Great Post on Topamax Alternative

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As many of you know, I tried Topamax for a while back in 2008 with high hopes. Instead, of offering me relief, however, it turned me into a confused, emotionally unstable, skeleton. Now, there may be a new drug that offers an alternative to people for whom Topamax should work but doesn’t, and for whom the side effects make it unpleasant to take.

According to James at Headache and Migraine News, the drug study targeted people who had mild reactions to Topamax and didn’t see the improvements they and their doctors expected to see. This means that it probably wouldn’t be much help for me, seeing as my reactions to the drug were anything but mild. However, this may be of interest to some of you.

Read James’ full post here.

#Weaning and #Migraine – Treatment Update

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My little man will be 19 months old on the 12th, and with his increasing independence comes a number of changes, both for him and for me.

I’ve been practicing baby-led feeding and baby-led weaning, which means we’ve had fewer struggles than we might otherwise have had along our journey but it also means the weaning process is taking significantly longer than it otherwise might. That being said, my son took the lead on night weaning about four months ago, and I am happy to report that we are now officially done with the 2 a.m. (and 3 a.m. and 4 a.m.) feedings. In fact, we’re down to just two nursing sessions a day: one before nap and one before bed. Neither lasts longer than 15 minutes, and I’m hoping to drop both soon. While this is really good news for me (I can’t wait to have my body to myself again), it is also not so good news.

Hormones change and fluctuate a lot during pregnancy and breastfeeding. They also change when we begin to wean, and again when we finally drop that final nursing session. For some women, this isn’t a super big deal. I’m not one of those women.

As I shared on this blog, my migraines were terrible during the first half or more of my pregnancy. They eased up a little during the third trimester and were largely absent during those first few postpartum months. Then, they kicked in again, and as we’ve progressed through the postpartum period and into the toddler years, they’ve gotten worse. This is due in part to the hot and ever-changing Texas weather and in part to weaning.

Weaning related migraines are nothing new. If you search the internet, you’ll find a large number of women discussing how much worse their migraines got when they stopped breastfeeding. Somehow, though, it was something I wasn’t entirely prepared to experience.

Unfortunately my expectations had little to no effect on reality.

The last eight weeks have brought a migraine more days than not. While I have a lot of non-prescription tools for coping with migraine and a supportive family, it’s become necessary to go back on medication. Thankfully, Kellymom.com, a wonderful resource for nursing mothers and their doctors (my neurologist even references this site), offers a pretty in-depth look at almost all of the common migraine and pain medications. Taking both the website’s information into account and the age of my son (babies older than 3 months usually aren’t as affected by medication in mothers’ milk as much as younger babies), my neurologist and I have crafted a new plan. For those who wonder:

  • I’ve started amitriptyline as a preventative. As of now, I’m only on 10 mg once a day, but I’m working myself up to 30 mg. We’ll reevaluate my progress when I go back for a follow-up at the end of the month. I’m still taking 400mg of Magnesium as a preventative as well.
  • I have prescriptions for a tablet version of Prodin for use as an abortive. I also have a few samples of a Zomig nasal spray, though I haven’t used it yet. (Triptans generally don’t work for me, and I figured I would wait to try this until I’m completely done weaning, just because it makes me more comfortable. Despite the fact that I’d heard somewhere that triptans were no-nos when breastfeeding, Kellymom.com actually says Zomig is “moderately safe.”)
  • I also have Fioricet and Promethazine tablets and a nasal spray version of Toradol for use as rescues.

I haven’t used most of these medications yet, as I try to avoid medications as much as possible. I have taken two of the Fioricet tablets, but so far I’ve experienced little relief. I’m hoping the amitriptyline will bring help. If it doesn’t, I believe we’re going to try a calcium channel blocker, which is one of the only preventatives I haven’t tried yet. If that doesn’t work, we’ll wait until my son has decided to completely give up nursing and then try a few other things. I trust that eventually either time or a medication will help.

