PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

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.

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Comments on: "My Narcolepsy Diagnosis Almost Killed Me" (12)

  1. This was an interesting read. I myself have POTS and Narcolepsy and was diagnosed 6 years ago. Been coping ever since. I look forward to following your blog and learning more about Panda.

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    • Hi Beckalee, Thanks for following me! I hope you find some of my posts useful. I’m sorry you have to deal with POTS and Narcolepsy. 😦

      You’ve probably had a million people asking if you’ve tried a million things to help you, but anyway… Have you ever been tested for Lyme disease with Igenex labs? Lyme can cause POTS, narcolepsy-like symptoms, and mental illness, but the standard Lyme tests miss more cases than they catch–and too many doctors seem to be ignorant about chronic Lyme. Just throwing stuff out there…

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  2. Thank you for spreading the word about your experience and misdiagnosis. It absolutely makes you think………as you say, how many people have not been properly diagnosed and are still suffering……or worse :(. Very scary.

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  3. Charlotte said:

    I am confused what narcloepsy is….

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    • Basically, narcolepsy is an autoimmune disorder that makes you extremely sleepy all the time no matter how much you sleep. There are other symptoms that I mentioned in the post, but that’s the main one. It’s not fatal, but if you don’t get treatment for it, life is pretty difficult–imagine how you’d feel after not sleeping for three days, and that’s every day with (untreated) narcolepsy.

      The sleep issues that PANS can cause looks a whole lot like narcolepsy, so that’s why I was misdiagnosed with narcolepsy three years ago. Actual narcolepsy is a completely different illness from PANS or Lyme, so I never did have narcolepsy. If I’d continued to try treating my misdiagnosis instead of PANS, there’s no telling how ill I would’ve eventually become. Does that make sense?

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  4. Melanie said:

    Wow, this is so profound & written in such an explainable & beautiful way. So glad you & your parents got to the bottom of this!
    Keep hanging in there. You’really an amazing person!

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  5. My daughter has these sleep issues with Pandas. Dr Swedo mentions them

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    • Yes, it seems like these sorts of symptoms aren’t that unusual for PANS/PANDAS. More doctors need to know about them so that we all don’t have to suffer from misdiagnosis! I hope your daughter finds relief from her sleep problems soon.

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    • Charlotte said:

      Yeah I’ve had similar sleep things with PANS

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