Havn't been on the forum for a while so its interesting to see just how many of the topics I relate to. Mostly the non motor symptoms which, maybe pretty insignificant on their own, but collectively add up to a pretty miserable time!
One of the main ones for me is RBD. I wake 3 or 4 times a night in the middle of what I can only describe as the mother of all nightmares. These nightmares are vile,violent and very, very scary. I leap out of bed and run screaming,or shouting and only wake up when I collide with the bedroom door or wall.
For someone who has difficulty walking I move awfully fast!
I can, unfortunately remember every detail of the dream and it takes an hour or so to pluck up the courage to go back to bed,hence the time of this post.
Am on 1mg clonazepam and 10mg of circadin but they don't seem to be doing the trick.
I am so tired in the day that I just cannot function.Have got an appointment with the neuro guy tomorrow, but I just needed get this off my chest,it's really affecting my quality of life.
Sorry for going on so long but anyone elses experience would help.Thanks folks
I have had them a few yrs before i was aware i was unwell, initially they were there everytime i closed my eyes i thought i must be going mad at the time these dreams replaying all the time, I also would bite my tongue in my dreams as i thrashed about throwing myself out of bed, I was dreaming i was falling down the stairs, trying to catch myself from falling.
I declined the pills as I read about the groggy effect I suffer enough from fatigue without adding a side effect of the pills or more pills, My Dentist has been very helpful by putting a bridge in which has altered my bite and a gum shield so the biting is less
Afraid i dont have a answer for the dreams themselves
Do you take dopamine agonists or levadopa?
Both are linked to Vivid dreams with DAs being more likely to cause this and the slow release versions of both being more likely to make vivid dreams worse.
The root cause is PD itself as the lack of properly controlled autonomous dopamine levels not only makes desired movement difficult, it affects the body's mobility "pause" control while asleep. You either wake up and can't stay asleep or sleep and can't stop moving.
Parkinson's really is an $#%*hole of a condition.
Yeah I take madopar, I know it can make dreams more vivid, that would be great if they were nice dreams but they are horrific. Also I 'fly' out of bed and hit the walls running! My neuro has put the clonazapam up to 2mg but admitted after I get used to that there is nowhere else to go. She said after that she would have to '' get creative '' you are right it is an @hole of a condition people (including docs) just don't get how debilitating and depressing it can be
My husband has sleep related 'seizure like" episodes. He goes rigid, and has stiff involuntary movements. Absolutely scary to watch, He is incapable of responding when having one. He does regain consciousness somewhat, but it is like coping with a drunk . He insists on getting up, but his muscles are like jelly, so I am trying to hold up 6' 5" usually in middle of night. Not good. After he has no recollection of any of it, and tends to 'lose' memory of about 12 hours. He has actually answered questions from medical staff, been to hospital and been very lucid, and has no recollections of it the next day.
Anyone else have this?
I have the most horrible night terrors imaginable, my wife and I have not slept together for 8 to 10 years as the monsters I FIGHT IN MY SLEEP well it was my beloved who took the blows, this has been worsening for the last 14 yrs and will adopt a theme which will last months then another will crop up, I cant even begin to tell you the horrible terrible ordeal I go through every night but I can tell you it has brought me to the edge of massive break down many many times, and as for drugs well ive tried everythiing no good I just have to endure ,, as I have to endure parky through the day along with te pain from the two prolapsed disccs agony day agony night its taking away the fight though through sheer spite like a wolfs bite I make my mark on the enemy oh yes im not leaving any time soon I still have a lot of figt in me, as you shall see presently
OH THERES JUST BEEN A SMALL HORSE RUN THROUGH THE WALL TO MY LEFT,
ODD EH FED4
It is so reassuring and an immense source of consolation that others suffer the way I do with the added bonus of REM Sleep Disorder on top of the PD.
At first, it was shouting out in my sleep. Usually they included the liberal use of profanity, then the blood curdling shrieks started and the lashing out wildly. On one occasion I punched my ex wife in the face, I was dreaming that a pigeon was flapping around my face and annoying me so I done what anyone would in that situation and punch the blighter!
