Thanks for finding me -- I'm assuming you heard the TAL piece about Matt and Trish, and went a-Googling. If you have any questions for me, please either leave a comment on this post, or you can get my email address in the sidebar (to the right of this post).
If you're concerned that you might have narcolepsy with cataplexy, I can't offer you medical advice, but I can encourage you to read up on the condition. I'd also recommend that you talk to a physician who can refer you to a neurologist and/or a sleep doctor. It's a hard diagnosis to pin down, so you'll need to be your own advocate (as with many conditions), and be aware that there are other disorders with some similar symptoms. I personally have obstructive sleep apnea (marked by excessive daytime sleepiness and, in my case, insanely loud snoring), now effectively treated with a CPAP machine.
Just to be clear: some listeners have mixed up who actually has narcolepsy with cataplexy -- it's Matt, not me. I just told his and Trish's story.
Looking forward to hearing the show! Also: be on the lookout for Noodles.
-Carl.
Hello Chris,
I am thrilled to hear about you and you story. I too have OSA and narcolepsy with cataplexy. I was baffled for several years, actually receiving the diagnosis of narcolepsy with cataplexy helped so very much. It all made perfect sense once I learned that my falling down was due to cataplexy. My eight year search led me to Narcolepsy Network. I am President of the Board of Trustees of Narcolepsy Network. We support, educate and advocate for people with narcolepsy. Presently we are looking for funding for narcolepsy research through the Pepsi Refresh Project. http://www.refresheverything.com/narcolepsyimmunochipproject
Please spread the word to everyone you know.
My story: http://virtualmentor.ama-assn.org/2004/11/mhum2-0411.html
http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html
Hi Chris,
Matt’s story is heartbreaking but perhaps not hopeless. He and you might want to take a look at Oliver Sachs’ book, Migraine, (page 195 to begin with). He classifies narcolepsy, cataleptic reactions, migraine and epilepsy as a cluster of similar brain instabilities. (I know that Matt is a neuroscientist but he may not have come across this literature. Neurofeedback is just beginning to show up in mainstream neuroscience.) These are essentially short circuits in the way the brain fires and such conditions, even those as severe as Matt’s have been addressed with EEG biofeedback with considerable success. This is feedback to the brain to teach it how to fire efficiently. It is done by playing a video game with sensors on your head that are picking up your real time EEG and feeding it into a computer. You play the game entirely with your brain. You can operantly condition the brain wave, by learning to increase the amplitude of some wave forms and decrease the amplitude of others. In the process you stabilize the brain. You can Google neurofeedback and particularly the work of Barry Sterman. He was able to take patients off a waitlist for psychosurgery at UCLA, all of whom learned to control their seizures. I can vouch for this as well. I had temporal lobe seizures in both temporal lobes, independently, and severe migraine. I have neither now.
Obviously there are no guarantees but I hope he gives this a try. It might really help him.
And Chris, thank you for a hard story compassionately told.
Sebern
Oh, so that's the cup you really wanted. ;)
Thank you so much for sharing Matt & Trish's story. So many people struggle with this strange disorder, and don't even know what's wrong. If more people knew what these strange symptoms were, so many would be diagnosed & treated sooner!
There are researchers out there that want to find a cure....but the funding is not there. Please continue to get the word out! Thanks!
~Kathleen
PWN (person with narcolepsy)
Hi Chris,
Great TAL piece. And also cool to hear a story done by a Portland interviewer (I live in Portland too). I actually have what's called sleep paralysis, a fairly common sleep disorder. Interestingly, my mother and I both developed it around the same time--when I was a freshman in college. There was a lot of stress in my life at that point in time, and that seems to be the main trigger for me. That or unusual sleep patterns such as taking a nap in the middle of the day. I haven't experienced any serious episodes for a few years now, but when they were bad, they were intense.
What happens during normal sleep is that your brain tells your body not to act out your dreams, in order to keep you from say, sleepwalking off a cliff, and your body becomes paralyzed. With sleep paralysis, your body stays paralyzed, but your mind is somehow not quite asleep (or in REM or whatever), and the paralysis often causes feelings of danger or the presence of supernatural beings or even frightening auditory hallucinations. This can be combined with such feelings like being lifted out of your body or a person touching you (usually in a menacing way). The signature symptom for me was feeling so terrified that I wanted to scream, but I couldn't, and the awareness that I couldn't move made me feel completely vulnerable and exposed.
There was one positive aspect to these episodes however. I found that if I could tell my mind when this was occurring that it was simply a temporary malfunction of the brain, I could relax into the paralysis instead of fighting it and have wild, lucid dreams.
Anyway, I realize my situation doesn't compare to Matt's and I hope that there continues to be research done to help folks like him so he doesn't have to sacrifice his happiness in order to live a life without seizures.
~Cheers