Posts Tagged ‘migraine headaches’

A bit of news

July 20, 2014

When last I shared a post with you patient people, “Kiss and Tell’s” public relations campaign was about a month from wrapping up and the news on the headache front was oh-so-very-good (although I mentioned one side effect of my prevention drug was that I DID miss that little thing we like to call eating). I realize there’s been a giant time gap, but if you’re game, come along and I’ll fill you in on what you’ve missed.

As I blogged in February, the numerous television appearances that Insider Media Management secured for Dr. Whelihan and myself to promote “Kiss and Tell” did not translate into book sales—surprisingly. Personal appearances turned out to be most successful, so that’s what we focused on toward the end of our campaign. However, I confess I was a bit distracted because somewhere around Christmas I had made the decision to move back to Austin to be with my family and friends.

It was a wrenching decision. When I moved to West Palm Beach, I figured it would be for only a few years. But I loved the ocean, loved The Palm Beach Post, loved my fabulous, smart roommate and ended up missing Texas way less than I thought I would. Huge surprise.

I stayed. And stayed. For a total of 12 years.

When I took early retirement from the newspaper in 2009, my mom wondered if I’d move back to Texas, but I told her I wanted to write my book. She understood. Three years later, when the book was finished, she asked again. I told her, “Now I need to market it.”

Which I did. For an entire year.

Enough.

Finally, this spring, I wrapped up my time in Paradise (as I like to call West Palm Beach) and took steps to bring all my belongings together in the same zip code. True, they are scattered between a storage facility on Braker Lane, my Mom’s attic AND her basement, but still, I like to think they are within shouting distance of each other.

In a show of solidarity, my wonderful pals Di and Patti (from Arizona and Ohio!) drove to Texas with me in early June, to ease the transition. We all lost a dear friend to a sudden aneurysm just days before my departure, which was wrenching beyond words, and a bit ironic as well. I had moved to Florida during a time of immense grief, mourning the unexpected death of my young niece.

To counter that memory, I very intentionally planned to say good-bye to Florida slowly, to give myself time to appreciate all the things I’d come to love about my adopted home. I had this serene, graceful exit all built up in my head—but once again, I left one state for another with a broken heart.

I limped into Austin feeling more fragile than expected. And the town isn’t quite how I left it, that’s for sure. I didn’t know where I’d fit in.

For the time being, I’m living with Mom, though I have already zeroed in on a nearby apartment complex where I’ll move this fall (halfway between my sister’s house and my mom’s condo!). Meanwhile, we are compatible roomies, while I make sure everything is as good with my 86-year-old mom as I think it is. I say we’re roomies, but between her trips out of town and the numerous dog sitting jobs I’ve already worked (and booked for the future), we’re apart more than I thought we’d be.

A quick trip to Padre Island in mid-June to celebrate Mom’s birthday was the perfect time for the moving company to call and try to deliver my furniture from Florida, so that was annoying. I had to wait an additional eight days before they sent another truck, but what are you gonna do? Finally everything arrived and has now been wedged into tiny storage units, joining the gang o’ stuff already hanging out at Braker Storage since the sale of my house last October.

Have I said how nice it’ll be to have my own place when I can unpack everything all at once? Well, it will.

Meanwhile, I started calling friends and getting back in touch with Austin peeps. It wasn’t long before I remembered why I love this place: the people. It does my heart such good to see the faces of friends after so many years apart, and still find so many shared interests, so much to laugh and talk about, such enthusiasm for time together. I feel … nourished.

And I’ve already received a couple of invitations to speak to groups about “Kiss and Tell,” so that’s exciting. Austin has a great demographic for the book and I look forward to marketing here. (I’ll blog about those appearances once they occur.)

Headache-wise, the Topamax is still effective, although I believe the stress of the move and my friend’s death increased the number of my migraines in May and June. I’m doing better now that I’ve settled in and am creating a routine at Mom’s. I can’t report only two headaches a month like I could back in January and February, but I’m hopeful I can get there again.

Part of the problem may be that, with my neurologist’s permission, I dropped from 125 mg. to 100 mg of Topamax at the beginning of May. Of course, I didn’t know then what a stressful time it would turn out to be. I asked if I could reduce the dosage because I was dropping too much weight and developing a food aversion. Eating felt like a true chore, something I almost dreaded. I knew that was dangerous.

My neurologist thought I could drop the dosage and still get a good effect with 100 mg. In addition, he felt the tension in my neck was reduced enough that I could cease getting Botox injections there (after four years). Needless to say, I was happy with that visit to his office!

