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!

The long wait for medication to kick in

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.