The best drug so far

Though ironically I’ve been fighting aura from a migraine for most of the day, I’d already decided to update my blog today with all the good news in headache land.

Quick stats: 2 migraines in Jan; 2 in Feb! In 10 years, I don’t believe I’ve ever put together such a headache-light period!

I give a lot of credit to the Topamax (known by the common nickname Dopamax for its tendency to render users a bit slow to focus and make word choices) which I began taking in August. When I asked my neurologist if the Topamax could have taken this many months to kick in and be effective, he said absolutely.

If you know me, you know I don’t rely on just one protocol to treat the misery of my migraines. I’ve also tried everything from reflexology to acupuncture to diet, pills and things like eating ice cream or soaking my feet in very hot water when I feel a migraine coming on. (Don’t knock it! Sometimes these off-the-wall things do work. And believe me, people tell me new ideas all the time!)

I’ve been getting Botox shots in my neck and trigeminal nerve area every three months for four years to treat the migraines as well. Migraines usually start at the base of the skull, so keeping the neck area from going into spasm is crucial. I’ve also lately had a few neck massages by a very gifted masseuse, and I think that has helped immensely.

The side effects from the Topamax have unfortunately been quite pronounced for me. I suffered from severe depression for six weeks, which only very slowly tapered off. I was barely functional for a while, but finally my body chemistry got accustomed to the drug. It took several months, however. I’d say I’ve only just now—after six months—approached my pre-Topamax mood level.

And I definitely “lose words” or whatever you choose to call it, especially when I really want to sound smart or impress someone. I can always count on floundering at those moments.

Plus there’s the whole “loss of appetite” syndrome. Which is the most common side effect of Topamax and the one every woman I know immediately asks if they could please borrow. But I have to say I miss the enjoyment of eating. I seem to have stabilized now at a loss of 12 or so pounds, but my appetite isn’t coming back at all yet.

First off, I lost the taste for my beloved Dr Pepper. I think the caramel flavoring in it is what tasted bad. But I definitely had to give it up. The only soft drink I can handle now is Sprite or ginger ale. Mostly I drink water or tea.

Here’s what I didn’t realize about losing appetite: It’s a whole slew of things you lose interest in. In addition to not really being hungry, I find I often lack the energy to cook food. When it’s two hours past when I really “ought” to eat, I walk into my kitchen and look around and am unable to find anything at all that piques my taste buds enough to motivate me into preparation mode. If I do find something to prepare (hurrah!), once I sit down to eat, I find that after a few bites, I either feel full or I’m just sort of force feeding myself. All the pleasure has drained away and I feel no hunger or gratification in what I’m doing.

It really is the weirdest thing. And when I’m shopping for food, all of this knowledge comes back to me, and I find it difficult to spend money on groceries, because I envision all this unsatisfactory eating, and so then I end up with not enough food in the house to tempt me the next time I’m looking for food to prepare.

See? Loss of appetite is more complicated than you thought, right? Believe me, it’s way more complicated than I thought too.

Which is why I’ve been going out to eat a little more often lately. I’m trying to order off menus and tempt my picky palate that way. However, I can see I have serious work to do in the whole appetite building arena. I ordered chicken wings for lunch the other day and the smallest amount you could order was five. I had eaten a little bit of fish dip that we’d ordered as an appetizer for the table. Even so, it was sort of ridiculous when I realized I could only eat three of the chicken wings. I took the other two home to have for dinner. Sheesh.

I’m not trying to whine inappropriately about this, especially when weight loss is so difficult for many. (I’ve struggled with it myself and know how challenging it is.) I’m just trying to put in perspective the balancing act that’s necessary for those of us who struggle with migraines. There are giant compromises we make with these powerful drugs we use to prevent the migraines from taking over our lives.

It’s never an easy choice.

I knew when the depression was so bad at the beginning of my run with Topamax that, if possible, I needed to give the drug a fair shake. The other two preventives I’ve taken (Lyrica and Depacote) were each part of my life for about two years. (Interestingly, I gained weight on both of those drugs.) I am now wondering what two years on Topamax might look like. And how long this disinterest in food is going to last. Will it eventually get back to normal, like my depression slowly went away?

Fortunately, I do still love ice cream! Almost every night I have a bowl of Blue Bell vanilla bean ice cream with a banana cut up and a little bit of chocolate syrup on top. I look forward to it all day long.

Clearly, Topamax is not more powerful than Blue Bell.