April Blog Carnivals #migraine #chronicillness

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I participated in two blog carnivals this month: the April 2014 Headache Disorders & Migraine Blog Carnival and the Patients for a Moment carnival.

In an unusual twist, this month’s Headache Disorders & Migraine Blog Carnival didn’t have a theme. Instead, participants sent in their favorite pieces written and published in the past month. Entries covered medical marijuana, Cefaly, social security disability, the definition of “healthy,” and the role of community in chronic illness. To read more, visit Somebody Heal Me.

The Patients for a Moment carnival asked participants to write a letter to their pre-diagnosis, pre-illness selves. It was a difficult challenge, which may explain the dearth of entries this month. Still, the couple of published pieces are well worth reading: http://duncancross.net/2014/04/pfam-write-myself-a-letter/.

 

An Open Letter to My Pre-Migraine Self #migraine #chronicillness

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You are about to go through hell. In more ways than one.

You are going to spend your days in bed, squeezing your eyes together in pain because even the covers hurt. You are going to be too dizzy to stand, too nauseated to eat.

You are going to take pills that prevent you from eating. You are going to take pills that cause you to eat. You are going to lose too much weight. You are going to gain weight. You are going to drink too much. You are not going to be able to drink at all.

You are going to see pink dots circle around each other on your ceiling, pulsing in time to your heartbeat. You are going to experience moments when you feel larger than the houses you are driving past.

You are going to doubt your sanity.

You are going to get shots in the nerves of your neck, and feel more agony than you could have ever imagined.

You are going to lose your confidence in yourself.

You are going to lose yourself.

You are going to get depressed and anxious. You are going to wonder if you can take it, if living like this is worth it.

Let me tell you this: It is.

Yes, you are going to suffer. Yes, you are going to run up against the edges of what you can take, emotionally, physically, mentally. But, guess what? You are going to arise stronger, more authentically you.

Don’t get me wrong; this is going to take time. But, it will happen. Trust me. So, don’t worry about the future. Instead, do me a favor:

Go dancing, all night. To loud, thumping music that makes you throw back your head in laughter and delight.

Stay up until 3 a.m. talking and making love. Do it again the next day. And, the next.

Find out when all your favorite bands will be in town, and go see them. Stand near the front, where the smokers and dancers are, with a large pint of beer in your hand and a smile on your face.

Run, as fast and as far as you want to. Take hours-long walks in the summer sun. Spend all day hiking by the creek, and swimming at Barton Springs.

Take overnight trips to exotic destinations. Carry nothing but a small purse with you.

Eat bowl after bowl of queso, and slice after slice of four-cheese pizza. Eat as much of your favorite foods as you like.

Read all night long, even if you have to get up early to work.

Do these things.

Trust me. Do these things now, while you can, so you can enjoy the memories you make when you can do them no longer.

Maintaining Perspective on Life with #Migraine

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Migraine affects us all differently. While some migraineurs experience daily migraines, others get them once or twice a month or even once or twice a year. Some of us are completely disabled by each and every one of our attacks, others are able to “power through” some of their more essential tasks. But, we are all affected by migraine, in our way.

This is something I feel we sometimes forget. It is also something I think is vitally important for us all to remember.

Migraine is, as almost all invisible illnesses are, a profoundly isolating disease. It is also very frequently associated with depression, anxiety, PTSD, and domestic violence – all of which tend to make us feel even more alienated. The immense community available to us online is one of the main things that keeps most of us above water. Yet, like all communities, it has its shares of petty jealousies, competitiveness, and judgment.

If we’re truly going to be the community I know we can be, we have to keep these facts in mind. When we lose sight of them, we fail not only each other but also ourselves.

I recently read a fellow blogger’s post about her surprise at the backlash she experienced from some readers when she admitted to finally asking her doctor to sign papers so she could obtain a handicapped license plate. As a migraineur living in a state where temperatures routinely reach over 100 degrees at least six months out of the year, I totally understand her reasoning. I too have been confined to my house for months on end because it was too hot outside and the sun was too bright for me to walk across a parking lot without getting an instant, severe migraine attack. A front row parking space would really help maintain quality of life.

