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


  1. I have EDS and Narcolepsy... the combo sucks =( When i first tried nuvigil, I called it my "magical wake up pill!" and was able to function/stay awake/alert all day in school and then came home, sat down to check my email and then....ohmygosh I got back up and did the dishes! It was an amazing feeling to not feel so...chained down with fatigue and exhaustion. I described it to my best friend and she said " this pill makes you a normal 25 year old??" lol I didn't know how i felt wasn't normal..

    I took it sporadically cuz it worked so well the first while, I didn't want to waste my precious 30 free samples, as my insurance didn't cover it. When i took it a few days in a row, i did notice some weird memory issues.. like i completely forgot my ATM number, and its been the same number forever. took me 3 tries to get it right..

    I'm on Adderall XR 30mg now, and i have 10mg instant adderall to give me a boost or help me get my butt out of bed.. though if im too tired, I usually have to take 1 1/2 tabs (15mg) to wake me up cuz one just doesn't do it. Sometimes still sleep through it though but not often. (i keep it by my bed with crackers, try to wake up enough to take it, munch on stuff and then pass back out and let the drug wake me).

    I have some tachycardia issues with and without meds, and adderall gives me horrible dry mouth so i dont take it every day but the difference in my overall ability to function is pretty huge.

    I wouldnt mind trying the nuvigil again though, higher dose maybe..i dunno. it was pretty rad tho initially.

    Good luck finding something that works! Sorry this is so insanely long..haha

  2. I used to take Provigil (basically the same thing, you can read about it here: and loved it!

    I had to quit because I no longer have insurance and couldn't afford it. Now that the company has come out with the "new and improved" version under the name Nuvigil, I am hoping more affordable generic versions of the original compound will become available.

  3. @Bendy_Clutz: Had I actually been awake, I might have responded to your comment sooner! Soooo, yeah, sleep disorder is still beating me. Maybe one of the more traditional stimulants would be more helpful.

    @Jette: It infuriates me that you (and many others like you) do not have adequate, affordable access to medical care. I also hope that Provigil goes generic and that you will be able to take a medication that improved your quality of life. In the interim, are you a candidate for any of the stimulants (Ritalin, Adderall) that are available as generics and at a lower cost?

  4. Hi :) this is my first time reading your page. I, too, struggle with eds, pots and other related health issues. I use the adderall xr 40mg, but am going to mention to my doc about doing the reg at 15 and xr at 30 ... Due to similar issue. Thank you for sharing your situation ... I am unable to be online consistently but appreciate so much people like you sharing your experiences and all you've learned along the way. I do some of that when I can on my own Facebook page to share with friends and family and hope one day to know more as you all do to share with others who struggle like us, but unfortunately I am still only learning and don't feel I've enough to share with others like me. I am able to raise awareness though in my own little corner of the world and my gp has been able to help 3 new patients like us since working with me. Thank you for being willing to share and help the rest of us emotionally and medically!! Best wishes for a healthier new year!!!
    I have a Hickman catheter for iv fluids 5 times a week ... That has also truly helped me bounce back faster? Anyone tried that? That's all I have that may be helpful? Best wishes!!

  5. Hello, I am wondering how things are for you all now. Did you continue the Nuvgil? I have EDS, HPots, CFS, Fibro,...etc. My Dr gave me a rx for Nuvigil but I am leary about taking it. I have taken Adderall before and it helped my energy and blood pooling due to its constriction quality but it did make me feel quite anxious and overly chatty.. sometimes not realizing I was doing so till it was over. Embarassing for a lifetime shy person. Im considering just going back to that (only lower dose) again instead of really trying the months supply of Nuvigil. I am pretty miserable pain wise at this point since stopping 2 other meds for the pain with EDS.. Im just so confused. Every Dr says something different. Wish I could just find what works and stop being a guinea pig. Im leaving for vacation (a busy one at Disney with kids) in 3 weeks and I feel the most horrible Ive felt in years. I do not want to miss out.. and I really hope to not need a wheel chair. Hate this body. Hope you all are feeling better.