The dreams would become increasingly vivid and I was able to recall every detail on waking. The most spectacular and humourous was me dreaming that I was a Spitfire pilot during the Battle of Britain. My flight had just taken off at sunrise from Hawkinge for a dawn patrol over the channel. I can recall vividly the excited radio chatter as we broke through cloud cover to emerge into a most glorious sunrise. Then I spotted a formation of inbound bandits - Dorniers by the look of them. "Tally ho! Bandits three o'clock low...." I shouted. We broke formation and dived down to engage. I was lining up a bomber in my sights and watched as it got bigger in my cross hairs. As I was about to squeeze the trigger, my plane shook as cannon shells thudded into my engine promptly splattering oil over the canopy which was soon following by flames in the cockpit. I screamed "I'm hit, I'm hit.... I'm burning, help me for Christ's sake..." I flapped my arms wildly trying to put out the flames and then I tried in vain to open the canopy but it was stuck.... I punched upwards frantically, screaming in terror at the thought of being burnt alive. At last the canopy slid back and I threw myself out of the plane and pulled the ripcord to release my parachute. At that point I woke up on the floor, flat on my back with one foot caught in the duvet and my ex wife peering over asking me if I was ok.
Terrifying dreams are a regular occurrence and usually lead to shrieking, lashing out or falling out of bed.
I have recently started sleepwalking despite being prescribed Clonazepam 1mg and I am seriously scared that one day I am going to injure myself or someone else.
Hi, I have REM sleep disorder.
I had it for 3 or 4 years before I mentioned it to a doctor. During the undiagnosed period I had broken toes kicking out and hitting chest of draws beside my bed given my (still) wife numerous punches and kicks or the year's including black eyes!
It was diagnosed when I visited a neurologist due to memory problems. The outcome was PD, REM behaviour disorder and LBD. I am currently talking 1mg of Clonazepam for the REM and I have to say they have helped.
Can't really say I am looking forward to what the future holds.
Yes I used to think how nice it would be to win the lotto and buy my children lovely homes make sure all the friends who have stuck by me through most horrible times, make sure they will never want, there was a lady on local tv last night and she is having to sell her home to buy cancer treatment , I would buy her treatment, and help as many genuine cases as possible, now my only wish , my only dream is the news that a cure for black heart is found soon, oh I have no doubt a cure will be found, when im 95, crippled dimentiarised and a bloke from the Euro Millions is trying to take my picture holding a cheque for £189.000.000, while im muttering (sounds like clucking bell under my breath) or ducks off, in reference to a mr fawlty in farty towels, it gets you that way does parky, if you let it, and believe me I let it , more often now than ever, but I always always have the last word, and thats ,,,,,, off parky beat you again ya boo sucks.
On reading the Parkinson's page of the Mayo Clinic web-site, it suggests that a lowering of blood sugar can lead to sleepwalking in those with PD. Since reading that (in May), my husband has a carbohydrate based snack before going to bed.So far, no more sleepwalking.Wish there was such an easy fix for the rest!
Going to ask neurologist on Monday about clonazepan for the RSBD.
We lucked out at the ER the other night, the young doctor on duty knew about Syncope! His father had PD, and he knew more about it than most. This was the first time husband had 'froze' while awake and it scared both of us -especially as we were outside on concrete patio and he was about to face-plant into it.
Freezing whilst awake is common place with OH. Also recently read an article linking REM sleep disorder with dementia; apparently the same area of the brain is affected by depletion of nerve cells in that area as in Parkinsons.
That sounds about right.
hello everyone..i can certainly understand all your saying..its 217am went to bed at ten and cant sleep although i feel absolutly burnt out ..i had 3 hrs last night and the same prior to that..mix that with restless legs and a restless mind to boot...im feelimg in a right pickle.. this, not sleeping lark does get me down , seems to have got worst since dispersable levodopa(madapar) was changed to slow release or is i my imagination..time to put on smooth radio and hope ill settle down before daybeak ...this parkinsons things a crafty bugger ,it comes at you at one angle and if he cant get you one way it comes the other..ps ..apolgies for nothing constructive just feeling the strain at the moment...onwards and upwards ,,eh ?
I feel your pain - the fatigue you get with Parkinson's is bad enough at the best of times but the added sting in the tail of not being able to sleep at night either can get you down.
If it lasts longer than a few days then it might be worth considering the following suggestions which help for me.
