MemberFebruary 29, 2020 at 6:01 am
REM sleep disorder was one of my very first symptoms. I’ve never gotten out of bed but I do kick, punch, fight, yell, curse, cry, bite, scratch, etc. Like the original post said most dreams are running from something or defending yourself….I very rarely remember the dreams. Melatonin made me excessively drowsy in the morning and didn’t really work so I take 0.5mg of Clonazepam before bed and it seems to have it mostly controlled. I am 39 now, was diagnosed at 33, and was experiencing 1st symptoms at 29.
MemberMarch 2, 2020 at 12:04 am
Yes, I too have Parkysleeposis (my term for the typical broken sleep, tossing and turning, multiple restroom visits, unpredictable wakefulness, etc.) For me, a good night’s sleep: getting up to pee 2-3 times, sleeping up to 5 hours, having occasional REM sleep; average night’s sleep: getting up to pee 4-5 times, sleeping 4 hours, some fidgeting, no remembered REM sleep; rough night: getting up to pee 4-5 times and tossing and turning in between bathroom breaks, maybe 3 hours of sleep. I have some complicating factors, including arthritis in my spine, scoliosis, and spinal myoclonus. I used to get sciatica also, but seldom now, since I avoid aggravating my back usually. Anyway, the arthritis and myoclonus require me to sleep on my stomach most of the time. If I sleep on my back, the myoclonus (a sudden jerking in arm or leg) springs up. My arthritis prevents me from standing more than five minutes at a time, and causes me to get up with a backache much of the time.
My neurologist prescribed the Neupro patch to take care of the myoclonic jerking, and that usually helps unless I try to sleep on my back. When my back is particularly mean, I take two aspirin at bedtime to calm it down.
My semi-usual modus operandi for sleep aid is to take a hot bath just before bed time. It has long been said that when the body cools down after a bath, it is a signal to the brain that it’s time to sleep.
By the way, I’ve had considerable insomnia since I was maybe 8 or 10 years old. I wonder if that was a very early warning of Parkinson’s? I didn’t manifest other symptoms (loss of sense of smell, reduced manual dexerity of right hand) until I was about 50.
ModeratorMarch 2, 2020 at 8:25 am
Thanks for the tip, David!
It’s hard to say what the cause might be. He has never slept well as far as I can remember. Even as a kid, I remember him napping alot because he couldn’t sleep through the night. But he also has ulcerative colitis, so his situation is pretty complicated. I’ve also been surprised to see that he sleeps at different times, now. For the longest time, he was a night owl. And now he gets up nearly as early as my Mom. The shift seems subtle but it’s very uncharacteristic of him.
ModeratorMarch 2, 2020 at 8:30 am
Robert- Parkysleeposis gave me a good laugh. My Dad underwent DBS in the Fall, and he was really pleasantly surprised to find that one of results of the surgery is a less frequent urge to pee. I haven’t asked him if that was disturbing his sleep, but I bet he was experiencing the same kind of thing.
I’ve been curious about early PD symptoms too, because my Dad has never been able to sleep through the night. But what came first, the chicken or the egg? And are the chicken and egg related?
MemberMarch 3, 2020 at 2:09 pm
Robert, I feel for you… i used to be a pianist, now my right hand is useless. My issue is the cramping I get at night… the PAIN wakes me several times each night. Some weeks are worse than others. I thought I had “fixed it taking an extra dose of L-Dopa at bedtime, but alas…. On Sunday I was ecstatically happy, I had NO symptoms. Then, during the night, I had the illusion (?) that PD was saying to me, you think it’s gonna be so easy? take that you… (expletives deleted). I really felt this disease as an animate being, as in a horror movie. Well, maybe it is, but I’m not backing off… keep fighting!
MemberMarch 4, 2020 at 8:03 am
This is becoming a scary symptom. The other night, I struck my wife, who responded, “That hurt!” & I replied, “It was meant to!” I have no memory of that exchange.
I think I’ll try the trick of sleeping on my other side. Unfortunately, that leaves the ear that hears exposed.
MemberMarch 4, 2020 at 9:41 am
People should try sleeping separately… it may give you less stress and maybe your wife will thank you
ModeratorMarch 4, 2020 at 5:54 pm
Wow, Phil! That is scary. Has anything like that ever happened before?
MemberMarch 5, 2020 at 6:46 am
Yes, I’ve been acting out dreams, both pre- and post-diagnosis.
