Insomnia and sleep deprivation

Hi, I know there are a few posts on insomnia but I’m just looking for any thoughts/observations on my own current experience if that’s OK. I’ll try not to ramble too much so please bear with me!

I’m 59, diagnosed nearly 3 years ago and am on Sinemet 25/100mg four times a day plus Rasagiline 1mg daily. I’ve suffered from insomnia on and off for as long as I can remember and have even sleepwalked on quite a few occasions in the past, but have been suffering the worst insomnia of my life over the past 6 months or so.

Some nights I’m lucky to get 4-5 hours sleep and often get as little as 2. I usually get to sleep OK, but wake up after 1-3 hours and can’t get back to sleep. I have discovered that I can usually get to sleep after taking a Sinemet for some reason but I don’t think you’re supposed to take extra ones in the middle of the night!

I mentioned the insomnia and my concerns about sleep deprivation to the Parkinson’s nurse at my last (telephone) appointment in November but she didn’t really say much. Actually, I was quite upbeat over the phone as I had been having a good couple of days, but I have been a bit worried about symptoms such as a general feeling of shakiness and lack of dexterity in my hands – this is generally before my next Sinemet is due, but I have put it down to sleep deprivation, rightly or wrongly.

The lack of dexterity is particularly concerning for me – I was made redundant in Nov 2020, but got a temporary job (WFH due to pandemic!) However, this has now finished and I will need to find something else – I have considered looking at my pension pot for an income, as I’m wondering if I can hold down a job what with the dexterity issues and feeling so tired all the time but I digress.

I’m wondering whether to call the nurse about my insomnia, or to talk to my GP, or just try a few more things (I’ve had a go at the usual sleep hygiene tips, mediation etc). You never seem to see the same person twice at my local practice, but there’s one chap I would perhaps like to talk to. Dr. S is the one who first called possible PD when I saw him nearly 3 years ago. I bumped into him at a vaccination in October and we chatted for a while. I told him about the insomnia and he said there were things they could do for me – I think he mentioned melatonin as one possibility?

I’ll obviously need to make my own decision regarding what to do next but as I said, I’d like to hear any thoughts/observations if anyone would like to chip in?

Many thanks in advance – Roy.

Hi I’ve suffered with insomnia for years. My son got me some strong cbd oil from a friend if his fir me to try. I had my best nights sleep for ages. I bought some £200 a bottle but lasts months. They suggest only using it occasionally as it’s effectiveness wears off. I take 1 or 2 drops twice a week and occasionally 4 drops. It’s 5000mg strength. I don’t want to become reliant upon it. Hence my reduced use. It provides me no other benefits. It works for me I can’t say it will work for you. Look it up on the web it’s available in the Uk. Sorry I’m not prepared to advertise the make I use as I don’t believe it’s better than others available and it’s wrong to recommend anything not scientifically proven. But it works for me

1 Like

Hi. I have taken a low dose of melatonin for at least 8 years. It has been very effective at helping me fall asleep. Although I might wake during the night, I find it easy to fall back to sleep. There is an extended release version that may be helpful for some people. I have used many sleep medications over the years, but melatonin is the only one without a drug hangover or side effects for me.

1 Like

Hi Roy

Sleep problems are unfortunately par for the course with PD. I certainly recognise the issue about staying asleep. A few thoughts (as I write at 5 in the morning having got to sleep at 2am …)

  1. It’s got a little better for me: in the early days I was very sleep deprived but 5 years later I’m only mildly sleep deprived.

  2. A bit of melatonin can help for some but I would suggest not using it long term.

  3. I take power naps during the day and find this makes a world of difference. In other words, I accept the insomnia but work round it.

  4. No harm at all in talking to the PD nurse about it. They will probably be more useful than the GP.

Good luck!
JF

1 Like

Some kind soul gave me a paul mckenna cd 'I can make you thin". I kid you not his soft voice sent me to sleep, Zzzz Zzzzzzz

1 Like

Hi Roy.
You have my sympathy. I was diagnosed 17 years ago and until 4 years ago suffered from lack of sleep. I then saw a new neurologist who takes the view that sleeping tablets can be part and parcel of your treatment and prescribed Zopiclone 7.5. I did initially have a bit of a battle with my GP who was unhappy about me taking them regularly but they made so much difference to my overall well being and with the help of my neurologist I now take one tablet every evening. I sleep soundly for about 7 hours and wake up feeling refreshed and am not sleepy during the day. I think it’s down to how the experts view sleeping tablets as a long term solution. It’s certainly worth asking.
Good luck
Jane

1 Like

It’s not for everyone but I do find listening to soothing voices helps me relax. I am trying the mindfulness website helps with anxiety stress and once relaxed , sleep is hopefully not far away. I have had Parky 14 yrs , it takes a while to find what works for you, it’s a different way of living, I may try sleeping tablets next as it’s 2:57am ,!that’s the great thing about this forum people will share ideas show their support x

1 Like

I’ve suffered from insomnia at different times during the last couple of years especially during the Summer. I was hospitalized this summer which is when my PD was diagnosed. I’m on mirtazapine and melatonin 3mg at night which help The doctor in the hospital prescribed melatonin but it’s OTC here in Canada anyway. I’ve just come off levadopa (with hospital support) to see if it improves my head posture. I don’t sleep quite as well since I’ve reduced/come off it. But I have to tough it out for at least 2 weeks they say.

1 Like

I was on mirtazapine myself a while ago and it certainly helped with the sleeping, 7-8 hours a night! However, when I was prescribed Rasagaline the neurologist said the two didn’t work well together so I had to come off it.

I’ve now had an appointment with the doctor, who has prescribed zopiclone for the insomnia - it’s only recommended for short term use apparently, but as I understand it, it can help to get the body used to sleeping through the night. That’s the theory anyway, now let’s see if it works in practice!