Even if I’m able to make it to bed (instead of trying to power through one more project), the pain is too intense to sleep. So, I watch a dimly lit movie or TV show on my iPad (very quietly), until I get exhausted enough to fall asleep in spite of the pain.

I can’t read. I can’t spend time with my husband or my daughter. I can’t think. I can’t do anything, except survive the migraine and hope it’s gone by the time I wake up.

I’m trying to stay grateful. What I’m experiencing now isn’t as bad as what I went through in 2008. I don’t have one every day, and it’s not a constant level 7. But, I fear it’s getting there. The migraines are coming closer together, and I’m terrified that I’ll be locked in that old cycle once again.

Worse, because my husband and I are still trying to have a baby, there’s little the doctors will do to help. It’s been almost a year since I went off birth control and quit most of my migraine medications, and we’re not pregnant yet. If the doctors won’t help now, how will I possibly make it through the months of pregnancy and breastfeeding – whenever they finally arrive?

I feel like I’ve tried everything, but there must be some medications or treatments out there that have passed me by. Does anyone have any suggestions? I haven’t tried Midrin, though I’ve heard there’s a manufacturer down here in Texas who is making an equivalent now. Have any of you tried it? Did any of you take it while you were trying to conceive?

These include the ability to:

• Commit to any high-stress job that requires long days in a typical office environment. This means many things I would love to do – such as going to law school and working as a PD,  going to grad school and finishing up my neuropsychology degree,  or opening my own financial management consulting firm for small businesses – are potentially out of the question forever. Fluorescent lighting, varied sleep schedules, and long, long hours all mean increased migraine.
• Make promises to my daughter about future events. Some days the migraine comes on full force, and there is nothing I can do to stop it. It doesn’t matter if she’s in a play, or has an award ceremony, or wants me to attend a field trip. I can’t do it. And, knowing this can happen, that I can be completely disabled at a moment’s notice, I don’t promise it. But, I wish I could.
• Pack my calendar. I can get a lot of stuff done in one day. I can write five articles, edit three chapters of a book, read two newspapers and two trade journals, research a big project, enter two poetry contests, help my daughter with homework, go to dance class, make dinner, balance our budget, pay bills, and spend quality time with my husband, all in one day. IF, it’s a good day. But, if it’s a bad day, if the migraine kicks in by 7 a.m. and ramps up to a level 7 or 8 by noon, I’m lucky if I get even one of those things done – let alone all of them. So, while I can crowd a lot of stuff into one day, I have to leave room for the bad days. And, this means planning for less than I feel I can accomplish, just in case some (or all) of tomorrow’s scheduled work has to be pushed off until the next day. And, I hate that.

There are, of course, more things that could be added to this list, but these are the big things. The things that make me feel less than able even when I don’t feel dis-abled. These are the things that remind me, on a near constant basis, that I am, in fact, chronically ill. And, on some days, I really, really resent that.

What about you? I know I’m not alone. What has migraine disease left you feeling less than able to do or accomplish?

Does our inability to identify a trigger mean we don’t have any sensitivities to food? Or does it mean that our sensitivities are either so subtle or so widespread that to identify them through a migraine diary is close to impossible? Many specialists and some migraineurs are beginning to say it’s the latter.

In a Huffington Post article published last year, Dr. Leo Galland wrote that food and drink triggers were the migraine triggers over which migraineurs “have the greatest control.” Not by avoiding certain chemicals in food, which Dr. Galland says has not been proven to reduce migraine frequency, but by avoiding foods that trigger our individual immune systems. But, how do we identify those foods? Dr. Galland and other experts say IgG testing may be the answer.

IgG testing is a particular kind of food allergy testing. The premise behind the tests, according to Sheryl B. Miller, Clinical Laboratory Director at Bastyr University Natural Health Clinic, “is that high circulating levels of IgG antibodies are correlated with clinical food allergy signs and symptoms.”

“These tests, one might extrapolate, would help the physician pinpoint food allergies in their patients so that patients might avoid these foods and their associated signs and symptoms,” wrote Miller in an essay. “The ELISA/EIA test itself involves coating a 96 well plate with food antigens, adding a patient’s sera and looking for a classic antigen/antibody interaction. In addition to the IgG antibody detected in most of the newer commercial assays, some companies also detect IgE.”

Despite various experts’ enthusiasm about IgG testing, however, little scientific evidence existed to suggest that using the tests for migraine prevention actually made a difference in patients’ experiences. Recently, that changed.

