To sleep with wires or not.

October 9, 2016 2:06 AM

REM sleep behavior disorder. I've discussed it with my GP, psychologist and neurologist and we're fairly convinced I have it. Thrown myself out of bed twice in the last year, giving me a lovely new scar on my neck. Too many episodes of thrashing and kicking. Many, many episodes of talking. The last objectively confirmed by family while we were recently on holiday and thus in closer sleeping arrangements.

This all happens during vivid dreams. When I wake from an event, the dream and narrative that led to the acting out are front of mind. I'm not disoriented, nor confused. The dreams are mixed, sometimes pleasant, sometimes almost business-like, occasionally stressful. I know that I'm running or kicking or trying to say something in the dream and I'm also, at this point, also aware I'm physically, actually doing it. The first time this ever happened was way back in my early teens. I broke a toe kicking the wall while attempting to protect our dog in a fight in a very vivid dream.

I don't have a partner, so I'm not risking injuring anyone else. The frequency of the events have been increasing over the last couple of years.

I know a sleep study is the way to get a formal diagnosis. But I'm not sure what that would achieve, other than a "yup", something else to add to my list. Especially if I'm able to work with my GP on a treatment plan inline with RBD.

I already have enough documented health issues. I'm on biologics, steroids and opiates for active AS along with a couple of other meds for random stuff. It feels like I spend more time at doctors offices or hospitals than hobbies and seeing friends.

I have a general agreement with my GP and the collection of specialists that we don't do investigations or diagnostic procedures anymore unless it might change my treatment. Case in point, I recently completed an arduous cardiac work up over three days. Turns out I don't have any significant heart disease, despite weirdly changing cholesterol levels and focal chest pains. But I do have an atrial septal aneurism. Yay... Nothing to do about it, just another risk factor. Although it certainly sounds dramatic. I'd rather not get the sleep study, but I'd do it if there was anything else to learn beyond the likelihood of RBD.

I've read the other threads on Askme about RBD. I've listened to the podcast of the dude that ran out of the window at the La Quinta Inn. My GP, neurologist and psychologist, and rheumatologist, are aware of this. So far, we've agreed not to do the sleep study.

Here's the thing, I'm nervous going to bed without either adding a muscle relaxant or an extra pain tablet or a drink to reduce the chance of dreaming. I injured myself when I was off booze for ~six months. If I dream, there's a pretty good chance I'll act some part of it out.

Obviously, I'm going to talk with my GP again. I see him monthly. I've gone through this in detail with my therapist. I'm not scheduled to see my neurologist again for 9-10 months (we're monitoring peripheral neuropathies), but she'd probably be the one to take the lead on this.

I'm aware of the possible knock-ons with RBD, Parkinson's, dementia, but if my team are across it all, is there any reason to deal with another procedure?

I might be at the question now. Simply, whether it's worth it to pursue a formal diagnosis or not. Is there something more to learn in a sleep study?

TIA

posted by anonymous to Health & Fitness (5 answers total)

Dream behaviors are sometimes associated with sleep apnea. I've had patients whose dream enactment ended with sleep apnea treatment. It sounds like you're knowledgable on the subject but are you on any SSRI/SNRI? Those can cause pseudo-RBD. I'm a sleep medicine PA and this is just some of my experience with my patients. You should have a consultation with a sleep medicine physician (if you haven't already) before a sleep study so that you can get medical advice appropriate to your medical history.
posted by teamnap at 6:55 AM on October 9, 2016 [2 favorites]

Agree with teamnap, people often have more than one sleep issue going on at once and a number of them can be traced back to apnea. Adding a sedative to untreated sleep apnea is likely to worsen the problem, not improve it. I totally understand and sympathize with your desire to avoid unnecessary testing, but since it sounds like this is something you want to treat, I would advocate for getting the complete appropriate workup for the issue to make sure you're targeting the right things.
posted by The Elusive Architeuthis at 8:24 AM on October 9, 2016 [1 favorite]

I had a sleep study done after complaining to my neuro about waking up exhausted. He was looking for Restless Leg Syndrome, which he didn't find. Instead it showed severe Alpha Wave Intrusion. Knowing what was actually wrong did change how they treated me. So in my case having the sleep study was worth the hassle. I am with you on not wanting every test in the book just to confirm something.
posted by cairnoflore at 11:06 AM on October 9, 2016

Nthing the sleep study. I had similar symptoms, and my sleep doctor wanted a sleep study to rule out other issues. Turned out that apnea was causing my symptoms. If it is RBD, your doc may prescribe clonazepam to help control your symptoms. It's been successful in keeping me asleep while I'm waiting for my CPAP to be approved. But yeah, you really should have the sleep study done.
posted by bluloo at 12:14 PM on October 10, 2016

Do the sleep study. They will keep you safe; that's their job. And there's just no way to know what it will diagnose until you do it. Especially given the number of other conditions you have, you don't want to be treating a condition you might not have and ignoring something that might actually be wrong. You could end up not fixing the problem, or worse, increasing your symptoms.

I did one a few years ago. It was weird, but very informative and helpful.
posted by decathecting at 1:59 PM on October 10, 2016