What happens when you’re diagnosed with narcolepsy, and every treatment fails?
Three years ago, I wanted nothing more than to be awake.
After a sore throat on my first day of college, I’d become increasingly incapacitated with sleepiness that nothing could relieve. I spent the majority of freshman year asleep, existing in a dream-like state where I never seemed to attain full consciousness. I hoped for a solution to my problem that worked as quickly as it had begun, but nothing prepared me for what my sleep neurologist said instead, on that fateful May afternoon: (more…)
How can you sleep when the PANDAS bear follows you to bed?
Tap, tap, tap.
It’s 2 AM, and someone is at my bedroom door. I bolt awake and hold still so they don’t know I’m in the room. I slowly reach for my phone and think about texting my parents to come help me.
But I’m all alone. No one is at the door.
I’m hallucinating again.
Wellbutrin XL: The Latest Addition to the Daily Pile of Meds & Supplements
As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.
Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…
This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.
While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.
Recently, I signed up to run in my first half-marathon. I was planning to cross the finish line this summer as the ultimate way to overcome PANDAS. I was hoping to be able to say, “Nine months ago, I couldn’t walk, but today, I’m totally healthy and symptom-free!”
But my plans have been ruined, and my dreams have been shattered.
When I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I knew it could take up to a year for me to get completely better, but I didn’t mind. As long as I was getting better, no matter how slowly, I could keep hoping.
But then I stopped getting better.
When I look back at the last few months and think about everything I’ve been through, I’m often surprised by my own resilience. What keeps me going? Why do I not give up? And I think to myself, “How in the world do I stay so positive?”
The answer? I don’t.
In our society, there’s a faulty idea that being strong and tough means holding in all emotions except the pleasant ones. We salute the people who go through terrible things and still smile and look on the bright side at the end of it all. We are forever being told that as long as we can be optimistic about life and stay positive, we’ll get through whatever comes our way. Although no one ever says so, to me it often seems like crying and grieving and expressing pain is frowned upon. Everything will be okay. Just be positive!
It’s been over four months since I had IVIG—and six months since the abrupt onset of my tics and other movement problems. On the whole, I’d say I’m much better. I’ve even started tapering off the steroids. The way I put it with my family is that I finally feel like a person again. I’m almost back to where I was before I started flaring two years ago—with the addition of tics, some walking issues, and hypersomnia. It’s not all forward progress, though. It’s really more of a two-steps-forward-one-step back process.
This time of the year is always difficult for me. Seven years ago at this time, I had the worst PANDAS flare of my life and descended into a terrifying world of OCD, odd behavior, insomnia, and depression. For a time, my symptoms completely tore apart my family.
I’ll never forget when I first made my parents cry. I was twelve years old, and we didn’t even know I had OCD, let alone PANS. Had we known, things never would have gotten so bad. My parents were almost as terrified as I was at the change they had seen in me.
It’s been more than three months since I’ve been on Prednisone. I hate the steroid, but I love it, too, because I know it’s the reason I’m able to live a somewhat normal life right now. I would never want to take Prednisone unless I absolutely had to, though, because the side effects are pretty awful: weight gain, increased appetite, insomnia, moon face, acne, decreased bone density, increased susceptibility to infections, etc… But I have to take it to keep the inflammation down and help stop the autoantibodies from attacking my brain’s basal ganglia.
Every time I’ve tried to taper off the steroid since starting it in July, the depression, anxiety, OCD, tics, movement problems, and inability to eat have come back. (more…)
Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.
So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!
I’ve ditched the cane!
In the last two years, nothing has gone as planned. I was supposed to go off to college and start my life again. I was supposed to leave behind the pain of the OCD I had seemingly conquered last year just before my freshman year. I was supposed to move away to let my career take off. But instead, I’m sitting here about to take another nap because no matter what I do, I can’t keep my eyes open. I never could’ve imagined that this is where I would be right now…
If I have to pick one thing that is the worst part about having PANDAS, I think it’s the fact that it makes me feel like I’m not myself anymore. I feel like I’m only a shadow of who I used to be—even of who I was a year ago. (more…)
So I went to see a PANDAS specialist this week, and I’ve finally been diagnosed with PANDAS. My doctor was wonderful and finally took my symptoms seriously. She even said my mysterious illness from 2006-2007 may have been Rheumatic Fever. And unfortunately, she told me I’m not just having tics, but also chorea, which could explain my strange falls when I walk. The best words my doctor said were, “You’re going to get better.”
I’m no doctor, but recent developments have shown I almost certainly have PANDAS or PANS.
A standard way to see if symptoms are autoimmune-related is to do a steroid burst for five days. The theory is that if inflammation is the culprit, the symptoms will improve with the steroids. (more…)
So I tried Xyrem for a week, and I did sleep like a baby. It was actually wonderful—I would wake up in the morning feeling completely rested and not feeling like I needed twenty more hours of sleep. I hadn’t felt that way for eight years. But it upset my stomach so badly that I lost even more weight because I was unable to eat anything. I’m down to a hundred pounds. I was around 111 before this summer…
My doctor is just plain flummoxed by my strange reactions to meds, so he made me stop everything over the weekend—even my anti-depressant. As would be expected, I felt horrible in every way. But one of the worst parts was what someone said to me about how I would be off my meds: (more…)