A 2010 Turkish clinical double-blind, randomised, cross-over trial was conducted on 30 participants diagnosed with migraine without aura. The trial aimed to discover “the effect of diet restriction, based on IgG antibodies against food antigens, on the course of migraine attacks.” The researchers found that eliminating specific foods with raised IgG antibodies significantly reduced the number of migraine attacks experienced by the participants over a six-week period.

“These findings make evident that food can trigger or worsen migraine attacks in susceptible individuals, and also that it is an individual-specific problem,” wrote the American Migraine Foundation in a statement about the study. “Given that migraineurs can have different foods provoking their attacks, and the extent to which food plays a role in migraine varies between persons, this study also demonstrates that blanket recommendations that all individuals with migraine follow the same diet are not very helpful.”

Unfortunately, many insurance companies won’t pay for the IgG Food Allergy Test because they claim it isn’t “medically necessary.” Without insurance coverage or reimbursement, the tests can be quite expensive. If any of you readers have taken this test, did your insurance company cover it? If not, why did you decide to shell out the bucks? And, most importantly, was it worth it?

When I think back on 2011, that one word says it all. In addition to life’s little, daily stresses, there was a marriage (mine), three deaths (my mother’s and two cousins’), and a (probable) miscarriage. Deadlines were (mostly) met, yet rarely achieved early, and of course there were the migraines. All in all, it was a hell of a year.

There were, of course, several great accomplishments as well. My daughter finally found her “fit” in school, and my husband settled into his groove at work. I ghostwrote my first full-length book, edited another one, and published two new poems. I also made my way into several new publications, and doubled last year’s income. Both my client base and my writers’ network are growing steadily, and I even hired an assistant to help me manage my workload.

Still, I’ll be happy to see 2011 turn into 2012. It isn’t often that I feel such relief at a year’s end, but this year has – in all honesty – outstayed its welcome. I’m ready for new challenges, new obstacles, new joys, and a new year. How about you? Will you miss 2011? Or are you, like me, eagerly awaiting 2012?

A headache specialist finally serves my area. I typically prefer female doctors, but every headache specialist I’ve ever encountered has been male. This one was no different. What was different, however, was I didn’t have to drive over three hours to see him. And, he came up with a treatment plan (that didn’t involve a million medications I’ve already tried) within the first visit.

Unfortunately, it was a treatment plan I can’t commit to following.

Dr. G. believes I may have occipital neuralgia, which is complicating my migraines and triggering them more often than they would otherwise be triggered. However, the only way to diagnosis the problem is to treat it, and see if the treatment works.

I’ve actually been down this path before. In 2008, a pain management doctor believed the same, and gave me a single occipital nerve block. It didn’t help, and so we didn’t repeat it. Dr. G. believes we may have given up too early or that my migraine (which lasted from mid-2007 to mid-2009) was too entrenched to shake. A nerve block now might provide some relief.

But, I can’t take it, at least not without putting efforts to conceive on hold for at least two months. The nerve block includes a steroid, which is contraindicated in pregnant women. The steroid remains active in the body for up to two weeks. If I need two, they’d be given at least three weeks apart. Therefore, Dr. G. won’t do it unless I agree not to get pregnant for at least two cycles.

I’ve decided I’m not going to do that. So, I’ve been digging for natural treatment options that could relax the neck muscles and perhaps provide some relief. I’ve also been trying not to spend hours and hours at a time reading or typing with my head at a downward tilt. (Apparently, that aggravates the nerve.)

So far, I’ve read that massage, heating pads, and meditation may help relax the area and calm the nerve. I’m interested to hear if any of you suffer from occipital neuralgia, or migraines triggered by occipital neuralgia. Do you have any tricks for relieving the pain? What works for you?

Teri’s “10 Things I Want to Share About Migraine” is a sort of cheat sheet for those conversations. Here’s an excerpt:

“1. Migraine is a genetic neurological disease. Although the cause and pathophysiology of the disease is not yet fully understood, current research indicates that it’s caused by genetics and overly sensitive neurons in the brain that fire in a wave when someone with Migraine disease encounters a Migraine trigger. At this time, there is no cure for Migraine disease. 2. According to the World Health Organization, a severe Migraine attack can be as disabling as quadriplegia.” (For more, read the full post here.)

