Ehlers-Danlos mama trying not to twist things up *too* much!

Thursday, September 15, 2011

Nuvigil Update

When you last heard from me—if anyone is even paying attention, and this isn’t just my public journal—I was about to start Nuvigil in an attempt to vanquish the Rip Van Winkle-esque state I’ve been existing in for I-Don’t-Know-How-Long. True to form, it’s been about a month. When it comes to blogging, I’m nothing if not consistent.

Anyway, Day 1 on Nuvigil was AMAZING. I took it in the morning and was on fire. I stayed up all day, cleaned the house, was patient with the kids (remembered why I wanted 5 children to begin with), caught up on laundry, scheduled a dinner date with a friend and just felt like my old self again. I felt 22 instead of 82. I’d forgotten what it was like to be human until that day. Day 2 was equally productive.

Wow. Was this really all I’d needed for so long? A little “surfboard-shaped pill”, as Monster would say. Maybe going back to school was within reach. Maybe having another baby was doable. I guess I should note that the first 2 days weren’t without side effects. Both days, I had a dull but consistent frontal headache the entire day, very little appetite, mild to moderate nausea and significantly increased acid reflux. However, I was willing to swap the dead-tired feeling for these.

The headache was the worst on Day 3 and I ended up taking 2 doses of Relpax and some Reglan for nausea. I also didn’t feel very energized, which invoked immediate fear that the medication had failed. I found that I felt better when not upright, so it may have been that I was more POTSy/dehydrated after running around for 2 days and not eating. I tried to ride it out. I rested and waited impatiently. I sipped Gatorade and did shots of Maalox to settle my stomach.

The next few weeks were tough, physically and emotionally. I never had any more days like Days 1 and 2 on Nuvigil. I tried being neurotically consistent with my sleep schedule, my asthma medication, my long-acting opioid—hoping, hoping that one of those was the key to getting back to good. Nope. In addition, my daughter went through a tough medical procedure.

Feeling completely helpless, I stopped taking the Nuvigil entirely, started senseless fights with Cam and resigned myself to a life of exhaustion. Then, in a moment of clarity, I called my psychiatrist. My psychiatrist doesn’t do much for me these days—we check in twice a year, he writes refills for my Cymbalta, lets me vent for 30 minutes. I started seeing him because I couldn’t close my eyes after Atiyyah died without picturing the moment of his death. That was horrible. In contrast, the Nuvigil situation isn’t so bad.

So my psychiatrist saw me the next day, suggested talking to the doc who prescribes the Nuvigil about a dose adjustment and also suggested changing the timing of my Cymbalta dose from PM to AM. Maybe, he theorized, I’m getting walloped with it first thing in the morning and that’s either causing or exacerbating the hypersomnia. And since I was a bit on edge that day and having a hard time with recurring thoughts of my children dying, he added Wellbutrin XL, an antidepressant offering good coverage for anxiety. It has the adding bonus of being “activating” so maybe it would keep me awake, too.

Things have settled down. I’m awake-ish. I’m sure the Nuvigil has some benefit, as I haven’t had those scary falling asleep driving moments. I’m hoping to get more info from the MSLT on October 1st and fine tune the meds. So all in all, Nuvigil is no panacea, but it ain’t half bad.

I hope you’re all well.


Oh yeah! Before I forget…I stumbled upon (without the use of stumbleupon), a fantastic site called Band Back Together. It’s a compilation of writings and resources about everything. The underlying message is “We are none of us alone.” So not only is it a veritable information clearinghouse, it’s an incredibly positive, supportive community. There was recently a submission about Ehlers-Danlos, which is how it popped into my inbox via Google Alerts, but it’s fabulous. I encourage all of you to read, comment and WRITE. I submitted a piece recently about my daughter, so perhaps I’ll let y’all know when it’s going live. Until then, I’m With the Band. I hope you will be there too. <3