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 1^st 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.

-Xan

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

Wake Up Call

Last week I had a neurology follow-up, where I again mentioned my constant exhaustion. I hadn’t been seen in clinic for a few months, but the last time I was, the nurse practitioner who serves as my primary contact there ordered a bunch of labs, all of which were fairly normal. My iron was low, as was my potassium, but not low enough to be an explanation. My overnight sleep study wasn’t particularly helpful, either, although the NP also didn’t think absence of REM was in any was normal. She talked about prescribing a stimulant medication, but it seems the doctor she works with is quite stingy when it comes to scheduled medications, which both Provigil and Nuvigil are, and she confessed to having very little experience treating Narcolepsy and related sleep disorders. I believe her exact words were, “Believe me, you don’t want me prescribing your Nuvigil.” Hey, at least she’s honest. I wasn’t all that concerned, since I also see a pulmonologist who specializes in sleep disorders and seemed willing to try medication once I did the next sleep study.

Yeah, that.

I’m limited in where I can go for the study by my health insurance plan’s large deductible and by the privileges of my pulmonologist, whom I’d like to read the study, not just the report. Setting up the study took some work, as I was first booked (again) for a regular overnight study, which wouldn’t have provided the additional information needed to confirm or rule out narcolepsy. When they eventually called me back, they told me to come in on October 1^st.

Two months?

I have come to expect to wait two months to see my daughter’s motility specialist, one of two in the entire country. But I’ve rarely had to wait two weeks, much less two months for any type of study at this hospital, which touts itself as being ranked #1 in the state in Patient Satisfaction for {Some Number of Years} Running!

And yeah, maybe you’ll blame it on my American-overprivileged-entitled mindset that I didn’t just write the date on the calendar and wait and deal--but I didn’t. One thing I have learned during my adventures in medicine is that not everything is as it seems, including wait times for appointments. (Check out this article if you don’t believe me.) So the first avenue I pursued was that of trying to procure an earlier appointment. No dice, at least not yet. I’ve gone around in circles with the scheduling center and played phone tag with the sleep lab, but unless I want to pay a hefty fee by going to another sleep lab, as I have yet to meet my portion of our insurance plan’s 2 person deductible, the October 1^st appointment stands.

For a few days, I was almost ok with that. After all, I’ve been dealing with being tired for quite some time now. I enjoy coffee…and naps…and it’s getting close to Snuggie season.

This morning I reached my breaking point.

Monster had his outpatient Occupational Therapy appointment in the city, a 30 mile drive from our home. Cam had to work, so after getting Miss Puggle on the bus, I packed the three boys in the car. It was just before 9 am; I’d been up for maybe 2 hours.

By the time I reached the light at the top of the main road, a 3-minute drive, I was excessively tired. I knew that the drive was going to be painful.

I sucked down an iced coffee and a shot of espresso, praying the caffeine would counteract the overwhelming fatigue without wreaking havoc on my stomach and forced myself to stay awake and alert by rocking, shaking, adjusting the air & music and talking to the kids. When we arrived safely at Monster’s appointment, I called my pulmonologist’s office crying and asked if there was anything at all they could do to help me. Waiting until October for the MSLT, then for the results, then for treatment to start would mean giving up driving—at least for the most part. There’s no way I could continue to rely on caffeine and sheer willpower.

At first, the medical assistant told me I would have to wait to have the MSLT, but I kindly (but firmly) asked her to at least relay the message to the doctor that my sleepiness was negatively impacting my quality of life and the safety of myself and that of my children. She begrudgingly took my name and number. (Really? It’s just a message!)

Amazingly, I got a call this afternoon that my pulmonologist was calling in Nuvigil for me to try starting tomorrow morning. Finally. Something.

I’m trying not to get my hopes up too much, as I’ve had a lot of awful medication reactions, but I feel like a weight has been lifted. I have hope that life can feel normal again. Even if my life is stressful, painful and complicated, I’d like to be awake to experience it. I’m so tired of being tired.

We’ll see how it goes.

Chief Complaint: Exhaustion...Any Ideas???

When I was younger and yet to be diagnosed, I had my fair share awful encounters with the medical world. Doctors thought I was faking injuries and ailments, self-inflicting them, that my parents or someone around me was hurting me, that I needed to be institutionalized...the list goes on and on.

Thankfully, that's not usually the case anymore. I occasionally encounter doctors and other professionals that don't understand EDS and make insensitive comments or propose treatments that are inappropriate, but as an adult who is able to choose her own providers, I'm quite happy with my team. There is one area of exception, though.

For the past year or so, I've been exhausted. I'm not sure when my energy was zapped, but I am perpetually operating in a state of "tired"--from the moment I wake up until I go to sleep. I remember a time when I wasn't so tired; I just don't remember when it was. This was of concern to my various doctors until all the tests came back "normal." Then quite a few of them settled in to that oh-so-comfortable default position of "blame the patient." Sort of.

