PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘hypersomnia’

My Narcolepsy Diagnosis Almost Killed Me

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:

“You have narcolepsy.”

My whole world shattered.

Narcolepsy is a serious autoimmune disorder in which the body destroys the brain chemical hypocretin—the neuropeptide responsible for regulating wakefulness. There is no cure.

Normally, there’s a clear line between the sleep and wakefulness cycles, but in narcolepsy, it’s as if they’re blurred together.  People can experience sleep paralysis with strong emotions while awake, known as cataplexy, and carry out routine activities while asleep (automatic behaviors). They may see terrifying hallucinations while waking up or falling asleep, and they might wake up and not be able to move. Worst of all, you can’t stay awake during the day (though you might not be able to sleep at night). Untreated, it’s utterly debilitating.

I would have narcolepsy for the rest of my life, my doctor explained, but with medication, it shouldn’t stop me from living.

On the surface, I fit the bill for narcolepsy perfectly. I had daytime sleepiness so severe that I could fall asleep standing up, in the middle of a conversation, or after sitting down for five minutes, regardless of how much I slept at night. I had the cataplexy; whenever I laughed hard, my knees buckled in a paralysis attack. I had the hallucinations and the automatic behavior. And I had Periodic Limb Movement Disorder—my legs would move hundreds of times while I slept, resulting in awakening over two-hundred times during my overnight sleep study; people with narcolepsy often have PLMD.

But there was one problem with the diagnosis: my sleep studies didn’t look like narcolepsy.  In my daytime sleep study called the Multiple Sleep Latency Test, where I took five twenty-minute naps over the course of the day, I never once entered REM sleep—and entering REM in at least two naps characterizes a narcolepsy diagnosis. So I was a “narcoleptic…” Who didn’t really have narcolepsy.

My neurologist wasn’t confident in my diagnosis, so he sent me away from the appointment with medicines to treat the PLMD, just in case it was the sole cause for my extreme sleepiness. If the medicines worked, I didn’t have narcolepsy. But the medications I tried—Neurontin, Neupro, and Requip—didn’t make me any less sleepy, and instead, I deteriorated further. Requip even landed me in the ER, with violent involuntary movements, and I lost the ability to walk.

So apparently I did have narcolepsy—and now a movement disorder and increasingly severe psychiatric problems that five other neurologists couldn’t explain or relieve.

After the Requip nightmare, I started a $5000 narcolepsy medication called Xyrem, but it too failed miserably at controlling my symptoms; before long, I reached the brink of insanity as I fell into delirium, became terrified of vomiting, and stopped eating.

“We’re so sorry, but we don’t know how to help you.”

My doctors were running out of treatment options… Or so they thought.

In a last-ditch effort to save me, my parents begged for a five-day steroid burst. If it worked, then perhaps I had that “controversial” autoimmune disorder called PANDAS/PANS.

And then I woke up.

After three days of Prednisone, I was in my right mind and awake without stimulants for the first time in months. Even after the burst ended, my “narcolepsy” was still gone. The transformation was so shocking and dramatic that my formerly PANS-skeptic doctors became PANS advocates.

A couple weeks later, a specialist confirmed my PANS diagnosis, and I received IVIG to more permanently stop my symptoms. A case of mono and a Strep infection had tricked my immune system into attacking my brain, which manifested as sleep issues and psychiatric/cognitive problems.  Although the sleepiness returned to a more mild extent two months post-IVIG, it never reached the severity of before, and after a second IVIG, it disappeared for good.

Today, three years after my narcolepsy diagnosis, though I’m still fighting PANS to a far milder extent (and now Lyme), I live a fulfilling life.  So I can’t help but think, what if I’d never found out I had PANS? If PANS hadn’t killed me through starvation or suicide, then it would’ve been a living death sentence to survive with treatment-resistant “narcolepsy” and PANS’ other torturous, disabling symptoms.

10% of those diagnosed with narcolepsy have normal levels of the brain chemical hypocretin, meaning the cause of their symptoms isn’t understood. And doctors still don’t know the cause of narcolepsy’s cousin, idiopathic hypersomnia. How many other people are out there diagnosed with hypersomnia, narcolepsy, or PLMD who, like me, actually have PANDAS/PANS?

Until more patients and doctors are aware of PANS, we’ll never know. Although I’m no longer the “Dreaming” Panda in the same sense as when I came up with the blog name in 2014, now I dream of the day when no one has to endure what I did to awaken from their nightmare. I hope people will share my story, and their stories, with the world, to turn this dream into reality.

The Run of My Life

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.