I get it. But, not every reader did. Worse yet, some of those who didn’t agree decided to share their disagreement in the ugliest way possible: an attack.

And, while many of us would never respond in such a manner, we still occasionally judge and condemn one another in various ways. I’m as much to blame as anyone else.

Recently, my husband experienced his first ever full-blown migraine attack. As someone who lives with a migraine more often than not, I knew exactly what to do. I sent him to bed, brought him medication and water, drew the blinds, and left him to sleep it off in the dark. But, all the while, there was a small part of me that was whispering: “Come on. However bad it is, can’t you power through until the kids go to bed? I do.”

I didn’t really feel that way, of course. Not most of me, anyway. The vast majority of my inner self, wanted him to take the time to recover. I also knew that, during my worst attacks, I too crawl into bed as soon as I am able to do so and try not to move. But, I still thought it.

And, many of us think such things all the time.

This is normal. In some ways, it may even be healthy. But, it absolutely goes against what we’re trying to do online, which is offer each other support, unconditionally.

So, here’s my vow to you: I won’t judge you. No matter what you say on this website. No matter what decisions you make about your life, your health, and managing your disease. No matter how often or how rarely you experience an attack. Instead, I will hear you. I will support you. Unconditionally.

 

 

March #Migraine Blog Round Up

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March was a slightly busier month than February (at least here at The Migraine Chronicles), but I have to admit – more happened than I had the chance to write about. Hopefully, April will see that begin to change. In the meantime, here are some great posts you may have missed:

My Posts

Other Favorites

That’s it for this month. Happy reading!

Did I miss something you found particularly helpful? Share it here.

Talking about #Migraine: Why (and When) It’s Hard

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I’ve found it difficult to write this month. Each new idea arrives too unformed to share immediately, too vague to understand.

Some days, it is easy to write and talk about migraine. Days like the afternoon a week ago when my father-in-law asked me over a beer to discuss the Alice-in-Wonderland-syndrome hallucinations that accompany my auras. On days like that, I have no trouble recounting my experiences, no matter how incredible they might seem to someone who doesn’t have migraine disease.

Other days, though, like last Saturday when my husband wanted to chat about the potential causes of migraine, it’s not so easy. On those days, the hard days, I feel too raw to write and talk, too emotionally spent to walk someone without the illness through the experience of having it. This can hurt the people, like my husband, who just want to understand what I’m going through and help if and where they can. Intellectually, I know this, but that doesn’t make the hard days any easier.

Over the past few days, I’ve tried to figure out why some days (and months) are harder than others. Why on some days the words – either oral or written – pour forth and why on others they don’t. What I’ve learned is there isn’t one reason or even a handful of reasons. There are a multitude that may or may not apply at any given time, including:

  • whether we’re having a migraine; (I find it exceptionally difficult to form complete, well formed sentences in the midst of a migraine attack. Migraine also makes me irritable and emotionally sensitive, which can mean certain conversations are more difficult to have in the midst of an attack.)
  • whether we’re recovering from a migraine; (The migraine hangover is notorious for stealing my ability to put effort into a conversation.)
  • whether we’re feeling emotionally secure; (It’s hard to open up about things that we feel might make us look bad/lazy/stupid/”crazy” if we’re feeling insecure about ourselves.)
  • whether we’re tired; (Sleep deprivation turns even notable geniuses into blathering idiots.)
  • whether we’re stressed; (Stress does a number on our mental capabilities. It also saps our energy.)
  • whether we’re feeling understood; (If we’re feeling misunderstood, we’re already operating from a place of defensiveness and insecurity, which makes effective communication nearly impossible.)

The truth is, creativity and self-expression are, like migraine itself, often cyclical. Our ability to express ourselves is tied, like our physical health, to any number of things. The best we can do is accept this reality and ask those around us to hold off on the questions until we feel like talking.

How about you? What makes it easy or difficult for you to talk about migraine?