RBD Redux and Double Helix Water

24 03 2011

My wife just pointed out that I really should be keeping a journal of my episodes and experience with RBD. She’s right, of course, as usual.

I was diagnosed with RBD a couple of years ago after a night at the sleep clinic, and was put on Clonazapam. It seems like that is what doctors do … look up a disease or syndrome, find the latest recommended medication, and put you right on it. Since then, not one doctor has asked me about it … they just keep refilling the prescription and send me home. No tests, no research, no nothing.

The results of this treatment have been unremarkable. I still have episodes, and they became sufficiently unpredictable that I finally had to move to sleeping on a futon on the floor so that I don’t strike anybody, and don’t injure myself. I almost broke my foot one night when I slept too near the foot of the bed and gave the leg of the bed a good swift kick, so had to move myself to where there is nothing I can kick or hit accidentally … for those who don’t know, RBD, or REM Behavior Disorder, means that I act out my dreams physically, sometimes including talking and yelling in the middle of the night. I’m never aware of these episodes, but they can be disconcerting to anyone who is trying to sleep nearby.

Notable episodes are few and far between, but they do happen … and surely there is a trigger. Something I ate, something I did … maybe post traumatic stress (I was a medic in Vietnam oh so many years ago), maybe stress. Maybe, according to the literature, lesions in the brain stem. Maybe maybe maybe, yet … RBD is listed as the most uncommon of a variety of parasomnia conditions, so nobody seems to be doing a lot of research on it.

So I started doing my own.

Two weeks ago, while attending a conference at sea, I encountered Dr. Shui Yin Lo, who I’d met a couple of years earlier just before my initial diagnosis. Dr. Lo is a qigong practitioner who is doing experiments with what he calls double-helix water. In Chinese medicine, optimum health entails maintaining a dynamic balance between the yin and yang meridians in the body. Nobody has ever been able to actually identify what qi is, even though acupuncturists have demonstrated the effectiveness of stimulating or blocking qi, and they have been doing it for as much as three thousand years. Dr. Lo theorizes that qi and meridians are related to the flow of water through the body. So I’m doing my own experiments, as part of a broader study that Dr. Lo is doing on the general efficacy of double helix water. To do so, I’m also cutting down on the clonazepam, and will soon be back to ground zero, with no medications.

The night before I started drinking double helix water twice a day (morning and before bedtime), I had an episode of RBD behavior. I smashed my fist into the bulkhead beside my bed on the ship where the conference was being held. No injury, but I did wake myself up. Then I started drinking the water, and twice had infrared scans before and after drinking 6 ounces of the water.  There were marked changes in the before and after pictures, enough to convince me to continue with the experiment.

I’ve been down to half a mg of clonazepam for a week now, and last night, for the first time (according to my wife) yelled in my sleep. I do remember dreaming and half waking to realize that my arms were waving around, but it was a gentle, unremarkable dream. Soon, I’ll try sleeping without the clonazepam, and will continue drinking the double helix water and doing qigong exercises.

If I can balance my own qi and stop the RBD activities, maybe I can end the maybe maybe maybe. Maybe there are ways to heal the syndrome rather than just accepting living with it.

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Getting Burned – The Blue Light Special

22 04 2008

I’m working from home today, in part because nobody would want to see me in my current condition. My face is bright red in spotchy patches. I cannot touch my skin, it burns so badly, and I have to be heliophobic for the next 48 hours — in other words, I have to stay out of the sun. The reason — I had photodynamic therapy (PTD) on my face yesterday.

That is the cost of growing up in a sunny climate (Colorado) with a fair complexion. After awhile, you get so many actinic keratoses (not sure if that is the right plural, but they are the pre-cancerous skin cells that the dermatologist likes to freeze off when they are few and far between) that only a more generalized treatement will work. What’s it like?

First, your skin has to be thoroughly cleansed. The clinic I went to (Straub, in Honolulu) used an acetone wipe. Then your face gets wetted down with a substance known by the trade name of Levulan, or aminolevulinic acid (ALA). Precancerous cells grow more quickly than normal cells, and they are thirsty for the amino acid that gives ALA part of its name. That will shortly lead to the downfall of the AK cells, who in this case suffer from gluttony. The first part of the PTD process takes five minutes at the most, then you get sent away for an hour and a half of “marinating.” The ALA has to soak in, and meanwhile, you have to stay out of the sun. Fortunately, it was just coming up to lunch time, so between lunch and a good book (Earth: The Sequel), 1.5 hours was easy to kill.

The remaining ALA is rinsed off the face, then comes a pair of yellow swim goggles and a space helmet — a U-shaped wrap-around blue-spectrum sunlamp. I had a small fan that blew in my face, and a spray bottle full of water that I could use to keep myself cool, and the radio running in the background to keep my mind off the sharp pinpricks that started erupting all over my face. For 16 minutes and 40 seconds (exactly), I sat in this contraption listing to Don Maclean sing about American Pie. And meanwhile, my face was turning into a mince-meat pie.

When the egg timer goes off, the blue-light special is done, and so am I — well done. I leave with instructions to avoid sunlight for 48 hours, use sunscreen for four months, and itching and peeling over the next several days. The first two days of that feel like a bad sunburn … can’t touch my face, can’t pucker, can hardly open my mouth wide enough to slide a bite of food past my teeth. But I must say, it’s better than the alternative.

I’ve had all sorts of people say, “You’re a naturopath, why don’t you use a natural cure? I heard about some kind of tar you put on a precancerous spot …” and so forth. Well, maybe there is some tar that works naturally. But I would have been tarred and feathered from the top of my bald head to the bottom of my chin, and then some, in order to cover all the spots. That’s the thing about natural remedies … the best ones are those that are preventative. Once something starts up, you have to weigh the alternatives. There is a ledger that balances between effectiveness and expediency, between an ideal lifestyle and the need to carry on with daily life. In this particular case, the dermatologist’s therapy came out on the positive side of the ledger, even if my face does look like hamburger for a couple of days.