Praise be!

Hello migraines, my old friend

The melody to “The Sound of Silence” keeps running through my head lately, along with these unwelcome words. Yep, it’s been a bad few months in migraine land.

The truth of my life is that no matter what else happens—from everyday activities such as grocery shopping and attending book club to the big ones, like starting a job or taking a vacation or even attending a funeral—I have to factor in migraine headaches.

When I first began getting the headaches, around age 40, I would usually become aware of them late in the afternoon, driving home from work perhaps. I couldn’t figure out why my head felt like it was splitting open behind my left eye and why the highway lights seemed so bright and annoying. When I told my sister that one night I had thrown up at the gate to my house before I made it home, she calmly informed me that if my headaches were making me vomit, they were migraines.

Point taken.

And diagnosis eventually confirmed.

That was almost two decades (and a hundred sure-fire cures) ago. These days, I tend to wake up with my migraines. They seem to gather strength overnight, and I usually know within 30 minutes of waking if I’m going to need a triptan (a $30 pill by the way) or if I can hold back the full-blown version of the headache with a couple of over-the-counter Excedrin Migraines.

Last month, for the first time, the pain of a migraine that formed overnight woke me at 4 a.m. I was in Texas for two book signings, sleeping at my Mom’s house. I actually had a dream that I had a migraine and then the dream turned real and I became aware that the pain wasn’t imaginary. I got up, fumbled in the dark trying to remember where I had packed my triptans, eventually got one down, and fell back into bed. NOT a good way to start a day, let me assure you.

But this is my life. People get used to their own private hells, I find. Everyone is bearing a cross. I’ve been emailing a friend of a friend who also struggles with migraines, comparing notes on which meds are effective preventives and which ones have side effects too dicey or too incompatible with our lives to risk. I used Lyrica for more than two years with pretty good results; in fact I occasionally went for an entire month without a migraine, but I gained weight and lost hair, so I didn’t care to stay on it indefinitely. When I slowly came off it, about four months ago, sure enough, my migraine count went back up, to 6 or 7 per month (with several of them turning into multi-day events).

My correspondent wrote that she had good luck with Propranalol for several years, so when I went for my Botox treatments this week, I asked my neurologist about it. (Yes, I get Botox shots in my neck, temples and hairline every three months to control the migraine pain. My Aetna plan covers most of the cost and thank goodness. The shots have definitely helped reduce the pain and frequency.)

Anyway, my doctor isn’t a fan of Propranalol. It’s an older drug and he says Topamax has pretty much replaced it. The downside to Topamax is that it can interfere with cognition and focus, causing patients to lose word choice and such. Apparently, its nickname is Dope-amax, which is hardly encouraging.

When I worked at the newspaper and wrote stories every day, my doctor didn’t think it was a good choice for me, and I agreed. Writing—for me—requires 100 percent focus. I have to be on my game. But I am writing much less frequently now, and the occasional speeches I give (where losing focus would be most unwelcome) are an activity I’m becoming very comfortable with. So I was willing to risk it.

Topamax it is.

The spaciness many people feel when they start taking the drug dissipates for most. One friend who began taking it about 15 months ago confirms this. I watched her closely at the time and didn’t detect any dopiness; I was doing covert research in case it was ever my turn. She’s gone from 3-4 headaches a week to 3-5 a month, which she said changed her life.

So now it’s my turn. Naturally I’m hoping for a vastly positive result, but after all the things I’ve tried, I’m being realistic. I’m also watching out for other side effects such as vision problems and dizziness. Also, some people don’t sweat normally on Topamax. Odd, yes?

Another common side effect is weight loss, though I doubt I’m lucky enough to score that one. My neurologist says soft drinks lose their appeal because of the metallic taste Topamax leaves in your mouth, and that contributes to people’s weight loss. I DO love my morning Dr Pepper; can’t imagine losing my taste for that, but we’ll see. My girlfriend who showed no signs of dopiness did actually lose some weight.

Last night I took my first 25 mg. tablet. It’s a slow build-up to either 75 mg or perhaps 100 mg. and the whole process takes at least a month. If I allow myself the luxury of the fantasy, I can recall what it’s like to have entire migraine-free months. That would be SO amazing.

Fingers and toes crossed. I’m going to think positive!