Which reminds me, I need to find a really great migraine specialist here in Austin. That’s going to be hard. I’ll be comparing him to the BEST guy in West Palm. Dr. Winner was AWESOME.

Sigh. There are a lot of folks I miss back in Paradise.

I guess in some ways my heart will always be in two places. I’m going to have to get used to that.

 

 

 

 

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The best drug so far

February 28, 2014

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!

What’s up on Thanksgiving

November 28, 2013

I began my Thanksgiving with chilly morning walks for Sadie and Dexter, elegant standard poodles who require separate outings, thank you very much.

Their owners asked that I walk them one at a time, which I strongly prefer anyway. I find that two dogs, two leashes, multiple distractions and however many poop bags I end up with can lead to more confusion than I care to handle.

Also, I discovered during Sadie’s first walk that she enjoys barking and mildly lunging at any dog she encounters along the way. Since Sadie is 13 years old, and since I will be with her for just one week, I harbor no illusions about my ability to break her of this particular habit during our time together.

Fortunately it’s a very quiet neighborhood, and in three days we’ve only seen two dogs, so it’s hardly an issue. Both dogs are very sweet and docile all day long, though Sadie’s mischievous nature extends to a trick I’ve only heard about but never seen up till now—and that is grabbing the end of the toilet paper roll and pulling it out. Actually, I haven’t caught her doing it, though I think that would be funny. I’ve only seen the results, about 12 feet worth of toilet paper laid out across the bathroom floor in a perfect line. It’s pretty hilarious to find when you think you’re alone in a house.

Needless to say, I am thankful to be in the company of two entertaining, four-legged clowns this Thanksgiving. I’m preparing a dish to take to some friends’ home for a big dinner later this afternoon. Although it’s tempting, I won’t load up Sadie and Dexter to bring along, since my friends have a giant mastiff, and although all three dogs are good as gold, I don’t care to take chances that someone will get their nose out of joint.

When last I blogged, Dr. Mo and I were wrestling with the question of whether to sign a contract with a public relations firm to represent “Kiss and Tell.” After nine months, I feel like I’ve done about 75 percent of what I know how to do to market the book, so seeking help makes sense. We researched some other firms and asked dozens of people for their opinion. Honestly, there was a lot of disagreement. Plenty of people said DO NOT DO IT. And lots of people said THIS IS YOUR SHOT; DO IT.

We realized it was going to be a gamble. After much soul-searching, we threw the dice and decided to bet on “Kiss and Tell.” We signed a four-month contract last week with InsiderMedia out of Boca Raton. Already I’ve seen the difference, which is encouraging. A magazine in Fort Lauderdale needs a high-res photo of our cover for an article they want to do about us for Valentine’s Day; I wrote a 1,000-word blog yesterday for a relationship site; we did some fine-tuning on our website and Facebook page; and Dr. Mo wrote some tips on sustaining desire during the holidays for the company to use during marketing. I’m sure there’s much more to come.

The best thing for me is that the momentum of my life seems to have picked up, and that is a definite positive. When the Topamax made me so sick in August, I did pull out of it, but I don’t feel I’ve fully regained my normal energy or motivation. (Faithful blog readers will recall I started the Topamax in late summer as a migraine preventive, and immediately slid into a nasty six-week depression.)

Anyway, having the structure and contact of a relationship with a PR firm seems to be helpful for me at this stage, so that’s another thing to be thankful for on this particular day. I’m thankful as well for a few weeks at home here in sunny West Palm, although I thoroughly enjoyed a three-day trip to Charlotte, N.C. with Dr. Mo earlier this month for a book signing at Park Road Books. While there, I also watched the doctor at her professional best as she taped her live segment for “Charlotte Today,” a spot she does every month for the NBC affiliate.

Also in November I visited my former roommate, who moved to Cleveland about four years ago and took a job in a marketing department of a large law firm. A girlfriend from Austin flew in as well and we made it one of those fabulous girls’ weekends you never want to see end. Wonderful pubs and restaurants, the West End Market, Great Lakes Science Center and shopping at Crocker Park.

And, oh yes, cocktail hour with her parents.

My friend’s parents adhere to this quaint little tradition called cocktail hour. Like you see on “Mad Men.” Something I heard about but never experienced growing up in Richardson, Texas. Complete with ice bucket, olives, delectable snacks, napkins, drinks. Everything else gets put on hold. People sit down. Chat. Sip a drink. Have a little something to eat. Talk over the day’s events. Relax. Think about dinner.

It’s incredibly civilized. I could definitely fall in love with the whole ritual.