1) The obvious one of no or very little caffeine during the evening.
2) A "wind down" hour before bed when you are doing something fairly relaxing eg reading, listening to music, meditation, drawing/colouring etc whatever works for you.
3) Diffuse essential oils in your bedroom - lavender is very relaxing.
4) If you find yourself awake and unable to sleep, sometimes the more you try to fall asleep, the more wake and frustrated you get. So, try a bit of reverse psychology, try to stay awake, just lay in bed and put your mind in neutral and just relax, put all thoughts of not being able to sleep out of your head. Your body and mind will just drift off when it's good and ready so just go with it.
5) Try a sleep remedy eg Nytol that is quite gentle and which you can buy over the counter. Obviously check your medication or seek advice from a GP or pharmacist before taking.
6) If the sleepiness is a long term issue, speak to your GP.
Thanks for the advice shado, ive done most on your list but not had much luck ,to be honest i was given a couple of matrazipen ? ,,or something like that. they did give me a few hours sleep but didnt take any more because i rattle enough already with the pd meds i take ,i know i shouldnt take them if not prescibed them ,but i was precribed them a while back. along side to meds im taking now . ,but didnt
my hubby has Rem and Restless legs and Sleep Apnea.
For the Rem he was prescribed meds, but they made him feel very groggy/hangover in the morning. Then came a sleep test and he has mild Sleep Apnea, so now he wears a mask and that has made a big difference. Due to to gnashing of teeth during his REM, he now has been given a Mouth guard and since then no more blood on the pillow in the morning.
It is a see if it works case by case trial and error. He has Vitamin D and Magnesium supplements, for tiredness and his muscles.
Now we have to try and figure out his balance, that has totally gone to hell.
Hi there, Thank you for the advice, and sharing of experiences. The last visit with neurologist ssaw me armed with questions - he was not sure whether to hug me, or take offence. He decided that a hug was better for patient relations and answered my questions with a great deal of goodwill.
Husband was weaned off the seizure meds, because if it is REM disorder related to Parkinson's then seizure meds will not be doing any good, right? To say the experiment was a failure would be being polite!
A second neurologist, who specializes in deep brain seizures, was called in. I should say here that both neurologists are great guys, very empathetic and knowledgable. Husband has the double whammy of sleep seizures and Parkinson's. The seizures are probable due to a night time fall in 2014, which might have been because of undiagnosed Parkinson's. As some one here said, this disease is a bugger, if it can't get you one way, it gets you another.
Now hubby is on clonazepam at night for seizures, and levadopa during the day for Parkinson's. Of course we now find that the clonazepam can be addictive, and cause heavy night sweats. It also does not stay with him so that he has had a couple of seizures when he has fallen asleep in the chair, dozed off while watching tv. He obviously does not want to be so doped up he is a zomby (which has happened) but we are now in a trial and error situation. The local Parkinson's group seems to be OK with adjusting their own meds as they see fit, Not sure if I agree with that!
Anyway, an update from here. Thanks for listening
I too have RSD as well as very severe apnea so I am looking for real life experience of how it has been handled and how it progresses.
I am currently using Melatonin with dubious outcomes and hesitate to use meds that would interfere with CPAP management.
I am in Australia and as long as I am able to I will choose my own path and medications but I would appreciate any experiences that might help guide me.
Very bad night last night had bad dream woke screaming poor husband trying to wake and comfort me . Really scared him then when walking to toilet passed out banging my head on a glass door. I feel so scared what will happen if I am ever left on my own. I take Sinemet and Premipexol. Think at the moment this is the scariest symptom. My consultant did offer some medication but it made me sick (forgotten what it was called) I really dread going to bed now. Jenmek
Hello everybody,I too have the same problem with sleep but my dreams aren’t scary,there luridand not about me,but my wife,I’ve just today been put on those tablets,but a lower strength,I’ve been told by my doctor to give them a try,I was on Pipexus and Pramipexole with co,-, beneldopar,and went really where on them ,buy now I’VE,m off of the pipexus and Pramipexole,but I’m back on the Co-beneldopar,but I,'ve been told all of my dreams and sleeping problems were being caused by the Pramipexole and Pipexus now I’ve got to suck it and see how beneficial the meds are going to be now,bye till next time,WAG.