16 shots to the head

Every three months I get Botox treatments from my neurologist (a wicked smart man I greatly admire), in an effort to reduce the migraine headaches I’ve enjoyed since about age 40. The good news is that he’s down to using one vial instead of two for each session; the bad news is that means I still got 16 shots in my head today.

Actually, I’ve become fairly inured to the process, and as unpleasant as I find shots to be on any part of my anatomy, the stings and pricks of the needles on my neck and hairline don’t bother me much if I take a Xanax a bit prior to the procedure. That one little pill keeps my anxiety in check and relaxes me enough to not tense up with each warning of “a little stick.”

June brought only 3 migraines this year; a look at my records shows I had 6 in June last year, 7 in July. Many of last year’s migraines were multi-day affairs, returning for extended runs despite my desire to create “one pill only” experiences. This spring, almost all my headaches have been banned with one pill, so that’s another improvement.

Because of my progress, I start each month optimistic and happy, convinced I can get down to 1 migraine … or 2. Or none! But weaning my brain away from the ingrained patterns that lead to migraines is tricky business. Though I once experienced 4 weeks migraine-free, I haven’t been able to repeat that feat.

Maybe in July. Maybe this will be the month. Actually, it’s easy to see why June was not the month when I could post zero migraines. I was racing to finish my chapter on the 70 year olds in three weeks so I could go on vacation to Texas guilt-free. And I did, but it was a rushed process and I felt the stress. Then there were tense days in the hospital when my beloved friend Clarence Clemons suffered a stroke. And the sad trip back from Texas for his memorial service when the stroke proved fatal, despite our optimistic hopes after the first 3 days. An almost-immediate return to Texas followed, to complete a vacation somewhat altered (but still very special) to honor my mom and my niece on their shared birthday.

Since I frequently will get migraines from the altitude of airline trips or the jumbled schedules they cause, it’s no surprise that one of my June headaches was directly attributable to those factors.

But you know what? Three is NOT BAD, people! Not considering my history and not considering the stressors that cropped up in the past 30 days. So I’m declaring the month an improvement migraine-wise.

And though my habit is to start each month delighted with the clean slate and hoping to keep it that way, I’m having trouble with that tonight. That’s because tomorrow I have a dental appointment and I have this terror that they will try to install cross angle rubber bands again. The attempt was made last month, but my tongue shredded on the rubber band hooks in just hours, and the effort was abandoned. I’m praying my dentist has suffered amnesia since our last meeting, and no longer feels the need to recommend such a drastic procedure for my tortured mouth.

Please join me in this harmless prayer. My mouth thanks you.

A month without migraines

It happened.

For the first time in 15 years I went a whole month without a migraine headache. In fact, I’m approaching the six-week mark. My last headache was Feb. 7, and although I’ve had two or three days with aura, no migraine developed.

I know. Can you believe it?

I almost can’t. I go along and live my life, do the things I always did — but I don’t spend all that time sick, and fighting being sick and wondering when the sick feeling will end and then wondering when it will come back. Now that I don’t accommodate all that pain and suffering, I wonder how I was able to find space for it.

See, there’s all this time now. Every single morning is a morning when I can get up and start my day thinking about breakfast and work and exercise and errands and accomplishments. And I have slid into this world so quickly and easily that now I fear any return to the old ways, when mornings were all about whether or not it was going to be a migraine day and if so, how to adjust.

I saw my neurologist this week for my quarterly Botox migraine shots (ugh) and when I told him I’d finally assembled a successful arsenal of defense weapons against my headaches, he said he liked that image. I said I believed both the braces and cranial sacral work were contributing factors, and he agreed, calling the latter physical therapy. (His acceptance of alternative medicine is one of many reasons he remains my hero.)

The bad news is that a few weeks of success isn’t enough for him to recommend I stop taking Lyrica, the anti-convulsant I began taking in August as a migraine preventive. (You see ads for it on TV for fibromyalgia patients; it’s used much more rarely for migraine sufferers.)

I dislike taking medicines longer than I need to, and this one brought along the unwanted side effect of a solid tire that now sits around my waist, mocking my efforts to banish it. I am hopeful that once I stop these meds, I can lose the inches, but we’ll have to wait and see. My fear is that by the time I get off Lyrica, the tire will be entrenched and immovable, mine to enjoy for a lifetime.

Sigh. One thing at a time.

The braces are surely helping to reduce migraines as well, and now that I’m into my eighth month, I understand why the dental specialist said, “you underestimate the mess you’ve got going on in your mouth.”