My vacation euphoria let my senses override what I know for certain: For me, alcohol equals a migraine. After my first (very moderate) cocktail hour, I woke up with a migraine, so I gave up the practice the day after I started it. I drank ginger ale on subsequent days, along with fancy snacks on cocktail napkins and a bit of sophisticated conversation. I am sad to report it wasn’t the same. I mourn my inability to imbibe, but I assume my long-range health (insert giant yawn here) will benefit. Sigh.

So that’s it. A Thanksgiving report, and a very good one overall as you can see. A bit of complaining in the headache department as I am wont to do, but I am definitely grateful for progress on the book front, good friends to be having dinner with, happy dogs here in the house with me, and loving friends and family all year long.

Plus, the chilly day in West Palm has turned bright and sunny, and it’s blown away the heavy humidity. So it is truly glorious outside. Before long it’ll be time to get Sadie and Dexter out for walks again. Happy days!

The long wait for medication to kick in

September 29, 2013

I began a new migraine preventive almost two months ago and—to put it mildly—it didn’t work at first.

(And yes, I am simultaneously working on a blog to update readers with “Kiss and Tell” news, but as it turns out, when life kicks your butt with health issues, you pretty much end up being forced to put them first. So let’s get those out of the way first and then I’ll fill in the missing pieces of the book tour summer.)

Let me hasten to add that most of the migraine preventives out there don’t work right away. They are powerful drugs that must be introduced to your system gradually and have long laundry lists of side effects. But if they work, they are worth the trouble. I began my Topamax regime at 25 mgs. nightly for a week; then 50, then 75 and finally to 100. My neurologist said if I got too sleepy or had trouble adjusting to any level for whatever reason, to stick there for a while before jumping up to the next dosage.

One month in, at the end of August, I was miserable. My migraine chart showed seven headaches for the month, and one had lasted multiple days. That is not a good month, friends. Only two other months this year have been as bad. (Yes, I keep records. Thank you oh-so-much, obsessive-compulsive tendencies.)

I knew one month wasn’t a long enough trial period for the medication, but I was in despair over my pathetic situation. In addition to all the days of painful headaches, the drug was causing some of the predicted focus problems, plus I occasionally felt very disconnected and drift-y. Since I live alone and don’t have a person that regularly fastens me back to Earth so to speak, this became an issue. My appetite decreased and I never felt like cooking because nothing ever sounded good to eat, probably due to the distinct metallic taste in my mouth. I even lost the craving for my beloved Dr Pepper; never would have believed it.

I tried to keep exercising, but it was a struggle. I started visiting a neighborhood juice bar for healthy smoothies because meals felt like too much of a chore. A friend told me she noticed the circles under my eyes looked like bruises, so I knew I needed more sleep. I felt more depressed every day, like I just couldn’t keep up with the self-care treadmill.

At the beginning of September, I told a friend I was prepared to shoulder a second month of “adjustment period blues” but fortunately she was thinking more clearly than I: She admonished me to call the doctor for advice. D’oh.

He recommended I up my dosage from 100 to 125 mgs.

Though I continued struggling for another couple of weeks, the weirdest thing happened shortly after I upped the dosage. It was so abrupt that I went back and checked my calendar. At 6 1/2 weeks after I began taking Topamax, I woke up one morning and suddenly felt clear again. The fogginess that had crept in, and the tendency of my thoughts to kind of drift off down side roads was abruptly gone. I regained my productivity and felt grounded and engaged in what was right in front of me. And having that clarity restored made me realize just how far afield I had drifted.

And here’s the miracle: With the Topamax dosage at 125 mgs., we’d found the dosage—for me—that pushed the migraines back.

For how long is anyone’s guess. I’ve been in the business of waging war on my headaches for almost two decades, and I know nothing lasts forever. But September will be over tomorrow, and this month has hosted only TWO migraines. Up till now, February was the month this year with the fewest migraines—and I had four that month—so a month with just two is pretty much heaven for me. A super month like this reminds me of how amazing a migraine-free life can be.

It was only two weeks ago that I shook off the Topamax fog, with its depressive tentacles and nasty, isolating tendencies. It’s tricky to know what part the chemicals played in final analysis, because fogginess made it all, you know, foggy (which is why I was not blogging or even Facebooking or doing much of anything, honestly). All I know is the end result is positive.

It makes sense to me that my body chemistry had to assimilate the drug over a period of time. For now, the combination is working very well. My pharmacist told me there is a good reason doctors start Topamax at small doses; many people have adjustment issues. I’m interested now to hear what my neurologist has to say when I relate my experiences during my appointment next month.

For now, I’m just grateful to be waking up day after day with no migraine aura.

For my money, that’s a miracle.