Seeking peace through prayer. We’re in it together for the long haul. I have the best caregiver in the world.
There’s something to be said for those awesome caregivers. I’m really glad that you have a good one 🙂
There’s something to be said for those awesome caregivers. I’m really glad that you have a good one 🙂
MemberOctober 25, 2020 at 4:38 pm
For many years I had RBD did not know it. Sister-in-law told me to see a neurologist. Summer of 2019 I saw a neurologist and had a sleep study + I failed a smell screen (not test). Afterwards I enrolled in the NAPS study, switched neurologists, and did the NAPS testing.
Failed all sniff tests, DAT scan showed slightly decreased binding of radiotracer. I am now taking Myrbetriq Tabs25 mg for overactive bladder ($500/month). No at-rest tremors, but starting last January, I have postural tremor on right side (hand/arm).
Back to RBD (I call it Really Bad Dreams). The dreams have been very terrifying. Often faceless intruders trying to get me, dog and wild animal attacks, etc. I’ve landed on the floor at least 5 times. Last time I hurt head when it hit the night stand corner. I just got a custom mouth guard to prevent me from hurting myself when I bite or clench my teeth. I’ve bitten my tongue , and cheek many times. Often painfully so and often bloody. I’ve hit and kicked my wife many times. She moved to a different bedroom.
I’ve tried temazepam and clonazepam but found them not to really work for me and there were some unpleasant side effects. For the last 6 months I’ve been taking 3 mg of regular melatonin and 15 mg of slow release melatonin. All in all it appears to work better, but just last week I had two screaming nightmares in nightly succession.
What is hard for me now is the wait for a possible/probable conversion to PD or dementia with Lewy bodies (DLB). I am 59 and still very active physically: daily stretchy, stretch cords, bicycling, and running. I have other weird things going on such as formication (very bothersome when trying to go to sleep). I wish that I could find a support group for RBD. It gets really rough for me at times.
MemberOctober 26, 2020 at 7:04 am
How do I unsubscribe from just this post?
MemberOctober 27, 2020 at 6:53 pm
I too have REM sleep disorder. I was diagnosed 15 years ago with Parkinson’s disease. Even before the diagnosis I experienced very vivid dreams that were very detailed and very colorful. Over the years since the diagnosis, they have become terrible nightmares. I am told that I scream out loudly, kick, punch, swear and cry. Some of the dreams I remember but mostly have no idea what I have said or done. I have trouble getting to sleep and have tried melatonin without success. I use a Cpap every night but the nightmares and acting out my dreams continue. I wake up feeling exhausted. It is so frustrating because sleeping should feel good and restful. If I have to say what symptom of Parkinson’s bothers me most, that would be it. I do struggle with other symptoms, but this is the worst! I feel it’s just the progression of the disease as it is now going on 16 years since diagnosis. I am fighting and will keep fighting this disease with a passion!
MemberOctober 27, 2020 at 8:15 pm
I have all of the above! Now my circadian rhythm is gone, as is my wife! [Actually i have the separate bedroom wing. Last night my wife was admiring how beautiful ‘her’ bedroom is since none of my mess is in there]
Guys get real. My beautiful wife weighs 125. I am 215 and i do not stop swinging and kicking until I hit something. I literally reach further and swing harder! That’s a wife’s nightmare! How would she ever be able to feel safety and security in her own home?
MemberOctober 28, 2020 at 8:58 am
I must admit, I have given up on this one. On a good night, I probably sleep about 5 or 6 hours. More commonly, two sets of 2 or 3 hours seems to be the pattern. Some things I have tried
– meds: I didn’t like how I felt when awake, so I discontinued.
– daily exercise: as much as possible
– diet: avoid caffine and sugar
– avoid media late in the evening: news, dramas, mysteries
– The great catch 22: avoid getting stressed about insomnia. It causes…. insomnia. So, I have set up a comfortable recliner with a soft light, maybe a battery candle, a fleece blanket, a cup of warm milk and ovaltine (I have no idea why, other than its comfort value), my dog, and a continuous feed of semi-interesting documentaries and music concerts on youtube. I often enjoy 2 or 3 hours of that, but oddly, I feel pretty good during the day — better than when I was taking meds. I often need a nap after lunch, but that only lasts about 30 minutes or so. It seems counter intuitive to just give up, but it is all about … c a l m .
