Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Could it really be so simple?

My problems with sleep have been going on for more than two years, but they seemed to get significantly worse at the end of last year (2016), when I stopped taking Ropinirole. I had thought that the lack of Ropinirole might be the cause; my consultant had said that it could cause hyperactivity, which I thought might have been masking the effects of poor sleep, allowing me to run on empty …

But now I have a new theory. A very simple one: I was undermedicated. And I’m amazed that it took me this long to figure it out.

In June, I was bitten by an insect and had an impressive (but not dangerous) allergic reaction to the bite. More seriously, the bite became infected and I ended up in hospital overnight on intraveneous antibiotics. The time in hospital was a pause, a break from normal life: a time to think. I realised that I needed to do something about my sleep. I decided to try over the counter medication (with advice from my GP and pharmacist).  Unfortunately, it didn’t work (I think mainly because my problem was not going to sleep in the first instance, but staying asleep).

I also got in touch with my Parkinson’s nurse specialist and asked for help.  She wanted me to speak to the consultant, but that wasn’t possible at the time (I now have an appointment for September).

It felt like I was unavoidably on my own, at least for the duration of the summer holidays.

After struggling through a nasty cold that was all the nastier (or so I presume) for my poor sleep, it suddenly occurred to me to try adding an extra Sinemet CR tablet into my day.

Sinemet CR is a controlled release form of Sinemet, a widely-prescribed levodopa vehicle that contains 50mg caridopa as well as 200mg levodopa. It is currently my main anti-Parkinson’s drug. I also take 1mg Rasagiline (Azilect) daily for its supposed protective function, and have a supply of Sinemet Plus (half the dose of the CR, but potentially faster acting because it isn’t controlled release) that I use as a sort of boost to the CR.

I was taking four CR daily, starting at 7 am and finishing at 8:30 pm. I would go to bed and wake in the wee small hours, typically between 3 and 4:30 am. If I went to bed late, I would often wake earlier. Going back to sleep was difficult. Often I would start to notice my Parkinson’s symptoms getting more prevalent as I got more and more impatient with being awake; I tried taking Sinemet Plus, and it seemed to help, often giving me another two hours of sleep, about an hour after taking it.  It wasn’t reliable, but it was the only thing that seemed to have any effect at all. This was one of the reasons that I decided to try a new regime.

I am now taking five CR daily, starting at 7am and finishing at 11pm. They are a little closer together.

It has only been a few days – six, to be precise – but the effect was apparent the first night and has remained constant: I sleep longer (I’ve been waking at 6am). I feel better during the day. I have not needed to “boost” myself with Sinemet Plus so much. I am still, I think, recovering (from the cold as well as from prolonged lack of sleep), but things are definitely looking better.

I have also noticed that, when my sleep was interrupted in the early hours, I invaribly woke in the same position that I had gone to sleep in. I don’t know if that is, or was, “normal” for me or not – I had never scrutinised my sleep that closely before. But a couple of times over the last week, I have woken in a different position – both times on my back, instead of on my right hand side. One of those awakenings was in the middle of the night. I woke enough to register it, and to turn onto my side, and then… I went back to sleep.

 

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