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2012: A Year of Remarkable Personal Migraine Progress

Exactly one year ago tomorrow, I had a massive breakdown. Sobbing, I proclaimed that I wanted out of this life. I didn’t want to fight anymore; I didn’t want to live with chronic migraine any longer. I even wished for cancer so that I could choose to not treat it, thus dying without technically committing suicide.

Today, my head pain is at a level 4, which is the highest the pain has gotten in a week. In the past four months, the pain usually topped out at a 5, occasionally a 6. Still far from comfortable, that’s way better than daily pain that hits a level 7 or 8, where I was last January. I don’t know how these pain ratings appear to anyone outside my body, but to me, pain reduction of even a single number is cause for celebration.

In the 11 years that chronic migraine has been the focus of my life, last year was the first in which I made significant progress in reducing the severity of attacks. I tried more than three dozen medications in that time and countless other Western and alternative treatments and diets, none of which had any effect. To see any progress is amazing to me; to now be at a place where I expect even more improvement than I currently have experienced is astonishing.

Though you’ve read about my progress through the year, here’s a summary of what’s working for me:

Magnesium: Although I had been on magnesium before with no success, I noticed an improvement  increasing the dose to 700 mg. After trying IV infusions to see if they would be more effective (they weren’t), I ultimately pushed my daily oral dose to 1,000 mg.

Cyproheptadine: The starting dose of 4 mg was enough for me to feel a bit better. Each 4 mg increase brought additional relief until I hit 16 mg, which didn’t seem to be any better than 12 mg. I’m back at 12 mg, though will probably try increasing it again, to be sure that I wasn’t just having a bad week the first time I tried 16 mg.

Diet: It has been a year since I started an extreme version of a traditional migraine elimination diet. Until a month ago, the diet was horribly frustrating. It seemed like both nothing and everything I ate were triggers. I wondered if there were other aspects of foods that I was unaware of that could be triggers. Then a reader mentioned that she feels better when she avoids foods with histamine. This started major research and an even more drastic diet to cut out amines and salicylate.

The initial improvement started to look like a fluke as the migraine attack severity returned to previous levels. A week ago, I switched from ground dark turkey meat to skinless chicken breast as my main protein source and the migraine severity dropped to a level 4. I’m still tweaking the diet and waiting to see a nutritionist. It will be a long process as I test out foods I’ve been avoiding, but I really think histamine and salicylate content in foods and body/beauty products is a major component of my debilitating migraine attacks.

I have so much more to tell you! There’s a detailed post about the diet coming later this week. First I needed to write this overview to remind myself of the massive improvements that 2012 brought. Sure, I still feel worn out and discouraged at times, but every little bit of progress shows me that chronic migraine is necessarily not a life sentence. A year ago, I was convinced I’d never escape that prison.

I was basically the prototype of chronic intractable migraine. (In a bizarre sort of way, that sounds like bragging.) Ten years with no improvement. Countless doctors, naturopaths and all manner of traditional and alternative health care providers have given up on me. I had given up on me. If I can see improvement, so can you. The struggle may be long and arduous, but there is always, always hope. Hang in there.

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Recommended Product: MgBright Magnesium for Migraine

I’ve recently switched from Bluebonnet chelated magnesium to a kind called MgBright, which the company describes as “pure, safe, non-laxative and high-absorbing.” The company sent me a sample bottle, which I tested for a few months, even increasing my overall dose during that time. As the bottle neared empty, I decided MgBRIGHT was OK, but no better than what I’d been taking before. When I switched back to Bluebonnet, however, I developed stomach cramping. While Bluebonnet was great at 700 mg, now that I’m taking nearly 1,200 mg*, it didn’t work so smoothly.

MgBright is offering a discount for The Daily Headache readers. The first 25 people who use the code TDHBLOG during checkout will receive 20% off the regular price of $49.91. You may buy it here. (I get no compensation if you buy the product. I tried it and liked it and wanted you to know about it.)

*This is a very high dose and should only be taken under the supervision of a health care professional! Actually, you should clear any dose with your doctor as many people with migraine need more than the recommended daily allowance.

Mar. 5, 2015: MgBright’s pricing has increased dramatically. It’s main ingredient is monomagnesium malate. Many companies now sell monomagnesium malate for considerably less than MgBright costs.

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A Little Relief, A Little Anxiety

One of my greatest fears is that I’ll find an effective treatment that will reduce the intensity and/or frequency of the migraines for awhile, then it will stop working. I’ve heard plenty of anecdotes about this, though I don’t know how often this happens percentage-wise. Just knowing it happens is enough to worry me.