I started tapering off my daily 20 mg dose of Prednisone in December, and I’ve gone downhill ever since. When I got to 3.5 mg, I was close to psychotic. I had some sense that I wasn’t right, but I wasn’t completely aware of how irrational and out-of-it I was. I stayed in bed all day long and didn’t go to class. I have since been staying at 7.5 mg, and although I’m in my right mind, I know I’m still not “right.”

Two weeks ago, I had the second-worst panic attack of my life during an exam. It had been three months since I had a panic attack at all. Even when I made up the test a week later, I was fighting off another attack the whole time, and as a result, I got a low grade.

On top of that, my OCD is suddenly out-of-control, to the point where I sometimes stay in my room instead of doing what I want because I don’t want to have to go through my decontamination rituals when I get back home. Not too long ago, I would’ve told you I hardly had any sign of OCD.

And now, I get confused at the strangest things. In church yesterday, as the offering plate was passed around (the same way it always is each week), I stared at the folded up checks in the plate and actually wondered for a moment, What am I supposed to do with this? What are those pieces of paper? Do we each take one?

My ticks and chorea are also back, and falling down is a daily occurrence.  My concentration is a joke.  No matter how much I sleep at night, I fall asleep all the time during the day without Provigil. I sometimes impulsively eat when I’m not even hungry (and I’ve still lost two pounds in the last month).

My parents told my neurologist about my ongoing symptoms, and now I’m scheduled for a second IVIG in March.

So here I am, six months post-IVIG about to go through the whole process all over again. I’m going to have to keep fighting for far longer than I expected. I may need plasmapheresis, too. I’m going to get extensive viral and infection testing to be sure there isn’t another underlying cause for my continuing flares—and if something comes back positive… Well, I don’t want to think about having to fight that off, too.

To say I’m devastated doesn’t even begin to express what I feel right now. It isn’t the fact that I’m spending two more days of my life getting treatment—it’s the fact that my “everyday” is still terrible. It’s the fact that the first IVIG wasn’t enough. It’s the fact that I’m still so sick when I hoped I would be almost completely better.

But I’m still running. I’m still training as hard as ever and not giving up on crossing that race’s finish line…

I don’t understand why I can still run when I’m otherwise dysfunctional, but running gives me the courage to keep persevering through the fight of my life when I’m sure I cannot possibly go on. Every time I finish a long run in spite of the last few miles of feeling exhausted and wondering how I would have the strength to finish, it gives me hope that I will someday also cross the finish line of PANS.

Someday, I will look back on this eight-year endurance challenge feeling on top of the world, and I will say, “That was one helluva run, but I did it!”

Am I Better Yet?

Ever since I started treatment this summer, I’ve found myself constantly asking, “Am I better yet?”

When I got IVIG, I’d hoped maybe I would start getting better within a few weeks. Whenever I had a good day, I started to think I was getting better. But then the symptoms would come back, and I’d be disappointed. I’d been told it could take me up to a year to get back to 100%, but I hoped it would be sooner. Wouldn’t you?

Six months later, I’m still playing the am-I-better-yet game, and the answer is still no. Certainly, I’m “better” than I was in a lot of ways, but I’m nowhere near where I want to be. I was doing really well, but now that I’m finding out where I am with less of the anti-inflammatory and immunosuppresent qualities of the steroids, I really don’t like what I’m seeing.

At 10 mg, I went back to not being able to walk normally. I ticked a lot. I couldn’t remember simple words and often had to pantomime things to get my point across. I kept seeing everyday things that had a “bad” texture, and looking at them made me sick to my stomach. If I took Nuvigil to keep me awake, the symptoms I was left with were close to the level of impairment I lived with for the three or four good years I had since getting sick—better than I was this summer.

At 5 mg now, things aren’t looking so good. I’m having bouts of depression where I hate doing the things I usually love. I sometimes start shivering all over when I’m not cold—a symptom I hadn’t had since September. Some days, I’ve had as many as ten or twenty falls because I can’t walk normally now. As I’m riding my kick scooter across campus, my fingers involuntarily lift off the handle bars for a couple seconds (my thumb doesn’t, so I’m not going to fall off), and it looks like I’m giving passersby some weird sort of wave—but this is just a new choreiform movement.  Having this one new choreiform movement is better than that constant full-body dance I did a few months ago.

Worst of all, my cognitive symptoms are becoming more severe and obvious. Instead of forgetting words, now I just say the wrong word and don’t even realize it until after I’ve done it—if I realize it at all. I’ve had a lot of people ask me to repeat things I say lately, which makes me think I’m messing up my words even more often than I realize. Sometimes, I say something and watch people think about what I’ve said and then ask me, “Oh, do you mean…?”