Hello migraines, my old friend

August 2, 2013

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!

A dash for the finish line

January 30, 2013

We’re probably only a few days away from announcing Kiss and Tell’s availability on Amazon, but meanwhile I’m keeping plenty busy trying to juggle all these last-minute requirements that are an integral part of self publishing.

Settling on a price for the book, which Amazon will immediately discount by about $5, was a requirement. Ditto for the e-book version. Then we have to arrange for unique url addresses that will signal Amazon when the buyers come directly from us. We earn credits with Amazon that way, sort of like being a loyal customer, I suppose. We had to get a tax ID number, set up a bank account for our already-formed writing corporation and make sure Lightning Source and CreateSpace were supplied with every piece of information they need in order to make the book available. Not to mention double-checking cover type, subheads and more on the online versions of the book.

It’s a lot.

And it’s a long way from interviewing subjects and wrestling alone over my computer on the best words to tell their stories.

But that’s OK. I’ve said good-bye to the solitary phase of my life that produced Kiss and Tell and am eager to enter the marketing phase, where I’ll get to share the book with the wider world.

An experience I had earlier this month boosted my confidence about what’s to come. A week or so after I returned from Christmas break, book designer Brion forwarded the email copy of his work on Kiss and Tell for me to proof. Rather than viewing my chapters in Word documents, this version positioned the type on book pages, complete with page numbers, chapter titles, subheads, footnotes, etc. It was the first time I had seen it altogether in that form.

Almost a month had passed since I had looked at the manuscript, so for the first time since I began writing Kiss and Tell, I was able to approach it fresh.

And I liked it! A lot!

Every other time I’ve looked at these pages, I’ve seen the problems yet to fix, the transitions that need strengthening, the weak verb I meant to replace, the doubts, the doubts, the doubts. Since I built it from scratch, I’ve grown to consider Kiss and Tell as merely a series of separate sections, each with issues and problems that I’m responsible for fixing. Often, it felt like a burden. A burden I volunteered to carry, but still . . .

Well, that viewpoint disintegrated when I proofed Brion’s work. For me, obtaining some distance from the work was a wonderful thing. Freed of the need to be a copy editor, I was somehow able to dive in and read as a consumer. And I was pulled along from page to page effortlessly. The writing felt smooth to me, and occasionally a vocabulary choice would delight me. Did I choose that? I did! Good job!

It was such fun to transform my relationship with the work from taskmaster to admirer. Always before I’ve seen what needed to be done; finally I got a glimpse of the finished product. It was a heady feeling.

Which is truly nice, because the majority of the “heady” feelings I’ve been visited by this month are of the migraine variety. I brought the flu back from Texas with me, and have wondered if perhaps it contributed to the fact that I had a total of six migraines in January. And two of them recurred, which means I woke up with migraines eight days this month. That is way too many.

However, I ended my two-year run with Lyrica early in the month (it’s a preventive) and so perhaps this is my system adjusting to its absence. Lyrica has numerous side effects and is NOT a drug one stays on indefinitely, but it did reduce the number of migraines while I took it.

I’ve decided to practice some patience and see if I drop back into a better rhythm once my body adjusts to Lyrica’s absence. With so much happening in the book front, it’s not like I don’t have distractions aplenty!

Stay tuned for a notice as soon as Kiss and Tell can be ordered online.

And thank you for sticking around this long!

Another migraine-free month

August 27, 2012

I am pleased to report that it finally happened again: I went four weeks straight without getting a single migraine headache.

Blessed are those who have no migraine experience, for they shall not understand the cause for celebration. But anyone who’s pitched a tent in migraine camp knows how divine this news is.

I’m particularly pleased—and a little surprised—because this is hurricane season, which is traditionally a tough time for those of us saddled with cluster migraines. The atmospheric fluctuations and barometric pressure changes that accompany such weather can be brutal. (In fact, the worst migraine of my life—a three-day killer—happened during Hurricane Frances. Ah, sweet memories of my roomie whisking me to the emergency room for an 8-hour wait for a pain injection.)

Thanks to my obsessive record-keeping (don’t judge!), I can tell you that it’s been almost a year and a half since I last put together four weeks with no headache. That’s a bit discouraging, true. When I hit that milestone the first time, I hoped it meant I was on the way to having frequent spells of no migraines.

That’s not how it’s worked in my case.

Instead, after that stellar month, I went back to three or four headaches a month, although I did have a couple of months last year when I had only one migraine. So far, in 2012, the fewest I’ve had is two in a month, so I’ve been feeling like a backslider and wondering if migraines are perhaps destined to eventually follow me into the nursing home.