After 48 hours of level 3 pain after my magnesium infusion, the pain increased with the onset of three-day storm on Saturday. I did not panic because I knew that a storm was likely to trigger a migraine even if I was overall improved. Sunday and Monday were a little better, but still mediocre. Another migraine hit Tuesday, right after the storm cleared. I soothed myself by remembering that many headache specialists say that weather changes are triggers for most migraineurs. (I mentioned this to Hart to reassure him — he was telling himself the same thing!) Today, though, I can no longer blame the weather. So the constant questions resume — Am I in postdrome? Will the magnesium infusion only last one week?

Over the weekend, I hadn’t begun to consciously worry about the magnesium infusion wearing off too quickly or not being as effective in the future; the concern was apparently below my consciousness. While napping Sunday in an effort to recharge myself to visit friends in the afternoon, I had a new kind of anxiety dream. It had something to do with getting to the end of the semester without attending or dropping a particular class, which is how anxiety usually manifests while I sleep. This time, I missed classes because the magnesium infusions were no longer able to bring the pain down to a level 3.

Usually I awake from anxiety dreams and am able to calm myself knowing I’m not currently a student. I know I’m probably worried about something, but am reassured that whatever got my heart racing in the dream was not real. This time the source of anxiety in the dream was not only a possibility, but culled directly from one of my greatest fears. I have elaborate, bizarre dreams that provide an amusing respite from my daily life. I’m unhappy that reality intruded, though so far I’ve only had the dream once.

I believe I’m finally recovering from the long weekend of migraines and am hoping, hoping, hoping that tomorrow I’ll again see the benefits of last week’s magnesium infusion. I can’t put into words how much I want this to work. I’ve gotten a glimpse of what life might be like with less pain and more energy and I want more of that. Please, migraine gods, please let me have some more.

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Defining “Better” & Improving Even More (I Think) After a Magnesium Infusion

I’ve been “better” since going up to 700 mgs of magnesium on February 7, but I, like always, am struggling to explain what that means. I met with my headache specialist yesterday and had to encapsulate my improvement in a short, concise statement. I said that the severity and duration of the migraines has lessened, but I haven’t noticed much difference in my quality of life. That I definitely feel better, but that hasn’t translated to increased productivity. (Not productivity as in producing widgets in a factory, but in getting my butt off the couch and getting basic things done.)

I know I am better because I can usually shower without having to rest afterward. When I do have to take time to recuperate, like Wednesday night, it seems that 10 minutes of rest is sufficient for me to then put on lotion (a huge chore when I feel bad) and get dressed. It has been more than a month since I’ve had to drag myself straight to bed post-shower. This is a major quality-of-life improvement for me, though not one that really leads to increased productivity.

The numbers from my headache diary show major improvement. The headache specialist looked the diary over and also remarked on the improvement. I have only hit a level 8 once since increasing the magnesium and it was for 10 very long hours. In an average week, I reach level 7 three times and it stays that high for about three hours. Compared to level 8 at least once a week and level 7 six hours a day, five days a week, the improvement does qualify as “major.” Unfortunately, when the baseline is “feeling-like-hell-and-can-barely-get-off-the-couch,” even major advances don’t take me very far.

Though the pain levels have improved, I’ve been struggling with significant nausea, fatigue and lethargy. The nausea may be the magnesium or it may be coincidence. The fatigue and lethargy may be migraine or the effects of Amerge, a triptan that I’ve started taking a lot more now that I’ve identified an occasional visual aura. Sorting out symptoms of the disease from side effects of the medications used to treat the illness is so complicated!

I took all this information to my headache specialist and his first reaction was, “Let’s give you an infusion of 1,000 mg of magnesium and see if that’s really what’s helping you.” I was thrilled and a little afraid: What if the magnesium, which I’ve regarded as magical, isn’t actually helping and my improvement is an unexplained fluke? On the other hand, maybe magnesium really is what my body needs and going in for weekly infusions will be the trick to getting my life back. With every new treatment, I try to keep myself from getting overly excited about the possibilities, though the secret hope is always that this will be “the one.”

Though getting an appointment at my headache clinic involves waiting lists, phone tag, and sometimes months of waiting, treatments move quickly. I was in the ambulatory infusion clinic an hour later and Marian the nurse was wrapping her lucky tourniquet around my arm. She claimed to sacrifice a chicken every morning to make the luck hold, but perhaps the ritual went awry yesterday. The first attempt at putting in the IV didn’t work and, following descriptions of my vein rolling under the needle (ick!), she had to try a second time. Once it was in, all I had to do was lie back in the cushy recliner, pull up the heated blankets (I seriously wonder how much a blanket warmer would cost), and play Words With Friends for an hour.

