Extra Sinemet needed?

Hi, I have an appointment with a PD nurse in mid-December, but I’m mulling over whether I should call the doc before then to discuss my medication and wondered if anyone had any similar experiences or general thoughts.

I’m on Rasagiline, 1mg, Sinemet Plus, 25/100mg, 4x per day, currently at 9am, 12.30pm, 4.15pm and 7.45pm and Half Sinemet CR 25/100 at night (I take this at bedtime, which is around 9.30pm-10pm).

The CR was introduced after my last visit to the nurse six months ago as my biggest problem was (and is) insomnia and she thought the CR might help – I don’t seem to have as much difficulty sleeping when there’s Sinemet in my system. This may be because with Sinemet I find it easier to get into a comfortable position for sleep, rather than it actually helping me to sleep if you see what I mean.

To an extent, this has worked as I now rarely have trouble actually getting to sleep. The problem is that I wake up at 3am or even 2am – I’m assuming that’s because the Sinemet has worn off – and I can’t get back off again.

I have found that if I take half of a Sinemet Plus tablet when I wake up at 2-3am, I can usually go back to sleep. Only for an hour or two, but that’s better than nothing. I found that if I then take another half a pill I can get back to sleep again for an hour or two.

Now, I tried the extra half pill trick before my last nurse appointment and I mentioned this to the nurse, expecting to get a telling off. But all she said was that she couldn’t comment as she wasn’t a prescribing nurse, but she did say that she would recommend the CR but she’d have to run it by someone else. Presumably she did as I got the CR prescription, but I never had any comment/warning about the extra half a pill).

I think I may need an increased dosage/frequency with the Sinemet as it does seem to be wearing off between doses. I’ve been aiming for every 3.5hrs, but I think maybe 2.5hrs would be better, although I’d obviously need more pills to make it through the day.

I have to say that, while Sinemet can sometimes be slow to kick in, it usually does so within half an hour, or even 20mins and it works well, in that I have a good range of movement and dexterity, which I lose without it.

Sorry to drone on, so I’ll shut up for now. Any observations much appreciated and thank you very much in advance.

Regards, Roy.

Hi Roy,
Medication can be tricky, as everyone’s needs are different. As sure as you’ll hear from our community soon, we would also remind you that you can reach out to our brilliant helpline team on 0808 800 0303. It’s free and confidential and they are a great place to direct questions about medication and dosage.
Best to you and yours,
Forum Moderator

Hello Roy. Your regime sounds very similar to mine. I take one Rasagiline, 5 Sinemet plus, and a CR half sinemet at night. I go to sleep as soon as my head touches the pillow, but wake after 4-5 hours and find it difficult to get any more sleep. I went to a lecture by Prof Jenner of Kings recently and he asked anyone in the room who had Parkinsons and slept well to raise their hand. Not one did. All you can do is try anything/everything and when you find something that works don’t expect it to last for long.
I have had some fantastic advice, eg:
get a cat or dog, let it sleep on your bed, it will keep you warm(esp. when it pees)
get up as soon as you wake, have a hot drink and a little snack
never snack when you wake because you will wake fancying a little snack
never watch tv or use computer in the night
try that itv relaxing thing
don’t lie there fuming get up and do something interesting
don’t get interested in anything it will keep you awake.
The best advice I have had is find a sense of humour, as twisted and perverse as possible. It works well for the day time as well as the night.
Best of luck.

Thanks Jason, I will certainly give the team a call.

Thanks Mosie - interesting to hear what Prof Jenner said. Sounds like our experiences are similar in that I too can usually get to sleep ok but it’s waking up after about 4 hours and being unable to get back off again. I agree absolutely regarding the sense of humour, but I sometimes find it’s best to rein it in a bit when talking to others about my experiences - people don’t always get it. :smiley:

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