I’m going to print out Teri’s post and hand it to my husband the next time he asks me to explain migraine. Does anyone have any other facts they feel should be included that Teri left out?

iHeadache – I’ve posted before about my love-hate relationship with migraine diaries. Luckily, this little app is always available, full of information, easy to use, and (best of all) unobtrusive. I use it to record the time, length, and severity of any migraine attacks, along with medications used (if any), suspected triggers, and level and length of disability. In addition to its use as a great logging device, this application can also generate useful reports to be printed out or emailed to health care providers.

iPeriod – While this app is designed to help track a woman’s monthly cycle and fertility, it also includes a handy “migraine” button under “symptoms,” which lets me see at a glance if and how my migraine attacks relate to my monthly cycle and my hormonal changes. Women who experience menstrual migraines might find this particularly helpful.

American Migraine Foundation App – This app includes a “diary” function, but that’s not why I use it. In addition to its easily accessible MIDAS Test assessment, the app streams AMF articles that keep users up-to-date on recent migraine-related news.

I think most of the apps are also available for the iPhone, but I’m not sure. If any readers out there have heard of or use an app not mentioned here for migraine management, I’d love to hear about it.

I don’t have a clue. That’s the problem. As regular readers will recall, my migraine attacks have become increasingly frequent since around the beginning of August. The summer heat combined with the stresses and lack of sleep inherent in the beginning of the school year (when both my husband, a teacher, and my daughter, a third grader, return to their daily grinds) equals a full blown attack by about 3 pm almost every day. An attack which my husband frequently describes as “a headache.”

Migraineurs know that “a headache” doesn’t even begin to explain or describe a migraine attack. There are a number of other symptoms besides pain that present during an attack, including nausea, lethargy, visual disturbances, disruptions of speech, light sensitivity, noise sensitivity, appetite changes, and more. But, they change (at least mine do) from attack to attack, which means every migraine episode is different from the one before – sometimes dramatically different. In addition to the myriad symptoms of an attack, using the phrase “a headache” to describe the intense, ice-pick-like stabbing pain of a migraine seems almost laughable. And, while I know he was trying to be understanding about my pain and the fact that I was ill, the lack of overall understanding apparent in his description left me feeling weak and discounted. After all, what kind of a wuss can’t handle “a headache”?

This is, perhaps, one of the most frustrating aspects of living with an invisible illness. I’ve tried telling him to research it, but there’s so much nonsense out there written by people who don’t really understand what it’s like that it seems futile to just direct him to the internet at large. What do you do? What helps you explain your illness to others?

In February, I began taking magnesium and coenzyme Q-10 supplements for migraine prevention/relief. In addition to my standard multi-vitamin (which includes 200 mg of magnesium), I take 100 mg of CoQ10 three times per day, and 250 mg of magnesium once per day. (The recommended dosage in “The Migraine Brain” was 400 mg of magnesium daily, but I was unable to find 100 mg tablets.) I also recently added a 100 mg B2 supplement.

So far, I haven’t experienced any reduction in the frequency of my migraine attacks, but I have noticed a decline in the pain associated with my attacks. What used to be a standard 5 to 7, is now a 3 or 4 on a normal day. Some days are worse, of course, and I still get my sharp stabs of intense (7 to 9) pain, but the overall pain levels are down. This is good news.

As a chronic migraineur, I’ll take what help I can get, where I can get it. If I’m going to keep getting the attacks, at least they’re less painful. And, all in all, this is pretty much the same improvement I experienced on Topamax – without the mood changes, weight loss, and forgetfulness.

I’m interested to learn what the rest of you have experienced. Have you taken magnesium or coenzyme Q-10 for migraine prevention? What happened?

Unfortunately, while heat is a common enough trigger for migraineurs, there isn’t much we can do to control it. I do my best to stay indoors whenever the temperature exceeds 100 degrees, but it doesn’t seem to help. It’s almost as if my head is aware of how hot it is outside, even if I’m basking in a temperature-controlled room of 70 – 75 degrees.

And, it looks like I’m not alone. Emergency room physicians report that the number of migraineurs seeking treatment in the ER increases when it’s hot, though they’re not quite sure why. And, in Boston, researchers have discovered a 7.5 percent increase in the chance of an attack with every nine-degree increase in temperature.

Some experts have suggested the real culprit is dehydration, but I think I drink plenty of water. Bright sunlight can also be a trigger, so I do my best to wear sunglasses and a hat every time I leave the house. Again, nothing seems to help. So, for now, I’ll resign myself to hanging out inside – a bottle of pain pills to my right and an ice pack to my left – as I eagerly await the cooler days of late October.

How about you? Do you experience more migraine attacks or higher levels of pain when it’s hot? How do you cope?