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!

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2 Responses to “The best drug so far”

  1. Bonnie Bergstein Says:

    Very interesting about your experiences with Topamax for migraines. I get severe migraines due to a neck injury which required a 5 level cervical fusion. I cannot do Botox because of problems with swallowing (the Botox could make it impossible for me to swallow). I did try Topamax, but developed kidney stones from the Topamax (and it didn’t help prevent a migraine, and I felt like my head was in cobwebs).
    I have the same issues with lack of appetite, not being able to eat, not wanting to eat, but my problems are from the migraines, nausea and vomiting!! I have also tried just about everything that people suggested (including the ice-cream and feet in hot water). For me, I need to take the triptans – Zomig nasal spay, Axert and Relpax (can’t take Imitrex). The battle goes on (I spend at least 2 weeks every month debilitated by migraines). I know want to find out about the new FDA approved device that is supposed to help prevent migraines. Will check with my neurologist!!
    Best of luck to you – I know many people with different chronic pain issues who have been helped with Topamax.

    • annerodgers Says:

      Hey Bonnie,
      Thanks so much for your comments. Did you get that FDA approved device that sort of looks like a pair of sleek sunglasses? That’s what you were referrring to, right? I thought it looked interesting. I haven’t talked to anyone who’s tried it yet.
      I was able to decrease my Topamax from 125 mg to 100 and it’s made it possible for me to eat a little more food. But I’ve jumped back up to 4 migraines a month from 2. But I have had an extremely tumultuous two months, so I’m hoping when things settle down (I’ve moved back to Texas) I may get back to two migraines a month. I remember when I was sick for two weeks a month, and my heart really goes out to you. Keep searching for your cure. I believe it’s out there for you!
      Best,
      Anne

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