I really despaired in May: That month I had five migraines, the most since mid-2010, when I started on Lyrica to reduce the frequency.

Let me pause briefly to reiterate that five migraines in one calendar month is no picnic. Recurrence can cause each headache to affect more than one day, and you also have to contend with the hangover feeling that the powerful migraine medications create. It’s a nasty cycle.

Which makes it beyond lovely when week after week passes and no headaches intrude on your life.

I didn’t realize quite how good a spell I was enjoying until a fellow sufferer texted me the second week in August to ask if the heavy, overcast weather was giving me migraines like it was her. I replied no, and then realized I couldn’t remember the last time I’d had a migraine!

I checked my charts as soon as I got home and saw it was July 20. I tried not to jinx myself by going into cheer mode, but I was already pretty excited because it had been 20 days. When I finally got my next migraine, on Aug. 23, I was in no mood to complain. I took my triptans and counted myself lucky because it didn’t recur the following day.

Since I count my headache totals in calendar months, my chart won’t have a big fat ZERO for August, but in my heart, I am cherishing the victory of 33 days straight with no migraine. Such a sweet stretch of pain-free living.

As for an update on the Kiss and Tell front, that will have to wait until next week when things are sorted out. A few days ago, I received an unexpected response from my editor (who impresses me more and more) and I’m sorting through some thorny structural issues with Dr. Whelihan before we proceed further.

Stay tuned.

16 shots to the head

June 30, 2011

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

March 19, 2011

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.

Less talk; same amount of dental misery

February 17, 2011

So.

I had this moment of revelation during my Christmas vacation in Texas. I was riding in the car with my sister, expounding on some minute detail of the misery I was enduring due to my braces, grateful beyond words for the chance to truly just whine to my hearts’ content, secure in the knowledge that my own flesh and blood would never get sick of my laments, would not stop loving me or even roll their eyes, because, you know — FAMILY.

But at length I glanced over and something in my extremely tactful sister’s face suddenly broke through my self-absorption. It wasn’t that she showed any disapproval or weariness or even lack of sympathy. But I somehow knew beyond a shadow of a doubt that I was taking unfair advantage of her love. Its effect on me was immediate: “Enough,” I told myself.

I am not a New Year’s resolution maker. But that very day, I vowed privately to talk less about my braces in 2011 than I did in 2010.

It has been remarkably easy to do. My secret has been to not bring it up myself; to wait for others to ask.

Guess what? Almost no one asks. Beloved friends and family apparently are able to live their lives and sleep soundly at night without daily updates of my dental travails.

Shocking as you may find this, it has its upside, which is that I am More Pleasant To Be Around. I mention this so that if you live nearby, and have been avoiding me during this unsavory episode of my life, you may now be assured the coast is clear. Feel free to call me for lunch, get togethers, etc. The danger is past.

I am able to proclaim this new and improved attitude with confidence because even time in my orthodontist’s chair today has not dampened my spirits. When I can bounce back this quickly, I know I’ve turned a corner. This morning, my former heavy-duty wires gave way to a new set of heavy duties, and I was shown how to use rubber bands for the first time. Yes. Apparently the metal bands have shifted my teeth enough that now it is time to begin moving my jaw. Which the rubber bands can purportedly do. (Don’t ask me how this happens; frankly, it seems impossible.)

So far there’s not much pain, though I was warned that headaches for a few days are common while the jaw adjusts to the new pressure. I don’t get regular headaches, I get migraines, so this isn’t good news. But I remain obstinately cheery. Perhaps because overall, my migraines are still VASTLY lower in number during the last 3 months than at any other time in the past 15 years. And I believe that part of my relief (not all) is due to the easing of pressure on my lower jaw, which the braces have facilitated.

That improvement is one big reason why it’s easier this year to refrain from mentioning my dental misery. Because truthfully, after more than 6 months in braces, I’m still aghast at how pervasive the discomfort in my mouth is, how chronic my problems with talking and eating. But when asked how I’m adjusting, “I hate them,” is enough. I leave it at that and don’t embellish.

(Nevertheless, grateful shout-out to Mom for pressing for details last week, even after I explained to her that I was trying to avoid the subject. “But I’m asking,” she said. Sweeeet! Ten minutes of guilt-free peevishness immediately followed.)

In other news, book progress has been slow this week, though I had a marvelous interview with a teen on Saturday. She was articulate, mature and loving; I was enchanted. The encounter reminded me that I’m beyond fortunate to be working on a book that engages my passion and imagination so completely.

Next time: More on the book, less on the braces. (Broke my own rule, didn’t I? Because you didn’t ask.)