My name is Damien and I was diagnosed with Parkinson’s nearly 2 years ago aged 38 at the time. Everything is quite new to me and I’m still trying to find the right medication to control the tremors I get in my left arm. My real problem at the minute is trying to actually get a decent night’s sleep. For months now I’ve been finding it so hard to get to sleep and when i finally do get over, I’m only ever sleeping 2/3 hours then that’s me awake all day. As you can imagine this isn’t great and has me not in the best moods during the days. I’ve been to my GP who has tried me on sleeping tablets which were ok to get me over to sleep but they didn’t keep me asleep so I stopped taking them as I didn’t want to get addicted. I have told my neurologist but he really wasn’t much use at all tbh, he suggested breathing techniques and exercise and getting into a routine but I’ve been doing this and nothing is helping. It’s getting too the stage now where I’m so worried about nighttime and going to bed that I get so depressed and feel terrible. Can anyone please give me some suggestions that might help me.
You’ll find many threads on this forum about sleep as it’s a big problem for many Parkies. I was very sleep deprived in the early days but now, 5 years since diagnosis, it has improved quite a bit, though I still have occasional nights of 2 hours sleep. For me personally, I try to take 2 or 3 power naps during the day to compensate and I find this really helps - sometimes dozing for as little as 5 minutes is enough to recharge me quite well. In other words, I just go with the flow rather than get frustrated each night.
Like you I’ve found that the “sleep hygiene” stuff normally recommended doesn’t really work.
I give my husband just before 2 drops of cbd oil bought from Simply CBD OIL, a very reputable company. It seems expensive but lasts a long time. I use the Cannabigerol version which has a red label. It costs £30 plus postage.It has a Facebook support group.
Hi Damien, sorry to hear of the sleep problem. I don’t know what the answer is but I have the same problem. I barely ever have a full night’s sleep since I started with Madapor. 100mg/25mg four times a day. I was only diagnosed at the end of January but ny symptoms have really increased since taking Madapor medication. I will be seeing a speak a list next Monday, so I will go armed with all my questions. I am finding it really difficult trying to hold down a new full time job with no sleep. It’s hard. I empathise with you, I really do. I hope that you can get it sorted pretty soon because it gets to you eventually. Good luck my friend. Jacky x
Hi Damien, I know what you are going through and it is extremely debilitating and ends up affecting every aspect of trying to have a “normal” life and continue working. Reducing caffine ntake especially after 1pm is something worth trying also using a weighted blanket may help.
I am surprised your neurologist was not much help as sleep behaviour disorder are well documented regarding parkinsons. Sleeping tablets are not a good idea for long-term usage and as you are still experience sleep deprivation, there are other options.
Ask GP or neurologist to refer you to a sleep disorder specialist, who can carry out several tests including wearing a small device at home which helps rule out any other underlying health issues. Following this you may get called in to a specialist unit for an overnight or nights study, at which you will have several wires attached all over your skull, heart monitors, and very small tubes up your nose.
Again this is to rule out any other health conditions, but it can also diagnois REM sleep behaviour disorder. This is also well documented as an issue some people can suffer with both with or without Parkinson’s, but is a common secondary non motor symptom of Parkinson’s.
The treatment for REM sleep disorder is unfortunately more tablets, one of which promotes an increase in melatonin production, which can be a contributing factor. There are also other medications but there use is best explained by a sleep specialist.
You might have to be quite persistent with GP or neurologist to refer you, but in my experience it was and still is a life saver. It allowed me to carry on working normally for about 5 years and my quality of life was much better. Long term like Parkinson’s it will affect I individuals differently but again you are best off speaking with a sleep disorder specialist. Good luck in trying to find the right solution for you and if applicable your partner and family.
Hi Damien I have had PD for 12 years and the first time when in 2010 when I found out that I had PD i could not turn over in bed, that’s also when I found that i would only sleep a couple of hours. From then on each night is different some times I will sleep 3 or 4 or 6 hours. As I am over 60 I no longer work. Some times I am up all night but then a couple of days later I make up for it and some times sleep the clock round, I told my PD nurse and she passed on some leaflets, also in touch with Parkinson’s UK all tried to help but I seem to think that we have got to live with it, I’m sorry to sound so negative but to me it’s PD showing us what he can do. It’s hard if you go to work or/and have a young family, All I can say is sleep when you can. If I wake up and it’s 5-30 or even 6 00 I wake my husband and just say guess what I have slept till now (time) and it’s ??? marvellous.
Just one more thing some member mentioned about REM My husband has this condition he has not got PD but it took us 10 years for him to be diagnosed we changed our GP 3 times one GP even told us to sleep in separate rooms. It was only that we mentioned it to my PD nurse that we got in to see a specialist. Thankfully since being on meds he is now OK.
Don’t let this post upset you as what I’m saying is find out the best way you can to sleep do keep posting and lets us all know how you get on.
Hi Skinzo81 I am on Madopar have been on it now for a good while. Clonazpam is used to treat epilepsy and prevent seizures, I don’t want to go down this road as with PD i am taking quite a lot of meds. In sleep I think you just have to learn to cope with it and sleep when you can, but I try not to let it take over my life.