Boy, did I. My whole structure — top and bottom teeth — was tilted inward, not outward. And reversing that is like turning a river: nothing about it is easy. The rubber bands I’ve now had for a month are pulling individual teeth up out of their sockets, creating uneven surfaces where my back molars were once smooth. I know they’ll all even back out later in the process, but meanwhile … ARGH!

To review: almost 2 years of quarterly Botox injections, 8 months of Lyrica, cranial sacral work and a massive braces project. These are the most recent (and most successful) weapons I unleashed against my migraines.

Big guns indeed, and they do bring their own messy side effects. But the results are worth it. Life without migraines is an unbelievable joy.

Next week: Book update, I promise, filled with fun stuff teenagers told me during their interviews about sexual desire.

What would normal look like?

It’s scary for me to write this blog, but I’m going to take a leap of faith and pray I don’t get punished for being optimistic — because, believe me, it’s happened before.

It would seem — after roughly 16 years of battling hormone-related migraine headaches — that I’ve finally assembled the combination of factors required to vanquish them. If you’ve ever had one migraine and felt the despair of watching your day’s agenda slip away into dull pain, you know how joyful I feel to be within reach of reclaiming my life.

In my worst periods, I have treated headaches up to 18 and 19 days each month, but things settled down some after menopause, and I was down to 5 or 6 a month, and they were treatable with a single pill.

However, this spring, those monthly headaches began recurring for 2 and 3 days, and finally my number of sick days was simply too much. You know how it is; you make up excuses about why the status quo is acceptable until suddenly it’s not OK anymore. I was tired of feeling ambushed mid-morning by the dull throbbing pain behind my left eye, and the defeat I felt every time I took my relief meds was torture.

So I told my neurologist I was ready to try another preventive drug (besides the Botox which I’ve been doing for 9 months). It’s been 4 or 5 years since I took a preventive (Depacote) and it was pretty much a flop. I gained 20 pounds, lost about a third of my hair and had the same number of migraines as always.

This time we tried Lyrica, the drug you see on TV commercials to treat fibromyalgia. I think they mention 784 possible side effects in the ad, and another 1472 are listed on the information sheet you are issued with the purchase of this drug. Depressing and intimidating, to say the least.

BUT … BUT … BUT! It is working for me! I started taking it at the end of March, which is also the time I got the braces. I figured the hammering in my mouth would bring on migraines, which helped me take the leap and start the Lyrica. But in fact, I believe the dental work is actually contributing to the decrease in headaches. I don’t clench as much and, most importantly, my front teeth have been shoved forward, so they’re no longer forcing my back teeth and jaw into my neck.

In the past dozen years, I’ve never gone a month without multiple migraines. But in October, I had only 2, neither of which recurred. This month, I’ve had just 1 headache (and I brought it on myself; ugh; say no more; say no more).

I’m even losing the feeling of aura that so often haunted my days, making me wonder if a headache was lurking. Instead, I’m clear and focused day after day. (I have lost some hair and I’m struggling to maintain my weight, but the scary side effects like seizures, heart problems and suicidal depression have stayed far away.)

The Lyrica and my braces are two pieces of the three-pronged approach that is finally working. I also began cranial sacral work in mid September. I investigated having it done at Palm Beach Gardens’ Upledger Institute years ago when I was writing a piece on migraines for the newspaper, but it became too complicated. A friend said she’d been trying to find a good practitioner for years and finally one had moved to town.

So I took the leap and made an appointment. My first experience with cranial sacral therapy was a shock: I expected someone to physically massage my head and instead experienced more of a vision quest. There’s very little touching, and the goal is balance — but it’s like you subconsciously do the work yourself.

If it sounds flaky, so be it. I’m willing to concede that my subconscious may be a lot more powerful than I gave it credit for. After just a couple of sessions, I feel calm and … well … balanced. I don’t know how that can be; I just know migraines are no longer throwing my life out of kilter day after day. They aren’t in control. It feels like sanity has been restored, like maybe I’m the captain of this ship and capable of charting a true course for wherever I want to go.

It is truly an horizon-expanding experience for me: to warily step up to the controls of my life and accept that I can be free of migraines and the toll they’ve taken. It’s a step I desperately want to take, but I’m also afraid. I’ve tried So. Many. Things. to beat back my headaches. How can I trust that this will be the one time it all comes together?

I can’t, of course. But I will anyway.

What else can I do? I’m an optimist, after all.

It’s what we do.