Sometimes, it can be as simple as me calling a bagel a doughnut, but other times, it’s much more disruptive. Someone asked me for directions recently, and I meant to tell them to make a left turn, but I ended up saying “right turn.” I tried to set up a time to hang out with someone else and tell them Thursday didn’t work but Friday was good, and instead I said, “We should get together on Thursday.” I don’t speak up in class anymore because I’m sure I’ll say something stupid.

My concentration is possibly at its all-time worst. I was trying to pay attention to a lecture the other day, but instead, I completely checked out without realizing it. Ten minutes later, I came out of it and had absolutely no idea what was being discussed. I tried to get back into focus, but it was impossible, so I just sat there in another world for the rest of the class. And then during my choir’s rehearsal this week, I lost my place in the music every few measures and had to rely on the girl next to me to repeatedly show me where we were. I had to call my mom and have her read aloud an assigned reading and help me parse the meaning of the text. And while writing this post, I’ve been noticing an unusual amount of typos and grammar errors.

As bad as some of my symptoms are, I’m happy to say that I barely have OCD anymore—if I have it at all. I’m also having more days when I hardly tic. I haven’t had a full-blown panic attack since October. I’m running more and more and have even joined a local running club (you don’t really have to talk when you’re running). I was so ill and exhausted from being malnourished this summer that I could barely run a 12-minute mile, but now I can run eight miles non-stop at a 9:40/mile pace.

As I continue to ask myself if I’m better and over-analyze each symptom, I’m going to try to remember how much I have improved—and I’ll keep hoping that someday, I’ll ask myself, “Am I better yet?” and the answer will be an indisputable yes.

IVIG: Four-Month Update!

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.

The movement problems have gotten slightly worse again, although they’re still nothing like the crazy chorea dance I was constantly doing this summer. The hypersomnia is by far the worst symptom now. I’m completely dysfunctional if I don’t take the wakefulness med Nuvigil. I fall asleep after sitting down anywhere for more than ten minutes. When I do happen to be “awake,” I’m loopy and can’t concentrate. At least I have Nuvigil… My doctor just started me on another anti-inflammatory called Plaquenil, so I’m hoping maybe it will help some of this.

When you’re sleep is messed up, everything is messed up.  I still have trouble with concentration and processing written information. The less steroids I take, the more I often I have trouble coming up with words for everyday objects, which only makes my social anxiety worse.  But I’m not depressed anymore. I still have quite a bit of general and social anxiety, but I was able to have a small party at my apartment at the end of the semester—even though the idea of having five friends over at once had me shaking all over earlier that day. A couple months ago, I know I wouldn’t have even considered inviting friends over.

Perhaps the most mind-blowing improvement is with my OCD. I’m slowly not carrying out compulsions anymore without having to go through months of CBT/ERP like I did in the past. There are times when I find myself touching something I wouldn’t have dared handle a couple months ago, and I only realize what I’ve done afterwards. I’m not sweating through anxiety when I don’t do my compulsions—I’m just not doing them without thinking about it. It’s amazing. As someone who has been through CBT before (and had success at the time), it’s very strange to see your brain rewiring itself without you having to consciously work so hard at it.

At my latest follow-up, my doctor told me I looked “less tormented.”  And that’s how it feels.   However, she was quite concerned about the sleep issues—especially that they had come back after being completely gone and that they didn’t go away on a Prednisone burst this time.

“At this point, we can talk about doing another IVIG,” She said. “But we need to wait at least six months to be sure you need it.”

I wasn’t surprised. But now I just have to keep waiting… again.

Nevertheless, on the whole, I’m doing so much better, and I’m very happy with the progress I’ve made. But do you want to know a secret? Getting better is frightening because the better I get, the more I realize how far gone I was this summer.  In June, I was hardly upset that I had stopped eating and couldn’t walk and suddenly had uncontrollable movements everywhere. I was apparently in a bit of a daze, and I had no idea how much I’d really lost my personality. Now that I’m back, I get it, and I’m even more grateful for my continuing recovery.

 

I’ve had this blog for over six months, and the responses and support I’ve received so far have been incredible. Thank you. I would love to get some feedback from all you amazing readers about what you want to read about next. I’m planning to continue posting regularly at least until I get 100% better and then for a few months afterwards.  That’s probably another year or two of writing.  (And then I want to turn it all into a book, but that’s another story…)

What topics would you most like to read about? Do you have any questions for me, as an eight-year survivor of OCD and PANS? Please comment with your ideas and thoughts!

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