Just wondering how many of us suffer with insomnia. I’m 50, been diagnosed 4 years, I’ve suffered from insomnia since I was a child. It’s got worse of the last few years, seems no matter how tired I am, I just don’t sleep.
I’m reluctant to start on the Parkinsons meds, as i’ve got many years ahead of me to be on them. I was prescribed Sinimet, does the medication help with insomnia?
Insomnia is not uncommon, especially for those with Parkinson’s. Not only can Parkinson’s symptoms contribute to sleeping trouble, but there are also Parkinson’s medications that can make you more alert, resulting in a greater inability to fall asleep (or stay asleep) at night. I know that many of our community members are in a similar position as you, so I do hope some of them stop by to say Hello and share their experiences with you.
We have a webpage dedicated to sleep issues which you can check out, as well as one on the different Parkinson’s medications, including Sinemet. You may find some helpful tidbits there (although it cannot compare to first hand experience!).
If you’re having concerns about taking Parkinson’s medication, or are worried about how they will impact your sleep, I would highly recommend reaching out to your GP, Parkinson’s nurse, or specialist. Sinemet has been known to cause sleep problems, so this would be something for you to discuss with them. They will not only be able to offer suggestions on how you can get more and better sleep, but can also sit down with you and come up with a drug regimen that fits your needs (if one is needed at all).
You’re also welcome to reach out to one of our advisers on the helpline as well - on 0808 800 0303. They too will be able to offer tips on sleep, and you can discuss any concerns you have about drugs with them as well.
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I was diagnosed at 48 and I’m now 57. I chose to take medication from diagnosis because I was finding my tremor and foot dystonia completely unmanageable; I continue to take the lowest dosage of medication that allows me to do the things that are most important to me but like you, I am constantly aware of the number of years that I’m going to have to take medication for and it worries me.
Medication does not give me back full functionality, so to speak, but I am lucky because I am still very active. I truly believe that we all have a unique as well as a shared experience of Parkinson’s; the range and severity of symptoms that we experience seems to vary greatly as does the rate of progression of our Parkinson’s and our response to medication. In addition, we all have our own unique lifestyles, beliefs and priorities.
That’s a very long way of stating the obvious and saying that I think it’s all a balancing act and a trade off. Personally, I believe that medication allows me to stay active enough to be able to exercise regularly which definitely has a positive impact on my Parkinson’s. The downside is that I don’t sleep well at all and I suspect this is at least partially related to my medication regime. I have discussed this with my current specialist who has given me some options but they all include increasing medication and I’m reluctant to do this at present because on balance, I feel I that I have the trade off about right for now. I retired last year which helps tremendously because I can grab a couple of hours sleep in the daytime if I want to - and if I can - and I don’t need to drive if I feel ropey.
I did increase my medication quite a lot at one point in order to try and remain in work for longer but ultimately came to the conclusion that I had the balance all wrong. I was effectively existing only to work and even with the increase in medication I was still struggling and constantly worried about being taken down the capability route. The constant stress and worry was doing nothing to help with sleep or health generally and possibly counteracted the impact of the increase in medication - but who knows. I eventually found myself trying to hold down an incredibly stressful and responsible job which involved a lot of driving on 2 hours sleep a night for weeks on end. There were days when I didn’t actually know where I was and I fell asleep in more than one important meeting.
I ultimately applied for ill health retirement and was lucky enough to be awarded it. Not everybody is in a position to be able to retire and for some people, work remains the absolute priority. I still miss work terribly but all things considered, the route that I took was the best trade-off for me.
Managing sleeplessness in Parkinson’s is wrapped up with managing Parkinson’s generally taking into account what is important and what is possible for each of us in terms of lifestyle and priorities. Medication changes possibly could help improve sleeping patterns but if your priority is to manage on the minimum dose of medication then this may not be an option that you would consider. Some people have found sleep apps quite useful and I definitely find breathing exercises and relaxation techniques beneficial, though sometimes I’m just not going to sleep whatever I do .
I really hope you find a way forward with this that works for you. Lack of sleep can have the most awful impact on our ability to function effectively and our emotional and mental health but it’s prevalence and impact seems to be somewhat neglected in terms of treating Parkinson’s; just a personal viewpoint.
i had problems sleeping for years asked doctor for meds but told they didn’t prescribe sleeping pills. i saw another doctor who prescribed mertazapine an anti depressant slept well ever since. I now look forward to going to bed for a good nights sleep
Can i please ask your dosagr
I was put on 30 mg & recently was told a lower dose was better for sleep.
Sorry I don’t remember what dosage my neuro advised as I’ve not started taking it.
Yes it’s correct 15mg mirtazapine is better for sleep; 30mg may keep you awake. Two separate medical people told me that.
I have a tame private GP who gives me a prescription for Zopiclone. Bless him. 3.75gm most nights does the trick.