At the start of the infusion, the pain was a level 5 and I was tired and nauseated. We’d left the house at 8:20 a.m. and I had awoken with a migraine. I had managed to eat a few crackers so I could take my morning meds, plus I’d taken an Amerge and a Zofran, both of which make me sleepy. At the end of the infusion, the pain was down to level 4, but I was even more tired and had added grumpy and hungry to the list of complaints. I wasn’t sure if the magnesium infusion had done anything and was too scared of the potential ramifications to think much about it.

My sweet husband drove me home so I could eat and nap. As I fell asleep, I imagined the magnesium coursing through my veins, spreading out into my cells and improving their function. The cells, wearing party hats and throwing confetti, were drunk on mineral fortification. I woke from the nap with my pain at a level 3, where it stayed until 9 p.m., at which point it dropped to a 2(!). Today, I’m back to a 3, even through another aura (and Amerge and nap).

Could magnesium be the white knight who sweeps me off my feet and makes my dreams come true? Are my expectations too high this early in the relationship? If I let myself fall head over heels, will I pay the price in heartbreak?

OK, Kerrie, take some deep, soothing breaths and let go of the “what ifs.” I’m going to enjoy this respite for what it is, however long it will last. On the agenda: Prepping for a barbecue and making ice cream with friends tomorrow, drafting a blog post on the business Hart and I are starting, exercising, showering, enjoying the delightful smell of orange blossoms, and whatever fun activities strike my fancy.

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Postdrome (Migraine Hangover) into Prodrome and Repeat

Part 1
“Did anyone get the license plate of the truck that ran over me?,” the mom of my best friend in junior high used to ask when she was sick. That’s what I’m wondering today as I’m in a migraine hangover that has me feeling completely wrung out. Magnesium hasn’t brought me out of having chronic migraine, but it is no longer nearly constant. The experience of discrete migraine attacks and migraine hangovers instead of having one continually run into another is interesting.

Saturday brought the worst migraine I’ve had in awhile. It was a level 8 when it woke me up at 4:30 am and still an 8 when I awoke at 10. It remained at that intensity until 3 pm, then slowly tapered down to a 5 by 10 pm. Sunday, I was tired, dizzy, woozy and headachey. I wasn’t sure if I was experiencing the prodrome of another migraine or the postdrome of the previous day. I was pleased to discover that it was the latter, as we had people coming over in the afternoon for a barbecue. I felt decent and social from 3 pm to midnight, at one point even wondering if my pain was at a level 1! Then another migraine in the night and now, at 3 pm the next day, I am groggy, exhausted, nauseated, anti-social, and semi-brain dead and my head hurts.

I want to do some work — either respond to comments, input health expenses into a spreadsheet for taxes, or make chicken broth — but sitting on the couch, staring into space seems like my greatest capacity at the moment. Postdrome/hangover is so frustrating. I think I should feel fine because I’m not actively in a migraine, but I still feel like crap. Though technically I am still in migraine, it is just the post-raging headache phase of migraine. It is one of those times where I’m blown away by how complicated this illness is and frustrated that so few people have any idea that a migraine is not just a bad headache.

Part 2
The need to be productive overcame me, so I forced myself off the couch to start laundry and fill the dishwasher. After 30 minutes of being upright, I am shaky and dizzy in addition to my other complaints from earlier. I’m now wondering if this postdrome is turning into prodrome for another migraine or if I simply did too much too soon.

This constant wondering is frustrating, but also fascinating. I’m so interested in better understanding the process of this illness that regularly overtakes my body. Now that the migraine attacks aren’t constant, I’m experiencing what an individual migraine episode is like for most people. I’m also getting a better grasp on how incredibly debilitating my degree of chronic migraine has been.

I spoke with someone last week who has chronic migraine, too. She mentioned The Day-to-Day Life of a Chronic Migraineur, a post in which I chronicled my life over several days. Though she has five migraines a week, she also has a lot of pain-free time. We are both diagnosed with chronic migraine, which is defined as 15 or more headache days a month, at least eight of which are migraine, but the reality for each of us is vastly different.

Part 3
It is now Tuesday afternoon. I was indeed in prodrome for another migraine, then spent this morning in postdrome. Another migraine came on just after noon, but I was able to abort it with Amerge, so I’m out of the migraine-rinse-repeat cycle for now.

I feel a bit sorry for myself at the moment: I tell everyone that I’m doing so much better — and I am much improved from four weeks ago — but I also have to acknowledge that I’m still in some stage of migraine all but a handful of hours each week. I am thrilled to be doing as well as I am, just as long as I don’t pay too much attention to the fact that I still have chronic migraine that’s on the severe end of the spectrum.

*Sigh.*

The Postdrome: Migraine’s Silent Sister is an interesting article I came across while writing this post.