MemberOctober 29, 2020 at 12:27 pm
Hi David, I know what you mean about the pain of those leg muscle cramps — it can be frighteningly intense. I found that taking 150mg of magnesium citrate at bedtime helps. I haven’t had really severe cramps since starting magnesium about 5 years ago. Very occasionally I have some persistent moderate cramping, and if this isn’t resolved by walking around for a few minutes, I have a hot bath. The hot bath was also effective for the cramps before I started taking magnesium, although it took a while to work.
MemberOctober 29, 2020 at 1:03 pm
I had 3 quite dramatic episodes of RBD about 2 decades before being diagnosed with PD. Each of them put someone at risk, although I didn’t properly appreciate the seriousness of this at the time and talked about them as amusing stories. In the first, I was acting out a dream of being trapped in my old VW van. I woke up trying to open a 2nd story window when the venetian blinds rattled…no venetians in the van 😉 The second involved trying to release some barn doors; I woke at the foot of the bed holding a TV set. My husband woke me from the third by catching my ankle before I stepped on him: I was dancing around the top of the bed mumbling, “The string….get the string!” Since then I’ve had no further episodes. As a psychologist with an interest in sleep disorders I knew that whether this was sleep walking or RBD, it’svery unusual in adults, and that episodes like mine can be prodromal to neurological disorders such as PD. I wondered off and on whether I would develop PD, and wasn’t entirely surprised when I developed a tremor 22 years after the first RBD episode.
MemberOctober 29, 2020 at 6:04 pm
Good topic that has resonated with several forum participants, including me. Thanks to all for chiming in.
I have had a few bouts of acting-out while dreaming as well after being diagnosed with PD, including one vivid dream involving vigorous leg kicking to ward off a pack of dogs that were trying to attack me. At the beginning of 2020 I relayed this episode to my neurologist who suggested increasing melatonin dosage to 10 mg at bedtime. I take a time-release formula and it has completely turned this problem around–no more acting out while sleeping and vivid dreams have decreased substantially.
If RBD is a concern I’d urge discussing it at your next neurologist appointment. I also take 75 mg of Trazodone which helps induce sleep (and has virtually no side-effects the next morning). That is until my overactive bladder lets me know it’s time to get up, which unfortunately can be several times a night despite limiting fluid intake in the evenings. I’ll be seeing a neurologic urologist next month at UC San Diego for a more comprehensive approach to this problem, as I had first been prescribed Mirabegron and then Trospium for OAB symptoms for 1-1/2 years with virtually no improvement (and Mirabegron was very pricey even with obtaining it at lower cost Canadia pharmacies). I’m hoping that an effective treatment will be in store that decreases frequency issues and thereby restores better rest, as trying to function with broken sleep is becoming a big problem.
But, I can definitely vouch for larger doses of melatonin. At least, it works for me.
MemberOctober 29, 2020 at 11:07 pm
It is so good to hear from all of you. I get strength and encouragement from reading your thoughts.
I have had crazy dreams since young adulthood, didn’t know about a link to PD until I developed more symptoms and was diagnosed 3 years ago. (I am 67). For me exercise is crucial, affecting sleep and elimination and mood. If I don’t get out there I don’t perform as well, and I also don’t have as much fun. I like to have fun!
So I go to the gym and I do Rock Steadt and I SUP paddle on the ocean and Iswim and I do whatever I can to get my heart rate up. I’m not perfect but the days where I stick to it are definitely better.
so my message is, get out and do it!
MemberOctober 30, 2020 at 2:59 am
Thus far, I have not experienced symptoms like that, however I have noted that I seem to be needing more sleep and waking up later.
I, as a result of my work, had to be up by 06:00 every morning, which I did without a problem, usually getting to bed at about 23:00.
However, I now tend to awake at about 07:30 and feel I could sleep more.
MemberNovember 3, 2020 at 8:02 pm
I don’t have trouble was acting out dreams. My trouble is not dreaming at all. I have an app that tells me how I sleep and it tells me that I have very little rem sleep. I understand that that can cause lots of trouble. I don’t know what to do about it.
MemberNovember 4, 2020 at 8:01 am
That app really does not work, not matter what they tell you. It can basically tell you when you are sleeping, or not and basic details about your movement however it really is not capable of telling you are having rem sleep or not.
MemberNovember 11, 2020 at 3:12 pm
I have had REM sleep disorder for at least 20 years prior to my diagnosis two months ago. Of course I didn’t understand what that term was or actually ment until my neurologist and wife explained it to me. Thank god I had the presence of mind to bring my spouse along to the initial neurological exam. I thought it was just nightmares.
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