My neurologist said it was because I was in pain and depressed and not eating well. My rheumatologist said I didn't seem depressed but also blamed the pain. My psychiatrist agreed that I wasn't depressed and didn't know what to say about the pain. Maybe acupuncture.

Ok. I understand that chronic pain can cause depression, which can fatigue. I'm really not depressed, though. And on top of the constant fatigue, I also have crushing "attacks" where I suddenly feel completely exhausted and out-of-it, as though I've been awake for days. When these come on, [which is more likely mid-morning, late-afternoon or after being in the sun] I can barely keep my eyes open. (I think this is due to a weird ocular sensation, but it's hard to explain.) When Cam witnesses these, she can see a physical change, although she's not certain the change would be obvious to people who don't know me, besides my seeming tired.

My internist was concerned about narcolepsy, so I had a sleep study. Of course, I couldn't sleep that night--go figure. What the study did show was a complete absence of REM sleep and mildly reduced sleep efficiency. The physician reviewer attributed the lack of REM to my Fentanyl & Dilaudid and still considered the study fairly normal. I do need to have another one, including the MSLT now that I'm out of my cast.

Has anyone experienced this? What do you think? I'd love some opinions, answers and treatment suggestions...this exhaustion is what cripples me more than the pain, fusions, GERD and all other symptoms combined, if that says anything.

Thanks in advance.

*Xan

Staying Well When Life Goes Wrong

People who know me in real life would probably laugh at the thought of me writing a feel-good blog post. I'm not a negative person, per se. I'm just, well...intense. Passionate.  A hell raiser. I'd like to think of myself as injustice intolerant.

Recently, it seems many people I know just haven't had a break--whether their troubles are their own health, that of a loved one, financial difficulties, grief and loss issues or some combination. Beyond that, there have been a number of devastating events reported on the local, national and international level. Here in New England, it's bitterly cold, which only seems to magnify the pain.

But while I could probably give a million reasons NOT to be happy, I'd actually like to change focus--not to the million reasons to be happy, but to the importance of taking care of yourself when nothing seems to go right.

I know, I know--you've heard it before. It sounds hokey. And the fact of the matter is, I'm no expert on the subject of self-care, self-soothing, etc. You could Google either of those terms and probably get lots more ideas than I will provide. But here's a reminder to do it! Do something nice for YOU. Do something that makes you feel better and be ok with that.

Want ideas from a twisted sister? Fine. These things help me:

·         curling up on the couch with my Snuggie and watching something completely mindless

·         taking a bath

·         playing around with photos on Picnik

·         drinking coffee, sometimes even flavored

·         looking through/organizing old photos

·         sleeping

·         reading the Onion, finding articles with stumbleupon

·         finding new blogs, feeds to read

·         buying new socks--especially patterned!

Again, find something for YOU. Find something that makes you feel better and schedule it into your day. Make yourself a priority, even if only for 15 minutes. And if you're able to get physical activity, I'd highly recommend it. I was a competitive swimmer for many years and being in the pool improved my mood like nothing else. And even after that, before my body really couldn’t hack it, I felt better after getting out of the house and running. Or walking. Or hobbling.

Also, for those of you with chronic pain or fatigue, I cannot express how important it is to maintain human contact. As hard as it can be, especially on a bad day, to pick up the phone and call a friend or a relative, it can make such a difference. I love spending time with my best friend because it helps me forget about everything else in life for a while and just feel normal. Even if you don't feel like calling anyone you know, make a point to go out in the world. Smile at a stranger. We're all in this mess together.

When people don't seem to understand us or our children or our situation, it hurts. Sometimes it's easier to avoid talking about the difficult topics than it is to confront the people in our lives who mean well but just don't get it. (This sort of gets into that whole, "But you don't look sick..." issue, which I’m also not the authority on.) It takes time. I was diagnosed with EDS 11 years ago and it's still a work in progress. I'd like to believe that people have the best intentions. I know that my own independence (and stubborness, and shame...) is often what forces people to keep their distance. I also know that when people are so upset by a situation (e.g. the death of a child or the illness of a once-strong adult), they react in ways that seem counterintuitive: by shying away rather than embracing, by remaining silent instead of comforting. Humans are odd, imperfect creatures.

So again...if you're struggling right now for any reason, please know that you're not alone. Take care of yourself, allow yourself to be cared for and if the burden is too much ASK FOR HELP. It's ok. It doesn’t make you weak to need someone. It makes you human.

I don’t know why I felt so compelled to write this instead of sleeping, but I really hope that someone reads it at the right time.

Hang in there and keep raising hell!! You’re all in my thoughts.

Cyber-hugs from the non-hugger,

Xan

After re-reading, I thought I should also note:

If you [or someone you know] are really at your end and feeling as though you may hurt yourself or someone else, get help NOW. A mental health emergency should be treated like any medical emergency. Call 911, emergency services or get to an ER or mental health emergency service location. Need to talk to someone first? In the US, the National Suicide Prevention Lifeline is 1-800-273-TALK (8255). I'd like to think that life's worth living, despite all the hard stuff, but sometimes it takes a little help to get there.